If my Suzannah could speak, this is what she would say…

Children and adult engage in an art activity with a bottle of glue on the table.

As a parent, you want to teach your kids to grow up to be strong, smart, independent adults. You want them to have a voice in life. To make good choices. To be self sufficient and successful. Without their voice, how do they do that? Their ability to speak gives them the ability to show their personality, their intelligence, their wit, their humor. Even if they use sign language to speak, they still have personality, intelligence, wit and humor. Even if they use adaptive equipment to speak, or a computer, they still have intelligence, personality, wit and humor. No matter the method of communication, their “voice” can be heard.

My daughter’s voice is her eyes. She has to choose between 2 choices by looking at it. Whether it be choosing the correct choice to a question or choosing what she would prefer, she has to look. Believe me, we try to trick her by switching sides. She knows and will look at her choice consistently! So what does this mean?

Everyday, my little 13 year old girl wakes up in bed and has her teeth brushed, her hair combed and put up. She is catheterized and her diaper changed then dressed. She has meds and water boluses and a 30 minutes breathing treatment. Someone may be talking to her a bit here and there during all of this but did she get to say anything?

She has therapy and range of motion and gets rolled into another position. Someone wipes the drool from her mouth again, which she appreciates, I am sure. She sometimes hears music playing, but has she said a word yet today? The day goes on and she lays in bed staring at the ceiling, breathing treatments, suppositories, “cathing,” meds, temperatures, eye ointment, the list goes on. Does she have a choice? Did she speak?

Do you get my point?

As a parent, we want what’s best for our kids. Simple. As a special needs parents, we want what’s best but we also want the basics. (Don’t get me started on accessible public restrooms). Our kids have voices too. Let them speak. Listen to them. My Suzannah has a voice. Your child has a voice. Give them a choice!

I wrote this last night because we have had some issues with nursing and I really feel that if My Suzannah could verbalize her feelings, this is what she would say:

SHE SPEAKS

I know I tend to drool
And slobber all over myself.
I don’t want to do it, it’s embarrassing.
I keep trying to call for help.

But I can’t speak out loud.
My words have no voice.
I scream inside my head at you
But you never give me a choice.

My neck is really sore.
It itches and it smells.
I don’t like it when you pull on it.
Sometimes you don’t move me well.

But I can’t speak out loud.
My words have no voice.
I scream inside my head at you
But you never give me a choice.
My tummy is upset.
I think I just need to move.
Could you just come here and help me?
I need choices I can choose!

But I can’t speak out loud.
My words have no voice.
I scream inside my head at you
But you never give me a choice.
I have to go potty now.
I peed a little on the bed.
My belly hurts and it hurts down there.
Did you wipe me like Mommy said?

But I can’t speak out loud.
My words have no voice.
I scream inside my head at you
But you never give me a choice.

I don’t know why you don’t talk to me.
What did I ever do to you?
Why can’t I get out of bed
And play like other kids do?

But I can’t speak out loud.
My words have no voice.
I scream inside my head at you
But you never give me a choice.

-Tamara Hollingsworth
Suzannah’s Mom

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If my Suzannah could speak, this is what she would say…

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