Tag Archives: special needs education

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…

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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….

IMG_0073

 

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…

Moving Up – Part 2…

So, it’s Sunday night…  We moved him in this morning.  Henry was tense – I was tense.  He was “snappish” with me – although, to be fair, trying to put a duvet into a duvet cover is an exercise in patience and frustration…

When we left, he walked out to the car with us, where there were prolonged hugs.  I got in the car and started driving, and thought – OK!  I’m good!  This is an exciting time for Henry and a new chapter for me (and Left Brain).  This is what you work for, right?

We decided to golf today – why not?  Beautiful day – no reason to have to rush home…  We met a group of friends who immediately asked about Henry – thankfully, I had my sunglasses on.  The problem with writing a blog is that everyone knows what’s going on in your life – which is also a good thing.  But today – all I could do was nod – “yes – Henry’s good – I’m fine” – and then I had to go to the bathroom where I began to cry in a piteous way.  And I’m afraid I’m one of those “ugly criers”…  I had to do this privately.  Once recovered, I rejoined the crowd (with my sunglasses firmly planted on my nose – no need to share my swollen, red, puffy eyes…)  Later, my eyes would be red and puffy because of the pathetic “play” on the course, but that’s another story…  Just as an aside, I have to send big thank you’s to all my Mom friends, who have been so supportive and understanding during this time.  They all “get” what a big thing this is for Henry and for me.

I kept my phone on today, just in case…  Henry hardly ever calls me, unless there’s a money emergency!  He called three times today.  I was pathetically glad to hear from him.

So…. my baby’s gone for good.  But even worse, what if he comes home?  Will he make friends? Will he leave his room for fun stuff, and not just to eat?  Will he have a good time?  When you’ve spent so many years controlling an environment for your child, this loss of control is excruciating.  I know I have to let go, but jeez – it’s hard.  I have a headache – think I’ll take two Advil and go to bed….

Moving Up?

Wasn't sure whether the Clampetts or Jeffersons should be used for this blog...

Wasn’t sure whether the Clampetts or Jeffersons should be used for this blog…

We turn the corner into the driveway – it has become a familiar drive – and I have an overwhelming sensation of wanting to throw up!  This is something that I haven’t felt since pregnancy, and/or an unfortunate experience with Harvey Wallbangers…..(and Long Island Iced Teas… in fact, any drinks whose syllables are longer than 3 should be avoided altogether – but include in that category wine which is being “refreshed” by your brother-in-law, who has decided that food is an unnecessary distraction!  But, I digress…)

I am moving Henry into residence today.  I’m so conflicted….  We have been working towards this goal for almost 19 years – I’m not sure we’re ready… (Henry and I… not Left Brain (he says he’s looking forward to some quiet in the house – I may have to become obnoxiously loud).

So – let’s talk about Henry first.  He is at turns very excited, and then lashing out at me.  The lashing out is always explained by him…. “I’m under a lot of pressure right now Mom…”  SO AM I, I want to shout…  Back to yesterday…  We paid extra so that he could move in early, before the throngs of kids who will be coming on Sunday and Monday.  I had prepared and purchased everything that I thought he would need (see earlier post, “Please Don’t Make Me Go….”)  If he was missing anything, then I would have time to get it before his official move-in date.  We forgot a few things at home (my fault – I should have checked exactly what he was packing in the car…)  After a bed check – this one is too soft – this one is just right;

IMG_0071

we began to put a few things up on the walls.  I bought some of those sticky things that don’t mark the wall.  And they don’t mark the wall!  But they also don’t stick the desired poster to the wall!!!  Figures!  So Henry laboriously peels and sticks 50 more little squares to adhere his calendar (so he can stay organized) to the back of the thing and then repositions it on the wall.  Two minutes later – clunk!  Not working – whereupon he’s about to launch into the stratosphere.  I am making a list as we go along to note anything that we need, or isn’t working.  When he’s calm (sort of), I show him the list so he’s reassured that we won’t forget anything.  Also, so he can contribute anything that he thinks is necessary!

Now… how am I doing with this transition?  I don’t know yet – we’ve been so busy this week that I am at turns agitated (read:  can’t sleep), and then so exhausted I sleep straight through with no remembrance of dreams.  Of course, I can hardly recall my name when I wake up, but that could be a menopause thing…  One of my BFF’s asked me this morning whether I needed a hug… I said yes, but declined because I was afraid I would start crying and not stop.  I called my Mom and Dad today (it’s their 55th wedding anniversary – way to go!!!  that’s a looong frikking time….)  She remarked that I’d probably have a great weekend (number one son left today as well).  I said, “Noooo – I don’t think it’s going to be a great weekend….”

We move him in permanently on Sunday.  I’ll let you know how it goes….