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It’s complicated

My 102 year old grandmother’s health is failing.  She is affectionately known as Grammy and she’s been one of the dearest and most influential people in my life.  In August, she’ll be 103 and up until last month, she’s been doing pretty well, considering.  But now she’s not. 

Last year's birthday party, 102 years old.  what a smile!

Last year’s birthday party, 102 years old. what a smile!

I’m compelled to make the hour and a half trek (one direction) up to see her every weekend.  When I’m sitting beside her bed at the nursing home, I don’t want to leave.  The hours pass and I know it’s getting late and still, I don’t want to go.  I’m content to just sit and hold her hand.  Just…be near her.  She can’t really carry on a conversation, but I know she hears what’s happening around her as she drifts in and out.  Sometimes she’ll respond with a small nod or shake of the head.  It’s enough.  She’s still here.  So I treasure the time I have left and I stay.   I feel like I could just sit there for days at a time, next to her bed.  I literally have to force my feet to get up and walk away to make my hour and a half  journey back home.

Then…I wait for the next weekend to roll around so I can go back.  I love her so much.

I work everyday at a full-time job from 7:30 a.m. to 4 p.m.  In the evenings our family usually has commitments.  Bible Study at our house one night a week.  Voice lessons another night.  Various other events, meetings, groups, get-togethers, and appointments, not to mention the boys’ social lives.  Saturday treks to see my Grammy and then church on Sundays.  Then, lo and behold, Monday rolls around and we begin the cycle again.

These events are often interlaced with Eli’s challenge-of-the-day.  Whatever that day may hold, be it vocal stimming, or emotional upheavals or lashing out or a bad anxiety day.  Those things are a constant.  The threat of discordance is  always there no matter what else is happening in our lives.  And Ben and I have to be ready at all times to handle it, to deflect it, to avoid it if possible.  That responsibility, that vigilant awareness, watching for triggers, listening to tones of voice, paying attention to the 0-60 emotional responses, THAT does not ever end.

Every single one of these things are something I either WANT or HAVE to be doing, so this isn’t complaining.  It’s just that life can be difficult.  It’s busy.  It’s complicated.  It’s exhausting.   And I know our lives are not as crazy as some others.  I’m not telling you this to start a competition.  People always seem to want to one-up-you by saying, “Well, that’s nuthin’!” and then break into a personal list of insanity which serves as their life.

The point is…we’re all busy.  We’re all living in our own realm of chaos.  And sometimes we forget about “Me”.

Grammy & her cake from her last birthday, 102nd birthday!

Grammy & her cake from her last birthday, 102nd birthday!

I don’t mean ME personally.  I mean we all forget about ourselves.  YOU forget about YOU.  Don’t you.  You know you do.

And I forget about me.

So recently I’ve been trying to remember Me. 

Hi Me!  Haven’t talked to you in a while.  Haven’t thought about you, considered you or taken care of you.  I’ve been too focused on everything and everyone around me.  Yeah, yeah…I know.  We’ve had this talk before.  Know what?  We’ll probably have it again!  I’m just hoping that the time in between these talks will become less, and the time we ARE talking will become a daily thing.

Hear me, Autism Mom’s and Autism Dad’s and Special Needs Parents of all varieties.  We feel as if we can never die, don’t we.  That’s not a question.  We don’t.  We have to be here – forever –  to advocate and educate and guide and protect and make it all better when no one else can.   We’re not all going to be blessed with over a century of life.  And the cold hard fact is…if we don’t start considering our own needs once in a while, taking a break, taking care to monitor our mental states, give ourselves permission to de-stress when we need to….then we’re going to die a lot faster.  The levels of stress we live at are not healthy levels.

An article written by Michelle Diament which I read a while ago mentions that Autism Mom’s  “…experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions…” 


“This is the physiological residue of daily stress,” says Marsha Mailick Seltzer, a researcher at the University of Wisconsin-Madison who authored the studies. “The mothers of children with high levels of behavior problems have the most pronounced physiological profile of chronic stress, but the long-term effect on their physical health is not yet known.  Such hormone levels have been associated with chronic health problems and can affect glucose regulation, immune functioning and mental activity, researchers say.”


“On a day-to-day basis, the mothers in our study experience more stressful events and have less time for themselves compared to the average American mother,” says Leann Smith, a developmental psychologist at the University of Wisconsin-Madison who worked on the studies. “We need to find more ways to be supportive of these families.”


Let’s face it.  WE NEED A BREAK.  So give your wife the time off she needs.  Give your husband the break he needs.  Family members and Friends get involved.  Learn about the child who is struggling.  Establish a report with her.  Jump in with both hands and feet  — with the parents’ guidance of course! — and learn as much as possible so you can care for him for just a few hours to allow husband and wife some time alone together.  So that maybe they can talk to one another.  And if you’re a single parent, then darling…you need this most of all!  Find a way!  A friend, a parent, a sibling, someone….just a couple of hours away, so you can have a break.

Make arrangements to go to that movie with a friend.  Lunch with your sister.  Let mom have a girl’s night out.  Let dad go hang with the guys for a few hours.  Go for a walk.  Go to a play.  Make it happen. And if you need more than that, talk to your Dr. about your options.  Getting some medical help when life becomes too overwhelming is not a crime or of anything to be ashamed. 

Because our darlings need us.  And we need to be here for a long, long time.  So we have to take care of “Me”. 

We have to.


Comments on: "It’s complicated" (1)

  1. Grandmas are angels on earth in my opinion. I miss mine everyday- she’s been gone 13 years and was 97 when she passed. Bless you Kim for visiting her every weekend- it’s so hard but in the end, you’ll never regret it & be glad you were able to be there for her….

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