talking / walking

[imported_admin]

In response to the question of recurrence of A/M in a family- it is hard to say unless the sprecific cause of A/M is identified. I am a Certififed Genetic COunselor who has worked with ican for 9 years. Please fell free to call me at 215-456-8726 to ask any questions or discuss concerns. I would be happy to discuss your child with you and to rpovide any info I can.
Tanya Bardakjian
215-456-8726

[Candys7]

Gayle and Ann,

I recently came across your posts from back in 2005 about walking and talking. I would love to hear how your children are doing now. My son, Andrew, who just turned 5 and has bilateral anophthalmia, doesn't walk on his own yet nor talk much. He does try to talk and can say a few words, but it's been a very slow process. He really responds to music and tries to sing along though it's more 'sounds' than 'words.' Just in the last year we found out that he has SOD (septo-optic dysplasia) which can cause a lot of developmental delays. At a recent conference at the Wash. State School for the Blind, I learned that for a blind child not to talk means that there has to be other issues going on because blindness alone won't cause a child not to talk.

Andrew was in early childhood services until 3 and has been in our local school district preschool the past 2 years and will be there another year or two. Plus we have him in private therapy (speech, PT, OT). Unfortunately, NO ONE in our area has training / prior experience in these areas for blind kids -- even at school. Yes, he has a VI at school and I really like her, but from all the information I've gained over the years, more could be done for my son. Andrew is the youngest of my 5 kids -- all boys. Our closest in age to him is 11, so I'm lucky to have some pretty good helpers.

I'd love to hear how your kiddos are doing.

LeAnne

[Leatta]

I must disagree to a point. Blindness alone can be linked to delays in development, even speech.

However, I agree that blindness alone cannot explain pervasive (severe, therapy resistent) delays. I would hate to see parents get in a panic just because their 24 month old is only saying 10 words or their 18 month old just started taking steps. Therapy is so important especially OT starting at 10 to 12 months. Later PT and speech may be needed and hopefully by age 3 or 4 a certified mobility specialist and by 4 a certified visual impaired teacher to start pre-literacy skills.

I have a child with bilateral anphthalmia and hearing loss and other stuff, but I also work in the field and know early delays (through about age 9) are not good indicators of future performance.

[concerned_dad]

I have a 3 year old daughter who has bilateral anophthalmia. She cant walk or talk or even sit up. She can say a few words randomly but is unable to recall them.She had brain surgery in July secondary to hydocephalus.(her brain was normal at birth) The doctors have no answers. We are very frustrated and need help. Anyone with info please help. ???

[aprilk24]

HI! Sounds like a tough situation you are in.... we found that if you are not happy with a Dr., occularist, or specialist; keep looking! There are people that can help. You know more than anyone what your child needs. Hang in there. You asked about reoccurance in other births in your family. Have you seen a geneticist? Our geneticist told us that we had a 25% chance of having another child with micropthalmia or anopthalmia (my son has bilateral micro) if there was a genetic link they could find. They have not found anything genetic but still say that without the genetic link, we have a 10% chance. Hope that helps.