Kids DO NOT usually die by the age of 2 years old. Yes, it can happen, but that is rare now. Most kids/adults with the syndrome live for well into their 30's, 40's and there is a lady in the US who is 62 years old. She is actually one of the first patients ever diagnosed. It is a chromosomal disorder which effects the short arm of chromosome 4. It is not caused by drugs, alcohol or poor eating throughout a pregnancy. It is not caused by poor parenting. For 80% of cases, it is something that has occurred spontaneously at conception and is not likely to happen ever again. In the remaining 20% of cases, one of the parents will have something called a balanced translocation. Without going into the genetics too much, it basically means that the parent has passed on the faulty gene at conception. This happened in our case. Something I had no idea of when I conceived Ryley. Seizures-85% of all children will have some sort of seizure activity. Most grow out of their seizures by the ag…
I know many of you already know what 'The Dream' is, and over the next couple of weeks, we can finally spill (most of) the beans.
A quick recap for those who have forgotten:
The Dream is basically an idea that has evolved over time as a solution to when Ryley finishes school.
My worry has always been that as soon as he turns 18 years old he will have nothing to do.
Sure, we have 2 options here.
One is a day program type environment.
The other is like a sheltered workshop type environment.
Neither of which I feel will necessarily suit Ryley.
Of course things may change in 8 years time.
But for us, we really felt we needed to create a future for Ryley, instead of just waiting to see what he might be able to do.
I actually have very little faith in the system at the moment too.
I have been discouraged recently at the way I have seen supposed carers treat the people they are caring for
(eg. Not changing someone's nappy for the whole day is just not friggin' on ok?).
I am currently reading a book called 'Strong Mothers, Strong Sons', which is written by Meg Meeker. This is the beginning of my journey towards understanding what I could be doing better when it comes to supporting Ryley with the teenage years (this should benefit Braeden too!).Of course there is nothing in this book so far that relates to teenagers with complex disabilities ie. if they can't talk. However, I do feel as though there is some useful content. My plan is to start sharing my findings, and hopefully, start the process of developing some practical guides for parents of teens with a disability.
One thing I have been reminded of, is how easy it is for a mother to cause pain in her son's heart. While she (or I, such is the case), is busy focusing on how she is feeling about her son's behaviour , her son is slowly backing away because he doesn't feel as though she cares. I get this. It is so easy to make a young person's behaviour persona…