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10 Reflections About Advocacy: BlogHer, Bellydancing, Catastrophe, Keeping the Faith

I was very honored to be asked to speak on a panel about advocating for kids with disabilities on an August 2nd panel at the "Healthminder" day at BlogHer, with Carol Greenburg of Brooklyn Special Needs Consulting and Tanis Miller of Attack of the Red Neck Mommy. Just as when I'm teaching, a couple of insights and things I wished I'd said more eloquently occurred to me after I'd left the room (on the 2nd floor of the shiny Avenue of Americas Hilton rather than a rather worn classroom) and was heading back across the river.

1) Advocacy is about stories and story-telling. (Thanks to Cathryn Wellner of StoryRoute for this!).

2) We make mistakes, we're allowed to make mistakes in advocating for our children, we have much to learn from them. For instance, I was so convinced the BAC was the worst place for Charlie and he loves it.

3) We're human beings and emotions do get the best of us. So showing emotion at IEP and other school meetings through tears or feisty speeches in which you find yourself proclaiming "What you do to the least of us, you do to me" has its uses and doesn't have to give "them" the advantage over you. I delivered up that line at a "reevaluation" meeting with the well-regarded school district that wanted to pack Charlie off to a temporary residential placement in a performance that was frightening, highly unrecommended by professional advocates, very honest and may have left school personnel thinking "she must be mentally disturbed."

4)  Advocating for Charlie has taught me to be a bit surer about myself and doing what I'd prefer to do and not.

5) As an example: I prefer not to bellydance on request (I was among a bit of a minority of 2 in the panel following ours in not donning a spangled scarf; the reasons are more involved than anyone may wish to hear so, 'nuff said!)

6) Avoid catastrophic thinking!  Things are manageable, even when your child just broke the back window of your car with his face. 

7) Advocacy is about keeping the faith.

8) Advocacy is based in hope and that we can make things better and not only through our efforts, hard-thinking and tenacity, but through our love. 

9) Advocacy means you will occasionally be a pain-in-the-ass. Sometimes we are pains-in-asses, make people uncomfortable and have to live with the fact that we have made people uncomfortable and deal with the consequences and not be defiant about it.

10) Down but not out. School of hard knocks, is us.

I have had a diagnosed mental illness since I was 13 so the school personnel would be correct. (More about this at some point down the line.)

Charlie really missed me not being home to greet his school bus on Thursday. He cheered up on a bike ride with Jim and was a little troubled all evening, no matter how many times we said "we stick together!". He cried on and off and we were quick to tell him, it's good to show your feelings, it's okay to be sad, we all feel that way sometimes! Charlie woke on his own about 6.30am this morning, ate apples while I turned on the rice cooker to make his lunch, was sitting smiling in the brown chair after I got back from my habitual morning run and hopped smiling on the school bus.

Comments

Bonnie

would love to have heard you speak! Great post!

Kristina Chew

If there's a next time, I'll have to bring this list!

Dixie Redmond

Yes to all. Especially not belly-dancing and No. 2 right now.

Kristina Chew

Just trying not to repeat those mistakes....

Feebeeglee

Well said!

Jasmine

Love this! You help me find the strength to press on during challenging times. Here's to keeping the faith!

Barbara @therextras

Amen! X10

You are mentally brilliant (my diagnosis). Many times over my career I have thought I had the diagnoses of the people around me. Now I think I just relate to their humanity. I completely relate to all 10 & perhaps could tell a story on each one. But in sum I most want to say, here, where I feel safe, that advocacy is NOT about fighting

Cfer

To #2 and #3, all I can say is yes, yes, yes. Moving from something that's dangerous, to something that's not working to something that kind of works to something that has the best intentions but isn't working, to "we need something different". How many IEP meetings and how many reports and how many tears?

After writing yet another big check to the lawyer, it's off to another IEP meeting next week. And I thought I was socking away money in a 401K for retirement. It's to pay all these bills related to getting a FAPE!

Maybe #10's the best match - Hard Knocks R Us. Sounds like a motto for my next tattoo.

Kristina Chew

@Barbara, that is point #11, it's not about fighting, war, battle. I encounter those words over and over again in discussions about advocacy and think they are not the best way to proceed. A lesson learned in hindsight.

@jasmine, Charlie leads the way!

@Cfer, tons of tears, sweat, and too many emails fired off ..... I never wished I had considered law school until our first IEP meetings. Just to have the legal background and training!

Don't think I'll ever get a tattoo but #10 would be a strong candidate.

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