Category Archives: Uncategorized

The Canadian Autism Partnership: a website to remember.

In my book, Unforgiving, Memoir of an Asperger Teen, I note that Autism wasn’t really a concern until the late 1980’s.  How wonderful it would have been if my parents and teachers (and I!) could have taken a survey like this one.

I received this survey request from the Autism Society of BC.  The Canadian Autism Partnership Project (CAPP) would like all Canadian persons with or dealing with Autism Spectrum in their family, social or professional life to take the CAP survey.

The purpose of the survey is to assist in identifying programs and services that are currently effective and those that are lacking.  Sounds like a good idea, does it not?

The proposed vision of the Canadian Autism Partnership is:

All Canadians living with autism have the opportunity to lead fulfilling and rewarding lives. This means that they are able to access the necessary supports and services in a welcoming and understanding society. 

The proposed mandate of the Canadian Autism Partnership is:

To mobilize partners across sectors on a national level to accelerate innovation and action to address complex issues affecting Canadians living with Autism.

The proposed foundational statement for the Canadian Autism Partnership is:

Canadians living with autism have the right to:

  • ·        inclusion,

  • ·        understanding and acceptance,

  • ·        respect and dignity,

  • ·        full citizenship,

  • ·        equitable opportunities and access,

  • ·        personal autonomy, and

  • ·        decision-making.

The national ASD working group has identified the following areas of focus for the Canadian Autism Partnership:

  • ·        Early detection and diagnosis

  • ·        Treatment and support across the lifespan

  • ·        Education, training and awareness

  • ·        Attachment to the labour force

  • ·        Community living (includes recreation, leisure and housing)

  • ·        Impact on caregivers (includes health, mental health, respite, and senior issues)

  • ·        Research

To take the survey go to:  www.capproject.ca

To view their website, go to: http://www.capproject.ca/index.php/en/

I know I can count on you!

Yours truly,

Margaret Jean.

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An Aspie’s Easter: Ritual

Some of you may be somewhat familiar with my paternal Grandmother from reading Unforgiving, Memoir of an Asperger Teen.  Well, every Easter up until I was eleven years old, my grandmother bought me a complete outfit.  I can only remember one of these: a light aqua terylene dress, with white collar, white gloves and white shoes.

Do you have a favorite memory of Easter?  Or maybe there’s new traditions you’re starting now. I’d be interested in hearing some of them.

Easter Sunday was special in those days.  Women wore their very best outfits, including a new hat.  I loved to go to church and see the pretty Spring colours.  The black and navy of winter was gone, and the women brought out the sunnier summer palette.

For me, Easter Sunday still means dressing up.  I love laying out my clothes the night before, choosing the accessories that I’ll wear to accent the outfit I’ve chosen.

More and more I’ve become aware that it is a privilege to attend the church of our choice, and a privilege to worship. We still have that privilege; I like to enjoy it while I can.

After church there was always a big family dinner, sometimes with friends joining in.  Roast ham or chicken, the last of the root vegetables from the cold cellar, home made breads, and for dessert, home made apple pie (there was no other kind in the ancient days) and ice cream. A feast of celebration.!  Who would say no to that?

As an Aspie?  These rituals are precious events, imbued with memories of days past, traditions I never want to relinquish.

 

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Teen Aspie Activities That (Mostly) Don’t Involve Computers.

Is your child a science buff?  If so you likely don’t have a problem prying them away from computer games. Eighteen year old UBC student Ann Stasia Makosnski (not an Aspie to my knowledge) invented a flashlight that works off body heat and a coffee cup that uses the heat of the drink to charge our cell phone. If your child has ‘invention ideas’ encourage them.

Even if the first 500 ideas are flops, they are bound to succeed sooner or later.  Thomas Edison failed 10,000 times (I’ve successfully found 10,000 ways the light bulb will not work) and still became one of the most famous inventors of the 20th century.

Aspies like different ideas.  Here’s one: carry socks wherever you go.  Winter is very hard on homeless people. They often find themselves in below zero temperatures without socks, sometimes even without shoes.  Recently a spokesman for the Union Gospel Mission reccomended giving a nice warm pair of socks to a homeless person.  This suggests that you see them as a person, and empathize with their predicament.

Carrying new warm sox to give to homeless people could be a great way to change a trip to the grocery store or mall into a giving experience for your child.

Does your child frequently post on You Tube?  Alex Plank, an Aspie, developed a website, “Wrong Planet”  for teens with Asperger’s when he was just a teen.

This led Plank to pursue a career in film. He graduated from George Mason University with a degree in Film and Video Studies.  One of his current projects is Autism Talk TV which can be found at:http://wrongplanet.net/autism-talk-tv/.  Plank is currently a consultant for the TV series, The Bridge.

Does your child enjoy talking with older people?

Looking through our local community newspaper, I see that BC Care Providers Association is encouraging anyone who knows someone in a care facility to visit them.  This seems a reasonable activity for Asperger Teens, as they often communicate and get along better with adults than their peers.

Does your child have a special interest?

Let’s say his special interest lies in trains; it might be a good idea to introduce them to an association of people with similar interests, such as a railway model association.

Introduce the child to the association’s activities at a show or exhibition.  Research and explain how meetings are held, and attend with the child at first to help ease him into introductions and conversations.  If it’s a good fit, the child will then have social interaction with people who enjoy his special interest topic.

There are lots of ideas on creative ways to engage your child.  Not all of them involve the computer.

If you have ideas, I’d like to hear them.  Just email me at margaretjean64@gmail.com.

Yours truly,

Margaret Jean.

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2015 in review

The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 960 times in 2015. If it were a cable car, it would take about 16 trips to carry that many people.

Click here to see the complete report.

Asperger’s Poetry!

Cameron

I think I’ll kill myself, he says, and start over.

He looks at me with world-weary eyes.
I despise the people who have made him feel so wrong.

He watches with interest as friends throng around his younger brother.
They hang out.  have fun.  He’s not sure just how that’s done.

Cameron doesn’t do his work, his teacher tells his mom.
He does the minimum, and when we ask for more, he refuses.
The fact is, in the classroom?  Your son does as he chooses.

His teachers want to increase his medication.
His Mom just wants him to get an education.

Did the teachers speak to Mrs. Einstein?
Madam, your son spends too much time gazing at outer space.
And when it comes to Mathematics, his work is a disgrace!

Or Leonardo’s Mom?
Mrs. da Vinci?  You’re Leo’s mom, right?  Well, he doodles all day.  Can’t keep his mind
On his work.  Draws ‘flying’ machines.  And (ahem) did you know he sketches nude men?

Or the mother of Microsoft:
Mrs. Gates, you’ll have to get a tutor to help Billy with his writing.
He’s fighting it. Says he’s going to build some computer: He will speak
and it will type.  You must get his mind off this tripe, Mrs. G.  Bring him
back to earth or he’ll never be worth anything.

I wonder what Mrs. G. might have had to say, how she and the other mothers
might have responded.  Cameron’s mom feels inadequate.  Anxious for her son.
Sometimes despondent.

He can’t pretend.  And anyway, it’s no use now.
Everyone knows he’s different somehow.
His mother tries to ease his pain.  His father’s gone.
Last week he promised to come round.  And didn’t.
Again.

Cameron has Asperger’s or PDD.  It’s a condition he lives with.
But Cameron has voiced what he perceives to be another choice:
I think I’ll kill myself, he said, and start this thing all over again.

He looks at me with world-weary eyes and I despise
the people who have made him feel this way
Because Cameron is my grandson and he’s
eight years old today.

M. J. Adam.

 

Ten Benefits of Volunteer Service From An Aspie’s Point of View.

Volunteer Services are a great way to prepare for work in the real world.  Volunteering can be a sort of head start program for Aspies.  Here’s why:

1. It gets you out of the house and interacting with people in a positive way that benefits you and your community.

2. It’s a non-threatening way of finding out what kind of work you like, what kind of hours you can handle, and how long you can stand to be part of a work place interaction.

3. If you don’t like it, you can quit.  You will still give notice so that someone can cover your shifts, but if you find the co-workers snarky, or the clientele is too much for you to handle, well, no harm done.

4. You will learn to schedule your responsibilities.  You have to make a commitment.  You have to show up when you say you will.  You have to be good at what you say you are good at.  You have to know that you can get there  (public transit, walking or bicycling) on your own.

5. You will learn to be reliable and punctual.  You will get good references if you do,.

6. You will learn to work with other people of varying ages, professions and education levels.  You will become part of a team.  You will learn how to interact with them in a non-abrasive way.

7. You will learn to understand heirarchy–how people rank in an organization, and how they fit together.

8. You will learn to follow orders–to listen carefully, to ask questions if you don’t understand or are not sure of what is being asked of you, and to find out what special tools or equipment is to be used in the carrying out of these orders.

9.  You will develop different skills, to varying degrees of competence.  These skills do count on a resume.

10.  You will experience limited rejection–most organizations are more than happy to greet new volunteers.

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Calling All Aspies! ASD Research Project; BC Lower Mainland

That is an interesting video!  Jim Tanaka from the University of Victoria explains how he got into Autism studies and how they led to the development of facial recognition games for kids on the spectrum.

By the way, Aspies, are you looking for something to do? Would you like to participate in some current university research?  If you live in B.C.s lower mainland, you’re in luck!

Subjects aka participants are being recruited for a joint SFU/UBC study into the difference in visual perception between those with and those without ASD.

The researchers are looking for adults, that is, people 18 and over, with an ASD diagnosis.  They would also like the parent or caregiver to attend.

For more info on this study go to:  http://autismlab.psyc.sfu.ca/event

Yours truly,

Margaret Jean.

Getting There In My Own Aspergerish Way

Margaret Jean and her niece, Baritta Cotton.

Margaret Jean and her niece, Baritta Cotton.

4:19 a.m.   I finally have a desk and chair in my den.  No lights, but this is an improvement.  For more than two weeks, my computer sat on a coffee table while I operated it from my perch on a needlepoint footstool.

More than a week passed before I found the right kitchen table.  Delivery and assembly was another wait.  I learned that one week of three meals a day in bed does not make one feel spoiled.  Especially annoying?  Toast crumbs.  For someone who cannot stand the irritation of tags in her clothes, toast crumbs in bed were the equivalent of having my sheets strewn with gravel.

We lived two years in a furnished house and rather than pay storage for two years, we got rid of everything except my bookcases and our bed.  Now the refurbishing begins.

Craig’s list is helpful.  If nothing else, it gives me a good idea of what people are getting rid of and what value it has on the open market.  I’ve also figured out that most of the items listed under ‘free stuff’?  Really just need someone to take them to the dump.

There are still boxes in every room that need emptying.  But I have nothing to empty them into–no cupboard or closet or shelves.  So I am still shopping.  We also have no sofa, just one chaise.  This creates a sense of incompletion, of uncertainty that makes me anxious.  But it’s getting better.  Disorganization is unbearable, but I’m slowly pulling everything together.

Now, if I could only sleep through the night!

Conundrum

27 Tuesday Aug 2013:  A Guest Blog

Posted by  at http://annkilter.com/

When we began going to autism workshops and conferences, we found ourselves the subject of many sales pitches for the newest therapies that would produce miracles.

We also were sometimes pressured by parents in the local Autism Society to make a commitment to purchase a certain therapist’s services in order to “bring her to our community.” Enough parents had to participate in order to pay for her services to make it worth her while to come. Auditory integration training would cost $2,000 for a set number of therapy sessions. Music therapy was $100 an hour.

There were two problems with this.

First, we could not afford it. We were just scraping by as it was. Several options were presented – beg the money from our relatives, put it on a credit card, get a bank loan or a second mortgage on the house.

Second, which one of our children would we choose? Choosing them all was out of the question.Should we choose our gifted, disruptive autistic son or our quiet, multiply learning disabled autistic oldest daughter? Or our youngest, questionably autistic daughter? An impossible choice.

Therefore, we said no. As result, we were ostracized for not “participating for the good of all the children in the area.”

Instead, we chose to invent our own therapies out of ordinary life.

We listened to classical music in the house for our music therapy.

We were blessed by a piano teacher who was willing to try to teach my son. He enjoyed music, singing in tune with gusto. After a year, she noted that he had an aptitude for music. She taught him for 12 years. After that year, we ask her to teach our oldest daughter in order to improve her finger strength and coordination. I thought it might help her learn to hold a pencil. My youngest daughter wanted to do what her brother and sister did. This cost $10 a week per child – a pay as you go therapy.

We chose to take advantage of community subsidized speech and occupational therapy offered by Easter Seals and the Rehabilitation Hospital. These required small payments times three.

In spite of extended and persevering effort, learning to ride a bike did not happen. Instead, we found equestrian therapy – offered at a discount due to the generous donations of the community – also paying as we went. Our children were unable to ride a bike due to balance issues, but they were able to eventually learn to ride a horse independently.

These choices stretched us financially, sometimes heavily, but we made the sacrifices on a weekly, monthly basis.

Choices of “miracle therapies” with little proof of efficacy would have bankrupted us.

From Ann Kilter: Conundrum–Therapies That Worked For Us.

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What Is Asperger’s Anyway?

This weekend so many people asked me, What is Asperger’s?  How can I tell if my son has it?

My book, “Unforgiving, Memoir of an Asperger Teen” took a 1st place Journey award, and prompted a lot of questions about the syndrome.

People with Asperger’s find it difficult to read body language, voice intonation, and facial expression. This creates difficulty communicating and interacting with other people.

Asperger’s doesn’t always affect individuals to the same degree, or in exactly the same manner, which is why it is said to be on the “autism spectrum”.  That is, it is a highly functional and variable condition that alters how we relate to others, understand our community, and express ourselves.

Sometimes we feel hopelessly lost in a conversation.  We cannot always determine what is sincere and what is merely light-hearted social bantering.  Sometimes this is so isolating that we withdraw.  We do not understand what is being said or in what context and therefore we pretend to be disinterested.

This makes us very bad at small talk, which is society’s established method of feeling each other out before going into deeper conversations.  Small talk is a protective device that helps people locate each other in their social setting and their community, whether it’s school or work or something recreational.

People with Asperger’s tend to want to talk at a deeper level.  They have trouble understanding this is not appropriate much of the time.

We may not be able to tell when to join or start a conversation, or when the conversation is over.  We may talk over the other person and generally interrupt at lot.  A great website to look at for assistance is the UK’s National Autistic Society website at: http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/what-is-asperger-syndrome.aspx.

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