"Oh, mom, leave me alone!"

Some students at a local college are raking leaves in our neighborhood in exchange for a donation to Habitat for Humanity, a favorite cause of mine. I signed up, and two guys and a girl came over and plowed through our front and backyard. Max was right out there with them. He helped rake. He dumped leaves onto the tarp. He helped drag the tarp to the curb.

When I stepped outside to take pictures of him, Max shook his head and waved me in. I tried to hide behind a bush (he looked so cute, I really wanted more photos), but he spotted me and again told me to go inside. I just barely snapped this pic.

Max wants independence. Of course he does. It's something I forget sometimes, because he's still dependent on us for a lot of things—feeding, dressing, diapering. But he's going to be 7, soon. And inside that body is a little boy who wants to be free to do things alone, without his mom or dad. Like any other 7-year-old.

It's me who needs to work on this independence thing. Because every inch of me wants to hover around Max, help Max, take care of Max. I've been in overdrive for years.

I know I have to let my baby grow up, in whatever ways he's ready to.

I have to let go.

Max and I are going to be rich and famous!

Oh, OK, so maybe we might just win a contest. I'm a finalist for The Bump Mommy Blog Awards in the "Hottest Mom" category.

Oh, OK, it's the "Special Needs Blog" category. And the competition is fierce; all of the blogs are worthy of recognition. As the saying goes, it's an honor to be nominated. I actually welled up. This is also a welcome distraction from what's sure to be a minor medical drama tomorrow, when Max goes for his ambulatory EEG to check whether he's having absence seizures.

Shameless plug alert, click to vote for me! Just scroll down to the bottom of the page. Voting ends October 19, and I'm pretty sure you can do it as often as you'd like.

Mom, you're going to vote for me, right?


Illustration by Rozana

The missing California boy with cerebral palsy

Some of you may have heard about Hassani Campbell, the missing five-year-old boy with cerebral palsy from Oakland, California. The story has been haunting me. His beautiful face has been haunting me. Jo has a really smart post today about media bias toward cerebral palsy. She notes that the press has told the public to look for a little boy with metal braces on his legs, but points out that SMO braces (the kind Hassani has) are not visible with shoes, and that kids with these braces often walk just like any other kid. So people would think they should be looking for a child with a noticeable limp and noticeable braces, when, in fact, Hassani looks like any other kid.

This bias is so prevalent. When I tell people that Max has cerebral palsy, many automatically assume he is in a wheelchair. I have to help them understand that cerebral palsy comes in many forms. Max's legs are the least affected part of his body; his arms, oral-motor skills and cognition are the most affected. Conversely, there is a boy in Max's school who is completely wheelchair bound but who is brilliant.

Tonight, I am thinking of Hassani, and praying for his safe return.


Photo from Oakland Police Department

What's next on my wish list for Max

So, the thing about having a kid with special needs is, you're never satisfied. Of course, when they first do something you've been waiting and praying and waiting for them to do, you're ecstatic. You do a happy dance (me, I'm a screecher), praise them like crazy, call your friends and family, blog about it, alert the press.

But soon afterward, you're wanting that next success to happen. You're impatient for it. That last achievement is left in the dust as your hopes are roaring off to the Next Big Thing.

I so want Max to be potty-trained. I am also dying for him to learn how to drink through a straw (here he is, pretending with my favorite way to waste money). Using a straw will be a huge step toward better tongue and breath control (critical for speech), but it'll also be a giant step toward independence. I'm not quite ready for him to start drinking coffee yet, though. One hypercaffeinated person in this house is enough.

What's next on your wish list for your child?

The reality checks you get about your special needs kid

As you know from the photo extravaganza I've subjected you to this week, we had a spectacular time on the cruise. Going on vacation with the kids is generally amazing. When you're a working mom, as I am, you experience the pleasures of being a full-time mom (with the perks of prepared meals and maid service). Being in a new setting, though, also means I get lots of little reality checks about having a kid with disabilities.

When we're at home, I rarely sit around thinking about Max's challenges. If you'd told me I'd ever reach this place years ago, I never would have believed it; when Max was very young, I so feared for his future that all I could see were the things he had trouble doing. Now, when I hear him trying his best to say words, I hear communicating. When I hold his hand, I feel the warmth and pleasure of his touch, not muscle tightness. When I look at him, I see a beautiful little boy with floppy hair and a smile that's like sunshine.

But when we leave our routines and comfort zones and the cocoon of our home, neighborhood and places we know, suddenly I have all these "Oh, I have a kid with handicaps" moments.

On the Disney cruise, the kids' club was willing to accommodate him, even though he wasn't potty trained like the other kids, but we had to be on call to come and change his diaper.

Oh.

We couldn't go for family dinners at the restaurants or go to shows as a foursome, because the noise made Max wig out.

Oh.

I'd notice people staring at him, oftentimes with a sympathetic look on their faces.

Oh.

Once, a mother asked about Max's condition, and when I said he had cerebral palsy she asked, "When is he going to get braces?", clearly not realizing that he walks pretty damn well and that cerebral palsy comes in many different forms.

Oh.

There were all sorts of little "Oh" moments like these. They didn't bum me out. Well, OK, maybe a little, but it's impossible to stay bummed in the bubble you exist in on a Disney cruise. Besides, I knew there's much to celebrate and be grateful for. Because this is a child who amazes me, impresses me and melts my heart every, single day.