Monthly Archives: October 2014

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!

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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…

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….