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Posted by Valerie Nobles on November 04, 1999 at 03:06:29:

In Reply to: Life Expectancy with CP posted by Laurie on October 05, 1999 at 14:39:50:

: What are the general guidelines of life expectancy with very severe CP?


I don't know how old your child is and what you consider severe CP; but CP, in itself, doesn't mean a shortened life span. My boys, who were both diagnosed with CP before the age of 3, were given 5-7 years to live. My baby doctor very matter-of-factly recommended I put them in an institution as soon as possible. Today my boys are 35 and 36, both with severe CP, but with no mental retardation or other medical problems. They are both non-verbal, and wheel-chair bound. Their biological father divorced me a year after the second baby was born, and I was thrown into the world of being a single parent, holding down a full time job, and trying to cope with raising two disabled children by myself. Life was not easy ... but it was managable and it was also very very scheduled. I was able to find a number of support services (free well-baby clinics, free speech clinics, free orthopedic referrals, reduced-rate baby sitters, and admission into a local physically handicapped childrens program). But these services/organizations didn't come to me, I had to really look for them. In the beginning, this took a good deal of my time, and was often very frustrating and depressing. But it did get easier as I got smarter and more educated in all the needs of persons with disabilities. The services that I thought I needed for the boys, but that didn't exist, I created (seeking the help of caring friends, neighbors, church members, school teachers, even high school and college kids). My goal was to give my sons as normal a life as possible and allow them to reach for the goals they had created for themselves. I remarried when the boys were 3 and 4. My time with my kids was quality time and so was my time with my new husband. Needless to say I was exausted at the end of each day. My new husband and I had a daughter of our own when the boys were 9 and 10. During the first 6 months of her life I must have asked myself a million times why I decided to have another child. After the 6 month adjustment period was over, this little girl became our personal angel. She was our recreation, our topic of conversation and another reason to count our blessings. She became very close to the boys, and in her own way became their personal advocate. Today my guys continue to be medically healthly, but they remain totally dependent on others for their care, non-verbal (they communicate with an alphabet board) and wheelchair-bound. The good news is that they both graduated from high school, attended college, and were active in our community (chess clubs, scouts, bowling, etc.). In retrospect, I don't know how we did it! They went to Yankee games, Bills games, Star Trek Conventions, Atlantic City casinos, and Disney World. They somehow managed to accept their limitations, to value friendships and to appreciate all the little things in life that most of us take for granted. Am I proud of them, yes, and I guess what I'm trying to tell you is that nothing in life is impossible if you have some sort of plan. We didn't always get exactly what we wanted, but if we saw progress, we felt a sense of accomplishment. You need set priorities and goals early in your child's life and you need to decide what needs to be done and who needs to do it (learn to delegate, it helps a lot): seek out local, county, state and federal support services (the more you have the better the chances your child will have of succeeding and the easier it will be on you); when you have meetings concerning your child, take an advocate or a friend with you (don't try to be super-mom and do everything alone); don't believe everything everyone tells you about your child (remember that you are the parent and the expert); don't spend all your time with your child (share the responsibility with others), it will be better for both of you; remember that you and your child do have rights (talk to the agencies that can tell you what they are and ask for their help); and remember that your child is a person and deserves to be given the opportunity to reach his/her fullest potential. Fullest potential for some may mean graduating high school at age 21; for others it may mean being well cared for and happy until age 10. Don't ever feel guilty; that's really going to be hard. Do what you think is right for your child and please try to take care of yourself too. I will be thinking of you often, and I hope that you found some comfort in knowing that others have shared your concerns and fears.

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