Musings of a Marfan Mom

The Special Needs Mini Conference was a highlight of BlogHer. For those of you who have been to something similar (say, the NMF Conference), you’ll understand what I mean when I say that it’s lifesaving. Being with other people who “get it” preserves a piece of me. Walking into that room, I only knew a handful of those women from their blogs. Most were complete strangers to me. I’d never met one in person, never chatted on the phone. But walking into that room, I came home. It was a Safe Space to be able to discuss our concerns, trials, and joys without judgement or pity.

Thanks to the brilliant, hard work of Julia Roberts, BlogHer allowed Support for Special Needs to host a 2 block workshop session this year. We had a delicious lunch followed by a panel discussion led by Aurelia Cotta, Robert Rummel-Hudson, and Shannon Des Roches Rosa. (You can go here for a complete transcript of the session.)

Robert’s discussion was particularly memorable to me. It got into the political aspects of raising children with special needs. He said “They’re talking about putting entitlements on the table. […] We can frame this whole discussion in terms of civil rights rather than in terms of entitlements or funding. […] When times get rough, all of a sudden, our kids, their lives and the things that make their lives and gives their lives power and meaning, they’re on the table.”

He went on to discuss how people don’t complain about some of the other places that our money goes to, like bridges. Our children are an investment too, a vital one, but right now the conversations aren’t being framed that way.

My toddler benefits from these programs. He is speaking because of these programs. He will, I hope, get to be in mainstream classrooms because of these programs.

Buy my baby? He has a speech delay (among other things). He’s 8 months old and he already has one. And in the state of California he can not get speech therapy until he’s at least 18 months because of the budget cuts. He can not get OT for his fine motor delays or his sensory problems. Our insurance will cover some OT but not the speech therapy, and so Baby J is stuck waiting and getting further behind, through no fault of his own or ours. Can you look me in the face and tell me my children, the children of so many of my friends, are not deserving of every opportunity because they got the luck of the draw of being born with extra needs?

I agree with Rob: this is a civil rights issue. As the discussion about this topic developed, the energy level in the conference room became palpable. There was a sense of urgency. I don’t know where all of this will lead, but I know that this is the start of something important.

I’ll leave you with this:

When you think of autism, I want you to see the Menininho. I want you to see his rough days, with the meltdowns and the rocking and the scripted speech. I want you to see his good days with his giant hugs and the way he rubs his baby brother’s head so gently while murmuring “pat the bunny.” I want you to see how far he’s come and where he has the potential to go. I want you to see my son.

When you think of Marfan syndrome, I want you to see Baby J. I want you to see how much harder he has to work, and will have to work, to achieve the same physical milestones as his peers. I want you to see how he lights up around his family and how he throws his arms over his head when he sleeps. I want you to see how far he’s come and where he has the potential to go. I want you to see my son.

When you go to the voting booths to make decisions about funding the so-called “entitlement programs” that are creating a quality of life for my boys, I want you to see my sons. And then I want you to help provide them with the chance for the same opportunities their able-bodied, neurotypical peers will have.

* For other attendees’ recaps, go here