Start with compassion
Posted on: October 8, 2010
I had a really great conversation this week with Lorri Park at the Colorado Autism Society. We know that we must approach our auties with compassion and no small amount of patience. But she said that our compassion must extend in all directions. We have to include everyone in our capacity to be patient and understanding. This is going to be a bit of a rant, so bear with me.
We must be patient with our auties. We must understand that, just because they view the world through a different set of glasses, their view is no less valid, nor is their desire to connect with it. We must involve them in the world, provide opportunities for interaction, connection, contact. And, yes, compassion for them includes letting them fail sometimes. Chris still doesn’t have a fantastic facility for maintaining conversations. That doesn’t mean I hide him from them. On the contrary, I try to find honest (and sometimes “safe”) forums for him to practice.
We must be patient with ourselves. The families of autistics are often spectacles. That’s just a fact. Autism can make us want to give up human contact ourselves because it can be so darn difficult to enjoy a nice meal in a restaurant when you have to calm somebody who gets anxious and has outbursts in unfamiliar places. What’s the solution? Go out more…not less. Start in safe places, like Beau Jo’s pizza. The Autism Society of Colorado has a Beau Jo’s night the first Wednesday of every month. They expect families with autism. It’s safe, and it’s a way to start making connections (you included) with people in a safe environment. And we must realize that, just because we do what we have to do because this is our beloved child/sibling/spouse, we are not saints, perfect or robots. As much as we love them, we’re not specialists in intervention therapies. We’re parents, siblings, caregivers. We are human. We have a list of people and facilities in the sidebar to the right who can help provide a sanity check. Use them: the Autism Society, the ARC, Club 4 Kids. If you have others and want to share, leave a comment and let us know! It’s OK not to know everything, it’s OK to lose your patience, it’s OK to lose your marbles for a minute or two. No, seriously. Think about what you’re up against. It’s OK. Check out the Gimme a Break program at the Autism Society. Have a movie night while somebody trained in autism respite care watches the kids. I promise, the house will still be standing when you come back. Or bring them to Club 4 Kids (they’ve made it plain to me that they welcome kids on the Spectrum). Let them enjoy a safe evening with other kids while you recenter yourself. It’s OK. Nobody should expect to be able to hold back the floodwaters 24/7/365.
We must be patient with teachers and special ed staff. Think about what they’re up against: increasing class sizes, job insecurity, parents yelling on one side and the principal yelling on the other, low wages, long hours of teaching and planning and grading and conferences and field trips and meetings and ongoing training. Yet somehow, we all remember at least one teacher whose dedication sparked for us the love of a subject we never thought we’d love. They have a gift, a passion to reach out and touch the minds of their students. With shrinking education budgets, they often buy their own paper, chalk and tissues for the classroom (on a teacher’s salary, mind you). They work tremendously hard to make a difference in our kids’ lives.
We must be patient with strangers. We’ve all seen the air quotes around autism. We’ve seen the rolling eyes, heard the indignant humphs and the “why can’t you control your own child?” comments. Yes, it’s shortsighted, thoughtless and inconsiderate, but if you think about it for a minute, how much of their outbursts are just as socially inappropriate, reactionary and fearful as the stuff your child does? They don’t understand, either. There’s still a lot of misunderstanding about autism, what it looks like and what it means. Unfriendly strangers deserve the same patience and understanding we extend to other people. Remember, we must expose people to our kids with autism as much as we must expose our kids with autism to people. We have to get used to each other. The learning opportunities abound (she says, waving her arms). Change is scary, but that doesn’t mean it must be avoided. Everybody has to learn to live together. It’s a small planet.
The Denver Autism Wheel 
October 22, 2010 at 5:38 pm
This is a good post, and I like that you touched on how the parents need to make connections, too. I think the part about being compassionate with ourselves is one of the most important pieces, as we can lose ourselves very easily in the act of taking care of everyone else all the time.
I have a group of about a dozen other autism moms who I socialize with on a very regular basis, and it has been such a lifesaver!