We often get asked why we continue to head out to dinner, festivals, events, cinema, and events where large amounts of people are. We get... "Why do you guys put yourself through this?" "Is it fair to get Jenna so upset? "Don't you get embarrassed?" "What about other people around you?" "Shouldn't you stick to McDonald's?"
To tell you the truth we ask ourselves similar questions too. It's tiring, the other three kids get very overwhelmed and at times it's very expensive. If you don't get the prep right, potential behaviors. If you get the social story wrong, potential behaviors. If the event isn't how Jenna expected, potential behaviors. But still we head out most weekend and look for new opportunities, fun and family experiences.
So tonight I thought I'd share the top five reasons we have intently decided to go outside.
I work in the disability sector and the heartbreaking stories I get told frequently about individuals never experiencing a holiday, going to the movies or going out to dinner breaks my heart. I want Jenna to have the same greater opportunity and experiences than I was afforded (and I had plenty). We keep looking for a peek experience that resonates for her. We get it wrong more than right but we keep getting back on the horse so to speak, again, again and again.
Normalization (both for us and our princess)
Similar to above, but so important. I want Jenna to first be a kid that lives in the big city. We need to feel "normal" and feel like a family that does "normal" things too. When life gets tough we go indoors and lock ourselves away. It's easier that way. We are private people and get our recharge at home (nice wine, movie on our large couch). It's often a hard choice but we deliberately choose to go outside and do "normal" everyday family activities. This point is by far the most important for our other three kids, often feeling ripped off, we go out for them.
Jenna can learn appropriate social behaviors
Our princess goes to intensive therapy multiple times per month to learn how to behave socially. So we go out and practice. It's hit and miss, but a valuable safe testing zone for Jenna (because we are with her). We are constantly scaffolding for Jenna, breaking down tasks and explaining expected norms. All this training needs to be tested, rather than setting safe easy places we just hit the town and for the most part we "see what happens"
Others can be blessed by her nature and kindness
A secondary benefit is that other people see Jenna's heart. Whether it is asking to pat a dog, introduce herself to a family with a 2-year-old or just see her dance and be happy. Her excitement if infectious. These are the times that autism is a distant second to a caring young 10-year-old girl.
Educate others about autism
When the crap hits the fan, we choose to educate rather than to get embarrassed. This choice really sucks, because its not about embarrassing the ignorant or shouting at the arrogant. We choose to take the time to explain the reasons for her behaviors. We take ownership, apologize and then we try to educate.
I have listed the top five, but this is not why we do what we do everyday.
Truthfully we have fun, our philosophy is to remember the highs and try and forget the lows. This choice makes every time we go outside a memorable day in a fantastically good way.