Tuesday, 30 June 2015

Standing Up For Yourself

Most of the time, we're encouraged to listen to authority, follow the rules and make nice with other people.  These are all good and necessary things in life, but sometimes they need to be thrown out the window.

Yesterday, I was speaking to a parent whose child was recently diagnosed and their situation struck many of the same chords that I went through.

The family doctor who dismissed and denied, making me feel like I was crazy and paranoid for even suspecting something was wrong.

The impenetrable bureaucracy of the school board, with suggestions and preferences phrased as iron-clad dictates.

The utter silence from various groups as to what the heck I was supposed to be doing next. 

The well-meaning but hurtful comments from a select group of others who mainly wanted to know what I'd done wrong so they could congratulate themselves on having avoided it.  Or make themselves feel better by saying that it was all part of a plan.

Hopefully these kinds of reactions will become rarer and rarer as more people understand how prevalent autism is and how to deal with it.  There are already vast improvements since 2006 when we got our first diagnosis.  Now the Ontario government has a resource kit for families to help them navigate their options.  They're working on putting together an overarching agency to help families.  The schools are more aware and better equipped to handle a child with autism.

But there are still occasions where parents need to put down the diplomatic pen and start wielding some red-tape slashing swords.

To put it bluntly, if your family doctor is telling you that your kid will grow out of autism, that there's no need to worry, that lots of kids have autism and do just fine, then you need to kick his/her butt to the curb and find someone else.  There are too many things which rely on a cooperative physician and trust me, you don't have the time to waste.  I used to tell myself that it didn't matter what my doctor thought as long as he got me the referrals I asked for.  But it was emotionally draining to listen to every time I had to speak to him (and there were lots of them).

Some schools are great and some aren't.  It's really a matter of a mixture of personalities and resources.  But sometimes I feel that the board deliberately tries to make things as opaque and difficult as possible for parents.  I don't know if it's an effort to save resources or simply bureaucracy grown to unmanageable proportions but the lack of communication is a definite issue.  The Ontario Special Needs Roadmap is an interactive program developed by parents to help them penetrate the bureaucracy and get what our kids need.

There's still a great deal of conflicting information out there and that's not likely to change.  Everyone has an option about the best way to deal with autism and sadly, it's hard to tell the difference between wishful thinking and evidence-based information.  I think this is why so many organizations are reluctant to comment on various options.  They don't want to dismiss parents' experience and desires but can't endorse programs they don't believe will work.  Because they can't endorse all of them, they end up not being able to say much at all.

Friends and family are a necessary and wonderful support system but in the first few months after diagnosis, it can be a chafing and draining set of interactions.  People like to understand how bad things happen, they like to theorize and tell stories.  It's part of a reassurance mechanism to help us feel like this is an ordered and purposeful universe.  But quite often, that impulse only makes parents feel isolated and frustrated.

My advice to the extended circle is to do research on your own time.  Unless the parent brings it up, save your theory on genetic influence vs vaccinations for other people.  Try to listen instead of fixing the situation.  This is a long-haul issue with many unusual features, so telling people to look on the bright side or take comfort in the fairness of the universe or telling them that this could all be fixed with different parenting decisions is not helpful, no matter how much it makes you feel better to believe it or how much you'd like to take away their pain. 

Parents, be gentle with yourselves.  There is a grieving process as you come to understand that your life has taken an abrupt right turn from where you thought it would be.  That's normal and we all go through it.  The only thing I can say is that it is also temporary.  Sooner than you think, you'll get your feet back under  you and start to understand the layout of your new world. 

Meanwhile, keep your pen and your sword handy.

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