The relationship factor: when special needs challenge a household

Cindy N. Ariel


Becoming a parent for the first time changes our identity forever. There is a balancing act between caring for the needs of children and putting time and effort into the maintenance and growth of ourselves and our relationships. Frequently we must redefine our values and relationships with others. This transition in the development of family life is challenged even further by disability or chronic illness. "There is a strain on any marriage whenever a baby is sick. And we always have a sick baby," according to Josh Greenfield, the father of a child with autism, in A Child Called Noah (1970).

The kind of chronic stress that raising a child with special needs entails can affect relationships at their weakest points. This is just as true for families who have "volunteered" by adopting children with special needs or providing a foster home. According to the U.S. Census Bureau (2000), 47% of all first marriages fail and 57% of all marriages end in divorce. Although the findings are inconsistent, there is general consensus among the experts that while the divorce rates are comparable, there appears to be more reported marital distress among families of children with special needs (Seligman and Darling, Ordinary Families, Special Children, 1997).

Together you and your partner dreamed of a healthy child--now you face a life very different from what you imagined. Your overwhelming feelings, both individually and combined, are normal and natural in the situation but very difficult nonetheless. The needs of the children are often complex and illusive.

Searching to find the cause of children's developmental problems and the best treatment can be a long hard journey. Getting wrapped up in the stresses and strains of everyday life, relationships inevitably suffer from lack of attention. Communication problems, lack of time and energy for personal, marital, and family activities, and social isolation affect many families. When a disability or chronic illness is discovered, powerful emotions surface and may put relationships on trial. How can couples understand each other in the wake of such devastating pain?

For a relationship that is fragile or unstable, disability can be "the last straw." On the other hand, challenging life events can serve as catalysts for change. Some families disintegrate while others thrive despite their hardships. People can emerge from crisis revitalized and enriched. Hope for relationships can really spring from the crises people experience when their child has a disability.

If you and your partner are parenting a child with special needs, here are some suggestions to help your relationship:

Work to understand each other's needs. Family life can be a test of love and resilience, so taking good notes and working to understand each other's wants and needs are vital to the success and survival of an intimate relationship. Life has veered sharply from what you had expected it to be. Try not to blame each other for the situation. It takes time to sort this stuff out. Be kind to yourself and each other about how difficult this can be.

Spend alone time together. While the issues in any particular relationship are complex, it can be a good start to plan time together alone, even if only for a few hours. In study after study, people who report their marriages to be satisfying describe their spouses as their best friends, and people who are best friends have activities that they enjoy together. Most people get married, in large part, because they enjoy each other and make each other feel good. Who would have married their spouse if the last time they relaxed and/or had fun together was months ago? A close bond between partners can help parents through the rough spots. You can start with sharing a cup of coffee or tea, dinner out, or a movie or concert.

Take care of your individual selves. Your children have conditions that may require lots of care and supervision. In the struggle to advocate for our children's needs, our own needs as individuals and as couples get lost. Many people stop focusing on their marriage, but this never helps. As hard as it may sound at first, start to think about taking care of yourself and adding some fun and enjoyment into your life even though it can take a long time for this to feel okay. Take some time for yourself doing things you enjoy. This can be anything from physical exercise or journaling to just grabbing time to read the newspaper or a good book.

Reach out. When possible share the responsibilities at home by working together on chores, childcare, and education. It is helpful when couples both work to learn about their child's disability, prepare for and attend IEP meetings, etc. Get involved in the special needs community if you can. There's so much to manage everyday that reaching out to your partner, relatives or friends can help lessen the burden.

Communicate. When a person is in pain he or she may withdraw, or become frustrated and angry. It's hard to talk about something we have no power to change or fix. At times the reactions of couples can become polarized or opposite. For example, one may notice problems in the child and tend to worry and feel negative while the other holds hope and optimism that in time everything will be fine. Try to consider all your feelings toward your child-- both positive and negative-- and discuss issues in ways that will help both of you feel understood and find solutions to problems. In general, the way out requires working through the painful feelings with one's partner and arriving at some form of joint acceptance and effective co- parenting strategies.

Seek assistance. Sometimes a mental health professional (a social worker, psychologist or psychiatrist) can be helpful to you in understanding the needs of the children, yourself and your marriage. Some people are reluctant to take this step, but when it becomes hard to function from day to day, this kind of help may be in order. Just as you would consult more than one specialist for your child if necessary, do likewise for yourself. If your partner is too discouraged, then start by yourself. Sometimes a change in one partner changes the chemistry of the situation for the better. It is intelligent and wise to acknowledge the needs of yourself and your marriage over time as well as your child's needs. Your special family is worth it!

Sidebar
In spite of grim statistics and feelings of being over¬whelmed, having a disability in the family can have a positive impact as well. Here are some suggestions to offer comfort and direction for couples as well as singles who are parenting a child with special needs:
1. Communication is key, so
a. Resist the tendency to blame
b. Ask for what you need from others; also take good notes about your partner's needs
c. Listen actively and with compassion to each other; tell your partner what he or she is doing right.
2. Add some fun and enjoyment in your life-- alone and with your partner. If you worry too much about leaving your child with someone else, take your beeper or cell phone.
3. It helps to be as active as you are comfortable being in the community as a whole and in the special education community in particular.
4. Exercise-- almost any form of exercise will lift your sagging spirits if you do a form of exercise that you enjoy and do it regularly.
5. Journaling-- writing down thoughts and feelings and experiences is helpful for many of us trying to put things into perspective.
6. Support groups-- It is often helpful to share experiences, thoughts and feelings with others who are in the "same boat" and can understand.
7. Break problems down into more manageable pieces.
8. Remember that you are both on the same parenting team-- not competing or fighting against each other.
9. Seek professional guidance when necessary. It is not a sign of weakness to seek help when you need it. On the contrary, it is wise to think of your needs as well as those of your children.
10. Keep in mind that a hard life can still be a good life!

Cindy N. Ariel, Ph.D. and Robert A. Naseef, Ph.D. are psychologists who specialize in helping couples cope with special needs in their family (www.alternativechoices.com). They are the co-editors of "Voices from the Spectrum: Parents, Grandparents, Siblings, People with Autism, and Professionals Share Their Wisdom" Naseef is also the author of the highly acclaimed book, Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child With a Disability

Reprinted courtesy of MAAP


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