Tag Archives: parental anxiety

23 Months In One Year

20 Apr

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)

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The Wheels On The Bus Go… WHERE?

14 Apr

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)