Thursday, October 27, 2011

Confession Time

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 worry.

I fret.

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?



  1. She'll get there. She's got you for a mom. Which means determination runs in her blood. Plus, eventually she'll want to get a word in edgewise. :)

  2. I don't have any words of advice...we are only at 8 months. I have that fear too. I worry about Hailey communicating with us and the world. Praying that Ellie will want to tell you about the world soon!

  3. My little one is 5 and does not point or speak. No interest. She loves to sign "more" ... and I was so thrilled when she first started doing this. However, "More" has become a sign that could pretty much mean anything ... essentially it means that she wants something. She can also sign "eat" and "all done" but often with prompting. When I look back, I can see that she has made many communication gains in the past year. They are just so slow coming. I too am worried.

  4. Up until this past September Avery barely talked either..she signs alot and it prompts her to talk more but I really noticed her talking more when she started school and was around all the other kids who were talking.. There are so many times when I cant understand her and what she wants and it is so frustrating but i hope we will get there!!

  5. My niece, Lauren (who is 3 and 1/2) was the same way until very recently. She can sign like nobody's business, but she would not make any noises -- except for what we called her "Yell." She is now really trying to use her words. I don't want to say we had "given up" --but more like we decided to just let it happen on her time rather than forcing it on her. We just talk to her as we always have, and she is now starting to talk back to us. She still SCREAMS at us sometimes when she is frustrated, we know that eventually, in HER time, that will improve as well. Ellie will get there too, just in her time. --Praying for you guys!

  6. Ellie seems a good bit older than Kamdyn, so I don't know that I have any real advice. I agree with you about all of the different areas that need to be present for them to sign. There are so many different things that have to work together. It really is a complex thing. We had issues with Kamdyn screaming during meal times. She pretty much made every meal time miserable, until we went to a feeding specialist, who basically said, "Don't give it to her unless she signs." Now, she has to sign instead of scream, or she won't get it. It has worked in that instance, but if all the areas aren't there, or there is low muscle tone in the hands, it would make it hard to do many of the signs. Kamdyn also has her own adaptation of a lot of the signs she does. They aren't exactly correct, but I know what she's trying to do. I'm sure she will be able to communicate with you as you keep working on it.

  7. Nathan says some words but signs very little. However, he learned how to do a High Five in about 15 seconds (and now does it consistently). It's very frustrating, but I know he will do things in his own time, as will Ellie.

  8. I am sending you big hugs right now!!! I wish I had some advice for you, but I don't, as our Madi is 10 months old. But, I will be praying for you. :)

  9. I don't have the answers, of course. I had this same fear for Lily and myself. I would see other kids who had Ds and were quite a bit younger communicating up a storm and thought...when's it our turn. I'm happy to tell you that almost 3 1/2, Lily is starting to find her voice (not the screaming and grunting voice either). I truly don't know if school has made a difference or not, but she's really started taking off since it started.

    Big, big HUGS, momma!! Love ya!


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