Remarkable Parents and Advocates who Never Give Up
November 27th, 2010 | 
Author: Parents and advocates of people with disabilities have a love-hate relationship with professionals because they don’t give up.
photo credit: freeparking
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
Posted in Advocacy, Autism, Caregivers, community, Disability, Disability World, Inclusion, Parents, Parents of Adults with Disabilities, Recommended Books + Videos, Transformational Experiences | Tags: advocates, Anne McDonald, ASD, autism, change agents, Donald Triplett, Jon Morrow, Joseph Marcellinos, Leo Kanner, Mary Triplett, Nina Marcellinos, Oliver Triplett, parents, Rosa's Law, Rosemary Crossley
The Donald Triplett story is quite useful for those of us who seek a greater understanding of people with intellectual disabilities. It is a humbling and amazing introduction into “Donald’s world,” a humanistic tome.
I recently attended AZDance, “A Joyous Holiday” production at MIM Theater. The 12 dancers with Down’s
Syndrome were varied in their talent, members of the “corps de ballet,” and quite a compliment to the other principle ballet dancers. If you are interested I can mail the playbill. Storytelling and advocacy go hand in hand to
educate the people about our commonalities in the global village. Courage, Mary!
HI Marti,
The Triplett’s have touched history. Glad you liked their story.
If you want, you can give us the URL for “A joyous holiday” sounds like it went well.
Mary E. Ulrich recently posted..Remarkable Parents and Advocates who Never Give Up
i like the aim of this blog
)
keep it up
Thanks Farouk. Your feedback helps me know if I am hitting the target or just sending my articles aimlessly into the blogosphere.
Mary E. Ulrich recently posted..Remarkable Parents and Advocates who Never Give Up
I liked your poem very much, Mary. I have been like this with the school district. Knowing that while I’m fighting for my son, I’m irritating, making other people uncomfortable. Sometimes I wondered if I appeared shrewish or biased or unreasonable. That so isn’t my normal M.O., it made me uncomfortable. That’s what the situation does to us. No-one feels good. What a system.
Alison Golden recently posted..William and Kate’s Royal Marriage Mystery
And here I thought you were mild mannered, quiet, shy and never raised your eyebrows or voice!!!!!!!
Way to go Warrior Woman! Glad to know ya.
Mary E. Ulrich recently posted..Remarkable Parents and Advocates who Never Give Up
Our daughter, Getty, has Spinal Muscular Atrophy (Type 1), which is the #1 genetic killer of young children. It is a terminal genetic neuromuscular disease causing profound muscle weakness and related complications. There is no treatment or cure (yet).
Like so many other SMA parents and parents of others with disabilities, we need to advocate and fight every day to get the care that is needed and deserved.
Thank you for your permission to post the excerpt on Getty’s blog as I think many SMA and other parents can relate to this.
For more information about Getty and SMA please visit her blog at http://www.gettyowl.com
Thank you!
Hi Mark, our thoughts and prayers go out to your family. Getty is lucky to have a family that is fighting for her. Some people find it difficult to understand the fierce devotion and love a parent feels for their child. Some people can’t see it any other way.
Everything in this article has happened to me. I hope by writing it down, it will help others. Best wishes. We are all part of this very vulnerable and very human family. Much love. Mary