Does Anyone Have Special Needs Kids?

Hi,
I too have a son who is 13 years old with special needs. He has CHARGE Syndrome, which many people and doctors have never heard of. He is deaf and visually impaired and many other health disabilities.

You can reach me at ____@____.com medical issues can be managed, but the school issues are so difficult. Our biggest problems has been in getting my son what he needs in school.

J.

Well, Happy Birthday to your little guy. Thank you for sharing your site and your sons story. Best of luck to you and your family, you will be in my prayers.

Hi, my daughter is a special needs child as well, although her exact diagnosis is unclear. Kamie is 2 years old and has seizers and is developmentally delayed. She is just starting to sit up a little on her own and is working on crawling. We can't find any reason for her seizures but they are finally under control with medication. It has been a long, and difficult road so far, but we love her so much! She is such a joy in our lives as her parents. And what better gift can we receive than the love of these children. They share it so easily and they love us even though we aren't perfect parents. I would love to talk to you! You may email me at ____@____.com What helps me the most is to take things one day at a time. The time tables and tests about when children should do this or that aren't important. Just having a child like ours with us for another day is all that matters. Keep smiling and enjoy what you do together today. You can check out our blog too Bartlettfun.blogspot.com

Hi J.,

My sister had a baby who was special needs. She was born with an extremely rare syndrome. There are currently only 5 children in the world that are known to have had this syndrome, all of the children are from NM. Sadly only one child is still alive. My niece passed away 5 years ago when she was only 16 months old. My sister currently volunteers for the Children's Hospital and talks to other parents who have special needs children or parents who have lost a child.

I'm not familiar with the illness your son has but I will get on his website to learn more about it. I have epilepsy so I know how hard that can be. I will keep you and your family in my thoughts.
R.

Hello J.! I too have a special needs kiddo. His name is Zak and he is 13. He has Duchenne Muscular Dystrophy, he was diagnosed at 9 months. This disease runs through my family although we had hoped he wouldn't have it when he was born. It's a muscle wasting disease that gets passed from mother to son. Or it did in our case. I know it's tough but hang in there. :-) If you want to talk my email is ____@____.com

hugs to you and your family
R. W

Hey J.,

My name is L., my husband I have two kids. A 1 year old son named Mathias and a 1 month old daughter named Scarlett. Scarlett was born with severe brain damage, they still don't know the cause. But she is a special needs child and i've been looking for other mom's with kids who are special needs too. E mail me sometime, ____@____.com