Tag Archives: Asperger Sydrome and Difficult Moments

Got a problem? Get a gizmo

Today’s post is from Ryan’s Dad…

Ryan achieved an important milestone last week: he rode his bike without training wheels for the first time.

On the road again, this time without training wheels

For our family, it was a huge accomplishment. Ryan, now 8, had long resisted the idea of riding without extra wheels. He was anxious about crashing. “I’ll be killed,” he’d yell.

Getting Ryan to ride with training wheels had been a struggle in itself. At first, he would travel only short distances, complaining loudly about how hard it was. He’d hit the brakes as he approached even the slightest downhill grade. He wouldn’t ride uphill at all.

He was worried about getting hurt, anxious about learning a new skill.

But we kept at it. We made frequent trips to the path around the nearby duck pond. In time, he complained less and rode farther. At one point, he surprised us by pedalling around the pond on his own.

It’s not unusual for kids on the spectrum to shun bike riding, mainly because of a lack of co-ordination, poor balance and anxiety. On one discussion board I found, some parents argued that trying to teach their Aspie kids how to cycle just wasn’t worth the heartache. They said it was a mistake to think that cycling was a necessary rite of passage. They said it was better to focus on more important skills rather than cause familial strife over a recreational sideshow.

More importantly, they stressed that it was wrong to push kids to do something they simply did’t want to do.

Fair enough, I thought. You have to pick your battles. I was prepared to give up on teaching Ryan how to ride if it only made us all miserable.

However, it was clear that Ryan enjoyed the sensation of riding once his anxiety had subsided. So we kept at it.

Still, I figured that teaching Ryan how to ride on two wheels was going to be challenging. He needed extra security and stability. Crashing wasn’t an option.

Like most guys, I figured I needed a gizmo. So I turned to the Internet. That’s where I found the E-Z Bar.

It’s a long, metal pole with two handles and a wobble-joint at the other end. It attaches to the bike’s seat post, which allows the trainer to maintain control of the bike, virtually eliminating crashes. More importantly, you don’t have to stoop over the bike, and the rider gains confidence without really seeing the trainer.

At the beginning of the summer, we practised riding in a straight line. Then we focused on stopping and starting. Finally, we tried turning in circles and figure-eights.

There were many times when Ryan grew frustrated with his slow progress. He’d often get off the bike and sit in the grass, his arms folded, his mood foul.

I would simply wait while offering gentle encouragement. I knew that getting angry wouldn’t help.

And I remembered the words of the parents who advised against pushing too hard.

But Ryan was motivated to learn, even though he made it clear he found it hard.

After a few minutes of pouting, he would inevitably rise to his feet and get back on the bike.

I knew his determination made it likely he would succeed.

As well, Ryan has a good sense of balance and his gross motor skills are, well, getting there. It was really only his anxiety and lack of confidence that were getting in the way.

After about a dozen practice sessions — some of them lasting up to an hour — the anxiety was gone, his confidence bloomed. He was ready.

During our final session, I was exhausted. He was often travelling at top speed down a small hit in a nearby church parking lot. I could barely keep up.

I told him I had to take a break to catch my breath. I sat down and wiped the sweat off my brow. I told him we would return to the next day with his mother because I wanted her to witness the progress he had made.

But instead of waiting for me to re-attach the bar for the ride home, he simply pedalled away — on two wheels — travelling about 10 metres.

“Did you see that, Daddy?” he asked, a big smile on his face, the sun glinting off his red helmet.

“I did,” I said. “That was awesome.”

Then he rode off as if he hadn’t used training wheels in years. He hooted and hollered, and he sang. He was elated.

The next day, my wife Anne-Marie was ready with the video camera as Ryan climbed aboard his red, BMX bike, suitably called “No Rules.”

We hadn’t told her about Ryan’s accomplishment the day before.

I pretended to attach the bar to his bike, but Ryan knew what to do. He rode off, smiling and singing.

Anne-Marie gasped and immediately started to cry — all of her raw emotion captured on the video soundtrack as Ryan merrily rides through the frame.

Afterwards he asked me: “Are you proud of me, Daddy?”

That’s when the tears started the well up in my eyes.

“Tears of joy, Daddy?” he asked, still smiling.

You bet.

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Filed under Managing Anxiety, Sports and extracurricular activities

Asperger’s and expectations: a summer of surprises

I’ve learned a lot about expectations this summer. We’ve spent most of our time travelling to visit family or holidaying with close friends. Every second week we’ve been off to a new destination – one trip involved a five-hour flight and seven-hour drive that took us right across the country, another included living with a dog the size of a small horse.

We did a social story about Buddy the dog and then we just crossed our fingers!

Given Ryan’s fear of dogs and his love of routine, I expected some serious bumps along our holiday highway. I was cursing myself for failing to see the big picture as I booked these various trips at different times of the year.

 But Ryan surprised us at every step of the way. The five-hour flight was breeze (Thank you Teletoon!), the seven-hour drive included only one major meltdown and détente was declared with the dog on day one.

As we watched Ryan adapt to new surroundings and new people every week, I was reminded of some wisdom shared with us during our quest for a diagnosis: a health care professional urged us to beware one of the pitfalls of diagnosis: lowering our expectations. I understood what he meant: we would ask less of Ryan, go ‘easier’ on him because he had a specific challenge.

Of course we have made allowances such as:

  • Using visual aids rather than relying on verbal instruction
  • Helping him choose appropriate extracurricular activities
  • Acting as bridge in building friendships
  • Being more understanding about his social faux pas
  • Respecting his sensitivity to smells/sounds

But our psychologist was equally clear with us early on: don’t let Ryan disappear down his rabbit hole of special interests or stay in his small comfort zone. Keep him engaged in our daily lives. Expect him to join in, to be a part of things. And for the most part it’s worked.

Our parents’ group recently had the honour of meeting a high school student with ASD who candidly shared his experiences of growing up with Asperger’s. He shared so many valuable insights:

  • How swimming provided him with an outlet for his anger/energy
  • How his Asperger’s led him to argue endlessly with his parents because his way just seemed better or smarter
  • How theatre became a passion for him and helped him learn how to interact more successfully with others

 But the biggest lesson I learned from this remarkable young man had to do with expectations. His parents had high expectations for him. They expected him to succeed. They pushed him to do his best. And even though he found it challenging, in retrospect he appreciated it.

His words underscored a key part of bringing up any child, but particularly a child with additional challenges: we need to help them push their limits – to stretch themselves – so they can feel the exhilaration of unexpected success.

An unforgettable day: swimming back from the raft

If you’d asked me in June if Ryan would a) go ‘tubing’ attached to  power boat b) jump off a six-foot dock or c) swim out to a raft in the middle of a lake, I would have answered ‘none of the above.’ But there you go, it’s been a summer full of surprises.

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Filed under Diagnosis, Family, Managing Anxiety, Social stories, Sports and extracurricular activities

Atlantic Conference on Learning Disabilities: May 12 – 13



We can all benefit from a better understanding of learning disabilities.  Parents, teachers, psychologists, social workers and others who want to do more to help support youth living with learning disabilities are encouraged to attend the Atlantic Conference on Learning Disabilities, being held May 12-13, 2011 at Mount Saint Vincent University.

This conference will bring together more than 25 experts from the Atlantic region in the fields of psychology, education, justice and social work. Presenters will offer practical advice on how to support the learning, emotional and behavioural needs of youth with learning disabilities.

Here’s a sample of the workshops:

Navigating the School System: The Art of Advocacy for Parents of Children with Special Needs

Identifying LDs in the Classroom – And What to do About It

Supporting Social Skills Development

Making Connections: Successful Transitions to Post-Secondary Education for Students with Disabilities

Thriving, not Just Surviving: How Parents Can Help Children With LDs Achieve Future Success

From Goggledygook to G-Force: Teaching Science to Students with LDs.

Managing Executive Function Deficits: Helping Students Organize, Prioritize and Succeed

Recognizing Mental Health Issues in Youth

Keeping Students Connected: How Teachers Can Help Students Feel Good About School…And Why It Matters

Parenting 911: Managing Learning Disabilities at Home

How Learning Disabilities Affect Behaviour

Opening the conference will be well-known and well-loved author Sheree Fitch. “I’m thrilled to be a part of this conference, as a writer, a learner and a parent,” says Fitch. “We’re all on a huge learning curve. As educators, we need to be educated. As parents, we need to be informed. And as learners, we need to be supported.”  Sheree will also offer workshops during each day of the conference.  Registration for, “Tell Me About It!  Breathe, Stretch, Say and Write!” is limited to 20 participants per day.

Special guest, actor Danny Glover will make a keynote speech on Friday, May 13. He will discuss his experiences living with a learning disability, his views on education and his work as a social advocate in conversation with his friend and fellow actor Felix Justice.

Justice Merlin Nunn will also share his thoughts on the importance of supporting youth at risk in the community. Justice Nunn served as the Commissioner under the Nova Scotia Public Inquiries Act to the Nunn Commission of Inquiry, which investigated the death of teacher’s aide Theresa McEvoy.

Registration for the conference is now open.  Participants now have the option of registering for either one or two days of the conference. 

 

   For more information, please contact:

Rhonda Brown, Director of Communications – w (902) 465-4800 or cel (902) 483-7800

 

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Navigating the minefield of extracurricular activities

I know we looked completely crazy to the parents sitting near us in the skating rink today. After all, how many parents laugh, hug and practically cry as they watch their child glide down the ice? But we knew how hard won this icy flight was for Ryan and we couldn’t help ourselves. It was a big deal and we knew it.

Finding activities that work – and knowing when to push your child and when to throw in the towel – is such an intricate dance with any child. Add Asperger’s Syndrome to the mix and it becomes a bit more complicated.

Ryan started skating lessons before his diagnosis and his initial reaction to lessons was one of the things that hinted that he may be on the spectrum. He hatde his uncertainty on the ice – and his fears scared the bejesus out of all the other little kids in the dressing room. Oh the cold hard stares we got those Saturday mornings.

Once we coaxed him onto the ice (talking about how he was Anakin Skywalker travelling across Hoth) he would lie down more than stand up and use his skate to repetitively take chunks out of the ice . We all felt horrible and at a loss. But we peservered, made some small gains, and then abandoned skating for a year.

Now we’re so much more prepared to meet Ryan’s needs. We know one-on-one instruction is definitely a must in his case. We also know that skating, bike riding and other activities are naturally going to take longer for Ryan because of the coordination/gross motor issues that often accompany AS.

And we prepare his instructors in advance. I recently met with the aquatics supervisor at the pool where he receives one-on-one instruction. My goal was to share a quick handout I created about Aspergers. He was surprisingly positive and open to the piece, so I’m reprinting it here, in case someone else finds it helpful.

Three Things You Need to Know about Asperger’s Syndrome

1. It’s neurological. That means Ryan’s brain is wired differently than ours and he experiences the world differently. The rules that most of us follow quite naturally don’t really make sense to him.

Listening. This is Ryan’s biggest challenge. The pool is a very overwhelming place for him. His brain is like a blackboard filled with sticky notes and they all look the same, so things that we block out (background noise, the shimmering water, the lights) all demand his attention at the same time.

  • What works: – Visual instructions. Showing rather than telling. Ryan’s very smart, but processing verbal instructions is difficult. Show him the list of what he needs to do to get his badge and check off the things he accomplishes.
  • What doesn’t: Don’t expect that saying Ryan’s name or calling to him will get his attention. I often touch his shoulder to ensure he connects with what I’m saying.

 2. Asperger’s makes the world a confusing place. Things that most of us learn, know and remember (like I’m safe in the water when my teacher is here or I can’t run on the pool deck) aren’t as easily accessed by kids with Asperger’s – that means we need to give them lots of reminders.

Staying on task. All Asperger’s kids resist change because it scares them. Ryan resists change, so learning new things can take a lot of time and patience.

  • What works: Make things a game. Ryan loves role playing The offer of doing something ‘fun’ after he tries a new thing works well too.
  • What doesn’t: Talking too much. Short instructions. Gentle encouragement. The promise of something fun after something hard, is much better than long negotiation.

 3. Ryan’s brain is an eccentric, but exciting place. He’s command of language and concepts is very advanced for his age. Don’t be surprised if he wants to talk forever about a computer game or if he uses very big words.

  • What works. I use Ryan’s love of language and information to keep him on task. Give him a word he doesn’t know or explain how something works and he’ll be listening with laser-like focus.
  • What doesn’t: If he would rather talk about computer games than do what you’re asking, use what he’s talking about to your advantage (i.e. It’s time for the Super Mario brothers to swim up to me…)

I have this in Word format. If you want a copy just let me know and I can send it your way.

I would love to know what sports/activities your kids like and why? And how do you prepare them and others?

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Autism conference coming up in Halifax

A friend in our Asperger’s parents network recently mentioned an Autism Conference for parents and professionals that’s taking place in Halifax on April 15 and 16th.

The conference is one of several taking place across the country, organized by the Autism Awareness Centre Inc. I had never heard of the group but one of the parents mentioned it at our last meeting and I’ve now signed up for their eNewsletter.

I personally don’t know much about the event speakers, Dr. Jed Baker and Dr. Lori Ernsperger but the workshop titles and descriptions definitely caught my interest.

Let me know if you’re aware of their work and if you’re planning to attend!

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Asperger’s 101

We belong to a relatively new network of parents, all of whom have kids with Asperger’s or similar challenges, and I was just recently saying how the playground can feel like the 7th ring of hell as I watch our beloved boy doing some very confusing (read: Aspergian things).

The parents talked about the balance between obligation I feel to be educating others about Asperger’s and Ryan’s right to privacy. At this stage, I’m erring on the side of education, because from what I’ve heard from other parents, eventually kids can clam up about their diagnosis as fitting in becomes more and more important to them.

There are lots of great resources out there to explain Asperger’s to family and friends. The OASIS website is a treasure trove of info from a basic “What is Asperger’s fact sheet” to a letter for grandparents (that is a little too long, but filled with good info).

When we first researched Asperger’s what we read didn’t sound like Ryan at all. It was all too vague or too clinical. Here’s what we’ve learned about Asperger’s so far (and we welcome corrections, additions and general comments!):

1. It’s about the brain, not about behaviour. As we tell Ryan ‘Your brain is wired differently. It makes some things easier (like reading) and some things harder (like managing ‘big’ feelings). AS kids see the world through a different lens and we have to constantly remind ourselves of that.

2. Not every Aspergian is obsessed with cars or trains. Yes, kids with AS tend to have special interests, but Ryan’s interests actually change regularly, with the exception of reading, which is constant. What is distinctive about AS kids is that their special interests tend to be all encompassing, so they will often lecture others about their passions with little regard for the reciprocal nature of conversations. Their voices may also sound wooden or flat.

3. Little professor syndrome: “Daddy, do you hold me in lower esteem than my brother?” Ryan’s highly advanced use of language is extremely entertaining (and occasionally embarassing) and is somewhat typical of AS kids.

4. Completely misses the hidden curriculum.  This is where things start to get difficult for the kid with AS . While they might be able to read and even respond to questions, they often ‘don’t get’ the unwritten rules that are part of everyday functioning in our ‘neurotypical’ world:

  • reading facial expressions (they look bored by all my talk about spies…)
  • unspoken rules (you don’t tell the teacher ‘you shouldn’t yell at him’)
  • appropriate and inappropriate language (you can talk about poo with your friends but not the principal)

In short, AS kids really ‘don’t get it’ because their brains function completely differently than ours. I’ve heard of a number of AS young people and adults who take acting classes to ‘learn’ how to respond to particular situations.

5. Difficulty understanding the emotions of others.  AS kids often have a neurological roadblock that keeps them from understanding or predicting the behaviour of others. They sometimes can’t see the connection between their actions and how they impact others and they can have difficulty seperating fact from fiction (Ryan lost something at school this week and immediately assumed someone stole it from him, even though he had lost it.)

6. Accessing information from one situation and applying it to another. Most kids learn something a few times and then can access that experience and apply it to different situations. An AS mind is a busy and confusing place, so although kids may be able to recite the correct response to a difficult situation, they can’t necessarily access that knowledge when they need it.

7. Visual trumps verbal. Although Ryan’s verbal skills were very advanced at a young age, his ability to process verbal requests is quite limited. Written instruction works best because of his highly visual mind. I really liked the way the HBO movie about Temple Grandin illustrated this phenomenon. This is a real challenge for me as a parent, since I’m a big talker and all that does is add noise and confusion to any situation.

8. Sound, smell and sight sensitivities. Someone once described an Aspergian brain as a blackboard covered with hundreds of similar yellow sticky notes. They all look the same and are overwhelming because no one note stands out. That’s the sensory overload experienced by some AS kids – the white noise at the pool can be overwhelming, or a seemingly mild smell like cucumber, even the hum of the fluorescent lights at school can be difficult.

9. Social interaction can be hard. Impaired socialization is a hallmark of Autism Spectrum Disorders, so although an AS kid may want to interact (and many do!) they don’t know how to enter a conversation or ask to join a group of kids.

10. “…Some argue that persons with AS are under constant or near-constant stress.” This was one of the hardest sentences I ever read about AS. The world can be an extremely confusing and unpredictable place for Aspies. One online resource is called Wrong Planet and I think that just about says it all.

The last thing I should say is that the Autism Spectrum is incredibly broad, so some of the issues above won’t affect all kids with AS. Each kid is different. That was one of the challenges with diagnosing Ryan originally – he didn’t fit the mold in some ways, but he did in others.  

What would you tell others about Asperger’s? What resources have you used to explain it to friends and family members?

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