I can understand your apprehensions, especially since you have lupus. The only guide I can give you regarding your daughter’s situation is that CP is not a progressive disease. You daughter does appear to have a severe form of CP, but her situation will not deteriorate due to progressing CP. Her needs of today will continue in future as well. So, either she can be looked after by her siblings or she would need to go into facilities looking after adults with disability. Also, you need to find out whether she has lupus or not. You could talk to her doctor regarding the help available around you for adults with CP. Take care!
The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.
Hello, Mommygrove. While I do agree with the doctor that CP is not degenerative, I think he is sugarcoating it just a tad. I would add that there are other complications that coexist with CP. For example, osteopenia and osteoporosis because the child is not a weight bearer; may stay indoors more than outdoors in sunshine (need sunscreen anyway if out) and may be vitamin D deficient; scoliosis (especially girls and manifests around puberty) which can put pressure on airway/lung capacity; obesity if diet/exercise is unchecked; any complications due to surgeries to correct some of the conditions listed; depression due to lack of opportunities to be typical and with peer groups.
Does your daughter have friends? Is she connected with a hearing impaired peer group? Go to church or other activity where there is an interpreter? Is she involved in after school activities such as adaptive sports? Does she access books on tape? Does she craft/paint with skills she has? Are the friends of your other kids also a friend to your daughter?
I have a teen daughter who is, like your daughter, brilliant. She is more physically capable than you've described your daughter, but she is still limited. For us, she will likely always live at home under our care or care that we provide. When my husband and I can no longer care for her, she will probably remain in our home and her care be directed through a will and implemented by her siblings. I do think there will be homes at some point for young adults who need medical management, but for now, those harms are typically nursing homes for aging adults. Most "homes" for young persons are geared for adults with developmental disabilities and are not "medical models" for kids like ours. I actually think you will be surprised at the great life your daughter can have.
I would be glad to talk more with you about how we have approached some of the obstacles and coexisting conditions.
I would like to add how terribly sorry I am that you have lupus. I have a very close family member who had lupus. It is just devastating to the body. Put your oxygen mask on first so you can best help your precious daughter.
best to you and your family
I read your comment to mommygrove and I can completely relate....as I too have a teen daughter with cp. So glad I ran into this site. Hopefully we can share more on this!
In our community, we have sheltered workshop for people who have multiple disabilities. We alps have apartments for handicapped people along with help
from DDD have a live-in aide. So they can work and live within the community. I live in Kennewick, WA where Columbia Industries serve many handicapped individuals, who they place in jobs in the communities to jobs within a sheltered setting. The apartments are in Richland, WA which is just over the river. Hope this helps :)
Hi my name is Mike and I am 26 years old. I live in Arizona, moved here from W.V.becuase of the cold. I have Athetoid cp. I am like your daughter in many respects except I do not have a hearing problem. Their is a lot to say but I would rather talk to you one on one. Please feel free to call me as I have a lot to say and explain to you. Number one thing that I will tell you right now is don't put her in a self contained class if you absolutely don't have to. Demand an one on one aide for the regular classroom. It's her right to be educated with her peers. Please contact me anytime as I am just about always awake. You may text if you can it is easier for me. 623-329-4506