Join a Club or Something... [the Presence of the Absence]

After some reflection on recent conversations about what my son might do to “fill his time,” I have the following thoughts to share. First, if one more person suggests to me that he should join some community activity, I’m going to just explode. Do you seriously think we have not tried? For the past 18 years, do you think we have just been sitting on our hands, swinging our feet, whistling, watching the world go by? Do you think we have chosen this isolation over better prospects of a meaningful social life? Of course not! But there is always a reason he doesn’t fit in – the language barrier, visual barriers, the need for physical abilities, the need for cognitive abilities, you name it. For those among us who have not experienced rejection, I encourage you to go look up the word. Look up “social norms” while you’re there, too. Which brings me to my second point.

Someone else told me recently that, “we all go through things in life.” Let me explain something – my son is NOT “going through something in life.”  This IS his life. On a daily basis. Yesterday when he collapsed in my arms crying, shaking uncontrollably, I cried with him. He was broken-hearted over the loss of three new “friends.” I could not, in good faith, tell him that it would get better, that this will pass. You see, that is the difference. When typically-developing teenagers cry over friendships or romantic relationships, we know it will pass. We can hold them and tell them so, even though we cry for them in the meantime. But we know it is a phase of life they go through as they struggle to find and define themselves. We understand the value and the power of these peer relationships in an adolescent’s overall development. We know they will have other opportunities to make lasting relationships as they continue to learn how to develop them and as they begin to identify who they want their closest friends to be. My son doesn’t have choices like that. And he never will. He takes what he can get. Period. The end. I can’t hold him and tell him it will pass, because in his 18 years of life so far there is zero evidence of that being true. And it ain’t looking any better.

That said, I am doubly saddened when I think of what he has to offer if the world would have him.  He is brave beyond all measure. He is determined. He is inquisitive. He has a great sense of humor. He never gives up. What he could do if only he were allowed to try. And by try, I mean meaningfully so.

Take a moment, if you will, and imagine yourself as a teenager again. Imagine attending the same school that the neighbors’ kids attend, going to football games (maybe even playing on a team), dating cheerleaders, starring in the school play, singing in the chorus, skipping school to head to the lake for the day with your buddies. Imagine working in a job you want to have, a local pizza joint maybe, because your friends are working there too. Getting excited about graduation, the prom, applying to colleges, dreaming of the life you want for yourself – big things! Right?

Now imagine all that was taken away before you ever got the chance to even experience it, or worse yet, taken away while you watch all of your peers get to experience it just fine. Instead you are bussed to a school an hour or more away. You don’t know the neighbor kids. They can’t talk to you because you speak a different language, and they think you’re weird anyway. Your prom “date” is one of the professionals hired to work with you. You want to work, but no one will hire you to do anything you want to do unless you work in a place which is supported by the local community resource center for individuals with disabilities (think assembly lines – which isn’t actually viable because the bone structure in your wrists doesn’t allow them to rotate properly). You want to go to college, but… lol, never mind. Hell, you just want to go to the store for a cold soda on a hot summer afternoon, but it’s a bit of a walk and of course you can’t drive, never will. Can’t ride a bike either because of balance issues. And well, it’s very hot outside, and your heart condition can’t take the stress of that walk. Oh, and you don’t know how to count money so you have to trust you won’t get cheated, and the clerks behind the counter watch you like you’re trying to steal something, or they call 911 and report an apparently lost and disoriented teenager (who is neither lost or disoriented). Then the cops call your mom, and you’re humiliated in front of everyone in line behind you. And then you soil yourself.

But hey, you know what you should really do? Take everyone’s advice, stop whining, and join a club or something. “We all go through things in life.” Good luck with that…

[And this is what is known as the presence of the absence. It’s when that which we are missing is blatantly obvious every single day. Not sometimes – but every day. Pearl Buck once wrote of her daughter with cognitive disabilities, “I miss eternally the person she cannot be.” It’s a living loss for which we are not permitted the social spaces to grieve. It is the ever-present absence.]

P.S. I'm not whining here. Just trying to help people understand the reality we live with. But those statements, however well-intended, make me feel like I must look like a terrible mom to them or I'm not doing my job because I'm not getting him "more involved in things." And it's just not realistic.