Sunday, February 21, 2010

A Welcome Anonymity

Many of us who blog about parenting children on or near the autism spectrum do so under internet pseudonyms, blog-o-nyms that provide a thin veil of privacy for ourselves and our families. I have very mixed feelings about blogging under a nom-de-net.

At one level, I would like everyone I know in every sector of our lives to know the particulars of our daily lives. I want them to know about the issues with sounds, and foods, and various fears and preoccupations. I want them to know about the meltdowns we all weathered. I want them to know what a leap of faith it is to send your child off to school every day, year in and year out, knowing that she does not have enough language to report on her day.

I want them to know about why money is often tight since one of us has opted out of the labor market to remain available for the emergency school pick-ups and the trips to therapy appointments. I want everyone to know about the extraordinary expenses of additional neuropsychological testing and speech-language therapy services that are sometimes partially covered by insurance, but usually are not.

I want them to think about the work hours lost in endless school site visits in search of a more appropriate setting. I'd like them to understand the particular toll it takes to go to battle with the school and the school district at an IEP meeting. I want them to know about the costly conversations with attorneys who can sometimes be as concerned with maintaining their good standing with the school district and with the private schools where placements can be made as they are with protecting any one child's interests.

I want them to know about that special anguish of having others see your child as a problem, as a set of pathologies. And the reciprocal difficulty of others seeing you, the parent, as the problem, because you are (pick one): too indulgent, too strict, too attached, too cold, or — one of my personal favorites — in denial.

I want to stand up and say, Yes, that's us. That's our life. This is how we spend our time. This is what we do. Welcome — welcome — to our world.

And I want them to know the bigger (and better) story as well, the upside, the good life that friends Kristina Chew and MOM-NOS and This Mom all cultivate.

I want everyone to know about those moments when the supposedly impaired girl masters something that others had told you would never be possible. I want every one to know about the triumph of the dry bed. The first overnight away. The learning to read. The extraordinary artworks. The self-advocacy. The emerging womanhood. The exploding vocabulary. And the day that the girl who was silent steps up to the microphone. I want everyone I've ever known and everyone I'll ever meet and everyone else as well to know about how the liability of perseveration has given way to the asset of perserverance.

The publication of Gravity Pulls You In raised the ante on the anonymity that many of us who blog about parenting children on or near the autism spectrum have held dear. Some came out to be published under their own names. Others, myself among them, stayed behind that thin veil, moms behind noms. I could not be more conflicted about this . . .

To read the balance of this essay, visit the website for Gravity Pulls You In.

10 comments:

Joy said...

Hello,
My name is Joy. I am a mother to four sons (3 adopted, one homemade ages 20, 17, 11, and 3) . I was so surprised and delighted to find your blog. You see our youngest son is in the process right now of being diagnosed to be on the spectrum or on the edges. We have had him in therapies for a year now and at times it can feel so alone. So to find your blog is a blessing. Thank you

MothersVox said...

Welcome, Joy! The is a whole wonderful world of parents blogging about their lives with their kids on the spectrum, so welcome. In the next couple of weeks I'll be updating my blogroll list, and but check out the blogs of MOM-NOS, This Mom, Kristina Chew, Drama Mama, Shannon de la Roches Rosa and the others on their "greatest hits" lists. There's never been a better time to a parent of a child on the spectrum because the blogosphere (and the autism blogging community) makes it possible to cut through some of the isolation that goes with the work of parenting our kids. Welcome, welcome!

Sarah Doudna said...

Thank you for your terrific blog, beautiful writing, and poignant topics. I hope you don't mind, but I linked to your blog on our facebook page. I'm looking forward to reading the other blogs as well.

is Autism a Genetic Flaw? said...

Thanks for creating a great blog. Keep upthe fine work.

þorgerður said...

I stumble across your blog now and then and read it to my delight. I blog in english to isolate myself from my tiny language zone. Try getting lost among the millions.The need that someone would know yet a longing to keep everything private.
So many of your topics hit home.

Þorgerður said...

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MothersVox said...

Welcome Borgerour! I am delighted that you found us over here at Autism's Edges. I am always balancing the question of privacy with the value of sharing in as much detail as possible what goes on in our life with Sweet M. Your strategy -- writing in English when the local, proximate language is Icelandic -- is rather brilliant! I will keep visiting your blog!

MothersVox said...

@Sarah . . . Thank you for coming by the blog and for your kind comments. I think having a child on the spectrum, with it's amazing moments of accomplishment and also days of challenges for everyone involved, makes the potential for poignancy ever present. I'm so happy that you've linked to Autism's Edges. I'm always happier when people who may find the blog of us find it!

Adoption of Jane said...

I love your blog. I am not anonymous because Autism is just a part of our family. It doesn't control our family. There are as many good times to write about as troubling issues. I think its good for parents on the Spectrum that focus so much on the hardships of Autism to see the refreshing side too. I do, however, respect everyones choice.. Anonymous or not.

MothersVox said...

Hello Jane and welcome, I think if you come around Autism's Edges, you'll see that we have plenty of upbeat, funny and triumphant moments -- like all the victories and quirks described if you follow the link to the Gravity Pulls You In page, where the full post of A Welcome Anonymity is published. Come around again -- I'm hoping the spring will allow more times for posting. Welcome!