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23 Months In One Year

April 20, 2012 By

April 20 – Miracle cure: Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer.

Try as I might, I was not able to get this prompt to work for me. Therefore, I decided to use one of the bonus prompts that were provided at the beginning of this challenge.

Best doctor’s visit or hospital stay: What made it the best? The news you got? The nurse/doctor/surgeon you saw? The results?

On a cool Spring day in 2010, my husband and I drove George, then six and a half, to an appointment with a psychiatrist. The purpose of the visit was to get the results of the assessment that had been done six weeks previously.

The anxiety we felt went beyond normal parental angst. We were both remembering the assessment that had been done a year previously. It had not gone well. George had been agitated and distracted. He hadn’t settled, refusing even to take his coat off. Throughout the assessment he had underperformed on just about every task. In the next room, I had answered questionnaires, checking the “never” or “rarely” box to almost every question about George’s capabilities.

It had been a dismal experience, and the results had shown severe deficits. Now we were back, one year later, to see what quantifiable effects his first year of IBI therapy had had. He had shown almost no anxiety during the assessment this time, and the specialists had emerged smiling from the room, but we knew that we just had to wait and see the numbers.

When she greeted us, the psychiatrist was as charming and soothing as always. She ushered us into her office and gave George some markers so he could follow his favourite pursuit of scribbling on her white board. He surprised us all by writing lists of words instead.

The psychiatrist could tell that we were nervous, and she was kind enough to dispense with that beat-around-the-bush suspense thing that so many doctors seem to take an inordinate amount of pleasure in. She cut right to the chase.

“George has made phenomenal progress,” she told us.

She showed us reports and charts showing gains in almost every area: cognitive, language, fine motor, gross motor, emotional regulation, behavioural, daily living skills… What this child had achieved in the last year was off the charts.

It was literally off the charts. The psychiatrist showed us a graph showing percentiles of progress after one year of IBI therapy, and sure enough, George’s accomplishments went way beyond the right margin of the page.

In his first year of IBI – in a single twelve-month period – George  had made no less than 23 months worth of gains.

That was phenomenal. Far from following the usual model in which autistics develop relatively slower than typically developing children, thereby falling relatively further behind, George had developed at almost double the usual rate. He was still behind other kids of his age, but he was far less behind than he had been, and in some mathematical areas, he had actually started outperforming typical kids.

It’s like starting far back in the pack at a race and being way, way, way behind the leaders. And then, while the leaders maintain the same pace they started with, you put on a hell of a sprint. You probably won’t cross the finish line first, but instead of being twenty minutes behind the guy who wins, you’re only ten minutes behind.

Before getting these results, we had seen changes in George. Progress like that cannot go unnoticed. But it was wonderful to see it in numbers, to see visual proof of what our boy had achieved.

That day, my husband and I truly started to see possibilities for the future, and we made a promise there and then to help our son reach the stars.

(Photo credit: Kirsten Doyle)

Filed Under: Assessment, autism, Autism Services, Health Activist Writers Month Challenge, IBI, Not Giving Up, Progress, Psychiatrist, WEGO Health Tagged With: , , , , , , ,
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Mother Knows Best

April 17, 2012 By

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 17 – Learned the hard way: What’s a lesson you learned the hard way? Write about it for 15 today.

I first started having doubts about our family doctor when he kept telling us that there was nothing that could be done about my husband’s sciatica. It was a very disappointing thing to hear: although not a life-threatening condition, sciatica had been giving my husband a whole new kind of agony for a couple of years, and now we were hearing that he would have to live with it for the rest of his life.

It seemed improbable.  What about physiotherapy, or if we were really pressed, surgery? What about a simple MRI scan or a referral to a specialist?

But my husband’s family had been seeing this doctor for years, and they seemed to have complete faith in him. My husband was resistant to my suggestions to see another doctor.

A few months later, when I was hugely pregnant, I took my older son to the same doctor for his two-year check-up. All of the vital signs looked good. George was in healthy percentiles for both height and weight and he was not showing any signs of illness.

With the main purpose of the visit accomplished, I said to the doctor, “George isn’t talking.”

Indeed, George wasn’t talking. The only words that he used in a contextually appropriate way were milk, juice and jump. Like all new parents, I had practically memorized the developmental checklists, and I knew that George should be doing far more at this age.

The doctor asked a few questions, and then agreed that George did indeed seem to be delayed in his speech.

“But,” said the doctor, “The range of normal development is so broad, particularly where boys are concerned. I will give you some speech exercises to do with him at home, and we will see where we are in a year’s time.”

Every instinct I had was telling me that the doctor was wrong, that waiting was not the thing to do. I knew, had known on some level since George was an infant, that there was something wrong.

Instead of trusting my instincts, I listened to the doctor. I did the speech exercises with George, hoped against hope that he would simply open his mouth and talk one day, and then felt extremely guilty when he didn’t improve. Had I not done the speech exercises right? If I had spent more time on it would I have seen results?

At George’s three-year check-up I finally got a referral for a developmental assessment. When the autism diagnosis came in, all I could think of was how the doctor had told us to wait, and worse, how I had listened to a man I already had reservations about.

I thought about the year that George had lost because of this. The year of speech therapy and other autism-related interventions.

The guilt just about killed me.

And I swore that I would never, ever go against my “mother’s intuition” again.

(Photo credit: http://www.flickr.com/photos/truthout/3901813960/. This picture has a creative commons attribution license.)

Filed Under: autism, Autism Diagnosis, Autism Services, Doctor, Health Activist Writers Month Challenge, IBI, WEGO Health Tagged With: , , , , , , , ,
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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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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: , , , , , , , ,