Special needs aren’t always recognized.

I’m not a twin. I started life as a complete, and separate entity. When my youngest son was born with cerebral palsy I gave a great deal of thought about his needs, wants, and dreams. I knew that being non-verbal and non-ambulatory would create special needs for him and for our family.

I disregarded the word ‘normal’ and proceeded to accomplish whatever my son showed a desire to learn. In the process, I lost a good portion of ‘me’. I slid into what I can only describe as a symbiotic relationship. Without thinking, I would ‘answer’ for him. I began to lose the ability to think of ‘him’ and ‘me’ and it became more a case of ‘we’ and ‘us’.

Two began to merge and become one. A reverse sort of ‘twinning’.

Three years ago, a huge miracle entered our life. A computer system, the Tobii-Dynavox, controlled by cutting edge eye-gaze technology, came into my son’s life. He’s non-verbal no longer. It has taken him longer than I hoped to become functional. He’s still not completely where he needs to be but when I think about the process, and everything it involves,  I’m happy with what he’s accomplished.

As happy and excited as I am to see my son emerging, I’m faced with a strange phenomenon. I feel like the egg splitting. The single entity is becoming two. As he emerges, I must step back. I never realized that as he gains an identity, I must rediscover mine.

As this journey unfolds, I will document the experience. Partly, to help myself understand the process of one becoming two. But also to help others who might be going through the same experience. I understand the process better when I can be verbal.

Over the winter, my son will be emerging as a verbal adult. He’s pursuing a goal in writing. The learning curve is huge and the rewards are incalculable. We don’t have a manual to look at. We’re making it up as we go. At the end of the journey, I hope to see him a functioning adult who can make his own decisions without his mother speaking for him.

I need to learn to step away from him and let go. I can’t describe how scary that idea is to me but over the coming months, maybe the right words will come.

 

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