A Life Apart: Parent Perspective on Living with a Child with Asperger’s

LESSON EIGHT: Managing Stress on a Daily Basis

OBJECTIVE: Identify a new stress buster

Stress How do you spell relief?

Parenting is probably the hardest any of us have ever worked for free – or even for pay. Some days work in the office seems easier. There is more predictability, a distinct focus and a formula for doing things. Plus there is collegiality.
Parenting a child with a disability is often completely the opposite: unpredictable, unfocused, lost, isolated, uncertain.

Winding Road road sign

We have already addressed the issues of isolation. Uncertainty, anxiety and unpredictability all equal stress. Particularly with Asperger’s Syndrome where there is no distinctly marked path. No well-defined road map. The terrain is relatively uncharted, rocky and curvy with no sense of what’s around the next bend. For me much of the stress comes from my son’s unpredictability. I am never sure if he will answer a question or how he will answer. I am never sure how agreeable he will be to any suggestion. One day he is fairly conversant and pleasant and the next day or maybe the next hour, he is more aloof. It’s hard to know what he is feeling or thinking.

Then there is the anxiety about the future. He is 20 and honestly, I never thought it would still be this hard. A therapist asked me recently if when he was little, did I never think ahead or did I think he disability would go away?
I told her point blank that when he was younger, I was trying to survive each day. And had I attempted to look ahead the next 10 or fifteen years, I would not have been able to do what had to be done.

Connecting, communicating, consistency – all these are elements that are the basis of a good relationship. Those pieces are the ones that are compromised in our children. That being said, I know my son has given me gifts I could never have expected.

    Among the lessons learned:
  • Small victories are to be savored.
  • One day at a time, sometimes one hour at a time.
  • “Happiness” starts with a “lower-case ‘h’.”
  • Even a “shy” person can develop confidence and assertiveness.

Picture of Rodin's sculpture, The Thinker
To think about:

What lessons have you learned from parenting your child with Asperger’s or from working with a child with the diagnosis?

Caricature with the caption 'Be good to yourself'

SELF-NURTURING or Who takes care of the caretaker?

EXERCISE:

Who provides you with support? Is it enough? Have you explored all options? (respite, extended family, other parents)

For me, the best stress reliever is getting away for a day or two. As my son is getting older, I can see that one day, it may be possible for my husband and I to go away but thus far, we have “escaped” individually. Only once, on a big anniversary, we took a brief trip to Bermuda. My son’s special ed. teacher, who had become a good friend, moved in and stayed with the children.

Short of getting away, build in mini stress relievers that don’t require lots of time.

  • Take a bath with lots of bubbles, light scented candles around the tub, and sink in. (with a favorite CD playing in the background). If the door has a lock, use it!
  • Exercise. It is no secret that vigorous and REGULAR exercise will alleviate depression and stress and anxiety.
  • WALK. This is the easiest, cheapest and most accessible form of stress reduction.
  • Try something new like yoga or pottery or take up an instrument. Something just for you.
  • Make a “date” for coffee and talk therapy with a close friend on a regular basis or as needed.
  • Find a good therapist.
  • Have a hard cry.
  • Even if there is only one activity you can do comfortably with your child, do it when you feel you can and savor whatever moments of connection you experience.
  • Keep a journal. Writing is very therapeutic. Find one with an attractive cover and write in as often as suits you.
  • Create a sanctuary in one room or part of a room, a place where you put things that make you happy, that comfort you.
  • Establish a hobby. (I have no handicraft ability but I have a green thumb and I use it! Plants and flowers bring me joy and make me feel hopeful.)
  • Find your little pockets of happiness every day. The BIG Happiness (Capital H) occurs very rarely for anyone.

HOW NOT TO DE-STRESS

Picture of several coctails    Two dessert glasses

I am not suggesting that a pint of Ben and Jerry’s ice cream or a glass of wine on Saturday night is out of the question. The key is balance and moderation.

Just as we need to be on the alert for signs of depression in our children, we need to stay tuned in to our own feelings. If you find yourself crying regularly, sleeping more or less than usual, having a change in appetite or loss of interest in things that usually bring pleasure, you may be suffering from depression. Don’t be hesitant about seeking help. A good therapist can be an excellent ally and can evaluate the need for medicine.


This course was developed by Hedy Lopes, B.A., Parent