“Don’t worry, he will get better”
“Don’t worry–he will be fine”
If I had a quarter for every person who has told me this in regards to my son, I would be a very rich woman.
My 6-year-old is severely autistic. I knew of his diagnosis even before the pediatrician did. “Don’t worry–he’s just on ‘Keegan time’.” That was the one his pediatrician used to say every time I brought up a concern about his developmental delays.
I have always had the best therapists for my son, since he was a little over 2 years old. At least, what I consider the best. Ones who would tell me his potential, and tell me that he will be a very productive member of society when he gets older, and that he will get better. They would constantly tell me how smart he was. Is this a bad thing to be told? Not really, but what happens is that you sit and wait…..and wait….and wait….until you realize you have been waiting for 4 years and have not seen close to the progress that you were told you would see.
I have been lucky to have these very loving therapists and teachers for my son, and I guess I took that for granted a little. They would tell me things like, “He told me he wanted (fill in the blank)”, or “he said ____”. They seemed to understand my non-verbal son better than I did. A lot of the time I would just nod my head and smile, knowing he didn’t really say that, but thought it was sweet that they felt like they were getting through to him.
Then I put him in public school and the tables turned a bit. Sure, the teachers loved him because he’s hard not to love. He’s just so sweet and cute that you can’t seem to get enough of him (yes, I’m biased). But, they also recognized how hard it was to teach him, and made it very clear to me how hard it was in a big way. Hard to teach because he lacks motivation for most things, making it difficult to work towards a goal using a reward system. He also has constant stimming behaviors, which has negatively impacted his learning, in my opinion, for the last 3 years.
I was recently told by the current school that Keegan was not appropriate for the class, and that they wanted to transfer him to another class/school. Their argument was that it took too much time away from the other students to constantly redirect Keegan (keep in mind there is only 3 other kids in the class, along with a teacher AND an aide). They also told me that they felt they weren’t doing the appropriate job for Keegan because while teaching a lesson, Keegan would be stimming quietly in the corner away from the class. And in no uncertain terms they also told me that he is basically not capable of progress, and that he appears unable to understand anything that is told to him.
What they didn’t realize, and I guess I didn’t either, is that he is listening and understanding. It took someone not believing in my son for the first time for me to truly believe in him for the first time. I mean, I always believed in my son and what he was capable of, but after 4 years of silence and incorrect responses, you start to wonder if he is actually that cognitively disabled. For instance, he points to the ladder when he is asked to point to the swing. He points to the red circle when he is asked to point to the blue square. I know that he actually knows what a blue square is because he has shown me and said exactly what a blue square was when he was much higher functioning, before his deep regression into autism-land. But since his regression started, and the correct responses began to dissipate, “incorrect” was his normal, and I got into a routine of the inability to think outside of the box. The inability to believe there is more going on in that little brain of his than he is able to communicate.
I understand that the public school has a job to do, and that they can only go off of the actual data, and how he directly responds to questions. But I feel that he does know, but the autism blocks him from responding appropriately.
And there I was two months ago in his IEP meeting trying my best to argue why I wanted him to stay in his class of low ratio, and avoid an upheaval of emotions from my son in the transfer to another school. I was actually fighting to keep him in a class that he was not wanted. A class whose teacher told me point-blank that she does not feel she can teach my son. She feels he would be better off in the 10/3 ratio (kids/adults) classroom where they will focus on one letter or one color nonstop everyday. And bonus…….there’s a kid in the projected class who bites.
After ‘losing’ in the IEP meeting, I came home feeling very defeated. I realized how hard it really was to advocate for someone who didn’t have a voice. Then out of nowhere I got a phone call that I had actually been waiting almost two years for. A call from a private school that I REALLY wanted Keegan to get into, but are very selective in who they chose. They wanted Keegan to come in and do some trial days to see if he blended with a class that had an opening. One of the first things that the director told me on the phone was that they “presume competence”. I knew what this meant, but I didn’t know to what extent this would apply to Keegan.
I knew on his first trial-day that this was where I wanted Keegan, and I could see the presumption of competence in full effect. When they brought him to the car they couldn’t stop talking about how smart he was. They gave me more feedback and papers on the things he did that day than I had ever received in the 5 months he was at public school. I got the contract in the mail yesterday that he was accepted and will be starting at this school next month.
I will leave you with some helpful feedback on presuming competence, taken from Emma’s Hope Book blog:
“Assume your child is aware and able to understand even though they may not show this to you in a way that you are able to recognize or understand. Presumptions of competence means treating the other person with respect and as an equal without pity or infantilization. To presume incompetence is to actively do damage.”
If only everyone would do this………
3 thoughts on “Presuming Competence in Autism”
You know that I know exactly how you feel. Gabe is showing so many more signs of his ability to retain and reuse information than ever before! It takes the right people; people who want to see the ability affected by the disability and have the burning desire to step forward and do something about it! You are a wonderful Mother and advocate for K. He’s one blessed kiddo! ❤
Mom who will never give up !!!
Eye opening…disappointing …
Hope Keegan thrives in his new environment!