Archives for July 2013

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Politics And Autism: Deciding Who To Trust

July 31, 2013 By

Today I discovered that I have my very own YouTube channel, and by coincidence, I had a cause to use it. There is a provincial by-election coming up in the electoral region that I live in, and there is really only one issue that I will be basing my vote on. Although the federal government has some loosy-goosy policy on funding for special needs kids, this is largely the domain of the provincial government. This evening, my husband went to a meet-and-greet hosted by the major candidates in this by-election. He asked all of them to state their stance on autism funding for the camera, and the results were quite surprising…

Scarborough-Guildwood By-Election

This is an original post by Kirsten Doyle. The video is original, unedited footage shot by Gerard Doyle and Kirsten Doyle.

Filed Under: autism, Autism Services, Election, Politics, Video Post Tagged With: , , ,
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Saving The Mattresses

July 29, 2013 By
The playground under construction

The playground under construction

One of the things that I have found most surprising about autism parenting is the amount of money we have spent on mattresses. My son is very much a sensory-seeking kid, and he needs the deep joint pressure that comes from jumping and running. He has turned jumping into an art form, and we have discovered that it is possible for a child to break a mattress by jumping on it.

We slowed down the carnage somewhat by investing in a small trampoline to put in our living room. We also decided to do something about the playgroundless state of our back yard. Fortunately I have a husband who knows how to build stuff, and easy access to places like Rona. We put together a playground design and purchased the materials, and we started building.

Over the course of a summer, the playground started to take shape. We built a couple of platforms for the kids to climb onto, and we attached a couple of slides to it. With the basics in place, the kids now had something to play on. Both of them were in heaven. They had a way to expend their natural energy, and my older son was able to satisfy his deep pressure needs without breaking the furniture.

Since we built the structure, it has gradually evolved. We added a climbing wall, and later, a tube slide. Last summer, the kids figured out exactly where to position their pool so that they could use their slide as a water slide. We attached a pirate ship playhouse, complete with a ship’s steering wheel and a telescope.

The kids have found their own uses for the playground as well. One day, I went outside to look for them in the rain, and found them sheltered under a little tent on one of the platforms. They were having a grand old time in there, my older son with his Lego and my younger son with a colouring book.

This playground, which started as something we were going to build to give my son an alternative to jumping on beds, has turned into one of those perpetual projects that will never end. It is fun to see what more we can do with it, especially now that the boys are old enough to have some input.

I look forward to seeing what the next addition will be.

This is an original post by Kirsten Doyle, published in accordance with my disclosure policy. Photo credit to the author.

 

Filed Under: autism, Playground, Proprioceptive Input, Sensory Issues Tagged With: , , , , , , ,
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The Challenges Of Autism Family Vacations

July 23, 2013 By

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It’s a word that brings smiles of anticipation to most families, but strikes fear into the hearts of autism parents everywhere.

Vacation.

For your average garden-variety family, a vacation is a chance to get away from the stresses of work and school, to travel to a scenic place, and to do things that are exciting and different. For your average autism family, a vacation is a chance to get away from the comforting familiarity of work and school, to travel to an unfamiliar place full of strangers, and to try desperately to do the same things you do at home, while cramming your entire family into a single hotel room.

For autism families, vacations are not vacations. Vacations are stressful ordeals that leave parents more worn out than if they had simply stayed at home.

But still, we do it. We put ourselves and our kids through the angst of disrupted routines, unknown places and new experiences, because we feel that it is good for our kids. We recognize that we will never be able to enjoy a vacation away if we don’t at least try. And for some of us, it gets easier. Maybe our kids gradually get used to the idea of going away, or maybe us parents get better at figuring out ways to make it work.

The key to what I very loosely call my own “success” is in the planning. Am I packing enough shirts with horizontal stripes? Do I have an extra hat just in case my son loses the one he has? Do we have the right Lego pieces and Mr. Potato Head parts? Spare batteries for the Leap Pad? The pillow and comforter? The DVDs and something to play them on? Am I catering to the needs of my typical son as well as my son with autism?

Then there’s the logistics of the trip itself. We plan what to bring in the car for the drive. We call the hotel to arrange special check-in arrangements so my son doesn’t have to spend too much time in a loud, brightly lit lobby in an unfamiliar place. We call a gazillion restaurants to get a sense of whether they are suitable environments for a child with autism who is already overwhelmed.

By the time we actually get there, we’re all exhausted and cranky, and not really in a vacation kind of mindset.

My dream is to have a family vacation that actually feels like a vacation, and I am starting to think in terms of all-inclusive vacation deals like the ones offered by Club Med. It wouldn’t take all the vacation stress away, but it would at least mean that some of the planning was taken care of.

And if that means that we can truly enjoy a vacation together as a family, and come home feeling refreshed and relaxed, I’ll take it.

This is an original post by Kirsten Doyle, published in accordance with my disclosure policy. Photo credit to the author.

Filed Under: autism, family, Planning, Vacation Tagged With: , , , , , ,
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Autism: Looking Ahead To The Teenage Years

July 14, 2013 By

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A few short weeks from now, my older son George will be turning 10. This is a pretty big milestone for any parent. Not only will it launch George into double digits, it will mean that I have navigated the mysterious world of parenting for a full decade. Not just any old parenting, either – special needs parenting.

In his ten years, George has accomplished some amazing things in the face of his autism. I could go on all day about progress and milestones and potential, and I really am proud of his determination. Whether or not he is aware of his disability is debatable, but either way, he works really hard for every single victory. The smallest accomplishments that would go unnoticed in most families are a giant cause for celebration in ours.

The harsh reality, though, is that George still has some challenges, the most obvious of which is his lack of speech. He can talk – he has the physical ability and the vocabulary – but he doesn’t. His speech is mostly limited to requests, although he does occasionally make mind-blowing (to me) statements, like last week when he showed me his “screaming green angry gorilla”, which was actually a Hulk toy.

We cannot have conversations with George. We cannot say, “So, what did you do at school today?” and expect him to answer. His standard answer to most questions that are posed to him is “yes”, even when that doesn’t fit the question. Of great concern to me, if something bad was happening to him, like bullying or molestation, he wouldn’t  be able to tell me about it.

That’s just the speech side of it. Social communication is an issue big enough for its own blog post. And as much as George has made phenomenal cognitive gains, in many areas he still functions well below the level of typical kids his age.

And so, with his 10th birthday approaching, my husband and I are preparing ourselves for the fact that he may not be as high-functioning a teenager as we have been hoping. When we got his report card a couple of weeks ago – the one that says he is “transferred” to Grade 5, unlike other kids who are “promoted” – I had a moment of pure terror at the realization that 8 years from now, he will be nominally eligible to graduate high school. It wasn’t the normal “Oh, how fast time passes” kind of terror. It was fear for George’s future.

Until now, my husband and I have been swirling these thoughts around in our heads, but today we spoke about them for the first time. We talked about preparations that need to be made and programs that need to be sought out. We talked about what the reality of life is likely to be when George reaches teenagerdom, just three years from now. He will not have a peer support system like most kids, and he will always be quite obviously “different”. He will go through the angst of adolescence without the ability to express himself verbally, and if we don’t keep a close watch on him, he might be the target of bullying. Other teens – or, Lord help us, some adults – might take advantage of his natural sweetness and trusting nature.

Talking about it makes it so much more real and so much scarier. It brings tears close to the surface and makes me feel very emotional. It makes me wonder if I, as George’s mother, have been doing enough for him. Is there something I have overlooked, some possibility that I have not explored, some avenue of opportunity that I have allowed to pass by?

Of course, I could be wrong. We could see George’s speech and social communication skills explode one day. I am not giving up, and I am not losing hope. I am simply being realistic so I can equip myself to provide the kind of support George will need as he navigates his way from here to adulthood.

Today, when I was out for a walk with my family, I kept looking over at George with an aching heart. He is my beautiful boy, with the most tender of souls, and I just want for him to be OK.

(This is an original post by Kirsten Doyle. Photo credit to the author.)

Filed Under: Adolescence, autism, Childhood, Future, Teenage Years Tagged With: , , , , , ,
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I Feed My Kids McDonalds, And 9 Other Confessions

July 9, 2013 By

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During the first two days of my firstborn child’s life, as I lay in hospital with nurses bringing me food and taking the baby to the nursery so I could get some sleep, I had daydreams about how the whole parenting thing would go. I would breastfeed for a full year, and as the baby grew older, I would raise him on a diet of nutritious foods. I would interact with him, play with him, talk to him – he would not need to watch TV. I had visions of lovingly picking him up whenever he cried, never letting him sit for long in a wet diaper, reading to him every day right from the time we brought him home…

I mean, good parenting was just common sense. How hard could it possibly be to be a model mom?

It turns out, very.

What I failed to recognize in those early weeks was that there was no way I could completely give myself over to parenting. There were going to be times when I would have to do other stuff, like laundry, vacuuming and personal hygiene. And let’s face it, isn’t parenting supposed to be at least partly about the fun stuff, like letting your kid smear chocolate cake all over his or her face?

So here are some “confessions” – and I put that word in quotes because it implies wrongdoing that I do not believe I am guilty of.

1. I feed my kids McDonalds. Not every day, obviously, but from time to time I let them eat junk food.

2. I often let my kids watch TV because it’s convenient for me. They’re good at self-regulating their TV time so I really don’t care about that “Don’t let the TV be your babysitter” thing.

3. I yell at my kids. It’s not like I’m constantly screaming, but when they drive me insane I just cannot do the Zen-type of parenting that other moms seem to be capable of.

4. I sometimes reward my kids with material things. I’m not too concerned about whether this is teaching them to value the wrong things.

5. If my kids don’t eat the meals that are put in front of them, I don’t give them an alternative meal. If they go to bed hungry, so be it.

6. I don’t play with my kids every time they ask. If I did, I would never get to sit down for a cup of coffee, write a blog post or take a shower.

7. I don’t always lead by example. I’m completely fine with my kids learning that they have to follow certain rules that do not apply to adults.

8. It’s not a frequent occurrence, but sometimes my husband and I have arguments in front of the kids. It doesn’t bother me: on the contrary, they are learning that every healthy relationship includes conflict and the resolution thereof.

9. I love my kids unconditionally, but there are times when I don’t like them very much. Frankly, they sometimes act like little jerks.

10. I sometimes lock myself in the bathroom to avoid having to share chocolate.

Do these things make me a bad mom? Or do they simply make me human? Do you have any confessions of your own to share?

(Photo credit: Kirsten Doyle)

Filed Under: Children, life, parenting Tagged With: , , , , , , , , , , , ,
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If He Didn’t Have Autism…

July 4, 2013 By

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The boy plops down beside me on the couch and puts his hand on top of my head. He is preoccupied with my hair, to the extent that my lengthy locks have to spend most of the time living in a scrunched-up knot. Today, however, my hair is down, and the boy is making the most of the opportunities this provides.

As he runs his fingers through my hair, sometimes twirling, sometimes tugging a little, a thought runs unbidden through my mind.

If he didn’t have autism, who would he be? What would he like to do? Who would he play with? What summer activities would he ask to be signed up for?

Almost instantly, the thought is gone. I realize that it doesn’t matter. He is who he is. He is himself. He likes to play on his computer, assemble endless Mr. Potato Heads, and read his Biff and Chip books. He loves his family and enjoys playing with his little brother until the party gets rough. When he needs downtime, he’ll take a blanket and pillow outside and lie down on the back lawn. He likes junk food as much as the next kid, and he can go through endless quantities of milk. He’s not big on watching TV, but he loves going to the water park. He plots world domination with his brother and doesn’t always listen to me.

In other words, he is a kid with likes and dislikes, odd little quirks, and attachments to the people he loves. Just like anyone else.

Autism is a part of who he is, but it does not define him. If he didn’t have autism, he would be himself, just the way he is now. Maybe he would be a more social, verbal version of himself. Maybe he would play with other kids and be in a sports team. Or maybe he wouldn’t. It doesn’t matter. Asking myself what he would be like if he didn’t have autism is as pointless as asking what his brother would be like if he did have autism.

As he sits on the couch playing with my hair, I look over at him. He has a dreamy look in his eyes and a winning smile on his face.

He is himself. He is happy.

He is mine.

(Photo credit: Kirsten Doyle. This is an original post by Kirsten Doyle.)

Filed Under: autism, Children, life, Personality Tagged With: , , , , , ,
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8 Ways $1000 Can Help Kids With Autism

July 3, 2013 By

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This year, I will be running for autism for the fifth time as I take part in the Scotiabank Toronto Waterfront Half-Marathon. Although the race is advertised as “flat, fast and festive”, it is quite hard, and not only because it’s kind of far. It’s because there are long straight stretches with no left or right turns. In the last 5km or so, I keep imagining that the final turn to the finish line is right there, like a mirage in the desert.

This year, I expect the race to be even harder, because it will come just a month after I do the Ottawa Army Run, which is also a half-marathon.

The Scotiabank run is an important one, though, and I will never exclude it from my race calendar no matter what else I have going on. This race is my opportunity to give something to the autism community, to make the world a better and brighter place for my son and other people like him.

I am running for the Geneva Centre for Autism, and like last year, I have set myself a fundraising goal of $1000. If I achieve that goal, the Geneva Centre will be able to choose from some really cool uses of the money. Like these:

1. Art supplies for 40 individuals with autism. We could collectively unleash the talent of the next Stephen Wiltshire.

2. Sports equipment for 20 individuals with autism. Sporting activity has so many benefits for people with autism, apart from the obvious ones that apply to all of us. Athletics can help develop fine and gross motor skills, it can nurture problem-solving skills, and it give kids the “deep pressure” sensations that they often crave.

3. Instruments for 15 musicians with autism. I have had the pleasure of listening to the music of Michael Moon. Music enriches his own soul and those of his audiences. If he hadn’t had access to a guitar when he was younger, that potential within him might never have been unlocked.

4. Job training for 15 young adults. The biggest worry in the minds of most autism parents is whether their kids will be OK as adults. Will they have the life skills they need to live independently and have jobs? The job training programs provided by the Geneva Centre can make a real difference to the lives of young adults.

5. Field trips for 10 individuals with autism. For most kids, field trips are an opportunity to go somewhere fun and miss a few hours of school. For kids with autism, field trips are an opportunity to learn life skills in real-world settings, and to generalize existing skills to places other than the classroom.

6. Summer camp for 4 individuals with autism. People with autism are often unable to participate in activities that are designed for the neurotypical world. There is, however, an opportunity for them to attend camps for special needs people, or to attend the regular camps with extra support.

7. 2 iPads loaded with autism-friendly apps. It has been shown time and time again that kids with autism can benefit greatly from using iPads. They can learn life skills, social skills, academics like reading and math that can be hard to master in a classroom setting. There have been reports of kids with autism who have gone from non-verbal to fully conversational with the help of iPad apps.

8. One piece of state-of-the-art sensory equipment. A lot of kids with autism are sensory-seekers. They like deep pressure, textures, movement, sounds and patterns. One piece of equipment that meets sensory needs can go a long way in centres that accommodate groups of children.

Every cent that I can raise will make a lasting difference to the life of someone with autism. Whether we help kids discover a talent or a passion, prepare them for life, or simply make it easier for them to tolerate their environment, we have the power to change the world.

It takes a village to raise a child. It takes a village of extraordinary people to raise a child with autism. If you are able to, please be a part of my village.

To sponsor my 2013 Run for Autism, please visit my fundraising page.

(Photo credit: Kirsten Doyle. This is an original post by Kirsten Doyle.)

Filed Under: autism, Autism Services, fundraising, Geneva Centre for Autism, Running for Autism, Scotiabank Toronto Waterfront Races Tagged With: , , , , , , , , , ,