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Eight Car-Travel Tips For Autism Families

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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.

 

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Part Of The Family

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When my father-in-law died a little more than ten years ago, things were a little overwhelming. I was almost four months pregnant with my older son and my brain was in a fog. On top of that, I found myself meeting most of my husband’s extended family for the first time, en masse, at the funeral.

In most families, this would mean a few cousins, uncles and aunts, and maybe the odd niece or nephew. But while my husband’s immediate family is small (he is one of two boys), there are several aunts and uncles, and dozens of first, second and third cousins, plus their respective husbands and wives, boyfriends and girlfriends. There are so many of them that it took several weddings, funerals and christenings before I could remember all of their names.

At this particular gathering – my father-in-law’s funeral – it was all too much. Don’t get me wrong, my husband’s family are lovely people, as are their families. But in my pregnant, emotional state, it was overwhelming to meet so many new people at an already stressful event, and to try and fit in as the newest member-by-marriage of the family.

This was exacerbated by the fact that we also announced my pregnancy to most of the family that day.

You know how it goes. “Hi, I’m Kirsten. By the way, I’m popping out a baby a few months from now.”

OK, it wasn’t exactly like that, but you get the picture.

At the post-funeral shindig at my mother-in-law’s house, the alcohol flowed freely. This is an Irish family, after all. You can’t give a beloved Irish patriarch a decent send-off without drinking a few toasts in celebration of his life. I so badly wanted to grab a bottle of red and retreat to the nearest corner, but I didn’t think my unborn child would appreciate that. I halfheartedly drank some orange juice and then wandered through the crowds to the dining room, where the food had been laid out. I might not have been able to drink, but I could sure as hell eat. As soon as the morning sickness wore off, there was no end to my appetite.

The food looked lovely. My mother-in-law and her sisters had made some appetizers and heated up lasagna, and there was food that looked as if it had come straight from the catalog for Subway sandwich platters – which wouldn’t have been a bad idea, given the number of people there.

Sadly though, I couldn’t eat it. In spite of the variety, the beautiful presentation, and the fact that the table was virtually collapsing under the weight of all the platters and salad bowls and casserole dishes, there was absolutely nothing there that I wanted to eat. Contrarily, all I wanted was Taco Bell, which was strange because when I was in a non-pregnant state, Taco Bell food had always made me gag.

In spite of the snow, I went outside. There was nothing else for me to do. I couldn’t drink, I couldn’t eat, and I was all peopled out. Standing by myself in the snow was just what I needed.

The crisp cold air must have done something to clear my head, because after a few minutes, I suddenly felt OK. I went back inside, ate some of the food that just minutes before had turned my stomach, and spent time with the family, my family, the village who would become a part of raising my child.

This is an original post by Kirsten Doyle, published in accordance with my disclosure policy.

Photo credit to ellieward90. This picture has a creative commons attribution license.

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What Do You Tell A Child When Another Child Dies?

 

Luke

Luke

Last weekend, I received word that a friend’s seven-year-old son, Luke, was in ICU after a near-drowning incident. I kept near-constant vigil at my computer during my waking hours, anxiously waiting for updates, and when I got the news that Luke had died, I took it very hard. As a human being, as a parent, as the mother of a seven-year-old boy – this tragedy hit very close to home.

As I have tried to make sense of the emotions that have been swilling around in my head all week, I have grappled with the question of what to tell my younger son, James.

The concept of death is not new to James. He got a rude introduction to it in Kindergarten, when his teacher died of pneumonia. The teacher had been very popular among the kids; James had absolutely adored him, and had a hard time understanding that he’d never see him again.

In the three years since then, he has developed a reasonably healthy attitude to the fact that people die. He asks about his grandfathers and how they died, and he talks about angels and souls and stuff like that. He is sad when people close to us die, but he accepts that it is part of the circle of life.

This is different, though. Old people dying is part of the circle of life. Children dying is an idea that just doesn’t fit. The mere thought of it has a jarring effect, as if you’re listening to soft classical music and hear a sudden blast of ear-splitting heavy metal. I wasn’t sure if James was ready to be introduced to this concept, especially since he had never met Luke.

Just as I had decided not to tell him, he came up to me as I was looking at a picture of Luke that his mother had posted on her Facebook wall. He asked me about the little boy in the picture, and I found myself telling him that Luke was now an angel. This led to a discussion that was hard for both of us.

For all his bull-in-a-china-shop approach to life, James is a sensitive child with a natural sense of empathy, and he was genuinely sad as he looked at Luke’s picture. He talked about how he’d never get to play with Luke, and he expressed concern for Luke’s mother.

“She must be so sad,” he said. “Is she going to be OK?”

I told him that yes, Luke’s mother was very sad, and I assured him that she had lots of people around her who would make sure she was OK.

There was a pause, and then he said, “Mommy, if I died, would you be OK?”

I couldn’t answer him. I was too busy trying to hold my rapidly dissolving composure. I just held him as close to me as I possibly could.

A few minutes later, his little voice piped up again.

“Mommy, I’m scared. Kids can die, and there are so many ways to die.”

This was a tough one. How was I going to strike the balance between realism and reassurance? I couldn’t say, “Don’t worry, it won’t happen to you or your brother”, especially since this whole discussion had arisen from an unexpected tragedy. And I couldn’t say, “Yes, accidents can happen at any time”, because that would freak the poor child out and make him afraid of leaving the house.

And so I decided to focus on probabilities. If we only cross the street when the pedestrian light is green, there’s far less chance of being hit by a car. If we don’t answer the door to strangers, they won’t kidnap us. If we eat the right foods and run around in the back yard every day, we will get sick less often and we’ll get better faster.

In other words, staying safe and healthy does not guarantee that something won’t happen, but it does vastly improve our chances. It’s good to be cautious and mindful of potential danger, but we have to live our lives.

As I spoke to James, his fears seemed to ease. Since then, he has returned to the topic a few times, and as hard as it is, I am glad that the original discussion opened a door for him to talk about a subject that is important.

Later on that day, James came up to me and said, “Mommy, I’m still sad for Luke’s mommy, but I’m not so worried about her anymore.”

“Why is that?” I asked.

“Because Luke is still alive in her heart, and he can hug her from the inside.”

This is an original post by Kirsten Doyle. The picture of Luke is reproduced with the kind permission of Janice Zimmerman.

 

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10 Awesome Things About The 2013 Durham Quarter Marathon

 

Crossing the start line - there I am, wearing number 7!

Crossing the start line – there I am to the left, in the pink shirt and white hat!

1. There was free undercover parking just a block away from the start line. It was refreshing, not having to walk half the distance of the race just to get from my car to the start.

2. The race kit included some nice goodies, including a water bottle (runners can never have too many of those) and a super-cool race shirt that actually fits properly.

3. The cause is just too worthy for words. This race benefits The Refuge, which helps homeless youth. Runners were given a practical way to help: the race kit was packaged in a sturdy cardboard box, which could later be filled with donations like food and diapers, and returned to The Refuge.

4. This race was a fairly small event – about 600 participants. This gave it a strong community feel, and it meant short Porta-Potty lineups.

5. The course is fantastic. The unusual distance (10.549km) appeals to my quirky nature, and most of it is run on park trails. The course doesn’t lend itself to crowd support, but it is scenic and has plenty of natural shade.

6. The finish line is at a lower elevation than the start line, meaning that most of the run is downhill. It’s not as easy as it sounds, though, because most of the downhill bits are in the first half. There are a couple of monster hills in the second half. Last year I was able to power up the first of these hills, but faded going up the second one. This year, I paced myself more sensibly in the beginning of the race, and I was able to tackle both hills head-on.

7. This year the finish line was moved to the parking lot. Runners veered off the lakeside trail and ran in a loop around the parking lot to the finish. The layout lent itself to great crowd support at the finish, and the show-off in me appreciated this. The extra cheers spurred on a great finishing kick.

8. There was a lot going on in the finish line area – enough to keep tired runners fed, hydrated, massaged and entertained – but not so much that it was overwhelming. I didn’t have to fight my way through crowds to get what I needed, and I enjoyed meandering around the various displays while I ate my post-race banana.

9. All of the volunteers on the course, and at the start and finish areas, were so nice. One in particular – the lady who retrieved my bag from the baggage check – engaged me in friendly conversation, and seemed genuinely thrilled that I had had such a good race. That little interaction added a nice personal touch to the event.

10. The shuttle bus was not a school bus, like it is at many other races. I always feel sorry for the kids who have to ride on those things every day. They have to plunk their bums on a seat that’s as comfortable as a two-by-four, and then get bounced around like jelly-beans. At this race, I got to ride back to the start line area in a bus with comfy padded seats.

Thank you to the organizers, volunteers, police officers, spectators and fellow runners for making the Durham Quarter Marathon such a fun event. I will be back next year – this race has earned a permanent place on my annual race calendar.

This is an original post by Kirsten Doyle. Photo credit to the Durham Quarter Marathon.

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Politics And Autism: Deciding Who To Trust

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.

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Saving The Mattresses

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.

 

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The Challenges Of Autism Family Vacations

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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.

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Autism: Looking Ahead To The Teenage Years

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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.)

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I Feed My Kids McDonalds, And 9 Other Confessions

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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)

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If He Didn’t Have Autism…

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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.)