Where Do We Go Now?

by | Apr 5, 2024 | Caregiver Reflections | 0 comments

Amidst the everyday challenges as of late, there is something looming ahead in the horizon. If you’re anything like me, then the fear of the unknown can be quite debilitating. As a fellow neurodivergent myself, looking back, I have always had an obsessive apprehension of how things will go. Not having a plan can put me in quite the pickle to be sure.

With that being said, I am also one that loves the occasional impromptu night away, or even an unplanned night drive. I have been known to suggest to my husband without notice that we should pack up and go for a night or two. I suppose it all has to do with the fact that it is my choice, and not the rug being pulled out from under me.

Currently, that is how I feel. In just a few short months, I will have to come up with something to fill my boys’ day. For the past six years, he has always had a place to go. In the beginning it was school, then it was a mix of therapy and school. After that, it was full time therapy only. It has been like this for over two years.

I’m at a point where I have mixed feelings. The whole reason that he has not been attending school was for the simple fact that he was being entirely too overstimulated. He would act out in attention seeking behaviors such as standing on tables, throwing items, and more. I was even told that school may just not be the right thing for him.

Thankfully, we were full in with great therapy, and he then went back to just therapy. He attended ABA, occupational, recreational, and speech therapies. Each therapy honed in on vital goals for Xavier to work toward in order for him to achieve as much independence as possible.

Then, a few months ago, we were given the news that we have heard on and off for a few years: insurance was really dragging their feet on approving therapy. At this point, we had been given a heads’ up, so it wasn’t that much of a shock, but at the latest meeting when his therapists informed us that they too were recommending him to begin the phasing out, it left me with this question:

What now, then?!

I went to work on researching possible day programs only to be met with the fact that kids like ours aren’t really given that many choices. It’s either school, therapy, or homeschool. There is no in between. In a perfect world, there would be something that had the best of both worlds: for my son to have a 1:1 with him to learn things in a relaxed environment: much like he is currently doing, but a little more down time. 

It just isn’t that way, though. The thing is, my boy NEEDS something. Homeschool worked a lot better than I expected it would for six months during Covid, but my guy does a lot better if he gets out of the house and in a different environment for at least a few hours of the day.

If he is homeschooled, at this point, it is better to have two people with him if we are out in public. This is due to his elopement or running away. That isn’t possible for an everyday routine. If he were to be at home full time, we would both drive each other bonkers.


I reached out to the assistant director of special education for the district that he had been in previously. The school district has recently undergone some major revamping due to budgets. Lets just say after speaking with her, the plan sounds even less appealing. When Xavier was attending school, the ratio of teachers/students was a mere 3:1. This was not counting the fact that I was able to get it approved for him to have his RBT attend school with him. 

It was the best of both worlds to have a keen eye on causes of triggers as well as solutions to what could prevent them from even occurring in the first place. Now, the ratio would be double that! If he had a hard time with six including him, how the heck would he be able to handle two times as many kids?! 

That leads me to yet again…where do we go now?

I will have hope that we will be able to give Xavier the best start at exactly where he needs to be. That’s one thing that I myself have really honed in on during all of these years as a mom and caregiver: make the best out of each situation. 

I was actually told something the other day by my chiropractor. No matter how much pain I am in, I always have such a nice smile, and it really brightens those around me. He continued by adding that I had such a good attitude. He had no doubt that it would positively affect my health. He saw many patients, and a lot of them had far less going on than me with the worst attitudes. Talk about a compliment!

So, I’ll take a deep breath, count to ten, and put my big girl panties on.

Have you been in this situation? If so, what did you do?

This was a guest post submitted by Nicole Willard of Raven’s Lore: An Autistic Family’s Expedition. You can follow along with their story here.


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