Last week Aden completed post-post testing, the final stage of the Early Achievements Autism Speaks (EAAS) study. In the past, testing hasn’t been a pleasant experience for either of us. Usually Aden doesn’t want to participate and because of this, I suffer high levels of stress.
I hate tests. I remember my college days; I would rather write a 15-page literature review than take a test. The studying, the anxiety- it was all a bit unnerving. What if I didn’t feel well on test day? Or something was distracting me? Whatever it was I didn’t perform as well as I had hoped. Does that mean showing up for class, taking good notes, and studying was all for nothing? Like I said, I hate tests.
Aden and Alex have endured testing since 15 months: ADOS, Mullen, you name it. All tests that calculate just how far behind my children are. Yes, I know they are subjective and it isn’t the end all, be all. I shouldn’t put too much weight on the results. Unfortunately, I do. Because in the real world, the grade you receive is what matters. No one cares that you worked hard or you were sick on test day or didn’t study the right material. Nope, not in the real world.
This is exactly what I’ve encountered in the past with Aden. I’ve seen him complete certain tasks but when he is unable to complete tasks assigned during testing, it reflects negatively on him. And it leaves me completely devastated. He is learning, he is doing, but he is often unable to perform when necessary, especially during testing situations. That is, until post-post testing.
On day 1 of 2, we entered the exam room. Different toys were scattered around the room. First, Aden had to play by himself for 3 minutes and then I had to engage him for the next 7 minutes. Aden is often hard to engage and would much rather do what Aden wants to do. It wasn’t easy but I finally had some luck reading him a book. I used the strategies I was taught during parent training. It turns out, book reading is my strong suit.
After 10 minutes the psychologist entered the room. She told me I could stay or go. Since Jon had watched Aden during his last post-testing with the SEED study, I decided to stay. That’s when things turned ugly. Aden clearly did not want to be there. He did not want to participate. Since Aden doesn’t have the language to express himself, he acts out physically instead. I watched as he smacked and kicked the psychologist. Jon and I do not see these behaviors at home. It was difficult to watch. I tried to keep it together but within seconds the flood gates were open. I noticed each time he would hit her, he would look at me. Attention! He wanted my attention. I tried to remain emotionless, which of course was impossible given the situation. But I knew what I needed to do: GET OUT OF THE ROOM! As soon as I had my chance, I did just that. That’s when things got better.
With Alex in the other room, I couldn’t observe the entire time. The moments I could sneak a peek, he was doing really well. He was completing tasks and answering questions. Some things I had never seen him do. Wow.
Day 2 of 2 was even better. I didn’t even attempt to go into the room. Behind the glass, I watched him complete what I call “milestone tasks” which includes, sorting shapes, stacking blocks, arranging nesting cups, and completing a puzzle- all with flying colors. This is my Aden. This is his full potential and I watched as it was being unlocked.
In one play scenario, I watched as he used a bristle block as a piece of food = substitution! Aden has always had trouble with substitution and to watch him do it effortlessly; I was beyond happy. Here’s the finale, the best part of my day: Aden was given four miniature dolls, three beds, 2 chairs, and bedding (pillows, blankets). I watched as Aden put each of the dolls into a bed, until there was one doll left with two chairs. I thought to myself…I wonder if he will sit the doll in the chair. To me, this exercise was on functional play. Does he know the appropriate use for the bed and chairs? To my surprise, Aden pushed the chairs together making a fourth bed, he then placed the final doll in the bed and covered her up and made a “shhh” sound. I couldn’t believe my eyes…which were of course quickly filling up with happy tears. One of Aden’s teachers from the study was in the observation room at the time. We were both overjoyed and emotional. I gave her a big hug and thanked her again for everything. Of course she didn’t want to take the credit but I know better. Without that study and those teachers, Aden wouldn’t be where he is today and neither would I: On Cloud Nine. P.S. When titling this post, I actually googled the term “On cloud nine”…I’ve used it plenty of times in my life but I wanted to know where it originated from. I came across a lot of different explanations. This was my favorite, “Level Nine is the very highest cumulonimbus, which can reach 30,000 or 40,000 feet and appears as glorious white mountains in the sky. So if you were on cloud nine you would be at the very peak of existence”…yeah, that’s exactly how I felt that day.