Superhuman Dedication

IMG_0477 Thanks for all the inquiries about Virginia's new communication skills. I wasn't trying to be secretive. I was just putting it off because I knew it would be tough to explain. But I am going to try. I could write a novel on our experiences with therapy- speech, physical, and occupational. But for today, I am going to attempt to stick to the facts of our new communication plan. Let's see if I can stay on task!

First, a little background info. When we moved to Birmingham in December of 2004, the first thing I did was call Lynn Roebuck at UCP. She is a speech therapist who specializes in children who need augmentative communication- in other words, children who need to communicate with something other than their voice. Lynn was actually one of the reasons I wanted to move here.

Virginia and I went for our first meeting with Lynn in February of 2005. As all of you special needs parents know, I proceeded to answer a million questions about Virginia's delivery, which specialists we saw, and what her diagnosis was. Now I politely refuse to answer these questions most of the time because it doesn't really matter, but back then I painstakingly went through every detail of her apgar scores, days on a ventilator, seizure history, etc.

The main thing I wanted Lynn to know was that everyone thought Virginia was brilliant.

Lynn looked at me and said something like, "Usually motor skills and cognitive skills are related. It would be hard to have this many physical problems and not have some mental challenges as well."

And I said something like, "Tell me something I haven't heard before, fool." (Just kidding- I think I said, "Let's see what you think after you evaluate her.")

I am sure Lynn was laughing inside at this controlling mother, but I also know she immediately grasped both my devastation and my desperation.

Lynn proceeded to evaluate Virginia in the best way she could. She would make an animal noise, and then hold up two stuffed animals and ask her which animal made that noise. She did so well at that, we moved to four pictures taped to a piece of PVC pipe.

"Where's the chicken?" Lynn would ask.

Virginia would look right at the chicken.

Then Lynn got out a huge baby doll.

"Can you look at the doll's feet, Virginia?"

And Virginia would look at her feet and smile.

By the end of the hour long session, Virginia had won over the person who would become perhaps her biggest advocate, Lynn.

"She's smart," Lynn told me at the end. "In fact, I've never even had a 15-month-old typical child do so well with four picture choice making the first time around. I agree- I don't think she has any cognitive deficits."

For the next two and half years, Lynn worked with us on picture symbols, eye gaze frames, and big button talkers. (Button looking devices that you program a message in "come here, mom" or "more, please" and when Virginia would hit the button with her hand, it would say the message.)

But I am not going to lie- things were really hard. I don't think anyone, including me, has a clue about how difficult it is for Virginia to control her body. If you took away my voice, I could point or move in the direction of what I wanted. I could use my eyes. Virginia's motor skills are less than a three month old's. Even her eyes are not dependable.

Around the time Virginia turned four, Lynn quit for two years to have two babies in eighteen months. During that time, we went to Atlanta to Scottish Rite's Augmentative Communication clinic and their team decided Virginia could use a communication device called a Vanguard. It looks like a laptop and attaches to her wheelchair. Essentially there are picture symbols on a screen and Virginia operates the cursor with a metallic sticker on her forehead. If she allows the cursor to dwell on the picture for a set period of time (4 seconds), the device would say the name of the picture out loud. (For example, if she held the cursor on the picture of bubbles, it would say bubbles.)

Virginia with the Vanguard, age 3 1/2

We worked with the Vanguard for two years, but I never really felt like things got any better. Obviously, this was (and still is) a complicated situation. I am about to digress again, but I feel like this is an important piece of the narrative. For starters, Virginia is a child. Children are unpredictable and you can almost never expect one hundred percent accuracy from them. I know Wills can count to one hundred, but there are plenty of times he won't do it for me. We always want Virginia to give us a definitive answer. "Do you want to watch Bedknobs and Broomsticks or Davy Crockett?" But maybe she doesn't want to watch a movie at all. Or maybe (like her mother and generations of women before her) she can't really decide which movie she wants to watch. Until you get really good with a speech device, you are unfortunately faced with very limited choices.

Communication devices are very unnatural. They are hard to incorporate into the life of a family. Findley and I are also good at understanding what Virginia wants. We can almost always tell what she wants. Therefore, there is little motivation for us (or for her) to go to the trouble to deal with some of these devices. And as my dad always says, "There are only so many hours in the day."

Every day that Lynn was gone for those two years, I prayed she would come back. I tried not to call her too much because I felt like she deserved her time with her family, but we really missed her.

When Lynn called me in the fall of 2009 to say she was coming back, I was ecstatic. Honestly, over the time she was gone, we hadn't done very much to advance in the area of speech. We were using eye gaze to communicate at home and school. We could hold up ten words (around a frame) and ask Virginia to identify a certain word, and she always would get it right. In the same manner, we knew that she could even spell on an age appropriate level.

When Lynn came back, she really rocked the boat. "Abby, who cares if Virgina can spell 'there.' I want her to have power. I want her to have a voice. I want her to tell Wills to leave her alone. If you and the school keep quizzing her all the time, she's going to quit responding because she gets nothing out of it."

Lynn had hit the nail on the head. All of a sudden, I felt so guilty for the hours I had spent 'testing' Virginia on spelling and numbers. Didn't I care more that she could tell me how she felt or what her day had been like? Obviously we all did, but how would we get there?

Lynn spent several sessions with Virginia on the Vanguard and decided it was too frustrating for her. "Abby," she told me, "Everything else is so hard for Virginia. If communication is frustrating, too, she'll never do it. This thing is way too hard for her." Findley and I totally agreed.

Last summer, at Lynn's direction, we rented a device for a month that has an eye tracker. Instead of controlling the mouse with a sticker on your head, you control the mouse with your eyes. Well, it didn't work either. Lynn and I couldn't even get it to calibrate to our eyes effectively, much less Virginia's. I do think that if the technology gets better over the next ten years and Virginia matures a little bit, the eye tracker might word for us. But definitely not yet.

In the meantime Lynn has continued to work diligently on access. In other words, how can Virginia best control her world? About eight months ago, she finally started to have some success with a head switch. The head switch is a little button next to her head that can plug into all sorts of different things and give Virginia some power. She can click it to turn her ipod on. She can read a book on her computer and click it to turn the page. There are tons of games on her computer that help Virginia's timing with the switch. If she hits it within 4 seconds of being cued to do so, her favorite song will play or something funny will happen on the screen.

Well, she is now about eighty percent accurate with the switch. Yay.

Working on her computer

For the first time ever, Virginia can do something physically when she wants to- she can use her head switch. So Lynn attached a voice output device to her switch that says, "yes." Now Virginia can say 'yes' when she wants to. Not such a big deal because you can tell by her smile if she is saying yes, but still progress.

So then Lynn added a second switch, attached to a voice output box that says 'no.' So now Virginia can tell us 'yes' or 'no' whenever she wants. Sometimes she hits 'no' by accident because she naturally pushes to that side when she is happy or mad, but I think she will gradually get just as good with the right side as she is with the left.

The yes/no switches

(Let me just say that if you are still reading, you are either a speech therapist or deserve a medal. This is the longest post I have ever written and I am sure extremely boring.)

Now that Virginia has use of two switches, she can start to do two new things. The first is called step scanning. She can look at a series of words (or images) on the computer and use one switch to scroll through them, and the other switch to select what she wants. Step scanning is slow, but is a viable means of communication for some people.

The second door that has opened for Virginia is a system called PODD. Virginia needs a partner to communicate in this manner, but most people need someone else to talk with anyway. (Except for me, I always talk to myself. A sign of brilliance, they say, or insanity...) PODD was developed by Gayle Porter, a speech therapist in Australia for kids with multiple difficulties communicating. One of the first things she did was organize language to make any phrase accessible in as few options as possible.

We start by asking Virginia if she has something to say.

If she says 'yes', we move on to the next step.

"Is it a quick word?" her partner would ask.

If Virginia says yes, we move to the list of quick words.

We always say things in the same order, so Virginia can learn what's coming. There is also a book she can look at too, but if it's a day when she is having trouble with her eyes, it can be all auditory.

The list of quick words might be 'funny', 'hungry', 'potty', 'home', 'mom', 'movie', etc.... and as she gets better and better, we add more and more words.

If Virginia says no to 'is it a quick word?', we move on to 'is it a question?'

If she says yes, we move to the corresponding list of questions.

The system is organized in way that Virginia can pretty quickly- in as few responses as possible- get to the heart of what she wants to say. It's like that game (I can't remember what it is called) that in seven questions can guess what word you are thinking of, no matter what it is.

Lynn and I are going to Chicago in July for more training on PODD, but we are already getting started. It will take Virginia (and all of us who are her communication partners) a long time to get the hang of this system. We will all make mistakes, but for the first time ever, I feel like we are on the right track. I know that she can do her yes/no switches, and therefore I know she will eventually be able to communicate using the PODD system. There are videos of children even more severely involved than Virginia doing PODD effectively, and that gives me a lot of hope.

There are many, many times that I have been very down about all of Virginia's therapy, especially speech. Lynn and I have been through a lot together. We have chased a lot of rabbits. Sometimes it seemed like what we were working on had nothing to do with actual communicating. When I would complain to Lynn about this, she would say, "I am just filling the cup, Abby. Just filling the cup. Hopefully one day, it will all come flowing back out."

In fall of 2009 when Lynn started working with Virginia again, I had a total come apart with her one afternoon.

"Is it ever going to get better? Are we ever going to get anywhere?" I wanted to know. "We have been doing the same things for years. Years. And she still can't communicate any more directly than she could five years ago."

Lynn looked at me and made a promise I will never forget. "Abby, I will not leave you and I will not leave Virginia. I know how smart she is. I can only imagine how frustrating this is for her. But I promise you, I will figure out a way for her to communicate. I don't know how yet, but I will. I promise."

There have been times when I couldn't work on speech goals with Virginia because it was too hard for me to watch her struggle. I knew how badly she wanted it and yet her body wouldn't cooperate. There have been many times when Amy (or Meagan or Sally) had to take Virginia to see Lynn because I couldn't face the struggle and the failure anymore. But Lynn has loved Virginia and fought this battle for her for six years. She has been there through every frustrating moment with superhuman dedication.

I know that we are a long way from the goal but finally I feel like we are getting somewhere.

(Usually I reread my posts, but this one is too long, even for me!)

As a reward for those of you who read it, here is Eliza helping make cookies for Findley's birthday:



IMG_0693 And this is what Wills has done to my refrigerator. Please note the pink and purple high heels on Virginia and me. Too funny!