Archives for posts with tag: voice

IMG-5708Grace was discharged from speech therapy today for reasons that I don’t think are fair. It was disheartening, to say the least. We handled our disappointment I think pretty well and left on positive terms – but I cried. I wanted to just sit down and cry when we left and told Kevin – “I wish there were special needs crying days”. What I meant was a day where no one needed anything from me and I was just able to be sad, process what I was feeling, etc. But I know – and have known for a long time now – that there’s just no such luxury. Reality is I cried myself to work, dried my tears, and went to work. I led some meetings, sat on a conference call, and responded to emails. My coworkers were incredibly kind, or else I hid the crying really well, in the end, no one said anything.

Now I’m home and there are expectations to meet here. Laundry. Supper. Snuggling. Sight words. Cathing. Meds. Laundry. Baths. Bedtime stories. Dishes. Picking woodchips out of Graham’s coat (long story). But I’m taking a break from that to write this. I need to somehow express that I’m sad. That I feel inadequate to advocate for Grace in a world where the rules are veiled in shades of gray. That in my heart of hearts I don’t actually know what to expect from Grace in the area of communication and that I recognize that makes it harder to advocate for her. That having a nonverbal child is challenging on so many levels.   To describe those levels in words doesn’t seem possible.   I can only tell you that Grace’s silence often makes my heart ache – however a smile from Grace, and a long look straight in my eye can make me feel wonderful.

There is value in being able to communicate. There is value in taking the time to figure out how those around you communicate. There is value in listening with not only your ears, but with your mind, heart, and eyes.  Grace’s inability to communicate the “regular” way takes nothing away from the value of what she has to say.   We regularly communicate about Grace with those who speak for her and even have tried to describe in words what we think her communication style is. We do this because it’s important that her voice be consistent. Here’s what we say in Grace’s resume: “If you are serving as my voice my parents think my voice is largely optimistic, shows a sense of humor, is a little stubborn, is reassuring, and gets to the point. They don’t want my voice to be negative, put anyone down, or be disrespectful.”

Grace being nonverbal has been a constant struggle and will continue to be. I wish there were answers. But true to form Grace is Grace. She’s ours and we love her. We love her on crying days and good days. Her presence in our family is no less because of her inability to talk. We will continue in our own way to figure out how to make sure she’s heard.

Joy

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IMG_8101At 7:39 am last Wednesday I received a text message from Rachel, Grace’s speech therapist that said, “The device has arrived!!!:)”

I replied like this….”Waaaaa!!!! That’s so exciting”

Grace now has a communication device that she can use with her eyes. Just with her eyes! This means that on a good day or bad day she will be able to use it. We aren’t depending on the movement of her shoulder, arm, or hand for her to touch a screen to activate it because all of that can take a while for her brain to process and coordinate.

From the main screen she can choose buttons like I want, I need, I feel, I like, I want to go, or I don’t. When she picks one of those options it takes her to an additional screen that gives her more choices. There’s so much power in those choices. Think about it. Grace will be able to control what’s going on around her and what’s happening to her. She’ll be in charge.

There’s also a screen with comments like “hello” and “have a nice day”. Another page is all about her. She can activate the device to say; “My name is Grace. I like to dance.” Not only can she take charge, she can relate to people in small ways.

So much of her life is decided for her and she goes along with it really well for the most part. The first couple months we will do out best to honor pretty much anything she says and we’ll be very excited to do so. This will help her understand the power of communicating. Her eyes will need practice – it’s actually incredibly straining to stare at one point without wavering for less than a second to make a choice.

As she gets more comfortable with the device there will be times she won’t always get her way. During one of the device trials Grace had said in art class that she was done. And that was honored. One night she and I were practicing here at home and she kept going to the “gotta go” button. She did not want to work on her communication. After the fourth time she got there on her own (which was pretty impressive) I did let her off the hook for the night.

It will be strange for Kevin and I too. We will have the opportunity to let Grace decide more for herself – we make a lot of decisions for her. We also have to find time for her to communicate with the device. She has to be sitting just so in order for the device to read her eyes. It has to boot up. If we can’t find the word we are looking for we will have to add it. It’s not often she’s in her wheelchair at home. She’s mostly on the floor playing which is where she prefers to be. The device is also another thing. Another bag to load on her wheelchair, plus there’s a table mount, and a wheelchair mount. Kevin is an excellent packer, which is incredibly lucky for us because Grace doesn’t travel lightly, anywhere.

All of that to say we are going to have to be purposeful about engaging her with the device. We are going to have to find a way to work it into our lives.

We will.

We will because I want to see what she comes up with. I want to see how she and Graham will use the device together. I want to hear her call me mom. I want her to be able to say “I love you.” I want to program a few jokes in there she can tell. I want to know her better. I want her to have the opportunity to know other people better. I want her to take charge where she can – she deserves that.

I know the old ways of communication won’t go away. A communication device can never take away the meaning of the eyebrow lifted, the hand reaching out for mine, the rub of the face in frustration, or the eye contact that can say so much.

But adding what she can say on a device, to what she can say without it – is such an opportunity for our girl and for us. It really is pretty exciting.

Joy