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

Thursday, April 15, 2010

Seeking Change

I'm not sure that I have ever blogged about speech therapy before. Actually, I have not. To be honest, the topic frustrates me beyond measure and in recent months I have come to dread our speech therapy sessions. And I have to admit, I've never been an easy one to convince that speech therapy really works. I'm hoping that's just because I have not yet seen a speech therapist work their magic with a child and gain any significant progress from whatever technique or approach they chose to use. This goes for the ST's I've worked with in the public school setting as well as the one who works with my very own child. Shall I say, worked with my child.

I couldn't take it another speech session longer and keep my sanity all at the same time. Thank goodness for a wonderful Early Intervention Service Coordinator who has gone above and beyond the call of duty for us ever since we moved to VA and began the state's EI services. I called our SC yesterday and said in a nutshell...we need a change and this means a new speech therapist. NOW. It wrecked my day but it had to be done. I don't like making waves or hurting feelings but we are all adults in the picture dealing with a sweet soul who needs the best of any therapy around. Oia deserves nothing but that and in this case I felt she wasn't getting it.

A little background...Oia babbles constantly. All day long. She looks us square in the eyes and speaks Oia-nese but we have no idea what any of it means. It breaks my heart. She has a handful of words; yea, no, bye, hi, up, help, wake up, get up, what's this, go, mommy, and daddy are the consistent ones and a few others when prompted. She has been in ST since August. I knew very early into ST that the approaches taken were not aggressive or dynamic enough for Oia. Things seemed 'fluffy' and way too relaxed for my liking. Nothing was happening in the hour of ST that I wasn't already doing with Oia in our daily interactions together. However, I stuck with it for this long. Why? Because I am realistic and I am fully aware that progress in the CP world is very slow and progress certainly doesn't happen overnight. But, that's all the more reason to have a determined therapist who is willing to think outside the box to find a more direct approach that will really tap into what Oia needs. We have just 4 months left before Oia ages out of EI and I couldn't live with the regret of not seeking a change and wasting more precious days of what need to be full of engaging and meaningful therapy.

To be fair to any ST who has or will work with Oia, language is Oia's biggest challenge and for a very good reason. The placement of her cleft (hole) in her brain most interferes with her expressive language development. Our neurologist warned us of this. She communicates somewhere in the ballpark of a 15 month old and she is 32 months old. She is showing signs of frustration because of this gap between expressive language and receptive language. Her receptive language is age appropriate. She is a curious being full of thoughts, wonders, and questions with no way to express them all. I have become quite skilled at reading her mind but who would choose a mind reader over their own voice? Not Oia.

So waiting on a new placement...I may get to 'interview' a couple potentials before the final assignment is set. I remain hopeful. I know that with the right speech therapist coupled with all that Oia brings to the table already, she WILL talk.

And I can't wait...


  1. Good luck with finding a new speech therapist. It is the most frustrating therapy for us too. Gracie is non-verbal and right now our biggest need is a communication device. She is starting speech therapy at the hospital, again, next week. I am pushing very hard for some trials of any devices. I am done with using the paper PECS. We have tried them for years, and they just don't work for us.

    Please tell me where to get the cute eye patches!! I have to know!

  2. Yeah, we're in the same place.

    Katie has been in speech therapy for over 6 months and I spent 3 months going to Hanen Parents Speech Therapy training. Hanen is the method that most SLPs use...especially in Canada.

    She is also showing signs of frustration because of her gap between expressive language and receptive language. Her receptive language is also age appropriate...27 months.

    So far our SLP has rolled balls to Katie, blown bubbles and played with a shape sorter. It makes NO sense to me at all. The only guidance she has given me is pretty much... "don't ask questions", "repeat words 5-6 times" and "make it harder for Katie to get what she wants so she'll be pressured to speak". Gee thanks, why didn't I think of that. Seriously, the entire Hanen course and any other advice I've been given is complete common sense to me. I was shocked at the simplicity of their "methods" and further shocked by how narrow minded the approach is...no tailoring for any child who may learn in a different way. Nothing (nothing!!) happened until I threw it all out the window and started challenging her directly with sounding out words and showing her the letters that make each word.

    After she went from 6 words to 50 using my "method" all the SLP would say is that it's the wrong way to do it and it's unnatural. ARGGGG! I finally called her and told her what did and didn't work for Katie. I asked her flat out why we would go back to a method that didn't do anything for Katie when I've found something that works. She just kept repeating that her method works. I have lost all faith in our SLP and I'm not sure how I'm going to be positive or receptive in our next session. On top of her ineffectiveness, she also (after seeing Katie for a total of 1.5 hours, she's new) decided to enlighten me with all of her ideas about new diagnoses for Katie. I've been stewing about this for 2 weeks now, can you tell? :)

    FYI...I have kept in touch with 4-5 other parents from the course and they all echoed the same frustrations. Too simple, not engaging enough and NO success with Hanen.

    If you have ANY luck with a new SLP please let us know. I'm planning to start hiring private therapists until I find one that will tailor a program for Katie and go with what IS working.

    I hope you're able to find a good fit for Oia!! Here are some things that made a big difference for Katie...

    Leap Frog DVDs, specifically "Letter Factory". Once Katie learned the alphabet she became more interested in saying the letters...then came words. We did it everyday for weeks.

    Preschool Prep also has a good DVD..."Meet the Letters". It is a very slow and simple start to learning ABC's.

    Hmmm, maybe I'll do a post on these DVD's on my blog. Perhaps it'll work for some other kids too. :)

  3. Oh Mo, I am so sorry that you have had that experience! It totally sucks! I had a situation, early on, in Baby Net/Early Intervention, where our assigned girl did not come to our house when she was assigned to us for over 4 months. She wouldn't talk to me when she did come over and she just didn't mesh with Faith. I racked my brain about what to do, eventually I bit the bullet and we canned her. I sure hope that you don't wait long!

  4. Never had any success with speech. I really think it might be an under-developed therapy realm. We work almost exclusively with augmentative communication at this point because before now, we couldnt' even get Charlie to activate his voice with consistency. It is very frustrating.

  5. I totally get your frustration. Over the years, we've had no luck with SLT what so ever. My son just turned 5 and still has never spoke one word. Hope you are able to find success in this frustrating department.

  6. Crap. I am sending positive thoughts because I've got nothing else, not having got to your stage yet. Hoping I won't have to, but wondering.

  7. I am SO with you on this subject. Speech is the most frustrating thing for us! Chloe also babbles in her own language and knows EXACTLY what she's saying. I know she has adorable and amazing things to tell me and I wish wish wish I could understand her!!! It's so frustrating. I question ST techniques, but I've "shopped around" for the best ST and I'm really pleased with the one we have right now.

    Good luck! And just know you're not alone!

  8. I'm so sorry you had such a crummy experience with speech therapy. I can tell you from personal experience that speech therapy, when done right, can be amazing. I have seen what looks like an hour a week of a play date turn into a child speaking at age level. Keep doing what you are doing and advocating for Oia. She will speak, I know it too.

  9. Therapists are such a part of our lives that we have to find a good fit. We have to trust them and like their style, one that works for our child. Telling therapists that they are not the right fit is so hard...it is like handling a break up!
    Oia using her words to communicate will be wonderful!

  10. First of all, I recently found your blog and love it.

    I agree...finding the right speech therapist can be tough. Between ST in school and through our private insurance, my daughter gets 2 1/2 hours a week of ST. Is it working? I don't know. Her language has exploded, but I am not convinced that it is due to ST. I am scared to stop though, and won't, "just in case". Sigh....it's tough.