The Most Invisible Caregiver of All~ Special Needs Parents


by Elissa Lewin~Being the parent and caregiver of a special needs child brings with it a whole host of unexpected issues. From living a life you never could have imagined and coping with the loss of the future you had hoped for, to figuring out how to keep your child quiet and content in a socially stressful setting, yours is a parenthood that requires strength, courage, and a lot of support.

At a time when your sense of how your life will be is totally turned on its head, it is not uncommon to find that support you really need seems to go missing. Somehow, the idea has developed that if you are a parent, then you are not a caregiver; you are just doing what a good parent is supposed to do. Never mind that you need a behavior plan in place for school and a reinforcement schedule to accomplish the most basic tasks of daily living.

Many articles address the inter-relationship of disability and divorce. That is not the purpose of this entry. Rather, this column is to acknowledge the experience of divorced parents who have a child with special needs, whether juvenile or adult, and affirm the need to find ways to care for themselves while caring for their child.

The greatest stresses are placed on families dealing with aggressive and acting-out behaviors. These are also the behaviors that make it most difficult for another person to step in and give the caregiving parent a break. Beware the “it’s easier if I just do it” trap.

It is easy to fall into the routines we know. Particularly if you have a child who has difficulty with transitions, it is understandable to choose the path of least resistance. While that may, at times, be a best choice, we have to consider the further implications.

Is the other parent being disempowered? Is that child learning the necessary skills to adapt to other people and situations? Are other people being kept at an emotional distance? Most importantly, are you allowing the time for self-care if you are single-handedly tackling the to-do list. How are you training other people to respond to you?

If you are in need of some validation for what you do, read Special Needs Parents, You Are Not Invisible, a blog entry in the Huffington Post by Ellen Stumbo.

A useful “how-to” for being mindful of the needs of a special needs child while divorcing is Divorce and the Child with Special Needs by Marie Hartwell-Walker, Ed. D.

Most important, however, is that you take care of yourself. It is easy to see what a child needs; it may be harder to recognize that what they need most is a parent who is strong, healthy, rested, able to make good decisions and respond quickly in a crisis. None of these can happen if the caregiving parent does not take care of him/herself.

One of the moms who has been a guest at Nancy’s House takes care of her 23 year old daughter who has Multiple Sclerosis (MS). After her first respite retreat she said, “If [my daughter] needed a piece of medical equipment, I would do everything I could to get it and to maintain it, because she needs it. I realize I am her medical equipment. She needs me, and I need to take care of myself so that I am there for her.”

Before this guest’s most recent visit to Nancy’s House, her daughter was sick. The guest was tempted to stay home because “it would be easier for me to just take care of her.” There’s that trap. Fortunately, the mom’s friends and parents pushed her out the door to go take care of herself and enjoy the respite. They were able to take care of the sick daughter perfectly well. By the end of the weekend, both mother and daughter felt better, and grandparents and friends had the warm glow of helping someone who needed them. It was a win-win.

Part of being invisible is that some people don’t want to know what your reality is. Another part is that you hunker down, do your job well, and let others get away with not helping.

Sometimes caregivers are invisible because they have not made a point to be seen. Speak up, speak your truth, ask for what you need. You don’t have to do it all. An invisible caregiver does not serve anyone.




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About Elissa Lewin

Elissa Lewin is a Licensed Psychologist and a Licensed Marriage and Family Therapist. She has maintained a private practice outside of Philadelphia for 25 years. Her own experience as a caregiver led to her founding Nancy’s House, a comprehensive respite program for family caregivers. www.nancy'

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