by Mary E. Ulrich | Jul 13, 2024
Aaron watching Tommy play video games
Is summer different for kids with and without disabilities?
As parents of children with disabilities, it is difficult to know “What is realistic?” “What goals do I want?”. I have always found it helpful to measure “normalization” by comparing the life of my son Tommy with his brother Aaron. Below are my thoughts about summer activities when the boys were young teens. The lessons I learned helped me cherish the final “inclusive” story below. Hope you’ll share your thoughts and success stories.
Tommy, my 13 year old son, with the label of “normal”:
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 which included 2 practices a week and a game. In August he began daily training for the school cross-country team.
Was active in a neighborhood network of five boys who decided to start a 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 3 times and his friends 5 times.
Had a season’s pass to a nearby amusement park and 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
Aaron, age 14, with the label of autism, intellectual and developmental disability:
Aaron went to two weeks of “special” camp: Easter Seals and Stepping Stones.
Aaron’s major activity was watching Tommy play baseball, video games…and riding in the carpool to drop off Tommy and his friends.
Aaron also has a pass to the amusement park, but can only go with an adult (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 from the other 9 months of the year.
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*
He was not invited to overnights with cousins or friends.
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 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 wouldn’t 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/…oh perhaps…some wonderful person will believe that a community is more that a group of houses, businesses and people.
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). If Aaron had an inclusive swim buddy, Aaron wouldn’t have to go to “handicap swim” but rather the general swim with the other kids.
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, Tommy and his friends stopped by our house to make some peanut butter and jelly sandwiches for an impromptu 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 his bike in tandem with his brother.
In about one hour the picnic ended and they brought Aaron back.
That was the highlight of Aaron’s whole summer.
Our Olympic Moment–not, Special Olympic Moment
That moment for Aaron was sort of like the experience of an Olympic ice skater, gymnast, American Idol singer 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 experience of community integration and freedom. They are the next generation of soccer coaches, swim instructors, church and scout learners.
The change of inclusion has begun.
Keep Climbing: Onward and Upward
All my best,
Mary
Related Stories:
On the last day of Junior High School.
Dream Plan for Aaron–14 yrs old (Part 2).
America the Beautiful: A Family Vacation, Plus.
Share YOUR Thoughts:
Are summers different for kids with and without disabilities where you live? Can you think of anything you could do to help? Any way to include a child in the activities of your children? Any tips to share? Any stories from the 90s? 2012?
by Mary E. Ulrich | Jul 12, 2024
photo credit: djwhelan
Every day we read about good people planning charity events for people with disabilities.
I’m not sure how I feel about this.
Wait! Are you wondering how I can be an advocate for people with disabilities and not just jump up and down when two caring people are trying to raise funds for people with disabilities?
Let’s just say, “It’s complicated.”
My first fundraiser was when Tommy was an infant, Aaron was 20 months old and still not sleeping through the night. Two hours a day, I would drive them across town to Stepping Stones Center for the Handicapped. Perfect time for me to volunteer to lead the fundraiser, eh?
What pushed me into action was the 30 babies in the Stepping Stones program and no teacher. Sure there were amazing volunteers. But these children, who needed so much help, did not have a qualified teacher. I found that unacceptable. I could sleep in a couple of years.
Community Fundraisers
The local shopping center was having its annual charity craft show. At the organizational meeting, I gave my impassioned speech, we were chosen as the “designated charity” and then for the next month all the parents, grandparents, friends, and neighbors of the “Tiny Tots Program” spent our free time making items for our booth. We raised about $3,000 which was matched by the organization and an official “teacher” was hired.
Special Fundraisers
After that, there were fundraisers for The Mothers of Special Children and the Arc (formerly known as the Association for Retarded Children), and TASH (formerly known as The Association for People with Severe Handicaps), and the school district Special Parents group to fund summer school… and on and on.
I met other mothers (mostly) and we had many good times, but I started asking why we had to have charity drives to fund important services other children in the community took for granted.
Regular Inclusive Fundraisers
After our court case and Aaron was finally allowed to go to public school, I got involved in the regular school PTO fundraisers. We had spaghetti dinners, White Elephant sales, Dances, Raffles, Magic Shows, Motorcycle Rides, Bake Sales, Races for… and saving boxtops, and cans… It goes on and on.
I learned about inclusion (click here) and realized we didn’t need a “special track team” we only needed an extra support person to help Aaron to participate in the track team events.
“Disability World” Fundraisers
This led to more committees, grant writing, and working for levies for the County Board of Mental Retardation and Developmental Disabilities as well as the regular local school district.
Other parents got to have jobs and earn money to help their families. I got to be the only non-paid person at numerous committee meetings.
Now, we did some great things that wouldn’t have happened without the volunteer parents. We began an after-school club and a summer school program so our children would have something to do and not lose all the skills they gained during the school year. We started four non-profit groups and incorporated them. Yes, indeedy, sleep would have to wait.
But it never ends.
I believe many of the “professionals” in these organizations spend their energy ensuring their own jobs and pay and they give lip service to the support of the people they are supposed to serve.
Autism Speaks and March of Dimes… are currently under fire because one of their main reasons for existence is to raise money to wipe out people with autism and developmental disabilities. They want a cure and spend much of their funds on sending Medical Doctors to conferences and conducting research.
But what about the people who are here now? These professionals, who make good salaries, have their expenses paid to conferences. Parents, who volunteer, not only pay our own way–we are supposed to donate to send the doctors? Plus, their executive directors make big big bucks. When I learned what some of the executives of these charities were making–that was it.
When it is all about charity, then it is all about the person who is giving the money. When it is about a person’s life and rights, it is about the person with the disabilities.
Some large organizations understand this, but most don’t. Here’s a post on my experience outside my grocery store (click here).
Everyone wants to help babies and young children
Aaron’s life was more interesting because of my leadership and volunteer work. But now he is an adult, and there are even fewer opportunities. Babies are cute and helpless and of course, we want to help. But for the majority of our lives, we are adults. That’s 20 years as a young person and maybe 50-60 years as an adult.
So, I don’t do much volunteering for charitable organizations anymore.
I spend every moment of my life working directly with people with disabilities or the caregivers on the front lines–the ones who make little more than minimum wage. The people who take Aaron to the bathroom, cut up his food and clean up his messes. The people who celebrate Aaron’s diversity and think he’s a pretty neat guy. There is no tax write-off, no non-profits–just people who care, do the work and need resources.
Segregated Charity–charity gone wrong
I don’t believe in one-time events like, “People with Disabilities Come to Church Sunday” where the church rents a ramp for the weekend (I couldn’t make this up). I don’t believe in Special Olympic Golf Fundraisers when they won’t let Aaron even ride in the golf cart (“Oh, honey we just raise money for these poor children, we don’t actually want them on the course.”–couldn’t make that up either.) I don’t want Girl Scouts showing up at my door saying they want to play with my child because it is Lent and they have to do penance (someday I’ll share the details on that one.)
Rights–not Pity
As Joe Shapiro wrote in his classic book, “NO PITY.” People with disabilities don’t want to be the object of other’s charity. People with disabilities have needs, but they are citizens with rights. They don’t want the handicapped parking place because you are pitying them. They want the handicapped parking place because as a citizen and consumer, they need the extra wide space they need to get out of their car. And, as an American, I’m proud our country recognizes that right to equal access.
If we really want to help people with disabilities–don’t give them your dimes. Instead, make room in your lives and give your love..and friendship. That is the best gift and, I believe, closer to the Biblical definition of “charity.”
Like I said, this is complicated.
by Mary E. Ulrich | Jul 9, 2024
Aaron’s a Dude: The Dignity of Risk
Saving the LUCK
For several years Aaron spent 3 days on a Dude Ranch in Michigan.
Before the Dude Ranch closes for the winter, buses of adults with all kinds of disability labels arrive and sleep in bunk houses, eat in mess halls, go boating, ride horses and sing songs around the campfire. For many of these adults—this is the highlight of the year.
The ranch’s owner is friends with the owner of the residential company which provides Aaron’s supports. (This is a great example of Bronfenbrenner’s system’s theory—circle of friends, using your contacts…click here).
Aaron is assigned a staff counselor one-on-one, but everyone pitches in to make sure everyone is safe and has a good time. Always being safe and having a good time sometimes contradict each other. Bob Perske used to talk about, “The Dignity of Risk” and as parents this is a complex and difficult balancing act.
This year we were lucky because one of Aaron’s regular staff went to camp. This was nice because she has worked with Aaron for 6 months and knows what Aaron likes and doesn’t like. So that helped mom’s anxiety and I would think made a big difference to Aaron.
This is about Aaron’s fifth dude experience and each time it’s a worry for me and Aaron’s dad. It is hard to get good feedback on what Aaron does and doesn’t do. I wish he could talk and tell us but I figure it is a change of pace, he likes to ride on the bus, sing songs. Especially, he likes to go horseback riding.
Aaron as a little cowboy
When Aaron was growing up, he took horseback lessons for about 10 years. He only stopped because he reached the 150 pound weight limit. When Aaron sits atop a horse, he looks like Prince Charles: head high, back straight, sometimes he even points his toes. I think he and the horses communicate in their own cosmic language. Sue Radabaugh, Bobbi Theis and the physical therapist at Cincinnati Riding for the Handicapped gave Aaron and each rider a lucky horseshoe at the end of each series of lessons.
We learned horseshoes should always be positioned so the luck stays inside the horseshoe and doesn’t fall out. Aaron still has the horseshoes–God knows we don’t want to have our luck fall out.
Each year, I try and give Aaron “the dignity of risk” and not worry about the million of things that can go wrong at camp. I don’t like to think of myself as one of those “over-protective” or “hovering” parents. Some years have gone better than others, but each year we hope and pray our luck holds.
It is just difficult having a person like Aaron who is so vulnerable, when we don’t really know how the staff will act in this very different environment. For instance, Aaron has red hair, freckles, and burns in about 15 minutes in the sun. His caregiver is from Jamaica and has never had a sunburn in her life. I send sunscreen, I give instructions, but each year we ask, “Will Aaron come home with a sunburn?” In the post about deciding to go to the family reunion (click here) I could actually do the ecological assessment and control the environment. But the Dude Ranch is too far away. I had to put the control in the staff’s hands. And we’ve had some rocky experiences with some staff.
We did find out that Aaron went right up to the horses and wanted to ride, he went out on the lake in a boat four times, and he passed out the light bracelets for the barn dance the last night. The little radio we sent for the bus ride worked well, and actually came back with Aaron. Only one toileting accident. So all is well for another year. Hopefully we will see some pictures. And hopefully we will be even better prepared for next year.
Maybe I should hammer some horseshoes (with the luck inside) up on our front door. Whew! made it another year.
by Mary E. Ulrich | Jul 5, 2024
Oscar Pistorius, Inclusion at the Olympics
Olympics, Disabilities and Inclusion
There are many legends around the origins of the Olympics. But the main idea was countries and individuals would meet every 4 years and set aside conflicts–and this shared experience would lead toward greater understanding and fewer conflicts.
Many believe the ancient Olympic games began with a foot race.
The 2012 Olympics were held in London, England. And, a footrace is not so simple. It turns out, the definition of a “foot” became a source of controversy.
Even with later personal tragedy, The Olympics story of Oscar Pistorius from South Africa is an inspirational lesson about the inclusion of people with disabilities.
Check out this video, “The fastest man with no legs” who uses his “blade runners” to race in the finals of the Olympics.
Yes, he races in the segregated Paralympics, but also in the inclusive regular Olympics.
This is an example of inclusion, self-advocacy, the power of a supportive family and an exceptional adult with disabilities.
I think this is also an excellent example of what the Olympic Spirit is all about. The Greek founders might never have envisioned this sort of story, but I’ll bet they were cheering up on Mount Olympus as Oscar became one of the fastest runners in the world.
“Unfair Advantage?”
If you have feet, you have tendons and muscles which give a “spring” to your step.
If you don’t have feet, you … what—sit at home? OR…
You have the choice of a segregated Special Olympics or a Parolympics event.
As Dennis Burger says, “I always think it’s ironic when officials claim an unfair advantage by a guy with a prosthetic device. Go Oscar!”
Natalia Partyka, Women’s Table Tennis
Go Natalia!
Lessons from the Olympics
Why is it that those of us who would never spend 10 seconds playing or watching ping pong, or skeet shooting, or footraces… voluntarily devote our precious time to these events on TV?
Why is it we choose to root for one team or one person?
With all the important events happening in the world, why would the evening news start out with the country’s Olympic medal count?
What is the magic that draws our attention?
I think the answer has to do with the concepts of “Us” and “Them.” The answer is rooted in our deep psychological need to belong.
We can wonder about the concepts of nationalism but like it or not, we are part of a tribe, a nation, we are part of “Us.”
And when the collected ego of our nation wins, we win.
So we say, “Go USA” or “Go England” or “Go Canada” when we really don’t care one bit about archery or who can do the backstroke.
The Need to Belong
In Maslow’s famous “hierarchy of needs” belonging and having people who care about you is critical to survival–more important than how many skills you have or self-actualization. Sometimes this means being part of a tribe, sometimes being part of a family, sometimes part of a church, school or … nation.
Or, sometimes sharing a bond with someone with a disability.
So when we hear about a runner who uses blades because he has no feet, or a woman who only has one hand and is a table tennis champion—suddenly we care about them.
We drop our nationalism and transfer all our goodwill to these courageous individuals because they have a disability and are part of our TEAM INCLUSION. We don’t know them personally, we aren’t a part of their country, but they are part of our heart.
They prove that all our daily advocacy efforts are worth it. That the dream of inclusion can be real.
They are changing the attitudes and social consciousness of a whole generation.
And it doesn’t matter if they are from South Africa, Poland, the US, or anywhere—they belong to us and our vision of an inclusive world.
Let’s see what new stories of inclusion will happen in 2024.
Keep Climbing: Onward and Upward
All my best,
Mary
Related Links:
The Values of Inclusion
See Aimee Mullen in a previous Olympics.
Do the Words “Disability” and “Handicapped” mean the same thing
Aaron’s Olympic Moment
Aaron’s Inclusion on the Junior High Track Team
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