Just when I think I’ve started to figure Clay out, he tosses a curve ball.
He had what we thought was a full Christmas this year.
We spent Christmas Eve with my wife’s family. She is one of five, so it was a full house at her brother’s place. We know from experience to prepare for the possibility that Clay won’t last long. So, my wife and older son arrived around 3 p.m. Clay and I showed up fashionably late around 5 p.m.
The party was in full swing when we got there. (I’ve noticed that the greetings are louder and warmer if you arrive when everyone is already a couple beers ahead of you.) Clay typed “Merry Christmas” on the keyboard he uses to communicate, shook a few hands (my wife’s family doesn’t let him get away without a greeting), typed “Sorry to hear about your dog.” for my sister-in-law who received some sad news about one of the family’s cocker spaniels recently, then shot upstairs to the comparative quiet of the landing. We had prearranged with my wife’s brother and his wife to lock all the doors upstairs.
Pinball boy spent the next 90 minutes traveling a continuous circuit between the downstairs bathroom, a mountain of shrimp in the kitchen, a video we set up for him in the dining room and his second-floor sanctuary. My wife, older son and I acted as sentries, stationed in strategic locations, communicating with hand signals and eye contact.
After wolfing a plateful of brisket for dinner, Clay typed, “We are ready to go home.” We do our best to respect his newly acquired ability to communicate his wants and needs, so he and I hit the road a few minutes later.
Last year we lasted 17 minutes. This year: two hours. That’s progress.
The next morning we tackled the ceremonial opening of the Christmas presents. After 15 years, we’ve learned to let Clay go at his own pace on Christmas morning. He has never been one to wake up early to tear through his presents. Truth is he rarely wants anything aside from Dr. Seuss books and videos, and is extraordinarily pleased when he gets them. He’ll wake up when he is ready. Wants breakfast more than presents. Will open one or two of his gifts, wander upstairs to his room for awhile, come down to open another.
Thidwick the Big Hearted Moose and How the Grinch Stole Christmas were handed over immediately to Mom and Dad for reading out loud. The rest he dropped on the floor for investigation later. The whole process takes a couple of hours, and we just let it unfold. It is not exactly a McDonald’s-commercial-type Christmas morning, but that’s OK. We’ve learned through many teary holidays that the more you get in his face, the tougher it will be. (Plus McDonald’s in the morning leaves you feeling nauseous the rest of the day.)
My parents arrived at mid-afternoon for a visit, carrying a giant bouquet of fruit, which turned out to be Clay’s favorite present. He spent the rest of the day pulling off pieces of melon, grapes, strawberries, pineapple. A perfect Clay set-up. Finger food that you can graze at will.
Late on Christmas night, while the rest of us were lounging in front of the fire in the living room after a quiet dinner, Clay started becoming agitated. He had been bursting with energy all day, driving on all cylinders. A spider monkey on speed. We figured he was succumbing to a headache from all the excitement (and the jumbo box of Junior Mints he inhaled). Not exactly. The following conversation took place between Clay and my wife on his keyboard:
“What is wrong?”
“Why are you sad?
“Sad because we pass sad day of Christmas.”
“What do you mean?”
“A sad day because we are alone.”
“What do you mean by alone?”
“We don’t have family here.”
“Grandmom and Grandpop came to visit.”
“So true, but not Uncle Andy and Aunt Elise and Aunt Bobbi and Uncle Jay and Scott and Lisa.” (My side of the family.)
Go figure. As hard as it is for him to spend time with family—the noise, the crowded rooms, new surroundings, the expectations on him to greet and respond to people, the fuss when he opens presents—he feels sad when he doesn’t get to see everyone. There is a Christmas message in there somewhere. I’d try to figure it out, but I have to go shovel snow now. You’re on your own.
#1 by merle on December 27, 2010 - 6:18 pm
Thank you for sharing your Holiday Happenings with all of us. As you know, Roe, my Godson Philip, is also autistic (and 50 years old). He used to go home for all holidays from his group home in Willow Grove but his mom (my best friend) passed away in April so my Daughter Robin put up a tree, invited the usual guests, lots of presents, great food BUT, my sister in law, who’s always with us, was home with the flu….so, what did Philip repeat several times? “I really miss Sandy and George”. Sending love to all,
#2 by Larry Blumenthal on December 28, 2010 - 8:28 am
Thanks for sharing your thoughts, Merle. On the surface these guys can seem so distracted, but underneath is a rich depth of feeling and awareness. Happy holidays to you and your family.
#3 by Lydia on December 27, 2010 - 8:02 pm
Christmas with Clay is a mirror image of Christmas with Zach. Sleeping late and no enthusiasm to open gifts. Although painful in the past, just the norm now. Zach too gets excited witht he aniticipation of relatives coming, but goes up to his room after a short period. This year Zach was able to stay downstairs with everyone as long as we let him listen to his Ipod (headphones drown out the noise just in case someone coughs). Zach’s is happy to get gifts that go fast (a stim I am sure). This year he got a go kart.
Merry Christmas and Happy New Year – Larry, Roe, Ross and Clay.
Lydia, Jim and Zach
#4 by Larry Blumenthal on December 28, 2010 - 8:30 am
A go kart. That is pretty cool. Thanks for sharing, Lydia. Happy holidays to you and your family, as well.
#5 by autismmommytherapist on December 27, 2010 - 8:17 pm
I’m caught between being sad he felt that way, and blown away at how well he conveyed his feelings. Not sure about a Christmas message, but maybe that’s the gift… Congrats on the two hours, we’ve worked up from our 17 minutes to 90, and were pretty proud of that!
#6 by Larry Blumenthal on December 28, 2010 - 8:38 am
Thanks so much for sharing your thoughts. For me, the message is about appreciating family, no matter how hard it might be to get together. It also is about remembering the depth of feeling so many kids with autism have, even though you don’t always see it on the surface. Happy holidays to you and your family.