I have just looked at this forum and it seems to be all over the map. Howwever, there is not much about "adults with special needs", which is the forum title.
Is there any way that this can turn into a good forum for adults with special needs and their caregivers/family memebers as it was probably designed to do? Rather than just a coffee-clatch about what people are going to do for the holidays or who to send valentines day cards and gifts to? Perhaps people can limit their posts to the issue of "adults with special needs".
I would really appreciate that and I think others would as well. I can see by the sporadic postings that it is not a very active group. I also notice that there are not many "adults with special needs" here..
Hi I agree totally with your comments a forum just for adults with special needs is essential. There are very few if any forums around for adults where there are absolutely loads for children with special needs.
Yes, I agree with you completely. Once our kids turn 18 and become "adults" or 22 (for school services), nobody seems to care about them anymore.
There are no groups of specialist doctors available to our children who are familiar with our medically involved children with developmental and special needs, as they have in every county for children.
When our children become adults, we as parents, are suddenly left up in the air and on our own, out in the cold, hanging by our hopes and prayers of successfully and independently locating appropriate medical care for our adult children. We are left in a position that suddenly, our children have been dumped into the big world of "normal" adults and that our only choice is that we just have to hunt down the best "adult" doctor of a specific specialty, from any phone book or street corner that we can find, so to speak, and then hope and pray that we made the right selection for the best medical care for our kids. Mostly, these are all adult doctors who usually will not have another patient with special developmental needs in his/her practice and who do not even begin to know the complexities of this population of our now "adult"children. Yes, they do know medicine, but many of our children deviate from the medical norms. It takes a doctor with special training and who has a special trained eye to identify or know what to look for in our children and adult children who have developmental medical issues and extraordinary medical needs. It seems that nobody is listening to the needs of our adult children.
Socially speaking, there are not many groups or organizations (like make-a-wish for children) who seem to care about our adult kids or who want to help them to make our adult children's lives better. There are a couple of adult wish granting organizations but they are under-funded and not publicized. Maybe one of those "celebrity apprentices" should start a new "adult" wish granting charity!
Our adult children with special needs are an over-looked population in today's society of medical care. I have personally heard that NIH is aware of this issue of the lack of qualified medical specialty carry-over -care from child to adult in this population of patients. But nobody who is aware of this problem seems to be in the process of doing, anything to change this. Our children should have "adult medical/developmental specialty clinics" similar to those that are available to children in every state and county of this country. Where there are doctors in every specialty field of medicine who are also dual trained in developmental and genetic issues and who follow this population on a regular basis. Our adult children need to have available to them adult medical specialty clinics in every county of the USA , where there are trained doctors of all specialties who are completely trained in identifying, recognizing and treating the complexities and developmental needs and subtleties of this population. This should be a new medical specialty field offered to students by every medical school in this country.
Parents of adult children with special needs should not have to wear out the sidewalk concrete pacing around from doctor to doctor in an attempt to locate appropriate medical care for an adult with special needs.
Instead, the NIH has done nothing to address the issue.
Advocacy groups have done nothing to address it.
Medical schools have done nothing.
Sadly, our society's answer is to just ship them off to group homes once they reach adulthood and close the doors on them. Nobody really cares anyway because no are kids are grown and not cute cuddly little things anymore. Many people just turn their faces the other way and do not even want to look at these adults.
Parents accept this solution not so much by choice but because of the fact that they have no alternative.
I will never give up on my child! And a group home placement will be over my dead body.
Hopefully, one day, this country's medical schools and doctors will "get it" and try to do something about it. Then, maybe the next generation of adults with special needs can live independently in their communities and with their families, enjoying the same medical care and social groups that is afforded to CHILDREN in this country, even though our adult children might have matured and no longer have those cute cuddly little faces that people seem to be more attracted to.
jeanne61, I also agree with you that the same goes true for us having few forums for parents of adult children with special needs. Many may just give up looking. Others do not know where to look. Others finally just place their children in group homes. It WOULD be nice if this board did, in fact, become active!
Hi you have some very good comments and I agree mostly with what you have said apart from the care home issue. You seem to have a big problem where this is concerned. Have you though to yourself what is going to happen when you are no longer around? Who would be able to look after your child then? That is what I have though of and I know that Glen wouldn't have anyone to look after him. I need to know he will be ok when I'm not here. There are some good care homes around so I think you are being quite harsh in your opinion of them.
I really had no choice but to place Glen in a home for his own good. It is a very good home I know that isn't always the case but there are some good ones around!
It would be nice if this forum was more active where adults with special needs are concerned. It is very concerning for parents as to what will happen/what support there will be when there children grow up I can understand that.
We need more active forums for parents with special needs kids who are now adults and of course for the special needs adults themselves!
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