Social Life :: We’re a Package Deal

  “WHAT SOCIAL LIFE!??!” …is what you might be asking if you’re the caregiver of one with special needs. We’ve asked it! The truth is…a social life is really difficult – for us and for our loved one.   We haven’t done research on this, but for our own life, personally, there have been few people to include us as a couple with our son. We have found that when the 2 of us are invited we must often decline the invitation because it’s not always easy to find adult care for our 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.   We can count on one hand the invitations (outside of our immediate and extended family) which have included our son. 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 you 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. Often their social life is arranged by the caregiver. In addition to us making the calls, the activity often becomes a part of the care-giver’s social life, too, and not something we might ordinarily choose to do. 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. But days later, in his own way, he’ll say how nice it was to spend time with this friend. Including any additional person usually means providing transportation as well as planning the time or event.   No matter what is being planned, it’s very gracious when others realize we’re a package deal.