Want Ad

My son lives at home with my husband and me and my two younger children. For now, that arrangement works just fine. Like other young men his age, however, he’d like to go places and do things that don’t involve us. I would like that too. In order to accomplish that, I have to pay someone to spend time with him. That’s a fact of life, a situation I’ve gotten used to for the most part. Over the years we’ve had a few respite caregivers, but of course arrangements like this don’t last forever. The people we came to trust, and to whom Cliff became attached, ended up moving on for various reasons. Some were working their way through college, one had a baby, and a few found full-time work.  A couple of them did not measure up to our expectations, so we didn't invite them back. Our favorites were those who did it for the love of working with individuals who don’t possess the abilities needed to wander the world without help.

I had an idea for an ad that might attract a few good people, because Cliff needs to get out of this house and away from us once or twice a week.  Here goes:

Wanted:  man or woman to hang out with 28-year-old occasionally quirky, occasionally loud, occasionally stubborn but always charming, young man with Down syndrome. Preferred activities: hiking, restaurant-hopping, movies and concerts, bowling, dancing, basketball, window shopping, or any combination thereof. Must be young at heart, honest, appreciative, and accepting of, differences, have a good sense of humor and be okay with walking at a leisurely pace. Patience is crucial, as is tying and re-tying shoelaces several times a day. Experience in the use of singing/dancing to get a laugh is helpful. Must have safe car with working seatbelts, good tires and a radio set to lively music.  Successful candidates will receive compensation and, more importantly, a loyal friend for life.

The ad is not your typical ad, I realize. I’m certain there are people who fit the description; I just have to find him or her, someone  genuine who likes my kid and wants to hang out with him. Be his friend. Stick around awhile.

Until about a year ago, Cliff spent nearly every Saturday with J. a young man he knew from work. J. was Cliff’s job coach for a time, and Cliff was fond of him. We liked him too. We hired J. to be our respite provider not because we needed a break from Cliff, but because Cliff needed to spread his wings beyond this house with someone his age. J. would arrive around noon to bring Cliff out for four hours. It was great in the beginning. Cliff was overjoyed when his friend showed up, and my husband, Ken, and I felt the same way; if Cliff was happy, so were we. The relationship between J. and the Taylor family lasted close to two years.

Before Cliff left the house with J., I would get a verbal itinerary of the next four hours. Naturally, I assumed they went where J. said they were going. Bowling, the mall, out to lunch and to the park to play basketball. Once, when J. said they ended up at his apartment instead of the places on the original itinerary, he explained that the plans he made had fallen through for some reason. Instead of checking in with me for an alternative plan, J. had driven Cliff to his apartment where Cliff fell asleep watching TV in J.’s living room.  Cliff isn't much of a TV watcher.  It wasn’t fair to him to be plopped on a couch in an apartment I’ve never seen, possibly with people I don’t know.  I sat J. down one Saturday and explained Cliff was not to go to his apartment. I reminded him of the obligations he accepted when we agreed to employ him. Cliff had to come first. J. had to always, always tell the truth.

Then, one afternoon, Cliff returned from his day out looking exhausted. The two of them had walked the perimeter of a small park for half the allotted respite time. (I am prompted here to use the inappropriate yet perfectly expressive question: WTF?) With so many other activities available to them, I couldn't fathom how he made the decision to drag the time out in that way.  For a few weeks afterwards, I set the itinerary myself, along with instructions to call me with any changes.  He agreed, but I couldn't shake the feeling that J. did what J. wanted to do, despite my best efforts to control the situation. My intuition kept telling me to check for holes and tears in the fabric that held this friendship together.

One Saturday, just before leaving with Cliff for the afternoon, he told me a story about his boss at the pizza place. The boss wanted him to work during the time he usually spent with Cliff. What he said to his boss was, “Ok, it’s like this: I can work for you for $7 an hour or I can go hang with Cliff for $15 an hour.”  He chuckled like he hadn’t just stabbed me in the heart.  He said it twice more over the next few months. I had planned to discuss the hurtful comment with him but I never got the chance.

Last summer, J. just stopped showing up.  I called and texted but got no response.  For the next two months, there was no communication between us. Shockingly, around the time Cliff and I had become accustomed to J.'s absence, I received a phone call from a woman who said J. had listed me as a reference for a job at a group home for adults with intellectual disabilities. I told the woman J. had cut off communication with us with no explanation, and that I questioned his dependability. I could not, in good conscience, give him a good reference.

“J. told me his phone had been stolen. Perhaps he couldn’t contact you.”

"How is that acceptable? I have to believe that somewhere in the state of Rhode Island there was a phone he could have used. My son has been disappointed over and over again for weeks, and I could never explain to him why.” 

Two days later, on Cliff’s birthday, I received a call from J. He remembered what day it was but didn’t ask to speak to Cliff. He wanted to know if he could start working with him again. He never said he missed Cliff. Never asked how he was doing or what was new in his life.  Naturally I asked him what had kept him away for so long. When he said he didn't have a phone, I let him know that just didn't fly. While I believe he was fond of Cliff in his own way, and that his mistakes might be attributed to immaturity, I can’t imagine a scenario in which J. will ever be a part of our lives again.

I knew how much Cliff liked and missed J, but J. had let him down. After all the time they had spent together, J. didn’t have respect for Cliff’s feelings, or for mine.

Cliff’s brother, Max, weighed in when he heard J. had tried to get his “job” back. “Mom, J. doesn’t deserve Cliff.”   I couldn’t have said it better myself.

One of the challenges families like mine face is finding the right people to allow into our lives. Above all, we don’t want our children to be disappointed or hurt, to grow attached only to be ditched in the end. There is a vulnerability that can’t be ignored. Yet, I have to believe there are people and situations put in our paths that do lead to hopeful resolutions.

 The future is full of Saturdays yet to come. I have to help Cliff fill them.