Tag Archives: resources for autism

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….

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

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…

Recommended Reading

She's clearly under the age of 45 - where are her readers??!!

She’s clearly under the age of 45 – where are her readers??!!

If you’re Canadian, you absolutely have to read the Anne of Green Gables series… (and even if you’re not – Canadian, I mean.)  I think I read the first 3 in the series twenty times!  My copies actually fell apart!  And I’m crazy about Ken Follett (I’ve just started the 3rd book in his Century Trilogy), as well as Game of Thrones (natch!!! – is that seventh book ever coming out?!)  Greg Iles is pretty awesome too – but beware – if you start his new fabulous novel called “Natchez Burning” – beware….  It’s a trilogy and I didn’t know this when I started.  It’s like waiting for the next season of Game of Thrones to start.  All that aside, you’re probably more interested in what I’ve found helpful in my quest to understand autism.  These are my Top 10…  (starting with my Top 5 – because 10 is too much for one read…)

  1. Thinking in Pictures – and other Reports from my Life with Autism – by Temple Grandin – an absolute must-read.  She describes what it’s like to be in her head, and the ways that she’s figured out how to function and interact in a world she often does not understand.  In fact, anything written by Temple is amazing – this just happens to be my favourite.
  2. The Way I See It – A Personal Look at Autism & Asperger’s – by Temple Grandin – ditto on the above – fabulous read.
  3. Emergence Labeled Autistic – by Temple Grandin and Margaret M. Scariano – you really just need to read all of these books by Dr. Grandin.  In fact, I’m going to re-read some of these.  It’s been a while since I waded through them.
  4. Making Peace with Autism – by Susan Senator – Susan is a writer/poet/advocate who writes eloquently and sometimes heartbreakingly about being a mother to an autistic child.  It took me some time to get through this one, because she brought raw emotion to the fore – I would start sobbing and would have to put it down for awhile.  But she also communicates that it’s going to be okay.  I leant this book to a friend, who like me, has an autistic son.  She could not get through it.  She said she was “not ready to forgive it.”  I totally got what she meant…  but I also wanted some peace.  Susan’s blog is fabulous, especially if you are American – she has great insight into services that are offered in her system.  Find her at http://susansenator.com/blog/.
  5. Songs of the Gorilla Nation – My Journey Through Autism – by Dawn Prince-Hughes, Ph.D. – The best way to describe this is to quote Dawn herself:  “This is a book about autism.  Specifically, it is about my autism, which is both like and unlike other people’s autism.  But just as much, it is a story about how I emerged from the darkness of it into the beauty of it.”  Enough said…

And that’s the point, I think.  There is beauty and advantage to being an autistic person.  I’m not saying it’s not scary, or frustrating, or confusing.  You just have to find those particular gifts and celebrate them.  It has been a distinct pleasure and joy to watch Henry’s attributes and strengths grow.