Not my best

I am having a really hard time this week. A really, really hard time.

It's a limbo week, and that's where I am. Feeling stuck and rudderless in every way imaginable. This is the last full week of "summer vacation" and we have no plans and I have no spontaneity left in me. I was going to try to find somewhere for us to go this week, last minute and depending how we all felt.

We had some options: Vermont to my cousins, a few mid-week days at the beach. But I hadn't counted on Irene and her aftermath. Or on how much my boys after their first week away at sleep-away camp would want to just go home so much. To be, in fact, desperate for HOME.

So here we are.

I have mountains of laundry and unpacking to do, which I am way too slowly working my way through, thoroughly unmotivated but tired of looking at the suitcases in my living room.

And I am so not doing my best mothering right now, finding my boys on these beautiful last summer days mostly inside: one on the Wii, the other on the computer. We live in New York City. I can't just toss them out into the backyard. There IS no backyard.

And I'm on the computer, too. But I'm not writing as I need to, just aimlessly surfing and noting how many more comments and readers other bloggers have. Those by now completely irrelevant BlogHer recap posts that are almost but not quite done? Still undone. I just don't have it in me to finish them.

Until the upstairs neighbors came home late yesterday all of Ethan's friends were out of town. Jake still has no friends. (And I feel sad and guilty beyond guilt that I haven't been able to do anything about that yet.) So playdates aren't happening.

And the two of them together are just awful right now. Awful. Jake in Ethan's face, talking non-stop. Ethan screaming at his brother to shut up and leave him alone. So separate screens is the best I can do right now. Sigh. Biggest sigh ever.

And I am feeling how much this is not how I wanted to parent. I always pictured us as a minimal TV home. Envisioned myself to be the mother leading her kids on nature hikes, visits to the zoo, days at the beach, rainy afternoons spent painting and sculpting, reading books, exploring the city's museums together. Hanging out with other families, frolicking.

But then again I didn't count on autism, and boys who fight all the time, and my utter exhaustion.

When friends write about how they wish they had another week of summer and how much they are enjoying this relaxed time with their kids it just hammers at my heart. Because that is how I want to feel, it's how I expected I would feel. I DO love my time with my kids but individually, because going out or doing anything with them together is. just. awful.

And we are all together 24/7 until school starts right now. And I don't know how I'm going to make it another week and a day.

So I am one of THOSE moms, desperately waiting for school to start (Thursday the 8th for Ethan, Monday the 12th for Jake). And I hate that. I hate feeling this way.

And it's so my instinct is to hide when I feel like this, to disappear. And that's what I was planning to do. But then in my surfing this morning I saw all the tweets about folks who had linked up their posts with (this week's SNSS guest) Shell's "Pour Your Heart Out" linky.

And then I remembered that amazing fact that Aunt Becky had recently written about in a post, how writing actually helps us heal.

And then I thought "I'm a blogger, Damn it! I'm not going to curl up inside myself and hide away, I'm going to write about it."

So here's my ugly, all splayed out on the page... screen... whatever. It's not my best post. But it's all I've got today. So it will have to do.

(P.S. Updated this afternoon: It worked! Feeling much better now, about to drag the kids out to the park. )

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


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Goodnight Irene

Photo source: NASA Goddard Photo

I figure having shared my neurotic fixation on the coming hurricane with you (you’re welcome) I have to write about the actual event, right?

Well, here in my neighborhood, New York City's Upper West Side (UWS)? A nearly non-event.

We live on high ground with solid bedrock underneath, in a brick apartment building built nearly 100 years ago when things were made to last, well, centuries. We’re on a single digit floor, high enough to look at thrashing tree tops, but well below the strong shearing winds. Safe.

The drive to pick up Jake from camp and bring him back to NYC was a bit hairy, with bands of drenching rain coming out of nowhere and then disappearing completely. But it was mostly the tension of having to make it back before the bridges and tunnels closed (most never did) combined with everyone's anxiety, as well as my own, that made it intense.

Really, I've driven through worse thunderstorms. Two so far this summer, in fact.

And while I had called and e-mailed like the crazy woman I was on Thursday campaigning to get Jake's camp to close a day early (it did), I was sad to have to miss the closing ceremony planned for Sunday, which was to have been a lovely family event.

I had been hoping to connect with other local autism families and possibly even make connections with the parents of kids Jake had been particularly drawn to during his week, ever seeking to help him have a true friendship spark.

Also? I love any chance to hang out with special needs / autism parents. We're a big-hearted, tempered-tough breed, usually with a good sense of gallows humor (at least the folks I like to hang with have one).

And I missed that. It was more of a "grab your kid and run before the storm" situation. Packing had clearly been done in a hurry. And since 3 of the 12 kids at camp were named Jacob? Yeah, we have some other kids' T-shirts and I'm sure they've got some of my guy's stuff.

I still haven't completely inventoried what has gone missing yet. But the most important thing - the irreplaceable blue bear? Safe and sound with us.

Others have not been so lucky. My heart goes out to them

I have spoken with friends in the suburbs and the country without power, those whose children were deeply frightened by crashing trees and rising waters.

A blogger you may know - Kelcey of the Mama Bird Diaries - has been flooded out of her home, and for God knows how long. She has young children, it's going to be rough, so go show her some support, here. (And, amazingly, she's kept her sense of humor intact.)

Vermont is in bad shape, having never dreamed, landlocked and deeply northern, that a tropical storm could impact, devastate them so.

Here there are a few trees down, but the sun was shining today and all the world seemed back to business as usual. We were out and about, too. The boys and I treated ourselves to Shake Shack for dinner tonight, and the joint was hopping.

I was pissy about folks complaining, whining about the "big deal about nothing" and feeling that the city shouldn't have shut down.

"I'd rather be over-prepared than under-prepared, wouldn't you?" I asked them, reminding them that there were people who lost lives, places where it wasn't "nothing" at all. (Yeah, I was a bit of a bitch today.)

And now we're back to trying to find ways to fill these last days of summer before back-to-school-ness takes over our lives. We will be getting busy, soon.

There are still mountains of musty smelling camp laundry to be done, bags to be unpacked from all our journeys (including my BlogHer swag bag - what the hell is IN there, anyway?) And summer's curls to be shorn, and school supplies to be hunted and gathered.

We are moving on.

Goodnight, Irene, now fizzling out over the deep blue Northern sea.

Your winds whipped down our street, you rains lashed our windows; and soon you will be a story we tell... where and how we danced with Irene.


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SNSS: It’s Just Not Fair

Today's SNSS guest needs no introduction (but of course I'm going to give her one anyway). It is the lovely Shell of the blog Things I Can't Say. Yes, she of the wonderful "Pour Your Heart Out" link-up and the weekly "Blog Friend Feature." A community building blogger, if ever there was one. 

Did you realize she was a special needs parent? No? Well, she doesn't talk about it all the time, it's not the main focus of her blog, but neither does she hide it. It's there; sometimes explicit, sometimes implicit (especially if you have SN-kid-dar like I do).

Shell has three boys, and her middle child has learning, behavioral and attention disabilities due to severe lead poisoning. If this strikes fear into your heart, it should. This is a terrifying thing for her family to deal with.

Shell is a fierce momma bear, a protector and advocate for all her children. She is also a special, special person, creating community and good will throughout the bloggosphere.

But the main thing of importance here? Shell is a wonderful writer, telling it straight from the heart, as you will see: 

 @@@@@@@

It’s Just Not Fair - by Shell

All siblings fight, right? It’s normal that my boys sometimes call each other names or get physical with each other.

But sometimes I think it’s made worse by my 5 year-old, my kindergartener A’s difficulties from lead poisoning.

And other times, I think it’s made worse by me.

If A bites his 3 year-old brother, it’s often a result of M having provoked him numerous times. Because A doesn’t really start things with other kids. He is in his own little world.

We call it “1-2-3 Explode” since he tends to shrug off the first two things that someone does to him in a short period of time. But, if they keep bugging him, he’s going to explode. And it’s almost always in a worse way than what another child was doing to him.

In his mind, his brother was doing something to him so he was going to fight back. He doesn’t have that concept of “worse” actions. Like how we view a brother biting as being worse than hitting. To him, it’s all bad.

And while I cannot give him a free pass on the biting, I tend to get frustrated at M, for starting it in the first place. He knows better. Yes, even at 3, he knows better.

Or maybe A and his 6 year-old brother J will be having an argument. Names are flying. “Poopy brother” and “Butthead” are common. I remind them that we don’t talk potty talk unless we are in the bathroom.  But, then J will get really frustrated and call A “Stupid” or “Dumb.”

And I get so angry. A is NOT stupid.

But, then again,  J is not a butthead either. And yet, I didn’t get that mad at A.

Sometimes it’s the little things. It’s snack time and I let A choose his snack first because small things, like not having the snack he had his mind set on, can make him meltdown.

At dinnertime, if J or M don’t like what we are having, that’s just too bad. But if A is about to shut down because he’s hungry and he is focused on having a peanut butter and jelly, I’ll give in.

When it’s time to clean up and A sometimes squats down on the floor with his hands over his ears, I ignore him while encouraging the other two to continue to pick up their toys.

These incidents don’t happen all the time, but they are a regular part of our life. Because of the way that A can shut down, I have to decide what is worth the battle. 

Sometimes I look at what’s going on, sigh and think that’s not a hill I want to die on today.

But, I don’t give his brothers a free pass like that.  Because they don’t need it.

I wonder how much they resent their brother for it. I wonder how much they resent me for it.

Because it’s really not fair at all.

But, it’s not fair that their brother has lead poisoning, either.

It’s not fair that M can join in with A’s soccer practice better than A can. It’s not fair that J can waltz off to his classroom without needing any help and A needs help in staying focused on where he’s supposed to go.

So, yes, they are treated differently. Because they are different.

I just hope as they grow up, they can learn to love each other for those differences.

@@@@@@@

This post is sad and moving and way too true. It is a struggle so many of us share. I know this is a painful topic for Shell, and I want to thank her for opening up her heart to "pour it out" here with us.

I can't even begin to tell you how many times Ethan wails "it's not fair" when I make him do stuff Jacob gets a total free pass on.

I have occasionally snapped "Okay, do you want to trade? Do you want to be the one with autism?" at him when I just can't stand it any more. I'm not proud of it, but it actually shuts that down pretty fast. So, yes, Shell, I can totally relate.

OK, so now that you have read Shell here, you are going to want to follow her home. So go read her at her blog Things I Can't Say. 

You may want to start with this incredibly heart rending post, where Shell talks about her son's lead poisoning, or this one about how being fair does not mean everyone always gets the same. Or, in a lighter vein, try this one about a mom-fail involving TWO self-imposed haircuts in one week.

Finally, you should follow Shell on Twitter, and go "like" her on her Facebook page, because if there is a blogger with a bigger heart than Shell? I haven't met her.

And once again, Shell, thank you from the bottom of MY heart. You have truly touched me with your post this week.


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Beside Myself

I am not someone who feels anxiety easily; or often.

That's the good news.

The bad news is that my tolerance for anxiety? Very low.

So on those rare occasions when I DO feel anxious?

I'm a nut. A total blithering mess. Fruit loops.

If I talked to you, or left you a voice message, or sent you an e-mail today, you completely know what I'm talking about.

Yes, today was one such day.

And what has me so cranked up to 11?

The boys are both away at summer camp for the first time this week, so as I'd mentioned, I'm a bit off balance from that.

But what has completely unhinged me is the hurricane thing. Irene. Headed for my fair city of New York as we speak.

And then? Up through New England, like where Jacob is at camp right now, and where I was supposed to have picked him up at about 2 pm on Sunday, which is currently right about the time Irene is predicted to make landfall in the New York area.

So, um, yeah. something's gotta change.

And I leave at 7 AM tomorrow morning to pick up Ethan at HIS camp in Pennsylvania.

We had all sorts of plans and rendezvous with friends planned, and now it's all gone to hell in a handbasket and I'm scrambling to figure out when and how I will be scooping my Jacob boy up and running him back home...

I was going to say "to safety" but really? I'm bringing him home into a category one or two hurricane.

But we live on high ground in a brick building, so I assume we're OK.  And we don't really need to take public transportation anywhere, being in walking distance of so pretty much everything.

And Ethan would love to live on breakfast cereal and cookies and crackers and other such "non-perishable food items" for three days, so that's all good.

But I had things I was supposed to DO today -- enjoy my last day of "empty nest"... clean up my apartment... do laundry... finish my TWO post BlogHer11 posts including my "Secret Style Session" re-cap which is DUE today at the latest.

But all I can do is watch the hurricane updates on TV and my computer, and send nutty emails to Jake's camp director, and call everyone to set up contingency plans and find places to sleep along the route, and mostly spend all my time running "if this, then that, but if this other thing, then that other thing" scenarios through my head.

You ever see a dog who has decided to try to catch his tail and will. not. stop. until he has it in his teeth, spinning faster, ever faster in circles on the rug, as that thing he MUST catch just keeps jumping out of his reach?

Me, today.

My brain on anxiety: not a pretty picture.

I believe the term "hot mess" was coined for such a state.

So ladies of Mom's Fashion File and all your wonderful sponsors, please forgive me for not getting my post in on time. I will try to finish it from the road on Friday, but may be too busy jumping out of my skin while watching CNN. (In the meantime, readers, go read my friend Cheryl's WONDERFUL account of the event here on BlogHer)

OK, time to catch a few hours of shut-eye before I head off to my doom pick up my sons from camp.

I feel sad that I have to pick Jake up early, that he won't get his full week away, but safety first my friends. Safety first.

My tail! I think I've finally got... oh, damn, there it goes again....


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(Hurricane graphic courtesy of US Government NOAA)

Wordless Wednesday: What I Did on My Summer Vacation

For those of you who were reading me last year? This is going to look awfully familiar, because we were back at the in-laws' Great Barrington house again this year.

Which means a lot of swimming in the pool, Jake in love with the car, and me obsessed with the magnificent flowers in Patty's lovely garden. Wanna see?

Jake the fish

By the time I pulled out the camera, Ethan was already done, warming up in the sun

For those who doubt - see my husband does exist!

Flowers!

Big, beautiful flowers!

Ethan contemplating his new lefty mitt

Once again, Jacob delighted in watering the car

He takes his job very seriously

He even got Ethan to put down his glove and help out this year

Dude can get a little bossy

Jake supervising, Ethan pouring

Inspecting his work

Jake showing me where the hose is, to fill his watering can: "Go over THERE, Mommy."  If you know anything about autism, you know how important this photo is.

In a few years, Dude, in a few years. (Yikes!)

Brothers

Also? It was a really short trip this year. Rain, rain, rain, rain. But two glorious sunny days.

I could sit in this back yard forever

And then we headed home to pack up the boys for their week of camp. And for me to then drive back UP to the Berkshires 2 days later. This will definitely be known as the summer of the car. (And no, I'm not ever really wordless. Deal with it.)

And I’m linking up to Wordless / Wordful Wednesdays all OVER the place... at Angry Julie Monday... at 5 Minutes for Mom... at live and love...out loud... at Dagmar*s momsense... at Parenting by Dummies.


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Five days of empty nest

At camp welcoming ceremony with Jake

Well, the boys are both at camp and we haven't gotten a phone call to come scoop them up yet, so I've got my fingers crossed that nobody gets injured and the phone call never comes, and this experiment will turn out to have been a whopping success.

I'm still stunned, and reeling. Delighted by the freedom and missing them fierce, all at the same time.

I got home yesterday at about 6 pm, after driving Jake up to camp in the Berkshires on Sunday and then staying overnight up there with friends, not wanting to do the round trip all in one day.

I was supposed to leave in the morning, but I was having so much fun being a grown-up, socializing as me and not as "mom," I stayed through lunch. It was the most vacation-like 24 hours I'd had all summer, and it was glorious.

Last night my husband had plans to go out to dinner with friends and I spontaneously called up a dear friend and had dinner with her, myself. Did you catch that word "spontaneously"? Been missing from my vocabulary for, well, nine years now.

Walking out the door yesterday evening without making plans for children, hiring a sitter, calculating how long to stay out (the "is the extra hour of fun worth the extra hour of sitter" quotient)? Glorious. And strange.

Strolling with my husband down Riverside Drive on our way to our respective dinners, I was positively giddy.

But today, I've felt a little un-moored all day. "Mom" is so at the core of my identity, I don't know who I am if I'm not caring for or planning for the care of little ones.

Even when I was across the country at BlogHer, I was still calling, getting texts, still the one "in charge" of arrangements, even if the execution of them was in other hands.  I had even gotten a 3:30 AM call from my husband one morning, California time, needing to know where to find the boys' lunch boxes. (Scared the bejeesus out of my roomies, too.)

But this? This is hand them over and then pick them up. Totally out of my hands. Totally unprecedented.

But the instincts, they don't just go away, even when the brain says "stop."

Tonight at about 6 pm, at the time when even if the boys had been out and about all day they would surely be home and needing to be fed, I was jumpy. I just couldn't shake the feeling that I needed to be doing SOMETHING for SOMEONE. Nope.

I am going to try my hardest to enjoy my last 2 days of freedom. I have a lot to do, busy, busy days planned, but I will be sleeping in Wednesday and Thursday. 6 AM wake-ups, 7 days a week for years on end has been brutal.

And I'm going to try to quench the little back-of the-mind voices that are worrying about my boys. Especially Jake who seemed so barely ready for this, about whom I went back and forth, and back and forth before deciding to go through with it.

It's so hard with him, to know how much he actually understands about what is going on around him. I have often both under- AND over- estimated his comprehension of situations.

I'd been doing my best to prepare him: writing social stories, reading Arthur Goes to Camp together. The whole ride up I talked about how long a week was, reminded him I'd be leaving him but would definitely, no matter what, be back to pick him up the next Sunday.

We had arrived at camp just in time for the opening ceremony, and as we sat together through the songs and heartfelt, cheery welcomes, Jake turned to me every few minutes and asked "Are you leaving now, Mom?" So, yeah, I guess that part had sunk in.

You know you're at ASD camp when someone stands in front of the group to introduce himself "Hi, I'm Dan..." and a voice from the peanut gallery pipes up "You're short!" Luckily Dan had a sense of humor and we all laughed.

You also know you're at a special needs camp when there are large kids screaming and crying and carrying on about separating from their parents. My heart went out to those kids and moms while I secretly thanked every supreme being I'd ever heard of that it wasn't MY kid.

Jake was amazing, giving me a warm hug and kiss and saying goodbye... and then going off with the group, like he did that every day. He never ceases to surprise me.

Ethan was nervous about fitting in, but as he's at camp with three good friends, I'm sure he's having a great time. And even if he's miserable, it's only five days, right?

On Friday morning I leave early (6 AM wake-up again. SIGH.) to go fetch Ethan. And he'll have a day with me, Jacob-free, which should please him immensely. And then Sunday we drive up to get Jake, and then it's full-time family time once again. For the two more weeks until school begins.

The moment I see their faces once again, I know how much I've missed them will come flooding over me, and I'll try not to embarrass them too much with my tears and kisses.

Within hours of their being home, I know these five child-free days will seem like a fever dream, a distant memory... like lazy Sunday mornings, or having a waist.

But for now I'm going to try to lay the strangeness and anxieties aside, and milk this time dry. Go to the movies - spontaneously! Eat something Ethan loves - and NOT have to share it with him. Shout something to my husband from one room to the next in the late evening and not worry about waking a sleeping child. Sleep naked. Step out at midnight, just to look at the moon and the stars.

Glorious.



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Blog Gems at Summer's End

Can you believe a whole fortnight has passed since the last Blog Gems - Air Your Archives link-up? Me neither. What has happened to TIME this summer?

We've been so busy vacationing and preparing for vacationing (so much work I need a vacation from THAT) and this year for the FIRST TIME preparing to send the boys off to a week of sleep-away summer camp (sob, my baaaaabies, sob). Ethan is going with friends, and Jake is going to a special ASD camp where we hope he will find friends.

So while we are off depositing our kids in different states today, you....

Come! link up! Tell all your friends! I promised my friend Jen her lovely linky meme would be alive and well when she brings it back home to her blog, The King and Eye, some time in the fall (or whenever she's ready). So don't make a liar out of me.

This is what Jen says about Blog Gems:
How many posts do you have languishing in your archives? Great posts that will never be dusted off and brought out to breathe again! Maybe you created fabulous content before you had lots of followers, or maybe you have been blogging for years and your current followers haven't seen your older material.

Blog Gems - Air Your Archives is a fortnightly linky list where we will give a prompt and you select a post from your archives that fits the prompt. You do not have to create content for the prompt, unless you want to. All you have to do is copy and paste the url of the post into the linky list. Voila, an old post gets a second shot!

To take part:

1. Follow MY blog for now (and Jen's blog once I hand her back the reins) to get future Blog Gem posting information and linkys.

2. Grab the Blog Gem button and place it on your sidebar (html code here). Putting the button on your blog is not a deal-breaker, some people just don't like doing it and I have no problem with that at all. What I will say is that something like this can't be successful without 'word of mouth' so I would appreciate if you could find another way to let people know that this is available and they are welcome to join in.

3. Enter your link.

4. Read and comment on the submissions of the two blogs posted before you on the linky list. (Please!)

5. Help spread the word by telling your blogging friends, either by tweeting this or blogging about your entry.

And here's what I have to add:
It's a wonderful chance to get fresh eyeballs on your great posts from the past. People tend to put in recent posts because they're freshly in our radar, but I would encourage rooting around in your archive and dredging stuff up that's deeply buried, if you can.

The rule is that you're supposed to select a post from your archives that fits the prompt... but, being the generous, kind-hearted person that Jen is, it's a lenient rule. She states: "Broad interpretations of the prompt are encouraged so this could be a good chance to be creative!"

And now the theme (you may have guessed it)... as I'm currently wallowing in end-of-summer bittersweetness and nostalgia, full of feelings as my boys are about to go off to camp alone for the first time in our lives, this week's prompt is: Endings and Transitions 

Endings and Transitions... things that are over or about to be over... changing over to a new regime, or just the little daily transitions (that some of us have such trouble with). Take this as large or small as you want to go... the end of a day, a relationship, an era. Personal or political... macro or micro... happy or sad (or some of each)... have fun!

Ready? Good. Go link up!

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Five Months of Special Needs Sibling Saturdays

Today, I have no guest. Due to the craziness of our lives as special needs parents, I developed a hole in the SNSS guest post schedule. When this has happened before, (and it has) I was able to shuffle the schedule around or beg a speedy post from a kind and accommodating blogger.

But this week, I just couldn't do the hustle and scramble involved in that. Between being deep in summertime kid-ville and swamped by the job of getting the kids packed to go off to (first time!) sleep-away camp for a week tomorrow, I am slammed.

I decided this was the perfect opportunity for a look backwards, a chance to call attention to some wonderful earlier posts that some of you may have missed.

(Hey if every TV show on the planet can do a "clip-reel" episode and recycle their old shows, why not SNSS?)

So, this series has been running for five months now, and there have been twenty one Special Needs Sibling Saturday Guest Posts, plus my introduction to the series, Coming Soon: Special Needs Sibling Saturdays.

These are amazing, awesome posts here, and I am honored to have hosted them all.  Some will make you laugh and some will make you cry. But all will touch you.

Come read, and if you've already read them all, come reread the ones that really spoke to you. We'll be back with a new post next week (and from the amazing Shell of Things I Can't Say). Until then? Read and enjoy.

I thought it might be useful to lay them out by category, to help folks find posts that might be specifically of interest to them. (Note: some posts may be listed more than once if they belong in multiple categories.)

The Special Needs Sibling Saturdays Guest Posts, so far:

The (Awesome) Autism Moms:  
My Brother, My Brother 
     by Alysia Butler of Try Defying Gravity
Cat Dancing 
     by Jillsmo of Yeah. Good Times.
When It's More Than Sibling Rivalry 
     by Jen Troester of Living Life, with a Side of Autism
Our Social Skills Group is 24/7
       by Jean Winegardner (a.k.a. Stimey) of Stimeyland  
Brotherly Love with a Side of Autism 
     by Jean Myles of Mommy to Two Boys  
Our Shopping Cart
       by Jessica of four plus an angel
Sibling Saplings
     by Spectrummy Mummy of Spectrummy Mummy  
Sisters
      by Jess of a diary of a mom 
Brothers and Sisters: The Next Generation 
     by Jennie B. of Anybody Want a Peanut?  
Special to the Fourth Power 
     by stark. raving. mad. mommy of stark. raving. mad. mommy
Siblings – The Best Therapy
   by Julie Cole of The Baby Machine  
Happy to Be in the Middle 
     by Jen of The King and Eye  
A Family Mosaic 
     by Mama Apples of Apples and Autobots  
Unusual is not the word!
     by Blue Sky of Looking for Blue Sky
When a Brother's Love Hurts 
     by Gina of Special Happens  

The Dads:  
Siblings and the LD Person
       by Peter Flom of I am learning disabled
Sister Knows Best
      by Big Daddy of Big Daddy Autism  

The Siblings:  
Siblings and the LD Person
       by Peter Flom of I am learning disabled
I am the Sister 
     by ababynanny of Hand in Hand in Lala Land  

Kids with Psychiatric Disorders:
Driving In the Wrong Direction
     by Adrienne Jones of No Points for Style 
Special Needs Squared
    by Julia Roberts of Kidneys and Eyes  

Kids with Epilepsy / Seizure Disorders:
Hilarity and the Mermaid’s Brothers 
     by Elizabeth Aquino of a moon, worn as if it had been a shell  

Kids with Genetic Disorders:
Special Needs Squared
   by Julia Roberts of Kidneys and Eyes  

Kids with Cerebral Palsy:  
Unusual is not the word!
   by Blue Sky of Looking for Blue Sky  

Complicated kids with multiple diagnoses:
Driving In the Wrong Direction
   by Adrienne Jones of No Points for Style  
 Special Needs Squared
   by Julia Roberts of Kidneys and Eyes  
When a Brother's Love Hurts 
     by Gina of Special Happens  

Very complex families - multiple kids with Special Needs:
Special to the Fourth Power 
     by stark. raving. mad. mommy of stark. raving. mad. mommy  
Special Needs Squared
     by Julia Roberts of Kidneys and Eyes  
A Family Mosaic     
    by Mama Apples of Apples and Autobots  
Unusual is not the word!
   by Blue Sky of Looking for Blue Sky
 

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Superheroes all.

And also?

Ordinary mothers, fathers, sisters, brothers; telling their stories, sharing their lives.

Thank you.



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Written on Bathroom Walls

Sometimes? A small truth is where you least expect to find it. This was found a few weeks ago in the bathroom of the Hungarian Pastry Shop in Morningside Heights in New York City. The walls are usually covered with graffiti (it's a popular hang-out for the Columbia University crowd), but about once a year they repaint to give a clean slate to the bathroom philosophers.
 
Want to see it closer up?

And I agree. I so agree.

I have a million things to say, but no time to write right now, so I thought I'd let someone else's found words do it for me today.

Also? I DO have a BlogHer11 post coming out - at least two, in fact. But the fact that I am a slow blogger (see last year's very late The BlogHer10 reflections of a very. slow. newbie. blogger), AND that I was away with my family for days without decent internet access, AND that I am a ruminator, that I often need time (and sometimes a LOT of it) to digest things before I'm ready to comment?

Means those posts are still cooking. I'm seasoning & stirring the soup for sure, just not ready to serve it yet. I do sincerely PROMISE they're coming soon.

But until then? Just to tease a a bit and because it fits with the theme here (and to prove that I actually WAS at BlogHer this year)...

Here's this year's picture of me with Jenny, The Bloggess at the People's Party in the bathroom they built for her INSIDE the party room.

Forgive the poor quality - this was taken on my phone which is an early droid model with no light. And Jenny is MUCH more beautiful than this (see last year's picture in this post), it's just the only shot I've got so I'm using it (forgive me Jenny, OK?)

Also while you're waiting for my BlogHer post? Read this lovely one by my friend Stacey.


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Missing my Father

Mom and Dad, summer vacation 1973

It comes up at odd times, this missing my Dad, now dead almost a year and a half. We're on vacation this week (hence the quiet blog) back at the in-laws house in the Berkshires (thanks, Jim and Pat!) and so there's that back-again-in-a-place-we've-been-year-after-year quality to everything here.

Last year my husband had to leave us on our own for most of the vacation to go attend to his ill, soon-to-die mother. Last year I was still raw and newly grieving my father, still recovering from the harrowing end. This year we carry two newish ghosts with us.

A year and a half is a long enough time that I no longer think of my father daily. He is fading from the front of my consciousness much the way he faded from his own life in his last few years. But some times, some places bring him back into sharp focus for me, the tang of missing sharp and immediate again.

At the end, though he was still alive, the ill, dying father was so present, dominating my life completely for the last five or so months of his, that the other man, my wonderful, wonderfully alive father was eclipsed, all but lost to me. I called him up to write my eulogy, but still, for a long time spontaneous thoughts of father brought up a husk of a man, lost inside his own mind, howling in senseless pain, needing to move on but still somehow stuck in his near useless body.

Now that the memories of those last, dreadful months are thankfully fading, I am finding myself bombarded at moments with visions of the father I knew and loved for my many years. It's a new phase of grieving I suppose, and also, I believe I am feeling my way into the relationship I will have with my father - my memory-father - for the rest of my life.

The Berkshires are a place I had been with my parents a few times in our lives. Also, most notably, they hold an important place in my family mythos: my parents met at The Music Inn in Stockbridge one summer, 53 years ago.

Also, summer vacations were important times for my family, full of happy memories for me, of time enjoyably spent with my hard working parents, having tremendous fun together.

Whatever the reason, my father is very present with me on this trip. We pass a sign on a building, nearly daily as we drive about Great Barrington: "Caligari & Sons Construction" and every time I hear my father's voice in my head making a joke about what strange kind of cabinets they would build.

We drive up the road to my old childhood camp (where I went only one summer, but was wonderful and transformative for me nonetheless) to deliver paperwork for Jacob's upcoming week away, and I am flooded with memories of my parents coming to visit on Visitors Day.

We go to dinner at a local tavern (burgers and fries for the kids, what a surprise) and there is an old man sitting with his family at a booth across the room. I keep looking up, seeing him, and for a moment thinking it's my father, and the next moment feeling the sharp tap just above my heart that reminds me it can't be, not ever again.

Hello, Dad. It's nice to have you with me again, if only in memory. Mom misses you something fierce, every day. I carry your sense of humor, your delight in the absurd and unusual, about with me every day of my life.

Becoming a parent has taught me much about how apples don't fall far from trees. I'm glad you were my tree, Dad. Very glad, indeed.

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


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SOC Sunday: Colorblind

Today's SOC Sunday was inspired by another post that I read today, a really important one, this one, here: This Is Not Really About Cake

In it, Mocha Momma calls upon the bloggosphere to be brave and talk about race in a real and substantial way. Please go read that post. (And down into the comments, the one from Suebob, it's brilliant.)

This deserves more than a quick SOC Sunday post from me, and it will get one one day. But also one of the things that holds me back from writing about race is my tendency to over-think things. And the more important they are, the more so this tendency.

Race is such a hot topic, as in potentially dynamite. It is a touchstone. I want so much to not make mistakes in this sensitive area, to never, ever hurt anyone's feelings. And so caution makes me timid, which I abhorr.

So I'm going to just open up here on the first thing that came to mind as I thought: What can I say about this? My story is a bit off the center, but it's what I can bring today.

Soon I will delve deeper, into the swirling mess of contradictory notions that stream through my head when I start to try to untangle all my thoughts and feelings on race. There are clearly more posts here, and I won't let them die in my head for fear of exposing myself.

Because what we don't talk about festers under the surface, unless exposed to fresh air and sunshine. Or moonlight. So, here is a start...

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One of the many reasons I've been thinking about race lately is that Jake keeps bringing it up. Well, not exactly. He brings up the color of people's skin, but to him that has nothing to do with race, he has no notion of race -- an abstract concept if ever there was one.

One of the things I admire most about my son Jacob, one of the ways his autism is a gift, is his colorblindness. He doesn't see white people, brown people; Asian people, Latino people... he sees... people.

Or rather, he sees the different colors we come in and to him it is merely color -  a favorite topic these days:  Eye, hair and skin color differences are all just ... interesting to him for their visual component. There is absolutely NO value that is attached to any of these differences, no preconceived notions, no expectations that go along with the color of a person's skin or the texture of their hair to my son.

And he is very conversational these days, and very observant, so while we are out and about on the streets of New York City - where people always come in every size, shape, age and color - he wants to talk about the people he sees... So I end up having very public discussions with Jacob about race.

"What color is his skin, mommy?" Jake will ask in his too loud voice about a man standing in front of us on line. And I have learned to not flinch, to answer, matter of factly, the question asked, knowing there is no judgment in the slightest little way behind it, just... observation and conversation.

"His is skin is brown, Jake" I'll say, "And isn't it wonderful that people come in so many different beautiful shades of beige, tan and brown?" Truthfully, that latter part is probably more for the people who might be listening than for Jacob, because he already knows all this, instinctively.

Jacob has warm feelings towards nearly everybody he sees. He does not parse into "like me" and "not like me."  I wish I could be more like him.

I will never succeed, having lived in the world too long as a white person, knowing what that means, the automatic below-the-conscious-unless-I-work-to-be-aware level of privilege that wraps me in, that I bring with me everywhere just because of where the ball landed in my genetic roulette spin.

But Jacob? He is free of this. His classmates are generally more brown than white, his teachers have often been too. To him, this, his world is just an interesting rainbow of shades. He talks about skin color the same way he talks about eye color, hair color or the color of someone's shirt. Exactly the same. Observationally.
 
People say we learn from our children, but when they have special needs there is a tendency to forget this, to get so, so stuck in "teaching them" mode that we forget they can have important lessons for us, too, can be *our* leaders. This is something I hope Jacob can teach me, to bring me into his colorblindness.

He declares that he and I are pinkish beige (and we are). We talk about how humans are not ever purple or green. And always: "You know that while we are different on the outside, we're all the same on the inside, human." But again, I don't need to tell him that.

He knows. My son, the autistic one, he gets it.

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OK, I must confess this was NOT a true stream of consciousness post. I went way over time, I went back and edited it. A lot (because this topic seemed too important for sloppy and unclear writing). But it came out of the free writing I did this morning on race, attempting to do a SOC Sunday post, so I still want to let it stand here, link it up. (I don't think Fadra will mind, right? Especially since I fessed up?)

Next time, I promise: true random brain dump, unedited (watch out, world!)

Also, please, bloggers who are reading this? I know you think about race, too. Join in the discussion. Write your own post exploring how race affects your life. Let's keep this dialogue going....

New to SOCS?  It’s five minutes of your time and a brain dump.  Want to try it?  Here are the rules…

• Set a timer and write for 5 minutes only.
• Write an intro to the post if you want but don’t edit the post. No proofreading or spell-checking. This is writing in the raw.

You can do it, too!  Click on the picture link and let's hear your 5 minutes of brilliance...

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SNSS: When a Brother's Love Hurts

Today's SNSS guest is the lovely Gina St. Aubin of Special Happens. If anyone would know that it does? It is Gina. She has a busy family with three children, with her eldest, J being multiply challenged. 

I mean multiply: Cerebral Palsy, Autism, Sensory Processing Disorder, and, most devastatingly, Landau-Kleffner Syndrome (LKS), a rare epileptic disorder. As part of this last, J experiences a severe sleep disturbance in that he does. not. sleep. Hardly ever.

And then Gina has a three year old son and a four year old daughter to care for as well. (Are you getting tired just reading this? I am.)

All this, and Gina still finds the time, energy and fortitude to be an advocate for special needs children, parents and families. She champions our children. She is inspiring to read.

And yet, she also has her struggles, her soul's midnights. And that is where she has come from to write this post she shares with us today.

Some SNSS posts are heartwarming and light, celebrating brotherly or sisterly love. This is not one of them. This one is about that stuff that hits the fan. 

It breaks my heart to read, and also I nod, knowingly, understanding because, well, I do.

So come, read the story Gina has brought, here:   

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When a Brother's Love Hurts - by Gina St. Aubin

“Mommy! J is hitting meeeeee!” B pleads.

“Mooom, J bite me!” B says angrily.

“STOP J!”  enforces B as strongly as he can before J goes back for more.

“MOM! J won’t stop hitting me. He kick me.  MOOOOOOOOOOOOM!”....

I watch B and worry, heart aching for all that he’s enduring, the likelihood of just how this is shaping him…

He is caring, sharing, kind, funny and gentle, yet can be rough and tumble.  He loves who he loves, will follow in your lead but stand firm when you’re turning down a path he is adamant not to trend.  Strong, brave, lighthearted... breakable.

This three year old endures the strikes. The torments. The kicks, pulls, pushes, strains, bites. Slaps upon the head. All he absorbs, he does so with tears.

Cries for help. Pleas for someone to make it all stop; though there are times I come to find that he’s enduring without the tears. Silently turning to huddle inward, protecting what he can until the tormentor moves on….

He just wants to play with his brother. His brother, 8, has Autism. His brother who is his tormentor... and his playmate; the boy he looks up to, enjoys, loves so fully.

He seems to hold onto the times they have fun, laughing and squealing like the best of friends. Play for chunks of time where no injuries are received, where no pain is felt, and only the laughter of childhood friends fill the room.

I love these times. They remind me that J is ‘normal’ in many ways. He still wants to have some of the many interactions that a NT child wants. He still is a sibling, still has sibling rivalry.

These times also remind me also that his siblings see him for who he is rather than a person ravaged daily with epilepsy along with climbing the daily mountains of autism and more.  These times are the times I see our family as it would be if things weren’t as they are.  Yet still I measure the actions, the sounds, the level of laughter or energy, or excitement.  Because of... well... the OTHER times...

The first I thing I should tell you is that these aren’t ‘beatings’ (don’t call a caseworker, no serious injuries have ever been received), they ARE NOT extremely forceful exhibits of hostility so much as excitement drawn out in less-than-soft swings filled with a lack of impulse control.

But, it is my three year old getting hurt by my 8 year old. It is my NT child being hurt by my severely NOT NT child.  It is tearing me up inside just as much as it’s impressing upon him.

I’m torn with duties, with raising and guiding my kids to be independent, strong, self-confident beings able to run and wreak havoc on the world.  I can’t watch the kids every second of the day, without decidedly never making them a meal.

Going to the bathroom, folding laundry or even picking up a toy in the next room simply leaves too much time for altercations to occur, yet I still want to foster a good sibling relationship. I try to allow room for them to work things out and negotiate with one another, becoming the people they will become in the future, with experiences and understanding of relationships under their belt... while keeping them safe.  That’s my primary duty... keeping them safe.

So, I worry about him... my B.  My three year old with a heart of gold. He loves his brother with more love than I knew a sibling’s heart could hold - but, is he learning to succumb to the abuses of others?

Will he become a victim? Am I teaching him to stand up for himself by coming to his rescue and then giving him the words and actions to keep himself safe?  Will he be strong?  Will they keep their relationship of loving brothers? Will his innocence be smashed?

Am I keeping him safe?

I’m trying... I come to the rescue. I come running, often. I hurt often, hearing his cries.  I wonder... how much is J’s hurting him... hurting him!?!?

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This is a brave, brave post for Gina to write. It is so hard to talk about the things we don't have answers for, only questions upon questions.

It's hard and brave to write about fears, about those bone-chilling places where we worry that our best just isn't good enough, and harm is coming to our children. Mostly we slap rosy paint over this stuff, or try to hide it away in our brain's back closet.
 
So I applaud you, Gina for voicing the secret thoughts so many of us have and are afraid to speak of, for fear of being judged, by our own selves and others. Thank you. Truly, thank you.

And now that you have read Gina here, please follow her home to her blog, Special Happens, where she is creating a wonderful space for connection and communication about special needs parenting. 

Start with this post, about what autism means to her, and then maybe this one, and this one, about being the parent of a special needs child. Or, for a lighter moment, this one about how a snow day began, last winter.   

Besides writing on her own blog, Gina is a regular contributor at the 5 Minutes for Special Needs site, among others. Finally, you should follow Gina on Twitter, and go "like" her on her Facebook page, joining her awesome community.

And once again, thank you so much, Gina, for your candor and honesty. I am honored to host your words here today.


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My One Year Anniversary as a Hopeful Parent

Not only is today the 10th of the month, but it also happens to be my birthday. (51. Thank you.)

This is not a coincidence, a happy accident. It is also my one year anniversary of posting for Hopeful Parents, my 13th post over there.  Last year I had asked to begin on the 10th of August, thought to commemorate my 50th birthday with my first Hopeful Parents post.

What I had failed to calculate was that this meant that every year I will now have a post due on my birthday. So be it; it's a great chance for reflection, looking back over the landscape of the year just flown by.

So what has changed in a year? Mostly that the new school I had so hoped would be good for Jacob turned out to be wonderful beyond our wildest dreams, a great place for him to grow and learn.

Jake still does not yet have a friend. But we're working on that, have high hopes for the coming school year.

But besides all of Jacob's wonderful developments? It is also true that my son grows both older and stranger, adolescence looming a few heartbeats away.

I've been reading a lot of posts from friends lately about their slightly older autistic kids entering new stages of meltdowns and more, and frankly, it's got me a bit spooked.

So come read me over at Hopeful Parents today as I contemplate some Cautionary Tales.

See you back here tomorrow.



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It's (almost) my Birthday, and I'll post if I want to

My birthday is tomorrow, the 10th, but as I'm posting this so late at night, well, by the time you read it, it most certainly WILL be my birthday.

I can't really put up a birthday post on the 10th because that's my Hopeful Parents posting day, so all you will find on the 10th is my jumper post leading you to read me on the Hopeful Parents site. (Note to self: WRITE the damn HP post already, OK?)

And so I am posting though I don't have much to say. Or rather I have so much to say that it is an amorphous swirl in my brain, not coalescing into anything near brilliance anytime soon. And so I'm breaking all the rules here. Handing you a ruminating ramble today. Because it's (nearly) my birthday and I can do what I want to, right?

I am SUPPOSED to put up my fabu BlogHer11 recap post by today, or certainly tomorrow (not gonna happen) and I have also been told it is imperative to have something really wonderful, a strong post I'd prepared in advance to slap up on the old blog to wow folks that I met at the conference who are coming by to visit for the first time (also, clearly not happening).

What I am, mostly, right now, is a (by the time you're reading tihs) 51 year-old woman who is tired. Really really tired. Bone weary tired.

The BlogHer conference was wonderful and strange and so different from my day-to-day existance that now that I'm back in the thick of things it feels like a dream. One of those powerful dreams you mull over the next day in your waking state and want to write down the details of upon awakening so as not to lose the lessons therein; but a dream, nonetheless.

For four days I didn't have to think about what other people were wearing or eating or their bathroom habits. OK, maybe I had to THINK about it, as I did have 2 (wonderful) roommates who DID want me to eat with them and consult on outfits and we DID have to negotiate our showers so as to all be able to be on time. But I wasn't RESPONSIBLE for any of that for anyone but me.

So for four days I was off the hook of mothering responsibilities. And It. Was. Glorious. I could have been at the worst conference in the world, and I would have still been in heaven. But instead I was at a pretty terrific one. With some great people. In San Diego. California. On the West Coast. For the first time in nine years.

I love being a mother. I wouldn't trade that job in for anything. But it IS relentless and wearing me out sometimes. Especially the whole autism thing. I needed a break. And I didn't know how much I needed a break until I had one.

The problem is, this was a very busy, very intense break. And while it cleared my mind, it was four days of WORK in so many ways. Four days of being "on" all the time.

And so I came back needing a bit of rest, some down time, and instead found myself thrown back into full time mothering, as Ethan was already DONE with camp, and Jake's summer school ended with a half day today. And there is now a MONTH before the kids go back to school.

Yes, I said a month, because New York City has not fallen into lockstep with most of the rest of the nation and started sometime in August. A few days after Labor day it is then.

We'll be making the most of it, having fun in the city, trying to escape as often as we can. But still, looking down the barrel of a whole month is daunting. Especially when the kids don't get along. And they don't.

But I don't want to end this post on a whine, on a complaint, on the downside.

So I will say this: 51 years on this planet and most days I am still happy to greet the new day, eager to discover what it has in store for me.

I want my life to be like the Tardis, bigger on the inside, with ever expanding rooms for whatever I need. Like in one of those wonderful dreams where you go through a passageway to discover a whole new wing in your apartment you hadn't know existed before.

Some doors potentially opened at this conference, and I am looking forward to stepping through, walking into new territory, reclaiming parts of myself that are more than "just" Mom.

Because 51 is not too old to learn new tricks and I've got years ahead of me (hopefully) to dance on into. Anybody want to Rumba?



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Blog Gems Rolls On!

Oh, my, I can barely move my body after BlogHer, but it's time, and I'm the summer guest host for the Blog Gems - Air Your Archives fortnightly link-up, so here we go....

Come! link up! Tell all your friends! I promised Jen it would be alive and well when she brings it back home to her blog The King and Eye. in the fall (or whenever she's ready) So don't make a liar out of me.

This is what Jen says about Blog Gems:
How many posts do you have languishing in your archives? Great posts that will never be dusted off and brought out to breathe again! Maybe you created fabulous content before you had lots of followers, or maybe you have been blogging for years and your current followers haven't seen your older material.

Blog Gems - Air Your Archives is a fortnightly linky list where we will give a prompt and you select a post from your archives that fits the prompt. You do not have to create content for the prompt, unless you want to. All you have to do is copy and paste the url of the post into the linky list. Voila, an old post gets a second shot!

To take part:

1. Follow MY blog for now (and Jen's blog once I hand her back the reins) to get future Blog Gem posting information and linkys.

2. Grab the Blog Gem button and place it on your sidebar (html code here). Putting the button on your blog is not a deal-breaker, some people just don't like doing it and I have no problem with that at all. What I will say is that something like this can't be successful without 'word of mouth' so I would appreciate if you could find another way to let people know that this is available and they are welcome to join in.

3. Enter your link.

4. Read and comment on the submissions of the two blogs posted before you on the linky list. (Please!)

5. Help spread the word by telling your blogging friends, either by tweeting this or blogging about your entry.

And here's what I have to add:

It's a wonderful chance to get fresh eyeballs on your great posts from the past.

The rule is that you're supposed to select a post from your archives that fits the prompt... but, being the generous, kind-hearted person that Jen is, it's a lenient rule. She states: "Broad interpretations of the prompt are encouraged so this could be a good chance to be creative!"

And, as I've just spent 3 days hugging and being hugged by my bloggy brethren, this week's prompt is: Community. 

Community, connection and support; your tribe, blogging or otherwise. This week, look around in your archives and find an old post about your "community" (or lack thereof).

Ready? Good. Jump in the pool aaaaaand link up!

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