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Karen Wang
BY Karen Wang

STRESS: The 20 Things I Need to Remember Every Single Second for my Child With Special Needs

S.T.R.E.S.S.: Stuff To Remember Every Single Second…

Stress and burnout are well-documented side effects of being a caregiver.  As for myself, I know that I risk triggering double or triple meltdowns with every little decision I make all day long.  As the primary caregiver, I can see that my daily choices will quickly turn into my son’s future, for better or for worse.  That’s the source of my stress.

On the bright side, I like to think that the incessant demands on my attention have sharpened my mental and physical reflexes – whether acting as a human shield to break falls and prevent crashes, or intervening with my home remedies in a crisis.  The impact of those little decisions is amazing.

Brenda, the administrator of the Facebook page Autism With a Glass of Wine, recently defined S.T.R.E.S.S. as “Stuff To Remember Every Single Second.” That’s an accurate summary of the caregiver lifestyle, so I decided to jot down some of the thoughts racing through my mind this week that were just too important to forget:

My S.T.R.E.S.S List

1. The bus is scheduled to pick up at 7:53am, but it usually arrives 9 minutes early.

2. If I walk away from the child doing his homework for 1 minute, he will automatically stop working and wander off.  If I look away while he’s eating, he stops eating.

3. In a moment of weakness, I promised a trip to the art museum on Saturday, April 26, 2014, and there will be dire consequences if I forget – but that won’t happen, since I am conveniently reminded of the date at least 53 times per day.

4. The latest issue of Lego Club magazine was last seen beneath a pair of dirty socks under the sofa.

5. Broken toys are faithfully preserved in a special box in the basement for 1 year before they vanish into oblivion.

6. Two weeks of data for eating, sleeping and bowel movements are graphed out inside my head to predict patterns for illness, mood changes and productivity.

7. The intake and medical history from that new doctor is 42 pages long, and I’m the only person with the information to fill it out.

8. Agitation and irritability may be symptoms of a medical condition or illness, anything from seizures to the common cold.

9. Agitation and irritability may be symptoms of the desire to create awkward situations, such as trying to kiss strangers or saying something like, “Mom doesn’t like it when I talk about diarrhea in public.”

10. Plan all the school parties and carnivals to make sure it’s possible for my son to participate.

11. Enforce the rule for a 5 minute exercise break as often as necessary, because it really works.

12. Still $550 away from meeting the $5,000 insurance deductible.  I should be happy, because it means there were no ER visits this year.

13. Make the chamomile tea at the beginning of an activity so that it’s cool by the time he needs it to calm down – library on Tuesday, social skills on Thursday, gymnastics on Friday, Friends at Home on Sunday.

14.  It’s a secret: the paper placemat from IHOP is in the recycling bin – but it can be retrieved in an emergency.

15. If I let my guard down, I will immediately get poked in the eye.

16. I had to go to three different grocery stores to find the three favorite breakfast foods, but it was worth the effort just to see him eat something.

17. Put dinner in the oven before homework so that it’s ready as soon as homework is finished.

18. I can’t return the overdue library books until I minimize the risk of public meltdown by making sure that everyone is fed, has used the bathroom, hasn’t left behind any favorite toys and all conflicts are resolved.

19. Noodles are boiling on the stove.

20. I am the grown-up here.

What is your definition of stress? What are you trying to remember every single second?

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Karen Wang

Written on December 5, 2013 by:

Karen Wang is a Friendship Circle parent. You may have seen her sneaking into the volunteer lounge for ice cream or being pushed into the cheese pit by laughing children. She is a contributing author to the anthology "My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids With Disabilities"

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