Future for Adults with CP

I have an 8 year old daughter with severe CP.  It affects her entire body.  She has one good hand that she can use to feed herself (finger foods, no utensils) and drive her power wheelchair.  She is also Deaf so she uses it to sign.  She is cognitively normal (I think she is brilliant) and is on grade level in every subject but reading (her eyes struggle to move across the page).  

My question is, "What will her life look like as an adult?"  All of my other children, I have a vision of where they are heading and so it makes it easier to make educational and general goals for them.  I understand what is important for them to learn, activities that will help them be the adults they need to be, etc.  But with my daughter with severe CP, I am totally lost as to what her adult life will be.  Will she always have to live at home?  If not, then where?  She cannot transfer herself to her wheelchair, she cannot brush her teeth, get dressed, use the restroom, make a cup of cocoa, etc.  She needs assistance for the littlest tasks.  But in her brain she is normal.   Her body just does not cooperate. I don't think she would be happy in a nursing home full of elderly.  But I have Lupus and will not always be around or healthy enough to care for her needs.

She is going to have much of the same desires as her siblings but how do we accomplish them?  How will she be independent?  What kind of jobs can she hold?  How can I help guide her in a world that I do not understand (her world)?  What college courses should she take, what majors would be appropriate?

Maybe it is too soon to think about all of this, but I really feel like we need to make some plans and goals now just like I do with my other children.  

Please help!  I would love to hear from others who have experience with adults with severe CP who are cognitively normal.  What do their lives look like?  How could their families have better prepared them or set up a better support system?

Thank you!

[Dr. Kokil Mathur]

Hi!
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.

[courtney48]

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