< < Story continued from previous screen

Toddlers on the Run

As toddlers grow and want more independence, darting off, hiding or running away from caregivers becomes a delightful game — from the child's perspective.

A portable crib allows greater access to Mikaela for both Marshall and Karole McFarlane.

For a parent with limited mobility, it's a nightmare.

"He knows that because I can't get up and chase after him, he can hide in corners or behind the couch," Walters said of Travis. "He knows where the hiding spots from Mommy are, and that really makes it difficult."

Rogers suggests using a security harness. Many of these are available, including some that can be modified to be more easily put on the child.

While some may scoff at the idea of a "baby on a leash," a harness gives a child room to explore but still provides necessary limitations and boundaries that a child actually appreciates, Rogers said. "The kids are safer and happier than when you're trying to hold their hand."

But first, try not to get involved in a baby-chasing game to begin with.

"You have to start off and not ever play the chase game with them. You have to get them to chase you," Rogers said. Similar thinking can apply in kicking-and-screaming temper tantrums that cause kids to stop dead in their tracks. If the parent moves away, the child will likely follow and the situation may be diffused.

This different approach can even foster gentler parenting, Rogers said.

"If you can't pick the child up and move him, then you move. You have to be creative, and I think when you're creative and can do it, it can work really better because you're not trying to use brute force."

Ready to Buy

The MacFarlanes invented their own way to allow Karole to tote little Mikaela: a baby backpack attached to Karole's wheelchair.

The notion that necessity is the mother of invention is especially true in parenting. For the MacFarlanes, invention has meant finding ways to use easy-to-find, commercial baby items for everyday tasks.

Karole uses a lightweight and inexpensive "umbrella" stroller (one that folds and is carried by a curved handle) for pushing Mikaela around. Since it's low to the ground, Mikaela can easily get into it.

"She loves to climb into it. She knows it's her chair, and that's what she calls it," Karole said. "The other stroller we have for her is heavier and she can't climb into it, and I couldn't push it around real well."

For bedtime gear, many parents who use wheelchairs end up building or modifying cribs to add a gate that swings like a cupboard door, or slides open to the side rather than up and down. The Idea Book has several crib designs that don't block the parent's access to the baby.

However, the MacFarlanes purchased a portable crib, sometimes called a pack-and-play, with a bassinet attachment they used when the baby was young. The height of the unit allows Karole to reach down to tend to Mikaela, plus it was relatively inexpensive. Most brands sell for about $80 to $100, much less than a conventional or adapted crib.

The MacFarlanes also use a commercial "play yard." The device cordons off a large area that the parents fill with toys to keep Mikaela occupied when Karole is taking care of her.

"I'll watch her for an hour or two by myself, and she's OK," Karole said.

Although nobody has invented a way to prevent the mind-boggling messes that come with toddlers learning to feed themselves, at least many high chairs on the market have adjustable heights and are wheelchair accessible. TLG therapists have created high chairs with trays that don't have to be detached or that can be operated with one hand.

Nursing pillows can provide crucial support for a mother who breastfeeds her baby, or help a parent with limited movement cuddle and hold the baby close. Karole MacFarlane also found that a standard wheelchair tray doubled as a terrific surface for supporting the baby while she breastfed.

Still, getting product manufacturers to recognize that more accessible baby equipment would benefit many consumers, not just parents with disabilities, is a tall task, said Megan Kirshbaum, TLG's founder and executive director.

"We're working on it because we get very frustrated by the lack of equipment on the market across the country," Kirshbaum said. In fact, TLG professionals hope to get a grant to begin commercializing their own adapted inventions, she said.

Grandparents, senior citizens and people with back problems, carpal tunnel syndrome and many other physical constraints would find such equipment ideal for caring for children, she said.

Finding Help, Building a Support Network

If you need adapted equipment, you may find that community organizations, church groups and volunteer agencies can provide personnel or even funding for a special project like building or adapting a crib. Friends and neighbors may have skills such as woodworking that could come in handy.

If you live in a town with a university or college, consider enlisting an engineering student to create solutions for a school project, Rogers suggested.

TLG strives to find help for people in any part of the country. Often, the agency will refer parents to a local occupational therapist, whose job it is to create solutions for someone with physical limitations, said Brown-Booker.

Walters said she found much help — both financial and technical — from government agencies, which also connected her with organizations and volunteers she otherwise might not have found. She started with one phone call, to the Department of Human Services in her county.

"There's a lot out there that I didn't think was there. It's just a matter of finding them," Walters said. "At first, I thought we were going to have to go through all this by ourselves, all alone. I didn't think the government would help like that."

Underlying the daily challenges of child rearing for both Walters and the MacFarlanes were feelings of isolation, as well as dealing with the prejudices and reactions of those who think people with disabilities shouldn't have babies in the first place.

Limitations and challenges have caused plenty of unexpected stress for both families. Both Walters and Karole MacFarlane believe that's affected their overall health. But networking has helped both families cope.

For Walters, communicating via the Internet with other parents dealing with similar challenges has helped her to feel less alone.

"The Internet helped a lot. It's nice to have someone to talk to that actually knows, in an way, what you're going through," Walters said.

TLG is currently building a parent-to-parent network to help parents with disabilities develop a support system, Brown-Booker said. The network will include an Internet bulletin board, she said.

Plan, Research and Enjoy

Whether a baby is on the way, or is a possibility in your future, experts and parents recommend doing research and learning as much as possible before the baby arrives.

TLG has a free newsletter and many other publications and bibliographies on hand for parents. Brown-Booker said prospective parents should "try and go in with their eyes open as much as possible."

And be ready to have the time of your life, according to families in the thick of parenting.

"It's a lot more stressful than I had planned, but it's also wonderful," Walters said. "I wouldn't change a thing."

Ditto that for the MacFarlanes.

"It's that unconditional love. I don't think that people understand what that is until they have a baby. It's almost like when things happen to her, they're happening to me," Karole said.

And, the MacFarlanes agree, it only takes one word from little Mikaela to turn Marshall to mush: "Daaaa-dy!" 

RESOURCES

Through the Looking Glass is the first National Resource Center for Parents with Disabilities. Services include a newsletter, publications, parent-to-parent network, training for parents and professionals, and consultations on issues including custody, adoption, adaptive parenting equipment, pregnancy and birthing.

Call (800) 644-2666; e-mail TLG@lookingglass.org; Web site, www.lookingglass.org.

Baby Products and Catalogs

• Baby B'Air harness for airline travel, (800) 417-5228, www.babybair.com
  
  
• One Step Ahead, baby products catalog, (800) 274-8440, www.onestepahead.com
  
  
• Right Start Catalog, (800) 548-8531, www.rightstart.com
  
  
• Sara's Ride, Natural Baby Catalog, (800) 388-BABY, www.kidsstuff.com
  
  

Internet Resources

• Diana Michelle's Homepage, http://www.disabledparents.net
  Trish, who has cerebral palsy, and her husband, John, offer a resource site for parents with disabilities, including details about raising their daughter, Diana Michelle.
  
  
  
• Parenting with a Disability message board, www.parentsplace.com