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The T-Word: A Scary Word For Autism Parents

April 13, 2011 By

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)

Filed Under: autism, IBI, School, School Stream, Therapy, Transition 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: , , , , , , , ,
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Lost: the sequel

October 14, 2010 By

Two days ago, my vulnerable seven-year-old son who has autism was taken to the wrong school by the bus driver.  Through the miracle of technology, the principal of the wrong school (hereinafter referred to as School A) was able to determine that George was a student of the right school (hereinafter referred to as School B).  School A principal drove George to School B, where he was welcomed with open arms by his teacher.  School B administrator called Gerard to tell him what had happened.  Gerard called me.  Together, we spent a sleepless night thinking of how very badly this situation could have ended.  we had visions running through our minds of kidnapping, assault, and all other kinds of God-awful things.

The following day, we set out to find answers.  Clearly, we needed to know how and why a situation had arisen that could have had potential to severely compromise the safety of our child.

Gerard went to see the principal of School A. He pointed out that since George wears a special seatbelt lock to prevent unsupervised wanderings up and down the aisle, he could not have simply got up and got off the bus.  Who had taken George off the bus and why? The principal explained that although his school did have a new student, that student was not expected until later in the afternoon due to a medical appointment. When the bus had shown up, everyone had been surprised. A teacher had gone out to meet the bus, and the bus driver had told the teacher that George was transferring to School A.  The driver gestured at George and mentioned him by name.  The teacher had no reason to not believe the bus driver – she simply assumed that someone had not passed on some piece of information to someone else.  This is, after all, an administration.  These things happen.

Gerard’s next stop was the therapy centre.  He deliberately timed his arrival to coincide with that of the bus driver, with the intention of getting the bus driver’s side of the story. The bus driver claims that her supervisor had called her late on Friday to tell her that George was being transferred to School A effective from Tuesday (Monday being a stat holiday).  The bus driver, who knows George very well, was surprised enough to verbally confirm, in the same conversation, that George was the child being transferred. In accordance with these instructions, the bus driver drove George to School A on Tuesday, and only discovered the next day that this had been a mistake.

The supervisor is now claiming that she never named George as the child being transferred, that she had named some other child with a completely different-sounding name. The supervisor is removing the bus driver from George’s route, and is quite possibly going to attempt to fire her.

It sounds to me as if this is what happened: The supervisor gave the bus driver the wrong name.  Instead of saying Peter or Simon or whatever the other kid’s name was, she said George. The bus driver followed through on the instruction she was given, not knowing it was incorrect. Thereby unknowingly placing a child with autism in a very vulnerable situation. Now the supervisor is trying to cover up her mistake by blaming the bus driver, and the bus driver could end up without a job because of the supervisor’s mistake.

Is it just me, or is this story disturbing on many, many levels?

Filed Under: Children, School Tagged With: , , , ,
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The wheels on the bus go round and round – or do they?

September 15, 2010 By

My younger son James, who is all of four years old, walks to school because he does not qualify for bussing.  I drop him off at the daycare on my way to work, and one of the daycare staff walks him and a few other kids to the school where they attend Kindergarten, just a couple of blocks away. When they are done with school, they are picked up and walked back to the daycare.  It is an arrangement that works very well.

The fact that James walks to school is a godsend. It means that I only have to deal with the annual frustration of getting the bussing right for one child instead of two.

Ever since George entered the school system three years ago (cripes, has it really been that long?) there has been one issue or another with the bus arrangements.  Don’t get me wrong, I know what a scheduling nightmare it can be.  I am the first to appreciate the chaos that must reign in the bus companies in September of every year. I can imagine how tough it is for the drivers to deal with last-minute route changes and impossibly tight schedules.

But how far is my tolerance supposed to go? Where does one cross the line from being patient and understanding to wanting heads to roll because your child is being shuffled around by the system?

Our bus requirements are a little bit different to those of most families by virtue of the fact that George is picked up from one place before school and dropped off at a different place after school.  Gerard takes him to the therapy centre in the mornings.  A school bus picks him up at lunchtime to take him to school.  Another school bus picks him up from school at the end of the day to bring him home.  The issue is not with the pick-up and drop-off locations, it is a simple matter of timing.

Months ago, before we’d started making bussing arrangements for the new school year, the therapy centre made it clear to us that George’s pick-up time from there had to be no later than 11:45. When the morning kids are dismissed from the therapy centre each day, the afternoon kids come in. The therapy centre does not have the staff to be dealing with both the incoming afternoon kids and the morning kids whose busses haven’t shown up. Like many special ed programs, the therapy centre has a problem with staffing.  They don’t have teachers and therapists wandering the halls with nothing to do.

When I filled in the bus request form, I wrote the requirements on it as clear as day.  In big bold letters, emphasized with yellow highlighter, I wrote that pickup was to be no later than 11:45.  I gave the form the George’s teacher, everyone went away for their summer vacations, and that was the end of it.

Until George’s new bus driver called to tell us he would be picked up each day at 12:05.  Initially we weren’t too bothered by this, and neither was the therapy centre.  September, we thought.  New schedules, the need to transport kids to and from all kinds of places at all kinds of times, logistical nightmare. We notified the bus company that the pick-up time was a problem.  The bus company said it would be fixed within a week.

In the interim, Gerard would have to close down his shop each day to drive to the therapy centre, drop George off at school, and return to work.  Taking an hour out of his day that he really cannot afford right now.  After a few days of this, Gerard called up the bus company to ask them how things were moving along, and he was astonished by the stone wall of resistance that he met.

Not only had the problem not been sorted out, no-one was even trying. No-one wanted to try.  The general message Gerard got, in talking to one person after another, ad nauseum, was that the schedule was what it was and that nothing short of an act of God would change it.  Meanwhile, our son, who has autism and therefore a built-in resistance to changes in routine, is expected to sit idle for anywhere from twenty minutes to half an hour, not knowing what he is expected to do next or who’s coming to get him.

Gerard is nothing is not persistent, so he started phoning his way up the chain within both the bus company and  the school board.  He has been met with a variety of reactions ranging from indifference to arrogance to downright hostility.  At no point has he been anything other than polite and professional, and yet the responses have been baffling.

Through all of Gerard’s discussions and conversations with a number of people (he lost count somewhere after seventeen), a disturbing trend has emerged.  The bus scheduling difficulties had, for the most part, been resolved for the general schoolgoing population by the end of the first week of school.  By stark contrast, the vast majority of special needs kids still don’t have their transportation sorted out.  At the therapy centre that George attends, there are ten children needing transportation between the centre and school.  Of these, two children have correct bussing arrangements in place.  Which means there are eight autistic kids who are still confused about their schedules and anxious because they don’t know what’s coming next or when.  Although I don’t have any statistics, I hear similar stories from other therapy centres.

This whole situation is wrong on so many levels.  For a start, there’s the fact that this should not be a big deal.  We should not be getting this kind of resistance to a simple request that was made correctly in the first place.  But far more importantly, the special needs kids in our society are the ones who experience displacement, anxiety, and confusion. Why are there elements in our society that treat them as an afterthought?

As of this point in time, the problem has still not been resolved.  However, the supervisor (Of the bus company?  The school board?) has admitted that the situation is unacceptable and that it will be sorted out.

On a side note, I am fascinated by the reactions I’ve received from friends and acquaintances I have spoken about this to. One guy told me that all bussing should be done away with because there’s no real need for it.  He started on the age-old story about how, as a kid, he had to walk five miles to school in the snow and five miles back.  Yeah, right.  I’m going to let my son with autism walk to and from school by himself.  Then there was a lady who insisted that this is something I should just “suck up and deal with”, that as a parent it is my responsibility to get George to and from school.  This is not strictly true: it is my parental responsibility to ensure that safe transportation arrangements are made for my child.  As long as those arrangements are in place, the responsibility falls to whoever the arrangements are made with – in this case, the bus company.  It is also my parental responsibility to go to work each day and earn a living so I can feed, clothe, and shelter my children.

Things are not the same now as they were twenty or thirty or fifty years ago.  Back then, parents were fine with their kids walking to school.  There was less high-speed traffic on the roads, there were fewer pedophiles about, and parents could send their kids out of the front door in the mornings with the reasonable expectation that they would see them again at the end of the day.

In the case of younger or special needs children, if there wasn’t a bus available, Mom would be available to walk her offspring to school.  Back then, Moms tended to stay home more and the Dads were the breadwinners.  In most modern-day partnerships, both spouses have to work full-time out of economic necessity.

The argument that “what worked when I was a kid will work now” just doesn’t hold water.

Filed Under: Children, School Tagged With: , ,
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Stop the world, I need to breathe!

May 8, 2010 By

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!

Filed Under: autism, Bereavement, Medical, running, School, Teacher Tagged With: , , , , , , , , ,
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