Tag Archives: special needs education

An Unscheduled Visit…

“Mom?” His voice is shaking – I know he’s crying – or trying really hard not to. “What’s up bud?”

It’s 6 a.m. – I’ve been up for an hour and a half. It’s too early to put out the garbage – I’ll wake up the neighbours with the rumble of the bins. I’m trying not to touch the side of my mouth or the inside of my nose – I have cold sores brewing. How am I doing otherwise? Just peachy…

We’ve gone from a nervous start (at university), to dropping a few courses to lighten the load, to considering dropping out for the semester. Left Brain and I have had several visits for discussions with Henry about his options. I’ve had many more visits with advisors and counsellors to look at alternatives.

Henry was so proud and excited when he started school (was it really just 3 weeks ago?) Then he started doubting himself… Could he do it? Did he make a mistake? Could he handle the load?

Then a Chemistry Lab with an impatient Teaching Assistant, who got mad at him for asking questions (!!!) How does a teacher get mad at a student for asking questions???!!! Isn’t that what we tell our kids to do when they don’t understand something? Isn’t that what teachers are there to do? Teach?!

So… now we’re trying to figure out how Henry can stay at school – because he loves being independent… But he’d have to stay in class – and as he said the other day… “How long are you going to make me suffer through this?” We know we can switch to something else for January – but what do we do in the meantime?

So… we are trying to avert a nervous breakdown in our son. And give him options to make him feel confident and excited again.

And who’s preventing my breakdown, you might ask? Thank God for Left Brain….

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Dance Like No One’s Watching!!!

Dance with abandon – with joy – with a carefree spirit! Dance like no one’s watching. Because you can – and you should when there is something worth celebrating. And this is how I feel.

I'm a dancing fool!

I’m a dancing fool!

Now – just on the dance… I did try to upload the Elaine dance from Seinfeld, but I couldn’t find a clip that didn’t come with ads. And I must say – I do a mean rendition of the Elaine dance – but I’ve had to pull back on some of the moves, because I don’t want to put out my back!!!

So – why am I so happy?! Is there a calorie-free chocolate fudge sundae out there? Have I discovered that I actually can eat Blizzards whenever I want without retribution on the scale? Did I shoot 72? Uh – no…. This is even better. We made it!!! Henry and I – that is.

First – Henry. He made it through his debut year of college. He passed everything and gained entry into his program of choice at university. And what is the program? Biological Science… Holy Cow!!! He had to maintain a combined average of over 70% in the math and sciences to get into this program. And this is the kid that I wasn’t sure was ever going to “get” math. When I think of the hours we spent trying to figure out how to explain math word problems. Talk about a double whammy!!!

And he managed residence and living on his own. Was this without some anxiety spells and many calls home? No – but who cares? He stuck with it, put his nose to the grind and got it done.

Secondly – me. My first year with an empty nest. Did I shrivel up and die? Did I drown myself in a mountain of Oreo’s? Although I wanted to at times, instead, I embarked on the “I’m Worth It” project (see https://mypuzzledlife.com/2014/11/). I’m down 30 lbs. and feel fantastic. I feel like me again – when there was just a me. Now I have Super-Duper Me, plus my wonderful boys (FYI – that’s the kids and Left Brain).

So – hooray for Henry! I’m so proud of this kid. So I’m dancing like no one’s watching!!!

A Bump In The Road

Watch Out!!

Watch Out!!

A couple of weeks ago, Henry was jazzed!  A friend of his from camp had been accepted to his college for next year.  They hatched a plan…  They would be roommates.  Great – I’m thinking – a known quantity….

Then of course, I started asking specific questions.  Has she even asked her parents if this is OK?  Doesn’t she want to live in residence for her first year?  What is her budget per month?  He tells me she’s flush!  She has a job – so no problem!  Of course, Henry’s idea of flush is $100….

We started some research into 2-bedroom apartments in the bustling metropolis of The Shwa.  Surprisingly (but maybe not – this seems to be a trend for college/university towns)…. a 2-bedroom apartment is quite expensive.  Then he said, OK – I’ve talked to my friend and we’ll get a 1-bedroom and take turns sleeping on the sofa!  Uh… no.  That would get old pretty darn fast. Then – the proverbial bump in the road…

Her parents don’t think she’s ready to live on her own (she is also on the spectrum).  And then I find out that she lives in a nearby town, so can bus to school.  Not surprisingly, Mom wants her to live at home in her first year at college.  So – what’s the big deal you say?

Well – kids on the spectrum don’t make friends easily.  In fact, upon gently quizzing Henry, I find out that he has not really made any friends.  Acquaintances and congenial classmates – yes.  But somebody that he would feel comfortable asking to be roommates with him?  No.  So – aren’t there housing campus services that would help him find a roommate?  Yes – there are.  But would you trust an unknown person, arranging for an unknown roommate for your kid with special needs?  No – I didn’t think so.

And this makes me feel very bad for Henry… and sad.  I have lots of friends that I can call on in times of need – but my son does not.  I don’t need things to be easy all the time – but do they always have to be so damn hard?

 

I Can Do It “By My Own”

He is, indeed, doing it "By My Own"...  nothing a hose couldn't take care of after!

He is, indeed, doing it “By My Own”… nothing a hose couldn’t take care of after!

“By My Own…”  This is a phrase that Henry used regularly when he was a little guy.  He couldn’t quite get the phraseology right…  I would patiently remind him that it’s, “I can do it on my own,” or the ever popular, “I can do it by myself.”  But I’ve gotten used to the By My Own phrase – because he still uses it.

Towards the end of his last semester, he was required to pick his courses for semester 2, all while studying for exams for semester 1.  Was he stressed?  Uh – yeah!!  He is registered with the Center for Students with Disabilities and has an advisor.  As well, we connected with his guidance counsellor so that he could discuss his options.  So – courses were picked, he studied and wrote his exams.

Fast forward to his return to school.  His first week back, he attended one of the selected courses, Chemistry, and decided he didn’t like the class (or the prof, or the vibe or whatever…)  So he wanted to drop the course to lighten his load – given that he’s taking two math courses this semester (and math is always a challenge) – this would give him more time to work on math.  Great idea…  But let’s meet with your guidance counsellor or disability advisor first just to make sure we’re making the right move.  He agreed.  And then could not get a meeting fast enough before his next Chemistry class to drop the course.  Anxiety and a sense of urgency (on his part) started to set in.

But here’s the thing…  Certainly, there are many things that we can all do on our own – but we don’t have to.  There’s absolutely nothing wrong with asking for help.

On Wednesday morning, my lower back spasmed while doing a yoga pose.  And you can bet that I didn’t hesitate to ask for help and call in the professionals as soon as I got home!!  But it took me a long time to learn this lesson – it’s NOT a sign of weakness to ask for help!!!  For a 2-3 year period when I was looking for a school for Henry, and then we began the arduous process of trying to get a diagnosis for Henry, I became slowly and more overwhelmed.  After his diagnosis, I had a crisis of sorts.  It all caught up and came crashing down.  It was at this time that I sought help – and realized and learned in the process, that I needed to ask for help.  (This is a long story and worthy of several posts….)

We ALL need help from time to time.  There is absolutely nothing wrong with getting a team together to achieve a desired goal.  How about peace of mind?  So…  Henry; and I; will continue to do it “By My Own”, with help.

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 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…