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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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Mother Knows Best

17 Apr

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

April 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.)

Countdown

23 Feb

first halfmarathon medal

Three minutes… Will it begin? Or end?

I shift nervously from foot to foot as I look at the crowd around me. The vibe here is immense. I feel like the collective energy created by these twenty thousand people could lift me up and carry me. I have not slept for a week in anticipation of this day, but that does not matter. Standing here, it is impossible to feel tired.

Two and a half minutes… Will these 13.1 miles make me or break me?

It all started six months ago with an email. A local autism centre was entering a team into this race. Was I interested in joining, to raise funds for autism services? My first reaction was: You must be joking. At the time I was tipping the scales at almost two hundred pounds, which was a lot for a woman whose pre-pregnancy weight had been 130 pounds. I had let myself go to seed following the birth of my younger son. Exercise was a four-letter word to me. I found it impossible to lift myself out of the post-partum depression I was still suffering from for long enough to walk to the mailbox and back. And now these people wanted me to run a race?

Two minutes… Will this race be the fruition of all my efforts? Or will it make me slink back into depression?

I deleted the email, but its contents pulled at a thread in my mind. I was in very bad shape, both mentally and physically. It was clear that I needed some impetus to get myself sorted out. Could this be it? Did I finally have the right reason to get up and do something? Would this venture even be possible?

One and a half minutes… Will I have the strength to go the distance? Or will I give up and not finish the race?

I recovered the email from my Deleted Items folder. If I decided to join the team, I could choose a distance. I ruled out the marathon – it would definitely be too much. I considered the 5 kilometre run, but somehow this did not seem to be enough. If I was actually going to do this, I wanted it to be a real challenge. I’ve never been one for doing things in moderation. Either I don’t do it at all, or I go all out. Abruptly, I checked my thinking. Was I seriously thinking of attempting the half-marathon? Was I crazy?

One minute… Will this endeavour cement my newfound love of running? Or will it make me toss my running shoes into the back of the closet forever?

My thoughts drifted to my older son. My beautiful boy with autism, so loving and full of promise. He could go so far and accomplish so much, but he would need help along the way. He would need services and social supports and programs, all of which cost money. The autism centre was hoping to raise funds to finance exactly the kinds of programs that are needed by kids with autism. I could be doing this for my son.

Thirty seconds… Do we proactively give our kids the best possible chances to overcome their challenges? Or do we just sit back and hope for the best?

Just like that, the thread in my mind – the one that the email had been gently pulling at – unravelled. I knew what I had to do. I pulled out my calendar and looked up a few online training programs. I worked out that in six months, I just about had time to train for a half-marathon. I signed up and got to work. And now here I was at the start line, fifty pounds lighter, and although not exactly fleet of foot, at least capable of running for a couple of hours.

The starter’s siren goes off and the crowd surges forward. As I cross the start line, I put a picture of my son in my head and run from the heart.

(Postscript: I finished that first half-marathon in almost two and a half hours. I remember the lump in my throat as I crossed the finish line and the tears that sprang to my eyes when I received my finisher’s medal. Every step of that race was dedicated to my son. Since then, I have done two more half-marathons for autism, and this year I will be doing it again. In my three autism runs to date, I have raised about $1500 for the Geneva Centre for Autism. My sons – the child with autism and his loving, caring brother – are my inspiration. I would run to the ends of the earth for them.)

For the IndieInk Writing Challenge this week, Shauntelle challenged me with "Write a story that begins "Three minutes. Will it begin? Or end?"" and I challenged Head Ant with "Write a story that includes the following: a dreamcatcher; red high-heeled boots; a broken wine glass."

Autism Diagnosis: Changing The Landscape

13 Jan

For the benefit of people who are not involved with autism, I will start today’s post with a brief primer on what an autism diagnosis actually means. People who are affected by autism and already know this stuff, bear with me.

Most medical conditions are stated in absolute terms, based on whether they are present or not. Think of pneumonia, Downs Syndrome, or meningitis, to name just a few. The severity of symptoms may vary from person to person, but that does not change the diagnosis.

Autism is a spectrum disorder, and where the individual falls on the spectrum can determine his or her diagnosis. One of the more common autism rating scales is called CARS, or Childhood Autism Rating Scale. For diagnostic purposes, anyone who scores over 15 on CARS is regarded to have an autism disorder. The lower numbers – from 15 to about 25 -  will result in a more specific diagnosis of Aspergers – what some call “high functioning autism” (the use of this term is highly contentious). At the other end of the scale, from about 40 to the upper limit of 65, there are people who receive a diagnosis of autism. And in the middle are the people who are diagnosed with something called PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified).

Although people in all three groups are deemed to have ASD (Autism Spectrum Disorder), the specific diagnosis – and therefore the services they receive – will depend on where they fall on the spectrum. It is worth noting that a child may, over the course of his or her life, be diagnosed with all of three things at one point or another. My own son, for instance, was initially diagnosed with autism. His current clinical diagnosis is PDD-NOS.

Primer over. Now I will get to the point of today’s post.

Now, the diagnostic criteria for autism disorders could be changing, and these changes could have some far-reaching effects on the services that are received by individuals who are on the spectrum. Whether the changes would be good or bad is a matter up for debate.

According to the proposed criteria laid out in DSM-V (Diagnostic & Statistical Manual of mental disorders), there will no longer be individual diagnoses of Aspergers, PDD-NOS and autism. Instead, everyone on the spectrum will get a clinical diagnosis of ASD.

This can be good. In the current diagnostic world of DSM-IV, many people on the spectrum do not get the services they need because they are deemed to be “high-functioning”. With a common diagnosis for everyone, the world of services could be opened up to a host of people who have previously not benefited from it.

But.

Let’s take a look at how the actual diagnostic criteria themselves may be changing.

In DSM-IV – the world as we know it today – a total of twelve symptoms are divided into three groups:

  1. Qualitative impairment in social interaction.
  2. Qualitative impairment in communication.
  3. Restricted repetitive and stereotyped patterns of behaviour, interests and activities.

The individual has to display at least six symptoms, with at least two from the first group, and one each from the second and third groups. If this condition is met, along with a couple of other factors, you have your diagnosis – whether it’s Aspergers, PDD-NOS or autism.

The proposed DSM-V has the following stipulations, all of which must be met:

  1. Persistent deficits in social communication and social interaction across contexts. Individuals must display all of three symptoms that are worded in very specific terms.
  2. Restricted, repetitive patterns of behaviour, interests or activities. Individuals must display two of four symptoms that again, are very specifically worded.
  3. Symptoms must be present in early childhood.
  4. Symptoms together limit and impair everyday functioning.

The groupings of symptoms, in conjunction with the way in which they are worded, means that it will be more difficult to get an ASD diagnosis, particularly for individuals on the “Aspergers” end of the spectrum. There is a segment of the ASD population who are regarded as “high-functioning” relative to people more severely affected by autism. These people may not meet all of the criteria laid out in DSM-V.

What this means is that although the actual incidence of autism will continue to climb, we may see a decline in actual diagnoses. The general public will be misled into believing that the autism epidemic is being brought under control.

And a host of people who need services could be denied them, simply because they don’t meet the right combination of conditions listed in a manual.

It is important to note that the DSM-V is, at this stage, a draft. It will in all likelihood pass through a host of revisions based on feedback and testing. The DSM-V that is ultimately released could look very different to what is discussed here.

It will be interesting to see if, and how, the autism diagnostic landscape will change.

Autism Diagnosis: Blessing, Curse, or Both?

12 Jan

Receiving my older son’s autism diagnosis four and a half years ago was both a blessing and a curse. On the one hand, this diagnosis meant that there was something wrong with my son. I had known this for a long time, of course, but having it told to me officially meant that I could no longer hide behind the cloak of denial. I had to face the fact that my child had a developmental disability that would, in all likelihood, affect him for the rest of his life.

On the other hand, though, having the diagnosis meant that we could now get our son the help that he needed. Instead of having a vague sense that there was “something wrong”, we had a name for his condition. We had something to Google, we learned what services to seek, and we entered the labyrinthine world of special needs funding. Although we were devastated, having the diagnosis did make us feel a little more empowered.

About two years later, I stumbled upon an Internet support group for parents of children with autism. This group was not designed to diagnose, or debate, or judge. It’s primary purpose was – indeed, is – to give parents a safe place to talk about the daily challenges of autism, to vent about whatever was bugging them, and to freely utter the phrase, “Autism is bullshit” without having someone jump down their throat.

This group has turned out to be an invaluable resource for me. I have made friends there. I have been able to give and receive advice. I have come to appreciate that in the autism world, there are children both better off and worse off than my son. I have been allowed to express hope and despair, I have been able to laugh and cry.

And I have been able to learn. Through the experiences of other people, I have been able to develop some strategies to help myself, my son and my family. I have come to have a better understanding of what role my younger (neurotypical) son can play in his brother’s life. I have realized that even the strongest of marriages can be strained by the presence of special needs, and I have learned some ways to deal with that. I have learned about how different things are in the United States vs. Canada where autism services are concerned.

I have learned about the difficulties some parents experience, first when it comes to getting a diagnosis for their children, and secondly, when it comes to getting and retaining services. And just this week, I have learned that all of this may be about to change under the new DSM-V diagnostic criteria. Whether it changes for the better or for the worse is an opinion still up for grabs.

Tomorrow: how will the autism diagnosis change, and what does it mean?