No such thing as cruise control with school services

I see the same story over and over again: a child who is young — like my boy (5), with a similar high-functioning diagnosis — refused for school services because his disability doesn’t yet affect him “academically” even though it clearly affects the child socially and emotionally.

The school puts their foot down with a refusal of services and in turn creates a different path for a very young and vulnerable yet capable student. This path created can make or break a student’s entire school career, especially if a student is diagnosed with ASD (autism spectrum disorder).

These children build strong associations, and if school is uncomfortable, scary, frustrating, too much, hard, unsafe and unwelcome to them — every single day — I doubt that experience will provide a steady foundation for the future.

For example, the boy was asked not to tic or stim in the classroom — before his teacher knew any better — and he still feels uncomfortable, so he tries to suppress them and that results in meltdowns. That doesn’t make learning easier, as I’m sure you can imagine.

I don’t think I could be any less shocked that the boy’s school used every last minute of the evaluation period allowable — down to the day —  to make a decision about granting him an Individualized Education Plan (IEP). And even though the appointment to cover these evaluations and the school’s decision was so rushed that I couldn’t plan child care for the boy’s little sister, I took it.

I read somewhere that being agreeable and nonconfrontational would serve me more in this circumstance (whomever wrote that has no idea what they are talking about, btw). In retrospect, I say if the situation calls for it get a little emotional and confront the specialists make them convince you. But I digress…

When I see that I am walking into the same scenario I have read about so many times, with my boy and the school’s specialists, I am ready to stand up for him. I put my supermom cape on and head to his school for the IEP meeting.

There are a couple parts of this meeting that immediately don’t make sense to me. Their evaluations match his diagnosis, but their recommendations are polar opposites. Some believe he would benefit most from not having an IEP because he is fully exposed to social skills and transitions all day long in the classroom (yes, yes we’ll cover this), while others believe he could benefit from being fully emerged in the special education program.

I was confronted with this split team, and it totally caught me off guard. I assumed walking in that the team would tell me what they recommend and I would present a case that was probably a more challenging approach (for their budget) but would be a better fit for the boy. So there we sat as I weighed the pros and cons out loud for them.

First, I have to cover this nonsense of the “full exposure to social skills and transitions all day long in the classroom” … they are right, he totally is. He is totally and fully exposed to the completely unpredictable and often confusing social skill set of his fellow kindergarten class all day, all of the time — and that is a major part of the problem!

He doesn’t have the skills to match his peers. Period. He is part of a mainstream classroom full of kids who come from a variety of complex living situations and that is super confusing, too. So if he isn’t taught these skills, he is either going to segregate himself further or interact inappropriately. I don’t foresee either option helping him academically.

They counter saying that they don’t have a group of children that are at the same level of need right now so there isn’t a group for him. The current group is slightly less socially aware than the boy is right now. I ask why he can’t still be instructed and practice his skills with someone slightly less functioning (or more)? Can’t he learn through modelling the behaviors and scripts for his peers too? Won’t he and his group members all benefit from this? Again, I am not the expert…but come on, this seems like super simple stuff!

Second, the team tells me that they think the boy will suffer academically if he is pulled out of class for therapy rather than continuing to receive the therapy outside of school. I try not to laugh/cry/yell because I am so tired of this that I could JUST — and I repeat this scenario back to them — say, “The boy would benefit more academically from missing hours of school receiving outside therapy, than he would staying in school and being pulled from class for 45 mins to receive therapy, Should I repeat it again?”

Do parents really go for these answers, or do they appeal the school’s recommendations? I am maintaining my composure because if I get emotional I won’t be able to think clearly. I take deep breaths and think of  the boy’s face, his round cheeks and bright blue eyes, his forced smile and giggle… I like to pretend in my head that he is coaching me, it’s my favorite way to center myself because it’s silly. It works. It’s not working…

I always hear from other parents who have been in my shoes, the school will fight you, they will tell you anything to make you believe they are looking out for your child, but it’s really a budget meeting. I also always thought, not me and not my kid. It’s obvious from the evaluations, from the doctors, from him that he needs the help. I hope they will see it and they will want what is best for him.

So we continue with the meeting, and I feel like I need a break. The condescending words are piling up. Even hearing from the school psychologist that it sounds like the solution I’m really looking for is a weekly “progress report” that shows the boy is meeting goals on time and not an Individualized Education Plan. Yes. Of course, why didn’t I think of that? Solves everything.

The meeting ends with me getting emotional, which I wanted to avoid. I stammer on about wanting the boy to function more like his peers and something about him getting on a school bus someday. I gather my wits and bravely ask what the school has decided. They unanimously agree that the boy should have an IEP that will include social skills therapy, OT therapy, tailored testing for benchmarks that meets his needs and other accommodations.

I am baffled, relieved and a week later am still sorting this out. What if I didn’t put my foot down? What would they have decided? If there is one thing I have learned on this journey, it’s that there is no such thing as cruise control. The work is never done, and just when you think you have something licked, another curve ball will speed toward you knocking you off your feet.

I am one of the lucky ones because I have a village helping pad the ground so when I fall, it’s never too hard to get back up again. So, thank you, village! We have an IEP being written and the boy is enjoying his new social skills group at school.

Read more from me on my Momma Has Monsters blog.