Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

The Personal is Political

with 19 comments

The State Department (my husband’s employer) actually used to rate the conduct of the spouse’s behaviour as part of the officer’s evaluation. That doesn’t happen any more, to my husband’s great relief, I imagine. So I can say what I want on my own personal blog, if I choose to. And when we are overseas entertaining, I could, in theory, speak my mind, but I don’t….always. You don’t need to go to many official events before you realize that the topics of politics and religion are best avoided outside of close company. See, Spectrummy Daddy didn’t make such an awful mistake in his choice of wife, now did he?

So while I could, on my personal blog, talk about these thorny issues, I choose not to. It isn’t that kind of blog. Those who know me privately know where I stand. My intention is not to divide, it is to tell you all about the girl I refer to as Pudding. Pudding doesn’t care who you voted for, or which god you pray to, or if you don’t at all. I hope that is something she doesn’t grow out of. That she will continue to see through to the juicy human goodness underneath our opinions and beliefs. The things that unite us, rather than divide us. It is one of the many wonderful things about her. I might have autism to thank for that. After all, it doesn’t tend to discriminate either.

But sometimes, politics seeps in. It seeps in when politicians put air quotes around the word autism, as though we’re all imagining it. Parents, teachers, therapists, doctors, all involved in a mass hallucination. It permeates when votes are cast as to whether or not her medically diagnosed condition is covered by health insurance. Health insurance that we pay for. For a condition that was diagnosed by medical professionals. Words fail me.

When I started this blog, I wanted to show people what autism means to us. Pudding is comparatively lightly touched by autism. Her type is certainly not as disabling as it is for some of her classmates, whose daily struggles far outweigh those she faces. Nonetheless, she requires a lot of support, a lot of intervention in these critical early years to develop the tools to let her function as independently as possible in the future. She needs therapies and services that she yet to receive in the 18 months since she was diagnosed. We can’t afford them. Our insurance won’t cover them. Decisions are made by those whose lives are far divorced from the struggles of the many families like us. The personal is political.

And sometimes the political becomes personal. I read this yesterday, realizing part way through that Brian, my husband’s friend from college, is referring to our family. I’m glad that we have talked about some of these issues with our friends. I’m glad that minds are changing, even if it is just one at a time.

Today the bill for autism coverage in Virginia will be debated. The bill is very modest compared to those already passed in many other states. It will only cover children aged 2-6. We’ll have moved anyway by the time it comes into effect. But this could make all the difference to Pudding’s classmates and their families. No matter what their religion, I’m pretty sure they’re praying for politicians to do the right thing today. I know I am.

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Written by Spectrummy Mummy

February 8, 2011 at 6:54 am

19 Responses

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  1. amen.

    akbutler

    February 8, 2011 at 6:58 am

  2. Just as an aside, spouses all have to watch what they say no matter the job or position.It’s why I generally blog anonymously as possible and never never never mention anything about his business, clients or profession. Social media is a new phenomenon and you have to be very careful. Hubby has a rule, if you do not want it as a major headline in The New York Times, don’t write about it,and don’t print it. You never know what will come back to bite you on the butt. So I generally stick to autism and some aspects of it, with an occasional post about mental health politics. Yes, I do have a political blog, but even on that page I refrain from the personal and even for the most part talk about aspects of law.It’s also why there aren’t many posts on those pages.

    Hope they pass the bill too. The one in New York failed thanks to Autism Speaks.

    aspergers2mom/Elise

    February 8, 2011 at 7:19 am

    • I make it a personal rule that I don’t say anything online that I wouldn’t be prepared to say in real life, especially to Pudding. 🙂

      Spectrummy Mummy

      February 8, 2011 at 6:34 pm

  3. […] This post was mentioned on Twitter by Elise , Spectrummy Mummy. Spectrummy Mummy said: The Personal is Political http://wp.me/pZNhv-o4 […]

  4. Glad to be able to advocate for you and folks in your position, SM – what you write here is an inspiration to many, many people, including me and KayAnn. Thanks for everything!

    Brian W. Schoeneman

    February 8, 2011 at 9:11 am

  5. Tears. Thank you for posting this..

    Autismville

    February 8, 2011 at 9:34 am

  6. Like many others I never gave Ausism or ASD any thought prior to my son’s diagnosis. Then our world changed–we laced up and fought with insurance companies, providers, schools and challenged others to think “what whould YOU do if this were YOUR child?” We’ve paid a pretty penny out of pocket as well.

    Thank you for putting this out there for others–L

    Lizbeth

    February 8, 2011 at 11:35 am

  7. Thank you for your words of hope and strength … my son is moderately autistic (high functioning, if you will) but has required therapies, intervention, and the like … I know what you are going through. He is now 15 and I am fighting in court on his behalf AGAIN! Thankfully there are such Guardians in the court system to speak on the behalf of a child because I apparently can’t get my point across. His safety and well being are of the up most importance to me. He struggles enough in the real world, he shouldn’t have to at home or in the school system. I have also had insurance companies decline him for care because it was considered “not medically necessary”. Who died and made them bonafide doctors? All they are are politicians and marketing directors who want to make sure pharmaceutical companies keep profiting and NOT letting the Dr’s do what they need to do for these children. With the rate of autism increasing, you’d think they’d get the issues straight. Hang in there “mummy”; we will prevail.

    Tonya Tzianakakis

    February 8, 2011 at 1:04 pm

    • Thank you for your visiting. I agree, the real world can be enough of a struggle- home and school shouldn’t have to be as well.

      Spectrummy Mummy

      February 8, 2011 at 6:30 pm

  8. I believe legislators would vote for this insurance coverage if (1) their family were affected [if they are not now, they will be] and (2) they realized the impact on society if this rampant disease is left unchecked and untreated.

    autism gramma

    February 8, 2011 at 3:07 pm

    • Thank you for your comment. I agree that treating autism in young children is the most cost-effective solution, and have no doubt that more legislators would support this bill if they knew more families affected by autism. However, I must stress that autism is a developmental disorder, not a disease.

      Spectrummy Mummy

      February 8, 2011 at 6:27 pm

  9. It make take forever for people to realize just what they should be expecting to come up from these children. I pray like you that we all get closer to making people understand how complicated and complex each ASD case is and how families financially are hit so hard with the care that is involved. Insurance that you pay for is not enough to cover the expenses of a fairly healthy person. I do not know we can expect it to cover more and at what cost to us?? I hope that insurance companies do step up to the plate and cover more- but that is only going to happen if we all continue to demand more, united in our efforts to care for our loved ones who LIVE with this disorder not “suffer” from it. You can demand more every day just by making sure your child is given the most there is on offer from thier education and making sure they have inclusion rights in the classroom. Make sure your teachers are aware on how they can help provide a place in class where your child can learn on thier terms- we are all in this together.Keep on blogging.you are not alone.

    Lorrie

    February 8, 2011 at 4:56 pm

    • Thank you Lorrie. Since I’ve started blogging, the one thing I have never felt is alone. We’re definitely all in this together.

      Spectrummy Mummy

      February 8, 2011 at 6:28 pm

  10. I really hope you get the right result x

    Blue sky

    February 9, 2011 at 6:05 am

  11. Thank You and God Bless All families for making changes for all. What can I do to assist to get our world to understand we have to love one another for us all to exist. The choices we make today either makes our future worse or better what will we choose for our children and adults with this diagnosis? We are their voices because they depend on us to do the right things for them. It’s taking too long for the therapists that can teach them earlier in their life’s. They can make a difference before its too late. Knowledge is the answer education for all the doctors and making the correct choices. They need to listen to the parents we live with them we know our own. We are everything teach us educate us in what our children and adults need. we don’t make them wait for their treatments we just become and teach everything so they will live the best life they can have. Us caregivers need the break the tools the skills the finances health care so we can take better care of our Loved ones. Thank You and God Bless All that are making a difference.

    bettermom

    March 14, 2011 at 3:55 am

  12. I still love this post! Stopping by from Jen’s Blog Gems.

    Sue

    March 29, 2011 at 5:54 pm

  13. […] on us, and I mused about how it might be to see things through her eyes.  I got a little more political than I intended.  I learned from Pudding that I too needed a little […]


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