parents of disabled children
Topic: parents of disabled children

Post #61
1 reply
Samantha replied to Roy's poston June 11, 2009 at 12:44pm
we ave just found owt our son phoenix-kai has cerabal palsy we dnt love him any less than our other kids an we dnt treat him any different just cos he has this im not bein ignorant but cud u tell me do children wiv cerabal palsy end up in wheelchairs an can thay lead a pretty normal life nobody will tell us anythin till thay have finished all the tests we dont know how bad he has it

Post #62
1 reply
Roy replied to Samantha's poston June 11, 2009 at 6:37pm
There is a huge range with cerebral palsy. My 2 daughters are at both extremes.
Hope walks, talks, and does everything other children her age do and just as well. She's done some things slightly later than other kids but she always catches up and, unless we tell people, they don't have a clue about her brain injury.
Emma, on the other hand, is quadriplegic, legally blind, unable to speak, unable to even eat so she has to be fed with a feeding tube, and she's severely retarded. She can't even suck her own thumb and will be profoundly disabled for her entire life.
The important thing to remember is most people with cerebral palsy lead positive, fulfilling lives, even those in wheelchairs. Once you get over the "tragedy" of your son's diagnosis you will also find there comes a great blessing with a special needs child.
Another thing to remember is cerebral palsy doesn't get worse over time. In other words, wherever your son is at now with his development, it can get better but it's not going to get any worse. If he's starting to walk he will probably get better. If he's 2 years old and not walking, a wheelchair is a possibility but even then these kids prove doctors wrong all the time.
Keep in touch. That's why we're here.
Hope walks, talks, and does everything other children her age do and just as well. She's done some things slightly later than other kids but she always catches up and, unless we tell people, they don't have a clue about her brain injury.
Emma, on the other hand, is quadriplegic, legally blind, unable to speak, unable to even eat so she has to be fed with a feeding tube, and she's severely retarded. She can't even suck her own thumb and will be profoundly disabled for her entire life.
The important thing to remember is most people with cerebral palsy lead positive, fulfilling lives, even those in wheelchairs. Once you get over the "tragedy" of your son's diagnosis you will also find there comes a great blessing with a special needs child.
Another thing to remember is cerebral palsy doesn't get worse over time. In other words, wherever your son is at now with his development, it can get better but it's not going to get any worse. If he's starting to walk he will probably get better. If he's 2 years old and not walking, a wheelchair is a possibility but even then these kids prove doctors wrong all the time.
Keep in touch. That's why we're here.

Post #63
Samantha replied to Roy's poston June 11, 2009 at 6:51pm
thank you so very much for answerin me i have blamed myself for this since we knw thinkin did i do something wrong to make him have cerebal palsy i know now it wasnt but it dont stop you thinkin that an i bet im not the only person who thinks that at the moment were we are at thay have given us the chair an table and a standin frame he can say 2 things he cant sit up or roll ova he can only eat the very first dinners (baby)i dnt love him anyless than my other kids treat him the same as them im just findin it very difficult to accept theres something wrong which i think most parents go through

Post #64
Samantha wroteon June 11, 2009 at 7:05pm
you have 2 very beautiful daughters thank you for replying

Post #65
Susan wroteon June 23, 2009 at 9:24pm
Hi. I'm a mom to two beautiful children. My youngest is 3 years old. She has a metabolic syndrome of some kind, thought to be mitochondrial disorder. She has an undiagnosed genetic syndrome. She is 100% G-tube fed. She is developmentally delayed, but has made AMAZING progress with therapies. I do not work any longer, I was let go when she was 16 months old and was on FMLA on and off from the time she was 6 months until 16 months old. Anyway, hi!

Post #66
Dennis wroteon June 24, 2009 at 8:48pm
Hi, I'm a single dad of a 10-year-old boy with high-functioning autism. Don't overlook those closest to you when you're looking for a care provider. After all, until your child was diagnosed - not all that long ago - you likely didn't know anything about autism either. Let your friends and family learn along with you and DO NOT withdraw your child from them. When your child's behaviors (yes, we spell it wrong here! ;-P) become a source of embarassment, it's time to recognize that the views of those who don't understand simply don't matter. And, when your child is melting down, a keyed-up parent increases the stress level for them. Life is tough enough on these kids, they do NOT benefit from having the one person they trust suddenly turn on them!
I've spent hours sitting on the floor, hugging and rocking my son in the grocery store aisle, shopping center parking lot, even at my desk at work on Take Your Child to Work Day. Those with any kind of compassion will respect you for putting your child's needs first. Those without it, who cares?
One other thing while I'm up here on my soapbox. You will learn the most wonderful things from your special needs child - embrace them and be thankful for every day you have with them!
I've spent hours sitting on the floor, hugging and rocking my son in the grocery store aisle, shopping center parking lot, even at my desk at work on Take Your Child to Work Day. Those with any kind of compassion will respect you for putting your child's needs first. Those without it, who cares?
One other thing while I'm up here on my soapbox. You will learn the most wonderful things from your special needs child - embrace them and be thankful for every day you have with them!
Post deleted on July 1, 2009 at 8:30pm

Post #68
Kelly replied to Clare's poston July 20, 2009 at 8:02pm
I too have a son with Autism and went back to work a little over a year ago. I work in the medical field so I am able to work the night shift of 7pm-7am that way my husband stays home with the children during the night and I am home by the time they get up. Good luck to you.

