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Thursday, January 2, 2014

Help for children with disabilities sprung from parental love

By JERRY WOLFFE

It was only through the love of parents of children with disabilities who hoped their son or daughter could have a good life that parents organized and sought out needed services.
In some cases, that was nearly 70 years ago.
The real push, according to Tom Marchand, the father of a son with a disability, Michael, 47, came in 1972 after courts determined that children with disabilities had the legal right to a public education.
Marchand and his wife, Sylvia, who died in 2011, helped form AMORC, an organization in conjunction with the Macomb-Oakland Regional Center, to gain services for children with disabilities.
“We took him (Michael) to a doctor who said he was retarded and to put him in an institution,” Marchand said. “The wife and I talked about it and basically felt Michael was going to need help the rest of his life. We kind of made a vow when Michael was two years old that anyone who worked with Michael would do their best or else.
“Over the years, I have lived up to that and I’m sure I’ve hurt some feelings but Michael came first,” said Marchand of Warren.
Michael is nonverbal. Marchand recalled how most of the programs in the early 1970s were in church basements. Eventually they found a program, Pilgrim’s Project, in Ferndale which focused on helping about 20 children with disabilities.
In 1972 when the educational law was passed, the Marchands were told to take Michael to the Warren School District “and make them teach your son.” At one point, a Macomb County ISD official told the Marchands no one in Macomb County had autism,” said Marchand.
“Michael went to a school at St. Dorothy’s. The school was filthy. We formed a parents’ club … and we discovered the power of a parents’ group.”
Back then, children with developmentally disabilities went to school all year around, he said.
Michael received his First Communion and the “ones who could talk bowed and kissed the altar and said: ‘Thank you Jesus’ and there wasn’t a dry eye in the church.”
Michael completed his education at age 26 and went to work in a Roseville workshop where he learned toileting and daily living tasks.
“He lived with us 23 years and went to a group home established by MORC.” That was in 1990.
The nonprofit eventually helped shut 12 state institutions where the disabled and mentally ill were housed, freeing 13,000 people with disabilities to live in community with needed 24-hour care. It has been their mission ever since.
In 1975, the first AMORC meeting was held. “At that meeting, Sylvia and I were asked to be officers so we accepted. The parents also became monitors of group homes to make sure they were safe.
“We were additional eyes for MORC,” said Marchand.
“Today, there’s hope. The hardest thing about Michael, who has autism, is he’s nonverbal. If the parents feel the pros really love their kids, and then the caregivers and providers will do what is best for the people who have disabilities,” Marchand said.
Besides AMORC, the Marchands formed another parents’ organization, the Macomb County Autistic Parents group, “to get together and help our children. We also joined with an autistic group in Oakland County to go to Lansing to change the law” so people with disabilities could get a public education, he said.
As for Michael’s future, “I want him to live as happy and normal life as possible,” Marchand said.

And that’s the way it was meant to always be.
Wolffe is the Writer-in-Residence/Advocate-at-Large at MORC. He can be reached at 586 263-8950.

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