Hi, and thanks for reading my new blog. I’ll share why I am starting it and explain the title in a second.
First, though, are the caveats and rules: It took me a long time to convince my 11-year-old autistic daughter that this was a good thing, that I wasn’t going to cost her friends and “social standing” in her tween world. She loves the idea of me sharing what I know about her and our world, it’s just that she is already in “check” when it comes to navigating social situations, and I don’t want to make it checkmate. Those of you who know me in “real life” know that I share a lot on my personal Facebook page, but on here and the Please Bring Tacos page, I kindly request that you don’t mention my child’s real name or her/my last name. Everyone can call me Kath here. Hi everyone.
My 11-year-old, Jewel (her choice of an alias, because it sparkles, natch), is an only child of two late-in-life parents with longtime careers. My husband and I don’t have a large social circle, and Jewel was not around a lot of kids except at the park or beach. When she went to preschool, it became increasingly obvious to those now seeing her in social situations that this little gal was not like the others. She talked, but was difficult to understand, and would check out (what I called her “fugue state”) whenever she chose not to engage, which was often. It’s hard now to look back on my naivete, but I figured that was typical.
What I know now is that she is non-neurotypical … simply put, she has to work every day to make the connections, read the cues and take part in the casual interactions that come naturally to others. And we need to enlist the help of educators and others to ensure that work is rewarded by using the right tone, stretching her but not to the breaking point and understanding how she sees the world. We have been fortunate in the last two to three years to find a “push-in” services program at her elementary school, in which she has made great strides.
I thought then the hardest part would be dealing with a daughter who had autism. Au contraire, the hard part was, is and will continue to be educating others about her and autism, such as the best approaches (I often tell people she needs to feel “safe, accepted and competent,” a phrase I got from the Autism Discussion Page on Facebook, which has a wealth of information), looking at the causes and not the effects of her actions, and especially, having empathy and humility.
After I finally accepted she was autistic, I spent a lot of time researching, crying, cribbing, writing, lecturing, crying, tossing and turning, making angry phone calls, studying the law, crying, pleading and scolding as I advocated with school officials and others to get Jewel the IEP and services she needed. The two most important takeaways: 1) services aren’t a gift bestowed by the public schools because they feel generous, they are required by law under the Americans with Disabilities Act. YOU have “hand,” YOU have an equal voice — don’t ever let them convince you otherwise, and 2) if you can’t laugh through the tears, you are screwed. As the great poet Elvis Costello once said, “I used to be disgusted, but now I try to be amused.” Humor will be your salvation.
Of course, as a longtime journalist, I didn’t want to keep all this research and knowledge to myself. Parents began to seek out my opinions and guidance on issues affecting their own kids, especially the IEP process, and then educators and others touched by autism did too. This is my way of giving back, so feel free to ask me anything and I will do my best to answer.
In Jewel’s case (all autistic people are different), she has little sense of personal boundaries and the “natural” give and take of conversations; to say she launches into monologues would be an understatement. She considers herself the leading advocate for the right of children to be equal to adults, and offers her sometimes ill-timed opinions, advice and requests constantly (“We would like a booth, near a window, indoors, preferably out of the high-traffic areas,” she can casually tell a restaurant host before I get to him or her). Sensory overload is a huge issue; she has to take apart a scene into its various pieces to deal with it, and gets overwhelmed at times, though not as much as she once did.
As for dealing with crowds and/or waiting in long lines … imagine trying to individually process every face, everyone’s outfits, every smell (ew!), all the sources of noise, all while touching others in confined spaces and standing for a long period of time, usually outside (her intolerance for being hot/in the sun is one of her biggest stressors). I have all kinds of tips and strategies on how to avoid crowds and plan for public outings to help avoid meltdowns.
Adults love Jewel for her vocabulary and smarts. And yes, as one woman recently pointed out, “She doesn’t look autistic.” Because, you know, it must be a lie if she doesn’t look it, and autism has a look (that’s my sarcasm, which I can’t use on Jewel because of her literal thinking). Her peers fall into three categories: accepting her, ignoring her or goading her. I tell her to focus on the accepting ones, and thank their parents profusely for raising kids with open hearts.
Oh, why “Please Bring Tacos”? Jewel left me the command note seen in my logo one day and I love it. Also, we are all in this together, so there better be tacos. Preferably delivered by the pool.