Susan Senator

Nat, though seriously involved with his autism, has a good life. He lives in a small house with three other young autistic men, and they are overseen by kind, caring staff and a wonderful house manager. The house was started by three of the four families almost two years ago. I had the vision of such a place, a home near me, in Boston, close to parks and YMCA’s, restaurants, shows, etc. Roommates who were his age and had similar interests and similar challenges. They could learn from each other. They could grow together. Some people feel that there should be higher-functioning role models around for their lower-functioning children to model from, but I don’t feel that way. I think people are people and you can find something good and important in just about anyone. If you are living with that person, that is even more true. Two of the other young men would probably be referred to as “non-verbal,” and yet Nat clearly relates to them. They react off each other. They have fun together. They are his bro’s. Talking has very little to do with their happiness. However, tonight a bit more social savvy would have worked wonders for Nat.

Tonight was Nat’s house holiday party. All the families came, even siblings. We brought Ben, who seemed to enjoy himself enough with paper and pen, as well as chatting in front of the football game with one of the dads. Christmas songs were blasting. Hot dinner smells floated from the kitchen. Ned played with the staff’s little kids and the moms were all running around opening packages of goodies, setting up the guys and the other kids with gingerbread men to decorate. It was noisy, chaotic, and full of good cheer as a holiday party is supposed to be.

When we all sat down with our paper plates loaded with potatoes, mac and cheese, sweet carrots, and ham, I stood up to make a toast to the staff. I really feel good about these guys, who work so hard running all aspects of our sons’ lives, and seem to really know our guys very well. I love when I learn new things about Nat from a staff member there. Yonel even went with us on a doctor’s appointment once and really helped supplement my info for the doctor. Usually John, the house manager, comes to the doctor appointments and these days the docs talk to him more than me!

At the party, I tried to do all this justice but I know I mushed my thoughts together because of all the emotions in the room. I did manage to mention how I loved the families and the way the house is working out. We have had our bumps and false starts — like a real family — but things feel pretty good right now.

We did a Yankee Swap, which was my idea, because I wanted the parents, staff and guys to all play something together, like the pumpkin-carving we did at the Halloween gathering. In the Yankee Swap, everyone buys a $10 gift and wraps it. You don’t know who brought what. Then you each get a number and you choose a present from a pile and then you get to swap it with someone else’s — and they have to give it to you, whether they want to or not. It usually makes for a lot of laughs because men will get stuck with a pack of nailpolish (like Joe, one of the dads, did!). The thing is, with a group like us, no one is going to force any of the guys to give something back if they clearly love it. It’s always kind of hard to buy things for Nat, as I imagine it is for the other three guys, unless it’s candy.

And so… Nat’s beloved roommate D opened the sea-salt chocolate toffee we’d brought. Everyone was oohing and ahhing because of course that stuff’s lethally delicious. I didn’t think anything of it when Nat unwrapped an air hockey game, which seemed like an amazing thing to get for just $10. Nat hit the pucks around and I thought, “Wow, he likes it!” He does not usually look at the stuff he’s unwrapped unless it is food, but he seemed vaguely into the air hockey. I asked for batteries so we could try to play.

But all of a sudden Nat was asking for batteries over and over again, and hitting himself and getting upset. It didn’t take long to get him to say what it was about: D’s chocolate candy. Of course. Nat may have liked the hockey, but even $100 would have gone unwanted when you are Nat and your roommate has chocolate! If this had been a “real” Yankee Swap — and if Nat and D were not heavily disabled and truly understood what to do — Nat would have gotten it and it would have been funny. But instead it was a little heartbreaking. Maybe we could have tried to do the real swap thing but it seemed like it wouldn’t have worked.

John, the house manager, came over to calm Nat down, and Nat was really red, but he started breathing deeply as John was instructing him too. Meanwhile I was thinking about the candy. He had said he wanted the candy. That was great, because he expressed himself clearly and accurately. Ultimately, John did get him a piece.  Nat went into the kitchen to eat it quietly. The game was soon over and we started to clean up. I saw Nat on the couch and he was covering his eyes, as if he were still upset. John was with him, and he said he was fine. But he didn’t look fine to me so I came over to him and offered him cookies. Mommy and food to the rescue. Nat ate them and seemed better by the time we were getting ready to leave. We hugged goodbye and left with our odd assortment of loot and full stomachs.

I would say that it was a wonderful party but I did have that little moment of hurt for my dear son, who still can’t always get what he needs on his own. But then again, who can? And has there ever been a party with kids involved that does not have some kind of squabble? Bottom line: Nat has a lot of good people around him — an extended family, friends who understand him, and people to help him smooth out the sore spots. He has many years to grow and learn. I guess we all have to learn to deal with the small bitter taste of disappointment now and then. Good thing Nat could chase his with a piece of chocolate.