Aaron’s a Dude: The Dignity of Risk

Aaron just spent 3 days on a Dude Ranch in Michigan.

Before the Dude Ranch closes for the winter, buses of adults with all kinds of disability labels arrive and sleep in bunk houses, eat in mess halls, go boating, ride horses and sing songs around the campfire. For many of these adults—this is the highlight of the year.

The ranch’s owner is friends with the owner of the residential company which provides Aaron’s supports. (This is a great example of Bronfenbrenner’s system’s theory—circle of friends, using your contacts…click here).

Aaron is assigned a staff counselor one-on-one, but everyone pitches in to make sure everyone is safe and has a good time. Always being safe and having a good time sometimes contradict each other. Bob Perske used to talk about, “The Dignity of Risk” and as parents this is a complex and difficult balancing act.

This year we were lucky because one of Aaron’s regular staff went to camp. This was nice because she has worked with Aaron for 6 months and knows what Aaron likes and doesn’t like. So that helped mom’s anxiety and I would think made a big difference to Aaron.

This is about Aaron’s fifth dude experience and each time it’s a worry for me and Aaron’s dad. It is hard to get good feedback on what Aaron does and doesn’t do. I wish he could talk and tell us but I figure it is a change of pace, he likes to ride on the bus, sing songs. Especially, he likes to go horseback riding.

When Aaron was growing up, he took horseback lessons for about 10 years. He only stopped because he reached the 150 pound weight limit. When Aaron sits atop a horse, he looks like Prince Charles: head high, back straight, sometimes he even points his toes. I think he and the horses communicate in their own cosmic language. Sue Radabaugh, Bobbi Theis and the physical therapist at Cincinnati Riding for the Handicapped gave Aaron and each rider a lucky horseshoe at the end of each series of lessons.

We learned horseshoes should always be positioned so the luck stays inside the horseshoe and doesn’t fall out. Aaron still has the horseshoes. God knows we don’t want to have our luck fall out.

Each year, I try and give Aaron “the dignity of risk” and not worry about the million of things that can go wrong at camp. I don’t like to think of myself as one of those “over-protective” or “hovering” parents. Some years have gone better than others, but each year we hope and pray our luck holds.

It is just difficult having a person like Aaron who is so vulnerable, when we don’t really know how the staff will act in this very different environment. For instance, Aaron has red hair, freckles, and burns in about 15 minutes in the sun. His caregiver is from Jamaica and has never had a sunburn in her life. I send sunscreen, I give instructions, but each year we ask, “Will Aaron come home with a sunburn?” In the post about deciding to go to the family reunion (click here) I could actually do the ecological assessment and control the environment. But the Dude Ranch is too far away. I had to put the control in the staff’s hands. And we’ve had some rocky experiences with some staff.

We did find out that Aaron went right up to the horses and wanted to ride, he went out on the lake in a boat four times, and he passed out the light bracelets for the barn dance the last night. The little radio we sent for the bus ride worked well, and actually came back with Aaron. Only one toileting accident. So all is well for another year. Hopefully we will see some pictures. And hopefully we will be even better prepared for next year.

Maybe I should hammer some horseshoes (with the luck inside) up on our front door. Whew! made it another year.

Advocacy in Motion:

Last weekend was the turning point. Hey, I’m an experienced advocate, I’m even a graduate of Question the Rules. Sometimes, enough is enough, you just can’t take it any more and must take action.

Herby, Me and Kathy Griffin outlined the issues in a previous post called Signing Your Life Away. Click here for the story Signing Your Life Away.

Well, Saturday night I raised the challenge and refused to sign.

The staff person handed me a pen and the paper and was shocked I wouldn’t comply. She became insistent and said, “But you have to sign, we have to file this paper.” So I wrote her a note on a scratch paper and I’m sure she thought I was being a smartass. (Maybe I was.) I read her the words, “responsible for deterioration in condition” but I don’t think she was even listening to why those words were offensive. She was just upset I wouldn’t sign the “official” paper and now she would have extra work to do. I could almost here her thinking, “Why on my shift?”

I thought about it all day Sunday, my husband wisely told me to choose my battles, this was a small thing. I told him Rosa Parks refusing to give up her seat was also a small thing. Of course, then he told me I was being over dramatic (I was) but… I decided this was so small, it was a battle we could win.

When we brought Aaron back on Sunday night, I thought it might console the staff person if I made up a formal release form with the same format as the first paper, just omitted the offensive words. Then she would have a paper to file. She finally said I should call the supervisor, it wasn’t her issue. (Which was true.)

I spoke to the supervisor on Monday and he reaffirmed how important that paper was. All of a sudden this paper was saying all kinds of things it didn’t say: the parents would be giving the medications, take the person to emergency care if necessary…. When he finished I explained I had no problem signing a paper saying I would take responsibility for Aaron and make sure he got good care, but I would not sign a paper saying I was responsible for his “deterioration in condition”. (Geez, I get upset just typing that phrase.)

He couldn’t understand why I wouldn’t sign it when I have signed it all these years (good point). I told him every time I signed it, it was a dagger to my heart.

I explained we were Aaron’s guardian and of course we could give him emergency care. And besides that was not what the language said on the paper. He told me to go up the food chain and call the person in charge of Human Resources.

I really do hate being a trouble maker. I want everyone to like me, and particularly I am always afraid they will take my bad behavior out on Aaron. But sometimes you just have to do what you have to do.

The person from Human Resources called just now, she was appalled when I read the wording on the paper. She reiterated what the supervisor said the paper was supposed to say. And she said she would fix it.

Period. Done (I think). Job done. Amen. Alleluia! One small step for man…

Next week when we again pick up Aaron, I fully expect a new form to be in place. And just maybe, “herby” will be gone and replaced with “hereby”. Goodbye herby.

I’ll let you know. But I think this was one small victory for the good guys! And like Bronfenbrenner says, everything is connected. See post here. Perhaps this will trigger other positive changes.

Call to Action:

What small act can you do today to advocate for someone you care about? Share your success/ challenges in the comments below. Maybe our community can help. We have some world-class advocates here. Let’s make a difference.

Keep Climbing–onward and upward.

All the best,

Mary

Hi Everyone,

ClimbingEveryMountain.com is celebrating its first month.

Thank you for being a part of our growth. Our Basecamp is developing and some great people are starting to gather for our climb. So, it has been a great start.

There is a lot to learn, and our site is still pretty primitive according to other websites, but we’ve added Google Analytics (Aug. 16), Akismet to help filter spam and there is now a way to sign up for subscriptions.

The Google Analytics report is only from Aug. 16th, but it says 91 people have visited the site from over 10 countries. There have been 130 visits which averaged 2.15 page views a visit, 3.44 minutes each time. There were 279 page views all together.

I’m glad I took statistics in college (God, quit laughing) but I’m still trying to decipher all the information.

This is the beginning of an amazing journey. I’m starting to connect with many of my earlier friends from TASH and other organizations. Ann Turnbull has generously given of her time, expertise and encouragement. Anne Bauer, Becke Martin and Kathy Hulgin have been most encouraging. We’re starting to see some parents. Thanks for the referrals from Patty McMahon at the Hamilton County Arc.

So, we’re off. Maybe we’re just strapping on our boots at the beginning of this journey, but at least we have begun.

Thank you for being part of our community. I’m hoping next month we’ll see more visitors, more parents willing to engage in conversation and comments. I know most of you are not shy, so speak up in the comments and tell me your thoughts.

Keep Climbing–onward and upward.

All the best,

Mary

Why do we go to school?

Is it to go to magical places?

Is it to make friends?

Is it to give Mom a rest?

Is it only to learn to read and write?

When our country was founded, education was generally for the male children of rich property owners. They were to prepare to become businessmen and the governors of the lower classes.

Is the reason we go to school the Jeffersonian concept that a democracy depends upon an educated population?

This philosophy teaches we need to learn everything we can so we can become knowledgeable voters and dedicated citizens and see things from many perspectives.

Not everyone agrees, many public media personalities seem to suggest the purpose of the school is to teach everyone to think the same way? Their way. And if you don’t they will pull their children out of public school and either home school or put them in private schools where they can control the curriculum.

But what about people who are different, including people with disabilities? One quote is: “The true measure of society is how it treats its most vulnerable citizens.”

So, is part of the reason we go to school to learn how to live with society’s “most vulnerable citizens”?

Is the American school still the great melting pot that gives us all a common experience? and sees value in our diversity?

This is certainly the goal of inclusion. See related post What is Inclusion (click here). If everyday ALL children go to the same schools, there are valuable lessons in just being together with people who are different than we are.

I remember in the late 90s, I took my Introduction to Exceptionalities classes to our university library. Their assignment was to research one of the high school textbooks in American History, Problems in Democracy or World Histories and look for pictures or references to people with disabilities. Many of these college sophomores were able to find the same textbooks they used when they were in high school. Out of the 20 different textbooks they evaluated, no textbook had more than four references to anything about disabilities. Usually there was one reference to Helen Keller, one to the fact that President Roosevelt used a wheelchair, and a third to the American with Disabilities Act. In several of the textbooks, the only other reference was that “deinstitutionalizaton” caused many people who were mentally ill to become homeless. The picture showed a man sleeping on a park bench. That was it! And the last message was not positive.

People with disabilities have been basically excluded and invisible in the traditional curriculum. The new research in “Disabilities Studies” majors and minors across the country is a strong beginning and step in the right direction. Kudos to those who are pioneers in this new movement.

I would bet there is still a scarcity to references about people who are elderly and of other minorities, though I think the textbook companies are trying harder to include at least some minorities.

What is the purpose of education, except to prepare each of us in the attitudes and the vocational, domestic, community, and leisure skills we need to function successfully the 50-60-70 years of the rest of our lives?

To learn to make choices. To learn to ask questions. To learn to solve problems. To learn to work and live together. To learn about ourselves, our own learning styles and ways of making sense of the world.

Schools and Parents

One teacher, one therapist may be great for a year or two but professionals come and go. The parent is the constant in a child’s life. We are the experts on our child’s likes and dislikes, their learning styles and behavior in the home and community. We know our child’s history better than any psychological profile that sits in the school office.

Our role as parent is a difficult one because we represent the continuity of our child’s life. We know our neighbors, our community, the life our child has outside of school. Check out related story: A new year of learning (click here). We can share our child’s dreams for the future and help them to come true. Each day we are challenged as “care managers” to insure cooperation and creativity among those who provide service to our children.

Each day, as our children climb on the school bus, they are a step closer to being adults.

Each day, we must ask ourselves: “Are the skills they are learning going to prepare them to become productive adults?”

The school year is a precious opportunity for new growth. An opportunity to forget the hurts of the past, no matter how difficult. A new school year is a fresh start.

Build that future dream with much hope and picture the magic bus that can take you and your child into a year of wonder and new learning.

Where do you want the magic bus to take you?

Tell us in the comments. I’m hoping the magic bus drives me out of blog fog and into blog heaven.

Keep Climbing–onward and upward.

All the best,

Mary

A New Year of Learning

This is an updated article from when Aaron was 8 years old and Tommy 6. Enjoy!

It was the weekend before school began and Cincinnati was sweltering from a week of 90 plus temperatures with over 50% humidity. And partially because most of our neighbors don’t have air conditioning, and partially because we enjoy each other’s company, we were all sitting on the porch steps waiting for the street lights to signal the time for baths, bedtime and the end of summer.

Several of the children were busy with final rehearsal for the “Ralph Avenue” version of Snow White and the Seven Dwarfs. Erin was the wicked queen, Allison the prince and the other children Eric, Patrick, Tricia, and my son Tommy were assorted other characters. The kids ran in and out of the yards wearing their winter caps with the tassels dropping over, trying to look like dwarfs. After a while, the box from Allison’s mom’s new stove changed from being used for the stage scenery to became the cool hideout.

Patrick’s mother was telling us a newspaper reporter stopped by her house to do an interview with “a new kindergartner.” It would be a three part series on Patrick’s impressions before school began, during in January, and a third article after in June. The poor reporter had a time of it because every time she asked Patrick (5 yrs.) about the imminent kindergarten experience, Eric (6 years and a kindergarten veteran) would give his answer. She said there was an hysterical discussion about the proper way to decide, “Who would be picked for the cookie passer?”

The beginning of school is very traumatic for me because of our continuing problems with the special education school program for my son. Aaron has the label of autism and severe intellectual disabilities. A new year signals the beginning of another year of battle for inclusion.

But maybe because it was too hot and maybe because I was surrounded by friends I continued to sip my ice tea and enjoy the normal conversation of my neighbors.

Patrick said his favorite football team was the Jets. His brother Michael, age 3, noting the adults’ interest, announced his favorite team was “the helicopters.” Jets—helicopters, why not?

Tricia’s soccer team won every game last year with a very gentle and knowledgeable coach. This year they won their first game but the new coach yelled and screamed and was upsetting the team and their parents. The parents wondered if victory was worth the price?

Moments that make parenting fun

Tommy went for his school physical and when the nurse asked him to urinate into a cup he burst into tears. As I pointed to the counter and its rows of labeled cups I told him everyone—even grownups–have to do this. Sobbing he said, “Okay—but I won’t drink it.” Later he asked, “Mom, why do they need a toilet in there is everyone pees in a cup?”

My friends and I exchanged sale prices on jeans and problem solved about the best backpacks and gym shoes with shoelaces that didn’t need to be tied.

We laughed, reminisced about summer, and shared the thunderstorm warnings. Eric’s Mom passed out popsicles.

All this time Aaron was walking up and down following the crowd of “dwarfs” as they flitted from yard to yard. He didn’t get a lot of direct attention, yet he was part of the group. For a time they all put on football helmets and Aaron went over, knocked on them to hear the funny sounds and everyone giggled. Aaron got quite excited and even though he is tactily very defensive he allowed them to place the helmet on his head, for a minute anyway.

Tommy brought out his golf clubs and soon Eric and everyone tried a few swings hitting a large flowered ball. Once Aaron was too close and thoughtfully Patrick took his arm and helped him get out of the way and Eric adapted and shortened his swing. Then the crowd was back down the street again. This time Aaron waited for the abandoned golf club. He bent over and balanced perfectly picking the club out of the grass. He began in his own way to hit the big plastic ball around the yard. Then he too lost interest and headed back down the street to find the other children.

Four years ago, the same day we moved into our home, a group of people on the other side of town filed a lawsuit to protect their neighborhood from the “danger’ of a proposed group home for people who were labeled mentally retarded. I remember my worry of meeting our new neighbors and their reactions. What would be their concerns, fears, would they allow us into their community? There have been awkward moments when Aaron would do something inappropriately. But then “normal” “regular” young children have their good and bad moments like the rest of mankind. Now Aaron was just Aaron and each neighbor had worries about jobs, children, families—the usual. We were a part of their neighborhood, their community.

As the sky darkened and the parents began to gather up the toys, football helmets, golf clubs and the talk again turned toward getting the children to bed so they would be fresh for the first day of school, I couldn’t help but think of how children and adults learn.

We use our creativity for Snow White costumes and playing with discarded boxes. We use our problem solving skills to find sale priced jeans to stretch our budgets. We use skill development including repetitive drill and practice for playing soccer and for picking up golf clubs out of the grass. We build on our experiences and associations whether they are jets and helicopters, cups and drinking, or how we feel about people who are different than we are. We also learn from people, some of whom are rough coaches, some parents, some newspaper writers, and some—neighbors.

School may begin tomorrow but in our neighborhood a whole lot of learning happened tonight. And perhaps, just perhaps—because Eric and Pat and Tommy will grow up with their incidental learning, experiences, associations and relationships with Aaron, the years of battles for belonging, full inclusion and citizenship will be shortened and our war for acceptance will be won.

Sometimes the make-believe lessons of Snow White overlap with the real world lessons of our family. After all, wasn’t Snow White the one who sang: “No matter how your heart is grieving, if you keep on believing, the dream that you wish for will come true.”

Keep believing, keep dreaming and a Happy School Year to All.

YOUR TURN

Has our dream of inclusion for all kids come true? Certainly more children now have the opportunity. Aaron, Neil Roncker, Jenni Wetzel, Julie McMahon–they were the first kids in the doors of the public schools in Greater Cincinnati. I believe with all my heart they touched the lives of their peers who are now grown and sending their own children off to school.

And some of these young parents became the doctors, teachers, bus drivers and parents of kids with special needs. Our lives really are all part of each other, all part of the circle of life. I hope this new generation feels better prepared. I hope the schools their children attend are also better prepared. I hope our communities are more welcoming to those who have differences.

What dreams are we still wishing for? What lessons are we still learning?

Please leave a comment so we can celebrate this new year of learning.

Keep climbing–onward and upward.

All the best,

Mary

Signing Your Life Away–literally.

We usually pick our son Aaron up at his house on Saturday night at 5 PM and then bring him back Sunday night between 7-9 PM. And each time the residential staff person asks us to sign this form from the “company”:

RELEASE OF RESPONSIBILITY FOR LEAVE OF ABSENCE:

I, the undersigned, herby (sic) accept responsibility for …………………….while away from …………………… and absolve the management of said facility, its personnel and the attending physician of responsibility for a deterioration in condition, or accident that may happen while the resident is away.

For those of you who can’t believe this institutional baggage could still be around in 2010, you probably also can’t believe that “herby” has been faithfully photocopied and misspelled for all those years.

So me and “herby” are going to make a change. Starting today, I WILL NO LONGER SIGN THIS FORM.

Over the years I’ve gone from being mad, to sad, to frustrated, but now I think it is best to think comedy. (Say this in your best whiny Kathy Griffin’s voice and imagine a monologue from the queen of dish.)

“Actually to be on the agency’s ‘D’ list would be a step up. So, what the heck? It’s been at least 4 days since the supervisor decided I’m no longer public enemy number one–the queen of mean, so I should have enough social collateral to take this on, right?”

No matter how much the staff people beg that they are just doing their job and they will get in trouble if the form isn’t signed, I’m just not going to do it!

Now before anyone starts cheering please remember that in the ten years Aaron’s been in this residential and day program, he has regressed and there has been significant deterioration in his condition and skills. Yea, it’s documented. Remember all those accursed meetings?

But rather than blaming the loss on the parents and adding more passive aggressive guilt, let’s consider that maybe, just maybe, the ‘deterioration’ happens the 6 days a week when Aaron is in THEIR “professional” care.

And just what is “deterioration” anyway? It sounds like a remodeling job gone bad. Is that like when the concrete foundation starts to flake and fall apart? Do people actually deteriorate? Is that what all the plastic surgery is about? Face lifts, tummy tucks…worry that the concrete foundation is crumbling? Dr. Deterioration to the rescue?…”

Now Kathy Griffin would continue this comedy skit with some great anecdotes and have us all laughing. I can think of a staff person who said they didn’t have to brush Aaron’s teeth twice a day because “he didn’t brush his teeth twice a day.” Another staff person complained, “Why would I waste money and wash his hair everyday with shampoo. I only use shampoo once a week?” Or, “black socks are hotter than white socks, so you wear black socks only in winter.” (Actually this last one was in a day program and when I said there could be white wool socks, or black cotton socks–the color was not the issue–the staff person didn’t understand what I was saying.) Yes, indeed these could be great skits.

I’ve complained over the years about the wording on this form but the poor direct care staff in the house have no idea where the form came from, it has just always been there. They are caring people who have often had their own hard luck. They are making a little more than minimum wage. Some people might give them a nod and tell them they are doing God’s work, but society does not value the job they do.

So… drum roll… what to do? Probably the hundred or so family members who are signing this form are concentrating on the task at hand, giving their loved one a nice experience. It’s JUST A FORM. Life is all about choosing priorities. Choosing your battles. Is this worth an all out assault? Will haggling the company about this form make Aaron’s life better? Will it make my life better? I’ve put up with it for 10 years because I didn’t think so.

But the issue is, none of these “professionals” even knows how hateful and insulting this language is to families. They never put themselves in the families’ position; see it from their point of view. The fact when I was interviewing agencies, the first words out of their mouths were, “Oh, we love to have the family involved.”

And then after time, it becomes very clear that what they really meant to say was, “Oh, we love to have the family involved. We expect you to lavish us with praise and money, but then trust us unconditionally and ask no questions.”

Every good comic act and story needs a twist. So….what would Kathy Griffin do?

Maybe the solution is that next week I bring in MY OWN FORM. Before I give Aaron over to their care, I tell them THEY have to sign the form. They have to take responsibility for any regression and deterioration in Aaron’s condition.

Perhaps if the company had to own up to the undertrained, underpaid, undervalued staff. Perhaps, perhaps, perhaps…. Hell, they’d never sign it.

Take the stage–Passing the Mic

Do any of you have any great one liners you could add to our comedy routine? Have any of you had similar experiences? What kinds of forms do you sign to check your child in and out of their homes?

Share your ideas and keep climbing, onward and upward…

All the best,

Mary, herby and Kathy

Catch the followup to what happened click here

“Forgetting Spells” Inclusion and Happy Endings

Looking for the Village WiseWoman

When I get depressed, I like to pull out a Nora Robert’s book. Don’t laugh:)

For a couple hours, I let the queen of romance weave a tale about another world where, no matter how impossible the conflict, the heroes and heroines will overcome all odds and there will be a happy ending. If only real life was like that. Sigh.

In Nora’s book, “Once Upon A Rose” the village WiseWoman conjures up a “forgetting spell” which protects a baby girl by making her invisible except to those who will wish her “good will”.

Of course any time magic is used, there needs to be a sacrifice to restore balance to the universe–so in this story the mother dies so the baby can live. Of Course.

In my last post, I talked about Balancing my child’s needs and mine. (Click here)so I’ve been thinking about balance, sacrifice and love.

I’m hoping a WiseWoman will come along and cast a “forgetting spell” on me. I’m saying this because I think “forgetting” is the key to solving so many of our problems. What if we could cast a “forgetting spell” so that Aaron would only be seen by those who wish him well? He would be surrounded by people who care about him.

I always felt “Inclusion” and blending into the normal life of a neighborhood is Aaron’s greatest safety–just as animals are protected by camouflaging themselves into their environment.

Success Story 1

Last week early one morning, the van driver from Aaron’s day program and his residential caregiver were having words in the driveway of Aaron’s house. GEESH! After all the community building I try to do with the neighbors GEESH ALMIGHTY–the normal adults (the paid professionals who are caregivers) are practically coming to blows in the driveway. And who do they call to fix it? NOT the two different agencies who are making thousands of dollars on Aaron, no of course not–they call me.

So, I handled it! YEA ME! It took several phone calls and a couple hours work, but starting next week a new van service will be providing transportation. Hopefully it is a win-win situation. Most of all, Aaron won’t have to have an emotional stressful start to his day. And any neighbors who might have noticed the commotion will forget about it and Aaron will go back to being invisible. He will just be a normal guy being picked up. No one will notice or be concerned. If there is ever a situation where Aaron is in trouble, I’m hoping the “forgetting spell” will bring out those who wish Aaron “good will” and they will speak up and protect him.

Success Story 2

Because I was unhappy with some of the things in Aaron’s life and took action, the agency which supports Aaron in his day and residential program have been very upset with me. I was the Wicked Witch, the Mother from Hell, the woman who just kept making trouble, anything but the “WiseWoman.”

Well, about 8:30 this morning, I get a call from the supervisor who previously would hardly even talk to me. He called and said our loving staff person who has been with us for over 8 years had a family emergency. Could I possibly go to Aaron’s house?

In twenty minutes I relieved the staff person and held down the fort until the supervisor could get there. In that time, I took both the guys to the bathroom, plunged the stopped-up toilet, and threw a load of clothes into the dryer. I got the guy’s back-packs and lunch boxes ready and when the supervisor arrived was able to give him directions to Aaron’s program and help them into his car.

I felt really good I could help our staff person, Aaron, his housemate and the company. I also felt good that they called me. It was the “community” the “team” the “extended family” I was always talking about.

What struck me was how the attitude of the supervisor had changed. Of course I can’t speak for him, but I think this was a transformational moment in the way he looked at my role as a mother and as part of the larger ecological support system (see related post).

At one point I almost thought he was going to give me a hug. This was incredible because only a couple days ago, I would have put money on the fact he was purposely trying to “punish” me for challenging his agency and his authority, adding roadblocks to our already difficult and complicated life.

Happy Endings

I wish I could craft a romance writer’s tool and create a nice story arc which would tie up this story in a nice circle. There was an opening conflict, it was resolved, and both parties were changed. But “happy ever afters” are just in fairy tales and romance novels.

And unfortunately Aaron’s story will have another opening conflict tomorrow and tomorrow and tomorrow.

And that is just normal life. It is true of every person’s life, not just people with disabilities and their families. The morning after… always opens a new chapter.

So just having a happy ending for one day is okay.

Our staff person’s family crisis worked out okay. She called and thanked me for being someone she could count on. Which is perfect, we need each other. But the big change is that I don’t think the supervisor will ever again see me as the “Wicked Witch” or “Mother from Hell”.

I’m sure we will have more disagreements. He is the representative of a company which has few resources and lots of responsibility and I am the mother of a 35 year old person with autism and severe disabilities who needs lots of resources and lots of responsible people to care for him.

But today we didn’t need bigger-than-life heroes and heroines who did heroic deeds, we just needed WiseWomen and WiseMen.

And maybe today, I’ve had my own transformational experience. Maybe when I am looking for the village WiseWoman to create magic, I’ve learned that WiseWoman must be me.

Today felt like it had a “satisfying ending” even Nora Roberts would approve. And maybe more days with just plain old “satisfying endings” will lead to that elusive “happy-ever-after” for Aaron and all people with disabilities.

Are you becoming a WiseWoman or WiseMan?

Tell us your story or experience with forgetting, and happy endings.

If you liked this story, sign up in the “Get My Newsletter” box (top left). Also, I would appreciate it if you would use the buttons below to Tweet, send to Facebook or whatever your favorite social media. Thanks for being part of our growing community.

Climbing a Mountain is a Team Effort, each person is important.

All the best,

Mary

Roberts, N. (2001) Once upon a rose: anthology. New York: Penguin Putnam.

Balancing my life vs. my child’s: Until my dying breath…

This is going to be a tough post. I might chicken out and not even publish it. I don’t want it to be a pity party: “You parents go through so much. You are Saints”. God Forbid!

See Aaron playing the key?

But I am hoping this message will give other families a chance to take a breath and allow themselves a little slack. For those of you who are professionals, I hope it gives some insight into the choices families make–usually at a cost.

Families make hard choices all the time

All parents of young children, and adults who are caring for their elderly parents experience these same dilemmas. This is a well known problem in our culture and effects most families.

What is different for parents whose children are adults with disabilities? This intense care is usually not discussed or understood. It is not a time-limited situation where your child grows up or your parent dies.

Aaron is 35 years old and as I get older this is a growing issue. We are talking about–well, until my dying breath.

First Sign of Growing Old

I’ve been having lumbar back pain and had to begin a series of injections and other stuff. This is the first major medical issue I’ve ever had, so I have no right to complain. Plus my philosophy is that anytime a Doctor can actually “fix” a situation, I consider it a temporary problem and a medical victory.

BUT the bottom line was that for the first time ever I had to cancel Aaron’s doctor appointment.

I consciously chose my needs over my child’s.

I’ve had pain before, sure. But that has never stopped me, so why was this time different?

What was I thinking?

* There was the 50 mile round-trip drive to Aaron’s Doctor, the only one I trust who takes a medical card…

* Aaron goes every three months and didn’t have any major issues…

* We bring Aaron home with us every Saturday night. Whenever we take Aaron to the Doctor, we keep him both Saturday and Sunday nights and try to schedule on Monday morning…

* Monday mornings are the busiest day for the Doctor so there is always a long wait in a room full of sick people… Aaron is not a good “waiter”…

* I feel bad about the last minute cancellation to Aaron’s doctor, we try to be respectful of his time. If we have to pay the $30. charge, so be it.

* I always bring flowers to the receptionist in the Doctor’s office. She takes a special interest in Aaron and always gives him hugs and makes him smile. (I know, I know, amazing that I would spend energy on flowers for the receptionist–but she is one of the few people who get excited to see Aaron so that makes me happy too)…

* Going to the doctor takes a full morning…

* After the doctor visit we take Aaron out to lunch and then drop him off at his day program….

* Monday is the “community outing” day at the day program–so when they actually do what they say they are going to do (we won’t go there)…that means the group may or may not be in the building when we want to drop Aaron off…

* If the day program group is not there then we have to leave Aaron with the director who just puts Aaron with a book in a separate room and ignores him, a safety worry…

* The day program has Aaron’s noon medication, so the good thing is he will get his noon meds on time…

* The bad thing is I will have to be face-to-face with the director, who is a good person just has no resources. This means I will ask, “How is Aaron doing?” and the director will tell me they strongly think Aaron should be in diapers and have his meds increased… which will lead to… (let’s just say) be stressful for both of us and reinforce my reputation as “EVIL Parent and Day Program Public Enemy Number 1″….

I wrote this all out in stream of consciousness because this site is about climbing every mountain and mountains always have streams– did you like that analogy:) But, like most people, I think our conscious run streams of pros and cons with every decision we make.

Second and Third Thoughts:

I accept it, but I am not proud I made the decision to think of myself first. But when we took Aaron back to his house on Sunday night and I was hardly able to walk on Monday morning I knew I did the right thing. There is no way I would have been physically able to give Aaron his bath, breakfast, and go through all the steps outlined above.

So Aaron will live, I’ll get better. But how soon will it be that either myself or my husband will have some serious condition where we require medical care and can’t take care of Aaron? I look at Aaron’s housemate’s (click here) parents. They are in their 80s. They have done an admirable job, but age has now made them just as vulnerable as their son. Soon it will be my turn.

Damn! Why is this so hard? Why do I feel Aaron’s quality of life is ONLY in the hands of his family? We are fortunate to have some good professional people in Aaron’s life. But why do the thousands of dollars being given to the agencies–who are supposed to be providing Aaron care–don’t care?

There is a huge difference between providing “care” and “caring”.

Okay, getting old is tough for everyone, share what you are thinking:

This story is from 1981 when Aaron was 7 and Tommy 5. We were in the middle of our lawsuit against Cincinnati Public Schools to allow Aaron to be able to go to public school. Enjoy.

At the end of our street is a pond. Our family often takes walks down there to see the ducks and give them bread crumbs. One day last summer, an old man was down there and said: “Did you see the handicapped duck?”

Well considering I was pushing my seven year old son with a severe disability in his stroller, and considering the 24 hours a day I spend thinking about people with disabilities–this was really too much.

The friendly man went on, “Probably a frog ate his foot or maybe he caught it on the fence…”

Sure enough, there were about 40 ducks and one duck was missing his foot and about one-half of his leg. The duck hobbled toward us but when Tommy tried to pet him he scrambled for the bread crumbs with the rest and then swam away.

Before we left, we did throw him some extra bread crumbs just because we wanted him to know we were friends who understood life’s little extra challenges.

I went home and joked to my friends that at least some humane society didn’t come and set aside a special pond for disabled ducks, start a supplementary training program and segregated nesting area–or some exploiter didn’t take him to Utah and enter him in some freak show for tourists.

We checked in once in a while over the winter, but I really was a lot more worried about people with disabilities than the ducks. We were trying to mainstream Aaron, into a public school. (This was before “inclusion” was thought possible.)

Yesterday the weather was warm so we walked to the pond and saw there were only about 15 ducks. We were only there a minute when that same man came running down full of concern. He told us someone was catching the ducks, putting them in plastic bags, throwing them into the middle of the lake and then watching them drown.

We were shocked. Who would do such a thing?

Meanwhile, the few ducks that remained came swimming toward us looking for the bread crumbs. Guess What?

The “handicapped” duck was among the survivors.

I’m not sure what this all means or why I thought to write about it, but with all the cutbacks and anything else they can think up–I think the duck gave us a message–we’re going to make it. There are some mean horrible people out there, sure. But there are also wonderful people like the man who cared for the ducks. There is risk being in the community–but that is also where there is safety.

This week Aaron learned to peel his own banana, he went boating and he saw a “handicapped” duck that was smarter than the non-handicapped ducks. We also just need to get smarter.

The dream… it lives!

Quiz: For those of you who read the story about the difference between disability and handicapped (click here) and tell me. Did our duck with the one leg have a disability, a handicap, or both?

Share your Stories of Hope

What helps keep your dreams alive? Any duck or pet stories?

I am going to update some of the better articles I’ve written for my classes, parent newsletters and magazines. Hope you enjoy them. Here is the first from 2001.

“Help the mentally retarded! Help the mentally retarded!”

I had just bought my 99 cent grapes, a pounds of hamburger, loaf of bread and was leaving my grocery when I was met by three older men wearing brightly-colored vests and hats with tassels, holding little cans and urging shoppers to “Help the mentally retarded!”

I grabbed my groceries and, not even looking up, hurried to my car. As I passed, one man said (in a very superior) voice, “Not all babies are born healthy.”

I felt my face flush and when I paused, he went in for his killer argument, “We aren’t ALL blessed with normal babies, you know!”

Well, that did it. Turning, I said, “I have a child who has the label of mental retardation and I think it is very condescending to have to beg to raise money for quality services.”

Well, the men and their swinging tassels all stopped and circled me. They were aghast. “What do you mean?”

I thought about just grabbing my bags out of the cart and running to my car, but instead looked him right in the eye. “People who are retarded need real opportunities. They can be valuable workers and contribute to society. Retarded people as objects of the mercy of others reinforces the negative stereotypes of the past. In fact, now we call them people with intellectual challenges and don’t even use the word retarded.”

“But honey, last year we raised over $300,000 in our state.” The man straightened his hat and looked like I had sucker-punched him in the gut. “One-third of that money is going toward adding a retarded adult wing onto Children’s Hospital. Also we began a new women’s group home. We stand here in the rain and cold to help. We are volunteers. We don’t get anything out of this.”

At the entrance of the store a crowd was now gathering. I knew he was probably a nice man only trying to do his Christian duty. He was sincere and dedicated, only ignorant of the principles of normalization and inclusion. The staring and frowning faces of the crowd told me they were on his side. I half expected flying can goods to start stoning me. After all, who takes on God’s Knights right in front of Krogers?

I certainly didn’t plan on making a scene. So, giving the man a smile, I just said, “Well, I serve people who are retarded in other ways” and tried to push my grocery cart around him.

He gently put his hand on my shoulder and assured me that God would take care of me and my son. Then, to show no hard feelings, he put three Won’t you give an extra inch? wooden rulers into my bag.

Well, once again I had done it. My husband is always telling me to lighten up and get a new hobby. For Pete’s sake, here I was in a confrontation in front of the grocery store.

Perhaps next time I’ll just drop a quarter in the cup and make the man happy… but… in the meantime, I’ll work “inch by inch” to replace the poor helpless eternal child stereotype with an image of a citizen with real value, dignity and rights.

Share Your Thoughts

How would you handle this? Have you had similar experiences?
The kicker is that Children’s hospital no longer even wants to serve adults with disabilities.