Coffee and a Conversation

Hey there.  I hope you have a great cup of coffee, or tea or hot cocoa handy.  Are you comfy?

I am not sure you will read another post like this one.  I am not sure if you will even read past these opening lines.  I wish you would, because I would like to chat with you for a while.

If I told you that today is National Apraxia Awareness Day, your eyes would likely glaze over and you might half listen or scan this page quickly looking for a pretty picture.  Sorry, for the one-two switcheroo but I sort of knew you might do that so I used some super fun pictures.

Rainbow flower

In all likelihood, the word apraxia has no meaning to you so this is not your typical awareness sort of post.  I could tell you that:

understaqnding apraxia

Now see, you either devoured that information or you skipped right over it.  I have found that people take in information when they are ready for it.  Not a minute sooner and that’s perfectly OK.

My husband, on a regular basis throughout our marriage has pointed out that my reality is different from other peoples.  I have, for the last 18 years embraced disability.  I sought it out as a therapist in order to help.

I would come home frustrated by insensitivity, by ignorance, by lack of compassion. I would need chocolate. Or wine.  Or both.

“Kim,” he would say, “joe-average person doesn’t know that and probably will never have to think about it.”

Well, one day, not too long ago, my hubby moved from “not knowing” to “you better think about it.”

Three and a half years ago, I sat, blissfully unaware that my life was changing before my eyes.  I was at a conference, learning about the development of speech.  It was black and white in front of my eyes.  It made me wonder.  Still, I waited.

Three months passed and my excuses had run out.  I made the hardest phone call of my life to early intervention and told them I thought my youngest son had a problem.

“Oh Kim.  He is the baby.  His siblings are just talking for him.”

“Oh Kim. He is a boy.  Boys always talk later than girls.”

“Oh Kim.  You are probably just seeing things.  You are trained to see things.  I am sure it will be fine.”

“I bet one day he just talks in sentences.”

Well meaning words meant to allay my fears kept me from making that call much sooner.  I wanted to so much believe them.  I wanted so much for them to be true… until my heart couldn’t take it any more. The one day… the later… never seemed to happen. And life was ticking by.

I did see small things.  I made them into big things and still… it did not happen.  My son was diagnosed with childhood apraxia of speech at age 2 and a half.

Now why, you ask, does this have anything to do with you?

The answer is actually simple.  You probably know a friend or family member or community member with a child with a disability. You may even bump into a person in the store with a disability.  Is it apraxia? I don’t know.  But you know what?  It doesn’t really matter.

What you do need to know is this…

A person’s lack of words does not mean a lack of intelligence. Want to see what non-verbal life is like?  Don’t say anything today during lunch time.  Simple 30 minute challenge.  Can you do it?

This is what it feels like when you can't understand me.

This is what it feels like when you can’t understand me.

A person likes to be treated like a person. Wheelchair, walker, oxygen, communication device and all. Don’t you appreciate respect and common courtesy?  Same.

the face of apraxia

One face of apraxia.

Not all disabilities are obvious.  Honestly though, in order to avoid the pitfalls here, see above.  People are people.  Watch out, I may break into Depeche Mode song.  Anyone? Anyone? Oh man… aging myself again.

Every behavior has a purpose.  Whether it’s a lack of “trick or treat” or lack of a “thank you”… a screaming fit in the store or a fidget toy in church.  Please do not assume you know the cause and please do not judge the situation.  Honestly it doesn’t help and really only hurts.

Every person appreciates being asked if they need help. A simple “Do you need some help?” will suffice. They might not recognize their need for it today because they are hurting or coping or trying to establish their independence… chances are they will actually say no… but they will appreciate it deeply and sincerely one day.

Wait and see is a BAD idea.  It is seriously hard to have a conversation with a friend or family member about something we see wrong with our kids or even wrong with ourselves.  You know that  “just got cut from the thing wanted the most in this world feeling?”  Yup, like that.  Dealing with the idea that your child has a long uphill battle against something, possibly unseen, possibly not well known and likely also the people who don’t accept them is nothing short of a rip your heart out, stomp it under elephant feet and then put it back in your chest sort of feeling.  Oh, and then you have to “deal with it.”  So, if a friend or loved one confides in you, help them to find the proper help.

Your example sets a tone for your children. Tolerance. Love. Acceptance. Even as I write this post, one of my children has asked me to stop… Why?  Because he doesn’t want the world to treat his brother differently. He is afraid of the repercussions and he is only 11. This post, I told him, is not about pointing out his differences but rather about pointing out how he simply is a super awesomely awesome kid.

Please, choose your words carefully.  I am not talking about political correctness or blah, blah, blah, I am talking about raw emotion.  Words like “suffer” and “can’t” and “won’t” and “never” dig deep.  Those wounds of the heart take a long time to heal.

Fireworks Disney World

Appreciate the every day simple things in life.  An “I love you.”  A walk in the park. Beautiful flowers.  A vibrant fireworks show. An unsolicited embrace. A good, uninterrupted night’s sleep. These are not givens to everyone in this world today.  For some they are elusive.  If they are a part of your world, enjoy them, appreciate them.  Right now.

Each day, I try to see the beauty in the little things of life. Each day presents blessings waiting for you to find. So while this path may not be yours, you can certainly be more aware.  Perhaps less afraid.  Perhaps more open to the idea of people with disabilities.  Open to their hopes.  Open to their dreams.  Open to them as people.

Afterall, they are simply human beings just like you and me.

May 14th is National Apraxia Awareness Day!

His heart was full of song, though he could not sing the words.

For more information about Childhood Apraxia of Speech, please visit apraxia-kids.org

For more information on my son’s story, you can click here and here.

For some other super mom’s thoughts on National Apraxia Awareness Day… check out these links!

The Mighty

Love, Live and My Lens

SLP Mommy of Apraxia

Hands Free Mama

Scooters Voice

Apraxia and Kamiree

Thanks for reading!!!

 

27 thoughts on “Coffee and a Conversation

  1. morning Kim! Thank you for sharing this, what wonderful perspective you have on life, on daily appreciation of the gifts we all have in our lives! You are a fantastic mom and I am blessed to call you ‘cuz’!! xoxo

  2. I’ve made attempts at not speaking for an entire day numerous times. I’ve never suceeded, not once. Thank you for sharing, almost all of what you brought up were news to me. Certainly put communication in a new perspective!

  3. Pingback: Bloggerhood Etc. 5/19/14 | Fatherhood Etc.

  4. Arrived here via OM – and glad that I did. I touched on a tiny part of this once in a blog post (not Apraxia specifically, but rather all people whom cannot speak), because I became aware of it during a stint with laryngitis which required no talking for five days. Thanks for sharing this and raising awareness.

  5. Read and loved every word :o) I have two boys, now men, with autism. Early intervention was the key that unlocked the doors to our world for them. Mind you, this was over twenty + years ago and I had to FIGHT for people to see what I was seeing! I heard many of the same things you did. Right now, I have a nephew just dxd with apraxia, I hope your message gets to many, many people. Acceptance and understanding in so important. I applaud you for sharing, the world does need to know :o)

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