Stories sent directly by email to me:
My son is a big guy. He is 6'4" tall and weighs about
When he was little, I had some "natural supports" - grandparents who are
almost all gone now. One of them abused him so that "natural support"
Then there were the "paid supports" like respite care workers who didn't
have a clue, kept him for a weekend and complained to high heaven about how
bad his behavior was. Duh, behavior issues? What a surprise for a kid
with...drum roll...BEHAVIOR ISSUES that made me need respite to begin with.
So, we did the paid supports TWICE in his whole life until he became an
Now...our paid supports can't handle him either, IF we can find them after I
take several hours off work to interview them - and they never call back.
Once, my son went to visit my brother in
ago). BLESS MY BROTHER'S HEART for doing this for him. But, it was the
first and probably the last time it will ever happen.
I have no family in
manage my son's affairs for me if I am gone. This was huge for me. I
didn't ask her - she told me. She knows he will have a special needs trust.
She also offered to be my backup when I move to the mountains. (My son is
staying in the city, I am moving to the foothills. His dad lives in the
city but is "barely" there for him - but enough to go get him if there is a
problem and I won't be far away anyway). But, my best friend has never even
babysat my son or spent any time alone with him before.
I do not belong to any church and won't do it just so I can find some
so-called natural supports.
Most people can't handle my son. They pretend to like him then they talk
over him, ignore him and never invite him anywhere. THAT is what natural
supports are to me.... people who "make nice" and then disappear.
One thing I feel
moved to add: Natural supports finding (and I don't think they just
happen to evolve most of the time) is just another stressor. When my son
was very young - under 5, I had one neighbor who would 'support' him for an
hour so I could go to the grocery store - upon my return she was always saying
how pleased she was to keep him for me - which was great. Followed by - I
am glad this is just once a week, don't know how you do it every day! And
he was about 4 at the time, still in diapers, and only weighing about 30
Now he is 25, weighs about 150 lbs, is toilet trained and verbal but he lives with his caregiver almost an hour from us. Why not with Mom and Dad? Because event tho his behaviors are non-aggressive, they are continual and nerve shredding perseverations and RIGID. DO I have natural supports? His sister nearest us has two very young children - he doesn't like their noise and her husband doesn't like our son. Neighbors? Mostly as old as we are. Other family? Spread up and down the east coast.
That is the biggest issue with Natural Supports. I believe the proponents of this have some idyllic vision of something approaching a co-housing environment or maybe Amish village la la land where neighbors and friends just reach out to be part of your family.
I have never found that even though we mostly have lived in small communities and are very involved in the communities in which we have and currently live.
I really appreciate you venturing down the path of 'natural supports', which in my opinion are not so natural.
I would like to share my story as well. I
can't say I have ever had natural supports for my daughter. She is now 22 years
old and lives with me, her step-dad/guardian and a younger sister. We
Several years ago I had requested assistance with the state to find someone to come give my daughter an emergency shot when she goes into shock. In Oklahoma there are only a few people who can be paid to give a shot, doctors, RN, Physicians assistant, nurse practitioner, and a paramedic. So in order for them to NOT pay one of these people they asked if I could have a neighbor come give the shot. When I explained to them that I live in a rural area and that I actually don't know my neighbors, I was told it's time to go meet them. They denied services on the grounds that natural supports are available. We appealed. At the hearing I defined the word "natural" and asked if introducing myself to a neighbor and asking if they would be willing to come to the house in an emergency to give her a life saving shot as even close to the definition of "natural"? We won the hearing, but there is no one available now to do this.
In Oklahoma, "natural supports" is used as a weapon against families who choose to keep their children (no matter their age) at home. If we would put our loved one in a community group (DLS) home then they stop looking or requiring natural supports.
I would like to know the difference between those with DD/ID being required to use natural supports versus the aging not having the same requirements. Or do they? < /o>
The thing about natural supports, in my opinion, is that they should be an option that might be chosen, not the only possibility available, nor the way society expects us to get our needs met. A dependence on natural supports can lead to a feeling of dependence and too often the label of "burden." I remember when I was a child and my grandmother was quite old. She lived independently in her home, but was unable to maintain the home. She was preoccupied with "luring" people (relatives, friends, etc.) to her home and there was always a job to do. People came to feel used and avoided her. Now, as an adult with a husband and adult son who are dependent for all needs, a full time job, etc., I can become very overwhelmed and relate to my grandmother's predicament. I'd love some community support. When my husband first had his stroke, people came and visited, took him out for activities, helped with driving him to rehab, etc. Now, people have returned to their own busy lives. "Natural supports" can be very hard to sustain over a long period, particularly if there is no extended family. It is detrimental to relationships for one individual to provide natural supports out of a sense of guilt or duty. The charity model of care, which manifested in a loss of control and a dependence on the whims of others has been replaced with a consumer model, which empowers. Please, let's not go back.
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