Sue-
My daughter is going to be 12 in Dec. This is a great age! Seems like
she's learning so much so quickly!
We have 4 children. Actually, my husband has 4 children who have been
living with us for the past 8 yrs. I'm very lucky to have these kids
in my life! I'm not allowed to use the word "step" when describing my
kids or myself. Get really dirty looks from all of them!
Anyway, J was diagnosed with CP when she was about 10 months old. She
has used a walker her entire life as well as a wheelchair for better
mobility. She's been going through a growing spurt lately and is
spending more and more time in the chair.
J speaks, but with great difficulty. You have to "speak" J in order
to understand her most times. She's in physical, occupational and
speech therapy. Her fine motor skills are pretty delayed, but she
tries hard most of the time. Of course like most kids she goes
through stubborn stages where she doesn't like to do things for
herself.
I guess what I'm looking for is support and information. I don't know
anyone else who has a child with CP and because we have 4 children I
don't get a chance to meet many people.
I think I have the same worries as most other parents with a disabled
child. Am I doing all that I can for her, am I doing too much?
I read all that I could get my hands on when she first came to live
with us. I talked to all of the doctors and therapists who would sit
still for 5 minutes and explain things to me. But I still feel lost
sometimes.
I hate to sound stupid, but it only just recently dawned on me that J
will be living with us for the rest of our lives. That's not the part
that worries me though, I can't imagine our home without her in it!
What happens to her when we're both gone? Who
takes care of her then?
I'm also having a hard time with the schools. It seems like every
week there's a new battle to be fought to get J the things she needs
so that she can be taught the way she learns.
Maybe I'm just a little overwhelmed by it all, but I don't want her
to miss out on anything in life. We want to give her the
most "normal" life that we can. We want to prepare her for life in
the "real" world. One where people won't always be nice, where people
may try to take advantage of her, one where there isn't always a
handicapped bathroom available.
How do you all deal with this every day? Do you get overwhelmed? Do
you keep yourself awake at night worrying about their future? Am I
over-reacting?
Anything anyone can tell me would be helpful. Consider me a sponge
ready to soak up any helpful knowledge you all are ready to share.
Thanks, I feel better already.
Staci