I once had someone ask me if we didn’t, perhaps, identify too much as the family of a child with special needs? I remember feeling bewildered. I didn’t answer. How could I answer? How was I supposed to answer? I wondered what our life looked like from the outside. However that was, it probably didn’t accurately reflect our reality anyway. There’s a reason parents of kids with special needs tend to hang out together. Nobody needs to explain anything. How could we not identify ourselves as the family of a child with special needs? How on earth would it be possible to do less of it?
We try very, very hard to do things with Mark on his own and encourage his own interests. Sometimes our efforts are more successful than others. We don’t expect him to be responsible for his brother too much in the short term, and while we hope he will want to in the long term, that’s not something we dictate to him (though I will freely admit that any significant other he brings home will be scrutinized, especially in regard to how they interact with Paul). But doesn’t his brother’s existence, his very twin-hood, define Mark to a certain extent? In the same way that my having nine siblings defines me and my husband’s strong Italian heritage defines him, the way we grow up shapes the people we are. To what extent do we define ourselves and to what extent is that definition thrust upon us, either by circumstance or accident or luck?
This summer Paul spent 10 days at Cradle Beach. This is his fifth year attending. The first year he went, I remember being amazed at the “veteran” parents who threw a sheet on the bed, kissed their kid on the cheek and left. They just… left. We stayed far longer than we should have that first drop-off and Mark begged to stay because “who will take care of Paul?” For that entire week we didn’t dare move very far from the phone in case he was miserable and needed to be picked up right away. The second, third and fourth years we felt more comfortable leaving him, though we still cried on the way home. Unlike in past years, Paul did not leap out of the car and run for the cabins when we arrived. This year, he treated it more like home. He waved hello to everyone, strolled into his cabin and picked out his bed (top bunk, of course). After we put the sheet on his mattress, he shooed us away. He climbed up and set it all up himself — pillows and blanket and Barney and Blue and Woody and Buzz and water cup just the way and where he wanted them. When it was time for us to go, he didn’t cling even a little bit. I was happy about it in the moment. “Look how mature he’s getting!” We were different as well. We knew he was in good hands and that he would have a lot of fun. We chatted to the counselors we knew. But instead of instructions about Paul we asked how their year had gone and what were they doing now? The walk to the car was easier and we didn’t cry. We had some other appointments that day so we couldn’t dally. It seemed we had matured as well. We had become the parents I marveled at the first year. We just… left. We spent the week doing things that Paul would not enjoy. We all indulged our night owl tendencies (Paul is the lone lark of the house).
That’s not to say we didn’t miss him. Of course we did! When it rained, we worried he wouldn’t be able to swim. We worried about whether he was eating. Mark didn’t want to do some of the things we suggested because he wanted Paul to do them too. He invented a new game that he couldn’t wait to show his brother how to play. However, the large hole in the day was more than just Paul’s absence. I found myself constantly analyzing thoughts and emotions. What exactly was different this time? And why was it different?
And then the night before we were due to pick him up, my husband hit the nail on the head. “This week has been too easy. It feels wrong somehow.” With just Mark to worry about, everything was easy. Had we been experiencing life as a “typical” family? Is this what family life feels like for most people? That’s not good or bad, just something that we have never ever experienced. It felt like we were coasting through life. If we had this existence all the time, we might forget to be grateful. We might forget to strive for someone other than ourselves. We might forget to be cheerleaders. We might forget to be who we are.
As I am typing this, the television is blaring, and the rhythm of lots of little figures being dumped out of their bucket and put back in resounds through the house. I’ve had to negotiate snacks and supervise wiping and cut up meat. At least ten times, I have said, “Leave your brother alone!” I’ve packed the backpack for school tomorrow and made sure the speech device is charged and that we have lunch supplies ready. The vitamins are laid out. Everyone is where they should be and everything is once again as it should be in our world. And to my mixed feelings of gladness and regret, Paul has continued to sign and say “more camp” and “go camp.” For more than a month, he has brought out his suitcase and his backpack and starts gathering his things together. He can be consoled by the fact that he gets to go back for a weekend in November.
This year, camp gave us a taste of what life might be like when our boys don’t need us on a daily basis. Children grow up and move on and parents learn to redefine themselves in the wake of those milestones. We expect our typical children to do that. We’re proud of them when they do. But our children with special needs? We set up trusts and we arrange for guardianship and we put them on a waiting list for an independent living situation when they’re 11 because those lists are so very long. We never talk about our fears that it might never happen. And maybe if we’re totally honest, we’re equally afraid that it will. And yet our children mature and grow just as others do. They become more independent in their own ways and eventually they begin to build a life away from us, even if only an internal one. Even if it is inch by inch over a long period of time. Sometimes it begins with the return to a place they feel at home in, with people they feel safe with. Sometimes it is 45 minutes in a dance class where they can express all the things they can’t say easily. And we have to let them do it. Even when it’s hard. Especially when it’s hardest on us.
I am the parent of a child with special needs. That role does define me. I am the parent of a typical child. I am the parent of twins. Those roles define me as well. But now, maybe, as time goes on… I see that other things, some long-forgotten, and some new, can define me as well. And I will need to sit in the noise with these thoughts until I become used to them.
– Beth Gianturco
danceability Parent & Office Assistant