Tag Archives: managing change

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

Growing up with Asperger’s: A Sibling’s Perspective

 As parents we wonder what the impact of Asperger’s Syndrome will on the siblings of our Aspie children. Are we giving them enough of our attention? Are we asking too much? Do their needs take a back seat to the more urgent (or vocal) needs of their sib?

I had an opportunity to ask these questions when I was virtually introduced to Elizabeth Granby, an exceptional young woman who is pursuing a career in developmental disabilities as a result of her deep love for her brother, who was diagnosed with Asperger’s when he was a teenager.

Elizabeth Granby on her brother: "I don’t think there’s anybody in the world who can make me laugh like he can."

Elizabeth recently completed an internship at Holland Bloorview Kids Rehab inToronto and sat down to speak on the phone with me one evening after work.

 Tell me a bit about yourself.

I started off studying media studies and worked in the field for a few years, but it wasn’t where my heart was. 

My brother’s experience made me want to learn more. I feel like Autism Spectrum Disorders are a bit overlooked because they don’t necessarily fit into development disabilities and therefore they don’t really get the support that they need – or the right kind of support.

I’m really passionate about my work now and I want to eventually focus on how to expand services available for people with AS. 

Tell me a bit about your brother and your relationship with him?

 He is 22-years-old and even though he is my half-brother, and there is 10 years between us, we couldn’t be closer. He’s one of my best friends.

He lives on his own now in an apartment that’s close to my parents and he has a support worker who checks in with him once a week.

Right now he’s working on trying to find a job. That’s been a challenge and he tried using different agencies to help. With one agency, his co-workers knew it was a so-called ‘special job’ and they teased him. Now his support worker is focusing on his gifts – like music and wrestling – to try to find a more suitable job. It’s really important to him that he finds real work.

 How would you describe growing up with a sibling with Asperger’s?

It was always interesting. There was never a dull moment. My brother and I are really close and always have been.

It took a long time for the doctors to find his real diagnosis. When he was really young said it was ADHD, then they changed it to Tourette’s Syndrome, but my mom never felt that was quite right. He 14 or 15 when they finally said Asperger’s Syndrome. We started reading more about it then and said ‘Yes, this is exactly what it is.’ It was a relief to finally have a name for it.

I’ve always been a nurturer and that’s what I did with him. When he was young, he got anxious very easily and things could really set him off and start him pacing. I would instinctively grab him in a hug and hold him until I could physically feel him calm down.

What did you learn from the experience?

It really taught me to be flexible. It made me learn early on to be adaptable and go with the flow.

As I teenager I think I felt it more because I required more of my parent’s attention. I got good grades and didn’t cause too many problems. At that time being so flexible became a bit of a challenge.

I spent some time with my grandparents off an on, getting one-on-one support from them and that helped. They always talk about respite support for the family, but it’s sometimes siblings who need it too.

What was the most difficult about the situation?

Sometimes having a brother with AS can make our relationship a little one-sided. We talk on the phone every day. I spend lots of listening to him and supporting him, but I don’t always get the typical support back and that can be a challenge.

As I’ve gotten older I’ve realized he does support me and love me. But he shows it in different ways that other brothers and sisters might. Sometimes I have to look for it.

He knows this is something he needs to work on. When he calls me on the phone now he knows he can’t just launch into his stuff…he asks me how I am. We’ve been working on that for a year. He’s really trying to work on the one-sidedness.

What was the best part?

The laughter. I don’t think there’s anybody in the world who can make me laugh like he can. We both enjoy the same things like live music or funny movie. Just having a good time.

How is your brother doing now?

After he left high school it was hard. He went to community college but nothing seemed to be sticking for him. He would stay up half the night playing video games. He wanted to move on to the next phase of his life but had no idea how to go about that.

When he started looking at his special interests things started to change. He loves wrestling and he started taking lessons and making friends there. On New Year’s Eve my Mom and I were on the phone crying because for the first time he was out with his friends.

What advice would you have for parents who are struggling to parent two different kids in as consistent and fair a way as possible?

Communication is really important. You’ve got to open up those channels and keep talking with them. My parents actually got some great insights into my brother from me because siblings know their sibs in a different way. 

We also had a ‘no lie’ rule after my parents tried to protect me from some difficult information about my brother. I felt really excluded and we all realized that covering things up only made them worse.

 It was also okay to have different rules for different kids in our house – we tried not to keep score! We appreciated being treated like individuals.

My parents would also do special things just with me from time to time to give me a little one-on-one attention. They knew us well enough to see the signs and know what we needed.

Are there any resources you would recommend?

The Complete Guide to Asperger’s Syndrome by Tony Attwood because he actually talks to people with AS and provide good insight into how to work through conversations with people with Aspergers: tips about redirecting and how not to escalate situations.

 I also like watching Temple Grandin’s talks and presentations online.

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Filed under Celebrating Difference, Diagnosis, Family

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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Filed under Education, Sports and extracurricular activities

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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Filed under ASD events, Managing Anxiety

Social stories: Saying goodbye

Here’s another example of a social story.  Last year Ryan went through a big change at school, so I tried to prepare him for the changes and let him know that while some things would be changing, others would be exactly the same.

Saying goodbye

When I was in Grade Primary, Mrs. Wallace was my Learning Centre teacher. She was lots of fun.

Then I said good-bye to Mrs. Wallace and Ms. Choyce came to the Learning Centre. She was great too and we had lots of fun together, like during the Olympics when we put up flags from countries and cities all over the world.

I learned a lot from Ms. Choyce. We did different activities every week and I learned about breathing and being a good friend. I even did yoga, which I’m going to do with my Mom and little brother over the summer.

Next year when I come back to school, I will have another new Learning Centre teacher. Her name is Mrs. Paul. Ms. Choyce is going to a new school closer to her house.

Sometimes, when I think of something changing, or someone leaving, I feel sad. But it’s like when Mommy goes away on business trips, it feels upsetting at first, but once it happens I realize I’m okay.

Saying good-bye to Ms. Choyce may feel sad, but if I miss her, I can look at this picture and remember the fun we had together. I can even send Ms. Choyce a note on email if I need to talk to her. I can also hug the teddy, since he is staying in the Learning Centre to keep me company next year.

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Filed under Building social skills, Managing Anxiety, Social stories