Olivia's Story

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. 

The Long Journey Through Epilepsy

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?

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.

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.

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.  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.

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.  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.

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.  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.

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.

“Dad, what’s going on?” I asked, “What will happen to Simon? Where is he going and how long will you be gone?”

 

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.

“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.”

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.

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.

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.

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.

“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, “What Is a Seizure?”

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.

“Why did Simon have a seizure?” I asked.

“We don’t know yet.” Said mom.

“Will I have seizures, too?”

“No,” said mom, “seizures aren’t contagious.”  

“Will Simon have more seizures?” I asked.

“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.”

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.

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.  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…

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.

“What is 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.

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.

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.

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.

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.

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.

A Shift in the Conversation

Today 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.

So, he's okay, but I am not, and I can't get back to sleep.

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).

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."

No... I haven't heard that in a while, and I did so cling to it.

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.

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.

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.

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.

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.

$#%*&!!

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.

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.

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.

I'm finally learning to have some faith in me.

Be Our Guest

Years 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.

Olivia on her 5th birthday. Sniff.

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.

'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.

It takes a lot more than lipstick to make this look good.

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. 

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. 

And it did.

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.

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!). 

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! 

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.

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!

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. 

So, thank you, Disney. For the first time in a very long time I didn't feel like we were a special needs family -- we were just a special family. And because of that, I know we will be back again soon.

How to Advocate like a Rock Star

When 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."

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. 

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 not to use the "R-word," 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 large organizations that need a wake-up call when it comes to their accessibility. 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 -- like the healthcare system, or the realm of public education. 

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) persistent 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.

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.

So, here goes:

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 seems wrong, trust that feeling. If it seems right, trust that, too.

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. 

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.

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. 

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 all 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). 

And what could possibly be more worthwhile?

Toughing it out

The 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...)

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.

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.

And then this stuff happened...

My students rocked their final presentations and reminded me why I love being in the classroom with them.

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,

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!

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.

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. 

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.

A Mother's Day Guest Post

Leading 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:

10 Things a Special Needs Mom Learned (the hard way)

I'd love your feedback! Happy Mother's Day to all the fantastic moms, especially mine. :-)

Spring Surprise

I 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...

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.

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 do 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.

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.

I'm so glad that I did.

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.

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.

I was present. I was there for that moment, which really is the greatest gift of all.

A picture worth a thousand words

"Mommy, take a picture of me!"

Big smile, looking right at the camera, using appropriate pronouns, self aware.

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.

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.

This photo, this moment, seems like a good place to pause and then begin anew.