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Autism Advocacy: 8 Survival Tips For Parents

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Yesterday, I shared my family’s recent success at securing a good Grade 7/8 program for my son, who has autism. The short version of the story is that my husband and I knew immediately that the program George was slated for would be very bad, not only for him but for his classmates. And so we went to bat for the kids. Over a period of seven months, we had meetings and phone calls with all kinds of people in the school board. A couple of weeks ago, George’s principal called to tell us that a Grade 7/8 program was being introduced in his current school. The news could not have been better. We would have been OK with a good program at any school, but George’s current school, which is fantastic in so many ways, was definitely the prize we were hoping for.

George was diagnosed with autism seven years ago. In that time, I have learned a lot about what works and what doesn’t work when it comes to fighting in his corner. Here are some of the big ones.

1. Know what your child’s rights are. Don’t go into any meeting with your child’s teacher, principal or any school board representative without having a clear idea of what you are entitled to ask for on behalf of your child. A few pointers: in Ontario, you cannot be forced to homeschool, you cannot be forced to relocate and you cannot be forced to accept a shortened school day. Your child is entitled to an education in a public school in his or her neighbourhood, with the same number of instructional hours as any other student, regardless of what his or her abilities or disabilities are.

2. Have a clear idea of your desired outcome. This is not always as easy as it sounds. Sometimes we simply want things to be different, or better. You have to ask yourself what that looks like. Perhaps you love the teacher but feel that extra assistance is needed. Maybe you simply want clearer IEP goals or better support during transitions. Or maybe you need a completely new direction for your child. Whatever it is, you have to know what you are aiming for. Ask yourself what the outcome would be if you got to be in charge of all the decisions.

3. But be prepared for compromise. This means knowing what you are prepared to settle for. In my case, first prize was a new program for George in his current school. There was always a chance that that wouldn’t happen, so we were prepared to settle for a good program at a different school. Aim for what you are really, really hoping for, but have some acceptable alternative scenarios kicking around in your mind as well.

4. And know what you will not accept. Sometimes, you may be offered a “solution” that just doesn’t work. You are not compelled to accept anything just because you’re told it’s the only option. What we were not prepared to accept was the program George was originally supposed to go to. We made that crystal clear early on in the discussions, and we did not budge. Negotiation is always key in discussions like this, but you have to be clear on the points that you will absolutely not move on.

5. Don’t go in looking for a fight. If you walk into the room assuming that the people you are meeting with are on the same side as you, the entire tone of the meeting can swing in your favour. The thing is, most of the time they will be on the same side as you. Advocating for your child does not always have to be a battle. Principals and teachers are caught between a rock and a hard place. On the one hand, they genuinely care (or they should) about the best interests of your child. On the other hand, they have to operate within rules and procedures that they cannot control. Show understanding towards them, and more often than not, they will show understanding towards you.

6. But don’t let anyone intimidate you. Look, from time to time you will encounter ass-hats. That’s just life. Smile serenely, know that if someone is being an ass-hat to you, they’re probably an ass-hat to everyone, and identify who your allies are. If there’s no ally in the room, politely tell them you need to reschedule the meeting, and go out and find an ally. You can bring anyone you like. You can even hire an advocacy consultant to accompany you. We were fortunate in that George’s principal was firmly on our side right from the start.

7. Remember that the special education community is small. No matter how frustrating the process is, no matter how badly you want to scream and swear, try your best to take the high road. People in the special education field tend to crop up again and again in different capacities. The person sitting opposite you today, whose head you badly want to rip off, could be in a position to help you three years from now. Don’t let anyone walk all over you, but keep your cool and stay polite.

8. Be persistent. If a meeting doesn’t yield acceptable results, call another one. If you agree on a course of action but something isn’t working, go back and see if something can be adjusted or tweaked. You are never obligated to just accept something for your child that is not working.

This is an original post by Kirsten Doyle. Photo credit: Woodleywonderworks. This picture has a creative commons attribution license.

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Autism, Advocacy And Hope

George writing wordsMy son George started Kindergarten just four short months after being diagnosed with autism. It was a bit of a terrifying time for me: I felt as if I had been thrown into this mysterious world full of mazes and obstacles with no map, no compass, and no fixed destination. I didn’t know where I was supposed to be going or how I was going to get there. I had no idea how to navigate the terrain of special education.

Over the seven years between then and now, we have had to do our bits of advocacy, but for the most part, George’s time at school has been very positive. He has had a series of compassionate, competent teachers and every year, we have seen progress. We have kind of breezed through the K-to-6 years feeling good about George’s education.

In recent months, this sense of security almost came to a screeching halt. George, currently in Grade 6, is in a K-8 school that we love. The teachers are fabulous, the principal encourages open dialogue with parents, and the kids in special needs classes are treated with kindness and respect by their typically developing peers.

The only problem with the school is that it does not have a special education program for Grade 7 and 8, so we were facing the prospect of sending George to a program in a neighbouring school. When we went to visit the program last year, when George was finishing off Grade 5, we were not happy with what we saw. We just knew, with that instinct that parents have, that if George went into that program, we would start to see a regression within days.

And so we started the process of advocating for a better Grade 7/8 placement, not only for George, but for all of his classmates. Starting with the principal at his school, we escalated the issue, insisting on meetings with trustees, superintendents, and anyone else who might have any kind of influence in deciding my son’s future.

About seven months after our first meeting with the principal, we got word of the school board’s decision: George will not be going to the overcrowded, under-resourced program that we saw and hated. Instead, a special education Grade 7/8 program is being introduced in his current school. George and his classmates will stay in the environment that they know and love. They will continue to be a part of a student community that is caring and supportive, with a principal who has been firmly on our side all the way.

Advocacy can be difficult and frustrating. It can be time-consuming and, at times, heart-breaking. But when it results in a better future for many children who need other people to fight for them, it can be the most rewarding thing in the world.

Come back tomorrow for some tips on advocating for your children.

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

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His Brother’s Keeper

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It is a cold snowy afternoon, and the boys have just finished doing their homework. George – eleven years old now and as tall as me – is sitting on the couch trying not to cry. I am on the floor with my back up against the couch, holding his foot in my lap. I start ministering to his sore toe as gently as I can, knowing that no matter how hard I try, it’s going to hurt.

For the last couple of weeks, George has been plagued by an ingrown toenail. He was at the doctor earlier in the week – a feat in itself for this boy with autism who finds doctors to be mysterious and scary – and I am carefully following the care-and-cleaning instructions that I have been given.

He tries so hard to be brave as I clean and bathe his toe, but he cannot help getting distressed. As he cries out in pain, James suddenly appears in front of us. James – nine years old and full of energy – is just in from throwing snow in the back yard. His gaze moves from his brother on the couch to me on the floor surrounded by First Aid supplies.

“I want to do it,” he says.

“You want to do what?” I ask, not understanding.

“George’s toe,” he says. “I want to do it. George is my brother. I’m the one who gets to take care of him.”

I regard my son, blown away yet again by how much love and compassion is within him. I think about the practicalities of him dressing George’s toe and how I have already been kicked several times during these First Aid sessions. I don’t want James to get hurt.

But my Spidey-sense is telling me to listen to James. I switch places with him, and following my instructions, he calmly takes care of George’s toe. George is still crying but he is visibly less distressed. Maybe James’s small, light fingers are gentler than mine. Or maybe George is responding to the love of his brother.

James uses a little bit too much of the antiseptic lotion, and the dressing and bandage are a little haphazardly applied. But none of that matters next to the waves of kindness that are radiating from James.

With the job done, James gently kisses the newly applied bandage and gets onto the couch.

“You’re my George,” he says, wrapping his arms around his brother.

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

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For James On His Birthday

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To my darling son James,

Nine years ago today, you finally decided to leave the comfort of the womb and join us in the world. You were a week overdue: either you were very comfortable where you were, or you figured that we would need an extra week of quiet before the adventure began.

The day of your birth was incredible, filled with little moments that I will never forget – like the little kid in the hospital coffee shop who was convinced that I was Santa Claus. You can’t blame him: it was Christmas morning and I had a massive belly and a Santa hat. The best moment of all, though, was when you came flying into the world like a cannonball, screaming in outrage. There was never any doubt that you had a very healthy pair of lungs and an abundance of energy.

Since that day, you have filled our lives with a very special kind of magic. You are never afraid to explore and discover not only what is in the world, but what is within yourself. Your massive imagination takes all of us on weird and wonderful journeys, and the front of my fridge is covered with your fabulous artwork. Your creativity combined with your love of animals has given us a zoo of animals that have been lovingly crafted by you. As I write this, you are transforming ordinary cardboard into a set of Wild Kratts creature power disks.

You have the biggest heart of anyone I know. You are one of life’s true givers who experiences absolute joy through the act of making other people happy. Every single day, I am on the receiving end of your spontaneous hugs and little handmade gifts and notes. I see the kindnesses you extend to your friends without even having to think about it. Being a caring person is so much a part of who you are that your school gave you an award for empathy.

The love that you have for your brother is genuine and complete. You do not take anything for yourself without first making sure George has something too. If George’s autism is making things difficult for him, you calmly and patiently do whatever you can to soothe and comfort him. You play with him, you share with him, you protect him. You take care of him so beautifully, and yet you think of him as your hero.

I know that sometimes I cannot keep up with your boundless energy and your constant chatter. But I absolutely love that those things are a part of your character, and I would not change a single thing about you.

I love you, and it is a joy and an honour to be your mom.

Happy birthday.

Lots of love,
Mommy

 

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Parenting: Live And Let Live

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Early this morning, while I was sipping my first coffee of the day and browsing through my Facebook feed, I came across a thread that made me feel incredibly sad. It was a post about co-sleeping, and one of the first comments was from a woman saying that she believed co-sleeping was fine as long as it was done safely, that she had co-slept with her first child and that she would co-sleep with any future children.

The thing that made me sad was how other moms lambasted this woman, told her that she was uneducated, and said that if she lost a baby, it would be her own fault.

I have no interest in starting another debate about co-sleeping. Quite frankly, I don’t have a strong position about the subject one way or the other. One of my babies slept in a crib, the other co-slept with me. I did what I felt was best for each child, and in both cases, I made safety the paramount concern.

What I do have a strong position about is the idea that the vast majority of parents do what they think is best for their children, most of them research their choices, and most of them do everything they can to keep their kids safe. Unless a mother is being deliberately and blatantly abusive or negligent, she should be allowed to make those choices for her children without worrying about what other people think.

It always fascinates me that a species as diverse as the human race tends to think in such absolute terms, and parents are no exception to this. Many of them tend to believe that there is only one right way of doing things, and it’s their way, and anyone who does things differently is a <insert insulting adjective> parent.

Frankly, I’m tired of it. When will parents just accept that what’s right for them is – well, right for them? The fact that some moms breastfeed their kids until Kindergarten does not give them the right to criticize moms who are unable to breastfeed or who simply choose not to do so. Parents who limit their kids’ screen time should not be accused of being unreasonable, and those who do not should not be branded as lazy. If you let your baby “cry it out”, you are not heartless and mean, and if you pick up your baby whenever he cries, you are not spoiling your child.

Your own personal experience – no matter how tragic – does not entitle you to judge other people. Your child’s autism diagnosis may have come shortly after a vaccination, but you don’t get to accuse pro-vaxers of being uninformed and ignorant. Maybe your formula-fed child developed life-threatening food allergies, but that doesn’t give you the right to tell other formula-feeding moms that breastfeeding would be possible if only they would try harder. If your baby died while co-sleeping, I am truly sorry for your loss, but please don’t go around telling parents who choose to co-sleep that they are potential child-killers.

I’m not suggesting that we all shut up about our beliefs and opinions, or that we stop sharing our experiences. On the contrary – parents who speak out about what they go through can be valuable resources to other parents who are struggling with their choices or looking for information about their options. It’s even OK to be passionate about something that you have a strong opinion about.

Just be respectful about it, that’s all. No blame, no finger-pointing, no judging.

This is an original post by Kirsten Doyle. Photo credit: mariana f. This picture has a creative commons attribution license.

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Ice Buckets For Autism

The Reason I Run

The Reason I Run

Yesterday, I spoke about the aspects of the ALS Ice Bucket Challenge that bother me. At the same time, I acknowledged that this campaign has been wildly successful in raising funds and awareness for ALS. Although I have been nominated, I have declined to participate – not only because of the reasons stated yesterday, but because there is another cause that is nearer and dearer to my heart. I am not in any way diminishing the ALS cause, I am just saying that with my limited funds and more limited energy, I have to focus my efforts on a cause that directly impacts my family.

Every year, I participate in the Charity Challenge of the Scotiabank Toronto Waterfront half-marathon to raise funds for autism services, and this year is no different. The money I raise goes to the Geneva Centre for Autism, a wonderful organization that has provided endless support not only to my autism boy, but also to his younger brother, my husband and myself. I can say without reservation that my son’s life – all of our lives – would be very different if it weren’t for the Geneva Centre.

The thing is, though, that fundraising is hard, and it gets more difficult every year. People struggle. They have difficulty paying their bills on time and providing for their families. Life in this day and age is not easy. And the people who do have funds to donate are increasingly selective about where that money goes, and rightfully so. There have been so many stories about donated funds lining the pockets of people who are already rich.

I can give my personal assurance that money donated to the Geneva Centre for Autism does not go towards ridiculously high salaries or swanky events. It is used for things like art supplies and musical instruments for kids with autism, job skills training for those leaving school, iPads for those in need of communication assistance, and summer camps for children and youth who need help with social skills development. This is money that is used to help real children and their families. It is money that genuinely makes a difference and can change the course of a young person’s life for the better.

This year, for those who do have a few dollars to donate, I am adding an element of fun to my fundraising efforts. It is a variation of the ALS campaign, and I am calling it “Ice Buckets For Autism”. The premise is simple: for every $100 that I can raise for autism, I will dump a bucket of ice water on my head. In keeping with my concerns about using water wisely, I will dump it in such a way that it can later be used for something else.

There are no nominations and there is no stipulation as to how much each person should donate. People can simply donate if and how much they choose, and every time the hundreds digit of my fundraising total changes, I will drench myself and provide photographic and video evidence of the act.

I am hoping to be drenched many, many times.

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

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9 Rules Of Parenting That I Don’t Follow

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1. Don’t let your child have more than 30 minutes of TV or computer time a day

My kids probably get 30 minutes of screen time just before they leave for school in the mornings. Contrary to what we keep hearing, their brains are not turning to mush and they don’t live in a catatonic zombie-like state. They are bright and energetic, there is nothing wrong with their motor skills or my neurotypical child’s social skills, and the games that my autism boy plays have a noticeable positive impact on his speech.

2. Don’t feed your kids processed food

Whoever made this rule probably didn’t have picky eaters. Like most parents, I try to feed my kids a healthy balanced diet that includes fruits, vegetables and all of the right nutrients. Some of the food they eat regularly is processed, and I am unapologetic. If I were to eliminate all processed foods, my younger son would start to look like a starving refugee. The kids will grow out of the processed food and into “real” food – I am already seeing this with my older son, who used to eat nothing but grilled cheese sandwiches with processed cheese.

3. Don’t ever yell at your kids

According to The Experts, yelling at your kids is ineffective and psychologically harmful. Apparently, talking to them softly will cause them to stop what they are doing and listen to you. That has got to be the biggest joke of the century. There are times when yelling is the only effective way of getting them to stop whatever chaos they’re causing. Do I constantly yell at them all day, every day? No, and if I did I would deserve a slap upside the head. But the occasional bout of yelling in frustration is not leading my kids to a lifetime of therapy. They know I love them, because I tell them all the time.

4. Don’t expose your kids to germs

I’m not stupid about germs. I’m not going to dump my kids into the middle of a crowd of tuberculosis patients. I make them wash their hands before meals and after using the washroom. They are expected to maintain acceptable standards of hygiene. But I believe that there is such a thing as too much cleanliness. If my kids touch an unsterilized surface like the handle of a shopping cart, I’m not going to go to war using a bottle of hand sanitizer. I don’t keep them away from places “just in case” someone has a cold. They are strong, healthy kids who rarely get sick.

5. Sit down at the table and have your dinner as a family

I’ve read the statistics: families that eat dinner together at a dining room table are less dysfunctional and more connected. The first problem with that is that we don’t actually have a dining room table. The second problem is that getting the autism boy to sit down for an entire meal is a bit of a challenge. Even in restaurants, he has to get up and wander around from time to time. Our family is admittedly a little bit dysfunctional (show me a family that isn’t), but we are highly connected with one another.

6. Send your kids to bed at the same time every night, even on weekends

I have nights when I’m absolutely exhausted, and I have other nights when I’m too wired up to even think of sleep. My kids are the same. They don’t get tired at the same time every night, so they don’t go to bed at the same time every night. Generally, I try to make sure they’re in bed by 8:30 during the week, but if it turns out to be 9:00 from time to time, it’s not end of the world. Not only that – they are allowed to stay up later on weekends.

7. Treat both of your children equally

I have one son, aged 10, who has autism. He doesn’t talk much and he struggles with social interactions. I have another son, aged 8, who is neurotypical. He is outgoing and talkative. The boys are very, very different from one another. They have different capabilities, different levels of cognitive functioning, and different needs. I love them both with all of my heart, but they have to be treated differently, because they are different people.

8. Always put your kids’ needs ahead of your own

If one of my kids is cold, I will give him my jacket. I make sure my boys are fed before I eat anything myself. If they are sick or scared in the middle of the night, I gladly sacrifice my own sleep so I can comfort them. My heart bursts with love for them, and I live to make them happy and take care of them. Sometimes, though, I have to think of myself first. I have to tune them out to do my own thing, or I have to go for a run before I take them to a park. Because sometimes, if I don’t take care of myself, I am too burned out to take care of anyone else.

9. Don’t let your kids do dangerous things

Look, I’m not going to buy my 8-year-old a Harley Davidson or encourage him to go bungee jumping. But if he’s doing something daring on the playground or riding his bike too fast around our cul-de-sac, I’m not going to stop him. If he falls, he falls. He might get a grazed knee or a bump on the head. If that happens, he’ll get First Aid and the appropriate amount of sympathy, and he will have learned something about what he is physically able to do. I’d rather let my boys test their limits while I’m around to watch, instead of restricting them and forcing them to experiment without proper supervision.

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

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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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Autism Awareness Without Aggravation

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Today is World Autism Awareness Day. All over the world, people, governments and companies are participating in the “Light It Up Blue” campaign, which involves burning blue light bulbs in solidarity with individuals and families affected by autism. What this means is that my social media feeds are being bombarded with posts and messages from autism parents explaining why World Autism Awareness Day should not be observed.

I am always baffled by how controversial autism awareness campaigns are. We don’t see this level of animosity and division with other causes. I have never seen or heard a cancer survivor say that they don’t want cancer awareness to be promoted. Epilepsy, mental illness and many other illnesses and disabilities have their awareness days, and those days are embraced by those suffering from the afflictions and the families who support them.

I mean, since when is autism awareness a bad thing? Yes, I know that awareness without acceptance and action means nothing. But acceptance and action cannot happen if the awareness does not come first. Awareness is not this empty concept that many people claim it is.

noun: awareness; plural noun: awarenesses
1. knowledge or perception of a situation or fact.
2. concern about and well-informed interest in a particular situation or development.

Awareness is when someone cares about a certain issue and wants to learn more about it. As far as I’m concerned, the more people who care about autism and want to learn more about it, the better. With awareness comes a greater level of acceptance and education, as a result of which my son and other kids like him have a happier life with more opportunities.

Am I supposed to blow that off just because the Light It Up Blue campaign supports Autism Speaks? Am I supposed to hate Autism Speaks because they don’t direct funds to the families of people who are affected by autism?

Well, for a start, Autism Speaks is an organization that exists for the purposes of supporting research, and they have never claimed otherwise. They have never pretended to be a charity that gives money to families.

More importantly, though, the Light It Up Blue campaign does a lot more than fill the bank accounts of the charity that some in the autism community love to hate. Because of the campaign, TV stations and newspapers run special features about autism. Some stores offer discounts on educational toys and books. Schools have dialogues about autism. They encourage students to ask questions, to have discussions, to learn ways to talk to and be with the kids in their schools who live on the spectrum.

All of this, to me, is a good thing.

I am not out to convince people to buy blue light bulbs, or to support Autism Speaks or anyone else. We all have our own views and we’re all entitled to them. All I really want is for World Autism Awareness Day to be just that: a day for individuals, organizations, governments and the media to actively promote awareness of autism.

It should not be a day for people within the autism community to fight with anyone who doesn’t share their views. It should not be a day for controversy and divisiveness. It should be a day for the autism community as a whole to band together in support of what we all really want: a better world for people with autism.

This is an original post by Kirsten Doyle. Photo credit: https://www.flickr.com/photos/coolgirlsar/. This picture has a creative commons attribution license.

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My Baby Forever

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Sometimes, I look at my older son George and lament the fact that he is growing up so quickly. He is ten now, and he has grown too big to sit on my lap. He is the same height as my mother-in-law and he has outgrown four pairs of shoes in the last year. The most scary thing of all is that he has started to show signs of early puberty. Before I know it, I will be dealing with the mysterious combination of autism and adolescence. He is going to keep getting taller and stronger, his voice will deepen, and he will get old enough to shave.

But then I have mornings like today. I always wake up earlier than anyone else, curl up on the couch with coffee and my phone, and have some quiet time to myself. I check my emails, see what’s happening on Facebook, maybe play games for a while. It’s my way of gently easing myself into the day before the the rest of the world wakes up.

This morning I was playing a few Words With Friends moves when George came padding into the room. He flopped down on the couch beside me and draped his lanky arms around my neck for hug as he rested his head on my shoulder. We sat like that for a few minutes, just the two of us in our own little universe, and then he lay down on one end of the couch, appropriating the blanket that I had been using.

I looked over at my boy, at his hair that was all mussed-up and his face that was puffy from sleep, and he gave me a gentle smile. In that moment, he looked young and vulnerable.

And I realised that no matter how old and big he gets,  he will always be my baby.

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