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Archive for August, 2013

Remarkable Parents and Advocates who Never Give Up

Parents and advocates of people with disabilities have a love-hate relationship with professionals because they don’t give up.

dad, mom and me - 1969
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photo credit: freeparkingFamily portrait with mother, father, two small boys and baby
Creative Commons License photo credit: Powerhouse Museum Collection

I’m Thankful for Parents and Advocates

You know the ones.

They never give up.

They ask the tough questions.
They demand answers.

They show up at budget meetings and want copies of the agenda and handouts.

They show up at board meetings and introduce their child.

They study the friggin’ law and quote it at you.

They call the State Department when they can’t get what they want at the local level.

They are politically savy–not politically correct.

No matter how many times we tell them, “You are not credible because you are too emotionally invested,” They won’t give up.

They don’t care the budget has been cut.
They don’t care we are sharing offices and there is no toner for the copy machine.

They aren’t reasonable about “waiting”… or accepting excuses for shoddy performance…or people who don’t call them back.

They embarrass us by going to meetings where they are the only unpaid person in the room, and they are more prepared then we are. And they go to more meetings… and more meetings.

They just won’t give up.

If we try to slip one by, it’s like they have built-in radar. They just seem to know when we filled a staffing gap with an inexperienced person, or if the caregiver had a beer.

If we tell them the “research says”–they want to see the research.

They give us copies of new research.

They call the researchers–collect.

They even have the nerve to point out flaws in the research studies and want their child in the next study.

If we tell them they can’t possibly understand the research, they read books, network, take courses until they become the experts. Some even get their Doctorate degrees.

They insist we don’t give up.

When we do something right, they tell us we are wonderful and they are thankful, BUT….

Damn, there is always a BUT.

When we tell them to “Trust Us,” they smile and tell us that is like asking GreenPeace to “trust” the oil companies.

They just won’t give up.

Damn, they drive us nuts….
But we know that after we retire and get our pensions, they will still have to be harrassing our replacement because their child will always need someone to advocate for them.

We respect them because we know they force us to do a better job.

We know that when they are helping their child, they are also helping all children.

We love them because their motives are pure and they make the world a better place.

And most of all, we admire them because they don’t give up.

This is dedicated to:

Mary and Oliver Triplett

They were the parents who ignored advice from the professionals and kept their son Donald home from the institution. Their son became the famous Donald T. in Leo Kanner’s research article identifying the phenomenon he named autism. This article in The Atlantic shows how Donald is living today. Though the story is about Donald–I think it is his parents’ love and advocacy that is the REAL STORY (click here).

Anne McDonald and Rosemary Crossley

Anne McDonald and Rosemary Crossley kept teaching us all about the right to communicate, and they didn’t give up.(click here).

Jon Morrow

Jon Morrow is an associate editor on CopyBlogger whose blog article: On Dying, Mothers, and Fighting for Your Ideas went viral. He is a success story and has done amazing things, but when you are reading this, think of his mom.
(click here).

Nina and Joseph Marcellinos

Nina and Joseph Marcellinos knew the word “retarded” hurt their daughter’s future–and they didn’t give up until they changed the Federal Law. (click here).

Tell us about your experiences:

Do you know any remarkable parents and/or advocates? Do you love, hate, respect, admire, despise them?

When you are reading about great advances for people with disabilities, the elderly, children… do you look underneath the headlines and see the parents and advocates? Have you done something where, against the odds, you didn’t give up?

Keep Climbing: Onward and Upward

All the Best,
Mary

More than just a Graduation Speech

Graduation: More than just Words.

Did anyone like Jeremy go to your school?

What message would you tell Jeremy if you had the chance?

Jeremy Sicile-Kira’s Graduation Speech

Jeremy graduated from Torrey Pines High School with a 3.70 GPA on June 18, 2010. Jeremy has the label of autism with little verbal speech and gave this commencement address using voice output technology. His father, Jim Sicile, shot and edited this short movie.

Comments: Any other graduation stories you want to share? Don’t you wonder what is happening now? Is he in school? on a job? Does he live with his family or in the community? Does he have friends? I hope Jeremy is having a wonderful life with all the supports he needs. Is graduation really the beginning?

Keep Climbing: Onward and Upward

All my best,

Mary

Other posts you might enjoy:

Remarkable Parents and Advocates who didn’t give up.

What is Inclusion?