Help for Families with Special Needs
An interview with Louise Bruce about respite care.
A Second Pair of Hands
Early on, Louise Bruce, a "doer," didn't see that having a child with special needs meant having obstacles, and so she kept "bulldozing" ahead, staying active as she always had been. At some point she realized that having "a second pair of hands" would make her life easier. Louise Bruce, then the mother of three beautiful children, two of whom were born with cerebral palsy, limited vision and speech, and the corresponding delays, was trying to figure out just how to make it all come together.
Having this second pair of hands at the end of the day, when Bruce was most exhausted, became especially helpful. She found different kinds of caregivers for different kinds of respite -- college or high school students who could entertain the children while she was home, and an older, experienced nanny who could care for the family while she and her husband went away on vacation.
Assembling a team of caregivers rather than relying on one caregiver, is essential, Bruce believes. That way, when one caregiver is unavailable, others can step in. Respite care became an integral part of her family's routine, enabling them to function better and make the most out of life. "We traveled and camped with wheelchairs," said Bruce, "and we had to have a third person to get from point A to point B. At one time, two of my kids had severe seizure disorders and we needed someone around who understood what was needed. We also needed someone who could tend to whoever needed it, and enable us to pay some attention to our healthy child, as well as to each other."
Bruce attributes the success of her marriage to respite care, which enabled them to have alone time together -- whether for an evening or a week away. She also believes that the respite care helped her kids. "Parents of kids with special needs are in danger of becoming constant caretakers," says Bruce. "Our kids need us to be their parents, and respite care lets this happen."
The Value of Variety
"Our kids need to have a variety of caregivers," Bruce believes. "Having different relationships with therapists, teachers, doctors and aides is so beneficial," she adds. "Each person sees different gifts in our children, and brings them out, in different ways." This "helps our children to realize their fullest potential and also helps them to develop socially."
Often, parents of kids with special needs are so busy meeting the child's needs from moment to moment that they don't have time to step back and realize the toll this is taking on them. While they love their kids and have much joy in them, it can also be draining. Building in some time for oneself, she said, can enable the caregiver to restore vitality and have more to give.
In contrast to parents of healthy kids who find that any difficult stage will end and their child will change, many parents whose children have disabilities will be dealing with the same situation with no end in sight. The child has difficulties that won't be outgrown, from which the parent will need a respite.
The LaChris Connection
Recognizing how critical respite care has been for them, Louise and her husband Mike created The LaChris Connection (named in memory of two of her children, Laura and Chris), which is dedicated to "relieving families of the time-consuming searches for the resources needed by families of children with disabilities." The TLC foundation "lightens the load" by providing easy access to adventures, respite and information about adaptive sports and camps for children, parent getaways, accessible family vacations, specialized child care resources, support groups and more. It offers parents the precious opportunity to find some balance in their lives, and children the opportunity to have variety. For those families who have not yet considered respite care, Bruce suggests the following are ways in which it can help:
- "I need a second set of hands." The caregiver stays at home along with the parent, rather than replacing him or her, and helps feed and bathe the children, clean up the kitchen, etc.
- "Come take my kids for a walk." While the caregiver takes the child out, the parent is free to do things like take a shower, have a drink, do laundry, turn on a soap opera.
- "I need someone at home with my other kids, while I take one to the hospital." Have a caregiver tend to your other child while you are at the hospital or doctor's office with a sick child.
- "My hubby and I need some time together." Have the caregiver at home with the child while the parent goes out, whether to shop at the grocery store, get a massage, or have dinner with one's spouse. For this to work, the caregiver must know the child's preferences for entertainment and food, including how to prepare food for and feed the child.
- "Come camping with us." The caregiver takes on some of the parent's custodial tasks while on vacation with the family. These could include: feeding, dressing, and/or meeting other needs of the child with special needs so the parent can meet the healthy child's needs.
Parent's Responsibility to Caregivers
Parents, Bruce says, have a responsibility to educate caregivers so they can better undersatnd their child's special needs.
- "We need to start with our child's personality -- feisty, devilish, irascible, whatever -- and then move to the limitations." This helps the caregiver understand the need to do the same. Parents, she adds, must convey their level of excitement about their children, rather than just exhaustion. This will affect the attitude the caregiver takes.
- "We must teach our caregivers to always put the person before the diagnosis," Bruce says. "We refer to 'children with special needs' as opposed to 'special-needs children.' A child is more than her diagnosis."
- While parents want caregivers to fall in love with their child, as they have done, they must realize that the parent got to know the child gradually, day by day as the child's personality unfolded. They can't expect caregivers to fall in love overnight, Bruce says.
- "We have to balance seeing our children's greatest potential and fighting for that, against accepting them with their limitations. We must embrace our hope for the best, but try to accept reality. We constantly negotiate that delicate balance and want caregivers to do the same."
Caregiver's Responsibility to the Family
What should families expect from caregivers?
- The caregiver must respect the child and family, and embrace, rather than pity, them, says Bruce.
- The goal is to understand, to get to know, the child.
- A caregiver should appreciate the child's uniqueness and strengths. She should ask, "What does your child enjoy?" (not: "Can your child to this?"). "What are some of your favorite ways that your child communicates with you?" (not: "How can you communicate?"). "What do you wish that people understand about your child?" (not try to define or put the child in a box).
- "Do you like to treasure hunt?" is a good question for a potential caregiver, says Bruce. It gets to the heart of what it means to work with children with special needs.
Steps a Parent Must Take in Order to Accept Respite Care
- Connect with resources
- Educate a caregiver about the child
- Permit oneself to separate, knowing that the child is safe
- Plan the time
- Use the time
Each one, says Bruce, is a huge undertaking for a parent who has never done any of the above. Making good use of respite care may result in some surprises. For Bruce and her husband, taking a week's vacation at times meant spending the first few days arguing -- something they didn't have the opportunity to do while immersed in care of their children. Having the opportunity to argue was for them a luxury. After a few days of it, the tension was released and they were then able to connect in a more loving way.
Emotional Barriers to Respite Care
- Parents want to be responsible and to fulfill their tasks in life. Finding respite care may seem to them as if they are evading their responsibilities.
- If they haven't experienced the advantages of respite care, they may not understand how valuable it can be for them.
- They might not want to admit to themselves or others that they do need help, feeling that would mean they were an inadequate parent.
- Sometimes parents have a hard time stepping back in after having respite care. They see the difficulties that they were previously just living. If this happens, says Bruce, parents need to give themselves permission to be sad about what's hard. Allow oneself a source of comfort, and then go back at it.
- Sometimes the child will punish the parent for having been away, unavailable. But they will soon get over it, she says.
- Appreciation of the ability to have some balance in life, to feel that one's own needs are being attended to in addition to those of the child, will enable a parent to give more and the whole family to enjoy a better life.
Ronnie Friedland is an editor at Care.com. Previously she co-edited three books on parenting and interfaith family life.