It’s been a little while since I’ve added to this series, recapping a little bit about what our journey has looked like this year, following Henry’s autism spectrum disorder diagnosis in April.
In part one, I talked about what led up to the diagnosis, and part two covered some of the process we went through to get Henry set up with therapy. In this post, I’ll get a little bit into some of the early days of therapy for him.
As I mentioned in previous posts, we decided to move forward with ABA (Applied Behavior Analysis) therapy in home. This is a pretty time-intensive therapy, and some kids do it in a special center, but in our case we opted to have in-home therapy for numerous reasons.
First of all, COVID. Clearly, as our daughter is still doing distance learning at home in October, back in May and June when we were making these decisions, we weren’t at all comfortable with sending Henry to a facility.
And in fact, it was a stressful decision for us, weighing the pros and cons of the prospect of having people come into our house. We had been, and have been, pretty strictly quarantining, and were nervous about introducing new people to the mix, but in the end, we discussed safety procedures with the therapists and agreed that the benefit to Henry was worth taking that leap.
As with most anything that involves insurance, it took forever to get things approved and rolling, In the end, we were set to start ABA in early July, with a few short “get to know you” sessions just before our first trip back to Wisconsin. It was after we got back that Henry started full time.
And I really do mean full time. When we started this process, the inital assessment indicated that they would probably suggest 20 hours per week at most for Henry, but they’d request 30 from insurance just to make sure everything was covered.
Well somewhere along the way, the actual therapy schedule did leap to 30 hours a week, and that’s where Henry started. Now given, a lot of this time is spent in play, interspersed with special activities and things, but still, that is a long time for a rambunctious 4-year-old to focus on anything.
It amounted to having one therapist with him from 9am to noon every day, and another one from 12:30 to 3:30pm. Every weekday. And on top of that, he also had one hour of occupational therapy, and one hour of speech therapy each week. Those were both over telehealth.
Things started out pretty smoothly, and Henry loved his therapists. He was excited for them to come, and even Amelia loved having people around. She jumped right into the play activities she could participate in, and in many ways, helped Henry feel more comfortable with the situation.
From the beginning, Erin and I were concerned that this was a lot, but we decided to give it a shot an see how things go. After a week or two, the honeymoon period wore off, and we saw times where Henry would hide or clearly dread the next therapist coming.
After his second therapist would leave in the afternoon, Henry would sometimes just collapse with exhaustion on the couch. And often he’d have one of those OT or speech therapy appointments in the late afternoon, and we were really, really struggling to get him to engage.
Let’s be honest, that is a lot of therapy to ask from a grown up, much less from a little boy. We continued discussions with his BCBA and therapists, expressing our concern, and frankly they pretty much agreed. Henry needs support, but probably not that much, and it could be that doing too much could actually decrease the effectiveness.
But, we all agreed to give it a few weeks to give it a chance and then make changes as needed. Suffice to say, after those few weeks, it was pretty obvious to all of us that we had to scale things back. The whole team was on board, and we dropped Henry down to 20 hours per week near the end of August.
It did require some tough changes. Henry really did love both of his therapists, but making this change meant scaling back to just one. We had to say goodbye to Liz, who he called “Lizard,” and that was sad. We were all pretty emotional about it, and we did our best to explain to Henry that Lizard wouldn’t be coming to play anymore, and I still remember when she said her goodbyes, he went quiet as a stone and just stared at the TV, refusing to acknowledge it.
I get it. I know my son has enormous emotions. That is one of the things we are really trying to help him manage. I know it was hard for him, and I think the only way he could process it was to put his shields up like that. I know he understood, and he still asks about her sometimes, but I understand his doing what he had to do to protect his feelings in that moment.
So from then forward, Henry has one ABA therapist who is just here for 4 hours in the morning. It has been a much, much better situation. Sure, he still has good days and bad, but he is more engaged, he is making progress, and he isn’t exhausted all the time. Our gut feeling was right, and we’re very glad we spoke up and advocated for what was best for Henry.
We also made some adjustments to his other therapy. We ultimately chose to drop speech therapy for right now. His therapist was wonderful and we loved working with her, but even she felt like Henry was having to deal with a lot of therapy out of the gates, and that his speech level was close enough to being in line with a typical child his age that it wasn’t really a priority. We can always go back to it, but for now we are putting that on the back burner.
We did decide to up his occupational therapy from one hour to two each week, so now his OT comes to see him twice a week. He is also a really sweet, excellent therapist, who has done great work helping Henry deal with some of his sensory issues, and also some fine motor skills and other things.
All in all, we couldn’t be happier with the team Henry has helping him, and helping us. It’s definitely an up and down journey. There are weeks where it feels like we see real progress, and weeks where it feels like we fall into a pit. There are times it’s a little maddening having people in the house all the time as we’re all trying to live our lives and keep our heads above water in strange times, but we’re adjusting and keeping focused on the benefits to Henry and our family as a whole.
So that’s the high-level view of Henry’s support path over the past several months. I’ll write more about some of those ups and downs in another post. The main takeaway for us, and for anyone reading this, is that I think we learned that sometimes less is more, and most importantly, no matter what the situation is, always listen to your gut when it comes to your kids.
Advocate, ask questions. Ask an annoying amount of questions. If you need advice on that, hit me up. Nobody asks more questions than me. I consider Columbo to be a personal hero of mine.
“One more thing…”