Special Needs Parenting, It Takes a Trained Village


by Elissa Lewin~At the most recent Nancy’s House retreat, Roberta, who was struggling with special needs parenting, had a hard time with our “no phones” rule.  What if her family needed to reach her?  What if something happened?  Her discomfort was almost palpable.

My tongue-in-cheek response was that the house had probably not burned down and that her son probably was not running naked out in the street.  Roberta, with some difficulty, turned off her phone and put it away.

New parents often feel anxious leaving their baby for the first time.  After that first dinner out,  they discover that everyone not only survives, but can thrive.  Their marriage benefits from the time and attention, and their tolerance for stress improves as each re-discovers the support of the other.  Most importantly, they learn that others can step in so they can step out.

For parents whose children are not neuro-typical or who have medical complications, that anxiety does not fade as their child grows.  In fact, it may increase as differences from the norm become more obvious or challenging.  Usual supports, like grandparents, may not be so willing to step in to the caregiving role.

For any of the loved ones for whom we care, there are certain things that must happen, should happen, and it would be nice if they could happen.  Notice the descending scale.  It may help a caregiver to step out of that role if she/he creates the lists that fall into those categories – the “musts” that, at the barest minimum, need to happen, the mid-level priorities, and the low level priorities.  Just the act of triaging can help a caregiver see that not everything is equally important.

If there are specific physical/medical needs, a written “how-to” guide may be helpful. One of our Nancy’s House guests, Pam, has created a guide so thorough, her home care company has thanked her.  She uses the guide both as a check list and training manual to create the peace of mind she needs to be able to step away and take time for herself.

Pam adheres to this orientation process every time, even when it is difficult.   It can be time consuming, but, from her time at Nancy’s House, she has learned the importance of stepping away and renewing.  This is a way to take care of herself while taking care of someone who is medically complex.

It can be helpful to teach a few family members or friends ahead of time how to take care of your child, to educate them on the condition as well as your child’s personality and quirks.  Not only does this allow them to support you, it makes them ambassadors in the larger community for the special needs that require attention and sensitivity.

If there are no family or friends available, it is important to identify the resources in your community that can help provide the support you need so that you can take care of yourself.

Coming back to Roberta, who had such difficulty turning off her phone, it is interesting, and almost funny, to note that the person to whom she was entrusting her son’s care was her husband, the boy’s father.   At the end of the retreat, she thanked me for teaching her that she could, in fact, detach herself from the home situation, turn off her phone, take care of herself and it would be ok.

Both Dad and Roberta learned that he could be a competent caregiver, and the father-son relationship was enhanced in this new way. Roberta learned that she really could take the time to take care of herself.  It just takes a trained village.

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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's-house.org

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