Thursday, March 19, 2015

The Beautiful Thing Is, She Talks

I was sitting at the dinner table last night, listening to Kennedy talk. Yes, we sit at the dinner table. I have always been a firm believer of this concept, which I have my own parents to thank. From birth, my girls have sat at the table for dinner with us, eating what we eat once they were old enough, and spending time as a whole family. Sometimes a lot is said and sometimes it is pretty quiet. But I digress.

I was sitting at the dinner table, listening to Kennedy talk. Most of you probably think Kennedy is on the shy side. And outside of our home, outside of our family, she is (although she's come a LONG way). But when Kennedy is comfortable and in a talking mood, those close to her will tell you that it is hard to get her to be quiet. And she's like her Dad - telling long stories with details that just don't matter. There are times we all (sadly) tune her out till she gets to her point. And honestly, I don't even remember what she was talking about last night. I wasn't listening to her story, but I was listening to the words.

Kennedy has multiple whammies against her when it comes to speech. She has facial paralysis. She has palate paralysis. She may have some other paralysis of sorts within her mouth and throat that we aren't sure about and she wouldn't know the difference to tell us. She has floppy vocal cords. She has constant sinus drainage. She could not hear well for her first three years of life when speech was ramping up. She hears herself differently than you and I hear ourselves because of her severe hearing loss and use of BAHA (which as a side note, if you talk close to you will hear your own voice echo within her head...pretty freaky phenomenon).

But the beautiful thing is, she talks. And most people can understand her, although that always hasn't been the case. And she has come so far.

For the first few years of life, only those around her on a daily basis could understand what she was saying. We had to do a lot of interpreting for others. Then we started a preschool speech therapy program offered by our local school system. There we met Ms. Ortosky (who is a Team Kennedy follower!), who will ever hold a very special place in my heart and although she doesn't wear a white coat like our other angels, she is considered one of our angels nevertheless. Ms. Ortosky worked with Kennedy for two years and made strides with her speech that we never thought would be possible. The day she conquered the "s" sound, I cried like a baby in the hallway (where I sat during sessions) while Ms. Ortosky celebrated with Kennedy in their room.

We unfortunately graduated from preschool speech and entered the world of elementary speech therapy. Private speech therapy agencies had atmospheres that were too much like a doctor's office and were not a good fit for Kennedy so we were limited to what was offered in the schools. In her six elementary years, Kennedy went through three speech therapists. The last one made some other big strides like the "sh" sound and the "r" sound in certain letter combinations. And then in fifth grade it was decided that the social non-acceptance of speech therapy from peers (more on this soon) was far more detrimental than any further success that the therapy could provide Kennedy, so we exited from speech services.

Almost thirteen years later, speech doesn't come easy for Kennedy. She still struggles with the paralysis issue and she doesn't sound like others when she talks. She gets lazy with certain sounds if she doesn't pay attention. When she is sick or really tired, she slurs a lot of her speech and even I have a hard time understanding her. She still has issues with some of the sounds -- "r" is a super-tricky one for her when it falls in certain places within a word. The "str" takes a lot of thinking on her part...the "t" often gets left out of such words. You and I speak and never think about it...it is second nature for Kennedy to think about how she speaks.

What I'm most proud of is that she doesn't let this bother her. I know she gets made fun of at times because of the way she says certain words or how she sounds in general when she talks. I know she gets irritated at me when I point something out and remind her how it should be said (this is done sparingly and in a loving way folks, only as a gentle reminder). I know she gets too tired and feels too crappy at times to even try. But she keeps talking. To everyone. And if she needs to, she repeats something. As many times as someone needs her to (she may spell it out if she gets irritated enough).

You know I'm all about acceptance for those who look different. Know that I'm also all about acceptance for those who sound different. Kennedy will forever work on her speech but she will never sound like most people when she talks. Too many whammies out of her control. Let's try to teach our kids that speech isn't a given for everyone. And not everyone who can talk, sounds like you or I. And it is okay for kids to attend speech therapy in school and this is not a reason to make fun of someone.

But the beautiful thing is, she talks.

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