Your new textbox
What is your child's (children's) special need(s)?
- Rating: No Rating
I really am interested in meeting other moms who face similar challenges as we may have to (my daughter is still undiagnosed -- waiting on a skin biopsy). I thought it might be helpful for all of us to find "like" moms if we all shared what type of special needs our children have.
If my daughter's doctors are correct (and we are praying constantly that they are wrong), we will be dealing with a neurological metabolic disease also known as "childhood alzheimer's".
Carrie
http://www.littlemisshannah.com
If my daughter's doctors are correct (and we are praying constantly that they are wrong), we will be dealing with a neurological metabolic disease also known as "childhood alzheimer's".
Carrie
http://www.littlemisshannah.com
Replies to This Discussion
-
Permalink Reply by rondata on -
We have Williams syndrome -- Which is the not the worst disability in the world. While very developmentally delayed w/ heart problems and realizing that some have more problems than we do, they are happy, fun, loving, don't have the mental capacity to do anything evil to anyone on purpose. They're as close to an angel as I think I'll ever see. He's 8 now. We deal with the ups and downs. He may be never able to live on his own, but thankfully, I don't have to worry about that for awhile.
Rhonda
-
Permalink Reply by Dawn on -
Rondata, I am an assistant in kindergarten and had the pleasure of meeting a little boy last year with Williams Syndrome. Who knew there's a SYNDROME that makes one happy and social?? We should ALL be so lucky. He was a darling little boy!
My 11 yr. old son has a very rare syndrome called Ohdo Blepharophimosis and although happiness isn't a characteristic...he's a VERY happy (and social) boy. He's completely non-verbal and developmentally delayed, but also the joy of our lives. We adopted him when he was 8 months old and as my husband claims, "Yes, our son has special needs. He's special and we need him."
www.twitter.com/msdawn430
rondata said:We have Williams syndrome -- Which is the not the worst disability in the world. While very developmentally delayed w/ heart problems and realizing that some have more problems than we do, they are happy, fun, loving, don't have the mental capacity to do anything evil to anyone on purpose. They're as close to an angel as I think I'll ever see. He's 8 now. We deal with the ups and downs. He may be never able to live on his own, but thankfully, I don't have to worry about that for awhile.
Rhonda
-
Permalink Reply by Paula Di Fabio Fasciano on -
I am very new to this forum, and I have 2 boys ( 12 and 6) with Fragile X Syndrome. I blog about Fragile X and what life is like with them.
Good luck to you!
http://www.thefascianos.com
-
Permalink Reply by Lori Benton on -
I'm a mom to 3 children and my youngest who is 2 1/2 has severe oral sensory dysfuntion with no other sensory issues. It is so bad they we had a g-tube placed earlier this year and up until feeding therapy began a year ago, he only nursed. I've been trying to feed him age appropriate puree's and solids since he was 6 mths old. Thanks to intensive therapy of 4 times a day, everyday through our children's hospital last year, he does everything except chew - he does not know how to chew. I've had little support over this due to the fact he looks normal, just small. It's a long story, but in time this will all be a memory and for that I am blessed. But going throught this is hard because I know of no one dealing with this. I am a special ed teacher so I knew there was a problem at 9 mths of age when he would not take to food and never mouthed toys. I thought I had a child with SI, but proved wrong when other signs did not show up. My 2 older children never had any of these problems. Thank you.
-
Permalink Reply by Jean Myles on -
Hi Paula, your post just caught my eye. Our son was diagnosed with Autism at 18 months and was just reevaluated (gets it done every year) and the developmental pediatrician that did his testing this year suggesting he be tested for Fragile X. I may be in touch soon...
Jean
Paula Di Fabio Fasciano said:I am very new to this forum, and I have 2 boys ( 12 and 6) with Fragile X Syndrome. I blog about Fragile X and what life is like with them.
Good luck to you!
http://www.thefascianos.com
-
Permalink Reply by Jean Myles on
-
Our almost 3 year old is on the Autism spectrum. Since doctors and scientists are now looking at the genetic link of Autism more closely they are already concerned about our 9 month old. He will be evaluated very soon. Jaylen is high functioning. He is way above average in some areas, math especially. But very low in other areas, especially social and emotional.
Jean
- 1
- 2
Announce yourself!
Badge
© 2009 Created by Megan Calhoun
