Not a cure, just appropriate support

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ominous....
I apologise for offending you. I am going by what i have been told (i am a very new parent to this) and the fact is - my son IS EXTREMELY sullen. He always has been.
Kel x

I don't much like the idea of pre-natal testing. It's not the testing for profound disabilities or conditions which are incompatible with life (had a friend who's 18 week scan showed her baby was anencephalic, and she had to choose between a late termination and birthing at term a baby who would be still born or who would die shortly after birth), but what about the grey areas? What about if your baby will be born the wrong gender, or with a predisposition to depression? I don't envy anyone having to make that sort of decision, and sometimes I think there is such a thing as too much choice.

On to the discussion at hand - cure or appropriate support and access to services? Having worked with people with profound disabilities, including those in wheelchairs wearing incontinence pads and being PEG fed, I would love to see a cure, or a prenatal intervention which would correct the mostly horrendous lack of quality of life that these people and their families endure. I don't believe in life at any cost. I worked in a service for families where the adult children with disabilities would go to respite while their elderly parent would get respite in a dementia unit on the same property. Respite beds are often "blocked" because of long term disabled people being "dumped" in respite when there are no available group home places. Hospital beds are also often blocked by people with disabilities who's parents have found they can no longer cope at home and there are no available group home beds. In NSW, your situation has to be pretty grim before you're considered for a group home placement, and there is also the plight of young people who have no other choice because of their disability, than to be placed in a nursing home for the elderly.

However, those are the extreme cases. Often it's the death of the main caregiver which leads to the tragic situation where an adult child who has lived with their parents suddenly having to be placed elsewhere. For autistic people, the change is incredibly stressful, behaviours often emerge which require intense intervention for a long period of time. It's one of the reasons I'd urge all people with children who have profound disabilities to start using residential respite services while your child is still young. It's so difficult to suddenly have to take someone from the family home into permanent group home care if they've never experienced being away from their family.

My son has high functioning autism. I believe that he is a very talented and intelligent young man, and hopefully the situation he's in now (very depressed and housebound) will resolve in time, and he will be capable of living independently and going to university, or getting a job which interests and satisfies him. I even hope that he'll find a special person just for him, who he is comfortable being intimate with. I have the same aspirations for him as I have for my other 4 children. To suggest that he could be cured is to suggest that he's not acceptable the way he is, and I wholeheartedly love and respect and accept him as a unique individual who just happens to be autistic. While I'd never admit it, I have learned far more from my son than from any education or any other person. He challenges conventional thought and social behaviour. I love our deep and meaningfuls, when he's in the right frame of mind to have them. I love the way he's challenged me as a parent, using all my skills as a human being to support him and from time to time, convince him to do something he doesn't feel makes sense, but need to be done. The things that we understand intuitively, often need to be explained at length. He catches on fast normally, and no matter what my explanation is, he often comes up with his own novel reason for doing something that needs to be done for the health and happiness of all people, not just for himself.

I don't like labels. We really only pursued a diagnosis because it was the way to get extra funding for an aide for him at school. I have always tried to use the diagnosis as a tool to liberate him, rather than to put him in a pigeon hole with a whole bunch of rules and restrictions.

I don't think we'll ever have equality until every car space and public toilet is accessible to a person with a disability. This is one of the most profoundly symbolic sentence of inclusion that I have come across. I know it's not practical or probable, but while we still have "disabled" car spaces and "disabled" public toilets, we've a long way to come for real acceptance and inclusion.

I don't think thats an Aspie trait, just a trait. Is he really sullen or just appears to be that way? Generally I would characterise sullen-ness as pulling a sour face, being in an apparent bad mood, and being silent except for the occasional emotional outburst.

Maybe sullen was the incorrect term for his mood....he is always sad.....sometimes miserable.

[quote="anni"]I don't much like the idea of pre-natal testing. It's not the testing for profound disabilities or conditions which are incompatible with life (had a friend who's 18 week scan showed her baby was anencephalic, and she had to choose between a late termination and birthing at term a baby who would be still born or who would die shortly after birth), but what about the grey areas? What about if your baby will be born the wrong gender, or with a predisposition to depression? I don't envy anyone having to make that sort of decision, and sometimes I think there is such a thing as too much choice.

Anni- My first born was induced at 6 months gestation, they found he had severe spina bifida and life expectancy was very poor. My husband and i had to make that decision knowing full well that we were ending a life, and it was our first borns. It was indeed the toughest decision i have ever made. Labour and a funeral to follow, as well as milk for feeding with no prize to take home and feed, horrendous. It was 8 years ago today infact, and is bittersweet for us now having had 2 more beautiful sons. I agree there is too much choice, howevwer some choices are necessary as you say , where life expectancy and quality is limited.

such a great post from you- thankyou for sharing
Kel x

Ah another garden eater. Yes we've just got past that phase I think.

My son ate a lot of dirt too! In pregnancy they call eating odd things "pica". I wonder if that's the case with our kids? I know my mother, while pregnant with me, had an irresistable urge to eat sand, and she used to pop around behind the bus stop and grab a handful to feed her craving. The way she described it was as if it was an irresistable urge to eat it. Makes my cravings for crusty roll and ice cream together sound rather normal!

Oh yes, he's perfectly content to eat things that are not food, and reject the things that are delicious and edible!! I'd bet if given a choice between marshmallows and a wad of cat hair, my kid would undoubtedly choose the cat hair!!

We took him to the beach last week and he was afraid of the sand, but that didn't stop him from grabbing a handful of it and stuffing it in his mouth. Ah but the look on his face when he was chewing it...priceless.