Tears of an autism mom

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So many of us autism moms are in need of some serious waterproof mascara. Here are some thoughts on why this is.

SILVER SPRING, Md., June 9, 2011 — There are many distinctive things about my family, both good and bad, but there are two things that we are notorious for. First, we throw up a lot. I'm not sure why this is, but between carsickness, gastrointestinal issues and general malaise, we more than represent in the regurgitation milieu. The other thing we are—or rather, I am—known for is bursting into tears everywhere.

 

I'm not going to go into the vomiting thing (you are welcome), but I've been doing some thinking about the crying thing, and I have some thoughts about it.

Yesterday, I read Laura Shumaker's column at SFGate.com in which she writes about autism moms, "We cry spontaneously for what appear to be weird reasons. Our specialty is crying in public and at IEP meetings."

Boy, is she right. Whenever I bring up this topic, autism moms come out of the woodwork to share their stories of crying in public places when our children struggle, when our frustration at trying to do the right thing for our child tops out or, worst of all, when a complete stranger says a kind word when we're having a bad day.

I had this experience a few weeks ago when I took my autistic son, Jack, to the third of four dentists in a desperate search to find the right people to take care of his teeth. We walked in, Jack sat in the chair, and a long buildup of stress caused me to burst into tears.

I probably could have recovered fairly quickly but for the fact that the dentist was exceptionally nice to me. Then the other dentist in the practice came over to see what the hubbub was all about and she was nice to me too.

I was a mess for hours.

If you're looking for a situation most likely to bring tears to the eyes of an autism mom, look no farther than the IEP meeting. These meetings, the high-pressure and sometimes contentious conferences with school personnel to determine what services our kids will get are an empty tissue box waiting to happen. 

Basically, this is a meeting that is set up for you to look at all of your child's weaknesses just before you are forced to contemplate his long-term opportunities. It's a lethal combination, especially when combined with self-imposed pressure to do everything exactly right so that your child can reach the most of his potential. Factor in a stable of intimidating school or district personnel around the table, and it's just a matter of how long you can hold off the waterworks.

I have done so much crying at my son's elementary school, in and out of IEP meetings, that I'm pretty sure the principal was afraid of me for a solid two years because I would cry every time we had a conversation.

I'm better now. Mostly.

Why do I (we) cry so much? I think for many of us, stress builds up and up and up until it has to release somehow. After holding ourselves together and building mental walls in the face of frustrations, obstacles and judgment, the slightest kindness at the right time manages to slip through a chink in the bricks and brings us to our (teary) knees.

There are obviously so many more reasons, each one as unique as each autism mom, but there are so many triggers. After watching our vulnerable children struggle so mightily, our empathy for any kind of creature in peril reaches epic proportions. 

We cry when we watch our kids with their typical peers because, even though we tell ourselves not to compare, it is impossible to not see the differences. We know intellectually that all families have challenges and that life isn't easy for anyone, but sometimes it just seems so overwhelmingly hard for us.

We work so hard all day, every day to improve our children's chances, yet so much of the time it doesn't seem like enough. And no matter how meticulously we plan our days, autism has a way of throwing a monkey wrench into the works, shattering the best laid plans into bits.

We watch our children struggle to exist in a world that is not built for them, and that all-too-often doesn't welcome them. We see our kids who are so good be undervalued and misunderstood and it leaves our hearts raw.

This rawness hits at the most inopportune of times, often making our cars the go-to spot for autism moms to cry. If we're stuck without a handy car to jump into, sunglasses are pretty good at masking teary eyes, and I've heard that blaming allergies can be an effective strategy as well—although less so in the dead of winter.

It's not all sadness and distress that make us autism moms cry. As a group, we are also extremely susceptible to happy tears, brought on by the simplest of accomplishments. I cry all the time when I watch my son Jack play hockey with his special hockey team—and it is almost always because I am blown away by the good in the world, and only rarely because he is being a pill. There are times when I see true inclusion, whether by an organization or an individual, and it makes me cry every time.

Most of all, we autism moms see joy and beauty in such small achievements as a first joke, a first "I love you," and the first time they want to play with friends—or the first time someone wants to be friends with them. We hope so strongly and work so hard to get to these small milestones that hearing our children ask an unprompted question can bring tears to our eyes.

Earlier this week at school, I watched my son tap a classmate on the shoulder in order to get her to get the attention of a second classmate, from whom he wanted to borrow a crayon. He was blatantly ignoring the teacher, but the string of desire, organization and social skills that he had to put together to do that made me so proud.

It's things like this that we autism moms live for. It's things like this that make us cry happy tears—and it's happy tears like this that make all the tears of sadness a little better.

Jean writes a personal blog at Stimeyland and an autism-events website for Montgomery County, Maryland, at AutMont. You can find her on Twitter as @Stimey. Read more of Jean's work at Autism Unexpected in the Communities at the Washington Times.

-cl- 6/9/11


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Jean Winegardner

When Jean had her first child in 2001, "autism" was about the scariest word she could think of. Six years later when her second child was diagnosed with PDD-NOS, a form of autism, she was just happy to have a word to help him get the services he needed. Her autism journey has been full of tears, laughter, love and at least one attorney.

Jean blogs about her life with her autistic son, Jack, on her blog, Stimeyland. Her two neurotypical children, Sam and Quinn (one older, one younger than Jack), make frequent appearances there as well. Also at Stimeyland? Jean's quirky sense of humor.

She also runs AutMont, an events calendar listing autism-related events in Montgomery County, Maryland.

Raising a child with special needs is hard for so many reasons, but after living with Jack, Jean wouldn't trade him for anything in the world. Come along with Jean as she experiences the joys that come with parenting a special kid.

You can email Jean anytime at stimeyland at gmail dot com or follow her on Twitter, where, as "Stimey," she offers her world view in snippets of 140 characters or less.

Contact Jean Winegardner

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