In 1960 my uncle David was born in Fargo, North Dakota. My grandparents were told to put him in an institution. They didn't take him back to the doctor, instead they took him home and loved him. There was no Fragile X diagnosis, or even Intellectual Disability. They were told their son was Mentally Retarded and there was no treatment. There was no developmental preschool. No OT, PT or Speech. No medication therapies to try. No respite care. No pull ups...when I asked my Grandma how she managed potty training she said "I rinsed out a lot of shorts".
I remember the stick figure drawings and sketches my grandfather made for a picture schedule and later a grocery list for Dave. No PECS, no computers. They taught him to read a bus schedule and ride the bus to work independently. He has worked for a local sports pub as a valued employee for over 20 years. He was able to buy his own condo, next door to my grandparents with a special loan for persons with disabilities. I guess what I'm trying to say is that they did an incredible job with pretty much no help.
When they were still alive I called them whenever I needed advice. Now that they are both gone, whenever I have a moment when I feel inadequate to manage one of the curve balls that Fragile X throws my way, I just try and figure out what they would have done.
I'm a pretty lucky girl!
"I was sustained by one piece of inestimable good fortune. I had for a friend
a man of immense and patient wisdom and a gentle but unyielding fortitude.
I think that if I was not destroyed at this time by the sense of hopelessness which these gigantic labors
has awakened in me, it was largely because
of the courage and patience of this man.
I did not give in because he would not let me give in."
Thomas Wolfe
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