The Fall Of It All

Ariana and Tony at First Church UCC November 8, 2026 and from this past Halloween. All photos by Ariana

I struggle sometimes to remember that our little man is a teenager already. But I certainly don’t in moments when I look at pictures of us together, like the one from Halloween, where he’s starting to tower over me. That and the fact that he’s also begun refusing to smile for posed pictures, giving me a verbal “uh-uh” often when I ask.

Much of the work of this past summer was spent in helping him acclimate to the idea that he wouldn’t be returning to a school at this time. At first, we were focused more on processing the feelings he had about how the situation was handled by the public high school team. I think a short reminder is best: he felt like he was doing his best, and they basically delivered a verdict of your best isn’t good enough. For me, it was a bit more complicated, because I had to swim through the grief of all of the opportunities this could limit for him (like being able to spend more time with Autistic peers most days of the week) and shake myself off from the assessment of their district’s lead school psychologist about my capabilities as a therapist and an aide.

Despite the fact that she has never seen my work in person, and that I received full marks for all of my evaluations with the middle school, I am going to openly acknowledge at this time that she said in the transition meeting that their team didn’t see me as being effective if he couldn’t generalize cooperation to total strangers at this time. I am going to briefly alight my soap box because I feel like there is far too often this prevailing misconception that for any deficit – whether the child is neurotypical or not, disabled or not- the parent is to blame. I think it must be acknowledged that he has had many BCBA’s working with him over the years, including during the time he was in school. And he made tremendous growth in his skills during his middle school journey, and I was touched when the gym coach from the middle school credited me for that in our son’s final IEP with them this spring.

I think my son moves slower in this area than many people would like. And I get the concerns, I don’t live in a vacuum where I don’t recognize the need for him to be able to work cooperatively with an unknown to him teacher from day one. I would also say that they may not understand the “why” for his struggles without experiencing his world the way he does. His mixture of extreme sensory differences mixed with his fear of others has left us with exposure therapy as the only successful route forward, and when a person is that fearful, the only way you have meaningful progress is by moving at the pace they feel comfortable with. And sometimes it’s about the sensory differences. Is he having a hard time with the way someone smells in terms of a perfume or their breath? Or is it the volume of their voice? Sometimes it’s about his mixed receptive expressive language disorder. Are they speaking too quickly for him to process their words? Is there so much overall noise that he can’t pick out their words and needs pictures and gestures?

And I would have hoped that their high school district’s psychologist would have remembered that there were other professionals working with him in the school environment, and it isn’t all about me, even if they would have wanted to leave it there. They never should have. You can wish for more, but the professionals and parents working with our son should not be blamed if he doesn’t feel comfortable moving through those types of fears and challenges more quickly. He was still moving forward. He’s doing the best he can, and compassion would have been a lot cheaper for their district than the amount he was awarded through ESA (approximately $37,000).

So, that brought us to early fall, when he started to miss seeing kids regularly. At first, he had said he didn’t want to go trick or treating. Once the longing to see other kids got a bit stronger, he asked to go. And we did…in the rain. He got himself a big bucket of candy, though he didn’t love that it was raining so heavily for the process, that made it harder for him. He also decided he wanted to go to Fall on the Spectrum this year (two pictures from that are shown below, with the second on their train ride). This is the first year he’s ever gone. He did really well overall. We did need to give him some prompts to wait his turn for the bouncy slides, but I was super pleased that he felt comfortable enough to try going this year.

But the loneliness of home still has been getting to him. He’s started trying to hug strangers when we are out working on skills in public. So I asked him if he wanted to start going to a church again so he’d have a more regular place to go in the interim where he could build relationships of some sort with others, and he said yes.

Now, this has been something I have been panning for a while. Although I identify as Unitarian at present, I have for some time felt that likely the congregation most likely to embrace the unique awesomeness that is our son is First Church UCC. And I felt this was reaffirmed when they received an accessibility to all designation recently. They have a sensory room and I kid you not, there were sound cancelling headphones on the welcome table this morning. But there’s always been one goliath sized challenge as regards to attending this church for our little man.

Ok, so this is from the service today. I am showing faces because they have a YouTube channel, the world can find their affiliation with this church already. But what I want you to take a gander at is that band. The drum kit, the electric guitar, the implied amplifiers…it’s always been a big ask. But, I had a plan. Been working on it for a while. This involved watching their videos on YouTube in home practicing sitting with progressive volume increases over time as the lower volumes became tolerated. As he had started doing well with assemblies at the middle school, it had been in the works to expand his access in the community there regardless of what happened with the high school as soon as he felt interested in doing this.

I asked him yesterday, “do you still want to go to church tomorrow?”

“Yeah” he said. I have been seating us in the back in case he gets overwhelmed and we need to leave early out their back door. Today he kept moving us up until we were closer to people. Below is a mix of pictures from two weeks ago and today. And in an unexpected twist of fate, there was a fire drill there we didn’t know would be happening as part of their emergency preparedness planning, and other than trying to hug two people on the way out, he rolled with it and we had a good morning.

He’s been doing great with the band music volume. Successful desensitization and exposure therapy always has to be a gradual building upon what is tolerated only when it truly is tolerated…it can’t be forced and still provide the results people are hoping for. We drove there without him needing a five point restraint safety harness, as I have continued the work with him at home that I began at school for riding in vehicles for building up his safety skills and impulse control in that area. So seatbelt only it was with a buckleroo fastener that keeps him from accidentally or intentionally depressing the seatbelt button.

On Friday, he and I had done work in Arrowhead mall on his fear of elevators and then stopped at the grand opening of the Safeway down the street from us. I’ve never done a store grand opening myself, I had no idea how crowded that would be. Despite the fact we dropped his bag of skittles very early on in that outing, he did great…until 5 minutes into our 30 minute wait at the check out. Fortunately, we were in the candy aisle so I did the incredibly gauche thing of grabbing a bag and opening it before I paid for it, restoring peace and calm and a cooperative 30 minute wait.

The gentleman behind me said “you’re a good mom.”

I thanked him. But I also reflected that trying to navigate those types of moments would have been part of why the high school was reticent. He still requires an exposure therapy approach at some points, or at the very least, use of ABA or PBS for academic tasks and long waits. You can’t just tell him once to do something and have it suffice in a large crowd or with a long slow moving wait. That doesn’t mean we can’t still find a way to tick tack toe around the loss of a public school for generalizing his skills with others or in these types of situations, we are just going to have to work more creatively around it. We do have the blessing of a teacher hired to work with him in home at this point, and he has enough of an ESA award that we may speak with a private school near us about allowing him to go in a couple hours a day for the other three days, as he’s willing to go someplace without me for an hour or two to start. And if they agree to that, we may prefer to keep it a mix because I do think he focuses on academic tasks better in the home where there are fewer distractions from others.

So through the fall of it all, both autumnal or otherwise, we are going to keep moving forward the best we can.

This is how much it costs to hire a teacher in home, by the way, and literally this wouldn’t be doable without ESA, so I believe this definitely needs to be protected for families of disabled kiddos who need supports they can’t find in the public schools. I wasn’t kidding when I said I was a cheaper option for any public school to help bridge the gaps for him… the middle school was paying me what was standard in that district- only dimes above $15 an hour as an aide.