Grandma gets a Thong

The twelfth day of Christmas is actually Jan. 6th–Little Christmas, The Feast of the Magi.

Actually, it’s all the Magi’s fault. They are the ones credited with giving the first gifts.

Based on the number of people in line at the return desks last week, I’d say many people had problems with their gifts. (Actually I could see Mary and Joseph thinking the gold was useful, they could buy a wagon or better donkey, but what were they supposed to do with Frankincense and Myrrh. Myrrh–really????)

I know it is supposed to be the “thought that counts,” but it really is much more. Gifts are a whole cultural phenomenon.

My mother is 89.

Recently she’s had hip replacement surgery and has trouble shopping for herself.

Two months before Christmas she told me she wanted slippers. Slippers it is. I don’t have to guess her gift. And this is great…EXCEPT

Every day for the next month she would call me on the phone (usually at 6 AM because that is when she wakes up and is thinking about slippers) and define what kind of slippers. They had to have rubber soles so she could wear them outside if she wanted. And this is great…EXCEPT

She couldn’t tell me her size. It seems some Large slippers are size 8-9, some Larges are size 9-10. And the manufacture, design, model, production all make a difference.

I went to three different stores and brought her “Pair number one” on Thanksgiving. She didn’t even try them on. Which actually made it easier to exchange them, which is great…EXCEPT

She really wanted black. But none of the stores made black slippers. So, I picked out some navy size 8′s and 9′s and 10′s, and some pink (everything she owns is pink) in a size 8-9, and 9-10. And I figured I’d give her a choice. Which was great…EXCEPT

She decided she wanted slippers that weren’t slip-ons. “Only the devil would make slippers with open backs” and she has had slippers that covered her whole foot, well–her whole life. And, she thinks she has ugly toes, so–none of those slippers with toe cut-outs. So, I boxed up and returned the slippers. And it was great…EXCEPT

The next three stores didn’t have black or whole foot slippers. But they did have navy.

You know where this is going, right?

Yep, I rebought her the same slippers (that she wouldn’t even try on) from the first round. She opened them on Christmas and said they were perfect.

So, it makes you wonder.

Was the gift really about slippers at all?

Grandma and the Thong

The picture above is from a previous Christmas. My sister Martha worked in a lingerie store and gave each of the girl cousins a pair of thongs. They thought they were nice. Certainly something practical they could use. EXCEPT

She also gave one to Grandma.

The gift became an urban legend in our family. It brought down the house.

Even though mom didn’t even recognize the thong as underwear—it was the shared experience with her grandkids that made it the perfect gift.

Which again makes me wonder about gifts.

Aaron’s Christmas Gift and Charity

This Christmas Aaron went to a Christmas Party sponsored by a local non-profit. These are kind folks. Many of the people with severe disabilities are the poorest people in the county and don’t even have family members who can give them gifts. So, this is not only a nice gesture, it is an opportunity for these poor souls to get a little something extra.

This year the non-profit got items donated by local businesses to give as gifts. Over 150 adults with disabilities came to the Christmas Party and Dance.

There are so few recreation opportunities, many of the people put on their best clothes and showed up early. Many more wanted to come, but there was little transportation and they depend on staff–who didn’t want to bother.

At the party, even though they arrived early, there were only chairs for 100 people. So Aaron and Jack, his roommate, had to stand and hold their coats.

Since Aaron has balance problems, and couldn’t understand why he couldn’t sit down (people were guarding their chairs) he started biting his hand and pinching others. Not good behavior at a party.

Their staff person made the sensible decision to leave (even more people were coming in the already over-crowded room). Aaron and Jack were each given a “gift bag” at the exit. Which was nice… EXCEPT

The gift bag had a pair of donated slippers. Yea! I would be laughing too, slippers… EXCEPT

The slippers were size 11.

Aaron wears a size 9.

Now, no one with balance issues is safe wearing a pair of slippers two sizes too big. And, unlike my mother, these slippers were charity—donated. So there was no gift card or receipt, most people had no dutiful daughter, family or staff who cared to make an exchange.

And, Aaron couldn’t understand why anyone would give him slippers he couldn’t use. So he just carried the slippers around the house—making me crazy that good, kind people could be so dumb. After all who is the “intellectually challenged” person here? Did they think they wouldn’t notice the slippers didn’t fit? Or all people wear size 11?

Is “Just getting something to open” the point? Even if they can’t use it?

What is Charity?

If you plan a charitable event and are giving gifts:

Don’t

Don’t just arbitrarily pass out slippers, or coats, or T-shirts with misspelled words.

Don’t give radios with no batteries—because they want to use the radio that minute and staff often won’t be bothered with batteries.

Don’t give them things you couldn’t sell or are broken.

Don’t make your interaction a one-time-event.

Do

Do have a party with chairs and refreshments for everyone.

Do get to know people as individuals

Do think about what YOU would want to get

Do think about normalization, age-appropriate entertainment and gifts.

Do think about transportation and staff and family members

Do consider that the shared experience, like Grandma getting the Thong, may be the best gift ever—no excepts.

Keep Climbing: Onward and Upward

Mary

Comments:

Okay, best/worst gift stories? Am I just being an ungrateful jerk? What is the role of charity? Is it appropriate to give broken, torn things to Goodwill/charity? Only 258 shopping days until Christmas????

Blake Roberts an expert on DECtalk programming

Do You Hear What I Hear?

Do You See What I See?

In 1962, the song Do You Hear What I Hear? became an instant success when its lyrics asked us to hear, see, listen and “Pray for Peace, People Everywhere.” 1962 was a time of fear and uncertainty–much like 2011.

Today, as the year is coming to an end, I invite you to journey virtually to the Middle East–to the land of shepherds and millions of stars Listen and See this new version of a holiday classic.

‘Tis a Season of Magic

Blake Roberts and Pastor Snoopy Botten are musicians and visual artists who have collaborated on many CDs. Both are artists who inspire us to reach for the stars.

Their magic is their vision, talent and… a speech synthesizer with DECtalk software which helps people who can’t sing with words–sing with tech. Those who can’t see–paint with tech.

The result is poetry in motion.

Enjoy!

Do You Hear What I Hear? |Music and Visual Art

http://pastorsnoopi.twigs76.com/songs/DO YOU HEAR WHAT I HEAR.mp3

In Blake’s Words:

Dectalk is a speech synthesizer that can be programmed to sing. I like Dectalk because I enjoy making it sing. Additionally, an almost infinite number of voices can be created with it.

Snoopi is a good friend of mine whom I met on the Internet several years ago. We enjoy working together on the CDs Snoopi has produced over the past couple of years. I did all the DECtalk programming and Snoopi mixed my DECtalk file with the karoake track.

My friend Snoopi is the same Snoopi you know on Facebook.

Snoopi programs Dectalk because it lets people who can’t talk sing like everyone else. I program Dectalk because I enjoy it.

I program songs at the same level of excellence as Snoopi. In fact, I am slightly better in some areas. Snoopi is the best Dectalkist in the world, I am second best. We never intended to be first and second best, we just are.

In summary, programming Dectalk is my favorite thing to do. Blake

More information about Blake and Snoopi:

Click here for http://pastorsnoopi.twigs76.com/”> for an article about this unique team.

If you would like to contact Blake Roberts go to: beroberts@hughes.net

If you would like to contact Snoopi Botten go to: http://www.dectalksings.com/ or email Snoopi at dectalk@aol.com.

The video below is about Snoopi. Imagine, he sang the National Anthem for a professional baseball game. Don’t you love his confidence and spirit? His goal is to get a Grammy–and I think he will.

Keep Climbing and Singing: Onward and Upward
All my best,

Mary

What do you hear? See? Think? Want to discuss?

What did you think of Blake and Snoopi’s version of “Do you hear what I hear?” Do you know anything about DECtalk? or other programs to help people with disabilities talk/sing/dance/make beautiful art? I was struck how their work makes me listen and see differently, how it helps me see “goodness and light.” What about you? Do you know anyone who might also be interested in collaborating with Snoopi or Blake? Does their can-do spirit remind you of Aimee Mullins?

For anyone who buys gifts for a person with autism or a disability, here is a fun twist on the classic poem which shares some of the reasons it is so difficult to find the perfect gift.

Cindy Waeltermann, is the founder of AutismLink and gives us permission to reprint her poem on behalf of her two children who are adults with autism.

Autism Night Before Christmas

by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned…….

Thanks to Trish Doerrler, a parent of a child with autism, for sharing this poem on her blog In so many words.

Hope you all have a fantastic Holiday, with lots of precious moments.

Aaron’s Favorite Gifts

This year we are getting Aaron a tape/CD player because Aaron thinks listening to music is an active sport. He loves putting the tapes (yes, tapes) in and out. We can find tapes in used book stores. They are usually pretty cheap, but that is great because then when they only last a couple days, they can be replaced. The hardest part will be to get the staff to understand the batteries are rechargable and should not be thrown out.

Aaron also likes to lick and flip baseball cards. He especially likes the ones with cheerleaders:)

I wish we had a longer list. He really isn’t impressed with new shirts and underwear.

Keep Climbing: Onward and Upward.

Mary

Comments:

Which gifts work for your child? especially adults with autism or other disabilities? Are the gifts age-appropriate?

Here is one of our most popular posts. Relax and make an individualized ENJOYMENT plan for your best holiday ever.

Mary

Easy as I.E.P.

Mom’s I.E.P. for the Holidays: Individualized Enjoyment Plan

Want to enjoy the holidays?

Of Course.

Easy as I.E.P.

Don’t laugh. I.E.P.’s were developed because they are good planning tools. Some people are intimidated or challenged by the I.E.P. in Special Education. One way to demystify the I.E.P. process is to use it in our everyday lives. So, stick with me for a minute while we look at how this can work in real life.

Let’s use the Individualized Education Plan to create a holiday planning guide.

The first part is to create your Dream Plan of what you want. Then we plug in the basic parts of the I.E.P.: Evaluation, Annual Goals, Short term objectives, Related Services, Placement, and circle back to the Evaluation for the next I.E.P. for next year.

Dreaming of YOUR perfect holiday

Everyone’s perfect holiday looks different: Grandma’s turkey feast, or make that a roast goose, or Uncle Bob’s ham and sweet potatoes, or a vegetarian, or Kosher, or vegan, or gluten-free …

Everyone has different expectations, traditions, time and money constraints. So forget the Women’s magazines, forget what your Mother-in-law wants, forget what happens on the Food Channel and Martha Stewart show.

We don’t care about “Everybody.”

The beauty of the I.E.P. is it is individualized. It is for You. Not your mother, your children, your boss…YOU! This is YOUR moment, your freedom, just YOU–what do you want?

Action Step 1: Visualize a Dream Holiday

Take a deep breath and picture a smiling yourself surrounded by your favorite people, doing what you really want to do. Ahhhhh.

Are you skiing down a mountain? Are you sitting by the fireplace listening to Bing Crosby? or Lady Antebellum? ….

What would make this a joyous holiday for you–with just the right balance of work and relaxation?

What were the strengths and weaknesses of previous holidays?

Do you want to start any new “You” traditions, new family traditions?

Define your dream plan (see related post)

Feel empowered to do it YOUR WAY. This is your holiday gift to yourself. You deserve it!

Don’t you feel better already? This holiday is going to be the best.

Dream Plan:

1. Take a sheet of paper and fold it into four squares: Wants, Needs, Likes, and Dislikes.

2. Fill in the boxes based on YOUR Individualized choices.

If you are feeling pressure because others are trying to get you to do something you don’t want to do, be polite but tell them to make their own IEP. Empower yourself! I know this is hard for me and most Moms.

3. Circle your five top priorities and they will become your goals.

For example: Want live tree. Need family to be together for dinner. Loved shopping with Aunt Ruth. Hated the last minute rush….

One Priority goal: Need family to be together for dinner.

Making a decision is the first step. What do YOU want? What would bring YOU joy?

EVALUATION:

Since there is no standardized tool to measure the
holidays–no HFA (Holiday Fun Assessment) or HQ (Happiness Quotient)–we will create an informal evaluation tool based on ecological assessments.

GOALS:

–

LONG TERM GOAL I: To have a traditional, homemade turkey dinner with family members on Christmas Day.

Do we want to raise the turkey and grow the corn for the stuffing? Serve the strawberry preserves from your summer garden? Do we want to skip the preparation and order in? Or go out to eat? So many choices?

If we decide to keep this as one of our goals, then we must break down our long-term goal into measurable, observable steps.

Mom decides she wants to cook the Christmas dinner and eat at home.

SHORT TERM OBJECTIVES:

“Short term objectives are merely small steps that enable us to get from where we are now to where we want to be by a certain date.”

A. Mom will finalize the menu by December 10.

B. Mom will make the list and complete the shopping by December 15.

C. Mom will prepare the dinner by December 25.

Each of these short-term objectives can be “task analyzed” and broken down into smaller parts.

We know these are important steps to reaching our goal so they must be completed with 100% accuracy. (75% completion of the meal may leave some family members hungry.)

Goal Two:

LONG TERM GOAL II: To have the gifts wrapped and under the tree by December 24.

SHORT TERM OBJECTIVES:

A. Mom will purchase all supplies by December 10.
B. Mom will supervise the gift-wrapping by December 15.

Task Analysis example:

Mom will supervise:

1. Billy will cut the paper.

2. Dad will wrap and tape the gifts.

3. Susie will add the bow.

4. Tommy will place the presents under the tree.

Notice in the Task Analysis, family members with different skill levels can all partially participate.

RELATED SERVICES:

—“Developmental, corrective and other supportive services to enable you to reach your goals.”

To achieve Goal IC –“Mom will prepare the food by December 25”—Mom will need the following supportive services:

Consultant: Grandma has the expertise to bake and bring perfect pumpkin pies.

Consultant: Aunt Jane will come early to help in the kitchen.

Community Resource: We will purchase the local bakery’s famous dinner rolls.

PLACEMENT:

Now that we have written our IEP we must determine the least restrictive environment for accomplishing our goals.

We could cook and wrap the presents at Aunt Sara’s and bring
everything home, but to meet Mom’s goals on this particular IEP, her own home is the least restrictive environment.

Remember any IEP can be revised or modified at any time. For instance, if Paula Deen wants to invite my family for a holiday dinner, I would change these goals in one butterfat minute.

Happy Holidays

I hope using the I.E.P. process not only makes it easier to understand, but I hope it can be a tool for you to have a magical holiday season.

Well, what do you think?

1. Do you better understand the IEP process?
2. Would this process be useful for everyone?
3. Does anyone raise turkeys?

Keep Climbing: Onward and Upward
All my best,

Mary

Other posts you might enjoy:

Celebrating St. Nick and two special sons.

Balancing My child’s needs and my needs

Celebrating St. Nick and Two Special Sons

"The stockings were hung by the chimney with care, in hope that St. Nicholas soon would be there."

Family Traditions:

Because of our German heritage, St. Nicholas’ Feast day on Dec. 6th was the start of the Christmas season. The tradition of putting out our socks (or shoes) was always great fun.

Aaron, our son with the label of autism, and Tommy, our son with the label of normal are now 36 and 35 years old. Last post I wrote about how our holiday celebrations are evolving: St. Nick meets Disney Princesses.

Old Traditions

The first year we were married, my mother-in-law Jean, hand-made Christmas stockings for our mantle. Of course, we were living in a small apartment with no fireplace or mantle, but it began a family tradition. You know this was a long time ago because while Tom’s sock was a typical crew man-sock, mine was shaped like silk hose plus garter. (Do they even make those anymore?)

To personalize the stockings, Jean lovingly sewed small schoolhouses on both of our stockings because we were teachers, adding a felt wedding ring on mine and a felt set of golf clubs on Tom’s. When I was pregnant, she made an “Our Grandbaby” sock for Aaron who was going to be born in December. Later I store-bought some Christmas stockings for both my sons but glued and sewed some Christmasy trim on the socks.

Now a generation later, I captured our family’s own Norman Rockwell moment—Isabella pointing to the “Our Grandbaby” stocking on our mantle.

Making New Family Traditions

Lots of families put up Christmas stockings, some find stockings that are personalized with each person’s name, or hobbies, or interests like socks for dog lovers, Barbie dolls, sports fans, or ….

But, our family made the old tradition our own by adding a token of some special moment each year on St. Nick’s Feastday.

Adding a Memory a Year

Throughout each year, Tom and I look for small tokens and give them to each other on St. Nick’s Day.

Vacations and trips were easy. There were always ready-made patches, pins, buttons we could pick up at souvenir shops. Scouts, school events, sporting ribbons and awards also were small and could be easily attached to the socks. We even added some mementos inside the socks, like Tommy’s business cards for each new job and Aaron’s first pay check. Now the front, back and inside of the socks carry magic moments to remember.

Our socks have become treasured scrapbooks of our lives.

Tommy's Christmas Sock 35 Years

Aaron's Christmas Sock 36 Years

What do you think? Does this tradition meet the test of inclusion+ normalization? Are Aaron and Tommy’s socks alike? Age-appropriate? Do these socks also celebrate their individual gifts and interests?

You can see Aaron’s Trolley Bus pin from our trips to the Smokies, the pin from Carlsbad Bat Cave, his school bus and Lakota Pin, his prom key chain, his Boy Scout patch from Woodland Trails, a horse pin from Cincinnati Riding for the Handicapped, National Park patches where he hiked with our family…

Tommy has Boy Scout pins, school patches from the cross-country team, buttons of him looking fierce in his junior high wrestling uniform. Tommy also hiked the same easy trails in the National Parks but those patches were not the same accomplishment they were for Aaron. Tommy was proud of his week in Philmont and the more difficult mountain hikes on the Appalachian Trail with his dad…

So both Aaron and Tommy had hiking patches. The difference was the intensity, duration and difficulty of the trails.

Both were proud accomplishments.

Transition

Tommy’s wife, Ana, bought Christmas stockings for their first Christmas together. Each year I give them some token to add to their sock. This year, Ana became a United States Citizen. After the ceremony the Daughters of the American Revolution passed out little flag pins. I asked for an extra one, planning to add it to her sock.

Aaron just moved into his new house, I have stockings ready for his first house decorating party, he will get a house key on his sock.

And so the tradition continues:

“The stockings were hung by the chimney with care, in hope that St. Nicholas soon would be there.” (Night before Christmas)

Wishing you many happy memories this holiday season.

Keep Climbing: Onward and Upward

Best,
Mary

Comments

I hope you’ll share some of your family’s holiday celebrations. Is this an idea your family can adapt? Does your family celebrate St. Nick’s or have some unique tradition?

Other stories you might enjoy:

Tale of Two Brothers: Sibs of People with Disabilities

Circles of Life: Family Reunions

St. Nick and the Batman Socks

St. Nick and the Batman Socks

Last year, I shared my story about St. Nick and the Batman socks. I told you I would give the Batman socks to our granddaughter when she went to kindergarten.

Well, as you can see in the picture above, Isabella picked the Batman socks right off our tree, made a face…and a new family tradition began.

As we learn in early childhood and special education, we take our cues from our children, right? Use those “teachable moments.”

New St. Nick Traditions

I don’t know if Tommy and his family will decide to put Isabella’s worn socks on their Christmas tree, but I’ve been trying to figure out how to continue our St. Nick’s tradition of fun plus lessons in diversity, inclusion and building community.

I’m not sure it will work, because two year olds are pretty young to understand sharing, but I’m thinking of giving Isabella two sets of Disney Princess socks for St. Nick’s.

One for her, and one to share.

I don’t want this to be a “charity” or “pity” model, but rather a gift of joy. I have read research which says giving is the best present you can give yourself.

Charity is tricky. I want Isabella to learn that she is giving a gift. It is something she would like, it is pretty and new (or gently worn), she can try to envision what the new little girl will feel like when she gets it.

If all goes well, this can be our new tradition.

Who doesn’t need a new pair of socks?

And even though the Disney Princesses are all young and beautiful, they are from different cultures and had to overcome some diversity, right?

Hopefully, the story of “St. Nick and the Batman Socks” will become a cherished tradition…and will continue to teach about diversity, community building and inclusion. And hopefully, our precious little Isabella will also learn about giving and sharing with others.

Comments:

Want to take bets? How will this little experiement work? Do you have any holiday traditions that promote community building? Do Disney Princesses rock?

Keep Climbing: Onward and Upward

All the best, Mary

Check out these other posts about the Holidays:

Grandma Gets a Thong

What is Charity and Love?

Thanksgiving: A song about autism

Kill the Turkeys: Life lessons for people with disabilities.

Thanksgiving: Inclusion and Interdependence

We have a house!

Amazing News: A House and Roommate| Part 12

Miracles Do Happen:

Last week, a non-profit agency bought a house near our home. They will accept Aaron’s HUD housing choice rent voucher.

Today, we met with a young man and his mother and we think we found a roommate match.

Miracle Triangle:
House/HUD–Roommate–Residential Staff

For those of you who have been following our journey to move Aaron, our son with the label of autism, home to our county, this is Part 12. You know how complex and difficult this has been. Here is the link to Part 11: 1st miracle| Aaron needs a Roommate| Part 11.

Even with the two miracles, don’t breathe yet. But we now have two pieces of the triangle in place.

The third part of our miracle triangle is great staff. I’ve talked about the critical importance of staff in Caregivers: Part 1, 2, 3

But as Scarlett O’Hara says, “I’ll think about that tomorrow.”

Here are the details in two emails: one from early this morning (2:30 AM—mothers never sleep); the second is after our dinner meeting (9:00 PM—mothers put in long days).

Task Analysis for Monday Morning:

From: Mary E. Ulrich [mailto:marye.ulrich1@gmail.com]
Sent: Monday, September 26, 2011 2:28 AM
To: Everyone I could think of who might be part of this move
Subject: Aaron’s house

Hi Everyone,

I met with the director of the non-profit on Friday. He said they closed on the new house last Monday and so we can begin the countdown to a move-in date of Nov. 1. Yea, Yea!

Thanks to the Non-Profit and the County Board of DD for making this new resource available to Aaron and our community.

So now there is much to do to be ready by Nov. 1st.

HUD

The director of the non-profit is finalizing the paperwork to become a HUD landlord in W. County. There will need to be an inspection and he is negotiating the rent…. As soon as we get Aaron’s roommate, we will be applying for three people and a 3 bedroom subsidy (Aaron, roommate and caregiver.) This is what Aaron has had in our past County for the last decade, so I think this should be pretty cut and dry. It is an accommodation under ADA, but is different than the rules for HUD’s definition of “caregiver.”

We have received HUD extensions until Oct. 31st. It has been a lot of running around between counties, but Debbie and Wendy have both been wonderful caring professionals. Thank you for helping me figure out the system.

Notices

I need to give notice to everyone in our current county and the current provider by Oct. 1st, which is fast approaching.

I’ve given the notice about moving to Aaron’s current landlord.

This will not come fast enough. Aaron had another “unusual incident” last week where he was not groomed for his day program. (The food he got in his hair on Monday was still there on Wednesday—the staff felt he had not had his hair washed in two days and it was dirty and grimy.) Also, Aaron is running out of transportation money to his day program.) Tom and I are taking Aaron up on Monday mornings, and usually picking him up one afternoon a week.

House Remodeling

The director of the non-profit says they closed on the house last week and will begin the remodeling shortly. They are starting with some tree trimming because of the possible danger and then will refinish the floors in the Living Room, Dining Room and move on to the bathrooms. If everything works out well with HUD and we get the caregiver’s designation for the third bedroom then there may be enough rent money to justify new windows (the current windows are casement windows—inefficient and BAD). They are reluctant to begin the bathrooms until we know who the second roommate will be. This makes sense if we want to make accommodations which are specific to the person needing the bathroom.

I think this is a great way to begin because we will want to show the community we will be great neighbors and take care of the house before the rumors begin that two men with intellectual disabilities are moving in. This is what worked on Aaron’s current residence and I have too many memories of Stetennius, Five Mile and other hearings from worried neighbors. It is a mature neighborhood, I don’t expect any problems, but we want to make a good first impression.

Tom and I will be planting some mums and have a couple inexpensive porch chairs to make the place look lived in. The house has been vacant for a long time so a few improvements should impress the neighbors.

Potential Roommate

I am hoping to hear from the parent of the potential roommate today, and then can set up some visits. This is the next big step.

Then, I understand from the new county board, we will finally get a case manager.

Transition for Aaron

We have been driving Aaron by the house and telling him it is his new home, but I can’t imagine he understands what we are talking about. I’m worried he will miss his roommate of the past 13 years and am sure he will be confused. I want to start some visits to the house as soon as possible. The more familiar he is, the easier the transition.

I’m hoping he will get to have a couple meetings with the new roommate and new staff as soon as possible.

Furnishing House

We also need to figure out how to furnish the house. I have begun to take donations from relatives. We probably have about $1000 set aside.

Tom and I furnished Aaron’s first two residences. We are told that if the furnishings belong to Aaron he can take them with him, but I am uncomfortable just taking the silverware out of the drawer and telling them, “Sorry, this belongs to Aaron.” We have enough problems with the current staff as it is and we don’t want to cause problems for Aaron’s current roommate. But, it is expensive to start a new house from scratch.

My family will be having a shower to donate items sometimes this month. I will have to coordinate with the director of the non-profit when we can get a key and get into the house and it’s not a Bengal’s game (if there are any Bengal fans left in Cincinnati by then).

I’m hoping we can set a corner of the garage or one bedroom to begin collecting items.

I began with a couple boxes in Aaron’s current residence and the staff (without permission) gave them away. “What would you do? Case of trash vs. treasure”. (I’m still VERY upset about this. Just add it to the list of why I want to get away from them ASAP.)

New Agency

Next week I will begin interviewing residential providers. They will need to hire and train staff by Nov. 1. We have met 3 different providers as we visited the 3 potential placements for Aaron. One company impressed us because it was a local company in Mason, but we are open to suggestions. Please email me ASAP. We are well aware that just because a company was good last month, doesn’t make it good this month. Having caring staff will be the second most important variable, after a good roommate.

Well, we have a busy week ahead. Please say a prayer we sell our condo, it is a huge strain on us. We listed it with another agent last week. We have begun to move some of our things into our new condo.

I’m hoping by Christmas we can look at both Aaron and us in our new homes and know we are in a better places, but GEEZ, it’s going to be an action packed couple of months.

Thanks to everyone for helping make this happen for Aaron. Maybe the Bengals could learn from all our teamwork

Any questions please let me know. Have a great week. Mary

About 1:00 PM, the mother of a young man who might be a prospective roommate called on the phone. That went well so we picked up Aaron at his day program and all met for dinner in a local restaurant.

Email to same group at 9PM.

Tom and I always felt one of the most important steps was finding a good roommate for Aaron. We think we have found a good match.

Aaron, Tom and I had dinner with Jim and his mother, and it went very well, so we would like to move forward.

Jim was very friendly. He is the kind of person that hugs everyone and is best friends with everyone in a couple minutes. He has a devoted mom. Aaron kept looking at Jim. I wish he could speak and tell us his thoughts, but he seemed happy. Jim likes to swim and go to King’s Island—both things that Aaron liked to do in the past. Hopefully, they will be able to do many activities in the community.

By Providence, or some divine plan, or dumb luck…Tom and Jim’s mother actually taught at the same school together and used to talk about their kids at lunch. Pretty amazing, eh?

So, if everything works out—drumroll please– Aaron and Jim will be roommates.

HUD

Jim’s mother is going to call Wendy at the HUD office tomorrow and see what we need to do to get Jim on Aaron’s list. So we will have 3 bedrooms and Aaron, Jim and the caregiver will make three. So, hurrah hurrah.

Also, yesterday the non-profit started painting rooms and beginning the process to get the house HUD approved. So we are really moving forward. It is hard to believe—this is going to happen.

Medicaid Waiver

Aaron and Jim both already have Medicaid Waivers at appropriate levels. So we can begin the transfer of Aaron’s waiver to our new county and start interviewing residential providers.

Finding a good staff will make our miracle triangle complete: (House/HUD—roommate—staff).

Furnishings

My sister Janet, visiting from Kansas, had a friend donate our first items for the house. The director of the non-profit allowed us to begin to put them in the garage.
The painters were there to let us in….
Today went so well, I think I’ll go buy some lottery tickets.

Thanks to everyone who is helping us climb our mountain and move forward. It takes a village….

Mary

Keep Climbing: Onward and Upward
All my best,

Mary

Comments:

Hope you’ll share your thoughts and experiences. I’m happy and exhausted and I know we are only about half-way on the move-in journey. Whew! Now on to making a task analysis for tomorrow. Whew! Whew!

Tom, Tommy, Aaron and Mary

Today I will be interviewed on The Inclusive Class on Special Needs Talk Radio on the topic: Successful Inclusion.

This is the third interview in their series on Inclusion. The interview is about 20 minutes long. I hope you will leave comments here, talk to your friends and use your social media to spread the word on Twitter, Facebook, Google Plus, DIGG….

My Brief Biography:

Like many people, I began my journey into Disability World when Aaron, my oldest son, received his first label of autism and intellectual disability because he didn’t reach the developmental milestones.

Fortunately, Aaron was born right as PL 94-142 (The Education of All Handicapped Children Act—the precursor of IDEA) was passed. He and Neill Roncker were the first students with severe disabilities to go to Cincinnati Public Schools. Neill’s case (Roncker v. Walter) went all the way to the Federal Supreme Court, ours was resolved locally because the school district didn’t want a class action lawsuit.

I was fortunate to learn about inclusion from the people at TASH (Equity, Opportunity and Inclusion for People with Disabilities–formerly The Association for Persons with Severe Handicaps).

Most of my life was spent as a mom and advocate. When Aaron moved into his own house, I went back to school to get my masters and doctorate degrees in special education at the age of 50. I taught at Miami University and am still fighting the good fight for adult inclusive services for my son who is now 36 years old.

We’ve had some success stories that warm our hearts, and we work every day to make Aaron’s life more inclusive. We are currently working to move Aaron closer to our home.

Questions:

1. Roncker v. Walters was the first court case under the Education of All Handicapped Children Act to go to the Federal Supreme Court about the Least Restrictive Environment. What effect did it have on what we now call inclusion?

Neill Roncker and my son Aaron both lived in Cincinnati Public School District. Neill was a year older than Aaron.

In the 70s, Ohio had a policy that children with IQs below 50 were automatically excluded from the public schools and sent to the segregated schools for children with severe intellectual disabilities. It took several years, but finally the Federal Supreme Court ruled Neill could go to public schools and services must be PORTABLE.

“In a case where the segregated facility is considered superior, the court should determine whether the services which make that placement superior could be feasibly provided in a non-segregated setting. If they can, the placement in the segregated school would be inappropriate under the Act” (Roncker v. Walters 700F.2d 1058 6th Circuit).

For instance: if the segregated school provided speech therapy, that same speech therapy could be portable and provided in a public school.

Since Roncker there have been many cases on “mainstreaming,” “least restrictive environment” and “inclusion.”

The court sometimes makes conflicting decisions, but the bottom line is the decision must be made on an individual basis (thus the reason for the conflicting decisions) and must ask the question: “Can the services in the segregated school/class be provided in a general education school/class?”

Remember in the 70s-80s, we were just trying to get our children to be considered: “persons”; “capable of learning”; “potential employees” and to be allowed to go in the door of the public schools.

The term “inclusion” had not been invented yet.

The Roncker case was important for many reasons: it showed the congressional intent of education in the least restrictive environment; the rights of parents to go due process; and the courts responsibility to hear the evidence in education cases as well as consider class action lawsuits. The question of costs was also to be a consideration. These were critical milestones which affected future cases like Daniel R. R., Timothy W. and many other cases.

To avoid a “class action” case, Cincinnati Public Schools settled on Aaron’s case after we won our first due process hearing. Aaron was allowed to go to a public school. Long story, but my husband was a teacher in Cincinnati Public and because of harassment for Aaron and our family, we moved to another school district a year after we won the right to go to public school.

2. Can you share a couple of those Aaron success stories?

Our family researched the 5 counties in our area which included 3 states. We found one school district where both our children could go to the same school. After our three year battle with our school district and hundreds of confrontations with angry parents and teachers, our first success story was on Aaron and Tommy’s first day in our new district.

The yellow school bus pulled up in front of our new house and both our boys got on the same bus to go to the same school. No bands playing, no angry protestors, just four neighborhood kids waiting on the corner.

One young man who was about 9 years old, who had known Aaron for all of ten minutes, reached out his hand to help Aaron get up the steps of the bus. No one asked him–no one gave him an inservice or lecture on attitudes toward people with disabilities–he just instinctively gave Aaron his hand to boost him up.

That was when I knew Aaron was going to be fine. A helping hand–isn’t that all we were ever asking for?

If you want to see a picture of this moment, click on the historical slide show from the Minnesota DD Planning Council’s Parallels in Time 2. Aaron getting on bus his first day in an inclusive school.

Aaron and Tommy attended school together for almost their entire educational experience. Tommy is one of the most sensitive caring people I know and is now a radio frequency engineer with Sprint. They shared many activities together.

Aaron participated in inclusive social, emotional, some academic and after-school activities: Boy Scouts, the prom, the junior high dance, track/cross country, chorus, the environmental club, Friendship club, bowling, work study/vocational job club, and many other school activities. On my blog, I wrote about the graduation ceremony (link below).

If you want more information about A Place to Learn, check out the Parallels in Time 2. It is wonderful.

3. When you were teaching the “inclusion” courses at the university, what did the education students think about inclusion?

It was interesting. Most of the university students who went to school with people with severe intellectual and developmental disabilities couldn’t understand what the big deal was. The students who came from private schools where there was no diversity, were confused and uncertain how inclusion could work. I’m hoping my class made a difference, I’m hoping the next generation of students will have the learning opportunity to be voters, friends, neighbors, co-workers and bus riders with others who are different from them. As our world becomes more diverse, this will be a critical life lesson.

4. Some school districts call a school an “inclusion” school and all the students in the school have IEPs. Does that meet the definition of inclusion?

NO! Some school districts just make up their own definitions. Other districts “dump” kids in classes with no support services. Last year I went to supervise student teachers in an “inclusion” school and was shocked that everyone in the school was on an IEP. Check out Michael Giangreco’s article and terrific comics: “Moving Toward Inclusion.”

5. Why do you think inclusion is a civil rights issue?

The reason we have the term inclusion is because we have had exclusion, segregation and inequality. Senator Lowell Weicker said, “As a society we have treated people with disabiliteis as inferiors and made them unwelcome…”

If you have any doubt, check out Parallels in Time I ” a website on the history of people with disabilities.

In Brown v. Board of Education (1954) “separate is inherently unequal” says it all.

Check out “What is Inclusion?” on my blog ClimbingEveryMountain.com and see Aaron and Tommy in their graduation pictures.

Again, here is the link for the interview: The Inclusive Class: Successful Inclusion with Mary E. Ulrich

Mary

Comments:

Share some of your inclusion stories and let
us know what you are thinking. Will you listen to other interviews on The Inclusive Class? I’ll pass on your ideas to Nicole and Terri.

Here are their websites:

Nicole’s site:

http://inclusiveclass.blogspot.com/
Terri:

http://specialchildren.about.com/

Aaron on exercise bike

Aaron

"Who are you?"

Roommate Needed in Mason, Ohio

Aaron is a great guy who likes other people. He is looking for a roommate.

Aaron is 36 years old. He attended Lakota Schools and is currently in the Goodwill/Easter Seals Day Program in Lebanon.

Aaron likes to go for walks, ride the exercise bike and swim at the community center, go out to eat, listen to music, look at books, baseball cards and get involved in other inclusive activities in the community.

He loves to go on vacations with his family and ride the trolley bus in Gatlinburg. He likes his Sunday visits with his family and playing with his niece.

Aaron doesn’t talk with many words, but he finds ways of telling everyone what he wants. He repeats phrases and is noisy which could bother some people.

The ranch house is in Mason, near a local park. It is currently being renovated and if needed, could be wheelchair accessible. The home is owned and maintained by the Housing Resource Group of Resident Home, so this will be a permanent residence. Aaron has lived in a house managed by this non-profit for over 11 years and we feel they do a great job.

Aaron has a level 5 Medicaid Waiver which will help pay for the 24/7 staff. He needs a roommate who is also on a waiver or private pay. We are working with our Warren County Board of Developmental Disabilities.

Anyone who has lived with other people knows the importance of finding a good roommate match. Aaron would like a new friend as well as someone who could be part of his extended family.

He is hoping to move in by October/November.

If you know of someone who might be interested, please call me at 513-336-8271.

This is the 11th post about our attempt to bring our son with the label of autism home to the county where we live. We are making progress, and scratching off items on our task analysis, but it is exhausting and full of ups and downs. If you want to review some of these posts, they are listed in the bottom of the left side column.

Comments:

It is difficult to describe Aaron. He is loving and wonderful, but a prospective roommate also needs to know Aaron is noisy and that might be an issue for some people with sensitivity to sounds. So, how can I give Aaron respect and dignity and yet be honest.

Aaron has had the same roommate for 13 years. He and Jack are good friends and care about each other. Jack’s family isn’t interested in having him move to our county. Leaving him will be one of the hardest parts about moving. We have endured a lot of “issues” in the past few years, just because we didn’t want to split up Aaron and Jack.

We can only hope we will find someone like Jack, and as you know, everyone is unique. We ask your prayers.

Any suggestions greatly appreciated.

Keep Climbing: Onward and Upward

Mary

photo credit: Mini D

The Disability Shuffle: Two steps forward, one step back. OR, One step forward, two steps back…. The frantic drumming of time passing pounds in your ears as you shuffle and twist and beg others to listen and join in your dance of survival. “Can I keep up or will I fall and break my neck?”

As you straddle the wall between Normal and Disability Worlds, you wonder, “I’m dancing as fast as I can, but is it to my own song, or am I merely a puppet dancing on the professional’s strings?”

This is the 10th post about our attempt to bring our son with the label of autism home to the county where we live. Over the course of a year, this is about the 500th action step we have taken to try and make this happen.

Today I have good news and bad news.

GOOD NEWS

One of the local non-profits is willing to purchase a house in the city where we live.

According to the policies of HUD, parents and family members are forbidden to own the houses.

This non-profit has been around for a long time and will likely be solvent. Aaron has lived and rented one of their houses in B County for the last 13 years. They do a good job.

They are willing to get the house HUD approved and Aaron would be able to use his “housing choice voucher” to become the head of household and rent from them. This voucher is also good for any roommate Aaron would pick.

Aaron could live in this house for the rest of his life. The non-profit said they would let us be involved in the process of finding a home. It could be close to where we live, so we could stay active in Aaron’s life and watch over his care and the unpredictable staff. Since we would treat this home like our own, we pledge we would be good stewards.

Finding, Purchasing, Renovating, Furnishing and moving in will take time. And we are already on our second 30 day extension in the HUD timeline. Ouch, only 60 more days.

Since Aaron would use his HUD voucher for himself and another person, this would be a long-term solution which would help costs in the new county.

HUD HOUSING PROBLEM SOLVED. Right?

With creative problem solving and resources in Disability World, we could meet the criteria set up in HUD Regular World. (Another time we can talk about how HUD Regular world, might be another parallel universe from Normal World.)

EXCEPT

The County Board of DD must give their permission for the non-profit to come into the county and be willing to work with them. I don’t think this is any law, just good business practice.

BAD NEWS

Each county sets up their own non-profit to rent the houses to people with disabilities.

Some of these use HUD Section 8 rent vouchers,

Others just have the people pay the full rent, and

Some have their rent subsidized local county funds.

Each County is Different.

The non-profit housing agency in B County is pretty independent of the board.

The non-profit in W County is run from inside the county offices.

Same mission–to provide affordable accessible housing–totally different structures.

B County uses many HUD vouchers; W County uses rent subsidies from local funds.

Aaron and the people with disabilities I am talking about are among the poorest and most vulnerable of Americans. They have labels of physical and intellectual disabilities, autism, developmental disabilities that started before age 22. Many have no family or others to help them at all. Each county tries to keep the rent at 1/3 of the person’s income or social security check–which is around $120.

Everyone knows there aren’t many places to rent for $120. Even with a second roommate that is only $240. If you add the special accessibility needs—well, you get the idea. People with disabilities are going to need some sort of rent subsidy to live in any decent house or apartment.

Our new county’s housing non-profit does not have the funds to buy any property in our city (the largest one in the county). They have most of their property in the county seat, which is centrally located to the county, but not to the population. I wrote about the one property they do have in our city in Part 8| Roommate hunt continues Medicaid Waiver Style
and Part 9| Should I rent a billboard? So, bottom line.

Our new county is “thinking” about accepting the offer but it has to go up the food chain. It is a bureaucracy and even if it is a good bureaucracy, there are staff who go on vacation, go to conferences, have babies, use personal days, and have full agenda’s that don’t include Aaron Ulrich, someone who currently isn’t even in their county. YET?

So we wait. And wait. And pray that we will be able to meet the timeline. We keep dancing on the wall.

And maybe they are hoping if they keep us dancing long enough, we will wear out, and exhausted we will give up and stay where we are. Not bother them in this new county.

But Tom and I live in W County. Have for 12 years and plan on being here for the rest of our lives.

Meanwhile…

photo credit: 2create

HOUSE OF CARDS

Friday we got a notice that the Director of Aaron’s Day program resigned suddenly. We LOVED this director. She put her heart and soul into developing this new day program in our new county.

So, Aaron loses his good friend and a competent professional who loved him.

As it looks like we might be solving one problem and be able to add one card to the residential domain of Aaron’s life (God willing and the creek don’t rise) another card in the vocational domain collapses.

So be it in the life of a family of people with disabilities. And when this HUD Housing Card is in place, then we get to continue the search for a roommate who has a Medicaid Waiver and who would want to live with Aaron.

Hey, wonder when families will get a break and be able to go on vacations, take personal days….?

One step forward, two steps back… The Disability Shuffle continues.

Comments:

Does this make sense? Does your county have a non-profit board for housing? Does your family member have a HUD or other rent subsidy? If so, who owns the house? Today I’m going to concentrate on the hopeful promise of the non-profit and pray it works. What hopeful promise are you praying for?

Keep Climbing: Onward and Upward.
All my best,

Mary