January 2103 brought continued behavior challenges at school. Home continued to improve. That was a departure from the same time the previous year. We were 11 months into 5-6 day a week therapy. Mickey was becoming more and more aware of his feelings and identifying them. He could tell you nine times out of ten what he should have done differently, after a bad choice was made. That was huge. Twelve months before, he couldn’t do that one time out of ten. The therapy was working. Daycare was better too. But, the school setting was becoming an issue. We called an emergency IEP meeting to discuss a plan.
This would be the toughest IEP meeting I have had to date. One note here, our school is amazing. For the most part, our county is too. Our average IEP meeting for Mickey has been about 4 hours. They are very collaborative, his therapists have been invited to attend as well as his CSI. When we were having an issue in PE, we figured out that it was because he didn’t like to try new things in front of other people. We remedied this by having the PE teacher email the weekly plan so that we could preview the activity at home (jumping rope, dribbling a basketball, etc). When he was chewing his shirt, chewelry was suggested. When he started eloping from the classroom we found him a spot he was allowed to go in the room away from everyone. These meetings were stressful, but always a team effort. This one was different, it was our third of the year and we all knew the end was in sight for him at this school.
We tried. The school tried, but they weren’t equipped to deal with Mickey. His safety and the safety of others was becoming harder to manage. Other schools in the county were and we made the decision to make the move. Not a person in the room (and there were 9 of us) had a dry eye. Tears were shed, the principal and head of special ed were heartbroken. Nobody would be more heartbroken than Mickey himself, but I was a very close second. He was to move to a self contained classroom at another school about 15 minutes away.
He started this school mid January. The teacher there was great. The administration, nurse and staff in the office were not. Coming from our warm and fuzzy little school to this place was a rude awakening of the difference in schools from one to another within the same county. The student body was the same size, but the building was newer, larger and colder in feel. Mickey’s class was removed from the other students, though he would be in general education for music, art, PE and technology, as behavior permitted.
There were challenges with this program, but the advantages were obvious too. First of all, he seemed less on edge. The smaller setting was perfect for him – less distractions, less sensory issues, Second, his grades improved. From nearly zero progress educationally – he still had less than 30 sight words and was still working on the 3rd month of the kindergarten reading program, he started to catch up. We hung sight words all over the house, we focused on 5 a week, but they started to take less than 3 days for him to get them. At school, without the behavior challenges impeding the the learning process, things started to click. By the end of first grade he would be reading at grade level, so he completed the entire kindergarten and first grade reading program in 5 months. I was ecstatic. His teachers kept saying how bright he was and that he had a real aptitude for math. His class housed 5 kids total and he was the only 1st grader, there was one kindergartner and three 2nd graders. He was doing their math with them.
His handwriting was abysmal and there were questions as to whether his reading comprehension was good, but he was reading, he was writing, and he was participating. There were behavior issues, for sure. But, this setting proved to be less stimulating for him and they were less frequent and certainly no where near as volatile as they had been. I began to have hope. True hope for his future. He wasn’t the child with a low IQ that wasn’t ever going to be able to learn. As we got behavior under control we began to see his potential. We continued with our therapy.
One other thing that both Minnie and Mickey worked on was a relationship with each other. They told Matt, our family therapist that we saw once a week, that they wanted to improve their relationship (or as they phrased it – learn to play together). Truthfully, Mickey needed to learn to play with anyone. One common note from his teachers is that he would play in parallel, but never really with another child. I saw this at daycare and the rare birthday party or event with other kids. He would play somewhat with children much older or much younger but never with peers.
I had chosen to adopt siblings because I had hoped it would make the adjustment period easier because they had each other. My children didn’t have a relationship – they were two kids who lived in the same house, but only on the rarest of occasions did they voluntarily interact. Part of the issue was that Mickey wasn’t capable of it, part was that Mickey always clung to the nearest adult. Even over a year after placement, he couldn’t stand to be out of my eye line. He would pee without an audience but he talked to you the whole time and never closed the door (that was progress). His separation anxiety was still significant. He also loved almost every adult that came into his life, so when he was away from me (school, my parent’s, daycare, with Uncle, etc) he transferred that clingy behavior to them. He preferred to be touching. He had no personal space boundaries and would sit next to you and rub your arm, or his teachers arm, etc. He was a sensory seeker that constantly needed input.
We discovered that weighted blankets and the weighted teddy bear at school were valuable resources. He loved the pea pod which squeezed him. He chewed his fingers, constantly complained of being hungry because it was a comfort to him (crunchy or chewy were soothing), etc. He also started to show perseverations. At the new school during a break he was introduced to Word Girl. If you aren’t familiar, she is a superhero that teaches vocabulary. What could be wrong with that? Well, he became convinced that if I would buy him magic shampoo, he could become her. He talked about her every waking minute. He wouldn’t watch anything else, he became upset when classmates would ask for a different video during breaks. This escalated for months. Finally, classmates refused to play with him or talk to him because they didn’t want to play Word Girl or talk about her. I asked him why he couldn’t stop and he said “my brain won’t stop thinking about her, no matter how hard I try”. We had to cut all Word Girl from his life – at school, daycare and work we banned it. It took two months for the talk to stop but it eventually did.
Every therapist and teacher that worked with Mickey were shocked that there wasn’t an Autism Spectrum Diagnosis. Now that the seemingly unexplained tantrums had come to an end, it was more than obvious that they weren’t unexplained. They came when routine was broken, when he was over stimulated, or frustrated. They weren’t random. Bipolar became less of a concern and a spectrum diagnosis was assumed by all who dealt with him. In many ways it was classic autism – anxiety, compulsive, lack of ability to regulate, some ocd tendencies, lack of self awareness, lack of social skills, lack of eye contact and maybe most telling a complete lack understanding of social cues, vocal tone and facial expressions.
It was becoming more and more obvious that we were dealing with Aspergers at the minimum. We couldn’t get another psychological eval until December, so we just moved ahead with an assumption of diagnosis. The school year wrapped without another incident that required him to be restrained.
We even moved to a bigger house in February. The move went off without a hitch and other than some insecurities that the kids’ displayed about what happens to your stuff when you move (both kids associated moving with leaving things behind because that was their only experience. They came to me with a paper box of their belongings, a couple of favorite toys and a few articles of clothing). They didn’t understand until we got to our new home.
We also discovered that routine, while important, had to be changed on the weekends. We got in the habit of going to the grocery store at 6am on Saturday, because it was easiest on Mickey. But, we didn’t go one weekend and it bothered him for a week and we saw behavior regression. So, we learned that weekday routines needed to be as regular as possible and sleep and wake up times needed to be consistent on the weekends, but we worked hard to vary weekend routines and get him used to those changes.
The kids started to beg to go to Disney. They were watching their friends go. They had been asking since I brought them home. We weren’t ready, but I started to think it might be a possibility. A year ago, I would have said you were crazy. I started to have hope that it might be possible, someday. I started to think that some degree of “normal” might be possible.
Around the time of our first adoption day celebration in May – a nice dinner after Minnie’s ballet recital with my parents and brother at the same restaurant we celebrated at a year prior, we were all settling in. School was going well, and he was scheduled to stay there for the next year. Minnie was wrapping up pre-k and doing awesome. The therapists were cutting us to four days a week – 1 day with the family therapist, one with Mickey’s individual therapist, and two days with the CSI. This was down from 6 days a week.