Family Social Problems in the Rett Syndrome Claudia L Weisz, Editor

Having a child with the Rett syndrome in the family changes all the rules. It is crucial that one person not bear the entire load. The primary caretaker must build a support system, or risk resentment, exhausion and martyrdom, none of which pay very well. She should beware of the "sainthood syndrome. " The whole family needs to re-think its values, adopting a team spirit. Good communication is vital, and family as well as individual goals must be clear to all members. Family members who are not the primary caretakers must learn to recognize the signs of burnout and know how to step in and provide relief. Key words: Overinvolvement, war/troops, sainthood syndrome, communication, incorporate.

When cities are hit by tornados or hurricanes, people and governments rush in with assistance. When families are hit by catastrophic illness, they often help each other. It is in this spirit that the following is offered.

Imagine you are alone in your car on a freeway. You know exactly where you are going, and you can picture the road ahead with wonderful scenery to enjoy, all the while, heading toward your destination. Suddenly, as if it has a mind of its own, your car takes an exit off the free­way. Frantically, you try to steer it back, but you cannot. As you careen around unknown curves and are jarred over dusty potholes in dirt roads, you realize that all the things that worked before, like the steering wheel and brakes, are useless now. You've lost control and you are frightened. That's what it's like to have a child with the Rett syn­drome (RS).

Now, imagine you are on that same freeway, your vehicle takes the same exit, only this time you are on a bus. Whatever happens now takes on new meaning; you are no longer alone. Let's assume that the bus contains your family. Not only have you lost faith in the things that always worked before, but so has each family mem­ber. Trust, in. a future that could be counted upon, is shaken, if not gone. But as least you have each other.

If life is a game, then someone changed the rules, and you've got to learn the new ones, fast.

I think if we look at families with a child with RS, we will fmd that in some, each member has adjusted his life

International Rett Syndrome Association Newsletter.

Correspondence address: Mrs. Claudia 1. Weisz, 3817 44th SW, Seattle, WA 98116, USA.

Weisz CL. Family social problems in the Rett syndrome Brain Dev 1990;12:173-5

accordingly, perhaps giving up a few things, but for the most part, maintaining a balance between sacrifice and selfishness. These are healthy families. In others, one member has sacrificed everything, in order that the other family members should not have to do so. In most cases, it's the mother who assumes this role, but it can be a sibl­ing or father.

In their book, Living with a Brother or Sister with Special Needs, authors Meyer, Vadasy and Fewell have this to say about overlnvolvement:

"Overinvolvement can hurt all family members. The overinvolved person may not have any energy or time left for other people and other interests. Overinvolve­ment also leads to "burnout" -running out of energy and new ideas. Burnout hurts the handicapped child, because when the overinvolved family member runs out of energy, the child with special needs no longer gets the special care and attention that person used to give."

When the child is young, it doesn't seem such a burden, but with each passing year, each inch she grows and pound she gains, there is a subtle change in attitude of the primary caregiver. She begins to look back and see that she needed to ask for help. In the beginning, she'd had no idea that she would have more than the custodial care to contend with, she would have to learn how to be an effec­tive advocate, too. Now she fmds that the ever-present stress of fighting for therapy, and schooling that is more than just glorified babysitting, has taken its toll. Caregiv­ing has become caretaking. What may have seemed like a battle, in eons past, has become a war; and as she looks behind her, she finds she had no troops.

Build an Army

Dear Parent, this is a war we are fighting, make no mis­take. The Rett syndrome already has your child as a casualty, please take care that you don't become one yourself.

How do you do that? First, you need to accept that you cannot do it all alone. Build yourself a team, or an army, if you will, be it family members, friends, teachers, therapists, physicians, or all the above. It is crucial that you admit you need help; it is easy to become a martyr. If one person is the glue holding the family together don't be surprised when things start to fall apart.

Merely the act of selecting a helper is often viewed as an overwhelming task by the caregiver. Where do you find a person willing to do the things you do? Is there anyone who will care about her well being as much as you? Because of your child's vulnerability, you feel a legitimate desire to protect her, so you are very cautious.

Training someone is another enormous task. If you are already depressed and overwhelmed, you may be so para­lyzed by the enormity of this project of finding a helper, that you do not act at all. I have seen this happen to others. It has happened to me. This is an appropriate place for another family member or a professional to step in and take action.

One mother shared with me that she had funded care available for her daughter, but was reluctant to use it because she felt guilty leaving her child out of family activities. But when she finally scheduled some time, she said, "I thought nobody else could do this. It was a terrible mistake to carry that burden around, it was too heavy! When I finally started using my helper a few days a week, I felt like a kid again!"

Another mother said, "I know I should call and ask for respite care. We are qualified for the program. But there is so much to go through to get it, and then I have to find the right person for the job ... I can't do it. I can barely get through the day now!"

It's very therapeutic for a mother to sit down and write, step-by-step, what she does with her daughter each day. I have put together a booklet containing detailed in­structions and photos, so that anyone who takes care of my daughter will know exactly how it's done. Following the same routine is comforting for your child, and know­ing it is all down in black and white gives a mother piece of mind.

You may want to include in your booklet photos showing how you move her from place to place, bathe her, and interact with her, to help the new caregiver see that interaction is not only possible, but that it can be fun.

Sainthood Syndrome

Another trap mothers fall victim to is what I call the "sainthood syndrome." This isn't something she catches,

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or seeks, it isn't genetic, she is appointed by society. She hears so often what a wonderful mother she is to take such loving care of her special child, that it becomes more and more difficult to admit her resentments and fears. This is where sharing with other parents can be so helpful.

If you are the only caretaker, your days are numbered. You cannot maintain a fighting posture indefinitely, you will succumb to battle fatigue.

Family Roles and Communication

Next, look at your family. Some families are locked into roles without realizing it. These roles may work well for traditional families, but not for families with severely dis­abled children. We have to re-think our positions on everything. This requires family discussions. If one spouse or child feels there is a problem, then there is a problem.

Here is where communication skills can really help a family. Ask each other, "What can I do for you that would make you feel appreciated and supported emotion­ally?" If you asked that question, do you know what each member of your family would answer? Do you know what you would answer? You should.

Fathers, maybe sometimes you don't feel appreciated, and you worry about what is going to happen to your child after you are gone. You would have gladly stood between your daughter and a raging lion, but you cannot protect her from RS. Right now, that's true. But you can protect the rest of your family, and your marriage.

Look at your wife: is she exhausted at night? Does she cry easily? Does she insist on doing everything herself? Is she unable to just sit and rest? Is she depressed? Is she barely able to drag herself out of bed? Does every task seem overwhelming to her? If so, she needs your help. Take matters into your own hands. Put your sensitivities on the shelf while you assume some of the care giving duties or hire a helper.

Plan a vacation: you make the reservations and find the caregiver. Even an occasional weekend can renew her energy. And that extra effort on your part will make her feel cherished.

Do you like to cook? Can you arrange for a household helper? Can you release her from some responsibility? Don't be surprised, however, if you have to pry it out of her hands.

If she's truly overwhelmed, she needs you more than ever. How can she meet your needs, when she is unable to meet her own?

One mother I know, said, "My husband says 'I love you,' but then he goes down for a nap while I still have hours of work to do. He has yet to show me he loves me." The resentment in that family has become a wedge be­tween that woman and her husband.

My hat's off to those fathers who do help in the ways mentioned herein. However, the sad truth is that most do not-some because they just don't know how to help or

where to start, and perhaps some mothers are not willing to relinquish control of the child's caretaking.

Family Meetings

When you have a child with RS, you have to work harder at keeping lines of communication open. You might want to try to schedule weekly family meetings. Expect a lack of enthusiasm at first, but those who want to should hold the meeting, even if it's just one family member besides yourself. Always include positive statements about each member. Ask "What's the best thing that happened to you this week? The worst thing?" Use "I" messages in­stead of "you" messages, such as, "I feel so resentful when ... " and "I don't feel like we are working togeth. er. .. " instead of, "You always ... " or "You never. .. ," because we end up putting our listener on the defensive with "you" messages. Each family member should have an opportunity to speak uninterrupted and not be criti­cized for his feelings.

Keep up the team spirit with such statements as, "Look, families are breaking up all around us. We don't want that to happen to us. We have to pull together as a team to encourage each other and to help each other reach our goals."

Incorporate Perhaps all families should write out a Statement of Pur­pose, like corporations do, and hold board meetings to help focus on their goals and needs. How nice it would be

if each family with a child with RS could have the team spirit required to win the daily battles.

The soccer player, Pele, as amazing as he was, did not win those world championships singlehandedly. Without his teammates, he'd have collapsed from sheer exhaustion. Picture him, one player against a whole team. That's what you are trying to do if your daughter's entire care and management is in your hands.

Back to the Freeway

You don't have to be alone in a car, you can be on a bus. Professionals and some extended family members are willing to help if asked, and for single mothers that may be best. But without the sense of teamwork in a cohesive family unit, you are in that car again, alone.

There can be a lot of joy and camaraderie on a bus. If you've ever taken a bus to a football game with a bunch of fans, you know what I mean. The secret is in keeping the family unit strong. It takes work ... teamwork. There will be one person more motivated to pull it off, but everyone needs to help. I hope you take your bus and ride it with your team all the way to the finals. Your daughter with RS will win, too.

REFERENCE

Meyer DJ, Vadasy PF, Fewell RR. Living with a brother or sister with special needs: A book for sibs. Seattle: University of Wash­ington Press, 1985.

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