In my last update on our autism journey, I wrote about how excited we were to start an estimated 15-20 hours a week of in home ABA therapy. I left the doctor’s office with a long list of therapy options to start researching and calling. It was a bit daunting to look at this list of names. Was there one perfect match on this list, just for Lucas? Were there names on there that were of lesser quality businesses, who would do more harm than good or possibly have their own best interests in mind and not my boy’s? In an attempt to sort through the list, I looked to see who was offering in home ABA vs. center- based ABA. The one name that I found that still offered in home was two hours away!!! The rest that claimed to offer in home had since removed that service. Not a single in home option. I was pretty disappointed. Center-based seemed to be our only option. Not knowing where to start, I emailed the list to Lucas’ current therapy team of speech and occupational therapists to look over and see if they could point me in the right direction. I promptly got an email back with a short list of three names. Right away, I emailed, called, and researched all three and decided to tour one of the more promising facilities.
I showed up to tour the facility at 10am with Lucas in tow. The director of operations was kind and showed me a brand new facility that she was obviously very proud of. I witnessed a handful of kids getting one-on-one therapy from some of their team and everyone seemed very caring and attentive. After the tour, we chatted and I agreed to let her know my decision soon. I got on the phone with our care-coordinator and asked her to go ahead and put in a referral for this center. Soon after we had our evaluation there and were shocked to learn that it would be just a short 20-30 minute eval with no parent interview. The next day we received their formal written evaluation and treatment plan via email. They not only had SIXTEEN treatment goals for my 27 month-old son, but recommended 30 HOURS of ABA services per week. Many of the red flags that flew up in my head along the way were silenced by my inner insecurities. Especially in the beginning. After all, we are new to this world of autism and how are we to know what’s normal and what seems off? But I do remember feeling completely floored by the hours.
Feeling the pressure to get Lucas enrolled in services, I told myself that we knew the hours would be long. They have to be this intense for the therapy to really work. So I met them in the middle. Since Lucas still takes a 2-3 hour nap every day, I said that we could have him there from 9am-3pm and that I would see how he did with a much shorter nap on ABA days. I also insisted on him keeping his Tuesday/ Thursday speech and OT schedule in place since he loves his team and I see real progress with these services. So that left Monday, Wednesday, and Friday for him to go to the center. After we signed the treatment plan and sent it back, Tricare quickly approved it and we were set to start right away. So on Monday morning, I sent my two year old son, who has never done anything without me for longer than an hour (YMCA childcare, speech/ OT co-treatments, etc.) with a lunch, a backpack with his extra clothes and diapers, and a hug to do something completely out of his routine, with strangers, for six hours long. Dayna and I stayed for the first hour and observed him behind a glass and asked his board certified behavior analyst (BCBA) about a thousand questions. Then we went out to breakfast at a nearby cafe and I cried when I walked in and saw the coloring pages and crayons. I picked up a chocolate croissant for Lucas.
First Day of ABA
When we picked him up, we were given a “communication log” which each therapist filled out with information like: What did I eat? Bathroom visits? What did I do well with? Where do I need work? etc. It was a little underwhelming since his first week would work on simply “pairing” or building a relationship of trust with one another. But when I saw my son’s face as his therapist carried him out, it was painfully clear that we had over-done it. He was beyond tired. We pushed him too hard and that was made even more apparent as he had a sad meltdown in the car. What was meant to be a one hour nap, turned into two, with him waking at 5pm and not being able to sleep that night until 11pm. I called the center the next day and said that they would have to work with him for just four hours a day instead. He is, after all, only two.
I was still hopeful that Lucas would learn to like his time at the center, but time after time, I picked up a screaming or overtired kid. The meltdowns post- therapy started to get worse. The tantrums became more aggressive. Dayna’s arms were (still are) covered in welts and bruises from him biting. He was hitting, scratching, pinching, kicking. Soon we were seeing a different boy. He was generally quite happy before starting therapy. Now our days were feeling like one long tantrum. He woke up exhausted. He went to therapy exhausted. He came home exhausted AND he was dropping naps. For those of you who don’t know, it is recommended that a child Lucas’ age still be getting 12 hours of sleep on average. A wired child, is a tired child. I have protected Lucas’ sleep schedule since day ONE. I have always considered it a great gift to be able to give to him: a healthy relationship with SLEEP. His rhythm is so important. Once his sleep goes, it trickles down into every detail of our lives. Once his therapist carried him out ASLEEP at pick up!!! This was feeling like daycare. Another time they told me that he fell asleep during an activity so they let him “nap” for 10 minutes and then he was “fine.” My son has never taken a 10 minute nap in his life. Ridiculous. And I know he was not fine. Not only was he not sleeping, but now his lunch box was coming back to me, practically untouched. His communication log would say: I ate: Chips or I ate: cookies. After some digging, I found out that he was eating in a large enrichment room with older kids. He was surrounded by toys and exciting activities. He was also surrounded by other’s lunches, which probably looked enticing. At home, I keep his environment very focused during mealtimes and I am persistent. Now that he was coming home famished, his bowels were all messed up. I was having to go in and change a poopy diaper at 10:30 pm on multiple occasions. Our days had zero semblance of normalcy. I woke up each morning questioning my decision to put him in ABA and it was chipping away at my confidence and my sanity.