I am not a parent of a child with Cerebral Palsy. I WAS the child with Cerebral Palsy.
And I was a lucky one. I have MILD spastic trihemeriage Cerebral Palsy. I can walk, I can work, I can be a "productive member of socity" I "can" run (but its worse than forest gump.)
I am in the midst of writing a book on being an adult with Crebral Palsy. I recently got copies of my medical records from when I was little for a back story.
I am 33, born in 1977.
DXed at age 10 months. Was on the high end of the charts in congnative and "normal behavoir" that did not require my right arm or legs but in the 5% range for gross moter . I was in physical therapy by age 1 to work with my right hand to prevent it from becoming totaly useless. Took my first un assisted steps ON my 3rd birthday (heading for the strawberry patch!) Was in more weekly physical therapy from age 3 till age 14 to work with my legs. Spent most of my childhood in leg braces and special shoes.
The nearest Physical therapy clinic was 40 miles and the nurologist and orthopiedic was 100 miles away, we lived in a rual farming community. Financia Assistance was recived from what is now part of the United Cerebral Palsy Foundation, and the Shriners.
At 14 I started using marching band and special PE instead of actual physical therapy. Still had to wear orthotic shoes.
I was able to go to college with a Vocational Rehabitation Scolership and was living independintly. I now am 10 years married (to a scientist) with our own house, 2 cars, and 4 cats.
I also have mild hearing problems in my right ear (I cant hear lower ranges), almost severe visual impairment (was in glasses at age 4 but so does the rest of the family), I forget words, and my spelling is atrocious (funny conciderding I was an English major. I have strange things "wrong" with internal organs on the right side of my body; My right kidney is prone to infections, but not the left, my right ovary is non functional (I also have Poly cystic ovarian syndrome, not related to the CP), the right half of my esophogus is slow reacting so I have trouble swallowing sometimes. I am prone to pneumonia in the right lung.
I have a very good friend I met only 8 years ago, my same age but didnt recive the amount of physical therapy I did. He is only able to walk very short distances with the help of a walker. Normaly he is wheelchair "enabled" (I tell him I'm envious cause he has flashing lights on his chair-yes he did a car light kit on his wheelchair). Rick may have to use 4 wheels instead of 2 legs, but that boy does not let it get the better of him. He owns and is the chef his own online pastry store. he lives alone in an apartment in Atlanta, and here's the awsome thing- He goes for daily "runs"- 5 miles of the streets of Atlanta, every day, rain, shine, snow, heatwave. Why? Because he is part of Team USA. He is an Olympic hopeful for the paralempics in wheel chair fencing. He may not make it to 2012, but he will most likely be at 2016.
I hope Rick's and my stories are able to encurage you to encurage your children to reach for the stars.
I want to leave you with the last thought- Before my birth (youngest of 3) my mother was a 4th grade teacher. When I was dxed, she did what all good teachers did, she researched my condition, which led her other conditions (autisim, childhood stroke, etc) and one thing led to another, and before I started kindergarden, my mother had swiched specialties to early childhood Special Education. Because she did that, and taught in rual schools, she helped thousands of children that would never have gotten the help they needed. So if God came to me and said "I can reverse your life and let you be normal, but your mother would stay a regular 4th grade teacher." I would tell him to keep it.
My mother is a super hero. And so are you.
Vicky, Southwest Missouri.