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November 5, 2014

“I have come to accept the feeling of not knowing where I am going. And I have trained myself to love it. Because it is only when we are suspended in mid-air with no landing in sight, that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going to. But the miracle is in the unfolding of the wings. You may not know where you’re going, but you know that so long as you spread your wings, the winds will carry you.” ― C. JoyBell C.


(Image is of Mary trick or treating at school with one of her iPads mounted to her wheelchair. On the screen are two icons, one is “Happy Halloween, and the other is “Trick or Treat.”)

We’ve been struggling with this whole language thing for years. I know she has so much to say, so many thoughts and ideas just churning in that beautiful mind of hers…. We’ve tried speech, American Sign Language, PECS, and multiple iPad programs. The iPad is the most consistent formal language we have from her.

So much is going on in that beautiful mind. You can see it… Just watching her think is a gift…. But what is she thinking? What wonderful little morsels of dreams are swirling around in her head? She has no way to tell me….

So today, after three years of working with the iPad on our own, we finally went for a formal AAC evaluation. She has had the same program for three years. Over the years, the data has built up, and the program doesn’t run like it used to, but there are so many more communication options for her in it now. It has been a gift to have this tool- to have some method of proving to teachers that, yes, she does know what they are talking about, and yes, she is understanding the concepts… But still, she cannot navigate it independently, so we have to guess at the right questions to ask… Her hands fail her frequently, isolating that pointer finger is still a major hurdle….  It’s the best we have, but it is far from perfect.

Today we met with the experts. Years of speech therapists, finally we found our way to the AAC specialists. At first I resisted, thinking how much more therapy could we cram into a day? We already have an AAC program….. But then I suddenly became oddly hopeful- maybe they would have a silver bullet- some mind-reading device that could finally unlock the door for her….

We were met by two speech therapists, an OT and a grad student. Our feeding therapist stopped in as well, and Mary’s behavioral aid came along for the evaluation. It was clear that this was all hands on deck. And they saw clearly where the issues were. They were impressed by her tenacity, by her intelligence, by her joy. But they could see what in many ways I feared. This was not necessarily the autism that was keeping her from progressing on the iPad- it was physical – neurological.  It was not some nuance that could be taught or quickly overcome with a different program or device.  Her wrists are weak and the effort it takes to lift them at the angle needed to position her index finger in just the right way to strike the button is exhausting and frustrating.  Low muscle tone and lingering hand apraxias taunt her.  Because she has a thin corpus callosum, it has always been difficult for her to bring her hand across the midline of her body, leaving the buttons on the left side of the screen frustratingly far from her right hand. And they pointed out to me that in many cases, children with this type of brain structure may not know which hand is going to come up when they decide to lift a hand to make a selection- an added level of frustration and motor planning for her to overcome.  The visual field may also be overwhelming to her on pages with too many choices. She has always been fairly consistent when choosing from a field of 3 and has worked her way up in some areas to a field of 8, but after three years, that’s as far as we have gotten. It is far from conversational or useful in terms of navigating the app independently.

I get angry thinking of the amount of effort it takes for her to answer a simple question with yes, or no, or more, or finished. There’s the processing time it takes for her beautifully wired autistic brain to translate a question and formulate an answer. But then she has to overcome so many physical barriers to simply lift just one hand, balance her torso, lift her wrist, make a fist and extend just one finger and somehow manage to guide that finger to the correct response on the screen, assuming that the word she wants to say is even on the screen and she can find it. I have to find an easier way for her. There has to be a way…..

They did have some suggestions, some wrist support to prompt her to hold her wrist up a little better.  More support for her when she is seated so that she feels more secure lifting an arm to make a choice. A list of physical accommodations. A slew of new devices and programs to look at. An overwhelming amount of possibilities, but a lot of caution, a lot of hesitation… and no silver bullet, no magic key.  We will start a new round of speech therapy with a new team of therapists, pairing a speech therapist with an occupational therapist in intensive sessions….

As kindergarten looms on the horizon, I am starting to feel a renewed sense of urgency to find some reliable means of communication. I fear the hushed conversations among some members of her own educational team, I am tired of screaming into the wind that she understands all of it, she knows the material, please stop re-teaching her the same concepts she has already learned, over and over  again…. But with no means to tell them herself, they brush me off as an overly optimistic mama bear, someone living in denial.

She is amazing. She is smart. She is attentive. She wants to learn so badly. I feel so much like I have failed her here, in not being able to find a way to uncover her voice, to give her the means to prove herself, because sadly the burden of proof somehow falls to a five year old little girl. It is we who should be ashamed that we have not yet given her the means to communicate with us. But now, with a new team filled with new promise, I am hopeful we will find something. What that will look like, I have no idea. But I do have hope, because I have her. She is a beautiful, joyful, loving soul filled with promise, filled with stories and ideas, and  I know that someday those ideas will find their way out. For now, I suppose the best we can do is to just enjoy the excitement of watching her unfold her wings.  And that is a gift.


(Image is of Mary, dressed as Princess Anna for Halloween. She is holding a leaf in her hand and looking up towards the trees as though to thank them for this precious gift. The sun is setting on the forest behind her. )


2 Comments leave one →
  1. November 5, 2014 2:50 am

    She is so precious. And, you are such a good mama bear. She is very lucky to have you on her side. I also hope that she will be able to find a way to communicate with you and the rest of the world. I think what she has to say will be amazing. 🙂

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