Monthly Archives: September 2014

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…

 

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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…

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Something Wicked This Way Comes….

Spooky....

Spooky….

I’ve been hacked!  I feel so violated!  What a total pain in the neck – and no – I am not currently trapped in Kiev with no money to get home.  AAARRRGGGHHH!!!

Left Brain warned me some time ago about hitting links on benign looking emails.  It’s not that I don’t heed his advice (haha – he would probably dispute this).  Let me set it up…  Henry turned 19 a week ago.  My parents wanted to send him something and of course, he is living in residence now.  I sent him an email requesting his address – which I think I’ve done once before in our lifetime (sent him an email, that is).  Anyways, he sent me back a reply with a YouTube link.  Bizarre, you say?  So did I.  But Henry can be bizarre…  So I hit the link.  Oops!

So now I’ve been compromised.  What’s the moral of this story?  Don’t be a doofus and hit links mindlessly.  And I still don’t have his address…

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….