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.