Tuesday, June 5, 2012

Here it goes!

I probably should have created this blog a long time ago, to document Cédric's journey, the steps and associated feelings, if only for my own sake. Better late than  never, right? So I'm doing it now for myself, so that those who know him can follow his journey and maybe understand it better, and so that others in similar situations can benefit from our experiences and maybe make theirs easier.

It's hard to start and to limit myself, but I must start somewhere!
In this first post, I want to start by telling you what we went through to get a diagnosis.
April 2nd 2012, Cédric officially received an Autism Spectrum Disorder diagnosis. But the journey start way earlier! Since he was very young, Cédric always did things at his own pace and his own way. Dave and I realized early that he didn't follow "the norm". He generally would reach a developmental milestone a week or two after the limit given by the Health Unit. The gap did widen later.
Here's a summary of the (many, slow and painful) steps that led to a diagnosis:


  • Summer 2009: appointment with our family doctor to discuss the delays we observed and possible causes (Cédric is 18 months, speaks very little and does not walk);
  • September 2009: Cédric is evaluated by a speech pathologist, physiotherapist and developmental consultant who all conclude that there are global delays;
  • January 2010: appointment with a neurologist who does not see any neurological causes to Cédric's delays and says tests would be a waste of time and wouldn't reveal anything (Cédric is now 2 years old and walks but clumsily, tripping and falling often, and still doesn't speak much);
  • February 2011: appointment with a developmental pediatrician who refuses to give a diagnosis and only accepts to says there are signs of developmental delays at our insistence that we need something to insure services at school, which Cédric starts in September (Cédric is 3 years old, walks but does not run or jump, plays with very few toys and still speaks very little and not in sentences);
  • March 2011: appointment with a geneticist who does not see signs of genetic syndroms (and some testing confirms there is not genetic cause);
  • October 2011: appointment with a pediatrician who refers us to the children's hospital in Ottawa, CHEO (Cédric is almost 4 years old, still shows delays in all areas or development, both motor and cognitive skills, and also shows delays in social skills);
  • February 2012: appointment with pediatricians at CHEO who refuse to give a diagnosis of Autism Spectrum Disorder and only agree to confirm a global developmental delay;
  • April 2012: appointment via teleconference with a pediatric psychiatrist who accepts at last to give Cédric a diagnosis of Autism Spectrum Disorder!!
It therefore took close to 3 years between the first hints that something in Cédric's development was different and the official diagnosis.

But more than being slow, the journey was frustrating. At first, Dave and I liked the idea of not having a diagnosis because everybody, doctors and professionals included, said Cédric might just be developing a little slower than average without there being a medical cause to it, and it was reassuring to hang on to the idea that he might catch up with his peers all of a sudden and reach the norm. Eventually, just after he turned 3, it became more frustrating. We were preparing for Cédric starting school and his delays and needs seemed worse in that light. His sensory needs especially were almost a handicap (need to have his feet on something, need to rock, mouth games and noises, constant screaming, ...). His sleep deteriorated significantly and he started having tantrums which were never violent but very frequent, loud and long-lasting. It became hard to do anything or have him babysat and we started feeling the need for respite (with qualified people watching him). This is what really started the "hunt for a diagnosis", because every agency providing respite requires an official diagnosis! I feel it's important here to specify that we weren't trying to fit Cédric in a box but rather to find resources to help him, which is easier to do if we know the cause of the problem and how it works, as well as to help us with respite and access to services.
The strangest part is that, up until then,every doctor and professional we had seen had refused to give a diagnosis, but had said that didn't "think" it was autism, among other things because Cédric was "too social". In the start of the summer of 2011, we started wondering is that "counter-diagnosis" could be wrong. We noticed that Cédric, despite being social, had no understanding of social norms, that his sensory needs were very high, that his language was very delayed, limited to certain topics, and that the concept of conversation eluded him, that he plays with few toys and not in the expected way, and mostly that his digestive system was abnormal and seemed linked to his behaviour: all typical signs of autism! We started asking professionals again and they didn't seem sure either way. All seemed to think it was a possibility but had doubts, but none were able to explain their doubts and more importantly nobody was able to offer a different diagnosis that might explain better his way of being and acting... This is what made us insist to get an appointment at CHEO (the hospital located 800km from our hometown). That appointment was a total fiasco, the worse consultation of our entire journey, the most frustrating because both pediatricians there, one of whom specialized in children with developmental delays, seemed to refuse to give a diagnosis or even to agree that his symptoms pointed to autism, but neither had any better explanation. They insisted only a pediatric psychologist could give such a diagnosis (but we know some children, not to say many, who were diagnosed by a pediatrician or even a family doctor!). When we got back home, I started the hunt for a psychiatrist and after a lot of work and many phone calls, I managed to get a teleconference with pediatric psychiatrist at the children's hospital in Toronto. I filled a diagnostic questionnaire for autism on which Cédric got a pretty high score. After reviewing it, the psychiatrist observed Cédric and talked with us for about an hour. She almost redirected us to yet another agency in Toronto, but finally accepted to give us the diagnosis herself.
As for the positive note: her official diagnosis states first (and to me foremost) that "Cédric is an exceptionally beautiful 4-year-old boy with big eyes and chubby cheeks". Not every parent can say that have a doctor's note that their child is handsome :D

As to my feelings regarding all of this, I originally wanted to understand and therefore seeked a diagnosis to be able to research it and know everything on the subject to help Cédric better. After a while and a lot of research, I realized that a diagnosis might give me some answers but that in most cases children are unique and nothing is certain (the likelihood and rate of development, the possibility to function "normally" in society, etc.). I decided at that point (around the time he turned 3, I think) to take things one day at a time, hence the name of this blog!

4 comments:

  1. Yahoo!! You started a blog!! Rather, I should say, a SECOND blog!!! Thank you so much for sharing Cedric's story. The whole "diagnosis" thing is super-frustrating for a lot of families. A paediatrician diagnosed my nephew at age 2!! But this is what Monique shakes her head at. Mainstream doctors try to slap a label on the child but all the symptoms simply point to UNWELLNESS! That's why, Monique could care less about the label. She goes by the description of the specific child and treats that. It's like "customized" healthcare!!

    Good luck on your journey MF. Can't wait to read more! :)

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  2. I so agree with you! Like I said, the point really wasn't to label, the problem is that without one, you don't get access to all the services. The system is far from perfect...

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  3. Dom's Mom (Christina)June 8, 2012 at 4:55 PM

    Like we learnt today, each are as unique as a snowflake! We viewed an exceptional clip today in our workshop, about how we talk about autism. If ever you have a chance to research this DVD and get a hold of a copy its an eye opener. Its called the power of words by Judy Endow. WOW! Look forward to hearing more about my little man and the trials!

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  4. I didn't realize you were having challenges. You are right about each child being different. I hope you have found support with others who are going through what you are. My cousin's daughter has a form of it but she is violent and lives in a specail home where they care for her. It has been hard on her and the family but their younger children don't live in fear of being hurt anymore. She comes home for visits. Sending a hug your way.

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