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January 19, 2009

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Sue

Hi,
Got misty eyed just reading it. Makes me think that I really need plan for ways for my student's parents to network in both formal and relaxed settings.In the past I have had parents say to me 'I don't want to mix with them socially, the only thing we have in common is a kid with ASD!" However, if you are having 'one of those days' another Autism Mum/Dad/ Sibling is probably the only other person that is going to 'get it in short hand', so those connections are so important. Thanks for the reminder.

Lisa Moon

Great thoughts about connection which really resonate with me on a few different levels.
As a mum to a boy who had tended to be labelled ADHD by some, but I can clearly see ASD traits (some believe ADHD to be part of that spectrum; others protest mightily, so I won't get into that) in him - and many ADULTS I know, too.
I often think that labelling can be more hurtful than helpful (I'm thinking of segregation and bullying in schools here), but it cal also serve to make those connections you speak of, as they truly are so important.
When I was called to a meeting at my son's school regarding his behaviour when he was in grade 3 or so, I was met by about 6 different professionals, including his teachers, the principal and vice-principal (!) all of whom turned to me - one actually asking me what *I* expected *them* to do about his needs!
Um, I kinda expected that those half-dozen 'professionals' with surely a dozen or more degrees amongst them, might have useful suggestions and resources I might turn to.
I got nothing, except the message that my son was some kind of unique freak, a problem they'd apparently never encountered, nor appreciated.
I was lucky to find a grass-roots, parent-run support group for kids, loosely-termed as having 'invisible disabilities' including ASD, ADHD, LDs, etc., etc. And like your story, it gave me the connection that I was definitely NOT alone, my son (which I KNEW) was NOT a freak and in fact, was having comparatively minor problems with school, etc.
Had I not had this support, I don't know what would become of us. This support helped me determine my further schooling/career direction, taught me advocacy and gave me so much knowledge about diversity, giving me my current view of a brilliant spectrum of human minds - all of which have so much to give.

Sue

I am a Special Education teacher, and don't have a child with ASD or ADHD, so I know that I couldn't possibly even begin to understand what parents go through. That's why I spend lots of time reading parent blogs. I really want to understand and respond in a way that is most supportive of the students and their families.
I do spend the majority of my week with 10 kids ( at a time) with ASD and other co-morbid issues. I am so sorry to hear that so many parents have dreadful experiences with the schooling system. The more blogs I read the more this appears to be the case.
Over the years I have come to understand that the people with degrees are not really the experts at all. Mums and dads are the specialists regarding their own children. I am so pleased that so many parents are now networking and learning how to advocate for their children. I know that it's a frustrating and time consuming process that swollows up time that you could be bettter spent 'doing life' with your family, and I wish that it wasn't necessary!
I have shed a lot of tears with mums and dads over the years. And loads of tears in private, at the end of a day, that has been spent pushing through challenging behaviours- over and over again.
I wish I had all the answers but every precious child is so unique that the answers always seem to start with 'Let's try..' and I have stuffed up more times than I would like to admit. But, I learn from my mistakes.
The truth is I love my job and I would do it for free if they couldn't pay me.

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