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“They’re just waiting and waiting and waiting,” says George Carlin, describing a dog’s life. “Waiting to come in, waiting to go out, waiting to eat, waiting to crap, waiting to wake up, waiting to sleep, waiting to go upstairs, waiting to go downstairs . . . waiting to wait.”

In some ways much less funny, this life of waiting has parallels in our autism world. We’re waiting for a lot of things, too. Waiting for diagnosis. Waiting for schools to create services and classrooms conducive to ours kids’ learning needs. Waiting for new treatments. Waiting for legislation requiring insurance coverage for diagnosis and treatments at all stages of life, not just a few childhood years. Waiting for respite services. Waiting for answers on cause and prevention. Waiting for the next developmental milestone that will make our child’s life easier, and ours. Waiting for autism awareness, acceptance, inclusion, and action.

The similarity to a dog’s wait ends there. We don’t lead a dog’s life, “forced to wait for something to happen that they can get it on!” says Carlin. Waiting to wait is the quicksand option for autism parents.

Many are the autism parents who’ve told me they’ve learned to tap wells of patience they never knew they had. But for all our patience, we can also be an impatient bunch. In typical usage, impatience isn’t considered an asset. But for an autism parent, it can be. When redeployed as an energy source, impatience can be directed into progressive action, even as we wait.

We can advocate. We can lobby. We can support, promote, believe, campaign and sponsor. We can create. We can unite. We can thereby help shape school programs, community resources and legislation. But we can’t take our eyes off the prize—the child, who with every sunset is one day closer to adulthood. For them, there can be no open-ended waiting. So the most productive question you can ask is, what would I do for my child or student today, next month and next year if I thought those services, treatment and legislation were never going to come?

“Do what you can, with what you have, where you are,” advised Teddy Roosevelt. Every parent in every generation in every situation has the power to make this no-nonsense choice. That power can be enormous, forcing us to laser-focus on rooting out available resources, on utilizing or modifying a child’s environment to his or her advantage, on assembling productive teams and partnerships.

A little perspective on resources: my brother and I loved trading “When I was young, we didn’t have _______” witticisms. Our favorite was, “When I was a kid, we didn’t have water. If we wanted a drink, we had to smash the molecules of hydrogen and oxygen together ourselves!” Bryce’s autism diagnosis came at a time when there were no family-friendly books about autism, no iPads or apps, no sensory-friendly movies or shopping hours, no summer camps for kids with autism. Our insurance didn’t pay for a penny of autism-related therapies, nor did we get a minute of respite care. Yet we persevered in ferreting out the best of what was available, smashed those molecules together by keenly observing what this child needed and pursuing it, regardless of label—through early childhood, through K-12, through college and on into the workplace.

If you need help with the focus part, children with autism often have astounding powers of concentration on subjects of interest. They unearth mountains of information, from the obvious to the obscure. When seeking the knowledge they want, they are ferociously self-motivated barrier-removers and problem-solvers. Watch them. Listen, ask questions, engage, seek surprise. Let them teach you how it’s done.

And let your dog be the one who’s good at waiting.

© 2017 Ellen Notbohm

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One Response to “George Carlin’s “waiting to wait,” and why autism parents can’t do that”

  1. Alessandra Lennis says:

    Ellen…this is so true! I have had to learn to advocate and fight for my daughter…at times it can be so exhausting and I resent having to constantly go into battle…but I keep at it like a dog with a bone (pardon the dog pun lol) because my daughter needs me to do that and like every parent I love her with all my heart and want the best for her. But on that point sadly it’s not often the case of what’s the best but rather how can I make the best outcome out of an education system that doesn’t cater to her needs or a service that we can’t acess or where there’s no funding or services that we need that are available. So yes as a parent of an autistic child you can’t just wait…you have to push and continually advocate and sometimes come up with some kind of solution…as they say “necessity is the mother of all inventions”. It’s exhausting and sometimes you feel like you’re banging your head against a brick wall and getting nowhere…and yet you can’t give up and nor can you wait. For all the parent’s out there that can relate to this my advice is if you’re at the end of your rope take some time to gather your energy but unfortunately the truth is you’ve just got to keep at it…keep persisting and advocating and down right fighting if you have to…it’s sad that we have to but your child needs you to do it. Hopefully together we can have a stronger voice but sadly we often feel like we are alone and no one is listening. Pick yourself back up and just keep trying…our children are relying on us. All the best to every parent who reads this…my heart goes out to you.

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