Atti the Gleek

Tell me this kid isn’t a musical prodigy. Look at Atti showing his mashup skills. He started off with “I Am Like a Star Shining Brightly,” went into “Twinkle, Twinkle,” back to “Shining Brightly,” into “I Am a Child of God,” back to “Shining Brightly,” but this time with a key change, added a little soul to “I Am a Child of God” before breaking it down with “Head, Shoulders, Knees and Toes,” and bringing it all back around to where he started with the last part of “Shining Brightly.”

Personally, I think it’s inspired.

Oh What Do You Do In the Summertime…

Atti the Cowboy

The title of today’s post comes from a kid’s song we sing at church.

Oh, what do you do in the summertime, when all the world is green?
Do you fish in a stream, or lazily dream on the banks as the clouds go by?
Is that what you do? So do I!

Oh, what do you do in the summertime, when all the world is green?
Do you swim in a pool, to keep yourself cool, or swing in a tree up high?
Is that what you do? So do I!

Oh, what do you do in the summertime, when all the world is green?
Do you march in parades, or drink lemonades, or count all the stars in the sky?
Is that what you do? So do I!

Our summertime is not exactly looking like that. Our summertime involves Sesame Street marathons, aimless internet surfing, cranking on the thermostat, and silly clapping alphabet games I make up so that I can feel like I did some mothering in a day.

Honestly, I’ve been at a bit of a loss. Atti’s either too young/uninterested/unable to participate in the typical summertime activities, and all he is interested in doing is an indoor thing. Except driving. He loves to drive around, but the AC in my car is going and it has been wicked hot here lately. So I’ve had to choose between keeping cool, or feeling like a “good”, fun, active mom.

When I was a kid I hated summertime. I didn’t like being hot, I didn’t like being dirty, I wanted to sit in a cool room and read my books. I probably shouldn’t be mad at myself if my kid’s turning out the same way, right?

And yet, every time I ask Atti if he wants to go outside he cheers. So I spread the blanket and grab some books and then he refuses to open his eyes in the sun, or screams at the touch of the grass, and we’re back inside before I even settle down. He’s like a dog that wants to be let out right until he’s let out.

So we’re back inside now, laying under the ceiling fan and watching more Sesame Street. But at least it’s educational, right?

A 4th of July pictoral

4th of July picnic

tree

Atti in the grass

Bubbles

Baseball

Fireworks

Community Support

Sunshine
The world is a kind and beautiful place when you have an adorable toddler in a wheelchair.

Atti and I went to the farmer’s market together and I felt like I was the bouncer of a celebrity. It is not at all an exaggeration to say that I could barely do any shopping because so many people wanted to stop and talk. This is not an isolated occurrence. He attracts a whole lot of attention everywhere we go, and it’s not an unwelcome staring, it’s a supportive, smiling, “Look at him go!” kind of attention.

People rarely see such a little guy in a self-propelled wheelchair, and when they see him pushing those wheels all by himself, getting frustrated when I try and hold him back, trying and trying and trying again to steer the chair around obstacles, they light up like he’s a basket of puppies.

Atti at the farmers market
People stop me to tell me about their granddaughter or neighbor or friend who has a disability. They stop to ask about Atti’s future and wish him well. Children are super curious and their kind-hearted parents stop us to show their kids that there is nothing to fear and that they should be nice to kids in wheels. I love these parents with all my heart.

Even people who don’t mention Atti’s disability still show me more warmth than I’m used to. They show me simple kindnesses, say hello, strike up conversations. Having my challenges so obviously visible brings out a tenderness in people. I no longer get snapped at by cashiers or elbowed in line, I get people looking out for me, letting me go first, helping me with my things, meeting my eyes with support and sympathy.

Clapping
And when another mom of another kid with special needs finds us? It’s like a joyful reunion. This wheelchair is like wearing a football jersey, telling the whole world exactly what team we’re on. And then other moms, whose kids might not be so obviously different, seek us out and we revel in team spirit.

Unfortunately, I suspect I might not feel so in love with the world if my child looked a little more different. If his disability affected the way he looked instead of the way he moved I might not get the same reaction. But I’m just going to be grateful for all the kindness I find in the world, and pray that it continues when he’s a little less adorable.

Ice Blocking with the Family

Dusk
Summertime is here in Modesto, and it’s in the best part. When things are getting warm, but before they get so hot you can’t bear to have skin.

We got together with our friends from church for a family activity, and somebody in the planning got really creative and fun and decided to have an ice blocking party.

Atti and Lulu
One of our friends has the best dog ever named Lulu, and Atti is so totally in love with her. If she’s around, Atti doesn’t care about what else is happening. He wants to give her kisses and stuff his hands in her fur and say, “Aww…Doggie.”

Top of the hill
There’s a park near here that seemed to be perfectly made for ice blocking adventures, so we all got together with our ice blocks and towels and took turns sledding down the hill. Here in California where we don’t get snow, we have to get a little creative with our outdoor sports.

Ice blocking with Atti
Another of our friends got in touch with his inner engineer and made an official ice blocking sled, a long piece of wood with slots on the bottom to hold the ice in place, and a handle to steer with. It was brilliant, and Atti was the most excited by it because we could take him down with us.

Ice blocking
Our little daredevil couldn’t get enough of it.

2011 Year of Pleasures #20

Atti on the new bed

For years I’ve had over there on the sidebar the goal of building a headboard. But as I started making plans, and Atti and the cats kept growing, I realized that I shouldn’t build a headboard until we upgraded to a King sized mattress.

That day finally came and the whole family is overjoyed. I found a crazy crazy good deal, so we went with a really high quality, pillow top, fanciness, and every time I get into it I can’t help but let out a big sigh. The quality of my life has just doubled, I swear.

Atti jumping on the bed
Atti likes it because it’s great for being tossed onto.

The Wheels on the Bus Take My Baby Away

Atti rides the lift
The big day finally arrived. After months and months of waiting for red tape, and insurance baloney, and meeting with all the people who had to give approval, we finally got on the route to have Atti bussed to school. It’s a day I’ve been looking forward to bittersweetly, knowing it would be hard to watch him go off without me, but also excited to have more time to myself and less driving all over the place.

Atti on the bus
The morning did not go exactly as I planned. We sang wheels on the bus and talked about what would happen and all the friends he would see, and then, Catastrophe. I wheeled him out the front door to wait for the bus, turned around to grab the camera and Atti rolled off, hit the grass, and rocketed forward right onto his face.

I freaked right out and raced to pick him up, and right then is when the bus pulled up. I tried to coo and snuggle to calm him while Bear wiped the blood off of his lip, but the busdriver was unfazed. He just went about his business strapping in while I frantically sang songs and snapped pictures and acted happy and Atti screamed. He just said, “Don’t worry, he’ll get used to it,” shooed me off the bus, and drove away.

My baby going off without me
I went inside all teary, paced around the house for an hour, snacked on food I didn’t want to eat because I didn’t know what to do with myself, and finally settled down for work. Just in time to get a phone call from Atti’s teacher telling me that his face was covered in fresh scratches and that he wanted to make sure I knew nothing happened at school. I wanted to crawl in a hole. “no,” I told him, “I did that.” Oh the shame!!

He made it home!
He made it home in one peace, shouting “Buh Bye!” to the busdriver as soon as he saw me. He seems to have made it through his harrowing morning without a crippling life long fear of riding the bus. The busdriver told me that every time the bus went over a bump or swayed from side to side, Atti would burst out laughing. Laughing with every bump in the road. Is this my kid, or what?

Zoo Day

Atti at the zoo

I finally managed to harass Bear enough to take a day off of work during the last week of Atti’s school break, so we decided to make a day of it and go to the zoo.

Giraffe

It was our first big expedition with the wheelchair, so as we were buying tickets to get in I asked the cashier about their disability access. He looked at Atti in his chair and said, “Oh! Hang on a second!” and rang us in over again. I never would have thought to ask, but we got a major discount! Atti’s ticket was cheaper, and I got in for almost nothing as a “caretaker” discount. Super A+ Sacramento Zoo!

Flamingos

My duties as caretaker mainly involved pushing the empty chair around while Bear carried Atti everywhere. In his chair he came right up to handrail level, so he was missing out on most of the sights. But with his dad he had a great time looking at the funny, smelly, birds.

carousel

But really, all he wanted to do was ride the carousel, which was of course not included in the entry fee. As soon as he saw it, he could not be dissuaded. He didn’t really want to listen to me trying to take a teaching moment to talk about waiting our turn. Instead he just wanted to yell at the people standing in front of us. But I suppose any communication is better than none, right?

A Boy and His Bike

Bike
Atti has all kinds of wheels now! We got this little bike for him at Christmas time, but we haven’t used it much. Then our OT helped us adapt the pedals to keep his feet strapped in and now Atti has a bike that’s secretly a therapy tool.

Bike riding with dad
It seems so important for every kid to have a bike, but the one’s that are adapted for kids with disabilities are crazy expensive. Like, you could get a car for the same money. We found this one at Costco of all places. We couldn’t believe our luck. Along with a whole bunch of safety harnesses, it also comes with that caretaker handle on the back so we can push Atti. And then best of all, as we push him the pedals go round and round and it teaches him how to move his legs.

Boy on his bike
It’s amazing how grown up he looks. My baby is totally a kid.

Jump!

Jump!
Last weekend we got together with some long lost friends for a BBQ. A couple of our friends moved back to Canada a few years ago, so now we have to content ourselves with the internet, and the rare visit where all the people who love them fight for time. We were lucky to get a whole afternoon.

Since the last time we saw them there have been new additions to families and kids have sprouted up so that they’re almost unrecognizable. We tossed all the kids inside the trampoline and enjoyed our time to catch up.

Trampoline with the kids

The other parents were worried about Atti getting hurt or stepped on, but I just tossed him right in the pile. I figure that kids are supposed to come home with the occasional bruise. This is Atti’s chance. The kids are just awesome because instead of being weirded out or overprotective they just asked, “What’s wrong with his feet?” and I told them that he was born too early for his brain to tell his feet how to move, but the rest of him was just like them.

Static Hair
Atti giggled and shouted “Bounce! Bounce! Bounce!” while the kids jumped near him. And I tried not to cry as I saw my little guy included by his friends.