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Child, Paper, Scissors

25 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 25 – Third person post: Write about a memory you have but describe it using the third person. Use as many sensory images (sights, sounds, textures, etc) as you can. Don’t use “I” or “me” unless you include dialogue.

The little girl struggled with her craft project and prayed for the bell to ring. Unlike her classmates, who were happily making creations out of coloured construction paper and bits of glitter, she didn’t really know what she was supposed to do. She didn’t want to ask Miss H, the teacher, for help. Miss H hated her and would only yell at her.

Sighing inwardly, she picked up her scissors and tried to cut a triangle out of a piece of bright yellow construction paper. But the scissors were too blunt – made that way for the safety of ten-year-olds like herself – and they were hard for people like her to use. Sometimes it was hard being a left-handed person in a right-handed world.

The little girl found herself close to tears as she tried to get the scissors to comply. She had a hard enough time at school. She had “learning disabilities”. She didn’t know exactly what that meant, but she did know that she had to work really, really hard just to keep up with her classmates.

Sensing someone standing behind her, the little girl looked up and saw Miss H regarding her sternly. She started to quiver. She was afraid of Miss H. She almost cried with relief when the bell rang, signalling the end of the school day. But when she started to gather up her things, Miss H pinned her to her seat with a glare and said, “You’re not going anywhere until you cut that piece of paper properly.”

The little girl watched helplessly as her classmates filed out of the room. I can do this, she thought. It’s only scissors. I’ll cut this paper and then I’ll be allowed to leave.

Under Miss H’s hostile gaze, the little girl picked up the scissors with her left hand and prepared to cut.

“The scissors go in your other hand!” barked Miss H.

“But I’m left-handed,” said the little girl timidly.

“Not in my class! Now pick up those scissors – in your right hand – and cut!

The little girl tentatively held the scissors in her right hand. She tried to cut but the paper just bunched up awkwardly. The little girl looked up imploringly.

“My mom is waiting for me,” she whispered.

“She’s just going to have to wait! You’re not going until you get this right! Are you so stupid that you can’t cut a simple piece of paper?”

The little girl tried again, but this time she was shaking so badly that she accidentally ripped the paper. Miss H whipped the paper away and slapped a fresh sheet down on the desk.

“Do it!” she snapped.

As the little girl tried desperately to use the hand she was not designed to use, the pile of discarded paper grew. Fat tears started rolling down her face and plopping onto the paper.

All of a sudden a new voice pierced the terrible atmosphere: the little girl’s mother had come looking for her and was witnessing the events with horror.

“Miss H!What is going on?” asked the girl’s mother, furiously.

Miss H, caught off-guard by a mother protecting her young, said something incoherent about acting in the best interests of the child.

The little girl’s mother lowered her voice menacingly and said, “Now, you listen to me. My daughter has a learning disability that you are well aware of. And you have just destroyed five years of confidence-building work in fifteen minutes. I hope you’re happy!”

With that, the mother swept up her little girl and whisked her away to safety.

She took her home and immediately started the process of building up her broken child.

(Photo credit: Kirsten Doyle)

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10 IEP Survival Tips For Parents Of Children With Autism

25 Oct

If you want an autism parent to break out in an instant sweat, just mention the initials IEP. The Individual Education Plan, which is theoretically in place to help children with autism and their families, can instead be one of the biggest sources of frustration. The IEP process, during which the child’s educational goals for the upcoming year are formulated, is about as much fun as a root canal. It is also just as essential. Without an IEP, our special needs kids would be eaten alive by a school system designed to teach “typical” kids who can do “typical” things.

Putting together an effective IEP requires collaboration between the parents and the school, and differing viewpoints can lead to difficulty. The school views the child as one of a number of students requiring IEP’s. They want to get the job done as quickly and efficiently as they can: the less interaction they have to have with parents, the better. From my experience, teachers like to draw up the IEP, send it home for parental signatures, and be done with it.  Parents, of course, view their child as a unique individual. They want their child’s IEP to be given care and consideration. They don’t want a cookie-cutter IEP; they want a plan that reflects their child’s needs. After all, the “I” in IEP stands for “Individual”.

It doesn’t have to this frustrating. There are things parents can do to derive real value from the IEP process. Today I want to share with you some tips that I have learned over the years, both from my own experiences, and from other people who have been through the IEP wringer. If you have tips of your own, please feel free to add them in the comments section.

  1. Parents, educate yourselves. Find out the special ed laws in your area. Make sure you know what you as a parent are entitled to request on behalf of your child. Do research on the IEP process. If possible, try to get your hands on the IEP form if you haven’t already seen it. If you know what information the form calls for, you can be better prepared.
  2. This is not a battle – or at least, it shouldn’t be. No matter how frustrated you are, avoid approaching your child’s teacher in a confrontational manner. You are not on opposite sides of the table. You are members of the same team, working together for the benefit of your child. If you adopt a collaborative attitude, chances are that the teacher will do the same. At the end of the day, your child will derive a lot more benefit from a cohesive team than from a roomful of bickering people.
  3. There is another reason to play nice with your child’s teacher. The special ed community is fairly contained. There is a good possibility that the professional you are dealing with today will crop up in some other role in the special ed world at some point in the future. I’m not suggesting that you give in to what the teacher wants. I’m just saying, be nice. Treat all of the professionals you encounter with respect. Yelling at an uncooperative teacher may get you some short-term results, but it will also burn a bridge that you may need further down the line.
  4. Be realistic. Your child’s goals should be formulated with reference to where they are today. A child who has not yet learned how to count to twenty is probably not going to be able to add triple-digit numbers.
  5. Instead of requesting goals in absolute terms (“I want my child to be reading by the end of the year”), phrase them as an ongoing process (“The ability to read one- and two-syllable words, with a view to reading simple story-books.”)
  6. Remember that kids don’t necessarily do the same things at school that they do at home. My son’s teacher, who is with him for the third year in a row, sent home an IEP draft that included the goal for him to rote-count to 100. I was initially perplexed, because he’s been counting to 100 since he was four, but it came out that this is not a skill he has demonstrated at school. Conversely, he has shown more promise in interactive play at school than he does at home.
  7. Don’t be shy about writing comments on your child’s IEP. The IEP form does not allow a lot of space for comments – feel free to break out a separate sheet of paper, write your comments on that, and staple it to the form.
  8. As a parent, you have the option to meet with the teacher, or to just add your comments to the IEP and sign it. I strongly recommend that you meet with the teacher. Even if it’s the same teacher for the second or third year, the goals will have evolved, and it can be very difficult to keep things in context without a face-to-face meeting.
  9. If the IEP does not include a goal that you feel should be there, be persistent. You may need to compromise on the wording of the goal, but make sure it gets written into the IEP in some form.
  10. Remember that the IEP is not cast in concrete. We don’t have crystal balls, and we cannot always say that the plan we come up with in October will still be valid in, say, February. If a strategy or goal that was written into the IEP is not working, talk to your child’s teacher about modifying it.

Letting Go Of The Training Wheels

10 Jan

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.

Stop the world, I need to breathe!

8 May

To say that the last week has been a bit eventful would be like saying Hitler was a bit aggressive.  It’s either feast or famine in my life.  Things will chug along, same-old-same-old, for weeks at a time, with nothing changing and nothing really newsworthy happening.  Then all of a sudden, I will have several weeks’ worth of events will flock to me like mosquitoes flock to my husband (seriously, bugs love him and for the most part, avoid me.  Why is that?)

Last Sunday I ran a race, the Sporting Life 10K in downtown Toronto.  It was a phenomenal event featuring more than 14,000 runners and superb race organization.  The logistics of planning something that involves that many people must be akin to a nightmare, but these guys pulled it off flawlessly.  The run itself was a lot of fun.  The route was easy, downhill most of the way, and the weather was perfect.  The predicted thundershowers failed to materialize, but the cloud cover and the gentle breeze were in evidence.  I completed the run in 1:05:00 – fast enough for a personal best time for the distance, but still leaving plenty of room for more personal best times in the future.

A quick word about something Gerard did for me before the race.  When he and James dropped me off at the start line, I gave James a kiss, and then went round to the back of the van to pick up my bag.  Only to see that Gerard had propped up a framed picture of my Dad next to my bag.  Dad, who died five years ago, was also a runner – one of the best in South Africa at his prime – and this was Gerard’s way of telling me that Dad was with me.  I was so touched, it brought tears to my eyes.

Several hours after the race, I started feeling a little off.  I figured that I had pushed myself on the run, not eaten soon enough afterwards, and consumed way too much coffee.  Feeling a little sick made complete sense to me.  But then – there’s no polite way to describe this, really – I started tossing my cookies.  Big time, for several hours.  Many hours, in fact.  Until 4:00 the following morning.  Even when there were no cookies left, the cookies continued to be tossed.  It was clear that I had a bug.  I had felt fine for the run – perhaps the bug was lurking there in the corner, just waiting for its moment to arrive.  Although the throwing-up incidents came to an end after about sixteen hours, I felt weak and drained for several days.

On Sunday afternoon, about an hour after I started feeling sick, I heard from Robert, the brother of my friend Tim.  Tim, who had recently been diagnosed with stomach cancer, had passed away.  Tim and I were friends for years.  We wrote columns for the same e-zine, and Tim was my unofficial tech support guy.  When George was diagnosed with autism, Tim was the guy who recognized my need for an outlet; a place to write and vent about autism and what my family was going through.  He gave me a forum to do so, and he was supremely supportive of everything – my parenting, my running, my writing.  He was also one of the funniest people I’ve ever known.

Fast forward to Thursday afternoon.  I was sitting at work, an hour away from going to the Keg with a few of my coworkers to bid farewell to someone who was leaving to go and live in Abu Dhabi.  I had resolved to drink nothing but water at the Keg – I was still feeling mild effects from the weekend stomach bug.  Work was going smoothly enough, when I got a phonecall from George’s therapy centre.  The news was good and bad.  The good news is that they wanted to put George into something called the school stream.  Instead of receiving one-on-one therapy, he would be in a simulated classroom environment with four other children.  The concept sounded good but the timing sounded bad.  When I expressed the opinion that George would not be ready for this by the proposed start date of September, I was told that if he continued with his one-on-one therapy, he would most likely be discharged in December.  Meaning that by January, he would be thrown full-time into a school system that he is nowhere near ready for.  The one day a week of school that he does get is challenging enough.  What this whole conversation left me with is the feeling that I am having to make a critical decision that could make or break George.  It’s like playing Russian Roulette with my child’s future.  What I decided, there and then, was that we had to fight as hard as we needed to to get the best for George.  Thanks to the advice of someone I know who has been through these fights for her own son and knows the system backwards, I was able to tone down some of the anger and gloves-off fighting attitude that I would have gone in with.

I didn’t only drink water at the Keg that afternoon.

On Friday morning, Gerard and I had a meeting at the therapy centre.  We got to see the classroom that is used for the school stream kids, and we were allowed to observe proceedings.  We asked a ton of questions, and got a clearer picture of the program.  In school stream, a teacher works with a group of five children in a mock classroom setting.  Each of the five kids still has a one-on-one support staff member with them, to prompt them as needed.  It’s kind of like a cross between what George is getting now and school.  The whole idea is get kids used to the idea of following school routines, walking in line, participating in class discussion.  In essence, school stream prepares kids for full-time school.  It’s a half-day program; for the other half-day, the kids are in fact in school.  That aspect of the program is simply to get the kids used to being at a real school every day, even if it’s just for a couple of hours.

Here’s what sold us on this program: social communication.  That is George’s single biggest challenge – one that, by its very nature, one-on-one therapy cannot really address.  The school stream program could be hugely beneficial to George from that aspect alone.  The whole thing is based on group interaction and the need to communicate and participate.  The program typically lasts for a year, but if the child needs it for longer, it can be extended.  It includes regular speech therapy, occupational therapy, and social communication workshops.

We said yes.  On seeing the program in action and getting all the facts, it does seem like the right thing to do.  It is the next logical step in this roadmap that is George’s life, and I am excited about the potential it has for him.  He will be continuing with his current program until September, and then switching to school stream in September.

After this was all sorted out, Gerard and I went on to James’ school where there was another occasion for us to attend.  James is a new inductee to the school system, having just started Junior Kindergarten last September.  With a Christmas birthday, he is the youngest and smallest kid in his class.  He needed special nurturing in the beginning, and his teacher, Mr. T., took him under his wing.  James adored his teacher, who was popular with the entire student body: he doubled as the school librarian and frequently gave the kids a break on their late fees.

In December Mr. T., who had recently celebrated his thirtieth birthday, contracted pneumonia and died.  It was a huge shock for everyone; I found myself with the task of explaining the meaning of this to a kid who was still a couple of weeks away from his fourth birthday.  I had to try and make him understand that Mr. T. loved him very much, but was never coming back.  Over the last few months, James has dealt with alternating cycles of grief, denial, and acceptance.

On Friday, he got to say goodbye.  The school put together a memorial assembly, a celebration of life in honour of Mr. T.  James and his classmates sang a song called “It’s a Great Day”, a cheerful song that Mr. T. would have approved of.  My heart swelled with pride and my eyes filled with tears.  There were more songs performed by other classes, quotes, a wonderful slideshow.  I had the honour of meeting Mr. T.’s family – his wonderful parents, brother, and partner.  Will this be effective closure for James?  Only time will tell.

So now I am in a state of exhaustion and very heightened emotion.  I feel overwhelmed and a little stressed.  I know that I just need to give myself time to wind down from all of these happenings.  I am sure tomorrow’s 19km training run will help!