Archives for the month of: May, 2016

IMG_8075As the school year winds down families are invited to come to the school and walk the halls packed with artwork. I love walking through to see all the creativity. It’s the first time we really see what Grace has been up to in art because they package all her artwork up in a portfolio that she brings home at the end of the year.

As Grace has gotten older Art has become one of those subjects that I find myself getting touchy about – but I’m not really sure what to do about it or whether or not I’m overreacting.

As I walked the halls this year Grace’s artwork really blended in with the work of her classmates. I don’t think that anyone would look at her artwork and know that she is profoundly impacted by epilepsy and functions at much lower level than her peers.

Grace really loves artsy things. She likes to paint, will color on an iPad or my phone, holds onto a marker pretty well and moves it around. She loves texture and paper. She’s even able to cut a little bit with the help of special scissors and someone holding the paper for her.  One of her favorite places to walk around is Hobby Lobby.

I’ve seen the evidence that she’s in Art. There’s been paint on her clothes and her helmet.   There has been clay in her hair on occasion. I love when there is evidence that she’s been creative, I do not mind in the slightest cleaning it up.

What I do mind is not seeing her in her art.

But here’s the thing. This year third graders made portraits of themselves and dogs out of clay. Grace is not capable of either. These are lessons that the art teacher is teaching and they are out of Grace’s grasp. The art teacher can’t personalize each lesson to Grace, it the responsibility of Grace’s aide to do that to the best of her ability.  Art is also considered an ‘inclusion’ time for Grace because she is with her general ed class when they go to art. I’m sure she’s being given the opportunity to make choices as projects unfold. But ultimately does that really make the work hers?

Would I be happy walking the halls seeing her smooshed clay in the midst of everyone else’s dogs? Or a bunch of colored paper glued on a larger paper in the middle of everyone else’s portraits? I’d like to think so, but honestly I think that too would make me sad.

I’m not sure that this is something that can be resolved. It may be that this is part of the grief of special needs parenting.





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.