{"id":10277,"date":"2022-01-25T14:54:59","date_gmt":"2022-01-25T19:54:59","guid":{"rendered":"https:\/\/rqmo.org\/ewen\/"},"modified":"2022-01-25T14:54:59","modified_gmt":"2022-01-25T19:54:59","slug":"ewen","status":"publish","type":"post","link":"https:\/\/rqmo.org\/en\/ewen\/","title":{"rendered":"Ewen"},"content":{"rendered":"

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Life with a different child<\/h3>\n

Fragile X syndrome<\/h4>\n
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Montr\u00e9al, February 27, 2011<\/div>\n
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I’m the mother of two children, one of whom is an 8-year-old boy with Fragile X syndrome. We were diagnosed relatively early, at 20 months, following several neurology appointments at H\u00f4pital Ste Justine. This syndrome is still relatively unknown to health professionals and the general public. Yet it is the second most common hereditary cause of intellectual retardation, after trisomy 21. That’s why it’s vital to spread information about this syndrome as widely as possible, which will help demystify the fears of those who don’t live with the difference, and the fact that we’re not worse parents than others, but parents who just want to be supported in the challenge of living with a different child. <\/div>\n
<\/div>\n
I’m very happy whenever possible to be able to share my experience as a mother with a different child, this little boy of mine, who is trying to live his life as best he can surrounded by his parents. These few lines will be a small testimony of our experience with our son. <\/div>\n
<\/div>\n
After his birth, Ewen was doing well, although he had slight developmental delays that didn’t alarm us. Everyone came to the same conclusion: ” He’s a bit slower than the others, that’s all”.<\/i> As the months went by, however, this little creature began to show motor delays characterized by hypotonia. <\/div>\n
<\/div>\n
Clinical and medical research had to be undertaken, as I began to wonder about his health: why was he slower than the other children? I could no longer remain in the dark; I wanted answers. <\/div>\n
<\/div>\n
But unfortunately, access to the healthcare system is laborious, and we had to wait yet again for our first appointment at the neuropediatrics department at Ste Justine. A few months went by, and after a few weeks of waiting for tests, we got a diagnosis. Our child was suffering from Fragile X syndrome, a genetic disorder of the sex chromosomes that leads to more or less severe physical and intellectual developmental delays. In short, Fragile X syndrome affects one boy in 4,000 and one girl in 7,000, and is under-diagnosed according to recent research on the syndrome. <\/div>\n
<\/div>\n
It was a shock, of course, because we hadn’t expected such a diagnosis, especially as the doctor’s announcement was very direct: your child will be disabled. However, like many other parents, we didn’t have to endure the ordeal of being diagnosed. <\/div>\n
At the time, my partner and I thought the world was falling apart. It was very hard. None of the nursing staff told us what to do. We found ourselves on our own, faced with a health care system that didn’t listen to its patients, was very pragmatic, had no social role and practiced only clinical medicine. <\/div>\n
With no other alternative, I put my heart and soul into finding resources to help us and our little treasure. It was a full-time job. After weeks of effort, the public system gave us one hour a month of physiotherapy to stimulate him to walk, which was clearly insufficient. So I had to ask for the services of someone in the private sector interested in working with our son, because some doors closed when I explained what was wrong with him. In fact, I believe that some professionals feel helpless when faced with intellectual disabilities, which are frightening when ignored. After weeks of therapy, he took his first steps at the age of two and a half. First steps in life, first upright discoveries of a world in which he only asks to be understood. <\/div>\n
<\/div>\n
In the months that followed, and after a waiting list of at least a year, our son was able to begin receiving services from a rehabilitation center for intellectual disability and pervasive developmental disorders (CRDI-TED), where he is still being followed. He attends a specialized school in metropolitan Montreal. <\/div>\n
To succeed in this great challenge of being a parent with a different child, I think we need to encourage partnerships between different ministries, and even more so in a context where there is a shortage of professionals. All this can be done with the greatest respect for all, by encouraging communication and the exchange of know-how, and by taking into account the needs of the children, who must be at the center of everyone’s concerns. <\/div>\n
<\/div>\n
Marie-C\u00e9cile Ermine<\/div>\n<\/blockquote>\n","protected":false},"excerpt":{"rendered":"

  Life with a different child Fragile X syndrome Montr\u00e9al, February 27, 2011 I’m the mother of two children, one of whom is an 8-year-old boy with Fragile X syndrome. We were diagnosed relatively early, at 20 months, following several neurology appointments at H\u00f4pital Ste Justine. This syndrome is still relatively unknown to health professionals […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"default","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[120],"tags":[],"class_list":["post-10277","post","type-post","status-publish","format-standard","hentry","category-portraits"],"_links":{"self":[{"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/posts\/10277","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/comments?post=10277"}],"version-history":[{"count":0,"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/posts\/10277\/revisions"}],"wp:attachment":[{"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/media?parent=10277"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/categories?post=10277"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rqmo.org\/en\/wp-json\/wp\/v2\/tags?post=10277"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}