Saturday, August 28, 2010

You've Got Mail

A letter came in the mail yesterday addressed to our little man.  And this letter has already made our lives exponentially easier.  Perhaps a little background information is in order...

At the beginning of this summer, Aiden somehow got it in his head that he wanted to drive a transport truck.  And he wasn't talking about it in that cute, "when I grow up..." kind of way. He meant now. Those of you familiar with autism know that once our kids get something in their head, it tends to stay there.  So, for weeks we were inindated with the same question, "When I'm five can I drive a transport truck?"  We'd try to shrug off our "no" answer to lighten the blow, but his insistence grew.  And his dissapointment did too.  We were being badgered, and there was no end in sight to this badgering.

So, I had an idea.  Aiden and I wrote a letter to Hon. Kevin O'Brien, the Newfoundland Minister of Governemtn Services.  That's right, I wanted Aiden to get the news straight from the horses mouth so that he could accept the "no" more easily.  Also, I thought it would buy us a load of time, so whenever he would ask his question, we would say, "You'll have to get your letter back and see what the Minister says."

Ha Ha.  I fully assumed that I would wait a reasonable amount of time and send him a reply myself, gently letting him down.  But to my great shock, yesterday's post contained a letter addressed to him in a provincial government envelope.  Could it be?  Unbelievably, he had gotten a reply.

And not just any reply, he recieved a three page hand written letter, sighed "Kevin". And let me tell you, it was a beautiful letter, much better than the fake reply I had been planning.  The Minister talked about his own brother wanting to drive a truck, and how he had grown up to make a career of being a trucker.  He went on to say that he had to be 19 to get his license, but that time goes very quickly when you are young.  So eleoquently he encouraged him to keep his career goals open, and that perhaps he might rather start a trucking business instead, and own an entire fleet of trucks, calling this "Something to dream for."  Finally, he invited Aiden to write to him again anytime he wanted, or even to get us to bring him to his office so that they could meet each other.

I've got to tell you something.  This response has touched us greatly.  I think of all the letters I have written to provincial governemtn ministers, and no responses ever come my way.  But I think of this man, who opened a letter from a little boy and took the time not just to brush it off, but to handwrite a meaningful response.

Thank you Minister O'Brien. 

He didn't know that Aiden had autism. He just answered an innocent little boy's letter, and showed great respect for a little boy's dreams.  He let him down gently.

"Mom, when I'm 19 can I drive a transport truck?"

Let's cross that bridge when we come to it.....

Saturday, August 21, 2010

The Good Fight

Sometimes I just get tired of feeling angry.  I've learned to live with side long glaances, I don't even care if people look at me sometimes like I'm a bad parent if himself decides to lose it in public.  In truth, public meltdowns happen with much less frequency than in the past, and my skin has thickened cosiderably within the last few years.    

The way I look at it, I have the responsibility, as a parent of a child with a disability that affects key social skills, to help him gain those skills.  And I can't do that if we never leave the house, so look out community, here we come.   I also think I'm pretty reasonable, I try lots of different places, lots of different things.  Some activities/places work, some don't, but we still try.  If they're not working, I don't allow him to act up and ruin it for anybody else, because that would be unfair. 

So, earlier this week when I headed out with my two little ones, and things started to not go so well, I decided we had to leave.  Of course, once he realized that I was in the process of leaving, my little man got quite upset.  But that was okay, because he could scream for a minute while the lady manning the check out desk helped me.  There was no line up, I knew we could be out in a matter of minutes.  BUT....

But, said lady thought that rather than assisting me in my efforts to procure a speedy exit, her skills would be best used to attempt to intervene.  Bad idea.  She began telling him how to act, and when she got nowhere with him, she turned her attentions to me.  Offering unsolicited, unwelcome, parenting advice.  Well, gee, thanks.  Now, my already upset boy has added to his frustrations the fact that some strange lady is telling him what's what, and his safe person in times of crisis (me!) is currently embroiled in an impassioned one on one with this lovely gem of a woman.   GRRRRRRR....Mama Bear's claws couldn't help coming out just a little...

So, long after we could have been gone, I'm still there... and boy is now in full meltdown mode.  Thanks for all your help.  At this point, the lady is irate and beyond rude, and I am livid.  I left the place in tears.  I go lots of places where I've had to leave, but it has been a long time since I have left in tears.  This woman found just a few minutes of my daily life so utterly unbearable...and had no trouble sharing that with me. This interchange left me rattled for days.  Being angry takes a lot of energy, and I know that even if I have the right to be angry, it doesn't mean I have to let that emotion ruin my day.  But I just couldn't let this go.

I reported the incident to the director of the place (a place that is funded by tax payer dollars, by the way.)  At first, she spoke in defense of her employee, but after a lengthy conversation she changed her tune.  The more I spoke to her about the incident, and how it made me feel, I honestly think she was ashamed that it had occured. 

Hubby wasn't content to leave it at that, he had seen how upset I was by the incident, and he thought it warranted a little follow up.  He learned that the employee would be reprimanded, and would be required to undergo sensitivity training.  Victory.

I am proud.  I can look at my boy and know that I stood up for him, when he is too young to stand up for himself.  It's the job of all parents, add a sprinkle of special needs, and it becomes your primary role.  To make the community accessible, aware, and sensitive. 

I didn't just take this on for my boy though.  I can honestly say that I will never bring him through those walls again.  I  much prefer places that are welcoming and warm.  And I've found that there are lots of them.  However, I did it knowing that somewhere in this town, is another mom who wakes up in the morning, and finds her daily dose of courage to take her child with special needs out into the world.  And that she too does it knowing it won't be easy.  And if, perchance, her child decides it's more than they can handle, maybe somebody will be helpful to her.  We fight the good fight not just for ourselves, but for all members of our special needs community.

The whole thing, although resolved, still makes me sad.  I was just a frazzled mom trying to leave.  A little help was all I wanted.

Monday, August 16, 2010

Beyond the Big Picture

Last week I had a great opportunity to attend a training session put off by the Geneva Centre for Autism.  The topic was Structured Teaching and I learned a lot of practical, truly useful information.

The presenter had all of us roll up our little Power Point handouts, and look through them like a telescope.  The exercise was intended to illustrate what it is like for individuals with autism, as they tend to see the world in fragmented pieces, rahter than the proverbial 'big picture'.

This really got me thinking.  While obviously an inability to see the big picture, all the parts as a whole, would present many, many challenges to a person...I can't help but see a hidden gift here.  I don't know about you, but sometimes the big picture is a little daunting, and I wish I could focus in on the tasks at hand sometimes, without always looking too far ahead.

Imagine being able to concentrate all of your energies on doing one task well, or learning about one area of interest inside out and upside down, before tiring of it and moving on. Focus.  To the umpteeth degree.

I'm a big picture person.  I get caught up in all that lies ahead of me.  I plan myself crazy at times.  This comes in handy when you have to manage life for a sensory-stressed child, but it can get pretty exhausting too.

Sometimes I'd like to see beyond the 'big picture', I'd like to truly take each day as it comes, get lost in the joys and miracles at hand.  Worry about the rest later.  Get through what I've got to get through without seeing all that lies ahead.

Maybe we could all benefit from a small dose of tunnel vision.

Wednesday, August 4, 2010

Amazing Contest!

I just have to let you all know about an amazing contest, by Soft Clothing...they are awarding a Back to School package of sensory friendly clothing, etc.  If you have a child with sensory issues, I strongly suggest you give this contest a go! You never know....
Follow this link:

Good luck!