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Adaptable & Flexible??? Part 3…

So – it’s Thursday and I feel that we’re in a pretty good routine now.  We have located an Italian restaurant nearby that doesn’t mind bringing plain (and I mean plain) pasta for Henry (as well as 3 Cokes/meal….)  We know where the McDonald’s is (where blessedly there is a fabulous bakery/sandwich place that uses authentic sourdough bread – for me, of course!!) – there is a Fivebucks in the lobby for me…  a little market across the street for snackies and bananas (our reliable fallback) – and a very interesting trip to the CVS the other day!!!!  Let me explain…..

We were on our way back from another outing, when I ducked into the pharm for some supplies – seeing the grocery aisle, I quickly and astutely thought, “Staples for Henry…”  We grab a basket, fill it with cereal, bananas, Oreos, granola bars (for me), and pop.  Whilst looking for eyedrops, Henry comes across the prophylactic aisle.  Now, as much as I like to be prepared for anything….

Girl Guide... Cub Scouts... whatever - always prepared!

Girl Guide… Cub Scouts… whatever – always prepared!

I really don’t see the need for this trip….  And he was drawn to the Optic Blue – do they glow in the dark or what?  Upon reflection, this could come in handy….  but not today.  When he points out that he’s leaving for college in the fall and will need them (maybe), I tell him I’ll load him up on whatever colour he wants!!!

So – back to the food….

World famous pancakes!

World famous pancakes!

Today we stood in line for this place – he was dubious, but totally worth it!  Next post will be Survival Guide for Eating in a Foreign City While on Vacation with Henry….  (maybe I’ll work on that title….)

Adaptable & Flexible??? Part 2…

I’ve never been to San Francisco, so like Henry, was really excited about this trip.  There is so much to see and do and it’s a great walking city – one of the things that Henry is very good at…. with me trailing behind him…. (I have reminded him that his legs are at least a foot longer than mine, but to no avail!  I’m old and lazy, apparently…)

So we land and pick up our luggage in a short time.  I lead Henry outside to grab a limo – I figure the setup is like Toronto’s – limos in a line like cabs to take you in comfort where you want to go. All of the drivers are holding signs – amazingly, none of them say, “Christie, where would you like to go?”  So we walk down to the line of yellow cabs, with Henry trailing behind, saying, “You have no idea what you’re doing, do you?”  Well, kind of….sort of….

At hotel and unpacked – Henry is a good roommate – he likes things put away and NEVER loses anything!!!  Brian and I think he’s got his first nickel ratholed away!!!  At this point, he’s starving.  Right!  Off we go to the Embarcadero.  There is a huge refurbished building with a market in it – there’s beautiful cheese shops, organic hippie stuff, delis with delicious looking salads, gluten free bakeries (no go there!), but nothing for the chicken nugget/pizza man…. (I’m reminded of the GREAT CHICKEN NUGGET CAPER – see earlier blog, Food, Glorious Food!!)  At this point, I’m thinking just a croissant to hold him over – we find a bakery with lovely macaroons in every colour, but NO croissants!  What the hell?!!!  We’re now desperate…  He’s got the same look on his face he used to get as a little guy when he was frustrated….

Xmas03 3

Eureka!!  We find a hamburger joint as we’re leaving…  We order chicken fingers with fries (they’re hand dipped and real chicken – not sure whether he’ll like them or not – they’re back up…) and a hamburger, plain.  Oh – and a glass of rose for me…  It finally comes, he’s eaten half the hamburger, puts it down and it falls ON THE FLOOR!!!!  Oh my freaking God!  I’m halfway between wanting to laugh and scream – he’s got a look on his face like he’s about to cry…  I immediately spring into action…. SUPER MOM!!!! to the rescue.  Tell him to eat “my” fries and chicken fingers, while I go and order another hamburger…. (oh – and another rose…. I never said I was perfect….)

Perhaps an outfit for a Friday night??!!

Perhaps an outfit for a Friday night??!!

 

Adaptable & Flexible???

Geared up for our trip!!

Geared up for our trip!!

It is June 30th, and Henry and I are going on his “GRAD TRIP”!!!!  His brother went on a trip with a bunch of his friends to a music festival in Nashville, Tenn.  So, we thought that Henry should be given the same opportunity….  I asked him where he’d like to go… “Paris,” he answered.  “Great idea,” said I….  “But no… Where else?”   “London, England,” he said.  Again, with a laugh, I answered, “No…. How about somewhere in North America?”  Keeping in mind economy and the fact that Left Brain has not been to Paris….  I think that the next time I go, I’d like to be there in a more romantic capacity….  Perhaps next year for our 25th anniversary??  So, after much thought, he came up with San Francisco.  The next trial balloon he floated was perhaps going with a couple of friends?  Uh…. no.

So here we are at the airport, with an hour to spare before boarding.  It has gone smoothly and he is calm.  Henry, like me, likes to be early for everything….  He comes by this OCD characteristic honestly – it’s not just his anxiety or autism….

Not so calm now....

Not so calm now….

This is when they have started to call the flight…  I’ve explained to him the order of sequence of people getting on the flight…  Notice the line of people to the left of Henry!  He says he’s paranoid that we’re going to miss our flight (even though we’re 30 feet from the departure gate!)  I’m calm….  I tell him, “We’re good – don’t worry.”

We get on the flight and we’re settled.  Then we don’t take off for an additional 45 minutes because of some mechanical issue, and I can see his anxiety starting to ramp up.  Once we’re aloft, the pilot tells us that there’s some unsettled weather over the midwest and there might be some “chop”.  Fabulous!  I can deal, but he’s holding my hand like we’re going down on the Titanic….

Then comes the whole ordering of lunch.  Now – let’s face it….  Airline food isn’t exactly gourmet (not that that’s the standard my son is used to – more like Pizza Pizza on a daily basis…)  But I’m hoping that the bland pizza that they have might pass muster….  I knew that food was going to be an issue on this trip.  Many friends spent time giving me restaurant recommendations for this trip.  I listened politely, but knew that I would have to find out where the McDonald’s was, or a Pizza Hut….  So, tragedy of tragedies, the pizza does not “look” like his regular pizza – the pepperoni slices are too big – he’s put off.  It’s also too hot for him to pick up…  So I’m sawing it into little pieces, and encouraging him to take a bite, because most of the pizza we’re going to see this week will not look like Pizza Pizza’s….  One bite, and he’s done…  Good God….

Air Canada's pizza does not look like this....

Air Canada’s pizza does not look like this….

GRADUATION!!!

Happy & proud - you earned it!!!

Happy & proud – you earned it!!!

So, as I promised, I thought I would share my thoughts on graduation…. A Monday morning quarterbacking, if you will….

The day after graduation, I dragged my butt into yoga – I felt incredibly tight.  I realized that the previous week, I’ve been clenched in anticipation and dread, and my body was feeling the effects.  I was still dangerously close to crying if anyone asked me anything about Henry… God – what’s wrong with me?!  This is a happy time!  Not only has my son worked his butt off, but its the culmination of a hell of a lot of hard work and anguish on my part (not that he’ll ever know this…)

The room was about 150 degrees Fahrenheit…  Do schools do this on purpose?  I think churches do it too for weddings….  There were 10 graduates, all marching in with huge smiles on their faces.  The evening began with awards (not just to graduates), which are voted on by their peers.  The awards are based on the 6 core values of The YMCA Academy – I won’t bore you with all of them, but Henry won the Responsibility award.  In his entire high school career, not one assignment was handed in late – I think he only missed 5 days of school in 4 years!  His favourite teacher “Z”, gave a very funny presentation of Henry.

I have to give a huge shout out to the extremely enthusiastic and energetic teachers that were all there for the big night.  Three of Henry’s teachers, who have enjoyed his wacky sense of humour over the years, actually looked depressed!  So – the diplomas…  Everyone got one – Thank God!

Then the kids were given the opportunity to speak, if they wanted.  Not one to miss an opportunity for the dramatic, Henry opted to go last!  I don’t know where he gets this from!  (Left Brain is rolling his eyes at this one!)  So – I’m waiting in anticipation – I’ve been pretty good as far as not breaking down and crying so far.  Then one of his classmates, who has been with Henry since Grade 1 in Dunblaine and is a lovely girl, got up to speak.  She started crying in her first paragraph, thanking the school, her parents (her wallet and rocks), and eloquently telling us what it means to be in a place where her learning disability wasn’t something to be ashamed of.  Where she’s been allowed to shine and excel.  There was not a dry eye in the place…

Henry is next…  He talks about his dreams of eradicating the world from stupidity!! (to huge laughs of course).  I’m only concerned with our small corner of it at this point…  He thanks his teachers and the school, his friends, and lastly, his parents, for the love and support (and being his bank)!

Just so you get a sense of the thespian's abilities....

Just so you get a sense of the thespian’s abilities….

I’m reading this back and realizing that it doesn’t even begin to cover how I feel on this night.  I can’t be eloquent or clever enough to express my feelings.  All I can say is, Holy S–t!  We’re here – my son has graduated!  We weren’t ever sure we would be standing here at all.  When we began the YMCA, I asked whether he could graduate without math… I asked how long would he be allowed to stay in high school (until the age of 21, FYI…)  And we’re here!

One final note…. Henry received an Ontario Scholar diploma.  This means he obtained an average of at least 80% in any six of his Grade 12 courses.  What a guy!  We are SO proud…

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.

1998 004

Is The Bar Too High?

fosbury

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??

images

 

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….

spock

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.