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Autism Advocacy: 8 Survival Tips For Parents

April 13, 2015 By

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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.

Filed Under: Advocating for Another, autism, Education, parenting, School, Special Needs Tagged With: , , , , , , , , , , , , , , ,
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Autism, Advocacy And Hope

April 12, 2015 By

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.

Filed Under: Advocating for Another, autism, Education, School, Special Needs Tagged With: , , , , , , ,
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A Portrait of Two Brothers

August 21, 2012 By

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)

Filed Under: Advocating for Another, autism, Brothers, Children, family, life, WEGO Health Tagged With: , , , , , , , , ,