Tag Archives: autism

“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.

 

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

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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!

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…

I Guess That’s Why They Call It The Blues

OK - I know the song is not from this album, but it's the best artwork....

OK – I know the song is not from this album, but it’s the best artwork….

I’ve had a shitty week – there’s no other way to sugar coat this.  I’ve been seriously disappointed by some colleagues, and that’s not a life lesson that I needed to learn.

So, I had an overwhelming urge to talk to my kids.  Henry always manages to make me laugh (even though he’s not always trying…)  I called him first.  “Hi Henry…  I’ve had a rotten day and I called to get cheered up.”  “WELL YOU SHOULDN’T HAVE CALLED ME THEN!!!!  Because I’m having a bad day too!”  OK then…  Guess we’ll talk about this later.  Coincidentally, John (#1 Son), was driving through town on his way to Guelph for homecoming.  And of course, there was a required stopover for cash…  But I have to say that #1 Son is a great hugger, and I felt better after he’d been through.

How do we deal with the blues?  On this occasion, I felt like I’d been through a battle – I was exhausted.  I needed to sleep, but couldn’t.  And when I could sleep, I’d wake up with the same dark feeling.

I’ve reconciled myself with what happened to cause this feeling.  I need to move on with my life and I refuse to let this get me down.  I’m blessed to have a partner who is unwaveringly supportive and loving – Left Brain’s “Momma Bear” instincts came rushing to the surface to protect me.  He was as wounded as I.  So, as a team, we, and I will prevail.

Does Henry know that he is not on his own?  When he’s feeling overwhelmed, anxious, agitated and/or “down” – does he know that all he has to do is reach out?  This worries me – he’s made some friends/acquaintances, but I don’t think he’s surrounded at school by people who always have his back.  I plan to connect with his disability advisor in the next couple of days to get a sense of how she thinks he’s coping.

And what was bothering Henry when I called him?  He’d been assigned a partner to do an assignment in one of his classes.  He could not connect with this other student, and was stressing about failing an assignment.  In the end, he completed the assignment on his own and handed it in….

The Second Time Around – Part 2…

3Rs

I left you after we had consulted an educational consultant for options of elementary schools.  We found a wonderful school, called The Dunblaine School, where Henry began his “academic” career.  This school is a place for children with learning disabilities, which encompasses a whole grocery basket of learning differences.  The first year of course, was chaotic.  New environment, new kids, new teachers.

The second year in, his teacher (same one as first year), met with us and encouraged us to get a diagnosis for Henry.  His teachers needed some guidance in how to help Henry.  A lot of the kids that were enrolled in the school, already had a diagnosis.  In fact, when meeting other parents, you quickly got to the “what does your kid have?” part.  When I vaguely talked about a speech disability, a Mom who became a very good friend, said, “Ah…  he’s NYD.”  In the world of short forms, (ADD, ADHD, OCD, ASD/PDD), I was confused.  I had not heard this one.  “What’s that?”  I asked.  “Not yet diagnosed,” she replied.  Yes – it was time to find out specifically what the trouble was – not some half-assed, vague language/speech difficulty.

I began with my family doctor.  She knew about a reading disability study that was being conducted at The Hospital for Sick Children.  She thought it would be helpful to participate – although it was a significant time commitment.  All of the members of our family had to be assessed.  But she reasoned that it was a back door way of getting into this department and having Henry assessed by the best.  She also referred me to a consultant paediatrician, who specialized in ADD/ADHD.   Let’s start with the Sick Kids study.

I just read over that report again.  It makes your head spin.  First of all, I tallied the number of “tests” that were administered to try to gain an understanding of Henry’s difficulties.  I counted 33 tests!  This kid was 8!!  Can you imagine sitting for any period of time and taking 33 different tests?!  Anyways, out of the 33, he was above average in 5 of the tests, and average on 4 of the tests.  If you’re doing the math…  that means he was well below average on the remaining 24 tests; many of them below the 1st percentile…  If you’re a parent – how would that make you feel?  I felt like throwing up on the spot!  And scared….  Even reading this report again after 11 years, I feel light-headed…  And they reported that his answers on some of the tasks were nonsensical.  An example:  He was asked, “What must you do to make water boil?” and his response was, “with some blood so I make it into poison.”  WTF??!!  I mean – did the clinicians think that this kid had no sense of reality or his parents were devil worshippers?!  I can only surmise that when Henry felt stressed, he mentally checked out into his own little world and was maybe recalling some reference – and let me tell you – he was stressed almost every day.  If you have processing difficulties and you’re in school all day trying to decode what the hell people are trying to tell you, aren’t you going to “check out” on a regular basis?

So…  were we freaked out?  Yeah!   But since this study was not to provide an assessment, they could not give us a diagnosis.  But what they did give us was a referral to a Psychologist, who had a practice in Developmental Clinical Neuropsychology (yikes!)  So…  here we go again…

 

The Anxiety of all the Newness….

So, this past week, I checked in with Henry – I am making a conscious effort not to call him too much – he’s told me that I’m being annoying…

We had deposited a significant amount of money into his account so that he could purchase his books.  Then we had to wade through the bank’s policies regarding how much he could take out in one day or one week…  We will be getting him a credit card to deal with such contingencies in future.  However, we did ask him for an accounting of the books thus far.  It turns out that he didn’t need quite the amount he had originally asked for.  In fact, he only needed about half the amount.  Now – most people would think they had been scammed…  But Henry does not have these artifices – he doesn’t know how to lie and if he tries, his face becomes so contorted that he gives himself away in a nanosecond!  But by his reckoning, the money was already there, so why mess with that?  (Take a moment to think this over, if you like…  a sip of coffee or bathroom break…)  I know that that logic made perfect sense to Henry, and indeed, probably to any teenager/young adult.  He was flabbergasted that we would expect the overage back!

So, then on to the next phase of our conversation, which was – he was spending cash on purchasing meals on campus.  This after a significant investment in a food plan – which is mandatory when you live in residence.  After a confused and panicked exchange of words, in which I directed him to get a little more information about where he could use his student card to swipe for meals, we hung up.  After which I received this text….

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Now – I’m no Svengali or mind reader, but I think he was upset!  So I called him back (obviously before Henry’s recommended time period).  He was extremely upset and sounded on the verge of tears.  I calmed him – let him know he was not going to starve; that we would work out an acceptable allowance; that he would have enough money to get by; that we were all figuring out this new situation and we would work it out.  News flash…  There is a happy ending…

IMG_0074

The Second Time Around…

I just love Nespresso!!!

I just love Nespresso!!!

Get a cup of tea or cappuccino and get comfortable – this post is going to be long…  This has been a very busy summer.  I’ve been on a lengthy paperwork trail.  It’s tedious and time consuming – but a necessary evil.

One of the things we had to accomplish this summer was another psychological assessment for Henry.  I had suspected as much when we began to apply for colleges.  Henry’s previous assessment was 10 years old – he was 8 when we had it completed.  First, let me tell you about that journey….

I’m often asked, “When did I know something was “wrong” with Henry?”  I don’t think that the word “wrong” is accurate.  I can tell you this….  I knew that he was a very difficult baby!  He never seemed to sleep – except on top of me!  When I tried to lay him in his crib, he would wake up and bellow – whereupon, the whole rocking, trying to fall asleep business would start all over again.  When he woke from naps or in the morning, he would cry for at least 30 minutes – nothing could soothe him.  And he wouldn’t take one of those soothers – every time I desperately tried to plug him with one, he would spit it out!  He hated transitions… (enough said on that subject!)  He didn’t seem to feel heat or cold… or pain – which really freaked me out!  His food sensitivities seemed to start when I cut off the bottle.  He was obviously a late talker – you really couldn’t understand anything until he was 5.  But did I know something was wrong?  Not really…  until preschool.

Where's the couch??

Where’s the couch??

His teachers expressed concern…  He was apparently staring off into space while the rest of the children were engaged.  There were some incidents of him acting out (that’s politic speak for hitting, tantrums, etc.)  It got to the point where I sometimes dreaded picking him up from preschool – with one of his teachers approaching me with a quasi-smile to tell me of the latest incident.  So – I started with some consultations.  Before preschool, I had consulted some specialist because he was in his hitting/biting phase (at that point, hitting and biting me when he was frustrated – which was frequently).  I had no idea what to do.  The books were useless…  There was no internet.  I received some excellent advice at this time.  Then after he began preschool, I was referred to the public agency that “does” assessments.   But before they did that, there was a hearing test administered (something that Left Brain has insisted I do recently because I can’t understand his mumblings…)  It was actually pretty funny watching him behind the glass – he couldn’t say yes or no or lift a finger but he kept looking left and right for the sounds.  The good news was – his hearing was perfect.  But you might be horrified to learn that I almost started crying.  Because if his hearing was okay, then what was wrong?  They then saw him (after a lengthy wait list to get in), for a total of 30 minutes – this with a break in-between…  I was given a one-page, 3-paragraph report that stated he had a speech disability.  No shit Sherlock…  Not helpful.

We decided that Henry was not ready for elementary school at that point and enrolled him in another year of senior kindergarten.  Henry was born in September anyway, so wouldn’t be that behind his peers.  I consulted an educational consultant to try to find an appropriate school for him.  I basically quit everything that year…  I used to play competitive tennis – not only was it a wonderful respite, but I enjoyed the social aspect of it and hey – it’s fun to be good at something that’s only about you.  She did not give me any kind of diagnosis, but was helpful in finding us some options.  Now to get those schools to accept him – but that’s another story….

By the way… just so you know?  This has been an incredibly hard blog to write – I’ve been taking breaks constantly…  It’s hard to relive this and to try to accurately describe what this time was like.  So I’ll pick up the story in another instalment…