Blogging Special Needs

blogher pals

I don’t typically think of myself as a “special needs blogger,” which is silly, because I totally am.

But that’s probably because I don’t always think of Atti as having “special needs.” I mean, of course he does, but when people ask me how Atti’s doing, my answer is always, “Great! He’s an awesome little guy!” Only later do I think to tell them about his progress in therapy or what our next milestone is.

This whole special needs business is pretty funny. Parents of typically developing kids are so often terrified by our reality, but the truth is that we’re often terrified of each other’s realities too. The fact that Atti might never walk and I will be dealing with diapers for a very long time makes some people quake with fear. Meanwhile I drink in every hug and kiss and lie awake at night thinking about what a mom of an autistic kid might do without them.

Then when you start advocating for your child and fighting over the tiny scraps of funding and resources, those fears can become wedges. If you have a child with motor issues, panic and fear can make you think that a sensory integration disorder is a luxury. If your child has a sensory integration disorder, walking doesn’t seem as important as being able to get through the day without screaming.

That’s something that really came out of the BlogHer Special Needs miniconference in a big way. Right now funding is threatened in every state, school boards are reluctant to dedicate a significant portion of the budget for special programs, and disability rights still have a long way to go. If you think that disabled access isn’t a problem? Try taking your child in a wheelchair through New York City, or an amusement park, or even down your street. My town doesn’t have sidewalks on many streets, and even those are often not maintained. Try to push a toddler in a wheelchair over concrete uprooted by trees or up and over a curb because there isn’t a ramp for access.

The need is great, but we can’t allow that to separate us. Parents of kids with special needs have more in common than what differs. I need the mom of a kid with Down’s Syndrome to fight for Atti to have access to a bathroom that fits his chair, and I’ll advocate for her kid to get educational access, and we’ll all fight against hate speech.

The needs of the kids might be different, but the needs of the parents are all the same. We need support, we need encouragement, we need someplace to put the frustration and fear we feel, we need someone to understand all the beautiful little milestones along the way, and that our lives are not tragedies. I found that at BlogHer, and I’m so grateful I did.

Read what some other attendees learned from the conference.

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.