When was the last time that you were able to slow down, relax, and simply enjoy the relationship with the one you care for? It’s no secret that many of us who provide care for someone we love feel like we’re living a 36-hour day! Toileting, bathing, grooming, dressing, daily routines, the list of things that caregivers have to help do for the ones they love can feel endless. If you’re not careful you’ll spend your entire day “doing for” for child with autism or parent with dementia and never spend a moment simply enjoying “being with” them. I should know because it’s happened to me…
Nowadays, however, I’m learning how to define my caregiving relationship more as “being with” someone rather than only about “doing for” them. That’s an important concept in Relational Crisis Prevention. As most of you know, I’m the father of triplet middle-school aged boys, each one on the autism spectrum. Autism is a diagnosis whose defining feature is a lack of a desire to be social and it is the social deficits associated with autism that distinguish it from other developmental disorders.
Two of my boys, Joshua and Jacob, are on the severe end of the autism spectrum. To put it bluntly, they have almost no desire to interact socially. There are days in which they have not approached me one single time…not once…to say “hello!” or “Dad you want play Xbox with me?”
It is because of their lack of social desire that I have learned from them what it means to truly live in relationship with someone. I find it interesting that I’ve learned the most about relationships and unconditional love from boys who rarely manifest a desire for either one of these concepts. But they have been my teachers and here’s what I’ve learned: to be in relationship with someone means being with someone and discovering along the way that you belong together regardless of your real or perceived differences. Furthermore:
Being in relationship with someone means accepting them just as they are, with all of their limits, but also with their gifts and their beauty.
“Being with” is the expression for that act of being in relationship with someone because one has chosen to be in relationship with that person. I have chosen to be in relationship with my boys regardless of how their disability affects them. You may be thinking to yourself, “Well, duh!” but I know plenty of parents who have not stepped up to the plate to take the time to get close to their child who has a disability!
It is NOT a given that just because you are a parent of a child on the spectrum that you are going to choose to put in the time and effort to develop a relationship with your child. Some of my caregiver friends who have a parent with dementia/Alzheimers have shared the same thoughts about this with me because this diagnosis can also have a profound effect on relationships.
To reveal to someone their inner beauty is to reveal to them their inner worth by giving them your time, attention, and tenderness. To love someone is not just to do something for them but to reveal to them their own uniqueness, to tell them that they are special and worthy of attention. You can express this revelation through your open and gentle presence, in the way that you look at and listen to a person, the way that you speak to and care for someone.
Children who have special needs and adults who have dementia are valuable human beings with as much dignity and worth as anyone else. Like anyone else, they need to know that they are wanted, loved, seen with dignity, and respected. They are an important part of our world, our lives, and they deserve to know that they matter and that they are needed. Being with them, for no other purpose than simply being, is one way of relating to them that reminds them of their worth.
Many of you already do this. But for those of you, who like me, get so caught up in all of the things to do for your care-receiver let me encourage you to start making some time to just enjoy being with the person you care for. No agenda. No “to do” list. Just sitting with him or her, gently holding hands, and enjoying each other’s silent presence…
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