respite ringRESPITE – [res-pit] – noun

1. a delay or cessation for a time, especially of anything distressing or trying; an interval of

relief: to toil without respite.

2. temporary suspension of the execution of a person condemned

to death; reprieve.

3. to relieve temporarily, especially from anything distressing or trying; give an

interval of relief from.

4. to grant delay in the carrying out of (a punishment, obligation, etc.).

I am going with #3.  Autism doesn’t go on a courtesy delay, or cease for a bit now and then.  It requires 24 hour, round the clock duty.  It requires somebody (usually me) to be in the general vicinity of CJ day and night.

I won’t bother going into the various studies and opinions.  If you want to explore whether or not it’s true that mothers of adolescents or adults with autism have stress levels equal to soldiers in combat zones, be my guest.  I can’t say what my stress hormone levels are, or what’s high and what’s low in my body or bloodstream.  All I know is that sometimes, it’s sort of okay, and sometimes, it feels relentless and exhausting and sad and awful…really awful.

We are blessed, and I do mean blessed, with state-paid respite services under the Medicaid Waiver program.  This means that I can call an agency and request to have someone come to our home to stay with CJ so that I and/or my family can get out of the house and have a break.  Some of the people who come are amazing.  Once, we had a wonderful woman from the Bahamas who was a grandmother.  She was kind, willing and interesting to talk to.  Unfortunately, she had a full-time job and limited availability.  Eventually, she quit doing respite care.  It’s an ongoing problem.  Respite workers are trying to help…trying to provide a service.  But they get paid very low wages and rarely have enough hours.  They can’t make a living and they end up quitting.

When it comes to time, they are often unreliable.  Because of the low pay and limited hours, you can pretty much assume that most respite care workers have exhausted their other work options before they arrive at your front door.  If they arrive at your front door.  Among people who use respite care, it’s a well-known fact that you can’t generally count on them to be where they say they’ll be, on time.  Sometimes you get lucky.  Sometimes, you are left sitting  on the sofa as the sun goes down with tickets to a movie that started a half hour ago.

Sometimes, it is just not worth it to go through the process.  I have to weigh the time and frustration costs.  How much time and energy is it going to take out of me to get someone for a few hours on a Saturday afternoon so I can run errands?  Would it just be easier to just take CJ with me?  Would it be easier to just go at another time on another day?  How big a pain is CJ going to be if I take him with me?  Some days, he’s fine to go.  Some days, it’s a social and psychological nightmare.  Trust me, if he doesn’t want to do something, he can ruin your time.  You have to see it to believe it.  There is just something about a 6 foot tall, full grown young man pitching a fit in the middle of a store yelling, “Mom!  Mom!  I want to go!  Let’s go!”  For some reason, that really draws attention to you.  Those days can be really REALLY frustrating.

On the other hand, calling for respite, making precise plans, speaking with the agency and then directly with the respite worker, giving directions, and getting all one’s ducks lined up in a row, only to wind up watching the clock spin around as the hours of the afternoon disappear with no respite worker in sight…well, that can be several kinds of frustrating too.

So…I can commit to one kind of frustration, pretty much guaranteed, but 100% sure that I’ll have my groceries at the end, or I can take the longer shot, cross my fingers and hope that I’ll have a few hours to myself to recalibrate and do the hunting and gathering in peace, but possibly end up frustrated, trying not to be angry, trying to keep my perspective and understanding…and still needing to drag a reluctant CJ along for groceries at the end of it all.

If autism is a gambling casino, respite care is the roulette wheel.

It has been a great summer.  We were able to go to the beach with family and then managed to tag along with friends for another week at the beach.  (It is great to have friends who just let you and your craziness come along with them!).  The only really tough part has been getting a “respite”.  See # 3 above.  It’s all been fun and it’s been MUCH appreciated support from friends and family…but it hasn’t been a break.

I decided that desperate times call for desperate measures.  I got someone to come last weekend.  I had her come Friday, Saturday and Sunday evenings.  I had no plans.  My husband was working into the evening.  My daughter was at a friend’s for the weekend.  My friends were all out of town or not available.  No matter.  Friday, I ended up wandering around Target for several hours and then meeting my husband for dinner.  Saturday, I wandered around the mall for more than 2 hours.  Sunday, we took a friend to dinner for her birthday and spent more than 3 hours at the restaurant just talking.

It was all so ordinary.  It was all so normal.

I realized something very important.  Even when I think I’m doing okay, I really DO need respite.  I need some time alone.  I need some time away.  AWAY.  It is OK to need time.  I often think of what people say…you are no good to anyone else if you don’t take care of yourself.  On planes, they say that you should put your own oxygen mask on BEFORE helping anyone else.  Parents, and women especially, tend to take care of everyone else before themselves.  I (and many people I know) need to remember that we are better people, parents, spouses and friends, if we take care of ourself.

For me, the mom of an adult son with autism, a walk around the mall alone is a mask full of oxygen.


One comment

  1. Esther Voorberg says:

    Wow. You must have a super hero cape hidden somewhere… I love to read your words and your heart. Breathe deep, sweet lady, breathe deep.

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