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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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Quest Vol. 15, No.3

Moving Out: Operation Get a Life

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

THE BIRTH OF A FAMILY
Adoption Within Reach for Those With Neuromuscular Diseases

by Jan Blaustone

Before I got married, I had six theories about bringing up children; now, I have six children and no theories.
—John Wilmot, Earl of Rochester

Whether you have biological children, adopt or both — this quote holds plenty of water. Parenting is not a job for the squeamish. Parenting is earmarked for those of strong will and conviction, enduring love and a willingness to learn from another soul as well as to lead.

I felt that way 12 years ago when I learned I had limb-girdle muscular dystrophy shortly after miscarrying my only pregnancy. Now that our only child, adopted at 6 weeks, is 9 years old, I feel that way even more.

[photo: Jan, Lee and Michael Blaustone]

Just the other day my husband, Michael, reminded me that we can learn to become more tolerant of each other by following our son's example. Naturally, we try to set the example, but every so often I agree with Michael, and this was one of those moments.

Michael said, "No matter how badly I mess up as a father, he consistently forgives me and welcomes me back in his arms and good graces." Parenting is an enormous responsibility but the rewards are truly endless, as was this simple lesson from our son.

How does one get from Point A (contemplating adoption) to Point B (becoming an adoptive parent), particularly when the prospective mom or dad or both have a progressive disorder such as a neuromuscular disease? With patience. Determination. And attitude. If you're mindful of these strong points, you can become an adoptive parent, too.


Challenging But Not Impossible

Nine months after Teri and Danny Parks were married in 1996, she was found to have multiple sclerosis. Danny wasn't anxious to have children, but Teri felt it was her destiny and she wasn't about to let MS stop her.

"I've always felt that someday I would become a mother," Teri said, "like I was born with that special ability to parent. My MS would make the job more challenging but it wouldn't interfere with my ability to be a good parent. That I was sure of."

With some indications of infertility as well, the Gallatin, Tenn., couple turned to fostering with hopes of an eventual adoption. They began their journey as participants in a Tennessee Department of Children's Services program called M.A.P.P. (Model Approach to Partnerships in Parenting), a state training program for people interested in becoming foster parents or adopting.

[photo: The Parks Family]

Teri and Danny graduated from the 10-day program feeling positive about the experience. Teri said, "It prepared me very well about the emotional challenges, the behavioral problems that can and inevitably will arise after what they call the 'honeymoon' period. The tantrums and acting out began like clockwork about two weeks after the boys moved in."

"The boys" are 5-year-old twins Keith and Kenny, whom the Parkses have adopted. The children were in their birth grandparents' care after being abused and badly neglected by their birth mother, who had three other children. During their first year of life, they'd been hospitalized for malnutrition and dehydration.

"The boys were exposed to hard drugs, X-rated movies and prostitution on a daily basis and never had any kind of stability or structure in their lives," Teri said. "It's a miracle they have responded as well as they have."


Independent or Agency Adoption? Open or Closed?

When they were halfway through the M.A.P.P. program, the Parkses became acquainted with Keith and Kenny through a mutual friend. After spending time with the twins, they abandoned their initial intention of fostering and hired an attorney to handle an independent, "open" adoption.

An independent adoption is one in which no adoption agency is involved; through private negotiations, birth parents sign over their legal rights to the adoptive parents. Independent adoption is legal in all but a few states.

Do consider, however, that the birth mother (and sometimes the father) in an independent adoption may have a say-so in the selection of adoptive parents, based on descriptions if not actual meetings. If she's prejudiced about individuals with disabilities, meeting her could prove detrimental to your adoption hopes.

In open adoptions, adoptive and birth parents know each other's identities and often meet. This can be an advantage to those who adopt. The twins' birth mother gave the Parkses plenty of insight into their behavioral problems and information on her pregnancy and medical history.

The woman has chosen not to maintain a relationship with the children. But in some cases of open adoption, birth parents may ask for continued contact. These details, once all parties agree, are spelled out in a legal contract.

Closed adoptions, in which birth and adoptive parents don't know each other's identities, remain popular with most public agencies. Their anonymity offers a fresh start for all involved. Some states offer sealed records that can be opened when petitioned by the adopted child as an adult, but consent of the birth parent(s) is generally required prior to any release of information.


State Adoptions & Special Needs

Instead of an independent adoption, some parents go through an agency, either private or public. Children placed for adoption by the state's agency are already legally free for adoption because their birth parents have died or their legal rights have been terminated because of abandonment or some other reason.

Besides not having to reach a legal agreement with birth parents, those who go the state adoption route find it faster and much less expensive than independent adoption or a private agency. The only costs are the legal filing fees. In private adoptions, there are usually agency fees, nonrefundable application fees and the birth mother's medical expenses.

Requirements to adopt through the state are also much less restrictive. In Tennessee's program, those who want to be considered as adoptive parents must be over 21 and able to meet the financial needs of their present family (financial assistance is available for the special needs of adopted children). There are no limits on age, marital status or disability status.

Children up to age 18 are available for adoption through state programs, with most over 5 years old. The majority of these youngsters fall into the special needs category, which includes children of all ages who are African-American or of mixed race; Caucasian kids over age 9; sibling groups who need to be adopted together; or children of any age who require extra developmental, emotional or physical care.

Very few "healthy white newborns" are available through state adoption and a decreasing number through private agencies. Most people seeking this kind of child use independent adoption.

The process of deciding on placement of a child is initiated by the child's adoption counselor, who reads the home studies of eligible families. When a family is selected, the prospective parents meet with the counselor and are presented with complete information about the child, including nonidentifying background information, past experiences, behavior patterns, talents and interests. The family sees pictures or videotapes of the child and may have the opportunity to talk with the foster parents or others who know the child well.

Some states offer a computerized database of adoptable children as an additional tool through which prospective families can be linked with specific criteria in mind. In Tennessee, this system is called REACT. The REACT network can filter through adoptable children and match each to a family best suited to the child's needs. Of course, parenting never comes with guarantees but eliminating as much risk as possible in the life of a child is fundamental.

Many states, including Tennessee, offer ongoing support after the six-to-12-month adoption process becomes final. Post-adoption services at little or no charge include support groups and special events with other adoptive families; family counseling for as long as you need it; and respite care to give much needed temporary breaks.

Mounds of paperwork are still required no matter what type of agency or adoption process is used. On top of the documentation, record checks and verifications, the process also requires interviews, home study visits, court petitions and hearings.

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