After the Diagnosis

I last wrote about something that happened in the present, but it's only fitting I should use one of my favorite literary techniques (for those that don't know, I'm an English teacher) and flash back to what happened after the diagnosis.

As I mentioned before, we got the diagnosis at the end of June, 2022. That night, I called or emailed a number of ABA clinics (13 to be exact). I heard back from one person pretty quickly, and when we left our hotel in the upstate of South Carolina and drove to Washington D.C. for our summer vacation, I spent much of my time chatting with this one particular gentleman from a local clinic in Charleston. He was above and beyond. I don't know if he just REALLY wanted our business, or if he's really that passionate about ABA and wanted to steer us in the right direction. Quick sidebar, ABA stands for Applied Behavior Analysis. The doctor in Simpsonville said it's not the "end all be all," but she recommended it with a change in diet, etc. 

So the guy, we'll call him Paul, called me NUMEROUS times that day as we drove. He had me call my insurance company and tell them that they should do a one time allowance for us so that he could serve us, since insurance didn't cover his clinic. I can't begin to tell you how much time he and I spent on the phone over the next week, or how many texts and emails we exchanged. I do feel he was genuine and he gave us a lot of advice, but in the end, we went with the first clinic that a) was covered by insurance and b) had an opening for us. 

Before I get into the ABA, know that I had heard about it before starting. I had heard that some autistic kids get 40 hours a week of therapy, and I was completely against that amount of time for Myers. How can a three year old be expected to have a full work week's worth of therapy hours? On top of school? Church? How does that even work? I had heard that ABA places are REALLY hard to get into, that it takes FOREVER to get the ball rolling, and that they are pretty adamant about you following their protocol. 

When I heard from Connec-to-talk, the first place that could take Myers, I wasn't thrilled with my initial conversation with them. The girl with whom I spoke didn't seem like she was all that polite at first. She said that the clinic's recommendations (once they met Myers) would need to be followed. Her analogy was this, "If a doctor prescribes medicine, but you don't take the correct dose, you can't expect it to work correctly." I just didn't get the best feeling after our phone chat. I was hesitant because I knew my child, and I thought (very strongly) that 40 hours would be too much. 

My second hesitation/annoyance was this...if they "prescribe" 40 hours a week, but we plan on traveling, then he isn't going to be able to do those hours. They would need to be flexible in that, in my opinion. Also though, if they say ABA is SO important and he needs the hours, why are they dragging their feet in getting him started? It was the end of June when Myers was diagnosed. It was OCTOBER when they actually started his therapy. 

On October 17th, I wrote in my journal: 

"I have had extreme anxiety around ABA. From the moment we were told we might need it, I was worried about the ridiculous amount of hours I knew other children got. Yes, other kids are different, but even as advanced as Myers is in so many areas, he too has qualified for the maximum number of hours. In June, when we got the autism diagnosis, I started reaching out to therapists. Only today, October 17th, did Myers begin his ABA therapy. 

I cried so much yesterday. I was worried it would be too much for him. I’ve had a lot of anxiety around school (he’s only in the half day program, but I just didn’t know how to feel with the newness of therapy on top of school). I was both excited ABA would be at school with him, and sad that he’d have to go after school 1-4:30 to the clinic, because that’s a lot for a three year old. I was so tired all day. My eyes hurt from crying so many tears and not getting enough rest. Myers apparently did really well today though. He napped about 10 min in the car on the way home, and he’s been silly and full on energy since. He wrote two words in magnet letters today…“quick” and “fast.” My three year old can spell words my 4th graders can’t. I love this boy. I love every bit of him and I tell him daily…he is my favorite. I hope ABA will be a good thing for him and that he’ll be happy with school and therapy. That’s what matters most…"

Day two went well in therapy and although I still had hesitations, in my journal on October 18th I said, "It’s definitely going to take time to get used to this new schedule, but I’m thinking we should give it a couple of weeks and see if I still feel like it’s too much. My momma gut says it is, but also that he likes it currently and maybe it is good for him. The online group I’m in has given me lots of mixed reviews on ABA and its importance. We’ll just have to see…."

So now we are in week six. Myers loves the clinic. It's a 5000 sq foot space with toys and an indoor playground. He's one-on-one with his therapist there, and apparently she thinks Myers hung the moon. We took the week off for Thanksgiving, so it's rough trying to get back on schedule this week, since school also started back on Monday. He's tired. He still naps most days when he leaves the clinic. It takes 20 to 30 minutes to get home each evening, and he's usually really tired after his full day. He plays in the evening and has dinner, his bath, etc. He's a happy boy. Although it's all been a learning curve, I am really happy with the clinic. I spoke with Myers' BCBA (Board Certified Behavior Analyst) from the clinic tonight and she said he's doing really well. We are so proud of his growth.

So to recap, what happens after the diagnosis? A lot. ABA is just one part of it. Stay tuned for more.

Photo borrowed from New York Times