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
Monday, October 17, 2011
Sunday, October 16, 2011
Why I Am Starting A Blog
I have been thinking about starting a blog for quite a while, for some reason it has taken me several years to actually get around to doing it. I want to document the stories of our family, and our life with Fragile X Syndrome, Autism, and a few other medical diagnosis thrown in for good measure. We seem to have more than our fair share, so it seems like we should have more than a few good stories.....we shall see.
My first memory of Fragile X was at age 5. Road trip with my family (dad, pregnant mom and toddler brother) to visit my grandparents and my uncle David. David is my fathers youngest sibling. The youngest of 6 siblings, and only 9 years my senior. Dave would have been 13 at the time of our visit, and I could not have been more thrilled with my playmate. Dave was perfect in my eyes. He had bright red hair, a dry sense of humor, and never seemed to tire of my 5 year old questions. Though he was a "big kid", he liked playing with me. We were quite a duo that week, Dave taught me so many things. I had a new found advantage with my tall companion, we could reach things before unattainable, we got ourselves into a fair share of mischief (and cookies). Dave had an impressive lunch box collection. He had an 8-track tape player and we played Kenny Rogers Greatest Hits and "Every Elvis Album Ever Made" until my grandpa offered us a quarter each if we would turn it off. He taught me all about the "cool shows" on television. No more Looney Toones for me, I was now savvy to Batman, Merv Griffin, and "The News".
I reveled in the week, being with Dave was like being with royalty. Whatever food Dave wanted, we just had to ask and we got it. If we were at the store and we wanted to go home, we got to go home, no questions asked. Dave was my pass to everything wonderful in the world. He was perfect in my eyes. Then one afternoon my grandma had a friend over for coffee. I overheard them talking in hushed tones about Dave. I stood as still as I could as to not be detected in the hallway as I eavesdropped, I heard my Grandmother tell her friend that Dave was "Retarded". I felt that I now understood, this must be something very special about Dave. This was why he had such a wonderful life, and my grandparents adored him so much. It all made perfect sense in my 5 year old world.
The next day we left for home. I didn't want to leave Dave and our new found friendship. He gave me a parting gift, a Scooby Doo lunch box from his prized collection. Included was a orange plaid kitchen towel donated by my grandmother and very specific instructions from Dave about not letting my lunch box get wet and several reminders what he had taught me about rust and the damage it could do to my prized lunch box. I dutifully dried the rain drops off my lunch box as we drove away in our station wagon with wood paneling, and I watched as Dave's red hair disappeared out the back window.
Sometimes I wish I could go back in time 37 years, back to when I had this wonderful week with Dave. Back to when a child's wisdom knew how wonderfully special Dave's lessons would be to my life.
My first memory of Fragile X was at age 5. Road trip with my family (dad, pregnant mom and toddler brother) to visit my grandparents and my uncle David. David is my fathers youngest sibling. The youngest of 6 siblings, and only 9 years my senior. Dave would have been 13 at the time of our visit, and I could not have been more thrilled with my playmate. Dave was perfect in my eyes. He had bright red hair, a dry sense of humor, and never seemed to tire of my 5 year old questions. Though he was a "big kid", he liked playing with me. We were quite a duo that week, Dave taught me so many things. I had a new found advantage with my tall companion, we could reach things before unattainable, we got ourselves into a fair share of mischief (and cookies). Dave had an impressive lunch box collection. He had an 8-track tape player and we played Kenny Rogers Greatest Hits and "Every Elvis Album Ever Made" until my grandpa offered us a quarter each if we would turn it off. He taught me all about the "cool shows" on television. No more Looney Toones for me, I was now savvy to Batman, Merv Griffin, and "The News".
I reveled in the week, being with Dave was like being with royalty. Whatever food Dave wanted, we just had to ask and we got it. If we were at the store and we wanted to go home, we got to go home, no questions asked. Dave was my pass to everything wonderful in the world. He was perfect in my eyes. Then one afternoon my grandma had a friend over for coffee. I overheard them talking in hushed tones about Dave. I stood as still as I could as to not be detected in the hallway as I eavesdropped, I heard my Grandmother tell her friend that Dave was "Retarded". I felt that I now understood, this must be something very special about Dave. This was why he had such a wonderful life, and my grandparents adored him so much. It all made perfect sense in my 5 year old world.
The next day we left for home. I didn't want to leave Dave and our new found friendship. He gave me a parting gift, a Scooby Doo lunch box from his prized collection. Included was a orange plaid kitchen towel donated by my grandmother and very specific instructions from Dave about not letting my lunch box get wet and several reminders what he had taught me about rust and the damage it could do to my prized lunch box. I dutifully dried the rain drops off my lunch box as we drove away in our station wagon with wood paneling, and I watched as Dave's red hair disappeared out the back window.
Sometimes I wish I could go back in time 37 years, back to when I had this wonderful week with Dave. Back to when a child's wisdom knew how wonderfully special Dave's lessons would be to my life.
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