Monday, April 11, 2011


I come to the Mom Cave today, having just kicked off my conservative heels which I wear but once or twice a year. I'm still in my presentable Talbot's clothing. These items don't see the light of day often either. But, today is a different day.

Today, a friend of mine said good-bye to her mother.

The friend is a fellow mother to special needs. I know her in that setting. I did not know her mother but wish I did. The service was a wonderful tribute to a life well lived, and it is times like these that I can't help but think of the inevitable.

How do you explain to your children with autism where their grandparents have gone when they die? What an awful thing to face. A reality that, once again, calls for the special needs parent to muster more strength than ever thought possible.

In my own life, I have struggled with the effects of autism on family relations. Really, when we are running through the day seemingly with our hair on fire, how, just HOW, do we manage anything else?

My family lives in another state, and our older son simply does not travel well. It takes a super-human effort to pack for him. We then drive eight hours only to have him spend the rest of the time sprinting in and out of the house, in and out of the car, up and down stairs and sleeping very little. Our schedules do not match the schedules of normal people. How, just how, do you manage family relations under these conditions?

How do you teach younger children in the family to not be scared of the "weird" behaviors of your children? How do you facilitate contact between family members and your special children when you are just trying to keep your head above water?

How do you elevate yourself from living this life to living this life with grace?

I guess I don't travel gracefully with our older son. In fact, we have basically stopped traveling with him. Visits to my home town have dwindled. Children are growing without my participation. I've seen family members grow old. Some have died. I did not expect to be an absent member of the family.

We haven't even attempted to travel with our older son to his extended family a few states away. As a result, that side of the family just doesn't know me well.

When we became parents to autism, we had no choice but to go into our own crisis mode. We are isolated in many ways. I don't really mind isolation. I love my husband. I love my house. I have some great friends that I see once in a while. Most importantly, I am focused on my kids. My job is to be a mother.

Still, if there is to be one of my saddest ripple effects of autism, it would be that it changes the relationships that one has with family members. I would regret spending all my time fighting the fires in my own house, that I suddenly find myself attending a funeral for one of my close family members.

The challenge before me is to not merely exist within this life but to find a way to actually LIVE in this life.

To all my family members: I love you.


  1. Love to you from Andy, Deena, Drew, Adam and Ally

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