It’s World Autism Awareness Day and this is Autism and acceptance to me and my family
I confess that there were times I was not sure if my Autistic child understood what was happening? When a child is non-verbal and isn’t acting the expected way that a child would about something, many times there is an assumption that the child is lacking the ability to understand. I was guilty of this when he was younger and non-verbal and couldn’t tell me or show me what was on his mind . One of the things I had to let go of when Johnny couldn’t talk was he wasn’t going to act the way I would expect him to or like a what others thought a typcial child would. He would act like Johnny and the faster I accepted this the better our life would be. Does it frustrate me? Yes, but it is what it is.
The big thing is he WAS there…present and taking everything in even when I thought he wasn’t. He was never in his “own world” as so many people would describe. He was never NOT paying attention. Every moment, every little thing and every big thing, he catalogued and remembered so he could take it out and share with me another day. When I took a step back and tried to really look at what he was so interested in then things started to become clearer. If I wanted to understand my son I needed to stop forcing him to be the way I thought he should be, but let him show me who he is.
I would just start copying what he was doing whether it was “blowing raspberries” or lining up cars or blocks on the floor. I would not interrupt him but I would just play along side him. He would sneak looks at me and try to manoeuvre his body to block me from entering his play, but after many attempts he started accepting me playing like this. I was not going to force him to play appropriately the way others wanted him to do. Once he allowed me to copy him and play like this that was when I started doing my own thing and see what he could do. I made the cars make sounds by making funny voices or put drivers in the cars. Sometimes he would watch and other times he would take the people away from me, but that was okay. We were interacting with each other and paying attention to each other’s play. Johnny was very present and knew everything that was happening around him. He just had his own way of playing with things and I needed to accept this and then show him other ways so that he could learn to be more flexible and accepting of new but different ways. When you think about it how can we get an Autistic child to do things differently and move out of their comfort zone, if we are not ready to move out of ours and be more flexible in our thinking?
Fast forward, three years later and Johnny is now talking a lot and sharing his memories with me.
When Johnny says “remember Mommy when I did this when I was little” I always turn and look at him with my eyes bugging out. Another moment from the past when he could not communicate with me that he wants to share with me now. Then like a mad woman who is starved I quickly ask him a bunch of questions and then slap my hand over my mouth and remind myself to slow down and ask slower to give him a chance to process my questions. He WAS there and he WAS taking everything in.
“Oh my God that’s why you tossed everything off the table in senior kindergarten room. Oh that’s why you couldn’t go into the gymnasium for gym class in kindergarten years. Oh that’s why you did that. We really didn’t understand you did we.”
“Mommy….yessss….it was so very hard.”
One of the big differences with Johnny being able to talk is that he verbally shows us and confirms to us that he tunes in very differently. Instead of looking elsewhere when we talk he literally interrupts my flow of conversation and attempts to tell me what is important to him at that moment or tells me “I don’t want to talk about that Mommy.” I double check and ask him what we were talking about that he doesn’t want to talk about and he never gets it wrong. He is ALWAYS paying attention. Johnny’s big challenge is that he needs to do a better job of showing he’s paying attention. I find this part hard but it is the reality at school and was in his IEP as a set goal since Junior Kindergarten. Luckily this year the special education teacher agreed that there are better goals to be set for him that are more meaningful for Johnny’s development and he is not at school to re-assure teachers but to learn.
So as parents, we are trying to figure out how to change the mindset of our child’s school and community and ask some hard questions. Are we trying to change the child and get them to appear to or seem typical? At a recent meeting about our son’s progress with school board staff and teachers present I heard someone say “wow that is so like a typical child. He is doing so well” after a teacher related a story about my son making friends at school. We want our son to be a child at school first and foremost who happens to have Autism too, but we were not sure if what was really meant to be said. He used to act so differently before and now look at him. He seems like a normal child. So many well meaning people who want Johnny to move forward but I am still getting a handle of what they perceive as Johnny’s success should look like. Sometimes it feels like they want him to fit in and learn how to be like any other student in the classroom and it worries me about how he will accept who he is in the future. Is he being taught that if he doesn’t act a certain way that he will not be accepted? The other day he told a speech pathologist that was working with him at school, “please don’t tell Mrs ******** this. I will work harder” which left the SLP speechless because he was working so hard and doing really good.
Our ongoing challenge as parents is to advocate hard and remind folks that different is not less, Johnny is always paying attention and shouldn’t have to show you that he is all the time because other children are not always showing this either. Wouldn’t it be better for all children if we just accepted them as the unique individuals that they are and meet them halfway and accept them?