Tuesday, June 8, 2010

Outings, Travel, and Autism

Shannon Des Roches Rosa
www.squidalicious.com
www.canisitwithyou.org
www.blogher.com/blog/shannon-des-roches-rosa

We are adamant about taking Leo on as many excursions as we can, to stores, movies, restaurants, parks, and other destinations. He is an able-bodied and energetic boy, and he likes a good adventure as long as we respect the limits of his tolerance. Also, we want Leo to be a boy-about-town so he gets used to being part of our community, and our community gets used to him.

Outings aren't always easy. But I have no intention of leaving Leelo home when we might succeed. I do not care if other people think he behaves strangely or makes funny noises; as long as he is not harming or interrupting anyone, we carry on with heads raised, meeting stranger's stares with confident and unapologetic smiles that I will admit to having practiced in the bathroom mirror.

Here are some of the tactics that make excursions with Leo, and hopefully some of his friends, a bit easier. Please feel free to leave your own suggestions in the comments.

Go Early, Go Off-Season
We arrive at popular local destinations like the Monterey Bay Aquarium or Exploratorium right when the doors open, and we go elsewhere during summer. We do this to avoid crowds. Kids with autism don't always do well in mobs, especially if they are bolters who like to run away and disappear into throngs, cannot tolerate crowd noise and jostling, need extra time to navigate, have gear that requires extra space, or -- like Leo -- just take up a lot of room.

Plan Ahead
If you're worried about a new excursion, try searching the knowledgeable souls on autism and special needs parenting email lists (including lists for your destination), blogs, or tweets. Tell people what your child's needs are and ask after positive experiences. You should get some good suggestions. (SF Bay Area locals: see my favorite Bay Area Hikes with Leo, and tips for visiting the Monterey Bay Aquarium.)

Some museums and science centers have special events, extra hours, or will arrange special tours for visitors with special needs.

Be Open to Failure
Success to me means going out on top. When Leo shows signs of stress beyond that which can be cajoled or bribed with special-occasion treats, it's time to go. My son does not deserve to be someone else's cautionary horrorshow. I am okay with leaving theaters mid-movie if need be -- we can always come back later and try again.

Leo had a meltdown at Costco a few weeks ago. I had all three kids with me, it was the late afternoon witching hour, we took too long because I needed to buy too many items, and the checkout people were passing out balloons that I didn't want Mali to have. She started crying, Leo went ballistic: hitting, screaming, stomping. I'm not sure how we made it back to the car.

And we went back the next week and everything was fine. Because of our spectacular failure, I had learned what not to do.

Take Advantage of Anything That Will Make Your Outing Easier
If you don't already have a disabled parking placard (rear-view mirror hanger to use as needed) and you think you might ever need one, get it. In California, all you need is your doctor's approval, and signature on the application.

I haven't turned in our signed application, but there have been a few times when we had to do an emergency extraction of a howling thrashing boy, and it wasn't really safe for us to haul him across a parking lot. I really should get that placard, as should you. I know you won't abuse it.

Lots of places, e.g., Disneyland, have special passes for kids with autism or other special needs. Call ahead of time to find out what your destination can do for you. I am often pleasantly surprised by existing accommodations.

Have an Escape Plan
Park as close to your destination as possible. Disabled parking and parking in general can be limited at popular destinations, which is one more reason to arrive early.

If you're going with a group, consider taking two cars. It's nice if everyone doesn't have to leave because one child needs to.

Scope Out Quiet Areas for Recharging
Can you find the child with autism in this picture? This is Leo at the Monterey Bay Aquarium on a busy day, having some downtime so he can mentally recalibrate, and we can stay longer. 

A Quiet Space at The Aquarium

ID Your Kids
Few things frighten me more than the thought of my non-conversational boy getting away from me and being found by strangers, so I got him a med-alert bracelet from Oneida Medical Jewelry. He hated it at first, but as he can't get it off he soon tolerated it (this will not be the case for all kids, especially those with sensory issues). He outgrew it rather quickly, so I recommend a temporary solution like Safety Tats for backup ID.

I also tend to dress Leo in bright colors so I can spot him more easily, should he dive into a crowd.

Distractions and Treats
We always pack lots of Leo's favorite activities, so he'll have something to do if our outing involves downtime, as it does when eating at a restaurant. We keep a packed backpack in our car, as well as several of the compact kids' activity bags called My Busy Kits.

We keep the backpack and kits in the car. We want them to stay special, and thoroughly engaging.

If You're Going to Fly, Know Your Rights
I never pass up an opportunity to cite my favorite section of the U.S. Department of Transportation's official policy of Nondiscrimination on the Basis of Disability in Air Travel:
SUBPART C -- REQUIREMENTS CONCERNING SERVICES
§ 382.31 Refusal of transportation.

(a) Unless specifically permitted by a provision of this part, a carrier shall not refuse to provide transportation to a qualified individual with a disability on the basis of his or her disability.

(b) A carrier shall not refuse to provide transportation to a qualified individual with a disability solely because the person’s disability results in appearance or involuntary behavior that may offend, annoy, or inconvenience crewmembers or other passengers.
Being Around Excursioning Kids With Autism
I recently told the very nice salesperson at a destination gift shop that we'd arrived early because Leo couldn't tolerate crowds. Her perk turned to pity, and she looked at me like I'd said we'd accidentally run over a kitten. If my eyes had been daggers, she would now be perforated.

If you need to, remind people around you that kids with autism are still kids. That they might not look or act like stereotypical regular kids, but that no one should assume they need different treatment. I love it  when people talk to Leo like they would any other child, and understand that if they need to modify their approach, I'll let them know.

Good luck, and happy trails!

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A version of this essay was originally published at BlogHer.com