One Year Post Activation

Eden had an appointment this week for her 1-year post activation evaluation. Her cochlear implant was activated last year on Halloween. The speech and language evaluation showed a lot of scatter in her skills, which is to be expected, but overall her receptive language is at least where it should be, in the 12-15 month range, if not above. She is listening very well, and it has become natural for her. She also understands a lot of what she hears, can follow simple directions, and can identify many objects and familiar people by pointing or eye-gaze. She is clearly a genius:)

Eden's expressive language is not coming along as well as I had hoped and envisioned when she got her implant. This is not due to her hearing at all. Her newest audiogram shows that she is hearing all of the sounds necessary for speech development, and her hearing is essentially in the normal range. The difficulties that she is having with expressive language are due to the Cerebral Palsy. Often times, children with severe CP are not able to talk because of poor oral-motor control. They are not able to control the muscles of the face to allow them to form words. This is not Eden's problem. She has fairly good oral-motor skills. She is able to easily move food around in her mouth, swallow, and uses her lips and tongue very well. Her difficulties are all related to poor trunk control and lack of adequate breath support. I had no idea how much her low trunk tone would affect her language development.

I go through many ups and downs in any given week. In any given day really. This week I am feeling very down again thinking about the difficulties that Eden will face in learning to communicate. The speech therapist talked a lot about getting Eden started on some sort of augmentative communication system. At this age, it would be some sort of picture exchange system, moving to a computer as she gets older. This therapist thinks that Eden will learn to talk, and will be able to speak in sentences to us at home. She thinks that Eden is going to need support in talking in a group setting or when giving any sort of presentation in school or at work when she gets older. Becaue of her poor trunk support and breath control issues, she has a hard time projecting her voice and tends to be very quiet. In the future, she will likely have trouble maintaining control of her voice long enough to carry on lengthy conversations.

On my journey toward learning to accept Eden's disabilities, I keep having to continuously revise my vision of what she will be like as a child-teen-adult. In the beginning, I thought it was the end of the world that she could not hear. With the CI, it was easy to get over that. Then came the diagnosis of CP. We were told early on that it would likely be mild. I met a lot of kids with mild CP, and realized that I could handle it. No big deal. As Eden has gotten older, and we have come to the realization that the CP is more significant than we originally hoped, I have even gotten to the place where it's ok if she never walks. I have pictured her in a wheelchair, sitting up, wheeling herself, talking, laughing, just being a normal kid in a wheelchair. I can handle that. It's hard, but I can deal with it.

Still, things are ever changing. Eden is two and cannot hold her head up, or sit up. What if she can never even sit in a wheelchair? What if she need a wheelchair that reclines and that she has to be strapped into and be fully supported? Can I handle that? Who knows? Maybe I can. As long as she is happy and can think and talk. More than talk. Communicate her ideas and emotions and dreams. Be fully involved in her world. This is what is the most important to me. I can see in her eyes that she is smart. She is taking everything in. She has an amazing sense of humor and determination. She is empathetic and a good problem solver. I do not want her dreams and ideas to be stifled by what her body can or cannot do.

Eden wants to do everything. Just this morning she was yelling at her sister to get off the bike because she wanted a turn. She was crying and pulling Holland right off the bike, then looking at me to pick her up and help her ride. She wants to run around with the other kids, she wants to wrestle and chase the dog and play the piano and jump on the couch and build towers and push the shopping cart. She knows that she needs help to do these things, and she demands help when she needs it. I do not want the light that I see in her eyes to go out.

Language is everything. It is the foundation for learning to read and write, and even think. Already Eden's brain is beyond "what's that" and "up, up, up" but those are the things she can say. There will be a point, if she doesn't learn to talk and express herself, that her learning will be stifled. I cannot let that happen. So, I guess I will start learning the picture exchange communication system, and will start learning our options as far as assistive technology goes. It is so hard for me to let go of the idea that she will be a normal little girl in a wheelchair. And I'm not ready to let go of it entirely. We'll do the pictures and we'll do the computer, but I'm holding out hope that she will talk just fine. But even "hoping" has become hard...