Monthly Archives: May 2014

Risky Business

This morning, as I was doing a backbend in yoga….  Talk about risky business!  By the way, this is what a backbend is supposed to look like…  Can’t you just imagine her serene, organic, vegan thoughts as she floats towards the sun??

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This is not what my backbend looks like….(and you’ll never see a photo of me doing that!)  My version is rather less elegant, and there is a lot of grunting and cursing involved….  When I think of risky business, what usually comes to mind is stuff like drinking and driving, sex without protection, sharing needles…. But for Brian and I, risky business might be bungee jumping, sky-diving, parachuting, or something as mundane as cycling on the open road.  At one point, we wondered whether we should even be taking the same flight together when going on a vacation.

Am I being overly dramatic?  No.  Every parent has a dilemma when they’re deciding who will look after their children if something happens to them.  When our children were younger, we decided against our parents – too old, not enough patience…. (sorry Mom and Dad….)  My siblings were unsuitable for various reasons.  Brian has two brothers – one unmarried at the time.  That left my brother-in-law and sister-in-law…  Fortunately, my sister-in-law, Nancy, was a teacher and totally “got” Henry.  Unfortunately, they live out east, and my children would have been taken from everything they know and probably, not as many available services for Henry.  As they got older, I asked my very best friend whether she and her husband would consider being my kids’ guardians.  She considered the request thoughtfully, but had to decline.  I totally understood her position, but now, I had to make sure that we would remain healthy until my kids reach adulthood.

John is now 20 and Henry almost 19.  John will be responsible for his brother should anything happen to us.  Is this fair?  No…  Do I feel badly that he might have this burden for the rest of his life?  Absolutely.  Am I glad that we had more than one child – an heir and a spare, so to speak – so that there is somebody in the world who will care about what happens to Henry?  Yes – Thank God we did have 2!  We have spoken to John briefly about this and will definitely get into more detail as the boys mature.  This situation stinks for John, but it is what it is….

So… Brian and I continue to do yoga, exercise, try to eat right, minimize our vices so that we will live long and prosperous lives….

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Welcome to Holland

Welcome_to_Holland

I thought this would be a good follow up to Dreams…. I received this story as part of a package at The Geneva Centre for Autism shortly after we received Henry’s diagnosis.  It’s a fairly accurate synopsis of what it’s like raising a child with a disability.  It’s author is Emily Perl Kingsley, c1987 (All Rights Reserved).

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say.  “What do you mean Holland??  I signed up for Italy!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy.”‘

But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.

So you must go out and buy new guide books.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there.  And for the rest of your life, you will say “Yes, that’s where I was supposed to go.  That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things… about Holland.

Dreams

 

Castle of my Dreams

Castle of my Dreams

You know that dream where you’re running away from the giant, all while trying desperately not to trip on that ribbon-streamy thing that’s attached to your crown (because of course, I’m a princess in this dream….)  It goes without saying (no pun intended), that you can’t scream in the dream.  You finally reach the castle and are hiding in a small room with one of those slitty windows, and the giant’s eye appears in the window.  You’re still trying to scream of course, and then a big hand comes around the corner to grab you…. What?!  You’ve never had this dream?  Puh-lease….  I don’t think I want to know what this dream says about me.  But anyways, I wake up before the hand reaches me.  I’m in my bed, with my husband beside me (snoring or buzzing – he disputes this…) and I’m safe.

When you receive a diagnosis of autism, the “dream” that you had for your child changes.  No longer the rosy outcomes of Little League, graduation, college, marriage and grandchildren – the “normal” stuff that parents think about when they’re holding that beautiful little thing in their arms.  Everything is uncertain.

The first thing that I thought about when we received Henry’s diagnosis was this…. I felt so sorry for this little kid who had been trying so hard to have his needs met.  It’s like he was in a foreign country where he didn’t know the language – can you imagine how frustrating, hard and tiring it would be every day to try to communicate with the world around you?

The next thing was sorrow… I sat in my car and sobbed for at least 30 minutes.  Thinking of it now makes me cry…. I was so scared – what did the future hold for my son?  Would he ever be able to make it through school?  Live on his own?  Find a partner who would appreciate and love him for all that he is?  Would he always face discrimination and prejudice from those who just didn’t “get” him?

But here’s the thing about dreams…. That first one has been replaced with this – I’m dreaming of Henry graduating from high school (he will – with honours); I’m dreaming of him going to college and living away from home (he will be in September); I hope that he will find a career that fulfills him; I hope that he will live independently and happily and finally, I’m sure he’ll find someone who will love him for all that he is… because once you’ve met Henry, you love him!  And as far as him facing discrimination, I can only hope that the more the world is educated about the unique gifts that autism has to offer, he will be embraced and appreciated.

There is a quote that goes:  “We must be willing to get rid of the life we planned so as to have to live the life that is waiting for us…”  Always be willing to let the new dream take hold.

 

Why Now?

 

Why not earlier – when Henry was younger?  Certainly my recollections would have been much clearer, my emotions that much more raw and real, if you will….

Firstly, Al Gore and I had not invented the internet yet…. (hahaha).  At the time, I kept a “Gratefulness Journal”… remember those?  Sometimes I was very grateful for a bottle of wine in the larder!  I was so immersed and consumed with getting through each day that reaching out to a wider audience did not even occur to me.  How could I help others when I had no idea what the hell I was doing?!

I have been thinking about doing this blog for about 2 years.  I held back because I wasn’t sure that I wanted to relive it all.  It was a confusing, frustrating, heartbreaking (sometimes) and utterly draining (sometimes) experience.  It was also joyful, fulfilling and one of the happiest times of my life.  I absolutely loved being a stay at home Mom (or domestic goddess, or work without pay technician – although Brian would dispute the pay bit…)  I had also been fearful about being “responsible” for others’ problems or experiences….  There are so many out there whose situations are so much more bleak than mine ever was.  But – I can only hope that some story or tip that I might be able to pass on might help someone who is going through a similar experience.  I had a support system – my husband, my friends who “got it”, and intermittent help from my family.  What if you don’t?

You may have noticed that many of my stories have a humorous tilt to them.  First of all, I tend to see the funny in many situations – but – and this is a big but – I’m able to laugh at a lot of these old stories because I now know how the story has turned out.  Henry is doing very well – we are still married – and we didn’t damage our other child irrevocably in the process (at least, I don’t think we did – I guess we’ll find out if he’s going to therapy in his 30’s….)

Please let anybody know about this little blog if they are struggling with a challenging child.  Who knows… it might help!

That Old Familiar Feeling…

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When your child is entering a new phase of their life, there is always anxious anticipation – whether your child is “typically developed” (this is the PC way of saying normal… whatever that means….) or has special needs.  But there is a huge piece of the puzzle that goes into “our” children succeeding.  They have been nurtured, cajoled, supported and “therapied” to get to this point.  In Henry’s case, he has always been in a private, small and heavily supported environment.  And so, on Tuesday of last week, Henry and I attended an information session at Durham College put on by the Center for Students with Disabilities.  We were about to enter the “Bigs”!  It occurred to me at one point, that had he not had as many supports up to this point, we might not be in this room.

Before coming to this seminar, I had actively surfed the website of the college for information.  I had also called the school to speak to someone in the CSD (Center for Students with Disabilities).  I felt I was armed with the information necessary to convince Henry that he absolutely needed the services that were available – he was dubious, by the way.

The presentation began – 2 hours in the morning from various reps in the Center.  What was most interesting to me was a panel of students from the College who were presently using the services of the CSD.  One had “tried” college 2 times before and had been unsuccessful.  This time he used the services at the CSD and was doing very well.  The other 3 students talked about how helpful it was that they had emotional support as well from their advisors.  By the way, the CSD is set up to help anyone with a diagnosed learning disability, but also young adults who might have some form of mental illness, whether that’s anxiety or depression.  One girl spoke very openly about her troubles with anxiety and depression and it was hard to imagine this bubbly, engaging girl struggling with this.  Yet here she was!  A successful student who was actively involved in a sorority on campus.

After lunch, the kids and parents were separated to work in groups.  The parents were asked a series of questions – the most interesting one was:  “How many of you are anxious about your child coming to college?”  95% of us answered yes – no surprise… I almost snorted out loud – are you kidding me??!!  We have been actively, invisibly supporting our children for their entire academic career.  Now we have to let them advocate on their own – and some, like Henry, will also be living on their own for the first time.  The joke in our family has always been that once Henry gets accepted somewhere, Mommy is going back to school as well.  When we toured the residence, I joked that it was the perfect set-up for 2!!  Two bedrooms with doors, with a common area, kitchenette and bathroom to share.  I told him I’d keep him supplied with Cheerios, Tubes, bananas and Goldfish for his 4 years.  Everybody but him thinks it’s funny!

There is a lot of paperwork to fill out – intake interviews to attend – and I’m sure a lot of anxieties to soothe before September (both his and mine!)  But the point is – we are here!!!  I never would have thought it possible 10 years ago!  Have hope everyone!  You never know what might be possible!