for Ramona

I have a friend who recently blogged about her frustrations with conflicting opinions about her son. I wrote this reply and it was too long for blogger's comment field. But I think I said some stuff in it that really needs to be said. I've been wanting to start a blog for my own thoughts for some time, so I decided this would be the inaugural post. I'm leaving it how it was written, as a response to her, because I don't want to mess with the honesty of it. You can read her post here for background, but the gist is that her sons teacher doesn't agree with her private psychologists assessment, and she is also confused about conflicting opinions about a behavioural verses sensory approach to treatment. SO here goes ...


I have had so many similar struggles to your own, and I know how incredibly hard it is. We are currently in the process of Cs 5th school placement deteriorating. He's 10. 5 schools already. It is so hard to watch.

I had a really good sit down with someone at the school board, and she was really candid with me. She told me that the entire sensory approach is so new, and so different from what teachers and behaviour consultants have been taught for so long, that they are all looking really askance at it still - it looks a bit like quackery. And while I appreciated her being so honest, where so many other professionals just talk down to me when I suggest a sensory approach, I couldn't help but feel extremely discouraged. I am looking for the perfect school placement for my son with desperate sensory needs in a system that on the whole does not believe his sensory needs are as important as I know in my heart they are. There may be the occasional teacher or aid scattered through the district who 'gets it', but most won't and many will look down on me for suggesting it. It's a old science/new science transition - like when we discovered the world was actually round - people resist it and vilify it. Its exciting in a way because there is new knowledge that we know will help kids for generations - but it's an awful time to have that knowledge and want to apply it when so many professionals don't believe it's true.

I just don't know what to do. I am investigating a private school though that will cripple us financially. I am also considering homeschooling, though I'd also have to leave my job for that which would be really hard on us too. I know I could do it, there is a very strong support network in our city for families with kids on the spectrum so I'd be able to get out and interact socially with him, plus participate in lots of programs in our community centers. But I just feel so overwhelmed by the idea. And exhausted.

I have to say, if your private psychologist diagnosed Sam, chances are EXTREMELY high that he is right. We had a similar path with Coram - the school took a behavioural approach to him (and still does) and actually refused to assess him, because they were so convinced it was a behavioural problem. I saw a little boy who would NEVER make a choice to behave in such a way as to lose privilege after privilege, and face consequence after consequence. It made no sense to me. I had been told by our mental health worker that there was no chance Chad Autism, but we were both convinced something like a profound learning disability was getting in the way of him behaving the way the teachers expected him to behave. So we went for a private assessment, and I was stunned to get the Autism diagnosis. But I trusted the psychologist, did some research, and followed my gut. And the more I read, the more I knew it fit.

That was 5 years ago. And I will say this - when a grade kindergartener is behaving like a preschooler, you maybe raise an eyebrow, or teachers maybe raise a few concerns and suggest stronger discipline needs to be in place, and people start saying things like 'he'll catch up.' But its the trained psychologists who can recognize if there truly is a problem. Because 5 years later the gap between C's physical and emotional age has widened, his behaviour is still similar at times to a preschooler, and since hes almost 5 feet tall and in grade 5, we all know beyond a shadow of a doubt that the diagnosis was right.

Preschool is a pretty controlled environment. No teacher who only sees a child in that environment should feel themselves qualified to assess him. Not to mention the years of training and experience they DON'T have that the psychologist does have. Even the school psychologists don't have the experience that the private one does, because they see many different kids with different needs. Private psychologists often have a specialty - we chose on with a specialty to recognize learning disorders. And while some say that specialties can lead to bias, it is my opinion that the kind of focuses experience and research you get from specializing in one thing is invaluable.

So I guess I'm saying that I think it is laughable that a preschool teacher and a school psychologist think that they know better than a private psychologist.

But I will also say this: this is a step in the journey. People will question you every step of the way. I have a principal now who despite all of this is still insisting that a note made in C's file in Kindergarten before he was assessed is more correct than his diagnosis. Not everyone understands that you as the parent are the EXPERT here. They will look down at you, judge you, manipulate and belittle you. And it's all to suite their own agenda. You may go a year or two without it, but it will come back when a new person comes into the picture, so be prepared, be watchful, and know that you are the expert and they need to be listening to YOU not the other way around. This isn't something I knew a couple of years ago, but it comes with time. I think we are so used to teachers and principals and doctors being the authority figures in our lives it is hard to see them any other way. Just keep reminding yourself - you are the expert, you know your child and you know his rights and your rights. Keep pushing, keep fighting, keep standing up for him even when it makes you shake afterward.

It's all overwhelming, and sometimes when I sit and reflect on it I wonder how anyone copes. But we do. We need to have our cry sometimes, we need to leave he house a mess sometimes (or most of the times in my case) but we do it. And we find extraordinary beauty in the little things. Like a smile. Or that shiny 'tuned in' excited look in our child's eye that we see so rarely but other parents take for granted. And we find people in our community, both online and offline, who understand and support us. And on our good days we reach out and support other people. And sometimes when another mom is in a store, on their knees in a spilled box of cereal, holding a child who is screaming with his hands over his ears, looking embarrassed as other people walk by and glare, we can say to her, 'It's OK. I understand. You are doing a great job.'