Chapter 11

Social Support

chapter_11 Gina and Al: Having a supportive friend can make all the difference.

This chapter reviews issues relating to acquiring the support of family, friends, and others. Suggestions are made for improving connections and staying involved despite limitations.

Excerpt from page 222:

Dealing with Friends and Children

Many people in my study talked of the difficulty of having their children’s friends be fragrance-free. Some adolescents even stopped inviting people to their homes as they were embarrassed by their parents’ demands. I think this is copping out. The chemical-free atmosphere of the home must be preserved for the safety of the MCS parent, just as wheel-chair ramps are required when a family member is in a wheelchair.

It takes a lot of effort to educate and “clean up” a friend for visiting, but it is worth it. You can make little kits of safe soap, shampoo, and conditioner for friends’ use when they visit. Discourage their use of chemical fabric softeners (there are safer ones now) and mothballs. Perhaps they can keep a change of clothes in a plastic bag to use when they visit you. Once someone is educated, then you can go on to other things, such as having real interactions. People need to be educated and to know that simple things like fabric softener are so impregnated with toxins that they make a large number of people sick.

It is not acceptable for adolescents to give up on parents with MCS any more than it would be to give up on a parent with any other type of physical challenge. You are still the parent in your household, and as such, should hold some authority. Family systems should not become so skewed and out of balance that the parents no longer have their children’s respect.

You may feel that you are an inadequate parent because of your inability to attend your child’s school events and other functions. However, you can still be a parent where it counts. Even if you don’t attend every activity, you can listen, care, advise, and support your children. Parents with disabilities can be respectable, nurturing, and available, and it is up to you and your spouse or partner (if you have one) to arrange life in your family so that this occurs.

There are many things that you can do as a family with some creative planning. Maybe instead of going to a street fair and breathing perfume and propane, you can go on a picnic and eat organic food and take a small walk. With planning and adjusting you can still share some activities. If you can be relieved of some of the activities that make you ill or exhausted, you may have more energy left for more important and meaningful parenting tasks. When grown, your child will not remember every PTA meeting that you missed, but rather the overall picture that is largely composed of the quality of the relationship you provided.

Quality relationships preserve appropriate parental authority. When family therapists look at families in distress, they look at power, boundaries, communication, and roles. All of these are relevant to the family with an environmentally sensitive member. Parents should always have sufficient authority in the family to effect change, and to provide a safe and loving environment for their children. If a parent has become disrespected and disempowered by the family, then that power needs to be restored to that parent. The inability to breathe perfume is not a character flaw and should not set you up to be the family scapegoat. Do not accept this reassignment of authority.

Furthermore, boundaries between people in healthy families should be strong enough so that each person has his or her own identity and room to grow. However, boundaries should not be so rigid that people can’t communicate and share. If the boundaries are too rigid, there is no intimacy. If the boundaries are too permeable, then the family is said to be enmeshed. An enmeshed family blurs the identities of its members and does not allow each person an adequate amount of personal space or privacy. Do you think that your sensitivities have affected the boundaries in your family? For example, children do not belong in the parents’ discussions about experiences of sex or conflict. With an ill parent, this boundary may tend to dissolve while the children are taking care of the parent, or the well spouse or partner comes to rely more on the children. For healthy family functioning, however, the couple’s relationship should be preserved complete with an appropriate parental boundary.

Roles also are an important piece of a family’s identity. Has your health changed the roles in your family? Some practical aspects of the parental role are bound to change when you have limitations, but the cognitive (mental) aspects of the parenting role should be maintained. Who plays what role in the family? Initial therapy sessions with a family reveal so much about how members relate, such as who speaks for whom, who relates to whom, who gets listened to, and many other functions. Ideally, each person in the family is able to communicate directly with every other member without translation by a third member. Each person is listened to, people speak for themselves, and no coalitions form that exclude any family members.

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