No One Can Understand You (Part 2) ~ Guest Blogging Day

Image Courtesy of Pansa/freedigitalphotos.net

When he has brought out all his own, 

he goes on ahead of them, 

and his sheep follow him 

because they know his voice. 

John 10:4 NIV

Have you ever had the embarrassing experience of carrying on a telephone conversation with someone who you THOUGHT was someone else?

Perhaps it doesn't happen quite as much now with caller ID and the use of cellular phones, but there were many times that people would call our house when I was a teenager and mistake me for my sister or mother.

Our voices can get distorted, and there can be noise on the "line" which makes it difficult to tell one voice from another. 

Similarly, my daughter struggles with her speech, and has always had a speech delay. She was diagnosed with speech apraxia at five years old and developed a stutter as recently as 2012. When she was five and received her apraxia diagnosis, the test results showed that she was only understood by a naive listener 12% of the time. Can you imagine that? A five year old who goes through her day being MOSTLY misunderstood?

I still find that I will "translate" her statements to people if they don't know her well because even with years of speech therapy, her communication is something one has to grow accustomed to.

Where am I going with this? 

Continue reading on Comfort in the Midst of Chaos... 

WAGR Wednesday~Mirror, Mirror: Is it Vanity or Speech Therapy?

Since Evie was a toddler, mirrors have been our saving grace. 

 

Whenever I wanted to go shopping, I could just find a mirror for Evie to dance in front of, and I could take my time looking through clothes racks.  If we were at a grocery store, Evie would find her reflection in the tiny mirrored strips that lined some of the shelves; or the mirrored back drop in the produce sections.  I remember one holiday season walking through the mall and Evie would stop at each glass storefront and say, “Hi, how are you?” and wave to her reflection in the glass.

I love the doctor’s waiting rooms that have mirrors for the kids to play in.  Some of them are the convex or concave mirrors which give a fun-house effect.  Evie doesn’t care what kind of mirror it is, as long as she can chicken-dance and sing and talk to herself, she is a happy girl.

In the mirror, mirror on the wall, our children are the fairest of them all.

There’s definitely a consistent theme of our kids with WAGR loving mirrors and seeing themselves in mirrors.  Since that is the case, I say, why not use it to our advantage?

There’s a popular speech therapy method of using mirrors to provide visual feedback to patients as they rehearse the muscle sequencing required to produce the sounds necessary in speech.  If you type in “speech therapy mirrors,” to a search engine, you will find a wide variety of mirrors that are for sale which can assist in providing patients such feedback.  Personally, I’d start with a regular mirror.  Why pay a therapeutic price for something that may or may not work?  

 
I was particularly interested in an app that I found called VAST Autism 1- Core which is $4.99 in the Apple App Store.  I hadn't heard of it until searching specifically for "research speech therapy mirrors". Here is the article I found about VAST Autism 1-Core. 

I have Evie's IEP meeting tomorrow, so I think I'll bring this up at the meeting and see if there is any feedback from her speech therapist concerning this app in particular.  The company that created the VAST Autism 1-Core app also markets a few other speech therapy apps, and in other languages like Spanish and Portuguese. 

I'm quite fascinated with this idea right now.  You can also learn more about the company and their products by visiting speakinmotion.com. 

Another website which I encountered when researching for this particular post was proactivespeechtherapy.com .  There's a large volume of information on speech therapy methods and apps, but there's also information on a variety of other worthy apps.  I happened to see that they recommend one that I just recently put on Evie's iPad called Toca Doctor.  She loves zapping all the germs!!!  (What does this have to do with speech or mirrors?  Nothing, but it's just a fun connection. *insert smiley emojicon*).

So, I'm really glad to have Evie's IEP coming up tomorrow.  I can get some pretty instant feedback on these things I just discovered.  I'll be sure to add an "update" to this post when I have more to add about if and how this app or any other speech app helps with Evie's apraxia or stuttering.

In the meantime, encourage that "mirror-play"!  It seems to be an obsession that could be beneficial in the long run!

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!