There’s a saying in medicine: “When you hear hoofbeats, think horses, not zebras.” In other words, the most common answer is usually the correct one. This is good advice when googling your symptoms as well.
But what do you do when it is a zebra?
The last day of February each year is National Rare Disease Day. (Thus encompassing leap day — a rare date for a rare day.) It’s a day to bring together people with rare diseases.
A disease is considered rare when it affects fewer than 1 in 2,000 people. That can be pretty isolating. It means that you may be the only person anyone’s ever heard of with a condition. It may mean there’s not a doctor in your state or in your town familiar with your disease. It may mean treatments that work for others won’t work for you. (But that doesn’t mean you won’t regularly be offered miracle cures by strangers who know nothing about your disease.)
There are 300 million people worldwide with rare diseases. Alone we are rare. Together we are many.
Patrick is rare. Gastroschisis affects 1 in just under 2,000 babies each year. However, Patrick experienced a complication so rare that I can’t find statistics about it. His bowel died, leaving him with Short Gut Syndrome. Short Gut itself only affects 30 of every million people. Only just about 100 intestine transplants are performed each year. Fewer than that are multivisceral. By the numbers, he’s rare.
I’ve been feeling his uniqueness in other ways this month. Especially at school.
Patrick attends a very unique school, one designed for children with special needs, particularly those with autism. Although Patrick checks all the boxes for an autism and ADHD diagnosis, his diagnosis is not as simple as that. Patrick’s intellectual, memory, and sensory issues come largely from a brain injury he sustained during a cardiac arrest caused by a central line infection when he was a baby. That means that, while many of the things that help autistics help him, there are differences in the help he needs. Also, although he has anxiety, his anxiety isn’t founded in ordinary fears, but in the complex medical trauma that he experienced as a young child.
There is a reason we don’t domesticate zebras. They are in many ways quite like horses. Zebras eat almost the same things as horses. (Almost, but not exactly.) They behave in many of the same ways. But zebras are not the same as horses. And the differences are more than just the stripes.
Zebras are smaller but are very strong. They are not strong in the same ways that horses are; their bodies are not made for riders or for carrying burdens. They don’t run as fast as horses. They have evolved to survive as prey. They are skittish and easily startled, quick and agile, known for a bite and a strong kick. Zebras can be sassy, stubborn, smart, and sensitive.
Zebra keepers know that they need to spend extra time building trust. These animals don’t trust easily. Handlers need to be consistent and gentle. They make sure to feed their zebra personally so that it sees where the food comes from and develops trust. Patient handlers are rewarded with an extremely faithful bond.
But you won’t get there if you treat your zebra like a horse – or even like its closer cousin the donkey.
And this is where my frustration lies this month. I’ve heard teachers say that January and February are when most of the teaching happens in a school year. I don’t know if that’s the reason, but every year in January and February, it seems, we end up talking to teachers about the same thing. Patrick falls behind in these months. And I find myself explaining that he can’t be asked to do the same things as the other students if he’s only offered the same supports they are. His issues with motor skills, memory, spatial reasoning, attention, vision, and math require more.
So we end up talking about IEP accommodations, whether there is sufficient staffing, whether he is too dependent, what is attention seeking or escape, whether staff understands his needs and accommodations, how to help them understand, whether he should have to ask for accommodation so receive them. And all of that leads to the question of whether or not he belongs in the classes he is in. Every few years, this one included, I get a bonus IEP team meeting out of it.
This year is better than some because I know that his teachers actually care and are genuinely trying to find ways to help. At least this year I’m not having to start by trying to convince them that his needs are real. But there is a reason people don’t ride zebras. And there is a reason we are always talking about where we can make compromises.
Next year, Patrick moves into 9th grade. For him, that means moving into high school. And that has opened a whole new set of issues. Demands will be higher. Classes will be harder. It’s getting more and more painful to keep Patrick in grade-level classes without grade-level skills. Because classes are for credit, there are limits to modifications. And he likely will never have the executive skills and memory to handle it alone. The question is if we can find a way to give him enough help to handle it at all. And if doing so is worth it for what he’d get out of it.
So now we are talking about whether or not he should pursue a diploma. Whether he would benefit from some time in a functional skills class. What he will do after high school and what, if any classes, they offer that can help prepare him. And although I’ve known for a long time that Patrick wouldn’t likely get a traditional diploma, or go to college, or have many job options, my heart is having a hard time catching up with my head.
Patrick is a normal teenager in so many ways. He loves his friends. He’s girl crazy. He listens to his music too loud and wastes hours on YouTube. He’s obsessed with cars and can’t wait to own his own. At school with his handful of friends is the one place where I think he truly feels like he belongs and is accepted as himself. His advisory teacher is a keeper in both senses of the word.
Except that, even with a sense of belonging, Patrick doesn’t understand what’s going on a lot of the time and sometimes sits lost and without help for an entire class period. And the question is whether that’s actual belonging. (For Patrick, maybe?)
So here’s to Rare Disease Day, a day dedicated to belonging, even when you are rare.
They say that zebra’s stripes make it harder for a predator to pick an individual out. When many zebras stand together, their uniqueness combined protects the group.
That’s not actually true. Recent research shows the stripes protect against tsetse flies, who are so confused by the pattern that they abandon their attack and fly away. That’s probably more representative of how things work with rare disease zebras. We confuse everyone so much that they flee.
But I like the image of the herd of zebras standing together. So I’m going to stick with it.
I began writing this post last March. And then a pandemic happened and circumstances changed and I abandoned it. But I think the discussion is just as relevant now, if not more so. So I’m going to attempt to dust it off and finish writing it. Here’s how I began…
There is a fairly well-known image that is used in discussions about equality. The picture shows 3 children of different heights trying to watch a baseball game over a fence. In the first frame, each child has a crate to stand on, but only the two tallest children can see over the fence. This frame is labelled “Equality.” In the second frame, the tallest child has given his crate to the shortest child. Now all the children can see. The image is labeled “Equity.”
Over the years the image has circulated, the quality of the graphics, the labels on the message, the symbols have been debated, and the interpretations have been varied. Below is a common one used in education and discussions. The 3rd frame is often labeled “inclusion” and represents the systemic barriers being removed.
It seems that I have been having a LOT of conversations lately about how to include Patrick. Since the start of the (2019-2020) year, we’ve had a lot of new transitions. And that means we’re trying to figure out how to fit into a lot of new settings.
The biggest one has been over the subject of P.E.
Here’s what happened. One of my best friends at Patrick’s school was also working part-time as the elementary school P.E. paraprofessional. (a.k.a non-credentialed teacher.)
One day, she called me up FUMING about what was going on at the school. Apparently, they were having trouble with some students choosing not to participate during P.E. and other “specials” classes. The principal had told the teachers that they needed to give a grade for the class, and since it was a pass/fail class, they were looking at giving failing grades to students who refused to participate.
Enter Patrick. Patrick has a combination of disabilities that prevent him from participating fully in a regular P.E. class. He has cerebral palsy that makes it difficult to control the muscles, particularly those in his legs, especially when running. He has visual tracking problems from his brain injury that make it very difficult for him to follow a ball. He has trouble with motor planning, meaning the ability to think through the steps of a motor process that, for others, wouldn’t be consciously broken down. He has serious ADHD that make it hard for him to focus in a chaotic environment. He has working memory impairments, or in other words, problems with his short term memory that mean he can suddenly forget what he is supposed to be doing. And, to top it off, his transplant puts him at exceptional risk of injury from a fall or a blow to the abdomen and he is required to be excluded from contact sports. (Dodgeball, anyone?)
Patrick’s IEP provides for “adaptive P.E. services,” meaning that instead of being required to pass a regular P.E. class, he gets to work with a special P.E. teacher who adapts P.E. to his abilities and works on specific goals.
The problem is this.. Patrick is in a mainstream classroom. And the schedule of that classroom includes the class going to P.E. while the teacher used that time as prep time in the class. And, even though I knew he couldn’t really play, I didn’t see much harm in allowing him to go to P.E. because that’s what his classmates were doing.
But apparently, what was happening was that Patrick, unable to do what the rest of his class was doing, would try to visit with the adults. His para would tell him he needed to go play, and because he couldn’t, he wouldn’t. He’d just sit on the side and patiently watch.
So, when they started talking about who should receive a failing grade for not participating, Patrick’s name made the list.
My friend was furious because she knew this was wrong. Let’s be honest. No one would have been talking about failing a kid in a wheelchair for not doing P.E. We’d had multiple conversations about what he should and should not be doing as she’d made her lesson plans. So she went to an administrator, who pulled the IEP, marched it into the principal’s office, and demanded that he intervene.
Patrick didn’t fail P.E. But it made some of the staff who work with him angry about how “unfair” that was to the other students who saw him not playing.
But it made me aware that I had not done enough in setting clear expectations for P.E. with the school. Enter advocate mom. I called for a special IEP meeting to get clear adaptations written.
Now, Patrick attends an exceptional school. So when I went into the meeting saying that I needed them to make a plan specifically to allow Patrick to be excluded from the P.E. requirement, they insisted instead that they needed to write a plan for him to be included instead.
Plan A. that they wrote didn’t work. Plan A was to require the paras to lead alternative activity for the students (yes, multiple) who could not do the regular P.E. activity and were sitting out. The argued that they kids who were choosing not to participate would choose the easier activity instead. (In hindsight, I disagree with this opinion. Why not allow mainstream students to sometimes do adapted activities? That’s inclusive, right?)
On to Plan B. My friend, because she knew us personally and cared enough to see the individual, started go over her lesson plans with me at our weekly breakfasts. We’d decide what Patrick could do that was related to her plan. Sometimes, that was giving him a special role in a game. (Basket holder, line judge, etc.) Other times that was giving him a simplified version of the activity. (While the other kids shoot hoops, Patrick will practice passing with the help of an adult.) I dropped in on class unannounced and helped to model what this would be like for the staff that was there.
Plan B is what worked.
And it got me thinking a lot more about inclusion.
In children’s Sunday School, we run through scenarios regularly about how to Choose the Right. And a common example is “There’s a new kid” or “There’s a kid others don’t like” or “There’s a kid who isn’t good at a game” … anyway.. there’s a kid, and the other kids don’t want to let them play or let them eat lunch with them or whatever. What do you do?
The answer is, you let them play anyway. Right?
But is it inclusion if it stops there? Is it enough to “let them” attend? Was it enough that Patrick was sitting in P.E. on the stage alone? He didn’t mind. He didn’t want to play. If you asked him to get up and do what the other kids were doing, he’d give a polite “nah.” He was fine, right? He was welcome.
But is that inclusion?
Look again at the picture at the top of the page. The short kid is invited to watch the baseball game. He’s even given a box. It’s totally fair.
Or is it? Is it more fair to give him the box the tall kid is standing on? That way at least he can see. But the tall kid doesn’t get a box that way. Isn’t it more fair for every kid to get a box?
The thing is, adaptation isn’t fair. But it’s at least a start.
One of the things I love about distance learning is that I’m in charge of the school day, so Patrick actually gets all of his accommodations. We use a Kindle with OpenDyslexic font for reading. He can use special manipulatives or a calculator or Google Home to help with math. And he’s getting very good at using Google Read and Write and other adaptive technology.
Adaptations level the playing field so that physical limitations don’t get in the way of him reaching his potential. In P.E., adaptations were changes to game rules, simplified activities, or special equipment. Patrick’s school spends a lot of time teaching him to advocate for his accommodations. One way we as a society can be more inclusive would be to not push back against allowing these when they are justified.
But inclusion CAN be more than that. Because true inclusion sometimes means being willing to change the rules for everyone.
Think, for example, of food allergies. If someone has a life-threatening food allergy, adaptation would say that you allow that person to bring their own food to lunch, instead of eating what everyone else is eating. But if others at the table are eating the allergen, inviting and allowing differences is still not enough. Allergens can be spread by touch, and so we have nut-free classrooms and even nut-free schools. That’s the only way, literally, than a child can safely come to the table.
If done right, inclusion benefits more than just the person with the most apparent need. But it takes some creativity.
Here’s an example. I taught a Sunday school class for 3 year olds. We had one student who every week hid under the table. We had another student who always wanted to remove her shoes. Yes, we could have said that the rules required that everyone sit on their chairs and wear their shoes. And everyone would have learned the rules. But a couple would have spent so much energy on that lesson that there’d have been no time to talk about Christ. So what did we do? We put away the chairs and we sat on the floor. Everyone was allowed to have their shoes off if they wanted. And kids under the table could see the pictures. The only rule was that they had to allow other kids to have a turn under the table, too. Because ALL 3 year olds are sensory creatures and the adaptation that one needed benefited them all.
But inclusion also means being willing to let go of traditional ways of doing things sometimes. And I think that’s the hardest part.
Sometimes, when I get to speak to a group of Patrick’s peers about inclusion, I read them the book “Can I play too?” by “Mo Willems.” Here’s a read along if you don’t know the story:
I like this story because it really captures in a lot of ways what it’s like to try to play when you have a disability or other difference. 1) We don’t always know how to make it work when we start trying to play. 2) A lot of times, what we try fails. 3) After enough failures, the person with the difference will decide they are causing too much trouble and withdraw. 4) Some of the best solutions are the ones people might never have considered.
This is why I love adaptive sports. Because they remove the primary obstacle to inclusion: winning. They also toss out several rules. I remember attending one adaptive baseball game where a player wanted a hit. So they threw him 27 pitches. 27 misses, and then he knocked it out of the park!! And the crowd went wild as he ran his home run.
This is the picture where the wooden fence has been replaced by a chain link. Where there isn’t an obstacle that gives some an advantage over others. This is what people are referring to when they talk about systemic problems.
For Patrick, being graded on participation a typical P.E. class was a systemic problem.
2020 made us acutely aware of so many other systemic problems. The inequalities revealed in our healthcare system, in our justice system, and so many more all came to the surface in violent and devastating ways. And I think a lot of us feel absolutely helpless in the face of systems that we don’t have any idea how to change.
Because, let’s be honest. Inclusion isn’t always possible. Not all sports can be adaptive. Not all diets can be nut-free. You can’t just say you want a system with more social programs when those programs don’t yet exist. We need to be challenged by school or sports to grow, and that means pushing people to their limits.
You also can’t force inclusion. Another thing that 2020 has shown us is that mandates are met with opposition. That opposition comes because broad mandates create new systemic problems that make people feel overlooked.
The thing is that MOST of us really are trying our best. Most of us do care about doing what is right. And what most of us crave most deeply is to feel seen and valued. Especially for our best efforts, even when they are inadequate.
Columnist David Brooks put it this way:
“Many of our society’s great problems flow from people not feeling seen and known.”
David Brooks, “Finding the Road to Character,” October 2019
He went on to say that a trait we all have to get better at is “the trait of seeing each other deeply and being deeply seen.”
Inclusion doesn’t happen by pulling one group out of the shadows and pushing another into it. This is one of the great risks of today’s cancel culture.
It may be an unpopular idea, but I’m not sure that systems CAN be fixed from the top down. Instead, I think that if we want to see our society change in a significant way, it’s going to need to be something that happens on a much more intimate level.
Here’s another great quote:
I believe the change we seek in ourselves and in he groups we belong to will come less by activism and more by actively trying every day to understand one another.
Sharon Eubank, “By Union of Feeling We Obtain Power with God”, October 2020
To be honest, when large-scale changes have been made to try to include Patrick, the result has almost always been awkwardness that made us ALL pull back. Plan A where they ran a whole separate P.E. section for him would have made everyone feel uncomfortable.
But Plan B worked precisely because it was personal, thoughtful, and simple.
We simply need to start seeing each other.
I think we also need to extend each other more grace. If mortality is a school, then we are all going to make mistakes as we learn. We will all sometimes be on the giving side of some hurts. We would benefit from being as quick to grant forgiveness as we are eager to receive it.
On Valentine’s Day this year, I knew that traditional Valentine’s parties were going to leave out every student who was learning from home. As PTO president, I had some power to try to make things better. So, in addition to providing usual support for valentine’s parties, I spent several hours creating virtual valentine’s exchanges, online games and other activities that could be played with the students both in class and those connecting digitally from home.
Patrick’s sweet teacher went out of her way to buy craft supplies so that the class could make each other valentines. And she instructed the class to remember the kids at home and make them for them, too.
But that left home learners entirely on the outside. they were remembered, but not included. And, I’ll admit, after all my effort, I was hurt to still be literally on the outside looking in.
Some attempts at inclusion are a BIG miss.
But that doesn’t change the fact that he has a teacher who very truly cares about him. Who stays late sometimes just to visit with him after the other students have gone. Carrying that hurt would only hurt me. The slight wasn’t intentional.
Where am I going with all this? I’m not sure I exactly know.
I do hope, though, that if I make our experience seen that it will help as we all try to do better at seeing each other. We have too much anonymity in our society. It’s easy to get caught up in “us” and “them” when you speak generally.
But the more you get to know people as individuals, the more natural it is to try to love and take care of each other. What is that quote? “people are hard to hate close up. Move in.”
In other words, we do start with that sunday school answer. We notice the people sitting on the sidelines and we invite them. But it goes a bit deeper than just inviting. We get to know them.
And then we consider each other’s needs. And we make ourselves open to different ways of doing things. We try. If we fail, we forgive and we try again.
Today was insane. Brian and I woke up before Patrick, a rare occasion, and were lying in bed talking (we’ve missed each other) when the power went out. And then, a few minutes later we heard sirens. And, well, we hoped it wasn’t but we suspected that a car accident had knocked out the power. We live in a quiet neighborhood, but it’s near some busy streets. And this morning, somehow a traffic accident took down two power poles. Across the street form each other. The power was out all day.
Not the smoothest start, but we pushed on. It was a big and busy day and I needed to make the most of it. So, after sending Daddy off to work, Patrick and I got ready to go do a little more shopping. We still needed some things for school to start. And then we hurried home to meet my sister.
i ended up with 3 big things scheduled today. An allergist appointment, a school meeting, and a speech evaluation. My sister Marcy agreed to tag along for the day to help keep Patrick happy while I did the talking that needed to be done. Patrick doesn’t like us to talk about him.
Well, we got to the allergist and went to check in and they couldn’t find the appointment. Finally they looked it up and told me that it wasn’t until the following day. I explained that I had come at the time told to me and that I couldn’t come the next day because Patrick was in school. They tried to find a way to fit us in.. but with other meetings we couldn’t swing it.
I was disappointed because i really want help sorting out these new allergy test results. They revealed new allergies. They also hint that Patrick might be outgrowing his milk allergy. And I don’t know what comes next. But it had to wait for another day.
We went and grabbed lunch and then headed to a park. Patrick was seeming restless. But we sat down to eat only to discover that Arby’s had put cheese on Patrick’s roast beef sandwich. And with no answers from the allergist, I had to pick out the pieces he could eat. Frustrating.
Anyway – Patrick made a friend and the time at the park was fun enough. And then we went off to meet with the school.
I can’t really describe what school meetings for Patrick look like. This one was packed. We had the teacher, OT, PT, principal, nurse, district special education liason, and two other very big district big wigs over special accommodations in the school. Plus Patrick, me and Marcy.
As I mentioned before, I had talked to Patrick’s teacher and nurse the week before. The teacher and I talked at length about medical accommodations. She was very worried because Patrick needs extra supervision at recess, lunch, and especially with the potty and she just doesn’t have enough adults in her classroom to help with that. Especially since they added 5 kids to the class since last I’d heard. I told her I’d been promised extra help and she asked me how far I was willing to go to make that happen. I started writing e-mails that day. And I got promises that the district would send help to the meeting. (Enter the district big wigs.)
When I talked to the nurse, again, when we started talking about medical needs he said that it sounded like we didn’t have enough support. I told him that we had been promised extra help from an aide and I didn’t know how to make that happen. I gave him some names that I had of people who had made decision and promises. And he said he’d make some calls.
Yesterday morning, I got a call from the district nurse who was helping with Patrick’s school transition. She explained to met that, in fact, she had helped request an aide for Patrick and told me the language to use to make sure that one was provided. And she promised to call around and find specifics.
And so today we sat down and i started to go over Patrick’s needs and I brought up the concern that there wasn’t enough support in the classroom… and the district special resources person told the principal that they had 22 extra aide hours per week for Patrick. Her response was a mix of frustration and relief. Glad for the resources but not so much for needing to produce this extra employee for school to start the next morning. I can’t blame her for being upset. I’m upset that it took a meeting when I’ve been asking about it for a month. But I’m also partly to blame for taking so long to choose a school.
We went over medical needs. The nurse was really outspoken and trying his best to help. We talked about where Patrick should sit and lunch. (End of the table with friends with safe lunches next to him.) We decided we needed to set a time to train the classroom staff. Only with school starting, he didn’t think we could fit that in right away. We decided to let Patrick come 10 minutes late to school and miss breakfast. I explained that hands have to be washed with soap and water, not just hand sanitizer which created a fuss about the bathrooms always being out of soap. I offered to provide soap for the classroom. And the district rep jumped in and said I couldn’t do that and promised to remedy the situation.
We talked about potty training. That was one of the teacher’s biggest worries. I don’t blame her. It’s a huge time commitment. Especially with Patrick. I guess there are two kids potty training which makes things even more complicated. Also, the private bathroom I was excited about turns out to be in the school’s “sick room.” I was SO grateful when someone else spoke up and said that wouldn’t work. Not sure that we actually ended up with a resolution, though. They talked about making the school move the sick room. They talked about offering to install a changing table in the bathrooms that are being remodeled, too. We decided to let Patrick wear pull-ups to school while we work it out.
We planned to hold a new IEP meeting in October, once they’ve had a month to get to know Patrick. And we talked about including or re-including some new things at that time like restarting physical therapy and calling in the augmentative team to look at some assistive technology for writing.
And then, after we talked about everything that needs to be done.. the idea was thrown out that Patrick maybe would be better off if he didn’t start school tomorrow. I didn’t know if i was relieved or crushed by that idea. Really, they aren’t ready. Really, I’m not ready. I have felt like I have been only halfway there this year. Not put together. Not giving him time to transition after all the craziness of travel. And so a few more days will let me make his backpack and his lunchbox cute and medical friendly. It will let me train the staff. It will let them try to hire help. It might give me time to figure out this new allergy questions. And to get Patrick back into a routine with eating and potty. It will let Patrick and I have a few more days at home to say goodbye to each other. And to really get him ready for the idea of school.
But I’m kind of sad. It feels kind of like when you’re on a road trip and you finally make it to a rest stop only to find out that the bathroom is closed and you’re gonna have to cross the street to the gas station. It’s only a little further, but it’s the longest, hardest part of the wait. I look around and see so many things that have just been waiting for me to get to them. And they will need to keep waiting.
I feel really bad for Patrick, too. On Sunday, all the other kids will be talking about starting school. And he will have been left a home. Again. He will miss the craziness of the first day of school. But he’ll have missed the specialness of it, too. He’ll be the different kid. The one who came late. The new kid. Again.
They asked if I’d like to come teach the kids about his allergies and immune suppression. I told them about the presentation I gave last year at the start of kindergarten. And I could see they liked the idea. So on Friday afternoon, I’ll be going in to introduce Patrick to his class. And then afterwards, we’ll meet and go over a behavior plan and schedule.
And then Monday morning, he’ll start school. I’ll stay and help the nurse train the teachers. And I’ll maybe stay to help a little more than that if they don’t have another aide by then.
And I know it’ll be good.
I think I’m just a little bit mourning normal. I want back to school to be exciting and happy. This just feels complicated.
But maybe having a few more days to regroup will accomplish that. And meanwhile, we have one last week with the girl who’s been doing Patrick’s respite. And we have a few sweet days where all the kids are in school and we might be able to sneak off and do something awesome without a crowd.
I feel like a huge weight has been taken off of my chest. Although we have always been very blessed with a caring and cooperative IEP time, hammering out an IEP that meets Patrick’s many needs is no small feat. And this year, with everyone on the IEP team, except the classroom teacher, being brand new to us, I was especially worried.
So I got dressed in my best “I’m competent” clothes, a change from my usual “I’m a special needs mom and you’re lucky I am dressed” wardrobe. I even put on makeup and did my hair. I packed a bag of toys for Patrick and brought along a stack of supporting documents for me. I stopped at the store and picked up some new puzzles for Patrick, even. Then went to Dunkin’ Donuts for goodies since the meeting was at lunch time and I wondered how at least the classroom teacher was going to manage to eat.
Then, as I was sitting waiting for Brian to meet me, I noticed that I’d mixed up my brand new jeans with an old pair of jeans with a hole in the crotch that I’d worn gardening last week. And I crossed my legs and shook it off because I couldn’t let that throw me today.
It seemed like this year’s IEP was all the more important than years past. Before, we were just making goals to help move forward his academic and developmental progress. This time we were dealing with new and worsening behavior problems as Patrick has become aware of his limitations. He wants with all his heart to fit in and make friends, and he just doesn’t have the skills and savvy to do it right. And so he’s taken to hitting, kicking, and pulling hair when he feels frustrated instead.
I had a feeling stress was building. But, I’ll be honest, I’ve been surprised and quite devastated that things got this hard this fast.
As the school year ended last year, I knew that impulsivity was getting to be more of a problem the more Patrick could do things for himself, but still couldn’t be independent. I asked his neurologist for help and he referred me to an amazing program designed to help children with developmental delays and behavioral issues.
But when I started down that path, insurance informed me that the program was through a non-contracted provider. They are a non-profit and we could maybe have made things work, but it was going to cost us more out of pocket than I expected. And, to make matters worse, their wait list was months long… all summer long in fact… just to get an evaluation.
My sweet insurance case manager felt so bad delivering this news that within a day, she’d called around and found a neuropsychologist who they contracted with who could squeeze Patrick in for some developmental testing. I had to fill out a mountain of paperwork. The questionnaire was over 50 pages long. Plus provide a medical/developmental history. (Another 50 pages at least). Then, Brian and I went in for an interview where we talked about all of the things that concerned us about Patrick’s development and behavior. Then it was Patrick’s turn. 4 hours of alternating standardized testing and play therapy and observation. In the end, we got a 25 page write up describing our child. His strengths. His weaknesses. His learning style.
In the end, Patrick was diagnosed as having many physical and cognitive delays stemming from his brain injury. (No surprise there.) And with ADHD. (Also no surprise, though really nice to give it a name we can work with.) The evaluation also included testing for autism and the doctor and Patrick’s therapists and I had a long drawn out series of conversations in which we discussed the way that Patrick’s brain injury sometimes makes him act like he is autistic (sensory processing disorder, social difficulty, quirky little obsessions).. but in the end decided that that diagnosis would only cloud and confuse things for him as it doesn’t exactly fit.
Armed with new diagnoses and 25 pages about how to help Patrick learn (with very specific examples of areas to teach him in), we supposedly had all the makings of a rockstar IEP.
Hence my anxiety over the past month in trying to get things just right. I’ve been e-mailing and talking to Patrick’s new special education teacher (this is an extra teacher who works with him in a regular classroom). I have felt like the super duper stubborn bad guy with my list of unreasonable demands. I really wondered if they were starting to hate me.
But today’s meeting was yet another IEP success. I feel like Patrick’s got a group of very astute and caring team of people working with him. And, in the end, they found a way to give Patrick just about everything we were asking for for him. In fact, a little bit more, even. Like a motor aid to help him in PE. And picture schedule cards for each type of activity in the class. And a more supportive chair for work table time. The occupational therapist offered to work with him on a sensory diet (meaning physical activities to meet his sensory needs throughout the day), which is virtually unheard of in IEP’s in Utah. And the speech therapist offered to build Patrick social stories with him as the main character on her iPad. And, as icing on the cake, they have a written behavioral plan in place for Patrick and are calling in a psychologist to consult and help Patrick learn to control his temper in class.
Of course, the trick now is finding practical ways to make it all work together.. But it is such a relief to feel like we’ve got our feet pointed in the right direction again.
And a big relief to be done with a crazy month of trying to see all the doctors and all the therapists and gather recommendations and write firm but kind “parent advocate” style e-mails that say what they need to, but then have to be trimmed down because, face it, I’m verbose. It will be a relief to be done rehearsing arguments about the IEP in my head all the time.
At least till next fall. Or maybe spring. Or maybe earlier, if things aren’t going quite as they should.