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After months and months of red tape and hauling this little kid around in my arms until they’re big enough to frighten Madonna, Atti finally has his own way of getting around in the world.

It’s very bittersweet for me. Part of me watches him in his chair, excited to see the world on a whole new level and rushing right into the thick of things, and I’m thrilled. Thrilled that he can have some more independence, that he can find a way to get around in this world, that he can now be part of the pack of kids causing a ruckus. And the other part of me is crushed as the last bit of denial that cushioned my hopes no longer makes any sense.

With cerebral palsy, you never know what it’s going to look like until it starts looking like it. Doctors predicted that he would never walk, but I was convinced they were wrong. I still am. I still think he’s going to walk, and maybe just use the wheelchair on long days. But the overachiever in me didn’t just want the doctors to be wrong, I wanted them to be so wrong they’d be embarrassed. I wanted Atti to be walking so well and so soon that we’d never even get to this point. I needed to think that to keep putting one foot in front of the other, but here we are. And it’s looking like what I never wanted to believe it would look like.

But then I watch him in action, and the sweet so far outweighs the bitter that it might even be better this way. To watch him not just blossom, but explode as he relates to the whole world in a different way, it just makes me weep. It’s like magic, his speech has improved, his behavior has improved, because now he’s not just in his own little world, he’s found his way into ours.

And he’s going to explore every bit of it.

Holy crap this has been a rough few weeks. I don’t know how I could have gotten through it without you.

This assessment process has been absolutely brutal, as I get an hour with different experts to convince them of my boy’s potential and try to explain the bundle of obstacles and eccentricities that explain his performance. There were many many moments where I felt completely defeated and that I must be that awful mother who is convinced her child is perfection while everyone else sees reality.

But I did learn a few lessons and I have a few new priorities to help Atti accomplish as much as he can. I think his vision is really affecting things, so I need to get back to the eye doctor as soon as I can. As I watched his performance on these tests, I really began to suspect that he has limited depth perception. Particularly when it came to distinguishing a 2D object.

I also found a problem area that I was completely missing – he has trouble responding. He talks so well when it’s his idea that I hadn’t caught on, but he won’t answer a question. This could be because he’s a little butthead sometimes, it could be straightened out in speech therapy, or it could be a sign of brain damage. There’s no way to know until he reaches a limit.

Gearing up for this process, I had my heart set on a program where typically developing kids make up one half of the students, and kids with a variety of needs make up the other half. I know this little guy is bright, and I didn’t like the idea of having him in a Special Ed class exclusively. The special ed’s of my childhood still live in my brain and I didn’t want him there. I don’t want him ostracized, ignored, or ‘different.’

But then we went through test after test and I saw how there are significant gaps in his development. He doesn’t know his colors. He won’t look at a picture and tell you what it is. He won’t stack blocks. But he can count to 20 and knows his letters by sight. One specialist was telling me he was intellectually disabled, one told me he was developmentally disabled, and I began to doubt that I knew best. Maybe I didn’t know my child the way I thought I did.

One of the rounds of tests Atti had to do was academic placement. I had no idea who the man was administering the tests, I had given up trying to keep everyone straight by this point, but I assumed he was another psychologist or something. We went to our second appointment with him and it was just in time to meet the other kids on their way home and discover that he was actually the Special Ed teacher. He gave Atti the test and was so positive and supportive that I burst into tears there in front of him.

After a solid week of fighting to prove that my child was bright and capable, having this man say, “He’s so bright! His language blows me away!” reduced me to a red-faced puddle. Suddenly, I didn’t care what label Atti had to wear or what interaction he’d have with typical kids, I wanted him to be taken care of by this man.

Having a teacher who I felt actually saw my child made me abandon any other plan I had.

We had one last appointment with the psychologist today and at the end of our meeting we talked a little bit about Atti’s future. I told him how I was still convinced of his potential and would want re-evaluation in the future. I believe Atti will be able to catch up. I told the psychologist that I have been so focused on developing Atti’s motor skills that many of the concepts he was being tested on were pretty knew to him. Atti just doesn’t play the same way other kids play. The psychologist asked me what Atti would have been like if I hadn’t done things that way and the realization took all that sense of defeat and swept it away.

The answer came immediately. If I had done things differently, Atti wouldn’t be mobile at all. It was the right thing to do, no matter what the test says.

Mama says my magic shoes are gonna take me everywhere.

The braces have come in, and after a few days of adjustment Atti now wears them whenever he’s awake. I have to admit, I really wasn’t looking forward to this. He’s so scrawny that a lot of the time I can tell myself that he’s still just a baby and his lack of mobility doesn’t seem so scary. But having to wear an apparatus full time pops that delusional little bubble and good.

They look a lot more comfortable than what poor Forrest had to wear. Light weight plastic, padding on all the pressure points, and I even got to choose a snazzy rock band design on the velcro. His therapist said that all the money we’ve put into the space program was worth it just to have the plastic that made these braces instead of the metal and leather contraptions they had to use when she started working.

I can’t even imagine being a parent dealing with those. All the adaptive equipment is a blessing, don’t mistake me, and whatever mobility Atti captures through it’s use will be worth any amount of sacrifice. But it is also a barrier. It is harder to hug your child when they are velcroed into a large piece of equipment. It is not as easy to snuggle when there are plastic bricks at the end of their legs. It’s bittersweet. Like so much of raising children is, I suppose.

Atti does not seem to mind them. He did a little squawking about them at the very beginning, but then a miracle happened. We put on his new braces, along with some leg splints to help him keep his legs straight, and stood him up next to a table. He stood up, pushed away from the table, and stood up completely independently. There in the middle of the room with no hands on him, he stood up all by himself. Legs akimbo and chest thrust out like an explorer on a mountain top. And I guess, in many ways, that’s exactly what he is.

Today has been a ridiculous day of tech problems on top of the typical trying to catch up after being out of town. Tomorrow will be a better day. I hope.

It’s Maria Bamford!

As I’ve mentioned, I am a great big comedy nerd. And one of my most favorite comedians is Maria Bamford. Bear and I met her at MaxFunCon and got to eat lunch with her, and it was just unreal how friendly and open and engaging she was. She was absolutely the highlight of the weekend for me.

As we were all leaving I snagged her for a picture and I started debating with myself whether or not I should push a business card on her with this blog’s address on it. But while I was trying to decide if it would be a friendly or annoying thing to do, she asked for it. I was totally blown away. You never expect the people you admire to be interested in you, but she was. She was just the best.

If you aren’t a fan of Maria’s yet, do yourself a favor. Go to YouTube and prepare for the laughs. Here are some of my favorites:

A couple instances of PG-13 language in this one:

Swearing’s a little more frequent in this one, but it’s not like it’s Deadwood. And it’s totally worth it for anyone who struggles with…..anything.

I’ve put up my new goals for 2010. Right over…
<------- there. Yeah, I know, there’s a lot of them. It’s probably mathematically impossible for me to achieve them all, especially given how much knitting is on the list when I am such a very slow knitter. But my favorite part about making that list last year was having one dedicated place for all my crafty goals, so when it was time to start a new project I could pull what inspired me from this one organized list and I could stop obsessing. You may have picked up on the fact that I’m a touch obsessive. What with the OCD and all. And I can get carried away thinking about the projects in my head. For example. There in the home projects list is the vague description “decorate door.” Our family room is kind of oddly constructed due to the remodel job of a previous homeowner. Where our neighbors have a closet and a laundry room, I have a home office and under the stairs nook. See?

That extra space is invaluable, but it means that the industrial fire door leading to the garage is flat in the middle of the wall we spend the most time staring at. So every single time. And I mean Every. Single. Time. I see that door I think, “I need to do something to make that door look better.” Going out to do laundry, back and forth to gather all the baby stuff before leaving for an outing, sitting and watching television, typing on the computer, there was this steady drumbeat. Decorate the door. Decorate the door. Decorate the door. Just in case I forgot or something, my obsessive mind kept bringing it up. Decorate the door.

Now every time I hear that voice, I can tell myself, “I’m working on it. It’s on the list.”

I may have just overshared on the crazy a little.

Most of the projects are probably to be expected from me – I make my Christmas cards this time every year and pack them away with the decorations, I have a new themed tree on the agenda – and others are to stretch my skills. In all the knitting I’ve done, I’ve never actually made a sweater for myself. I lucked into the perfect yarn at a steal of a price, so now is the time to learn how to fit.

I’ve also got a couple of things I’ve been meaning to do for EVER. Like write a draft of the memoir I’ve been thinking about since I was 15. And then Atti is so the cobbler’s kid who has no shoes. All the scrapbooking I’ve done over the years, and my poor neglected kid has nothing to show for it. I’m thinking of doing the traditional scrapbook, but maybe something else too. Something text heavy that tells his story. Like the blog, but with pretty papers.

So much of the house is as decorated as it’s going to get. I still have plans for art on the walls, but the big project this year is going to be decorating my bedroom. Back when we did all the housepainting, the color I chose for our room turned out lavender instead of gray, so it’s finally time I did something about that. And then built that headboard I wanted to do last year and got some lamps and things. Maybe then I’d feel inspired to actually make my bed once and awhile.

On top of the things I want to do, I always try to learn one new skill a year. Last year I took up gardening. This year the skill I want to learn is more like one I want to re-learn. Like every mother everywhere, I have let myself get carried away with the frump. I have done almost nothing to shed baby weight because I don’t enjoy exercise and I had precious little time to even fit in the things I loved. But now that Atti’s older and I feel like I have a little more of a handle on things, it’s time to get serious. Don’t fear, I’m not going to turn this into a weight loss blog. I’m only interested in writing about losing weight if it relates to cute clothes. There was a time in my life where I was known as the most stylish person in the room. I want to get back to that person, and I think I’m going to have to let go of the yoga pants in order to make that happen.

We have been just awful about getting out and enjoying where we live. Since we moved here over two years ago we’ve poured every spare second into working on the house, and now that we have Atti, getting out is super complicated. Along with all the usual paraphernalia that comes along with kids, we have to imagine every scenario we might find ourselves in, and come up with a plan for Atti’s mobility. Strollers don’t work everywhere, we can’t carry him the whole time, a shoulder harness is a pain to get on and off quickly…it’s usually a combination of strategies and being prepared to cut trips short when our arms give out.

But I also refuse to allow my child’s disability to shut him off from the world, so we are trying to figure it all out in baby steps.

On Saturday we tried to go to the beach, but that was a huge mistake. The beaches here in July are swarming with tourists, and this week there was some big faith healing event at the amphitheater. We ended up having to park ten blocks away, and we didn’t even make it to the street before we decided to give up.

So the next day we aimed a lot lower, packed up a simple picnic, and just hung out at the park for a few hours.

That was much better.

I have to monkey around with the feed settings. Hopefully all the subscribers will come along for the ride without incident, but if you don’t hear back by Monday, will you please come back and update your feeds? I’d hate to lose anybody while I’m over here poking around.