A few little extra additions to a blog Update I did in early June around Awareness Week. With all that has happened in June, I hadn't had a chance to update earlier. This information was released by Unique, which might help people understand conditions like Nate's......
Our bodies are made of billions of cells. In each cell is a set of structures called chromosomes that carry all of the instructions (genes) that tell the body how to develop, grow and function.
A chromosome disorder is when there is a piece of chromosome missing, extra or when a section from one chromosome changes places with a section from another chromosome.
For healthy development, chromosomes should contain just the right amount of material - not too much and not too little. Even a tiny change can disrupt development, and may cause physical and/or learning disabilities.
A child-friendly way of explaining this is to use the metaphor of a jigsaw puzzle. Most children are born with all the right pieces that fit together just like a jigsaw does. But for some extra-special kids, they get a little extra jigsaw piece, or conversely might be missing a piece, and that is what makes them unique and special.
Every month 150 new families join Unique every month, as more and more children are being diagnosed with a rare chromosome disorder. In 2007 there were 5,000 member families, in 2014 there are now almost 12,000. There are many many different types of chromosome disorders within this number - the last official count of those with Nate's condition is 110.
Awareness week saw a lot of articles generated worldwide about these disorders. It is really great to see heightened awareness, and most importantly understanding growing worldwide, even though there is still a long way to go. (Certainly before we had Nate, we had little concept..... in fact I'd say no concept. Ah how times/lives change!)
Everyday I read of posts where trisomy kids or syndrome kids, have experienced some form of challenge beyond that of their particular diagnosis, or of what any parent would see as acceptable for their kids.
These range from discrimination of a child in a special wheelchair-pram from being able to eat in a restaurant with their family, because the restaurant has a no pram policy (be watching TV3 this week for more on that), to no funding be available to fund teachers aid support for a local 14year old who has the reading comprehension of an 8year old, and all his other milestones at the 6year old mark, because he is 'doing too well' to apply for funding (imagine the angst for the parents - how do you help your child?!), or even just straight out bullying of our special kids by others less-informed, less tolerant, or straight out ignorant.
Heartbreaking. And we hope hope that we can avoid as much of that as possible for Nate, although that will be a challenge and a half in the years to come. For example the latest NZ Government budget looks to take a further $300k out of the special needs money pot, and funding is already just about impossible to get. It's bad enough that these kids have to deal with all the medical crap that they have to manage in life. but all this other stuff too?? Come on world, we can all do better than that!!
Here are a few articles that might be of interest, certainly they have been thought provoking and meaningful to us....
Interesting article that challenges the 'as long as it's healthy' concept
Example of another diagnosis and link to Unique and Awareness Week
Great article about the challenge of processing a diagnosis, pre birth
Processing the concept of becoming a special needs parent
Article about Mara - I have Down Syndrome, I am not Down Syndrome
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| Looking outside for Monet the cat |
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| First time at Jumping Beans |
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| And favourite past-time, wrestling with Daddy |
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