WAGR Wednesday~Speech! Speech!

Evie was signing "L" for Laurie Berkner here.

Today, I thought I would talk a little about the issues that we’ve had with Evie’s speech.  There is a broad variety of speech delays that are common with WAGR Syndrome, so what I’ll talk about here doesn’t mean that every child with WAGR will experience it, nor does it mean that I’ve covered all the types of speech delays one may encounter; it’s what we know about from having experienced it with Evie.

Evie’s had a speech therapist since she was about a year old.  Initially we were focused on teaching her sign language.  I couldn’t understand why we would do that since I thought that the “need” to speak is what would get someone TO speak; so why teach her a way to get around without “verbal” speech?   

What I had to learn, however, was that “communication” patterns form in the brain whether the speech is verbal or not; so by teaching her sign language, we were actually helping Evie develop the “firing” patterns in the brain that were required to develop spoken speech.

The chemotherapy that Evie received from age 15 to 19 months did not advance her speech; in fact it set up an even greater obstacle for Evie; neuropathy.  I didn’t realize how much the chemo actually affected her ability to “feel her face” until she had been off chemo for two months and I finally saw her show emotion on her face again.  In photos of her during chemotherapy, you will often find that she looks expression-less; I now know that was a result of the chemo.  Since she couldn’t really even control her expressions enough to smile or frown, then she certainly could not isolate the movements of her mouth enough to form words.

Evie’s speech therapist had us using auditory bombardment.  We had lists of words that began with the same letters that we were to read to her over and over again so she could hear the same sounds repeated.  We read them to her when she was eating, bathing, getting her diaper changed; anytime we could. 

Baby, bananas, bath, born, bagel, brown, black, bat.

Pancake, purple, pink, popcorn, positive, penguin, pistol, paper. 

Evie began speaking around age three; but a speech evaluation at age 5 showed us that to a naïve listener (someone who wasn’t with Evie on a daily basis), she was understood only 20% of the time.   

Can you imagine being 5 years old, at school, away from your family, and only being understood 20% of the time? 

Needless to say, her after-school hours were spent expressing very angry frustration. She couldn’t develop friendships at school with peers because they couldn’t understand her. Even adults had a hard time understanding her but they were able to reason through some of the communication issues at least. 

The condition Evie has which inhibits her speech so much is called Speech Apraxia.  She knows what words she wants to say, but she can’t’ quite get them out.  They get stuck in going from her head to her mouth.   

She would often say a word clearly one moment, but then it would sound totally different the next.   

For example, the therapist could show her a picture of a truck, and Evie would say, “Uck…”  Okay.  That was understandable.  Then a few minutes later there would be another picture of a truck, and Evie might say, “mungo.”  Hmmm…I’m not seeing the connection.  

Once we began occupational therapy (her OT diet consisted of modulated music therapy, Wilbarger Brushing technique and joint compressions) her speech actually exploded.  I don’t know if it was awaking the nerves in her face and mouth, or what, but it had a dramatic effect on Evie’s speech.  I’m not guaranteeing that OT will impact every child’s speech this way, but if you have gotten to the end of your rope, you may want to consider it.

Our latest obstacle is stuttering.  Evie began stuttering a little over a year ago.  I have a feeling that it’s a culmination of a few things:  anxiety, more complex speech patterns, and a need for more consistent OT again.  

Evie’s speech therapist, school teachers and aides are doing a wonderful job at working with us through it all; but that doesn’t make it any easier to watch her struggle with her words.  I just recently began doing joint compression exercises for her again, and am hoping that this at home therapy may help her with some anxiety and possibly will relax her when she is speaking.  I think the next step would be getting on some anxiety medication; which actually has been recommended aside from her speech, but I just haven’t been ready to take that step yet.  I have heard from other parents in our WAGR support group that anxiety medication did help decrease the stuttering when it happened to other children with WAGR.  

Speech delay; just another hiccup that might come along with W-A-G and R of WAGR. 

P.S.  Please pardon any typos I may have in here at this time...we have a tremendous amount of snow falling and a tremendous amount of appointments at the hospital~so I have to try to get there on time and safely!