Normal Is What You Make It

A neuromuscular disease is no match for a determined parent's will to love, guide and nurture a child

by Tara Wood on December 1, 2001 - 11:48am

What makes a good parent?

Most people would agree that good parents love their children unconditionally, make their children's needs a priority, and provide a home filled with love, security and even some fun — all requirements that have nothing to do with physical ability, strength or mobility.

Yet, parents who have disabilities often find themselves grappling with a society that questions their ability to parent from the get-go.

People with neuromuscular diseases who have experienced the trials of parenting can illuminate the emotional and psychological issues they've faced and provide suggestions and tools for coping.

Worries from the very beginning

Intense emotional strife can hit parents with disabilities before a child is born or even conceived.

Talisa Thomas-Hall of Alexandria, Va., was peppered with negative pressure and doubts from well-meaning doctors before her daughter was born 18 years ago.

At the time, she was 17, was seven months pregnant and had just learned that it was limb-girdle muscular dystrophy that had been causing her to fall and have other problems. Doctors gave her a grim prognosis and encouraged her to give up her child for adoption.

But Thomas-Hall, now 36, said giving up her daughter simply wasn't an option. Instead, she seized parenting as an incentive to get her life on track.

"To me, it was this new responsibility and probably the only chance that I would get to have this responsibility through a natural way. I had to do the best I could and I had to just accept the responsibility and move forward with it," Thomas-Hall said.

Today she's a senior executive with the College and University Professional Association for Human Resources. Her daughter, Ingrid-Lynelle Hall, is a college freshman.

That's not to say Thomas-Hall's experience as a single parent was easy, yet the harsh judgment passed on her potential ability to be a mother isn't unique, according to mental health experts and research.

Through the Looking Glass, a Berkeley, Calif., organization that serves as a national resource center for parents with disabilities, published a report in 1997 that surveyed 1,200 parents with disabilities.

The survey found that 42 percent of parents with disabilities reported facing "attitudinal barriers," including discrimination (32 percent), pressure to have a tubal ligation (14 percent) and pressure to have an abortion (13 percent).

Additionally, 15 percent of parents surveyed reported attempts to take their children away, and 8 percent reported attitudinal barriers that interfered with or prevented their being able to adopt.

Psychology professor and family therapist Rhoda Olkin said her students have found in their research that such intrusion seems to know no limits.

"Even fairly well-off, well-educated parents with disabilities are finding active interference in their right to be parents," said Olkin, who is also a mother with a disability, a Through the Looking Glass staff member, and a teacher in the clinical psychology program at the California School of Professional Psychology in San Francisco.

Choices to make

The good news is that some people receive staunch support in their quests to become parents, despite the presence of a disease or disability.

Jeff Lester of Ellisville, Mo., found himself struggling with some tough personal choices when he received a diagnosis of amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease) in 1993. The disease usually progresses rapidly with three-to-five-year average survival.

Lester said he initially worried about how the diagnosis would affect his relationship with his girlfriend, Lisa, but the couple decided to forge ahead despite the challenges ALS could present. A week before they married in 1994, they received an unexpected wedding gift: Lisa was pregnant.

"We had been discussing having children and had decided we would have them, but in a year. God has a great way of making things work out, because we realized later that, had we waited, we would have had a tougher time deciding because I was having more [health] problems," Lester said.

Lester, 35, said he received nothing but support from his family about becoming a parent. His daughter, Kelsey, is now in first grade.

"My family was thrilled because if ALS ever beats me, they would have my child to still love, and Lisa's parents were thrilled because it was their first grandchild," he said.

Lester said he hasn't experienced negative pressures about having a child. Even if he had, "it would not have made a difference because I had already decided that I would live my life as if I didn't have ALS."

Michael and Kelly Buonaccorsi with son, Connor
Michael, Connor and Kelly Buonaccorsi

Once a decision to have a child is made, many parents with neuromuscular diseases have to contemplate how they'll accomplish the physically demanding tasks of parenting a young child, such as diapering and holding.

Kelly and Michael Buonaccorsi knew that Kelly's spinal muscular atrophy would prevent her from doing parenting tasks that required lifting.

The Warwick, R.I., couple share parenting duties, with Kelly feeding and Michael changing and dressing their 10-month-old son, Connor. So far, the balance is working, and both parents also have full-time jobs.

"Would I like to pick him up more and do all that? Yes," said Buonaccorsi, who uses a power wheelchair. "But I do everything that I possibly can do, and what I can't do, like when my husband is changing him or getting him dressed and I'm not doing anything else, I'm there."

Leaving a legacy

When there's a genetic disease in the family, the decision to have children can be further complicated.

While the Buonaccorsis did seek genetic counseling before Kelly became pregnant, and found that Michael isn't a carrier for SMA, she said she had little hesitation about becoming a parent.

"I think it was because my husband and I were just so positive about it, and to me, this wasn't a big thing. He and I both wanted to be parents, and that was what we were going to do," Kelly Buonaccorsi said.

Charcot-Marie-Tooth disease runs in Marianne DeStefano-Hill's family (her mother and brother also have it), yet her own experience in living with the disease wasn't a deterrent to having children.

Shawn and Nick Hill with Marianne DeStefano-Hill playing a game
Shawn and Nick Hill with Marianne DeStefano-Hill

DeStefano-Hill, who walks with the assistance of leg braces, lives in Salem, Ore., with her sons Nick, 11, and Shawn, 5. Nick received a diagnosis of CMT last summer, and Shawn hasn't been tested for it.

"I knew that I had the disease and I knew that it was genetic, and that there was a 50-50 chance of passing it on to my children. I figured, well, my life hasn't been that bad, my mom and my brother's life has not been that bad, and there's medical advances all the time," she said. "We just pray that we're not affected that badly, and that our children won't be either."

DeStefano-Hill, a stay-at-home mom, said she concentrates on setting a good example for her sons instead of letting guilt get the best of her.

"You want to have a positive attitude and feel like, "Hey, the world is yours. Go for it,'" she said.

DeStefano-Hill's attitude echoes that of many other parents with disabilities, Olkin says.

"I think some parents say to themselves, "Who better to raise such a child than me?'" said Olkin, who had polio as a baby, and is the mother of two. "At the same time, on the flip side there is that guilt of that feeling of responsibility. Parents also know ... that it can be painful to grow up as a child with a disability, and they have to re-experience that through the child."

Guilt, scrutiny and the green-eyed monster

Guilt can arise in many other aspects of parenting, particularly when parents with disabilities can't do what others are able to do.

Thomas-Hall experienced pangs of guilt at not providing her daughter with a sibling, or not being able to turn a jump rope. But focusing on her abilities helped her to cope with such feelings, she said.

"There were times when I couldn't participate to the level that I would have wanted to in some of her school activities. But the more I became aware of how to live with my limitations, the more I began to realize I can get involved and there are things I can do," Thomas-Hall said. Her parenting activities included teaching her daughter to swim and being a Brownie troop leader.

For Lester, guilt sometimes blends into envy since his wife not only has to, but can do more with their daughter.

"I feel guilty about what my disease causes her to do for me because I cannot take care of myself. I am envious because I want to be able to coach Kelsey's team, play with Kelsey in an amusement park, teach her about nature the way my dad did to me," Lester said. "And the hardest thing to do is hug my daughter."

Olkin said jealousy can sometimes creep into family life in ways many hesitate to talk about.

"Parents are so ashamed to admit this, but jealousy of their child. If you grew up with a disability and you have a beautiful daughter who goes to middle school and is very popular and goes to the dances, it's very possible to feel some jealousy of your child," Olkin said.

Sometimes verbalizing these feelings can take away their sting, she said.

"If you have a marriage that can tolerate this kind of discussion, if you can admit it to each other, that helps," she said.

Olkin said that parents' emotional challenges can change as children grow. With young kids, it's the physical demands of child rearing. Once the kids reach school age, parents face a whole new list of problems — inaccessibility of the school, transportation, not having the right supports, not having educated teachers and so on.

"Transportation often becomes a number-one concern of parents with disabilities. These are the car pool years. You're in the car all the time, and if you can't drive, it's very difficult," Olkin said.

Another challenge: Many parents with disabilities feel they have to hold themselves to a higher standard than most.

DeStefano-Hill said that, because she wears leg braces, walks differently and tires easily, she feels she's open to more intense public scrutiny.

"I get afraid that if I'm not a good parent, what's going to happen? Are my kids going to be taken away from me or am I going to be proven unfit?" DeStefano-Hill said. She often finds herself asking, "Is my house clean? Are the boys wearing appropriate clothing geared to the weather? Are they getting enough to eat?"

Olkin said DeStefano-Hill's fears aren't uncommon. Unfortunately they "come from a sense of reality," as statistics and some custody cases show.

A rare, serious challenge that some parents with disabilities face is abuse — from their teenage children.

"I'm not just talking about hitting, but things that really render a parent helpless," Olkin said.

"For example, a mother in a wheelchair was walking with her teenage son, they were having a huge argument, and the son took the batteries out of the wheelchair and left."

This type of situation begs for professional intervention, such as family counseling.

Finding ways to have fun together

Parents frequently make creative efforts not to let their disabilities disrupt their children's lifestyles.

Thomas-Hall said that when her daughter was a toddler, the two would spend hours at a time reading books. As a result, her daughter was reading two- and three-letter words by age 3, and became a sensitive and articulate young woman.

"The important thing from my point of view is that she not lack anything because of my limitations," Thomas-Hall said. "It was important that her world appear normal, but I truly believe that a child doesn't know what normal is, and whatever you give them, that is what will be normal."

DeStefano-Hill is separated from her husband, but the boys' father takes them skiing and joins them in other physical activities. Their activities with their mother include crafts, playing board games, baking cookies and having picnics, she said.

"They've never known any other mother, so for them it's just normal," DeStefano-Hill said. "I don't really ever hear them complaining, "So-and-so can do this, why can't we?'"

Shawn Hill helping mom Marriane
5-year-old Shawn Hill helps mom Marianne with chores

Brian Neese, who has the familial form of ALS, sees his two daughters, ages 7 and 10, on holidays, in summer and in other visitations. Despite starting to experience ALS symptoms a year ago — his voice is affected and he uses a cane when he walks — Neese tries to make the most of his daughters' visits.

Neese, 33, lives in Dallas and has taken his girls to museums, sporting events and malls. His older daughter especially liked going to an amusement park with her dad because the family could "use the wheelchair ramps and didn't have to wait in line," and got the best seats on rides.

And, they enjoy "something as simple as spending an entire Saturday playing with Barbie dolls and having a Barbie and Ken wedding complete with them taking pictures," Neese said.

Olkin finds that families seem to develop a "disability pace or rhythm" that can spawn special times and communication. For instance, a mother who is blind might walk with her son and use that time to talk about their day.

"If it takes you 25 minutes to diaper your baby, that's face-to-face contact," she said.

Olkin also talks about a disability having a "good fit" in some families, and uses her own life as an example.

"I don't do sports things or I couldn't take the kids to the park. But I do a lot of art projects, and it happens that both of my children are very artistic," Olkin said. "So that fit between what I could do and what they liked helped me pull something out of them that might not have been discovered otherwise."

A bond like no other

Parents with disabilities often talk about the unusually strong relationships they form with their children.

Thomas-Hall said her bond with her daughter was forged when she was basically "homebound" for two years during her daughter's infancy.

"I think from a very young age she was always very aware that if I was carrying her, part of the responsibility was mine, part of it was hers — to hang on," Thomas-Hall said.

When Ingrid-Lynelle was 2, Thomas-Hall could trust the child to come to her when she called, even when she was at a playground next to their apartment.

"I would call her from time to time and she would come up the hill immediately. After a while, she would come up to me and say, "Mommy, do you need anything?'"

Neese said that since his ALS symptoms began, his relationship with his daughters has changed.

"I have found that my girls have become more attentive and respectful since my health started to decline. The biggest challenge is getting them to listen, especially when my voice started to become weaker. They soon discovered that I am not able to yell or call for them so they have become adjusted to not wandering away," Neese said.

Olkin hears about many such special relationships.

"The child seems to get some perspective on what's important and what's really serious," Olkin said.

Also, "They understand the value of family and friends. They see this over and over again, how strangers can be cruel and it's your family that helps you with that," Olkin said.

Coping tools

Some parents may be relieved to learn that some of the emotional challenges they face aren't unique to disability. In fact, many parenting difficulties are normal phase-of-life or family issues.

"I think every parent comes equipped with a guilt button, and when you're disabled, it's easy to feel guilty about disability-related things and to blame the disability, when in fact, it has nothing to do with that," Olkin said.

She cited a poignant example from her own life: When her kids reached middle school, they became embarrassed by her.

"When my son didn't want to go on an outing with me that we had gone to every year, I thought, OK, it's no longer cool to be seen with a mom with a disability. In fact, it was no longer cool to be seen with a mom," Olkin said.

A key to coping with parenting challenges is talking about them with others in similar situations.

Find or create a community of parents, whether it's an MDA support group, an Internet chat group, church or people you meet, say, at the doctor's office.

"One of the key concerns is that they have to do this in such isolation. They often don't know other parents with disabilities," Olkin said.

Parents with disabilities are subject to the general range of problems that all parents can have — many of which are treatable — like depression or anxiety disorders. (See "Signs for Getting Help.")

Doctors, therapists and parents should again be careful not to overascribe such problems to disability, Olkin said.

"I think one of the mistakes clinicians make is they say, 'Well, of course, you're depressed. You're struggling as a parent with a disability. It's physically hard, you're mourning the loss of the body you don't have, etc., etc.,' when in fact what you might have is a treatable depression," Olkin said.

Olkin also stresses that it's up to the parent to start and maintain a conversation with the child about the disability. Children have different levels of understanding of disability at different ages.

Tips from the trenches

There's nothing like the advice of someone who's "been there," so here are a few nuggets shared by parents with hard-won experience:

"I don't think that any woman should think that they can't [have a baby] or shouldn't or it's not allowed," Buonaccorsi said. "But I think that they should make sure they have good support systems in place because it is a very difficult job to do."

Thomas-Hall also recommended exposing children to situations that show children that their parents aren't the only people who have disabilities.

Plus, be able to ask for help, and to thoroughly investigate community resources that get your kids involved in activities.

And never take no for an answer.

"I had to condition myself that, unless I am flat up against a brick wall, nothing is impossible. I can find a way to do it," she said.

While some of the challenges of parenting with a disability can sound quite daunting, none of the parents interviewed said they have any regrets.

"In retrospect, it was something I wouldn't trade for the world," Thomas-Hall said about her parenting experience. "But going through it, I would tell someone to expect these feelings, and move on."

"The joy of having a child, at least in my case, far outweighs the downside of having a disability," DeStefano-Hill said.

"I know now that I have no regrets or doubts about having Kelsey because she is the best thing that has happened in our lives," Lester said.

And for Thomas-Hall, who has seen her daughter blossom into an adult, it's time for reflection.

"The whole thing was such an experience for me," she said. "I'm just now taking a breather and being able to look back and say, 'Oh shucks, we did it!' We actually did it, and it's amazing!"



Through the Looking Glass
(800) 644-2666
TLG offers clinical and supportive services, training and research serving families in which one or more members has a disability or medical issue.
Services include the National Parent-to-Parent Network, which connects parents, or those who are considering becoming parents, with others who may have shared similar experiences or faced common barriers as parents with disabilities.

What Psychotherapists Should Know About Disability, by Rhoda Olkin, 1999, 368 pages, Guilford Press
(800) 365-7006
Includes a chapter on families and a section on parents.

Bigger Than the Sky: Disabled Women on Parenting, edited by Michele Wates and Rowen Jade, 1999, 202 pages, The Women's Press Ltd., London

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