Months after Nicholas was diagnosed I was warned that I needed to be sure to remember the impact on Nicky's sister. I was told over and over, it's not just mom, dad and the child who are changed forever, this is a major life event for siblings too. I was told to keep an eye on his sister. Make sure you don't forget to make special time with her, talk to her, get her in sibling work shops and most of all remember she is going to be affected.
I tried to keep special time with her as part of our routine. I made sure I did not ask her to help too much with her brother (I was so concerned that she would feel responsible for him). In hindsite I'm sure I asked her to help less with him than I would have if he were typical. I really went out of my way to not have Nicky become a burden to her, at least in the ways that I could see. I knew that having him in the house and his constant needs was burden enough, she should not have to help take care of him too.
The embrace the typical part of their relationship, the wonderful sibling remarks from his sister. "Yuck", "I can't stand my brother". "Keep him away from me" and the ever popular "I wish he was never born" can be heard on a routine basis.
Because I worked so hard to not have her take responsibility for him, I really did not know if she felt nervous about his care or fully understood the nature of long term care Nicky may need. However one afternoon when Evyn was 12, we were driving onto a freeway offramp, when I looked up and saw a man comming down the embankment. When I looked in his face, I knew he was autistic. I knew he was homeless and I knew he was alone. I suddenly broke out into uncontrollable tears. When Evyn asked what was wrong. I said "I'm so sorry honey, when I looked at that man, I knew he had autism and I suddenly saw your brother in 20 years.
She turned to me and with a maturity and understanding far beyond her years she said "Don't worry mom, I will never let that happen to Nicky".
It was in that minute that I knew for sure that Evyn understood the magnitude of her brothers illness and the reality that he would need life long care. It was also the moment that I learned that on some level, no matter what I had done to limit her burden, she knew she would be responsible for caring for him, when I can't.
Notes to myself and others
The siblings are impacted no matter what we do
The siblings often build wonderful careers as a result of having a special needs sibiling
Siblings are very special too
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