Parents: Be Nice to Volunteers and Service Providers

Sometimes it feels like parents of children affected by Autism Spectrum Disorders are under the impression that the world revolves around them.

That's harsh, and as a parent of a PDD-NOS child, its hard to hear myself say.

I'm a father who thinks the world should halt when his son needs 30 seconds to formulate the answer to a question posed by a stranger. And everyone should be understanding (and not stare) when he has a public meltdown. So I speak from very very personal experience.

But us parents need to work on some personal, emotional self-control when it comes to dealing with those who are trying to support us. I often hear about school administration meetings that go seriously bad, and wonder if the attitude and approach the parents had in the conversation affected the end results.

My wife and I deal with a lot of parents. As the leader of for the past 3 years, we've met many many families, personally and via the Internet. We felt we could provide a positive and important service to the Houston Autism Community by hosting this group.

Within the first year, we really got a taste of what service providers and volunteers often experience. I was extremely surprised by the misdirected anger, frustration, lack of follow through, and the stream of unfriendly emails from members who just want to complain.

Believe me, I totally understand why our lives are frustrating. Our world is extremely challenging. Everything from accepting social friends, to judgemental family, to doctors and school administrators who won't take us seriously.

And our stress only compounds if our children have other issues, such as serious food or environmental allergies, sleepless nights, running/escaping, and dangerous climbing.

But when you encounter people who truly are trying to support you, show them some flexibility and friendliness! A volunteer or service provider is not your personal Autism-angst punching bag. They are not the keeper of your anger. Good volunteers are hard, VERY hard to find, and they are even harder to keep motivated when the bulk of interactions include negative feedback.

Nobody is perfect, so at some point, a volunteer or service provider is going to disappoint you. Hopefully, its nothing they did intentionally. And if it's something small ... let it go, don't even mention it.

If a volunteer doesn't live up to your expectations in some way, show them the patients and understanding you want them to show your child.

So when interacting with your support group volunteers -- the people that are excited to help improve the lives of you and your family -- consider the following suggestions:

- Say "Thanks" and "Wonderful job" once in a while. Volunteers crave approval as much as anyone. If they aren't getting paid, say thanks twice. Cookies are nice too. Tell them happy birthday when appropriate.

- Offer to help, and then FOLLOW THROUGH. They are counting on you like you count on them. If you say you're going to bring cups, bring the #@!$ cups.

- Do not reply to their emails with spelling corrections. A *GREAT* way to get rid of a good volunteer is to repeatedly point out that your education level is better than theirs. It doesn't make you smart or clever. It makes you a jerk.

- If a volunteer arranges coupon codes for products to save you money, don't accuse them of selling advertising or profiting from Autism.

- If you're child gets a booboo on the playground at a support group event, its ok. Booboos happen. Spray some neosporin on it to prevent a staff infection and cover with a band-aid. You know, parenting kinda stuff. Don't go off on the volunteer who arranged the meeting. If you need to threaten or sue, figure out who built the playground. Most of us volunteers are broke anyway.

- If your volunteers want to support a national fund raiser, don't send them a 13-page email telling them why they picked the wrong one.

- Running a support group cost money. We have bills to pay. We aren't trying to "profit off of Autism" by occasionally asking folks to chip in a couple of bucks. Its still cheaper than paying for group therapy.

- If a volunteer send a "Merry Christmas" email, say "Thanks" ... don't reply to explain why their religion is wrong. You won't convince them, don't try. Even though they believe in God, they are still volunteers who want to help you and your family. If you are that offended, quit the support group and find one that is Atheist based.

- If they work hard to arrange fun events for you and your family, don't reply to every-single-email with complaints about when/where/what doesn't work for you. Its impossible to plan perfect events that works for every single person.

- Support meetings can't be arranged next door to your house. If a social play meetup is 30 minutes from your house -- and improving your child's social skills are a priority for you -- you'll attend. Is getting out of bed at 8am on Saturday morning to benefit your child social opportunities REALLY that aweful that it warrants nasty emails to the organizer? Really?

- If you have ever enrolled your child into an organized playgroup/social training class, you know they are EXPENSIVE. Not everyone can afford them. So when a playgroup event is offered for free -- but requires a 30 minute drive, just go. Don't complain that it's not next door to your house. Just go. Or don't. Or start your own.

- If you feel things are really totally awful, volunteer to help out.

- If you ever think "I don't have time to help organize an event" remember that the volunteers are busy too, and probably have jobs, home responsibilities, and Autistic children.

- If the support group is total garbage, provides NO value to the community, and you find everyone that volunteers and all members to be completely insufferable ... consider getting a personal medical evaluation. Some experts believe that Autism has hereditary components that could be from either parent -- or both.



Joe is a User Experience Engineer, Front End Specialist and Application Developer for Bridgeway Software, Inc and part-time consultant for NGO and non-profit organizations in the Houston area. Joe is also a part-time Portrait Photographer at and organizer of the photography club. He and his wife Marty run the Support and Playdate group.













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