Archive for the ‘Ulrich Family’ Category

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: shapeshift

HUD Tips for Parents and Guardians of People with Disabilities| Part 1

Housing for Urban Development (HUD.gov) has a “housing choice voucher program” (HCV) for people with disabilities and other low income families. They describe it as a three way partnership between HUD, the owner and the family.

Disclaimer: I am NOT an expert on HUD. I am sharing my personal experience to the best of my ability. Please check with your local HUD.gov office.

Over ten years ago, I learned about the HUD rent vouchers from my brother Steve, and the actual process was like trying to win a radio show contest: There was an open enrollment period on one day, call between 1:00 and 3:00 pm and the first 100 callers would get application forms. Another open enrollment period may or may not happen again.

On that particular day, I went to the County Board of Developmental Disabilities and using all five phone lines, we dialed in as fast as we could. Fortunately we “won” the chance to get an application. Because we were the first with intellectual disabilities in our area (of course) it took us a year to sort out all the details and paperwork for two non-married people to be considered a “family” with common housekeeping. Thanks to other pioneers like us, the Fair Housing Act, ADA, and other federal legislation I think this is easier now.

Supplemental Rent Subsidy

Aaron, our son with the label of autism, and his housemate only pay 1/3 of their income for rent, which is under $100 each and a rent supplement is paid directly to the landlord by HUD. It is based on the “Fair Market Rent” (FMR) and varies from city to city.

Aaron’s voucher allows him to rent in a neighborhood, not a segregated housing project. It is probably not the highest rent a landlord could get, but it offers a long term renter and a guarantee check each month. Most of the available HUD houses are in less expensive neighborhoods.

A non-profit board became our landlord. They even got a grant from the state for the $10,000 down payment for the purchase of the house. I understand there are some programs to help make the houses accessible under ADA, if it is necessary. We will be looking into that in the future.

Aaron was named the “Head of Household” which means he can take the voucher with him. It is “portable” and he could move it to another county or even state. It is my understanding, not all waivers are “portable.”

Additional Information

There is only one voucher for each house. I always thought this was a gift Aaron gave to his housemate.

Systems Change

I also am proud that our pioneer efforts have given many more people with disabilities and their families the opportunity to live in neighborhoods. My advocacy efforts at this “system change” have helped others. In our county, now most people with disabilities are either on HUD rent subsidies, or on their waiting lists.

House of Cards

I’ve written about some of our experiences and the multiple agencies being like a House of Cards 1, House of Cards 2, House of Cards 3.

I like to think of myself as a “glass half full” person, but when the agency which was providing residential support went bankrupt, I knew it was time for a fresh start to recover from the abuse and neglect we had dealt with these past ten years. More in the next article.

Comments

Remember there are no “right or wrong” answers.

Please share your thoughts. Do you have any experience with HUD? Any tips for housing for people with disabilities? Have you ever just thrown in the towel and started over?

Keep Climbing: Onward and Upward,

Mary

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:

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,

Mary

Related Articles:

Home: More than a Place

Caregivers Part 1

Caregivers Part 2

Caregivers Part 3

There is no spoon| Disability Style

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,

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

Aaron watching Tommy play Nintendo

Summer Activities| A Mother’s Hope for Her Sons with and without disabilities

NOTE: This is when Tommy was 13 and Aaron 14 years old.

Is summer different for kids with and without disabilities?

This summer Tommy, my 13 year old son, …

• Went to 2 weeks of Boy Scout camp, an experience which included a hike on the Appalachian Trail.

• Had to choose between participating in baseball or soccer. In August, however, he began training for the school cross-country team.

• Was active in a neighborhood network of five boys who decided to start a Nintendo Gaming Exchange Club. His friends called him the minute he arrived home from activities, played games until supper.

* Was invited to stay overnight with a friend or cousin.

• Had a season’s pass to a nearby amusement park, and because he can use public transportation independently, spent at least one day there each week with friends.

The days of summer flew by for Tommy. He had individual activities with friends, but also family activities which included a camping vacation and travel to a National Park. His major frustrations were either the lack of time for pursuing all of his interests, or his Mom’s suggesting he do something “dumb” like reading a book or practicing his clarinet.

Our Family Camping Trip

Tommy’s brother, Aaron, age 14.

Aaron went to two weeks of special camp this summer.

Aaron’s major summer/weekend/vacation activity is watching Tommy play baseball, play Nintendo games…and riding to drop Tommy and his friends off.

Aaron also has a pass to the amusement park, but can only go with an adult (who so far is his mother).

Aaron spends every morning saying, “bus, bus…ready, set, go.” When the school bus doesn’t come, he sometimes licks on the front window, bites his hands and puts on his coat and backpack. He can’t figure out why his routine is different.

Aaron also can’t figure out why we spend all winter telling him to keep the front door shut, and all summer telling him to keep the front door open (but that’s another story.) *smile*

Aaron was on the waiting list for a short Easter Seals sponsored program in August, the only other community recreation opportunity available to him in our county.

What’s the Difference?

As I contrast the lives of my two boys, I can’t help thinking…

• …perhaps I wouldn’t feel Aaron’s isolation and lack of contact with any friends or same-age peers if Tommy had fewer friends.

• …perhaps I wouldn’t worry about Aaron’s behaviors, physical condition, weight and stamina if he were occasionally an active participant, rather than always an observer.

• …perhaps the hours and hours of inaction would not occur if Aaron had better skills or could entertain himself.

• …perhaps our family will adjust eventually to the sadness (and stress) we feel knowing Aaron’s only opportunities come from mom, dad or brother…and realizing it may always be that way.

* …perhaps we would feel so trapped if we could get respite regularly.

* …perhaps we’ll become accustomed to wearing a key around our necks so that the door can be locked with a deadbolt every time someone goes out or comes in (otherwise Aaron will run into the street or enter neighbors’ homes).

* …perhaps we’ll resign ourselves to our community’s “special” camps and “special” recreation programs, which effectively exclude Aaron from almost everything that is typical, regular, easily available and low cost. Perhaps hope will sustain us that someday a “community support” agency professional from somewhere, anywhere, could adapt, modify and begin to open community activities for Aaron and others.

* …perhaps our prayer will be answered that some child around Aaron’s age will care enough to help him join a circle of friends. Just once, even once.

* …perhaps/…oh perhaps…some wonderful person will believe that a community is more that a group of houses, businesses and people. Agency professionals must become bridge builders in the community. Families in which a child has a disability need the same support regular families have.

Summary: Separate is inherently Unequal.

The tragedy of having a child with a disability has nothing to do with a syndrome, impairment or disease. Words such as autism, CP, and intellectual disabilities are just descriptors the same way hair color, height, race, sex and personality are descriptors. Children don’t start out life knowing they are different. The tragedy is the reaction of families, neighbors and society, which emphasize differences.

The conflict for people with disabilities and for their families comes when the community limits opportunities, segregates and restricts individuals’ choices (e.g. Handicap swim is Tuesday; 1:30-2:30 p.m. and General swim is Monday to Friday 8:00–5:00).

It doesn’t matter that the limiting of opportunities appears, to have a good rationale or charitable intentions. Segregation limits freedom, limits choices, and limits development. “Special” means segregated.

Our Olympic Moment of Inclusion

One hot July day last summer, Tommy and his friends stopped by our house to make some peanut butter and jelly sandwiches for a picnic.

Unexpectedly, one of the boys asked if Aaron wanted to come along.

Five minutes later, all the kids were laughing, talking and riding their bikes to the park. One red-haired kid named Aaron was riding on a bike in tandem.

In about one-half hour the picnic ended and they brought Aaron back; that was the highlight of Aaron’s whole summer.

That moment for Aaron was sort of like the experience of a serious ice skater. Olympic gymnast, actor, or musician who practices day after day hoping to “bring it all together” for one magic performance or “big break” It was a “victory” –a spontaneous, normalized recreation experience, without his mom! Ahhh (smile-sigh). And now…back to work. But, perhaps, just perhaps…those wonderful, typical neighborhood kids will grow up more fully with the vision for and the experi3nce of community integration and freedom. They are the next generation of soccer coaches, swim instructors, church/synagogue group and scout learners.

The change of inclusion has begun.

Related Stories: (Click on title)

On the last day of Junior High School.

Dream Plan for Aaron–14 yrs old (Part 2).

America the Beautiful: A Family Vacation Plus

Keep Climbing: Onward and Upward

Mary

Comment:

What were your summer vacations like? Would they have been different if you had a label of autism or disability? If you were a parent of a child with a disability what would you be thinking? dreaming? Are summers different for kids with and without disabilities? Can you think of anything you could do to help?

Aaron, Tommy and Cross Country Team

My last post Teachers| Inclusion or Segregation started an interesting discussion. It reminded me of the letter I wrote to the Principal of Hopewell Junior School:

Letter to Principal on Last Day of Jr. High School

June 6, 1990

Principal, Hopewell Junior School
Lakota School District
West Chester, Ohio

Dear Dr. Taylor,

Recently my nephew, Robert, started laughing hysterically when I mentioned his cousin; Aaron was going to be on the school cross-country team. “What’s Aaron going to do? Bite and push all the kids at the starting line so he can win?”

I was deeply hurt but tried to explain it wasn’t all about the winning but the trying that was important. Robert was shocked! “But why would you even try if you knew you couldn’t win?”

Different Kinds of Winners and Losers

I explained there were different kinds of “winning.” Aaron has autism but he also has the need for belonging to a group and regular exercise. Robert stared blank-faced, and after several more minutes I changed the subject. To this gifted 14 year old, who has above-average good looks, athletic ability and intelligence, this made no sense. Sigh.

Robert, Tommy (Aaron’s brother) and their peers are the people on whom Aaron will always be dependent. They are the next generation of parents, professionals, neighbors and…coaches.

The experiences and value systems they are developing in school, in the community, on the cross country teams–right this minute—will directly affecting Aaron’s future.

Robert has never gone to public school, run on an inclusive cross-country team or been friends with people with physical and intellectual challenges. Obviously, even his experiences with his cousin have made little impact. I think that is a deficit in his education. It will impact his future as a member of his family and community. It’s not a visible “D” on his report card, but it is an invisible “deficit” and loss in his life.

Who are the Winners and Losers?

How do you teach that the person who comes in first is not always the biggest winner? Can children learn it takes courage for not just children with challenges, but for all the boys and girls who finish near the end?

WINNERS are sometime those who RISK losing…being laughed at…coming in last.

Learning and Teaching Values

Each nation decides what is normal, average and gifted. They decide who are the winners and the losers.

Recently, we’ve been stunned by news accounts which demonstrate how the values in Iran, China, and Russia are different from our own. We have also witnessed incredible changes in philosophy, public opinion and policy. Values are fluid, changing and dependent on multiple factors.

Shaping those values and rights is something we do every day, consciously, or unconsciously. Sometimes value changes are dramatic like the Berlin Wall coming down–winners. Sometimes value changes are dramatic like Tiananmen Square-winners/losers depending on your point of reference.

The rights of citizens are gifts from a nation to their citizens. These rights and freedoms cannot be taken for granted.

The tragedy of having a child with a disability has nothing to do with the child, a syndrome, disease or label. The tragedy comes from the struggle with people in your family, community, country who decide if they will accept and support your family or rejected and isolate you.

Whether the differences are overlooked or emphasized. Whether the winners are only the ones who come in first.

“But Wait until Junior High”

When we went to court in 1979 (Cincinnati Public Schools) to allow Aaron to go to the public school, the doomsayers predicted, “MAYBE it would work in elementary school…But wait until Junior High!”

The teachers care only about academics, the sports are so competitive, the kids are so cruel–during lunch they will put drugs in your child’s milk”

They hatefully wanted to frighten us into accepting the segregated school and a segregated life.

Last Day of Junior School

Today is our last day at Hopewell Junior School and happily those predictions are laughable. Thanks to the vision and caring of the administration, staff, teachers–especially Miss Linda Lee–and the other students in the school Aaron and his classmates have had a great experience.

They are the first class of people with significant disabilities who have been able to attend a regular public school. It has been a new experience for everyone and it has been a success.

Aaron has had many opportunities for learning functional skills which will help him live, work and participate in the community. But more importantly, he has had opportunities to be “included as a regular student.”

There were some who wondered why a kid, who can hardly talk, much less sing, would practice and perform on stage with the school chorus?

Why someone who has severe balance and flexibility problems would try to participate on the cross-county and track team?

They wonder if it be would have been safer if Aaron rode the “handicapped bus” with an extra aide, instead of the regular bus with his brother?

They will never understand why we hate Special Olympics?

These parents, students and community members can’t figure out what could Aaron possibly get out of an assembly, or six minutes in regular homeroom?

The answer to most of these questions then and now is really WE Don’t KNOW!

The schools are changing the future

Aaron has gifts, strengths and talents and when given opportunities for learning–determination and pride. We do have observations.

Each time a schoolmate says, “Hi” and forces Aaron to give eye contact, each time a teammate said, “Go Aaron, you can make it!” or gives him a high 5–it is a victory.

Each time they see Aaron make it over a creek or down a hill we celebrate.

Every time they see him complete his vocational job stacking juice cartons in the lunchroom, sorting the silverware, filling the pop machines–it is a value enhancing experience. Aaron can learn to do jobs, that if he didn’t do them, someone else would.

This year Aaron’s picture is in the yearbook next to his brother’s. He and Tommy’s picture is in also with the athletes for Cross Country and Track. A First!

A general education high school student cared enough to help Aaron participate in a bowling league. And then, he took him to the Eighth Grade Dance whose theme was “That’s What Friends are For.” A First!

Aaron’ name (granted it was a name stamp) was on the class t-shirt. A First!

Aaron got a school letter in cross country and track, including being in the team picture. A First!

Aaron got his first paycheck from his vocational training site, Grote bakery, allowing him to become a taxpayer. A jump-up-and-down first!

A whole lot of Learning

To me, these shifts in school philosophy, values and focus on inclusion are every bit as dramatic as the Berlin wall coming down.

In the current evolution to merge special and general education, to change special separate classes into a system of inclusive classes with support services for ALL children–the new ideas, opportunities, choices, risks and freedoms are truly exciting.

Hopewell Junior School has given Aaron and Tommy the chance to be winners. The chance to show that sometimes the biggest lessons are not just in the classroom.

Their success has been a victory.

Hopefully, in this human race, our world will become a better place because of the mix of people who grow up more fully with the experiences of community inclusion.

Thanks for your continued support. Thanks for making Hopewell—a Well of Hope.

Sincerely,

The Ulrich Family

Epilogue: 20 years later

Junior High turned out to be one of the best times in Aaron and Tommy’s lives. They both had caring teachers who looked at each of their individual needs. I wish we could find out what memories the other students had of their time with Aaron and Tommy in cross-county, track, bowling, choir, gym… I bet they would have some funny stories. I wish them all well.

ps. We often think of how the students are going to grow up and be the next voters, taxpayers, citizens… but we often forget the school staff also evolves. Aaron’s teacher, Miss Lee went on to become a district supervisor and Dr. Taylor, the prinicpal, is the current Superintendent of Lakota. I like to think their experiences with Aaron and Tommy influence who they are today.

Keep Climbing: Onward and Upward
All my best,

Mary

Comments:

Were kids with autism and severe disabilities included in your school? Do you have any thoughts to share? What do you think the future looks like?

A related story is What is Inclusion? plus, pictures of Aaron and Tommy at graduation.

Autism Day at the Opera

April is Autism Awareness month. April 2nd is designted World Autism Awareness Day by the United Nations General Assembly.

World Autism Awareness | Gone Amuck

For the last week, I’ve been following the comment streams on Twitter (#Autism, #ASD, #WAAD…) and other social media outlets like Facebook… and I wonder if the whole world is nuts.

My son is 36, has autism and we are desperate for help. So I appreciate the need for autism awareness and DIRECT ACTION.

For autism awareness day, I’ve learned some people are buying blue mascara and lipstick to spread “awareness about autism.”

Others are using April 2nd as a “retail therapy” day to buy new clothes in blue.

How will Autism Awareness Day impact the lives of people with autism and their families?

For the life of me I can’t imagine why blue lights at the Sydney Opera House, The White House, Empire State Building or the house next door will change a thing–except for the blue light bulb retailer.

Put Time and Money where your Mouth is

It makes more sense to me, that the expense of buying blue lights, hiring a team of workers to install and operate those lights for one day–is just dumb and a waste of opportunity.

Using those same dollars, the Opera House could invite families or parents to an evening of the opera. Sure, the Sydney Opera House might not get the same press, but the impact would be direct and measurable. Real families would have the treasured opportunity for a night of respite.

I understand the White House is meeting with some advocates for autism which is an action step–much more useful in my opinion to a blue illusion.

The Empire State Building–well, there were those romance flicks with the hearts on Valentine’s Day, but really.

Action–not Hype

Now good people and advocates are working hard for all this autism awareness, and I know my skepticism sounds like sour grapes or something mean spirited.

I’m just tired of being used and being the victims of charity.

Past Experiences with the Charity Model and hype

One time our family was on a trip to the Smokey Mountains. My husband Tom, an avid golfer, passed a golf course which had a huge sign over the gate “Welcome Special Olympics.”

Tom went to the front desk and asked if Aaron, our son with the label of autism, could ride in the golf cart as he played golf.

The desk clerk looked confused. Tom said Aaron would be sitting next to him and would not even be on the course. He also told him Aaron has accompanied him on other golf courses and it worked out fine.

As the clerk continued to stammer around–Tom pointed to the “Welcome Special Olympics” sign.

The young man shook his head,

“Tomorrow, our Special Olympic fundraiser is for radio/TV personalities, the Governor and all kinds of influential people coming to play golf. NOT–those kind (pointing at Aaron). This is our public relations and publicity event for the year. It isn’t for them. We don’t allow them on the course.”

Real People–Not Causes

At a time when getting services for children and adults with autism and their families is desperate, my hope for tomorrow is that people will spend a couple minutes with actual people who have the label of autism.

If you want to dress up in blue from head to toe, with blue eye shadow and lips, more power to you. But somewhere in the day, actually touch a real person. Make a difference in an actual life.

Make the Autism Awareness Day, more than a media moment.

Take the opportunity to begin change–one on one.

Keep Climbing: Onward and Upward
All my best,

Mary

What do you think?

Are you wearing Blue? Are you going to spend a couple minutes with an actual person who has the label of autism?

What happens when the roof collapses?

Our House of Cards|Disability Style (Part 2)

Introduction:

I am going to try to describe what is happening to Aaron, my son who is 36 years old and has the labels of autism and developmental disabilities. It is a complicated story. In the comments, let me know if this makes sense.

Click on the Following Articles for Additional Background:

Our House of Cards|Disability Style (Part 1)

Dream Plan Part 4

Attack by Friendly Fire| People with Disabilities and their families

Have you ever rented a house or apartment?

If you answered “yes” you are like the majority of us. It is a typical, normal experience, right?

Normal World

You sign a lease.
You pay your rent on time.
You take good care of the inside of the house, providing the furnishings.
You pick up the sticks and papers in the yard.
You pull weeds, mulch and plant flowers.
You don’t put the garbage out until after 6 PM.
You get along great with your housemate and the neighbors.

Everything’s great, right?

Disability World

In Aaron’s case, he follows all the above, and has lived there for over 9 years.

In addition, since we figured he’d be living there the rest of his life (possibly 60 years) Aaron paid $1000 to build a patio on the back of the house.

Aaron got a HUD rent subsidy so he would only need one other housemate to help pay the rent. With his family, he even showed the owners of the house (a non-profit) how to get HUD approval.

Perfect tenant, right?

But, things are not perfect.

Because of his severe disabilities Aaron and his housemate need 24/7 support staff.

The company that manages the support staff has organizational, financial, and other issues (not unlike most residential companies).

So, though we love and trust Annie, our terrific head staff person, the company can’t ever seem to get additional staff to help–especially on the weekends.

The company continually blames Aaron saying his autism and intellectual disabilities are more difficult than other “clients,” so no staff want to work with him.

So we are stuck.

The county also says all the people who live in a house have to have the same residential provider.

So Aaron, Jack (his housemate/guardians) have to agree before we could change providers.

The county also tells us all the providers have the same issues, so it wouldn’t really make much difference.

So we suck it up, but NOT quietly

With tremendous effort and lots of positive thinking, we keep working to make things better, and fall into an okay routine.

The Plot Thickens

What would you think if one day your landlord calls and says, you have a vacant bedroom in the house and there is a homeless person with severe disabilties who needs a place to live?

Further, the county is short on money and passed a regulation saying all empty bedrooms will be filled.

And oh, since you don’t own the house–tough shit!

Oh, and by the way, the residential company you endure will now be in charge of three people. So if you want to change companies you will need not two–but all three people/guardians to agree before you can change.

They do promise additional quality staff for a couple hours in the morning and evening to help get everyone dressed, bathed, toileted, fed, and groomed. But we have been with this company for over 9 years and know they often make promises they can’t keep.

Again, these are not evil people, they just don’t have the support system THEY need.

Run Run Run

The Perfect Storm

If this was a Stephen King novel, at this point in the story there would have to be some unforseen twists to really make things interesting.

Since, being a person with a severe disability isn’t drama enough, sure enough The Perfect Storm overturns the barely floating status-quo boat.

1. We still have trouble finding adequate staff.
2. Jack, Aaron’s housemate, “falls,” breaks his leg and is now using a walker (with great difficulty).
3. The replacement staff are “trained” by the supervisor over the phone. (Yep, couldn’t make this up.)
4. Aaron’s behaviors are increasing and when switching to new medications, the new staff (trained over the phone) accidently gives an overdose of Zoloft.
5. The county, like all government agencies, is desperate for funds.
6. The visit for the NEW housemate is set up for Tuesday night. Like it or not. (another post)
7. Make up a couple more dramas and they are probably true.

Discussion

Since the county and the residential provider both profess they follow the principles of normalization, inclusion, self-determination and John McGee’s Gentle Teaching…. let’s start there.

Normalization:

A normal person rents a house or apartment:

Unless they violate the terms of the lease, the landlord doesn’t care what you do with the rooms in the house. In fact, they would only care if you brought in an extra person.

A person with a disability rents a house or apartment:

The landlord can demand you put a perfect stranger, with severe disabilities, in one of the rooms.

Even if you say, “These houses aren’t private”– can you imagine going to any other group of people in HUD owned homes, people in the projects, people who are poor, elderly, unemployed, needy and telling them they HAD to add a stranger to their household?

Hey, most people don’t even want to have relatives and people they know move in. Strangers, I don’t think so.

Inclusion:

The house is in a residential neighborhood of single family homes. The houses is small and not zoned for a group home.

Adding one or two more housemates will mean there are twice as many cars, twice the number of staff, twice the number of pick up and deliveries.

One of the reasons the neighbors have been so nice, is they got to know Aaron and Jack. Our efforts to blend into the neighborhood and keep the house looking good has brought a level of acceptance. There is a delicate balance for inclusion in the neighborhood.

Self-Determination:

It seems when there are budget cuts–self-determination and individual choices are scratched off the books.

Aaron

There is no way adding a new housemate is in Aaron’s best interests.

Aaron and Jack have had a terrible time getting quality staff, period.
Few will take them into the community. As Aaron’s behaviors have deteriorated in the last year and he is on more medication, there is less incentive to take him even for walks in the neighborhood, as well as into neighborhood stores…. Aaron is already isolated. Adding a third housemate will make this even more difficult.

Gentle Teaching:

Dang, let’s not even go there.

Summary:

This isn’t all a surprise. In 2009, my husband and I challenged the county board’s authority to do this. Earlier this year, we were alerted this might be happening. See above related posts.

I keep hoping there is some sort of HUD requirement saying the government can’t just bring strangers to live in your house. (There is that constitutional protection against the government forcing people to house soldiers.)

I keep hoping some sort of civil rights, or just human compassion will prevail.

I keep hoping the fact that there have been two MUIs in the house in the last couple months (broken foot and overdose) will give people a clue that the house is in crisis.

I keep hoping the history of lack of adequate staff will also tell people that poorly paid and trained staff taking care of two men who need total care is a difficult job. Adding a third person is ridiculous.

I keep hoping that SOMEONE will notice the company in charge is filling for bankruptcy–duh! Do we really think it is safe to put MORE people in their charge?

Strategy:

We are using every avenue to fight this forced placement.

We are also trying to get the county to think outside the traditional funding box.

For years, we have heard about micro-boards, foster care, private providers, HUD houses, community initiatives, pairing people with disabilities with people who are poor, displaced, out of work….

Where are the creative thinkers who used to work with us? Where are the professionals who are being paid to problem-solve? Where are my friends who I trusted and gave years of volunteer time?

God knows I cry for the poor man who needs a home. If we weren’t in such turmoil, I’d personally offer to help him.

God knows I also hear from my relatives and neighbors that the government is too big and needs to be cut.

God knows I even hear some people tell me, “You created this defective child, it is your responsibility to take care of him.”

Please Comment:

Anyone have any ACES up their sleeves? Any trump or wild cards? Hey, I’ll even consider some creative card tricks *wink wink*.

Thanks to everyone who has sent such kind notes of encouragement. We will survive. Aaron will survive.

But, geez louise… I figured out the Medicaid Waiver, I figured out the HUD rent subsidy and now people all over the area are using those supports. I’m exhausted.

We’ve taken Aaron home with us 15 of the last 30 days because of the turmoil in the house…And that was before the notice this week of the new housemate.  Share your thoughts.

Keep Climbing: Onward and Upward

All my best, Mary