Part Three: Treatment
Having struck out with the Autism Clinic (which was supposed to have a list of community resources and provide me with some direction), I set out on my own to accomplish two things:
I’ve found that if google fails you, it’s a good idea to ask your community for information. So I got on Facebook as well as talked to anyone who had even a remote connection to special needs children, to see if someone knew of a daycare that would take my son. It just so happened that a client (who runs a camp for special needs children) has a friend who is an ABA therapist that opened a school near where I worked. Seven hours a day for the cost of a high-end daycare, I was able to leave my son with two of the best ABA therapists in the state. While it wasn’t ideal given that I needed to work eight hours a day, it was the absolute best situation. I largely credit those two women for making a huge difference in my son’s behavior. They are amazing and I never would have found them if I hadn’t run my mouth because the school is small (intentionally so) and they don’t advertise. It’s really a word-of-mouth situation.
While my son began ABA therapy daily at that point, I still wanted to make the most of getting him into an Early Intervention program. (As a side note, we did complete EIGHTEEN weeks of PCIT which is recommended for children on the autism spectrum and has shown to be helpful. I think it helped calm my son down but we didn’t make any real progress in terms of his autism symptoms.) Since the psychologist never sent that email to put me in touch with the program coordinator, I sought out the director of the program. Now here’s where I had one distinct advantage: I work for a healthcare system so the treatment providers and doctors–we all work for the same employer. I worked for said employer for over fifteen years by that point and honestly, I knew everyone. So when the psychologist proved less than helpful, I just emailed a woman I knew in that department who gave me the director’s name. As luck would have it, I had already worked with him in a professional capacity too. He was nice enough to call me that night and the process of getting my son into ABA therapy in the morning (before school –7am to be exact) began.
I really thought going into it that we were finally on track, but I was wrong. The lead ABA therapist we were assigned to work with, constantly canceled appointments. My son’s school was a mile and a half from her office and it took her two months to finally go by the school. She was supposed to help with all aspects of our situation–home and school, but she opted out of helping with the school. (That was fine. Better ABA therapists had that under the situation under control) But I desperately needed help at home. My son was hitting me and pulling my hair out on a regular basis. He would not listen to a word I said and the early intervention therapists where supposed to provide in-home treatment even if you live 30 miles from their office. But this therapist was only willing to make the drive once. In the meantime, she was telling her boss that I was the one doing the cancelling of the appointments. This went on for about six months until my son started a neurotypical summer camp where he truly did need his ABA therapist to show up when she said she would. The first day of camp came and she didn’t show up even though she had agreed to come and help. Shortly thereafter, I got an email from her boss saying that because of all my cancellations and my scheduling conflicts, they weren’t going to work with us anymore.
That email came right after I took my son to see his psychiatrist for medication refills and the psychiatrist became very upset when my son had an aggressive tantrum where he hit me repeatedly. The whole time the psychiatrist just kept saying, “Why is he doing that?” I don’t know. I’m just a writer. I don’t have a four-year medical degree and spent years working with children as a child psychiatrist. Seriously! It was the most ridiculous thing I’ve ever seen a medical professional too.
Three strikes and mommy is ready to drink…
The psychologist wouldn’t explain his diagnosis, the psychiatrist couldn’t handle his tantrums, and the ABA therapist couldn’t be bothered to show the hell up. So my son started summer camp without any behavioral help while I held my breath and tried to regroup. A very nice teacher at his summer camp pointed out that I didn’t have to put up with all of this. So what if we worked for the same employer and I knew these people who had let my son and I down? I owed them no loyalty.
So I fired everyone.
Literally. And then I told anyone who would listen to me just how bad of an experience I had in hopes that no other parent would go through what I did. Isn’t that what it’s really about? We can’t prevent this crap from happening to us but maybe we can spare someone else.
There were some more bumps in the road. Kindergarten got off to a rough start, but I did end up getting my son ABA therapy for a neurotypical program. Four mornings a week his ABA therapist came for two hours while he was at school. They helped him learn how to make friends and cope with not always being the center of attention. I tried to put him in a regular summer camp but he suffered huge setbacks after a near-fatal car accident that caused regression I’m still dealing with almost a year later. (That’s a whole other post for someday years from now when my PTSD is under control.) He was diagnosed with ADHD over the summer and medication helps, though I’m still taking a punch to the face more than I’d like.
Right now he’s in a regular first grade class with no ABA therapists and he’s doing okay. Every day after school, we do ABA therapy in our home. One night a week we do occupational therapy for his newly diagnosed Sensory Processing Disorder. He sees a different psychiatrist, one who is very dedicated and offers assistance whenever she can. His lead therapist is very dedicated to helping with anything she can. The company that provides ABA therapy is a private company that has been great to work with. They have offices all over the country so check them out if you’re looking for help.
With autism, there are good days and bad days. I continue to max out all of my resources and get him as much ABA therapy because the clock is ticking. The older the child, the more set in their ways they tend to be. My goal is for him to live his best life whether he’s working at McDonald’s or building a career as an engineer. (His IQ test came back at above 126 so fingers crossed he’s supporting Mommy in her old age!)
It’s a challenge to stay sane. Somedays, I think this disease is going to break me. The hardest thing I’ve done in life is raise a special needs child 100% on my own, but I’m still standing and slowly, my son is making progress. Ultimately the sacrifices I’ve made will help the kiddo to have a better quality of life.
And that matters more than my sanity. . . right?