Tag Archives: diagnosis

The R Word

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“Are you retarded?” Or how about the ever popular, “You’re such a ‘Tard….” (Had to capitalize that – my computer kept correcting it to yard…) We’ve all heard these before – perhaps these days in the schoolyard, or searching back, in our childhoods.

So – when is it okay to call somebody retarded?

Recently, a FB friend posted a video by Elizabeth Plank, who asked this very question. She is a Senior Editor at Mic, a leading news and media company for young people. I’ve included the video – it’s a short watch. She interviews a young man who has Down’s Syndrome, and who also happens to be gay. She also interviews his Mom. He is a delightful, joyful, artistic, enthusiastic young man and I can’t imagine that he hasn’t brought anything but a great deal of joy and happiness to his family.

Out of curiosity, I googled “mental retardation.” The Wikipedia definition is as follows: “Mental Retardation, also known as intellectual disability, a disorder characterized by significantly impaired cognitive functioning and deficits in adaptive behaviours.” Okay – so that’s the technical definition. Down’s Syndrome is “typically associated with physical growth delays, characteristic facial features, and mild to moderate intellectual disability.”

If you have a child with special needs, and particularly, a child with developmental delays, you are definitely familiar with the DSM-5. This stands for the Diagnostic & Statistical Manual of Mental Disorders, 5th Edition. This is the go to manual for figuring out what your kid’s deal is; the Bible as it were (if you’re into that). Interestingly, there is no definition in this manual for mental retardation. First of all, to characterize someone as “retarded” is too non-specific (in a clinical sense). But I did look up Autistic. The definition is; “These disorders are characterized by social deficits (check) and communication difficulties (check), stereotyped or repetitive behaviours (check) and interests, sensory issues (double check!!), and in some cases, cognitive delays.” So – this last part is very important. If your child is autistic, there may or may not be cognitive delays. Hence – my concern regarding the whole “retarded” moniker. There are many ugly words out there – they can hurt so much more effectively than a quick jab to the chin.

When Henry was young, people would ask me what was “wrong” with him? Can you imagine doing that to a stranger? Imagine how I felt…. I would mumble something about a speech delay, while inside I was screaming… “I DON’T KNOW WHAT’S “WRONG”!!!! WE ARE HAVING HIM SEEN BY SPECIALISTS AND NOBODY CAN GIVE US A DEFINITIVE ANSWER!!! DON’T YOU THINK I’M TRYING AS HARD AS I CAN?! DON’T YOU THINK HE IS?!” And then I would continue on as quickly as possible – my mind a whirling dervish of thoughts.

When people casually and carelessly throw out words like “retarded”, they have no idea how hurtful they can be. I know how hard Brian and I have worked to try to get Henry to where he is today. And the amount of work that it takes for Henry to navigate his way through a world that is too often judgmental and conformist is staggering. I can only imagine it…

So – when is it okay to use the word “retarded”?

Never…

-PAXP-deijE

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The Morning After…

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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…

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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…

The Second Time Around – Part 2…

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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 Second Time Around…

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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…

Dreams

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Castle of my Dreams

Castle of my Dreams

You know that dream where you’re running away from the giant, all while trying desperately not to trip on that ribbon-streamy thing that’s attached to your crown (because of course, I’m a princess in this dream….)  It goes without saying (no pun intended), that you can’t scream in the dream.  You finally reach the castle and are hiding in a small room with one of those slitty windows, and the giant’s eye appears in the window.  You’re still trying to scream of course, and then a big hand comes around the corner to grab you…. What?!  You’ve never had this dream?  Puh-lease….  I don’t think I want to know what this dream says about me.  But anyways, I wake up before the hand reaches me.  I’m in my bed, with my husband beside me (snoring or buzzing – he disputes this…) and I’m safe.

When you receive a diagnosis of autism, the “dream” that you had for your child changes.  No longer the rosy outcomes of Little League, graduation, college, marriage and grandchildren – the “normal” stuff that parents think about when they’re holding that beautiful little thing in their arms.  Everything is uncertain.

The first thing that I thought about when we received Henry’s diagnosis was this…. I felt so sorry for this little kid who had been trying so hard to have his needs met.  It’s like he was in a foreign country where he didn’t know the language – can you imagine how frustrating, hard and tiring it would be every day to try to communicate with the world around you?

The next thing was sorrow… I sat in my car and sobbed for at least 30 minutes.  Thinking of it now makes me cry…. I was so scared – what did the future hold for my son?  Would he ever be able to make it through school?  Live on his own?  Find a partner who would appreciate and love him for all that he is?  Would he always face discrimination and prejudice from those who just didn’t “get” him?

But here’s the thing about dreams…. That first one has been replaced with this – I’m dreaming of Henry graduating from high school (he will – with honours); I’m dreaming of him going to college and living away from home (he will be in September); I hope that he will find a career that fulfills him; I hope that he will live independently and happily and finally, I’m sure he’ll find someone who will love him for all that he is… because once you’ve met Henry, you love him!  And as far as him facing discrimination, I can only hope that the more the world is educated about the unique gifts that autism has to offer, he will be embraced and appreciated.

There is a quote that goes:  “We must be willing to get rid of the life we planned so as to have to live the life that is waiting for us…”  Always be willing to let the new dream take hold.

 

Why Now?

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Why not earlier – when Henry was younger?  Certainly my recollections would have been much clearer, my emotions that much more raw and real, if you will….

Firstly, Al Gore and I had not invented the internet yet…. (hahaha).  At the time, I kept a “Gratefulness Journal”… remember those?  Sometimes I was very grateful for a bottle of wine in the larder!  I was so immersed and consumed with getting through each day that reaching out to a wider audience did not even occur to me.  How could I help others when I had no idea what the hell I was doing?!

I have been thinking about doing this blog for about 2 years.  I held back because I wasn’t sure that I wanted to relive it all.  It was a confusing, frustrating, heartbreaking (sometimes) and utterly draining (sometimes) experience.  It was also joyful, fulfilling and one of the happiest times of my life.  I absolutely loved being a stay at home Mom (or domestic goddess, or work without pay technician – although Brian would dispute the pay bit…)  I had also been fearful about being “responsible” for others’ problems or experiences….  There are so many out there whose situations are so much more bleak than mine ever was.  But – I can only hope that some story or tip that I might be able to pass on might help someone who is going through a similar experience.  I had a support system – my husband, my friends who “got it”, and intermittent help from my family.  What if you don’t?

You may have noticed that many of my stories have a humorous tilt to them.  First of all, I tend to see the funny in many situations – but – and this is a big but – I’m able to laugh at a lot of these old stories because I now know how the story has turned out.  Henry is doing very well – we are still married – and we didn’t damage our other child irrevocably in the process (at least, I don’t think we did – I guess we’ll find out if he’s going to therapy in his 30’s….)

Please let anybody know about this little blog if they are struggling with a challenging child.  Who knows… it might help!