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.

 

About C. L. Roth

C. L. Roth was born and raised in Kansas. She has a deep love for the prairie state, the Flint Hills in particular. She is married, has two sons, four grandchildren, is an artist, writer and full-time caregiver. Life experience has taught her that normal doesn't exist, it's the journey that matters, and the best way to succeed is simply: Never Give Up.
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