Our Social Life Is a Package Deal

Sometimes I ask myself “What social life!??!” and I’m guessing if you’re a caregiver for someone, you’ve asked yourself that same question. The truth is … a social life is really difficult—for us and for our loved one.


We haven’t done research, but in our own life there have been few people to include us as a couple with our son. Besides family, I can probably think of 5 families/situations where we were invited as a whole family in our younger days, or now that our family is grown and gone, just the 3 of us. When someone does include our son in an invitation to us, we are delighted, but there are many more times that the 2 of us are invited and we often must decline the invitation because it’s not always easy to find adult care for our adult child. We’re not sure if people:

  • just don’t think about him,
  • feel he can be left alone at home,
  • or perhaps simply don’t choose to have him join us.

None of the answers are wrong; it just means we probably can’t join in the fun and say yes to the invitation.

Some friends say, “You know Joey is always welcome.” The problem with that is we need to know he is “invited.” Saying he is welcome is very kind, but unless he is asked to join us, we don’t assume he’s invited; and we won’t put others on the spot and ask if he can come.

Along with the social life (or lack of) for caregivers is the social life of a person with special needs. Have you found as we have, that in order to provide a social life for our child, we must arrange it? In addition to us making the calls, the activity often becomes a part of the care-givers social life, too, and not something we might ordinarily choose to do otherwise. Coordinating the effort can be a bit of a challenge – finding the right venues, right people, and right situations.

Joey doesn’t have much of a social life beyond work unless we provide it for him. Mostly we enjoy family occasions like birthdays, Christmas and other holidays. In the past we had opportunities occasionally to make arrangements with a particular friend from his work to include him in our plans. Since Joey doesn’t initiate much conversation, these outings can be a little challenging; yet days later, in his own way, he’ll say how nice it was to spend time with this friend. Including an additional person usually means providing transportation as well as planning the time or event.

We recently received a gracious invitation to dinner and our dear friends said, “Let us know if Joey can join us.” How precious that wording was! “Yes he is welcome but you choose what works for you.” I loved it. No matter what is being planned, it’s very gracious when others realize we’re a package deal.