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Remarkable Parents and Advocates Who Never Give Up

Remarkable Parents and Advocates Who Never Give Up
By Mary E. Ulrich

“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 an excerpt from Mary’s blog at Climbing Every Mountain (a base camp for parents and caregivers of people with disabilities).

Thank you, Mary, for your post and for permission to share this excerpt!


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  • Eileen says:

    They are my kind of people! Beautiful!

  • Getty is beautiful. She is also lucky to have parents who are working so hard on her behalf. There really is no other choice. Sending my thoughts and prayers. Mary

  • Getty Owl says:

    Thank you, Mary. I love what you have written. Another SMA dad said that it’s a “perfect post.”

    My wife and I are parents who, through necessity, have to be advocates, have to quote the law, have to know what the research says, have to be experts, and have to insist that others are accountable.

    We are not unlike so many other SMA parents or parents of children with other disabilities or conditions. We battle every day to not only to try to hold our normal lives together but we also battle a disease and, on top of it all, we battle the health care system just to get basic things.

    So many SMA kids will never know all their parents do for them. So many will never get the chance to say, “Thank you.” It is nice to know there are people out there who may think we’re a pain, but recognize and appreciate the struggle. You have done so with such elegance. Thank you.

    Getty is our kid. In a sense, SMA kids are also “our” kids. Kids in need are our kids. We will not give up.

  • Mark, I LOVE this post and I LOVE your comment here. I have often been in a room where I know the others in it are thinking all of these things in this post, but they have put up with me and have now become incredible advocates for Gwendolyn, too. Thank you for sharing this.

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