We have all seen the Letgo ad for the app that urges people to “letgo” of a sentimental  item they have held onto for years.  But how do we “letgo” of people we love to allow them to do what could be a bit risky?

Most readers of my articles, written for JF&CS, and posted in the blog, are aware that I have a son, age 40, with autism. His life has been a real journey for him and his family but now he wants to actually go on a journey.

He has lived in a group home for the past 20 years.  His father and I have been very active in his life, making sure he has time with family, attending his meetings, etc. Autism is a developmental disability, emphasis on developmental.  Recently we have noticed some changes in our son that are quite interesting.  He has always been non-verbal, using an assistive device at work that he will not use at home. He is also very bright and has shown the capacity to read, although he uses his peripheral vision to do so.

As a child, he had very little eye contact and very withdrawn.  Around the age of twelve, he often became very angry and extremely aggressive to the point where he could no longer live at home and had to be institutionalized (the only available option in 1989). Letting go at that time nearly destroyed my health from the extreme stress that I faced each day, knowing he was no longer with me or his family, even though we visited him every Sunday for 8 years.

Jeremy 2017 is a different person altogether.  On meds for bipolar disorder (finally diagnosed in 1997) and appreciated as being an intelligent person (after we found a way to communicate with him), he has flourished. He works in a sheltered workshop but now, goes into the community to work (another scary letgo for me) 3 days a week with his team. You see, Jeremy still does not understand danger-he will walk right into a car if not watched.  Therefore, he has to have staff near him 24/7.

Jeremy 2017 loves clothes and hats.  Loves to dress up (looks handsome in his suit and tie) to go to the symphony holiday dinners and parties.  As a child, he could not stand a buttoned cuff on his wrists, or any tight fitting clothing at all.

Jeremy 2017 goes to Pirate games, restaurants, picnics and birthday parties. It has also become clear that he processes language better and takes directions very well.  He will also sit through a movie now.

Jeremy 2017 also can use subtle ways to communicate his needs. Thus we continue this story…

At a recent quarterly meeting house staff revealed that Jeremy had been carrying around a brochure listing trips for individuals with disabilities for several days.  So we decided to look into this.  I am thinking an overnight somewhere but then, the manager of his house has found a great deal in October for a trip to Disney World.  Immediately I go into flashback mode….tantrums in malls, only attending his own birthday party for 10 minutes for years, getting lost and not able to tell anyone who he is, the list goes on and on.

But, Jeremy laughs and smiles when he sees pictures of Disney World; he is smart enough to know what it is and also stick with those who are with him.  He will have to be watched closely as they well know.  Of course, there will be much planning done.  A trip to the airport to allow him to see what it looks like so he can keep this visual picture in his mind, social stories to let him know what will be going on.  Pictures of Disney World will be hung in his room, etc.  The trip is in October so there is time to plan and prepare.

Some people are skeptical about this trip. I just know when I see the excitement in his eyes and the smile and laugh that comes from his heart, this is what he wants to do. So this will be a huge “letgo”.  Prayers are being said, beginning now, along with much preparation as well. With Jeremy, “what you see, is what you get” does not apply because there is so much more. So, I will letgo but…will probably not sleep a full night until his return!

This post written by Linda Marino, Jewish Family & Children’s Service

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