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Archive for November, 2010

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Finally!  After many frustrating years of piecing together the puzzle, after dozens of specialist appointments and assessments, of holding your breath and waiting, you finally have a diagnosis—a label—for what is wrong with your child:  Asperger’s Syndrome, an Autistic Spectrum Disorder.  You’re actually relieved to know what you’re dealing with, because, well, because  now that you know, it’s time for that Grand Poobah of Asperger’s from the Special Ed department of your school or from Child’s Service to swoop in and fix your child.  What a relief.

For a moment.

Until  the silence and lack of response from your community is deafening and you realize, with a sinking heart, that it is only time for one thing:

A reality check.

The fact is, there is no doctor, no teacher, no specialist out there who can, on their own, ‘fix’ the all the problems your child is dealing with.  Let me explain:

  • Most family doctors know little about Asperger’s Syndrome and while they can be notorious for denying the presence of symptoms in the face of concerned mothers, can be helpful in referring us to other specialists and resources. They often are unfamiliar with the sleep and digestive issues that can accompany the diagnosis, or the special considerations ASD kids may need when taking medications.
  • A psychiatrist can be helpful when mental illness is an issue (anxiety and depression can be pervasive with these kids), and can be excellent supports and advocates for our children who come to trust and confide in them.  It is not within a psychiatrist’s realm of  responsibility, however,  to provide social skills training, sensory therapy, or any of the many other problems that affect our child’s day to day happiness.
  • Teachers—argh.  Don’t get me started.  Too late!  So with apologies to those wonderful, caring teachers out there, I’m just going to say it: most classroom teachers get little training in how to support our ASD kids, and are fearful of having them in their classroom.  Many regular classroom teachers feel the accommodations and modifications our children need to succeed and get through the day amount to special attention or are somehow unfair to the rest of the class.  They show little patience and less compassion.  They don’t follow our child’s Individual Education Plan because they don’t understand what the document is asking of them.  And may I add, after speaking with thousands of ASD parents, that too many  teachers belittle, harangue, dumb-down, and generally are just not nice to our kidsEducational Bullying, a term I just heard at an Asperger’s  workshop last week, encompasses those kinds of behaviours.
  • Occupational Therapists (OTs) are one of the most valuable supports out there.  These are the experts who can help our child with the large and small motor skill issues, sensory issues, grooming issues and disorganization that can make their days so very difficult.  Unfortunately,  waiting lists for their services are long, and at a cost of  about $100/ hour,  they are meted out quite stingily by school boards and  regional governments.  Our ASD kids  need OT help every day, incorporated into almost everything they do.
  • Ditto for speech therapy.  It is costly, and to be effective, needs to be started as soon as possible and continued until the problems are corrected.  Again, funding realities mean that kids get sporadic chunks of speech therapy instead of the consistent, long-term support that would most benefit them.
  • Social Skill teachers…what are they?  Where do we find them?  This is one of the questions I am asked most often, because it is our children’s lack of social skills that cause them so much grief.  Unfortunately, you will not be assigned a social skills expert once you have a diagnosis.  True, your child may be offered a place in a social skills group, where he’ll learn some appropriate social skills  along with other socially-challenged children (and pick up a few gems you’ll wish he hadn’t!).  You may even be lucky enough to have an Educational Assistant who occasionally writes social stories with your child to teach him expectations.  Here’s the problem:  our kids need social skills training every day, in natural learning environments as well as formal settings.  ASD kids need to be taught all the things typical children learn naturally in the course of growing up.  This is not a one-hour-a-week undertaking.  That’s like trying to hydrate your  lawn by pouring spoonfuls of water on it.  Not completely useless, but not really effective….

So what is a parent to do?  You thought that the diagnosis would make your life—and your child’s life—easier?  Has it??

I didn’t think so.

But here’s the thing:  things CAN get better.  As soon as you decide to learn all you can about each area of need for your child, the tide will turn.  So what if you can’t afford intensive Occupational Therapy for the next 15 years?

You can learn how they work their magic and you can apply those principles and practices yourself.  It is not difficult—surprisingly easy, to be truthful—and the same goes for speech therapy.  Sit in on the sessions your child has with those professionals , and learn how it is done.  In every area where your child has problems—social skills, severe disorganization, clumsiness, learning issues—become a lay expert and it’ll rock his world.  Learn all you can about your child’s special education rights as well, and watch his teachers look to you for guidance and suggestions. See yourself become more confident in dealing with school officials. Watch his self-esteem improve as he copes better with his anxiety.

See you exhale.

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