TiggerFest!!!

Some of the kids showing appreciation for the guest of honor.

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.

Me with the awesome band, Confidence in Volume!

Before our awesome band played, I took a moment to personally thank everyone -- here is (more or less) what I said:

This party is not about a dog -- albeit it an absolutely adorable super hero dog. It still isn't about the dog.

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.

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.

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.

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.

Mom and Dad chasing the kids!

Our friends, also knowing how hard-headed I am, went right ahead and called Noelle's Dogs for Hope 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 am unspeakably lucky in my friends!

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." 

Some of the great ladies from Lutherville Lab

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. 

At his own birthday party, Jaidon 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!).
 

Simon with some of the great stuff for Tigger we were able to get with Jaidon's gift cards!

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. 

"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!).

Simon at school with his teacher, friends, and Tigger!

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.

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.

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!

Beanie Baby Service Pups in Training for everyone to take home!

Simon had so much fun he required a two-hour post party nap.

This about sums it up. :-)

My Third (Furry) Baby

I'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).

Tigger, as it turns out, has a lot of personality! He is extremely 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. 

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!

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.

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!)

 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).

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.

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.

Simon on Simon's bed.

Simon on Tigger's bed.

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.

Tigger with me wearing his new "gentle leader" harness at the grocery store. He did great!

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 not 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.

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!

Boldfaced Grace

As we sang "Amazing Grace" at the end of mass this morning, Olivia returned to our pew from the children's program without Simon and very upset. Immediately worried something had happened to Simon, I asked her what was wrong (was Simon okay, was she okay, what happened?), but she assured me that everything was alright -- Simon was with a grown up helper in the hallway and she would tell me what was going on as soon as we got outside. Together, we filed behind throngs of other worshipers exiting into the hallway and went to retrieve Simon.

We have only just started to go to this new church and, more to the point, we have just started to attend mass with Simon on a regular basis. It has taken me over a year to accept that the tiny but beautiful urban parish I've loved since my art school days could not (or would not) meet the needs of my family by providing an atmosphere in which Simon could participate. At that church there is very little in place for kids, and nothing for children with special needs. As I have come to accept that Simon isn't going to "grow out of" his inability to sit through a long adult-focused mass anytime soon (and as I started to accept that it was time for me to let go this last bastion of a former self), I looked for a better fitting parish for our family.

Upon the recommendation of a neighbor and after a little research, we settled on a large suburban church with extensive programming for children (toddlers through teens) as well as a "buddies" program (run by a teacher from Simon's school!) to help kids with special needs be included in the typical program. The parish itself is huge -- there are a ton of families with kids, many of them from Simon and Livy's schools. It is very modern and high-tech; with big screens, a rock band, and cafe that serves starbucks-worthy fare. I honestly found it overwhelming at first; a little like I had walked into an extremely friendly foreign country -- I was on constant sensory overload, but at least the crowds were smiling.

I'm gradually becoming accustomed to this new culture, and I'm learning to appreciate that it is not just a better fit for the kids, but in general the messages discussed are relevant to where I am in my own life. Today's message was to think about something we want but do not yet have, to envision our world with it in place and then to be "bold enough" to ask for God's help in getting it. Though I envisioned lots of bold things (a future where Simon and Olivia are both happily independent, good health for my family, career successes...), I kept returning to what seemed like a simple wish for grace.

It is something I yearn for often, in good times and bad. I pray for it when I am facing one of Simon's potentially catastrophic seizures and I need to have the grace to overcome my fears and focus on the present. I pray for it when an entire community has enveloped us in their love and generosity, and I need to have the grace to find the ways to show them how profoundly grateful I am without letting pride or humility overtake me. I pray for it when I am confronting a socially awkward situation, like this weekend when I went to pick Olivia up from a party and the other parents of "gifted" kids like Olivia were sedately having drinks while I was chasing Simon around the house (to keep him from destroying the antiques) as he spun wildly with hands flapping, drooling copiously and loudly reciting his current favorite television programs. In these moments I pray for the grace to be okay with Simon being Simon. To have the grace to be honest if asked about him, but not feel the need to launch into explaining or (worst of all) apologizing for him.

This morning after mass it turned out to be a good thing that I had been praying for grace. When I found Simon with the adult from the children's ministry I quickly uncovered why Olivia had been so upset. Simon's "buddy" had not been present at the children's program today, and so Olivia had taken it upon herself to try to take care of him. Despite her best efforts Simon quickly got beyond her ability to control; singing loudly, spinning, jumping and climbing until he finally accidentally kicked another child. Olivia didn't know what to do, and became embarrassed when people started staring at her brother and complaining about his behavior. An adult interceded fairly quickly and helped her, but not before she was inconsolable. Olivia told me that she was sorry that she wasn't able to take care of Simon, and that she was embarrassed by what had happened, but she also felt bad to be ashamed of Simon. As she told me about her feelings one of her school friends stopped over with her mom to see if Livy was okay and she immediately hid herself under my arm in a way she hasn't done since she was a tiny child.

Though what I really wanted to do was burst into tears, I forced myself to focus on practicing grace both for me and for Olivia. I smiled at everyone present and told them how much I appreciated their concern and reassured them that we were fine. I put an arm around each child and steered them past the crowd, through the parking lot, into the car, and I drove to the nearest Dunkin' Donuts.

Coffee and pastry in hand, Simon happily engaged with his pile of glazed munchkins, I told Olivia that I knew exactly how she felt. I know it is hard to take care of Simon when he behaves in a way so different from other children. I know it is hard to know what to do when others are bothered by it. I know it feels wrong to be embarrassed by someone you love.

And then, I told her that I had been thinking about this thing called grace. That I thought that grace was living your life everyday doing the best you could to be the best person you can be no matter what challenges you were faced with.

Olivia (who never misses a beat) asked me if Simon's disabilities were the sort of challenge that I meant; and I agreed that they were -- but not just for Simon, for our entire family. Sometimes this challenge is something that makes us different from others, and that people might stare or not know how to interact with Simon, or even be afraid of him or unpleasant to him. Olivia told me that this was exactly what she was afraid of, and I told her that it worries me, too.

But, I said, this is where grace is so important to our family, and how maybe our family can make an important difference in the world. I told Olivia that if we can be graceful by being our honest best selves, we can show everyone that Simon is in some ways different, but it isn't a bad different. It is a happy, loving, fun (and sometimes a little crazy) different. That by being a loving family we can show the world that people like Simon might sometimes need extra help -- but just like everyone else they also need respect and acceptance.

As Olivia's tears dried and I finished my coffee and cleaned up a very sticky Simon I thought about how simple what I am asking God for is. I just want us to be graceful by being ourselves. By being ourselves, I want to be an example of what love, respect and acceptance mean for people with disabilities. By being an example, I want to enlighten those around us and make them reconsider their own attitudes and prejudices. By making people more enlightened, I want to change the world for my son and everyone with challenges like his.

I simply want to change the world... which I guess is a pretty bold thing to ask for after all.

Club Friends

When we decided to try putting Simon into an inclusion kindergarten last fall (meaning that he spends part of his day in a typical kindergarten classroom instead of spending all of his day in a special education setting), I had many concerns. One of my biggest worries stemmed from something one of Simon's doctors had said to us when I asked him his opinion on special education vs. inclusion -- he said that often, for kids with special needs, it was "kinder" to keep them in a group with kids more like themselves because, "kids can be mean to people who are different."

I didn't know if I agreed with him or not. Part of me hated the implication that I should sequester my child, and another part of me wondered if he was right. He does have a lot of experience, and I know he has the best interest of his patient's at heart. Directly contradicting him, however, Simon's school felt strongly that we should give inclusion a try. They, too, have much experience and the best interests of their students at heart. After about a month of weighing pros and cons and after assurances from school that if things did not work we could change them, I decided to try inclusion, albeit with the by-now-familiar sense of uncertainty I harbor when making decisions about Simon's future path.

Fortunately, just a month into the school year I knew we had done the right thing. Simon had his second status seizure and -- despite the fact that he had only been in school with his class for a few weeks -- each child made him a card and created an amazing poster by tracing their hands and sending "a hug for Simon" right to his hospital room with their teacher and Simon's aid who visited us that night. We still keep the poster in Simon's room and I get a little teary every time I look at it, knowing how much love and well wishes were sent his way by kids that (at the time) barely knew him. They just knew he was one of them.

Over the course of the year, the child I was worried would never make friends had his first playdate, was invited to birthday parties, and even had his own well-attended "playzone party." When he was absent or ill, I was told that the kids missed him. When I visited the class, the children told me how much they loved him. Through teacher reports and classroom visits I came to see that Simon wasn't just  included with the "typical" kids -- he was loved. And, because they loved him, a child that had no interest in other kids now gets excited to see his friends. Though he still doesn't communicate in a "typical" way, the children accept him for who he is. They love his big (sometimes sloppy) hugs and always compliment his shirt (right now Simon's sole conversation with peers is "I like your shirt! Look at my shirt!").

I honestly did not think that things could get any better. Until they did.

Last month a teacher from Simon's school that coordinates the student-run "Club Friends" contacted me. She explained that "Club Friends" had been started by some of the students at the school who wanted to find ways to do nice things for people in their community. They had created care packages for soldiers, made cards for children in hospital, and provided blankets to those in need. They had heard about Simon and his seizure dog in training and the Club wanted to help with a penny drive.

At the time, I told them we had paid our portion of Tigger off (with MUCH help from so many friends!), but that we were waiting on a grant from the Chelsea Hutchison Foundation. I suggested that, if they still wanted to help, it might be a good idea to take whatever was raised and donate it to the Chelsea Hutchison Foundation. Not only would they be helping Simon by putting money towards his grant, but they would be freeing funds to help more children waiting for life-saving pups in training. They agreed and so I came to visit the Club to talk about epilepsy and service dogs. Then, quite ably, they kicked off the campaign, calling it "Cents for Simon."

I was very impressed by the fact that these very young people were so actively seeking ways to make the world a better place, one act of kindness at a time. I was also very touched by the kids desire to help a kindergartener that most of them didn't know. However I am sorry to say that I also underestimated the impact they would have. Not only did the cents (and dollars) pour in (they had to switch from collecting the change with buckets to tubs!) but emails like this came to me through Simon's teacher:

"The day the announcement was made the school was collecting pennies for Simon, M came home so excited and immediately emptied his piggy bank.  He proceeded to ask his sisters and parents for their change for Simon because it was so important for Simon to get his seizure dog.  He called his cousins in Chicago to ask them to send their pennies and when he received the money in the mail he was so excited to take it to Simon.  He also called his grandparents and uncles and asked them for their pennies, who all handed him a baggie of pennies.

Tonight at family dinner he said he had something very important to say. He proceeded to tell everyone about his friend Simon who has a seizures and needs a dog to help him but it was very very expensive and we need to help him.  The other people who were there for dinner also gave a small donation to M for Simon.  I can not tell you how excited he is to be helping his friend."

I went through a box of tissues the day I got that email, and it didn't stop there (and I've lost count of the tissues). Some children had lemonade stands asking for donations, some parents made incredibly generous donations on behalf of their kids, and the outpouring of love and support from the faculty and administration of Simon's school was absolutely staggering.

Thursday was the last Club Friends meeting of the year. They asked me to come with Simon so they could show me what they had been able to raise. As Simon happily spun in a circle in the middle of the room singing a song, the Club's little classroom filled with kids, teachers, staff, and parents. Standing in front of the group, they told me that Club Friends had set a goal of raising $2,000 -- and they had achieved it. They handed me a card with a check and, as astounding as the amount itself is, it was what the card said that so overwhelmed me.  

"Keep your spirits up. In life we are certain to be confronted by circumstances and challenges beyond our control, but keep your spirits up... you always have the support of others who truly care!" -- signed the Faculty, Families and Friends of the entire school.

As I openly wept (thank goodness I remembered to wear waterproof mascara for once) and a fourth grader found me a another box of tissues, I turned to the child nearest me to thank her. I told her that it was hard for me to put into words how much it meant to our family; that she and her friends should care so much about Simon.

The little girl (who looked about 7) took a deep breath, tilted her head to the side, and squinted at me for a long moment -- as if she were trying to decide how to explain something to someone who really doesn't get it. "Well," she said, "Simon's just a little kindergartner, and he just needed some help..... so we helped him."  

Arts in Action

One of my very favorite essays on design is called "How Good is Good" by prominent New York-based graphic designer, Stephan Sagmeister. In the essay, Sagmeister talks about the fact that he loves what he does and he is doing good work, which is great until he finds that he wants to do something more than just make things that look good. He also wants to do good. To that end, he attempts to apply his creative problem-solving skills to big world problems (like disaster relief). However, he quickly finds that his ideas are shot down (not something he is used to) because he doesn't understand the problems well enough -- he is too far removed from the situations he is trying to impact to have the correct perspective. Too far, that is, until 9/11. Suddenly the big world problem is on his doorstep, affecting his community, and he understands it all too well.

In the midst of that tragedy Sagmeister wishes he had the skill to do something direct to help those around him. He wishes he was a rescue worker, a paramedic, or a firefighter. He feels helpless because he knows that even if he went down to ground zero he wouldn't be able to do much other than get in the way. Fortunately, he eventually comes to realize that he can do something -- he can do good by doing what he is good at. He uses his prodigious skills as a designer to create the logo, T-shirts, advertising, and album cover for the Concert for New York that raised $20 million in funds for firefighters and policemen.

The reason I love this essay is because it reflects what I try to do in my own practice as a designer. I try to do good work, but I also choose to do that work for causes I believe in (like education, the arts, and health care). The message that we can make an impact by doing what we love, what we are good at, is one that I've cherished -- but I never felt that it applied to the problems I have been facing in my own life. When it comes to things with Simon I always try to be proactive, but I also find that there are plenty of times when I feel helpless.  I sometimes think I can't make a big enough difference because I am not a neurologist, or a therapist, or a teacher. I want to fix a problem I fear I have no control over.

So, when the art teacher at Ridgely Middle School contact me because her students had decided to make Simon and Tigger the beneficiary for their "Arts in Action" event, it seemed like some sort of cosmic twist of fate (or maybe the hand of a higher power trying to remind me of my own convictions). One of the Ridgely students is Simon's Kindergarten teacher's daughter, Kayla. Kayla knew about Simon from her mom and, when it was time to make suggestions about the focus for "Arts in Action" (and where the proceeds from the silent auction of the student artwork should go), she suggested Simon's needs and shared this blog with her teacher and classmates. They agreed, and last Wednesday we attended this great event as a family (and Simon attended as the rock star he is).

It was a great night that celebrated art in many forms (there was a play, a talent show, lots of student art and crafts to participate in). The turn out was wonderful and there was a huge showing of support from Simon's school. I'd created a slide show about Simon, Tigger, and epilepsy awareness, and the students made posters as well. Lots of people stopped to talk to me, some to ask questions or share their personal stories of a loved one affected by issues they had in common with Simon, and some people just said they were happy to meet us and were keeping us on their prayer lists.

In addition to being an incredible showing of community love for our little guy; the event got me thinking that maybe I'm not completely helpless when it comes to some of the problems we've encountered on our journey with Simon. That maybe, by doing what I am good at, I can make an impact on some of the big world problem on my very own doorstep. So, after a bit of research (okay, a lot of research), I determined that one of the big problems I see is a lack of patient education during epilepsy diagnosis. Not once have we been given so much as a URL by our doctors to help us find resources and/or support -- and, sadly, I found that my experience is far from unique. Almost everyone I spoke to about their experience said that when they were diagnosed with epilepsy they went home with little more than a prescription and a "good luck, let me know if you have any more seizures, see you in a few months" from their doctor.

Now, THIS is something I can do something about. I design patient education brochures (very nice ones, I might add), all the time for conditions as diverse as AIDS, Insomnia, and Hearing Loss! I could easily create something for Epilepsy... I just need a doctor to help with the writing, grant money to fund the project, and a way to find visibility to get it into the hands of doctors and then into the hands of patients. In my experience this happens by working with regional cause-focused foundations and the local heath departments. So.. earlier this week I called our local chapter of the Epilepsy Foundation. I told them what I felt needed to happen and why. And you know what, THEY AGREED WITH ME. Tuesday I have a meeting with several board members and the executive director. I intend to make a very strong case.

I'll let you know what happens. But, even if I get shot down, I know I'm in good company (like my buddy Stephan) and I also know that I am in the right. In this case, there is action that needs to be taken and it is art that is going to make it happen. Thanks to the students at Ridgely Middle School, I will keep trying and working and bugging people until I get accessible, resourceful, imperative patient education into the hands of those that need it.

Thank you so much for reminding me of the potential power for good I can have by doing what I am good at.

The theme of the night was "Pop Art!"

Some of the amazing sculptures created by the students for auction.

Simon with his super-awesome Kindergarten teacher and her super-awesome daughter, Kayla, who presented her classmates with the idea of using Art Action night to help Simon after she heard about him from her Mom. I know her mom is VERY proud of her, and I am too. What an amazing, kind girl!

Simon and I with Mrs. N, his fantastic aid from school (I don't know what we would do without her!)

Simon got into the action with his favorite creative pursuit, painting.

For some reason, they thought that it would be a good idea to give Simon the microphone. Rather than graciously thank his supporters, he took the opportunity to belt out a (rather long) tune in their honor. Complete with a big finish and a dramatic bow at the end. Thank goodness he's cute. (They even gave him an encore -- I was looking for a gong...)

Surviving Status

It happened again, Simon's third status epilepticus seizure in 18 months. It lasted for three hours, starting with only an increased heart rate and eye deviation, but ending as a full tonic-clonic seizure.

Though, by all accounts it was a major episode, a lot went right this time. That's the benefit of experience, I suppose. Because of the pulse oximeter Simon wears to bed, we had an alert system in place and caught the episode right away. Because we have been through this before, we had a plan in place and thereby avoided the chaos and confusion of ambulances and multiple hospitals by driving ourselves. Because we were able to go directly to our "home" hospital where pretty much all of Simon's doctors and care is centered, they had a record of what medications had worked in the past and were able to follow it carefully, without overloading him with meds and putting him into a coma. Because of this, we avoided the intensive care unit and, just 33 hours later, we are home again.

Simon (who is officially the toughest kid I've ever known) miraculously came through it okay. He's still loopy from the meds and very tired and irritable, but he is talking to us and seems otherwise fine. We have follow up appointments set up, more to discuss with our doctors, and more to worry about (for example, we have no idea why he had this seizure)... but for now, I think, a picture is worth a thousand words and I just want to focus on our miracle. Simon survived, he is my miracle, and for now I can't be anything but grateful.

From beginning to ending, here is how we survived status together, again.

Almost as soon as we got to the hospital, Simon's seizure went from a partial to compex episode and was full on tonic-clonic. The very professional staff at Hopkins delivered lots of meds and oxygen, a little at a time. We stayed by him and were made to feel welcome throughout the entire episode. (The Neurologist wanted to know what area of the medical field we were in. He was a little confused when we said graphic design).

Simon stayed in the intermediate care ward while they decided whether to move us to the PICU or a floor room. We waited anxiously for the medicine to take effect and for the seizures to stop so we could avoid intensive care. Simon snored. Loudly.

As soon as Simon started to come around, he requested his teletubby video. Just like the very first time he woke from status. I wonder sometimes if he dreams about them.. (they are pretty freaky).

No rest for the weary. After sleeping off the medicine all day, Simon was up all night. To distract him from the wires and IV that were upsetting him, I took him on a very posh wagon tour of our ward.

Finally, a few moments of rest just before dawn.

I knew we were on the mend when all Simon wanted to do was go outside and play. 

Playing cymbals in the hall and your room is a great way to convince the nursing staff that you should be allowed to discharge early.

Finally, our discharge papers arrived. We tried not to run and skip on the way out.

We're really leaving!

Thank you to all the doctors, nurses, and staff at Hopkins for taking care of our baby. Thank you to everyone that visited, prayed, sent positive vibes, texted with me in the middle of the night, sent notes of encouragement over facebook, and continue to support us and our Simon with your love. I can't put into words what that means to us. It helps give us the strength we need to keep going.

Good Things to Come

I am SO excited! Over the past couple of weeks, Simon and I have found out about so many cool things, heard great news, and have gotten the ball rolling for lots of awesome stuff just over the horizon.


On the cool things front, this potential development in treating status seizures has me really excited.

Super speedy life saving meds!

It is an epi-pen like device that a caregiver could use to deliver effective medication as soon as a seizure goes past the 5-minute "normal(ish)" window. As you may know, the sooner you can treat a "status" seizure, the better chance you have to stop it before it becomes life-threatening. Right now, the options for this sort of immediate treatment aren't great (rectal diastat is what we've been given) and aren't totally effective in practice. A different medicine in a more convenient and effective delivery method are a really awesome advance that I can't wait to get my hands on!

Footwear with awesome hardware!

Another cool thing is the new AFO (ankle foot orthodic) that we have ordered for Simon. Simon has had an AFO for a couple of  years now, and we replace them as he outgrows them. This time, instead of being directed to our usual (slightly sketchy) orthodic equipment shop, we were able to get our casting/fitting done at Kennedy Krieger. The difference in treatment and options was like night and day, and I am (again) feeling so blessed that we have access to such great resources for Simon. Our new AFO will be hinged (articulated) and should allow him a greater range of movement. Of course, this also means he may run faster and be harder to catch... hmmmm....

Torture.. I mean, therapy!

In more cool bionic Simon news, we have been "restarting" the CIMT (constraint induced movement therapy) program with our therapist at KKI in a reduced capacity. Since completing the program last winter, Simon had been using lefty as an assist pretty frequently, and he had maintained the gains for what we were told was a record amount of time. However, over the past few months, we've noticed the tone in his hand re-tightening and he has been using it less and less. So, with the support of our amazing KKI therapist, we've made a new cast for his "good" arm and (instead of wearing it for a month solid) we are having him wear it for therapy sessions and therapy "homework" sessions a few times a week. The really amazing thing is how quickly he is regaining the ground he lost. The last time we participated in this therapy it took weeks to manage a pincer grasp, this time he was pinching and dropping marbles and goldfish crackers within hours!

Super dogs in training!

In the area of great news -- guess what!?! TIGGER IS PAID FOR! Yes, I thought it was a mistake at first, too. But no, through the incredible amazing awesome mind blowing humbling I-cry-every-time-I-think-about-it contributions of our friends and family (and their friends and family), and some folks I don't even know but who have heard about us and our Simon, the CEO of Noelle's Dogs Four Hope was able to call me last week and tell me that (barring a grant we are in line for from the Chelsea Hutchison Foundation), Tigger's account is settled.

AND THAT'S NOT ALL! The art students of a local middle school voted to donate the proceeds from their upcoming auction of student work at the school's “Art Night” towards Tigger. We are going to use those proceeds to help pay for Tigger's final training trip to Colorado (where he will complete training and take the official test to become a certified service dog!).

I am (in a rare moment) struck speechless by the incredible way our community has embraced us and our little guy. As I said in an earlier post, the most surprising and amazing thing to come out of this journey has been to find out how blessed we really are, and how much love surrounds us. THAT is what I know is going to keep me going when times get tough. One day, when Simon can understand, I cannot wait to tell  him the story of how Tigger came to us by way of love for him. (damn, now I am crying again.)

Love Triangle

And, finally -- awesome stuff on the horizon! Simon qualified for Music Therapy at school. I found out about the therapy almost by accident, I just happened to be in the classroom when the therapist (who is only at our school a day or two a week) came in to work with another student. I was intrigued -- Simon LOVES music and has a great memory for rhythm and rhyme, so I the idea of using those strengths to work on other therapeutic and academic areas of need seemed just plain brilliant. I did have to push a little to have him evaluated, but once he was it was immediately apparent that it is a great fit for him. Being able to incorporate it into his IEP feels like a mini victory and I could not be more thrilled to see what benefit this brings him.

Another exciting thing to come is an inclusion summer camp! I've been struggling with what to do for the kids this summer -- our fantastic babysitter is headed to Thailand (!), and Simon may be participating in a 4 week "booster" program at KKI with the dates still undecided. I've been thinking about looking for a new sitter to help in the interim (I probably should do that no matter what), but I also really wanted both kids to have a chance to get out of the house, have fun and interact with other kids for at least part of the summer. Camp seems a natural choice ... finding a camp is the problem. For Olivia it is a snap -- if anything there are too many options (art? math? music? adventure?), but finding a camp to fit Simon is a bit more complicated. Last year, I attended camp expo (where we found League of Dreams which I am SO looking forward to this year!) without much luck. Since then, I've continued to search, but so far the options I have found for kids with special needs like ours are few and far between (sometimes literally far). Just make things MORE complicated, I really didn't want something exclusively special needs -- Simon has done so well integrating with his typical kindergarten peers that I was hoping for a mix of kids where everyone was, well, included, but still cared for as needed.

I was starting to think that this didn't exist UNTIL I was in (another) IEP meeting last week discussing ESY (extended school year) options with Simon's team. While expressing my concerns about typical ESY (which are another post unto themselves) a couple members of his team had an "aha!" moment and suggested a grant-based inclusion camp through our school system. Our new music therapist is one of the primary instructors and (I've already decided I love her) she was nice enough to tell me about the camp and get BOTH Simon and Olivia onto the list. I am over-the-moon excited. This is a true inclusion camp with lots of fun activities, camp themes, and cool stuff to do. In addition, many of the "typical" kids are sibs who not only get to have fun alongside their "special needs" siblings (not a situation you always encounter), but they get to meet kids from other families like their own. Seriously, how cool is that?!

SO, stay tuned Simon fans! With so much progress, so much support, and so much to look forward to it is going to be a very exciting Spring!