Hopeful, Kindred Parents

Families with autism (and other "invisible" special needs) are all around us, everywhere, everyday. I never used to notice them, specifically, pointedly, until we became them. And now I can't not see, not try to connect whenever possible. 

When my kids were little still, my eyes would always be drawn to the boy apart, walking the perimeter of the playground, hand bumping along each link of the chain link fence, on his toes, eyes cast down; to the girl tearing her dress off, rolling in and eating sand, screeching one octave higher and louder than any other kid in the playground but seeming deaf to her mothers words.... (continued)


Well, YESTERDAY was the 10th of the month again (and considering how much is going down right now in our lives, it's surprising that I'm only a single day late) so click on over to Hopeful Parents to read the rest of my post:

Kindred Spirits

Enjoy!

And come back here tomorrow for an update on my mother or some pictures of my cute kids or more talk about autism or... look a squirrel... oooh, something shiny... what was I saying? Oh, yea, maybe some chatter about my ADD... or whatever.

And thanks for all the support. It is heard, felt, and very, very much appreciated, even if I am not up to the task of replying personally to each and every comment.

To Heaven and Hell in a day

Ethan & Jake in the Mist Zone

Today was the last day of Jacob's two week break between the end of school-school and the beginning of camp-school (what we call summer school around here so it can feel more like what Ethan does which is capital "C" Camp).

I had planned on having it be a very magical "Mom and me" time for him with special trips and activities, but then things with MY Mom went South and well, I have barely given my poor boy the time of day. Our "big trips" have been to go visit my Mom, first in the hospital and then in the Long Island rehab center.

Jacob doesn't mind of course, he loves to see his Grandma, and in fact, talks about her all the time right now, asks to see pictures of her from our trips. "Let me see Grandma sick" he requests, scrolling through my iPhone for all the recent images of her.

Today though, being the last of the last, I was planning something special. That is until a very loud thunderstorm woke him up irreparably at 5:05 this morning. With Jake out of school and Ethan's camp sporting a 9:30 start time, that meant that he and therefore *I* was up a whopping THREE hours before expected.

And me, seriously under-slept at this point means seriously cranky and no fun at all.

I was seriously cranky and no fun at all.

So instead of a day at a museum and playground, Jake had a day in front of the TV at his drawing table. He got to watch a whole Batman the Animated Series DVD and go though about a quarter ream of paper. He was perfectly happy.

I felt like a crappy parent, but what else is new these days.

We took an exciting trip across town to pick up some medication samples from a doctor for a drug that otherwise costs upwards of $175 a month on our crappy insurance plan, and then exciting trip back to the West Side in time to pick Ethan up from Camp.

It was HOT in New York City today, one of those real deadly summer scorchers we all dread. After pick-up there was a resounding call for lemon ices from the camp canteen so we indulged.

And right near the canteen and shaded sitting area was the "mist zone" - a misty sprinkler you can run through (or stand in) to cool down considerably. It was running full blast today.

Now, in the past, Jacob has had considerable difficulty with getting wet when not in his bathing suit and in a swimming situation (when he is then perfectly happy to spend the day submerged) but that has been changing lately (thank goodness!) and I was curious to see what would happen here.

And indeed, Jacob was seriously interested in cooling down and joining in the fun. What was most amazing was that he observed that many of the other boys had taken off their shirts and he asked if he could take his off, too.

And if you know anything about autism, you'll know how stellar this was, and that I was over the moon. My boy looking to what the other kids are doing and deciding he wants to do things the same way. And then having a great time doing so. (Autism Mom swoon.)

One happy boy

Much fun was had. Ethan was even in a generous spirit towards his brother and played in the mist with him a bit, horsed around under the shade tent.

Yes, that is Jake under that towel

And then? And then? I made the rookie mistake of counting my happiness chickens before they'd hatched. Because walking from camp back to Broadway to catch the bus home, somewhere in the middle of 111th Street, Jacob asked to watch TV when we got home and I did not say "Absolutely yes." I told he we weren't going to talk about TV right now.

Ethan had lost screen time for the rest of the day (don't ask, a third ignoring of my admonishment against doing something) and I didn't want to promise Jake TV right away until I could figure out how to wrangle keeping it away from Ethan at the same time.

And then some combination of the extreme heat and the earliness of the rising and the fickle gods of autism deciding their free pass had expired kicked in. Jake heard a "no" where I had said a "maybe" and he just lost his shit in a way he hasn't for a while.

Screaming crying wailing and shouting, much stomping and rolling around on the sidewalk. Snot pouring out of his nose and mouth and no kleenex or napkin in sight. (Autism Mom sob.)

Ethan stood about a half building away, pretending he didn't know us. He has reached the "age of much embarrassment" about his family, and having an autistic brother in full-on melt-down mode is, I would think, about as top of that list as you can get.

And it went on and on and I realized the idea of him calming down completely before we moved on was moot, so I walked a sniveling and occasionally still sobbing and shouting boy to the corner and we all caught a cab home.

And then it was of course dinnertime, but Jake didn't want me to leave him alone in his bedroom where the meltdown was continuing apace to go to the kitchen and make it (because of course by this time the idea of any TV at all tonight was completely out of the question, and he was all sad about THAT now).

Ethan was hungry and tired and wanting my attention too, and so I had two clingy, wiped-out kids and no screens to mesmerize them into relative calm while I got our meal together.

Eventually dinner was assembled, eaten; baths and showers were taken, pajamas donned. Jake was tucked into bed as early as possible (but not without one more teary mini-melt right as we were singing him to sleep).

And then, Ethan cuddled into me as I read to him from a book I'd been wanting him to try for a while - the first book of Diane Duane's "Young Wizards" series - and I got him hooked. He yelled "Noooooo!" when I put the book down, and picked it up to read himself to sleep a few short minutes later.

After trundling him off to his bed, I sat on the sofa in a deep mom-stupor.

What a day.

And I hear there's another one coming up tomorrow.

Still Aware and Still Accepting

Today is the last day of April, now the official month of Autism Awareness and Autism Acceptance.

But of course, for those of us either with, or in intimate relationships with someone on the autism spectrum? It's not a month. It's a life.

A good life. But different.

I am still, more than ever, swamped by my duties as producer of the Listen to Your Mother Show, which is happening THIS upcoming Sunday. So I barely have time to type even another sentence about anything else, let alone the meaningful post about autism I should be writing today.

So even though yesterday's post was stream of consciousness (to the max) and I usually try to follow that with something well thought out and structured. Not possible to happen today. It's just another brain-dump people, with apologies.

Jacob has spring fever or spring mania or something and is bouncy and happy but also bouncy and LOUD, with his all-the-time talking at a new high. It's probably time for a visit to the psycho-pharmacologist for adjustments, and that is time and money I don't have. (Putting that call on my already floor-length to-do list for tomorrow.)

Listen to Your Mother is going to be amazing and our rehearsal yesterday truly inspiring. But it has definitely taken a toll on my family, with Ethan once again declaring that "You love your computer more than your kids, your computer is more important than ME." Sigh. I hope some day he'll understand.

Yesterday I actually said to him "I am more than just your mother, you know." And I kinda, sorta meant it.

I have to assume some of Jacob's over-the-top-ness is his needing more from me than I have been giving lately. He wants to play, to talk, to show me everything he is doing, which is truly, truly wonderful, but the timing couldn't have been worse.

So I am juggling three full time jobs - LTYM, Special Needs Mom, Elder Caregiver - and well, it ain't pretty.

There is an important conversation going on right now, that you should be reading if you care about autism. It's over here:

It's an answer to someone finding their blog using the search words "I wish I didn't have Asperger's." They want everyone typing those words into a search engine to find THIS site - and hear words of positivity and encouragement.

How utterly awesome. I wish I could have participated, but Asperger's is not the flavor of autism I have any real intimacy with, Jacob being of a different stripe altogether. 

But it's wonderful stuff, a lot of great posts by a lot of my autism-mom friends written and linked up there. You should go and read!

And that's really all I have time for today. Almost not a post, but better than nothing. (At least I'm sending you somewhere full of the wonderful.)

Now I have to go do another hour or three worth of work on Listen to your mother, and then plan the kids' weekend.  Do some paperwork for my mother.

And sleep, oh, yeah that "sleep" stuff. I think I vaguely remember what that feels like.

Building Community One Tweet at a Time

Note: In Honor of Autism Awareness/Acceptance Month I have been bringing some of my posts from the group Hopeful Parents site (where I post monthly on the 10th) back home to my blog. This post originally appeared there, in December 2011, and I am happy to report that the hashtag community phenomenon is still going strong.

If you’re on Twitter, and maybe even if you’re not (say, if you read Stimey's wonderful article) you may have heard of a hashtag topic marker that has been making the rounds for the past few weeks, even spending some time trending (on days when celebrity gossip yields few juicy items I presume).

It is this one: #YouMightBeAnAutismParentIf…  and it has been garnering some amazing responses.

It started as a private joke between two autism-mom bloggers who are also twitter friends: Jenny (@manyhatsmommyMI) and Elise (@RaisingASDKids), a take off on Jeff Foxworthy's "You might be a redneck if..." humor.

And then, as brilliant ideas often do, it spread like wildfire. People in the autism community noticed, chimed in (what Twitter was made for) because if there’s one thing we autism parents need on a daily basis, it’s a good laugh.

And while some of the tweets were funny in a side splitting way, others were funny with a wince; some were heart touching, yet others a call for help and support.

Here is a small sampling below:

@Stimey: #youmightbeanautismparentif you consider your kid's epic spinning session in a fast food restaurant to be an exercise in autism awareness.

@diaryofamom: #YouMightBeAnAutismParentIf you've discovered that 'family' need not be defined by blood.

@littlebitquirk: #YouMightBeAnAutismParentIf you are filling out forms and your 7 year old points out the mistakes you're making. And she's right!

@LeeAnne_K_Owens: #YouMightBeAnAutismParentIf you carry fidgets, gum & pec cards instead of lipstick and nail files in your purse.

@jillsmo:  #YouMightBeAnAutismParentIf trying to get any information out of your child is practically your full time job.

@myautisticson: #youmightbeanautismparentif you have learned to love your child for who they are, rather than who they should be. Best lesson ever!

I caught wind of all this about a week after it had started, when I saw a #youmightbeanautismparentif tweet from a friend and thought YES! And looked in to see what this hashtag was all about.

I added this to the conversation:
@squashedmom: #youmightbeanautismparentif you think that neurotypicality is HIGHLY overrated.

What I found was a community gathering itself again, in a marvelous way. Some people were even joining Twitter just to be a part of the conversation. Jess from a diary of a mom tweeted:

@diaryofamom:  #YouMightBeAnAutismParentIf you barely glance at Twitter outside this hash tag cause a) you're out of time and b) all the cool kids are here. 

It made me think about how important community and support are when you’re a special needs parent. I am well aware that we are the lucky ones, we who became parents in this age of awareness and internet connectivity; how even if you live in an isolated rural area, you can now easily find others who really “get it,” who can answer questions, laugh and cry with you.

I think about how hard it was to be a special needs parent in the age when we were told our kids were hopeless, to just shut them away and forget about them, or even worse, that it was OUR fault they were that way.

I can only imagine how hard it must have been when it was considered a shameful secret to have children that weren’t "perfect," and to support and believe in your special needs child was a radical act; and you were unlikely to know anyone at all in the same boat.

I am grateful to those brave pioneers who have come before me, and so thankful to be in the midst of the many amazing, supportive communities I have found both in my city and in the world via the internet.

So every day I check out what’s new in the twitter stream gathered at #YouMightBeAnAutismParentIf, grateful that every day brings me new friends who have found yet another place to share the joys and pains of special needs parenthood.

Come join the conversation on Twitter. You can find me at @Squashedmom. Usually adding my two cents daily, even if it’s just...

@squashedmom: #YouMightBeAnAutismParentIf you are just too damn tired to think of anything witty tonight, but still need to connect to this community.

My 1 in 88

Jacob, March 2012

Today is World Autism Awareness Day and April is Autism Awareness Month. A big deal in the autism parenting community.

I am, as is usual these days, a busier than busy bee, slammed to the wall with things that MUST BE DONE. And a long school vacation is looming later this week.

But I could not let today pass silently, without notice on my blog. It's just too important.

Last year I wrote a pretty cool post about my son, Jacob: Every day is Autism Awareness Day 'round these parts and everything I said in there still stands.

Jake is now one year older, evolved and evolving; his conversational skills and artistic talents just bursting forth, more and more amazingly every day.

And he is still, and will likely always be, on the autism spectrum. A unique boy with a unique brain; a singular perspective on the world, which, thankfully, usually delights him.

I love Jacob with every fiber of my being.

But I hate that he struggles so mightily with language, with expressing himself, and sometimes with just simply understanding what people are saying to him. I see the efforts in his eyes; sometimes I swear I can watch his brain attempting to process. And then I see the pain when it just doesn't compute, and he switches off.

I hate that his relationship with his twin brother, Ethan, is so difficult and fractious. I know that this too will evolve, but it has been a thorn in my side for so long now, it is hard to imagine anything other than the state of fraternal siege we live in.

I worry about his future in so many ways. I want him to have the biggest, fullest, happiest, most independent life possible. I want him to always be surrounded by love.

But I know how harsh and cruel the world can be for those who are noticeably different.

And as much as I am alarmed by the statistics that have recently come out, how autism is on the rise as a worldwide phenomenon and is just increasing and increasing annually with little end in sight?

I am also weirdly comforted by knowing that Jacob will not be alone. That he will be be coming of age as an adult into a world increasing filling up with others like him, and the world will HAVE to change - and will actively BE changed by the higher functioning of his brethren - to accommodate Jake and his people.

1 in 88 is a number, a statistic.

But my Jacob is not a number.

He is a person.

A boy.

My boy.

This is the face of autism.

To me.

Jacob, March 2012

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.


Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

Hopeful about my fledgling

I know it's Saturday, but there is no Special Needs Sibling Saturdays today. That's because it's the 10th of the month, so I'm over at

today, talking about my autistic son Jacob's experience at sleep-away camp. Actually, since he really hasn't told me anything about it, I'm talking more about MY process and experience in sending him there.

So come read me over at Hopeful Parents today as I contemplate my little Fledgling.

And if you're disappointed about not finding

today, maybe you missed some of the last few posts that came out in late summer when everyone was distracted, immersed in end of vacation and back to school madness.

Did you read all of these?:

When a Brother's Love Hurts

 by Gina of Special Happens

It’s Just Not Fair

 by Shell of Things I Can't Say

How Will They Know?

 by Caryn Haluska of Living with Logan

They are wonderful and should have more eyeballs. And you'll find SNSS back here again next Saturday with fresh tales of special needs siblings.

SNSS: Sisters

Our lovely guest today is a woman who needs no introduction (but, of course, I will be providing one anyway) for it is none other than Jess of a Diary of a Mom. Jess has been blogging about autism longer than many of us, and, from the very beginning, she has been an amazing connector, a community builder, generous, reaching out to all. 

In 2009 Jess wrote, Welcome to the Club, a letter to help guide and ease the fears of parents whose children have been newly diagnosed on the autism spectrum. If you know anyone in this situation, please send them to this important post.

Her most recent efforts? The "light it up blue" autism awareness campaign whose letter to President Obama got her an invite to The White House for their Autism Awareness Month community event, an extraordinary experience which she then (again, generously) shared with everyone via her blog. (You can read about this here, in parts one, two, three, four, five, six, and seven.)

On the personal front, Jess is a mother to two daughters. Her youngest, Brooke, is on the autism spectrum; Brooke's older sister, Katie, is not. Katie is incredibly loving towards and helpful with her sister, and theirs is a beautiful story.

Jess is exquisitely sensitive to the needs of her children, to a depth rarely seen. And to combine that exquisite sensitivity with such powerful, moving, beautiful writing; and add in her strength of will, her community-building character? Is the reason why Jess and her blog are beloved and read by so many.

It is also the reason that while every other SNSS post so far has been original to this series, this one is not. Jess so wanted to participate in this series, as the relationship between her daughters is very important to her, but she just had too many commitments; it was impossible to add yet another plate to the many she is keeping spinning right now. So Jess asked if it would be OK to use a previous post of hers instead, as she has written often on this topic, near and dear to her heart. 

I felt that Jess and her place in our community was too important not to include here, so I have chosen this beautiful post about the relationship between her daughters (originally published in April, as "what she needed") to share with you today for Special Needs Sibling Saturdays.

I am sure many of you reading this already know and read Jess, but for those who don't you are now in for a special treat...

 @@@@@@@ 

  
Sisters - by Jess

She showed me the picture covertly so that Brooke wouldn’t see it.

“Look, Mama, I drew Brooke as Rapunzel in the tower and that’s me, climbing up her long hair to come save her! Don’t you think she’ll love it?”

Katie had been working on the picture for nearly half an hour before she finally decided that it was done. She presented it to Brooke with a flourish.

“Look, Brooke,” she said, beaming. “I made this just for you.”

Brooke took the paper from her and without so much as a glance handed it to me. “I don’t want it,” she said. “Sorry.”

Brooke and I had a chat. Ultimately, the best we could do was a parroted, “Thank you, Katie. That was very nice of you.”

Katie was crushed.

Later that day, Katie and our sitter, Julie had a special outing to the mall. For her birthday, Julie had gotten her a gift card to her favorite shop and had promised that they would hit the mall together to do some shopping. Katie couldn’t wait.

She’s been begging for a trip to the mall alone with a friend. (Not quite there yet, kiddo.) So the half-step toward independence meant the world to her. She had packed up her gift card and tucked her very own money into the wallet in her very grown-up purse.

They’d spent hours at the mall.

She came home carrying a shopping bag, flush with excitement. She pulled me in close for a secret. “Mama,” she said. “I got Brooke the best present EVER! She’s going to LOVE it! You know how she keeps saying she wants earrings just like me but we know that wouldn’t really work cause she’d try to pull them out cause they’d hurt? Well, I got her MAGNETIC earrings! Isn’t that the BEST? I’m sooooo excited!!! OK, shhhhh! Don’t tell her. I can’t wait to see how happy she is when she sees them.”

She reached into her shopping bag and pulled out a small, hot pink gift bag. She’d even thought to get a gift bag in her sister’s favorite color. “Brooke!” she yelled. “I got you a present at the mall!”

Her sister looked up from her drawing.

“You did?”

“I did. Want to see what I got you?”

Katie was beside herself. She couldn’t wait to see her sister’s reaction.

Brooke pulled the earrings out of the bag, set them on the table and went back to her drawing. “I don’t want them,” she said. “Sorry.”

Katie tried to explain. Perhaps she didn’t know what they were. Maybe she just didn’t understand. “Brooke, you can be just like Katie. See, they’re earrings, like mine. Look, Brooke, this is what you do with them ..”

Brooke let out a sharp shriek, then yelled, “I DON’T WANT THEM. SORRY!”

The dam broke. Katie couldn’t take it anymore. I talked to Brooke briefly. Said the same things I’d said earlier. Told her we’d talk about it again later.

Katie and I walked together into the kitchen, carrying the cast-off bag. I peeked inside. There were two other pairs of earrings in the bag that Brooke hadn’t even seen. I turned them over – $5.95 each. On her big trip to the mall, my girl had spent eighteen dollars of her OWN money on something she thought her sister would love. To no avail. Eighteen dollars.

I held my girl as she let it all out, the words tumbling over each other as she sobbed. “I just wish that there was a shot or a pill or something, Mama. Something, anything that Brooke could take that would make her autism just go away. I’m just so tired of it. I just wish I had a typical sister. I’ve just been trying so hard. I just want to show her that I love her but nothing’s working. Nothing.”

I said the right things. I did. I told her that she is the best sister that I ever could have imagined. I told her that she doesn’t always have to be, I told her that Brooke knows how much she loves her – that it would be impossible for her not to. I told her that she doesn’t always have the ability to show that. And above all, I told her that I know how much that hurts.

I told her that I understood. That from the bottom of my heart, I understood. I told her that Brooke might very likely come back to the earrings later. It had been a long day and she just might not be able to handle something new. But I knew that wasn’t the point anymore. When there was nothing more to say, I held her and let her cry.

Last night, after presenting the Autism Awareness mural to the mayor, we went out to dinner at a local mall. During dinner, Brooke needed a walk. “Ooh, Mama. May I take her, please?” Katie begged, just like she always does. “I promise I’ll be responsible!”

We’d never agreed before, but the mall was quiet and it seemed like a good opportunity for a first run. Brooke resisted. “No, Mama would.”

With some cajoling, she agreed to walk with her sister.

We gave them strict parameters and then watched them walk away. Two minutes in, Luau said, “You going or me?” I got up and headed in the same direction.

By the time I reached them, they were headed back toward me, walking arm in arm. Periodically, Brooke would spin out, then come back and re-attach herself to her sister. Each and every time she came back, Katie’s arms were open.

Brooke stopped walking in front of the entrance to a shop. I wondered if she was going to go in. Instead, she leaned into her sister and hugged Katie for all she was worth. Katie hugged her back, grinning from ear to ear. I felt like a voyeur as I feverishly snapped a picture with my phone.

They began to walk again, slowly, lazily. Katie kissed her sister’s head and said, “Thanks, Brooke, I needed that.”

And her Mama thought, “Me too, baby. Me too.”

 @@@@@@@  

As you can see from what have just read, Jess is an "Autism Mom" extraordinaire.  I do not say this lightly: I have never yet met a parent more aware of exactly who each of her children are, and what they specifically need as Jess. She is an inspiration and a role model for me, truly. 

And now? You really must go back to Jess's blog, a Diary of a Mom, and read more. She doesn't have a "best of" page, but that's OK because you can click on any month of her archives and just start reading and you will be astounded. But let me point you to a few specific posts, anyway: 

For more about the relationship between her girls, these posts, from last October's "Spotlight on Siblings" week are wonderful: this pair about another sibling reaching out to Katie, big sister as little sister and little sister becomes big sister, are extraordinary. Also this one, and this one are truly touching.

And then, because telling her own family's story is not enough, here is a great post about how to help YOUR children: what siblings would like parents and service providers to know.

Whatever she is writing about, Jess so honestly and beautifully shares her love, her fears, her joys and her heartbreaks. Go, read! (And have a box of Kleenex handy, you'll need it.)

And of course, Jess is yet another SNSS guest who can also be found posting at Hopeful Parents. Her day is the 17th of every month.   

Finally, you can find and follow her on Twitter and "like" her on her Facebook page, where she is, of course, building yet another support community. 


Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

Thoughts on my son's getting older and getting stranger

An odd, tough twist on a familiar saying keeps running through my mind: "The older they get, the further they fall."

And I know I'm thinking about Jake, and how much distance is growing between he and his twin, as Ethan sprints ahead into sophistication, maturity, leaving his brother in the dust.

@@@@@@@

Having a toddler on the autism spectrum can be very frustrating.

However wild your other children are, they can be so much wilder. Or, conversely, uncomfortably tame, absent, self-contained to the point of disappearance.

They can be fearful, unable to explore their environment due to anxiety and sensory issues. Or, like my son, so busy exploring, feeding their sensory hunger that thoughts of safety are, well, I was going to say last on the list, but really? They don't even make the list.

It's more like: Safety? What is this safety of which you speak? Ooooh, shiny & spinning... and... he's off.

But also, in some ways, they are not so unlike other toddlers. It's often a (cumulative) matter of degree.

Many toddlers have tantrums (autistic ones usually more so).

Many toddlers are hard to understand, communicate with difficulty (autistic ones usually more so).

Many toddlers have problems with self regulation (autistic ones usually more so).

Many toddlers put odd things in their mouths (autistic ones usually more so).

Many toddlers are out of control in stores and restaurants (autistic ones usually more so).

Many toddlers screech and make silly noises (autistic ones usually more so).

Many toddlers spin and roll (autistic ones usually more so).

Many toddlers are odd or picky eaters (autistic ones usually more so).

Many toddlers seem "crazy" (autistic ones usually more so).

(and I could go on)

So an autistic toddler, while usually beyond exhausting to his or her family, often doesn't stand out quite so much to the world.

Those of us who are there know, can see the telltale signs, but on a playground you have to look hard to spot them among the general chaos.  They can sometimes pass; pass for "normal" (whatever that is).

But then your little kids grow up.

By the time your children are eight and a half, like mine are, by the time they are in 3rd grade (or something like it), depending on how deep on the spectrum they lie, passing's frequency can be limited, to non-existent.

@@@@@@@

I am on the bus with my son Jacob and I know we are annoying the person sitting right next to us. But Jake is happy, talking up a storm, interacting with me. So really? I don't give a shit.

(And some days a small part of me is comparing. Comparing what being out with Jake is like, vs. with Ethan. And it's never good for my brain when I go there, so I try to shut that down fast.)

Our conversation puzzles people, they double take because I sound like I am talking with a much smaller, younger child that I am seen with. Jake makes declarative statements I agree with. I answer simple questions (over and over again) with equally simple answers.

"Is that a Dad, Mommy?"

"Well, Jake, that's a man, he might be a Dad."

"He has brown hair Mommy."

"Yes, he does, Jake."

My voice when out with Jake is less casual, more drill sergeant.

I say to Ethan: "Hey, E, our stop is coming up soon, so lets get ourselves ready to get off the bus."

I say to Jake: "Jacob, Next Stop is ours. Jake! Be ready. OK, Up, now. NOW! Right now, Jake! Stay with me!" I am sharp, directive.

Then solicitous: "OK, Honey this way, stay close, down the steps there you go. Good job!" Like with a toddler. My four and a half foot, 80 pound toddler.

And while the annoyance of strangers I easily shrug off, sometimes I can feel looks of pity floating my way. And the pity? That, my friends, is much harder to take.

@@@@@@@

And then there is this:

Jake drops my hand in the middle of crossing a busy street and runs ahead to the other side because the back of the phone booth has a big old ad for Rango on it and he must go worship.

When I catch up to him, puffing (I really am too old for this shit) he is so happy, smiling, pointing (Pointing! Terrific!): "Look Mommy! Rango, Mommy! March 4th, Mommy! Rated PG, Mommy!"

And I need to berate him for running ahead, make him understand how serious an offense that was.

But he is sheer joy at this moment and I hate to make him cry which he surely will when I chastise him.

His eyes do go wide and brim with tears when my voice goes stern and my face turns severe; so fragile is my child, so sensitive.

But it's better than those other days when the wildness is in him and he laughs manically at everything, including corrections. Between the easy tears and the crazy laughter, I don't know which one is harder.

On the days with tears I know at least something is getting through to him.

"I'm sorry Mommy" he blubbers "I'm sorry, I'm sorry..." over and over and I am the ogre who has made my sweet son cry.

But if he is ever to have any independence, if he is ever to have any hope of negotiating this complex world without a chaperone standing by? He needs to learn and remember the basic rules of safely, which at the moment are so far from his thoughts.

So I kneel down and hold my son on the busy Broadway street corner, and slowly he calms, complains his glasses need cleaning now. And as I dry them with the corner of my scarf, his eyes light up. "Rango!"

"Rango, Mommy! Opens March 4th starring Johnny Depp rated PG, Mommy!" he proclaims, enthralled by the re-spotted poster.

Even though it is April. Even though he has already seen it. Twice.

He is happy. Again. And thus, so, wanly, am I.

I'm also linking this post up to Shell's Pour Your Heart Out linky at Things I Can't Say


Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

SNSS: Brotherly Love with a Side of Autism

My guest this week, Jean Myles, blogs as Mommy to Two Boys, and she is another amazing Autism Mom. 

She writes about her family: her four year old son, Jaylen, who is on the autism spectrum, and his younger brother, Xavier, who is not.

Jean also takes beautiful pictures of her sons, and they are all over her blog, woven throughout her posts.

One of the things I admire most about Jean is how thoughtful she is about every aspect of her children's lives. Read her post now and you will see...

@@@@@@@

Brotherly Love with a Side of Autism – by Mommy To Two Boys

I rubbed my pregnant belly as I heard the words for the very first time, "Jaylen has Autism."

Would this baby have Autism?  How am I going to give Jaylen all the help he needs yet still take care of another child?  Should we have stopped at one child?  

Xavier was born four months later, and aside from some sensory issues and being a total brat, he has turned out to be exactly what our family needed. 

There have been some very rough times as their brotherly love matures, but there have been some amazing moments at well.  I know there will be hurdles to overcome in the future, but I feel strongly their bond will strengthen over time.

A solid connection is what surprises me most about how my boys interact.

Jaylen, my ASD 4 year old, is truly lacking in social skills, empathy, and play skills, so to see them communicate, play together and understand each other blows my mind. I always thought Jaylen would remain in a shell and Xavier would be left without a companion, but instead their worlds intersect a lot. 

As a baby, Jaylen's therapists were so concerned over how he could spend hours in his own little world, filling and dumping buckets of toys, watching water pour out of a hose, and spinning to Maroon 5 tunes. (I know, it was as unbearable as you'd think. The most sadistic torture has nothing on being forced to listen to that guy for hours everyday.)  

Jaylen never seemed to notice or care when I got upset, my husband and I fought, or if we were trying to include him in play.  Xavi is the complete opposite, a personable, always in your face 2 year old.

It breaks my heart when Jaylen gets home from school and Xavi cheerfully yells, "Hi Jaylen!" only to get no response most days.  However, I am slowly watching their relationship evolve. 

They communicate in their own way.  They order each other to do things, ask each other to play, and have started ganging up to defend each other. 

Recently they played together for 39 minutes without a problem.  I am not sure how much interacting really occurred, but I heard them laughing and talking.

It is still interaction, even though half the time they spend together they are fighting.  For never having seen a single WWE event, they sure know some serious moves and use them often. 

Blood has been drawn, bruises have been made, and many tears have fallen because of their extreme physical contact.  My husband swears this is normal boy behavior, which I know nothing about since I grew up in a house of three girls.

Jaylen and Xavier are on the same level when it comes to certain skills.  Pretend play is one area Jaylen still really struggles with so they are learning the skill together.   Even though all we have seen is play-kitchen cooking, car and train scenes, and hours of school buses picking up and dropping off kids, I can easily see it progressing.

We still have a long way to go. 

Xavi lost his lovey at Stop and Shop and Jaylen got upset, "Oh no, is he going to be sad?"  I looked at Xavi and replied, "No, he seems OK. He isn't crying, but will probably be sad at bedtime." 

I watched Jaylen stare blankly as he processed what I said, then explained, "No Mom, not Xavi. I was talking about Lovey. Will Lovey be sad and lonely here at Stop and Shop?" 

Oh well, so much for empathy for humans over inanimate objects, but we will get there.

@@@@@@@

Thank you, Jean, for sharing the lovely, complex, growing, sometimes difficult relationship that exists between your two boys. I am especially touched that they have "started ganging up to defend each other," think that bodes well for their future. 

Now that you have read this lovely post, you are going to want to follow Jean home to Mommy to Two Boys and read her there. 

May I recommend this post or this one about the surprises of parenting a typical toddler after an ASD first child. Or this lovely post about her son riding the "short bus."

Jean can also be found posting about her work-from-home business on her work blog.  Finally, you can and *should* follow her on Twitter and like her on Facebook.  Happy Reading!


Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

Every day is Autism Awareness Day 'round these parts

Here is my beautiful son, Jacob. He has Autism:

There, so now you are aware.

OK, as you (hopefully) know, today, April 1st is the kick-off of the very official (and alliterative) sounding: Autism Awareness Month, with tomorrow, April 2nd being World Autism Awareness Day. Well now, that's starting to be a mouthful.

Rumor has it they were originally going set the big "Day" for April 1st, to coincide with the month's kick-off, but then some wise person realized it might be a tad um, cruel? ironic? to have that fall on April Fool's Day. Ya Think?

But around here? Well every day is really about Autism Awareness now, isn't it?

There isn't a day that goes by that I'm not acutely, astoundingly, profoundly and matter-of-factly aware of my son Jacob's autism.

You would think that by now it would seem to be old hat, taken for granted, a given. And in some ways it is;  just Jakey being Jakey.

But this, too: as the boys get older and as the ways that I parent, talk to and interact with Jacob and his (mostly) neuro-typical (NT) twin brother, Ethan, grow more and more disparate?  I am strangely growing more aware of Jake's autism day-to-day, rather than less. Go figure.

The fact that it really isn't going to go away, he really isn't growing out of it, and that this Autism Mom thing is rather surely a lifetime gig? Starting to settle into my consciousness about now, now that he is eight and a half and perched on the edge of little boy becoming big boy, soon to morph into teendom.

I might remember to wear blue today, I might not. I am not in a place to make big promises.

Why is blue now the official color of autism, anyway? (I thought it was "Rainbow Puzzle.") Well... I know some people think it's because that's the color of Autism Speaks logo, but I like to think it's blue from autistic author Daniel Tammet's lovely book "Born on a Blue Day."  Because I really like what Autistic folks have to say, themselves, about themselves and how they experience their neurodiverse brains.

Well, there is a lot of wonderful going on right now...

Buildings are being lit up blue for WAAD. (I'm just not typing the whole thing out each time, OK, you all know what I'm talking about, yes?) The amazing Jess of diary of a mom has been one of those spearheading a campaign to light the White House blue.

Alysia of Try Defying Gravity got Parents Magazine to post autism family stories on their blog all month long starting with hers, today!

Just about every autism blogger I know -- and we are many, a veritable small (and feisty) army -- is posting about it, embracing the blue or explaining why they're not.

I felt I should do one of two things... write another "important, big thoughts" post about autism like this one: From Autist to Artist  or this one: The Beauty of Each, Our Every Child.
 
Or, on the other hand, I thought I might write a moving tribute to my beautiful son Jacob, celebrate his specialness, the gift that he is in our lives, a balanced view of the joy and the struggles....

But, ahhhhhh, crap, that was just not to be. I've had sick kids home from school (one or both) for three days now. My heart is just not into it. I want to burrow inward, not expand outward.

I am sleeping neither well nor enough. In short: I am really worn out, worn thin. (My soul that is, my body... due to stress eating... thin not the operative word here.)

I feel light-years away from brilliance, from inspiring anyone, least of all myself.

I am so glad that I started the Special Needs Sibling Saturdays guest post series, and have some amazing posts queued up in the hopper, so that at least something useful and wonderful will appear here every Saturday for the next month, and beyond.

And yet, I feel like I have no good excuse for this. There is no one thing, nothing particularly, specifically going wrong in my life.

It's just the cumulative stress; the day in day out, never a day off, never turning the reins over to someone else, never catching my breath before running off to the next mini-crisis, never just turning my responsible brain off even if I have handed a few tasks over to someone else.

I am feeling crushed, not by a boulder but under the million pebbles, the aggregated weight of being a special needs parent, of autism, today.

And I so didn't want this to be the story I told today.  I want to tell you all about the beauty of my son Jacob, who is on the autism spectrum... or has autism... or is autistic or... I don't know what's the "correct" way to phrase it anymore.

My friend Peter, who is himself on the spectrum with NVLD has a son who is likewise "on the spectrum" somewhere but without a clear diagnostic label.  What he says about his son is: "G" has a 100% diagnosis... of being "G."  And some days that's what I want to say about Jake.

Jacob is... Jacob. Unique and beautiful.  My autistic snowflake.

OK, I know I'm rambling now. Some days I like to ramble, to explore my brain, where my tangled thoughts take me. Today I just feel lost, unfocused.  But today, this will just have to do.

This is me, this is my (ADD-rific) brain, this is my family, with autism. Messy, but hanging in there.

Here is my beautiful son, Jacob. His favorite color is yellow. He has Autism:

There, so now you are aware.



Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

O is for Oxygen

O is for Oxygen

Because?

Oh, why the hell not?

It is the most abundant element in our world's crust, makes up about 20% of the earth's atmosphere, is the useful part of the air we breathe, suffusing our very cells, the source of their energy.

But do we ever think much about it?  No, it's just there, all around us. Unless of course, it's not. And then, well, we're in trouble, unless that gets fixed, and fast.

Kind of like language. Being human, we use it all the time, every day.  We think in it, but don't think about it much.  Unless, of course, it's not working; not developing right from the start or slipping away, disappearing, suddenly due to trauma or slowly at the end of life. 

And then?  There is trouble.

I was an early talker, precocious, creating my first poem at two: "Mom, it's the moon in the afternoon!"  And my kids?  I expected them to be just like me.  Silly how first time parents are about that stuff, no?

When the boys weren't talking at a year I was frustrated, but everyone told me to chill my jets, that my expectations were unrealistic.  I was reminded that they were boys, they were twins, both reasons they would be a little later in their talking.

At fifteen months, I knew something was wrong, but once again, everyone pretty much patted me on the head and told me not to worry, all still well within the norm.

This was just a scant few years ago, before autism and speech delay were firmly embedded in the national psyche.  Before every pediatrician had a five point checklist of developmental milestones to go over at check-ups with big red flags for autism clearly spelled out.  When they were still things being whispered about in the dark corners of mommy and me classes.

When I asked for a referral to Early Intervention at a year, I was scorned; when I asked at fifteen months, I was dismissed again.  At eighteen months with neither Ethan nor Jake able to claim a stitch of functional language to their names, I finally got the go ahead to pull the parachute cord, stop my sons' developmental free-fall.

And the funny thing?  In spite of both having no language?  It was for completely different reasons.

Jacob had no language, but he did have occasional words,  You would say a word to him and he would repeat it, clear as a bell, right back to you, but then it would disappear, never to be heard again.  There were all the mechanics of speech in place but no communicative intent. And without that?  Speech does not become language.

Ethan, on the other hand, had a ton of communicative intent, but was having trouble with the mechanics of speech, wrapping his mouth around the words.  And boy, was he frustrated.  His tantrums at a year and a half, engendered by the frustration of being unable to let his thoughts be known?  Awe inspiring.  And heartbreaking.

We taught him a few signs and he worked them furiously, useful ones like "more" and "enough."  He took to the speech therapy offered by Early Intervention like a duck to water, slowly learned how to talk to us.

By two Ethan had a few words, but they were not easy to understand.  He had initial consonants only, and then it was all vowel soup.  I had to translate, was the only one who knew that “coh-ee” was a crayon, while “coo-ee” was a cookie. 

And then?  At two and a half, nearly on the dot, he had a language explosion and we never looked back.  Ethan is now a "high verbal" kid; a conversationalist with a huge, sometimes surprising vocabulary.

Jacob, on the other hand, was clearly another story.  It was slow going. We figured out there was a lot more than speech delay going on there.  Eventually he got a diagnosis, and the therapies he needed, including ABA, to begin his march up the language ladder.  It was a struggle.  I had to put on my autism-mom-cast-iron-underwear, my mommypants, and scrap, scrape and fight to get all of his necessary services and therapy hours.

There is too much story here to tell in this one post, but this small part I will...

Most people don't realize that speech and language are not the same thing, that words can be used to label and to communicate, and that one will not necessarily evolve into the other, unless a vital connection is made. That spark that is communicative intent.

At nearly two and a half Jacob had words, could label like a champ.  Show him a cup, he said "cup," turn on the faucet and he quickly came up with "water."  But when thirsty?  Jacob would just cry and cry.

Because the switch had not yet been thrown in his brain; the one that let him know that these fun labeling things, these words?  They had a purpose; could be used to communicate his thoughts, his needs, and most importantly, to get those needs met.

And then, the switch got tripped.

The day Jacob made his first request, I think it was "Up?" when he wanted to be picked up, was one of the happiest days of my life.

I think I had been holding my breath, at that point, for nearly two years.  And finally, that day, I was able to exhale, inhale again.  Bring some fresh oxygen, that stuff of life, into my brain; know that Jake would, could, eventually, enter the world of language, and be alright.

This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. And isn't "O" such a lovely round letter this week?

Looking for Comments? I still haven't fixed my "Intense Debate disappearing comment link on home page problem" yet, so if you are viewing this on my home page and want to read my comments or make one of your own, click on the post's title to bring you to the post's page view. Voila!   Still don't see them? Is your browser's pop-up filter set too high? (Hopefully this will get fixed soon - sorry!)

Vote for me yet today?  One click is all you need to show me your love!

The Beauty of Each, Our Every Child

There is a documentary that's gotten a lot of buzz lately called “Where's Molly?”  A recent CBS news feature on it has been making the rounds on the internet.  I am assuming that many readers who are part of the Special Needs parenting community are familiar with it.  If you're not, you can see it here.

It's the story of a man’s search for his autistic sister, who disappeared from his family when she was 2 and he was 5.  She was vanished into thin air; "sent away" never to be heard from or spoken of again.  And then, some 47 years later he began to look for her.  And he found her.

I saw that video the other day and couldn't stop crying; rivers of tears just poured down my face.  And knowing that there are so many other stories like this one?  So many children that were just thrown away like yesterday’s rubbish?  Is beyond heartbreaking.

Last month we had our first parent-teacher conference for our son Jacob (who is on the Autism Spectrum) at his wonderful new school.  It went so well, and was lovely to see how fully his teachers and support team saw Jacob's strengths as well as his deficits.

But just before the meeting, when my husband and I were having a quick coffee together, he looked up at me and asked "If Jake had been born in our time, they would have called him 'retarded' wouldn't they?" 

And I had to say "yes."  No one would have looked under the language deficit, beyond the sensory seeking behaviors and seen his intelligence and humor.

If he had been my brother instead of my son?  He might have been sent away.  How sad that makes me can't even begin to be touched.

And then, tucked away in the back of the December 5th Sunday New York Times Style Magazine, there was yet another article, an excerpt from a book written by Allen Shawn about his autistic twin sister, sent away to "camp" when they were 8 years old (my sons' age) never to return. 

Unlike Molly, she didn’t completely disappear. Her family visited, kept contact.  But still, they lived apart, in separate worlds, her home lost.

And then I have been having even darker thoughts.   Because Jake's twin brother Ethan has been doing a school unit on immigration, he had to do a lengthy report on his family history.  He was interviewing me and I told the tale of my mother's parents both coming over on boats from Eastern Europe, through Ellis Island (the classic New York Jewish immigrant story). 

My mother's father's family right off the boat.  Literally.  On Ellis Island, 1920.

As part of this, I had to answer questions about who came over and who was left behind.  And while my grandfather's whole family came over, my grandmother's whole family stayed behind; they had a business they didn’t want to leave.  She was the only one who crossed to America.  And she lived.  And they all disappeared. 

Telling this tale opened up the story of the Holocaust to Ethan, who, at 8 is starting to be able to handle some harsh truths like this.  As I was finding gentle ways to talk to him about this, I wanted to make sure he knew this was not just about the Jews - our personal part of the story, the 6 million lost - but also to include the other 5 million, the long list of those considered "other," "lesser," "unworthy to live." 

And I listed Jehovah's Witnesses, homosexuals, and Gypsies, talked about the absurdity of using skin color as a measurement of value.  And then, racking my brain to remember who else was on the list I hit the disabled including "Mental Defectives."  I was remembering they were among the first to go, near the top of Hitler's "undesirables" list.  How he had "gas vans" drive around cities picking up the mentally unfit and disposing of them immediately. 

And I nearly lost it because I realized that meant Jacob.

That would have been Jacob, had we lived there, then.

Or if that were to suddenly be replicated here, now.

(Don't be complacent and think that couldn't happen.  The German Jews thought they were essentially regular German citizens, completely assimilated into society.  All it takes is a charismatic leader with really bad ideas, good spin doctors, and a strong military to back him / her up.)

And so I struggled not to let anything show on my face as I felt the full on horror of that scenario playing out in my mind while I blithely went on, deflecting Ethan from this too soon knowledge.

Stumbling over my words: “There are others on the list, I don’t remember exactly who, but that's not important. What’s important to remember is how wrong it is to judge whole categories of people by what they are instead of by who they are, as individuals.”  

The assigning of differential values to human beings because they belong to one category or another is fundamentally wrong in my book, and I work hard to convey those values to my sons.  It was ever this way with me, but has become even more so now, as I look at Jacob through the eyes of others and see how easy it is to dismiss him, to place him in a category of "lesser."

I, like so many other Autism Moms was particularly struck by one moment in the wonderful Temple Grandin bio pic on HBO this year.  When her mother says, fiercely "Different, not less.”  

And that has become, I think, for many of us our rousing battle cry as we seek for our children all that they deserve: dignity and respect; to be included in all that they want to be included in; to be educated BEYOND the lowest rung of “appropriate” - to be educated creatively and caringly to the fullest possible extent, so that they can achieve their highest possible potential.

And to never stop searching for what that potential might be.  Even when it is hidden inside an infirm, floppy body, or tied up in knotty language that tangles with every turn inside the brain. 

As more and more of these stories of hidden away, lost children come out, as I think of the many other times and places where children like Jacob would have been thrown away, I am so thankful for the time and place he managed to be born into.

We are nowhere near where we need to be, to truly be an open-minded society that sees value in every individual.  But still, it’s the best time yet that has ever been for being born different.

The gas vans are not coming for my son.

Not today.

And I find comfort in the knowledge that all of us folks in the Special Needs parenting community around the world are striving to make a brighter future real; to help everyone, everywhere see our children as different, but not less. 

To discover and to truly value the wonders that lie within; the beauty of each, our every child.

Note: This was originally posted at Hopeful Parents, on my regular monthly day there, the 10th of December, as "Value-Able."  But I had posted it very late in the day (you can read why, here) and I have strong feelings about this post.  It's another "big one,"  full of things I'd been mulling over for a long time before they coalesced into a post.  

I almost held it back, to keep it on my own blog, but I had nothing else to put up over at Hopeful Parents.  I take my commitment to that blog and community seriously, did not want to miss my appointed time, so up it went.  But now I realize, I also want it here, back "at home" with me.  So I am re-posting it here, with a few additions and tweaks.  And choosing today, Christmas Day, to put it up? A timely reminder to value EVERY child born.



Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

I've Got Stones

Gall Stones, that is.

What?  You thought I was talking about my Mom-balls again?

Yeah, I've got those, too.  Just try to take away a vital service from my autistic son, Jacob.  Mess with him and you will see my giant huevos come out, big time.

I mean, even though my *actual* eggs are kind of over-cooked at this point (see my last post), my metaphorical ones?  My "don't mess with my family" ones?

Outsize and ready for action.

But about that other thing?  Yeah, I'd really like to pretend this isn't happening.

But doubling over in slicing, cramped pain and then making a mad dash to the women's room to gag and dry heave for 10 minutes during my son's basketball practice on Saturday sorta makes that impossible.

I cannot say enough about how happy I am to have the good fortune to have actual medical professionals in my family, both natal and the machatunim.  (That's Yiddish for the whole {damned} family you marry into - you know, the in-laws.)

I had already self diagnosed via the friendly internet on Saturday night.  When I was finally able to stop moaning and sit upright, that is.

But you know?  The internet?  Scary place to do medical research.  Reminds me of that old Nicole Hollander cartoon, the one where Sylvia is reading a book called "Infectious Diseases."  As her daughter warns her to put the book down, she yells out "Oh my god, I've got anthrax!"

In spite of the chance to just completely terrify myself, I kept a mostly level head.

But the problem with hot-knife style searing pain of mind bending proportions in the area of one's major organs?  Hard to believe it's no biggie, not connected to a serious condition requiring immediate medical attention.

But a nice chat with my lovely ER doc cousin, Jessie, in Vermont reassured me that had I come into her ER, she would have been all "Crap! Why is this person in my ER?  It's just a gall bladder attack, nothing dangerous. I had to wake up from my nap for THIS?" (She often works the overnight shift.)

She told me to see my doctor on Monday, went over the warning signs that should send me rushing to the ER for real, and gave me advice for how to get myself comfortable in the meantime (antacid, Tylenol, rest, duh).

And the next day I felt mostly better, which was a mighty good thing, it being the Sunday of my husband's family's annual Big Chanukkah Party.  (I know, not technically Chanukkah anymore.  But?  Shhhhhhh.  It was so early this year.)

What?  You want to see pictures of that?  OK here's a few:

Lighting Grandma Blanche's menorah

Presents Galore!

Grandma Sylvia got a zhu zhu pet

And at this bash?  Yes, indeed, I sidled up to Danny's cousin who happens to be a G.I. with that "you are about to be cornered by a relative with a medical question" look on my face, and he did not back off and disappear, which I took to be the go-ahead sign.  (If you're confused here?  Folks, we're Jewish.  To us "G.I." is short for Gastro-Intestinal as in a doctor's specialist degree, NOT Government Issue as in "G.I. Joe".  Please!)

So I asked cousin David, "Do you do Gall Bladder?"  And he gestured for me to continue.

I described my symptoms, and when I got to the part about the pain finally localizing in the upper right quadrant of my abdomen and then radiating to my back under my shoulder blade, he nodded.  Then he poked at a spot and I yelped and he said to call his office at 8:30 the next morning and they'd get me in right away.

Oh yes, I married into the right family!

So all this is how, yesterday, I came to have my first complete and thorough physical exam in... maybe 10 years?

The problem with being essentially healthy and taking care of multiple elderly parents and young kids with all sorts of issues is that you can neglect your own health big time.  (I *might* have done that.)

Until there's a big wake-up call.  Like, oh, feeling like you're being sliced in half by a ninja out of the clear blue at 2:45 on a Saturday afternoon while your autistic son is attempting to play basketball.

What?  You want to know how the basketball is going?

Yes, I did share my excitement about it, and planned to report back right away.   But life got... busy, you know?

Briefly: it's going well-ish.  (A full post account is coming up soon, I sort-of promise.)  Here, look at some cute pictures (sorry about the odd color, there's weird yellow lights in that gym):

One excited boy

Playing basketball, sort of

So, back to my foray into all things medical yesterday... having been a basically healthy person for 50 years (and believe me, I know how blessedly lucky I am about this, am grateful & do not take it for granted) my experience with medical procedures has been mostly on the sidelines.

Let me tell you, there was a more than slightly surreal quality to be personally undergoing the same diagnostic procedures that I had sat through countless times as the support person for a parent or friend.

Like deja-vu with a side-step.  Like in those dreams when your point of view flashes back and forth between a first and third person perspective, leaving you wondering if you are watching or experiencing the events at hand.

To be the one in the ugly, ill-fitting gown on the table myself?  Very, very weird.

What?  You want pictures of that, too?  Well, here's me waiting for someone to come into the room and do something to me:  

Beige is so NOT my color

So I've now had my first echocardiogram, folks.  And you young people with healthy hearts who have never had to care for someone with cardiac troubles will not get what a big deal this is.  But if you're on my side of the fence, you will understand the thrill, and why I'm bragging:

My ejection fraction?  Was terrific.  (The "ejection fraction" is a measurement of the heart's efficiency at pumping blood, and is severely compromised in Aortic Stenosis, the condition that did my father in.)

I jumped with joy.  (Well, I would have if I weren't laying on a table covered in yucky ultrasound goop.) 

Considering that I am essentially allergic to exercise?   I have no right to have a heart as healthy as mine appears to be.  And I am NOT going to take this for granted.  I am going to thank my lucky stars and work from here on outward to not let this good start turn sour through inactivity and complacency.

I am a 50 year old with young children. I need to do all I can to ensure I am here to care for them through their formative years, to do all that is within my power to not abandon them too young.  (Please hold me to this.  Yell at me if I don't start to take better care of myself in the future.)

I am guessing I have my love of dancing to thank for the positive state of things.  Those years of my late teens through mid-twenties when I went out dancing with wild abandon two or three nights a week.

And the way I danced?  Way aerobic.  I would work up quite a sweat.  Hell, I would often sweat completely through and thoroughly soak my clothes.   Looking back it's a wonder anyone ever dared go home with me afterward, sweatball that I was.

Although it must have helped that, as an old boyfriend put it, I "danced like a girl who likes to fuck."  Ahem.  Guess I wasn't afraid to move my hips.

Sigh.  It's nice thinking about a time when my body was more about pleasure than pain.

But getting back to the icky medical stuff.  I ended my day at the imaging center I had taken my father to many a time before.  Once again, the odd disconnect of shifted perspective.

"You've been a patient here before?"  The receptionist asked the question as a not-question, rhetorical. Clearly I looked familiar.  She thought I was a returner, a repeat customer.

"No" I answer.  Then, because she has raised her eyebrow sceptically I start to question it myself.  "I don't think so..." I stammeringly add, "I've been here so many times, but I'm pretty sure that it was always to bring my father in."

"Well, let's check, then" she says, inputting my statistics into the computer, which spits back... nothing. First timer.  Fill out the thousand forms and bring back the clipboard.

The technician is friendly, chatty, and I don't mind.  Gowned and gelled yet again, I am lying on the table when she swings the monitor around to show me: a solid white almond shaped nugget in the black hole that is my ultrasound gall bladder.  "Stone" she says.

Well, at least I wasn't imagining things.

"Is it a big one?" I ask, watching this thing taking up a good quarter of my gall bladder float around like an jumbo olive in a small martini glass.

"Oh, yeah, I would say that. The good thing is, it's too big to pass through the duct."

"That's a good thing?"

"Yeah, better than the granules, they really hurt going through."

OK, I'm happy to just take her word on that.

So now we wait on the blood-work, schedule another test in a few days (they're going to make my blood a teensy bit radioactive), and then?   Review the findings and evaluate my options.

Apparently, wave a magic wand and make it all go away?  Not among them.  Damn!

I may have a date with a laproscopic surgeon in my near future.  We may wait and see.

And if I do end up having my Gall Bladder removed?  Here's to hoping the guy doing it looks just like Weird Al Yankovic in his classic "Like a Surgeon" video.

Because I want to go under the knife laughing.

Looking for Comments? I still haven't fixed my "Intense Debate disappearing comment link on home page problem" yet, so if you are viewing this on my home page and want to read my comments or make one of your own, click on the post's title to bring you to the post's page view. Voila!