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
Hello ,
Well my daughter Patty has been living in her new home since jan 6 2014…wow how time flies.
She loves her home ate Rachel.Patty volunteers for Meals on Wheels once a week..I act like a job coach.But do very little ..suggest she say focused.
She has been helping set the table, serve meals to seniors that drop into Center for lunch.She does clean up, ven run dishwasher.
She goes to Zunba Gold and tai Chi…seating.We going to water Aerobics.
She and Rachel have friends over for dinner, play cards the Wii bowling is a favorite, go to movies shopping…
A life in the community.
Had to get staffing issues corrected but we did that too.
Just updating
Jan
Janis, this is fantastic news. It sounds like your daughter has a “quality of life” as Ann Turnbull talks about. She has meaningful work, she has friends, she does things she likes to do… This is encouragement for ALL of us. Keep up the great work and do give more updates. Thanks.
i really enjoyed reading this poem. I think that it is incredible that you became the voice for so many people and made such a different in so many lives. You are a very strong inspiration to so many people to advocate for their own children or even themselves.
Glad you liked it Beth. But, my goal is not just “be an inspiration” rather it is to show others that they can accomplish a lot by making small steps toward a vision of inclusion. And those small steps start with the people around you. Glad you’re helping advocate for children and walking with us.
This poem stood out to me because it’s nice to step back and look at things from a parents perspective. Sometimes I realize my parents might be annoying or irritating to other people, but they’re doing everything in their power to satisfy their children and make living in this sometimes cruel world easier. As a parent, I’m sure there are countless stories and situations where you’ve stood up for your children. Probably on a daily basis. And as someones child I’d like to congratulate you, my parents, and parents all over the world. Being a mother or father, to me, is the hardest job in the world. You never retire from being a parent, there are no breaks, there’s no hand book. You simply do the best you can do and learn along the way. And I completely agree, we admire them because they never give up. And no matter what obstacles come their way, they will fight with everything they have. I strive to be like my parents and like the ones you talk about. I will never give up on not only my own children (that I will hopefully have one day) but children everywhere. Everyone deserves a chance, everyone deserves to be heard, and every story is different. And that’s why I believe we must always give people chances.
Parents have been the most important advocates for their children. And you’re right Nicole, it is a 24/7 commitment for a lifetime. 🙂
Hello,
Enjoyed reading here.
I have adult daughter with autism.Patty is moving from a group home of 6 women to a condo with a young lady who is legally blind CP…was a1.8 lb baby.Rachel is friendly chatty high functioning too.
5 minutes from my home..
They have had multiple meals,shopping,using the wii and iPad .
This was a gift from God.
The mothers are compatible too.
They want to be out shopping, Zumba,swim,and work or volunteer.
I think I will learn a lot here.
Thank You for this site..don’t feel isiolated …
Welcome Janis,
It sounds like you have made great progress. I wish you every good wish with your new adventure. Keep us informed of how things are going. Inch by inch, anything’s a cinch–right?
Hi Janis,
I’m glad you stopped by. Best wishes for your daughter, it sounds like a nice opportunity and I’m sure you worked very hard to make it happen. Look around the other articles, I think you’ll find others you like. Thanks for being here. Mary
I really loved reading this. It shows just how passionate and determined the parents of children with disabilities are to get equal rights for not only their children, but all children with disabilities. It makes me realize that there are many people out there, even those without children who have disabilities, that should be helping fight and advocate right alongside these parents to gain rights for children with disabilities.
You’re right Megan, we need everyone to advocate and help us fight for our rights. I’m glad you’re on our side to help us.
It is great to know that people are so passionate about an issue. Sometimes it seems as some of the top officials tend to not be as sensitive to issues that others deem as extremely important. I feel that those who are fighting are a constant reminder to the people in charge that it is a serious issue that needs to be changed. They are definitely putting themselves out for others to see and making an impact in the world and how we know it. In order to make such an impact, it has to be known that people are fighting. The post made it obvious that advocates are doing the right thing to bring about more rights to those individuals with exceptionalities.
You are right Sadie, it is one continuous journey. Sometime you rest, but then it is back to action. As long as we care enough, we can do something, however small. And that little bit of small adds up over time.
I loved reading your poem and I thought that this article was wonderful. I very much respect and admire parents who advocate and fight for their children. It can’t be easy to constantly have to fight for the rights and proper treatment of your child. I also enjoy being able to read about the advances that are being made for people with disabilities. I feel much more aware and since I have not had many experiences of my own it is nice to read and learn from others.
Thanks. Some people don’t get the humor and/or sarcasm. You must be on the “in” crowd Rachel.
I really enjoyed reading this poem. I have a cousin Brooklyn, who has Heterotaxy. Heterotaxy syndrome is a disorder that results in certain organs forming on the opposite side of the body. Heterotaxy has been known to affect the development of the heart, liver, lungs, intestines, and spleen, all of which is affected with Brooklyn. My Aunt Maggi, Brooklyn’s mother has fought very hard for Brooklyn, to make sure she has received the best care, and that she will live the most normal life as possible for a child like her with such a severe disease. Brooklyn has already undergone many surgeries repairing her heart, and has beat many of the odds that have been up against her. I admire parents who stand up for their children and fight for a difference in their lives. Reading this poem it reminded me of my Aunt because I know when Brooklyn is of age to start going to school, she will stand beside her and fight to make sure that she has the best schooling possible.
Wow, sounds like you have an amazing family Ashton. It must be very difficult to have such a rare condition as Heterotaxy. I hope your aunt has a support group or is able to get the information and encouragement she needs. Let me know if I can help.
Inspiration resonates from the short passage and stories that relate to the main message. Not only were some of the individuals and families living against society’s expectations, but were pushing for unthinkable change. The type of commitment one must have to vocally change a part of society must be incredibly strong. The passage is right; ‘They can’t (never) give up.’ Despite the frustrations they encounter and cause for others, their dedication is not impeded, but strengthened. I found these stories and their passions truly inspirational to how I can go about change. At a personal level, my family remains as the most remarkable people I know. I admire and respect each and everyone one of them in their own way as I believe each person has unique potential to contribute to life. I could definitely see the parents that have children/relatives with disabilities push for them to have better lives as I have that type of relationship with my parents as well. I know this is not the case with everyone, but I could most relate to the parents that push for the rights of their kids. I personally have not pushed for something as extreme as gaining rights for people with disabilities or changing the name of how we reference to those with disabilities. I have, on the other hand, encouraged children that I have worked with to speak up, volunteer, and share. For example, I encourage kids to speak in front of the church about ‘God’s word of the day.’ I encourage them to share how they feel about certain things and let them know ‘they can do it’ or ‘they can change it!’ Although these are not history making changes, I know I am helping to improve a child’s skills that will hopefully later influence their life.
Hi Meredith,
It sounds like you are touching people in your own way.
If you think about Maslow’s hierarchy, we all need the safety and the basic food, water, shelter… AND when we belong, then we can expand our circle to include others. With your strong family background, it sounds like you are now moving toward that self-actualization–which might mean helping others find THEIR self-actualization.
It can be an amazing circle of support if you are looking. Thanks for your comment.
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
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.
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.
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.
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.