I pull up to my 6-year-old’s new school. He’ll be starting kindergarten and I called an IEP (Individualized Education Plan) meeting for him. Backing the truck into a spot I feel my anxiety go into overdrive. I’ve been rehearsing in my head what to say, what I think he’ll need, how to accommodate and make a 6 hour day as a kindergartner the best it can be. All my doubts about sending him to public schools overwhelm me. I know he wouldn’t learn from me. He knows better than mom on all topics – or so he thinks. But my heart aches that I’m sending him into the frying pan of public school. I experience some PTSD while scenes from my elementary years flash before my eyes. Thinking I’m playing a game of chase, but it turned out they didn’t want to be caught because I’m the weird kid. Making a friend then losing that friend and asking why but all they do is laugh because to them it’s obvious.
I’m regretting not bringing Yoshi, my service dog. He’s still in the last phase of training, and we’re headed to Costco right after this meeting. He and I aren’t ready to juggle the overwhelming nature of Costco with a 6-year-old and 1-year-old in tow. We’ve done it with my husband and it worked great, but he handled the kids needs while I shopped and had Yoshi by my side.
I should have just brought him and taken him home after.
I twirl my rings, take a few 4-7-8 breaths, breathing in my essential oil I have around my wrist.
“Mom! We’re gonna be late. Are you having a panic attack? We should have brought Yosh like I said.”
See, he always knows better than me.
“I’m good now, kiddo. Let’s go in.”
I missed our last IEP meeting in February. I’d had a full breakdown that led to my disabling anxiety disorder and I happened to be in the psych ward at that time. Not having a phone I didn’t remember that we had a meeting scheduled. They called my husband, talked to him on the phone, and everything in preschool seemed to be going so well they said that after kindergarten they expected he wouldn’t need an IEP.
We saw it differently at home. After three hours in school, he’d come home a complete wreck. Whining, arguing, melting down, huddling down under fluffy blankets with his stuffies while watching a show he’s seen a hundred times before. I knew he held on in school but he felt safe at home to show how it really affected him.
I took two quick drags on my nicotine vape. I know it’s a tobacco free zone and don’t care at that moment. I’m a ball of nerves. I’ll be quitting the vape soon, since it’s such a bad habit, but not for another week or so when the kid’s in school and I have only one munchkin to worry about at home.
I grab the baby and we head inside. They all introduce themselves, but I know I won’t remember their names later since I have some partial face blindness. I usually need to meet people a few times before it sticks. They all have the same hair color and body shape, except his teacher, who’s a redhead like my boy and I. I’ll remember her name but she mentions she’s on maternity leave until early November.
One of the ladies starts us off by saying, “We’re all here because Coral asked for an official IEP meeting to discuss some concerns. So, Coral, we’ll let you take the wheel and let us know what we can do to accommodate and help your son best in the classroom.”
So I jump in on my overly rehearsed speech I’ve been practicing to myself for the last 24 hours since we set up the meeting.
“Well, I’m an oversharer, and am never sure what information is too much information. But, I missed the last IEP meeting because my postpartum depression spiraled out and due to some unfortunate events I ended up in the psych ward because I couldn’t stop having debilitating anxiety attacks.” I’m spinning my rings under the table, feeling the nervous sweat slide down my back. “I know they called my husband and mentioned that after this year they didn’t expect he’d need an IEP, but I respectfully disagree.”
I do the thing I do, looking between the eyes of a few people to get the feel of the room but everyone’s nodding and someone says, “I think it’s easy to say that when they’re only in school for a few hours a day. So what can we do to accommodate him this year? What were you experiencing at home after preschool?”
I’m thrown at this point. All I read about from IEP meetings are horror stories of fighting to keep their kids from being bullied, of not letting them have the breaks or stimming toys they need, of special accommodations to help them succeed being ignored, and of IEP’s ending earlier than parents think they should and having to fight to keep them.
My well rehearsed speech in my head suddenly crumbles so I take a moment to look toward my daughter to make sure she’s not getting into anything too small for her. I know she’s not but I need to collect my thoughts now.
After my thoughts re-collect themselves I say, “As soon as he’d get in the van everything would collapse. He’d be argumentative, whiny, frustrated, and angry. We’d get home and he’d need to snuggle in a soft blanket, zone out a bit, and we’d see a lot more meltdowns in the evening on school days.”
One of the teachers asks, “What do his meltdowns look like?” Putting pen to paper ready to write down what I’m saying.
“Lately they’ve been aggressive. He thinks he’s being bad or we’ve said no to something and he hits himself in the head, scratches his legs, and once or twice it’s gotten bad enough he’ll bang his head on the wall. Sometimes it’s just full blown banshee screaming, though.”
She takes notes then says, “We never try to physically restrain any kid, but simply get them to a safe spot and get them what they need to stop self harm. What are some of the trigger signs you look for to help him from getting to that point so we can have our eye out for those?”
“Well, sometimes he gets extra wild and out of control. It looks like excitement but I’ve learned to tell the difference between excitement and having fun, and the difference between overstimulation and just needing to run out some energy.”
Nods all around the table. “We see that a lot. We’ll keep an eye out and learn pretty quickly how to spot it.”
“Other times it’s just frustration and anger that he doesn’t seem to be able to control. He doesn’t like being told he can’t do something, or do something exactly the way he wants to. I try to hand him fidget items he likes before he reaches that point. We’ve been working with his play therapist on the color zones so we’re starting to better help him know where he’s at emotionally and physically.”
“Oh, color zones are great!” says one of the teachers, “That’s something we could easily use. Would it be okay that we do a check in with him hourly to ask which zone he’s in? Maybe we can avoid him getting into the red zone if we know where he’s at better, and it’ll help him start checking in with himself better, too.”
“That sounds great,” I reply, I can feel a release in my chest. This is all going better than expected.
Another teacher chimes in, “You mentioned fidget items. Will he have those that he brings from home or do we need to provide them? We have some on hand but if there’s a specific thing he likes we can order it for him.”
“Oh, I’m doing an order to get him a little bag that holds all his fidget things. Right now he has a spinner and a cube but I’m trying to find an alternative to his new stimming that really calms him down, which is blowing up a balloon, then letting the air out, which I know will be disruptive to the classroom.”
The light switch goes off in my brain, one of the rehearsed things I wanted to mention. “I think he could use breaks throughout the day so he doesn’t get overstimulated. Help keep him out of the red zone. Maybe a balloon could be something he’s allowed during the breaks. I think I saw a sensory room? Maybe in there?”
“Yes, our sensory room is a work in progress right now and not ready, but we’re working on getting it set up by the end of the year. A balloon outside the class, even just walking down the hall with it, that’s completely doable. How often were you thinking he’d need a break?”
This all feels too easy while I reply, “Well, his preschool was 3 hours long, and he was definitely needing a break by that point.”
“How about we do breaks every two hours. We can avoid even getting close to the overstimulation point if we break up his day before he’s even close to being in the red zone, so to speak.”
Nods all around, faces turn toward me.
More notes are taken down.
One of the ladies says, “So, we have the color zone check in once an hour. Every two hours is a sensory break. We know what we can keep a look out for regarding meltdowns. He’ll be allowed everything except the balloon from his own stimming bag in class whenever he needs it. Anything else of concern or that you were wanting us to know?”
All eyes on me again, and I spin my rings, looking down, trying to collect my thoughts. I know there was something else but when my rehearsed speech collapsed I can’t remember now. I should have written it all down. I do better with writing.
I realize it’s been a little quiet for more than what Neurotypicals (non-autistic people) expect.
“Sorry, just collecting my thoughts. I’d had this well rehearsed speech in my head that I ended up not needing because this has gone so much better than I expected. No wonder so many people want to move to this area for these schools!” Smiles all around the table. “I’m autistic too, so sometimes I need a moment to process, I don’t want to miss anything I’d wanted to say.”
“Oh,” says one of the teachers, “I never would have guessed.”
My hackles start to rise, here’s the “you don’t look autistic” sentence coming next.
But instead she says, “He must have great support at home since you understand so well what he could be going through.”
Hackles down, with surprise, I smile, “He does. I adore him. He’s a pretty neat kid.”
More smiles all around.
“I did remember the last piece I wanted to discuss, which is mealtime and snacks.”
The teacher to my left says, “Yeah, we saw on his IEP that he has some eating sensitivities. I had meant to ask about that, so I’m glad you remembered too. Will he be bringing his own lunch?”
“Some days. I saw that you have the schedule for the full month up, so on days there’s something listed that I know he’ll eat at home, he’ll do the school lunch, but otherwise we’ll have him with his lunchbox. How long do they have to eat?”
His main teacher responds, “They have 15 minutes then if they’re finished eating we have a movie in the next room going on that the kids that are done can go watch. We don’t do recess around meals because we don’t like kids feeling like they’re missing out, but the movie can keep them occupied. So that goes on for another 15 minutes. So 30 minutes total to eat. But honestly, if they’re still not done I let them bring their lunch back to the classroom because we have a lot of pretty slow eaters at this age and I don’t want them to be hungry or upset that they don’t get their meals finished.”
“That’s wonderful!” I say, “Do they have snack times, and are they provided by you guys?”
His main teacher, again, “Yes, we have snack time, and they can be provided by the school. Would you like that? Normally I have the parents pack a snack for the kids since they all have their own particular snacks they prefer.”
“That’s better, actually. His preschool did snack time but I think he only ate one of the snacks they ever had available. So that’s perfect.”
His teacher then says, “We do testing and evaluations throughout the year in kindergarten. Do you think he’ll need any accommodations for that? A separate quiet room? A little more time?”
I’m blasted by this question. Something I hear parents have to fight tooth and nail to get for their kids in other schools.
“Honestly,” I say, “I have no idea. He’s never really had tests before. Why don’t we have him take the first one like you would all the other kids and we can see how he does? If we need to add that to his IEP after that, just get in touch with me and I’m happy to come in and sign whatever forms are needed to add that in.”
My heart feels lighter. Fuller. Near to bursting with relief and excitement. We moved here four years ago. Colorado transplant in Nebraska and I was depressed and devastated that we’d had to make that decision. We were going through medical bill related bankruptcy and it was either move in with my father-in-law or decide what bills to stop paying and likely lose our home.
Now, four years later, still living with my father-in-law, I’m in a school district that obviously understands what it means to provide appropriate accommodations. Something I know would not have been the case in the district we were in back in Colorado. My husband found a job he’s perfectly suited to and takes care of their employees in a way that’s almost unheard of in the US. I’m finally back to my writing and artwork. I believe in the universe providing and had no idea when we moved just how bountiful this new location would be for us in terms of schools, work, and community support.
While I sign a form with the new accommodations written in, including “optional separate room and more time for test taking if needed” I feel like we landed in the right spot.
This is what actually autistic adults are fighting so hard for. I know I’m my son’s biggest advocate at his age, but I didn’t have to advocate for anything. Just simply tell them where he’s at, what he needs, and they listened and made it happen.
This is what every IEP meeting should be like around the US. No fighting for our neurodiverse kids to get the accommodations they need and deserve, or the right type of treatment, and the fact that they don’t restrain any children but get them to a safe environment or a safe way to avoid self harm; all these things are what we need and want in the actually autistic community.
If you’re a teacher or work in a school, please take a moment to really think about how you handle your neurodiverse kids. Take a page out of my son’s new school and find the right accommodations to help. Helping and accommodating is different from restraining, trying to make the kid more like their peers, keep them from having the things that help them keep calm, or telling them what they’re doing is wrong. It’s finding the right tools and ways of communicating with the student so they have the best experience of school that they can.
The more we speak out in our autistic community the more likely this will happen. So spread your experiences, good and bad, to as many who will listen. I’m a huge fan of the Neurodiversity movement. The belief that neurodiverse people (learning disabilities, ADHD, Autism, etc) are not broken or incomplete but just have a neurological difference. That disability, no matter how profound does not diminish personhood. Neurological variations are a vital part of humanity. And disability is complicated, and it’s often defined more by society’s expectations than by individual conditions. I know many autistic adults who don’t consider themselves disabled at all. I consider myself disabled from my secondary diagnoses (PTSD, anxiety disorder that now requires a service dog, depression), but these other diagnoses are from living in a world that I had to mask my true self and cope with too much overstimulation all the time, not to mention a crazy good memory. (Credit to much of that explanation from a different article that you can read in full here).
So if you’ve read this far, please take a moment to consider the autistic individuals in your lives and instead of making them fit into the box the rest of society thinks they should be in, accommodate them and let them speak for what they need. Forcing a star shaped object into a circle will only break it down and cause unknown issues. Let actually autistic people just be the star they are and give them what they require to be themselves in a world that doesn’t always help or accommodate them.