It’s 7:30 am and we are waiting in the car for our carpool friends to meet us. My happy boy is in the back giggling about something—I will never know what. An idea has been brewing in my mind for a bit, and I decide today is the day to try it. I tell my boy that he is big now (four inches taller than me at 15), and he needs to start getting out of the car by himself, just like his carpool friend does. I tell him step by step. “You need to take off your seatbelt (he mastered this just recently), put on your backpack, open the door and close it, and open [the] other door and get in.” I confirm with him “OK?” He responds “OK.” His response gives me no confidence this will happen. “Yes” and “OK” are his default responses. Our carpool friends arrive. My boy gets out of the car independently and gets into the other car. I even get a wave goodbye. I send up prayers of thanks. He did it! All by himself! The other mom is applauding for him and nodding her head at me. She gets it.
My boy has autism. We celebrate every step of progress as we go. This may sound like a small step, but it was HUGE. A year ago he did none of those things by himself. We called in our old behavior therapist, who was with us from ages four to eight, to come back and help with independent skills which were declining instead of increasing. Calling her again felt like a step backward. We had originally done applied behavior analysis (ABA) with the hopes of increasing communication and decreasing self-injurious behavior, as my boy expresses his frustration by biting himself. My plan was to continue ABA until he was conversational. It just didn’t happen. It was hugely expensive and starting to just be too much. I was beyond disappointed we hadn’t reached our goal. There was a lot of progress, and ABA laid a great foundation for reducing behaviors and learning, but it didn’t take us where I had hoped. I’ve spent many moments since wondering if the capability for conversation wasn’t there or if we gave up too soon. Was there something else we should have been doing?
We followed ABA with three years of a special needs karate class. I figured he would work on physical and occupational therapy, discipline, focus, and social skills—and hopefully fun all at one time. It was therapy but not, in a real-life situation. It was a great program. We made friends, and we got lots out of it. I had hoped the frustration could be focused into kicking and such, but that didn’t happen. I spent maybe 25% of the class on the sidelines with my boy, calming his meltdowns and redirecting him back to class.
Then, we moved from a public school, self-contained classroom to a special charter school for autism. This was a great decision. Everyone in the school was trained in and understood autism instead of just his teacher and classroom aide. He continued to have speech everyday and occupational therapy often. He was in an environment of acceptance where his strengths were seen before his weaknesses. Still, there was no drastic change in communication or behavior.
Against my hopes, my boy had to be medicated due to self-harm from the time he was in kindergarten. We made a switch from a neurologist who couldn’t be bothered to return my calls to a psychiatrist who thought outside the box and was a better fit for us.
We did the gluten-free/casein-free diet, which didn’t work for us. Then, we tried different nutritional supplements. We delved into special needs music and dance classes and participated in buddy sports, including running and basketball. He enjoyed the basketball more than running and learned some skills, but alas, we were still sometimes on the sidelines melting down for portions of many games.
In the meantime, I met some lovely families through all of our extracurricular and school-related activities. Most of the time, the other kids—mostly boys—are higher functioning than mine. I often come home to tell my husband about our day and describe a new friend or acquaintance. “He talks more than our boy,” or “He doesn’t talk a lot but he’s so calm and happy. I just wish that when I took our boy out, he was calm and happy. Then, I would know he was having fun, that I am doing the right thing for him. What else can I do? I don’t know what else to do. I feel like he’s stuck.”
Just as I had set an arbitrary goal for him to have conversations with ABA, I set a deadline in my head of when I thought time was up. I figured if he wasn’t talking more or having conversations by 15 years old, it probably wasn’t going to happen. In this world of autism, there is a fine line between hope and reality. I needed to accept that this might be it. Though I’ve dreamed and prayed for years that he would really be able to talk to me beyond a couple word responses, I had to be realistic and accept it might not happen. I started to give up hope.
The changes since we’ve started the ABA again have been slow and steady. It’s been seven months, and it’s been a lot of work. ABA must be implemented consistently. Our therapist comes for an hour once a week, but I need to carry on practicing our goals consistently every day—reinforcing the good behavior and ignoring the bad. I didn’t see when we started how we were going to get out of some of these negative behaviors and patterns that had developed. I was as frustrated as my boy gets sometimes, almost ready to bite myself. Little by little, there were small victories. It is so hard to see the forest for the trees when you are in the thick of it.
Our story is nowhere near finished, but we are no longer stuck. Everyday my boy surprises me with something. Independently getting out of the car: YES! A new word or phrase: YES! A note from the teacher saying he is raising his hand and participating in class: YES! I realize now I can’t set goals for him on my clock. I have to do my part, but when he’s ready and the time is right for him, it will happen. If you’re feeling stuck, don’t give up! There’s no age limit on learning and growing.
Diana Romeo is a full-time stay-at-home mother to two kids, a 13-year-old neurotypical girl (read drama queen) and a very sweet 15-year-old boy who has autism. She has a degree in Business Management and has worked in Human Resources. She enjoys reading, writing, cooking, walking, and yoga. She has been published in Exceptional Parent Magazine. She can be reached at firstname.lastname@example.org.
This article was featured in Issue 59 – Top Strategies, Therapies and Treatments for Autism