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Back To School Musings Of An Autism Mom

August 26, 2013 By

George writing words

A week from now, the kids will be going back to school, and I’m not sure whether to jump for joy or quiver with worry.

On the one hand, the kids being back in school will mean more time for me. Being home with them for the summer was a circumstance that I found myself in due to my unexpected unemployment, and it’s been quite a revelation. I have enjoyed it, but I do have new respect for stay-at-home moms – especially those who homeschool their kids. I am looking forward to being able to spend time by myself to focus on my job search efforts.

On the other hand, back-to-school time is always a bit of an ordeal for my older son George. After two months at home, his school routine has gone completely out the window. He has to relearn the whole process of getting up at a certain time, getting onto a school bus and being expected to spend each day in the classroom. For most kids – like my younger son – this represents a resumption of an already known routine. But for kids with autism, it’s like starting a whole new routine all over again.

Autism and new routines go together about as well as tuna and chocolate syrup. In addition to the daytime disruptions, George goes through insomnia while he’s adjusting to the transition. Which means we’re in for about six weeks of not sleeping.

With George going into 5th grade, this is old hat to us. We do whatever preparation we can. We use social stories, drive through the school parking lot from time to time throughout the month of August, and start easing into school-like morning routines during the last two weeks of the holidays. And then, when school resumes, we just brace ourselves and deal with it as best we can.

We go through the transition with the attitude that “this too shall pass”. Because it always does. We won’t necessarily see things get easier from one day to the next, but one morning George will wake up and be completely OK with going to school. He will get dressed and stay in his clothes instead of changing back into his pyjamas at the last minute. He will calmly get onto the bus and fasten his own seatbelt. When he comes home in the afternoon, he will be happy. That night, he will sleep. For the whole night.

Once George gets over the bump of going back to school each year, he does quite well. His brain is like a sponge, and although progress on his speech and social skills is oh-so-slow, it is definitely there.

I am nervous about the start of the school year, but I am excited to see what the year will bring for George.

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

Filed Under: autism, back-to-school, Routines, Transition Tagged With: , , , , , , ,
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Eight Car-Travel Tips For Autism Families

August 15, 2013 By

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I am very fortunate to have a child with autism who is a good traveler. We haven’t braved planes with him yet, but he does very well on public transportation and in the car. Even so, we have to put careful planning into lengthy drives to ensure that he stays safe and happy, and that the rest of the family survives with all their wits intact.

1. Make sure the child locks are engaged. Most neurotypical kids are aware of the dangers of opening the car door while the car is in motion. A kid with autism might tug on the door handle just to see what happens, without regard for the possible consequences. If you don’t know how to set the child locks, read the manual. If you’re in the market for a new car, check it out for safety features with your special needs child in mind.

2. Kids who have trouble with car travel should be eased into it gradually. If your child cannot get as far as the grocery store without melting down, don’t plan a road trip to the other end of the country. Experiment with a few trips of 30 minutes or so. During those trips, try different activities and snacks, until you figure out what works.

3. If you’re going on a long trip, plan your route to include stops at parks or play areas. We all benefit from getting out of the car and moving around from time to time, and it’s good for all kids to expend their energy. For kids with autism, there is an added consideration: those who are sensory-seeking may have a particularly difficult time sitting still in a car, so those activity breaks are often a necessity for them.

4. Some kids with autism cannot tolerate bright light. You might be able to make the trip a lot easier by investing in a shade for the window beside your child. The shades are easily applied with suction cups, and you might be able to leave it to your child to decide whether they are open or closed.

5. When deciding what to bring with you, stick with what you know your child likes. Buying a new toy especially for the trip may backfire. If your child stims by repeatedly stacking eight identical pieces of Lego, bring them along. If he reads the same book over and over, don’t leave that book at home. New stuff might create anxiety and frustration, whereas comfort can be found in the familiar items.

6. If you are planning to hit the road at night with the hope that your child will sleep, follow the usual bedtime routine immediately before you leave. It may still be a little disruptive, but your child will at least be geared for the idea of going to sleep. You may even get away with putting a smaller child to bed and then carrying him to the car once he’s gone to sleep.

7. Be prepared for the possibility of meltdowns. It can happen to the most accomplished of car travelers. If you use reinforcers (in our case, gummy bears), bring along a good supply. Think of your usual strategies for containing or diffusing meltdowns, and consider how you can modify them for use in a moving car (if you can stop, great – but you may not be able to pull over right away).

8. Don’t be 100% focused on the needs of your child with autism. The truth is that no matter how well prepared you are, unexpected things can happen. If you have taken the time to make sure everyone in the car has what they need for an enjoyable trip, the overall ambiance will be a lot more relaxed. That can make the world of difference to the child with autism, and to everybody else who is on the trip.

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

 

Filed Under: autism, Car Trips, Meltdown, parenting, Road Trip Tagged With: , , , , , , , , ,
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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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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: , , , , , , , , , ,
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Confessions Of A Pro-Vaccine Autism Mom

June 13, 2013 By

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Today I took George to the doctor to get his shots. I was very nervous about this prospect: George used to have a terrible fear of doctors, and would always sit in the waiting room literally quivering with anxiety until it was his turn. Fortunately he’s a healthy child and hasn’t needed the services of a doctor for a couple of years, so I curious to see what his reaction would be like today.

When we walked into the waiting room, he sat down and calmly started playing with a toy. He didn’t flinch at the sights and smells typical of a doctor’s waiting room. We didn’t wait for long before we were called into the doctor’s inner sanctum. There, too, George was remarkably laid back as the doctor looked him over.

His composure fell apart somewhat when it was time for the needles, but as soon as they were done and the Band-Aids applied, all he needed was a couple of minutes of hugging, and then he was fine.

Ah, yes. The needles.

As an autism parent who keeps her kids vaccines up to date, I sometimes feel like a minority voice. Or perhaps it’s just that the anti-vaccine people tend to be more vocal than those on my side of the fence. But this is not intended to be a post about who’s right and who’s wrong. Everyone has their own journey, and their own reasons for the choices they make.

My position – speaking only for myself – is that vaccines cannot be blamed for the autism epidemic. You can show me a thousand statistics proving that I’m wrong, and I can show you a thousand statistics proving that I’m right. I do not dispute that some people have bad experiences with vaccines. But I do not believe that anyone has made a convincing enough case to generalize those incidents to the population as a whole.

I know with absolute certainty that George came out of the womb with autism. When I look back over his babyhood, I remember many thoughts of doubt going through my mind.

He should be swatting at toys by now, but he stares right through them.

Shouldn’t he be interested in the texture of these fabric books?

At what age are babies supposed to sit? Crawl? Walk?

Why is he ignoring me when I call his name?

I knew early on that something was going on. Vaccines had nothing to do with it.

Still, there are people who are critical of my choice to vaccinate. Deciding to vaccinate my younger son was like walking through a minefield.

“You are vaccinating your younger child, even though your older child has autism? Really?”

From the way some folks talked, you would have thought I was ripping out my child’s fingernails one by one.

My kids’ vaccinations have always gone without incident. There are generally a few tears that are forgotten by the time we are getting back into the car, and there may be an evening of crankiness. Someone might sleep badly. By the following day, everyone is pretty much back to the way they were.

My name is Kirsten, and I willingly vaccinate my child with autism.

(Photo credit:Daniel Paquet.This picture has a creative commons attribution license.)

Filed Under: autism, Doctor, Vaccines, Wordcount Blogathon Tagged With: , , , , ,
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Creating Stories Out Of Life

June 12, 2013 By

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Out of all the concerns I have about my son’s autism, the biggest is his communication impairment. He has the physical ability to talk, and he has a perfectly good vocabulary. He routinely states needs and desires using full sentences, and he even makes the occasional little joke, but the kid does not have conversations.

The reason this is such a big worry for me is that he cannot talk to me about things that happen to him during the day. If I ask him what he did at school today, he cannot tell me. If something was going on that shouldn’t be, such as bullying or inappropriate touching, he wouldn’t be able to express it. It’s not a problem now, while he’s young and under the supervision of trusted adults at all times, but he’s not always going to have that protection.

For a long time, I have been practicing the art of conversation with George. I ask him a series of questions and then reward him for giving appropriate answers. Perhaps more importantly, I expose him to conversations as much as possible so that he can learn by osmosis, the way he’s learned many of the life skills that he has acquired.

So far, I’ve had limited success with this, but I never lose hope that some day he will get it. This is a child who took nine months to learn how to point. The length of time it took was not nearly as significant as the new skill. So I don’t give up, ever.

A very recent development is that George is learning to communicate his experiences in his own way, by turning them into little stories. I first noticed this over the weekend, when we were driving home from a fun afternoon at the water park. George, who almost never utters a full sentence that is not a request, suddenly came out with a bunch of them, one after the other.

“Dad drove to the water park. George got wet. James got wet. The children got wet. Everyone got wet. Oh nooooo!”

While I thought this was absolutely phenomenal, the full significance of it went over my head at first. It was not until an incident yesterday that I realized what this could mean for George’s communication.

George has a fascination with water running out of taps, and he turns taps on as far as they will go, and then just lets them run. Usually we’re able to keep this in check, but occasionally he gets out of sight, the way kids do. He turned on a tap in the upstairs bathroom that just happened to be temporarily disconnected from the plumbing. A pile of water went into the space beneath the floor, which is also the space above the ceiling of the living room downstairs.

We didn’t know that George was turning taps on and off, but when water suddenly started gushing from the living room’s light fixture onto the carpet, we had a clue that something might be wrong.

A flurry of activity followed, like laying towels down on the living room carpet, and drilling holes in the ceiling to allow the water to drain out. While this was going on, George was hovering nearby, simultaneously nervous and excited. There was no doubt that he knew he was responsible for the chaos, and he seemed to be anxious yet oddly proud of his accomplishment.

All of a sudden, he produced another group of sentences.

“George turned on the tap. The carpet got wet. Dad stood on the ladder. Dad got cross.”

That is when it hit me that George was starting to use simple little stories to communicate events from his day, and that this could be the key to conversation that I have been searching for. I feel that I now have something to latch onto, something that I can encourage and expand on.

I am beyond excited about this. I have a feeling that we are on the cusp of some fantastic developments, and I will be listening out for more of George’s little stories.

(Photo credit: Bludgeoner86. This picture has a creative commons attribution license.)

Filed Under: autism, Communication, Stories, Uncategorized, Wordcount Blogathon Tagged With: , , , , ,
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