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.


Varda said...

What a lovely post thanks, for sharing that.

As you may know, I, too, am squeezed between elder care and caring for special needs children, and when something breaks down in the system, truly it is a disaster.

I am so happy for you it was "only a test" and that you had the strength of a community that was there for you, ready to swoop in to provide back-up. I hope you don't need to call in the troops again anytime soon, but am so glad that you now know they are there when you need them.

Wishing you all Warm and Happy Holidays!

Robin said...

I know I am far away but if there is ever anything I can do from here please don't hesitate to call.
I am glad that your mom is doing well and that you all had a merry Christmas in the end.
Wishing you guys a very easy and happy New Year!

Anonymous said...

This is a beautiful story. I'm so glad to hear it worked out this way, with the added bonus of confirming that your safety net is in good working order.

It's also a great reminder that asking for help is something we'd all be smart to practice before the stakes get high.

Judy Jeute said...

What a wonderful reminder to us all! I cried when I read about Bud's teachers coincidentally having parents with A's as well. I guess that is what helped prepare them to be such wonderful people and villagers. I recently wrote a post about this as well, and have NT kids, and no parents that need help (yet, blessedly); I can only imagine how big your village needs to be! Thank goodness you are such a wonderful friend to them that they crowd around to be in place when you need them.

Alysia - Try Defying Gravity said...

a beautiful story of family and friendship. It's an important reminder for us all that we need to have backup plans A, B and C. I think as mothers sometimes we think we'll be able to take care of it all.

It was also a clear illustration of how cared for you are by your friends and family. the fact that the people around you were willing to step up to help w/o hesitation says a lot about you and your family.
Wishing you a happy healthy holiday season.

jess said...

Oh man, this post hits home. I wish I had something coherent to say. I don't. But with tears streaming down my cheeks I say thank you. Thank you for the poignant reminder. Leaning in, yes.

So glad all is well with your mom.

David said...

What a nice post Mom. It's very uplifting to see people rise to such challenges as you do. :)

As a member of your extended community and a big fan of your blog here, allow me to offer my geek assistance should you and your family ever need it, emergent or not.

Happy New Year.

gb said...

Blessings? We all need them. You are one of mine.

Anonymous said...

Thanks for always picking up the phone when I call! I wouldnt have made it though the last year and half without your help and support.You make it easy for me to ask for help! I hope you know you can call on me anytime as well.

gb said...

We are family.
All of us.

gail said...

So happy your mom is well.

How do people without a support system survive?

kim mccafferty said...

Wonderful post, and a great reminder that it's okay to ask for help even if we don't know exactly what we need at the moment. So glad your mom was okay, and that you have such an extended village to call upon.

Stephanie said...

I'm glad it worked out! It's good to know who you can count on, and to know that we all need someone to count on.

Jaxmom said...

What a lovely post! As the mother of a 10 year old on the autism spectrum (PDD-NOS), who also cares for my 87 year old mother (whose body is still very healthy but whose mind grows more forgetful every day), I can certainly relate to your situation! We all need to remember that in accepting help, we're affording another person the opportunity to give it--something we'd certainly do for a loved one if the circumstances were reversed. It does take a village! Thanks so much for sharing!

Niksmom said...

So glad it was only a test of your support system and that your mom is ok!

This post is a searing reminder of what I don't have in my "real" (daily, face-to-face) life and that I need to do something to build that network.

Wishing you, Bud and your whole family a very happy new year filled with good health and good people.

kristina said...

Hope your mother is better.

And that the Christmas tree was duly decorated and your dad's gluten-free meals ready for him.

And thanks for yet another post that has so much in it, I am going to go read it again.

mommy~dearest said...

Very true! Here's to a happy, healthy New Year.

Club 166 said...

Glad to hear that your mom's OK.

Happy New Year to you and Bud!


**my verification word is "auties". How cool!

Anonymous said...

Hooray for the village. And hooray for the ability to say "yes, thank you." As someone in a helping profession also, I can completely relate. I thought your post was just wonderful, thank you for sharing :) Hope you & your family are all well & happy this New Year!

Brenda Rothman (Mama Be Good) said...

I love that you wrote about this. This is beautiful. You have taught me how to say yes when we're under the most stress. And such a graceful way, too. Hope your mom is well recovered. ((hugs))

Lapin d'Indigo said...

As a fellow member of the AA league, I am happy that your mother is doing well, and that you found out that your bench is so deep. When push comes to shove, I am constantly amazed at, despite everything, how much good is out there.