Musings of a Marfan Mom

Seeing My Sons


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

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  1. This was incredibly moving, Maya. And that gentleman is right. No one complains about budgets for fortifying and strengthening our bridges. What about our children? Where have we gone wrong? Thanks so much for this eye-opening post. Stumbling it…


  2. Beautifully written! Even with our “socialized medicine” we face the same issues in Canada. And on a related issue for our school aged children; cutbacks to education is leaving children with extra needs (I love that) falling further and further behind until they drop out or graduating far below their potential. It’s so frustrating especially in our province, one of the richest in the country, you contact your representative and receive the stock “this budget saw one of the highest budget for education.” It’s really hard to see that when over 200 teachers and support staff lost their jobs this year because of a lack of funding.


  3. Beautifully written! So often our kids, our future, are left out of the equation. It’s so hard for us as parents to fight the rediculous red tape for children with ‘invisible’ disorders such as Marfan’s & Autism. I trained myself to do as many of the therapies as possible when I realized our local services have a waiting list of 9 months but all referrals are only good for 6, essentially creating a never ending loop of denied service.
    My sis has Fibromyalgia and recently heard a speaker at a conference say that until there is a commercial, and therefore an acknowledged medicine or treatment, the condition does not exist. I very much agree that this has been the bane of our battle against Autism.
    Our kids are beautiful and amazing, keep fighting forward for their health!


  4. Your writing humbles me. Thank you for speaking out for your kids and for all our kids.


  5. This is well written, and I obviously sympathize with your plight…your kids (and mah nephews) deserve the remedial education they need to help get back on track.

    This does, however, crystallize the messy business behind making budgets, and fiscal austerity. Your state is bankrupt (and our federal govt is close to bankrupt), and so cuts have to be made from somewhere. No matter what the state has to do, SOMEBODY is going to be able to write an emotion post just like this…family members of public employees can write heartstring-pulling articles wondering how the state can be so callous as to lay them off, or cut their retirement. Kids will suffer if teachers are fired. Your community will suffer if they lay off cops or firefighters. Your economy will suffer (and the health of the planet) if you cut back on public transportation, etc…

    The crux of the problem is that virtually everybody only wants to cut “entitlements” (and, FYI, the programs that benefit your children are not actually entitlements) that they don’t use. When it comes down to something that directly impacts your family, it becomes something different.

    Again, not saying this is a smart budget cut. I think investing in children’s health and education is one of the smartest investments a state can make. But at the end of the day, somebody…actually, a LOT of somebodys, are going to be writing posts like this one. The only question is who.


  6. I think the biggest difference here is that in this case, those cuts may be aimed at a population for whom self-advocacy is particularly challenging. Alternative choices are few, and the quality of life consequences of those cuts are totally life-encompassing and probably irrevocable. The call to arms to fight for the rights of the disabled is particularly important and poignant because the stakes are higher for this population than any other. And they depend on the rest of us to take up that fight on their behalf.


  7. So touching and fabulous that there was an opportunity at BlogHer for you to connect with other parents dealing with similar issues. I know here in Texas we have what is called the “No Child Left Behind” program. To me, “no child” means no child. Not no child of this specific demographic or group. Every child deserves the opportunity to reach his or her full potential.


  8. I read your blog often Maya but I rarely comment. I don’t know why, bad me. This moved me. This was a beautiful post written by an amazing mother who had beautiful hopes for her children.

    I don’t believe in entitlement programs. An entitlement program makes me think of giving some extra cash to the CEO who just bought a new porsche.

    What you are talking about is giving everyone an equal chance. You want your son’s to be given the same time, attention, care, and OPPORTUNITIES that other children get… I can get behind that 100%.

    Love you and love your blog.


  9. That was a FANTASTICALLY well written post! We’re in the same boat with ours, Nolan is behind but not behind enough and Lennon has a huge vocabulary but you can’t UNDERSTAND any of it – they don’t care. So frustrating.

    I hope we can all find a way to get the help our children need.


  10. Well said, Maya. This was strong and powerful, and we need to keep saying this. These are not numbers or handouts, these are our children.


  11. Matthew – you are right to say that there is always vying for position when it comes to budget cuts, however, what we put on the table and, more importantly, what we don’t, is political. Education amounts to 1.3% of the federal budget, but it is always on the table. We habitually take from those least able to advocate for themselves: children, the disabled, the elderly and women — and do not put on the table corporations (as in tax breaks) and defense — two areas that would generate/free up a whole lot more money.


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