Tuesday, July 21, 2015

What Defines Us

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 M. 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 how they interact with P.)  But doesn't his brother's existence, his very twin-hood, define M. 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?

P. has spent the last 10 days at a local camp that serves children with special needs and those who are economically disadvantaged.  Amazingly, this is his 5th year attending.  That's hard to believe when I think of how we chickened out and decided not to send him at the eleventh hour the first year he was eligible to go. We only agreed to let him go the following year because our amazing friend K. volunteered for the week and was able to send us daily reports.  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 M. begged to stay because "who will take care of P?"  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.  We talked about him constantly.  The second, third and fourth years he attended, P. jumped out of the car when we got to camp.  We felt more comfortable leaving him, though we still cried on the way home.  Still, we ventured farther afield with M. and were able to stop worrying for longer and longer periods of time.

This year P. was excited to go, he started bouncing in his seat when he recognized the road.  But he didn't leap out of the car.  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 P. 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.  M. had a camp the same day and we had to get him where he needed to be on time. 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.

Without having to get up for summer school, we all indulged our night owl tendencies and slept in later.  It was very quiet. I felt more successful in my attempts to meditate.  We spent all day gardening or at museums or fossil hunting or visiting Toronto.  We even saw a movie that wasn't animated.  We ate out at restaurants without caring whether pasta was on the menu.  We shopped for furniture without worrying about whose patience was waning.  There were no complicated vitamin regimes to prepare (and consequently, none of us took our vitamins either).  My husband and I each went to events without in-depth discussions of schedules. We didn't think about therapies. I went to work and didn't panic about being home in time for the bus.. No one's bowels were the topic of conversation. No one needed their meat cut or help getting their teeth brushed. I didn't have to translate anyone's communications.  I almost never had to look at someone's clothes before they left the house to make sure everything was on right. We were able to take long showers without making sure someone else was watching to be sure P. didn't wander outside in his underwear or decide to sit in the hot car or eat the entire contents of the cold cut drawer or try to turn on the stove or drape the waiting laundry over the furnace and hot water heater.

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.  And when it was sunny, we worried he was giving the counselors a hard time getting out of the pool.  We hadn't sent as much food with him this year, was he eating most of what they served?  In the past he has gone to the Christmas in July session -- was he wondering where the tree and the decorations were?  Perhaps there was a theme for this session that we should have known about and talked up.  I noticed that M. was sleeping in his brother's bed.  He didn't want to do some of the things we suggested because he wanted P. to do them too.  He invented a new game that he couldn't wait to show his brother how to play. The large hole in the day was more than just P.'s absence.  I found myself constantly analyzing thoughts and emotions. What exactly was different this time?  And why was it different?

And then as we were in the kitchen last night, making P.'s favorite pasta salad for his welcome home meal and talking about what time we had to leave this morning, my husband hit the nail on the head.  "This week has been too easy.  It feels wrong somehow."  With just M. 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 we have never 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.  I have washed all the bedding so that Barney and Blue and Buzz and Woody can go back to their normal places.  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, P. has signed "more" and said "more camp" and "go camp" several times since we arrived home.  He is trying to get used to the normal routine again too.

This year, camp gave us a taste of what life might be like when M. and P. 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.  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.

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