Sunday, September 21, 2014


I read this article by a father of a son with special needs yesterday. I have read a similar one in the past. Take a moment to read it:

It raises a good point that most people might never even think about, the statement, "as long as it's healthy", but then what if "it" isn't? Life will end? You won't love your baby the same? I realize that it's a statement that is just part of small talk. It's what people say when they are expecting a baby, but again I ask, "What if it isn't?" I think it's a stupid thing to say, and I'm sure I said it plenty of times, without a second thought. 

What I have been having trouble sorting out in my brain is the idea that Lucy is not healthy. Technically, by definition, I guess she's not. Lu can't talk with her mouth, she cannot walk independently, she cannot use her hands functionally, she has to have a feeding tube because her mouth isn't capable of efficiently eating enough food to nourish her body, she holds her breath, grinds her teeth, has low muscle tone, tremors, wears braces on her legs, has chronic constipation, gas, and reflux, and takes a pile of medicine daily. AND, now we are worried about seizures again because Lu has started having almost daily episodes of stiff arms, wide confused eyes with dilated pupils, pale splotchy face, and uncontrollable shaking. In the past ten days she has had 1-2 episodes 8 out of the 10 days. We are going in for yet another extended EEG on September 30th to determine what is happening and if seizure medication is needed. So, just one more point against "health" I guess. 

In my mind, I have such a clear separation of who Lucy is and what Rett Syndrome is, that it guess I don't consider her to be "unhealthy". And when I hear people talking about their relief at how healthy their baby or child is, how they feel like they have won a grand prize, I immediately feel indignant. Like, just because Lucy is not "healthy", I didn't win a prize? Like I don't think Lucy is the most amazing, beautiful, incredible child we ever could've created because she was born "unhealthy"? Once, when we were at the training to learn the PODD, another mother asked me in the restroom if I was a mother of a child with Rett and I said yes, and she said, "Oh I'm sorry." I get why she said it, I'm sorry too that Lucy was born with this horrible, debilitating condition, but I have never, ever once been sorry that I am Lucy's mother and as soon as she said it, I felt like she also socked me in the gut.  I am sad all of the time that Lucy's life has to be so hard for her and, that there is so much that just isn't possible for us as a family, but I never feel like I didn't win just as big as every other mother I meet. 

Lucy is Lucy. She is a whole person whose mind, and heart are 100% healthy. Rett Syndrome is a condition that makes her body not work, and in essence makes her "unhealthy". I've said this before, but I have been thinking about it a lot, because Rett Syndrome is not all she is, it is not who she is, she just has it.  It's an obstacle that we have to overcome each day. But in spite of it, her person, her essence, all that she is comes shining through all the time. That's why I guess I don't think of her as "unhealthy" on a regular basis, I just think of her as Lucy; my daughter who loves to cuddle, and play babies and Mr. Potato Heads, and read all kinds of books. My daughter who loves to swing, and ride her bike, and who especially loves to swim. My daughter who loves cheese, and Mulan, and the Magic Treehouse books that she and her Daddy have been reading.  My daughter, the artist:


The author:
(Lu used the alphabet on her Tobii to "write" this.)

The beauty:

It just so happens that she also has Rett Syndrome. 

Tuesday, September 2, 2014

The Hard Way

Last Sunday morning began like any other morning. Lu had her feed, watched cartoons, and was in a fine mood. When we brought her out to the table for breakfast (chocolate chip pancakes!) she got very upset. Tears, quivering lip, scrunched up face, heart breaking cries...the whole works. I persevered for a few bites of pancake, which she ate, but her sadness continued to increase in intensity. I asked her to use her PODD on her Tobii to try and tell us what was wrong. When it opened she immediately said, "I want, cuddle".  I took her over to the couch and after about 10 minutes of cuddling this is what happened:
And she slept for over a half hour, which is a long nap for Lu. We then returned to the table, Lucy full of smiles, and ate our reheated pancakes. At this point, it seems like a simple enough thing that happened: I asked why she was crying, she used her Tobii to tell me, and then I fixed it. But it isn't simple, and the process to getting here, to this point, which I still view as a very beginning point, has been anything but easy. 

The PODD system itself is quite a process to learn.  It is an awkward feeling at first when you begin to carry the book around everywhere with you, especially because you feel like everybody notices. I felt nervous and self-conscious.  It is hard to "Be Zen", like Gayle Porter, the creator of PODD encourages you to be, when you are a nervous wreck about making sure you model enough to teach your child how to use the system. It can take a long time for a child with severe apraxia, such as children with Rett experience, to have a reliable yes and no head movement. 

Then...we decided to begin the process of acquiring her Tobii. I contacted our local sales rep. We did a trial of both the Tobii and the Dynavox eye gaze system. Our early intervention speech therapist wrote out a long, and in depth report on how well Lucy used the Tobii. We submitted everything. Our primary insurance approved it right away, but Lu's secondary insurance, her state insurance, stubbornly denied it over and over. We got it anyway by stating we would pay any part that the primary wouldn't. Luckily we didn't have to pay anything. And that was all just to get it! I taught myself to program it, to make pages, games, and books for Lucy. With the help of Linda Burkhart, our PODD trainer, I figured out how to get the best version of the PODD on the Tobii, and it was a whole different piece of software that I then had to learn, and figure out how to program those pages.

 And those are all parts where Lu wasn't even involved. None of that included actually teaching her how to use these systems. We have been so fortunate to have wonderful speech therapists throughout this journey, first my cousin Danielle who worked with Lucy three days a week for two years, and now our therapist, Roxann, through the intermediate unit.  With Danielle we started from nothing and Lucy learned to make choices, to use her head to indicate yes and no, and then began to learn to use the PODD. And now with Roxann, Lucy has the basics down and is learning how to actually use language.  

I model language to her all day with both her paper PODD book, and on her Tobii, and of course just by talking to her all day long. We always make sure she has one or both with her no matter where she is. Our old pt gave us a mount for on her wheelchair, so her Tobii can always be with her when we are out and about. In her Tobii, there are many places where she can say she wants to use her book, and in her book she can say she wants to use her Tobii. And, I can get almost any information from her with simple yes and no questions as well.  

One of the most important things I took away from our PODD training was that the PODD is not work, it is Lucy's voice. I have said this over, and over, and over again to anyone who has needed to hear it, and I believe that keeping that attitude always in the front of my mind is what has made Lucy love it so much, and what makes her excel at using it. It is hers. She can use it or not. We don't "practice" using it, or ever make her use it. Look at her face in this picture below. We were adding items to lists in her new PODD book which has 64 pictures per page.
She just cares so much. She knows it is all for her, all so we can know her and know what she has to say.

But, it is hard. I will never deny that there are days when I drop the ball and maybe don't model much. I will also never deny that there are days, and times of the day, where it all just exhausts me. On top of all that goes into Lucy having meaningful communication, then we add her wide array of equipment that she needs just to have her body positioned safely and comfortably. The next time you witness a child just standing and talking, or even yourself standing and talking, think of this picture:

You can see extra wide shoes to go over special braces that are needed for buckling into a less than tiny standing frame. Then, her Tobii, mounted on the rolling floor mount that is so weird and awkward I've almost made a habit out of banging my toes off of it. All of this dragged back the hall so Lu could stand and talk to me while I put laundry away. It totally sucks, but I do it because she needs it. She needs to stand, she needs to stay strong, but even more importantly, it is her right as a human to be able to communicate with me whenever she wants to, and so that includes her communication system always being available to her. 

I just feel so strongly that all humans, regardless of their abilities, have the absolute right to be able to communicate with the world. "They are nonverbal" should not be the end of the sentence. That's just not all their is to it. Yes, I can generally tell when Lu is hungry, tired, needs to poop, is bored, etc., but that is not exactly rocket science, that's just being a mother. I would never even dream of saying that's all I need to know about my daughter, and I don't think any other parents should have to settle for that either. In the short time we have been in this world of a Rett Syndrome and learning all their is to know about it, what I have noticed is that there might be a lack of aggression on the part of speech therapists to obtain actual, functional, robust communication systems for children who are nonverbal. Not in our personal experience of course, but in other parents I have met. I did a training on Rett at our school district's paraprofessional conference last month, and in the two sessions I had, there were a handful of aides who worked with children who were nonverbal, and not a single one of them had a communication system of any kind! NOTHING! 

In my opinion, it is unacceptable for a human being to not have a means of communication. That is just my opinion of course, which I can share because this is my blog. It is also my opinion that communication systems are lacking in children's lives because it is hard work. Lucy's speech therapists and Chad and I have busted our butts, as I described above, for the past two years to get her to where she is now.  And I say all the time that this is just the beginning for her, and I imagine that in not too many years, she will be able to use her Tobii as fluently as if she were using her mouth. I believe that with all of my heart. I believe it is our right (and obligation) as parents of children who cannot communicate in the typical fashion to not just request that they be provided with alternative means of communicating, but that we demand it. It is their right. "Communication is the essence of human life..."says ASHA, the American Speech-Language-Hearing Association. I've shared the entire quote before, but that is the part that always pops into my head. Lucy deserves everything in life that all other humans get to enjoy automatically, even if it requires huge amounts of effort on the part of everyone around her. She just deserves it.