The Respite


You are in a plane. There are no rows of squishy comfy seats, no TV screens, nobody patrolling the aisles to provide for your comforts. It is dark inside this plane, you are sitting on the perimeter along with other persons whose silhouettes line the walls.    Then suddenly a door opens next to you, light and wind streams in, hands grab you and next thing you know you have been jettisoned out into the sky.  You are falling and maybe it should be a thrill or fun but at first it just feels like falling.  That was the trip home after leaving N at the inpatient intensive intervention (II) program.

The night after we dropped N off at II, we sat in the living room in the dark, unable to speak to each other.  We sat there, lost in our own emotional scatter.  There was a clock ticking somewhere in the bookshelves.  I cannot remember when I last heard it. Outside a blustery fall wind shook the leaves from autumn branches.  I rested my head on the back of the couch and listened to the sounds inside and out, and breathed.  And breathed.

I had to adjust, respite was not instant “happy dance” by any means.   There was the worry and shock.  The first few weeks I worried terribly about how N was coping away from home for the first extended period in his life.  I know how essential routine is to him and he was now off it, big time.  I cried more than once, thinking that we could not tell him he was going to be OK and that we would be coming back for him.  There was also the slap in the face which was reality – the magnitude of how my life had been impacted by 24/7 care giving for 15 years was significant.  I felt numb for weeks.

As N gradually adjusted to intensive intervention, and as we came to see that he was doing OK, then doing well, and then was happy in his new routine, then I began to feel relaxed.  I could relax when I knew that they knew him and how to manage him.  By the end of November I dared to enjoy a few things that I had been missing.  I enjoyed my candles in the evenings: normally I have to be vigilant to be sure N does not try to blow them out and eat the hot wax.  One week we went to 2 movies in the theatre, blowing our 5 year movie attendance record (one movie) out of the water!

Some of the best respite- is ordinary moments that everybody takes for granted – like SLEEP!  Like QUIET sometimes, like PEACE and not having to be constantly on the lookout for the next N-inspired mishap.  Like shopping alone, like watching an hour or two of uninterrupted TV after supper without worry about what happening in an invisible part of the house. Like going to work without the anxiety that your working day may come to an abrupt end because you must deal with the inability of the community to manage the extraordinary demands that you have been forced to accept as ordinary.

Today is January 1, 2017.  N has been home for Christmas vacation, and tomorrow he will go back to intensive intervention for the final week.  When I see how he has thrived there, how suited the environment is for severe kids like N, I wish that something like it was available to him here at home, at least for some of the time.  I am grateful for the respite break – wish it was longer,  but mostly I wish we had a plan for the future, something definite, something to give me confidence or hope that N will get the care he needs, and I will get the respite I need.  I worry about the return home, as it feels like we are slipping back under a truck, instead of finding our way.


About lifewithautistickid

I am a Chartered Professional Accountant (CPA), with an MBA and BA. I have been fortunate to have had an extraordinary life with an autistic kid. I have learned so much from him about people and life in general. I want to make a difference by sharing my extraordinary experiences. Raising a son with severe autism and developmental disability has made me realize how we who are "normal" do not understand "disability". Instead of trying to "fix" people like my son by burying them in the community, I would like to see a society that respects and honors them for who they are. The potential is endless, in a world that can celebrate with sincerity, the dignity of the individual. Love and blessings to people of all "disability" . That includes you and me!
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1 Response to The Respite

  1. Eileen Casey says:

    I’m comforted to read that it was good for him, as I may be in the same position in a few years. We also had the same problem with candle wax – the phases come and go – just recently, I’ve been able to enjoy candles again. 🙂 (I tried to list my website, but it keeps saying it’s not a valid URL –

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