First respite visit

Yesterday we had our first visit to a new respite house.

We had been to two other respite establishments previously. The first one closed. The second one nick stayed at twice but after that they never returned my calls. It has been over a year now since we have had a night of respite.

It is not easy for me to put him somewhere overnight. How it feels to leave him, even in a safe place, is hard to put into words because we don’t really have any for these feelings: painful gratitude, anguished relief. I need the break, my husband and kids need the break, but there is this terrible emotional flipside, built up from social values, mores, and the human heart. Paradoxically the longer the gap between respite visits, the stronger the juxtaposed emotions, and the harder the respite is for me to enjoy freely.

I explained to Nick he was going to a sleepover, just like his big brothers sometimes did. While he was at school I packed his overnight bags and loaded them into the car. After school we drove to the complex of group homes. As soon as I unloaded the overnight bag, in an unfamiliar setting, Nick immediately began to protest: no, no, no! He grabbed my arms and attempted to push me in the direction from which we had come. He was onto me. He sensed he was staying, he was conscious of the impending unfamiliarity.

I had to handle this carefully. I could not let on any hint of my emotions, especially any anxiety i felt inside, or we did not stand a chance of getting in the door. I wrested myself free of his grasp and put the overnight bag back into the car. “Let’s go in, Nick!” I said cheerfully. “Let’s go see inside…”  Miraculously he followed without protest.

Once insidethe home there was all the paperwork to complete. Nick paced and wandered around anxiously, clapping his hands loudly, and yowling. An older boy with multi challenges who had arrived before us began to cry. I told Nick to be quiet, he was hurting people’s ears. He toned it down a bit, with a few reminders needed.

I affected my very best relaxed external appearance, being conscious of my tone of voice, body language, facial expression and so on. Nick easily picks up on whatever sentiment that i wear. I repeated to him “Nick is OK” and “Nick is going to have fun!”. With time he calms down slightly. Once the paperwork is done I sneak out to get the overnight bag.

Then it is time to say “goodbye”. I tell him “first dinner, then play, then sleep, then mommy”. He repeats it back to me so I know he understands. Then one of the respite workers takes him to the swing. I make my escape.

Walking back to the car, the tears roll down my face. At last I can let loose everything pent  up inside, the whole situation, the unfairness, the cruelty of it all.  Why am I having to do this?  I have to take care of a child who I cannot take care of, nobody could take care of, on their own, so I have to leave him even though I love him just the same??  Who wants to be needing a break from caring for their own child? Who wants to carry such a heavy load?

Apart from the time of leaving him at the home, which was hard on me, respite went very well. Everybody in my family had a relaxing break that nite, even I did. I spent the evening knitting, and during the night I did sleep without interruption. This is truly one of life’s underrated pleasures and great gifts!  I have now booked a weekend off, 2 nights at the respite house, next month.  I let go slowly, cautiously, relaxing with each inch that I release of the tight cord of a fully supported burden dangling beneath me.


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!
This entry was posted in Autism Challenges, Autism Lessons, Helpful, Nicholas' Story and tagged . Bookmark the permalink.

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