Tag Archives: non verbal

So will he ever speak?

When Braxton first got his G-tube at 2 weeks old, inevitably the first question I was asked after explaining his tube to family, friends, and strangers was, “So will he ever be able to eat by mouth?” For the longest time my response was, “I don’t know,” and we genuinely did not know. Once we started working with a Speech Therapist and making progress, that “I don’t know,” turned into “Yea, more than likely he will be able to eat like you and me, but he’s still learning.” Nearly 3 years later and you would never know there was a time he couldn’t eat. He still uses his tube for liquids, but he eats all of his meals by mouth. He still only eats purees, and we continue to work toward table food, but he IS eating.

Our journey to communication has been similarly riddled with questions and uncertainty. When we learned of his hearing loss, we quickly began learning sign language. Family and friends asked “Do we need to learn sign language, too?” I don’t know. Braxton did not pick up sign language as quickly as we had hoped and it seemed almost pointless to make our family learn, too. Instead, we encouraged them to continue speaking to Braxton just as they would any other child. That constant exposure to language was still just as critical. We hoped for verbal language, but were never sure if it would come.

When we finally received the diagnosis of Rubinstein-Taybi Syndrome  (RTS), we learned from other families that many of the children are non-verbal and use sign language or a communication device to speak. There are many who have at least some words and a few who are very verbal. Where would Braxton fall on that spectrum? I don’t know.

By that time, we had already started on the path to high tech Augmentative and Alternative Communication (AAC), and the diagnosis confirmed this was the path we needed to pursue, always holding on to the hope of verbal speech. We saw little progress at first, but we saw enough to keep hope alive and to continue this path. The dream has always been (and will always be) verbal speech, but the goal is communication. Communication using whatever means necessary.

As we have worked on using Speak for Yourself, a communication app on the iPad, quite heavily in the past year, the inevitable question has become “So, will he ever speak?” I don’t know.

I don’t know if he will ever speak.

I don’t know if we will ever hear his precious little voice.

I don’t know if I will ever have the chance to tell him to stop talking. (I don’t know that I would ever want to say that after waiting so long to hear him).

I don’t know what the future holds. We simply hope for the best.

 

Here’s what I DO know…

I know that by pursuing AAC we are giving him a way to communicate with us NOW.

I know that AAC is giving him his best chance to succeed.

I know exactly when he wants hugs and kisses, because now he can tell me with his talker.

 

I know exactly which toy he wants to play with.

 

I know that he likes to read.

I know that he likes to be outside.

How do I know? Because he can ask for it himself using his communication app.

 

To see this explosion of communicative skills grow right before my very eyes is nothing short of a miracle. Today, he was roaming around the living room with a slight whine and I tried so hard to find out what was wrong. He had just eaten not long ago, he had a fresh diaper, and he was playing with his toys. I looked around to see if a toy was broken or not working as intended, but nothing. I sat down and rhetorically asked what was wrong. Braxton saw his talker and walked right over to it, turned it on and hit “sleep” repeatedly. Then he climbed on to the couch where I sat watching him, laid himself down in my lap, pulled my arm around him and closed his little eyes.

Braxton Asking to Go to Sleep

 

The dream is verbal speech, but the goal is communication. Braxton just purposefully and successfully communicated to me that he was ready to go to sleep. Because of AAC, we can check that goal off our list.

Braxton now has a way to communicate and interact with the world around him. He can tell me what he wants, he can tell me what he likes, he can tell me that he loves me, he can tell me anything he wants, because we have provided a means to do so. Speak for Yourself has given Braxton a voice. A voice he is learning to use quite well!

So, will he ever speak? I don’t know. I haven’t given up on verbal speech. I would still LOVE to hear his voice, but I LOVE that I now have a way to know what’s going on inside his beautiful mind even more. One day, maybe he will verbally talk to us, but for now, he’s communicating and I couldn’t ask for anything more than that.

 

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Filed under AAC, Kids and Family, Special Needs Child

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.

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