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Edna3362
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29 Jan 2024, 9:14 pm

cyberdad wrote:
colliegrace wrote:
Ah, so kinda like how my disabled stepdad (paralyzed and had serious chronic medical issues) required basically 24/7 care. We had nurse aides and I think that's the only reason we were able to get out of the house.


Kind of like that. Depends on the functional level of the child (and how many kids you have). Unfortunately most parents don't have the luxury of support like carers or aides at home to look after a child so it ends up being one or both of the parents.

That, and the caregiving culture.

Some households had it easier by just having a designated able-bodied NT who just plays that role -- and it's usually a house that has extended family members living in it. Cousins, aunts, grandparents...

Others are even luckier; by having a house full of them and can afford to just take those who need 24/7 aide with them, and take turns or go together.

Not easy to pull of in a society of nuclear families with only 1-2 primary providers and leaving one with no caregiving experience whatsoever.


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skibum
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29 Jan 2024, 9:23 pm

cyberdad wrote:
colliegrace wrote:
I guess in a sense I understand being a parent of someone with a disability becoming an identity of sorts, and possibly involving some sense of community if they connect with other parents of autistic children.


For me I wish this was the case, unfortunately it's not. Parents of autistic kids are pretty much the same as any other parents. If their child is "higher functioning" than mine then they don't want their kid hanging around my daughter. The kids also tend to self-select with other kids more like them. Parents of kids who are struggling to function in society (I hate the term low-functioning) are too stressed and exhausted to socialise/mix. Looking after these kids is a full time job.

It's really sad that it's difficult for you to get the support you need. I wish we could fix this broken system. Big hug. :heart:


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Edna3362
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29 Jan 2024, 9:32 pm

skibum wrote:
cyberdad wrote:
colliegrace wrote:
I guess in a sense I understand being a parent of someone with a disability becoming an identity of sorts, and possibly involving some sense of community if they connect with other parents of autistic children.


For me I wish this was the case, unfortunately it's not. Parents of autistic kids are pretty much the same as any other parents. If their child is "higher functioning" than mine then they don't want their kid hanging around my daughter. The kids also tend to self-select with other kids more like them. Parents of kids who are struggling to function in society (I hate the term low-functioning) are too stressed and exhausted to socialise/mix. Looking after these kids is a full time job.

It's really sad that it's difficult for you to get the support you need. I wish we could fix this broken system. Big hug. :heart:

It isn't.
Prejudices are not easy to fix. It can take few generations if done consistently.

And I've seen parents who don't want their kids to be associated with ND children because they might "catch it". :roll:

Or reasoned that their (regardless of "functioning level") child may mimic/'be influenced by' or hurt by those with more behavioral issues.
Observation tells me the odds that is true are very low, but if it happens it gets very notable and easily become a forefront of gossip.

Or heck, that's not limited to parents -- some even thought that those who work around NDs are driven into some sort of insanity for just spending time with them.


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cyberdad
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29 Jan 2024, 10:44 pm

skibum wrote:
cyberdad wrote:
colliegrace wrote:
I guess in a sense I understand being a parent of someone with a disability becoming an identity of sorts, and possibly involving some sense of community if they connect with other parents of autistic children.


For me I wish this was the case, unfortunately it's not. Parents of autistic kids are pretty much the same as any other parents. If their child is "higher functioning" than mine then they don't want their kid hanging around my daughter. The kids also tend to self-select with other kids more like them. Parents of kids who are struggling to function in society (I hate the term low-functioning) are too stressed and exhausted to socialise/mix. Looking after these kids is a full time job.

It's really sad that it's difficult for you to get the support you need. I wish we could fix this broken system. Big hug. :heart:


Thanks Skibum, my daughter is 18 now and she is semi-independent and kind of looks after herself but we are still her primary caregivers especially in relation to handling money and moving/travel.



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29 Jan 2024, 10:50 pm

Edna3362 wrote:
Not easy to pull of in a society of nuclear families with only 1-2 primary providers and leaving one with no caregiving experience whatsoever.


Looking after an NT child is already one of the hardest jobs on earth. It's an order of magnitude more difficult when navigating the world with a child on the spectrum. We are somewhat fortunate that our daughter is medium functioning (often think she is right down the middle). Is she very adept at learning new things but only if she is interested. But frustratingly she has a long way to go in dealing with NTs on her own (she just started community college and I went to enrolment with her and she already pointing out mistakes in timetabling and scheduling). She is correct but NTs can only handle being interrupted/corrected so much.