Thursday, October 27, 2011
My daughter does not point. She does not form words with her mouth. Ellie has trouble forming signs (see, that she does not point).
Here is my confession: I fear that my daughter will never talk.
Ellie has only a few words. Okay, 3 to be exact or four if you count the one and only time she said "more". "Mama" for Andrew and paired with the sign "Dad" and "dog" which sounds like "a-vah". She also says "oo" for shoe on occasion.
She also has a handful of signs. These are signs in which both hands make the same movement such as the signs for more, eat, water, music, cracker. Any signs where the one had must do something different than that other is nonexistent. Any sign where the fingers must be separate, i.e. pointing, #3, or letter Y is nearly impossible for Ellie to do. . . YET. It is as though her brain-to-hand communication is interrupted. She tries to sign. She really tries, but it all comes out as a macarena-like hand movements of fists and flat palms. I do not understand her.
I fear that it will always be that way. That I will not understand her.
Andrew and I make different sounds"puh", "mmmm", "ba", etc until we are blue in the face. As do her therapists. Ellie rarely even tries to imitate. It just isn't important to her.
I am at a loss.
I start thinking and I do not like where my thoughts take me.
This fear actually started just after Ellie was born. You see, I have this really cool aunt who happens to have Down syndrome. Aunt Peggy is an awesome woman with a fantastic sense of humor. The thing is, unless you are around her frequently, she is very hard to understand. Yes, she does talk and believe me she can talk up a storm, but her pronunciation and annunciations are rather poor. I remind myself over and over again that she was born in the 1950s. You know, pre-Early-Childhood-Intervention era. Yet I worry about Ellie. Will Ellie be able to communicate well enough to get through school? To hold down a job? To verbalize her needs and wants?
Communication comes in many forms. There is verbal communication and nonverbal such as signs and pictures. There is also the Ellie version called SCREAM. There are various dialects of SCREAM such as Robert Plant, Axel Rose, Eddie Veder, and Steve Tyler SCREAM.
There are many pieces that must come together for speech and signing to happen. Cognitive understanding, fine motor skills, facial muscle tone, and motivation. Those are just to name a few and many of those areas have delays in people with Down syndrome. Ellie is motivated to sign, but I am seriously questioning if she is motivated to vocalize outside of SCREAM at this point in time. It isn't like we reward her with SCREAM. In fact, Andrew and I are skilled at tuning out SCREAM. We have been using flash cards, Signing Time! DVDs, reading lots of books, ABA therapy, and speech therapy to help with the cognitive component. We have various toys and activities to isolate her index finger and to also develop other fine motor skills needed for signing. Ellie drinks apple sauce and pureed veggies through a straw to strengthen those oral motor muscles. Yet I feel like we are at a plateau. Will she ever point? Will she ever hand me a picture to communicate her needs rather than just mouthing the picture? Will she ever get beyond signing "more"?
I know in my heart her communication can only get better. I know this and yet, I still confess that I have this fear that Ellie will never talk or sign appropriately.
In the meantime, I would love to get some tips from all of you. What do you find helpful in promoting communication?