Amy Grant talks (and sings) about Caring for Aging Parents on Katie Couric, and I was there...

What do Katie Couric, Amy Grant and I all have in common?

We have all gone through - and are still in the middle of - caring for aging parents through their physical and mental declines.

And how do I know this?

Katie and me

I was invited to the taping of Katie's show on Taking Care of Aging Parents, which airs today (at 3 pm here in NYC, check local listing for elsewhere), as a special audience blogger/tweeter. It's a lovely way Katie and her show are actively engaging bloggers and the social-media-connected generation.

I was also asked to contribute a post for the Katie show blog, and you can find it here: Caring For My Aging Parents

I highly recommend you watch this show if you have any interest in this topic, or even if you don't but you have still living parents or other older people in your life you may end up caring for some day. And even though it may SEEM years away still, you never know what fresh disaster is just around the corner (ever the eternal optimist, I know) to make that hazy "someday" instantly morph into today.

It is intense, exhausting, deeply rewarding, filled with love and sorrow, and something nobody thinks about - or wants to think about - until it is thrust upon them. It's better to be prepared. Don't turn away just because it's unpleasant to think about. Watch and start to plan now!

Also Amy Grant gifted us with a live performance - the world premiere of a new song that she wrote for her parents, her mother now passed on, her father deep in the throws of a grave dementia.

Amy Grant performing on Katie

Blogging the show was a great experience. I got to hang out in the green room beforehand, watch the show from the front row, and comment on it throughout via my twitter stream. Katie sat next to us bloggers during Amy's moving song.

Me at Katie

It was also fun to be back on a soundstage, reminding me of my former life in film & TV production. Sigh. And then it was back to "real life" (taking care of kids and mom).

Talismans and Distractions

A pendant from my friend, hanging from Mom's beads

It takes a lot to get though a day in the hospital with a loved one.

And thus, even though I am, for the most part, a rational being, not terribly prone to magical thinking, I am employing a lot of talismans. And distractions.

Talismans for comfort, and to indulge that small part of me who still clings to magic. Because... why not? What could it hurt?

And distractions because I would like to retrain to my last shreds of sanity. And those dreadful few days in the ICU, sitting in the preternaturally noisy hush, watching a machine breathe for my mom? Were whatever is the polar opposite of awesome. Hence the books, magazines, snacks, telephone, and screens large and small.

The talismans? Jewelry, most of it given to me by dear friends, that I can see, touch; feel giving me strength as I sit. And wait.

First a bracelet of faceted stones from my friend Rachel who lost her wonderful parents way too soon. As their only child capable of caring for them (her brother is autistic), she knows more than any other close friend, what it means to be a caretaking daughter.

Then a wonderful necklace made up from a "Super Mom" pendant my dear Empress Alexandra gave me last year when she was my roommate at BlogHer, strung on beads that were once my mom's. Purple beads, our favorite color.

Finally another bracelet: sparkly plum-colored glass beads, with a flattened silvery bean in the middle, a perfect worry stone conveniently encircling on my wrist. This is one of sixteen nearly identical bracelets.

I gave one to each of my fellow Listen to Your Mother NYC cast members just before we began our show. It reminds me of my non-caregiver self, she who moves through the larger world and will do so again, one day soon.

May they work their magic and keep my mother (and me) safe.

Holding Mom's hand again

As for the much needed distractions: I played a lot of games on my iPhone. A million thanks to my Scramble and Words-With-Friends friends.

I brought with me about the only two books I could tolerate in this situation: Let's Pretend This Never Happened by Jenny Lawson (The Bloggess) and Rosanne Cash's Composed; both memoirs, by the way, as that's how I roll these days. And also? I have meaningful connections to each of these authors, and somehow that made me want their words with me, let me feel like I was sitting with a friend, not a stranger, as I was reading them (or in the case of Rosanne, re-reading).

And hearing their words in THEIR voices inside my head as I read, instead of my own, also makes me feel less alone.

Jenny's book is with me because it is hysterically funny and also raw and real at the same time. And I think reading a book by someone more neurotic and over-the-top than me makes me feel calm and together in comparison. I know Jenny, have hung out with her at blog conferences (she's in that funny category of fond acquaintances who feel like close friends to me because I am privy to their innermost thoughts via reading their blogs) and have given and received numerous hugs from her.

She is a generous and compassionate woman, just the right person to sit with me by my mother's bedside. (She also gave my blog its first big boost by linking to my From Autist to Artist" post in one of her Sunday wrap-ups two years ago, and for that I am forever grateful.)

As to my connection with Rosanne, it is more tangential and tenuous, but I still feel it. Besides the fact that my sort-of-step brother (it's complicated) has toured with her band at times, and that I am friendly with a couple of friends of hers, we also met face to face once. Her book was actually released ON my 50th birthday and I chose to go to a reading/performance/signing that night. 

As someone who has gone through the illnesses and the loss of so many of her loved ones, and written about it so soulfully and eloquently, I have found much comfort in reading her book yet again this week.

And Jenny and Rosanne are both Twitter friends. Which is the perfect lead in to my final distraction, which is also so much more than a distraction, is actually a tremendous support and source of strength. And that is social media.

Through Twitter and Facebook (and this blog) I have never felt alone on this journey with my mom, not even for a moment, not even in those darkest hours when her strength was at a nadir, and I thought I might lose her.

Finally, if you're here for an actual update on Mom's actual condition: As of today, Thursday, she is much improved. My brother (her step-son) Bruce came in yesterday to lend support, and he took the evening shift, so I could pick up my kids, have a family dinner. 

Yesterday afternoon, Mom moved from ICU to a step-down unit, and, if all continues to go according to plan, will be in a regular "medicine bed" tomorrow and then on to rehab, working on walking again. Because she still has that broken hip, remember?

So there will be a lot more hospital days in her and my future. But with the right talismans and distractions  - and my wonderful community of friends and family, both physical and virtual - I will make it through.

SNSS takes a Holiday (meanwhile, I'm over at Hopeful Parents)

If you came here for a new Special Needs Sibling Saturdays guest post, I'm sorry to disappoint you.

First off, today is the 10th of the month, so I'm over at HP as usual with my post: Building Community One Tweet at a Time

Over there, I'm talking about...  you guessed it, the wonderful #YouMightBeAnAutismParentIf Twitter conversation that's been going on.

But also?

I am here to announce that the Special Needs Sibling Saturdays series is going to be on hiatus for just a little while, as the holiday season ramps up into gear.

It's going to be getting very busy and I want to spend time with my family. Plus people are going to get swamped and miss their deadlines to get posts to me. I know that - can see it coming - and want to avoid all the stress that entails. So I'm giving it a break for a bit.

Special Needs Sibling Saturdays will be back in early January (probably about the second week) and continue as a weekly series until I make a full year of it - through the month of March, that is. After that I'll re-evaluate to see if there's enough steam left to continue as is.

The series will never go away completely, this is too important a topic to me for that. Also there is much to the hosting that I enjoy, but it is also an (unpaid) weekly obligation that sometimes gets to me, so I'm not going to continue it indefinitely.  At some point it will likely become a biweekly (fortnightly to my Anglo friends) or monthly feature, as seems fitting.

So while it's on break I will be contacting potential and confirmed guests and scheduling out the SNSS posts for the new year. If you think you've got one in you, and I haven't contacted you yet - or if I have made initial contact but haven't followed up (ADD brain strikes again, many apologies) - please let me know! You can leave a comment here, send me a tweet or an email.

Just don't send your note by carrier pigeon or owl (yes, that's a geeky Harry Potter reference), as Cocoa the cat thinks they're delicious.

Also, if you have previously committed to write a SNSS post but have somehow not been able to come through yet (no name calling or finger pointing here, you folks KNOW who you are) this is the perfect time to cough one up and send it to me! All will be forgiven. The hounds will be called off.

(Actually you are already forgiven, because you are a SN parent and how could I *not* understand how life gets, and bloggy obligations are just NOT at the top of the priority list. Believe me, I understand all too well. It's just that this was too good an opportunity to mess with y'all to pass up.)

So, all that said, please go visit me over at Hopeful Parents, today. And if think you might not have seen all of the many wonderful SNSS guest posts that have appeared here for the past 9 months?

Go to the SNSS page now, see what you missed, and catch up on your reading:

Click me to see all the SNSS posts

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...and that's why I'm a Twit

(as in some fool who likes to tweet on Twitter, not an upper-crust British nitwit a la Monty Python.)

Hello, my name is Varda and I am a Twitter addict.

OK, I've been cutting down some lately, as I have recognized that it can get in the way of, well, that (highly over-rated) "real life" stuff. When your son complains that you "Love your computer more than you love us!" you know it's time to scale back a wee bit.

A year and a half ago I didn't know even know what Twitter was. Well, I mean I'd heard of it, but hadn't given it much thought other than as that "wacky thing" some folks do.

Now I can't imagine how I wasted my time before Twitter. It's so efficient, so effective at sucking all the "spare time" out of my day.

But also, truth to tell, useful.

Sometimes I just want to shout into the cave and hear a voice back that is other than my own, echoing. Sometimes I have important things to say to the universe (well, to the approximately 1800 souls in it who follow me, that is), while other times I just want to share my momentary thoughts with at least the illusion that someone is listening.

Like today.

I was sitting in the car waiting for the clock to strike 11 so I could leave (following the arcane rules of the NYC Alternate Side Shuffle... if you live here -- and especially if you own and street-park a car - you understand; and if you don't, be glad you don't have to) my brain just bouncing around in the void.

So I sent out this tweet:

And got this back:

And that's it. Just what I needed. To know I'm not alone.

And then when I got home (car legal, good 'til Monday at 9:30), just checking in, I read this:

and decided to click on over to read her post. It was about aggravation vs. thankfulness and contained this poster:

A timely reminder if ever there was one, as I have been uber-cranky lately. Forgetting to feel grateful. Forgetting all that I am always hammering home to Ethan the complainer, reminding him how lucky he is.

I can hear my own voice yakking away at him, telling him: "The key to happiness is not how MUCH you have but how GRATEFUL you are for whatever you do have" in response to his whining for this or that toy he has seen advertised on TV and MUST HAVE or he will be miserable forever.

I remember when he was little, maybe four, and was being all fussy about his clothes, wanting to wear a very specific something that was dirty in the hamper, declaring every other possible item terrible, I just lost it with him. I was yelling about how spoiled he is, about how in so much of the world kids have only one or two sets of clothing that they own and THAT IS IT. And if they want them clean they have to wash them by hand, every day, maybe even in a river miles from home.

And he got a quivering lip and I thought "OK, maybe I'm laying it on a little thick" but he then said to me with so much compassion: "Oh, Mommy, that is just SO sad. Can I send them some of my clothes?"

And we hugged for a bit, and talked about what we could do to help those less fortunate than ourselves.

And that sweet memory of my son, and remembering to be grateful for all that I have in my life? Thanks to Twitter and the random moment I popped on to read.

That's one of the things I love about it, how it increases the serendipity quotient in my life.

Other things I love: That it is teaching me brevity, how to be more concise, I, who am so in love with words, who easily earns my reputation as "Queen of the run on sentence (with parenthetic clauses)". But Twitter? 140 characters, baby, or you're toast.

Also, I am by nature an eavesdropper, and Twitter was MADE for that, I can listen in on other people's conversations all day to my heart's content, no one the wiser.

I would like to call myself the Queen of Twitter, but really I'm not. I go through phases, I'm in and out. Sometimes I just read and lurk a lot. Mostly that's fun (see above paragraph) but other days I'm feeling down, vulnerable. And then I feel all left out, wonder why no one is @ing me. (Duh, dorkus, you have to jump into the conversation and @ others to be included, REMEMBER?)

The real Queen of Twitter right now (in my humble opinion) is, quite fittingly, my friend Alexandra aka The Empress who tweets as @GDRPempress and writes the blog Good Day, Regular People. She was on of my two wonderful BlogHer11 roommates, and it would be hard to find a lovelier, more gracious woman on all the planet, let alone the interwebs.

Any delightful or vital conversation going on - there she is! She re-tweets like crazy, offers tweets of support and encouragement constantly. Her stream looks like this, all day long: 

Also Alexandra is first on the spot with important messages and alerts. (And yes, it was she who clued me in to Anna See's tragic loss of her son last week.)

So if you're looking to pick up ONE new follow on Twitter - make it Alexandra. (After ME, of course. Do follow me, please! @Squashedmom, of course.)

So yes, when it's not leading me to fritter away my time, I can truly say that Twitter has embiggened my life (is TOO a word, coined on the Simpsons).

So that, ladies and gentlemen, is why I'm (proud to be) a Twit.

(And you can Tweet me, and we can talk all about it, or anything else you want to, in 140 character bursts.)


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Laughing beats the alternative

This morning I had coffee with a friend after we dropped our kids off at school.  I should have gone right home and done the 10,000 things on my un-done to-do list, but this had been one of those mornings.

Up too late followed by up too early.  My morning Twitter stream reflected this:

 

So, clearly, I needed the coffee and the friendship to get my morning turned around.

My friend, in turn, really needed to talk to someone about another friendship of hers which was hitting a rough patch. And, somehow, of all the people in her life, I am the one who has a direct yet separate connection to this other person, will understand where her frustrations are coming from, and also why she values this friend so deeply.  So we talked for a while, and strategized, and sighed big sighs.  Because this friendship stuff?  While wonderful?  Can also be really hard.

And then, this morning, I started to talk about Jacob and how he's doing.  And for some reason, this morning, something gathered momentum and came together in my brain that I had never let coalesce before, and I was crying and blurting out my fears for Jacob's future.

At this point, although things are far from certain, there is growing in me the gnawing fear that Jake will never be able to live completely independently, will always need some sort of care, a custodian to watch out for him for the rest of his life.  And that shit just tears me apart.

Because at ages 4, 5, 6?  The future is wide open.  We were still thinking we might find the magic hat trick that would rapidly pull Jacob together.   Not a "cure", not a miracle; we were under no illusions that Jake will suddenly fall off the autism spectrum and become "normal" (whatever THAT is).  But some kids I had known since Jake was little, who seemed much more messed up than he was then, have had these rapid turnarounds where they are now merely quirky and odd.  They are now kids who are socially "off" but still in the realm of regular.

They can go into regular classrooms with a bit of help, they are now like the kids we called "nerds" back in my day.  But they will clearly be able to navigate some sort of life for themselves as adults, with jobs (likely in the computer industry).  They will be part of the growing high-functioning Autism/Aspergers community; they will have their own place to fit in.

Jacob on the other hand?  At eight?  Is a lovely, loving boy, making slow, gradual, steady progress.  He is a boy who can talk, but not yet carry on a real conversation.   A boy who still prefers to meow, and growl; who struggles to find the right words.

Jacob is still so often and easily baffled by the world and the expectations of others in it.   And to learn and stay focused?  He needs a lot of support.  Someone right at his elbow keeping his attention on where it needs to be.  And that's not changing much.  And I don't know if it ever will.   I hope so, but I just don't know.

And I think in how few years he will be be a big boy, a teenager, an adult.  Blink, blink.  And I am afraid.  And I cried.

And then, because we so needed to, we laughed until we snorted our lattes out our noses.

I had pulled out my Droid and showed my friend the website I had found last night, that one that had my husband calling out from the other room wondering if I were all right or having an attack of some sort.

The website is called Damn You Auto Correct!  and it's a "reality" humor site, like Sh*t My Kids Ruined and Cake Wrecks.  In this case, people copy and send in texted conversations that have gone horribly wrong because the typing auto-correct feature on iPhones (and other devices like them) has made a baaad, baaad guess and changed an intended word or phrase into something... more interesting.

And often?  Rather obscene.  Or disgusting, or humiliating, or disturbing.

But always?  Utterly hilarious.

Latte snorting hilarious.  Hyena laugh hilarious.  Give yourself the hiccups hilarious.  OK, you get my point.

The funniest are (of course) the filthiest, and I'm not going to share those with you here, keeping some small semblance of decorum on this blog.  But I'm notifying you they are there, don't go there if you don't want to see that.  But if you do?  Please go and snort away.

Also?  Do not be drinking anything when you go to this site.  You have been warned.  I will NOT be held responsible for your messed up computer/smartphone/iPad/husband if you spit-take all over it/him.

Here are a few choice examples that had my friend and I sprawled across the table trying to compose ourselves and happily ignoring the questioning stares of the other coffee shop patrons as we brayed away and used up all our napkins wiping off the laughter tears:

Or this one:

I like the twist in this one:

OK, this is truly 8 year-old boy humor.  But also?  Funny.

And I thought it was bad when my phone turns "Ethan" into "Ethanol":

Here's one that's actually completely clean, yet surprisingly still funny:

But, finally, I think this one is truly my favorite:

See?  So the next time you are getting all scowly at life?  Go there and gleefully waste a few minutes. It will cheer you right up.  Especially if you're also having coffee with a good friend.

Hanging Ten

Yesterday I was a bit of a hot mess.  I wanted to write a new blog post, because, as you may have noticed, I have written nearly every day this month. Way more than I ever have.

Maybe I'm feeling inspired by all my friends doing the NaNoWriMo or the NaBloPoMo challenges (apologies to my civilian readers, that's real insider bloggity-bloggish stuff).  Or maybe I just have bucketloads of stuff to say and am giving up unimportant things this month, like sleep.

But yesterday?  I was just all unfocused and fuzzy, like my slippers, which I almost walked out the door in that morning.

And writing?  Takes focus.  Even if it's a dreamy focus like when I'm deep in the grief and go into a fugue-ish state and the words just flood out of me like water from a cracked jug.

But tweeting?  Reading (and commenting on) OTHER people's blogs?  Perfect for ADD-rific me some days.  Like yesterday, when all my writing mojo spilled out across the internet, splashed onto other people's blogs.  I was a commenting dervish.

And then there's Twitter.  If you tweet, you understand the appeal of the fairy dust.  And if you don't?  You (probably) think I'm a twit.  Well, you're both right.  Probably.

So (focus, please, here!), yesterday, when I sat down to write, I just didn't have it in me.  I thought: "Damn, I have no words left today, I dropped them all off at other people's houses."

But you know?  Maybe I can visit them tonight, and take a picture and show you (because I am a technical genius and know how to make my Mac do screen shots) and impress you with how smart/funny/cute/ranty and... commenty I was yesterday.

And at the sheer wonderfulness of this approach?  Besides not having to write anything really coherent tonight?  I get to introduce you to some more terrific blogs and bloggers.

And also?  I'm kind of new-ish to this blogging thing, haven't even had my "bloggaversary" yet. So I don't really know what the rules of this world are, and if I'm breaking any of them by doing this bit here.

But also?  I don't really care.  I'm following one of the operational rules of my old career in TV/film production: it is often easier to ask forgiveness than permission. 

So here is me yesterday, flying in from elsewhere, inspired by the wonderful funny, smart or heartbreaking words of others to add a few of my own.  Or in my case, more than a few.  Because, as you may have noticed, I tend to be "long-form" (that's not baggage, that's just the size of my suitcase)...

First off, lets mosey on over and take a look at my early morning Twitterstream:

And then, after joking about it, I nearly did just that by accident.  Clairvoyance?

Um, I was a bit tired yesterday morning.  But also?  Somehow giggly instead of grumpy.  Thank goodness, because I really hate having a three dwarf morning.

Yeah, I'm going to win a Pulitzer with my tweets.

Well, no.  But it does help to blow off steam and let me be kind and nice mom instead of bearish snappy mom.  And THAT is most definitely a good thing.

So after dropping off the offspring and spending a few hours in Jacob-life-management mode (wherein  I inventoried and re-ordered all my son's 10,000 medicines, vitamins and nutritional supplements from 5,000 different sources, and then poured out a week's worth of his 6 different types of a daily packets of them -- don't you just wish you had my life, now?) I allowed myself a little time to surf the interwebs, visiting old friends, discovering new wonders and dropping bits of myself off, my commenty calling cards, along the way.

Yes, I know, if that sentence were any longer it would need its own zip code.  I am working hard to earn my title "Queen of the Run-on-Sentence (with parenthetical clauses)".  How am I doing?

So, back to the matter at hand.   Picture me tiptoeing through the tulips in the garden of web... looking kind of like this:

That is an illustration from the amazing Allie Brosh's blog Hyperbole and a Half.  If you ever really NEED to laugh?  Like, if your life depended on it?   Go there.

OK, so on Kris's blog Pretty All True my response to her funny/painful/honest post "Call Me" was this:

One of the (many) amazing things about Kris is that she always replies to each and every comment, often inciting layers of dialogue.  She is the most interactive blogger I know. And sometimes the comments are ALMOST more wonderful than her wonderful posts.  And best of all?  She likes me, she really likes me.  Cyber-me that is. Which is just fine.

Then I went to visit Jess's blog, a diary of a mom, and read her moving post "The Donut Shop."  Jess is an Autism Mom blogger, and this post was about how hard it is to go out to eat with her family.  But really, it was about so much more, about all the dreams you have for your family and what happens when you add Autism into the blender and hit pulverize.  Her post brought up all kinds of feelings for me, and I left this mini-rant of a comment:

And yes, I need to work on my proof-reading. That should have been "struck" not "truck."

And finally?  Yesterday was Stimey's monthly day over on the Hopeful Parents site (where I post every 10th of the month).  Stimey (real name Jean) is my web-friend and yet another Autism Mom Blogger.  She was a DC Metro area member of the defunct (and just now resurrected) Silicon Valley Moms Group blog,  a sister site to the NYC Moms Blog site I wrote for last spring.  We actually met (yes, in the real world, with our meat puppet bodies) at the BlogHer10 conference in NYC this past summer, and in fact kept bumping into each other every 5 minutes to the point where it became a running joke: "Oh, you again! Am I stalking you or are you stalking me?"

Her home blog is Stimeyland (although you can find her words all OVER the inter-webs) and she is in every way terrific (smart/funny/really real).  Her post at Hopeful Parents, called My Son Knows He Has Autism, was about how she talks with her son Jack (and whole family) openly and positively about his different brain. I read her post (and you should, too) and then left my 2 cents:

Yes, I know there's a proofreading fail in this one too. Thanks for pointing that out.

And that, my friends, is that.  Retiring my surfboard for the night before I reach too far and wipe-out.  Gonna grab a yogurt smoothie.  Take off my web-suit and excavate the sand out of my...

Ahem

Good night all, good night.