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 houseHello 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.)
Wow!! What a bummer even if its sucks. What he and the other people in the day program supposed to do? Who decides all this nonsense anyway? It makes me feel like the school yard bullies beating me up. These scum sucking losers I guess just morph into bureaucratic jackasses(pardon all the not so nice terms).
I guess are “Christian nation” is doing its best to make sure that only the elite on super snob hill weather the so called recession.
I hope that Aaron and the other human beings at his day program find meaningful activities and are somehow able to become more part of the larger world. And I hope that you find the inner peace and blessing that you need to keep the focus on the solutions.
Peace and true freedom.
Gary, you do make me smile.
I’m going to take a break, pretend this will all somehow work out, and go watch Castle.
Mary,
My thoughts are with you and Aaron; it always hurts most when we’re blindsided by those we trust. I truly hope you win this battle.
Thanks. As the days go on I’m trying to get more philosophical about this, but about 10 min. ago, I opened an email saying Aaron’s day program is closing. The program sucks so that is no loss, but what are the alternatives. It is amazing how one problem morphs into more. I’m thinking I should get out some old “We shall overcome” records. Geesh, that really does make me old. We
Terri The powers that be are quite arrogant. I would just for once love to watch these SOBs endure what they dish out.
I’m happy that your sister has been lucky in the chemistry of her drivers and aides. I don’t know if you are aware of it but there is apparently a whole lot more to things then meets the eyes. While the serenading sounds wonderful(I’m a musician so I fully appreciate that).It is more likely that the driver’s EM field is also harmonious with Lori’s own E, field. The human heart emits a strong EM field that has been detected at 8 feet away from the heart. Since I don’t know the distance between a driver and Lori I can’t say for sure but I wouldn’t be surprised that even if a driver or aide doesn’t do anything wrong or just talks it might not matter. As the heart is what radiates our emotional states to other humans and apparently to at least other mammals.
Oh I’m curious is it your parents or the powers that be that don’t like you taking your sister in?
Anyway I hope that you and Mary find the answers for those that can’t speak for themselves or who wouldn’t be listened to even when they do try to communicate their hopes and dreams.
Peace and true freedom
Mary,
I feel for you friend. This is unfortunately an problem that will be raising its head more frequently in the future. The current political forecast remains increased volatility and more division as more and more people compete for fewer and fewer resources. As a nation we always prided ourselves on looking out for the less fortunate and those unable to care for themselves but that largesse is dying, strangled by the loss of jobs, the loss of hope, and a strong sense of self-preservation. It is one thing for me to share my property and resources with another but it is not acceptable for that person to demand my property and resources as an entitlement when they failed to act on their own behalf and provide for themselves.
Perhaps it is time for reevaluating the lessons of Jamestown and the human experience.
You and your family will be in my prayers.
Bella
Thanks Bella. You are right there are a lot of people suffering. There are scarce resources. The good thing about Aaron’s situation is that it is much cheaper than the old days when he would have been put in a large institution. That has worked successfully for us for the last 10 years. Plus, our family takes Aaron home every weekend to try and give the staff a break. We also handle all the Doctor visits and other meetings, plus… lots of stuff. So we are pitching in and doing our part. Thanks for all your kind thoughts and prayers. We need them.
ps. my mom has her hip replacement surgery tomorrow PM. Maybe we’ll see you in the Dr’s office.
Hi Mary,
They have been looking into group homes. But I’m also Lori’s guardian. I have plans of taking her in, but they aren’t happy about that:)
Where do you live Terri? There are lots of options to group homes. Does your sister have a medicaid waiver? That is the first step and often there is a waiting list. Your sister’s case worker would have that information. Get her on the waiting list ASAP.
This is a really good read for me, Must admit that you are one of the best bloggers I ever saw.Thanks for posting this informative article.
Thanks Elmer, I always give credit to Aaron. He is my focal point and keeps me on task.
Hi Mary,
My sister, Lori, is mentally retarded and faces many of the same challenges as your son. My parents are getting older and Lori still lives with them. She goes back and forth to the “Center” each weekday by bus.
We recently had a difficulty with a change in bus drivers. Lori’s been very fortunate with all her bus drivers and aides until this change. It was a long ordeal but finally she has a new transportation service and a bus driver who serenades her to “school” and home.
It always amazes me when the powers that be force change on those the least capable of change.
I hope the situation for your son gets better soon.
Terri
Great example Terri. Thanks for joining the conversation. Do your parents have any plans in place for your sister?
I fully understand Mary. I hope you can find a way to make things work for Aaron.
Hi Mary. Sounds very discouraging. I just don’t get it though on the funding. The Government can always find funding to get into and stay in various wars and paramilitary type actions overseas but it can’t find the funds to help our most challenged citizens.
This partly why I have been looking into less government and alternative currency to the state controlled debt based one. That might be an important step in changing the various funding issues that seem never to touch our Imperial power but almost too often touches the average citizen.
I agree that changing Aaron’s environment that drastically will be harmful to him and his roommate. Not mention what these potential housemates might have to endure themselves.
I sincerely hope your mother is also okay as I’m still dealing with my mother’s medical issues.
Have a great weekend in the great outdoors Mary.
Hi Gary,
It sounds like you are more into politics than I am.
At this point I just want to not make things worse. And that is tough enough.
I just finished reading Jodi Picoult’s book about an autistic boy. He was actually very high functioning–with Asberger’s. It was very difficult for him to face changes in his routine. My cousin has a child with Asberger’s, too. I know how difficult change is for these young men. For a mature man with a more severe form of autism, I don’t see how crowding him in and changing things so much could be good for him.
Also, if he is paying rent, has he (or his guardians) have no say at all about this? Will his rent be reduced by 2/3 if four people move in?
Thanks for your support Michele. Do you remember the name of Jodi’s book? I’ll definitely have to check it out.
You ask some excellent questions. I think it is very unfair to force extra people in the house. Certainly not in Aaron or his roommate’s best interest. Plus, I feel betrayed by the people I trusted. So nothing good.
Mary,
My nephew is autistic, and I understand the passionate fight that parents must undertake to ensure the life of their autistic child is as stable as possible. The autistic mind is extraordinary, but one area that is undeniably a challenge is how to interact with “new” people–it can set an autistic person back months or years until they gradually adapt. I hope you don’t give up–the advocacy you provide is the greatest gift your son will ever have, and you are to be commended!
Thanks Jenn. You’ll have to share more about your nephew. Does he live in Ohio? We are trying to figure out what to do. I’ll be picking Aaron up within the hour and have him all weekend. I’m trying to believe we can make this work out. But it is so discouraging.
I am sorry to hear about this and understand all too well. I have worked in residential services for adults with different abilities for over 20 years. The “roommate” vs. “funding” issues were the most difficult to manage as an administrator (logistically and emotionally). For someone who has always believed in the system fitting the person not the person needing to fit the system, this conflict is what ultimately what fueled our agency to get creative and design an alternative residential model. The result was a program similar to adult foster care, but intentionally designed to only be with people who already know each other well and whose commitment was at least 3 or more years. It has been a very successful model for both the families and the person(s) they support. I am not sure of the specific funding options in your state, but could be an option. After working to develop this model, my family decided to utilize it ourselves and invite a 19 year old young man (who had significant behavior challenges, autism and bi-polar disorder) to live with us in this model. We had known he and his family since he was younger. He was in need of a stable option and we did not predict a roommate was a good alternative for him at the time. He lived with us for 6 years and became a part of our family. He still is. I would be happy to talk with you further about the option. I have worked now with 3 states to replicate this model and in each case it has proven to be a good option for those seriously vested in it. I could go on and on about this topic, because although he is not my son, having “Joe” live with us has helped me empathize the fear that a parent has just wanting stability, happiness, independence and comfort in where their loved one is each day. I have now worked with so many families who have been in a similar position and hope that you find exactly what is best for you and Aaron.
Holly, I’d love to learn more about your model. I haven’t even had the energy to respond to our Support Coordinator. We’re pretty discouraged at this point. We just don’t know what else we can do. We take Aaron home every weekend, we do all the Dr visits, we furnished the house, we put out all the fires… and yet, we are the bad guys. Now, they are throwing this all on us again, and again and it will continue. Thanks for any help you can give. Mary
Thanks Alison I appreciate your note more than you’ll know. Just got back from taking my mom to the hospital. So, if bad things happen in three’s–at least my three are over.
Tomorrow I pick up Aaron for the weekend. It is supposed to be a record breaking day for beautiful weather. The trees are starting to change. Lots of good out there if you are looking. I just need to look harder.
How difficult, Mary. I’m not sure what to say. I do understand the stress level issues and the feeling that there is no-one else to take on the battle. Very lonely place requiring lots of effort as there is no-one around you to feed energy off of. I hope over the weekend you can come up with a battle strategy. There’s a lot to be learned from combat and sports psychology, IMO.