post

Child, Paper, Scissors

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)

post

No More Teachers, No More Books!

George doesn’t want to go to school.

Big deal, I hear you say. He is, after all, an eight-year-old kid, and if I got a dollar for every eight-year-old kid who didn’t want to go to school, I’d be signing up to be the next space tourist.

His reluctance to go to school has escalated, though. It started mildly enough about five weeks ago. I was getting him ready for bed one evening when he said, “School is closed.”

“No,” I said. “School is open.”

He went to school without resistance the following day, but this became a nightly ritual. Each evening, the frequency of “School is closed” statements would increase, but as far as I could tell, there was no anxiety associated with it.

Then March break happened and everything changed. Over the course of the week-long break from school, both of the kids were sick. James recovered fairly quickly, but George had a bad cough that lingered, so I got him some natural-remedy cough syrup.

And what has cough syrup got to do with this story? Well, George hates taking cough syrup. In order to give it to him, I have to wrap him up in a blanket and give it to him with a syringe, a tiny bit at a time so he doesn’t spit the whole lot out at me. So when he reached for the cough syrup on Monday morning, indicating that he wanted that rather than school, we knew that this school aversion was serious business.

The following morning it got worse. George woke up very early and for over two hours, he constantly said, “School is closed. No school. School uh-uh.” All the time, his anxiety level was steadily rising. The pinnacle of all of this was George going into the bathroom and trying to force himself to throw up.

Despite all of this, when the school bus arrived, he got onto it without resistance, albeit looking absolutely miserable.

I sent an email to the school describing George’s behaviour and asking if anything was going on at school that I needed to know about. I didn’t think so: this is George’s third year with the same teacher, and she’s been absolutely fantastic for him. But there is, in all likelihood, something behind this and I needed to either rule out or confirm problems at the school.

Because she is so awesome, George’s teacher called me back within an hour of me sending the email. She reassured me that everything was fine, and that she would not have known that George was having a problem if I had not gotten in touch with the school.

Then she said something that was so obvious that I felt stupid for not having thought of it immediately. She said, “Did this start after you returned from your trip?”

Of course! I had been to South Africa for two weeks by myself, leaving husband and kids to hold the fort at home. The last time I had been to South Africa, when my dad died, George was 15 months old and James wasn’t even a gleam in my eye. My absence was a highly unusual state of being for both of the kids, and George, with his autism, must have had a very difficult time processing it.

And within a few days of my return, he started his nightly “School is closed” routine.  The idea that he is working through some separation anxiety makes perfect sense. The break in routine resulting from March break would have exacerbated the problem.

On the one hand, I am relieved to know that everything at school is fine. But on the other hand, I feel guilty about having been away, even though my presence in South Africa was so badly needed at that time.

I can only hope that with a bit more time and many more hugs, George will feel reassured. And if I ever have to go away unexpectedly again, I hope he will know that I am coming back.

post

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.

post

10 IEP Survival Tips For Parents Of Children With Autism

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.

post

The Angst Of Back-To-School Shopping

I’m a last-minute shopping kind of girl. Despite my annual promises to the contrary, I am still running around doing Christmas shopping at noon on Christmas Eve. While my husband greets family members as they arrive for our annual Christmas Eve dinner, I am upstairs frantically wrapping presents.

When it’s back-to-school time, I put myself through a variation of the same thing. It would make far too much sense to get the necessary shopping done early in the summer, when the stores are less crowded and the people are less manic. But instead, there I am, the day before Labour Day, scrambling to get shoes and backpacks for the kids. The only reason I don’t do my shopping on Labour Day itself is that nothing is open.

You’d think I’d know better. You’d think that I, special needs Mom, would take reasonable endeavours not to expose my autistic son to last-minute crowds of frenzied children and their equally frenzied parents.

But no. Try as I might, I just cannot seem to get myself into the stores until I absolutely have to. Either I have some kind of illness or I thrive on the pressure of last-minute shopping.

It therefore comes as no surprise that I found myself and my two boys in a shoe store on Sunday afternoon, along with every other family in the Greater Toronto Area. The kids’ feet were measured without incident, and then we started browsing the aisles for shoes that would fit them.

I started with George, just because the display of shoes his size happened to be right where we were standing. Initially, I had trouble distracting him from the girls’ display, where he had seen shoes with castles on them. Once I got him looking in the right direction, he picked out a pair of shoes that he wanted to try on. He put them on, and then, in a moment of verbal clarity that was utterly astonishing, he said, “The shoes are too small.”

While internally celebrating the fact that he had clearly verbalized a problem instead of simply melting down, I found the same shoes in the next size up. They fit, and George was happy.

While all of this was going on, James was walking down the aisle, removing shoes from their boxes and leaving them on the floor. My stern warning looks morphed into verbal reprimands that gradually increased in intensity and desperation. James’ innocent explanations that he was “just looking” did nothing to dissipate the cloud of dark thunder that was slowly but surely gathering above my head.

I succeeded in getting him to stop and put all of the shoes back in their boxes by threatening to take away his Bumblebee Car. He did, of course, cry and loudly declare me to be a Mean Mommy, but there you go. Sometimes a Mom’s gotta do what a Mom’s gotta do.

James ceased and desisted from crying when I told him it was his turn to pick out shoes. All of a sudden, I was the best mommy ever and he loved me “all the way up to space”. The Plight Of The Bumblebee was forgotten.

As we waded through masses of squiggly kids, I held firmly onto George’s hand. He was not having a meltdown, but he was visibly restless, and I could tell that he was itching to make a dash for it.

James picked out a pair of Lightning McQueen shoes and tried them on. I let go of George for a moment to help James with the Velcro strap, and just like that, George had taken off at the speed of light. Yelling at an assistant to keep an eye on James, I took off after my firstborn, dodging and leaping acrobatically over children. I flew after George into the stockroom as startled assistants looked up from their stockroom tasks. I finally caught up with him at the end of the stockroom. He only knocked down two large piles of shoeboxes. I crouched down and started picking up the shoes, but a kindly man with an Irish accent waved away my efforts and said he would take care of it. I apologized for the extra work we had caused, and he gently said, “Looks like you’re the one with the work, love”. He added that I should go and get myself a lovely cup of tea.

He was a nice, nice man.

Fortunately, James was sitting exactly where I had left him, and the Lightning McQueen shoes met with his approval. We paid for our purchases and left.

Calm gradually returned, and later that night, I took the advice of the kindly Irishman. Except instead of tea, I had wine.

Next year, I will do my back-to-school shopping at the beginning of summer.

(Photo credit: http://www.flickr.com/photos/8136496@N05/3900289380/. This picture has a creative commons attribution license.)

post

Home Ec 101: What Not To Do

This morning I came to the conclusion that I need to learn how to sew.

There are some women who always keep a sewing kit handy, and more importantly, actually know what to do with it. These women have no trouble sewing on a button, turning up a hem, darning a sock, or turning a collar.

I am not one of those women. I don’t even know what “turning a collar” means.

I was educated at a girls-only Catholic school, the kind that believes that girls have to be clones of Martha Stewart in order to find a husband. And so I learned how to knit when I was ten years old, although the term “learned” is a bit of a stretch. Teaching someone like me how to knit is a bit like teaching a giraffe how to fly.

My first project – the one I got at the tender age of ten – was to knit a scarf. While all of the other little girls happily clicked their needles together to create long, tidy scarves, I struggled mightily to get the needles to cooperate, and the wool pulled and strained as I tried to loop it over the needles. Every time I completed a row I had to take a breather.

The other kids completed their scarves and started attaching the tasseled fringes onto the ends. I was still working away with my needles, trying desperately to come up with something that would go around my neck at least once. In the end, one day after school I simply finished the row I was on, and deemed the scarf to be complete. Since I had a scrap of knitted material that would barely wrap around a pencil, let alone a human neck, I resorted to artificial scarf-lengthening means. I soaked my scarf in water to make it wet and hopefully stretchy, and then I took it out to the back yard and secured one end to the ground with a croquet hoop. I pulled on the other end with all my might, and when it was stretched as far as it would go, I went to work with the hammer and a second croquet hoop. Then I went inside, blissfully under the impression that if my scarf were left to dry in that stretched-out state, my problem would be solved.

Pretty resourceful for a ten-year-old.

By the time I checked on my scarf a couple of hours later, it had indeed dried. It looked impressively long. I removed the croquet hoops and stared in disbelief as, like a strange alien creature undergoing a metamorphosis, the scarf writhed and contracted back to its original size. So much for my resourcefulness.

I would rather have set my face on fire than actually started knitting again, so I decided that the length in the scarf would just have to come from the tassels. I can honestly say that when I handed the scarf in for marking, the surreally long tassels completely took focus away from the quality – or lack thereof – of the knitting.

We will not discuss the next craft project: a knitted Humpty Dumpty. Mine was definitely a Dumpty.

Nor will we discuss the apron I made in seventh grade, that the home ec teacher awarded me a grade of 12% for.

We will just skip right ahead to this morning’s fiasco…

At Christmas, one of my gifts from my husband was a lovely light gray suit consisting of pants and a jacket. Although it fitted, it was just too snug to be comfortable. I mean, I don’t want to be sitting on the subway wondering if my pants are about to split open at the seam. So I hung the suit in my closet and resolved to wear it when I had lost a few pounds.

Thanks to the more-or-less liquid diet that I have been forced to follow of late, that day came today. I took the suit out and put it on to find it comfortably loose while still being stylishly fitted.

Just one problem – the pants were too long. I couldn’t wear them like that, because I would have dirtied the bottoms of the pant legs, and I probably would have tripped and fallen on my face in the process.

I couldn’t take them up, because – well, I just don’t do sewing. But that resourceful ten-year-old in me has never gone away, so I came up with a solution that any resourceful ten-year-old would think of.

I decided to staple the bottoms of my pants.

With my five-year-old quizzically looking on, I carefully measured out the length that looked right, and then went to work with the stapler.

At first, I couldn’t get the stapler to work properly, and I figured that I would probably have more success if I wasn’t actually wearing the pants while I stapled them. I took them off, laid them flat on the ground, and tried again. Ten minutes later, I put the pants back on, and went to the full-length mirror in the hall to survey my handiwork.

The fact that one leg was now an inch shorter than the other was the least of my problems. One of the staples wasn’t holding properly, so one side of the pant leg was drooping down sadly. On the other leg, the staple had bunched up the fabric in an intriguing manner. And my assumption that the staples wouldn’t show against the gray fabric turned out to be hopelessly misguided.

With resignation, I gave up on the gray suit. I took it off in a huff, and then stomped off to put on my blue pinstriped suit instead, a suit that was ready-to-wear and staple-free.

Now, with the benefit of several hours of hindsight, I can think of the utter ridiculousness of trying to staple pants and I can laugh about it.

But I really should learn how to sew. And giraffes should learn how to fly.

(Photo credit: http://www.flickr.com/photos/stevendepolo/4312354135. This photo has a creative commons attribution license.)

post

Autism And Adolescence: Preparing For The Storm

I was educated in the 80’s at a girls-only Catholic school that was run by nuns. The school was high on academic excellence, and a high percentage of its graduates went on to achieve some pretty impressive things. At the same time, though, the school fell flat where it came to life skills training, and many of those people who wound up in noteworthy careers also struggled in various areas of their personal lives.

Throughout high school, I frequently found myself being summonsed to the principal’s office. The principal was a mean old nun named Sister Elizabeth, and she hated me simply because I was not a clone of my cousin, who she had taught at a different school several years previously. Every visit to her office was the same, regardless of what alleged infraction had sent me there. First, Sister Elizabeth would ask me why I couldn’t be like my cousin, and then she would put on a grave face and say, “Whether you throw a teaspoonful of mud or a bucketful of mud, you’re still throwing mud.”

What the hell was that supposed to mean?

I mean, I was the shy, socially awkward kid in my peer group. I wasn’t exactly a trouble-maker, and when I did hit a difficult patch in eleventh grade, my troubles were directed towards myself, and barely caused a ripple beyond my immediate group of peers. I was never caught smoking under the bleachers, I never swore at a teacher, and I never had a pack of condoms fall out of my pocket while running down the hall. Interestingly enough, the person who all of this did happen to was never, to my knowledge, sent to see the dreaded Sister Elizabeth.

What the school laughably called “sex education” happened in the form of a couple of talks given to us by outside counselors when I was somewhere around tenth grade. The talks had the following central theme: if you have sex before marriage, you will undoubtedly go through teen pregnancy and a life of poverty and deprivation, and your child will be a juvenile delinquent addicted to drugs, and when you die you will go to hell.

We were given some very basic information about the different forms of contraception, and then told not to use any of them on the grounds that they were a sin. The only acceptable forms of birth control, we were told, were abstinence and the Rhythm Method (which, of course, was reserved strictly for marriage, because of the whole going-to-hell thing associated with sex).

In retrospect, the timing and the subject matter of these sex education talks was kind of funny. By the time we had to listen to them, most of my peers had been sexually active for at least a year and probably knew more about contraception than the people delivering the talks. To my knowledge, there was only one teen pregnancy in my peer group, and it happened after we had all graduated high school.

Things today are very different. Kids are maturing physically at a younger age than my generation did, and for the most part, society seems to have let go of the notion that teens just shouldn’t have sex. There is an acceptance that they are going to do it anyway, so we may as well equip them with the tools and knowledge to do it safely. I am all for that, although I certainly wouldn’t want my boys to be experimenting with sex until they have reached  a certain level of emotional maturity.

The question that is plaguing me is this: how do I deal with this topic where my son with autism is concerned? He may only be turning eight in September, but time flies, and before we know it he will be entering the world of pre-adolescence. His physical maturation will far outpace his social development, and I worry about the time when he will have physical drives that he will not be emotionally equipped to deal with.

And so I have decided to start seeking out resources and advice on this topic now.

That way, when the storm of adolescence hits, I may have a fighting chance of helping my son navigate his way through it all.

(Photo credit: http://www.flickr.com/photos/alamosbasement/3661120171)

post

Graduation Day

My Kindergarten Graduate

On Friday morning we all woke up with a sense of occasion. Especially James, my five-year-old son for whom this day was happening. He had been looking forward to it all week, and now that it was here, he could barely contain himself.

In honour of the occasion, I walked him to school myself instead of dropping him off at the daycare. Once we got to the school, he ran ahead of me to join his peers, and I joined the group of parents walking towards the gymnasium where the event of the day was being held. I secured two seats in the front row, and hoped that my husband, who was taking George to school, would arrive before the excitement started.

As I waited, there was a lot of scuffling and whispering and shhhh-ing coming from behind the curtain on the stage, as the kids were obviously brought in through an unseen entrance and put into their positions. With just moments to spare, Gerard scooted in and sat beside me.

And then it began…

The curtain opened to reveal a sight that made the audience go Awwwwwwwww in unison: a class of graduating Kindergartners, all wearing oversized white mens’ shirts that had been put on backwards, and personalized graduation hats made of construction paper.

I have to tell you, they looked cute. Especially when music was cued and the kids started singing a song to the tune of Frank Sinatra’s New York, New York (instead of singing about New York, New York the kids were singing about Grade One, Grade One).  And the cuteness just about exploded near the end of the song when the kids started doing that leg-kicky dance routine. They were very enthusiastic about it, too.

The music segued into I Gotta Feeling by Black Eyed Peas. This time the kids weren’t singing, but they were dancing. Even though it was supposed to be a choreographed dance, it somehow didn’t matter that at no point during the song did any of the kids have matching dance moves. Their energy and enthusiasm – and the fact that my child was part of it – made it the best dance I’ve ever seen.

When the music faded out, it was time for the big moment. The children were called one by one to receive their Kindergarten certificates, which were rolled up into little scrolls and tied with ribbons. When it was James’ turn, he solemnly received his certificate and then posed for the pictures as if it was an occasion in the White House. He had taken this graduation concept very seriously all week, even telling me at one point that “graduation is no laughing matter”.

So far, I was doing OK. I hadn’t cried yet. I hadn’t even needed to reach into my bag for a tissue.

The kids were brought down from the stage and they were ushered to pre-assigned seats in the auditorium. A projector screen appeared from nowhere on the stage, and in a slightly alarming move, one of the teachers started handing out Kleenexes to the assembled parents. “You might need these,” we were told.

The lights were dimmed and the show began…

It was a photo montage of the kids’ school year, and it was absolutely beautiful. The pictures of James showed a kid who was happy, social, and doing really well. My heart burst with pride.

Yes, I cried. So did all of the other parents. The person who was probably crying the hardest at the end of it, though, was the teacher. She clearly cares about every child she teaches. And that shows in how well the kids have done, and in how excited they are to be in Grade One.

The day could not have been more perfect. So what if the singing wasn’t exactly in tune? And so what if the kids chose, on the day, to dance to the choreography inside their own heads? We, the parents, had the privilege of seeing our kids being the wonderful, spontaneous human beings they are.

We saw them being themselves, and it was the best thing ever.

post

The Wheels On The Bus Go… WHERE?

The start of the next school year in September is going to be a big time for our family, as both boys make the leap to full-time school. In August, George is being discharged from the therapy centre where he currently spends his mornings, and James will be graduating from half-day Kindergarten and going into First Grade. It is a big adjustment for both boys, and although I expect some fallout, particularly from George, I am not too concerned. I have faith in both of the boys’ schools.

It’s the school buses I’m worried about.

For James, this isn’t an issue. We live too close to his school for buses to be in the picture for him (much to his disappointment; James would love to ride in a school bus like his big brother).

George, on the other hand, needs the bus, and four years’ worth of problems in the school bus system have taught us a very unfortunate fact: when it comes to scheduling school bus runs, special needs children are treated as an afterthought. The children who do not have any disabilities – in other words, the ones who as a rule are more adaptable and resilient – have their scheduling sorted out very early on in the school year. And the children who do have disabilities – the ones who are vulnerable, have higher levels of anxiety and more reliance on routines – easily spend six weeks or more being picked up at different times, by different drivers, and spending inordinately long periods of time on the bus, while their parents try to figure out what is going on.

Like most parents of young children, I want to know where my kids are at all times. I want to be able to know that at this time, George is on the bus, or at that time, James is eating lunch at the daycare. I do not want to be wondering whether or not George is still at the therapy centre and why the school is calling me to ask why he hasn’t shown up yet.

Last year, right after the Thanksgiving weekend, there was an incident with George’s bus that, while turning out OK, could have had terrible consequences. At that point, we had struggled with the bus company for almost two months getting George’s schedule worked out, and we thought that it had finally been resolved. George was being picked up at a consistent time from the therapy centre by a driver he knew from the previous year, and he was spending half an hour at most on the bus before being dropped off at school for the afternoon.

On the first day back after the Thanksgiving weekend, George was picked up at the usual time by the usual bus driver. He was driven to school.

The only problem was this: it was the wrong school.

Thank goodness George had on a seatbelt lock, which prevented him from getting up, walking off the bus, and getting lost or worse. Thanks to the seatbelt lock, someone had to actually get onto the bus to remove the seatbelt.

The teacher who took George off the bus didn’t know what was going on. She took the driver’s word that George was supposed to be there. It was only when the driver had left and George was standing in the principal’s office with a confused babble of grown-ups surrounding him that someone realized that a mistake had been made.

For a regular kid this would have been bad enough. For a child with autism who is afraid of people and places he doesn’t know, and who has severe communication impairments, it was downright traumatic.

Somehow the principal figured out who George was, and through a series of phonecalls, was able to figure out where he was supposed to be. A child’s booster seat was dug up from somewhere, and the principal bundled George into his car and drove him to the right school.

It only then, when George had arrived at his own school, that someone thought of calling me and Gerard to tell us what had happened. Up until that point, we had been completely oblivious to all of this.

While we were unbelievably grateful to have our child home safe and sound at the end of that day, we were haunted by thoughts of “what if”. The thoughts of “what if this happens again” prompted us to spend the next few weeks trying to figure out what the hell had happened.

We never did receive satisfactory answers. We do know that the bus driver was not at fault, that she was given the wrong information from higher up. We also know that in said higher-up’s attempt to avoid responsibility, the bus driver was relieved of her duties. There were no attempts made to figure out what had gone wrong so that steps could be taken to prevent it from happening again.

And in a few short months, we are going to have to fight a new battle for a new school year.

(Photo credit: http://www.flickr.com/photos/alextakesphotos/149198520)

post

The T-Word: A Scary Word For Autism Parents

This morning heralded the beginning of a new phase in my life as a special needs parent. We met for the first time with George’s transition planning team to sign the paperwork that kicks off the process of transitioning him to full-time school.

Any parent of a child with autism will tell you the same thing: that the word “transition” is one of the scariest words in the English language.

“Transition” means that the routines that pretty much hold the world together for a child with autism are about to be turned upside down and inside out.

“Transition” means that there are likely to be meltdowns, that for a period of time my child’s anxiety will be mirrored in his eyes in a way that will make me want to weep, and that the entire family will be without sleep as George makes the adjustment to his new reality.

Despite the fact that this is a process that makes me fraught with anxiety, it is a positive thing. When he started IBI therapy two and a half years ago, George did not have a lot of skills. He had virtually no vocabulary, no self-help skills, he couldn’t follow directions, he couldn’t interact, his emotional regulation skills were nowhere, and he had all kinds of fears that made his life very difficult. There was always a spark in him, though; a light in his eyes that made people sit up and take notice.

After two years of full-time therapy, the progress in this child was off the charts. It would be a stretch to describe him as fully verbal, but he was making requests using full sentences, he was starting to interact in a limited way, he was no longer afraid of the dark, he was starting to verbally express emotion, he was able to follow instructions with multiple steps, and in a giant cognitive leap, he had started to display his quirky sense of humour (deliberately being funny for the purpose of making other people laugh is huge. HUGE!)

And so, six months ago, the decision was made to cut his therapy in half and graduate him to the next program up. Instead of traditional IBI therapy, which is intensive one-on-one programming, he is now in a School Stream program, which is conducted in groups of five. It is a simulated classroom environment, designed to help children with autism learn the kinds of skills needed in school. There is  teacher who leads school-type activities, and each child has his or her individual support person to help with prompting and reinforcing.  The children in this program attend School Stream for half of the day, and actual school for the other half.

It has proven to be a very effective program for George. It has helped improve his social communication and interaction skills – areas that remain difficult for him, that traditional IBI therapy is not designed to address.

And now, effective from September of this year, George is being deemed fit for full-time school. This is a testament to the progress he has made, both in IBI and in School Stream. His teacher at school, who has had him half-days for the last six months, is excited to take him on full-time, and he will be with her for at least two years. At our last meeting with her, she had glowing things to say about George. He still struggles intensely with social communication, and he is not nearly verbal enough to hold his own in a conversation, but academically he is flying. He has developed the skills to function, and function reasonably well, in a classroom setting, even if it is a modified classroom designed for children like George.

That George is ready for this transition is a positive thing indeed. It is something that makes me so proud of him. He has had to work so incredibly hard to get to this point.

But still.

The process of transition is not going to be easy, which is why the planning starts six months before the transition takes place, and does not end until six months after the transition has happened. This morning’s meeting with the transition planning team was the first of what will be many. From what we’ve been able to tell, there will be good supports in place for George and for us over the next year, in order to ensure as smooth a transition as possible.

I cannot help being anxious about it, though. George’s departure from the therapy centre will mean the removal of a layer of support that we have had for the last three years, and although George might be ready for it, I don’t know if I am.

I might just have a harder time with this transition than George will…

(Photo credit: http://www.flickr.com/photos/misskprimary/1038145678)