Sunday, June 26, 2011

Help, I need somebody. Help, not just anybody.

Having a child with autism can be a grueling, long, hard slog.  We’ve been grappling with our son’s diagnosis for ten years now, and I can tell you that it never gets easy.  It can be more manageable at times, but it’s a constant stress in our lives.

I see my friends and family wanting to help, especially during times of crisis. Sometimes, though, people just don’t know how.  So, I’ve come up with a short list of ways to help families coping with autism. (It’s especially important for families who are coping with a newly diagnosed child, or a child in crisis.)

What’s the first thing people do when a friend is diagnosed with a debilitating illness?  Deliver food.  It’s the same with autism.

When my son was in the hospital the first time, our neighbor cooked us a delicious lasagna.  I can’t tell you how many meals we got out of that dish. Heat ‘n eat, baby. Awesome.

You’d think that we’d have lots of time to cook for ourselves, but the day quickly becomes consumed with other things. I’ve discovered that worrying takes up an enormous amount of time. (Check it out: Jump start my heart)

But you don’t have to wait until someone’s in the hospital to cook a nice meal.  Having a child with autism can make fixing a meal a stress-filled juggling act.  It’s hard to cook the eggs when you have to have one eye on your child at all times.

Just remember… nothing says “I’m here for you” like a homemade sausage lasagna made by someone of Italian heritage. Abbondanza!

 Check-in often with a phone call. One of my best friends calls me every day during crisis periods.  When he’s not in crisis, she calls at least once a week.  We don’t even have to talk about autism, but having someone to listen to you really helps.
She says “yes”, “uh huh”, “it sounds so hard”, and “that’s awful” a lot. I know she’s listening.  It helps.

After all, my husband can only take so much of my constant worrying and needling.  And re-visiting.  And re-hashing.  And hand-wringing. You get the picture.

Volunteer to babysit.  Taking care of a loved one with autism is draining, physically, spiritually, and mentally. An hour to sit in a room by yourself is a luxury.  (Some days just going to the bathroom without worrying is a luxury, to be honest.) 

Ask your friend to teach you how to properly supervise their loved one and then show up as often as you can.  Personally, I find the weekends to be particularly draining, since we have all day to try to entertain Conor. 

If you’re uncomfortable watching the loved one with autism, or this person has significant behaviors, babysit any typical siblings.  It’s a gift to know that my youngest son is off having fun on an outing.  I don’t have to worry about Conor aggressing toward him or how much time Aidan’s spending in front of the TV or worse, the Wii.  And it’s respite for Aidan too.

If you can’t afford time, maybe you can afford some money.  The ugly truth about having a child with a disability is that it is ex.pen.sive.  Often, one parent has to stay home to manage things.  Good-bye second income.

Therapists, doctors, and medications cost money. Even babysitters and day care charge more for a child with a disability. If you’re uncomfortable writing a check, buy a gift card to Target or the local grocery store. Every little bit helps.

Buy the dad a punching bag.  I hear guys like to punch things, and I’m sure he could use the therapeutic benefits of really taking a wack at something.

If you’re uncomfortable giving money to the family, give money to a charity of their choice.  I’m always grateful when my friends and family support the organization that I volunteer for… Pathfinders for Autism. When Conor was diagnosed, I wished that there was a 1-800-mykidhasautism number so I could figure out what to do.  Lucky for me, someone had already thought of it.  Pathfinders for Autism runs a free resource center for parents, caregivers, providers and individuals with autism.

If the family isn’t involved in a specific organization, try Autism Speaks, the Autism Society of America, Talk About Curing Autism, Generation Rescue, the Autism Research Institute, or a number of other organizations helping our community.  Try to find one that fits the philosophy of the family you’re helping. 

Make sure you let the organization know who the gift is honoring and how to send them a notice to let them know you gave in their honor.

If you’re comfortable, invite the whole family over to your house for a casual get together. Ask what to expect, whether you have to fix special food, or how to make the individual with autism comfortable.  (And have lots of wipes available.)

It may only last 15 minutes, but hey, you tried.  And next time, it might last for 20 minutes.  And then 30 minutes.  If it weren’t for the McGurkins, honestly, we’d never go anywhere. 

And please, please, don’t follow the kid with autism around the house, turning off all the lights and ceiling fans that they’ve just turned on.  Just pay the extra nickel to the utility company and consider it a good deed. 

(Seriously, this happened to me.  We never went back.  It’s not worth the headache. That poor dad’s OCD was as bad as Conor’s.)

You can never go wrong with buying a beer.  Or a glass of Pinot Noir.  Nights out with my girlfriends are a guilty necessity.  We all need to blow off some steam and decompress after dealing with our loved one all day.  So yes, I know you’re tired at the end of the day, but just imagine how your friend feels. 

So do what I do.  Have a shot of espresso and put your game face on.  You can still be in bed by eleven.  If you want to, that is.

Honestly, just ask how you can help.  Chances are, just listening is enough.

No comments: