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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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Training Roundup: Adaptation

May 30, 2014 By

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The trouble with drawing up a training schedule is that I feel obligated to follow it. This is, under normal circumstances, not a bad thing. The schedule holds me accountable and keeps me on track. If I stick with the program, I can be reasonably confident that I will meet whatever goal I have set out to accomplish.

The trouble starts when something happens that forces me to deviate from the schedule. Changes in plans make me feel vaguely anxious, and if I don’t get to do a run that I’ve been mentally gearing myself up for, it’s a little disruptive to my psyche. But we all know that life is that thing that happens while we’re making other plans, and sometimes we just have to roll with whatever life throws at us.

Not that life has thrown me anything major in the last week. In fact, I knew going into the week that my training schedule would have be adjusted. I volunteered at the Toronto Women’s Half-Marathon on Sunday, and I didn’t want to go for a long run on top of that. I was on my feet for the whole morning, and in any case, I wanted to hang out with my family instead.

Plan B was to go for a long run on Monday afternoon instead. I really needed two hours to complete the distance, and due to a series of unforeseen issues that had to be taken care of right away, by the time I set out I only had an hour available to me. That turned out to be plenty: it was very hot on Monday afternoon, and because my body has not yet acclimatised to the warmer weather, there is no way I would have been able to pull off 18K. I did about 9K, and that just about killed me. Before I had done the first kilometre, I knew I was in trouble. During the run, there were a couple of unscheduled walking breaks, plus one lean-against-a-tree-and-cry break.

On Tuesday I had a rest day. I had planned to rest, but I wouldn’t have had a choice anyway. Monday’s run had the effect of completely draining me of energy. I was exhausted beyond belief, to the extent that I worried about whether Wednesday’s run would happen.

On Wednesday morning, I saw the kids off to school and then, with trepidation, I put on my running shoes. I was supposed to do a 5K tempo run, and I really didn’t know if I had it in me. I needn’t have worried: I had a fabulous run. I did 5K in just under 30 minutes, and I felt great.

Thursday was another rest day, but not an intentional one. I had some errands to run, and I met a friend for lunch, and time just ran away from me. I didn’t mind. I hadn’t seen my friend for a year, and it was great to catch up. As much as I love running, sometimes other things are more important.

Today – Friday – was an odd day. I was scheduled for an easy 5K run followed by a weights workout, but I spent most of the day helping to set up for a local ribfest that’s happening this weekend. I was on my feet, walking a great deal, carrying heavy things. By the time I got to the gym late this afternoon, I was quite tired. I got onto the treadmill and set the speed to a brisk pace – definitely too fast to qualify as an “easy” run. By the time I had run 4K, I was done. I felt that if I tried to continue, I would end up on one of those YouTube videos featuring people falling off treadmills. I didn’t feel too bad about docking a kilometre from my run, because I covered several kilometres walking around at the ribfest this morning.

After I stepped off the treadmill, I headed to the weights area, and actually got in a full strength training session. When I was finished, my muscles were quivering. I feel that I have earned tomorrow’s rest day, and on Sunday I will be ready to tackle 18K.

My mileage this week was lower than I would have liked, and I only got in one strength training session instead of two, but I feel that the week was moderately successful. On days when it would have been easier to make excuses and not do anything, I found ways to get in some miles. I feel good about that.

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

Filed Under: Planning, running, schedule, Training Tagged With: , , , , , , , , ,
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Body for Life: Starting the Adventure

November 6, 2012 By

Quite a few years ago, on the suggestion of my friend Adam, I entered something called the Body for Life Challenge. Adam, who was my chiropractor at the time, was entering the challenge himself, and he formed a little group of people who would take part and offer support and encouragement to each other along the way.

Body for Life is an exercise and nutrition program that promises spectacular results if you follow the guidelines. The guidelines are quite simple. The nutrition aspect involves balancing carbs with proteins, and it follows the now-accepted protocol of six small meals throughout the day instead of one large one. The exercise aspect involves daily workouts, alternating cardio activity with strength training. You follow the Body for Life program for six days a week, and on the seventh you are free to eat whatever you like and sit in front of the TV all day.

I stuck with the program for about nine of the twelve weeks, and during that time I had phenomenal results. Excess weight melted off me, and for a while, my flabs actually turned to abs. Unfortunately, I was thrown off-track by a serious injury to my left (dominant) hand that required stitches, cortisone shots, and all kinds of other ugliness. Back then, I did not have what it took to get back into the saddle after a setback. I was completely derailed.

Although I gained back some of the lost weight after that, it wasn’t all a complete waste. Being on the program taught me some basics about nutrition and exercise that have stayed with me to this day, and of the fifty or so pounds that I lost, I gained back about fifteen. So as a program with long-term effectiveness, it’s pretty good.

I have been feeling a little iffy about my body of late. I run long distances and exercise several times a week. My eating is less than ideal but certainly not disastrous. And yet, I still struggle with my weight. I continue to fight with belly fat gained during my pregnancies seven and nine years ago. I have bat wings. My thighs wobble. My oversized boobs get shredded to bits on long runs, in spite of a good sports bra.

I hate to think what I would look like if I didn’t exercise. I mean, what does a girl have to do to be a normal weight around here?

In the wake of my decision to run a marathon three years from now, I have decided that I am going to reinvent my body. I will never be reed-thin or fit into a B-cup, and perhaps I will always have a little jiggle in my belly to remind me of the lives I had the honour of growing. But there is weight for me to lose. There are things I can do to lose fat, increase muscle mass, and be leaner and stronger.

Over the years, I have tried a number of different eating plans. I have sought the advice of a life coach and a dietician. I have attempted this thing and that thing. But none of it has worked, and it has been very frustrating. For someone with body image issues and a history of eating disorders, this is not healthy.

And so it makes sense to me to go back to the only program that yielded results, the only program I was able to sustain for any length of time. Yesterday, I started the Body for Life challenge again. I have recorded my weight and measurements, and I have had my “before” pictures taken.

This time, it will be even better than before. Because now, I know I will have the strength to pick myself up after any setbacks that may come my way. And when the twelve weeks are over, the healthy habits that I gain will stay with me.

I am not publishing my initial weight and measurements, but I will report back every week to tell you what I’ve (hopefully) lost, along with pictures that show progress. Hopefully they will look better than this:

 

 

 

 

 

 

 

If you really want to see my flabby bits in all their glory, you can click on the pictures for full-size versions

Photo credit: Kirsten Doyle’s long-suffering husband

 

Filed Under: Body for Life, Exercise, National Health Blog Post Month, Nutrition, WEGO Health Tagged With: , , , , , ,
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Letting Go Of The Training Wheels

January 10, 2011 By

In September, my son George will be making the transition to full-time school.  For two years, he was going to school one day a week (he is in the “mild intellectual disability” program at the public school), and for the other four days he was going to the therapy centre to undergo IBI.  For those not familiar with the term, IBI stands for Intensive Behavioural Intervention.  It is intense, one-on-one therapy based on prompting and rewards.  It can be used to teach social skills, daily living skills, routine, pattern recognition, and many other things.

Under IBI, George’s progress was off the charts.  He did so well in the first year alone that he made 23 months’ worth of gains in a twelve-month period.  The second year saw similar improvements, and the tiny spark of hope that had been present in me and my fiance bloomed into this kaleidoscope of possibility.  George can be held up as a shining example of what many kids can achieve in IBI.

After two years, though, it was time to move him to a new level.  The one area where George was not making significant improvements was in his social interaction skills, and IBI, by its nature, does not address this deficit very well.  IBI is one-on-one, and George needed to be in a placement that would involve group interaction.  He was also having trouble following school routines.

He was placed in his current program, which is called School Stream.  He spends every morning at the same therapy centre where he received IBI, in a simulated classroom setting with four other kids.  There is a teacher, and each kid also has his own one-on-one support person. The kids do school-type activities, like raising their hand to answer questions, participating in circle time, taking turns, and playing interactively in the gym.  At lunchtime, the school bus picks the kids up and takes them to their respective schools, where they spend each afternoon.

It’s a great program.  The School Stream in the morning and actual school in the afternoon are complimentary programs that reinforce each other and allow for a crucial element: the transferrence of skills to different settings.  We are seeing George progress in different ways.  His teacher at school has reported that he is now following school routines with very little problem, and everyone involved with him is seeing a big increase in speech.

The kid’s probably never going to be big conversationalist, but he is at least functionally verbal, and for George that is a step that is big gigantic equivalent to man walking on the moon.  Academically, he is performing so well that his teacher is now describing him as high-functioning.

There are still challenges, and there probably always will be.  George has a resistance to change that is problematic. Picture extreme tearful anxiety when a lightbulb burns out or when the coffee machine is three inches to the left of where it should be.  There are various meltdowns and anxieties that do not make sense (to us; they probably make perfect sense to George).  We would still like to see him talking more, interacting more, coping with sibling rivalry in a way that does not involve him headbutting his little brother.

But as hard as the challenges can be, they are overshadowed by all of the phenomenal accomplishments that we have seen in George, thanks first to IBI, and then to School Stream.

George will be exiting School Stream in August, and from September, he will be spending all of his school time in actual school, and our three-year involvement with the therapy centre will end.

This is causing me a great deal of anxiety.

It’s not that I think George is not ready.  It’s that think I’m not ready.

The therapy centre represents an avenue of support that has been a part of my life for three years.  I have had many, many conversations with the therapists and supervisors there, and they have given me so many great ideas and strategies for dealing with various things.  They have arranged parent education evenings that have given me valuable information and new ways of looking at things.  And to be fair, they don’t just discharge their kids and then forget about them.  They do have a support program that lasts for six months after the transition to full-time school.

But still.  This change, while being necessary and timely, represents a letting go of support.  It’s like finding yourself without training wheels when you still feel unsteady on the bike.

And this Mama just ain’t ready for that.

Filed Under: autism, postaday2011, School, Teacher Tagged With: , , , , , , , ,