In December of 2016, Luca was diagnosed with Autism. He met with a physiatrist that is well known in our area. To get an appointment, I had to call weekly and enlisted the help of the a few of the therapists on Luca’s team who had connections with her to try to help to get him in. Finally, it all paid off and Luca got his appointment several months later!
After evaluating Luca, Dr. Kenn sat with me and asked if anyone ever mentioned that Luca might be autistic. I knew he was at risk of developing autism due to the medical history, but I had spoken to some of the therapists on his team about this from time to time and it wasn’t anything any of them were concerned with. She told gave me a list of tools used to identify and diagnose autism and reviewed each point with me and explained how she felt Luca fit. It all made sense, but I was a mess. My poor boy had already been diagnosed with a genetic disorder that I knew nothing about, developed epilepsy and now had the autism diagnosis to go with it. I thought that he had to been the most unlucky child who could never catch a break! This lasted for about a day and then I actually became happy that we had this diagnosis since autism is a term that everyone knows and understands and I knew it will qualify him for more assistance. It would be MUCH easier to just tell people Luca was autistic rather than to explain his rare genetic disorder than no one has ever heard of (including myself before he was diagnosed).
The doctor started to explain a little more about autism (which is a secondary diagnosis him) and recommended ABA (Applied Behavior Analysis) therapy since she thought that it was very likely Luca would benefit from it. I didn’t even research clinics, I immediately called the one that she recommended and begged them to find some space for Luca since I trusted her to guide me to the best option for us. As luck would have it, Luca’s diagnosis came right as the clinic was working on the schedule for the new year and were able to squeeze Luca in for 18 hours of therapy a week starting right away. Keep in mind that Luca already had 5 hours of different types of therapy on top of this, so he was BUSY!
Going back to ABA therapy, this therapy was working wonders with Luca. He started in January 2017 and has become a completely different child since. ABA uses positive reinforcement for completely the tasks or behaviors being taught. In Luca’s case, any time he does something he therapists on working with, he gets the reward of watching the iPad for a minute or two. Self feeding is huge area of struggle for Luca, but with the help of ABA, Luca can now pick up and put in his month. Finally! We started small with this. For example, if he was able to pick one piece of food from his tray, he could watch the iPad for 30 seconds. As he mastered that task, it increased to more bites. Now, we’re at a place where Luca keeps the iPad on for his entire meal (usually Mickey Mouse Clubhouse), but he picks up everything on his tray and feeds himself! Sometimes he needs some nudging to pick up since he does easily get lost in his shows, but this has been huge relief for our family now that we have a baby we also have to feed the same time. More on ABA later and all of Luca’s progress!
For now, we are enterally grateful for the autism diagnosis since it has opened the door to ABA for us. It may not work as wonderfully for all kids, but for Luca, it’s been HUGE!