tag:blogger.com,1999:blog-36103000446175150692024-03-13T23:26:13.141-04:00One day at a time: Cédric's journeyEveryday life with a little dude with complex special needs!Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-3610300044617515069.post-65357304344931428512020-10-27T19:56:00.002-04:002020-10-27T20:03:20.336-04:00SHINE (DLG4 genetic mutation): We found the egg!<p><span style="font-family: "Helvetica Neue";">Quite the title! And so much to share to explain…</span></p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">I’ll try to be concise and to focus on the most important aspects.</p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">First, it’s been almost 5 years since my last post, so of course, things have happened.</p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">Second, among those things, we have received a genetic diagnosis (which has led us to a group of parents of individuals with the same mutation) and that changed everything.</p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">Finally, I just re-reading my last post, published on January 18th 2016, and I realized that in almost 5 years, everything has changed, but nothing has changed, except we found the egg!</p><p class="p2" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 17px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">In “the chicken or the egg”, I wrote about autism vs intellectual disability, about primary vs secondary diagnoses, about correlation vs causation, and about the repercussions of all of that on access to services and the image it gives us of Cédric and his functioning.</p><p class="p2" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 17px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">Thanks to a genetic test, from what the geneticist told us and what we understood from it, Cédric’s genetic mutation is the cause of and the explanation for all his diagnoses: autism, intellectual disability, epilepsy (and the rest). So scientifically speaking, it is in fact the egg, and philosophically speaking, it has also made a world of difference in our understanding and perception!</p><p class="p2" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 17px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">Cédric has a de novo genetic mutation (which means it’s not hereditary) on the DLG4 gene (on chromosome 17).</p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">In his case, it is a frameshift mutation.</p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">The DLG4 gene is responsible for the production of the PSD95 protein. As a result of his mutation Cédric only produces half of the protein. And PSD95 is a scaffold protein. It is therefore very central to brain function and influences the production of 60 to 80 other proteins. So it has major consequences.<span class="Apple-converted-space"> </span></p><p class="p2" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 17px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">The fact that a clear cause explains everything changes nothing in and of itself, and many would say the cause doesn’t matter, but for us it’s reassuring, it helps us better understand the why and the how.</p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">Unfortunately, there are only about 40 cases diagnosed in the world for now. Fortunately, this is 2020, and the world is small. We have joined about 15 other families affected by a DLG4 mutation in a Facebook group and the feeling is that of finding our clan.</p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">Contrary to our experience in groups centred around autism, the commonalities between Cédric and the other “DLG4” individuals are incredible. The other parents’ experiences are very similar to ours and we recognize ourselves in their comments and descriptions.</p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">It is a reassuring and enriching exchange.</p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">Since it is the infancy of the scientific discovery of the syndrome, it’s still being defined by the medical teams. The various researchers working on it around the globe are in the process of establishing the phenotype. But if the information we have, a group of parents has decided that the current medical term being used (for now vague and not very pretty) just won’t do! So we have adopted the term SHINE syndrome, an acronym for the symptoms most commons in our children:</p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">S: Sleep disturbances</p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">H: Hypotonia</p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">I: Intellectual delays</p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">N: Neurological disorders</p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">E: Epilepsy</p><p class="p2" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 17px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">They have created a website which described SHINE syndrome and shares our families’ experiences as well as articles and research, and which will help with awareness: <a href="http://shinesyndrome.org/"><span class="s1">http://shinesyndrome.org/</span></a> They have also created a logo for the syndrome.</p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">I really like the choice of the term SHINE and their choice to include stars in the logo. However, for me, for some reason, in my perception of who Cédric is, the genetic aspect is crucial. So I would have liked the logo to include the genetic aspect and being a bit of a rebel, I decided to make my own version (among other things for my blog). I kept many aspects (title, stars, main colours) and I added a stylised strand of DNA (which I designed myself), and since I love rainbows… So here’s my version of the logo (which you can also see in the new header at the top of the blog):</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-QVQc1fWurWM/X5i1EmENXWI/AAAAAAAAMMo/WIVctx2HSVsRy895zrs1aCs31HTsR_wBwCLcBGAsYHQ/s800/MF_logo.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="800" data-original-width="800" height="320" src="https://1.bp.blogspot.com/-QVQc1fWurWM/X5i1EmENXWI/AAAAAAAAMMo/WIVctx2HSVsRy895zrs1aCs31HTsR_wBwCLcBGAsYHQ/s320/MF_logo.png" /></a></div><p class="p2" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 17px;">I could talk about so much more: what it all means for potential treatment, what it hints towards as fas as autism goes, what repercussions it had on services, the decisions it lead us to take, etc.</p><p class="p1" style="font-family: "Helvetica Neue"; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">But the main thing is: we feel like we found the egg!</p>Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com0tag:blogger.com,1999:blog-3610300044617515069.post-26009424578768975252016-01-18T19:43:00.000-05:002016-01-18T19:43:21.964-05:00The chicken or the egg<span style="font-family: Trebuchet MS, sans-serif;">Happy New Year!<br /></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When looking at my previous post, I realised I skipped a whole trimester.<br />So here's a short recap of the last trimester of 2015:<br />- transition from IBI to school, which went well thanks to an amazing team (at IBI as well as school),</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">- quiet Thanksgiving and fun Halloween, dressed as ninjas,</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">- relaxing vacation in the sun for the parents,</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">- fall in the stairs for me, the day we got Mani, our new service dog,</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">- and vacation in Florida for Christmas, with a lot of sun, days at the parks, and our first Disney Cruise.<br /></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">But let's move on to 2016!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Our year, as far as Cédric's journey goes, started with the results of a consultation with a team of experts. They observed Cédric in October to advise us concerning some of his more extreme and hard to understand behaviours.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">They offered a variety of advice but most importantly one core conclusion which gives us a better idea of who Cédric is and how to approach his development, but which also brings me to the following question: the chicken or the egg?</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Let me explain. Cédric has had an autism diagnosis since the age of 4, and a diagnosis of intellectual disability for about a year. As my previous post mentions, he has a chronological age of 8, but a developmental age between 1 and 2.<br />The psychologist of the team concluded that the approach we take regarding Cédric's development, abilities, and learning should take this disability into account, even more so than the autism. Establishing for Cédric goals and expectations typical for children on the spectrum wouldn't be realistic, unfair towards him, and would only lead to disappointment and failure. We must first consider his developmental age and abilities.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">But the system of services in place in Ontario consider autism his primary diagnosis. He therefore accesses autism services with autism specialists. And as he already gets services for that diagnosis, he can't access the corresponding services with the agency specialized in intellectual disabilities. This system is in place to avoid service duplication, partly to lower costs and to insure that all children access services within reasonable timeframes.<br /><br />And it's true that according to the most recent studies and theories that Dave has read, it seems autism is genetic, and it is autism which causes the brain to function differently during its development, preventing the typical connections to happen and in some severe cases, causing an intellectual delay or disability.<br />We often ask the question of the chicken or the egg, and the theory of evolution answers rather clearly that the egg came first. In our case, the diagnosis of autism is in fact primary.<br />But when we ask the question philosophically, things are more complex. For the chicken or the egg, we are usually trying to raise a question with no answer, an endless circle, and everyone can argue their view of the topic.<br />In our case, if we stay with the egg, we limit Cédric's access to specialists who might be better able to understand his functioning. The chicken, Cédric the way really is in the end, matter more than the egg. Cédric is more affected and limited by his intellectual disability than by his autism.<br />And in fact, as there is comorbidity of the two diagnoses, regardless of whether they are two separate things or whether one causes the other, he should have access to specialists of both.<br /><br />If the question was purely philosophical, or purely scientific, it wouldn't matter much. But because of the issue of access to services, it is crucial. It even affects his schooling. First, just as for us at home, the team who works with Cédric (teachers, teacher aids and consultants) must change their perspectives and expectations. Moreover, and most importantly, the school has an autism classroom, brand new this year, just in time to welcome Cédric. But it also has a development classroom, more adapted to children with various diagnoses, and often, a intellectual delay or disability. And the question therefore is whether Cédric should be in the autism classroom, or in the development classroom.<br /><br />The question is recent and hasn't yet done or changed anything.<br />Personally, the psychologist's conclusion doesn't surprise me and confirms what we felt ourselves. It's a new step in the grief that is having a child with special needs. We always hang on to the idea of a remission, sudden progress, a magical medication or procedure. But it's also a step towards a better understanding and acceptance of our son as he is and it likely that more realistic approaches and expectations would help us eliminate frustrations for him as well as for us.<br />But I mostly feel a lot of questions, phone calls, decisions to make, and changes coming. I can only hope that they are for the best and help us better understand and support our little dude!</span>Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com1tag:blogger.com,1999:blog-3610300044617515069.post-3635079318827663952015-09-14T16:10:00.004-04:002016-01-20T09:52:43.224-05:00How old is he?<span style="font-family: "trebuchet ms" , sans-serif;"><span style="background-color: #b6d7a8;">Simplest question in the world for a parent! At first we count in months, than years but with quarters and halves. And eventually just years. Often we marvel at how fast time flies and wish they would stop growing up altogether.</span></span><br />
<span style="background-color: #b6d7a8;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: "trebuchet ms" , sans-serif;">For me however, as Cédric progresses in age and grows in size, this question is getting harder to answer, or at least harder for me. I struggle with the intent of the question, with how to answer it, and with which degree of detail I want to go into.</span></span><br />
<span style="background-color: #b6d7a8;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: "trebuchet ms" , sans-serif;">There tends to be sort of three scenarios:</span></span><br />
<span style="background-color: #b6d7a8;"><span style="background-color: white;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span style="background-color: white;"><span style="background-color: #b6d7a8; font-family: "trebuchet ms" , sans-serif;">- the person asking sees him or somehow already knows about his delays and autism, so that's easy, all they want to know is his chronological age.</span></span></span><br />
<span style="background-color: #b6d7a8; font-family: "trebuchet ms" , sans-serif;"><span style="background-color: white;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span style="background-color: white;"><span style="background-color: #b6d7a8; font-family: "trebuchet ms" , sans-serif;">- the person sees him and can tell he's big, but can also tell there might be something different about him. Here I wonder if they just want to know his age, if they are trying to determine whether he's just really big for his age which would explain his behaviour, or if there is something different going on and trying to ask what without being rude. Sometimes I give his age and let them conclude what they want, sometimes I tell them his age but specify he's on the spectrum. Sometimes I don't mind the subtext to the question, sometimes it annoys me...</span></span></span><br />
<span style="background-color: #b6d7a8; font-family: "trebuchet ms" , sans-serif;"><span style="background-color: white;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span style="background-color: white;"><span style="background-color: #b6d7a8; font-family: "trebuchet ms" , sans-serif;">- and the last might be the most taxing and hard for me. I start talking to people I don't know without Cédric being present and the conversation goes to kids. The question of age comes up and when I say his chronological age, people tend to comment on how fun that age is, all the things they can do at that age, the new developments and possibilities. And I have a choice to make. Do I nod along and move on to another topic or even another person to talk to? Or do I explain? This scenario is hard for two reasons. First it is sad almost every time to be reminded of all the things other kids his age do, like, learn, etc. that he doesn't. And second, it might be a quick note to the conversation but quite often it turns into a whole long conversation about autism and sometimes I don't feel like going into all the details, focusing my thoughts on all of that again. But I also feel that it helps awareness, so I feel somewhat compelled to share.</span></span></span><br />
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<span style="background-color: #b6d7a8;"><span style="font-family: "trebuchet ms" , sans-serif;">And if you're wondering what the answer to the question is, Cédric is 7 years old chronologically, but functions at around 1 to 2 years old developmentally according to the latest assessment, although it's not uniform. He might do some things like a 1 year old and others more like a 3 year old would.</span><span style="font-family: "trebuchet ms" , sans-serif;">So as you see, simple question but complicated answer!</span></span></span>Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com0tag:blogger.com,1999:blog-3610300044617515069.post-20895281295589845462015-05-27T17:18:00.003-04:002015-05-27T17:32:00.231-04:00Sponge Cédric sensitive pants!<div style="margin-bottom: 0in; orphans: 1;">
<span style="font-family: Trebuchet MS, sans-serif;"><span style="color: #222222;">One
of the stigmas that has long been associated with autism is that
children on the spectrum don't experience empathy and don't have
feelings. For a long time, they were thought of as cold and
distant.</span><br /><span style="color: #222222;">This
prejudice is one of the reasons doctor maintained for a long time
that Cédric was not autistic because he was "too
social".</span><br /><span style="color: #222222;">Recently,
one of my friends posted an article on Facebook which presented the
theory that not only do autistic children have feelings (which is
obvious in Cedric's case) but that they might even feel more than
neuro-typical people. According to the article, it might be the
reason some of them refuse contact and shy away for other people's
presence: they have such a sense of empathy and feel to such a degree
that it is too intense.</span><br /><span style="color: #222222;">Just
like everything else in autism it seems, this trait can be different
from one individual to the next. But personally, while reading the
article, all that came to mind was that this was obvious in Cedric's
case.</span><br /><br /><span style="color: #222222;">I
call Cédric my sponge! He captures the feeling of others around him
and though he doesn't respond to them as we would expect, they affect
him tremendously. He doesn't console us when we cry or are
frustrated, but the emotional climate of his environment dictates his
mood. He absorbs what surround him. For Cédric, moods are
contagious. So if the people around him are frustrated, stressed,
anxious, or impatient, Cédric gets frustrated and angry easily. If
on the other hand whoever is taking care if him is calm, happy and
patient, Cédric stays in a good mood.</span></span></div>
<div style="margin-bottom: 0in; orphans: 1;">
<span style="font-family: Trebuchet MS, sans-serif;"><span style="color: #222222;"><br />I've
known this for a long time. When he was a baby, Cédric only cried
when me was in pain or if another child was crying. But it was
confirmed to me again during our vacation in Florida. I realized one
of the reasons Cédric feels so good in Disney World is that
everybody feels good in Disney World. The crowd doesn't bother him as
long as the individuals who compose it are happy. In Disney World,
everyone is happy, relaxed, on vacation! He only got frustrated at
meal times, when he was hungry, but also when everyone around us was
hungry and fighting to find a seat in the restaurants. At the water
park, he is totally relaxed in the lazy river where everyone is
floating around and he is happy in the small, fairly calm pool where
young children are playing. We tried the wave pool, however, and even
though he loved the waves and jumping with his Dad, he got upset and
frustrated for no apparent reason to us... until I realized that
there were many people around us and all loud and overexcited. The
intensity of the emotional mood was too high and Cédric wouldn't
deal with it.</span><br /><br /><span style="color: #222222;">The
problem of a sponge is that it needs wringing. When Cédric is doing
well, he reacts to our moods but recovers quickly, but when he is
tired, sick, hungry, too hot, etc., he loses his ability for
self-wringing. We have to change the climate around him, often
physically remove him from the place, and let the sponge drip slowly.
At the water park, we had to leave the pool, give him a snack, go
around the river, and play with him in the small pool before he
really managed to get his good mood back,</span><br /><br /><span style="color: #222222;">It
is therefore for us a daily exercise to stay as calm as possible to
avoid entering a vicious circle. Good and bad moods are contagious
for him, but for us too. Cedric's moods especially so as he is very
demonstrative. So if we're tired, frustrated or anxious, Cédric
feels it and has tantrums, which makes us more tired and frustrated
and less able to patiently deal with his behaviours, and as he feels
that we're angrier, he has more tantrums, etc., etc.!</span><br /><span style="color: #222222;">It
is also an important factor in our choice of activities, visits and
maybe even more in who we choose to watch him. As much as possible,
we select people who are positive but most importantly patient and
calm. Someone too active and intense, even if in a good mood,
always gets overwhelming for him and ends up having problems with him
(difficult behaviours, tantrums, crying, ...).</span><br /><br /><span style="color: #222222;">The
simple fact of having realized all that helps me analyze the causes
of his tantrums and to remain more calm. But our patience has limits
and the rest of our daily life doesn't stop in order to help us, so
we exercise (and do yoga for me) and go on vacation as often as
possible to recharge our batteries!</span></span>
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<a href="http://1.bp.blogspot.com/-zV2RaBAc3ys/VWY3ol6Ul0I/AAAAAAAAIsA/rDOuhsMTLWE/s1600/IMG_6502.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://1.bp.blogspot.com/-zV2RaBAc3ys/VWY3ol6Ul0I/AAAAAAAAIsA/rDOuhsMTLWE/s400/IMG_6502.JPG" width="300" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="color: #222222; font-size: x-small;">Here's the little dude, all calm and happy in a teacup :D</span></span></div>
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Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com0tag:blogger.com,1999:blog-3610300044617515069.post-63971166979418557092015-01-27T19:28:00.000-05:002015-02-14T17:37:09.123-05:00Fist of monkey<span style="font-family: Trebuchet MS, sans-serif;">A while ago, on a podcast called Edumacation, I heard a story about a group of Shaolin monks showing great interest in a baby. The baby had thrown his hand very quickly and grabbed his dad's glasses right off his face. The monks were amazed and said the baby had "fist of monkey", in other words what they considered to be an innate ability for Kung Fu where the body was almost bypassing thought and instinctive springing into action.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The story really resonated with me.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Ever since he was young, Cédric was clumsy and diagnosed with low muscle tone and delays in gross and fine motor skills. To this day, at 7, he doesn't hold utensils properly, he's only slowly learning to twist things, his pincer grasp is very weak, he can jump up but not forward.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">On the other hand, ever since he was very young, he's been lightning fast. He can shoot a hand forward and grab what he wants faster than Lucky Luke's shadow, he can move every part of his body independently yet simultaneously in different directions to stop you controlling him, say when you're trying to take a blood sample or an X-ray, he can stop you from tickling or kissing him.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Having now learnt the basics of Gracie Jiu Jitsu, I realize it goes even further than that. The Gracies developed brazilian Jiu Jitsu for self-defence, by perfecting techniques that use gravity, balance and the body's strengths and weaknesses so that even a small person could get out of fights or attacks unhurt. As it turns out, when he tries to stop you holding him in place, or tickling him, Cédric uses those exact techniques. He knows to use a certain grip to push you away and a different one to pull. He knows to swim out his arms when you try to hold him. He knows to "shrimp out" by pushing his bum out and using his legs to get out af a hold. He knows to grab one weak finger, rather than your whole hand or arm, and pull it back when trying to make you let go of him or of something he wants. He knows to tuck his chin down so we can't hold his head. He knows to wait a little when he's really stuck and shoot out when he feels an opening. His body just does all those things entirely instinctively.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">As I write this, I realize it sounds like we make a habit of fighting with him or holding him in place... Not the case. We noticed most of this in everyday situations, trying to play with him, trying to stop him taking something he shouldn't, trying to take a blood sample, etc.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">During the Christmas holidays,we had an opportunity to experience this a bit more. We took him for hyperbaric oxygen treatments for which we have to stay in a small container for 90mn. He decided he didn't want to be there and had to be restrained quite a bit and I realized just how strong, fast, flexible, and efficient he is. He even went in once with the technician because I was sick. We're talking about a tall strong man who was trained in Gracie Jiu Jitsu while in the military. And even he came out amazed at Cedric's use of techniques and his ability to get out of anything.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Ever since I heard the "fist of monkey" story, I have therefore felt like Cédric has that defensive instinct. And ever since then I have wondered how come. To me, there are three possible explanations.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">1. He just has a talent. Some people are good at music, or sports, or poetry, or drawing. No reason why he couldn't just be good at martial arts.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">2. Because autism is at least a part of who Cédric is, I can't help but analyze things through that lense. I wonder if the way his brain functions is responsible for this in some way. Maybe having less complex thoughts allows for a more direct use of his body; less rationalization and more animal instinct. Or the opposite. Some people and reasearch suggest that the brain of autistic children is over developed, and we know that many of them deal with sensory input differently. So maybe Cédric just has a way more developed sense of his body and how it moves.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">3. Hubby has also suggested the possible influence of epigenetics. This is a theory that even within one generation, what parents have learned and practiced can pass on to their offspring. As his dad has been practicing martial arts for years, it's possible that Cedric is genetically predisposed for them.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">All I know is that if ever he develops the attention span and interest to sit in a class and learn a martial art, he will be a force to be reckoned with!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">A small PS to add a digiscrap layout which shows my little ninja (I journaled in French about his ability to sneak up on us unheard and his defense skills):</span><br />
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Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com1tag:blogger.com,1999:blog-3610300044617515069.post-79259634689471236232014-07-10T14:14:00.000-04:002014-07-10T16:33:02.834-04:00At your service<span style="font-family: Trebuchet MS, sans-serif;">If you know us personally, or if you have read the other entries on this blog, you know that because of past events with our dogs have led us to decide to get a service dog.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We made this decision a year and a half ago. I won't get into the why, but you can read about it here: <a href="http://cedriconedayatatime.blogspot.ca/2013/02/dog-tales-part-deux.html">Dog Tales Part Deux</a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I concluded then that I would get back into price and financing, and I thought I might update, but I haven't talked about it since...</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">And three weeks ago today, Helio traveled North to finally join our family :D</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">So now it's definitely time to get back into it and tell you all about our journey to getting a service dog.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">As I have a year and a half to cover, this will be a massive post, so I will try to keep it organized and clear (wish me luck).</span></div>
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<u><span style="font-family: Trebuchet MS, sans-serif;">The process (wait, funding, preparations):</span></u></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Between late January to mid-April: the trainer tested a variety of dog for the right temperament. After a few fails she e-mailed us on April 14th 2013 that she had found us a puppy. She told us he was a purebred yellow lab donated by a breeder and roughly 4 months old. And that he didn't have a name yet, which meant we could pick :D.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We named him Helio after Helio Gracie, the founder of Gracie Jiu Jitsu (brazilian Jiu Jitsu). We had made a list of potential names and Dave had suggested it. I had agreed if we were getting a "yellow" male dog, as it comes for the Greek word for "sun" (helios). So when she said male yellow lab, it seemed like the best choice form our list!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">In the meantime, I contacted all the local charitable organizations. We chose a pay service (I explained why in the post linked above) and we were ready to pay for the dog ourselves if necessary. The trainer is also very flexible and had agreed to a payment plan. But we decided to ask for financial help.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The total cost for the dog including boarding, vet care, and of course training amounted to $13,560. As the training centre is over 900km away and the trainer brings the dog to us to train us for a week, there was also travel cost of about $1800.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I drafted a letter to explain why we thought we needed a service dog, why we chose this training centre and how much it would cost and sent it around. We were just hoping for a little help so we were happy when two organizations gave us $1000 each: Les Perles du Nord (a French women's club) and the Golden Beaver Masonic Lodge. But we were overwhelmed and speechless when I received a call from the Kiwanis Club telling us that they wanted to fund the service dog. THE WHOLE COST OF OUR SERVICE DOG!!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">In our excitement we forgot to add the travel cost to the total we gave them, so in the end we paid those, which really seems more than fair, lol.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The waiting period was a big tough. We missed having a dog in our house. The trainer is a very busy woman who trains 20 dogs a year, certifies schools, and is working very hard at making service dogs more regulated and more available in Canada (and even the rest of the world). That is great and one of the reasons we are so happy we chose her services. The downside for us is that we were starving for news and felt like we were never getting enough...</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">As he was a puppy, the first 8 months were pretty uneventful. A dog has to reach adulthood before doing serious task training and community outings. So from April to December, there was not much for the trainers to report. We did call or email a few times and learned that he was very sweet and cuddly, very smart, a bit of an escape artist (they had to change his kennel lock 3 times), very gentle with and attracted to children. All in all, every time we talked, they told us that he was amazing, that he was one of the best dogs they had ever trained and that all was going very well.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I have to admit that waiting in between calls was really hard for me and I even worried we were getting scammed. I had absolutely no basis for thinking that, it's just one of these things my brain does to me. I have a vivid imagination :O</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">But every time we got news, I felt very excited and thought we won the lottery!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">As of January 2014, we learned that he was still in great health, still doing very well and starting his public access training.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We also had a hard time getting photos, but bugged the trainer regularly and got a few over time, which allowed us to see him grow:</span></div>
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<a href="http://1.bp.blogspot.com/-QBmMNrWcaVc/U6a99ocV1AI/AAAAAAAAHLw/_G4w_ln0px8/s1600/helio_apr_13.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="http://1.bp.blogspot.com/-QBmMNrWcaVc/U6a99ocV1AI/AAAAAAAAHLw/_G4w_ln0px8/s1600/helio_apr_13.JPG" height="275" width="400" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> This was in April, shortly after she got him (roughly 4 months old)</span></div>
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<a href="http://4.bp.blogspot.com/-3klkYD2-dqs/U6a-EGnqgdI/AAAAAAAAHL8/9XWELLlTS64/s1600/helio_jul_13.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="http://4.bp.blogspot.com/-3klkYD2-dqs/U6a-EGnqgdI/AAAAAAAAHL8/9XWELLlTS64/s1600/helio_jul_13.JPG" height="400" width="300" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> This was in July (around 7 months old)</span></div>
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<a href="http://4.bp.blogspot.com/-ss6PHxE61pY/U6a-EOGoheI/AAAAAAAAHL4/Qim5dOuwDPw/s1600/Helio_may_14.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="http://4.bp.blogspot.com/-ss6PHxE61pY/U6a-EOGoheI/AAAAAAAAHL4/Qim5dOuwDPw/s1600/Helio_may_14.JPG" height="400" width="198" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">This was in May this year, right before he came to us (about a year and a half old)</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">During that whole period, as I said we had no dog. And we had seen Cédric be a little worried around big dogs. So after meeting the lady in charge of the St John's Ambulance Therapy Dogs team, we learned of a program that sounded great for us. The therapy dogs go to the local library for a program called Tales and Tails (or possibly Tails and Tales, I've never seen it written, lol). The goal is for any child with difficulties reading to practice by reading to the dog, without any correction or judgement. But as most of the dogs are large breeds, we starting bringing Cédric every Wednesday night, just to be around the dogs, see what he did and take notes, and maybe show him how to behave with the dogs. If I can pat myself on the back here, this was a GREAT idea! At first, Cédric wanted nothing to do with the dogs and just wanted to run around the library. And over the year, he started first noticing the dogs and paying some attention to them, calming down and staying around, then being more gentle with them and eventually hugging them right away when seeing them and enjoying the interaction. That was promising and encouraging as we heard a good amount of people saying their children never took to the dog and never bonded and we were hoping to help prevent that. It also allowed us to tell the trainer that Cédric liked to put his feet on the dogs, to play with their paws, to grab hair and touch noses. She took note of it all and made sure to get Helio used to all that.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We also used that time to prepare the house: we made room for Helio's crate in Cédric's room, we ordered a custom name tag, I had my Dad transform a barrel planter into a raised bowl, and I made Helio pillows.</span></div>
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<a href="http://4.bp.blogspot.com/--pwLBViCSRY/U6cw0I9tgKI/AAAAAAAAHMY/8V51jyDBpi0/s1600/helio_bowl_tag_pillow.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="http://4.bp.blogspot.com/--pwLBViCSRY/U6cw0I9tgKI/AAAAAAAAHMY/8V51jyDBpi0/s1600/helio_bowl_tag_pillow.JPG" height="300" width="400" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Here you can see the bowls, the tag and one of the pillows :D</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We also made sure to share everything with friends and family every time, and I LOVE how everyone responded. It felt like a gamble and every time, I thought maybe we should keep it to ourselves in case it didn't work out, but where's the fun in that... My Facebook posts with updates and photos of Helio are my most popular posts (hmmm, in retrospect, maybe I should be offended... lol). Each time, it made me really happy to see everyone's excitement and support in this new endeavour.</span></div>
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<u><span style="font-family: Trebuchet MS, sans-serif;">The big week (bonding and training):</span></u></div>
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<span style="font-family: Trebuchet MS, sans-serif;">On May 31st, Helio and his trainer drove over 900km to reach us in our remote Northern Ontario home. They left very early in the morning, hit an accident on the highway, and ended up getting here past 8pm.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When you pick up a puppy from a breeder, they are young and usually happy go lucky. But we had to keep in mind that this was an adult dog who did not know us and had also spent a very very long day in a car.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">He was shy, cautious and very tired!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">So the trainer suggested leaving him loose alone in the backyard while we talked. Slowly but surely, he came closer to us. She left shortly after. The idea was for him to bond with us and for that to happen, it was better if she left quickly. He spent the evening with us, sleeping really close to us, seeming afraid of the house and then slept the night in his crate in Cédric's room.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The rest of the week was intense:</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">- Sunday was put aside entirely to him bonding. Oddly enough, the most important thing was for him to bond with me, because as I will be his primarily handler, he needs to love me, want to please me and therefore obey me. So even before him bonding with Cédric, he needed to get used to me being in charge. I walked him, kept him close, gave him lots of love, and the guys even left us alone for a couple of hours so that I could make him visit the whole house without the impulsivity and noises of Cédric. He did seem quite scared, or at least cautious. Kitchen noises scared him a lot and he stayed a good distance away from Cédric.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">All this, while completely normal and to be expected, is still a little hard to take when all you want is for this dog to be our best friend, especially Cédric's.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The two most important pieces of advice the trainer had for us, and that I kept repeating to myself, were "slow and steady wins the race", meaning things take time and try not to rush them, and "let him come to you". She told us, and we noticed, that Helio is a very cautious, very sensitive dog. She chose him for that to feel our moods, and mainly Cédric's. He won't be the kind of dog who is best friend with everyone. And coming at him too fast, forcing him to be close when he was scared, could have actually made things worse. So I concentrated on forcing him to be around, not too removed, to make him understand he was part of our family, but giving him enough space to observe without feeling overwhelmed.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">- Monday morning, I started my training. We went to Walmart to start learning the rules and the handling techniques. It was a lot to take in, so I went back later and did some training at home. The trainer was really pleased with our bond, she said we had "the love part down", but Helio needed to see me more as a leader and obey more. That was true at home more than in stores, where I was really impressed with how calm and professional he was.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">It is truly amazing to see the change in behaviour, concentration and obedience when the vest goes on!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I took him for the first time to pick up Cédric at the end of the day. Cédric didn't seem to care too much and Helio stayed on the other side or the backseat. I realized the car was a great place for them to get used to each other, being close but not in contact and without any risk.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I was also really happy to hear that she thought he was giving me looks of adoration and that the bond was really strong. I had never really thought about that being a problem, but I supposed a dog has a personality and he could have not liked us... She even seemed to worry about whether or not we like him. Again, it never crossed my mind that we might not, but again, who knows, sometimes the chemistry is not there. In this case, she chose him perfectly and we love each other :D</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">- On Tuesday, we went back to Walmart and added restaurant rules and behaviours to our practice. For hygiene and safety reasons, service dogs have to be tucked under the table, cannot be touched (verbal praises only), and are not allowed to eat or drink anything!! Not their own food, not what falls on the ground, NOTHING! Not even sniff. Labs being very food motivated, I thought this would be horribly hard, but he handles it very well. He lies there and sleeps. Again, colour me amazed. Still I made sure to practice the "leave it" command at home as I thought this would probably the hardest part of the test.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We had also scheduled to go to the restaurant that night, just Helio, the trainer and me, to introduce him to the members of the Kiwanis club who funded him and allow them to ask questions. They were almost shy at first, but in the end, I'm really glad we did. It was great to hear the trainer explain everything, I learned a lot too!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">- Wednesday, we visited the pet store for a Kong and some training treats, went back to Walmart and McDonald's, but also took him to the dentist. In the trainer's experience, it is better for the dog to be familiar with the place and people before bringing him along with Cédric. She thought he might be protective of Cédric when seeing a stranger put his hands in his mouth... I would have never thought of that, but now, I'm trying to keep in mind that whenever we do something new, it would be good to get the dog used to the place before. I'm sure eventually, we won't have to as much, but while the relationship both with me, his handler, and with Cédric is new, it seems like a smart idea.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">And Wednesday night is also when the magic happened!! The #1 reason we got him in the first place was to allow Cédric a little more freedom and make our lives a little easier when walking together. As it is, we are always afraid he will take off and have him either in the stroller or in a vice grip. He likes the stroller, but it makes any outing a very passive activity for him, and he HATES the grip and tends to flop to the ground and refuse to move.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">So the trainer got a harness at Walmart, one of the ones with a plush animal on it, and replaced their weak "leash" with a strong tether which attaches to Helio's vest. Cédric's is a grey elephant for which I still need a name (I'm weird that way, I like to name everything...). I put it on him the day before, expecting him to absolutely hate it, but he kept it on for a couple of hours with no complaint! So Wednesday night, we tethered Cédric to Helio and went out in the neighbourhood. It took us a few meters to figure out who should walk where. Well, Helio knew exactly what to do, but it was new for Cédric and I. I expected that to fail as well... but it was amazing! Cédric loved it, he seemed to feel free yet secure. We walked more than we ever have without him dropping to the ground or complaining. It was a very happy moment for us all (the trainer says it is always magical and she can't help having a huge smile on her face every time it happens!).</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Here is what it looks like when we walk tethered. I've decided to call it "tandem walks" (told you I rename everything, I just don't like "tether" as much):</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">- Thursday saw more of the same (store, restaurant, work at home) to be really ready for our test on Friday. Helio also met Dave's parents, as they often watch over Cédric at our house and therefore needed to know the basic on handling him. This revealed that he indeed is very cautious and very attached to me. He was very protective of me, staying close, and growling and barking. As they are both very nice people and animal lovers, it was a surprise. The trainer suggested going to their house with him, so that he can meet them in a more neutral place than the house he feels protective of.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">- And Friday was already the big day. After only 5 days together and 4 of training together, we had to take our test. Helio did very well, only fighting me a little when it was time to "down" at the cash register. But he didn't run after the ball the trainer through in his way, or get spooked by noises. He even did very well at two things we hadn't practice much at all: "a stranger hold" (I had to leave him with someone else and tell him to stay) and a "recall" (I had to make him lie down, move away, then call him to me). He also basically had a French frie (French fry? Who eats just one, lol) thrown at his face and moved around his body and he didn't flinch! The trainer took notes the whole time and made no comments. I felt it had gone well, but who knows, right? She didn't say anything and gave me an envelope saying the answer was in there. It contained Helio's certificate, plastic tags with his photo and his name which say that he is Cédric's service dog and some letters on their letterhead that explain that he is allowed everywhere (in case of trouble in a public place...).</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We had passed and the most encouraging part is that the trainer said that even if some things still had to be perfected, she felt confident we were a good team and had put in enough work and effort. She thought she was leaving Helio in good hands, she had seen promising things between him and Cédric and she knew I would put in the necessary work to keep Helio certified (we do have to retake the test yearly).</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We invited the trainer for a very relaxed celebratory supper Friday night, and she left very early Saturday morning. I honestly was sad to see her go, because I liked her very much and we had very interesting conversation. But also because I was worried about not keeping our team sharp, about messing things up or not knowing what to do. But she is only a text, email or call away and told us we can always ask questions. We've been on our own since!</span></div>
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<u><span style="font-family: Trebuchet MS, sans-serif;">The "Cédric-Helio" bond:</span></u></div>
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<span style="font-family: Trebuchet MS, sans-serif;">As I said, at first Helio was a little scared and overwhelmed by Cédric. He is not anymore!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The car was a great tool to get them used to each other. Day 1, Helio stayed far and Cédric paid no attention, day 2, Helio turned around and Cédric looked and reached down a couple of times, and since day 3 Helio snuggles right beside the car seat, often putting his head on the armrest and Cédric smiles, reached down to pet his head, nose, or ears. It's a very happy sight:</span></div>
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<a href="http://4.bp.blogspot.com/-itrXSznFZho/U6nnBcfEEbI/AAAAAAAAHM4/qF0hu4zFhfg/s1600/helio_cedric_car.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="http://4.bp.blogspot.com/-itrXSznFZho/U6nnBcfEEbI/AAAAAAAAHM4/qF0hu4zFhfg/s1600/helio_cedric_car.JPG" height="400" width="300" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">At home, as Helio relaxed, he started being very comfortable around Cédric and seeking him for play. The hardest part is just teaching him not to use his teeth (made hard by the fact that Cédric LOVES to put his hands in Helio's mouth) and to stay away when he is too excited. He is generally a very calm dog, but he is only 18 months old and gets excited a couple of times a day.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Cédric is also more and more tolerant of Helio. At first, he had many moments when he did not want Helio coming close. He was basically telling him to get out of his face! But as time passes, I see less and less of these moments. I also see an increase in him looking for Helio's company, laughing when he is around, and trying to interact.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I try to facilitate these interactions by making sure they stay positive, keeping Helio away when he gets too excited, making sure he uses his mouth as little and as gently as possible, telling them both when they do things right. And I absolutely love seeing them together. Look:</span></div>
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<a href="http://4.bp.blogspot.com/--fFFp1YlHyk/U6nqTDIrlNI/AAAAAAAAHNM/ypDmpvMe7vk/s1600/Helio_cedric_onbed.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="http://4.bp.blogspot.com/--fFFp1YlHyk/U6nqTDIrlNI/AAAAAAAAHNM/ypDmpvMe7vk/s1600/Helio_cedric_onbed.JPG" height="300" width="400" /></span></a></div>
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<a href="http://1.bp.blogspot.com/-suJ3GqNSFyQ/U6nqT077l8I/AAAAAAAAHNU/14Lf2xt7ncA/s1600/Helio_cedric_onpillow.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="http://1.bp.blogspot.com/-suJ3GqNSFyQ/U6nqT077l8I/AAAAAAAAHNU/14Lf2xt7ncA/s1600/Helio_cedric_onpillow.JPG" height="400" width="300" /></span></a></div>
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<a href="http://4.bp.blogspot.com/-0lb0Tl7C0CE/U6nqV0wXgSI/AAAAAAAAHNc/U3DKGczfq-c/s1600/Helio_cedric_redchair.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="http://4.bp.blogspot.com/-0lb0Tl7C0CE/U6nqV0wXgSI/AAAAAAAAHNc/U3DKGczfq-c/s1600/Helio_cedric_redchair.JPG" height="400" width="300" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">While on the bed, I even saw Cédric get up on his knees and give Helio a great big hug around the neck :D</span></div>
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<u><span style="font-family: Trebuchet MS, sans-serif;">The "effects":</span></u></div>
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<span style="font-family: Trebuchet MS, sans-serif;">As I said, the main goal was to keep Cédric safe with tandem walking. It does make us feel safer and and seems to give Cédric a sense of both freedom and security.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">But people also report other "effects" on their children and we were anxious to see what would happen for our little guy.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The one I was most curious and hopeful about was sleep. I've read many times that the presence of a dog helps kids with sleep disorders or difficulties.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">There are many factors that can affect Cédric's sleep but since Helio has been sleeping in his room, Cédric has slept well. He has not woken up in the middle of the night and has woken up very early much less than he used to. Of course, as I write this post (which I have done over the course of more than a week) he has had a series of 3 days where he woke up really early, but it is still better than it used to be.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The amazing thing we have discovered though, is that when he's asleep, noise does not bother him much at all. We thought he was a very light sleeper and have always been really careful not to make any noise once he slept. But with Helio, we sneak him into his crate when we go to bed, a couple hours after Cédric. Helio is very happy to go to bed because he gets a small treat and therefore wags like crazy, hitting the wall, the door, the metal crate, and making an incredible amount of noise. He then proceeds to do that strange floor scratching before lying down thing that dogs do. I still wonder what the evolutionary purpose for that is (warm up the spot, dig, release smells, ...?) but the one thing I know is that it is extremely loud. And so far, Cédric does not react to any of it whatsoever. One time he did sit up and reposition himself (my heart stopped for a second) and he went right back to sleep.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Helio has also barked and cried in the early morning when hearing us move around, and again, it has never woken up the little dude!!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I have not noticed a strong calming effect. Others have reported that the presence of the dog was soothing and calming and I can't say that we have really noticed improvement in that department. Cédric still has moments of high activity. He has been very happy though and we have seen few tantrums, so it might be that having the dog around improves his mood.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We also were surprised to notice an increase in language and vocalization. Cédric is pretty much non verbal. There are very few words he says consistently. But when Helio joined our household, we noticed a definite increase in the amount of vocal expression and even an effort to produce more different sounds. We're not talking about a miracle where he started talking in full sentences, but still we love hearing his voice and any move in the right direction is great.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">And the connection was kind of confirmed for me by the fact that after only 5 days, Cédric said Helio's name! And he's been saying it often since. It may not be obvious to anyone, but to us who know him and are used to his repertoire, it is, and it makes me very happy. My favourite part is a resurgence of "je t'aime" (French for "I love you") which he used to say but had not said in a long time :D</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">And of course it has provided companionship. Cédric has an extra loving being to interact with. He laughs when Helio is playing, he goes to him and puts his hands in Helio's mouth, he puts his feet on him and rubs the fur, he plays with his ears in the car, ... He has a friend!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">And so do I... I am so happy to have a furry friend back in the house and to get to pet him and cuddle.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Helio has been trained to provide deep pressure to calm Cédric and ground him. It seems a little too early in their relationship for it to be applied, though. Cédric doesn't seem to love when Helio is too much "on" him.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I have been enjoying it however. I love the cuddles and I have noticed that his leaning against me or sleeping on my feet calms me down.</span></div>
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<u><span style="font-family: Trebuchet MS, sans-serif;">The work in progress:</span></u></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I don't want to give an unrealistic picture of this experience. Though it has been largely positive, there are aspects that have surprised us and that we have to adapt to or work on.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">First and foremost, due to the distance, Helio was trained away from us and our bonding time and my own training was very short before the trainer had to leave. There are therefore a few things we need to work on and correct before they become problems.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Helio is amazingly professional when his vest goes on. He listens very well, he is quiet and discreet, and he pays careful attention to Cédric. But I have noticed that he gets spooked in entrances (double doorways in stores, malls, supermarkets, restaurants), at which point he pulls quite hard and sometimes panics and tries to in whichever direction. And he acts in a similar way in busy parking lots and open areas with large crowds.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">So we have to work on that, expose him to that kind of situation a lot and make sure he calms down and is able to stay focused, especially if we ever want to be able to tether Cédric to him.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">There are a few other things, but most of them are minor: the barking in the crate in the morning, a certain fear of visitors (especially men), jumping in the house or on me when playing (he is still young after all), getting a little too excited around Cédric and "nipping" at him (it's a playful nip, with a very gentle mouth, but it still would be better if he didn't).</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Oh, and the hair! So much hair! He is a lab, need I say more.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I've invested in a better swiffer and if it pushes me to vacuum a little more often, it won't be a bad thing. But we are rethinking the choice of dark floors and black clothes, lol.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">There is one aspect I did not fully expect: the attention from others. I knew it would attract attention, of course. I just did not realize how much and some of the reactions I would get.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Most people are respectful, tell their kids they can't pet him, say that he's cute, etc. I did notice that a lot of people say it loudly enough for me to hear, but when it's positive comments I don't mind at all.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Then there are the people that are also very respectful, but want to know everything (how old he is, what breed, what kind of service dog he is, where he was trained, whether he's in training, ...). I don't mind sharing, but sometimes I'm in a hurry and it's time consuming. And I'm thinking it will eventually get old... I read somewhere that someone has created a business card for her service dog and hands them out when people have questions and I like the idea!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">And then there's the few but noticeable interactions. Some people ignore the vest and pet him, one even told me she knew she wasn't supposed to and was breaking the rules as she pat him on the head. Some people pry to find out what type of service dog he is, asking me if I'm training him for someone visually impaired (which I am obviously not), and one going as far as grabbing the card on his vest then the tag around his neck while I was talking to someone else, and exclaiming "ah, autism!".</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Finally, there was that one woman at the dentist... It was the first time I took Helio in public tethered to Cédric. He panicked in the doorway and tried to turn around, and Cédric fell on his bum. She was in the entrance with us, behind us and just seemed horrified and from that point, gave me dirty, judgmental looks...</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">So I have to get used to all of that and remember to plan for extra time and extra patience!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">So we find ourselves a family of four again. Dave is surrounded by 3 dark blonds (the trainer even mentioned that Helio and I had the same hair colour), and I am surrounded by my 3 guys (which is a departure as both previous dogs were females).</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">And one thing makes me absolutely convinced that Helio fits right in, that he is a true Gervais: the gas! Whether by nature, because of the stress, or because of something in his diet, Helio farts. He farts often, loudly and the stink is unbelievable. In public, it can be a little embarrassing...</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">At least, now, we can blame the dog ;)</span></div>
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Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com0tag:blogger.com,1999:blog-3610300044617515069.post-30855283399779018132014-04-30T15:38:00.000-04:002014-04-30T15:38:00.244-04:00Today is not the last day<div style="margin: 0px;">
<span style="font-family: Trebuchet MS, sans-serif;">Yes, it's the last day of the month of April...</span></div>
<div style="margin: 0px;">
<span style="font-family: Trebuchet MS, sans-serif;">Sure International Autism Awareness was only April 2nd and autism awareness month in Ontario is only in April.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">But for those of us touched by autism (and these days, that's a lot of people), it does not end at midnight on April 30th.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">So tomorrow and all year round, please keep talking about it and raising awareness, keep making efforts to improve tolerance and be kind and patient, and just keep us in your hearts and prayers. Your support makes all the difference :D</span></div>
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Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com0tag:blogger.com,1999:blog-3610300044617515069.post-45902741723315531022014-04-27T13:42:00.001-04:002014-04-27T19:58:38.808-04:00Impromptu<div style="text-align: left;">
<span style="font-family: "Trebuchet MS",sans-serif;">I am not a spontaneous person. I like things planned way ahead and prepared for carefully. But recently, we did something that really goes against my nature and it paid off, in a big way: we decided to drive down to Florida at 7ish one evening and were gone by 10am the next morning!!!</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">First let me tell you what triggered this decision. Cédric had a pretty hard winter. We're demanding of him both at IBI and at home and the winter has been so hard, so long, so cold! By early March, he was miserable at least half the time on most days, and he's usually our little ray of sunshine, with only short bursts of unhappiness. And of course, that rubbed off on us. Both Dave and I were getting frustrated and tired. All three of us had major cabin fever.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">And on Wednesday March 5th, right before March break, I lost my mind! Just a little, just for a short while; but in a real way, I felt that I was losing control. I first got mad due to a toilet training failure event (I'll spare everyone the details), then something snapped and I lost all feeling. I started talking slowly, in a very monotonous voice, my eyes felt like they were wide open, too wide, but I couldn't do anything about it, and I was in slow motion. I suddenly felt exhausted and the smallest movements were hard.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">In my mind, though, I was wide awake and fully rational. I kept telling my self that something weird was happening and that I had to snap out of it, but I couldn't.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">When Dave came home, a couple of hours later, I immediately warned him. I didn't want him to think I was mad about something, acting passive-aggressive for something he might have said or done. But I knew I wasn't myself and that he would notice something was wrong.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">We'd talked/joked the week-end before about going back to Florida during March break. But we had just come back from a Xmas vacation there, and we were leaving for Portugal in April. So between the expensive plane tickets, the short amount of time available and the fact that Dave would need time off work again, we had concluded it wasn't possible.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">We did have a medical appointment in Southern Ontario, but we were just going to drive down, spend a day in Toronto and drive back.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">But on that Wednesday night, finding me in that weird state, Dave suggested that we cancel our appointment, take off, and just drive to Florida. He would have to miss work for over a week, I would have to cancel a next day supply teaching assignment, we would have to change the medical appointment to a phone consult. It would also mean packing last minute, with no preparation. And most of all, it would mean 3 long days of driving and 3 of driving back for only 5 days there.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">But it would take us out of the house, out of a Timmins, out of winter, out of our routine... And we all needed out. Plus if all went well, it would allow us to get there on Dave's Dad's 60th birthday and surprise him.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">Normally, knowing myself, that would have freaked me out, and I would have said no. There were too many implications and not enough time to prepare. But I was not myself! At first, I was unable to decide, or even care. I told him to do what he wanted and that I would just go along with whichever plan. We had to go out to the library for a half hour of reading to the dogs, and the need to appear normal and act appropriately with relative strangers allowed me to snap out of it! And at that point I realized we needed the break, one way or another, and I agreed.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">It goes against my nature, in a big way, because so much could go wrong and we were so unprepared.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">I truly believe the homeopathy treatment I have been doing (more on that later) and the journey and growth Cédric's diagnosis have forced on me allowed me to say yes.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">I was most worried about having Cédric strapped in his car seat for three days in a row, twice. But to that, Dave's argument was "miserable at home or miserable on the car makes no difference and at least we'll have 5 days of break".</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">So we put Cédric to bed and started packing!</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">Dave called his brother to ask if he could handle another week of work without him. Here I want to say how much I appreciate the fact that Dave is self-employed and that his partner is his understanding brother :D</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">He then called his Mom to make sure we could show up at their house last minute and pull off a birthday surprise for his Dad. I am also thankful for very inviting parents who are always welcoming :D</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">We packed our summer clothes, packed food in the cooler (Cédric's limited diet makes eating on the go challenging), we entered the destination into the maps app of Dave's iPhone and we just left.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">I still can't quite believe how well everything went.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">Soon after we left home, Cédric relaxed and became calm and happy. He started just making happy noises, chitchatting in his own way, and smiling. He stared contentedly out the car window. I don't know if he understood we were leaving, if he could just tell that this wasn't routine and that was enough, or if he felt our tension release, but he had not be this happy and relaxed in a long time!</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">From there, it was literally unicorn and rainbows :D</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">The weather was amazing, all the way down, 2800km of nothing but sunshine. The maps app did an amazing job, avoiding all traffic, bypassing big cities, taking us all the way there without a glitch. We found motels whenever Cédric got uncomfortable in his seat, all of which were clean enough and right by the road to not lose any time (and in the US, really cheap!).</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">We got there when we had planned, we surprised Grand-Papa, we went to Disney (parks, water parks, shopping), we soaked up the sun.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">We didn't really plan, we stayed flexible and went with the flow and it agin paid off. When you plan too much, things that go wrong are more upsetting and seem more dramatic. I enjoyed myself tremendously, taking things as they came, and time seemed to go slower than it usually does for me on vacation. I wasn't ahead of everything, trying to plan the next step. I was in the moment!</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">Dave also really a enjoyed the vacation, saying he didn't want to leave because things were going so well he wanted them to last a little longer.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">And I think Cédric really enjoyed it too. First he was thrilled to not have to wear his winter things. And he was so happy to be outside. Despite waking up at 3am both days we were going to DisneyWorld, he stayed awake there and enjoyed it. The rides, the music, the colour, the atmosphere... he really loves it there!</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">He was just as much of an angel on the way back. The road went equally well, the weather was just as good.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">And Cédric has been much better since! He is sad and upset less often, and it doesn't last as long.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">Of course, there are consequences. He slept in our room for 11 days, so he is now refusing to go to bed alone in his room. But we are now relaxed and able to take the challenges patiently and work on them.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">I think this taught me three things (as I write, I was going to say one, then two, and realized it was three...so it might have taught me much more and I don't realize it yet, but three is pretty good for a quick March break).</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">First, I learnt I have limits (which I knew), and what to watch for so I don't get depressed or have an nervous breakdown.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">Second, I learned that routine is not always the most important for Cédric, and that sometimes he needs a real break form his everyday too.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">Third, and most important, I learnt that planning everything and obsessing about it is neither healthy, nor productive. I still like to be prepared for things and plan ahead to some degree. But now, I try to take it a little easier than I used to.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">As a picture is worth a thousand words, here are a couple of photos from the trip:</span><br />
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Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com2tag:blogger.com,1999:blog-3610300044617515069.post-58325963547641857952014-03-03T10:15:00.000-05:002014-03-03T10:15:18.687-05:00Open doors<span style="font-family: 'Trebuchet MS', sans-serif;">In January, just after our vacation and turning 6 years old, Cédric learnt to open doors.</span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;"><br /></span>
<span style="font-family: 'Trebuchet MS', sans-serif;">He's been able to open the longue ones that just tilt for a long time, but until now he did not know how or was not capable of turning the round ones. And by chance, when we built the house 7 years ago, we chose all round door handles.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">In January, with no effort on our part, Cédric just found the trick and opened the bathroom door. We figured it might be luck, almost an accident, especially considering there was a child security protection on it, which makes it harder to turn. But in the following days, he kept opening doors, with or without the child proof handle. It is now an acquired skill that he uses daily.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">As far as development goes, it's an achievement! He learnt to do something useful in everyday life. Not only that, but he learnt it on his own, without help or example, which shows a certain amount of problem solving and perseverance. It's a motor skill that required coordination (he usually uses both hands). Any progress is a victory and we are very proud of him.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">On a symbolic level, it's also quite significant. It opens doors for him!! Literally :D</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">But...</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I must admit it's a skill we were specifically avoiding teaching him because it has important consequences.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Now that Cédric can open doors, we have to always have ears and eyes on alert to make sure he doesn't do something bad, or put himself in danger.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">He could go in our room and play with his Dad's iPad or my Kobo, or find my jewelry. He could go in the bathroom and get wet in the tub or the toilet. He could go in the rooms where I put all the things I don't have time to actually put away or don't know where to place and make a real mess of my organized mess...</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">But more importantly, he could burn himself with water in the bathroom, hurt himself with tools in the storage under the stairs or even get out of the house and escape! After all, even though he's never done it, the handle on the front door is round too.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">So our alert level has gone up, and the amount of necessary interventions to keep Cédric sage and our house in a reasonable state has increased a lot. In other words, we're more stressed out and we have less rest time!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">But the worst is at night!! Cédric has been having sleep problems for a long time and he regularly gets up at night at various times (for a long time it was around 2 or 3 am, lately more around 4 or 5 am). Before, the big advantage was that he was "stuck" in his room. Not knowing how to open doors, he stayed in his room and played on his bed, in his tent, and with his books. We were able to stay in bed, knowing he was safe, and even if it wasn't great sleep, it was physical rest. Now that Cédric can open his door, the second he wakes up I'm on alert, waiting for the telltale sound that tells me that Cédric is out and that I have to get up as fast as possible and go take care of him. When he gets out of his room at night, he's really in danger: fall in the stairs, eat something he shouldn't, hurt himself, or even open the front door and get out. Yes, we have an alarm; yes, he would have to open the lock first; yes, he usually goes to his red chair. But Dave has once before found him in the entrance, at the front door, trying to open it!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">So since January, night waking has taken a new magnitude.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Goes to show, everything is double-edged...</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I'm still happy Cédric is making progress and shows us he's capable of learning. I just would have preferred he did it by potty training himself all at once (go re-read <a href="http://cedriconedayatatime.blogspot.ca/2013/07/now-thats-shitty.html">my post about poop</a> and draw your own conclusions as to what the potty training that is underway and the wearing of underwear rather than diapers has done to our daily life!!).</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I won't leave on a shitty note (;)), I will say that as always, Cédric is an agent of change in our lives and prevents us from settling in a boring routine. I'm on my way to clean up the spare bedroom I have used as storage for random things. It was supposed to be his playroom upstairs and I just let it get out of hand, get very messy, and become inaccessible to him. But since last week, every day, multiple times a day, he uses his magical new skill to go in there anyways and I have promised him and myself that it would be his playroom before March break (next week...)!</span>Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com0tag:blogger.com,1999:blog-3610300044617515069.post-53326825802494991822013-12-10T17:40:00.000-05:002013-12-10T17:40:00.008-05:00Thought of the day: never give up <span style="font-family: Trebuchet MS, sans-serif;">Lately, a few little things have reminded me that we can never give up on our kids, never stop trying to push them ahead and expose them to all sorts of things. The fear of our attempts going wrong and failing, or simply of our efforts being wasted and useless is usually what makes me "give up".</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Let's face it, we're tired! And organizing anything takes planning and efforts. So when we think it's useless because Cédric doesn't care, or fear it will go wrong, we opt out to avoid wasting our time and energy.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The best example both of that tendency we have and of it being a mistake is Halloween.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Last year, we gave up and boycotted it. The reasoning was: Cédric doesn't understand the concept, he tends to hate hats and weird clothing, making costumes difficult, and he can't eat anything the neighbours give anyways!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">This year, our early conversations about Halloween were leaning towards doing the same thing and staying home. But on Sunday October 27th, we realized we were being lazy and decided we wanted to do Halloween. So off we went to find a costume, buy candy for the trick or treaters, ask Dave's parents to come over and give out candy while we went trick or treating and decorate the house. And then we decided that if we were doing this we should do it right, and we bought Cédric the chips he can eat and wrote a letter to our neighbours explaining that he can't eat anything but these chips, that he won't answer them, or say "trick or treat", or maybe even look at them, but that he does like being around people and other kids and that he LOVES chips and will enjoy getting them. We described his costume so they could recognize us and asked them to give him the attached bag of chips. We figured it would be easy for them to do that, everything was provided and if they didn't want to, we told them that was okay too.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">I am so glad we made the effort!! The neighbours were all very supportive, friendly and generous. But most importantly, Cédric seemed to enjoy it. He wore his astronaut costume, including a helmet, all night. He walked door to door to 23 houses without complaining (much). He showed excitement at getting the chips. In short, he had a real Halloween! Had we been lazy we would have missed out on a great experience.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">And it happened again today. As we're spending Christmas away, I haven't decorated the house on the basis that Cédric doesn't understand the concept. But today when I picked him up, there was a Christmas tree that had just been decorated. Cédric saw it right away, approached it, touched the branches and looked at the light, especially the big lit up star at the top! And now I feel lazy for not decorating and I'm planning on taking out our small LED tree and asking his grand-mother to have a tree in her house during our holidays!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">All this is why I don't regret failed attempts either. On Saturday, we went to the library hoping to listen to Christmas stories and songs. Cédric would have none of it and rolled on the floor and screamed, so we left. Was it embarrassing to have some people stare? Sure. Was it disappointing to have gotten dressed and gone there for nothing? Sure. Will it stop me from taking him to a Christmas play at the high school tonight? No. If it goes badly we'll leave and if it goes well, we'll have exposed him to another fun activity in the community!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I just don't want him to miss out on anything and limit him and his growth because I'm lazy and pessimist...</span>Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com0tag:blogger.com,1999:blog-3610300044617515069.post-25800625413678734712013-08-13T20:04:00.003-04:002013-08-13T20:15:32.961-04:00Neurotypical moments<span style="font-family: "Trebuchet MS", sans-serif;">We say autism is a spectrum, and it's absolutely true, there are degrees to each symptom, and degrees of severity in general, and there are even variations between the symptoms that are present at all and the associated diagnoses. I guess we apply this term to autism specifically because the variations are really wide compared to the majority of diseases, disorders, conditions, etc.</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">But the neurotypical population (which people who don't know this term would call "normal people") are on as wide a spectrum! There are degrees from one person to the next for each physical or personality trait: physical strength, intelligence, deftness, shyness, etc. And the line between some neurotypical people and some autistic people is sometimes very thin...</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">Although maybe it's just the "autism Mom" in me seeing autistic traits everywhere! And spectra! LOL</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Lately, I discovered a new spectrum. As parents of an autistic kid who has delays compared to his peers, we're always watching for "neurotypical moments" where Cédric does something age appropriate. Lately he's done two: one was beautiful, poetic and sweet, the other ... not so much! </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">A few days ago, the weather was perfect for a car ride (which we do quite often to pass the time) with the windows open (which we almost never do). Usually we use the air conditioning to avoid wind, drafts, and because in Timmins, we have no mid-seasons where the weather is perfect for opening the windows. Also, and probably more importantly, I'm always worried Cédric will throw something out the window ( a shoe, his sippy cup, his Ipad). But in this case there was nothing for him to throw, it was sunny and cool and I decided to open his window. At first, he looked at the window. He looked like he was analysing the colour difference between what he saw through the window and what he saw directly, above the window. A fairly typical behaviour for him and typical of autism: intense observation. But quickly he put his hand above the windew, and felt the outside air, and he spent the next twenty minutes with his hand outside, cupped to feel the wind and "grab" the air". A totally neurotypical behaviour, and an absolutely adorable one! Had I not been driving, I would have taken a picture :D</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">About two months ago, he had another moment, equally neurotypical, equally appropriate for his age, also in the car, but much less poetic. I saw him in the mirror put his finger in his nose. I had seen him do that in the past, but usually it doesn't lead to anything, he doesn't manage to get anything out of there. This time, he pulled out a nice booger. I turned around to wipe it with a tissue and saw Cédric put his booger in his mouth and eat it with impressive dexterity. As for me, I ended up with very mixed feelings of pride and disgust and a huge dilemma between telling him it's dirty and not to do it again, or praise him for his deftness :D </span>Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com0tag:blogger.com,1999:blog-3610300044617515069.post-8204702877902938452013-07-15T16:43:00.002-04:002013-07-15T16:43:39.517-04:00Now that's shitty!<span style="font-family: 'Trebuchet MS', sans-serif;">As promised in my last post, it's time we talked about poo :D</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br style="background-color: white; font-size: 13px; line-height: 18.90625px;" />One of the original goals of this blog was to share our experience regarding Cédric's digestive and intestinal issues and their side effects. Even thought it might seem excessive to some, or at least disgust them, Cédric's feces are a part of our everyday life. I have therefore wanted to address them for a long time. But last Wednesday's events, July 10th 2013, lead me to believe it's time...<br /><br />Since he was born, Cédric has never had normal bowel movements. He's always varied from constipation to diarrhea, which should have been a hint to us. But in the spring of 2011, things deteriorated and made us take action. He was three and a half years old and wasn't potty trained, so we had already changed more than the average amount of dirty diapers, and he started having diarrhea.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Diarrhea of gargantuan proportions! Diarrhea 3 to 5 times a day, everyday! Diarrhea that was creamy at best, most of the time completely liquid! Diarrhea that was orange or red! Diarrhea that smelled like acrid vomit!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">I'll discuss later, in another post, the causes we identified and the steps we took to remedy to it; I focus here on the our "shitty" daily life.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Cédric is now five and a half and is still not toilet trained. He also has the unfortunate habit of pooing in the bath. Water relaxes him and he feels free without a diaper and I don't blame him. But depending on the smell and consistency of the day, it can be more or less fun to clean up. He also had a phase where he would put his hand in his diaper right after a bowel movement, so we had to clean some poo from his computer keyboard, the floor, our clothes, our arms, hands, ... (knock on wood, he hasn't done it in a while). During the period of intense diarrhea, it wasn't rare for the pjs or even the sheets to be full of it in the morning. The large ones during the days often overflowed and dirtied his clothes. We even invented a word: a "cacastrophe", and songs with colourful lyrics.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">And last Wednesday, we reached a new level in our experience with poo. In the bathroom of the school where Cédric goes to IBI, he found a small brown chunk. Despite his therapist holding on to him, he grabbed it. She took his hand to take the chunk away, but considering the nature of the thing, her hand slipped and Cédric ate poo! Another student's poo! His therapist washed his hands, his arms, his face, inside his mouth... even his hair was wet and the senior therapist thought he had stuck his head in the toilet :D</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">When they told me, I said I'd rather that than dairy (to which he is highly intolerant) and they seemed relieved that I have a good sense of humour! And my mom got a good laugh when I suggested that if the child from whom he ate feces has a better intestinal flora than he does, it might even work as a fecal transplant (a medical procedure unfortunately not very common but that we have considered, which consists in recreating the intestinal flora by introducing healthy feces) ;)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I'm writing all this because someone should!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Not only do Dave and I change a phenomenal amount of diapers (and "play" in shit regularly), but it is a daily topic of conversation.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">When you have a child with sick intestines, every diaper counts. Even though we fight as to who will have to go change the diaper (and I should say that I am very lucky to have a husband who changes a lot of diapers, the lucky one who doesn't have to go always check how the contents were. When he's out of town, Dave asks me if Cédric had bowel movements and how they were. We discuss consistency, colour, odour, quantity...</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">At some point, Dave even described Cédric's stools as strangely not constipated, but not diarrhea. He said they were formed but not hard, of average size, that they didn't smell too strong... It didn't even occur to him that they were NORMAL!! And when this happens, even thought the word escapes us, we rejoice at the news of normal poo!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">And there you have it! I hope I didn't gross everyone out, and mainly that nobody decided to read this post during a meal...</span>Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com0tag:blogger.com,1999:blog-3610300044617515069.post-59189125962977862512013-05-20T19:26:00.000-04:002013-05-20T19:26:42.773-04:00The media, the Internet and the face of autism<br />
<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">Are you intrigued? It sounds like the title of a thesis, doesn't it?</span></span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">It is in fact just a small personal rant! </span></span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">Autism is talked about more and more in the media and social media. That's a good thing of course, the intent being to make the general public more aware and to promote acceptance. Medical documentaries or the sharing of scientific articles is very important for that, as they help people better understand the disorder and the magnitude of the spectrum.</span></span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">But there seems to be a tremendous amount of videos and articles that show children or adults on the spectrum who have become astrophysicists, have written books, have invented revolutionary things, etc.</span></span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">And it annoys me!</span></span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><span style="font-size: small;">Please<span style="font-size: small;"> don't<span style="font-size: small;"> misunderstand<span style="font-size: small;">, I'm not agai<span style="font-size: small;">nst the whole <span style="font-size: small;">con<span style="font-size: small;">cept! Of course, it's important to share these achievements, these success stories, in order not to limit the imag<span style="font-size: small;">e of autism to that of Rain Man. And obviously, for any parent, or<span style="font-size: small;"> member of the family of an autistic child, it's an impor<span style="font-size: small;">tant</span> source of hope which allows not to think of this d<span style="font-size: small;">isorder a<span style="font-size: small;">s a sentence and to remain po<span style="font-size: small;">sitive in order to gi<span style="font-size: small;">ve <span style="font-size: small;">aut<span style="font-size: small;">istic children all the tools, all the opportunities, and all the support we can for them to rea<span style="font-size: small;">ch t<span style="font-size: small;">he<span style="font-size: small;">ir potential.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span> <br />
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<span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;">But beyond the hope it provides, I <span style="font-size: small;">find it a very <span style="font-size: small;">limi<span style="font-size: small;">ted image of the spectrum that is autism. It is one of the ends of the spectrum, t<span style="font-size: small;">hat of succes, of high-functioning, of higher-than-average intelligence. And it is true that there are many<span style="font-size: small;"> people on the spectrum <span style="font-size: small;">who are like that. But there are al<span style="font-size: small;">so many <span style="font-size: small;">autistic peopl<span style="font-size: small;">e who r<span style="font-size: small;">emain non-verbal, <span style="font-size: small;">or who are never able to funct<span style="font-size: small;">ion in society<span style="font-size: small;">, or who also have an intellectual di<span style="font-size: small;">sa<span style="font-size: small;">bility.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;">The result is that many people, sometimes <span style="font-size: small;">f<span style="font-size: small;">riends and family</span></span>, think that all children on the spectrum <span style="font-size: small;">have a<span style="font-size: small;"> brilliant future. It seems to me that it could give false hope to some, or justify <span style="font-size: small;">a certain degree of de<span style="font-size: small;">nial of <span style="font-size: small;">what the <span style="font-size: small;">reality is.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;">It is not a good representation of the <span style="font-size: small;">scale of the spectrum and I think it can even damage the <span style="font-size: small;">inte<span style="font-size: small;">gration and a<span style="font-size: small;">ccepta<span style="font-size: small;">nce efforts by giving <span style="font-size: small;">a f<span style="font-size: small;">alse image or at least a limited one.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span> <br />
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<span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;">On my blog<span style="font-size: small;">, in any ca<span style="font-size: small;">se, <span style="font-size: small;">you can expect to hear about Cédric<span style="font-size: small;">'s successes, and if he becomes an astrophysicist or discovers a way of s<span style="font-size: small;">quaring the <span style="font-size: small;">circle, I p<span style="font-size: small;">romise <span style="font-size: small;">to shout it on the rooftops. But you can also expect <span style="font-size: small;">to hear about intestinal issues, language delays, specialized classes and even speciali<span style="font-size: small;">zed programs, sensory needs, ... an honest representation of our everyday life.</span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;"><span style="font-size: small;">In fact, <span style="font-size: small;">the next post wi<span style="font-size: small;">ll be about poo<span style="font-size: small;"> :<span style="font-size: small;">D</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span> </span>Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com1tag:blogger.com,1999:blog-3610300044617515069.post-10928260676791763622013-02-23T20:12:00.000-05:002013-02-24T11:25:16.355-05:00Dog tales part deux<span style="font-family: "Trebuchet MS",sans-serif;">In life we make many attempts. That's how we have success and make discoveries, but inevitably some end up in failures. The trick is to make decisions as best we can and take failures as lessons that help us progress and do better the next time around... Easier said than done!</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">When we chose Schatzie, our mini dachshund, in 2004, our criteria were simple because we were young and had no kids. We took our time, did lots of research, chose a breed and a breeder very carefully. And the result was an amazing success. When we chose Kimura the shiba inu, in 2012, however, our criteria were more strict and we went too fast and did it under the grief of Schatzie's death. We chose both the breed and the breeder poorly and it was a resounding failure... uh, I mean a valuable lesson!!</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">After months working with Kimura, we had to admit that the situation was not good for anybody and we had to make the very hard decision to find her a new home that would suit her better. Every dog had their strengths and weaknesses, but our main problem, and the one that turned out to be insurmountable, was to make Kimura understand the family hierarchy and to make her accept the fact that Cédric was a master and not another puppy, Cédric being more or less non-verbal and incapable of demonstrating his "dominance" over her.</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">So at the end of January, we parted from Kimura. The decision was very hard to make. I felt guilty for having made the wrong choice in the first place, for not doing more to improve the situation and for making Cédric go through another loss. I also felt cowardly for not trying longer and giving up, sad of losing this adorable little animal and of making her go through this separation and major change, and sad of ending up without a dog (for me and Dave but also for Cédric).</span>
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<span style="font-family: "Trebuchet MS",sans-serif;">I really wanted a dog, because I love them, but also to keep Cédric company as he doesn't have siblings. But I promised myself (and Dave) not to make the same mistake again, and therefore not too make too fast a decision and to do everything to ensure that the next attempt would be a success.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">It's an interesting fluke that in the fall, Dave heard of service dogs for autistic children!</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">After researching the topic, we were considering it even before deciding to re-home Kimura. The advantages reported by professionals, research and the families who have them are incredible! A service dog can provide:</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">- increased security: with the use of a tether, the dog can be attached to the child to prevent him from crossing the street without looking, getting lost at the mall or jumping in a lake or river;</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">- more independence: for the same reason as above, the child can walk a little further with his dog, without always having someone holding on to him;</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">- more socialization: the security and the independence allow more outings and therefore more opportunities to meet people and the presence of the dog is comforting and makes the social contact less scary;</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">- less hyperactivity: for some reason, the presence of these dogs calms children down;</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">- healthier sleep patterns: for those same (metaphysical :) ) reasons the dog, especially if he sleeps with the child, helps to regulate sleep patterns;</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">- reduced stress: in the child and the parents, studies show that the levels of hormones linked to stress lower significantly after acquiring a service dog;</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">- help with sensory needs: the child can pet and hug the dog and some dogs even lie of the children to provide deep pressure;</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">- less tantrums: the dog feels stress before it even manifests itself and calms the child down or warn a parent or adult of an imminent tantrum;</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">- protection against food allergens: the dog can be trained to sniff gluten or casein and to warn the parents of their presence;</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">- immeasurable friendship: even though the connection sometimes takes time to be established, in most cases, an incredible attachment develops between the dog and the child, for some stronger than with anyone else, even the parents, and the dog's name is sometimes one of the first words a non-verbal child utters.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">I'll stop now, but I'm sure I'm forgetting some!</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">After realizing all that, it was difficult for Dave and I to imagine NOT getting Cédric and ourselves a service dog. But that too is easier said than done!</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">One option is too choose a very sweet and calm puppy and do it yourself. Some do it and I was very tempted, but Dave was worried about the amount of work ir represents and the possibility of failing. The second option is send an application to one of the charitable organizations who provide service dogs. There are two who serve our isolated little corner of Northern Ontario: <a href="http://www.nsd.on.ca/">National Service Dogs</a> and the <a href="http://www.dogguides.com/">Lions Foundation of Canada Guide Dogs</a>.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">There are also a few associations in the US who ask applicants to raise funds to finance the dogs before receiving one.</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">And finally, there are simply paying services.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Even though it may seem strange at first, we chose the last option!</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">There are a number of reasons which motivated our choice:</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">- the approval was immediate: for the charitable services, an application must be sent, which can take time to be evaluated and might be refused;</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">- the dog will fully belong to us: the charitable organization retain legal ownership of the dog and can take him back at any point (I'm sure it's rare and justified when done, and I understand that it is a necessary precaution but the idea bothered me a little);</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">- the dog will stay with us for retirement: the charitable organizations can chose to place the dog with someone else and I find the idea really sad;</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">- the training will take place at home: the majority of services require a trip of a few days, without the child, to train whereas with the service we chose, the trainer will come to our hometown to introduce the dog to his new environment and train us;</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">- the dog will be custom-picked: most services, including the free ones, train a large quantity of dogs and choose the dog that works best with each parent or family at the time of training, whereas in our case, the dog will be chosen especially for our needs (size, temperament, etc.) and will also be trained for Cédric's specific needs;</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">- and finally, we will be able to pick the dog's name: it's a trivial aspect but it really matters to me, we already won't be able to pick the breed, the colour, the gender, ... because it is the need for a specific temperament that takes priority, so this will allow us to make the dog ours in one way before he even joins us (and it gives me something to do in the meantime... I already have a small list)!</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">So we chose the <a href="http://www.thamescentreservicedogs.com/">Thames Centre Service Dogs</a>, located in Southern Ontario. The trainer has been working with dogs for a long time but she also has a son on the spectrum which motivated her to train service dogs. She only takes a few families at a time which makes it a faster more personalized approach. She also works with the local Ontario SPCA who allow her to give temperament tests to the dogs who seem to have the potential to become service dogs and to take them if they have the right personality, and the idea that the service dog might be a rescue is really neat!</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">In the meantime, we are dog-less... But before Kimura left, we had started taking a training course with her. When I talked about our situation to the teacher, she generously offered for me to bring Cédric to the end of the class, during the puppies' free play, so that he remains used to the presence of dogs and gets this animal contact at least once in a while! I really thank her for that!</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Considering the length of this post, I'll address the cost and financing of our service dog another time!</span>Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com0tag:blogger.com,1999:blog-3610300044617515069.post-71972218826490295982013-01-19T10:25:00.003-05:002015-05-23T11:25:54.749-04:00Ninja reflexes<span style="font-family: "Trebuchet MS",sans-serif;"> Impulsivity is one of the potential (and common) traits of autism. From a young age, Cédric has had a tendency to all of a sudden throw himself at things, start running in the direction of his choice, grab whatever interests him, ..., without any consideration of the potential dangers for the objects, other people or himself.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">As for me, I've always been really bad at sports. I couldn't catch a ball thrown at me because of lack of coordination, especially eye-hand. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">But ever since Cédric has been with us, Dave and I have developed ninja reflexes!! We can catch a sippy cup before it reaches the ground, stop a thrown hand before it catches other people's food, stop the dude before he starts running into the street. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">The trick? We follow the eyes. Cédric always plans his moves and as that take a little time (connection problems in the brain), if we keep a watch on what he's looking at, we know what he's about to do and we can stop unwanted actions. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">The price? We're always on guard! When Cédric is with us (and in general, because it has become a way of living and it's hard to stop), we live in a state of alert with all our sense on the lookout for the merest sign of danger. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">The benefit? Ninja reflexes!!</span>Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com1tag:blogger.com,1999:blog-3610300044617515069.post-87940483047110070702012-12-21T20:37:00.000-05:002012-12-21T20:37:06.918-05:00Five years already!Today, it's already been 5 years that Cédric was born!!<br />
Of course, time flies and it seems only yesterday to me that I held him in my arms for the first time. But if I think carefully, we've had 5 very full years.At only 5 years old, Cédric has been to France 3 times, to Florida 3 times and to the Dominican Republic once. So we've traveled quite a bit.<br />
One of the positive sides of Cédric's journey and his developmental rythm is that Ive 'kept my baby a little longer than most people. Of course, I could do without the diapers, but I wouldn't give up the awesome hugs and kisses I get for anything in the world!<br />
This special day for him was also another chance for me to realize how lucky we are for the way he's taken care of at school. From the special education teacher and the teacher aids assigned to his case, to the principal, and including the teacher and teacher aid of his regular classroom and even some people who are technically not involved with him, everyone does their best to take great care of him, tries to make his days productive but pleasant, and make exceptions for him. All of them seem very attached to Cédric and seem to hold a special place for him in their heart. Today more than ever, I witnessed their love and devotion, in the thoughtful gifts, but mostly in the hugs, the kisses, the smiles, the songs, and for Cédric, who is very affectionate, it's crucial and it warmed my heart.<br />
Today, Cédric received a few gifts and Happy Birthday was sung to him 5 times (his teachers, his classmates, his maternal grand-parents, his paternal grand-parents, and Mom and Dad). Tomorrow, we'll celebrate his birthday with a few carefully chosen friends, we'll sing Happy Birthday Cédric once more time, and we'll give him his big gift: a sensory swing. Thank you to all those who participated in that gift!<br />
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And please join me in wishing a happy birthday to a very loving, beautiful, special, BIG boy, if only with a little thought or prayer for him!Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com0tag:blogger.com,1999:blog-3610300044617515069.post-49313441178459407622012-08-16T17:38:00.001-04:002012-08-16T17:39:14.976-04:00Dog tales!<div style="font-family: "Trebuchet MS",sans-serif; text-align: left;">
After a busy summer, I finally have a moment of calm to write.</div>
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As the title, suggests, recent events have led me to talk about dogs!</div>
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I've been meaning to talk about Schatzie, our dachshund, for a long time, to share the many similarities between her and Cédric.</div>
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Saddly, because of back problems that gave her unbearable pain, Schatzie left us for eternal, pain-free rest, but I still want to talk about her, to honour the memory of a this one-of-a-kind little dog.</div>
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In the past couple of years, I noticed similarities between Schatzie and Cédric that made me wonder. Schatzie had anxiety attacks and was very sensitive to routine change and separation, she was clumsy to the point of hitting her nose when turning her head, she had food intolerances, she didn't play with toys the way you would expect, she was impulsive and a flight risk (and therefore alway on leash or attached in front of the house), she even had some sensory sensitivities and preferred lying down on me if I had my soft pjs on. All this led me to joke that she was on the autism spectrum!! Of course it was only a joke, which I hope won't offend anyone. It just really amused us to notice these similarities between them, and Dave and I joked a few times about the possibility that our parenting style had something to do with all of Cédric and Schatzie's behaviours...</div>
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Now that she's gone, I must add that she was an extraordinary dog, with an unmatched sweet personality and full of humour and happiness. She was Cédric's first dog and she never hurt him, even though the opposite is not true. He pulled on her hair and walked on her tail a couple of times (without any mean intention) and shes always reacted by leaving or giving him a little kiss. We will miss her a lot!</div>
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I wasn't planning on talking about her death that I hoped would happen in a long time, but such is life. One of the hardest parts of Schatzie's decline was explaining it to Cédric. I think he noticed that she wasn't as active and as much around in the last few weeks. Twice at the very end, she came out in the kitchen while we ate and Cédric started crying for no reason. Did he feel our worry and sadness, or maybe even Schatzie's pain? I talked to him a few times, to tell him she was in pain and she might leave us.. I debated a lot about the idea of allowing him to say good-bye. But she was in so much pain, she wasn't herself anymore, and I don't think he would have understood. To this day, I don't know if he is conscious of her death. After we had Schatzie put to sleep I talked to him a few times about the fact that she was in too much pain and that she had left us for ever. But is is very hard for me not knowing if he understands, not knowing if he misses her as much as I do, and not knowing if I handled the situation the best way for him.</div>
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And what followed makes me wonder just as much... I knew I wanted another dog right away. I couldn't bear the thought of coming to an empty house without a wagging tail, without wet kisses, without soft hair to pet. But there were decisions to make and as with all our decisioins, theyr were made more complex by autism.</div>
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We first thought of adopting a retired racing greyhound. But after meeting ne with Cédric, it turned out he was a little scared of such a big dog and their size created risks, in the stairs for example. After eliminating that option, we had to decide between an adult dog and a puppy. With Cédric, I thought an adult dog would be calmer and therefore a better idea, and it would be easier than a puppy to take care of. But someone suggested that a puppy gets used to whatever it's raised with, whereas an adult dog already had a personality with preferences, fears, etc., and that a young puppy would be more apt to getting used to Cédric and, for example, not bite him out of fear. So we decided on a puppy and chose a medium size breed so that Cédric wouldn't be scared but also couldn't hurt the dog too much, with a calm temperament so as not to make Cédric more active than he is, and who wouldn't shed too much.</div>
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So let me introduce you to Kimura, our little shiba inu female: </div>
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<a href="http://4.bp.blogspot.com/-QcaA412F27M/UC1R76vd4DI/AAAAAAAAEkM/JbqPpiPIBW8/s1600/SAM_1909.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="http://4.bp.blogspot.com/-QcaA412F27M/UC1R76vd4DI/AAAAAAAAEkM/JbqPpiPIBW8/s400/SAM_1909.JPG" width="400" /></a></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">All that remains is to make sure to raise her so that she's as tolerant of Cédric as Schatzie was and hope that Cédric gets attached to her and is careful with her. Piece of cake, right? :/</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">For now, he seems to find her cute but he's a little jealous of the attention we give her!</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><br /></span>Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com3tag:blogger.com,1999:blog-3610300044617515069.post-10264784007258236252012-06-17T10:00:00.000-04:002012-06-17T10:16:49.333-04:00SuperDad<span style="font-family: "Trebuchet MS",sans-serif;">As today is father's day, Happy Father's Day to all the Dads reading this post, but mostly Happy Father's Day to Dave, Cédric's Dad.</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">A little post to say thank you.</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Thank you for being a Dad who changes diapers without complaining (when it's been 4 and a half years and it's not over, it really counts!!), a Dad who helps feeding, a Dad who gives baths, a Dad who brushes teeth and puts to bed (and sings the same three songs over and over because he doesn't know any others, lol), a Dad who works hard, a Dad who researched recipes and possible therapies to help his little man, and a Dad who gives lots of kisses!!</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Cédric couldn't have chosen his Dad better (and I'm pretty happy with my choice too ;)). </span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Big Love</span>Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com0tag:blogger.com,1999:blog-3610300044617515069.post-58696773477054880492012-06-13T16:35:00.001-04:002012-06-13T16:35:18.224-04:00We need holidays...<span style="font-family: "Trebuchet MS",sans-serif;">I was planning on talking about something else, but today's events are worth sharing!</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">On Monday, I received a note from Cédric's teacher telling me his class would go bowling this afternoon. That didn't worry me as he's been bowling with the school before, and no permission slip was required.</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">At noon today, on my way to school to feed Cédric, it struck me that usually, when there is an outing, the school asks me to drive Cédric because the bus is not equipped for his harness. Hmm, weird...</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">When I arrived, one of the teacher's aids who works with him asked me if he was going and I told her I wasn't too sure... After recess, I therefore asked his teacher and the teacher in charge of special education, who were coming towards me together, if Cédric was going. There had been a communication "omission" and the former had forgotten to warn the latter who takes care of logistics and therefore of contacting me to organize outings. I asked the teacher's aid who takes care of him in the afternoon if she intended of taking him and she said yes.</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">So off we went with Cédric to my car (as the bus had left without waiting for the teacher's aids) and there: Oops! No car seat!! I had put it in the car of the person who takes care of him for respite yesterday and had not taken the time to put it back in mine... We therefore had to walk the crying little man back to school (the tears dried fast with a snack, music and a wagon ride) and no bowling for him!</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">We concluded (with humour) that we made a nice team and I believe all these ladies, myself included, need a holiday!</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Thank God, Cédric is easily distracted. For some autistic children, these last minute changes could have been devastating.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">A little anecdote that might seem trivial but shows nonetheless all the small extra obstacles and the constant need for organisation added to our daily life ;)</span>Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com2tag:blogger.com,1999:blog-3610300044617515069.post-35717890029751279932012-06-05T10:48:00.000-04:002012-06-05T10:48:37.147-04:00Here it goes!<span style="font-family: Trebuchet MS,sans-serif;">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.</span><br />
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<span style="font-family: Trebuchet MS,sans-serif;">It's hard to start and to limit myself, but I must start somewhere! </span><br />
<span style="font-family: Trebuchet MS,sans-serif;">In this first post, I want to start by telling you what we went through to get a diagnosis.</span><br />
<span style="font-family: Trebuchet MS,sans-serif;">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.</span><br />
<span style="font-family: Trebuchet MS,sans-serif;">Here's a summary of the (many, slow and painful) steps that led to a diagnosis: </span><br />
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<li>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);</li>
<li>September 2009: Cédric is evaluated by a speech pathologist, physiotherapist and developmental consultant who all conclude that there are global delays;</li>
<li>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);</li>
<li>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);</li>
<li>March 2011: appointment with a geneticist who does not see signs of genetic syndroms (and some testing confirms there is not genetic cause);</li>
<li>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);</li>
<li>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;</li>
<li>April 2012: appointment via teleconference with a pediatric psychiatrist who accepts at last to give Cédric a diagnosis of Autism Spectrum Disorder!!</li>
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<span style="font-family: "Trebuchet MS",sans-serif;">It therefore took close to 3 years between the first hints that something in Cédric's development was different and the official diagnosis.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">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.</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">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.</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">As for the positive note: her official diagnosis states first (and to me foremost) that <b>"Cédric is an exceptionally beautiful 4-year-old boy with big eyes and chubby cheeks"</b>. Not every parent can say that have a doctor's note that their child is handsome :D</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">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!</span><br />
<span style="font-size: small;"></span>Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com4tag:blogger.com,1999:blog-3610300044617515069.post-59120595660035011872012-06-01T19:02:00.000-04:002012-06-07T14:07:27.926-04:00Introductions<span style="font-family: "Trebuchet MS",sans-serif;">Before I dive in, I thought it would be appropriate to start with introductions!</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Our little family is made of:</span><br />
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<li><span style="font-family: "Trebuchet MS",sans-serif;">Dave, my husband, who is a financial advisor, a musician (guitar), who does Jui Jitsu to unwind and stay fit and who is a geek in his free time;</span></li>
<li><span style="font-family: "Trebuchet MS",sans-serif;">myself, Marie-France, an expat from France living in Canada, French as a Second Language teacher by trade but stay-at-home mom by vocation, who does yoga and digital scrapbooking to relax and who by force of circumstances became a "Mother warrior" to ensure the well-being of her little man;</span></li>
<li><span style="font-family: "Trebuchet MS",sans-serif;">Schatzie, our dog, a long-haired dachshund (or how we like to say a mouldy wiener) who is soft and sensitive, full of energy and a little loud;</span></li>
<li><span style="font-family: "Trebuchet MS",sans-serif;">and of course Cédric, our son, the reason behind this blog, a little man who is almost always in a good mood, full of humour and energy, tender and affectionate, who loves music and technology just like his Dad, and who happens to be on the autism spectrum!</span></li>
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<span style="font-family: "Trebuchet MS",sans-serif;">This is us:</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">The point of this blog is to share our experience. Among other things, frustrations and progress, paperwork and interventions, classic and alternative treatments (nutrional supplements and Heilkunst homeopathy), recipes, quotes, and anything else I might think of!</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Thanks for reading :) </span>Marie-France Gervaishttp://www.blogger.com/profile/05936537856561924938noreply@blogger.com1