Step by Step

Saturdays, these days, my husband and I divide and conquer to bring the boys to their simultaneous basketball practices, and it was my turn for Jake.

Jacob truly loves basketball and the "Challenger" Special Needs division we finally found for him to play in last year, but was having a hard time sharing the ball after all those months of getting his own when we went to shoot baskets in the schoolyards.

Jake shoots wonderfully well, but the rules of the game, remembering to dribble, the need to pass, to pay attention to what other people on the court are doing... all these things continue to elude him. Autism, you know.

Jake kept chasing after the kids with the balls and yelling "STOP! That's mine!" Cringe.

I try not to interfere, to intervene too much when we're at basketball, try to give him his independence, to not be "that mom" kid-coaching from the sidelines. Yet the actual coaches seemed too busy to deal with this really-not-OK behavior and I couldn't let him terrorize the other kids, who were mostly younger and / or smaller than my giant son.

I kept popping out of my seat, running up to Jake to remind him that game is played with ONE ball and everybody shares it. Or yelling something to that effect when he was within earshot of my seat on the parent bench.

A couple of times he came over to me looking sad, and I kept sending him back into the game after a quick hug or a deep drink of water, reminding him to stay with the other kids wearing red vests and to keep his eyes on the ball.

Jake held it together during practice, drifting in and out of connection with the drills and game. But afterward as we were getting our coats on I saw the eyes blinking, the lip trembling, the sadness welling up; and on it came.

So I sat with my son, sobbing and wailing. I held my son, lost and losing it, his words coming out in a jumbled salad I could not make sense of.

And then in the middle of it all, he looked me in the eyes and asked the most amazing thing:

"What's happening to my brain, Mom?"

WHAT?

This level of self-awareness, recognizing that something in his brain is going haywire?

Monumental.

Unprecedented.

An incredible thing that I feared I would never see.

And then Jake was telling me that he was going to go home and cry at Cocoa the cat, and that then she would be mad at him, and he started to caterwaul anew.

I was trying to piece it together, realizing he might be thinking I was mad at him for having had a hard time in the game, and maybe even mad at him for crying, now.

I kept telling him to look in my eyes and see that I wasn't mad, that no one was mad at him, that I was proud of him for how hard he had tried playing basketball today, that it's fine to cry if he's sad, but that maybe his brain was stuck, and if he wanted to stop crying I would help him.

"Remember to breathe Jacob; slow breaths; in, out; one, two."

He gained his composure, only to lose it again. Again and again. We were going to be late for the movies.

And then one of the coaches came over and praised his shooting abilities, promised he would get more ball time next week.

And maybe my murmured words of love, of soothing, had washed over him enough that they were sinking in.

Or maybe his brain finally stopped misbehaving, let him move on

But suddenly it was OK again.

My boy smiled. Said: "I want to eat popcorn at the movies, Mom."

And so off we went.

And loved the movie as Jake loves all movies, although this movie, Hugo, was particularly lovable. (Paris in the 30's, a history of cinema, what's not to love?)

And when we stopped for a quick grocery shopping before coming home, Jake was remarkably present, helpful. He reminded me that we needed bananas, picked out a nice ripe-but-not-over-ripe bunch himself without any prompting at all.

Hungry for dinner, we hopped a cab home, and as we pulled up in front of our building he said: "Thank you driver, for taking us home!" to the cabbie, more polite by far than his twin ever is.

And so deep into the evening I pondered my son and his question.

A sign that more self-awareness will one day come.

That one day I may actually know my son Jacob's innermost thoughts, a cypher no longer.

Patience is now needed. For this can not be pulled from him, but rather, I must wait for it to blossom.

Wait for his next step, in this dance that he alone knows.

Let him be.

Enough as he is, and embracing what he will become.

Embracing what will come.

I am linking this post up to Be Enough Me Mondays at Just. Be. Enough.

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Today I am Just Being Enough

I'm not here, today.

Or rather, I'm here just for a moment, for long enough to tell you to go over there.

Where?

Here:

With a guest post: Letting Myself Think BIG over at the wonderful site Just. Be. Enough. whose tag line is:

And if you're here for the first time, coming to visit from over there...

Welcome! Nice to meet you. Please make yourself at home, poke around, stay awhile.

Don't know where to start? Want a little Squashed Mom road map? Click the links below for a nice assortment of my posts; a Bologna smorgasbord, if you will...

I'm an older mom, with nine year-old twin boys and an 89-year old mother in my care. I recently lost my 92 year old father and 93 year-old mother-in-law. I'm the squashed meat in the middle of the sandwich.

I write about birth and death, about being a mom and being a daughter.

I write about Autism in general, and my autistic son Jacob in particular.

I write about how adding in my and Ethan's ADD makes us a very neurodiverse family.

Sometimes I try to make you laugh.

And sometimes I try to make you cry. 

Sometimes I tell stories from my childhood, and my family history.

And I once let Ethan take over my blog and tell his own story.

I also write every month for Hopeful Parents.

And sometimes I link up on Mondays with Be. Enough. Me.

Also? Ethan and Jacob do not get along well, so I started a guest post series to talk about sibling relationships in families with special needs kids, called Special Needs Sibling Saturdays.

I hope you like what you've seen, and that you'll come back to visit soon.

Finally, thanks so much to Elena and the gang over at Just. Be. Enough. for inviting me to their place today. It's an honor.

Hope to see you back here tomorrow for Special Needs Sibling Saturdays.


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A Different Sort of Marathon

Yesterday, while top athletes who had traveled to my fair city from around the world ran 26.2 miles?

I… got out of BED!!!!

I… took off the PJs I had been wearing for 36 hours straight and GOT DRESSED!

I… FED my kids!

I… LEFT THE HOUSE to take Jacob to Hebrew School (the new pilot Special Ed inclusion program our synagogue started JUST FOR HIM – more on that soon) and got him there ON TIME! (Well, almost – only 3 minutes late, a world record.)

I may not be running in THE marathon, but I am running a sort of marathon in my life. The kind each and every special needs parent out there knows down to their bones. (And many plain old garden variety parents do, too.)

It’s the slogging through the day-in-and-day-out of caring for and about our special kids. It’s all that we do when we’re with them (talking and playing and supporting and scaffolding and watching and pushing them gently and coaching and coaching and coaching and holding our frustrations in check, smiling when we want to yell or sob; and, for some of us, taking care of their every physical need even though they have not been an infant for a decade or more; and, for some of us, wrapping our arms and legs around them tightly, enduring bruises and worse until the storm passes so they don't injure themselves or their siblings.)

And it's all that we do when we’re not with them (phone calls and meetings and research and more phone calls and strategizing and worrying and IEP meetings and phone calls to lawyers and more research and reports to read and reports to write and applications to fill out that make us weep as we list for the thousandth time all the milestones our kids missed and when we first noticed they were different and what we did about it.)

On a day like yesterday, when herculean feats are being celebrated all over the city, it's easy for me to slip into negative judgements of myself and my lack of lofty achievements.

I have been slipping in and out of a low level depression since last winter; some days, weeks, months closer to the light, others falling into shadow's embrace.

I need to go gentle with myself. To remember that getting out of bed and showering CAN be herculean in itself, when the tug to just disappear under the covers is strong and seductive.

My marathon is different, not less, than the one those glorious beings ran through the streets of New York yesterday.

And I need to run it every day.

And possibly for the rest of my life, if Jacob is never ready to launch.

And I am a different sort of champion.

And this can be enough.

For me, enough.

I am linking this post up to Be Enough Me Mondays over at the wonderful Just. Be. Enough.

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Being Enough Mother, Being Enough Daughter, Being Enough Me

I have felt for a while now that living my life is (more than) a little bit like being on the rack: pulled in opposing directions most all the time.

Sometimes I feel stretchy, like Gumby and that I can handle it; snap right back into shape once the tension lets up. Other days I feel more fragile, afraid parts of me are starting to break off, hoping that starfish-like I can regenerate new limbs as needed.

The forces in action are both ones that I have chosen and those that have been chosen for me.

I have an elderly, widowed mother, who grows more frail of body and mind with each passing month.

My children at nine are nearing an age when normally there would be a big push toward independence. But of course nothing in our lives is normal or typical, for I have one son on the autism spectrum and the other is high maintenance - very bright with a touch of ADD, which, just to spice things up I have realized I have, too.

While this is the pot that is nearly always simmering on my stove, what had brought it all to an over-boil lately is my mother's recent hospitalization that began with a day and night of fun and games in the emergency room.

There had been a bad fall. Bones were broken. Mistakes were made in the hospital that took her from bad to worse. Recovery is glacial. Although my mother is now out of the hospital and in a rehab unit, she needs me still, every day in every way.

As do my children.

One day, sitting by my mother's bedside in the hospital, waiting for her to awaken, confused, in yet another room, I started to write a blogpost that never got finished and has now, of course, lost its timeliness. I would like to share the beginning here though, as it embodies this state I find myself in...

5 Beds in 5 Days, and very little time in my own.

No, this is not THAT sort of post, the fun kind of post with this title I might have written had there been blogs and I been blogging in my 20's. Sorry, folks.

This is, instead, about my mother, still in the hospital, and me feeling hard pressed to be adequately useful to her and to my children these days. And my husband, poor man, I am all but completely useless to him right now; he is pretty much fending for himself until all this insanity dies down.

And then there is me.

Who?

Exactly.

So there it is in a nutshell. No matter what I do I cannot do all that needs doing - for my children, for my mother, for my husband and for myself.

I am just one person.

And so, at this crossroads I have a choice. I can tear myself up feeling inadequate, feeling like I am always less than I need to be, that I can't get anything right.

Or, I can recognize the impossibilities inherent to this situation and simply choose to forgive myself, decide that I do not have to be..

the perfect mother...

the perfect daughter...

the perfect wife (husband is doing spit take at the notion of this I'm sure).

There is no perfect me.

Except, of course, for me.

The me that I just am.

Enough.

Enough mother (my kids know that I love them)

Enough daughter (my mother looks at me with grateful, tear-shining eyes, every moment we are together)

Enough wife (well, I'm working on this one, my dear husband has gotten the short end of the me-stick for a while now)

Enough me.

Someday one of these pressures will ease up a bit.

Until then, I'm just going to have to make do with the rack.

(And how I wish I lived in a Monty-Pythonian universe and was being tortured instead with the soft cushions and the comfy chair.)

I am linking this post up to Be Enough Me Mondays over at the wonderful Just. Be. Enough.

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Choosing kindness

I find myself having to fight my over-critical mind these days. A lot.

With my kids.

With my husband.

And especially with myself.

This Sunday morning, things went a bit awry with Jacob's just-woken-up-and-kind-of-groggy first-thing-in-the-morning pee.

"I'm wet" he called out to me from the bathroom. As I helped him strip off his soggy PJs, I answered his request for "dry pajamas, please Mom" with the rejoinder that since he was getting up anyway, it was best to get dressed for the day, that he should go to the living room and I would bring his clothes in there.

"I want pajamas" he said. Again.

But I didn't listen. I got all practical on him, reminded him it wasn't HE who did the mountains of laundry every week, and I'd be bringing him soft shorts and a T-shirt which were just like pajamas, anyway.

I stepping into the living room, clothes in hand, to find tears streaming down my sweet boy's face. "I want pajamas, Mom" he wailed, "I want to play computer in pajamas."

Now, I knew some of this was autistic rigidity. That the recent tradition of my early-rising boy getting to play undisturbed on the computer for an hour or so while the rest of us lazy sods got an extra hour of sleep on Sunday mornings was somehow tied into wearing his pajamas in his mind -- while getting dressed was probably tied to being rushed through his morning breakfast and hustled downstairs to meet the school bus.

And like a good Autism Mom, I usually try to break up rigidities before they ossify. And just as I was about to get all hard-line with my boy I looked into his eyes, saw how much this meant to him, how much he didn't understand about why I wanted him in clothes.

And I just couldn't do it.

How important was this battle, anyway?

And isn't there something thoroughly delicious about lounging around in pajamas of a Sunday morning? And something about donning clothes that says one has to get down to business and be productive?

Jake understood this. He wanted a REAL Sunday morning. In pajamas.

I hugged him.

I dried his tears with the hem of my nightgown.

I brought him a clean set of PJs.

I set aside my critical mind, the one that said that was ANOTHER pair of pajamas I'd have to wash on Tuesday.

So what.

I chose kindness.

Today was a busy day full of to-ing and fro-ing and the thousand little errands that just suck all the time out of a day.

Jake had an early morning dental appointment, so I had to bring him with me to drop Ethan off at school, then take him on the subway all the way downtown to HIS school after the dentist.

I had groceries to buy, prescriptions to drop off, prescriptions to pick up. I had to pick up some cheap bathmats to replace the ones the cat keeps peeing on. Etc. Etc. Etc.

You know the kind of day.

In the middle of of it all, I am power-walking past the fancy-shmancy make-up store bluemercury on Broadway, when I suddenly feel compelled to stop in to shpritz myself with "Beach" (yes, the same perfume & store that inspired my Coppertone story).

I am, as usual, make-up less and slightly bedraggled (though, I proudly brag, freshly showered, whoo-hoo!) It is empty inside the store, a slow Monday, so the crew eyeing me up and down very politely ask if I would like a free "freshen up" with the make-up artist.

I'm about to decline, no time, no inclination, when I take a pause. My critical mind is telling me I have 997 errands left, it is telling me that even with all the make-up in the world I will still be overweight and 51 years old. That no one but the cat and my kids is going to see me in my lovely done-up state (the effects having long worn off by the time my husband gets home late from work).

But then I shove all that aside and I think: "Why not?"

I think: "Someone wants to give me something. I get to sit and be pampered for five, maybe ten minutes. Why the hell not?"

So I say "Yes."

"Yes" to the universe.

"Yes" to me.

And, of course, it turns out not just about how a little concealer, eye shadow and lip gloss can make me look like I actually get enough sleep.

It turns out that, if you listen, everybody has a story.

I sat and chatted with the make-up artist, a lovely man named Tony, while he did his magic.

And, me being me, I'm talking about my kids. And autism.

And wouldn't you know that Tony has a young cousin on the autism spectrum, a girl. And wouldn't you know that he has a brother with cerebral palsy. So he is a special needs sibling, himself.

And we talk about group homes and caretaking and independence. And elderly parents.

Which proves you can have a real conversation anywhere, even in this chancel of artifice.

And, yes, I buy a few small things - that concealer really was MAGIC. (You want to know? T. LeClerc. Tres French. Tres chic.)

And I walk out of there feeling, well, refreshed. Glad I took a moment for me, a moment to breathe, to connect with a stranger. Ready to take on errand number 214. 

And then, at the supermarket, when the guy in front of me was twenty cents shy of being able to pay for his groceries, I was happy to pull out a quarter, spot him the small change.

Finding the inner critic quieted.

Being kind to myself, and flowing that out into the world. 

I am linking this post up to Be Enough Me Mondays over at the wonderful Just.Be.Enough.


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