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Archive for June, 2011

What would you do? | Case of Trash vs Treasure

Image017
Creative Commons License photo credit: aslinth

This is the 3rd in a series of cases of “What would you do?”

The Case of the Shoes on the Wrong Feet

The Case of the Lourdes Holy Water

What would you do? The case of trash vs. treasure

We usually pick up Aaron, our 36 year old son with the label of autism, every Saturday night and keep him until late Sunday night. We enjoy being with Aaron and this gives the residential staff a break.

Annie, our head staff person, has worked with us for over 8 years. My husband and I always enjoy seeing her and not only sharing Aaron stories, but hearing how her life is going. We’ve developed a close relationship over the years and I count her as a friend.

We’ve been trying to get rid of some old exercise equipment Aaron no longer used, so when Annie started out the conversation with, “The junk man came…” I thought I knew where the conversation was going and was in the process of thanking her until she added,

“The junk man stopped at the house, so I gave him the boxes in the garage.”

“Which boxes are you talking about?”

I asked her if she went through the boxes first. She just said, “They were the boxes in the middle of the garage.” And seemed genuinely surprised I would be concerned.

When I reminded her we had brought some of Aaron’s things from his closet at home to store in the garage, she simply said, she forgot.
My husband tried to lighten up the conversation, but I was stunned.

And actually, a week later, still am.

Whose house is it?

My husband and I have been trying to sell our house. The realtor and home stagers suggested we take down all personal family pictures and move anything we weren’t using into storage.

Now, Aaron had lots of storage space in his garage. I certainly wouldn’t put our stuff in there, but it seemed reasonable to store boxes of Aaron’s things from his room at home.

Personal Items:

I always like to surround Aaron with pictures on the walls in his room because 1) he likes to look at them, 2) they remind him of the people who love him, 3) I want staff/visitors to know something of the people in Aaron’s life, and his personal history.

Yep, the picture collages fit just perfectly in some old boxes and suitcases. I padded them with blankets, a quilt from Aaron’s grandma, and other clothes.

Also in the boxes were Aaron’s little treasures from his life. For instance, there were some music globes that Aaron will play with from time to time and each time he took horseback riding; they gave him a horseshoe the last class. Now, prospective house buyers don’t need to see 12 horseshoes in various colors with ribbons. But, they represented happy memories and Aaron’s achievements.

Also over the years, Aaron had quite a collection of wooden puzzles. We don’t get them out very often because they aren’t age appropriate, but I thought they would make a great present to Aaron’s niece when she turns three in another year.

Also, there was a box of used encyclopedias. Aaron loves to look at these books with pictures, and it is so hard to find them, I buy them from used book stores or yard sales whenever I see them.

And, who knows what else was on the “pile of boxes in the middle of the garage?”

So, what would you do?

The boxes and old suitcases contained stuff that belonged to Aaron. Not mine, not Annie’s, not belonging to the “house.”

The boxes were long gone, the damage was done.

It’s not like they were the family jewels. I bet the Junk Man will only make a couple dollars. They were some used books, puzzles, and old horseshoes for Pete’s sake.

And, since we don’t REALLY know what was in the boxes, maybe some of these “treasures” are in the million other boxes in our other storage units. Maybe some of these things will turn up.

So, what’s the big fuss?

In the comments please share your thoughts and ask your social networks of Twitter, Facebook, etc. if they have any answers.

Comments

Remember there are no “right or wrong” answers.

Please share your thoughts. What would you say to Aaron? To Annie? To other residential staff persons? To Aaron’s case worker? To the administration of the company providing residential services? To anyone else?

What attitudes and messages does this convey for the individual with a disability, the family and/or the culture?

How do you resolve this? How many times do you forgive these mistakes?

As a parent, am I overreacting? What should I have done differently?

As a parent, how do you choose your battles for advocacy? After all, these people take care of your child every day, and Annie has been with Aaron for over 8 years.

Keep Climbing: Onward and Upward,

All my best,

Mary

Related Articles (real estate, home stagers…):

Turning it over to the Real Estate Professionals and all Professionals

Memory Rocks| Not being objective

The Host vs. The Home Stagers

The Avalanche and an Aaron story

What would you do?|Case of Shoes on the Wrong Feet

In the last post, What would you do? | The Case of the Lourdes holy water, I asked for your advice. Here are my next questions:

DAY 39/365: Laced Up
Creative Commons License photo credit: dcosand

What do you do when you go to pick up your child from their home with residencial services and find problems with their personal appearance?

True Story 1: Shoes

Scenerio A

We walk in the front door to pick up Aaron, smile at him and then ask the caregiver, “Are Aaron’s shoes on the wrong feet?”

My husband and I trade “looks,” sit next to Aaron on the couch and change his shoes.

What do we say to the staff person?

Scenerio B

What do we do if Aaron’s housemate is the one with his shoes on the wrong feet?

True Story 2: Socks

We are helping Aaron undress at night. We untie, take off his shoes and find out his socks are turned upside down. The heal of the sock is squished up near the top of his foot causing a red mark. The sock has a grey area clearly showing where the heal of the foot is supposed to go, but it is on the top of his foot.

What do we say to the staff person?

True Story 3: Red Marks on Face

We give Aaron our biggest smiles as we walk in the front door of his house and immediately notice there are red marks near his nose, mouth and the sides of his face.

Mom says, “Aaron has red marks on his face, how did that happen?”

Staff person says, “I saw that, I’m not sure what that is, but I put some cream on his face.”

Mom goes over and traces the marks on Aaron’s face, “Gee, it looks like a scrape or burn.”

Staff is still sitting in her chair, but has put down her cell phone.

Dad says, “It looks like a scrape or burn from a razor. Which razor did you use, the electric razor or straight razor?”

Staff answers she used the straight razor?

Dad asks, “Did you use shaving cream? Was the razor dull?”

Staff person gets very defensive and swears it was a new razor and she used the shaving cream.

So, what would you do?

True Story 4: Roommate’s shirt

We are undressing Aaron for his bath. We notice the t-shirt he is wearing is too tight, we can hardly get the shirt over his head. Aaron bites his hand and is clearly aggravated. When we check, the t-shirt has Aaron’s roommate’s initials inside the collar.

So, what to do?

Aaron, our 36 year old son with the label of autism, has lived in a house with another man for over thirteen years. They have a 24/7 staff person who has the responsibility for his shower, grooming, dressing, and all self-help areas.

These examples have happened not once, not twice, but in the last thirteen years, many times. Again, this was on days when the staff knew we were coming. Who knows how many times Aaron went to his day program with shoes on the wrong feet? How many Saturdays has he been dressed in uncomfortable clothing.

So, what to do?

In the comments please share your thoughts and ask your social networks of Twitter, Facebook, etc. if they have any answers.

Comments

Remember there are no “right or wrong” answers.

Please share your thoughts. What would you say to Aaron? To the staff person? To Aaron’s case worker? To the administration of the company providing residential services? To anyone else?

What attitudes and messages does this convey for the individual, the family and/or the culture?

You can’t fire a person because of upside down socks—so how do you resolve this? How many times do you forgive these mistakes before you give them the boot?

As a parent, how do you choose your battles for advocacy? After all, these people take care of your child every day.

Keep Climbing: Onward and Upward,

All my best,

Mary

Related Articles:

Home: More than a Place

Caregivers Part 1

Caregivers Part 2

Caregivers Part 3

There is no spoon| Disability Style

What do you do?|The Case of the Lourdes Water

The Grotto at Lourdes
Creative Commons License photo credit: Lawrence OP

What do you do when someone wants to cure your child with Lourdes Water or the “laying on of the hands”?

True Story

“Where’s Aaron?” my mother asked while I was still putting the phone to my ear. I explained Aaron was at his house and we wouldn’t be seeing him until the weekend.

“Well, as soon as you pick him up, you need to bring him here. My friend got holy water directly from the fountain of Lourdes and she gave me a small bottle.”

I took a deep breath and knew exactly where this conversation was going. My youth was filled with The Song of Bernadette and books of Saints and miracles.

With more enthusiasm than I’ve heard from my mother in years, she said, “I’ll make the sign of the cross on his forehead and we’ll see if we can cure his autism and disabilities.”

I hesitated and didn’t say anything, but mom gushed about her friend’s trip, the history of Lourdes, photos of the shrine, and the walls of abandoned crutches each with written testimonials and pictures from the people who were miraculously cured.

My mom was eager to start her letter of Aaron’s miracle.

So, What do I say:

1. Mom means well. Her religion is important to her. She would love to be the one to “cure Aaron.”

2. This isn’t the first time this has happened. I’ve had strangers in the grocery line want to “lay hands on Aaron and cure him.”

3. I really don’t want to go down this road again.

So, what to do?

In the comments please share your thoughts.

Comments

Remember there are no “right or wrong” answers. Please share your thoughts. What would you say to my mother or another person who wanted to try and cure your child? Would you allow her to use the holy water on your child? What attitudes and messages does this convey for the individual, the family, the church, the culture?
Have you tried any miracle cures? If you don’t want a cure, what does that say?

Keep Climbing: Onward and Upward,

All my best,

Mary

Related Articles:

What is Charity and Love?

America the Beautiful
Family| The Circle of Life

A Quarter’s Worth of Advocacy

Better than Church

Inclusion for Moms| Sisters of the Heart

Lori Foster 2011

Inclusion for Moms| Sisters of the Heart

When Marsha Forest, Judith Snow, Jack Pearpoint and Father Pat started spreading the gospel of inclusion, they talked about the ABC’s Of Inclusion.

A = Acceptance
B = Belonging
C = Community

I’ve spent a lifetime learning and working for inclusion for Aaron, my son with the label of autism, and other people with disabilities.

But as hard as it is to create inclusion for Aaron, it is also just as difficult for parents to have inclusive experiences. Moms, Dads and Family Members are always being segregated into “special” groups… Special Olympics, Autism Speaks, Arc, TASH….

Gathering of Readers and Writers 2011

My Circle of Friends

Inclusion for Moms

Four years ago, I stumbled across an ad in our community newspaper about the Lori Foster Gathering for Readers and Writers. The “Gathering” was at a nearby Marriott Hotel and looked interesting. Plus, it had NOTHING to do with disability issues.

It became a transformational experience in inclusion–NOT for Aaron, NOT for Aaron’s mom, but for me.

ACCEPTANCE

Over 300 authors and readers of romance novels were gathered around tables in the conference room. Decorated baskets were being raffled and authors signed their books. Books were everywhere.

Many of the women were in costumes that corresponded with the themes of their books. They wore cat ears and tails, fairy wings, Victorian hats and jewelry, pirate and cowboy hats, wedding veils, capes, Hawaiian flowers in their hair… They were young mothers and white hair grandmothers. They were unpublished and New York Time bestselling authors.

I learned “romance” novels ranged from: sweet to exotic; contemporary to historical; “All-American” to English royals to Scottish highlanders to space aliens to vampires; time-travel, mystery, suspense and even inspirational tales of the Amish…. Who knew?

Hey, I guess if these women could dream up relationships with werewolves and fairies, they could accept anyone—even a plain old mom who’s got a kid who isn’t “normal.”

I was accepted.

BELONGING

In the first couple minutes, I was embraced as an old friend. It was that easy. I sat down and was welcomed into the group.

I didn’t have to join a committee, volunteer or sign any oaths of allegiance. I was okay just the way I was.

Some authors published several books a year. Several published none, but bought and read books—thus supporting everyone as loyal fans. There was a continuum and only support–no competition.

In “disability” conferences, there was stress. I was always looking for help for the current disaster in Aaron’s life.

There was always a pending national crisis: Special Education was losing funding; someone just died a tragic death in an “institution”; an amicus brief had to be written for an innocent person on death row; signatures were needed for some campaign or new legislation; some non-profit was going bankrupt…. There were always a hundred heartaches. Sure, there were people who supported each other—but they were often just keeping their heads above water.

SHARED INTERESTS

One of the requirements of making friends and community connections is about “shared interests.”

The women at my table shared stories of their favorite authors and books. They pointed out Lori Foster and Dianne Castell, the organizers. They gave me books from the “trading library.”

There were national issues about publishing, I met a woman who had been kicked out of the national RWA organization ten years ago because she wrote an “ebook” when only print books were considered legitimate. Changing paradigms is difficult, leaders struggle in every field.

But, there were no tears or gut-wrenching stories with no solutions. As the authors spoke of their writing, they added information about their family lives in Canada, Texas, California, Vermont or where they lived, but they were happy people. They had the usual family dramas, but that was not the focus of why they were in Cincinnati. Several people had family members with labels and disabilities, but the conversation was about writing and publishing–not a single IEP issue.

And, I belonged.

COMMUNITY

Proximity

People being together in the same place is another requirement for making friends and community connections.

The members invited me to join The Ohio Valley Romance Writers of America (OVRWA) chapter which met the second Saturday of each month. This became the highlight of each month. Each meeting had veteran writers giving clinics and informational sessions on branding, plot development, submission guidelines…. Though we socialized after, this was a serious professional group of writers. Some were stay-at-home mothers of young children, but there were lawyers, college professors, nurses, teachers…. Sometimes we would meet for a “Girls Night Out” or go out after the meetings.

Nothing against the “Mothers of Special Children” or the “Lakota Parents of Special Education Students” groups, but this was the closest to “normal” I’d ever experienced.

Sisters of the Heart

I thought of true stories of friends and relatives meeting their spouses, and decided to try my hand as a romance writer. What a joy to be thinking about happy stories, rather than writing about the autism wars or inclusion battles.

I started to learn everything I could about writing and publishing. I entered and judged contests, went to a writer’s conference in Columbus, local workshops. I was getting new skills…and new friends.

When I went to the Lori Foster Gathering the next year, I was an editor of a small e-publisher and had close friends in the Ohio Valley Chapter.

It was the first time in my life I was included, and it had nothing to do with disabilities. I was a person-first. Imagine.

I want a Happy-Ever-After

Last weekend was my fourth Lori Foster Gathering. There were 400 people from all over the continent. Proceeds from the basket raffles went to soldiers in Afghanistan, a pet shelter, and a local non-profit. We raised around $10,000.

And, we had a ball.

I laughed and cried. I talked about books, authors and only occasionally about Aaron. I actually went out to a restaurant and didn’t get home until almost midnight. I relaxed.

Many of my friends are now published authors. I’ve watched them grow and bloom. I’m so proud of them.

My core group of friends encourages me in my own writing and in my life as Aaron’s mom. They know some of Aaron’s story and our continued struggle as we try to find a home for Aaron, try to figure out the government regulations and funding. They read my blog (hi everyone) and are my biggest supporters as they retweet and spread the message on social media networks. Their questions help guide the information I give. We “inclusionists” often only talk among ourselves–what an irony. They help me spread the real message of inclusion to just good folks who live in our communities.

They are friends… and in the process have become sisters of my heart.

After all, “my people” know about more than just romance. They know about love.

They know the A, B, Cs. They may not be able to give a definition, but they know about inclusion.

They might call themselves writers, but they are also healers and teachers who are helping me find the land of “happy-ever-after.”

Keep Climbing: Onward and Upward

All my best,

Mary

Join in the discussion

What do you do to “include” yourself in the community? Are you a member of any social groups…? Do you agree parents and professionals often segregate and isolate themselves in the struggle for inclusion? Have you read any good “happy-ever-after” stories lately? Will our children with autism and other disabilities also find “happy-ever-afters”?

Related Stories:

Happy-Ever-Afters| Rangers and Kick-ass Aikido

Building Community| Wheelchair Becky vs. Flat Stanley

A Parent’s life| Thinking, Worrying plus Actions

Balancing my child’s needs and mine.