http://apps.facebook.com/chasecommunitygiving/charities/311682518-international-rett-syndrome-foundation?src=charity_share
While playing around on Facebook today (just like every other day), I typed in "Rett Syndrome" into the search box. I found this link on the IRSF (International Rett Syndrome Foudation) and watched the video that is posted on there. A 12 year old boy made this video about his sister. I watched this twice already, aren't able yet to view it a third time because I am at the present time too emotional to be able to view it again and keep it together. One of the characteristics of Rett Syndrome that Alicia has is not being able to speak. So many times I have told Hailey to "be quiet" for various reasons and we all hear it from parents while shopping, in restaurants and out in public. I am ashamed to say that I even tell my oldest daughter that while my youngest isn't able to speak to me. So many parents take for granted the fact that their children can speak to them. I do get "Hi" from Alicia and "Mama" when she is very upset. My husband sometimes gets "Hi Daddy" and Hailey sometimes gets "Hailey". We were ecstatic last year when Alicia's speech pathologist got her to say "Up" meaningfully. But it was not meant to be as we now only get that very sporadically. The day her paraprofessional, speech pathologist and special education teacher brought her out of school at pick-up and had her say "Up" on command, it brought us all to tears, it was one of the happiest days of my life. I was also able to get a quick video of her saying "Hi" and will treasure it always. NEVER TAKE FOR GRANTED YOUR CHILD'S ABILITY TO SPEAK!!
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