Tag Archives: parenting

Recommended Reading – Part 2

Looks fascinating!!

Looks fascinating!!

So, this is a follow up to my first post on Recommended Reading.  There are sooo many books out there – some are absolute crap – but others really helpful.  In fact, there should probably be another post on what not to read.  I find that the ones that tell us what it’s like to be inside an autistic’s brain to be the most helpful.  Here are my other Top 5 (to finish the Top 10 list – because nobody does a Top 5 list….)

  1. Carly’s Voice – Breaking Through Autism – by Arthur Fleischmann with Carly Fleischmann – This young girl is a twin and is non-verbal.  With help from her therapists and the world which was opened up with a computer, she is able to communicate what it’s like to be her.  She also writes a blog, which you can find at carlysvoice.com.
  2. look me in the eye – my life with asperger’s – by John Elder Robison – This guy did not find out he had Asperger’s until he was 40.  He dropped out of school, and worked with KISS – he developed their fire-breathing guitars.  He has a dark sense of humour, and it is fascinating to read his story.  Mr. Robison also wrote a subsequent book called be different – Adventures of a Free-Range Aspergian.
  3. the curious incident of the dog in the night-time – by Mark Haddon – I’m sure practically everyone has read this book; but if you haven’t, it strives to solve a mystery as told by a young autistic man.  Mr. Haddon worked with autistic people, and he really “gets” it.  The story is also very funny – at least I thought it was – but then, I recognized a lot of the idiosyncrasies.
  4. There are 2 books by Gabor Mate, M.D. that I thought were fascinating.  Although they don’t deal directly with autism, they do capture what it’s like to be on the fringe of society.  They are:  In the Realm of Hungry Ghosts, and Scattered Minds – A New Look at the Origins and Healing of Attention Deficit Disorder.
  5. Being the Other One:  Growing Up with a Brother or Sister Who Has Special Needs by Kate Strohm.  Siblings of the disabled face particular emotional challenges that are often overlooked.  The author conducts extensive interviews with siblings of all ages.  This particular topic is obviously worth a blog post – more to come on that….

So – that’s it – for now…

Happy New Year!!!

Guess who!!

Guess who!!

I cannot believe it’s 2015!!!  But first – a few musings on New Years Eve…

  1. Ryan Seacrest is a poor substitute for Dick Clark.
  2. All of the other hosts on the other programs featured people I’ve never heard of….
  3. I also have never heard of most of the acts that were “performing” (doesn’t anybody just sing anymore?  I’ve never seen so much lip-synching in my life!)
  4. I couldn’t care less whether or not I make it to midnight to see the ball drop!
  5. I’m not much of one for New Year’s resolutions.  I’m more of a beginning of school, September kind of gal.

I did get to thinking about resolutions that we make around this time of year.  Of course, there’s the usual losing weight, quitting smoking, getting healthier kind of fare.  And these are all laudable goals.  But why particularly, on January 1st?  Aren’t these things we should be striving for every single day?  It can also be rather overwhelming if you’re facing a goal of 30+ pounds to lose, or cutting out your regular 10 ciggies a day, or trying to start exercising if you hate it!  But I think that if you break your goals down into small, measurable steps, you’ll be surprised at how far you’ve come when you look back.

And, if you are a parent to a child with special needs, the future can be quite scary.  When we first moved into our present house 13 years ago, Henry was just beginning primary school.  Besides the fact that it felt like we jumped through hoops to get him accepted to this school in the first place, the other things that I worried about every day could be rather overwhelming.  Would he ever learn to read?  Would he ever “get” math?  Would he have friends?  Would he get kicked out of the school for acting out?  Never mind – would he ever graduate from high school, go to college/university, find a girlfriend, get a job, live on his own…. If I thought about these things, I would have driven myself crazy.  So Left Brain and I learned very quickly to only think about the things that were directly in front of our face at that particular moment.

If I could share my New Year’s resolution wish for all of those parents out there who are frightened and worried about the future, it would be:  “Deal with what you can at the moment.  Don’t beat yourself up – and don’t sweat the small stuff.”  As time passes, you might be surprised and amazed at how far you’ve come!

“The Uniform”

That was Robin's cape - we also had Batman & Superman...

That was Robin’s cape – we also had Batman & Superman…

“I’VE BROKEN MY BELT!!!!”, he bellows in a panic.  Now, this is a key part of his uniform – but having said that, I guess I wasn’t picking up on the immediacy of this problem!  Let me explain about “The Uniform”…

Since Henry was a little guy, he has gravitated to the same thing every day – whether it’s his attire or what he eats.  When he was little, he wore a superhero cape everywhere!  He especially loved running and looking behind him to see it fluttering in the breeze (there was also an Acadia hat that was worn…)

When he was a little older, there was an Acadia sweatshirt that his grandparents sent one Christmas to Left Brain – which was sized for a 12-year old…  This got worn until it fell apart – even during the heat of summer at camp.

Notice the toque... This was an accidental overlap of the whole hiphop-gansta thing...

Notice the toque… This was an accidental overlap of the whole hiphop-gansta thing…

Then the age of the baseball shirts – even though he hadn’t the slightest interest in the sport…

He had the Blue Jays, the Tigers & of course, the Yankees...

He had the Blue Jays, the Tigers & of course, the Yankees…

Then came the age of plaid shirts, jeans, belt cinched as tight as possible, and the ever present hat – which is a good thing, because it coincided with his proclivity to laser part his hair, and plaster each side down…

IMG_0010

 

So, having one part of his uniform on the IR (“injured reserved”), was causing him stress.  So, I reasonably asked whether or not his pants were in danger of falling down.  “ARE YOU CALLING ME FAT??!!”  Uh – no….  Then I asked him whether or not he could wait until Christmas break to get a new belt.  That idea was NOT flying…  After some conversation, we got to the root of the problem.  Although he is fastidious and dogmatic with his “The Uniform”, there were other bigger issues causing him stress and anxiety.

With exams approaching, he was worried about getting a high enough mark in math to ensure he gets admission to his chosen program at university.  Also, in the next week, he had to select all of his courses for semester 2.  So, after some calming discussion and problem solving together, he was a little more calm.

However… having said that – the next Saturday, I drove to The Shwa, with a new belt, a pizza and a big hug.

 

Recommended Reading

She's clearly under the age of 45 - where are her readers??!!

She’s clearly under the age of 45 – where are her readers??!!

If you’re Canadian, you absolutely have to read the Anne of Green Gables series… (and even if you’re not – Canadian, I mean.)  I think I read the first 3 in the series twenty times!  My copies actually fell apart!  And I’m crazy about Ken Follett (I’ve just started the 3rd book in his Century Trilogy), as well as Game of Thrones (natch!!! – is that seventh book ever coming out?!)  Greg Iles is pretty awesome too – but beware – if you start his new fabulous novel called “Natchez Burning” – beware….  It’s a trilogy and I didn’t know this when I started.  It’s like waiting for the next season of Game of Thrones to start.  All that aside, you’re probably more interested in what I’ve found helpful in my quest to understand autism.  These are my Top 10…  (starting with my Top 5 – because 10 is too much for one read…)

  1. Thinking in Pictures – and other Reports from my Life with Autism – by Temple Grandin – an absolute must-read.  She describes what it’s like to be in her head, and the ways that she’s figured out how to function and interact in a world she often does not understand.  In fact, anything written by Temple is amazing – this just happens to be my favourite.
  2. The Way I See It – A Personal Look at Autism & Asperger’s – by Temple Grandin – ditto on the above – fabulous read.
  3. Emergence Labeled Autistic – by Temple Grandin and Margaret M. Scariano – you really just need to read all of these books by Dr. Grandin.  In fact, I’m going to re-read some of these.  It’s been a while since I waded through them.
  4. Making Peace with Autism – by Susan Senator – Susan is a writer/poet/advocate who writes eloquently and sometimes heartbreakingly about being a mother to an autistic child.  It took me some time to get through this one, because she brought raw emotion to the fore – I would start sobbing and would have to put it down for awhile.  But she also communicates that it’s going to be okay.  I leant this book to a friend, who like me, has an autistic son.  She could not get through it.  She said she was “not ready to forgive it.”  I totally got what she meant…  but I also wanted some peace.  Susan’s blog is fabulous, especially if you are American – she has great insight into services that are offered in her system.  Find her at http://susansenator.com/blog/.
  5. Songs of the Gorilla Nation – My Journey Through Autism – by Dawn Prince-Hughes, Ph.D. – The best way to describe this is to quote Dawn herself:  “This is a book about autism.  Specifically, it is about my autism, which is both like and unlike other people’s autism.  But just as much, it is a story about how I emerged from the darkness of it into the beauty of it.”  Enough said…

And that’s the point, I think.  There is beauty and advantage to being an autistic person.  I’m not saying it’s not scary, or frustrating, or confusing.  You just have to find those particular gifts and celebrate them.  It has been a distinct pleasure and joy to watch Henry’s attributes and strengths grow.

 

I’m Worth It!

Beauty!!!

Beauty!!!

I’ve been quiet for some time…  It’s been a time of reflection for me.  I’ve realized that I now have the time to embark on something big – something I like to call “The I’m Worth It Project”  (cue the beautiful sunrise and the sound of angels singing!!)  This sounds simple, and something fairly obvious, but it’s not…  Like Tiny Fey or Diane Keaton telling us that we’re worth it (Nice ‘n Easy – haha), I’ve finally realized this truth.  Actually, it’s a lot nicer and easier to just go to your hairdresser than colouring at home… but I digress… (and give me a break!!  Tina and Diane are not colouring their hair at home…)

Being an empty nester at last should be a triumphant celebration.  But as you know, it has not felt that way to me.  Recently, it was pointed out to me that I’m in a period of redefining my identity.  It’s not at all different from someone who has been let go from their job.  I feel lost….  But before I can decide what I’m going to do for the rest of my life (yikes!), I need to start feeling better (as in:  healthy).

In 2009, I had a hysterectomy.  Four months after that, I found an egg-sized growth on my thyroid.  (For you fellas out there, that’s an organ on either side of your collarbone that controls metabolism and hormones).  It was subsequently removed, and thank goodness, it was not cancerous.  So – I had a double hormone whammy.  I was thrown into premature menopause.  Sound like fun?  NOT!!!!

It’s amazing what an insidious thing feeling crappy can be…  It creeps up on you day after day – you hardly realize that you don’t feel so hot.  But because I’m not being distracted by everybody else’s needs these days, it hit me.  I don’t feel good – and I’m tired of not feeling like me.

So – here I go!  Back on the Christie horse!  Let’s see where this takes me!

Peace in the Universe (Part 2)…

So, I didn’t really think there was going to be a second instalment to this story, but there is!  After our uber-successful shopping expedition, I went on the hunt for more of these fabulous undergarments!  And so, last Saturday, I made my way to the Shwa to deliver the goods.

Saxx Success!!

Saxx Success!!

Of course, no visit would be complete without the accompanying

images

The little rotter met me downstairs at the car, took the bag of underwear (plus his gloves, scarf, and too smallish winter jacket), and the box of pizza.  A big hug curb side and off he went.  That was the visit….  However, he did have a smile on his face…

Happy Hallowe’en!!!

FYI - They're shooting out their webs....

FYI – They’re shooting out their webs….

Recently, a friend of mine posted something from the ladies that bring you “Shut Up About Your Perfect Kid!”  I reposted on my timeline, but I thought it required a little more editorializing here…

“With Hallowe’en upon us, please keep in mind, a lot of little people will be visiting your home.  Be accepting.  The child who is grabbing more than one piece of candy may have poor fine motor skills.  The child who takes forever to pick out one piece of candy may have motor planning issues.  The child who does not say trick-or-treat or say thank you may be non-verbal.  The child who looks disappointed when they see your bowl might have an allergy.  The child who isn’t wearing a costume at all might have a sensory issue (SPD) or autism.  Be nice.  Be patient.  It’s everyone’s Hallowe’en.”

I have personal experience with all of these “syndromes” above.  #1 son is allergic to peanuts.  He never looked disappointed with the offerings he received, but he did later on in the night when I would pick over his haul and take out all of the offending candy.  (Later, after the kids went to bed, Left Brain and I would pig out on Reese’s peanut butter cups!)  Henry, is as you know, autistic.  The whole trick-or-treat thing confused him a little – all he liked was suckers.  But the concept of dressing up?!!!  Giddy up!  LOVED IT!!!!  I was once asked by one of the preschool teachers to please not let him come to school in a costume – because the other kids might want to dress up too!  HUH?!  This is preschool!  Who gives a s**t?!  And let’s be honest…  don’t we all secretly want to wear a cape out in public once in a while?*

Notice the cape?!

Notice the cape?!

Great friends of mine have a daughter who has CP – you couldn’t know a sweeter child.  She obviously has fine motor skills issues – and she can have as much candy from my bowl as she wants!  Her disability is immediately apparent – both of my sons’  are not – don’t assume you know what’s going on.  My children are not spoiled or ill behaved – nor am I an indulgent parent who lets their kids do whatever they want (at least not most of the time….)

As the quote states beautifully above, please be patient and kind.  Because these kids are doing the best that they can – and so are their parents.  Everybody deserves to experience the joy of dressing up and eating so much candy that you want to puke!!

Haunted house put on by the Grade 8 class!!

Haunted house put on by the Grade 8 class!!

* What would your secret super power be?  My sister can stick her stomach so far out she looks 12 months pregnant!  (She’ll be so pleased I decided to share that).  I’m not sure what mine is – this might keep me awake tonight!

Peace in the Universe

Last weekend, Brian and I travelled to The Shwa (those not in the know call this town, Oshawa).  We were delivering Henry’s birthday present to him – he was very specific about what kind of laptop he wanted, and what his technological requirements were…  hence, the delay in getting him his birthday present (one month late).  As well, he informed me that he needed new running shoes.  This, despite the fact, that I asked him this very thing before he left for college.  So, it appeared – we would be going on another shopping expedition – and this time, in unfamiliar territory.  You know how I love to shop…. (see earlier blog, “Please Don’t Make Me Go….)  Even more surprising – Left Brain volunteered to come with us.  Don’t tell me he isn’t feeling the Empty Nest Syndrome.  The last time that Left Brain and I went to a shopping mall on a Saturday afternoon was NEVER!!!  So be it…

Henry tells me that his old running shoes were hurting the back of his heels.  I found out, to my horror, that in the meantime, he had been rocking that sporty look of sandals with white socks!

At least his pants aren't this short!!!

At least his pants aren’t this short!!!

Egad!!!  Now I’m all for individuality and not caring about what other people think, but come on!!!  This is a definite fashion faux pas!!!  He said nobody cares what he wears on his feet – ah… yes, they do – they’re just too nice to say anything to you about it.  But I keep this thought to myself.

So off we go to the mall – with the rest of the entire town it seems.  There is no parking of course.  Left Brain meanders with a bewildered look on his face.  I suggest that he drop us off so we can get a head start and then he can catch up.  But he’s afraid of getting lost – uh – isn’t that what cell phones are for?!  But again, I exercise the restraint of a saint and keep this thought to myself (I picture Left Brain rolling his eyes at this).

So we find the Sportchek quickly – I zero in on the shoes that come in double wide.  We settle on a couple of pairs of Merrells.  As we’re leaving, Henry is diverted by the Under Armour display.  Last Thanksgiving weekend, I noticed that Henry had already gained his Freshman 15…  Everything is annoyingly convenient and close on campus – he’s not walking like he used to or climbing the 3 flights of stairs to his room about 10 times a day.  He said, “No – I’m just big boned!”  OK – well – he’s grown two new bones around his midsection!  So he suggests that he buy some shorts and t-shirts.  No problem.  This is going well!

Next, I’m diverted by the Saxx display*.  Let me explain, lest you are unfamiliar with this revolutionary new product.  These undergarments for men have compartments that separate the “boys” – so they don’t get all sweaty or mashed in together.  Honestly – how guys walk around with those things banging around in their pants is a mystery to me.  I wouldn’t be able to concentrate on anything!!  So, after a cursory look by Henry, we buy them.  (A test run is mandatory – these things are slightly expensive and non-returnable).

Good news…underweartextAll is right with the world – there is peace in the universe!

* Was going to post a picture of these stupendous underwear, but all of the images featured young men with substantial packages and 6-packs.  I could hear “Mrs. Robinson” playing in the background – decided to pass…

 

The Morning After…

Was Henry seeing this after all of those tests?  I might have been....

Was Henry seeing this after all of those tests? I might have been….

The days after our diagnosis were somewhat numbing.  It was also a time of reflection.  What did we need to do?  What had we already done?  Always listen to your intuition – nobody knows your child better than you!  Here’s what the team recommended:

  1. Henry should continue to receive speech therapy.  (Well duh…  We started him when he was         3, when he began junior kindergarten.  Of course, at the time, all of the speech therapists that were on the list for subsidized therapy had a 2-year waiting list.  So, we had been going once a week, for an hour, at approximately $100/hour.  Incidentally, we went until he finished grade 8 – you do the math…)
  2. We were told that he was well served at The Dunblaine School.  There was a social worker at school who ran a Social Skills group, which he was encouraged to participate in.  (Again, duh….  The school developed an individual curriculum, based on Henry’s needs.  Of course, getting into the school initially was a bit of a challenge, but that’s another blog post…)
  3. Continue to use a Direct Instruction method.  This approach emphasizes repetition and mastery, both of which were necessary for Henry to learn and consolidate new material.  (Boy – they’re not kidding!  We were beginning to despair that he might not learn to read, after 2 years at Dunblaine, but then it just started to kick in!  We weren’t sure that he wasn’t learning to read by memorizing a whole vocabulary!)
  4. Get an appointment with a paediatric neurologist.  Numerous people had mentioned Henry having staring spells.  They wanted to make sure that he didn’t have a possible seizure disorder.  (Whaaaat?  Holy Cow…  Decided to do a “Scarlet O’Hara” and not think about this today – I’ll think about that tomorrow…)
  5. Contact The Geneva Centre for Autism.  (I did this the next day.  They had great workshops for parents – to educate me – and social skills “classes” for Henry.  I took many courses and Henry participated in his social skills building classes for at least 5 years.)
  6. There was a list of books that were suggested.  (I’ll supply you with my favourites in another blog post.)
  7. This next recommendation I’ll quote verbatim; “Given Henry’s attentional concerns and his low average/borderline scores on our measures of visual and verbal attention, continued follow-up with Dr. “X” is recommended.  In addition, those working with Henry may wish to modify his environment somewhat, to facilitate his attending capabilities.  This may involve having him sit in a non-distracting part of the classroom (there is no such thing, by the way…), ensuring that eye contact is established prior to giving instructions or directions, periodically asking Henry (as well as other students, so that he doesn’t feel singled out) to repeat or paraphrase what is expected of him, and/or occasionally making eye contact with him so that he knows that the teacher is watching him.”  (OK – this one is a biggie…  Fortunately, because his school was for kids with learning differences, his teachers knew most of this.  But for every other activity that I took him to, I needed a sit down with the instructor to make sure they understood what they were dealing with.  This encompassed swimming lessons, karate, art classes, and summer camp – some of the instructors “got it”, and sadly, others did not.  Many of you parents who are in the same boat are nodding your heads….)
  8. Henry was encouraged to break down tasks into smaller, more attainable goals.  (Good advice for all of us – it’s like being told you have to lose 30 pounds.  Worry about the first 5, and then go from there.)
  9. There was a suggestion that certain medications might be tried to help with Henry’s attentional difficulties.  (This is another saga that I don’t have the strength to go into at the moment.)
  10. There is no 10 – but who ends a list at 9?

And so – we began.  A lot of what we had already been doing was correct.  But you must not question yourself constantly and worry about the end game.  That’s far too daunting and scary – we plodded along and pushed the peanut – celebrated our small victories and continued to work on the challenges.

 

The Second Time Around – Part 3…

I definitely need the couch after this....

I definitely need the couch after this….

If this is getting tedious, I do apologize.  However, it does serve to illustrate that going through this process is laborious and requires perseverance.  At the end of Part 2, we had been referred to another department at Sick Kids Hospital.  This is where the real work began….

Just so you know – when you pursue any kind of assessment, there are long questionnaires that need to be completed.  So – after an initial consultation with the doctor, there was homework for Left Brain and I (mostly me) to complete.  Then a long interview while the doctors looked over the questionnaire and clarified any of their questions.  Then began the appointments with Henry.

He was seen at least 4 times for over an hour each.  Henry dreaded these appointments – although he was used to his usual speech therapy appointment every week, these dates were an exercise in frustration for both of us.  I came armed with toys and treats to get (and keep) him there.  One appointment, he became agitated because I had forgotten his Woody doll in the car (which he dragged around for about 3 years).  I didn’t try to talk him out of it – I immediately got my coat and boots back on (this was the dead of winter) and walked back to my car where it was parked a fair distance away to retrieve his friend.

So – after all of these appointments, finally, the diagnosis.  Henry’s teacher came with us (Left Brain and I) so that she could understand his difficulties as well.  I reasoned that the whole team should be there.  And then the terrible, horrible news…  Because up until that point, there is still the dream of unlimited possibilities….

Autism Spectrum Disorder (ASD)…  Finally – now we know.  I am numb, but manage to keep it together during the appointment.  Outside, Brian and I talk for a few minutes.  He’s trying to console me – he says, “This is good – now we know what we’re dealing with.”  He’s right of course, but he’s also wrong….  Men always want to solve the problem – in his mind, at this point, the problem is halfway solved.  But I’m heartbroken – and scared; and worried.

Afterwards, I sit in my car and sob.  I need to get it out – just for now.  I do not give myself the time to grieve – yet.  That comes many years later.  Then I do what I always do with a problem – take it step by step.  So, I drive to the nearest bookstore and pick up some books on the subject.  Brian’s concerns at this point are different.  He goes to his office and checks on the trust that we set up for Henry at birth (for his education at that point), and tries to ascertain whether we will have enough money to support him for the rest of his life!  Many of our decisions after this point are predicated on whether or not there will be enough for Henry, if he needs it…..

And so the real work begins…