The rainbow after the storm
Yes, like the rest of the world we have been dealing with the pandemic too. It’s been a difficult two years. Hudson wasn’t able to access his education virtually – it was a total disaster. I started homeschooling him and Addison. That was a challenge, but I learned a lot about how to modify his work for him and about how capable he actually is. I also learned he is completely uninterested in learning from me and is entirely motivated by being with his peers. Of all our kids he was the one who struggled the most with being home during the pandemic. His social skills regressed, he was emotional, and bored. The twins at least were able to attend preschool in person last year – which was a saving grace!! Then, during the 2020/2021 school year they brought him back for half-days in Gen Ed with his peers and half-days in Special Ed. Again, it was a total disaster. Not only did he struggle with being switched from the structured gen ed environment to the self-contained classroom but there were safety issues. He was often left in a room with no teacher at all. They also refused to provide a one-to-one paraeducator even though I had proof they had received funding for one. Once we started raising our concerns the district retaliated to the point of not responding to my emails so we ended up hiring a lawyer to help navigate this.
On top of that, last November in the middle of the pandemic, we flew to Texas to have a surgery called SLOB on his left hip that was coming out of the socket. The surgery was supposed to prevent the hip from coming out and it’s a much less invasive surgery than a Femoral Osteotomy. Needless to say, flying with him during the height of the pandemic for surgery was incredibly stressful. It cost us thousands of dollars to do it. Immediately following surgery we all proclaimed it a huge success! His hip looked amazing! He recovered beautifully and was off pain meds quickly. He had to be in a brace for 6 weeks – we took the brace off and got another xray, and the hip was COMPLETELY OUT OF THE SOCKET! I mean completely. It was worse than before surgery. Surgery was a complete waste of energy, time, money and trauma that we put him through. It was our choice. We put him through that and that’s the trouble with being a special needs parent – you decide which doctors to listen to, you get the second opinions but at the end of the day you are still the ones making the call. In retrospect, it was the wrong call. Looking at the huge scar on his hip made me feel sick to my stomach for months afterward. We should have just left his hip alone. Since then, we’ve gotten three opinions on what to do now that the hip is out. We have decided to leave the hip out of the socket for a multitude of reasons, which I won’t go into here. He’s not in pain, but it does mean we have to be extra careful lifting him for the foreseeable future.
Ok so – back to the lawyer. We were advised to pull him from the district immediately and find a private school for him. BA HA HA. Private school?!?! We thought that sounded crazy. Our lawyer had some experience here and felt confident we would find a place. She told us Catholic schools in particular seem to be more open to special needs students. So, I started making phone calls and the answers were all “no.” The schools were not even interested in meeting him. I would tell them “but he’ll be bringing his own para with him.” Still no. Think about that. The answer was No. “No we will not take your money because we do not want a disabled child at our school.” I was not surprised by this actually, but this shouldn’t be the norm. It should not be that certain children are welcome within our society and others are not. You cannot have a school poster that says you value Diversity, Equity and Inclusion and then literally be telling certain kids they aren’t welcome there because then you’re just lying.
So what happened? I met another mom who had just been through something similar with our district who put in a good word for Hudson at a Catholic school downtown. The principal was open to meeting Hudson and talking it through. They have NEVER had a student like Hudson before. We had to tour the school with him to even determine how accessible it even was to a child in a wheelchair. The few parts that weren’t accessible have alternate routes for him so it was workable. Next we met with his teacher and we had some really tough conversations about what this would look like. We also had to find a para for him. As it so happened, his favorite caregiver had recently started working with us again and her schedule had just opened up. There is no one on this planet I would trust more than her. Maybe this was going to work after all . . .
During our initial tour I’ll never forget that every single person at that school we came across talked directly to Hudson, not to me. (That doesn’t happen – ever – and certainly not to that degree). At one point a Kindergartener asked very loudly across the courtyard “why is he in a wheelchair” and his teacher responded, at the same volume “That’s Hudson – everybody say Hi Hudson!” And 17 Kindergardeners all yelled “Hi Hudson” and smiled and waved at him. She handled it brilliantly. Turns out after placing him there they all handled him brilliantly. I’m still left wondering – Why? and How?? How does this school with no training in special education, no funding for special education how do they know exactly how to treat a child in a wheelchair?? He was never treated like that at public school and if he was that person was the minority. Is it because they never have had experience with a child in a wheelchair before so there wasn’t even a precedent to treat him as anything less? Was it because they are religious and they see every child as a child of God first? Is it because they are just really good people? I don’t know, and maybe it’s a combination of things but what I do know for sure is treat him like a human being and I know that the environment is incredibly loving, warm and welcoming. He belongs somewhere now in a way he never has belonged before. He’s accepted 100%. He has a best friend there. He just wrote his first story. He learned his 5 times tables which his math teacher said was the highlight of the trimester for her because it was the goal she had personally set for him. The kids fight over who gets to sit with him at lunch. His classmates encourage him and he encourages them. And it’s not just been good for him. His principal told me he has brought so much to the whole school.
I have so many beautiful stories I could share with you, but I will only share my favorite one (so far this year). Hudson always gravitates towards the kids playing soccer at recess. They were having him play goalie because nobody can get the ball past his wheelchair when he parks it in front of the goal. It was effective, but it wasn’t always the safest. A couple of times they hit the ball on his talker or his joystick and once almost his head. On this particular day Hudson really wanted to play, but his para said he couldn’t as goalie anymore. Without any prompting, one of the girls from his class accepted that challenge. She says “Ok” and wedges the soccer ball between Hudson’s feet on his footrest. “Take it to the goal” she told him. He starts driving down the field. The kids from each team start pretending to get knocked out of the way by his wheelchair as he makes his way down the field. He’s cracking up the entire time. He gets all the way to the other goal and then another boy from his class comes up and pushes the ball from the spot between his legs into the goal. So now they are all cheering and screaming for him. Again, HOW?!? How can we say inclusion is so difficult when these kids just get it! They get it 100%. You don’t have to teach inclusion – you model it!!
At the beginning of the year his Science teacher came up to me and said “you know, when I first learned about Hudson I was really nervous about having him in my class but about 3 days in I realized he’s no different than any other kid in there.” Such a simple simple statement – this is how it should be for all teachers and IT’S NOT!!! We aren’t even close to this mindset. When you really start looking under the hood and peeling back the layers why Washington State’s numbers are so low when it comes to inclusion it has nothing to do with funding, or training. It has everything to do with the fact that the majority people in education do not feel children like Hudson belong with their neurotypical peers. They literally ignore 30 years of research and instead continue with their own biases against this population. I don’t care how far behind a child is or how disabled – research shows that all children benefit from inclusion. Hudson is proof of that. He is on the more severe end of the spectrum and this school has found a way to be inclusive. It’s not nearly as hard as you think if you have the right attitude. And that school is raising better leaders because of it. Some of those kids may grow up to pass laws that actually consider the needs of all citizens, some of them may grow up to architect buildings that are actually accessible. If you lock disabled children away in a contained classroom their peers miss out on the opportunity to interact with neurodivergent children and yes, they are stifled because of it. So yeah, it’s been a difficult year, but you know what? We all came out on the other side better and stronger for it. Hudson now has a placement I could only ever have dreamed about and we never would have ever pushed for this if it wasn’t for the pandemic. We did settle our lawsuit too which means private school is paid for for this year. After that we will find a way to keep him there because he is worthy of an experience like this.
I’ve been asked that a lot lately how Hudson is doing so it’s probably time to write an update. Truth is he’s doing FAN-TASTIC!! He hasn’t had a grand mal seizure since last July after starting the ketogenic diet for epilepsy. This means he hasn’t been in the hospital since then either – in one month we won’t have been in the hospital for seizures for an entire year!! He’s just started a wean of his last pharmaceutical for seizure control. In a few more months he will be completely off pharmaceutical seizure meds and have control of his seizures with the Ketogenic diet and CBD only. I will be so happy to have him off those meds! The only possible side effect has been swelling in his cheeks – we are still trying to figure out why his face has swollen so much – he’s getting some tests done with endocrinology.
His stamina driving his power chair continues to increase as well as his skills. He wants to drive everywhere all day long and he wants to be a part of everything happening. It’s so much fun to see him assert his will and go where he wants to go. He still needs someone with him the entire time he’s driving. His back-up skills still need some work and left alone a 300lb. power chair can do some pretty good damage to feet and walls. However, we have been playing with more and more independence. For example letting him drive back and forth on the sidewalk in front of our house while we watch from the driveway. It has been an interesting journey because in a lot of ways he never had the opportunity to push boundaries until now. It’s resulted in a lot of personal growth for him and he’s acquired a lot more skills than just driving by having mobility. He’s had to learn to stay with us when we are in the store – he can’t just take off down the another aisle by himself. Or driving down the street we’ve had to teach him to look both ways and that he can’t go farther away from us then we can see him. I’m still so proud every time I see him navigate a tight spot – he’s a pretty amazing driver when he wants to be. He also still plays power soccer twice a month with other individuals in power chairs. He’s getting better and better. He’ll now take the ball towards the correct goal but still prefers to pass the ball instead of make the goal himself.
He’s using his speech device quite a bit more as well. I think that’s because his power chair has a mount on it so his speech device is always with him. He’s creating the beginning of sentences like “Addie play ball boy.” I don’t know why but he refers to himself as “boy” on his talker instead of “me” or “I”. It doesn’t really matter because he gets his message across. He’s actually giving his first presentation in front of his class this week – he’s doing a giraffe report from his speech device. I’m really hoping for a video!!
In addition we finally have him in General Education and the consensus from everyone involved is it’s working really well! The phrase used was actually “he does so much better in Gen Ed.” Following that statement they even decided to do push-in services meaning instead of pulling him out of class for PT, OT and Speech they are delivering the services right in his classroom. Academically he’s progressing faster, socially he’s a lot more accepted by his 2nd grade peers and his social emotional development has grown as well. His Gen Ed teacher takes full responsibility for his learning in the classroom and is working hand in hand with the Special Ed teacher. He was automatically placed in Gen Ed for 3rd grade next year but of course new teacher which makes me super nervous we’ll need to advocate all over again, but such is the life!
Creating paths where none exist
The depths of “ableism” are deep. So deep that it’s like a sliver you can’t see. You know something is there but you’re not sure what it is until things start rising to the surface and you recognize the bedrock of the words and decisions underneath. The amount of advocacy a parent must do just to have their special needs child eligible to receive the same level of respect, experiences and education as their peers is seriously CRAZY. As I write and I speak and I continue this march forward, I realize again and again that the path to inclusion isn’t even visible. The door is closed. It’s been closed since the day he received his first label. His first diagnosis. Since he was 4 months old! The day the birth to three evaluators came to the house to tell me he’d be in special needs preschool. I was shocked that at four months old his future was written and decided for him. And I realize now that once he received that label and qualified for those necessary services it also meant he was placed on a particular track and he went into a system that is flawed and outdated. It hasn’t progressed with the times. It’s based upon a belief system where pregnant women say things like “as long as it’s healthy” because they think that’s a socially acceptable way to say they don’t care the baby growing inside them is a boy or a girl. I don’t blame the teachers, the paras or the special education directors. The barriers they put in place are put there with good intentions. They are put there out of a belief that this is better for our children because the specialized education they received has told them so. The barriers are put there because they believe that our special needs children are incapable. They are put there because of tradition, because that’s the way things have always been. Instead of seeing what our children are capable of they decide they can’t and therefore they shouldn’t. So we move them to another room. We separate them. We tell them to instead focus on life skills. At the age of 6!!! We teach other children how to interact with them. The staff is kind and doesn’t demand too much of them. Their schoolmates are also taught to be kind to them. But their classmates know these kids are different. They are separated, held at arm’s length. Not too close. The language we use gives it away as well. We use words like “the kids were really sweet to him – they allowed him to have a turn.” We “allowed” him as if he didn’t belong but we tolerated his presence and let him have a turn even though he really shouldn’t have been there.
These labels, these tracks come at a cost of stripping away from him some of his humanity. He becomes the disabled kid first and a 7-year-old second. When that happens, I hear things like “How do we handle this situation?” “How do you handle it with any other 7-year-old?” I’d ask you back. In this track I have to remind them again “Remember, he’s a 7-year-old first. He just wants to be treated like everyone else.”
The path to inclusion is so elusive that when you start talking about what it means you can’t even agree on it. Does it mean he has a seat in a general education classroom? Does it mean he has a certain percentage of his education being delivered in a general education class? Not in my opinion. Inclusion to me anyway, starts first with the belief that everyone, even the “unhealthy” ones and the disabled ones are valuable human beings. Everyone, regardless of their ability has something to contribute, has the potential to learn and grow. The belief that a non-verbal, non-mobile, epileptic child is as valuable as his able-bodied peer. That he’s as worthy of an education. That he’s as worthy of friendship, of love. The belief that he has skills worthy of exploring, strengthening. Inclusion is a mindset. Inclusion doesn’t mean special treatment it means equivalent experiences. Equivalent Experiences. Just start there. Take any situation and let’s look for the equivalent experience he can share in. Is it going to be the same? No. If you tried to make it the same, you’d fail and then you’d use that as justification for why this can’t work. Why he should be separated. But if instead your looking for a way to give him an equivalent experience born from what he CAN do then your including him.
For example, not all kids are going to have dance moves that look the same. Everybody moves to the music differently. Everybody hears the music differently. If your expectation is because he can’t move with his legs and so he shouldn’t be included your missing the mark. He dances by driving his chair in a doughnut. He swirls and he twirls and as the music gets faster he’ll start shaking his head from side to side and maybe even his arms and torso. That’s his dance. He can’t walk. He can’t talk. He can’t even eat by mouth. But he dances. Look instead at what he CAN do. He’s not going to fit into your mold. You’re going to have to think outside the box. Your going to have to believe he’s capable. If you don’t see the possibilities of this 7-year-old behind that disability you are crippling him much more than his brain ever has.
For all the things that are hard about having a special needs child it also provides opportunities to experience some of the most beautiful things about the human experience. This year Hudson is joining a power soccer team as well as Boy Scouts. Honestly him starting something new is a little nerve-wrecking. Will they be welcoming and accepting of him? Will they include him as part of the group? Is this going to work for him in terms of accessibility? What haven’t I thought about that is going to be difficult that I can prepare for? So we arrive (late as usual when traveling with all 6 of us) and this second grader comes right up to Hudson, squats down so he can look him in the eye and says “hi.” I asked Hudson if he could say Hi by waving back (subtlety let’s people know he can’t talk so they don’t think he’s being rude). What typically happens is kids walk away from him at this point or they look to their parents clearly looking for guidance on how to handle this situation. But this little guy whose all by himself doesn’t walk away. Instead he continues to make eye contact with Hudson (not me) and he asked Hudsons what’s his name. So at lightning speed I get Hudson’s talker out of his backpack so he could answer for himself. Hudson then told him what school he went to and then asked him “how about you?” That was the start of their back and forth conversation.
So what you might think. A kid talked to Hudson. Well, truth be told – these normal social interactions don’t happen – ever. For the handful of times a child has actually come over to say Hi to Hudson it usually ends up in them walking away. More typical though would be to overhear a child say loudly “what’s wrong with him” and then out of the corner of my eye see a parent shuffle the child away in hushed tones. This is actually so common I ended up posting in our towns Facebook group asking parents to just bring their child over to say Hi if they see us out and about. I asked them to bring their child over to ask questions if they are curious but don’t shush them away like talking about disabilities is a bad thing. But I digress because that’s not this story.
This kid was genuinely interested in being Hudsons friend and knew exactly how to connect with him. Hudson asked “do you want to play with me?” Since we were meeting in a library they picked out a book together and he started reading to Hudson. Hudson pointed at the pictures and he would respond by saying things like “yes that’s jaba the hut.” Hudson followed him out into the hallway and they ended up next to a window seat. At this point the boy turned to me and asked if I could help Hudson sit next to him. I was amazed because I thought this kid had completely forgotten I was there – the entire interaction was between the two of them. But no, he hadn’t forgotten but he did know exactly when Hudson needed help and how to be his voice and ask for it. Can you imagine how fast I jumped up to unbuckle Hudson and move him to the bench? They sat right next to each other reading a Star Wars book and this little guy started acting out the book and Hudsons started imitating him. They were using light sabers and flying spaceships together. At one point he says “I like Hudson. He’s fun.” This kid saw past Hudsons disabilities and was able to connect with him in just the right way so they could build an authentic friendship. He respected Hudson’s humanity in a way most adults don’t know how to do. It was also awesome to see Hudson use the tools he has (power chair and speech device) to spontaneously build this friendship. It was everything we’ve been working towards.
The timing of this interaction couldn’t have come at a better time. It was validation that we are making the right choices for him this year. We’ve decided to try a General Education classroom again. We realized too late in the year last year that while he learned a lot in his pull-out sessions he also lost out on a lot. He was seen as a “guest” to the classroom and not really a member of the class. This year I had a pre-emptive conversation with his second grade teacher about inclusion and why it’s important. As this conversation was unfolding I came to the realization a few days into the school year that we needed to try Gen Ed again. As evidenced by his ability to drive a power chair, he has proven over the summer that he is capable of learning given clear expectations and consequences. He is an incredibly social child. When we go to Costco he takes his chair and drives right up to all the sample ladies even though he doesn’t eat anything by mouth. Everytime a car passes in the neighborhood he turns his chair to wave hi to them as they pass. Last year he was the “fist bump” kid who loves to give everybody fist bumps in the hallways at school. His Gen Ed teacher this year was totally on board with this plan as she develops curriculum at each childs level so he will be working on his individual IEP goals in a group setting in the classroom. We agreed if he’s not focused or being disruptive he’ll get taken out into the hall. I’m confident that given the consequences of lost social interaction he’ll quickly learn how to be a member of the class. I believe the social piece this will bring to his learning is just as important as numbers and letters. He’s done two weeks in Gen Ed so far as a trial and I heard it went REALLY well. So now we are just waiting on some data collection and then hopefully he will get his IEP updated. Cross your fingers this works out for him!!!
Did you know?? Washington State falls behind in this area and is 3rd worse in the nation in terms of excluding special needs kids from their typical peers and classrooms. https://www.king5.com/article/news/local/washington-kids-with-special-needs-often-denied-right-to-learn-in-general-classes/281-552757498
And – there is actually a “just say hi” campaign put on by the Cerebral Palsy foundation because our experience is pretty typical and it’s something people have to be educated about. Be educated. Just say Hi and then see where the conversation goes from there. There’s some cute videos on this site about the campaign. Love you guys!
I may know in my heart that I’m doing all I can for Hudson but in truth it’s not enough. It’ll never be enough. This morning I looked at him and just thought “You deserve better.” I’m waiting for a call back from the neurologist. I swear I spend all day on the phone. If I’m not talking to insurance companies, home health companies, pharmacies, or specialists I’m paying a medical bill. It’s been two weeks now of back and forth phone calls with the neurologists office. While the ketogenic diet has stopped his tonic clonic seizures they haven’t done anything for his ESES. Although Hudson looks like he’s sleeping peacefully at night he’s actually suffering from near-continues spike waves, or Electrical Status Eptilepticus in Sleep (ESES). He’s seizing about 70% of the night right now. During his last EEG they increased one of his meds and now he’s a shadow of his former self. He has no energy, he’s hardly smiling, hardly moving. He’s having difficulty even driving his power chair and will just fall forward onto the joystick sometimes. When things are rough my first emotion is always anger. I usually use that anger to my benefit – start making phone calls, posting to my special needs group on facebook asking for advice. At some point I usually get angry (for the 4 millionth time) that this is all because of a stupid virus discovered some 60 years ago but yet has no vaccine or even awareness.
On our last phone call the neurologist gave us the OK to take his Onfi down a little bit and yesterday he was smiling and happy and talking up a storm. This morning I woke up to his seizure mat and it wasn’t a false alarm. He had about a 3 minute tonic clonic. So as I go through the motions of the day I get more and more anxious. I’m waiting for the call and honestly I’m preparing myself for a fight. I’ve been doing this long enough to know how this is going to go down. It’s going to be easy for them to just suggest we increase his dose back up again and I do agree the meds are the lesser of two evils but we have to find another way. Having him completely drugged up all the time isn’t in his best interest. He already struggles so hard to do things like use his talker or drive his power chair and having him this sedated sets him back SO much!! His quality of life is definitely suffering. I look at his sweet face and I know that he’s counting on me. There’s nobody else on earth who can shoulder this responsibility better than Scott or I. It doesn’t fall to anyone but us – but that responsibility lies heavy on my heart. It doesn’t let me sleep at night and it causes me to be worry about him all the time. That’s what they mean when they talk about caregiver burnout. It’s not physical, it’s emotional.
All I ever want for him is for him to be his best self. We found this amazing somatic technique called the Feldenkrais Method that is truly ahead of it’s time in terms of understanding brain plasticity and the conditions to rewire movement patterns but yet he’s so sedated from the seizure meds he’s not moving!! His diagnosis was never supposed to be regressive. He wasn’t supposed to have a shortened life expectancy. But the these seizures are making him regress and we have had conversations about the possibility of losing him. And then I see facebook posts like “just had a baby and so nervous to travel with my one typical child for the first time” and I’m like really??!! That’s what your big worry is? Is your life really that easy? And my first reaction again is anger. And I know that’s not fair. Logically I know that, but my emotions are what they are and denying them won’t do me any good. My 20 year reunion is next month but honestly I don’t think I have it in me to go. I’m imaging more conversations like the one above and I don’t see that going over so well. The type of conversations I need to have right now can’t be had at a 20 year reunion. They say being a special needs parents has stress hormones similar to soldiers in combat. And I think that’s probably a pretty fair comparison in many ways. Whatever gets thrown our way doesn’t get taken lying down. If we aren’t fighting for something we are preparing for a fight for something coming up. There are SO SO SO many obstacles thrown at us daily. From trying to find a parking space, trying to educate the kid who asks “what’s wrong with him?” to Hudson’s face, to having a heart-wrenching conversation with your 10 year old about how unfair she feels it is that Hudson has to be like this and she wants to know why. I don’t know why baby girl. But he also brings us so much joy doesn’t he? He’s taught us all so many lessons. Most importantly about unconditional love.
The “Watch” Kid
I know it’s time for an update but every time I try to think about what to write I’m literally overwhelmed with thoughts. Should I tell you that he’s been practicing with a loaner power chair and how amazing he’s doing with it? How many different things he had to learn in order to maneuver it? Shall I tell you what a game-changer it’s been in terms of his social interaction and level of participation out in the world? Shall I tell you how it makes my life easier but also more difficult? Difficult because the world isn’t built for power chairs. MOST handicap parking spots don’t have 8 feet of clearance on one side or those spots are taken. Should I tell you how I parked in a spot and put out my orange cones I carry in the back of the car and someone moved them so I couldn’t load him in the car? Shall I tell you how I cursed under my breath and said to my self “Why does everything have to be so @#$#$@# hard!!!” I just want to take my kids into the store. Shall I tell you that he started adaptive swim lessons and how amazing the Y has been? Shall I also tell you how ridiculous the family changing rooms are that were supposed to be designed with the help of a physical therapist but are literally unsafe for a 7 year old in a wheelchair? Shall I tell you how I tried sitting him the bench and propping him up with my knee so I could give him a shower but he was so slippery that I was worried he’d fall. Shall I tell you how I cursed under my breath “Why does everything have to be so #%#@$%#@ hard!!” I just want to give my kid a shower!! Shall I tell you how we almost didn’t go back until another family showed us where the changing table was for special needs kids? Shall I tell you how these don’t exist in any bathrooms anywhere we go so it’s impossible to change his diaper outside of the home so I have to change him in the van?
Shall I tell you how I love this child fiercely and how happy his sweet smile makes me? Or shall I tell you how difficult it’s become to do simple things like putting his pants on and I truly wonder how I’ll care for him as he gets bigger and bigger. Shall I tell you how I’ve started thinking about the future and wondering how I can plan to take care of myself and my health because I’m going to be a caregiver for the rest of my life. How terrifying it would be to have someone else care for him so I have to stay healthy for as long as possible? Can I tell you what a big responsibility that is. Shall I tell you how we came in for a routine EEG yesterday and that he had two grand mals? It was his first seizure in 4 months. Should I tell you how upset he was when they put the leads on him or poked him in the arm to draw blood and how he cried. Shall I tell you how I often have to help the nurses because I’m worried they are going to pull on his arm too hard and hurt him and that I feel more comfortable being the one to hold him still so I do? Do I tell you how I do it stone-faced because crying isn’t going to make this better for anybody? Or, shall I tell you how he went to a power soccer clinic this weekend and how amazing he did?
Shall I tell you how proud of him I was and how much he was laughing chasing after the ball? Can I tell you about all the many reasons that experience was so important for him to have? Shall I also tell you how I’ve realized he’s the “watch kid” at school? That when I brought his power chair to school for him one day to use at recess he went straight to kickball. The kids said “he can watch” – and so he did. And so I said “No, I think he wants to play – can he have a turn?” So he drove himself up to home plate. I turned up his speed to the highest speed possible and then his para kicked the ball. He hauled ass straight for third base. All the kids were screaming “wrong way!! wrong way!!” They all ran after him and alongside him and showed him how to run from first base to second to third to home. When he got to home plate they all screamed “Yeay!!” Shall I tell you how happy that made me and how my heart almost burst?? Shall I tell you how I WISH I had a video so I could watch it over and over again? Shall I tell you how I’ve come to the realization this doesn’t happen enough in his current setup at school and how I’ve been having multiple conversations with the special needs director about inclusion. Can I tell you how I’d like his whole life to be like that kickball moment and that’s what I’d like to work towards with at his school but that it’s going to take EVERYONE’s support from the paras, to teachers, to students, to other parents. So might I ask you all to model inclusion as well? Might I ask you bend down and say “Hi Hudson” and even give him a fist bump. Might you encourage your children to ask questions about Hudson or to ask me? Let’s have these conversations openly and honestly as if we were discussing the color of his hair. Please don’t rush your children along in hushed tones when they ask why he’s in a wheelchair. Don’t think I can’t hear you. Don’t think your child isn’t turning around the entire walk to the car because they are curious. Don’t think it doesn’t make his big sister upset every time it happens. Just stop. Turn around and ask your child if they’d like to say “Hi.” Model inclusion please – it’s going to take all of us to make this world a better place for Hudson. And if you get the chance to support accessible restrooms do it! Please! We aren’t alone in this – there are many many families like ours who you’d be helping make life just a little easier. To learn more please visit: http://universalchangingplaces.com/
This diet is intense. It’s absolutely worth it but it’s a lot of work and there are a lot of changes we’ve had to make. He’s still on a blended diet but his food has to be precisely measured on a gram scale. No more just grabbing a whole banana and throwing it in the blender. Now he can have 40 grams of banana which is about 1/4 of a banana. There are about 15 ingredients in his food and each has to be measured, then scraped out of it’s container. It’s a LOT of scraping. If you ever need a recommendation on a spatula you know who to talk to! Ketogenic diets are usually discussed about in terms of their ratios. Hudson is on a 2:1 ratio. That means for every 2 grams fat he can have one gram of carbohydrates or protein. That’s considered a lower ratio. Many kids are on 3:1 or 4:1 ratios. The lower ratio means he can eat more fruits and vegetables. What is he eating? A large part of his diet consists of Safflower oil, which is pure fat. He also gets avocados, coconut milk, protein powder, miso, hemp milk, and then a few different fruits and vegetables each day.
Anything that gets put on Hudsons skin also has to be carb free and most products have carbs. The website for the Charlie Foundation has a list of all the products he can use. Using the wrong lotion or soap could throw off his ratio and cause him to have a seizure. The other change is all his meds had to change to glucose and carb free pill form. He also has to wear gloves at school when he plays with play-doh because again play-doh has carbs and it could be enough to cause a seizure. We also check the ketone levels in his urine every other day to ensure he’s maintaining a high ketosis level.
It’s all worth it though. He’s gained 3lbs and it’s helping!! We noticed a difference within a few days. He slept really long those first few days probably catching up on sleep. He doesn’t have large bags under his eyes from seizing all night long. He’s been more vocal, more energetic and it seems he’s getting stronger. The staff at Swedish was impressed with how well he responded even in such a short time!
He did have three grand mals in one week but we know what caused them. One was after giving him Tylenol PM, which we didn’t know can lower the seizure threshold. The other two were because of a medication snafu. Overall the grand mals have definitely improved, if not stopped!!!! That’s check one. Check two was that clinically, he appears better. Check three was an EEG to see if the ESES at night has improved. Hudson has been at Swedish the last two days hooked up to an EEG. We were hopeful for good news based on how he’s been acting. However this morning we learned that his EEG still looks pretty bad. It’s bad enough that his neurologist was concerned it could cause cognitive decline. He has electrical activity 70% of the night. We left the hospital this afternoon with a plan to increase the ratio slowly from 2:1 to 3:1. Not the news we were hoping for, but that’s not unexpected as we were told it might take up to a year to dial this in.
Truth be told though, worrying about cognitive decline isn’t a bad downgrade from worrying about very long lasting grand mals that don’t respond to rescue meds. Before I went to bed I used to wonder if tonight would be the night we’d have to call 911 again. What was our plan if I had to go with him to the ER?? And if he has a grand mal please be one that we could at least stop. I am scared to death of him having one that we can’t stop and him end up in the ICU in a medically induced coma or worse. I feel like that was the trajectory he was on. Since a few weeks into the diet I’ve been able to ramp that anxiety down a bit to now just worrying about cognitive decline. And that is a downgrade I’d take any day!!
The Night Before
Tonight we are preparing for a four day hospital stay. Hudson’s seizures are uncontrolled, aka intractable. We’ve already tried 4 medications. I’ve been told the likelihood of them being controlled by medications at this point is very low. He is having a grand mal seizure about once per week. This week he had two and he had his first partial seizure at school. He also has something called ESES which means he goes into status epilepticus at night. He has brain activity about once per second. He’s not getting restful sleep so he’s tired all the time. His Emfit seizure mat is the only reason we know he’s having a grand mal – it causes Scott and I’s hearts to leap into our chest every time it goes off, but it’s also probably saved his life.
Hudson and I will be at Swedish where they will start him on the Ketogenic diet. They discovered in the 1920s that starvation for 10-20 days could actually reduce or eliminate seizures. Since that’s a horrible thing to put anyone through, shortly after they discovered that feeding patients high levels of fats and very minimal amounts of carbohydrates and protein mimicked starvation in the body, causing the body to go into a state of ketosis. The diet must be strictly maintained. His food will have to be precisely measured with a gram scale. I was told even one of his seizure medications has too much sugar in it and we’ll have to get a pill form that we’ll have to crush. Tonight I made his last batch of homemade juice from beets, oranges, carrots and sweet potatoes. I hate making that juice! It’s so time-consuming and such a mess to clean up. But as I made the last batch I was surprisingly sad!! There was a lot of love and work in putting together his blended diet because we started it when the GI doctors didn’t really support blended diets and it is SO healthy!! I always felt good knowing he was the healthiest eater in the house. This new diet is not going to be healthy. In fact it carries many risks and it requires him to have blood draws every 3 months.
Thankfully during our stay, he won’t be hooked up to any EEG leads so we should be able to leave our room. He’s not being put under, he’s not having any surgery and there’s no recovery to worry about. The week will be spent creating his new diet by slowly increasing his ratio of fats under hospital instruction. His blood will be drawn and the diet tweaked to make sure the levels of ketosis are sufficient. I will also be trained on everything. So why am I so apprehensive? Because there’s a 50% chance this won’t work. Having the Ketogenic diet in our back pocket was always a fail safe. If this doesn’t work then what? Continue to have my heart torn out of my chest when he comes out of a seizure and he looks at us between tears and we don’t know if he’s crying from pain or because he’s scared?? I can’t. He can’t. None of us can. I’m apprehensive because it feels like we’re playing our last real hand here. I’m terrified of this not working. I’m trying to focus on the fact that he has a 10% chance of his epilepsy resolving, but apparently my subconscious is subverting all attempts by making me dread this hospital stay more than any other we’ve ever done. The consequences of this not being successful seem huge.
PLEASE let this be successful!!
I’m just Sand.
Sometimes I feel untethered, like there’s nothing to hold onto. Nothing to keep me steady. I’m just grains of sand on the beach. Every day the waves try to pound me down. Sometimes I’m strong but sometimes I shift and slide with the waves. Sometimes there are storms and sometimes those are hurricanes and I’m left just a little more damaged than I was before. I’d like to say I’m a better person because of the storms I’ve weathered. But when your in the middle of it it sure doesn’t feel that way. I had one of those moments recently. I was on vacation. What should be a relaxing family experience was absolutely exhausting. Hudson had been having grand mal after grand mal and we were trying to get his seizures under control – during our vacation. We decided not to let these seizures steal anymore from us so we made memories. But Hudson struggled and so I struggled. He wasn’t holding his head up. He wasn’t smiling or laughing. I saw him but couldn’t SEE him when I looked in his eyes. I felt like the seizures were literally stealing pieces of him and I couldn’t find him anymore. It was like the ocean literally pulled him underwater, tossed him about and I couldn’t find him. One morning I had a panic attack. I couldn’t breathe and had to lay on the bathroom floor. I cried and cried until I had nothing left to cry. I love Hudson so completely and fiercely so that the pain I suffer when he’s suffering is immense. Monolithic. This gig is really really hard sometimes.
Since vacation we’ve had some good progress with CBD oil but have also learned he has something called ESES which means he goes into status epilepticus at night. We also learned that because his grand mals last so long and he’s now resistant to rescue meds, he’s at greater risk of death. With ESES he’s at risk of developmental regression. He’s failed four seizure meds. Our next steps is the Ketogenic diet program. It’s hurricane season here.
More often though, I find myself shifting. When a big waves pounds down upon me I adjust by changing expectations, changing filters or changing perspective. When I found out this year that Hudson’s only involvement with his General Education peers was going to be a half hour in the morning, lunch, recess and specialist I was really disappointed. It wasn’t what I wanted for him. I wanted him to have a typical classroom experience, not hidden away in a private room. It felt like another blow. But I shift. I shift for the benefit of everyone. “At least they have the ability to give him the level of support he needs.” Or, “He’s going to be fine and this gives him the best chance at being his best self.” Or “He’s lucky to have this option.” I shift often. I shift at birthday parties when he gets left behind while the other kids run and play. I shift when he doesn’t get included in the little secrets they tell each other. And the thing is all this shifting is exhausting. Sometimes I try to prepare for where the waves might push me next but I can’t. I’m not in control of any of this, so I surrender to the waves and try my best to hold onto something. When I say I’m tired it’s not tired like you think it’s tired. It’s not just tired from not being able to sleep at night. The mental and emotional toll these waves take on a daily basis is exhausting. I have to stay on this beach so I have to play this game with myself. If I don’t stay on this beach I’ll get drug under by the ocean waves and it will be dark. Very dark. I have to stay on the beach where the light is. So I shift, I slide and I remain strong.
My only fear in sharing this with you is I don’t want you to get the wrong idea. The thing is I’m on a beach!! It’s absolutely gorgeous here!! I’m surrounded by beauty. You can’t separate the hard from the beautiful. They are co-dependent. There’s nothing more I like to do than listen to the waves of Hudson’s laughter or feel the warmth of his love every day. It’s an absolute blessing and I’m so grateful for all of it. It’s hard because I LOVE this beach SO SO SO much!!
The Becky Barbie Parody
I recently read an article about Becky, Barbies friend who uses a wheelchair. Becky, unfortunately, was discontinued and when you find out why you might think it’s slightly funny, but also a little depressing. The full article is here: https://www.pri.org/stories/2017-04-09/becky-barbies-wheelchair-bound-friend-was-discontinued-heres-why. If you don’t want to read it I’ll paraphrase. As it turns out, Becky’s wheelchair didn’t fit in the dreamhouse. It couldn’t even fit in the elevator. The only place Becky could go was the kitchen. The article quotes “In the end, it was too complicated to redesign Barbie world to fit Becky.” So what happened? They pulled Becky off the shelves. We’re talking about a plastic doll house, but it’s actually a parody to real life. The article also quotes “it speaks volumes about the way we think about disability . . . we talk about “fixing disability” instead of “fixing society”.
Here’s the thing – ADA doesn’t even come close to actually making things available to
Hudson. They may be “accessible,” as in he can fit through the door, but usually he can’t participate or interact with the things inside. He can’t reach things in the touch tank, he can’t see the animals at the zoo because the glass doesn’t come down low enough, or he can’t play at the train table because it’s too high or too low. The solution can’t be to just continue focus on “fixing him” so we can get rid of the wheelchair. There are over 3 million wheelchair users in the US alone. You can’t get rid of the wheelchair user, we have to do more. So we as his parents make the world available to him by unbuckling him, lifting him up, carrying him, modifying as appropriate, etc. Most parents with kids with Cerebral Palsy will facilitate all these same things so their kiddos can experience life, often at expense of their own bodies. And there’s no breaks and no help. When we’ve looked into having him at a summer camp they all say “yes of course he can come” but . . . “you have to stay with him the entire time.” Guess what? I’ll be with Hudson 100% of the time this summer. He relies on me for everything and honestly I’m going to need a break sometimes this summer. I love being with him and am sad when he’s away, but being a caregiver can be exhausting. Not to mention I’d be paying to attend summer camp with him for a week. That’s not even a possibility if you have other kids and honestly it’s not something I’d pay money to do. So he doesn’t participate. Listen – I’m not complaining. The point I’m trying to make is this. . . caregiving is hard because the world isn’t setup for Hudson, just like the dreamhouse isn’t setup for Becky. I don’t want to change him so he fits into the mold society is setup for. I don’t want to wait until he can walk or stand or whatever to participate in these things. I DO want to change society so it’s truly as available to him as to every other child. I am passionate about him being able to fully participate in it. That’s why I really want him to be able to go to summer camp this summer. And not a special needs summer camp. I want him to go with his sister (who can help keep an eye out on him). And I want him to be with both neurotypical and non neurotypical kids. I want the staff to get creative and actually include him without me having to facilitate everything.
So, you can imagine my joy at finding out that someone at the Morgan Family YMCA, a special education teacher, has the passion to pilot an inclusive summer camp program. She bird dogged it through their risk management department and it took a month but we finally got permission for Hudson to attend camp!! And no it’s not a camp where they’ll let him just “attend” but they will modify all the activities to make it fully available to him. For example, when they play tag they told me they’d give him a pool noodle so he could reach out and touch the other kids. We just met with her yesterday to come up with a full plan of how they’ll meet his needs. I’m really really happy for him. He cried when we had to leave and that was just after the tour. If this goes well they are going to push for funding to make all their camps inclusive for kids with disabilities. This feels like another step in the right direction – towards a world I’d like to see some day. The wheelchairs are here to stay so let’s focus instead on making people with disabilities truly part of the community. And let’s give some support to special needs parents who can’t just drop their kids off for parents night out or who can’t just get a babysitter to watch their kids for a date night.
So how can you help? Encourage your kids to be creative and find ways to modify activities in ways that include kids with special needs. Encourage them to ask questions about kids with disabilities. Teach them to think about others needs early on so that when they grow up and become architects, interior designers, builders, owners of coffee shops, teachers, etc. they can help create spaces for everybody in the community. That’s how we are going to change things. Just like this woman at the YMCA who met a boy in elementary school with a disability and decided then she was going to grow up and help kids like him. Your children and grandchildren are going to make this vision possible.
Also, it’s CMV Awareness month so if you haven’t already please educate yourself. https://www.nationalcmv.org/default.aspx