A Mommy Blog About Raising Men, Not Boys.

Wednesday, July 27, 2011

You Can Do Anything

See that girl in the pink helmet? That's one of my favorite people on the planet circa 1987.

It's a short list of people, despite how much I rave about folk. The actual list of my FAVORITE people on the planet is short. It's carved by time, and pain, and heartache, and love. It's carved in stone that won't erode.

I met Eileen when I moved to the city, she was my first friend in a new place. She spent the night with me, and I instantly loved her. She was funny. She was smart. She was bolder than me and I felt safe with her, but also brave because of her. Eileen was FEARSOME. Once, in high school she got into a horrible fight with Simon (everyone from my high school just nodded cuz they know this story) during lunch, and those of us who had spectated had to return to class late from lunch which was pretty much punishable by death.

We walked into the classroom behind the shield of Eileen's rage and fury, and the teacher who might normally have smeared our hearts on the blackboard simply nodded as we sat down quietly. You didn't fuck with Eileen.

She was also generous, trustworthy and overwhemingly caring. Once, I was late for a speech meet (yeah I was on the speech team, you didn't get it yet - I'm a GEEK), and I straggled onto the school bus at 6:30 in my PJs with a bag of makeup,clothes and toiletries to get ready on the way. I leaned back on the bus seat, closed my eyes and Eileen painstakingly did my makeup that my sleepy self couldn't muster the will. She did my hair too, and when I opened my eyes, every guy on the bus was watching us.

"That's the hottest thing I've ever seen," one of them remarked.

I guess they didn't get out much.

Well it's 20 odd years later.

Our lives are different. I've got 4 kids and am married and I've got autistic kids and my life is chaos.

Eileen has MS.

Her life is hell.

Except, it's not.

Do you see this beautiful, vibrant woman? She can't get out of bed a lot of days. She gets restricted to a wheelchair a lot it seems from her face book. All the time? I don't think so.

She lives on the other side of the country from me and this is what I've learned, after delving back into her life via facebook:

She's my touchstone. Not the sort that you that you use to give thanks that your shit isn't that bad. That, in my opinion, is sort of a bullshit way to belittle other people's struggles. Phew! Glad that doesn't happen to ME! It's all about me!

No, instead, I look at Eileen's pics and her posts, and I see my friend. I see a person who finds JOY in the things of this world that are given her. It's not that she doesn't have bad days, and cry and rage and be angry that her life went differently than she ever thought it would. But instead, she finds her joy.

She finds things to be thankful for. She got a new shower chair - and facebooked her joy at how luxurious it was going to be. At first I cried for her - but then, I realized how self serving those tears were. Because - she was for real. That shower chair was going to be a huge luxury. A comfy place to safely sit while she slathered on delicious smells, to make her soul calm and her aching muscles soothed.

It started making me think. What's my shower chair? What's my thing, that to me, is a deep sigh of relief, of joy, of pleasure? Is it clean sheets? Is it the smell of shampoo on my children's hair?

Eileen might have physical struggles, but from where I sit, she has perfected the soul.

I love you Eileen. And I miss you every day.

Plus, you took the coolest picture I ever saw.

PS I stole all these pics off her FACEBOOK. She just has to love me anyway.

Tuesday, July 26, 2011

Aspergers? I Wish We Had Aspergers...

Ok that's a wild statement and also untrue.

I don't wish we had Asperger's Syndrome around here.

It gets old though, as increasingly it seems that every time I tell someone my sons are severely autistic someone will pull some Asperger's person out of their ass and compare them to my sons.

Them:"Oh my friend's cousin's son has Asperbergers and he has a hard time making friends."

Me:"Really? Cuz my twins are seven and don't talk and wear diapers. Oh and they don't understand the concept of friends. So yes, I can see that it's exactly the same. Your friend's cousin's son should hang out with us."

It's really never the actually people with Asperger's or immediate family who are afflicted, who pull statements like that out. It's the people who see Aspererger's on TV and think that is what Autism IS.

Asperger's might be autism but autism is not Asperger's.

I'm ranty. It's because I'm tired and hot. It's also because I just sat next to these people who eyeballed the twins a couple of weeks ago with disgust like we are bad parents. I didn't pull out the autism card on them. I just let it go. Judge away.

But back to my point. It's this. They call Autism and it's many many many manifestations "The Spectrum". Ever wonder why?

I'm here to explain. I'm feeling helpful.

It's because autism isn't ONE thing. It's not like Strep which can be defined and looked at under a microscope (ok that's kind of untrue they are finding some genetic markers but that's a different subject). Autism is simply, a whole bunch of various kinds of developmental delay all lumped together.

At one end of the rainbow - you've got those "classic" autism kids you remember from days of yore. Staring at the wall, not communicating, rocking whatever. They LOOK fine but they are NOT. That's the worst case. We're not that bad. /me knocks on wood.

At the other end - are the "High Functioning" autistics - of which the Asperger Folks are part. They talk. They have relationships. Many go to "regular" schools but have social challenges. But developmentally - they're like astronauts compared to my boys.

I have a 15 month old baby girl. I am watching her quest for language, her thirst for it, out pace theirs. Within the next year she'll be talking. Hell within the next six months she'll talk more than they do. She already TRIES to communicate more than they do.

Media is partly to blame. Cuz kids who say "OPEN THE MOUTH" over and over for two hours after having been told to do so at dinner are not as TV appealing as say, the dude from American Idol. But, I'm here to tell you.....

some of us, would give anything, if all it was, was Asperger's.

Wednesday, July 13, 2011

3 Years Later

We celebrated 3 years in our house with a family swim in our pool the other night.

We didn't know what the hell we were doing. We bought a house. I didn't have a job. He didn't have a job. We had two special needs kids. But we signed on the dotted line. Because we believed we'd figure it out.

There was no little girl nor one on the horizon.

As we swam under the looming Georgia pines of our forest, I couldn't really help but think, this really IS our house. This is the one we were supposed to have.

I like it here, despite myself.

Monday, July 11, 2011

WooshStuh WooshStuh

Last night at bed time, I read one book plus Goodnight Moon as is our tradition (ok on late or hectic night's it's just Goodnight Moon). I said goodnight and gave kisses and then something happened.

Charlie said "WoooshStuh Wooostuh!" and got out of bed and drug me to the closet where the books are.

He pushed my hand up toward where the "good" books are, the books we keep out of reach of two little boys who tear up books accidentally on a regular basis.

"WoooshStuh WoooshStuh!!!" he smiled.

For the first time in seven years, Charlie was asking for a book. A SPECIFIC book.

Ten Wishing Stars.

A birthday or Christmas gift years ago from Uncles Tim and Justin, it's always been a favorite because it's a count down to sleepy time. Recently Charlie has been excited to say the numbers as we read it. But he's never ASKED for it.

I took the book and went over to the bottom bunk and both twins came over close to hear.

And so I read it, "High above the flock at night..."

"TEN!" said Charlie.

"...wishing stars, shine so bright."

Who knew he had a favorite book?

Sunday, July 10, 2011

Art Smart

We like to go to museums. I think it's one of the few habits the husband and I have leftover from childless days (the BEFORE times). I used to have friends who'd use as a social calendar for events and festivals. They just had to know where we were going, to know what was going on that weekend.
I won't lie, we slowed way down 4 kids and 13 years later. Zero kids meant we were never home. 1 kid meant we were rarely home. 3 kids meant we were sometimes home. 4 kids means we're sometimes NOT home.

I guess we still get out a lot. It's so good for the kids though.

The oldest boy's teachers always comments about how much he KNOWS, that he's got a story and a point of reference when they are teaching events. So I think even though sometimes he's being 8 and rolling his eyes he's absorbing.
And the twins?

Sometimes they act nuts. But mostly they don't. We've always gone and taken them places. I'd say it's routine but it's not. Each museum has it's idiosyncrasies and oddities so it's not some autism routine that we fall in to.

Yeah, he's picking his nose right? That's a normal kid thing to do. I totally embrace it.

These are pics from the Booth Museum and it's one of our favorite once or twice a year haunts. It's a cowboys and indians museums, with lots of great sculpture and even tons of movie poster art.

One of the things I love, and love teaching the oldest boy, is how art is part of pop culture even though it's transparent to us in a lot of ways if we aren't paying attention. The Booth museum has several pieces where they show you the artwork that was used for old west novel covers. They also show you with movie posters, the original artwork and the finished product.

But I think my kids favorite part is the interactive play place in the basement where we can make believe lots of old west fun.

It's kind of fun just let them run around and watch them play. Plus I think it's a good balance after having had to be good for SO LONG upstairs.

We hit the Booth back over 4th of July weekend. If you are ever in the Atlanta area I highly recommend it, it's a lot of fun.

I can get an 8 year old boy to play make believe there. It must be cool.

Wednesday, July 06, 2011

I Don't Want To Be Your Daily Autism Blog...Or Do I?

I was talking to Sarah today, and we were talking about Erin. We were talking about her White House trip and we were talking about how she's doing and I was hoping she had a really good trip, saying I thought she needed it - just for her MIND.
As we got to talking, talk wandered the way it does whenever anyone working through any kind of disability....to the twins.
Now, I am the one who went there. It's all me. Sarah didn't. She hasn't seen the twins since they were two. She doesn't really even know what they are like now, just what she reads.
So - I kind of shared with her that I really only blog the good stuff.
Because if I blogged the struggles, the challenges, all the ridiculous shit that makes the husband and I want to bash our heads in the wall....well, I'd never ever stop writing.
Right now, one is spinning a baby toy with a rattle thing on it as hard as he can. He's bashing it against the mini-fridge here in the computer room.
He likes both spinning and making noise.
The other one is sort of hopping from one foot to the other, doing that clap thing that special ed kids seem to do where they flap more than clap.

This is real time blogging of autism happening.

I'm sitting here typing and ignoring it.

If they needed something, I'd stop typing and take care of it. If one of them wanted a snuggle or a hug or a kiss, I'd stop typing and give it. But they don't right now so I'm typing faster trying to wrap it up.

I guess I'm wondering, do I define myself too much, paint too tragic a picture if I really let you in? Sometimes I'm all about letting you in but mostly I'm not. Because I don't want to be seen as ONLY the parent of autistic children. I don't want to be ONLY anything.

But maybe I'm not being fair. Maybe I know stuff you don't know. Maybe someone else would feel better knowing they aren't the only one with seven year olds in diapers.

I don't know what to think.

Monday, July 04, 2011

Today I've Done Something Right

My day started with a quest to make these cupcakes for the 4th.
Having some sort of lemon cake is a 4th of July must to me, as when I was a kid, the neighborhood ladies would invariably made a lemon cake or an angel food cake with lemon icing or BOTH.
So I decided these would be awesome as lemon cupcakes.

My oldest boy is now big enough to use the electric mixer all on his own. It makes me a little nostalgic for the days he had to stand on a chair just to use a spoon, which he reminded me of and giggled while we were mixing.
Your proof I'm NOT Martha Stewart - I only had Halloween cupcake papers. Ha.

While they baked, the oldest boy and I played Lego MINOTAURUS and talked about Doctor Who and dinosaurs and Star Wars. You know, boy talk.
After they were done, we realized we only had enough yellow to complete one ear of corn on the cob, so we opted to be creative and call the other one Indian Corn.

While I was cleaning up, he comes back into the kitchen and says, "You know, this has been a really fun day so far."

That's how I know, today, I've done something right.