Archive for the ‘Ulrich Family’ Category
To celebrate the new school year here are some of my favorite posts:
Article 1: Why Do We Go to School?
Article 2: Back to School| A New Year of Learning
Article 3: Back to School| What is Inclusion?
When my son Aaron was in school, shopping was part of his curriculum. From the time he was ten years old he went to the bank and grocery one day a week as part of his special education school program.
This was best practice and came from the work of Drs. Lou Brown, Alison Ford, Sharon Freagon and many others. The idea of a functional curriculum for people with autism, intellectual and developmental disabilities is:
* it takes longer to learn skills, so let’s make sure we teach important skills and not waste their time on dumb stuff
* it takes lots of practice, so let’s give the student lots of opportunities and trials
* use it or lose it, so let’s make sure the skill is something the student will need their whole life
* transition from school to adult life will be smoother
* we only teach skills that if the person didn’t do it, someone else would have to do it for them
* the ability to purchase items would give the person more dignity, self-esteem, self-determination skills and choices in their life
The way it worked was each week, Mom sent in a check for $10.00 and a shopping list. The class went to the same grocery store (because each store is different). Each student cashed their check at the bank and then bought items from the list to take home.
In addition, students also planned a lunch to be made in the classroom the following day. Each would purchase a couple items for that group lunch. These items were purchased with the classroom credit card.
This functional curriculum was based on the philosophy that Aaron would go to the grocery the rest of his life. Before the school year started the IEP team decided this was a high priority skill because he would need to buy food and other items when he was an adult. If he didn’t learn to purchase these items, someone else would have to buy them for him. If Aaron could purchase the items he would have more choices and say in his life and therefore a better quality of life. (Who wants someone else deciding you can only have Cheerios for breakfast all your life.)
Related Service Staff
The curriculum was designed by the IEP team including specialists and the parents. After all, who would be taking the student to the grocery on the weekends, summer, and after school. And who knew what the student liked better than their parents?
I was in the school a lot and went on many of the community training trips with Aaron and his class.
It takes a Village
The speech and language therapist helped Aaron build picture sequences of “shopping at Krogers,” check-off lists with pictures for grocery lists, and learn to interact with the cashier “Thank You” and give a High 5 to the bagger….
The occupational therapist helped Aaron figure out which coin purse/wallet worked best, learn to pay with the next highest bill, learn how to take the money out of his wallet (hold wallet in left hand and take out bills with right) and after many failures of getting the change back in the wallet–it was decided Aaron should just put the change in his pocket….
The physical therapist helped Aaron figure out how to climb up and down the steps on the bus (hold on the rail with his right hand and count the steps), how to maneuver the parking lot (and yes we had an IEP goal that said with 50% accuracy), how to enter the right door–even if there are two “in” doors,
how to reach the items on the bottom shelves (hold on to the grocery cart with his left hand and reach with his right)….
Depending on the therapists schedules, they might only be involved in periodic assessments, or they could go with the class every week. This was an excellent way for the therapist got to really see Aaron in this environment and practice REAL life skills.
The teacher and assistant teachers went every week with the 6-8 students in the multi-handicapped class. She/he helped Aaron match his pictures to the actual items in the store, find his favorite items and put them in the cart, learning appropriate social skills….
After High School
Unfortunately now that Aaron is out of school, he has lost most of those skills because adult service staff refuse to take him to the store or don’t have the knowledge or support they need. Here is a story about Aaron’s home (click here). It is not the fault of the staff. Some of them are very loving and do a great job.
So I take him every weekend when he is home with us. Here is a story of a recent shopping trip (click here).
Aaron and I are a team and we have worked out our own system. We only shop for about 10 items and Aaron puts the items in the cart. Sometimes Aaron will grab something off the shelf and if it is anywhere close to something he might want, I’ll let him buy it. ie. if it is a bag of cookies or cereal –he can keep it. If it is a box of denture tablets probably I’ll tell him what it is and put it back.
Choices: Quality of Life and “If Only”
If I had the opportunity to change things in Aaron’s life, it would be that adult services used a functional curriculum and adult residential services gave Aaron and others with autism and severe disabilities the opportunities to practice their skills. There is no question Aaron would not currently be LOSING these skills. There is no question these skills would enhance Aaron’s self-esteem and quality of life.
The reason I could insist on these skills being taught and used when Aaron was school age was because of the federal mandate in IDEA. The Individual with Disabilities Education Act said that parents were part of the IEP team and the parents had due process if they disagreed with the school personel. There is no such mandate for Adult Services, no due process for parents and/or guardians. Plus, in Adult Services the staff does not have to be trained or have any teaching license.
As my friend Deb used to say, “When I am made Queen of the Universe” I will declare it. Until then, I’ll take Aaron every weekend and give him as many functional experiences I can.
And of course, I’ll dream of the day I am Queen of the Universe. *smile*
What ifs? Comments?
Any stories about your child’s school experiences preparing them for the future? Any luck with using those skills in their adult life?
Anyone else want to be “Queen of the Universe”?
Keep Climbing: Onward and Upward
All my best,
Building Community: One Grocery Trip at a Time
With Aaron, my son with the label of autism, every trip to the grocery is an adventure.
Before we go, I usually do an ecological assessment (click here) and use some of the skills Aaron learned in his functional curriculum when he was in school.
Over the years and with lots of practice, I know what Aaron likes and dislikes. I try to make the shopping trip a good experience for both of us.
We try to go in the morning when the store isn’t crowded. We’ve developed a system where I walk in front of the cart making sure there is no person or display in the way. Aaron then follows pushing the cart with both hands on the handle.
Aaron is really good at following and knows to stop when I stop. He seldom bumps other people or the displays. This is a skill we have worked on for years and practice every week. I am really proud Aaron can do this.
We usually go to the same store.
That way Aaron is familiar with the physical space and layout. He knows the grapes and carrots are on the right front, the bread is in the right back, and after we pick up the milk and yogurt on the far left we will head to the checkout lanes. We usually only buy about ten items so the wait in line is short. We try to build a routine and structure into the experience.
We try to build a relationship with the store personnel.
This store was only a mile from where Aaron went to high school but in the suburbs we rarely see anyone we know. One of the baggers used to be in the special education program. She does a good job and always says hello. Some of the regular shoppers talk to her by name. She is one of our special ed. success stories and has been employed for over 10 years.
But I never know what’s going to happen.
Yesterday we went to the grocery near Tommy’s house because we wanted to let his dog out for him. Even though it was the same chain we always go to, the store was set up differently. STRESS.
I thought noon on a Sunday would be okay, but it was packed and everyone was in a hurry because the football game was due to begin at 1 PM and the only way to survive a Bengal game is with lots of beer and snacks. STRESS. STRESS.
Being ready for surprises
Aaron did pretty well. We got our groceries and went to the car. I was putting the bags in the trunk when Aaron started pounding on the roof of the car next to us. He’s never done that before.
The young man was getting his two young daughters out of the passenger side. He looked up and yelled, “Hey, stop that!”
Quickly I grabbed Aaron and was about to get him into his seat when Aaron pushed me away and again pounded on the top of the car. This time the guy came over to our side of the car.
I started to apologize when the guy said, “Aaron, is that you?”
Aaron gave him a side-ways glance.
I was stunned and didn’t quite know what to say. I looked at the guy and he looked at me, and he repeated, “Is that Aaron?”
There wasn’t much room in the space between the two cars. I took a deep breath and turned Aaron toward the young man. “Aaron do you know him?”
Instead of punching Aaron, the man gave Aaron a high-five.
I fumbled out a, “How do you know Aaron?” and the young man said they went to high school together. He said he used to come into Aaron’s class and take him to the gym. He said he and Aaron used to eat lunch together.
He touched Aaron’s arm and guided him over to the other side of his car and introduced Aaron to his two children who were about 5 and 3 years old. He told them Aaron was a friend from school and then had Aaron give them each a high-five.
Aaron was strangely quiet. He patted the younger child on the head and said, “Ahh.”
I thanked the man for saying hello. He said his name was Todd and he asked a couple questions about where Aaron lived.
We both talked about how Aaron must have recognized him and since he didn’t have any words, he used the pounding on the car to get attention. We both thought that was very clever of Aaron.
Finding More than Groceries
When we worked so hard for inclusion for Aaron in the public schools, we dreamed that Aaron would have a community of people who knew and accepted him. People who could see his gifts and strengths.
Every once in a while we have a unique success story that makes all that hard work worth it.
We’ve never expected big monumental experiences. This magic moment where Todd remembers Aaron and thinks enough of him to want to introduce him to his children–that’s big enough.
This is my 50th post. I hope you will check out a couple of the other articles and share your thoughts.
Do you have any experiences to share? Any magic moments?
Do you think the future will be better for adults with disabilities because of inclusion in the schools?
Keep Climbing: Onward and Upward
All the Best,
Tommy is in the second row. Of course, Aaron is the red head in the middle of the picture who refused to look at the camera.
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.
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,
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.
BACK to SCHOOL Article 2
Why Do We Go to School?
A New Year of Learning
This is one of my favorite stories–an updated article from when Aaron was 8 years old and Tommy 6. Enjoy!
It was the weekend before school began and Cincinnati was sweltering from a week of 90 plus temperatures with over 50% humidity.
And partially because most of our neighbors don’t have air conditioning, and partially because we enjoy each other’s company, all the moms were sitting on the porch steps waiting for the street lights to signal the time for baths, bedtime and the end of summer.
Several of the children were busy with final rehearsal for the “Ralph Avenue” version of Snow White and the Seven Dwarfs. Erin was the wicked queen, Allison the prince charming and the younger children Eric, Patrick, Tricia, and my son Tommy were assorted other characters.
The kids ran in and out of the yards wearing their winter caps with the tassels dropping over, trying to look like dwarfs.
After a while, the large cardboard box from Allison’s new stove changed from being used for the stage scenery for dwarfs to a cool hideout for cowboys.
Patrick’s mother was telling us a newspaper reporter stopped by her house to do an interview with “a new kindergartner.” It would be a three part series on Patrick’s impressions before school began, during in January, and a third article after in June.
The poor reporter had a time of it because every time she asked Patrick (5 yrs.) about the imminent kindergarten experience, Eric (6 years and a kindergarten veteran) would give his answer, including a heated discussion about, “Who would be picked for the cookie passer?”
It was so much fun to be watching the kids and hanging out with other mothers but the beginning of school is very traumatic for me because of our continuing problems with the special education school program for my son.
Aaron has the label of autism and severe intellectual disabilities. A new year signals the beginning of another year of battle for inclusion.
But maybe because it was too hot and maybe because I was surrounded by friends, I continued to sip my ice tea and enjoy the normal conversation of my neighbors.
Patrick said his favorite football team was the Jets. His brother Michael, age 3, noting the adults’ interest, announced his favorite team was “the helicopters.” Jets—helicopters, why not?
Tricia’s soccer team won every game last year with a very gentle and knowledgeable coach. This year they won their first game but the new coach yelled and screamed and was upsetting the team and their parents. The parents wondered if victory was worth the price?
Moments that make parenting fun
Tommy went for his school physical and when the nurse asked him to urinate into a cup he burst into tears.
I pointed to the counter and its rows of labeled cups and told him everyone—even grownups–had to do this.
Sobbing he said, “Okay—but I won’t drink it.”
Later he asked, “Mom, why do they need a toilet in there is everyone pees in a cup?”
My friends and I exchanged sale prices on jeans and problem solved about the best backpacks and gym shoes with shoelaces that didn’t need to be tied.
We laughed, reminisced about summer and shared the thunderstorm warnings.
Eric’s Mom passed out popsicles.
All this time Aaron was walking up and down following the crowd of “dwarfs” as they flitted from yard to yard. He didn’t get a lot of direct attention, yet he was part of the group. For a time they all put on football helmets and Aaron went over, knocked on them to hear the funny sounds and everyone giggled. Aaron got quite excited and even though he is tactily very defensive he allowed them to place the helmet on his head, for a minute anyway.
Tommy brought out his golf clubs and soon Eric and everyone tried a few swings hitting a large flowered ball. Once Aaron was too close and thoughtfully Patrick took his arm and helped him get out of the way and Eric adapted and shortened his swing.
Then the crowd was back down the street again. This time Aaron waited for the abandoned golf club. He bent over and balanced perfectly picking the club out of the grass. He began in his own way to hit the big plastic ball around the yard. Then he too lost interest and headed back down the street to find the other children.
Four years ago, the same day we moved into our home, a group of people on the other side of town filed a lawsuit to protect their neighborhood from the “danger’ of a proposed group home for people who were labeled mentally retarded. I remember my worry of meeting our new neighbors and their reactions. What would be their concerns, fears? Would they allow us into their community?
There have been awkward moments when Aaron would do something inappropriately. But then “normal” “regular” young children have their good and bad moments like the rest of mankind.
Now Aaron was just Aaron and each neighbor had worries about jobs, children, families—the usual. We were a part of their neighborhood, their community.
As the sky darkened and the parents began to gather up the toys, football helmets, golf clubs and the talk again turned toward getting the children to bed so they would be fresh for the first day of school, I couldn’t help but think of how children and adults learn.
We use our creativity for Snow White costumes and playing with discarded boxes. We use our problem solving skills to find sale priced jeans to stretch our budgets. We use skill development including repetitive drill and practice for playing soccer and for picking up golf clubs out of the grass. We build on our experiences and associations whether they are jets and helicopters, cups and drinking, or how we feel about people who are different than we are. We also learn from people, some of whom are rough coaches, some parents, some newspaper writers, and some—neighbors.
School may begin tomorrow but in our neighborhood a whole lot of learning happened tonight. And perhaps, just perhaps—because Eric and Pat and Tommy will grow up with their incidental learning, experiences, associations and relationships with Aaron, the years of battles for belonging, full inclusion and citizenship will be shortened and our war for acceptance will be won.
Sometimes the make-believe lessons of Snow White overlap with the real world lessons of our family. After all, wasn’t Snow White the one who sang: “No matter how your heart is grieving, if you keep on believing, the dream that you wish for will come true.”
Keep believing, keep dreaming and a Happy School Year to All.
Has our dream of inclusion for all kids come true? Certainly more children now have the opportunity. Aaron, Neil Roncker, Jenni Wetzel, Julie McMahon–they were the first kids in the doors of the public schools in Greater Cincinnati. I believe with all my heart they touched the lives of their peers who are now grown and sending their own children off to school.
And some of these young parents became the doctors, teachers, bus drivers and parents of kids with special needs. Our lives really are all part of each other, all part of the circle of life. I hope this new generation feels better prepared. I hope the schools their children attend are also better prepared. I hope our communities are more welcoming to those who have differences.
What dreams are we still wishing for? What lessons are we still learning?
Please leave a comment so we can celebrate this new year of learning.
What are you thinking about as the school year begins?
Keep climbing–onward and upward.
All the best,