Category Archives: Books & articles

Some simple tips for Back to School

I just saw this list of helpful tips for parents and teachers of kids with Asperger’s Syndrome shared on Facebook.

It’s excerpted from The Asperger’s Answer Book: The Top 300 Questions Parents Ask by Susan Ashley, Ph.D. Copyright 2007 by Susan Ashley.

I thought it might be helpful to all those parents whose kids are heading back to school this week. I’m just about to email it to our teachers…

Hope you enjoy it and would love to hear any thoughts you have to share. Best of luck this week!

 

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The Kindness of Strangers: Part One

I think what makes the kindness of strangers so powerful is the fact that it’s unexpected. We’re not looking for people we don’t know to go that extra mile for us, the way we hope family and close friends always will. And that’s why those small acts of kindness have the power to sweep us off our feet.

Take for instance, the incredible story forwarded to me this week by a friend at Carleton University. Confronting Asperger’s in the classroom is a lovely gem, wonderfully written, that tells the tale of several Carleton students who have Asperger’s Syndrome and how they, with their professor’s help, are navigating the maze of university life.

I was struck by two things right away: first I was moved by how a bit of extra effort on the professor’s part yielded such incredible dividends on the part of the student. The time he took to understand his student and adapt his style meant the difference between someone just ‘getting by’ or reaching their full potential. I was also struck by the reciprocal nature of his gift – how his kindness enriched him and opened his eyes to Asperger’s students and their particular needs and abilities.

I can imagine when dealing with students how difficult it must be to build relationships and how much easier it is to focus on things like ‘outcomes’ and ‘compliance’ and ‘socially acceptable behaviour.’ 

Now I See the Moon, by Elaine Hall

I’m reading a book right now called Now I See the Moon. It chronicles the journey of Elaine Hall, an L.A. acting coach for kids who adopts a young boy from Russia and soon finds out he is autistic. Her story is full of wonderful insight, starting with the book’s title, which finds its origins in a Japanese haiku:

 Barn’s burnt down –

now

I can see the moon.

That poem just makes me giddy with unexpected delight – how something you assume is awful is actually a hidden gift. Hall devoted years of her own working life to her son’s education and I was struck by her focus on meeting her son ‘where he lived,’ rather than trying to pull him into our neurotypical world. The people working with her son weren’t focused on changing his behaviours at first, they were focused on understanding those behaviours, matching them, and then using the resulting connection to build a relationship with her son. Once that relationship was established trust was able to grow and new doors opened.

When I read the article about the prof at Carleton University I felt the same way. He took the time to listen and learn, and the doors opened wide – not only for him, but for his students too.

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NY Times: What happens when our ASD kids grow up?

Soon after Ryan was diagnosed Mike and I watched the film Adam, a Hollywood tale about a young man with Asperger’s trying to find a life for himself after his father dies.

This was the first time we were confronted with the question of what Ryan’s life might look like after we were gone. Would he be able to take care of himself? Who would watch out for him? I’m all too aware of the many allowances made for Ryan right now because he’s a young boy – sweet, eccentric, fun – and still maturing. But what happens when he gets older?

These are among the questions posted in a great New York Times feature called “Autistic and Seeking a Place in an Adult World.” I haven’t had a chance to read the entire thing yet, but I’m intrigued by the comment early on about austism being the ‘next civil rights movement.’ I also bemoan the lack of services for young autistic adults here in Nova Scotia – and particularly good job placement services.

I’d love to hear your thoughts on the article – and what programs, services or practices are helping you prepare your kids for adulthood.

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Being apart can equal staying together…

Getting away can be good for the soul

Here is a great interview that appeared in my favourite blog – BLOOM – all about respite care and the importance of taking breaks from our daily lives, including our wonderful families, to rest and revitalize. I was fascinated by the 10-day retreat mentioned in the interview. It’s a great read. Hope you enjoy it as much as I did.

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Introducing your new neighbours to Asperger’s: a letter for families

The families in our Asperger’s Parents’ network have often wondered ‘What do the neighbours think?” when our kids are in the middle of a meltdown, emitting ear-piercing screams or shouting for help.

One family just moved into a new home and decided to be pro-active. Their idea? A letter addressed to their new neighbours, introducing them and their daughter and explaining a little bit about Asperger’s.

"Everybody that I met when delivering the letter where very appreciative of the gesture."

“I distributed my letter to my neighbours,” writes Sonia, “And invited all the kids for cake for Marsye’s birthday…it was awesome! The response was overwhelming! Everybody that I met when delivering the letter was very appreciative of the gesture. A few of them with no kids came also! What a great day it was!”

Sonia passed the letter on so we could share it with our Circle of Friends. Her daughter Maryse also helped deliver the last few letters herself. “We worked on what she had to say and all,” says Sonia. “It was good for her.”

Sonia and Steve’s letter is attached below. In Sonia’s words: “I hope it will give the courage to other families to embrace the beauty of our AS kids and celebrate it!”

I loved the wonderful tone of this letter. Thanks so much to Steve and Sonia for sharing it.

My name is Sonia and I want to introduce my family to you!

As you all know we have just moved in Monday and we are very proud to tell you that we LOVE our new house!

In a nutshell: I grew up in Caraquet N.-B. and Steve, my husband, is fromYarmouth. We’ve both been very implicated in the French community for the last 16 years!

My two beautiful kids are Maxime, soon to be 12 years old and our very bubbly daughter Maryse who just turned 10 Tuesday. Maryse is in grade 4 and Maxime is moving up in grade seven. (Yes…time flies by!!)

 A little note about our daughter Maryse…for the longest time we knew that our very imaginative daughter was different from other kids: in the way she communicated, her attention to details, her intense interests in certain movie characters…we finaly found out 18 months ago that she has Aspergers Syndrome (AS). What a relief for us to finally know that the thing that made our daughter special had a name!

A few examples that you will notice: If you go by and say “Hi!”, she might not reply because she didn’t “get” that it was intended for her, because she’s in her bubble. Or since we live so close, you will probably hear one of her fits! Usually it’s because she gets “stuck” in what she’s doing and doesn’t want to stop it in order to do something else (like bathing, getting ready,…) and our patience gets tested!

Both Maxime and Maryse love their Wii! The “game of the day” these days is Mario Galaxy 2,BlueOcean(Maryse)! Although Maryse’s interests change once in a while, she knows all Sponge Bob’s adventures and her AS makes her quote various episodes that usually confuses the person who is talking to her since it is usually said out of context. We are showing her how to prepare the context when she wants to talk about her characters.

Maxime plays soccer and Maryse dances Hip Hop and jazz with a dance school stationed at the school. We love the beach and to travel! Steve and Maxime are cat people and Maryse and me are dog people!!

We look forward to meeting you as we settle in our new neighbourhood!

Please note that we will have cake for your children to celebrate Maryse’s birthday Saturday! We look forward to introduce our family to yours!

Sincerely,

Sonia and Steve

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A tour of the Aspergian mind with John Elder Robison

I had the honour of hearing Naomi Tutu speak at a conference I attended recently inVancouver. Her message was powerful on several fronts: first, she called on each of us to be a ‘voice of courage’ in the face of injustice.  She also urged us to celebrate – not hide – our differences.

I was thinking of her words as I finished reading John Elder Robison’s latest book, Be Different: Adventures of a Free-Range Aspergian¸ on the plane on the way home.

Robison’s memoir, Look Me in the Eye, was one of the first books I read about Asperger’s after Ryan’s diagnosis, so I had high expectations for his second effort. I wasn’t disappointed.

LikeTemple Grandin, Robison has mined his own experience to help fellow Aspies, parents, and teachers better understand life on the Autism Spectrum. Today Robison is a successful author and businessman whose passion for electronics has helped him build a fulfilling life for himself and his family.

His approach won me over at first glance – here is a man who is celebrating the gifts that come with Asperger’s and sharing ideas for leveraging those gifts.  “Asperger’s was a disability – that’s what the books said. I’m still not sure I believe that,” he writes early on.

He then goes on to catalogue his first-hand experience of the brain differences that come with ASD and their benefits: his incredibly visual mind, his ability to remain calm and unemotional in taxing situations, his intense focus, concentration, and ability to learn quickly in areas of interest, his use of logic to solve social problems and his attention to detail.

But make no mistake, the knowledge Robison shares with us is hard-won. Before his Asperger’s diagnosis in his 40s, he spent at least some of his youth knowing he was very different from his peers (but not the reason why) and wondering if he was going to grow up to be a serial killer. “Learning I was a perfectly normal Aspergian male (and not a freak) was a revelation that changed my life,” he says.

Robison gives us a great guided tour of the Aspergian mind, reminding me of the wiring differences that explain some challenging Aspie behaviours:

  • Not responding when called: hyper-focus on internal thoughts, special interests, or sensory sensitivities
  • Negativity/pessimism: smaller range of emotions in a short time period, difficulty with perspective, planning for the worst to reduce anxiety, getting stuck on thoughts
  • Inappropriate responses to difficult situations: hyper-focus on internal thoughts, inability to read others

He wraps up his book with a theme that I’ve read about before – Aspergians identifying and using their special interests to find meaningful work after school. But Robison adds two other, equally important elements, to the equation – focus and hard work and resolve. And as a parent, that’s the challenge that lies ahead.

I hope Robison keeps on writing and I’ve got my fingers crossed that he will one day visitHalifaxfor a lecture or book tour. Maybe I’ll invite him myself. I’m sure we could fill a hall at SMU or Dal with parents and kids who would be eager to hear his story and his ideas firsthand.

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Check out this interview with author John Elder Robison

I cannot wait to read John Elder Robison’s next book, Be Different, which promises to be a fascinating window on the inner life of Aspergians. Check out this web interview for a great overview of what he covers in his book.

Elder says: “Over the past three years, people have asked me countless questions about my thought processes.  This book interprets those thoughts while at the same time benefiting from the improved power of reflection that the process itself has given me.”

I’ll write a review before too long. Or if you read it before me, please let me know what you think.

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The Asperger’s Advantage

There’s a really lovely article on the St. John’s Telegram website right now about a young man who has ‘The Asperger’s Advantage.’ I loved the title of the article so much I wanted to post a link to it on our blog. It’s written by Krysta Colbourne of the Grand Falls-Windsor Advertiser and you can find it here.

I’ve been reading Temple Grandin’s Thinking in Pictures this week and this article is a perfect example a common theme in her writing: people on the spectrum using their special interests to develop a career. This theme is shared by other authors like John Elder Robison – whose new book Be Different is going to be on my bedside table soon.

They all possess  what I’m now going to call The Asperger’s Advantage – interests that they nurture and develop long after us neurotypicals have moved on to the next thing. A great life lesson about what we can learn from one another’s strengths.

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Social stories: Back to school

I use Social Stories all the time to help Ryan get ready for special events, cope with change or focus on a particular behaviour. Since he’s so visual and loves language they are the perfect way to get his attention and avoid my tendency to ‘over talk’ (although I’m pretty good at ‘over writing’ too!).

Carol Gray, the woman who gave us all the gift of social stories, describes them as a story that:

  • describes a situation, skill, or concept in terms of relevant social cues, perspectives, and common responses
  • shares accurate social information in a patient and reassuring manner that is easily understood by its audience.

Real social stories follow a specific format, which I have to admit I don’t always use, but you can get all the details on Carol Gray’s website.

Two tips worth remembering:

  • Gray says half of all Social Stories should affirm something that an individual does well
  • I’ve also read that developing with the child’s participation is important and worthwhile

Writing from the heart

At this stage, I work with Ryan about responses he can choose to various situations, but the stories focused on transitions or change I often write myself. It’s all trial and error.  Sometimes he corrects words he doesn’t like, or ideas or options that don’t appeal to him. It’s worked incredibly well for us.

My few tips:

  • Keep the social stories short
  • Try to use language and/or jargon that your child enjoys/understands
  • Leverage the impact of favourite characters or stories to make your stories more interesting or accessible
  • Pictures make everything more fun!

Here’s one example below. I can’t publish the pix since they are all licensed.

Social story: Calvin Goes Back to School

Calvin and Hobbs had a great summer together. They went camping. They swam and played on the beach. They went to Artech camp.

Now it’s time for Calvin and Hobbs to start school. Calvin is going into Grade Two. Mrs. White is his new teacher. She is very kind and wants to help Calvin have a good year.

Ms. Prine is Calvin’s new Learning Centre Teacher. She will make sure Calvin learns new things this year too and she will organize his computer and break times.

Some things at school have changed, like Calvin’s teachers, but lots of things have stayed the same:

–         Calvin’s friends will be back at school. Dan, William and Isaac are all in Calvin’s class.

 –         Calvin will still have computer time, sometimes Miniclip and sometimes other games.

–         The rules of the classroom are still the same – respect yourself and others, do your best work, ask for help when you need it.

It’s going to be a great year for Calvin and Hobbs!

Where do you find great social stories? I’ve found some great samples online. Share your favourite links.

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The power of memoir

We are a family of readers. Joyous, zealous, happy readers. One of the early indicators of Ryan’s AS was his ability to read at a shockingly early age. We now know he was reading at a highly advanced level by the time he was three years old and he continues to amaze us with his vocabulary and his ability to decode language.

I never get tired of telling funny stories about his eccentricities and one of my favourites happened when he started preschool. The first week he asked his teacher: “Ms. Pat, what’s a breathing diff?” “Pardon me, Ryan?” “A breathing diff?” he repeated pointing to a first aid sign tacked up on the wall for parents. “Oh, that stands for breathing difficulty!” The teacher looked at me apologetically and said “I’ve never had to worry about anyone reading that before!”

Look Me in the Eye was the first memoir we read about AS

But I digress. Because I’m such an avid reader, I’ve spent a lot of time in and out of books since Ryan’s diagnosis almost two years ago. The behavioural stuff has been good and so have some of the guides, but my favourite to date is memoir.

It is in memoir where I meet potential versions of my son later in life. Iwatch him try to learn to drive. Meet a partner. Break up with said partner. Get and lose jobs. In short, I watch him find his own way in the world.

Of course, I have no idea what Ryan’s life will be like when he gets older, but I take such comfort in listening to and watching these other souls growing up. They whisper: “Don’t worry. It all works out in one way or another.” And that eases my anxiety just a little bit and reminds me we’re all trying to find our way.

The first memoir I read was Look My In the Eye, by John Elder Robison, a skillfully written story by a man who wasn’t diagnosed with Asperger’s until much later in life. His younger brother, Augusten Burroughs, is also an accomplished author.

I found a few sections in this book extremely dark and disturbing – around that teenaged time in life where it seems as though things could ‘work out okay’ or come crashing down around us. But as John grows up, the tale evens out and we learn about how the author’s AS traits land him in a fascinating career and fulfilling life. He has a second book coming out in March 2011 called Be Different that I’m definitely adding to my reading list.

My second memoir excursion was Born on a Blue Day, by Daniel Tammett. Tammett was diagnosed with Asperger’s Syndrome at 25, but is also an autistic savant with miraculous numeric abilities. Tammett’s story is an extraordinary journey: he moves to Lithuania as a young man, he sets a world record for reciting the number Pi to 22,000 decimal places, he learns Icelandic in a week as part of a documentary series. But through it all he shares an intimate look at the non-neurotypical world and it’s riveting.

I’ve read a lot more memoir, but it’s getting late and I’ll save them for other posts at another time.

What are your favourite memoirists and have you seen the HBO Temple Grandin flick? It’s worth it!

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