The Gift of Speech

I’ve often heard, “You spend your child’s first year teaching them to walk and talk, and the rest of their lives telling them to shut up and sit down.” – and yes, I thought to myself that is SO true! Until…I had a child who at almost 2 years old still cannot walk or talk.  Having a child with special needs causes you to completely re-evaluate everything and learn to appreciate all that is so magical about life.  Your child won’t stop gabbing about their favorite toy? Keeps demanding their favorite movie? Won’t stop climbing the furniture? Keeps you in shape by making you chase after him? I ENVY YOU! I WISH my child would say ANYTHING at all that is coherent.  I WISH my child could run and explore his little world.  I try not to dwell, but I do have days where I hold Braxton while he is sleeping and just cry thinking about all the things he should be doing but isn’t.  Or cry thinking of how far he has come.  Of all the things I wish he could do, I wish he could speak.  This poem beautifully captures that sentiment:

Sometimes when he's sleeping....

Sometimes when he’s sleeping….

 

Wishes in the Dark (for Abby) ~ copyright 1999 by Lisa Esmond
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Sometimes when she’s sleeping
I can see in my mind’s eye
the little girl I thought I had,
the one who said good-bye.

Sometimes when she’s sleeping
hands folded by her cheek
I close my eyes and see before me
a child who can speak.

Sometimes when she’s sleeping
she seems so whole and well
I can’t believe she won’t awaken
with dreams of which to tell.

Sometimes when she’s sleeping
and the tears in my eyes overflow,
I steal what kisses I can in the dark
and wonder what joys she will know.

Sometimes when she’s sleeping
and my eyes ache with tears unshed,
I pray she’ll always be full of peace
as she slumbers in her bed.

Sometimes when she’s sleeping
I can almost hear her say
“I love you, Mom, with my heart
and my soul, each and every day”.

But always when she’s sleeping
I am full of pride
at the miracle that is my daughter
and the perfection that is inside.

What I would give to have Braxton look up at me and call me “Mama” or walk up to me just to say “I love you.” I don’t know if that will ever happen.  I believe in my heart and hope with every fiber of my being that he will, but at this point I just don’t know.  He is babbling and making lots of sounds, but despite all my efforts, none of those wonderful sounds will form in to the magical words I’m longing to hear.  I know he loves me, without a doubt.  But there is really something special about hearing those three little words.  What happens when your child doesn’t have the words to say what you want to hear? You have to learn to read their signals instead.  The eyes can truly say so much.  There are times I play with Braxton, or catch his attention and he makes eye contact with me and his little eyes light up and a smile flashes across his face and my heart melts.  There it is.  That’s my “I love you” and it is ever so special to me even though he can’t yet say the words. I can feel it.  I feel it deep within my heart.  One day, he WILL say those special words, and that day I may not be able to hold back the tears or ever forget that moment.  That is one moment I will hold on to for all eternity.

Until that moment comes, we cherish every day and learn to communicate by taking our cues from Braxton.  We are open to the possibility of Braxton needing an assistive technology device to speak to us.  We are also taking sign language classes so we’ll have a definite method of communication should Braxton not learn to speak, or should his communication device not work if we take that route.  Communication is fundamental and it’s important to us to be able to communicate with Braxton by any means necessary so I’m very excited to be taking sign language classes and hope with all my heart Braxton learns to speak or sign very soon.

13 Comments

Filed under Family, Kids and Family, Life, Special Needs Child

13 responses to “The Gift of Speech

  1. Rachel

    Look into PECS!

  2. anne

    i also believe it will happen with your son! my daughter – now nearly 11 – severe apraxia of speech among other things – IS actually speaking 2 or 3 intelligble word SENTENCES!!. she has worked soooo hard with her speech therapist and is currently learning to use a dyanavox maestro – she is also a wiz on the ipad with proloquo – finally finally her incredibly hard work (she never ever gets frustrated – she is rarely without her beautiful smile) is starting to slowly slowly but surely pay off. a few or her phrases: i lub you mom, i eat, i tied (tired) can i peese, kids! eat! (calling the other kids to the table!) she is amazing. wait and see my dear… your child will continue to amaze and astound! xoxo anne in ny

    • That’s so incredible! What a wonderful feeling to see that in your daughter! Thank you for sharing your experience. Can’t wait to see what happens next for my son. I’m sure one day I’ll be at my wit’s end because he won’t stop talking, and I will love every minute of it 🙂

  3. What a wonderful poem and post. I can relate so much to this.

  4. Beautiful post. Our daughter is unable to vocalize because of her trach and tracheal scarring. She signs, but I can see the frustration sometimes that she can’t tell us what she wants because she doesn’t have the voice or the right sign. So heartbreaking.

    • It’s great that she is signing! I can understand that frustration though 😦 I had Laryngitis pretty bad a month ago and could NOT speak one word for 2 days and then no more than a whisper for the next week. It was beyond frustrating, so it has given new perspective on how our kiddos must feel. I can’t imagine not speaking at all 😦 My heart breaks for them.

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  9. Megan Gomez

    My son is autistic. We were in the same boat with him speech wise. He has apraxia, among other things, but we were able to get him to communicate with a speech generating device. The first time he called me Mama with it, I cried. It was such a small thing, but it was 4 years in the making. Baby steps … and lots of patience. Will keep your family in my prayers. I went to school and graduated with Joseph. He was always super nice, and you both are very blessed to have such a special little guy like Braxton in your lives. 🙂

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