ELLIE'S BLOG on Living Well with Disability

The Holiday Season is a time for meeting with new and old friends in your home or at outside events.  Whether it's a family, community or other special holiday event chatting and talking is what we mostly do at these events. This year you may meet someone new or someone that you might not have seen for awhile that has changed since you last met them. And as my blog is about disability of course I'm talking about someone with a specific disability.

In this blog I want to talk about people with a speech disability.  Actually to be more correct : a speech disorder or a language disorder.  A speech disorder is when a person has difficulty pronouncing sounds or articulating. Stuttering is an example of a speech disorder like in the movie "The King's Speech".

Recently there was an article and video in the news by a courageous young man who has a stuttering problem. When Philip was told by his teacher that he was not to talk in class as she felt that his speaking was disruptive he didn't do what most people with a stuttering problem would have done, kept quiet. He fought back.

For more information see the article  from the NY Times .   <http://www.nytimes.com/2011/10/11/education/11stutter.html?hp        

And when you do be sure to click on his YouTubechannel .

The other speech disorder category is  Articulating Disorders. This  can be a simple childhood difficulty in saying certain vowels or consonants. But in adults it is most likely a motor speech disorder (Apraxia) . Here the persons brain and their oral muscles required to make sounds are not in synch. This can be due to a stroke,traumatic brain injury,dementia,tumors and progressive neurological disorders like Multiple Sclerosis.

The language Disorder category can be divided into a receptive or expressive disorder.

A receptive language disorder is when a person has trouble understanding others . This is caused by a severe injury to the brain by trauma or disease.

An expressive language disorder in a person means that for them sharing thoughts, ideas and feelings in a fluent manner is difficult. This can be due to a medical problem like a brain trauma or stroke resulting in a fissure. Or the cause can be unknown. It can mildly affect them or be more severely limiting.

A recent example is that of  Rep.Gabrielle Gifford who was shot on Jan 8, 2011.  As a result of the gunshot to her head her speech as well as her motor ability was affected. Below is a video from the Huffington Post with Rep.Gifford speaking. Remember she has come a long long way with hours of therapy. And she is very lucky to be alive.

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As a physical therapist I have worked with many patients or clients who had speech problems for many decades of my life.  People with strokes, multiple sclerosis, ALS, Parkinson's,traumatic head injuries and young children with developmental disabilities. Many of them had speech disorders and or language disorders. I wish I could tell you that I found it very easy and did a wonderful job in understanding and working with them.

The truth was I had a lot of difficulty at first and had to learn to listen carefully and not be afraid to say would you repeat that? I want to understand you.  It's my fault not yours. And over time I did much better.

I remember going to a lecture where a lawyer who had cerebral palsy also had a speech disorder. Her lecture was about the disabled and the legal system.  At first I couldn't understand her and felt angry, frustrated and annoyed. But I wanted to hear what she had to say .  So I basically zeroed in (Zen like) and listened very carefully. And 10 minutes into her lecture I heard everything she said and understood it all. In someway it's similar to listening to a person with an unfamiliar accent.

When the lecture was over I went to lunch with the other people at the lecture. We discussed her speech disorder and many of the members there also had the same problem I did.  Some of the people were not able to understand her as well as I did.  Others didn't have a problem at all. Those that had no problem  were the people who worked with the developmentally disabled and had accustomed  themself to listening and understanding people with this particular speech pattern.

But they all felt the lecture was well worth it. And everyone had the greatest admiration for her. In fact this was 50 years ago and is still very much in my mind.  I guess she made a lasting positive impression on me.

I also have a son with a mild neurological problem that affected his motor skills and his speech. The motor skill's are hardly visible now that he's become an adult. But except for bike riding he's not into sports. But speech can still be a problem.  His problem is in expressive language. He's very bright took advanced placement courses in high school and graduated from a top college. But he can not fluidly express his views or opinions easily unless he prepares ahead of time. The place where it's most frustrating to him is when he's at social events which he does go to. And it's because you  converse many times in groups where you are expected to speak fast back and forth. If you have to organize your thoughts before you speak so your speech is fluent people have moved on.

Ironically with my multiple sclerosis I can also have a speech problem called dysarthria. Because of weakness in the oral muscles the co-ordination with thoughts being expressed in speech become slower and can actually start to slur. But my biggest problem is word finding which to me is really disruptive in a social situation. It's beyond the "senior moment" category.  One of the things I found that large noisy groups tired me and made my speech and word finding worse. Discussing this with a Neuropsychologist affirmed my decision to look for small groups and rest always before I go out and need to converse.

I do understand my son so much more now that I have a problem myself and have greater respect and admiration for how well he's done with his life.

Being able to handle your own speech problem is critical to a full life. Just as the person with stuttering did most people with speech problems have years of speech therapy. Which is very helpful for them like with Rep. Gifford. But it is not always a cure. Therefore learning how to handle your speech idiosyncrasies is critical. It is important for both the person with a speech problem and the person your talking to. To communicate you must work together to improve interactions. Here are some tips for both speaker and listener.

    Tips for the Person With A speech problem

 Introduce your topic with a single word or short phrase before beginning to speak in more complete sentences
    Check with the listeners to make sure that they understand you
    Speak slowly and loudly; pause frequently
    Try to limit conversations when you feel tired, when your speech will be harder to understand
    If you become frustrated, try to use other methods, such as pointing or gesturing, to get your message across, or take a rest and try again later

Children may need additional help to remember to use these strategies.

Tips for the Listener

    Reduce distractions and background noise
    Pay attention to the speaker
    Watch the person as he or she talks
    Let the speaker know when you have difficulty understanding him or her
    Repeat only the part of the message that you understood so that the speaker does not have to repeat the entire message
    If you still don't understand the message, ask yes/no questions or have the speaker write his or her message to you.

  I also asked my son to write a little about his own experiences with his speech  problem, here's what he had to say.

These are my main problems: when I'm trying to talk while working out what I'm going to say, I can have a tendency to insert filler words and sounds when the specific words aren't coming together right. Alternatively when I have exactly what I want to say worked out, (like when the topic is one I'm familiar with) I can start talking faster and louder than is appropriate.

The main thing I've learned in trying to improve how well I can talk, is the importance of listening well. I've had to practice condensing what I say into smaller bits of speech, which helps me avoid both cascading filler words, and creeping volume. The only advice I can think of if you're talking to someone who has a problem like mine is not to be afraid to say, "You're sounding a little incoherent, do you need a moment to compose your thoughts?" or "Could you talk a little quieter?"

When dealing with someone with a speech problem, don't be afraid to talk about the problem if it will help you understand each other. Remember, speech is only the method. The goal is communication.

Have a wonderful Holiday Season!

ellie