Attack by “Friendly Fire”: People with Autism and their families

by Mary E. Ulrich | Jun 8, 2018

photo credit: U.S. Army Garrison – Miami

So‐called “friendly fire”, sometimes termed fratricide or amicicide, is officially defined by the U.S. Army as “the employment of friendly weapons … which results in unforeseen and unintentional death or injury to friendly personnel.” (Wikipedia)

Yesterday I was sitting at my computer when the security system began flashing red alerts saying it found 2 then 6 then 15 viruses which ranged from strong to critical. I was just sitting there watching helplessly. Immediately I turned the machine off and called for help. Thankfully 24 hours later, I’m typing from another computer and a good friend is taking precautions so this never happens again. Turns out the virus attack was so nasty it even dismantled my computer’s security system. Some unknown enemy snuck up and damaged something that was important to me. No one was hurt, my friend thinks he can fix it. So, C’est la vie!

I can handle those kinds of anonymous attacks. What happened next was more upsetting.

When my computer life resumed, I checked my email messages. For the second time in one day, I felt I had been caught in an ambush. But this time the attack was coming from people I know and care about. People who are supposed to be helping us–friendly fire.

(edited to protect confidentiality)

From: Aaron’s Support Coordinator
Sent: Wednesday, October 06, 2010 1:53 PM
To: Mary Ulrich
Subject: Aaron’s house

Hello Mary,

This is the e-mail that you have been dreading. For years, Support Coordinators have put out e-mails about potential roommate matches, visits, etc.

Previously I have been able to say that Aaron and (his roommate) are not out of their (funding) ranges and guardians/parents are not interested in roommates, and they stop contacting me.

Apparently, per direction by (the director), we are in a financial place that we can no longer have the luxury of choosing not to move forward with roommate visits. I was told that I am to contact you and (Aaron’s roommate’s) guardian to set up a roommate visit for (his house). We have someone receiving a waiver and he needs a home in which to live. (Aaron’s house) is definitely considered a 3 or 4 bedroom home, so we have to consider (it) as an option.

Please contact me or (the director) with any questions or concerns that you may have.
Thanks, Mary.

Signed (Support Coordinator)

An Unsteady Peace

When my computer gets fixed, I’ll see if I can find the letters and presentation Tom and I made to the county board about this issue two years ago. Tom and I thought this was settled. Aaron has lived in his own place for over ten years. I worked for a year to make sure Aaron and his roommate had the funding levels in their Medicaid Waivers to sustain the staff they needed. I worked for another year to figure out the HUD Rent Subsidy Program. (On both, I’m proud to say Aaron was one of the first in Ohio.) The fact my computer is inaccessible and I can’t even retrieve my previous correspondence makes me feel even more vulnerable. Last time we explained in great detail how adding additional roommates “which results in unforeseen and unintentional death or injury to friendly personnel” –okay, death is too harsh, but the “unintentional injury” and a diminished quality of life would surely apply. The one staff person who has been with us for 7 years says she will quit the minute another “client” is added to the house. The complications go on and on.

Aaron’s residential situation is being held together with scotch tape and spit as it is. To add one or two more people to his living situation is a disaster in the making (everyone agrees with this).

Amicicide

At least, our advocacy efforts last time delayed it a year or so. But now it is back—in our face. It hurts deeply that we cannot trust the people in positions of power. Their best interests are not the same as ours. We have worked with the county board for probably 25 years. I was on the board for 6 years and have friends there. Our support coordinator is a dear friend who has seen us through many disasters in the past 15 years we have worked with her. The Director is also a dear friend. So these are good people who I love. I appreciate their budget issues.

But, if I don’t speak up for Aaron’s interests who will? Plus, Aaron’s roommate’s parents are 87 years old and his mother has intense medical issues. Plus, this must have happened pretty quickly because we saw our Support Coordinator at a meeting on Monday and she didn’t say anything. I’m not sure what happened in those two days since. Plus, plus, plus….

Battle Plans

I haven’t decided the exact plan of action. This is such a surprise attack I’ll have to get over my shock, disappointment and anger before I can take a step forward. But it’s time to put the battle fatiques back on and geer up for battle. Again.

Last time when we were attacked, we resolved it. This time the enemy (our friends) know our game plan and strategy.

Further, when Tom and I are in the nursing home and unable to stop them, we know the assault will again happen. So do we just accept the inevitable? Is this a battle we cannot win?

In Disability Scoop there was an article titled: Autism Moms Have Stress Similar to Combat Soldiers (click here). “Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers…” The author’s research points out that when physical hormone levels and chronic stress levels were measured, they were similar to those of combat soldiers.

No surprise there. And I would give this email as proof of the reasons. Surprise Attacks, Friendly Fire… It’s like this violated our peace treaty. A bomb that dropped from the sky during the night. And, from those we trusted and depend upon to look out for Aaron’s best interests. From those in the “helping profession.”

Thoughts?

Do you have an extra bedroom in your house? There are lots of homeless people around. Since people don’t want to pay more taxes, what if we just choose someone to live in your house?

More to come:
Keep Climbing: Onward and Upward.

All my best,

Mary

Day 16 of our Chris Brogan’s Every-Day-For-30-Days Blogging Challenge Follow us on Twitter #CB30BC
Alison Golden of The Secret Life of a Warrior Woman is my partner in this challenge: (click here to check out her new post.)

Sandwich generation? It’s a pickle.

by Mary E. Ulrich | May 20, 2018

photo credit: williamhartz

People who have to take care of their elderly parents and their children are sometimes called the “Sandwich Generation.” My experiences the last couple days, reminds me not only of a sandwich, but an old baseball game called Pickle.

In the game of Pickle, two fielders throw the ball back and forth trying to squeeze the runner until one of them can tag him/her out. The runner is said to be “in a pickle” because there are few choices.

In the post, “Attack by friendly fire: People with autism and their families” (click here) I shared how my son, who is 35 and has the label of autism, is caught in a residential crisis. The county board is the fielder on Base 1.

This same week, I’ve been running my mother who is 88 years old back and forth to the doctors for her acute pain. Today the doctors decided to give her full hip replacement surgery. My mother is the fielder on Base 2.

Me–I’m the runner caught in the middle, “In the Pickle.” I keep hoping to get a break and make it safely to the base. Back and forth, forth and back… go from one crisis to the next. Try not to be tagged “out.” It’s tricky, but maybe I can slide into a base, or pull a turn and twist maneuver, or run real fast. The odds aren’t good. But, sometimes we get lucky and can get to base safely.

Aaron’s problem is actually the more difficult to solve because the “system” is set up to deal with people like my mom. There are thousands of seniors having replacement surgery every day. The system, for the most part, works well. If it doesn’t work, there are thousands of family members across the nation who can advocate and fix things. Still not easy, but there are lots of voices and advocates.

With Aaron there are few voices to advocate. Few people have the luxury of even being in our situation.

Many parents of adults with disabilities have their child living at home. They might be on the waiting list for the few Medicaid Waivers. If their child does get residential services they do not know what best practice looks like, they are not likely to rock the boat or ask questions. Many parents are afraid the services will be taken away. Many think the agencies are doing the best they can and just give up.

Thanks to so many of you who have offered your prayers and concern. Thanks also to those who have given me some ideas and encouragement as we move forward.

Right now, I’m still “in the pickle” running between the bases.

Comments:

Are you also a member of the sandwich generation? Also caught in a pickle? Tell us your story. How are you dealing with it?

Keep Climbing: Onward and Upward.

All the best, Mary

Day 19 of our Chris Brogan’s Every-Day-For-30-Days Blogging Challenge Follow us on Twitter #CB30BC
Alison Golden of The Secret Life of a Warrior Woman is my partner in this challenge: (click here to check out her new post.)

What makes you special?

by Mary E. Ulrich | May 5, 2018

photo credit: jpellgen

My granddaughter, Isabella, brought home a paper where all her classmates wrote a sentence about what they liked about her. It reminded me of this story. God Bless her third grade teacher, Mrs. Link.

This anonymous story is titled simply, “Teacher”.

I’ve read this many times and always think it is powerful. We don’t tell others often enough what makes them special, why they are important to us, why we love them. Likewise, we don’t hear from others why we are special.

Hope you can use this in your work and life. I think any group leader could adapt it for children or adults.

Comments:

The fact that you read my blog makes me love you. And since you are a chosen few, it proves you are unique:)

What makes you special? How have others told you or showed you they loved and cherished your unique gifts?

Would this be different for people with disabilities? How do people who don’t talk with words tell you they love you?

Could you use this activity? Like this story?

Please share you thoughts.

Keep Climbing: Onward and Upward.

All my best wishes,

Mary

One day a teacher asked her students to list the names of the other students in the room on two sheets of paper, leaving a space between each name. Then she told them to think of the nicest thing they could say about each of their classmates and write it down. It took the remainder of the class period to finish their assignment, and as the students left the room, each one handed in the papers.

That Saturday, the teacher wrote down the name of each student on a separate sheet of paper, and listed what everyone else had said about that individual.

On Monday she gave each student his or her list. Before long, the entire class was smiling. “Really?” she heard whispered. “I never knew that I meant anything to anyone?” and “I didn’t know others liked me so much,” were most of the comments.

No one ever mentioned those papers in class again. The teacher never knew if the students discussed them after class or with their parents but it didn’t matter. The exercise had accomplished its purpose. The students were happy with themselves and one another.

That class of students moved on. Several years later, one of the students was killed in the Middle East and this teacher attended the funeral of her former student. She had never seen a soldier in a military coffin before. Her student looked so beautiful, so mature.

The church was packed with the student’s friends. One by one those who loved the soldier took a last walk by the coffin. The teacher was the last one to bless the coffin. As she stood there, one of the soldiers who acted as pallbearer came up to her.

“Were you Tyler’s math teacher? He asked. She nodded, “Yes.”
Then he said, “Tyler talked about you a lot.”

After the funeral, most of Tyler’s former classmates went together to a luncheon. Tyler’s mother and father were there waiting to speak with the teacher. “We want to show you something,” the father said, taking a wallet out of his pocket. “They found this on Tyler when she was killed. We thought you might recognize it.”

Opening the billfold, the father carefully removed two worn pieces of notebook paper that had obviously been taped, folded and refolded many times. The teacher knew without looking that the papers were the ones on which she had listed all the good things each of Tyler’s classmates had said about her.

“Thank you so much for doing that,” Tyler’s mother said. “As you can see, Tyler treasured it.”

All of Tyler’s former class mates started to gather around. Charlene smiled rather sheepishly and said, “My list is in the top drawer of my desk, when I have a hard day I look at it.”

Mark’s wife said, “Mark asked me to put his in our wedding album.”

Then Vicki, another classmate, reached into her purse, took out her wallet and showed her worn and frazzled list to the group. “I carry this with me at all times,” Vicki said and without batting an eyelash, she continued, “I think we all saved our lists.”

That’s when the teacher finally sat down and cried. She cried for Tyler and for all her friends who would never see her again. She cried for all students she had ever had in class. The ones she knew did well, the ones who struggled, the ones who she could never figure out. She also thanked God for the inspiration to do an activity that was so simple yet obviously touched her student’s lives.

The density of people in society is so thick that we forget that life will end one day. And we don’t know when that one day will be. As teachers we work hard, we give our best, and every once in a while we are inspired.

So please think about your future as a teacher. Dream big. You will be in an awesome position to impact your students for a lifetime. Remember, you reap what you sow, what you put into the lives of others comes back into your own.

(Author unknown)

The “R” Word: A Challenge to Bloggers.

by Mary E. Ulrich | Mar 5, 2018

The “R” Word: A Challenge to Bloggers.

Stop the “R” Word

March 2018 is designated “Stop the ‘R’ Word day. If you go to their website they have many ideas for activities and actions. If we each do one thing, we can make a difference for the future of our children. Please share your thoughts and actions in the comments.

David Hinsburger and the “R” word.

David Hinsburger is an award-winning author and advocate for people with disabilities. His article titled: The People who “ARE” the “R” Word is a must read classic for anyone who doesn’t understand what the fuss is all about.

Sticks and Stones and names hurt

My Letter to a Major Blogger

As promised in my post “Definitions of “Retarded”, this is the letter I wrote to a major blogger when he used the words “retarded” and “idiot” in one of his posts. It is edited for this post.

Hi _____,

I have followed your blog ____ for a long time and enjoy your stories, ideas and writing style. However, I have issues with your use of the words: “retarded, idiot, moron and imbecile.”

You have made strong statements about using whatever words you want–even if they offend people and hit their hot buttons.

You can use words like “idiot, moron, imbecile, crip, tard…,” but why?

I agree this is America and defend your right to freedom of speech. I agree people who find these words offensive can just unsubscribe. But… you are a smart and thoughtful person. Why would you want to purposely offend vulnerable people?

I would rather believe you don’t understand how much these words hurt.

Mental Retardation–two words that matter.

My son has the label of “mental retardation” now called an “intellectual disability.” Because of those two words, he was not allowed to go to public school.

Because of those two words we had to spend three years in court, costing thousands of dollars. We, along with other parents, had to prove our children were human and had the right to “life, liberty and the pursuit of happiness.” We had to prove in court that our son would benefit from being around other people and his mere presence on the school grounds would not harm other children. Because of those two words he was not allowed to participate in swimming lessons with the other kids in our neighborhood PUBLIC park. Because of those two words our family has been refused to be served in a restaurant and a Doctor refused to have our son for a patient…need I go on?

But our problems were minor compared to people with the label of intellectual disability in the past.Parallels in Time: A History of People with Disabilities

Just a generation ago, because of those two words, people were treated as animals instead of humans. They were sterilized, given doses of radioactive materials in their oatmeal. They were taken from their families (“for their own good”) and warehoused in inhuman institutions. Some were not given clothes and had to sleep on straw. They were denied even the most basic human rights–all because one psychologist in one situation gave them one test and labeled them those two words.

Most history books have made people with disabilities invisible. So, you probably aren’t aware, but the words: “moron, idiot and imbecile” came straight from the medical manuals of less than 40 years ago.

There are still churches which will not allow people with the label of those two words to marry, some churches do not even allow “those” children to attend their services or receive the sacraments. Many private schools and churches legally still segregate and discriminate against our children with those two words.

There are many normal couples who joyfully want a baby–until they hear those two words, and then immediately abort. There are Baby Doe cases where if the baby has Down syndrome and is assumed to have mental retardation, the family refuses to take the baby home from the hospital and refuses to allow the baby to have food. There are cases of “wrongful birth” where the parents sue the Doctors for allowing their child with “mental retardation” for being born.

In 2012 we can add the case of baby Amelia Riveria who was refused a transplant because she had an intellectual disability. The hospital has recently apologized.

“Mental Retardation, retard, retarded” are not funny words”

In Ohio, the state legislature passed a bill in 2009 to remove the words “Mental Retardation” from state agencies and its documents. This was the work of numerous advocates and thousands of hours of public hearings.

This is a civil rights movement where we are fighting for the right of our children to live, work and recreate in the community. The right to be seen as human beings and citizens of this great country.

Sticks and Stones … and words can hurt.

When a label carries enough stigma that the label alone can cause discrimination–the label is a problem.

The civil rights movement of the 60’s laid the ground work for Sec. 504 of the Rehabilitation Act and the Individuals with Disabilities Education Act…. and our civil rights legislation, The American with Disabilities Act (1990). If you look at the closing statements in Brown vs. Board of Education (1954) you will see the school district’s argument, (paraphrased) “If you let negro children in the public schools, the next thing you know the school will have to educate retarded children and Indians.”

In 2012, our children have the right to go to public schools, and restaurants cannot refuse to serve us, or ask us to leave because they don’t like “the way we look”.

This is NOT ancient history. This is NOT some group of radical parents and advocates who just want people to be politically correct.

Churches, non-public schools and organizations can still discriminate and decide who they allow in their churches but because so many of our children are going to school and living with their families in the communities, there is not the fear that once existed. And the medical professionals have dramatically changed their low expectations and acknowledge the limits of the IQ test and other measures they used to label people.

Sure this came about because of civil rights court cases and federal legislation, but mostly it happened as decent people decided to give people who were different a chance. I know it is unpopular to say that the Federal Government and Laws are important. Many people say there is too much government. I wish there was more protections and enforcement for vulnerable people.

Challenge to Bloggers

My challenge to all bloggers is:

Will you take cheap shots and continue hateful language which hurts people? Or, will you use respectful language and recognize people with intellectual disabilities are people and at least give us all a chance to build a better world.

Words have power. You have power.

Will you use your power to continue to hurt people, or for change?
I know you didn’t mean to hurt anyone, but for those of us (like me) who have children with IQs below 50, children who were labeled “idiots” by our Doctors and medical professionals and who are struggling every day to try and make a better life for our children, the words: “retarded, idiot, moron, imbecile” are downright offensive. So forgive me that I rant today instead of ignoring it.

I know the words are used everywhere and people aren’t particularly trying to hurt people with intellectual disabilities but I would appreciate your consideration.

Thanks. Mary

The blogger I sent this letter to agreed to not use the offensive language only asking that he remain anonymous. I consider that a victory for all of us, and it has made me a loyal fan.

Rosa’s Law

Rosa’s Law was passed and signed by President Obama in 2009 to use People First language in all Federal documents. Love, NOT Labels| Rosa’s Law

I am hoping other bloggers will take up the challenge and use People First language and the words “intellectual disability” in a respectful way.

This is a fresh start. We can do it right this time.