Tag Archives: autism services

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!!!

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The R Word

images

“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

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…

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…

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…

Welcome to Holland

Welcome_to_Holland

I thought this would be a good follow up to Dreams…. I received this story as part of a package at The Geneva Centre for Autism shortly after we received Henry’s diagnosis.  It’s a fairly accurate synopsis of what it’s like raising a child with a disability.  It’s author is Emily Perl Kingsley, c1987 (All Rights Reserved).

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say.  “What do you mean Holland??  I signed up for Italy!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy.”‘

But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.

So you must go out and buy new guide books.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there.  And for the rest of your life, you will say “Yes, that’s where I was supposed to go.  That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things… about Holland.