BellaOnline Forums Family Special Needs Children 3.5 yo daughter doesn't talk: HURLERS SYNDROME

HI MY NAME IS KATHY PRESTON AND I HAVE A 3 1/2 YEAR OLD DAUGHTER AND SHE HAS HURLERS SYNDROME IT IS A GENETIC DISORDER.SHE IS MISSING A ENZMYE THAT FIGHTS OFF A SUGARY SUBSTANCE THAT ATTACKS THE JOINTS.IT COULD MAKE HER BLIND AND DEAF AND MENTALY RETARDED.SHE LOOKES LIKE ANORMAL 3 YEAR OLD EXCEPT THAT SHE IS LITTLE SHE DOES ALOT OF THINGS THAT A 3 YEAR OLD DOES BUT SHE DOESNT TALK.HERE IS HER WEB SITE IF YOU WOULD LIKE TO VISIT IT.www.caringbridge.org/ky/katilynnsmom i am so glad that i found this web site and cant wait to talk to others. <img src="/images/graemlins/smile.gif" alt="" />

This is the first time that I've come accross this forum and your post just caught my eye. I also have a 3.5 year old daughter, Natalia (born in August 2001) and she also doesn't talk. She suffered from seizures when she was a baby but has outgrown them.....She has a very mild developmental delay (you wouldn't know it at first glance) except that she doesn't have verbal language. Her comprehension is also behind and she is not too interested in learning "other" modes of communication.
How does your daughter communicates with you...do you use signs or pictures etc. I'm always on the lookout for new things to try (very fustrating <img src="/images/graemlins/tongue.gif" alt="" />

Iwonka

Welcome to BellaOnline!

I would love to read more about how both your daughters communicate without speech, and what they enjoy out of the strategies that the early intervention and preschool staff might have suggested.

Here are some resources from the Family Village advocates that might be of interest to you and any early intervention or preschool staff who work with your daughters. Sometimes they need a little extra information after they graduate from their school programs to discover strategies and accommodations that work very well for little ones with communication delays.

Wishing you all the best,

Pam W

Assistive Technology for Students with Disabilities
[url=BellaOnline ALERT: For anti-spam reasons, we restrict the number of URLs allowed in a given post. You have exceeded our maximum number of URLs.