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MDA’s award-winning bimonthly national magazine goes to everyone registered with MDA, as well as to MDA clinics, researchers and subscribers.
Quest publishes articles on all aspects of living with a neuromuscular disease, and updates on research findings. Quest’s circulation is 125,000.


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MDA staff writer Kathy Wechsler, who has Friedreich’s ataxia, describes the trials and tribulations of moving out of her mother’s house and into her own apartment. She documents her strategies for becoming an independent adult, aided by her power chair and service dog, Chance.
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  Home> Publications > QUEST >QUEST Vol 6 No 6 December 1999

ADOPTING A CHILD WITH MD

by Carol Sowell

Where did you come from, baby dear? Out of the everywhere into here.
— George McDonald

The Hansens hoped to adopt a "healthy newborn"... The Glattsteins went the "foreign adoption" route... The LaFonds opened their home to "hard-to-place" children... DeAnn Glenn took in a foster child and made him her son...

In each of these families, an adopted child is also one of "Jerry's kids." The adoptive parents face the same emotional stresses and practical challenges that confront anyone whose child has a neuromuscular disease — and sometimes a few more.

Michael was 5 weeks old when he was placed in the home of Steve and Bobbie Hansen of Eagan, Minn., already adoptive parents of a healthy girl. The new baby seemed strong, but he showed poor reflexes during a medical checkup at 10 months. Further examination led to a diagnosis of spinal muscular atrophy.

[photo: Hansen family]

The Hansens' adoption hadn't yet been legally finalized, and Bobbie's first reaction was fear that they might not be allowed to keep their son. "I said, 'They can't take him away from us, can they?' By that time you love him."

Then, Bobbie recalls, "Our best friend said, 'Well, you know, you could turn him back in. It's not what you wanted.' And I looked at him and said, 'what?' with total shock. He said, 'I hoped I knew you long enough that that was the answer I would get.'"

Michael's diagnosis didn't deter the Hansens from adopting him, but it threw them into a world of new information and fears. They were advised to complete all his diagnostic tests and get a full medical report on the record before the adoption was made final, because adopting a child with a disability might entitle them to some financial benefits.

Michael was given a poor prognosis and his condition declined rapidly.

"His abilities and his condition deteriorated so quickly after the diagnosis that I remember it as kind of a black hole," Bobbie says. "There is not a whole lot that I remember about it. It would be a miracle if I could get through a day without crying. It was just awful."

In the midst of their emotional turmoil, the Hansens realized that SMA was genetic and that Michael's birth parents should be informed. Their adoption was closed, meaning they had no direct contact with the unmarried woman who'd given her baby up for adoption, but they notified the adoption agency. The agency was able to alert the birth mother that she and the father were likely to be SMA carriers.

As they came to terms with their son's medical condition, the Hansens prepared to present their final petition for adoption. During the court proceedings, the judge asked them whether they knew what they were getting into by becoming Michael's parents, and if they were willing to accept everything that might occur.

Bobbie's response: "Of course I don't, and of course I will." The adoption was granted.

Michael, now 14, is "a very bright and neat kid," his mother says. He served as MDA's Minnesota Goodwill Ambassador this year.


IT HASN'T BEEN FINANCIALLY SUCCESSFUL BUT WE'VE HAD A GREAT TIME...

The LaFond family of Bogota, N.J., is used to being stared at. Perhaps it's because some of John and Therese LaFond's children are white, some are black and some are of mixed race. Or it could be because some of their children have physical disabilities and one son uses a wheelchair.

[photo: LaFond family at a recent wedding]

Or maybe it's because there are 14 of them. The family numbers 16 with parents, 19 with grandchildren, over 20 with sons-in-law ... at last count.

The LaFonds had eight children but eight wasn't enough. When they decided to adopt, they were drawn to "special needs" kids, the children who used to be called "unadoptable" because they were older or had disabilities or other problems. That made them all the more appealing to the LaFonds.

All of the LaFonds' six adopted children have disabilities, ranging from missing bones to fetal alcohol syndrome. They found some of the children through the state's adoption program, and Anthony was placed with them through Spaulding for Children, considered the nation's first agency helping "hard-to-place" children find homes.

At 4 years old, Anthony (Tony) weighed 24 pounds and couldn't walk. His congenital muscular dystrophy was apparently more than his birth mother could handle, so he became available for adoption. Doctors predicted he might live to age 6.

Today, Tony's 18 and finishing high school. His mother brags about his keen sense of humor, his intelligence and his good attitude.

"With Tony, what I find interesting is that he has never once complained about his disability, and he is severely disabled. He can't even brush his teeth himself," Therese says. "One time when he was about 10 we thought we might get a handicap sticker for our car just so we could park closer for Tony. And Tony said to us, 'Who in the family is handicapped?'"

To people who find her family remarkable, Therese says, "It didn't seem hard, though to be truthful there were some hard times when they were sick."

But for the most part, "We have fun. We've made some wonderful acquaintances. There's been some disappointments, but I would say that what we have gotten out of it is much greater than we had anticipated. We went into it thinking, well, it would be a nice thing to do. We haven't had any catastrophic problems, just the regular problems."

Those "regular problems" include multiple surgeries for some of the children and negative community reaction to the racial mix of the household. Therese's fought with the school system, which placed Tony with mentally disabled children for a few years, causing him to lose some ground in his education. To accommodate the growing family, they simply built in more bunk beds and everybody pitched in to help.

That "no big deal" attitude and sense of humor seem to work for the whole family. With the ninth child starting college this year, Therese says, "Our children are really happy. They are successful and doing well." Therese says her children are surprised by things that other people consider problems. And she believes they're more tolerant, understand-ing and patient because of growing up in a large, diverse family.

One daughter called her mother from college and said, "My family is wonderful because nobody has anything to talk about in psychology class, and any time there is a problem to discuss I can bring up one of my brothers or sisters. I am getting such a good grade."

Besides having an obvious love of children, Mom sees her huge family as "sort of energizing. I find children fascinating. I like their frankness, and if you look awful they will come right out and tell you. I enjoy being with children. My husband enjoys going to work."

Could the urge to adopt be hereditary? Or is it due to environmental influence? Whatever the answer, some of the LaFond children have echoed their parents' attitude: "They said, why not? If we all took one child, a child who needs you, it's no big deal."

One daughter who has two birth children has also adopted an infant. So far.

Story continues on next screen > >

 
     
     
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