Tag Archives: autism

Graduation – A Catch 22

As I sat this morning, surfing the Web for sales, I realize I’ve been postponing this particular post…. (and I don’t even like to shop – even from the comfort of my own home!)  Graduation is tonight, and I am so conflicted.

Obviously, I am happy and proud with Henry’s achievements, as well as the countless others who contributed to his success.  At times, we weren’t sure whether or not he would even graduate from high school – or how long it might take him.  For his part, he is excited about the fall – college, residence, new friends…. But we are leaving a safe and happy place to enter the unknown, very adult world of college.

I ran into a group of friends this week on the street having coffee.  It went like this…  “How’s Henry?” they asked.  “Fine,” I said.  “He’s going off to college and living in residence this fall.”  “How will he be with that?” they asked.  “I think he’ll be fine – I hope so – we’ve set up a lot of support for him,” I say.  “How will you be?”…..  I realize in horror, that I’m perilously close to bursting into tears.  Thank God for my Maui Jims!  I haven’t been this emotional since I was 14, crossing over the threshold into “womanhood” (BTW, health class didn’t even come close to preparing me for the next 60 years….)  I manage to pull myself back from the brink of the cliff and tell them the in-house joke of the past couple of months.  I’ve been telling Brian (Left Brain), that come September, he’d better start paying more attention to me or I’m getting a dog for each room of the house!  He tells me not to threaten him….

So, with these mixed feelings, I am charging up the camera battery, checking the flash, ensuring I have waterproof mascara, and picking out an outfit that is comfortable, and not too hot (basically one of my menopausal uniforms…)

I’ll let you know how it goes tomorrow….

Birthday Parties

Are birthdays scary?

Are birthdays scary?

Can we all admit, now that our kids are older and we don’t have to give those big, elaborate, expensive parties, that they were the WORST???  When my kids’ birthdays approached, I thought in dread of the fete I was expected to throw….  Being politically correct, every child in the class had to be invited (which I agree with – since I lived in fear that Henry would not be invited….)  Gone are the days of the relatively calm birthday parties that I grew up with.  A few friends from the neighbourhood, a few games, a nice lunch, birthday cake (with coins in it of course), a small but cool loot bag, and everybody went home!  My parents had 4 kids to contend with, and had no money, so large parties would have been out of the question.  Nobody had big parties for little kids…..

 

Party sandwiches, chocolate milk & cake - what could be better?!

Party sandwiches, chocolate milk & cake – what could be better?!

So, back to those big parties…  First, you have to come up with a theme or something for them to do…  and it can’t be the same thing that your friend dreamt up for their kid’s birthday.  And you’re trying to avoid taking out a loan to pay for the damn thing!  And inevitably, the most irritating, pain-in-the-ass kid was always picked up last!  You might think I’m being awfully hypocritical, given that Henry couldn’t have been a walk in the park as a little guy.  Well – he wasn’t – and I’m not!  I was always on time to pick up Henry!  You know why?!  Because, I had to attend the parties he was invited to as well!!!

Now, don’t get me wrong…  I was very grateful to the Moms for including Henry in everything – and all of the kids liked him.  But, he often did have meltdowns during these crazy, overwhelming, sensory overloads called birthday parties!  I could hardly expect the Moms of the birthday girls or boys to handle him as well as handling all the other little darlings.  So, instead of a few hours of peaceful respite with a book, I was at the parties….

Some of the parties stand out in my memory.  One in particular….  There were at least 40 kids at this party, and every relative that the kid had….  Henry had had two meltdowns during this party (which was also too long).  During pizza, the birthday boy absolutely LOST IT!!!!  He started crying and yelled at the top of his lungs, “This is the WORST birthday ever!!!”  Right on, little dude!!!  I can’t WAIT to get home and have a glass of wine, and I don’t care if it isn’t the cocktail hour – it is somewhere in the world!

I can laugh now at these silly things – in the big scheme of things, birthday parties were not the end of the world.  And thankfully, I do remember the feelings of warmth at watching my children’s faces in joy as they ran, jumped and laughed at their own birthday parties.

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Is The Bar Too High?

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So… Henry is standing beside my chair (thankfully, before Game of Thrones starts!!!  I mean really!  What is happening with Tyrion??!!) and he is shifting from one foot to the next, as he tremulously says, “Mom?”  Now – I’m no genius – but I figure, something is up.

Indeed – he produced a math worksheet – God – I hate math word problems!!!  When are any of us ever going to have to manually figure out how to compound interest?!  Isn’t that one of the wonders of technology?  And if you have a child with a language based disability, math word problems are the dearth of our existence!!!!

Anyways, we worked through the problem.  But not before his anxiety started to ramp up and the shifting from one foot to the other became a frenzied dance.  And not in a “Dance like nobody’s watching” kind of way.

Next year, Henry is taking a foundation course at college (since he was in applied curriculum courses during high school), to get his university level english and math – and some sciences, because why not?  His eventual ambition is to take a course at The University of Ontario called Energy & Environmental Physics.  YIKES!!!!

Are we setting him up for failure?  Is the bar too high?

When John set off for university 2 years ago, it was to the same institution where some poor kid jumped out of a window and killed himself.  Now – I’ve always been pretty open and frank with my kids – especially John – and we let him know that there was absolutely no problem that was unsolveable.  Still – it’s a fairly scary thing as a parent to worry about whether or not your child is suffering in silence.  (Check out http://www.thejackproject.org to see the good work they are doing to open up the conversation about mental health).

I have asked Henry’s teachers repeatedly whether they think he can succeed in this program.  They assure me that his work ethic, organizational skills, enthusiasm and desire to succeed will get him through.  I know all these things about him…  Am I being a shitty parent worrying that he might not be able to do this?  I don’t want to be a Gloomy Gus Naysayer… my parents were like that – it was all about having a marketable skill.  That’s all fine – but, if you hate what you’re doing, how marketable are you going to be?  It’s a long life and everyone should have the privilege of pursuing their passions.

So – although we are setting up every conceivable support system that I and the team at Durham can think of to help Henry succeed, there is always a Plan B.  We’ve already set him up with tutors; he might have to take a reduced course load…  If he finds the math and science courses are too tough, then we will look at alternative courses that he might be interested in….

I guess the point is, it is not Brian and I who are setting that bar higher and ever higher.  It is Henry!  And like the cushiony pad under the high jump bar, we will be there to cushion his fall – if there is one.  One thing is certain – we will always, always be on the sidelines cheering him on until our voices are hoarse….

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!

Why the Title?

BabyHenry 001

Henry did not sleep through the night until he was 3 1/2.  He would not nap unless he was in motion, either in a car, stroller or rocking chair.  When he did wake up from a nap, he would cry for at least half an hour.  He did not like to be swaddled and refused to wear mittens when he could throw them off.  He did not feel pain, nor was he bothered by the heat (or seemingly, the cold).  He had fevers often but would NOT take medication.  Transitions were hard.    He had special sensitivities to smell and sound, so a nice little Disney movie outing was a fantasy.  Forget about a trip to the specialty cheese store (or God forbid, the fish store)….  He was very particular about certain things, like how the hat went on his Woody doll.  Add to the fact that he did not acquire speech until he was 5.  So why the title, mypuzzledlife?  Can you imagine trying to figure out your child’s needs and wants under these circumstances?

The symbol for autism is a puzzle piece.  I think it is particularly apt…  Unfortunately, when babies are born, they do not come with a manual.  Figuring them out is a wonderful journey.  But when your child is autistic, there are a lot of pieces that are harder to figure out.

My mom and sister used to love putting together jigsaw puzzles over the holidays.  I didn’t seem to have the patience to do it when I was younger – if a piece didn’t fit, I would try to pound it into place, and then failing that, would lose interest and move on.  Henry is the most challenging, sometimes frustrating and wondrous puzzle I have ever worked on.  When one piece falls into place, there appears a bigger, more spectacular picture to behold.

Those of us who have children on the spectrum are continually working on our puzzle. What does your puzzle look like?

What to Do?

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Henry is biting me again and I don’t know what to do about it.  Now, before you think this is a “Fifty Shades” kind of adventure, let me give you a little more information…. Henry is my son, and he is 3 years old at this juncture.  And to throw a fly into the ointment, you need to know that Henry is autistic, but we don’t know this yet.

So, onto the biting.  He’s bit me a couple of times before.  When his older brother John did this (once), I took his little hand, slapped it, and very emphatically said, “NO!”  That was the end of that.  I had tried this with Henry with no success.  So, this time, I searched the memory banks and remembered that somewhere I had read this if you bite your child back (lightly… don’t get excited), they will understand that it hurts and they won’t do it anymore.  So, I bite his chubby little hand….  He stepped back, lowered his head and rammed me in the pelvis!  Direct hit!!

I don’t remember ever reading a chapter in any of the parenting books on kids that don’t respond to what you consider a reasonable response to a situation.  I was trying to navigate through very strange waters without a compass.

There is a happy ending to this story.  Henry is now 18 years old, has been accepted into college and is set (and excited) to leave in the fall.  I hope that our story will help many of you out there who are confused, worried or a little desperate.