19 April, 2012

Autism Acceptance: Growing Up

I heard a crunchy sound from a mouth that should have been empty. It is a horrible feeling when I think one of my children has eaten something dangerous. We've been pretty lucky around here, the most inedible items actually swallowed aren't really inedible, the cut-off tops to strawberries, nibbles of wine corks, a little raw onion, a small piece of crayon; nothing really harmful at all.

So when I heard the crunchy, chomping-on-china-plates sound, I begged Jack to spit out what was in his mouth. He laughed as I followed him around the kitchen, and tried desperately to put my finger in the side of his mouth. Just as I was wondering how much worse it was going to be when he bit off and swallowed my finger along with the glassy sounding bit, he pushed a small white object out between his lips at me, and it bounced between my fingers and clinked like porcelain onto the floor. He smiled and ran across to the living room.

It was a tooth. His tooth, of course. He's still a kid who is going to lose teeth. All at once he is both too young and too old for that, but he's 11 1/2, so he is actually right on time to lose those molars. And whether I am ready or not, many milestones occur without regard for ability or disability. He grows physically, and changes mentally by the minute these days.

He's just at that point between being a little boy and a young man. In some ways, he'll always be my baby, just like I am my Daddy's "Jennyalice, " and Momma's "BabyGirl," but I need to remember that he is growing up. It's challenging sometimes to gauge things because his known abilities are so uneven and his expressive communication requires a patience on my part that I strive for rather than come by naturally. But even if Jack is not at grade level in math, it doesn't mean that he might not have crushes on girls, or start to have other new interests. We've already recognized that he is attentive to Myth Busters, and done with Dora.

I'm trying to stop using the word "potty," and use instead, "bathroom" or "toilet." I hold myself back a little bit when he is in front of his classmates before I smother him with kisses. When the topic of moving from one classroom setting to another came up at his school, I asked him what he thought, and what classroom he thought he should be in.

As a society we often infantalize people with disabilities, especially those people who do not speak typically. People who use AAC devices aren't always given credit for all of the nuance of thinking they may have because their device 'speaks' in straightforward, quipped language. And those who do not use devices at all are often thought to have no thought at all. In the absence of a clear, articulated sentence, it is still important, or rather, imperative,  to consider Jack's opinion first in any situation that involves him, and to be respectful to ensure that, as much as possible, barring safety concerns, Jack be in charge of his body and his actions.

It would be easier to push and pull him where I want, maybe. It would be faster if I made the choices: vanilla or chocolate, green or red, apple or pear. It would be convenient to use only my desires to dictate where we go and what we do next. I'm guessing this is just part of the parenting process in some ways, when our children are young we control most of their environment, and some of that control naturally falls away with a typical child who asserts themselves with voice or physical action. With a kid like mine sometimes you have to look carefully for the cues that tell you to step aside. The longer I have this job, the more I realize that it is my goal as a parent to teach my children to make good choices on their own, and to support them so they are confident in the decisions they have made.

And as they grow older, I will encourage both of my children to give thought to what they want out of this life.  As individuals they need to consider what is the best thing for themselves, for their family, and for their community with any choice they make. It may always be harder for me to tease out what Jack thinks is important, and to discover his desires, and I recognize that he may need help executing many of his choices.. but he deserves to be heard.

When all of those little baby teeth are gone there will be a precious, possibly-pimply, fuzzy, young man standing in my kitchen, and we should all want to know what he thinks.

a version of this post was the editor's pick at OpenSalon

12 April, 2012

Autism: Around and About and Aware

We are on week two of spring break around here, and my lovely pre-teen son is taking nicely to sleeping in until 9:30am (thank you to Sage who is getting my girl to kindergarten this week!) While it usually feels a little frantic and unstructured during spring break, this year feels like some mostly calm time I've been able to spend with each of my kids, and around visits to the movies, day trips and the museum,  I've been keeping myself busy.

It's Autism Awareness month. Since we are well aware of autism in this circle we have moved on to Autism Acceptance month instead. Thinking Person's Guide to Autism has a great "Slice of Life" series where we have given the same set of questions to autistics all over the spectrum. These are people in your neighborhood, in your classrooms. They work in the cube next to you, and skateboard at your local park. They are individuals, not statistics. Those 1 in 88s and 1 in 54s and all of that data that's been flying about? 'Those people' have always been with us, but we are getting better at spotting autism earlier, which will hopefully get everyone the support needed to be a happy, healthy, valued, and productive part of society. I know that "awareness" is still important because there are people that are ignorant, misinformed, or disinterested...even my spell check does not recognize 'autistics' as a word, and we have a long way to go, but we are focusing on acceptance around here.

I have another post up at Dandelion. I'm a regular contributor there,  or at least I am when I can get my act together. Dandelion is a great resource for Bay Area parents, and is not just autism focused.  I write there about three times a month. They have a very active events calendar, and happily take new events, so if you have a special needs benefit, auction, speaker series, or sibling group, head to their calendar and ask to have it added.

Last month Care.com asked me to write an article about Learn the Signs, Act Early campaign that the CDC has put together. It can be very emotional when you think your child is developing differently than other kids, but the important thing to do is keep your head on and check-in with a professional who can complete an evaluation of your child's development. With good information you can get your child every support he or she needs. I have more to say on this, and some good tips that I figured out when we were still figuring out our boy when he was very young.

The wonderful Ellen Seidman, who writes Love That Max turned over her Parents.com column this month to celebrate Autism Awareness/Acceptance. Shannon wrote a lovely post about Parenting Autism in the iPad and Internet Era.
Ellen asked me so great questions, including what are three things I want other people to know about my kid. My number one answer was: “Just because he can’t talk doesn’t mean he can’t hear you. Kind words, mean words, he hears all of it. With my son, and with any person with disabilities we should start with, “Hello.”” You can read the entire post here. 
I'd like to thank Ellen for hosting us in her column. I feel lucky to have her on "my team."

And I am nominated at Babble.com as a Top Autism Blog for Parents. Thinking Person's Guide to Autism has been nominated in the "write-in" section too, so stop by and give us a thumbs up if you think jennyalice.com or thinkingautismguide.com serves parents well. Maybe one of these days I will either a) make it on a list that does not require someone to vote or b) stop feeling like I need to chase votes once I am on a random list. Next year I am going to create a list of Top Autism Blogs in My Family. I am pretty sure I will make the cut :) I was happy to see so many of my fine friends and their amazing words honored already, and knowing that we are all serving this community is a great feeling.

There are lots of other exciting things in the works. TPGA  has been all over the radio across the country, so if you thought you heard Shannon Des Roches Rosa, you probably did. And we are working on more venues for book readings. I was thrilled to find out last week that an education class for teachers is using the book as classroom text. If you know anyone who is interested in using the book as a text in an educational setting please contact me: jennifer dot myers at gmail dot com. I am happy to help get the book out to you.

My voice is hoarse and my house is a mess, but my heart is full and my kids are happy.
Be well friends.

02 April, 2012

Autism Starts with A

Awareness is understanding my son's struggles. It is determining all the ways he has to work harder and has to adapt to get what he wants. Awareness is seeking resources to help him gain skills, and it is patience, and learning. Awareness is eventually recognizing your own prejudices and privilege, and gaining new perspective.

Acceptance is 'listening' to how my son communicates, and waiting for his answers, then incorporating his desires into our family decisions. Acceptance is assuming that he has an opinion, is an individual, and is more than any label could constrain. Acceptance is reframing what I thought I knew about myself, and using new language without thinking about it.

Acceptance is shining light on the shadows of my preconceived notions of parenting, and what I thought his life would look like. Acceptance is loving every bit of him, knowing that one cannot, and that I would not, simply excise bits of any person to shape their mind to some measure of "normal."

Acceptance is supporting him, not so he can become who I want him to be, but helping him to become the young man he wants to be.

Paula C. Durbin-Westby Autism Acceptance Day
Steve Silberman Autism Awareness is Not Enough. Here's how to change the world.
Kassianne S. Acceptance vs. Awareness
Thinking Person's Guide to Autism Slice of Life: Aisling Alley
Lynne Soraya Stigma and the “Othering” of Autism
Mama Be Good You Can't Hate Autism and Expect Acceptance

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