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Wednesday, November 20, 2013

In Thanksgivings past, Detroit opened its heart to its special children

When I was a child attending an orthopedic school for children with disabilities in downtown Detroit, my mother would wake me and my younger sisters, Rene and Nancy, before dawn and get us dressed up to go watch the then Hudson’s Thanksgiving Day parade.

For myself and the 180 or so other kids with disabilities at Leland School for Crippled Children, it was a really special and unforgettable day.

We’d dress up warm in snowsuits and wait anxiously for the yellow bus that said “Leland” on the side to turn down our street of Pinewood off of Gratiot and Seven Mile on Detroit’s northeast side. We’d climb on the bus with the other children with disabilities and their parents and the bus would take us down to Woodward near the former J.L. Hudson’s building. The building had the world’s largest flag on its side. It was several stories high and looked especially immense to a young child who was all excited about seeing Santa.

We’d stay in the bus once we got to the end of the parade route and we had a spectacularly close view of the floats.

They would start coming our way as we heard bands playing Christmas music. The floats were gigantic. They were colorful. The people on them were dressed in fancy outfits, clowns, elves and the floats would come one after the other for what seemed like forever. We didn’t mind because we all knew that sooner or later Santa Claus would come.

The clowns would carry giant balloons or cartoon characters. I would always wait for my Uncle Tom Opatich who worked as Hudson’s during the year as a driver who delivered furniture. But at Thanksgiving he would turn into a clown and volunteer to be part of the parade. He would get all of the other clowns to come on our special bus and give us big hugs because we were the special children with disabilities who were receiving loving treatment from great souls on a wonderful day.

My sisters always thought it was cool that their big brother went to an orthopedic school because they got to go with him and our mother, Carol and now 98, to the Thanksgiving Day parade for a special treat.

When we started hearing “Santa Claus is Coming to Town,” we on the bus would really get excited because Santa would jump off of his red sleigh and leave all the reindeer, including Rudolph and Dancer and Prancer behind and hop up the three steps of our bus and go down the aisle and ask: “Have every one of you children been good boys and girls this year?” And we’d scream back in unison: “We sure have Santa.”

And then Santa would ask what did we want for Christmas. Most of the time I wanted a real cowboy suit or a chess set. My sisters told Santa they wanted dolls or clothes and mother would say she didn’t need anything as long as her children were happy and had enough good food to eat for the holiday with our dad, Vincent, a Detroit policeman.

And after a few minutes, even though it might have been 15 minutes, Santa would climb off the bus and go back and hop on his sleigh and welcome all the thousands who had come to downtown Detroit in the 1950s to watch the Thanksgiving Day parade.

Our bus would wait a while until traffic of maybe a million people would clear out and then the bus would make its way back to drop each of us off at our homes.

There never was one tear about not being able to walk or talk or having to wear braces because we, the students, had a disability. We were special and we knew it. We had just received the hearts of many generous clowns and a special hug from Santa, that upon looking back now at age 67, lasted a lifetime.

 
Jerry Wolffe is the Writer-in-Residence and Advocate-at-Large at the Macomb-Oakland Regional Center. He can be reached at 586-263-8950.

Wednesday, November 13, 2013

Relentless effort pays off in integrating people with disabilities into society

Even by advocates who are well-known, Liz Bauer is admired and respected for her decades of helping to lead the way so that people with disabilities can live in communities with proper help and not waste their lives in state-run institutions.
Bauer, a former member of the Michigan Board of Education and Executive Director of Michigan Protection and Advocacy, spoke Tuesday night (11.12) at a meeting of advocates, executives and directors of nonprofits from Macomb and Oakland counties at the Auburn Hills' location of the Macomb-Oakland Regional Center, Inc. Since its inception in the early 1970s, MORC has been instrumental in closing the 12 state institutions for people with disabilities and mental illness in Michigan and moving some 13,000 people in to homes, apartments and into mainstream society.
Bauer, who has a 41-year-old daughter with development disabilities, emphasized how important it was to know and keep in contact with local as well as federal political leaders.
"When I say to them (lawmaker) it takes two hours to feed a child, they have no idea of what I am talking about," she said.
That's because the average lawmaker really doesn't see in his or her mind what occurs when a child with severe disabilities and fragile health needs to be fed through feeding tubes and a vigilant parent has to make sure the child doesn't choke or have other problems.
"When visiting a lawmaker to press a civil rights issue, bring your child with a disability with you," she said, noting it really makes a difference when a state representative or state senator sees the extent of the child's disability and the types of supports he or she will need. "They realize that child is a person.
"We need to teach (society) that everyone is valued, everyone is worth it," Bauer said.
She also said, "We need new energy and younger parents" who have children with disabilities to re-energize the movement for civil rights and equal access to things needed to live a full life.
The problem might be that there was such success since the early 1970s in getting people out of institutions and into their own groups homes and apartments with 24-hour care that many forget the lonely mother who stayed at home to take care of a child with a disability. Some mothers, such as one in Royal Oak, had three children with severe developmental disabilities who needed constant care. The mother's life was liberated too when she received help from MORC.
Bauer, who started advocating for educational rights of people with disabilities before her daughter was born, said when it comes to budget cuts for those with disabilities this is the "chapter nobody reads."
She said advocates must continually remember the "5 w's + h = plan. The five w's are who, what, when, where, and why and the h is how.
Objectives should be clear and precise so lawmakers can quickly understand the message.
"You don't need to spend an hour trying to decide what to write a lawmaker, just send them a postcard and write 'We need more money allocated' to help those with disabilities."
"There always are forces for an against an objective," she said. "The best way to succeed or develop a lawmaker at the local or national level is to be honest, just give them the facts."
She also said advocacy can lead to burnout or discouragement so "You have to celebrate your small wins."
So parents of children with disabilities need to step up and keep civil rights in the minds of our political, economic and social leaders or some of the major gains made in decades after a century of suffering by those with disabilities will be lost. Remember if you are of child-bearing age, you just might have a child with a disability and then you will wish you had listened to these words.
We can see by Bauer's example that such small victories add up over time and with great persistence and intelligence to a much larger and better world for those of us with disabilities. For that, we owe her a great deal.

Jerry Wolffe is the Writer-in-Residence and Advocate-at-Large at the Macomb-Oakland Regional Center. He can be reached at 586-263-8950.
www.voicesofdisabilities.blogspot.com

Tuesday, November 5, 2013

Special needs apps help those with disabilities adapt to life

Hundreds of special needs apps now are available to help make life better for the millions of people, especially children, who have disabilities.

The first app was released on April 3, 2010 and the field has grown rapidly since, said Tzvi Schectman, a family coordinator at the Friendship Circle of West Bloomfield. Many of the apps are free with the most expensive, “Lamp Words for Life,” costing $299.99, according to the Website, www.friendshipcircle.org/apps/browse. “Lamp,” for example,” addresses the language development and communication needs of children with autism.”

Categories of apps include those for speech and language, communication, social skills, life skills, behavior, educational, scheduling and games.

Those developing apps fill out a form on the above Website to get approval and distribution of the app on either the Apple or android platform.

“This is absolutely a growing field,” said Schectman. One of the first apps was “Proloquo2go,” an assistive communication app. It helps with children who have autism or are nonverbal. “They choose pictures of items to communicate” and “it works with most anyone with impaired speech.”

The scheduling app helps someone with a cognitive disability structure the events in their days.

It’s a visual schedule that might show a picture of a breakfast table, then a school bus. Some of the apps also help “parents monitor their child’s behavior,” said Schectman.

One app, “The Birdhouse for Autism,” allows parents to keep track of what their child does during the day. “Every day they write what the child ate, how medications affected the child, and then Birdhouse finds correlation and patterns in that child’s everyday life to see what meds or activities are working and what areas need more work or modification.” The app is free and parents need only create an iPhone account and enter information about their special needs child.

Other apps help develop social skills, teach proper etiquette, encourage children with developmental disabilities to make eye contact with others and even how to say hello to someone.

The 59 apps in the social skills category on the Friendship Circle website include “Stepping Stones,” a personal visual organizer for prompting daily routines and schedules. Its cost is 99 cents. It was designed for users with developmental disabilities and the app assists in building independence. A simple interface allows a caregiver to create a routine, or ‘Path’, for the user to follow. The Path then works as reminder with visual and audio guides to act as prompts.

 Jerry Wolffe is the writer-in-residence/advocate-at-large at the Macomb-Oakland Regional Center. He can be reached at 586 263-8950.