Autism Advocacy: 8 Survival Tips For Parents


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.


Untouchable Moments


My son George has a thing about hair – specifically, my hair or, if I’m not available, hair that is similar to mine. For a while, whenever we went anywhere, we would have to deal with the problem of him going up to random strangers with long dark hair, and stroking them on the head. We saw the need to nip this in the bud as quickly as possible: it was cute when he was seven or eight, if it was still happening by the time he got to twelve or thirteen, it would be downright creepy.

We have more or less gotten that impulse under control. When we are out, George leaves strangers and their hair alone. But it is still a big problem at home. He obsessively touches my hair, kisses it, and nuzzles his face into it so he can smell it. And it’s – you know – quite a heavy-duty invasion of my personal space.

It’s a tricky problem to solve. My kids love physical contact, and my husband and I are happy to oblige them. We are generous with hugs and snuggles, we chase the kids and play wrestling games with them, and when the weather is nice we go into the back yard and play games like tag. And lately, because George seems to be incapable of touching me without touching my hair, I have caught myself avoiding physical contact with him, either by retreating to places where he cannot get me, or by gently pushing him away.

For a mom like me who’s always been into the hugs and cuddles, it’s a terrible feeling, not wanting my child to touch me. I feel guilty and sad. I want to hug my boy, but I don’t want the accompanying hair-stroking and sniffing that goes with it. Today I’m feeling particularly rough, because George was awake all night, and he was at my hair. All night long. And today, every nerve ending in my body feels on edge. I feel like I will scream if George or anyone else touches me. And I feel like a truly awful mother for declining hugs and insisting on doing things by myself.

I recognise that my hair fulfills some sensory need in George – some complex need that I don’t understand and that he, with his autism, finds it impossible to explain. I sometimes snap at him for being all over my hair all the time, and then I feel bad, because it’s not his fault. It’s not something he can help, and until we can figure out some other way for him to satisfy that sensory need, it’s not really something I can help either.

The obvious solution – one that has been suggested to me several times – would be for me to simply cut my hair. But I am loath to do that, for a number of reasons. Long hair is easy to maintain. Short hair requires styling, and I don’t have the money or the inclination to keep going to the hairdresser in order to look respectable. In addition, when it’s time for me to go running, it’s really easy for me to tie it all back in a ponytail. But all of this is beside the point: I just don’t know that cutting my hair would solve the problem.

I’m sure – or I hope – that this is one of those problems that we will solve, that we will look back on as a memory at some point in the future. For now, I seem to be stuck with my permanently aching scalp and what I hope is a reversible aversion to physical contact. I am hopeful that sooner rather than later, I will be able to fully enjoy hugging my beautiful boy again.

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