Monday, May 12, 2014

I have something to say

Several weeks ago as we were leaving Grandma & Granddad's house Granddad gave Brett a kiss on the forehead and said "I love you, buddy."
And Brett responded "I love you too." 
I was holding him and almost dropped him. Tears sprang to my eyes and I looked at Granddad – he had heard it too! A miracle moment.
Part of Brett's Cerebral Palsy diagnosis is that he is "non-verbal." Mostly he lacks the trunk strength and coordination to do a lot of the breathing involved with talking. Lately he is making a lot of sounds. Trying to communicate with his words, but we often can't understand him.
He has some words he uses regularly. He will answer "ya" responding to some questions. He can say "Momma" and "Daddy" – and I assure you there are few sweeter sounds. He often calls "out" or "all done" from his bed in the morning (sometimes around 4 or 5 a.m.) and he often says "I like it" with varying degrees of clarity. Sometimes we will hear a word or phrase, like "I love you too" as clear as day and then not hear it again for months or ever.
Brett can't use his voice to tell you he's hungry and when he's crying he isn't able to use his voice to tell us things like "my tummy hurts" or "my leg braces are bothering me" or "this shirt is scratchy." There are times when he desperately wants me to know something and I can't figure it out and he is frustrated to tears and I've been in tears while my heart aches to know what he wants to tell me and the world.
So we aren't ok with Brett not having a voice.
I often tell people "just because he can't speak does not mean he doesn't have anything to say." Unfortunately, people correlate his lack of language for a lack of intelligence. In Brett's case he completely comprehends what you say and what's going on around him. He knows his numbers and letters, letter sounds and sight words just like other kindergarten students. But communicating all of that is a challenge – for Brett and for those he wants to communicate with.
Since Brett was little we have introduced a variety of methods for Brett to "speak" or participate in conversation. I am grateful for my friend Jana whose background as a speech pathologist opened my eyes early to the options and assured me he wasn't too young to give them a try.
Brett has a Big Mac switch and some smaller block switches. They are essentially buttons you can use to record single messages and he can activate the switch to speak. He has used them to tell people happy birthday, say trick or treat on Halloween, to bring home messages about what he did at school and to help read a line from a book. He has a switch that allows up to three messages and is most often used for him to participate in our bedtime routine to say Amen after a prayer and then goodnight to his brothers. He uses some basic body language to communicate. A thumbs up for yes and arms/hands crossed for no.
Since Brett was three he has been working with several AAC devices. He uses a PODD book, which uses a series of Boardmaker pictures to give him choices of things to say. He also uses a communication device - a computer that allows him choices of things to say. 
Progress is slow. 
Because of his physical issues Brett doesn't yet have the accuracy to quickly touch a screen to say what he wants. So he has two switches or buttons. One at his elbow and one by his hand. He uses his elbow and a little speaker by his head to listen to the choices of what he wants to say and when he gets to the right one he presses another switch with his hand to make the device say it. Sometimes, especially when he is excited, his body gets away from him and his elbow will hit the switch going right past what he wanted to say. It can sometimes take up to five minutes for him to communicate a single thought. It can be both mentally and physically exhausting for him and a test of patience for the person he is communicating with. But he has made a lot of progress and does a great job with it when he is motivated to say something. We are waiting to hear whether insurance will approve a new more dynamic device for him to use as his old one is outdated and doesn't offer enough options for him.
Brett had another breakthrough a few weeks ago at assistive tech therapy when he used his device and a PODD to ask a question about something that was going on in the hallway. It was the first time he initiated a question and we were so excited!
I tell you all of this for several reasons: 1. To offer a better glimpse into Brett and how he communicates. 2. To encourage others to investigate the many communication options. 
May is Better Speech & Hearing month. If you know someone with a young child who is concerned about their speech or hearing please encourage them to visit identifythesigns.org – there is so much today that is treatable and so many solutions available.
It also doesn't have to be a child. These communication options can be used at any age and are being used by adults with ALS, dementia and a variety of diagnosis. 
My career is in communications and I can't imagine not having the opportunity to say what is on your mind. I look forward to the day when Brett's abilities and the technology come together to the point where he can say anything he wants to anyone who will listen.
Until then we will celebrate all the special moments. I asked each of the boys to record a Mother's Day message to Grammy who lives out of state. On Brett's turn I set him on the couch and told him when I started the video he needed to say "Happy Mother's Day" to Grammy. I was expecting him to use his Big Mack switch. Listen closely to the beginning of the video - amazing!
video



4 comments:

  1. Thank you for sharing this Jody. Sounds like the best Mother's Day gift ever! That boy is an inspriation. Joan

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  2. What a great post. Thank you so much for sharing! What a special mother's day you had!!!

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  3. I love reading these posts, Jody! I know your time is precious, and I appreciate your taking the time to share.

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  4. TEARS! GOoooooo, Brett!!!! The boys and I were JUST talking about this in the car the other day....about Brett's speech and that he has a lot to say and they have to be patient and take the time to listen. Can't wait to show this to them!!!

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