Saturday, December 25, 2010

Just say "yes"

My mom and I are a team. We play in the Double-A league - Autism and Alzheimer's - my son's and my father's. Our life is a series of in-depth strategy sessions, finely-choreographed hand-offs, and reviews and critiques of the play-back tapes. Our game plans are constantly evolving as the needs and issues change - as one of our teammates seems to lose ground as rapidly as the other gains it. We marvel at the crossover between these two conditions - at how well the strategies we learned with autism can be adapted for use with Alzheimer's - and, together, we keep our team of four moving forward every day.

We are both, I think, always braced and ready to respond to an emergency involving either of "the boys." But, until very recently, I hadn't really considered what would happened if my mom got benched.

A couple of weeks ago, my mom had a health scare. For a short time, it was a big scare; it is less so now, and she is, thankfully, feeling good, doing well, and back in the game full-time. But for a couple of days, things felt much less certain.

In the first hours of my mom's health scare, after the scariest moments had passed, I watched the clock and tried to make a plan. My dad was at lunch with friends. Bud was at school. Neither knew that my mom was in the hospital. Each would be panicked by this sudden change in routine, by the lack of clarity surrounding the situation, and by the idea that my mom might not be well.

It occurred to me as I sat in the emergency room: It doesn't just take a village to raise a child. It takes a village to live a life. And I needed my village.

I took to the phone and made some tentative phone calls. I wasn't sure what I needed, but I wanted people to know that I might be calling again. I sought out people uniquely qualified to help with my most immediate needs - Mrs. H and Ms. Walker, Bud's former teachers - women who had seen Bud at his most challenging and his most charming, who would not panic at a dysregulated response from my boy (and - because the universe just seems to work this way - women who each have a parent with Alzheimer's).

Mrs. H sprang into action that night - arriving at my home just after I'd explained the situation to Bud and my dad, and staying late into the night while I returned to the hospital, where my mom had been admitted. Ms. Walker offered to be on call for the following day, to pick up Bud from school and to step in as needed, in whatever way might help.

I called my dad's friends - people I hardly know - and explained what was going on. Within twenty minutes, they'd rearranged their day, agreeing to pick up my dad the next morning and stay with him for as long as he needed their company - until I called with word on my mom.

The next day, with Bud and my dad in safe hands, I stopped at my office on my way back to the hospital, and my colleagues met me in the hallway.

"Do you need anything?"

"Yes, I do. I'm not sure what. I'll call you. Thank you."

"Can I come over and sit with your dad?"

"Yes, you can. I'm not sure when. I'll call you. Thank you."

"Can I do anything? Take your trash to the dump? Run to the pharmacy?"

Yes, you can. I'm not sure which. I'll call you. Thank you.

"Can I make you a meal?"

Yes, you can. I don't know what. But could you make it gluten-free, please, for my dad? Thank you.

Yes, thank you. Yes, thank you. Yes, thank you.

I didn't know if I needed a plan for hours, or days, or weeks. I started planning the weekend - the one which was clearly marked "Put Up Christmas Tree" on our calendar at home (something that seemed, at the time, like such a great way to keep Bud from obsessing about a Christmas tree, but which, I see now, was not my wisest move). I thought of which friends I could call to go and pick out a tree and set it up in my living room, so that no matter what else happened, Bud would be able to decorate on Saturday.

I thought about people whose presence would be most reassuring and comforting to my dad and to Bud.

I thought about who might be able to come and stay overnight for a couple of days.

I thought about things that people could do from long-distance: Research. Phone trees. Christmas shopping on Amazon.

Luckily, I never had to enact the plans. My mom was released the next day and has returned to good health. In retrospect, it all feels like an elaborate test of the emergency broadcast system (This is a test. This is only a test. If this had been an actual emergency...) What I discovered over that 36 hour period, though, is that there's one thing that the challenges in my life have taught me well - one lesson I have learned all the way to my toes: I know how to ask for help and I am quick to accept offers of help from others.

That wasn't always true for me. Like many people who find themselves in helping professions, I saw myself for a long time as a helper, and not as one who needed help. "Thank you," I'd say when people extended a hand. "Really, I appreciate it. But I'll be fine."

There came a time, though, when I knew I wasn't fine and I had to lean on the people around me - people who were eager to prop me up - people I would desperately want to prop up if the situation were reversed. So I leaned while they propped, and I survived. And through that experience, though I still look for opportunities to prop up others, I've learned to be comfortable with leaning, too.

Our recent experience was an important reminder for me. We are part of an extraordinary village of people who live both near and far. Some days we carry the water to the village for them, and some days we call for them to carry it. We need that relationship to survive. We have to remember to offer help, but we also have to remember to ask for it and to accept it.

My closest villagers - my team of four - just celebrated a Christmas full of As. Autism and Alzheimer's figured prominently, of course, with each made more pronounced by the break in routine that the holidays bring. But this year, they were joined by a whole lot of other As:





This holiday feels especially precious - as fragile as it is beautiful. It's hard to keep from wondering where we'll be at this time next year. But, wherever we are, I hope you'll be there, villagers. I'll be calling when I need you, and I hope you'll call when you need me, too. And when I offer to help, please - just start with "yes." You can fill in the blanks for me later.

Merry Christmas, friends. Thanks for being part of my village.