a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Thursday, February 18, 2010

Expressive Language

I'm sure that raising any child always makes a parent feel like there is something to worry about but the worry and question is intensified when your little one is developmentally challenged. Often times, the worry and question can consume me.

We, rather Oia, has come so far. Physical progress has been remarkable. Last February Oia was only a sitter. But here we are today. She crawls. She walks. She even walks fast when she wants to. She can squat to stand without falling. She climbs. Her receptive language is age appropriate. But..............she doesn't talk. Let me clarify; she is vocal, makes LOTS of purposeful sounds, but she is not yet considered verbal. She has a few words and some more are slowly emerging but this is obviously a very, very, difficult area for her.

Oia is seen by a speech therapist every other week. She began ST just before her second birthday. I've never been convinced that speech therapy makes much of a difference. I realize ST's are trained and skilled in what they do but an ST session looks like a fun playdate to most.

Here is our situation.

Oia drools. She no longer needs to wear a bib anymore but by the end of the day she does have a wet shirt and some days it is more wet than others. The drool means Oia has some low tone issues in her lower jaw. So we've been told. However, she is a neat eater, eats ANYTHING, any texture, and can drink from any sippy cup or straw with no problem. Everything stays in her mouth. In my opinion, tone can't be too much of an issue since Oia can do these things. This is a huge plus where language is concerned.

Oia understands. Receptive language is age appropriate. She goes where I ask her to go, she gets what I ask her to get, and she does what I ask her to do. Another huge plus in the language department for sure.

The problem I feel is that I have no solution for that tiny, little hole in her brain. I can't change it. I can't fix it. Schizenchephaly leaves it's mark and it never goes away. This hole is making expressive (verbal) language very difficult for her. My hands feel tied with this one and I certainly can't speed up the process.

If someone a year ago today would have told me that Oia's biggest deficit (or challenge I prefer to say) would be expressive language, I would have never believed them. Not for one second. As soon as we learned that Oia had cerebral palsy our minds raced to the physical aspects. Would she sit, crawl, ever stand? And the most heavy of all wonders; would she ever walk?

Now, I'm wondering, 'My goodness, will she ever be able to talk?'

(Note to self: Be patient. Be content. Be thankful.)


  1. Mo, my heart aches for you as I read this post. I have been on that boat for six long years. At first it was agonizing...wondering, waiting, praying, bargaining. But as time went on acceptance came to our house. We came to accept that Faith understood us, she could play and do lots of things that they never said she would do. BUT speaking was not one of them. She made sounds but nothing close to words except repetitive "dada" sounds. Then after 5 and a half years, this summer she started trying to talk! She can approximate over 50 words (words we understand but most people don't). My point in telling you this is, as you know, it is so subjective when/if kiddos like Oia and Faith do things. It all happens when we think we have given up. Maybe she will maybe she won't. But I bet in a year or two she might suprise you. I came to the conclusion that, although I wished Faith would talk, if she didn't I could live with it. I knew what she wanted and she knew what I told her. Even now, her therapists always remind me that often kids like her do develope "some" words they often do not develope true complex language skills and requiren the use of aug. comm. devices. Faith still primarily uses ASL to communicate with people outside of our family and that's ok with me. I know the waiting is the most painful part. HUGS...

  2. Hey, Mo. Let me just say, it is AWESOME that Oia is able to eat so well and sip from a cup. And that her receptive language is so good. In my unprofessional opinion, that bodes really well for speech development. Because, as you know, a good part of that is how well her little tongue can move. She may have neurological issues, but at least she doesn't have tongue-muscle issues, like Max!

    I will echo what Candace says which is, it's hard to have patience, but you just don't know—so have hope! Max at 7 does not have speech like you or I know it, but he has a bunch of words, he has a device, and he makes his needs known. We have grown into his abilities. I am happy with his progress, I accept (more or less) that he won't talk like me, but that is OK. Because overall, he is bright, and doing well, and I am so grateful for that.

    Mo, trust me, all that said, I know exactly how you feel. It is so hard not knowing. But, and I'm not just saying this, those are some great signs. Have you ever spoken with a speech therapist about the use of the PROMPT technique? http://www.promptinstitute.com/

  3. Candace and Ellen,

    Thank you for the kind and uplifting words. If we only had a magic ball...but I guess that would just spoil the thrill of the ride on this special day-to-day journey wouldn't it?

    Ellen, I'll check out the PROMPT technique and run it by our ST. I'm very interested in change or new approaches in this area.

    Thanks again ladies. Hugs to Max and Faith.

  4. I SO relate to this post in every single way. This is without question the hardest thing for us and the most heart-wrenching for me. I adore listening to children's voices and it amazes me what they think of and what comes out of their mouths sometimes! I know Chloe has those cute things going on in her mind and it breaks my heart that I don't get to hear them. But like Oia she is expressive and I do know what she wants/needs most of the time. We will never give up and I'm so glad I have your friendship and know that you truly understand. Thank you!!!

  5. I have to agree that talking...real talking is something that I long for. I think that it is the easiest way we connect, get to know our children. And when that is not there, we are left to fill in the gaps. Assuming what they may be wanting, needing or trying to express to us. We are left wondering how they process their world.
    Little voices are the best and we make due to the little sounds that we get.