There was a time not so long ago, when parents surrendered their disabled children to 'the authorities' for care. A disabled child was considered a burden and 'normal' folk, not considered qualified to care for them.
This resulted in enormous grief for many parents, and a terrible situation for many of the children concerned. Abuse was rife, and neglect, commonplace.
Even now, there is a culture that suggests that it's best for the family to allow 'the experts' to manage the care of their disabled loved ones.
This is of course utter nonsense, but it's out there.
Who knows better what needs to be done for their child or adult dependent, than the very people who live closely with them and have their best interests at heart? The Experts or the Family?
We have battled this for our son's entire life. We have steadfastly ignored many Expert Opinions, always being guided by what we knew to be the best course of action for Mr A.
This has been considered brave by some and foolhardy by others, but had we not dug our heels in on many an occassion, Mr A would not be the person he now is living the life he now has.
If we'd followed Expert Advice, Mr A would be trussed up like a turkey with various orthotic appliances, living at home with us and his younger sister, accessing 'Day Respite'...another term that fills me with alarm on one hand and fury on the other.
Instead, he wears orthotics for short periods of time in the privacy of his own home (note I said 'his own home'), and attends sporting events, college, and outings at whim, and generally has the same choices for an independent life that you and I enjoy.
So, who's right?
I must say though, that this would not be possible without the help of our large and extended family and the help of Mr A's very dedicated Personal Assistants. He has a team of four PA's. Each of them chosen for their specific skills or ties to Mr A and their genuine interest in supporting him in living an Equal Life to that of his able bodied peers. To them we are truly grateful.
The sense of pride and achievment that Mr A feels in living independently is greatly enhanced by his ability, through the support of his team, to arrange and participate in family events, without us being directly involved. He hosted Fathers Day last year, with the help of his Managing Assistant who preprepared a sumptuous brunch for us. He is currently planning his own 21st birthday party with assistance from the same person. He attends family gatherings with their help with transport and their sensitive and seamless support. These things all make him feel truly adult and accomplished.
We of course, see the changes in him and his stature in the eyes of his older brothers, who see him now as the adult he is, and not the 'little' (and therefore helpless) brother.
Family truly does know best.