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December 28th, 2011, 10:24 AM
C&K'sMama's Avatar
C&K'sMama C&K'sMama is offline
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Join Date: Sep 2008
Posts: 6,150
This sounds like just the right place for you!

Hi! I want to start off by saying that I'm sorry you're dealing with all of this. When Carrie started showing signs of delays both of our families did the denial thing. "She'll catch up" or "She's just a late bloomer" which I know makes it harder to deal with. It's bad enough to know that there is a delay with your child, but to have to defend your position is frustrating.

Have you had her checked out by an audiologist? You mentioned the lack of speaking, the ear quirk and even late walking can be from ear problems (bad balance caused by inner ear problems). Some state interventions have an audiologist that can check you child out, if not I'd try and get a referral if you haven't already seen one just to rule it out.

You situation sounds kind of similar to ours (Carrie's much further delayed) but she would NOT eat (have they given you tips to get her extra calories, like adding butter or oil to almost everything)? Carrie was a poor eater and also spent some time in the SCN (the military version of the NICU) because of poor breathing and she has also always been very light (in regard to her weight) for her age. I really do feel your struggle. It's good that you have a pedi who is on board and that you're seeking help for her no matter what the families think of it. Therapies (like early intervention) are the reason my daughter walks and talks. They are so so so very helpful.

Did they tell you how she did on the questionnaire?

I'm Alycia, mama to Carrie and Katie. Carrie is pretty severely delayed and Katie's showing signs of being mildly delayed compared to her friends. Katie is thought to be so because her sister is delayed (not genetically, but she's imitating her sisters delays). Carrie is undiagnosed and we've been told will likely not ever get one.

This is a great board for support Glad you found us!

"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
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