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

Tuesday, June 8, 2010

New Speech Therapist

To date, we have had 4 sessions with our new ST. The new assignment feels better than the previous one so we have made a step in the right direction.

In a nutshell, our new ST seems to take a more scientific approach when it comes to figuring out Oia and her language struggles. That, I appreciate. She has spent two sessions performing intelligibility tests and really listening to hear what Oia's errors are; articulation and/or phonological. It seems to be at this point the obvious obstacle to overcome is a significant phonological disorder, though this is not her only issue. This came as no surprise.

A phonological disorder differs from an articulation disorder simply because it is a rule based error process. They sound exactly like an articulation disorder when someone speaks but an incorrect 'pattern' is heard by a trained ear. Oia 'talks' all day long but we have little clue what she is telling us.

The good news is that it is not uncommon for toddlers to have such a disorder but by natural progression, most overcome this. The bad news is that this won't be the case for Oia; some natural progression, lots of intervention.

ST says the way to begin correcting a phonological disorder is to teach Oia to imitate our sounds, mouth movements, etc. This means Oia has to first be interested enough to stop whatever it is she is doing, look at us, focus on our mouths, listen to our sounds, and in turn try to imitate. I can tell you, this is not likely going to happen anytime soon. We try but we are dealing with a girl who walks just to walk, never slows down, and who has a mind of her own. On top of that, her attention span is almost nonexistent. Plus, there are things that Oia has never done with her mouth before, like stick out her tongue, smack her lips, or even lick her lips. Kids with CP literally have to be taught EVERYTHING. Nothing comes instinctual.

So, speech is still a frustrating topic of conversation for me. I still dread our weekly hour sessions that still look like playdates but at this age I realize that 'playing' is the only approach. I have surrendered to the fact that ST is a gray area of therapy that has no cut and dry answers or immediate resolutions, at least for the very young. In Oia's case, we are at the mercy of multiple issues beyond our control.

Rob and I discussed this over dinner last night. We know that adults who have a stroke can regain the ability to speak partly because they once knew how to and so retrieving language is possible again. With Oia, one who has never known how to talk in addition trying to overcome the effects of Schizencephaly, learning the rules and patterns of language is a tall order and extremely difficult. We've been warned by her neurologist it would be.

My gut tells me that in Oia's own sweet time, she'll communicate somehow. Will speech therapy help? Perhaps. Will it speed the process along? Maybe. Will she speak well enough so that people other than Rob and myself can understand her? Who knows. I have hope she will.

For now though, it's a waiting game that leaves me feeling frustrated, helpless, heartbroken, and tired. I so badly want to hear those thoughts inside her little head. I want to answer curious questions; over and over and over again. I want to hear funny 2 year old stories from my 2 year old. I want to hang up my role as mind-reader. I want these things for me, but even more so, I want them for Oia.

Some days, I think I'm okay with Oia's speech delay. Then other days I feel if I could only understand her, I'd know her that much more.


  1. We don't have to be taught everything, technically. Sure muscles may not be used in the "correct way" all the time, or ever. BUT we know all kinds of things people don't know, like theaband colors and what they mean :)

  2. Oh Mo, I remember feeling those same feelings when Faith was younger. It was so frustrating! With all I see from Oia, I think she will do better than you fear. When Faith was Oia's age, she barely made any sounds at all. And now she is really trying to talk! But beyond that, as she gets older the frustration will diminish and you will get used to her ways of communication and hardly ever think about it! It will get better! She is such a rockin' little girl and determined and that counts for a LOT! Hugs and some encouraging thoughts....

  3. I love this bloggy world we live in. I really do.

    I see Oia and ALL is see is that she can WALK. That amazes me. Ben cannot walk. We are a VERY LONG WAY from walking. And I hate it. I hate seeing Daniel running around...exploring his world...and then seeing Ben struggle to crawl.

    But Ben has Speech. And I love that he has Speech. But Oia doesn't have Speech. And I hate that. I hate that you don't get to enjoy her words. Her thoughts. Her funny little 2-year-old words and thoughts.

    I'm not exactly sure of the point of this comment...except to say that I love this bloggy world. We're all given such a different "lot in life"...but in ways it's all so similar.

    I'm glad you have HOPE. Because without it, where would we be?


  4. Those words will come. My son is almost 8. His first audible word was at age 4. We understand him and his little sister does as well, but still others don't. One day my son got mad at me and out of no where said "leave me alone" what a surprise. Even if she is not talking yet, she will. She is soaking up everything and one day it will come out. You will get to experience what it is like to have a typical 2 year old but it maybe when she is 4 or 5 or 6, like us.

  5. I get you...do I ever. It IS heartbreaking and frustrating and hard to not hear your child speak. I, too, long for those two-year-old funny questions from MY child. Speech is a much more complicated thing than I ever realized. It's amazing any of us can talk, really. Oia, from what I can tell, has made a lot of progress. Elijah mostly just makes a lot of noise (no words that he uses consistently) and I have a lot of the same hopes you do - for him to be able to verbally communicate with others. I continue to believe that he will get there (crazy as it may be). There is nothing wrong with having hope for our children. I'll be standing beside you, hoping for Oia and for my Elijah too. HUGS. :)

  6. I've spent a very long time trying to let go of Charlie's talking. He has major motor planning issues and at this point, I just dont' know how he will overcome them. That doesn't mean it won't happen--just that I don't see a clear path from here to there. So we work on augmentative comm and hope for the best--what else can you do?

  7. I believe that every child has their own timeline....and with help (and you are getting so much help!) she will talk. I just know it. And when she does, it will be that much sweeter.

  8. Mo,
    I check in from time to time on Oia's progress thru your blog. I am always inspired by the love and care you and Rob share with Oia as you take this journey of life together. What a blessing you all are!
    Jennifer Tripp

  9. Hey Mo,
    It's okay to be impatient and frustrated with the speech thing.

    You know what's good about Oia's language progress, though? Other people can understand some of her words, too--not just you. And she can communicate with others, I know she has with E and myself. I agree with the other posts here--words WILL come. You just do what you can to make it happen.
    You and Rob are doing a great job! Don't forget that for a minute!