Introducing Tigger
“My son”
I’ve been talking a lot about “my son, my son, my son”- I think it is time to give him a name. I will call him Tigger, because he loves Tigger, he bounces like Tigger, and he likes to dress up in a Tigger costume every so often.
I am not an expert in any way on Autism Spectrum Disorder, but I am the foremost expert on my Tigger. Everything I have done up to this point has trained and prepared me to be his Mom and advocate. My choice to be an educator, then choosing to teach preschool, learning from some of the best teachers, and marrying a wonderful man who works very hard so I can stay at home and work very hard with our kids.
This is how I feel about Autism Spectrum Disorder. I don’t feel like it is a “disorder.” I love how Tigger’s brain works. He is so creative, happy, fun-loving, affectionate, curious, focused, kind, and gentle. He is smart- oh so smart, and his memory is unbelievable. Cognitively he is advanced or at least on par with his peers. When I talk about him getting therapy and intervention, it is not because I think that he is broken and needs to be fixed. It is because there are things that to many of us are just natural, like having a conversation, interacting with other people, building relationships, looking people in the eye, and understanding what our bodies need to do to perform ordinary tasks. We don’t have to think too much about these things, because of the way our brains work. Tigger needs to learn how to do these things in a way that he can make sense to him and use those techniques to reach his goals. At this time, his number one goal is to make a friend. I also want him to have therapy to help him deal with his anxiety. I don’t expect that he will ever “get over” his fears, but I hope to help him find a way to control his anxiety and calm himself in the face of his fears.
I knew in the NICU when the doctor told us that they were going to have to tube feed Tigger, because he was not able to suck and swallow, that this was a big deal. Not just for the time that we were in the hospital, but for a very long time. They told us that there was nothing physically wrong with him, but that he just didn’t understand how to do those things together. Sucking and swallowing is an instinct for most people. How did he not just “know how to do it.”
When we took him to an Occupational Therapist at 22 months because he was not chewing and swallowing, the therapist told us the same thing. There is nothing physically wrong with him, but he is just “wired differently.” I had heard that term before relating to mentally “disabled” people and all the alarms went off in my head. I immediately called our pediatrician and asked her what “wired differently” meant for Tigger. She looked into the therapist notes and did not see anything alarming so she told me not to worry about it and that my son was just developing at “his own pace.” That is what I wanted to believe, so I just hung onto that- really, really tightly.
We got his speech and hearing tested when he was around two, and everything came back within the normal range. His speech was in the 30th percentile- low, but still normal. In my teaching experience I had seen so many children who seemed like they may have some delay, but throughout the school year they would almost always catch up to their peers. Tigger was still really young and I felt like I knew that he was delayed, but still within the range of “normal.” I didn’t want to be one of those Moms that worried and researched everything until you had yourself believing your child had this disease, or that delay, or… autism.
I didn’t understand autism, and frankly I didn’t want to. I did zero research on the topic. I held onto this belief that autistic children were not affectionate and did have emotions. My son was extremely affectionate and so happy, he couldn’t possibly have autism. Sure he flapped his arms when he was excited or interested or happy. He couldn’t answer questions I asked him unless they were about Thomas the Train. He couldn’t tell me why he woke up crying in the middle of the night. He couldn’t tell me what happened if he got hurt and I didn’t see it. At playdates, if other children hit him or took something from him he would just walk away and do something else near them. At Little Gym, if he got far away from me and couldn’t visually find me again, he would look right passed me and not be able pick me out of the crowd of Moms. When we had to use the windshield wipers he cried in terror like we were pulling him apart limb by limb. On a play structure he never watched where he was going like his head was in the clouds. He didn’t really seem to know how to navigate his way safely through play structures. I felt like I always had to go on it with him, so he didn’t plummet off the side or fall down the stairs. I knew something was off, but honestly I thought he would “catch up” to other kids. Keep in mind, he was under 3, I felt like he had a lot of time to do his catching up.
When I learned that he, in fact, is on the Autism Spectrum, I felt so horrible that I had not figured it out earlier and gotten him into early intervention. But as I met the various therapists and Special Education Specialists, I kept hearing the same thing over and over. The things I had been doing with him were similar to what they do in therapy and special education classes. I entered his world and learned everything about what interested him- so we could communicate on his level and I could pull him little by little into our world, using Thomas of course. I prepared him for every event by reading stories related to it and looking at youtube videos of children doing similar things, and I talked to him in detail about things that we would do so that he would feel prepared. We had a routine and we stuck to it. I used positive discipline, distraction, and incentives. When he was upset or throwing a fit, I acknowledged his feeling and gave him comfort, but did not give in when he was making bad choices. I tried to stay as consistent as possible and choose my battles. I am so thankful for all my experiences as a teacher, because they really prepared me to be the best Mom I could be for Tigger. All these things I was doing were just part of what I did as a teacher, they were second nature, and I do feel that because of them, my son is progressing so quickly with the added support of ABA therapy.
When we first got the diagnosis, the doctor told us that with early intervention, Tigger could have the ability to interact in a typical manner with his peers within 5-7 years. I can see that now. It seems like if things keep going the way they are that we can reach that… But I never know. He loves people and wants friends, I can’t imagine how happy we will all be when he makes and keeps his first real friend.
Mama never knows- I never knew… a lot of things… but I’m learning.
