The relationship factor: when special needs challenge a
household
Written by: Cindy N. Ariel for http://www.autismsupportnetwork.com/
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!
In spite of grim statistics and feelings of being overwhelmed,
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!
Written by;
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
