the autism lunch tables

It’s been kind of messy in my corner of the online autism world lately. Some big events happening and communities imploding and just… not good stuff.

I’ve written before (somewhere that I apparently can’t find) about trying to find my “autism lunch table”– a place to sit as a new kid in the cafeteria.

Don’t sit at the Autism Speaks table; all they talk about over there is the horrors of autism and how it will ruin your family and your child is now lost.
Don’t sit at Jenny McCarthy’s table or at any of the surrounding biomedical tables; the pseudoscience and anti-vaccine rhetoric is straight-up medically dangerous and they all feel like their kids need “fixing” and autism is a fate worse than measles.

Those I get. But then–

I don’t want to sit at the table of someone who says that, because they themselves are autistic, they automatically know what is best for my child. Not when that person thinks their life experiences will supposedly over wash the 3 years I have spent invested in getting to know my girls, their needs, their personalities, their quirks; the time I’ve spent learning to trust my own instincts as a mom (and the same goes for M). Nope. I will listen to them, of course. They’ll have insights I won’t have thought of. That’s kind of how I think about talking to anyone– people come at things from different angles. ANY person with a vested interest in my kids’ well-being who wants to have a respectful discussion with me is welcome, and I will always strive to include autistic adults in that group because there would be a huge hole in the conversation without them. But their thoughts will accent and not replace my decision-making as a parent.

I don’t want to sit at any table that removes a piece of anyone’s humanity and right to be frail, need support, or make some mistakes.
I don’t want to sit at any table that refuses to acknowledge that autistic people have value and gifts to share and have autonomy and have the right to communicate and make decisions and can enhance the lives of the people around them rather than just being some sort of energy drain on their pitiable families.

I don’t want to sit with people who think their perspective is the only one necessary in a conversation about autism. Not with the parents who forget to take their child’s perspective and can’t see past their own stress to try to understand why their child is “acting out;” not with the autistic self-advocates who don’t think parents should have a dog in the race. We get tired too, folks, we get burnt out and autism is hard for us to manage sometimes. It doesn’t mean we think our children are burdens. There is absolutely no rule in parenting ANY child that removes a parent’s right to complain, be frazzled, and feel overwhelmed– just like there is no rule that any child HAS to operate outside the scope of their abilities to make the act of parenting easier on their parents.

I don’t want to sit at any table that refuses to acknowledge that the parents of autistic kids (and siblings too) may struggle with the energy it DOES take to put yourself in the position of caring for, loving, and supporting a person whose neurology is so different from their own that it requires a full day of being “on” on someone else’s wavelength. Because that’s the thing here: autism doesn’t mean a person is hard to deal with. But the duality of an autistic child with a non-autistic parent means that the parent is living their whole life in autism land, which is not a place where their brain naturally lives. Imagine being underwater and following a fish around all day– a fish that does not pause to wait for you as you come up for air every ten seconds; a fish that likes to swim as deep as possible some days. I am a person who needs a lot of downtime and mental breaks, so it’s no surprise that a mere two hours home alone with my girls on a day where Chicken is trying to yank the dog’s tail and jumping on the couch while Ham rips pages out of books and eats them (yes, these are real things that happen) I just get wrung out. That doesn’t mean I don’t think my kids are amazing, bright little hilarious sunshine-y things (I would hope anyone who reads this blog and knows me already knows how much I love these kids). It means that they are human beings who do human things. It means I am a human, too, and frankly, it blows my mind when self-advocates get angry at any parent of an autistic child for saying “oh my sweet baby corn I am autismed-out today.” I mean, come on, raise your hand if you have zero memories of ever exasperating your parents in your lifetime. Right?

You know where I want to sit?

I want to sit with people who see my children as whole and valuable people– like how any child should be viewed.

I want to sit with people who value and respect the autonomy of people with disabilities– like all people deserve.

I want to sit with people who support me and understand me when I break down and admit to being so, so at the end of my rope, sometimes because my kids were maniacs that day, sometimes because I was just grumpy that day and didn’t have the energy for the level of shenanigans to which I am normally adjusted– like all parents need.

I want to sit with people who celebrate the little victories with me because they know little victories are often huge.

I want to sit with people who have a frame of reference for the experiences we share as “autism families” because sometimes it’s refreshing to not have to explain things.

I want to sit with people who have no frame of reference for our crazy therapied life but who want to learn more because I’m happy to talk about our life and our awesome kids.

I want to sit with people who will love my kids, even if from a distance and never up close.

So if you think that’s the table for you, too, then come on over. The chairs are all sticky but I snuck in some booze. *clinks glass*

one year of autism

It’s been exactly a year. A full year down to the minute, since the phone call I’d been waiting on, when the doctor told me what I already knew: “they both meet the criteria for an autism spectrum disorder diagnosis.”

I’ve been trying to find the exact right way to commemorate this event. What sort of reflective blog post should I be making right now? What is the “point” of marking this anniversary? What exactly do I want to say about it?

What I’d be writing about isn’t one year of autism, but one year of life.

It includes all of my fears and the process of slowly resolving them and accepting my unique and wonderful girls for all of who they are.

There are the many therapists who have been in and out of our home, including the ones we haven’t seen in months and the ones who joined the team just recently. I’d highlight the primary behavior therapists, who sat with me and agonized over how, HOW to get through to Ham when she checked out and ignored us during tiring therapy sessions, or how to help Chicken meet her sensory needs so she would stop chewing on and climbing on everything. Those therapists have stuck their necks out to advocate for my girls and have celebrated even the little victories (because little victories are big victories in disguise). For real, if it didn’t completely violate their privacy, I’d be shouting their names from the rooftops and telling everyone out there to get these specific therapists for your kids. They’re doing great things in the world, and they’re doing it with respect and reflection, which is rare.

There are the many therapeutic environments in which we talked about milestones and picked-apart behaviors to try and understand them… and then the non-therapy play spaces like the zoos, playgrounds, museums, aquarium, and nature trails we walked with friends, where we saw the skills they developed in therapy translate to the big wide world.

There are our wonderful and amazing friends whose children have been my girls’ playmates even when they hardly noticed other kids around them. Friends who I have talked to while working through the messy and complicated coming-to-terms phase of this journey (yeah, I know, it’s so trite but it really is a journey), and friends whose children have been so beautifully accepting and engaging with my girls. How much credit can you give a 2-year-old who works hard to try to get the attention of another 2-year-old that’s completely ignoring them? You can’t measure it. Children come in a beautiful package before they learn to be intolerant, and the people we’ve surrounded ourselves with over the years are, unsurprisingly, churning out some of the best little humans I’ve had the pleasure of meeting. (Can I just tell you that our friends’ daughter just got two dolls for her birthday and named them after our girls, who didn’t even make it to the party? So heart-meltingly sweet.)

There are the people and systems that have been more difficult to work with. I get as frustrated and whiny about such things as the next person, but I firmly believe that difficult people are put in your path to teach you to learn how to deal with all sorts of personalities. It’s an important skill. I could fire someone now and choose a different professional, but when my kids are in school there will only be one classroom teacher, or one special ed coordinator, or one school principal, and we just might be stuck with them. (Luckily, we’ve had very good luck with our current set of professionals.) Similarly, some programs and systems are a baffling nightmare to work with, and I’ve definitely learned a few tricks along the way– mostly, “take notes on everything all the time,” “get confirmation codes,” “save all your paperwork,” and “know people who know tips and tricks.”

There are the new people I’ve met this year– other special needs parents of autistic kids, kids with speech delay, or kids with medical complications, or sometimes any combination of those things and more. There is nothing like having a network, and even more centrally, a network of people who “get it.”

There has been the benefit of slowing my expectations for my girls. Not lowering them, but slowing them. I still move a million miles an hour, buzzing with anxious energy, and I don’t get enough sleep, but I am, in teeny-tiny increments, dipping my toe into “just effing relax already” territory. I can still research the hell out of everything if I need to, but in the meantime, I have to let my girls take their time. This counts for long-term development (maybe we’re not ready for potty-training quite yet) and the short term (processing speed). I can’t tell you how many times we’ll tell Chicken to “say bye bye” as a therapist is leaving while she stares blankly at them, only to hear the door click closed and then a small “baaaaaaaai.” When we left my parents’ house today, Chicken spent the first five minutes of the drive home waving slowly and saying, “Bye to Nana,” over and over. It’s in there, but in the moment, sometimes she just can’t get it out. That’s okay. We have time.

We’ve learned a lot– M and I both. About autism, about special needs, about realigning your expectations for your kid when you realize your kid is running on a totally different operating system from you but the system functions just fine. And boy, do they have funny and brilliant little minds.

I’m writing all of this from a very “me, me, me” perspective, but that’s okay. To my girls, there’s no significance to this anniversary– this was just a year of doing what they always do. They’ve been playing, learning, growing, and connecting. The changes we’re seeing in them are incredible, but not because we’re somehow erasing autism from the equation.

If they have autistic brains, then they will always have autistic brains. That doesn’t mean they’ll fail to connect with us or struggle to make friends– because they have friends and they do connect with us. It doesn’t mean their lives will be plagued with sensory-seeking behavior, because we help them accommodate their sensory needs as much as we can and we’re already seeing their self-regulation improve. It doesn’t mean they won’t communicate, because they communicate already (behavior is communication!) and they’re continuously building verbal and non-verbal communication skills. They can be different! Different is okay. Different is beautiful.

I’m looking forward to another year with my beautiful girls, full of crazy hats, tutus, happy squeals, dancing, and yes, probably a lot of (almost) three-year-old attitude. (Lord, beer me strength.)

So my only message to myself one year ago: just keep going. You’ll get there when you’re ready. They’ll be okay. Also, they’re going to get really, really tall.

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The silliest of hams, laughing and being silly with her tiny Bert and Ernie dolls clutched in her little fist.

 

(To see where we were almost a year ago, click here.)