By eighteen months of age, our son’s autism was not considered severe, but he seemed to be getting more out of touch as each day passed. He could not speak or gesture, could not imitate at all, and preferred tracking wheels on cars or running around the kitchen island over all else.
The first thing we did with our son was what many parents do when their child has a delay. We signed him up with Early Intervention, provided by our state. Except he only qualified for one to two hours of therapy a week, and none of it was with a qualified ABA therapist. At the time, this went against the recommendation of our developmental pediatrician, who wanted Bean to receive twenty-five hours a week of true ABA therapy. After about a month of Early Intervention we started to look elsewhere.
I’ll write more in the future about what it took to get our ABA program into place, but for now I’ll say part of it required calling every ABA therapy group I could find, just to be put on waiting lists. Many told me the wait was two years or more. With a child on the spectrum, we didn’t have that kind of time to waste. I spent day after day on the phone, trying to get a therapy program in place, but the truth was, there was so many others kids just like my son who needed the same type of therapy, and only so many qualified therapists in our state who could provide it.
Eventually we found a qualified BCBA through a friend who was willing to put together and oversee an in-home program for us. If we had not known that friend, I wonder if we would still be on a waiting list. This, too, deserves it’s own post, because the lack of good qualified therapists for what is a quickly-rising disorder has already left many children without the proper therapy they need early on to succeed.
Our son started out doing only a few hours a week of ABA. We slowly built up the hours as we saw he could handle them. At first it was so odd to not be with him all day long, and the time he spent with his teachers made me uneasy at first. He was so little and it seemed so weird to have him “put to work” so early on. But as the therapists worked with him, I could see it was not like that at all. They were so gentle, so sweet. All mother’s themselves, they seemed to know how to get through to him, and they also knew when not to push him too much. They were good at establishing a happy relationship first and foremost, and you could tell Bean was comfortable with them.
Since we were really starting at zero with Bean regarding communication, the first thing they did was work on his eye contact and teach him how to point. My husband and I also underwent parent training so that we could keep our methods consistent even when Bean was not in therapy.
I remember asking our ABA supervisor shortly after the program started if our son would ever talk. She was often hesitant to promise me anything, since, of course, she doesn’t own a crystal ball. But she could see he was responding and she reassured me he would. I still didn’t believe it until one day our son actually did. Shortly afterwards, he asked for “cheese”, which is especially funny considering at that point we were going dairy-free.
After that, the progress was quick and steady. Some programs he flew through and others he was stuck on longer, but he was finally starting to learn what communication was. His stimming was still occurring daily but I started to record all events around it and could see that it would generally come around the time he needed to have a bowel movement. It would get worse if he was constipated for a few days.
The fogginess was still there too, but we were able to implement some of the therapist’s strategies to get him to attend to us when we needed him too. And that helped him learn. Once Bean saw that learning was fun, he seemed to open up to it faster. By the time he was two years of age, we took him back to the developmental pediatrician, who was extremely pleased with his progress. Once again, the doctor would not put a label on him quite yet. At the time that was fine with us.
From two to three years of age, we got serious with homeopathy and supplements to help solve Bean’s gut issues. We felt, like many parents of children on the spectrum do, that poor gut health was a key player in Bean’s fogginess, tantrums, and stimming. We were doing the GFCF diet, but because I was pregnant again and having a tough time with morning sickness and fatigue, we did not yet do it as purely as the GAPS and SCD standards would dictate. Still, Bean made a ton of progress. He started to put two and three words together, was pointing up a storm, and his eye contact was getting better and better. Our son had never completely lost his sense of humor, but he was joking with us even more and his body felt more at ease. He was singing songs and dancing and starting to care about more than just wheels again.
Homeopathy was also helping us to really get to some of the underlying health issues our son was having. We worked with a homeopath in New York who specialized in autism. My husband and I tried it first and then started with Bean. We have not stopped since and are convinced that, while traditional therapy gave us many of the gains with Bean, treating the underlying issues made his body relax and open up to learning. Who can learn and attend when your body is not well?
By the time Bean was three, we were still having difficult days (to say the least), but I could see that his progress was on an overall upward trajectory. He conquered potty-training successfully with the help of his therapists and was even able to enroll in a mainstream preschool three mornings a week with the help of an aide. He was doing thirty-three hours of ABA therapy, which included a mix of school, sports class, playdates led by a teacher, and one-on-one ABA sessions. Though not exactly conversational, he was speaking in full sentences. He was still small for his age, but he was growing and was able to reach the 50th percentile for height by his three year pediatrician appointment.
At the time Bean turned three, we felt that we really needed a label for him, at the least because we needed help paying for therapy. We took him to the Yale Child Study Center in CT, where he underwent a very thorough evaluation. They felt, after a year and a half of therapy, that while our son didn’t completely “fit into the autism world”, he also didn’t acquire language and social skills completely naturally. We were finally able to get the diagnosis we needed to move on.
Now at four years old, we have a child who is quite verbal, who plays age-appropriately with his toys and (usually) with his sister, and who has a wonderful imagination. We get a ton of joint attention now and notice Bean embarking on more higher-level thinking in the last couple of months. He also jokes, engages in role play, and likes to do things himself these days. He still struggles with social language, and that is the main area his teachers work on with him. His stimming and fogginess can either be completely gone, or they can come back during times of detox or general stomach upset. We are still working on his conversational skills and language volley, but his language is coming much more naturally and his ability to generalize is amazing. He loves playdates, even when he struggles with the social interactions, and someone is always there to work on showing him how he can overcome some of the types of communications that don’t always come naturally to him. Still on our agenda are his focus issues and weight gain, both things we feel often stem from his stomach.
Overall, though, we feel like we have our son back. We know now, while there is still an uphill battle ahead of us, we are on the right path. We truly believe he will be ok.
Next up: getting our kids to eat eat new things and the adjustments (and joy!) that came with adding a second child to our family.