Tuesday, February 14, 2006


So is it just me??? Why, when I read the following piece of research by Saigal, do I see another "all-better-by-the-age-of-two" appearing?? Only this time the goal posts have moved, and it's now adulthood.

There are too many questions and not enough answers in this research, for example, what do they consider independant living??? How much support is needed, to make that living independant??? If it's with support, is it ever truly independant??
Is living in a care home, consider independant living?? Is attending Day Care classed as continuing education??

Many children with disabilities walk away from school with 'qualifications', but they won't be on the same level as you or I have. Any qualifications they may gain, will not equip them for a job where they demand A & O' levels. There are so many career paths out there that just are not available to people with disabilities, too many predjudices and too many people willing to take advantage of those less fortunate than themselves.

I know deep down that my son will never live independantly, not without a huge amount of support. That may be independant from me, but it isn't truly independant, as most of us would see it.

ELBW babies/adults, what gestations are we talking about here?? How many of these ELBW babies are the micro-preemies that they are able to save today, babies who in reality are far more fragile than a lot of the babies they were saving 20 years ago.

To me there are so many things within this research that may bring false hope to parents of premature infants. Too many questions that need answering before I start jumping up and down.

It's only when questioned deeper that you realise this research is not as positive as it would first seem. For those of us with preemies with disabilities as a result of their premature birth, they are not going to awake on the morning of their 21st birthday and find they have "recovered"
just as we didn't on their second.


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