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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)

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.)

2011 – My Year In A Nutshell

27 Dec

January 2011

I start off the year on a good note. Tired and slightly hungover, I take part in the Resolution Run on New Years Day. With my wedding just four months away, I start to stress about the little details, like where to get married and where to hold the reception.

This month, I also donate blood for the first time  – at least, the first successful time. My inspiration is baby David, affectionately known as Captain Snuggles. Sadly, David dies just days later, at just 8 months old.

 

February 2011

We have a wedding venue and a minister! I will be getting married in the same church where both of my children were baptized into the Christian cult fellowship. My running has slowed down a little, because the stress of wedding planning has made me sick.

March 2011

We have a venue for our wedding reception! We almost booked the first place we looked at, but then we went to see the hall at the Royal Canadian Legion. They initially had the hall booked for our wedding day, but the other people have graciously agreed to move their event to the previous weekend. This means two things. First, we get to have our reception in a place that supports the veterans. And second, we now have all of the information we need to send out our wedding invitations.

This month is frantically busy. We have left most of our wedding planning to the last minute, so we have to book our DJ, our flowers, get a cake sorted, find someone to do my hair and makeup, and so much more.

April 2011

My wedding is on the last day of this month! Most things are organized, but my hairdresser and my makeup person have both bailed on me. While I dissolve into tears, my fiancé gets into the car and goes out for a drive. When he comes back, he tells me that the hair and makeup problem is all sorted out.

My soon-to-be brother-in-law introduces me to a wonderful lady, who agrees to be in charge of both of my boys for the day of the wedding. This is a very big deal for me. I worry about how my son with autism will cope with such a big day.

The big day arrives, and it goes perfectly! My hair and makeup look lovely, and the dress – made by my mother-in-law – is perfect. I marry the man I love, and everyone has a lovely time, including the kids.

May 2011

I spend time with my Mom, who has come for the wedding. We go shopping, we go for drives, we spend time with the kids, we chat and drink wine. It’s wonderful to have her with me.

One of the lowest lows of the year happens this month, with the unexpected death of our friend Ken, just days after our wedding. It is an honour to have had Ken and his wife at the wedding. It is good that we got to see him one last time. He will always be missed.

June 2011

My younger son James graduates from Kindergarten. I have a surreal kind of feeling as I watch my baby up there on stage, wearing his construction paper graduation cap, receiving his Kindergarten diploma. When he and his classmates start singing their songs, I just about die from the cuteness.

 

July 2011

I am having difficulty with my running. I struggle to find time, I am lacking motivation, and I am injured. I have missed the last two races I was registered for. On the plus side, the sporadic nature of my recent training does not appear to have affected my speed. There has not been any improvement in my performance, but there hasn’t been a noticeable decline either. This may not seem like a big deal, but when you’re struggling with something you usually love, you have to take what you can get.

August 2011

2011-08-25 11.19.19This month turns out to be unexpectedly busy. The big news is that my older son George graduates from his provincially funded autism intervention program. He has had two years of IBI followed by a year of the school stream program. His progress has been off the charts. He is ready for this graduation. I, on the other hand, am not. It represents a growing-up that I am just not ready for.

Things seem to be looking up with my running! I run two races this month, just a couple of weeks apart. My performance in the first isn’t great, but in the second, I do a lot better than expected.

September 2011

George turns 8, and I’m not really sure how this has happened. It seems like just yesterday that I held my tiny baby in my arms for the first time, and now he’s this long lanky boy who keeps growing out of his shoes.

My 2011 Run for Autism is three weeks away. I run a 10km race at the zoo and make a personal best time. The following morning, I go out for a long run in foul weather, and the day after that, I can barely walk. I feel good, though. I feel ready for the half-marathon.

October 2011

75738-1975-025f[1]The day has finally arrived: the race I have been training for all year. This is the reason I run – to raise funds for autism services, to make the world a better place for children and youth with autism and their families. I dedicate this race to my son George: my joy and my inspiration. If he can live every day with the challenges of autism, I can run a two-hour race.

It goes really, really well. I get a personal best time for the half-marathon and beat the 2:20:00 target that I’ve set for myself. What makes this day even more amazing is that I have done really well with my fundraising for this race, surpassing my combined total for the previous two years.

November 2011

I am insanely busy at work. I am on four projects, and I am also in charge of the month-end reporting for all of the projects in my department’s portfolio. I am enjoying the additional challenge that this gives me, and every month I am getting better at it.

I feel like I am starting to gain some traction in my writing. It is hard work, building up a blog following, and it’s an ongoing process. I am becoming quite prolific, though. I have my blog, I write for an ezine, I write for a project called World Moms Blog, that is growing very fast. I have been voted as one of the top 25 Canadian mom blogs, and people are starting to ask me to guest post for them. I have also resurrected the novel I started working on a couple of years ago.

I run another race at the end of the month, and demolish my previous personal best time. If I can do this after the difficult season I’ve had, what will I be capable of if I actually train? I ask my running friend Phaedra to be my coach for next year, and she agrees.

December 2011

As usual, my Christmas preparations are a last-minute frantic rush. Somehow, I get my shopping done on time and the day is a big success. We all weather the festive season with life and limb intact. It is a hard time for George, with all of the sounds and lights and people and busy-ness, but he gets through it.

On Christmas Day, James turns six. I feel a little weepy over the fact that my baby is no longer a baby. There is just something about the transition from 5 to 6.

Also on Christmas Day, I somehow manage to pinch a nerve in my back. It’s eerily reminiscent of 2 years ago, when the same thing happened. The incident in 2009 puts me out of action for two months, and I really hope this does not happen again.

The story continues in 2012. What script will I write for my life in the coming year?

The T-Word: A Scary Word For Autism Parents

13 Apr

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)