If you have a child with special needs, you understand the pain of these two words. We will fight with all we have...If we can not get an IEP appointment on Sept 2, Caitlyn will not be starting the school year. I made it very clear today that I will not be sending her into a life skills program. I will not give up on my daughter. Do you have any idea how much doubt the school district will try and put in your head? I am so sure about what we are doing, but I still got off the phone and was in tears. I felt like I was some how letting my daughter down. Why do I let them get to me...I feel so defeated. But we will stay strong.
I am still without internet at home...Hopefully soon! I'm wondering if anyone would like to have a blog set up so we can all share calorie boosting ideas? I'm willing to set something up in my free time if anyone is interested!
Thank you everyone for your support.
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3 comments:
Do not get down on yourself Rebecca. It is hard to convince "them" of our daughter's skills. Have you shown them any of the videos on Susan Norwell's site or any other rett girls on You Tube or other places? BE HER VOICE like I know you are and give Caitlyn a BIG hug from Brooklyn tonight.
I forgot to ask, did you get the books we sent her for her birthday?
We sure miss you having internet, we need to see pictures of our sweet little girl!
Oh yeah and I would of course be interested in any calorie boosting ideas, you know that!!!
good luck - you're doing the right thing. in terms of calories, two helpful things - (1) getting the food in her - we work on getting the right texture (our dd does not like to chew) and making sure it gets in and stays in her mouth; (2) we like dr. susana's sweetie tahini - http://www.worldbabyfoods.com/product/nutrition/nutrition.html - 100 calories in 4 oz. it's a little pricey but it's a great fill in
Rebecca, hang in there girl, you are doing the right thing for Caitlyn. They need to give her a chance to show them how much she knows, and how she communicates. I wish there was something I could do to help...I will be praying that everything turns out okay. I'll keep in touch by reading the blog. Don't give up...she is so worth it!!!!!
Suzy (Kelly's mom and Brooklyn's Grammy)
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