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.


Autism And The Ontario Teacher Dispute

Going back to school after a two-week vacation is hard, especially for a child with autism whose routines have been completely turned upside-down by unaccustomed time at home, unaccustomed time in a hotel, and the whole Christmas ordeal.

This week has been rough for both of my kids, particularly my firstborn. George reacts to changes in his routine by not sleeping, which means I haven’t had anything remotely approaching a good night’s sleep since before Christmas. Now that the kids are back at school, and familiar rituals and schedules have resumed, the sleep issues are slowly but surely diminishing. Usually it takes a couple of weeks for the status quo to fully return.

This time round, though, there are a couple of wrinkles that are likely to hamper our return to our own odd version of normality. One of the wrinkles is actually a very positive one: for the next few Wednesdays, George will be attending a social skills program after school.

On the one hand, he gets to go to the therapy centre that was his home-away-from-home for three years. It’s a place he knows and loves, and the program is one that he desperately needs.

On the other hand, he has not set foot in the therapy centre since he was discharged 15 months ago. It is no longer a part of his daily life, and going there is a big change for him. As disruptive as that is for now, his participation in the program represents progress, and we are excited to see where this might take him.

The other wrinkle is a little more contentious in nature. For those not living in Ontario, here’s the short version of the story:

Last year the Premier of Ontario introduced legislation that would have the effect of screwing over the teachers. The teachers’ unions got involved and tried to negotiate a better deal. The inevitable happened – things went nowhere fast and the unions recommended a course of protest action for the teachers.

In December, there was a series of one-day walkouts staged by school boards across the province. By then, pre-Christmas stuff had already started to throw the routines off, so this didn’t really bother us. The biggest effect was that James’ Christmas concert had to be rescheduled to a date that was impossible for me (oh, the guilt!).

The one-day walkouts failed to have the desired effect, and now the teachers are not in a legal position to strike. They can, however, stage a one-day protest (although to be honest, I’m not clear about the difference between the two), and this is exactly what they are planning to do tomorrow.

Looking at the issues alone, my sympathies are with the teachers. They are entrusted with the task of shaping futures, and they deserve some respect. My opinion is kind of moot anyway: regardless of who’s right or wrong, the teachers have to do whatever the unions tell them to.

But speaking as a special needs parent, I have to say that I am kind of miffed at this latest development. At a time when I am trying to get George settled into the flow of a routine that’s already different, an unplanned three-day weekend really throws a monkey-wrench into the works.

That there are issues to be resolved is beyond question. I just wish this could be done in a way that does not impact the kids. I can handle the inconvenience of having adjust our family’s schedule to accommodate the kids not going to school for a day. I can live with them missing out on one day of instruction. In the grand scheme of their educations, a single day is not going to make much difference.

What I find hard to swallow, though, is the fact that special needs kids like George are going to endure an extra dose of stress and anxiety because of this.

I’m not sure what the solution is, but I cannot help thinking that there has to be a way to avoid making children bear the brunt of grown-up problems.

(Photo credit: Pylon757. This picture has a creative commons attribution license.)


Bullying: Is There A Solution?

In the wake of Monday’s tragic school shooting in Chardon, Ohio, I find myself wondering why we as a society have so much trouble dealing with the problem of bullying. I asked this question on Facebook on Monday night, and more than one person accused me of blaming the victims.

I want to make it clear: I am not blaming the victims, nor am I condoning these acts of violence. I am merely making the point that in spite of the fact that bullying has been blamed for a number of tragedies over the last fifteen years or so, we have made little progress in addressing it.

It would be unfair for me to say that nothing has happened. I would be willing to bet that there were no formal anti-bullying policies in place when I was in high school. That at least has changed: it took me about fifteen seconds on Google to find my local school board’s policy. This does represent a start, even though the wording of the policy is frustratingly vague. It places the onus on schools to figure out ways in which bullying incidents can be reported and dealt with. When I called my son’s school to find out what their school-specific policy is, I got an expected but highly unsatisfactory answer: It depends on the circumstances. I also got the platitudes that schools think are sufficient for parents: We do not tolerate bullying in our school. We take this issue very seriously. Instigators of bullying are dealt with severely.

That’s all great, but what does it actually mean? We don’t need policies that are there primarily to make parents happy enough to sit down and shut up. We need action plans that are followed through on. Here are a few things that I would like to see in place:

  • Education sessions for parents that will teach them to recognize (a) that their child is being bullied, or (b) that their child is bullying.
  • Anti-bullying education in the curriculum for the kids. Right from the get-go, children need to be taught what their rights are and how they can ensure that they are being respected. They should also learn about what behaviours constitute bullying. While this is more intuitive for most older kids, young children may not recognize the potential harm of certain behaviours.
  • Support for the victims of bullying. They should have a way to report their experiences without fear of reprisal, and they should be assured that action will be taken. The onus should not be on them to “stand up to the bullies”.
  • Support for the instigators of bullying. These kids could have something going on in their lives that’s making them do what they do. They shouldn’t just be suspended from school and given a warning not to do it again. Steps should be taken to find out why they are doing it in the first place and what help can be provided to them.
  • Open lines of communication between students, teachers and parents. Teachers and parents should be working together to ensure the safety and wellbeing of our kids, and our kids have to know that there is someone for them to go to when they need help.

Bullying is not a problem that can be solved by letting the kids sort it out. We cannot tell one person to stop doing something, or another person to retaliate. Bullying is a social problem that can only be solved by everyone involved working together in a constructive way, to do what is best for the kids.