tag:blogger.com,1999:blog-51371008491502443002024-03-05T08:15:32.021-05:00Constraint InducedLaurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.comBlogger122125tag:blogger.com,1999:blog-5137100849150244300.post-33432730621013271762013-11-05T20:56:00.001-05:002013-11-05T21:06:47.029-05:00Olivia's Story<i>I know it has been a long time since my last post, and SO much has happened since then. Perhaps I will fill in the blanks later, but in the meantime I had to share a guest post from Olivia. She was asked to write a memoir for school about a transformative moment, and she chose to write about Simon's first seizure. I think it is an amazing testament to sibling love and to her incredible spirit. </i><br />
<br />
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<span style="line-height: 115%;"><b>The Long
Journey Through Epilepsy<o:p></o:p></b></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">How could I know
what would happen that night? How could I guess that it would be the scariest
night of my life; a night that would change me forever, but change my brother
even more?<o:p></o:p></span></div>
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<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">When we went
to bed that night everything seemed perfectly normal. My mom and dad, my brother
Simon and I, were all fast asleep in our own rooms. We were unaware that we
would be woken up at 11:00 PM to find my brother making strange noises, unable
to respond to us, and shaking uncontrollably.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">I was
suddenly woken from my dreams by the bright yellow light shining from my
brother’s room across the hallway. The light seemed odd to me, because I knew
that Simon loved to sleep so much that he sometimes went to bed on his own (which
was odd for someone his age). I definitely didn’t think he would wake up late
at night and turn his light on. But, tired as I was, I was also full of
curiosity about what might be going on. Maybe he wanted to play with some toys,
or go downstairs to watch TV? When I opened my eyes, I saw something I did not
understand. My brother was lying flat on the floor and my parents were with
him.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">I heard my
brother making a strange noise; it sounded almost like continuous hiccupping.
I’d never heard a human being make a sound like that before, and I also saw
that he was shaking violently--as if the floor underneath him were vibrating. I
heard my dad calling Simon’s name urgently, but he didn’t answer. Then I heard my
mom’s voice talking to a 911 operator even more urgently.<span style="mso-spacerun: yes;"> </span>Though it was difficult to clearly see everything
happening through the opening in my bedroom door, there was no hiding the fear
in my parents’ voices.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">I immediately
wanted to help my parents, I wanted to run right into my brother’s room to find
out what was happening and ask if Simon would be okay. I was filled to the brim
with questions, and what I wanted most was to help my brother.<span style="mso-spacerun: yes;"> </span>But I found that when I tried to get up I was
frozen. It was as if I were glued to my bed, and the harder I tried to get up
the more I felt myself being pushed down by my own fear. Instead of helping my
brother, my questions overwhelmed me and I cried silently in my bed.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">It was only a
few moments later that I heard a siren. I was relieved that finally help had
come. Still crying, I peeked from underneath my covers and saw glimpses of paramedics
dashing into the scene. Just as quickly they left -- taking my brother and my
mother with them.<span style="mso-spacerun: yes;"> </span>As Simon was rushed
out of the house on the gurney, my dad came into my room and told me to get up
quickly and get ready to go. Finally unfrozen by my dad’s directions, I did as
he asked and left with him. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">Outside of
our house was a fire engine (which seemed a little weird to me because from
what I could tell, our house was definitely not on fire), and an ambulance getting
ready to go. Dad quickly took me across the street to my friend’s, house. As he knocked loudly on the door, I asked him what I
desperately wanted to know.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">“Dad, what’s
going on?” I asked, “What will happen to Simon? Where is he going and how long
will you be gone?”</span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">When Dad
turned to me, I noticed that his face was stained with tears the way that paint
stains a white T- shirt. I could see the fear in his face, and I had a feeling
that if I were to take out a mirror I would see the very same expression on my
own face. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">“Simon is having
a seizure,” said Dad. “We have to take him to the hospital, so that they can
make it stop. The doctors will know what to do.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">As he said
this, one of the neighbors answered the door. As soon as they saw our faces and
the lights from the ambulance, they told me to come in and told Dad to go. As
he ran back across the street, Dad shouted that he would call as soon as he
could. My neighbor pulled me into a hug and I tried to explain what had
happened, but all I could do was cry. I cried harder and harder as I realized
that I didn’t fully understand what was going on, and I didn’t know what was
going to happen to Simon, or to my family.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">Not long
after I had settled down, there was a knock at the door. My grand mom had come
to get me and take me back to my house. Once we got back I refused to return to
bed knowing that Simon was in danger. So grand mom and I just sat at the dining
room table and I tried to talk about what had happened. She tried her best to
comfort me, but it didn’t help. All I wanted was to know if Simon was okay. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">At some
point I must have fallen asleep, I really don’t remember. What happened next is
a blur. I spent many days with my grand mom and papa while Simon was in the
hospital with my parents. They called to check on me, and at first they just
said that Simon’s seizure had stopped, but they couldn’t tell if he was okay or
not because he was in a type of sleep called a coma. Finally, a few days later,
they called with the best news I felt I had ever heard. Simon had finally woken
up, they thought he would be okay, and they would all come home soon. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">When my
parents finally came home with Simon he seemed tired, but like himself. While
he was resting they sat down with me to try to explain what had happened. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">“Olivia,”
said mom, “what Simon had last Thursday is something called a seizure.” Then my
mom handed me a small, thin book. The book was printed in black and white and it
looked like it had been put together by a broken stapler. Though I knew that I
shouldn’t judge a book by its cover, I couldn’t help thinking that this book did
not look good. On the cover there was a drawing of a man that looked like a
slightly upgraded stick figure. He had his hands on his hips, and above his
head was a thought bubble with a question mark in it. It looked like he was
confused about the exactly what book he was on. The title of the book was, “<i style="mso-bidi-font-style: normal;">What Is a Seizure?”</i> <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">I put the
book down and looked back up at my parents. I had too many questions to just
settle for a book. I needed answers now.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">“Why did
Simon have a seizure?” I asked. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">“We don’t
know yet.” Said mom. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">“Will I have
seizures, too?” <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">“No,” said
mom, “seizures aren’t contagious.” <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">“Will Simon have
more seizures?” I asked.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">“Maybe,”
said mom, “but Simon is on a medicine now to help prevent them. We hope that he
won’t have any more. But he might. And most of the time seizures aren’t as bad
as the one Simon just had. Most of the time they are fast and he won’t need to
go to the hospital.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">Then my
parents went on about how seizures are hard to understand, and that the book would
help explain it for me, and so on. I could tell they were tired. Finally, I
nodded and went upstairs with the book in my hand. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">I didn’t
read the book at first, instead I just shoved it in with another pile of papers
and books so that it could have some company. <span style="mso-spacerun: yes;"> </span>I sat on my bed trying to take in the short
conversation that I had with my parents. I was still dying to know more… <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">The clutter in
my bedroom made me feel uncomfortable and the light inside my room made me
squint. I wanted to go downstairs and listen to the conversation that my
parents were having with grand mom and papa. I was still worried out of my
mind. It felt as if the seizure happened just a few minutes ago, and I still
felt unsure about whether my brother was okay or not. I finally picked up the
book.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">“What <i style="mso-bidi-font-style: normal;">is</i> a seizure?” I asked the little man on
the cover. He didn’t answer me, but I stared at him for a long moment before I finally
turned the page.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">It has been
few years since I first read that book, and since my brother had his first
seizure. Since then, Simon has had many more seizures, and I have learned all
about what seizures are. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">Seizures are
caused when the electricity in your brain sort of goes wild. There are many
different kinds of seizures, and my brother has a variety. The worst is when he
has nocturnal seizures (seizures that occur in the middle of the night),
because they can be dangerous. My parents have an alarm attached to Simon’s toe
that goes off if his breathing stops or his heart goes too fast.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">I learned
that my brother had his seizure because he has epilepsy. Simon has epilepsy
because he had a stroke before he was born and had brain damage. He has
hydrocephalus, cerebral palsy, and epilepsy. There is no cure for his
disabilities, but he takes medicine every morning and night to try to prevent
more seizures. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">Though I
still get a little scared when he has a seizure, I don’t get frozen any more. I
have learned ways to help Simon and my parents in an emergency. Sometimes I get
the phone. Sometimes I hold the door open and wait for the ambulance. Sometimes
I even hold Simon while my parents get his medicine. I’m even learning how to
help train his service dog, Tigger.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;">I also
learned that if Simon was going to have a happy life, then I would need to be
the very best big sister that I could be. I knew I had to set an example for
other people about how not to be afraid when someone has a disability. I am
proud of Simon and am always glad to help him whenever he needs it (even if he
is a crazy monkey sometimes). Disabilities could never make me love my brother
any less. He is the very best brother around. I am blessed to be his sister,
and I know as much as I love him, he loves me.<span class="Apple-style-span" style="font-size: medium;"><o:p></o:p></span></span></div>
<!--EndFragment-->Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com0tag:blogger.com,1999:blog-5137100849150244300.post-30829273578341639512013-07-24T05:54:00.000-04:002013-07-24T07:58:39.968-04:00A Shift in the ConversationToday is going to be a 2 pot of coffee kind of day. I've been up since 4 am when Simon's pulse oximeter alarm went off, not because of a seizure (thank goodness), but because of a momentary drop in heart rate which has been happening from time to time while he has been on the high-dose valium.<br />
<br />
So, he's okay, but I am not, and I can't get back to sleep.<br />
<br />
It has been a rough week here and the compiled stresses have been ebbing away at my ability to stay positive, present, grateful. I think, perhaps, I just need to acknowledge it. Then, maybe, I can get back to being positive, present, grateful (not to mention functional).<br />
<br />
So, let's acknowledge it. Recently, there has been a change in the conversations I am having about Simon, with his teachers and doctors and therapists. No longer are "the professionals" saying things like "Lots of kids go though [insert challenge] and get better, they just need a little extra time and extra help."<br />
<br />
No... I haven't heard that in a while, and I did so cling to it.<br />
<br />
Instead, they are suggesting more interventions. Everything from more/different medicines, to more therapy programs and clinical evaluations, to more specialized (private placement) schooling options. Yikes.<br />
<br />
In addition, yesterday when I picked the kids up at school, I had to have my first conversation with a teacher about Simon being treated unkindly by other kids on the school bus. Something I only knew about because his sister was with him (and defended him) and let me know about it. But, the fact that this has started (every special parent's fear), and that Olivia isn't often going to be there to defend him in the future, and that I may never even know about such things happening because Simon still can't tell me, is a difficult thing to come to terms with.<br />
<br />
We are stepping into new territory, turf I never wanted to be on, and I am overwhelmed and sad and this Pollyanna is just plain pissed off.<br />
<br />
On top of all that, because I am a working mum, things have been even more complicated. Crazy shifting schedules choc full of appointments are making planning and getting things done tough (and honestly I know things won't get well sorted until maybe October.. I hope...). And, I have been feeling both a desire and a pressure to pursue some continuing education (darn technology keeps changing.. one has to keep up!), but I don't feel that I can act on it right now.<br />
<br />
My breaking point came yesterday afternoon when Brian came home telling me about an awesome workshop he went to (we are both in the same field). I had hoped go to this same workshop, but it conflicted with an important therapy appointment for Simon, so I could not attend. Hearing about it, and about all the other folks I knew who where there, and then having Brian (innocently) tell me that "I really need to teach myself this stuff," made me even more disappointed I'd missed the workshop... then worried... then pissed off. <br />
<br />
$#%*&!!<br />
<br />
So, I went to Target. I bought some new bins for the closet (because when the going gets tough, cleaning out cupboards is a great way to assert one's control over the universe) and a lipstick (because I like lipstick), and I just wandered around for a bit trying to refocus my perspective. Trying to remember positive, present, grateful. Trying to just be okay.<br />
<br />
And, I know I will be. I know I will continue to do everything and anything to give Simon the best chance at as much health and independence and happiness as he can possibly have. I know I will find ways to continue to make the work-life "balance" (HA!) work out. I know I will get back up on my feet, stay on the path of positive, present and grateful, and cope with all that may be coming one step at a time.<br />
<br />
I know it, because I know it is what has to happen. And I know I am tough, smart, resilient, and determined enough to make it happen. And... well, look at that. There is a positive thing I have learned and am grateful for.<br />
<br />
I'm finally learning to have some faith in me.<br />
<br />
<br />
<br />Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com0tag:blogger.com,1999:blog-5137100849150244300.post-28536716185238290152013-06-26T20:45:00.001-04:002013-06-26T21:18:30.401-04:00Be Our GuestYears ago, I did not see the point of a vacation in a place like Disney. It seemed somehow artificial and I was looking for "authentic" experiences when I traveled. But, when my daughter turned five and was enamored of all things magical and sparkly, I knew the trip would make her happy and I was right. Watching her joy was authentic enough to make me resolve to go back again when her brother turned five a few years later.<br />
<div>
<br /></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg78p1xWpUjYU9aR3-kT2YMF62o7o84Z4yGh2a6Vir8BHakenjEDgVZrdMUI5AYl4W4T4ta6ele4Vm9r7MhaxNz4EbdQnaj8oyQRk6YKEZ3FYxrJzX26DfLi4WYvr63Hjbg2q2CkB-bcTep/s640/blogger-image--235840669.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg78p1xWpUjYU9aR3-kT2YMF62o7o84Z4yGh2a6Vir8BHakenjEDgVZrdMUI5AYl4W4T4ta6ele4Vm9r7MhaxNz4EbdQnaj8oyQRk6YKEZ3FYxrJzX26DfLi4WYvr63Hjbg2q2CkB-bcTep/s320/blogger-image--235840669.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Olivia on her 5th birthday. Sniff.</td></tr>
</tbody></table>
Well, life happened and things with Simon got... complicated. Our Disney plans were blown off course partially because I was too afraid to travel so far with a child that had special needs, sometimes even requiring sudden unplanned hospital stays. I also worried that with his sensory issues and cognitive delays he would be unable to participate, much less have fun. I was even worried about how we would get around the expansive park system.<br />
<div>
<br /></div>
<div>
'Cause I'll let you in on a little secret -- I know I make it look good, but this stuff ain't easy. Taking this show on the road can be a daunting proposition even on my best days. Some days it is a miracle if I just get everyone out the door on time, much less on a plane and into a tourist mecca.</div>
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKMU3ZUha80cyd3d4m4BsSvLQ922ngclhNp3B1J6lJvQxMEg7wJYmr8BsJ_FGB3TKmffz61Fcuf9DP4wJPlswhOihCX54Uz9fhsuZajL6_6iHtj-2fOe04coZyLO-U5fl3iHJUD0swbgPp/s1600/blogger-image--1420666134.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKMU3ZUha80cyd3d4m4BsSvLQ922ngclhNp3B1J6lJvQxMEg7wJYmr8BsJ_FGB3TKmffz61Fcuf9DP4wJPlswhOihCX54Uz9fhsuZajL6_6iHtj-2fOe04coZyLO-U5fl3iHJUD0swbgPp/s320/blogger-image--1420666134.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It takes a lot more than lipstick to make this look good.</td></tr>
</tbody></table>
<div>
<br /></div>
<div>
<br /></div>
<div>
But, I never forgot the look of joy on Olivia's face and I wanted to see it again. I wanted to see it on Simon's face too. He deserves that, and so do I. </div>
<div>
<br /></div>
<div>
So we decided to make it happen. And, through a little research we learned that Disney is actually very accustomed to families needing extra help. With a bit more planning and preparation, some well placed phone calls and (even more) paperwork, we were able to do Disney again in a way that we thought might actually work. </div>
<div>
<br /></div>
<div>
And it did.</div>
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFV1j4NSuKweDDAsKlyR4T0N3B60f6UB2VZxkvB9NO9fRXOlA-1VKDDxinNsDx4cJ3bmTdknIFUholwLnzXnKLyCuHoqFPno56wVfy5GFKRMTqrjsOuyYAoyB1mNcjTaES8nWoYDwH6FI8/s1600/blogger-image-107428457.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="287" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFV1j4NSuKweDDAsKlyR4T0N3B60f6UB2VZxkvB9NO9fRXOlA-1VKDDxinNsDx4cJ3bmTdknIFUholwLnzXnKLyCuHoqFPno56wVfy5GFKRMTqrjsOuyYAoyB1mNcjTaES8nWoYDwH6FI8/s320/blogger-image-107428457.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Doctor's note demonstrating medical need in hand, we visited guest services who cheerfully hooked us up with a "stroller as wheelchair" band and a disability pass. We were able to use Simon's swanky new special needs stroller everywhere, even on the trams.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLVpclzikou5nN0La3Pp_S1BJSj6w88Bwvkulu5Xo89fxdsTPgPuig7yGqvcWp-H3fa_FMgPhJvD-W3Urty1XVGmUTlFbTmjgzXjj3RaTnCA6AgZyCBVbYt91FGPX4530ChaAqH6XmHRqN/s1600/blogger-image-1933970627.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLVpclzikou5nN0La3Pp_S1BJSj6w88Bwvkulu5Xo89fxdsTPgPuig7yGqvcWp-H3fa_FMgPhJvD-W3Urty1XVGmUTlFbTmjgzXjj3RaTnCA6AgZyCBVbYt91FGPX4530ChaAqH6XmHRqN/s320/blogger-image-1933970627.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thanks to the disability pass, we had reduced wait times, which made it possible for Simon to enjoy the rides (and boy did he enjoy them!). </td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPb-Im_dgZxapOiFogaIybJU9ihK4YyrpaG1vW71UImoVjEgkJVHDiMPZULPwpWTNGRS62qkN67E4UF2knKEHP92_CxZOAh544uA6YDAWLKPqNqWhzAipxRU1RU99knPtz3uOf8ok89S0z/s1600/blogger-image--822663784.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="268" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPb-Im_dgZxapOiFogaIybJU9ihK4YyrpaG1vW71UImoVjEgkJVHDiMPZULPwpWTNGRS62qkN67E4UF2knKEHP92_CxZOAh544uA6YDAWLKPqNqWhzAipxRU1RU99knPtz3uOf8ok89S0z/s320/blogger-image--822663784.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tigger was treated like a rock star through our entire visit (really, we were being stopped for photos and people recognized us everywhere we went). The parks have designated green spaces designed for the comfort of service dogs. He even got on some of the rides! </td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNCgClACZwoCXLl23to7J1eAlAt9JNoYzXcjHFzRR92tNrolj86UBvdlHpxIRDtWatRmdmi-CwNfgNTazG7CuyrpuC0cE5hpi6FzkXFJ7s_B7A76iGIPF9SxJi9dnEmSSo7Q9JnKY7lCrp/s1600/blogger-image-2092690613.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNCgClACZwoCXLl23to7J1eAlAt9JNoYzXcjHFzRR92tNrolj86UBvdlHpxIRDtWatRmdmi-CwNfgNTazG7CuyrpuC0cE5hpi6FzkXFJ7s_B7A76iGIPF9SxJi9dnEmSSo7Q9JnKY7lCrp/s320/blogger-image-2092690613.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I didn't even have to worry about food allergies (Simon and I both have them). The chefs came to our table and told us how Disney has taken common allergens out of food wherever possible and alerted us to any potential risk of cross contamination. In many restaurants they even offered to make us a special meal if we wanted something otherwise unavailable.</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6scqaV70NYjQafvaUf7D2BEBNM4B9zA0p1MbSm30ODw6sNksUHFuI-A1gD4fEtFirySyJG08vn1_cwHsRTM8YC_297cv5gzF69Sn0u1RpMk98Z2H6XXvpJmHARFpZziqq9U1gjoUR9HsC/s1600/blogger-image--1672827346.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6scqaV70NYjQafvaUf7D2BEBNM4B9zA0p1MbSm30ODw6sNksUHFuI-A1gD4fEtFirySyJG08vn1_cwHsRTM8YC_297cv5gzF69Sn0u1RpMk98Z2H6XXvpJmHARFpZziqq9U1gjoUR9HsC/s320/blogger-image--1672827346.jpg" width="228" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The characters took extra time with Simon. They saw that he needed it, and they got down on his level, listened to him carefully, and truly made him feel that he was really meeting the characters he knows and loves through shows and stories. When he asked Cinderella to the ball, she literally didn't skip a beat. When he told Tigger to bounce, he did!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyH1190unBMKBYKEVdYHp_kkVsyLKwD0CaXa41F5C6H70z6_BHb13yXKOrmY0_0vlVuDgWPW5LXGsLD9VoRlp6PrkgE1AJKkiPNBqSS5G5Cse6IJ8-KohpDwIeWb6Jz3HAfGdDVO4sCrW9/s1600/blogger-image-434946395.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyH1190unBMKBYKEVdYHp_kkVsyLKwD0CaXa41F5C6H70z6_BHb13yXKOrmY0_0vlVuDgWPW5LXGsLD9VoRlp6PrkgE1AJKkiPNBqSS5G5Cse6IJ8-KohpDwIeWb6Jz3HAfGdDVO4sCrW9/s320/blogger-image-434946395.jpg" width="236" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our big girl got some extra love as well. They knew she was clearly an awesome big sis -- she always let Simon go first and take as much time as he needed with all of the attractions. One of the best parts of the trip was seeing that she still lights up when Mickey's in the room. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-A03qb32ctYFSdSuHR2tbzSqZ-7x3R5lH3KFNv0tLOG5sH_vWXNKBI4XtzV4gFPZnlPFsSKv3R2fQ1Fjm9MqqVRr7WUvwdiF0sgFKLWVZO5hwfz_aG8Tnz6684FIrmWF2TBXIwYyWFOyh/s1600/blogger-image-711314589.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-A03qb32ctYFSdSuHR2tbzSqZ-7x3R5lH3KFNv0tLOG5sH_vWXNKBI4XtzV4gFPZnlPFsSKv3R2fQ1Fjm9MqqVRr7WUvwdiF0sgFKLWVZO5hwfz_aG8Tnz6684FIrmWF2TBXIwYyWFOyh/s320/blogger-image-711314589.jpg" width="248" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So, thank you, Disney. For the first time in a very long time I didn't feel like we were a <i>special needs</i> family -- we were just a <i>special</i> family. And because of that, I know we will be back again soon.</td></tr>
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Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com6tag:blogger.com,1999:blog-5137100849150244300.post-70543705309357275332013-06-06T19:07:00.001-04:002013-06-06T19:07:23.975-04:00How to Advocate like a Rock StarWhen we exited the special education classroom the county intended to place Simon in, the representative accompanying us turned to Brian and I (who I think must have looked rather shocked) and said; "I am so sorry. I am so sorry it has to be like this. But you will have to fight. It is always going to be a fight. I hope things will get better."<div>
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Indeed, we were upset by what we saw. I won't go into the gory details, but the environment that we were sent to review was not anything like what I know Simon needs (and much less than what I want for him!). Unfortunately, we weren't being given a choice. As a kid that needs special education Simon's options are very limited. You either take what the county provides, or you hire a lawyer to fight for private placement in a school that deals exclusively with special needs (and will only accept you with county referral and therefore county dollars to follow). That option is one we are likely to explore eventually, but for now we want Simon to be with "typical" peers as much as possible, and that means public placement. </div>
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Fighting for your child's right to be included, to have adequate access to necessary programs and tools to give them the greatest chance at success, or to simply be treated with the dignity and respect that every person deserves, is a fight that I am pretty certain all special needs parents will encounter at least once if not multiple times. You fight for it in small day-to-day skirmishes -- like reminding well-meaning people <a href="http://constraintinduced.blogspot.com/2011/03/dymo-culture.html" target="_blank">not to use the "R-word,"</a> or teaching other kids (and parents) how to interact with your child (you know, like he's a kid). Sometimes you fight for it in carefully chosen battles -- like taking on <a href="http://constraintinduced.blogspot.com/2012/11/speak-easy.html" target="_blank">large organizations that need a wake-up call when it comes to their accessibility</a>. And unfortunately, sometimes you realize you've just set foot in a war-torn nation where you're going to have to find a way to make a habitable environment happen -- <a href="http://constraintinduced.blogspot.com/2012/08/a-tale-of-two-doctors.html" target="_blank">like the healthcare system</a>, or the realm of public education. </div>
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We've been lucky up until now when it came to school for Simon. I just didn't realize HOW lucky we were until we saw how bad other places could be. The past several weeks have been a very distressing wake-up call on the state of special education. Fortunately, however, I'm (a pain in the ass) <i>persistent</i> and I kept asking to look at other programs -- even though the one we were told we had to go to wasn't right. And fortunately, I was allowed to look. Even better, I found out that though there are a lot of bad programs - there ARE other good programs, albeit fewer and further between. Once I knew this, I knew I had to fight for alternate placement for Simon. Today, I'm so happy to be able to report that we are able to make that happen.</div>
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I won't pretend to know all there is to know about advocacy, or about special education. It is a big, complicated, litigious thing and I have just scratched the surface. But, I have learned a few things and I want to share them here just in case -- like me -- you are at the scary start and not sure what to do or where to look for help.</div>
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So, here goes:</div>
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1. I've said this before, but it is worth saying again -- YOU ARE THE BEST AND ONLY EXPERT ON YOUR CHILD. You know what your child needs. You know what works and what doesn't. And, you have to admit it, at this point you have a pretty well developed "gut" sense about things (total super mom skill!). If what you are being offered <i>seems</i> wrong, trust that feeling. If it seems right, trust that, too.</div>
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2. Do your research. NO ONE else can do this for you. If you aren't sure about something or somewhere, insist on seeing alternate options. You can't know what you are looking at if you can't compare "apples to apples." ASK other teachers, administrators, therapists, doctors, and parents. Join all the social media groups for special needs parents in your area, attend the parties and playdates -- build your network (it is vital!) and then keep your ear to the ground so that you can find out the "scoop" on programs, teachers, administrators, etc. You can't use hearsay as a reason not to go with a program, but you can use it to let you know whether or not your gut was correct, and then you can dig deeper into the issues you are concerned about in a more informed way. </div>
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3. Know the rules. Like I said, this is a litigious process. Ask about the rules of engagement, attend workshops, call advocacy services (there are even many free options available through therapy centers), to make sure you know what you can and can't expect. You have to be reasonable in your expectations (and yes, expecting that your child is safe, respected, and given access to adequate resources ARE reasonable accommodations to request) in order to have a chance at success. Make sure that your reasons and needs are expressed in a way that reflects exactly what you have documented (through school reports and other assessments) as what your child needs. Write it out. Provide documentation. Keep a paper trail -- no matter how many miles long that trail is.</div>
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4. Get help. Enlist the help and support of all the people that you know care about your child and want what is best for him. We were very lucky to have Simon's current school administration behind us -- their support was invaluable and I will thank them every single day. Even still, I called an advocate for expert advice, consulted with the experts at Simon's other care centers and found out exactly who to talk to "on the inside" about my concerns. </div>
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5. Don't give up. Being persistent (as well as reasonable and polite) is key. Like I tell my students -- the only people that are guaranteed not to succeed are the ones that stop trying. That "trying" may not look exactly the way that you hoped (maybe you didn't get all -- or much, or any -- of what you wanted) but don't stop trying to make it work, talking to people, getting help, advocating for your kid and showing everyone how it SHOULD be done. All throughout this process, whenever the going got tough, people reminded me that the only way things will ever get better for <i>all</i> of our children is if those of us that can continue to stand up for them, as much as we can, whenever we can. Truthfully, "fighting the good fight" is hard -- it is time consuming, expensive, emotionally draining, and even disheartening at times -- but it is some of the most important work we can do as parents (and maybe as people). </div>
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And what could possibly be more worthwhile?</div>
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Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com17tag:blogger.com,1999:blog-5137100849150244300.post-34697936230841865762013-05-20T13:47:00.002-04:002013-05-20T13:52:50.027-04:00Toughing it outThe past few months here have been pretty challenging. In fact, at times, life has seemed just plain overwhelming. Work-wise I taught 3 courses this semester (ack!) as well as maintained a full studio practice (and I even wrote an article for a real media outlet!). Brian completed the final and most difficult semester of his MBA program while continuing to work full-time. We tried to jointly manage the caring-for-a-family- full-time gig; and it feels like we have spent days upon days in doctor's and therapist's appointments, evaluations, school meetings and site visits, we've even consulted with a special needs advocate for the first time to try to help us with some challenges we're facing in finding the right educational placement for Simon next year (he needs to switch schools because his current school does not have a special education program past kindergarten. I'll have a full break-down over that one later...)<br />
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The kids have had a lot on their plates as well -- Olivia had her first science fair project, wrangled with fractions in GT math, and had more essays and tests and projects than she has ever had before. Simon has had his seventh birthday (omg!), 2 EEGs, countless appointments, and an unfortunate increase in seizures leading to lots of med changes (and some super heavy duty side effects -- weight loss, weight gain, hair loss, emotional instability, overwhelming tiredness and lethargy... you name it....) due to an overall worsening of his underlying epilepsy. After being away for six months, Tigger has even had some challenges adjusting to learning to work in our home with Simon in new and different ways.<br />
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Suffice it it say that by the time we made it to this weekend, we were feeling pretty done. Strung out. Overcooked. Stick a fork in it. Burnt toast.<br />
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And then this stuff happened...<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC3YNaqhXsE5uiE9c9ChnAA00E3fYoywj4jeY8ztC2lYzWHsrjt-D90rfdVhxUuCPbMNTL9dfjr_2zM5JAFVWeTYx4FiOd9r2XsAdykSdsEN7PZBnBhE1jlKnCAiozSDGls2ji1VGWbZ47/s1600/blogger-image--1882427690.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="175" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC3YNaqhXsE5uiE9c9ChnAA00E3fYoywj4jeY8ztC2lYzWHsrjt-D90rfdVhxUuCPbMNTL9dfjr_2zM5JAFVWeTYx4FiOd9r2XsAdykSdsEN7PZBnBhE1jlKnCAiozSDGls2ji1VGWbZ47/s320/blogger-image--1882427690.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My students rocked their final presentations and reminded me why I love being in the classroom with them.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDON53flRO5f6-D3Uo6zpXGVAVdiFB0vQtgdPZhnB_cm6CrerWhSfdj5riApJ96dgOy7YcTe7UWSn5OhdO_lKwfu2ccg7shoapvFnVP0FJ2ZHXqBTe9MpXY8ynM0XV9-lQJUbXy7wQDoFr/s1600/blogger-image-1599867066.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDON53flRO5f6-D3Uo6zpXGVAVdiFB0vQtgdPZhnB_cm6CrerWhSfdj5riApJ96dgOy7YcTe7UWSn5OhdO_lKwfu2ccg7shoapvFnVP0FJ2ZHXqBTe9MpXY8ynM0XV9-lQJUbXy7wQDoFr/s320/blogger-image-1599867066.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brian graduated with honors (and style!) and we were doubly blessed to celebrate his amazing accomplishment with many of the friends and family that have supported us along the way,</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiklpJM9evtU1z-WU4t4TTNrjdOOsma1lawhA7HTVt3Z1EaYSyNYwcXSVHDZtbjAeEP32u4HxXim0-y73ubCO3Ayi4TR6iUcpvWUuUHJ4U4Yv8dI0fIoIquFOXuS0HaZNBIWu8GAUN0ZnDy/s1600/blogger-image--1132986399.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiklpJM9evtU1z-WU4t4TTNrjdOOsma1lawhA7HTVt3Z1EaYSyNYwcXSVHDZtbjAeEP32u4HxXim0-y73ubCO3Ayi4TR6iUcpvWUuUHJ4U4Yv8dI0fIoIquFOXuS0HaZNBIWu8GAUN0ZnDy/s320/blogger-image--1132986399.jpg" width="243" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Olivia's hard work has been hugely paying off this year -- she won the T-shirt design contest for her school's fundraising walk (see awesome design above!), she won third place in the science fair, she won honorable mention in the Memorial Day "My American Hero" essay contest (by writing about a service dog trainer!) AND she found another four leaf clover (her 3rd this spring) just yesterday. She says she thinks her clovers mean that something amazing is going to happen to her -- I think it already has!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif-by7BklEMPoxMxiWMKePl7R6h5tdZ8AL09AK6G3UpJWkDn75ZruNK-NMJ1QmnQy6Opxc0fi0uPQuN_jr1ltjFOZBW1Gl-4tBe99OZoBz4Bv_WNln3ktCBY3vFVs-wLldmz09WWOXIhyphenhyphenh/s1600/blogger-image--722217875.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif-by7BklEMPoxMxiWMKePl7R6h5tdZ8AL09AK6G3UpJWkDn75ZruNK-NMJ1QmnQy6Opxc0fi0uPQuN_jr1ltjFOZBW1Gl-4tBe99OZoBz4Bv_WNln3ktCBY3vFVs-wLldmz09WWOXIhyphenhyphenh/s320/blogger-image--722217875.jpg" width="244" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And Simon keeps showing us all what real strength is. Despite being on a ton of meds (including high dose valium), being hemiplegic, AND enduring near-constant seizures, he couldn't wait to get on the track and run with the kids for Olivia's school's fundraiser yesterday. Laughing and smiling and leading Tigger with him the entire time.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin_2t5w-bbq_u1gCl6Ua1qjcu-gbsKXLuT-zS7EE4Ot2dkjiy3hnEA8-AElIJUod3qq4yfo9LMTaShuQjSzdaIW3tzkGuhyphenhyphenqNI9PFMrLVXE-MLtfmBP_7RMkDoqov_1WlU92Be6BPG2Bhx/s1600/blogger-image-1597091622.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin_2t5w-bbq_u1gCl6Ua1qjcu-gbsKXLuT-zS7EE4Ot2dkjiy3hnEA8-AElIJUod3qq4yfo9LMTaShuQjSzdaIW3tzkGuhyphenhyphenqNI9PFMrLVXE-MLtfmBP_7RMkDoqov_1WlU92Be6BPG2Bhx/s320/blogger-image-1597091622.jpg" width="226" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And finally, this happened -- Simon got too tired to run, and so his sister pushed him. For 10 joyful, laughing, FASTER! FASTER! laps around the track with her friends. </td></tr>
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And so today it occurs to me -- things get tough, and they might even get tougher. That's how life rolls sometimes. But, we rolled with it, and not only have we "toughed it out," we conquered it. Working, studying, teaching, learning, advocating, walking, running, and finally pushing on through to the finish line, because that is how we roll.<br />
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<br />Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com5tag:blogger.com,1999:blog-5137100849150244300.post-70909536358285368982013-05-07T11:12:00.001-04:002013-05-07T11:12:03.217-04:00A Mother's Day Guest PostLeading up to Mother's Day a good friend and great writer Rita Buettner, asked me to write a guest post for her Catholic Review blog. If you'd like to read it, you can find it here:<br />
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<a href="http://catholicreview.org/blogs/open-window/2013/05/07/guest-post-10-things-a-special-needs-mom-learned-the-hard-way" target="_blank">10 Things a Special Needs Mom Learned (the hard way)</a><br />
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I'd love your feedback! Happy Mother's Day to all the fantastic moms, especially mine. :-)<br />
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<br />Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com0tag:blogger.com,1999:blog-5137100849150244300.post-1105920020317723572013-03-25T17:27:00.000-04:002013-03-25T20:56:38.868-04:00Spring SurpriseI was a little crabby when I woke up this morning. Overnight, we'd gotten several inches of snow that I was unprepared for. The schools were closed, but my work was not (I do live in my office) and I was worried about juggling the kids and the clients for the day. Plus, I had a big meeting scheduled for the afternoon that I had spent most of Sunday preparing for... only to find it was canceled (and I wasted a weekend day!). Grrrrr...<br />
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So, when our neighbors invited us to go sledding with them I almost turned them down. I was afraid I was going to miss an important call. I didn't want to not be there for a client on a Monday morning, it just seemed like bad business. I mulled it over as I sipped my (strong) coffee.<br />
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Maybe the caffeine cleared my head, because it didn't take long for me to remember what my daily intention is -- to be present. It is something I have to remind myself of constantly, because with each surge of progress we see I fear losing Simon, or losing this miraculous progress, more and more. It isn't an irrational fear, but something we have been warned of since surgery was ruled out. Fortunately, for now, the medicines are working and we have not yet exhausted our options, but (me being me) I think ahead. And I worry. And I make myself nuts and I miss out on the gift that is now, the miracle that I have been given. I don't know what the future will bring (no one does); but I <i>do</i> know how many parents of children with cognitive disabilities are praying for a miracle just like the one we've been given. The miracle of getting to know your child better. Even if it doesn't last forever, even if it only lasts for a moment.<br />
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Today, I had a moment. I could choose to be present for my kids on an unexpected snowy Monday morning. It was a gift, and I knew I should take it.<br />
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I'm so glad that I did.<br />
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When we got to the sledding hill it was covered with kids. They were sledding, building forts, and having snowball fights all over the place. Olivia immediately ran off with friends to sled and do belly flops. Simon and I went up and down the hills several times in his little purple sled. Once the novelty of sledding wore off, Simon turned his attention to the kids playing in the snow. In another amazing surge of progress (if that is even the right thing to call these miracles), he was super interested in the other children. He went over and introduced himself to everyone he could find. He gave out loads of high-fives, and participated in multiple snowball fights.<br />
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Here was Simon being "present." With us there in that moment. Something I have prayed for without ever really believing it would happen. Today, I was able to just be with him. As I stood back and watched him go, just being a kid, gratitude swelled in my chest. Happy tears and snowflakes stuck to my lashes.<br />
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I was present. I was there for that moment, which really is the greatest gift of all.<br />
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Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com0tag:blogger.com,1999:blog-5137100849150244300.post-30034749936797186552013-03-21T19:48:00.001-04:002013-03-21T19:49:37.757-04:00A picture worth a thousand words"Mommy, take a picture of me!" <br />
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Big smile, looking right at the camera, using appropriate pronouns, self aware.<br />
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There aren't words to cover all the amazing changes we have seen in Simon. The meds appear to be working (we have another EEG soon to check progress), and there are momentous tiny miracles every day. <br />
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I know I haven't blogged in a while, but big things are on the horizon and I want to share. Tigger is coming home, more medical tests and med changes, more educational plans to create. <br />
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This photo, this moment, seems like a good place to pause and then begin anew. <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnDe3ZA-wzcTbgYLkJBDTTM0Y1t7FUoN-jcwxOEfVqPIdEA0_-S__RrC9ngNYuzw6c43r4Isrm2QRhlB1fR5T5_ATd_i1PbnRryChox8GczAv98HQ9y-fGwCx8gFS1si-BvEy0WGg6ft4t/s640/blogger-image--128813953.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnDe3ZA-wzcTbgYLkJBDTTM0Y1t7FUoN-jcwxOEfVqPIdEA0_-S__RrC9ngNYuzw6c43r4Isrm2QRhlB1fR5T5_ATd_i1PbnRryChox8GczAv98HQ9y-fGwCx8gFS1si-BvEy0WGg6ft4t/s640/blogger-image--128813953.jpg" /></a></div>Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com0tag:blogger.com,1999:blog-5137100849150244300.post-37734235573693380612012-12-11T18:10:00.001-05:002012-12-11T18:21:42.238-05:00E to the E to the GEEE!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjd5fashWP-I2qdTokZ7_vYAZ-Mk_dqqFey2GcMEgUSwJE_pVlGoUSwwXm4z9lwjAkKzfRgGmwmpgKaHHCuQRpS3N3QbdxL_3ENPXeHuUjFHg1x0q3e7hjlUaOCgJOgIfLmnRNKHvDc5nf8/s640/blogger-image-1660139158.jpg" style="margin-left: 1em; margin-right: 1em;"></a> <br />
This weekend Simon had another EEG. It was our second one, though the last one was just a few months ago. Because of the results of that first EEG and the subsequent diagnosis of ESES; frequent, repeated EEGs and other fun tests (like MRIs, blood draws, and neuropsych evaluations) have become a regular part of our "new normal."<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjd5fashWP-I2qdTokZ7_vYAZ-Mk_dqqFey2GcMEgUSwJE_pVlGoUSwwXm4z9lwjAkKzfRgGmwmpgKaHHCuQRpS3N3QbdxL_3ENPXeHuUjFHg1x0q3e7hjlUaOCgJOgIfLmnRNKHvDc5nf8/s640/blogger-image-1660139158.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="319" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjd5fashWP-I2qdTokZ7_vYAZ-Mk_dqqFey2GcMEgUSwJE_pVlGoUSwwXm4z9lwjAkKzfRgGmwmpgKaHHCuQRpS3N3QbdxL_3ENPXeHuUjFHg1x0q3e7hjlUaOCgJOgIfLmnRNKHvDc5nf8/s320/blogger-image-1660139158.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: left;">Simon wasn't at all happy about having his head filled with glue, tape, probes and wires but he tolerated it SO much better this time around. There were some significant things we did to prepare that I think helped. <br />
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<i>1. We obtained a few of the leads in advance and using tiny hair clips we played with them and practiced wearing them for the past 2 weeks. Using them in this way took some of the "scary" out. We also visited the room the study is held in and just hung out for a little while under non-threatening circumstances. I think knowing where we were going and what was being used helped Simon feel more comfortable. <br /><br />2. We started talking about the EEG days before it happened and I got Simon to help me prepare for it. The day of, we discussed the "Doctor Sleepover" and Simon helped pack his lovies and chose his PJ's and snacks. <br /><br />3. We added in some fun distractions and rewards to focus on when the going got tough. I bought several tiny toys from the dollar bin to pull out when he got too stressed. I loaded his iPad with a few fun new apps to play during the procedure. Finally, I got a video with his very favorite characters (teletubbies!) to work for -- we played it as soon as he was all wrapped and ready to go.</i></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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Though they are a necessity, tests like this are very stressful for a little kid (heck, they sometimes drive this momma to drink...), so I've been actively seeking ways to make them less traumatic for Simon. Therefore, to help him cope, I've enlisted the help of a behavioral psychologist that specializes in kids with needs like ours. I've also applied my own creativity to the problem as best I can and am continuing to look for ways to make things better.<br />
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I'm pleased to say the effort has made an enormous difference. Our last EEG involved a lot of screaming, crying, and kicking (not to mention what Simon did!). Though, I can't say Simon enjoyed the process, this time around he was a LOT more comfortable and we were able to work through the rough patches without having to put anyone in a headlock. Now that's progress!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_dIN7ftUH4k5qXbwpxOObP5sO8DwN55FLfw-lhRUx8pPGHciiNTgjwwemKvWiKbEmd-hCExTY0xjTbJpB6p-GAvGE3AdZb3EUTDZoh1rzZB4U0yth2wqmM6rLRCFnkTg1JmYEx98Kfbfe/s640/blogger-image--886002893.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_dIN7ftUH4k5qXbwpxOObP5sO8DwN55FLfw-lhRUx8pPGHciiNTgjwwemKvWiKbEmd-hCExTY0xjTbJpB6p-GAvGE3AdZb3EUTDZoh1rzZB4U0yth2wqmM6rLRCFnkTg1JmYEx98Kfbfe/s320/blogger-image--886002893.jpg" width="320" /></a></td></tr>
<tr align="left"><td class="tr-caption"><i>All wrapped up and ready to go! Simon enjoyed popcorn and a new teletubbies video as a reward for being as cooperative as possible while getting connected to the EEG.</i></td></tr>
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Unfortunately, the results aren't quite what we had been hoping for. Though it is improved, his EEG is still very abnormal and filled with subclinical seizure activity -- looking for all the world like silly string streaming through his subconsciousness. I noticed it right away (I did a fair amount of peeking at the screen during the test, I am getting pretty good at this neurology stuff...) but his actual neuro confirmed my "diagnosis" today at our follow-up appointment.<br />
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For now, this means that the current medicines we have been trying aren't enough. Because surgery isn't an option, more medicines have to be tried. They have already increased the meds he is on (and which he isn't tolerating particularly well -- he is tired, irritable, and vomiting at least a couple times a day), and we will do another blood draw next week to see where he is with those. In the meantime, our quadrant of neurologists will confer to see what other medicines we should try next.<br />
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I'm worried about what more drugs will do to Simon (I am also worried about his resistance to the drugs since it is already an issue...), but I am also trying to focus on the positive. Since we have uncovered the ESES and have started to treat it we have seen global improvements in Simon's awareness -- especially his eye contact and use of language. Every day he does something that surprises me -- whether it is using a pronoun correctly, asking a new question, or building with duplo blocks (for the first time EVER!) and pretenting to be a giraffe -- our days are a mixture of worry and miracles. Though they make strange bedfellows, I am learning to adapt to it. It used to be that my go-to phrase where many things Simon were concerned was <i>"It is what it is."</i> Now, I find that <i>"Carpe Diem"</i> is a more frequent and fitting mantra.<br />
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I think I am going to need a new necklace...<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjODdTBpdr5cGCiLCgqz5Q1KmF4TBJRqjrI3xdpi0UX9PGp1p4bBHCL36IVJkOQPkNWtfZOzXiNT_qkAJjTdlkkAs5uIIBTjFO-tPUPYBf-IUJiMMqT1fZq0PXrTq2njrnzcSYWF-Orlg6D/s1600/il_fullxfull.229388855.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="245" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjODdTBpdr5cGCiLCgqz5Q1KmF4TBJRqjrI3xdpi0UX9PGp1p4bBHCL36IVJkOQPkNWtfZOzXiNT_qkAJjTdlkkAs5uIIBTjFO-tPUPYBf-IUJiMMqT1fZq0PXrTq2njrnzcSYWF-Orlg6D/s320/il_fullxfull.229388855.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://www.etsy.com/listing/70498091/carpe-diem-rustic-copper-sterling-silver?ref=sr_gallery_32&ga_search_query=carpe+diem+necklace&ga_view_type=gallery&ga_ship_to=US&ga_page=1&ga_search_type=all" target="_blank">Carpe Diem necklace on Etsy...xmas present to self? </a></td></tr>
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Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com0tag:blogger.com,1999:blog-5137100849150244300.post-77727056074600124372012-11-27T20:22:00.001-05:002012-11-27T20:22:17.995-05:00ResultsThis afternoon we got the results from the MRI Simon had last week. We had been hoping that through more detailed imaging we would find a clear path for surgery, so that the area(s) causing the seizures and ESES could be removed. We were told that if possible this would be Simon's best option since it is likely he will become resistant to medicines at some point. Unfortunately, today we learned that there is no clear path for surgery without significant risk. <br />
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This is definitely a setback, and at the moment, the news is pretty hard to bear. In fact, I think the only thing worse than hearing that there is something very wrong with someone you love is learning that there isn't a cure available.<br />
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There are, however, treatment options. There are a variety of medicines to try and we will exhaust them all if necessary. In fact, we have already started and I really do feel that we have seen improvements in Simon's language and awareness since he has been on the newest med. (Unfortunately, the side effect of this med seems to be constant vomiting -- we are hoping a different formulation of the same drug will be better tolerated.) We have an EEG scheduled for December 8 and we are optimistic that it will reflect an improvement.<br />
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This isn't the news we wanted to hear, and though I am struggling to "be okay" with it all I have to do is take one look at my happy, amazing, tough little guy and know that whatever else may happen I am so lucky to be his mom. <br />
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<br />Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com0tag:blogger.com,1999:blog-5137100849150244300.post-12636370689596245162012-11-25T19:41:00.002-05:002012-11-25T19:48:26.146-05:00Speak EasyBefore I became a mom, I shied from confrontation. Served a bad meal in a restaurant? I'd eat it (or try to) anyway. Retail clerk snarky? I'd assume they were just having a bad day. I can think of dozens of examples of looking the other way, making excuses, or just plain dealing with unpleasant situations that could probably easily have been amended had I just spoken up. I was just too chicken.<br />
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This attitude changed rather abruptly the first time someone mistreated my daughter in front of me. At that moment, the momma bear that clawed her way outta my chest shocked me more than the surly subject of my angst. I learned to anticipate the momma bear and mitigate the reaction more judiciously over time... until I had my son and became a <i>special needs</i> mom. Suddenly, I found that I was no longer a momma bear -- I'm a momma saber-toothed tiger. I also discovered that my hackles raise not only when I feel my son has been mistreated, but when I see ANY special needs person being dealt with unfairly. Although it is often uncomfortable, and I wonder how many times I cross the line between advocate and pain-in-the-ass (if there is a line.. they might actually be one in the same thing) doing nothing is no longer something I am okay with.<br />
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So last year, when I attended the huge public fundraiser for the organization we go through for a lot of Simon's therapy and medical appointments, I was pretty upset (okay, shocked) to see that there were no (NO) accommodations made for people with special needs. Families with people in wheelchairs and special needs strollers could not fit in the eating area because the tables were too closely packed together. The craft projects and games were far too involved for kids with fine motor challenges and there were no easier options or adaptations offered. The crowds and activity were too intense for kids with sensory issues and there was nowhere to take break from it. Most heartbreaking of all, none of the rides were accessible and I saw special needs kids observing the fun from afar, unable to take part in an event that was supposed to be about them. In fact, nowhere was it apparent what the fundraiser was really about or who it was for. The fact that the organization served people with disabilities was almost completely buried. I left the event feeling very sad and just a little bit angry. <br />
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On facebook the next day the organization asked people for feedback on the event. Though I hesitated, and I think I probably re-wrote my comment about fourteen times, I left a message saying that; though I appreciated the fundraiser, I was sad to see that the people they serve were left out of the planning. My comment prompted a request to take the conversation "off-line" (uh oh) and so I sent them an email outlining the things I had seen that were a problem and made what I thought were pragmatic suggestions about how they could be addressed next year.<br />
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It simultaneously felt good and bad to write that email. On the one hand, I knew I knew what I was talking about. On the other, the last thing I wanted was to piss someone off at an organization I frequently went to for help. In fact, after I didn't hear back for a few months I was pretty sure I had offended someone. I was hoping my name wasn't highlighted on some "parents to watch out for" list... (I am <i>sure</i> there is a list somewhere!).<br />
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However, about six months after I wrote the email I met someone from the events department at my old high school's career day. We had both been asked to come present to the students and while we were waiting we got to talking and I learned that my email had been reprinted and posted for everyone associated with the event to read. It had inspired brainstorming sessions internally, and my suggestions were being turned into action items. Not only had they not blacklisted me, they actually appreciated the fact that I wasn't just an "angry parent," I was a constructive critic trying to help make things better. <br />
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We just got back from this year's event and I was pretty thrilled to see that EVERY SINGLE idea I had presented was utilized, plus some. In the eating area, the tables were spread further apart and there was space reserved for people with disabilities. There was a wider range of craft projects and activities. There was a "quiet corral" with dim lights, quiet activities and bean bags for kids who needed to take a break before having a melt-down and needing to leave. Everywhere posters were present spreading awareness about living with disabilities and inviting attendees to get involved by simply texting a donation. Best of all, the carousel was wheelchair accessible. Seeing a kid in a chair RIDE this year instead of being left behind was maybe the best holiday present I could get. <br />
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One day, I would like to see this event become 100% accessible, and the organization become the model of inclusion that I know that they can be. I plan to help them get there any way I can. In the meantime, I've learned a pretty awesome lesson. Saber-toothed tigers can change the world for the better, one constructive critique at a time, one creative partnership at a time.... one carousel ride for one special needs child at a time.<br />
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Happy Holidays!<br />
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<br />Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com1tag:blogger.com,1999:blog-5137100849150244300.post-61965351533855869732012-11-20T18:32:00.000-05:002012-11-20T18:35:15.342-05:00The little things that are big things that I am grateful forToday was a tough day. Any day you have to take your child in for a medical procedure -- whether it is a simple vaccine or a necessary surgery -- is a tough day. Though you know that you are doing the right thing in caring for them, seeing your baby in distress or hurting is just not good.<br />
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This was Simon's 4th MRI so I knew what we were in for. Abstaining from food, getting IVs, getting sedated, coming out of sedation very angry, vomiting, visiting Neurosurgery to get the shunt reprogrammed, and then an hour or so drive home in DC traffic. Yuck. As grateful as I am that things like MRIs exist to help us care for our guy I'd been dreading it (and fearing the outcome) since I scheduled it.<br />
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Last night, when I expressed my worry via social media I got a flood of love (and cookies!) from so many friends. I am so grateful. Knowing that so many folks are routing for us is huge. Every little message of encouragement, every new friend I make that reads the blog and sends love, everyone that offered cookies, wine, a partner to be a hot mess with, or just said good luck (my mom even did my dishes and made us dinner) made me feel a lot more positive and a little more sure I could keep on keeping on no matter what the road ahead looks like. <br />
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Fortunately, today things went a lot better than I thought they would. For one thing, the shunt malfunction we were concerned about is not an issue. Or at least not an immediate one (something else is causing all the vomiting, which is now nearly constant.. poor Simon has already lost weight and is constantly hungry), so there was no need for the emergency surgery I was braced for. For another thing, this was the first time we had an MRI done at Children's National instead of at Johns Hopkins and the difference was immense.<br />
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At Children's they do something that STUNS me simply because I haven't experienced it before. They put the child first. At every visit we have been to, every step of the way, we are accompanied by a child-life specialist whose sole job it is to make the child as comfortable as possible (which directly translates into the comfort of the parent!). Today, our CLS brought Simon the medical equipment to play with before it was used on him. She found out what his favorite video was so she could have it playing when he went under sedation. She checked on him and on us throughout the procedure.<br />
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Additionally, everyone we encountered expressed the desire to do things in the least traumatic way for Simon. Instead of placing an IV first (like they have done at Hopkins), they sedated him first using his choice of flavored gas while his favorite video played. They waited to undress him and draw blood until after he was under. They assured us his safety was their first concern and they checked in midway through the procedure (during which time we were encouraged to grab some lunch) to let us know Simon was okay. Instead of having to take an angry and drugged Simon to the neurosurgery department to get his shunt reprogrammed they came to visit him in recovery to set it while he was still sleeping. When we came to find him, he was wrapped snugly in his favorite blanket and being fed a popsicle with his eyes still closed -- which cut WAY down on the angry post-procedure Simon we are used to.<br />
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A lot of small things, but what a big difference. I'm grateful for all of it. And, since we are so close to Thanksgiving I want you to know, dear reader, how grateful I am for you. This blog means a lot to me and knowing my words aren't going out into a vacuum is a big deal. Also, after spending so much time in hospitals recently, I'd encourage everyone to be grateful for their health, and the health of their loved ones. Hold your babies close friends -- we should never take a moment of it for granted.<br />
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<br />Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com3tag:blogger.com,1999:blog-5137100849150244300.post-1239156342614885662012-11-19T19:39:00.000-05:002012-11-19T19:39:36.128-05:00Captain's LogI know it has been a long time since I posted, and so much has happened in the interim. Hurricanes and Halloween, new doctors near and far, bidding a temporary farewell to our furriest family member, and myriad blood tests, medicines, and therapies. Not to mention all the "normal" stuff that goes into family life on a daily basis. It has been busy.<br />
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But, in my book, busy is (mostly) a good thing. Especially when having too much "down time" leaves me free to worry about the what if's. However, despite the frenetic pace we've been maintaining, life may be about to get crazier. The upcoming schedule of medical tests for Simon (we are hoping both an MRI -- tomorrow -- and his EEG -- this weekend? -- will be able to be done this week) may indicate that we are actually nearing the end of the short calm before the storm.<br />
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Batten down the Hatchers!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2buBr6r8hi2TNdxV-fzRnn0KNhot1mOXh2Oiq7v0Z_7X0kEbQeu5wFOXnWK1Os-qsnSUFv34uyRs74vYa823alAcKrpolq7SvvhK2GZRXa8k8vQ8VIO4rK1RTckQLQGj0hw0eUVjmS32O/s640/blogger-image-1750899156.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="319" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2buBr6r8hi2TNdxV-fzRnn0KNhot1mOXh2Oiq7v0Z_7X0kEbQeu5wFOXnWK1Os-qsnSUFv34uyRs74vYa823alAcKrpolq7SvvhK2GZRXa8k8vQ8VIO4rK1RTckQLQGj0hw0eUVjmS32O/s320/blogger-image-1750899156.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We were very lucky to make it through the storm without damage, or even power loss. We were happy to share our blessing by making donations at our neighborhood food truck gathering event!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6hF3d-vlpV4u_VJfOUiUtYultQgQuMCMIWHwqu-UPqvmd5uxnnJQkZUdOdRvBAHubX22bQ61iuILSgN0Jt5ptx3qLeTwqoVMLhaRsuDtZ9YR3TuxiOrVElezNcjeBdZT8-yq8efmZgGZC/s640/blogger-image--482709580.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="319" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6hF3d-vlpV4u_VJfOUiUtYultQgQuMCMIWHwqu-UPqvmd5uxnnJQkZUdOdRvBAHubX22bQ61iuILSgN0Jt5ptx3qLeTwqoVMLhaRsuDtZ9YR3TuxiOrVElezNcjeBdZT8-yq8efmZgGZC/s320/blogger-image--482709580.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Simon and Tigger were both Pirates for Halloween (of course). Being able to "do" kindergarten again with Simon truly makes me feel lucky!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTK-omquR6X1p3_UXfIc8l75o1KFk7-enyh-OKzLaGlhbZp58BHrJ7W-6xpM2fwJ4HZMWKEiFTmwHJ31qQ8dm-TgUuOp53YvjkiLR-xOzEZbEghpIIYkl5dVZOmhE23D1daC4iKdX1_gVp/s640/blogger-image--2037724269.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTK-omquR6X1p3_UXfIc8l75o1KFk7-enyh-OKzLaGlhbZp58BHrJ7W-6xpM2fwJ4HZMWKEiFTmwHJ31qQ8dm-TgUuOp53YvjkiLR-xOzEZbEghpIIYkl5dVZOmhE23D1daC4iKdX1_gVp/s320/blogger-image--2037724269.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Saying good-bye to Tigger until March, when he will have finished his training and become a fully certified service dog. We can't wait to have him home!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjisXa_aiLltBWe6t9a5InOS7zmTYkF0t52Nw7DZ2WP1H7YHMskTHmdsFpDrQOReguV8BWWqZiWh0hDLyq3POi6DpL-oP7vYo9Hnk7JKwtgfC8q1y6f3I7VlYtKYRbfCZBp4pM8OAjKHNo_/s640/blogger-image--1627636428.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjisXa_aiLltBWe6t9a5InOS7zmTYkF0t52Nw7DZ2WP1H7YHMskTHmdsFpDrQOReguV8BWWqZiWh0hDLyq3POi6DpL-oP7vYo9Hnk7JKwtgfC8q1y6f3I7VlYtKYRbfCZBp4pM8OAjKHNo_/s320/blogger-image--1627636428.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We have added a new member to Simon's team -- a behavioral psychologist that specializes in helping kids cope with the stress of their medical conditions. Right now she is working with us to help find techniques to help Simon stay calm and be less afraid during scary tests, like EEGs. Here Simon is putting the leads on himself (after he put several all over my head for practice). </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7Ttig38WpmzDV2CbINvhgFwWwZuiinCda3ZjeA2gTgW9lKqWV7SQqXs9cEhdtuSeTulb-9s0eyn9fP5jtJKUmbxOVOpxi3DydCljRqtWqVqwPYCxiVR2GiMFO463-NAufcshnxrLQnDvv/s640/blogger-image--1186134602.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7Ttig38WpmzDV2CbINvhgFwWwZuiinCda3ZjeA2gTgW9lKqWV7SQqXs9cEhdtuSeTulb-9s0eyn9fP5jtJKUmbxOVOpxi3DydCljRqtWqVqwPYCxiVR2GiMFO463-NAufcshnxrLQnDvv/s320/blogger-image--1186134602.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We found an Epileptologist to work with us towards mapping for potential epilepsy surgery at Children's National Medical Center in Washington DC. Tomorrow we return there for an MRI to find out if Simon's shunt is functioning properly (he recently started vomiting several times a day, a sign of failure) and to see if the area they *think* the ESES is originating is operable. I'm nervous but trying to stay positive. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxJcWcmT2w70ed87p09kHCcbP4Z_AcUazNRdYtIlmeANps_T9XNmrqo8bhtjyIcEEFhgZotcV-KTPWf4k56hgbtehEnfOgY3LeIH3Qe0h2BVCiWgMuI7RNTgd-2Yr7hmv49Wemap4VaNUC/s640/blogger-image-1408750238.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxJcWcmT2w70ed87p09kHCcbP4Z_AcUazNRdYtIlmeANps_T9XNmrqo8bhtjyIcEEFhgZotcV-KTPWf4k56hgbtehEnfOgY3LeIH3Qe0h2BVCiWgMuI7RNTgd-2Yr7hmv49Wemap4VaNUC/s320/blogger-image-1408750238.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Normally, I'm a wait until after Thanksgiving kinda gal. But this year, either in spite of or because of everything that has been going on, I am determined to make it the best Christmas yet. Simon is already asking about Santa and Christmas trees and I am already decking the halls. If anybody else wants to falala -- I am your girl! </td></tr>
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Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com0tag:blogger.com,1999:blog-5137100849150244300.post-10040598538128476372012-10-22T21:41:00.005-04:002012-10-22T21:41:56.462-04:00Turkeys DownA rather southern friend of mine (shout out Susan Johnson) introduced me to a colorful turn of phrase I like to repeat to myself whenever external sources have me feeling blue, "Don't let the turkeys get you down!" (you have to say it slowly and wisely with a slight southern accent -- see if it doesn't work for you, too) has been a mantra that makes me smile and remember not to take myself, or any other turkeys, too seriously. Everything will be okay.<div>
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<div>
Trouble is, this phrase hasn't been working as well for me lately. The turkeys are pretty big and serious looking (not at all funny) and their combined weight has been getting me down. I don't know that everything will be okay and I am having trouble coping with that.</div>
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<br /></div>
<div>
I'm also starting to miss Tigger. Very soon he will be returning to Colorado for 5-6 months of final specialty training. He will be taught to recognize and respond to the physical signs of Simon's clinical seizures (on a related note we figured out that the reason he has not yet been able to alert to a seizure before it has happened is probably because Simon is having seizure activity all the time. Tigger probably thinks it is normal... the kid must always smell like seizure!), he will be learn how to protect Simon and keep him safe, and he will be trained to assist Simon with balance and mobility.</div>
<div>
<br /></div>
<div>
All of these things are very important and the intensive training is a necessary step, I know, but I am still dreading the separation. Over the past 6 months Tigger has become an intrinsic part of our family -- his exuberant but gentle presence makes our home a happier place. Additionally, we've seen improvements in Simon's language and empathy when he is with Tigger, and he and Simon have steadily become closer. </div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqwKTvSja2MJYmwi0hRSTrvLGYOSiwdrHJea9_jW7o26S26tR2c95ysNWOCgpYB1wO_7gQ9y7VSoV_JZjhdQu4zke5u3EfOwI8lUSaXA90-PCFFqRrYCRaKQtT5bbNr81cVP_KIVGnVd2X/s640/blogger-image-180694383.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqwKTvSja2MJYmwi0hRSTrvLGYOSiwdrHJea9_jW7o26S26tR2c95ysNWOCgpYB1wO_7gQ9y7VSoV_JZjhdQu4zke5u3EfOwI8lUSaXA90-PCFFqRrYCRaKQtT5bbNr81cVP_KIVGnVd2X/s320/blogger-image-180694383.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Simon's "too big doggie" gives the best hugs.</td></tr>
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<div>
We need Tigger's help now more than ever, and I am as sad and worried now as I have ever been. I have some big turkeys pulling on me. Fortunately, today I didn't need to look any further than Simon's backpack for a lift. </div>
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A friend's son, who has also battled epilepsy and who has been through the testing and surgery we may be facing, sent Simon a sweet stuffed puppy to brighten his day. Simon told me it was a "not too big doggie" and it does have a striking resemblance to our "too big doggie." N2BD will be good to cuddle with in the months ahead, when I am sure Simon's bed will be feeling conspicuously empty.</div>
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<br /></div>
<div>
Earlier this week I got a lovely card from a family friend with a gift intended to send Brian and I out on a date, since she also knows from experience how stressful a situation like ours can be on a relationship. Over the weekend my sisters-in-laws have called to see how we are, my parents have been helping us cope with our over-burdened schedule, and my friends have checked in and sent love.</div>
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<br /></div>
<div>
The truth is that hands are all around me trying to lift me up, and as I realize this I am reminded of something I said at the "TiggerFest" party we threw earlier this summer to recognize all the kindness we had been shown as a part of our journey to bring Simon and Tigger together: </div>
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<br /></div>
<div>
<span class="Apple-style-span" style="color: #222222; font-family: Georgia, Utopia, 'Palatino Linotype', Palatino, serif; font-size: 15px; line-height: 21px;"><i>"This year, we have gone from feeling frightened for our son's well-being, to being embraced and uplifted by our family, friends, community, even people we don't know -- together, we have experienced a true miracle, and I can't thank you enough for being a part of it. I will carry this in my heart always and I know that years from now, when Simon is encountering more challenges as we all inevitably do, I will have the story of what happened here to remind him of how loved he is, how great people can be, and how miracles really can happen."</i></span></div>
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<br /></div>
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The challenges have come sooner than I'd hoped, but the rest of what I said rings true. All I have to do when I am feeling afraid and overwhelmed is to remember that sunny day when my heart was bursting with gratitude for how much love we had been shown. All I have to do is look around to see how loved we still are. Knowing this gives me hope to believe that if one such miracle could happen, more are possible. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiwRpiNCoOGD1uhkVgs-o_QdW_dFeaKjvHgTbXicVouKqiQmAWupQtNaNaBsWzIIvXbz3FJrxW6cKir3NqKCMJnPhkhYJUGStjyWRyZeEU6nZZSEZ4BxrVLJ_qwJKTpOyQbKGEGGs9777z/s640/blogger-image--1335520966.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiwRpiNCoOGD1uhkVgs-o_QdW_dFeaKjvHgTbXicVouKqiQmAWupQtNaNaBsWzIIvXbz3FJrxW6cKir3NqKCMJnPhkhYJUGStjyWRyZeEU6nZZSEZ4BxrVLJ_qwJKTpOyQbKGEGGs9777z/s320/blogger-image--1335520966.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A very special friend from another very special friend -- thank you for this "not too big doggie" Ian Moore!</td></tr>
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Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com0tag:blogger.com,1999:blog-5137100849150244300.post-21764283839042978302012-10-15T21:14:00.002-04:002012-10-16T06:21:48.813-04:00What IsWe tried to take the weekend to rest, to regroup, to catch up. I'm not entirely sure we succeeded, but we tried. We spent time with friends, attended church and Olivia's field hockey game, caught up on work and homework, and we got as much sleep as we could manage.<br />
<br />
Brian and I tried to talk about how we are coping with our new situation. We are worried about each other. We acknowledged the cosmic sense of unfairness we feel -- Simon does not deserve to be faced with so many challenges. He does not deserve to go through all that he already has, much less all he yet has to face. In his sweetness and innocence he has done nothing to warrant being subjected to so much frightening medical intervention, tests, drugs, and surgeries. He should not need to spend so much of his precious childhood in hospitals and doctors' offices. He does not deserve to have his hard-won abilities threatened by this monstrous disorder. He does not deserve to have his young life endangered.<br />
<br />
We don't deserve to go through this. No one does. We are frightened, and angry, and overwhelmed. We tried to comfort each other, but in the end the best we could do was sit beside one another silently crying. Which, in its own way, was comfort enough for now.<br />
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But, being me, I can't sit still for long. Maybe one day I will fall back, but not yet. Now is a time for doing. So I am spending a lot of my time researching, and talking to multiple neurologists. We learned a lot in our meeting with Dr. Riviello and I need to figure out how to act upon it.<br />
<br />
We learned that Simon's ESES is pretty severe and has most likely built gradually over time (how much time no one knows). I actually saw surprise register on the kindly doctor's face when he scrolled through the EEG and saw the unceasingly wild and wavering lines. He diagnosed Simon as having <a href="http://www.epilepsy.com/newsletter/feb12/csws" target="_blank">CSWS</a>, a syndrome within the syndrome of ESES. Based on this, and on Simon's repeated status seizures (which the doctor was also very worried about), he feels we need to proceed aggressively with treatment. <br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6OTQ-f-lii8JNhIrmJEKwOGSOrXxaR-pB_nbDshU3pKncrdfjp3kHiuW5mwBPEposJyXhGT_L3N0o_HWB6RrdVRTe32QoU7rpeaSXePtd7bdYMo2TLILkvz1STdVSktK78zuu1DvPGT0N/s1600/normaleeg.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6OTQ-f-lii8JNhIrmJEKwOGSOrXxaR-pB_nbDshU3pKncrdfjp3kHiuW5mwBPEposJyXhGT_L3N0o_HWB6RrdVRTe32QoU7rpeaSXePtd7bdYMo2TLILkvz1STdVSktK78zuu1DvPGT0N/s200/normaleeg.jpg" width="200" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">This is what a normal EEG looks like during sleep</td></tr></tbody></table><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDzc5cxKnIPJ8rl5ZACqg5_xzbT1u5Tk7DFWG3IDBYQUguNaB4lsQKk392Dev2mGwaAo4E9y3nD_bTYqfGO-o6oXBylQwlyWgh588_MLZR_xje6KWO_R7IJC-4ZtYGJlRzw-lbg7AYmc9r/s1600/simoneeg.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDzc5cxKnIPJ8rl5ZACqg5_xzbT1u5Tk7DFWG3IDBYQUguNaB4lsQKk392Dev2mGwaAo4E9y3nD_bTYqfGO-o6oXBylQwlyWgh588_MLZR_xje6KWO_R7IJC-4ZtYGJlRzw-lbg7AYmc9r/s200/simoneeg.jpg" width="200" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">This is what Simon's EEG looks like during sleep.</td></tr></tbody></table>The first thing is to try to control the epilepsy with more aggressive drugs and to frequently test their efficacy with overnight EEGs. If the more standard epilepsy drugs do not work, we move to high-dose steroids that are so heavy-duty they have to be given inpatient via IV for 3 days at a time. Ultimately, however, based on Simon's history of refractory (drug resistant) epilepsy and Dr. Riviello's experience with kids like Simon, the projection is that the effect of the drugs will not last indefinitely and we will most likely need to pursue a surgical solution.<br />
<br />
Regarding surgery, we got more bad news when the doctor reviewed the MRI of Simon's brain. The best case senario would be to pinpoint exactly where the seizures are originating on the EEG, and then in reviewing the MRI find a corresponding area of damaged tissue which could be isolated and surgically removed without risking further harm. We do not have a best case senario. Although we know from the EEG that Simon's seizures are primarily coming from the right side of his brain, and though we can clearly see the damage done from the stroke, it is diffuse throughout the right side. Dead tissue is mingled with healthy tissue and we can't easily tell what Simon is using and what could be removed to help him without creating further injury.<br />
<br />
So.... what do we do now? First, we start with drugs to try to control the syndrome as quickly as possible. We started this last week and are continuing to make adjustments and get bloodwork to test levels. Once Simon is at a therapeutic level we will get another EEG. If this works for now, great. If not, or if it stops working, we move to the steroids. I have already discussed setting this up locally with our neuro.<br />
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In the meantime, for the past 3 days I have been calling and emailing with multiple neurologists to try to find ANOTHER doctor to help us with the extensive and highly specialized testing that will need to occur (and which can take a very long time to do) to determine if Simon's epilepsy is operable and, if it is, to "map" that surgery for us and work with a neurosurgeon to implement it. Currently, I don't know where we will end up for that. We are discussing options in New York, Washington, Philadelphia, and Cleveland.<br />
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Right now, I don't have time to sit and cry silently. Though I think I have always been tough, and for a long time I have been trying to be a super mom (for both my kids) and an impassioned advocate for my special needs son; over the past two weeks I have felt myself evolving into something else entirely. Harder, more intense, more determined. A dragon mom? A warrior mom? I don't know yet. I don't quite recognize this more ferocious version of myself. Though I am reluctant to embrace her, I am also glad she is there. I think she will hold me together, and I hope she has enough strength to hold Simon, and Brian, and Olivia, too. I am frightened of what is to come, and how our world may change (has already changed), but I know I cannot stop it or change it or wish it away. "It is what it is" (a phrase I have a long history with) but also I know that I am who <i>I</i> am, and I am going to kick <i>It's</i> ass.<br />
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I hope.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKlpPolA0Bm23so3vGGoyW8hv-2U8AoZDfmKd5dlnkwvNDQ9iE-b9-HbHNeEwLpImqG2kDkIBz9_OquYgXWIo0Ig9Bf9XqPY8GYU3vlUfU2y03zdJN-eOvzSBhPN8txIWS8JTUHCzxD5EA/s640/blogger-image-658796500.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="319" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKlpPolA0Bm23so3vGGoyW8hv-2U8AoZDfmKd5dlnkwvNDQ9iE-b9-HbHNeEwLpImqG2kDkIBz9_OquYgXWIo0Ig9Bf9XqPY8GYU3vlUfU2y03zdJN-eOvzSBhPN8txIWS8JTUHCzxD5EA/s320/blogger-image-658796500.jpg" width="320" /></a></div>Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com0tag:blogger.com,1999:blog-5137100849150244300.post-75237022324164599602012-10-11T21:36:00.000-04:002012-10-11T21:41:08.974-04:00Simon and Tigger take ManhattanToday we went to meet the ESES specialist in New York. We decided to take the train to make things as quick and easy as possible, and because we thought Simon might like it (he did). Finally, after about 10 hours of traveling and 2 hours of meeting with Dr. Riviello at NYU, we are home. <br />
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It was a very long day, but a successful one. Thank you to everyone that reached out to us today to tell us you were keeping us in your thoughts and prayers. Overall we learned enough to simultaneously give us hope and terrify us. I daresay that in the two hours we met with the good doctor we learned more than most doctors will ever know about ESES. Indeed, as Dr. Riviello pointed out -- this condition is so rare (it effects less than .2% of the patients presenting with childhood epilepsy) that it is often up to the parents to become the authority on their child's condition in order to care for them. Fortunately, that is a role I am already used to.<br />
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And it is a banner I will take up again in the morning. Right now, we are weary in every sense. Simon and Tigger have been tucked into bed and Brian and I are tucking into some sushi and a beer (or 2). We keep starting conversations about what we learned.. and then dropping them. We are still processing it all. We don't yet know what to think, much less what to say.<br />
<br />
Rest assured, however, another post will follow soon. I will share what I know, what I have learned, and what our next steps will be. Thank you again for reading, and for opening your hearts to us. We feel the love and are using it to help us stay positive and focused on one step at a time. Our little man needs us all in top form. <br />
<br />
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<tr><td style="text-align: left;"><br /></td><td style="text-align: left;"></td><td style="text-align: left;"></td><td style="text-align: center;"><br /></td><td style="text-align: center;"><br /></td><td style="text-align: center;"><br /></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkIKXXnSkZeJI4gPTAtnXlh1h_aMP2_BiEBfrblbuRwkEAGwPmSEJVPUc22W4QaBlrKTbhlfM3KsRYenokTkuQKlQ1x0_4RZeZzWSH40I1SWsPHf7D6x6YgAalYsHbUyZPvKSidcvgEU0S/s640/blogger-image-431608960.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkIKXXnSkZeJI4gPTAtnXlh1h_aMP2_BiEBfrblbuRwkEAGwPmSEJVPUc22W4QaBlrKTbhlfM3KsRYenokTkuQKlQ1x0_4RZeZzWSH40I1SWsPHf7D6x6YgAalYsHbUyZPvKSidcvgEU0S/s320/blogger-image-431608960.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We took the train and got an early start this morning. Simon was super
excited to be on a train -- he kept singing the "Chuggington" theme song
and offering to take everyone's tickets. Tigger wasn't quite so keen on
the experience. He settled down after a little while, though, and took a
nap. Good thing since the walk to the office from Penn Station was just
a tad over a mile.</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXIr-gd5shzY8yrLa_V7Sli2w_vUxRwWfsSu-l-2iHHVnNil_DNESDOaFmp3It8XkE_S0dZ9lLKeVgfoE-ETbkHU7OlksSC_5cUn38a1t_pyY887yidXLkPuw92rNAZF-TXNCwYCSVp_Bm/s640/blogger-image-1525827948.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXIr-gd5shzY8yrLa_V7Sli2w_vUxRwWfsSu-l-2iHHVnNil_DNESDOaFmp3It8XkE_S0dZ9lLKeVgfoE-ETbkHU7OlksSC_5cUn38a1t_pyY887yidXLkPuw92rNAZF-TXNCwYCSVp_Bm/s320/blogger-image-1525827948.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tigger
and Simon made their typical grand entrance to an adoring crowd at the NYU Epilepsy Center.
They are rockstars... Brian and I are just part of the entourage.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpIFUiEpcVzoRZgx8BsjyeVxTWipt5dd851RCewNgw7P0ddtk8YvX9lQiUYQ8yWNpIZAXwF41TUdmfKpod4Omw0usj_qyuT4WGKxlGYtmltDdk1Ns-fYK6cxmZ8bzkPVZ7jB3I8MmCrVSb/s640/blogger-image--1797179182.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpIFUiEpcVzoRZgx8BsjyeVxTWipt5dd851RCewNgw7P0ddtk8YvX9lQiUYQ8yWNpIZAXwF41TUdmfKpod4Omw0usj_qyuT4WGKxlGYtmltDdk1Ns-fYK6cxmZ8bzkPVZ7jB3I8MmCrVSb/s320/blogger-image--1797179182.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">As
usual, we bribed Simon with a sandwich to get him to cooperate through the
2-hour-long appointment. Tuna on rye from an authentic NYC deli... what
could be better than that?</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAhBpCmZZ04n64GDzNN7EXrAgB7YLE298bmn-ke7RK9ReK54BYaqKiR9zCSYKURsN7xrWbf8J1Ff_7IYubHzjeDFMi3uhgeqo2I0zh4IzrDulnPE1tkI2YaL_FpOupVLOTmXBOAAmlw-JQ/s640/blogger-image-2112860520.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAhBpCmZZ04n64GDzNN7EXrAgB7YLE298bmn-ke7RK9ReK54BYaqKiR9zCSYKURsN7xrWbf8J1Ff_7IYubHzjeDFMi3uhgeqo2I0zh4IzrDulnPE1tkI2YaL_FpOupVLOTmXBOAAmlw-JQ/s320/blogger-image-2112860520.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My boys.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX9wduYmkxKkwISf-OtWTfxdp_MIGY-PddRM-mgHXzc6TOzQ-IsoJV5ZKB2wHM2YJdsYWbCtA-3YjCLyphue6EeRviKTjA7eh85yr53l-wITmK7go7jfNjLD0-xhgPIdjk9sCK6YtIgLIx/s640/blogger-image--1189837209.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX9wduYmkxKkwISf-OtWTfxdp_MIGY-PddRM-mgHXzc6TOzQ-IsoJV5ZKB2wHM2YJdsYWbCtA-3YjCLyphue6EeRviKTjA7eh85yr53l-wITmK7go7jfNjLD0-xhgPIdjk9sCK6YtIgLIx/s320/blogger-image--1189837209.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bye-bye city!</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG1DbisJQvGVW5m9SOdGpmiHrD_XwnsAHb5-7RsWLicrKfF5v3cXb0UxeMXRkn8i4s8lbdasq-ifJ7YXyJd7NIdKrLaOw9d0XaR56nkeGkJBB3Ht8y8zO8sSBmKSMEbJCGGc9mUMO8uh3U/s640/blogger-image-306359502.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG1DbisJQvGVW5m9SOdGpmiHrD_XwnsAHb5-7RsWLicrKfF5v3cXb0UxeMXRkn8i4s8lbdasq-ifJ7YXyJd7NIdKrLaOw9d0XaR56nkeGkJBB3Ht8y8zO8sSBmKSMEbJCGGc9mUMO8uh3U/s320/blogger-image-306359502.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naptime
on the train for a very tired Tigger (Brian fell asleep too...). It was
a long day after a long week. Now, it is definitely time to get some
rest, take a little time to process all of the information (and emotion)
we are faced with, and then--sharpen our swords and our determination.
We will beat this. We have to. </td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com1tag:blogger.com,1999:blog-5137100849150244300.post-58187171767545799412012-10-09T20:12:00.001-04:002012-10-09T20:12:07.082-04:00Making changes<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw42RIvNI-MaphxmGnSyM1I0ZxEnbL0DbqiM4Kc_6lT-x21k7oae7wZ1YRoaTQBcEhAThTtqd4PINe7zE2V9gQPbsDtICXk1cf8gHoQHtidUXPUIqieRmlZx3gsGElOxkp3u2cR1ap8JHr/s640/blogger-image-844113205.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw42RIvNI-MaphxmGnSyM1I0ZxEnbL0DbqiM4Kc_6lT-x21k7oae7wZ1YRoaTQBcEhAThTtqd4PINe7zE2V9gQPbsDtICXk1cf8gHoQHtidUXPUIqieRmlZx3gsGElOxkp3u2cR1ap8JHr/s320/blogger-image-844113205.jpg" width="320" /> </a></div>
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This is a photo of Simon's current night-time meds. It is practically enough to make a small meal of and it takes almost the same amount of time to prepare and feed it to him. The capsules need to be broken and combined with yogurt and fed to Simon. The liquids need to be taken slowly to prevent gagging, and the chewables come last... after dinner mints?</div>
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The "me" of two years ago would have been horrified to be pumping my son full of drugs. The me of today is just grateful that there is <i>something</i> to help Simon outside of the MAJOR brain surgery which is already being discussed. I'm hopeful that this cocktail is the most I will have to administer, but I know that more meds are on the horizon and will be our next steps in treatment. </div>
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Today we met with Simon's neurologist to review the actual EEG, get bloodwork, discuss new medicines (and their side effects) and schedule our next EEG for later this month. We pulled together paperwork and older test results for our meeting with Dr. Riviello on Thursday. We discussed how we could work all together as a team moving forward. Again, I realized that the me of two years ago would have been horrified to be surrounded by so much medical intervention, tests, and hospital time. The me of today is just grateful that we have the resources to get the help we need.</div>
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Sometimes I think that the me of two years ago would not recognize the me of today. I wonder if she would look on who I have become with a mixture of pity and/or misplaced judgements. Occasionally I'll see a reflection of my former self -- the confident and self-congratulatory mother of relatively healthy and well-behaved children -- in the eyes of another woman and I realize how far I have come and how far I yet may have to go. I see all in a moment how much I have grown, and I silently pray for that woman I don't know, that woman I was, that she may never have to walk down this path with me. I pray that she may gain the wisdom of a kind heart without ever having to go where others (including myself) fear to tread.</div>
Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com0tag:blogger.com,1999:blog-5137100849150244300.post-89677772090517367442012-10-08T23:22:00.000-04:002012-10-09T10:50:07.898-04:00The EEGIt has been a while since my last post, and a lot has happened in the interim. Summer turned to Fall, schedules got crazier, and Simon has had a few more seizures. Not knowing what else to do medication-wise we decided to do an overnight EEG (<span class="st">electroencephalogram) with Simon to see if we could capture any information on his seizures that would help lead to more targeted treatment.</span><br />
<span class="st"><br />
</span><span class="st">The EEG itself is non-invasive -- basically a whole bunch of sticky electrodes are placed all over the head and chest of the person being tested -- but it was still pretty traumatic for our little guy. I did my best to make the test as easy on him as I could, preparing him through viewing social stories and you tube videos of the process, and then trying to put a positive spin on it (I called it a "hospital sleepover with stickers!" I even brought popcorn and a new video), but he wasn't having any of it. As soon as he saw a hospital bed and a bunch of wires he imploded and we spent the first several hours of the test just trying to calm him down and hook him up. Eventually, we succeeded and he did fall asleep. The next morning the technician unhooked us and we were sent home after being told it would be 2 weeks before we could see any results.</span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGE7P7wn3dTfBtcNIbT7_yDRwWWeRGr-ZgeCeFLaCVpIJQUsvi5Bg8AcmeXNgImZalNuiEECPy2xCdSAUBm6vqJDWagtw4nHbJriUwqBmf49N78GkJZfQ4RHKW-2EtpyNWWC78HsKkgVHX/s640/blogger-image-1648484857.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="319" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGE7P7wn3dTfBtcNIbT7_yDRwWWeRGr-ZgeCeFLaCVpIJQUsvi5Bg8AcmeXNgImZalNuiEECPy2xCdSAUBm6vqJDWagtw4nHbJriUwqBmf49N78GkJZfQ4RHKW-2EtpyNWWC78HsKkgVHX/s320/blogger-image-1648484857.jpg" width="320" /></a><span class="st"><br />
</span><span class="st">I doubted we would find anything from the EEG. Our doctor wanted to keep Simon on his meds for it to get a "baseline" view and he had no seizures while we watched over him (all...night...long). I left thinking that the effort was futile and we would have to repeat the process another time without medication in order to learn anything.</span><br />
<span class="st"><br />
</span><span class="st">I was half right.</span><br />
<span class="st"><br />
</span><span class="st">We will be repeating the process, many more times, but not because we didn't catch anything. As it turns out, we caught a lot.</span><br />
<span class="st"><br />
</span><span class="st">Monday I got a call from our Neurologist saying that the results were in, they were interpreting them, and she wanted to let me know that they had noticed some abnormalities. She asked me a lot of questions about Simon's development and progress. She specifically wanted to know when we started to notice any autism-like behaviors. She explained that there are epilepsy syndromes related to the abnormalities they found and she needed to do more research to be sure of what we were dealing with. </span><br />
<span class="st"><br />
</span><span class="st">I tried not to freak out (too much).</span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQxXCH3k-J5ZBLUyu26LyE6xYKaH76622jrunI6V3VAPxOzPuEsGfAYaj38vsUQAi0GxltBkXEtK8fIZO7gCrDtMGnUhcugWvJyuSQ64EIote24t1MbtbERUFldR-1k0ndfDHq5EPgAYxx/s640/blogger-image--24799051.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="319" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQxXCH3k-J5ZBLUyu26LyE6xYKaH76622jrunI6V3VAPxOzPuEsGfAYaj38vsUQAi0GxltBkXEtK8fIZO7gCrDtMGnUhcugWvJyuSQ64EIote24t1MbtbERUFldR-1k0ndfDHq5EPgAYxx/s320/blogger-image--24799051.jpg" width="320" /></a><span class="st"><br />
</span><span class="st">Over the course of the week there was a lot more discussion between myself and the KKI neurology team about Simon's EEG. Finally, he was diagnosed with ESES -- Electrical Status Epilepticus of Sleep. People who have this condition experience many, many sub clinical seizures (a sub clinical seizure is a seizure in which the brain activity is epileptic but there are no outward visible signs of seizure). Sometimes they have them while awake, but they mostly occur while sleeping. Over time, the constant seizure activity can erode a person's cognitive and physical abilities. It can cause language and communication delays (and therefore is sometimes mistaken for autism) and behavioral changes. It can even cause psychosis. </span><br />
<br />
<span class="st">We learned that for over 85% of Simon's non-REM sleep he is having seizures, and that he also experiences them while awake. We also learned that this condition is very, very rare. So rare that there isn't a statistical prognosis or a set course of known effective action. So rare that no matter how many times I google it I only come up with the same handful of articles (which mostly state how rare the condition is). So rare that most doctors have never dealt with it and there is only one person with enough understanding and experience in it to be considered an expert. </span><br />
<span class="st"><br />
</span><span class="st">Fortunately, that expert is no further away than NYU, and doubly fortunate he seems to be a very nice and knowledgeable physician who doesn't mind answering a very worried mom's millions of questions for nearly an hour this morning. His name is Dr. James Riviello and we have an appointment with him on Thursday of this week. </span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCYaMIRs6N-2v6w-3U5GwjYif5_viU972bBe8QJzyl2rFtYD4OKQthTftCVXegFTXkFEKW9S1_Hg1Kk8heE6xNFH8FjmvMzcx0vuKjmr0-IhBh01t_yk3T6JKKsqYGiyA1rIHO4qJOnoav/s640/blogger-image--1726722288.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCYaMIRs6N-2v6w-3U5GwjYif5_viU972bBe8QJzyl2rFtYD4OKQthTftCVXegFTXkFEKW9S1_Hg1Kk8heE6xNFH8FjmvMzcx0vuKjmr0-IhBh01t_yk3T6JKKsqYGiyA1rIHO4qJOnoav/s320/blogger-image--1726722288.jpg" width="320" /></a><span class="st"><br />
</span><span class="st">So, we are headed to NY in a couple of days and I am picking the blog back up. I know that somewhere out there there is another worried mother whose baby has just been diagnosed with a rare disease... maybe even ESES. For her, and for the many people that love us and hold us in the light, I'm writing again. Pray for miracles -- we need them.</span><br />
<span class="st"><br />
</span>Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com2tag:blogger.com,1999:blog-5137100849150244300.post-52122109584834995992012-08-14T20:17:00.001-04:002012-08-14T20:37:46.467-04:00A Tale of Two Doctors<i>"The children that do best are the ones whose parents are the most involved."</i><br />
<br />
This seems like common sense, I know, but nonetheless I needed to hear it. Brian and I were sitting in a conference our "regular" neurologist had called in response to an email I had sent her following our slightly disastrous first appointment with an epileptologist (a neurologist that specializes in epilepsy).<br />
<br />
We'd been referred to the epileptologist following Simon's most recent status seizure. The consensus of the many medical professionals following Simon has been to advise us to seek more aggressive treatment of Simon's seizures, which have not yet been controlled through medication(s). I imagine that, were they all "normal" (i.e. short) seizures, we'd be directed to keep on keeping on with medicines alone, however the fact that Simon has had 4 status episodes (each carrying significant risk for brain damage, or worse) in increasingly rapid succession is a serious cause for concern. We might not always be as lucky as we have been, and it is time to start taking more intense (or drastic, it depends on your opinion...) measures. Currently up for discussion have been brain surgery to remove the area of activity, the ketogenic diet, more medicines, and/or a VNS implant (the latter 2 options are what I am most interested in presently).<br />
<br />
So, enter the epileptologist. The über specialist we need to consult in order to determine viability of options, create next steps, and ultimately set a course of action. Unfortunately, it turns out that there aren't that many pediatric epileptologists around, and of the three that work with Simon's neurosurgeon two are not taking patients and the third had a six-month waiting list for new patients. Fortunately, a waiting list is no match for this mom. Knowing how many times we have been in the hospital for seizures over the past several months, I was pretty certain we had seen every neurologist during "rounds" at some point or other. If this doctor had already seen Simon, we weren't a new patient, and therefore we could have the next available appointment. Sure enough, it turned out that this doctor was the guy we saw during our very first stay in the PICU. He had notes on Simon, we were already "in the system," and so we got an appointment to be seen within the week. (Go me.)<br />
<br />
But... uh oh. <i>He's the guy we saw the first time.</i> <i></i>The big shot epileptologist we needed to see was the same guy that wouldn't take five minutes to talk with us, answer questions, or give us any solid info at all (unless you count him condescending to tell me the medicine he prescribed tasted like cherries, like that was my biggest concern. Personally, I don't count that). This was same guy that walked away from me when I asked him questions while standing over my four year old son's comatose body in the pediatric intensive care unit. This was the guy I had to rely on to help us.<br />
<br />
Well, crap.<br />
<br />
When I wrote to our neuro to tell her I had made the appointment I also (as tactfully as I could) mentioned that I was concerned about the demeanor of the doctor we were being sent to based on prior experience. I asked for her guidance and she advised me to go in with an open mind, and remember that I am a much more educated mom now that I was 2 years ago. She also said that she would email the doctor in advance to discuss both Simon's history and to let him know that Simon's parents are very involved and educated.<br />
<br />
If only that had worked.<br />
<br />
I can honestly say that in over six years of dealing with many "créme de la créme" of the medical profession, Brian and I have never <i>ever</i> been treated the way we were during this appointment. I won't go into the gory details, but after 15 minutes of talking <i>at</i> us, ignoring Simon (but petting Tigger), suggesting that we "scoop out" part of Simon's brain, repeatedly contradicting himself and other doctors we have consulted, completely dismissing our concerns, and behaving more than a little like a bully when I told him we aren't currently interest in allowing Simon to participate in his research project... he looked at the time and then walked out on our appointment while I was in the middle of asking him a question.<br />
<br />
I considered following him. <i>Making</i> him answer my questions fully, <i>making</i> him recognize that he can't dismiss this parent so easily. I've done it before. But those were different circumstances -- I was following the doctor not because he hadn't answered me, but because I hadn't understood fully, or had realized after he left that I needed more information.<br />
<br />
This was different. This time, I realized that I didn't want this doctor's help, and he wasn't good enough for me to try to teach a lesson to. If he couldn't deign to answer my questions, if he contradicted myriad other professionals with merely a shrug, and if he thought that it was <i>ever</i> okay to bully a parent into participating in his research before giving them assistance in other areas -- it was clear that he was not a person to be trusted, much less a doctor to entrust with the care of our precious son.<br />
<br />
I knew this. My gut screamed it. I acted on it, but I also doubted myself. Maybe he was that brilliant that he was entitled to bad behavior? Maybe he was Simon's best hope and what if I was letting my pride get in the way? He couldn't be all bad if he had other patients and so much power in a "world-class" hospital?<br />
<br />
What if I was trying too hard, pushing too much, over-educating myself in areas where I had no business having opinions and was therefore endangering my son.<br />
<br />
Talk about walking around with the world on your shoulders!<br />
<br />
Fortunately, our neurologist does not treat me like an imbicile. Fortunately, she takes the time to listen to her patients, answer questions, and field the frantic emails of worried moms late at night.<br />
<br />
When we finally met with her, she didn't seem terribly surprised by the account of our experience with the epileptologist. She understood where we were coming from in wanting to work with someone we could trust, and she offered to contact her colleagues from another very well-respected hospital to get us in for a second opinion (we took her up on this).<br />
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What I am most personally grateful for, was that she took the time to let me know that I am on the right track. I often wonder about how other parents in situations like ours cope. I pay attention to snippets of other's experience from the social media groups and email list serves I belong to. Sometimes I find parents like us -- who take it upon themselves to spend sleepless nights learning about their childrens' condition and searching for ways to keep them safe and improve their quality of life. Other times, I see parents who step aside and put all their faith in external sources. Most often it is something in-between. Sometimes I don't know what approach is better. Like everyone, I simply do what I believe is right. I do what I have to do.<br />
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I know that resources, education, culture and personality all play a part in determining how people react in extreme circumstances, and parenting a medically complex kid like ours is definitely an extreme circumstance. I try not to judge others, just help, and provide support where I can. But, sometimes, I need know that I am not only doing what I think is best, I need to know that am doing the right thing. <br />
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<i>"The children that do best are the ones whose parents are the most involved." </i><br />
Even a super mom needs a gold star once in a while.<br />
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<br />Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com2tag:blogger.com,1999:blog-5137100849150244300.post-27098171629587034752012-07-31T21:56:00.002-04:002012-08-01T08:16:31.060-04:00Pupdate<div class="separator" style="clear: both; text-align: center;">
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Tigger has been with us just a little over two months now -- which is hard to believe since his larger than life presence (I mean that literally -- he is 70 pounds and growing!) is already a fixture in our home. We've fallen in love with him and I know he loves us back. <br />
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Tigger is the friendliest, most affectionate dog I've ever encountered -- in fact, I think his love of people, especially children and the elderly, is going to be one of his biggest challenges as a serious service dog. He often gets distracted by his love of love, and can forget what he is supposed to be doing (it took me an extra half hour to pick up a prescription from Target this week because of all the old folks Tigger had to love on -- though this is my fault, too. He is so sweet that I don't have the heart to stop him!).<br />
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Tigger is also very smart. Smart enough to learn and follow many commands; and smart enough to decide when he<i> doesn't</i> want to follow them. Like a little kid, he tests his boundaries to see what he can get away with; eating Simon's leftovers and the cats' food, stealing toys, and barking at strangers passing by the house (I'm pretty sure he just wants them to stop and say "hi") are his most frequent infractions. Over the past several weeks Tigger has figured out that I don't like to yell, Olivia is a big mush for his fuzzy face, Brian is the "alpha" but has a soft spot for happy puppy antics, and Simon is... well, Tigger still seems to mostly see Simon as the "other puppy." <br />
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It hasn't been love at first sight for Simon and Tigger, which has been hard for me to admit even to myself. Along with everyone else, I wanted the "Hollywood ending" to our boy-meets-dog story; particularly after the incredible outpouring of support given to bring the two of them together. A part of me knew that it couldn't be like that; because it has <i>always</i> taken plenty of time for Simon to adjust to <i>anything</i> different, and this dog is whole lotta different. I knew this, but it wasn't what I wanted, and I worried about their relationship. A bond with a service animal is something that can bring stability and safety to Simon's life on a long-term basis, which (like any parent) I desperately want for him.<br />
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So, being me, I had to do something (I'm really not a wait-and-see person. I'm not sure if this is a fault or a blessing?). Though I know that some things can't be forced, I also know that most things can be helped along if approached in the right way, so I did some research (you're shocked, I know) and then I looked for some help.<br />
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Since the autism seems to me to be the biggest challenge in this (or any!) relationship, I started out by researching autism and service dogs, more specifically service dogs <i>for</i> people with autism. I wanted to know what those relationships are typically like (if there is such a thing as "typical" when it comes to autism), and I wanted to know what a service dog can do for a person with autism. We know what Tigger can do to help us with Simon's seizures, but it occurred to me that maybe there are other things Tigger can do for us when it comes to his cognitive and communication disabilities.<br />
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I found out that the autism service dog relationship (it is worth it to mention that most of what I found had to do with children and autism, not so much about adults...no idea why) generally starts as a 3-way, not a 2-way relationship. The dog, the child in need, and the caregiver(s). The dog knows that the child is not the alpha, so a broader relationship is needed with the child taking on as much care for the dog as they are able. Over time some children are able to care independently for the dog and establish a 1:1 relationship but like all things with autism and disabilities, this varies depending on the individual. <br />
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In regard to a dog's autism-related service function, I found a ton of information on their therapeutic benefits both at home and even in the classroom (there are even reading programs that use the dogs in schools!) -- but this is mainly what I was expecting. Judgement-free companionship, developing empathy through caring for an animal, and establishing a bond through both nonverbal communication and verbal commands are all great for kids on the spectrum; we've already seen this with Simon. But... these are benefits that could be obtained through use of any well-trained and kid-friendly pet. They are not by definition a service animal's role.<br />
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What I wasn't expecting to find is that service dogs for autism have a very conventional service-dog role (even more conventional than a seizure dog!). An autistic person's safety and functionality are compromised because their perception of the world is impaired. Traditionally, a service dog is trained to pay attention to what their human cannot, and then assist that person accordingly. It is generalizing a bit, but essentially this concept isn't any different from the way a blind or deaf person uses a service animal -- something most of us are pretty familiar with. <br />
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I honestly don't know why I had thought that they would do something more avant-garde. In retrospect it makes complete sense, and I even wonder why more people aren't using service dogs for autism currently -- though interest in it does seem to be on the rise. <br />
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After all the research, my next step was to determine what to do with all the info. To figure that out, I knew I would need help. Training both Tigger <i>and</i> Simon for multiple purposes is going to be quite an undertaking.<br />
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First, I spoke with Tigger's trainers from Noelle's Dogs Four Hope about what had been going on with Simon and my thoughts on how Tigger can help us, not just with the seizures but with the autism as well. Much to their credit, they are not only willing to help us train Tigger for both purposes, but they have been excited by the opportunities it presents and have been actively doing their own research and communicating with us about what we can do moving forward. (They are truly awesome people!)<br />
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Next, I made an appointment with a behavioral psychologist. We'd been offered this service ever since Simon was diagnosed with autism, but I'd put it off thinking that it was really only meant for parents that had "lost control" of their particular situation. This is another great example of "Laura being wrong" (how many are we up to on this blog?). The more I thought about it, the more things I realized I needed help with. Not because Simon is out of control, but because I want to find as many ways as I can to help Simon be as successful as possible. We are in many ways blessed, but we also have a lot of challenges; Simon's relationship with Tigger is just one (safety awareness, attention difficulties, and coping with stress are a few more..). Last week we met with our therapist for the first time and I think it was a very positive step. He thinks we can address all of the issues we brought up, and we made some great goals. Best of all, he thinks that Tigger's presence in Simon's life is a GREAT thing. He confirmed that developing a 1-1 Tigger-Simon relationship will take time (a lot) and work (a lot) but the benefits for Simon have the potential to be huge. (He also didn't seem think that I am crazy, which is a nice bonus.)<br />
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So, we have a lot to work on, but I can say that already we have made a lot of progress -- Tigger knows that Simon is the one
that feeds him, he will sit for Simon on command, will walk nicely
beside Simon when he practices holding the leash, and he only steals
Simon's goldfish crackers when he is pretty sure Simon isn't looking.
Simon also recognizes that Tigger is his dog. He will answer questions
about Tigger, he seems to enjoy the process of feeding Tigger, and he
likes to give him commands and treats. He doesn't even mind when Tigger
plays with his toys (Tigger loves any ball or stuffed animal). Simon also
continues to talk to Tigger a lot, mostly using complete sentences,
which is pretty amazing. <br />
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We may not have had our love-at-first-sight Hollywood beginning, but the drama is well underway, and I do believe that we will have our happy ending. The boy and dog will live happily ever after, but it may take quite a storied arc to get us to that conclusion.<br />
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Stay tuned! <br />
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<br />Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com0tag:blogger.com,1999:blog-5137100849150244300.post-67236132319810789402012-07-23T20:19:00.001-04:002012-07-23T23:34:32.093-04:00Be OKI'm going to tell you a secret: today, I have not been okay. Simon is back to normal, and all's well that ends well, except I'm not... yet. I do know that I will be -- I've been through this routine -- this low in the wake of an adrenaline-pumping-life-threatening-emergency -- enough times to have it feel routine, but it still catches me a little off-guard.<br />
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Each time, I try to convince myself that I've toughened to the level that I will no longer be so affected. I tell myself that I can handle everything and anything and keep on keepin' on... but... It always ends the same. I am tough as nails as long as I need to be, but as soon as I know that everything is alright I start to crumble. I've been on the verge of tears all day, I haven't been able to focus on my work, and (though I have slept since the weekend's marathon) I am bone-weary tired. I remember once reading that the stress levels of special needs parents can resemble those of combat soldiers. On days like today, I believe it.<br />
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So, what's a good soldier to do? Fortunately, I know this routine, too. Just as I have a plan to cope with Simon's crisis, I have a plan for my mini breakdown post crisis. (I'm a little type A, deal with it.) I'm sharing my outline below just in case you are ever in need of a pick-yourself-up-by-your-really-cute-shoes survival guide. Introducing:<br />
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<b>Laura's 5 step program to coping with the post-post-crisis-crisis:</b><br />
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1. Buy a new pair of really cute shoes. This is extra effective if you have a coupon to DSW. Sadly, this time DSW had nothing I liked, so I cashed in my Bed Bath and Beyond Coupons (the shops are next to each other, it was kismet) to get myself a robot vacuum. I've only had it for a day and I love this thing. Not only did it serve as my stress-purchase BUT it cleans my house, too! All by itself! While I watch sipping a glass of my favorite vino! Which brings me to step 2...<br />
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2. Have a beverage of choice (or two). Not enough to cause a headache tomorrow, just enough to loosen that clenched jaw and the knot between your shoulder blades. <br />
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3. Now that your jaw is unclenched you're ready for a good cry. This is best done in the shower. I swear the shower is the very best place in the world for a good cry. Just stand there in the steam and the stream of hot water and let it go. Magically, you emerge a much calmer and more rational individual.<br />
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4. Hug your family and remember you ARE all okay. Pet the dog. Get into a tickle fight. It isn't possible to be sad with all this cuteness around you.<br />
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5. Know in your heart that you got through it, again. Know that if you did it once.. twice.. (four times, who's counting...?), you can do it again. 'Cause it will happen again, and maybe <i>next time</i> you'll be able to just keep on keepin' on. Be as tough as you know you need to be. <br />
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And if not, I've got a list.<br />
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<br />Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com0tag:blogger.com,1999:blog-5137100849150244300.post-69960849248133227352012-07-22T21:12:00.000-04:002012-07-23T23:35:11.380-04:00Status Update<div class="separator" style="clear: both; text-align: center;">
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Friday night, after a pleasant family trip to the mall (incuding Tigger), I had a strange urge to check the <a href="http://constraintinduced.blogspot.com/2012/01/girl-scout-badges-2365.html" target="_blank">emergency bag I'd packed months ago for impromtu trips to the hospital</a>. I don't know why, I just felt the need to make sure all was as it should be, just in case. <i>iPhone chargers, ear phones, instant coffee, yoga pants and top, socks, Simon's yellow blankie (we have multiples), toothpaste and toothbrush for me and Simon, hairbrush and tie, tissues, notepad, pen.</i> It was all there, but I did decide to add a few pull-ups for Simon since they never have them at the hospital. I zipped the bag and went to bed.</div>
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It has been a pleasantly busy summer so far. I've had lots of great projects to work on, the kids have thoroughly enjoyed their new babysitter and their inclusion summer camp, and we took a lovely trip to the beach just a few weeks ago. Most especially, this has been the summer of Tigger. Right away we came to love having him in our family. Getting to know him, getting he and Simon to bond, maintaining his training, and just adjusting to life as dog owners has been a big focus of our day-to-day over the past several weeks. (I promise a more in-depth Tigger post later this week).</div>
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Things had been going along smoothly until Friday night. About an hour after going to sleep I heard Brian calling for me from Simon's room and I immediately knew what was wrong. Brian had seen Simon suddenly sit up in bed on the video monitor (Brian is a night owl) and, when he went in to check on him he found that Simon had vomited and was in the beginning stages of a seizure. </div>
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We waited the required five minutes, but the seizure did not stop on its own. We gave a new emergency med (nasal diastat), which slowed but did not stop the seizure, and then called an ambulance.</div>
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While waiting for the paramedics, Simon lay on the floor seizing with Brian and Tigger by his side (I ran out to drop Olivia off at a neighbors house and flag down the ambulance). Tigger sniffed Simon all over and stayed close, but as he is not yet specialty trained, he didn't know what to do. Since this was Tigger's first experience with a big seizure I have to assume that it was simply a good introductory learning experience. Sadly, the only way Tigger will get to know and recognize Simon's seizures is for Simon to have more seizures. Ugh.</div>
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As usual, the paramedics had to take us to the closest hospital, not our preferred hospital. Usually, this is a disaster, but (I can admit to being pretty pleased with myself) through really awesome preparation that I intend to make even more awesome, I was able to make it a successful trip. After our last status episode, which was quickly and successfully treated at Hopkins, I requested a list of the drugs and dosages that they used. I wanted to have a record of what they did since they were able to stop the seizure without causing a coma (not being in a coma is a really good thing). I took a photo of that list (signed by our neuro for authenticity's sake) and keep a copy in my phone so I ALWAYS have it with me. I was able to show the list to the ER doctor and insist we follow it to the letter.</div>
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I did have a bit of a squabble with the doc about this. Apparently, the meds we used aren't typical protocol for a status seizure (a medically induced phenobarbital coma is actually the protocol), and the med that I really wanted was not immediately available. I was polite, but I had to be quite firm and more than a little pushy (I believe I asked the doc how many status seizures she had seen and then pointed out that I was a lot more experienced in this particular area...). Nonetheless, it still took a half hour to simply get the medicine we needed for Simon from their pharmacy to the ER. But, once we had it and loaded Simon with it -- the seizure stopped. Two and half hours after it started.</div>
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Despite the fact that we'd stopped the seizure, the hospital still transferred us to Hopkins (they seriously can't wait to get rid of us, it is almost comical). During the ambulance ride to the second hospital I mentally braced myself for Simon's usual (warranted) terrified post-ictal state, when he'd wake in a few hours to find himself in the hospital attached to so many wires and tubes and machines. Compounded by the misery of being stuck there for at least the next 24 hours. </div>
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Simon started to wake up (and freak out) almost as soon as we were in the ER at Hopkins. After we got him settled and he finally fell back to sleep, the doctor pulled me aside into a private room. There, she confessed that she has a 10 year old autistic son. She told me that she understood some of what we were going through personally and she knew that, in my shoes, all she would want would be to take her boy home so he could really rest as soon as possible. "You look like you know what you are doing," she said, "is that what you want, too?" </div>
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My eyes filled with tears and I nodded hard. To avoid a hospital stay would absolutely be best for Simon and I absolutely did know what I was doing. She asked us to stay for another hour so she could watch him, and she made me promise to bring him back at the slightest sign of trouble, but she went ahead and got our discharge ready so we could leave right away. </div>
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As we left, I thanked her profusely and noticed that she, too, had tears in her eyes. "I can't take it away," she said, "for either of us. But if I can make it just a little bit easier, than that is what I am happy to do." </div>
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<tr><td class="tr-caption" style="text-align: center;">Tigger stayed by Simon while we were in the ER... </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGy7x7TkbLjw_o7YU5J24rZ6tKm1xXibbtXD2HTnJhUnWpww5_eTd0Sx6haX78pWoWtdn6z4vW_CpEt3fK-gWcqm643UzKeaALQAiRBXaBGmZgp07MJfAQZPxqjGg8dEWvP_KDHwGWjN3b/s640/blogger-image--1581245262.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGy7x7TkbLjw_o7YU5J24rZ6tKm1xXibbtXD2HTnJhUnWpww5_eTd0Sx6haX78pWoWtdn6z4vW_CpEt3fK-gWcqm643UzKeaALQAiRBXaBGmZgp07MJfAQZPxqjGg8dEWvP_KDHwGWjN3b/s320/blogger-image--1581245262.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">and he held Simon's hand on the way home...</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">and watched over him while he recovered. </td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGy7x7TkbLjw_o7YU5J24rZ6tKm1xXibbtXD2HTnJhUnWpww5_eTd0Sx6haX78pWoWtdn6z4vW_CpEt3fK-gWcqm643UzKeaALQAiRBXaBGmZgp07MJfAQZPxqjGg8dEWvP_KDHwGWjN3b/s640/blogger-image--1581245262.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><br />
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<br /></div>Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com1tag:blogger.com,1999:blog-5137100849150244300.post-83884467783960702002012-06-11T18:42:00.000-04:002012-06-11T19:28:05.510-04:00TiggerFest!!!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAS6s1G8LiT9m8YlwYKlsQ6hA-jsl9tx3k5owCSTMCBefHIRJrVuHlIrd_VNpufKqRb05wkc2lUf3TgE1hj_i0-9kz6IMIllDjPXzC3__1viieHc7pdM-z-ziKasRAJ8FmQMklT0fANwsC/s1600/tiggerlove.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAS6s1G8LiT9m8YlwYKlsQ6hA-jsl9tx3k5owCSTMCBefHIRJrVuHlIrd_VNpufKqRb05wkc2lUf3TgE1hj_i0-9kz6IMIllDjPXzC3__1viieHc7pdM-z-ziKasRAJ8FmQMklT0fANwsC/s320/tiggerlove.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some of the kids showing appreciation for the guest of honor.</td></tr>
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<br />
<br />
The party to recognize all those that helped bring Simon and Tigger together was a HUGE success (and I mean that literally -- there were well over 100 people in attendance!). Thank you to everyone that came out to celebrate with us -- It was a beautiful day and a beautiful reason to throw a party.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVvKexkbX6jbmiJBmnnJTMAQ8y5G9y_5xNaQuxZ7rOJa5XUSQUjRWJ5JCqjihGiKfBYzSu4XAeFheILULjx8N74-AQGGPHQr6FNmS4z3C83RwxV3ykCrSTkl9KW-CRFjm9elYTKmju27WZ/s1600/band_speech.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVvKexkbX6jbmiJBmnnJTMAQ8y5G9y_5xNaQuxZ7rOJa5XUSQUjRWJ5JCqjihGiKfBYzSu4XAeFheILULjx8N74-AQGGPHQr6FNmS4z3C83RwxV3ykCrSTkl9KW-CRFjm9elYTKmju27WZ/s400/band_speech.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me with the awesome band, <a href="https://www.facebook.com/laura.l.hatcher/photos#%21/ConfidenceInVolume" target="_blank">Confidence in Volume!</a></td></tr>
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<br />
<br />
Before our awesome band played, I took a moment to personally thank everyone -- here is (more or less) what I said:<br />
<br />
<i>This party is not about a dog -- albeit it an absolutely adorable super hero dog. It still isn't about the dog.<br /><br />This party is about a little boy who, in his first six years, has encountered challenges that most of us would not be able to survive and still be standing; from a stroke before he was born, to three life-threatening status seizures over the last 18 months, to more diagnosis than I care to think about. And Simon has not just survived -- he has thrived. This has been a year of incredible progress for Simon.This year he had a favorite color, deepened his love of all things pirate, and taught everyone some new songs. He also wrote his name and read his first book. This year, in kindergarten, Simon made his first friends. He had his first play date and he had his first ever birthday party (that he helped plan! Pirate themed...). Most recently, Simon got his first dog and with it his first responsibilities in helping to care for Tigger. <br /><br />Simon has had an incredible year, and we are profoundly grateful. We are grateful for his indomitable spirit and amazing resilience, and we are grateful to the many people that worked with him, cared for him, befriended him, and let him into their hearts to love him.<br /><br />Which brings me to what this party is really, REALLY about -- the reason it was so important to our family to get everyone together that has so positively impacted us this year -- this party is about YOU. Our family, our friends, our community. <br /><br />One of my many faults is not knowing when, or being able, to ask for help. The people that love me know this and, as soon as we started to talk about a seizure dog and said the word "deposit" my parents and the rest of our family were there (as they have always been), this time literally with cash in hand and not taking "no" for an answer. I am grateful that they did.</i><br />
<br />
<i></i><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEb0Qw5Ab9JPG2nwvhhwb4IbYmDIzsl5XpX43LNei6ZqdjoK14JIj7zzlUZpCNqWE5mRVBnxeGil9R24PTpOiMkODbwrVQ-Gcc76mASJgl5SjfVU8VPtpZaN-Z3ncv2_D-e7T-OmstnniW/s1600/momanddad" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEb0Qw5Ab9JPG2nwvhhwb4IbYmDIzsl5XpX43LNei6ZqdjoK14JIj7zzlUZpCNqWE5mRVBnxeGil9R24PTpOiMkODbwrVQ-Gcc76mASJgl5SjfVU8VPtpZaN-Z3ncv2_D-e7T-OmstnniW/s320/momanddad" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mom and Dad chasing the kids!</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<i>Our friends, also knowing how hard-headed I am, went right ahead and called <a href="http://www.noellesdogsfourhope.com/" target="_blank">Noelle's Dogs for Hope</a> to find out what they could do to help us get Tigger. They shared our story with their own friends, and their families, and without me ever knowing about it, they collected funds to cover Tigger's travel from Colorado as well as a significant portion of the cost. And then we went out for dinner one night and they waited for me to finish a glass (or two) of wine before they told me what they had done. Four months later, I am still speechless.</i><br />
<br />
<i></i><br />
<i></i><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoa6HwCM2wt9yII8VJEo5cR3kEkKRlEUop4GR4T197uuN2-dKDdjk6dtbMzUjnq1cVvluM8Y1AlCdzWX_MAlTHLLH2YIIjv1HWODhT1nGl9sH1EvG9kjwXDqPA5GJQ-XIQJIvG84_weE1S/s1600/friends" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoa6HwCM2wt9yII8VJEo5cR3kEkKRlEUop4GR4T197uuN2-dKDdjk6dtbMzUjnq1cVvluM8Y1AlCdzWX_MAlTHLLH2YIIjv1HWODhT1nGl9sH1EvG9kjwXDqPA5GJQ-XIQJIvG84_weE1S/s320/friends" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I am unspeakably lucky in my friends!</td></tr>
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<i><br /><br />Simon's school, Lutherville Lab, not only took amazing care of Simon this year, but have completely embraced our entire family and been right beside us in looking for solutions to make sure that we do everything we can to keep Simon safe. I honestly don't know of another school that would say to a parent (without knowing what sort of legal challenges bringing a service dog into their school would present) -- "Whatever we have to do, we will do it. We are here with you." </i><br />
<i></i><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7ZX3tVXnDOtbCtQXxZ-ZC6ZyWim2RfA9xYCElOiknGDotnPbGOEbdPo4am26P2wIOHAXLgXaU_Avh9hw7Cgc7M0MaLouFYiEDLE8OH7xARg5v8OMlDAEeDPqVpFDovhYopSUI9IjK7LVk/s1600/school2" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7ZX3tVXnDOtbCtQXxZ-ZC6ZyWim2RfA9xYCElOiknGDotnPbGOEbdPo4am26P2wIOHAXLgXaU_Avh9hw7Cgc7M0MaLouFYiEDLE8OH7xARg5v8OMlDAEeDPqVpFDovhYopSUI9IjK7LVk/s320/school2" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some of the great ladies from Lutherville Lab</td></tr>
</tbody></table>
<i>Most of all -- the kids. We spend a lot of time talking and worrying about bullies; especially we parents of special needs kids who worry about our children being particularly vulnerable. But the kids that are here today have proven that they are capable of more kindness, acceptance, generosity, and true friendship than we could ever have imagined. </i><br />
<br />
<i>At his own birthday party, <a href="http://constraintinduced.blogspot.com/2012/04/dear-jaidon.html" target="_blank">Jaidon</a>
asked not for gifts for himself but for his friends to give him gift
cards to Petsmart and Petco so that he could give them to Simon to help
buy what Tigger would need when he came home with us (Tigger says thank
you for the toys!).</i><br />
<i> </i><i> </i><br />
<i></i><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJrOoJJyxdbqE5INBr6SOBRIRUcNAe-eRhadiVc5Lls0Xs7A4gfvkgoQEiH6ujC9KoNjdf5_0Lf-A6iYVpYy7aXXZdmRwjafuIv_E15zvYrB1puelRBnlLVP84LVVYI8Q7qIH2Zpd_ngYU/s1600/576656_10150816426568404_771925432_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJrOoJJyxdbqE5INBr6SOBRIRUcNAe-eRhadiVc5Lls0Xs7A4gfvkgoQEiH6ujC9KoNjdf5_0Lf-A6iYVpYy7aXXZdmRwjafuIv_E15zvYrB1puelRBnlLVP84LVVYI8Q7qIH2Zpd_ngYU/s320/576656_10150816426568404_771925432_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Simon with some of the great stuff for Tigger we were able to get with Jaidon's gift cards!</td></tr>
</tbody></table>
<i>Ridgely Middle found out about Simon and Tigger through Kayla, whose
mom is Simon's kindergarten teacher. They used their annual Arts in
Action night to raise awareness about epilepsy and seizure dogs, and
raised funds for Tigger through the auction of some pretty amazing pop
art sculptures. </i><i><br /></i><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-UpU202fScoU_tU1i480NHn8jCGUGBmQ4NtRc5L53sP7nRsWKYDU7-OtcpPamEhadsGtmnv7w9pDUXiTpHU257bs2LDiuEFP4LRWRpTqI1cVmTmnXH7ZXfZumgLjzhYdCkrCVitoL1o5t/s1600/blogger-image-1260246871.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-UpU202fScoU_tU1i480NHn8jCGUGBmQ4NtRc5L53sP7nRsWKYDU7-OtcpPamEhadsGtmnv7w9pDUXiTpHU257bs2LDiuEFP4LRWRpTqI1cVmTmnXH7ZXfZumgLjzhYdCkrCVitoL1o5t/s320/blogger-image-1260246871.jpg" width="320" /></a></div>
<i><br /><br />"Club Friends" created by a group of students at Lutherville Lab to be a club for kids both with and without special needs to celebrate friendship and share their kindred spirit with the community through good works; waged a "Cents for Simon" campaign that raised impressive funds, awareness, and an amazing affection for Simon throughout their school and beyond (we have heard fifth graders describe Simon as the most popular kid in the school -- I have a feeling that Tigger is going to totally lock that in for next year, too!).</i><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUK4JcvOFF4gQvMaqPH_Dq24o03-9lgD5MPSVH8l83hgVTHPNdO5A02bRWltkzGh6LKgbhl5856WetDfvSlQKCsZ_W3IYuuGBIwen46F9m8eklRh1zoG6AVp6zojivHxPJ7Gk6MV-fIJ_U/s1600/school" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUK4JcvOFF4gQvMaqPH_Dq24o03-9lgD5MPSVH8l83hgVTHPNdO5A02bRWltkzGh6LKgbhl5856WetDfvSlQKCsZ_W3IYuuGBIwen46F9m8eklRh1zoG6AVp6zojivHxPJ7Gk6MV-fIJ_U/s320/school" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Simon at school with his teacher, friends, and Tigger!</td></tr>
</tbody></table>
<br />
<i>Finally, Simon's kindergarten friends this year, and his teacher and aide Mrs. McGee and Mrs. Natterman. These were the most enthusiastic supporters of the "Cents for Simon" campaign; canvassing their friends and relatives for support, creating lemonade stands and wearing their "Help Simon get a Seizure dog" pins with pride. This year -- seeing how Simon is not only accepted by these awesome kids, but cared for, helped, and genuinely loved by his classmates, has been the most profound gift this mom could have ever received. <br /><br />People typically throw parties like this to celebrate milestones in their life -- to recognize an important place they have reached and to celebrate with the people that have helped them get there. This year, we have gone from feeling frightened for our son's well-being, to being embraced and uplifted by our family, friends, community, even people we don't know -- together, we have experienced a true miracle, and I can't thank you enough for being a part of it. I will carry this in my heart always and I know that years from now, when Simon is encountering more challenges as we all inevitably do, I will have the story of what happened here to remind him of how loved he is, how great people can be, and how miracles really can happen.</i><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizkLHxxSbusFeSf_xb0KftG7S2ciM9-aH1gyIbtoXtm4_7nlujSizKSwNab5RZsJYyTrAtobj8tLLWOvVyY8VDx2apZ1-D3RQrzYj_aWTdHs7z1ts1G8ITz1mHn2l3ufZxfS3uJrN1yo5t/s1600/icecreamtruck" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizkLHxxSbusFeSf_xb0KftG7S2ciM9-aH1gyIbtoXtm4_7nlujSizKSwNab5RZsJYyTrAtobj8tLLWOvVyY8VDx2apZ1-D3RQrzYj_aWTdHs7z1ts1G8ITz1mHn2l3ufZxfS3uJrN1yo5t/s400/icecreamtruck" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our awesome school-bus-driver-ice-cream-man made a special appearance with his truck for the occasion. He was just as popular as Tigger!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja0TpOgDaLsO2yujKEYEDkolklnHo2yJdonIiiEILAa7xQF7n183Sch7wAlCWB-6LpnucOkLrt4oO95Y_Rx05Ur737hntTtSybQZFs6iCgBuvemMuWQcurQhTlt-xEO-8rWoYHQTviXcAv/s1600/182704_10150960899584292_1235892124_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja0TpOgDaLsO2yujKEYEDkolklnHo2yJdonIiiEILAa7xQF7n183Sch7wAlCWB-6LpnucOkLrt4oO95Y_Rx05Ur737hntTtSybQZFs6iCgBuvemMuWQcurQhTlt-xEO-8rWoYHQTviXcAv/s400/182704_10150960899584292_1235892124_n.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Beanie Baby Service Pups in Training for everyone to take home!</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF-meE31GQGSJbVcRCCaTjDc3TggGevds8QZ139o1WklpZFrXPza1F9m1FVIY1q-CF-X5XLHS6Gfgre8fgi-PhPw1RaK7RtI9FdJmig45P2Nat_ex_w3tzLuNjFtFolCmhrQFr39gR1T_N/s1600/sleepysimon.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF-meE31GQGSJbVcRCCaTjDc3TggGevds8QZ139o1WklpZFrXPza1F9m1FVIY1q-CF-X5XLHS6Gfgre8fgi-PhPw1RaK7RtI9FdJmig45P2Nat_ex_w3tzLuNjFtFolCmhrQFr39gR1T_N/s400/sleepysimon.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Simon had so much fun he required a two-hour post party nap.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHO0g3szOuhMXzNh-ie3gc1h9Em-_AHFuJRNaSK0xOvRHv9OuFA6feaxWUBiHbCEJcvmy8MC4Bbrnj4erc5WjQTpMJrDGGSdqDDXLsXjbFMTQ4MJ9Bbo6gT-Of5j2MV3rZBMLgba9ReZQg/s1600/550540_10150960902594292_1377735751_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHO0g3szOuhMXzNh-ie3gc1h9Em-_AHFuJRNaSK0xOvRHv9OuFA6feaxWUBiHbCEJcvmy8MC4Bbrnj4erc5WjQTpMJrDGGSdqDDXLsXjbFMTQ4MJ9Bbo6gT-Of5j2MV3rZBMLgba9ReZQg/s400/550540_10150960902594292_1377735751_n.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This about sums it up. :-)</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMJNhBVIubeJqrKVhhxku_Bp2iVAbrDROzKktrnHVJYkL5097uil2Fjm8ISguKXUeRoGHMW-wuOy_SeCBbf9LpAbAZOyJ9BAWhLrMI1hxIGQyjlTA8YPI-aqEyxa9U9WZImeF0SlRzXzgg/s1600/sleepysimon.jpg" style="margin-left: 1em; margin-right: 1em;"><br /></a>Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com2tag:blogger.com,1999:blog-5137100849150244300.post-69887525470129396812012-06-01T15:07:00.000-04:002012-06-01T15:57:53.035-04:00Tigger goes to schoolToday was a big day -- Simon and I took Tigger to school for the very first time! Our intention is for Tigger to start accompanying Simon to school every day in the next school year, but we really wanted to introduce Tigger to all of the students at Lutherville Lab as soon as possible -- because of they amazing way they have embraced Simon and all the fundraising through the Club Friends "Cents for Simon" campaign, I feel that Tigger belongs to them too. <br />
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I was a little nervous -- we were meeting some very important people in Simon's life and Tigger has been in an "adjustment" period of sorts with us --I wasn't totally confident he would be able to maintain his best service dog manners with SO many children and SO much excitement. Plus, we had a field trip to attend -- the kindergarten and first grade students were visiting a nursing home to sing songs and spread cheer. SUPER exciting!<br />
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I need not have worried. I am absolutely in awe of how well this puppy handled himself today. He listened to commands, was completely calm and professional the entire time (even when he saw squirrels!), and could not have been a sweeter more charming ambassador for service animals everywhere. So much awesomeness! Here's some pics!<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFHfxY7rXUTEVKNh4qsJWufb0g5QWpYdExfG4XRH0_iNfa8l8Z2sjbbqXN2S95YLhYmbmSvbWcMHjptsMuu2badZTojvAh43CqNwpx3D_J3FkMVRI_Jt6CfJmarbM8quYW3Qt9mA68KyXU/s1600/blogger-image--1302498870.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFHfxY7rXUTEVKNh4qsJWufb0g5QWpYdExfG4XRH0_iNfa8l8Z2sjbbqXN2S95YLhYmbmSvbWcMHjptsMuu2badZTojvAh43CqNwpx3D_J3FkMVRI_Jt6CfJmarbM8quYW3Qt9mA68KyXU/s320/blogger-image--1302498870.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We started our day in the school's television studio. Tigger, Simon and I were on the morning announcements! We introduced Tigger to the school and (at the teacher's request) I explained a little about how to treat a service dog when you meet him in the hallway of your school. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6jBjrkpheR5dw6qMLhwsQcfaAeiqzH0uwoJ5EaZvShwJNd-mpoUtbVVaXv74Ec9EdYr9wOPJZDHSbIKiB-e8MApMnIaPfXR05S8tJL-Ev6cDwQWLguEmpp4_wjRhn63WZf3xjEp4CUBjY/s1600/blogger-image-1206648388.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6jBjrkpheR5dw6qMLhwsQcfaAeiqzH0uwoJ5EaZvShwJNd-mpoUtbVVaXv74Ec9EdYr9wOPJZDHSbIKiB-e8MApMnIaPfXR05S8tJL-Ev6cDwQWLguEmpp4_wjRhn63WZf3xjEp4CUBjY/s320/blogger-image-1206648388.jpg" width="320" /><span id="goog_180577536"></span><span id="goog_180577537"></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ready for his close up.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimWl_TMFbPv6PD-oa-M4AK9XtyCLFWhhJL32f9j2TmNjKxz6udPkBFZAFnTd5n4xb8HQhVq-k-ir0AX-tlzbqFby8kNug6ddFZkASmSTV2wT7dJj2igVzLG9LfgCvP2wFAXQGkjXcEEGHg/s1600/blogger-image-61160262.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimWl_TMFbPv6PD-oa-M4AK9XtyCLFWhhJL32f9j2TmNjKxz6udPkBFZAFnTd5n4xb8HQhVq-k-ir0AX-tlzbqFby8kNug6ddFZkASmSTV2wT7dJj2igVzLG9LfgCvP2wFAXQGkjXcEEGHg/s320/blogger-image-61160262.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Meeting some of the important ladies in Simon's life -- his special education and inclusion teachers and some of the administrators. It seems that BOTH of my boys are irresistible ladies' men...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicneXPa2ZJfwrf1B5ag5E3xGA9e76SRqvu6T3xDFqE5CT4Ne58Bo3TEh7xl84yU3lKAfGmMXRqVmf-na-VY8kC9vsWNs3FHag3gZFzr-XJZBOPTnPpRhge9WXKagVnI1Tg9BRpqDCLlp0R/s1600/blogger-image--254207256.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicneXPa2ZJfwrf1B5ag5E3xGA9e76SRqvu6T3xDFqE5CT4Ne58Bo3TEh7xl84yU3lKAfGmMXRqVmf-na-VY8kC9vsWNs3FHag3gZFzr-XJZBOPTnPpRhge9WXKagVnI1Tg9BRpqDCLlp0R/s320/blogger-image--254207256.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">On our field trip to a nearby nursing home. Throughout the school year the kindergarten and first grade classes have been sending cards and gifts to the residents as a service project. Finally, the kids visited to perform some songs and meet the residents in person. Tigger and Simon particularly liked "If you are happy and you know it do the disco!"</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN7VOOq47LuEjMnpU7JhJiYFIG0lWnzat51Tm3MusH4PwsxHrkzavtLGiHXAtmP0n1DW2uBwtCADl77K767WDhXvN0-Q3PjhEDG39CE952gX-aUFybXTSOzoKiyFUUU8dN4RZIAofiqlra/s1600/blogger-image--333212422.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN7VOOq47LuEjMnpU7JhJiYFIG0lWnzat51Tm3MusH4PwsxHrkzavtLGiHXAtmP0n1DW2uBwtCADl77K767WDhXvN0-Q3PjhEDG39CE952gX-aUFybXTSOzoKiyFUUU8dN4RZIAofiqlra/s320/blogger-image--333212422.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Freeze Dance! I totally lost Simon in the madness. That boy can freeze dance like a champ.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLYVuw5M2M8ewCymNGf3Ys2nP26Yo83nqSyDmLvPzDlAl7CXM5caQaO8dfOSwzSr5L54tpyqKbL7UiJ2jaKC8Fgoti77vhnogXL5wi7Zr7Jdz_P8b-0QJyB5VvAwSociblEN-uyzZeSpb-/s1600/blogger-image--171043166.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLYVuw5M2M8ewCymNGf3Ys2nP26Yo83nqSyDmLvPzDlAl7CXM5caQaO8dfOSwzSr5L54tpyqKbL7UiJ2jaKC8Fgoti77vhnogXL5wi7Zr7Jdz_P8b-0QJyB5VvAwSociblEN-uyzZeSpb-/s320/blogger-image--171043166.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tigger spread lots of love to the residents. He was incredibly sweet and gentle, and made more than one little old lady tear up. Sniff.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYa18cNf3oCuif-ei0Rvw0YK2NlyeBkxlJMCGmZVkzrGo_irYFDBzI8-enAQOo0YjPgBvyoZiMHUqaIfkEzwV-NUGsLmU8Rw9WJRWJbbHIGJEtGp2icGwDh598RepOU2_Mn8qwsniuV4w5/s1600/blogger-image-1932776151.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYa18cNf3oCuif-ei0Rvw0YK2NlyeBkxlJMCGmZVkzrGo_irYFDBzI8-enAQOo0YjPgBvyoZiMHUqaIfkEzwV-NUGsLmU8Rw9WJRWJbbHIGJEtGp2icGwDh598RepOU2_Mn8qwsniuV4w5/s320/blogger-image-1932776151.jpg" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj84jO9sgdXuP67eR9d7lmjvMMFJd_CtIVSAnSdZQlQ0H3wSN2OgKT4Q9MbURRKTUUvaR4DkohCZ0oq_fpr2BDXYkKzFdlmvr6ZDFrbVG4xjfxqbH8vIC5mgipyCryAob2H3NRmCKClNm8G/s1600/blogger-image-1635772624.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj84jO9sgdXuP67eR9d7lmjvMMFJd_CtIVSAnSdZQlQ0H3wSN2OgKT4Q9MbURRKTUUvaR4DkohCZ0oq_fpr2BDXYkKzFdlmvr6ZDFrbVG4xjfxqbH8vIC5mgipyCryAob2H3NRmCKClNm8G/s320/blogger-image-1635772624.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Back to school! The class had been told that after the field trip they would have a chance to pet Tigger and get to know him a bit better. Here they are lined up ready to each take a turn to pet Tigger. I really don't think Tigger could have been any happier. He was pet by so many sweet kids today (even Simon!) and he loved every minute of it!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQZjScatOey6Ez7-dWnx8-yz8UyIQ0oWl6D7yJzCdb3BO8rucFctoOIOfM8NpEVn7vfaSZUkRpROqGKupw3z6OUaWQOyDU0At4w71kfEOqxhpHoyB4Lr-T5KOZ3qi1vAvSglRBU2vHif7Q/s1600/blogger-image-788290482.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQZjScatOey6Ez7-dWnx8-yz8UyIQ0oWl6D7yJzCdb3BO8rucFctoOIOfM8NpEVn7vfaSZUkRpROqGKupw3z6OUaWQOyDU0At4w71kfEOqxhpHoyB4Lr-T5KOZ3qi1vAvSglRBU2vHif7Q/s320/blogger-image-788290482.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One of Simon's very special friends. Can't you just tell how sweet she is in this photo? I swear Tigger is grinning. </td></tr>
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<br />Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com0tag:blogger.com,1999:blog-5137100849150244300.post-68687227423514162892012-05-31T16:40:00.000-04:002012-05-31T16:40:00.598-04:00My Third (Furry) BabyI'm going to be honest -- before I brought Tigger home, I really did think he was going to behave less like a living being and more like a robot. Give command -- follow command. Perfect obedience, some affectionate behavior at designated intervals, but no real personality or independence to speak of. What can I say? I'm going to attribute my embarrassing ignorance to having little experience with dogs in general, and a complete lack of experience in training or working with a service dog. As stated in an earlier post -- I can be proven wrong (and it is usually a good thing that I am).<br />
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Tigger, as it turns out, has a lot of personality! He is <i>extremely</i> affectionate and friendly -- he loves people, other dogs, and even my two mean old cats (he looks so sad when they hiss at him!). Like a little kid, he loves attention and really can't stand to be alone for even a few moments. New friends to greet, belly rubs, easy cheese, and stuffed animals with squeakers, all make Tigger a very happy puppy. <br />
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In many ways, all this personality is a pleasant surprise. We've really
fallen in love with him and his sweet nature. And I think he truly loves everybody back. Not to mention that, for a 7 month old puppy, he is REMARKABLY well-behaved: you only need
to tell him once to "leave it," he never begs, is generally quite calm, and he is usually very
willing to follow many commands -- all the result of the last 5 months of
intensive puppy and obedience training which I am VERY grateful to our trainers for!<br />
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Simon also continues to react to Tigger in a truly remarkable way -- he treats him like a little
brother. He bosses him around (Tigger! You go that way! You sleep on
your bed! Time to eat!), gives him advice (Tigger! You need to be
patient! You need to be a small dog, you're too big!), and he likes to
help take care of him as much as he is able. Simon likes to hold his
leash, get his food, and give him his toys to play with. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhazkEN6CvtIwOVj9eAJwsV-JcjsFexA3gT-yjopqb9MAD1yiffwi5pUox4H9d8iNiLM8WOz36-MggUbMPmavCr6DqXIg07nNEk8viGjbk6K6its6Z7Ffb5oqIFGWRYtw7crkiYy82HcksQ/s1600/blogger-image--1643634990.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhazkEN6CvtIwOVj9eAJwsV-JcjsFexA3gT-yjopqb9MAD1yiffwi5pUox4H9d8iNiLM8WOz36-MggUbMPmavCr6DqXIg07nNEk8viGjbk6K6its6Z7Ffb5oqIFGWRYtw7crkiYy82HcksQ/s320/blogger-image--1643634990.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Simon really enjoyed showing Tigger all the new toys we had gotten him (so he has something to do OTHER than chew the cords of medical equipment!)</td></tr>
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However, just like the baby he is, Tigger fusses when he can't go where he wants when he wants
to, and he hates being sent to bed. He gets into things because he is
curious, or bored (like chewing up the cord of Simon's pulse oximeter after bedtime a couple nights ago! ack!). He gets excited and tests his boundaries in new situations. He also has opinions about who he wants to listen to and be with -- he LOVES Brian and if Brian is home he follows him
constantly (despite our ongoing efforts to get him to attach to Simon). <br />
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For my part, I've come to realize that, while Tigger is here to serve our family, he is also a member of it. He's another kid to add to our clan, albeit a very furry one. Though he learns fast and is well behaved he still needs some of the things that any kid needs, especially in a new environment. <br />
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So -- I've re-arranged Simon's room to give them both their own space. Siblings need that, I think. Simon now has a bigger bunk bed (playtime on top, sleep on the bottom) to accommodate sleepovers with Tigger, but Tigger also has his very own corner of Simon's room with a full toy box of options for him to entertain himself with something other than the cords of medical equipment in the wee hours of the night.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga7Vb5iFkGeKHrFGkwpzOxNQtGf8795ryaaoEofj1pCoR0w-lpDp_gz_Esn_IRUrnZaBocW8PtfgAGVsI374Xq-Ydg27HVsJyR-qO3_iLZ4EYqC9JkRwGoN6uK4900aTcLQu3ZRT5NP72y/s1600/blogger-image-517413761.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga7Vb5iFkGeKHrFGkwpzOxNQtGf8795ryaaoEofj1pCoR0w-lpDp_gz_Esn_IRUrnZaBocW8PtfgAGVsI374Xq-Ydg27HVsJyR-qO3_iLZ4EYqC9JkRwGoN6uK4900aTcLQu3ZRT5NP72y/s320/blogger-image-517413761.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Simon on Simon's bed.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxY4Qvl_WRPjkX8IZpHwkZFj7zQUFIF1eUHArtS8CFU-UHqA3qfo1D7rvAbhaRl7zIZTtZdbvsrPsq1pEysB0o0wvbs0xXNgccDc2oOPvZHF0EuIHB5dbQNJJSt3knf0Fr_uHvBNI3kjG7/s1600/blogger-image--1647204888.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxY4Qvl_WRPjkX8IZpHwkZFj7zQUFIF1eUHArtS8CFU-UHqA3qfo1D7rvAbhaRl7zIZTtZdbvsrPsq1pEysB0o0wvbs0xXNgccDc2oOPvZHF0EuIHB5dbQNJJSt3knf0Fr_uHvBNI3kjG7/s320/blogger-image--1647204888.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Simon on Tigger's bed.</td></tr>
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I'm also providing Tigger with some clearer boundaries. While he behaves like a dream for Brian, he tends to ignore my commands half the time, and he pulls at his leash a lot when I walk him. Apparently, Tigger does not see this momma as an alpha (ha! If only he knew who really made the decisions around here!). I consulted with our trainer, Kim, about this and on her suggestion I got him a "gentle leader" harness that goes on his face for walking and I have acquired a rather loud clicker to get his attention. I also got some good advice from the trainer at Petsmart -- he told me to give a command once, wait for Tigger to follow it and then help him follow through if he doesn't listen to me (rather then "beg" him to do it repeatedly which is what I had been doing). So far, all of this seems to be helping Tigger pay better attention to me. We'll get there. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSGbzt98JN3MuvNzEomoJuWcNgxuueu-2__zpy1Qxrm6-1wc8U2Qv6FwmOdLnifkTgEwfPMPHq7cqoELlpVq2LsXsTiSflENF93xQhQ6EuJAOGP3hVai-TBJBTcLTsIRKzZ3P6EZ9EgpE-/s1600/blogger-image-366351045.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSGbzt98JN3MuvNzEomoJuWcNgxuueu-2__zpy1Qxrm6-1wc8U2Qv6FwmOdLnifkTgEwfPMPHq7cqoELlpVq2LsXsTiSflENF93xQhQ6EuJAOGP3hVai-TBJBTcLTsIRKzZ3P6EZ9EgpE-/s320/blogger-image-366351045.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tigger with me wearing his new "gentle leader" harness at the grocery store. He did great!</td></tr>
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Our other big challenge is getting Tigger to "attach" to Simon as his boy. He likes Simon, but doesn't follow him or pay him any more attention than he does anyone else. Of course, it doesn't help that the one thing Simon does <i>not</i> like (which we are working on) is being very physically affectionate with Tigger. He will pet him when asked to, but only briefly. If we ask him to hug Tigger, he says "no thanks." I think Simon might not yet be that comfortable with Tigger -- especially his size. However, the fact that he is as relaxed with him as he has been thus far is a really good sign. I imagine that, given a few more weeks and a lot more encouragement, Simon will come to love on Tigger like the big teddy bear that he is. I also think that this evolving bond of affection will be the thing that finally gets Tigger to see Simon as "his boy" and help him divert his focus from Brian to Simon.<br />
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Overall -- the past few days have been very exciting, and a little overwhelming. I'm simultaneously falling in love with our new addition, and tentatively feeling out this new ground as a pet-parent and service dog trainer trainee. I have so much to learn, but there is one thing I can say for certain -- the more I learn, and the more I see Simon interact with Tigger, the more confident I am that we have made the best choice for Simon and our entire family. We will get there!<br />
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<br />Laurahttp://www.blogger.com/profile/11655633293944496091noreply@blogger.com1