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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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5 Signs That I’m Approaching Burnout

April 20, 2013 By

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If you’re anything like me, you occasionally reach the point where your mind and body just shut down to prevent you from overburdening it any further. It’s always better, in my experience, to slow down and take a deep breath before reaching that point. I’m not always good at recognizing the signs,though, and when I do, I don’t always have the ability to prevent the train wreck that’s rapidly approaching.

The tell-tale signs may be different from one person to the next, and I would suggest that at a time when things are sailing along just fine (in other words, don’t wait for the crisis), everyone take a few minutes to reflect on what those signs are. Here are mine:

1. I lose the ability to make decisions. I’m not even talking about big stuff, like whether to move my kid to a different school, or whether to change jobs. I’m talking about stupid things, like what to cook for dinner. Any time I have to decide anything, I’m overcome with a feeling of panic that varies in intensity, but always makes me feel somewhat immobilised.

2) I lose interest in the things I like. If I stop caring about running, or if I don’t want to write, chances are that I’m approaching burnout. There are few things that scare me more than having to force myself to go for a run.

3) Little things annoy me. Things that I wouldn’t notice under normal circumstances make me want to jump up and throttle someone.

4) My relationship with food goes all out of whack. Either I stop eating entirely, apart from the odd nibble here and there to stay alive, or I go nuts and eat everything in sight.

5) Three consecutive hours of sleep counts as a “good night”.

What are your signs of burnout?

(Photo credit: bark. This picture has a creative commons attribution license)

Filed Under: Burnout, Health Activist Writers Month Challenge, life, Warning Signs Tagged With: , , , ,
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In Pursuit Of A Dream

January 17, 2013 By

When I finished high school 25 years ago, I had the idea that I would become a research psychologist. I was interested in the clinical aspect of it, but I did not think it would suit my socially awkward personality. If I went into research, though, I would be able to satisfy my desire to try and figure out what makes people tick. In some small way, I might even be able to make the world a better place.

I graduated high school with good grades and went off to university to pursue a Bachelors degree with a psychology major.

You know how life has this way of barging in and messing up all your plans?

Life barged in and messed up all my plans. During my second year at university, I met someone who I initially thought was charming, but who turned out to be a chaotic and disruptive force. I compare that part of my life with a tsunami. A gigantic wave rushes in and knocks over everything in its path. When the water recedes, the landscape is completely different. Some things have been turned upside down, others have completely disappeared. Virtually nothing is recognizable, and the only way to move forward is through a process of recovery and reinvention.

One thing is clear: after such a disruption, nothing can ever be the same again.

I did finish my Bachelors degree, but I abandoned the dream. I did not have good enough grades to pursue further studies, and even if that weren’t the case, my sense of self had been so completely obliterated that it would not have been possible.

In the 20-odd years since then, a lot has happened. I spent some time drifting, both metaphorically in my own mind and literally through travel, and eventually washed up in a career. I moved to Canada, had children, got married. I have buried my father, been thrust into the role of special needs mom, started running and discovered a passion for writing.

I have a lot to be thankful for, including the fact that in spite of the storm that I endured all those years ago, I have managed to make a life for myself. There has always been an undertone of regret, though. Regret for the poor decisions I made back then, and regret for the fact that I had a dream that got swept away. While the career I did end up in has been pretty good, I have never been able to shake the feeling that this is not what I want to do, that I have been living my whole adult life in response to things that happened a long time ago.

Maybe I cannot pursue the dreams I had back then. Maybe those dreams belong in the past along with all the ugly stuff that happened there.

What about new dreams, though? Is there anything stopping me from pursuing them?

In a move that has surprised absolutely no-one except myself, I have made the decision to go back to school. I have enrolled in a post-graduate certificate in fiction and non-fiction writing, and this will be followed up with a Masters degree in creative writing.

It is daunting. Quite apart from the extra time commitment that this will involve, my mind keeps drifting back to how my first shot at a university education went so wrong. I freely admit that I am scared. A part of me feels like that naive kid who made dumb choices. On the other hand, though, this might be a chance of personal redemption, an opportunity to get it right.

I owe this to myself, and I owe it to that scared, overwhelmed kid of long ago who gave up a dream.

(Photo credit: Raoul Luoar. This picture has a creative commons attribution license.)
Filed Under: Dreams, life, School, Second Chances, Trauma Tagged With: , , , , , ,