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emma brooks
Peristeri, Greece
Recent Activity
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emma signed the petition | -
emma signed the petition | -
emma commented on the article |I imagine that most of us adapt, what used to be stressful in the past can seem meaningless in the face of a new way of life. You learn to deal with stressful situations differently (hopefully).
I think that what carers and families of people with disabilities face is a larger number of stressful situations, which may also be more prolonged. How each individual is affected by this is different - we all react differently to stressful situations. Alot of stress comes indirectly, more doctors visits, insurance and finacial problems, the attitude of professionals towards parents etc etc. And as Elise wrote, when we don't know how to deal with a particular issue/behaviour - I feel stressed if I don't have an answer (or control) over a situation - which is probably exactly what my son feels.
For those in the UK there is a book available free from Cerebra "managing stress for carers" author Anne Edworthy.
http://www.cerebra.org.uk/parent_support/support/stress.htm
which has a survey of what parents found most stressful, comments from parents, check list of stress "symptoms" and some advice as to reducing stress.
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emma commented on the article |Oh yes, there have definitely been times when the process of searching for, buying and assembling equipment has been more useful to me than my son! I've also found that with so many things you never know whether they are helpful or not until you try them, which can end up being very expensive.
The scarf reminded me of a post here: http://teachinglearnerswithmultipleneeds.blogspot.com/2009/06/headphones-options-for-special-needs.html
about various headphone options - how useful all the gadgets are who knows.
There is also a small demo of a student using proloquo2go here: http://summerschoolforspecialeducation.ning.com/video/student-demonstrating which may be of interest to some.
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emma commented on the article |I hadn't heard the term "intentional community" before, (perhaps as I live in Greece which is a wasteland when it comes to disabilty rights). I immediately assumed that the communities were intentional, ie, this is what the person in question wanted and chose, and that transition from one service to another was provided in a way that best suited the individual. Always be careful of assumptions!
I was sucked in by the word community, which inspires a vision of people working together in the a close knit, caring community (also using the word SAGE is appealing, with connotation of wise, and somehow ecologically sound - it's great advertising move). The idea of a smaller community is also often believed to be safer, but this is not always the case.
I must also remember that this idea of a small community is something which appeals to me, not necessarily my son.
My one reservation about the community idea is that it is a form of segregation, which is ok if the people living within the community prefer to be living in a more isolated setting, certainly not if they don't want to. A better option may be to "create" a community where someone already lives, through better intergration and the provision of supports within that setting. Although this is much easier said than done. Maybe it could be achieved through a "microboard", particularly for people who have higher support needs and more limited communication?
Unfortunately, talk of communities and microboards is still theoretical here in Greece, so I'm looking for ideas for what may work, for my sons future. -
emma commented on the article |I was (am) shy too, caused havoc for interviews etc.
With the last 2 categories I just had a vision of someone saying "your just shy, you'll get over it" without understanding anything about autism - although I guess that happens now.
On second glance there also seems a big divide, 3 categories using the word severe and 2 markedly different descriptions, not much of a continuum.
Pre-vocational skills for Charlie sounds interesting! -
emma commented on the article |
"...separations of severity within [the] spectrum be variable and inconsistent?...."
I agree with Dora wrote, there are lots of variables.
I've also found with Dimitri (who not autistic but is disabled) seizures have also played a major role in how well he is doing.
The "sub-clinical AS symptoms" and particularly the "normal variation", are almost suggesting shy and socially akward, which I think its estimated at 1/4 of the population is to some degree shy. Hope that doesn't lead to less understanding and accomodations instead of more. -
emma commented on the article |This is not a direct reply to your post but worth reading I think - I never realised the risk of amniocentesis, more testing for autism will put more pregnancies at risk.
http://www.guardian.co.uk/society/2009/may/16/health-nhs
When the research for autism genes seems so...vague (the same genetic varient occurs in 40% of the general population) any thoughts of pre-natal testing are premature. Although, before any more progress is made, now is the best time for discussion -
emma commented on the article |It can be detected but occurence rate is around 1:20 000 so its not tested for (the deletion/mutation is to small to be detected by amnio). It would be too expensive and take too long to test for all possible genetic alterations that our known.
In rare cases it is inherited (about 3%), so if there is an inherited case in the family, pre-natal testing would be offered.
Hope the new neurologist/testing is not giving you stress, at this point I wonder why he suggested it? -
emma commented on the article |
I read here http://www.downs-syndrome.org.uk/news-and-media/press-releases/2008/487-births-increase.html
that the number of Downs births are increasing in England and Wales, the reason being that todays society offers more inclusion and a better quality of life than previously.
Perception of disability plays an important role (before my son was born my perception of severe disabilty was pretty bleak, based on very limited information)
My son has Angelman syndrome, the first thing many people ask is whether I had prenatal testing, yes I did. There are thousands of genetic syndromes, and although testing is improving (and becoming cheaper) I doubt it will ever be perfect.
Improving information available to parents (if you want to make an informed choice you need to be informed) and improving supports are just as important if not more so than improvements in genetic testing.
Out of interest from the new genetic research
"genes involved in the ubiquitin-proteasome system", I think this refers to multiplications in chromosome 15q (angelman syndrome is deletion or mutation of the same chromosome region).
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