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Running For Autism: One Step At A Time

running for autism

Two days from now, I am running my annual half-marathon for kids with autism. You’d think that after doing ten half-marathons in the last six years, this would be old hat to me. I am familiar with the distance, and since this year is my seventh Scotiabank Toronto Waterfront race, I am familiar with the course. I know exactly where the hills are (not many, thank God, and none of them are exactly mountainous), I know where the halfway point is, and I know which sections of the course are more challenging for me.

The training, the period of Taper Madness and the race itself are supposed to get easier with each passing year, right?

Well…

This year, my family has faced some intense challenges. A series of unfortunate events culminated in my husband having just three weeks’ notice to vacate his business premises. This meant packing up and moving fifteen years’ worth of product, tools and heavy industrial-grade machinery. While this was going on, I landed a big contract for my own fledgling business that I couldn’t turn down. I was helping with the move during the day, working on my contract at night, and grabbing catnaps on the couch from time to time.

This left me no time for running. My half-marathon training called for intense speed work during the month of July. Instead, my training ground to a screeching halt, and I was only really able to get it going again halfway through August. By then, as much as I had tried to keep my work on an even keel, I had fallen so far behind that I was continuing to work late into the night. So although I was running again, I wasn’t running as much as I needed to.

Consequently, I am not as prepared for this race as I should be. I know I can complete the distance, but I do not expect it to be my finest hour. I don’t even have a goal time in mind. All I want to do is cross the finish line, get my finisher’s medal, and come home where I can sit on the couch and eat weird amounts of cheesecake. If I get a decent time – and I’m certainly not ruling that out – that will be a bonus.

My fundraising hasn’t gone as well as I had hoped either, for pretty much the same reasons. Asking people for donations makes me feel more than a little awkward at the best of times, and this year it has been particularly challenging. I haven’t had time or energy, and I have been operating in a fog of exhaustion and stress. I have fallen far short of the fundraising goal that I had set for myself.

But still – I have raised almost $300, and that money is going to make a huge difference to some kids with autism. It will provide art supplies, musical instruments, sports equipment or camp activities. It will give young people with autism opportunities and experience that might otherwise be out of reach for them. And I am more grateful than words can express to the people who have helped me reach that total.

I think, in spite of the circumstances, I have done all right. I feel excited about the upcoming race, and I feel proud to be doing my small part to make a difference to children and youth with autism.

It’s not too late to donate. If you would like to sponsor me, please click here. All funds go to the Geneva Centre for Autism, where they will be used to provide services for children and teens with autism.

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

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New Year Roundup

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Every time the calendar ticks over to a new year, I invite friends and family members to share moments from the year gone by, as well as their hopes for the year to come. 2014 was a year of ups and downs: some had the best year of their lives, others had the worst. Many of us were on a roller coaster with good bits and not-so-good bits.

My friend Kandita, who I met when I roomed with her at a blogging conference a couple of years ago (that was an insane weekend) started 2014 with one last name and ended it with another. She looked absolutely beautiful and radiant as she married the love of her life.

My former co-worker, carpool buddy and maid of honour Michelle moved to London, Ontario a couple of years ago. Since then, she has dealt with many personal challenges, but she has never lost her desire to help other people. This year was a big one for her. She gave up her liver disease awareness work and started focusing instead on helping homeless and underprivileged people in her city. She also got a job, ending a lengthy period of unemployment, and she saw her daughter through some challenging times.

Karyn, who lives in New Zealand, also went through some major life changes. She decided to leave a marriage that was making her unhappy, and in doing so, she has started to rediscover her inner sparkle. In one of my favourite Facebook statuses on her wall in 2014, she said that happiness has become her default state. She starts 2015 with a goal to build a happier life for herself and her three sons.

Caroline, who lives a short way outside of Toronto, went through the shock and heartbreak of unexpectedly losing a very close friend. This brought home to her that we are not indestructible. Therefore, in 2015, she wants to take time for the things that really matter in life.

Corinne lives on the other end of the city to me, and a few months ago I saw her for the first time in years. She took the leap of reopening her business this year, and she enjoyed reconnecting with a lot of people she had lost touch with. She is looking forward to a year of discovery and success in 2015.

Sara, who lives south of the border from me, has a condition called Chiari, that results in debilitating headaches. Two years ago she had surgery, and in 2014, she finally got a handle on the pain. She is hoping that in 2015 she will be well enough to move out on her own.

Bronwyn also lives in the United States, but I have known her forever, since she was a little girl in South Africa. Last year, she quit her full-time job and went to work at a summer camp. This year she intends to continue the work she has started on her self-development, by getting her weight under 200 pounds and by going back to school full-time.

Fellow Torontonian Tawnya had a mixed year. She lost her beloved grandmother, but she ran her first half-marathon. She had two bicycle accidents, but is alive thanks to the fact that she always wears a helmet. In 2015, she wants to do the Army Run again, simplify her life by getting rid of clutter, and embrace challenges and changes instead of running from them.

My cousin Gillian, who lives in the back-arse of nowhere Tasmania, has family that is scattered all over the globe. Last year, she got to be with her whole family as they celebrated her mother’s 80th birthday. Her wish for 2015 is for health and happiness for everyone.

Noella lives in Missouri and is one of the loveliest people I know. She had a bittersweet year – she had a painful disconnect with her stepchildren, and at times her bills exceeded her income. But somehow her bills got paid, she was able to put food on her table and she got a part-time job just in time for Christmas. Her year did have some high points, like a Mothers Day trip to Memphis and a fancy birthday dinner, both with her son. Her health stayed strong and she received wonderful support from family and friends. Her dream in 2015 is to go to Savannah.

Jennifer, also from the United States, worked with her husband on putting their marriage first instead of focusing solely on their children. In 2015, she wants to find full-time work, get her fitness journey back on track, and go on a couples getaway to recharge and reconnect with her husband.

Elle lives in Australia with her husband Ray. In 2014, they flew back to South Africa where Ray proudly walked his daughter down the aisle at her wedding. This year, Elle hopes to find a job that she will be happy in until retirement.

And what about me? Well, 2014 was a huge year for me. I reevaluated my running goals, and through a bittersweet process I decided to take the full marathon off my bucket list. I also made the leap into self-employment and formally registered my own business. I have high hopes for 2015: I am going to run a half-marathon in 2:15:00 or less, I am going to build on the early successes in my business, and I am going to declutter and organize my home.

What were your biggest moments of 2014? What are your hopes for 2015?

This is an original post by Kirsten Doyle, with input from the above-mentioned individuals. Photo credit: Takashi .M. This picture has a creative commons attribution license.

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A Birthday Message To My Son

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To my darling George,

As you go through life, you will hear many people saying that they don’t know what the meaning of life is. What is the purpose behind it all? Why are we on this earth and what are we supposed to accomplish?

Eleven years ago today, I found out the answer, and it is not something that can be put into words. It is something that can only be understood from looking into the eyes of your newborn child as you contemplate the enormous responsibility of creating a life.

Your birth – all 21 hours of it – was an anxious time for me. I had never done this before, and I really didn’t know what to expect. It took me several hours to recognize my labour pains for what they were. I suppose my frantic nesting activities that day should have been a clue. I was almost manic with activity as I flitted from one task to the next, vacuuming, doing laundry, reorganizing the fridge, cleaning windows – all while each pain radiating from the centre of my being brought you one step closer to me.

And then, that magical moment arrived. I lay spent on a hospital bed as your first cries filled the room. You were placed into my arms, and as I felt the warmth of your tiny little body, the thought struck me: “This is it. I’m a mom.”

That day feels like it was five minutes ago and a lifetime ago. Sometimes I look at you and think about how far you’ve come, how tall you are, how you are starting to make the mysterious transition from boy to man. And other times, when you come to me in need of comfort or a hug, when you try to curl your lanky self onto my lap, I look at you and see my baby.

Life with you has been an adventure. You have not followed the same path as most kids. There have been many times when we have had to stray from the beaten track and take the scenic route. The scenic route may take longer and have more obstacles, but it allows us to look at life from a different angle, and when we arrive at our destination, the sense of victory is like nothing else on earth.

I keep hearing about how challenging it is to be the mother of a child who is different. And yes, the challenges are real and cannot be denied. But the truth is that above everything else, being your mother is an honour and a privilege. You, along with your brother, represent what life is all about. Every day, you teach me something new about the things that are really important – love, determination, perseverance, togetherness, family.

You are my heart and soul.

Happy birthday, my son. I look forward to another year of discovery and adventure as you start your next rotation around the sun.

I love you forever,

Mom

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Training Roundup: Focusing On The Why

Why I Run

Why I Run

This has been an odd week for a variety of reasons. I attended a magazine and writer’s conference for most of the week, and that left me with very little time to do other things. But still, I was able to get some good training in.

On Sunday last week, I went out for an 18K run. I didn’t know how it would go, because I wasn’t able to do my long run the previous week. I feared that I might be a little rusty. It went well, though. I completed the distance in just over two hours – a very satisfactory pace. What made it even better was that it took me just four hours or so to recover. That afternoon, I was in the backyard with the lawnmower and just a tiny bit of stiffness.

I rested on Monday, even though I didn’t feel as if I needed to. Things caught up with me on Tuesday, though. I woke up with my bad ankle feeling – well, bad. I was supposed to do a tempo run, but I decided that an extra day of rest might be a good idea.

It turned out to be a good call: on Wednesday I felt fine. So fine, in fact, that I did my 6K tempo run as well as a full weights workout. Afterwards, I felt that pleasant all-over ache that you get after a good workout.

I didn’t have time for a proper workout again during the week, but I did manage to squeeze in a ten-minute run and a few weights on Friday afternoon. So although I didn’t get in all of my workouts, I count this week as a success.

The training was almost secondary to the other aspect of my running, though: the fundraising. I am, after all, doing this for my son George and other kids with autism. This week, I got to reflect on this as my fundraising page got hit with its first donation. I am aiming to raise $1000 this year – a lofty goal in these hard times. That money, if I can raise it, will go a long way to helping children and youth with autism. It can get them art and music supplies, sports equipment, summer camps and job training, iPads and all kinds of other things that can help in their cognitive and sensory development. This is all stuff that can really change the lives of some of these kids.

Sometimes, when I am on my long runs, I feel as if I don’t have it in me to take another step. I am exhausted and sore, and I just want to stop.

But then I think about George, who is going to live with autism 24 hours a day, seven days a week, for the rest of his life. He is brave and determined in the face of his challenges, and he is chock-full of love and sweetness.

If he can live with autism every single day while he brings such richness to my life, surely I can find the same strength and determination to run for a couple of hours at a time.

To sponsor me in this year’s Run for Autism, please click here. All proceeds go to the Geneva Centre for Autism.

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

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133 Days To Go

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In 133 days, 10 hours and 20 minutes (give or take a few), I will be starting my fifth annual run for autism. I run several races each year, and all of them mean something to me. Each race has its own story of struggle and triumph. Every race – even the ones that I don’t do particularly well in – is a victory.

There is no race that brings a tear to my eye in the same way as the Scotiabank Toronto Waterfront Half-Marathon. This is the race that I dedicate to my son George, my amazing child who is so brave and determined in the face of his disability. As I cross the start line of this race, it is with the thought that while I will be done with the run in a little over two hours, George has to live with the challenges of autism every single day for the rest of his life. For him, there is no finish line. He does not get to stop and rest.

He has plenty of triumphs, though. Some of them would go unnoticed in “typical” households, but for us, they represent growth and a step towards independence. There is no such thing as a “small victory” in my family. That is one great thing about having a child with autism. You develop the ability to truly appreciate what others might regard as “the little things”.

I believe that the more help George gets now, the brighter his future will look. So my husband and I do everything we can to provide him with opportunities for living and learning. For me, that includes doing my part for the autism community, in an effort to make the world a better place not only for George, but for other people with autism.

And so I run, and I raise pledges. All funds that I raise go to the Geneva Centre for Autism, where they are used to provide much-needed services for children and youth with autism. Examples of things purchased with the money include musical instruments, art supplies, sports equipment, iPads, summer camps, job training and much more.

Today, I am excited to announce that pledges are open for my 2013 run for autism. At the moment, my fundraising goal is a cool thousand dollars, but I am really hoping that I can surpass that and up my target.

If you have any dollars to spare, please consider sponsoring me for this run.

Together, we can make a real difference to the lives of kids with autism.

To donate, please visit my fundraising page.

 

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Guest Post: You Never Know What Their Quirks Will Become

Today’s post started life as an email that my friend Jacquie sent to the autism parenting group that we both belong to.

Jacquie is the mom of two boys, aged 8 and 16, who both have special needs.

Her older son, Eric, has autism. He has his challenges, but as you will see in this post, he is finding his way in the world. I will not say any more – I will let you read for yourself.

8-year-old Justin has RAD (reactive attachment disorder), autism and intellectual delay. He is one of those unreasonably good-looking kids who you just know will be making girls swoon as soon as he (and the girls) hit puberty.

And Jacquie? Well, she’s just a fabulous friend and a fantastic mom. I am immensely grateful to her for allowing me to share this story of Eric. To special needs parents like myself, this is really a story of hope.

Without further ado… over to Jacquie.

Eric

Eric

 

When Eric was a baby, the only way you could soothe him was singing.

When Eric was a toddler, he used to stand in the windowsill of his bedroom’s gigantic window and listen to a cassette of kid’s songs sung by kids over and over.  When the tape ended, he would scream until someone came and turned it over and pressed ‘play’ again.  Then he’d scream until we got the hell out of the room.

When Eric was a preschooler, he’d sit in front of Windows Media Player and watch the visualizations you could choose to go along with the music that was playing.  He’s spend hours just watching these graphics move and change with the music.  God forbid you try to distract him.

When Eric was in kindergarten, he developed a musical crush on Shania Twain.  I still shudder to think of that year.

When Eric was in grade school, he started to make music using free music programs like garage band.  It was awful.  I didn’t have the heart to tell him he sucked.

When Eric got to high school, he asked for a professional-grade music-editing software suite, so we gave him that for Christmas. Subsequently we began seeing him only for meals and The Big Bang Theory.

When Eric had a little experience with production, he asked for a Mac, which has superior music production capabilities.  He was taking guitar lessons, piano lessons, and music classes at school, so we thought it was probably worth it.  Subsequently we began seeing him only for meals.  There are days’ worth of The Big Bang Theory episodes on the PVR that have never been watched.

When Eric was a week younger than he is right now, a Danish music promoter contacted him and, based on the free content Eric has put out on music sites and on the the contests he has won with his compositions, offered him a 6 month contract.

When Eric was 12 hours younger than he is right now, we signed.  Eric is now represented by a dance music label in Denmark.

His songs will go up for sale on iTunes, Spotify, Juno, and Amazon.  This company will help him design his logo, refine his sound, and establish a presence in the market.

When Eric was a little boy, we mourned the way music took him away from the world.  Now he’s bringing his music to the world.

(Photo used with permission of Jacquie VonHunnius).

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What I Hope

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I hope that George knows I will always support him in whatever he wants to do, and that I will never see his autism as an obstacle.

I hope that when I am weathering the challenges of autism with George, I am acting in a way that helps him instead of hindering him.

I hope that James knows I understand how tough it must be, being the sibling of a child with autism.

I hope that James knows how immensely I value him as an individual in his own right, and that he is not defined by virtue of being George’s brother.

I hope that George knows he is not defined by autism, but that autism is just one part of who he is.

I hope that the moments of weakness that I have – those times when my desperation and sense of being overwhelmed spill over – do not undermine my kids and cause them lasting damage.

I hope that my better moments – the laughter and the hugs and the words of encouragement – build up their confidence and self-esteem.

I hope that I can always be the kind of autism mom who never gives up a fight, no matter how hard and scary it can be.

I hope that when I talk to strangers about autism, or when I write about it, I am doing so in a way that will help both of my kids as they navigate their way through life.

I hope that I will have the courage to stand up to anyone who ever tries to hurt my kids.

I hope that my kids know that when autism parenting just gets too hard for me to handle and I need to spend time by myself, it’s not because of them. It’s because of my own fears and insecurities that I want to protect them from.

I hope that my kids know I love them without reservation, without boundaries, and beyond the ends of time.

(Photo credit: Kirsten Doyle)

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A Portrait of Two Brothers

For the next week, I will be participating in the WEGO Health “Advocating for Another” blog carnival. As I talk about the joys and challenges of raising a child with autism, I also recognize the contributions – of which there are so many – of my younger son James. All of the posts that I publish here this week are dedicated to him.

Today’s prompt: Portrait Post – Write a descriptive portrait of your child/ren. Share qualities that make them, them – and include an image!

They lie curled up together on the bed, their identical-coloured curls tangled together on a single pillow bedecked in a Thomas the Train pillowcase. The larger of the two boys has his arm thrown casually but protectively over his little brother. These boys are both amazing individuals in their own right, but at times like this, it seems that one would not be complete without the other.

Although only one of the children has a diagnosis, I am an advocate for both of them.

On the left is George, almost nine years old. He is tall for his age: one of those long lanky kids who somehow manages to stay skinny despite eating startling quantities of food. He bears a strong physical resemblance to me: our noses are the same shape, our eyes are the same shade of blue, and when we’re tired, both of our left eyes droop ever so slightly in the corner.

George has autism. He has profound delays in speech and social communication, and he gets anxious – almost panicky – when an established routine is deviated from. He has trouble regulating his emotions, and will bang his head in frustration when he is unable to make us understand what it is that’s bothering him. There are times when I look into his eyes and see the depth of his frustration, his sadness, his desperation to communicate in ways that he is not able to. It’s as if he wishes he could emerge from his world, even if just for a moment.

There are times, though, when his world is a wonderful place. He can see patterns where the rest of don’t even know one exists. He sees beauty in numbers: he is comforted by their consistency and their power, and he has always outperformed typical kids of his age in math. If there’s a problem to be solved, he will solve it, albeit by a somewhat unconventional method. He has a quirky sense of humour along with the most infectious laugh you ever heard. When George laughs, the whole world really does laugh with him.

And he has the most beautiful, pure heart that is just bursting with love. I treasure the moments when he says in his sweet lyrical voice, “Go give Mommy a hug”, and then clambers onto my lap, drapes his gangly arms around my neck and buries his face in my hair.

On the right of the bed is James, who is six going on twenty-seven. He came flying into the world like a cannonball one cold Christmas afternoon, and he hasn’t stopped since. He is a bundle of dynamite who zings his way around life with a seemingly endless supply of energy. His face is bright and vibrant, brought to life by shiny blue eyes that view the world with wonder and curiosity.

It is hard for him, being the sibling of a child with autism. Things happen that he perceives to be unfair, but in spite of this, his love for his brother does not waver. He tells me that he loves George more than he loves me – and I am completely fine with that. When George is having a meltdown, James treats him with concern and compassion. Many times, he will be the first one to know what George is trying to say and what he needs. We sometimes see George seeking out the comfort of his brother – comfort that James is always ready to give.

James shows wisdom and empathy beyond his years. But when he wakes in the morning and sleepily climbs into my lap, his little body melts against mine and I am reminded that he is just a baby. He may be a little brother with a big brother’s role, but he needs to be nurtured, cared for, protected. We need to be make sure that as he grows up, his role as George’s brother is balanced by his identity as James, as an individual with his own hopes and dreams.

I worry about the future for both of my boys. They will each have their challenges to deal with, and their battles to fight.

But now, as they lie sleeping, they don’t have a care in the world. And that’s just the way it should be.

(Photo credit: Kirsten Doyle)

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10 Useful Skills For Autism Parents

Autism parents frequently have to do things that other parents don’t. Our kids are so different, what with their limited communication skills, their sensory challenges, and at times, their superhuman physical strength. It is impossible to parent a child with autism in the same way you would parent a typical child (which means that when you have both an autie and a typical child you have to adopt two different parenting styles, but that’s another post for another day).

In the beginning, it’s hard, knowing what to do. And in a way, it never really gets any easier. But there are things I have learned from experience, that are now second nature. Here are ten of my favourites.

  1. Drywall repair. Many auties, my son included, are headbangers. They may bang their heads out of anger or frustration, or simply to get attention. And then they bang their heads, they don’t mess around. They give the wall a good solid WHUMP that’s enough to make the room shake. The drywall invariably takes some punishment. The inside of my house looks a bit like a pitted golf ball, and there are places where the impact of my son’s head has caused actual holes – big, gaping holes.
  2. Mixed Martial Arts. My husband likes to watch Ultimate Fighter on TV, and although I don’t watch it myself, I have absorbed some of it through osmosis. This has proved invaluable in times when my son has had a meltdown. When most kids have meltdowns, they simply lose their tempers. When auties have meltdowns, they thrash on the floor, bash their heads on the closest hard surface, and can risk hurting themselves quite badly. Even as they are kicking and screaming, they have to be kept safe. Hence the MMA skills. I have become quite the expert at using my bodyweight to restrain my son from hurting himself. The difference between me and the Ultimate Fighter guys, of course, is that I try to avoid causing pain, I don’t get paid big money for my efforts, and I have a mental age that’s higher than my shoe size.
  3. Dishwasher Racing. My son hates – and I mean hates – for the dishwasher to be open. Anytime I have to unload it and repack it, I have to deal with this kid repeatedly – and with increasing volume – telling me to close the dishwasher. He plants his bum on the kitchen floor, right in front of the sink, so I cannot get to the dishes. Sometimes I actually have to slide him out of the way. I have taken to setting the oven timer whenever I start doing dishwasher stuff, and the idea that he can visually see how long it will take does seem to soothe him. But God help me if the dishwasher is not packed, closed and switched on by the time the timer expires.
  4. Stealth Hair Cutting. My son, like many other kids, dislikes haircuts. But he doesn’t dislike haircuts in the same way most other kids dislike haircuts. He dislikes haircuts in the same way most people dislike having a kidney forcibly removed while fully conscious and able to feel pain. Rather than risk traumatizing my child, I give him haircuts while he is sleeping. This involves a lot of patience, as I have to wait until he is very asleep. If he’s not asleep enough, he will wake up as soon as I touch his hair and he will scream loudly enough to startle the llamas in Peru. I have to creep around in the dark like a burglar, and sometimes it takes several nights to get the job done.
  5. Mediation. OK, this is a skill that any parent with more than one child has to learn. But when one child has autism and the other doesn’t, you have to raise your mediation skills to a whole new level. It’s a bit like trying to sort out a dispute between one person who only speaks Zulu and another person who only speaks Icelandic, when you only speak Pig Latin.
  6. Jumping Through Hoops Of Fire That Are Constantly Moving. OK, that may be a slight exaggeration. But dealing with school boards can really feel that way when special needs concerns are brought into the mix. I am getting really good at making suggestions to teachers and therapists that are phrased in a way that makes it sound like it was their idea. If it gets what my son needs, I really don’t care who gets the credit for it.
  7. Improv. If I had a dollar for every time a random stranger made a stupid remark about my son needing “a good hiding” or “proper discipline”, I’d have enough for a five-star trip to New Zealand, including flights, hotels, meals, and a Lord Of The Rings tour. I have learned the art of the Quick Comeback. If someone is being rude and intrusive while my son is having a hard time, I am no longer shy about saying things like, “My child has autism – what’s your excuse?”
  8. Distraction. This is a concept that most autism parents are well aware of. Sometimes I can just tell that a meltdown is just around the corner, and I want to do everything in my power to head it off at the pass. I get favoured activities or treats within arms’ reach, try to stop or somehow control whatever is winding him up, talk to him, sing to him, throw out mental arithmetic problems at him (the kid’s like Baby Rain Man with numbers – what can I say?) I have about fifty-fifty success with my efforts – but I will take that over ninety-ten in favour of the meltdown.
  9. Planning for Change. If there’s one word that makes autism parents everywhere tremble with fear, it’s change. Our kids don’t do well with change. They like the same places, the same people, the same routines. When we go on vacations, we have to take most of our family’s belongings with us so that we can replicate our home environment as closely as possible. Every summer, we put together social stories in preparation for the new school year, that include pictures of the new teacher and classroom, and we take our son to the school so he can get used to – or stay used to – playing in the playground there. I contingency-planned my wedding like it was going out of style – and all of those efforts paid off.
  10. Appreciating the Little Things. Where an autism parent is concerned, there is no such thing as a small accomplishment. All achievements, ranging from new words added to the vocabulary to giant cognitive leaps, are causes for celebration. As the parent of a child with autism, I have really learned how to smell the roses. Life is full of challenges for me and my family. But every single day is a blessing, and every single night, when I kiss my children goodnight, I am grateful for the people they are. And no matter how hard the day has been, I feel like the richest person on the planet.