Pondering What To Share

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I have been invited to participate in parents panel workshop regarding the transition from preschool to Kindergarten specifically when you have a child that is Autistic.  35 parents have registered to attend and they’re all very nervous about navigating the next step.  I remember how it felt for me and my husband leaving the cocoon of what we knew and the supports Johnny had that were working and stepping into the unknown.  Especially when we received the diagnosis of autism and the professionals made it sound that we would be lucky if Johnny was at school with regular children at all.  Just the idea that your child can attend kindergarten which is such a normal every day right of passage for all children and you find yourself full of worry and anxiety.  There are so many acronyms to learn.  You need to learn how to navigate the system. You want to find out what your rights are as a parent and what rights your child has.   You have to find a way to dig deep and find trust in the new group of people Who are going to take over the care and education of your child.

Do they know anything about autism and are you comfortable asking those questions?  I remember going to parent workshops and hearing so many stories about how parents felt that the school there child was going to was “only going through the motions” and just having their special-needs child be in their classroom was a privilege.  It might not be technically true but it’s the impression parents are left with so they feel awkward asking for supports.

I remember for the first two months feeling grateful that every day Johnny was allowed to attend a regular classroom and be with typically developing children.  This was wrong but I was probably carrying baggage from my past as as student in terms of the power relationships at school between teachers and students and then Princpals and parents.  My mind was still not wrapped around the fact that it was his right as a child as a human being to go to school to learn.  To be part of the community to be with all the other peer.  I did not know then it was my right as a parent to make sure that he was being accommodated supports for being in place to ask teachers very tough questions. Instead you want to trust them you want to trust that teachers with years of experience know what they’re doing.

One of things I like to put in thank you cards to teachers is that when we received the diagnosis we soon learned that we wouldn’t be helping Johnny on her own that it would take a community of people all bringing their ideas and helping him move forward.  I like to think that in even small ways that each and every person that Johnny has encountered at school so far in his kindergarten years helped him move forward in some way.  Johnny has learned a lot in his kindergarten years but I’m not sure if he has the same happy memories that I had as little girl or his daddy has about kindergarten years. Johnny is able to talk more and share his ideas and what he’s thinking about and his observations and comments about past events so I’m sure I’ll be able to write about that in the year month to come.   But right now my heart of hearts I feel that kindergarten was not always a happy place for him. He was essentially nonverbal misunderstood having sensory integration regulation challenges and well-meaning adults that thought they knew what they were doing but at the same time did not admit that they needed more knowledge. By the end of his junior kindergarten year he hated school and for the two months of summer break he refused to walk by the school when we went to the park and I had to walk the long way around to avoid him looking at school. He started senior kindergarten with a happy attitude but again but I didn’t feel that his teacher really started to get to know him and understand him until the spring. We found ourselves working closer with all the other team members support staff with the long-term goal of preparing Johnny for grade one.

I think it’s telling that when Johnny does go downstairs to the kindergarten wing of the school he always makes sure he visits one teacher.  Not the kindergarten teachers that taught him in junior and Senior but one that didn’t. What makes her so special?   This kindergarten teacher  made a point of every time she saw him in the hallway or on the street she stopped, smiled, greeted him and tried to have a conversation with him.  He would offer her a smile and try to work through the hallway noise of excited chatter and answer a “no” or a “yes” to her questions then say “bye.”  So imagine her surprise when Johnny came back to school this September to start grade 1 and he went down to visit her and said hello,  asked her how she was,  and then answered a few of her questions in full sentences. She  laster told me she was overjoyed because she’d never heard him speak like that before and she had to pinch herself that she was having a conversation with Johnny as if they’d always done it before. I told her that she actually had in the past because every time she made the effort to be there in the hallway and try to get his attention and interact with him that was a conversation.  Every time he would answer yes or no to her and smile that that was a another conversation but at his level at the time.  Interestingly he doesn’t visit his kindergarten teachers that he had but he will say hi if he runs into them.

When I think about it I am sad that my suspicions are the Johnny doesn’t have the same happy memories of kindergarten that we do. But if this is HIS happy kindergarten memory of one teacher that made a difference in his life then we count it as a success.  Maybe that is one of the points that I need to get across when I’m talking to other parents on Wednesday night. Instead of looking at the big picture of what we think success will be instead break it down like we do when we teach our special needs child a new skill into manageable steps.  Maybe we need to break down what our idea of success is as well and then turn it around and try to picture what that would mean for our child.

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