Parents of special-needs kids: You’re the heart of the family

Many factors can influence the well-being of a family. One factor is certainly the emotional and physical health of the parents.

You, as parents, are definitely the heart of the family. You are the ones who deal with the issues associated with your child’s disability — doctors, child care providers, family members, your child’s school, the professionals who work with your child.

Parents with special-needs kids the heart of the family

by Carole Brown, Samara Goodman and Lisa Küpper

You also maintain the household — working to pay the bills, shopping, cooking, cleaning up, taking care of other children. Is it any wonder that many parents of children with disabilities report times of feeling overwhelmed?

Therefore, it is very important for you, as parents, to take some time to care for yourselves as individuals: getting enough sleep, eating regular meals, taking a short walk, and doing the things that you really enjoy, even if you can only squeeze them in occasionally.

As one mother relates:

I would sometimes retreat to my “tower” and pretend that I had no responsibilities other than to amuse myself with a good book or a soothing tape. The respite usually didn’t last more than a half hour, and it was never enough, but it helped me break the “martyr” pattern of thinking I was required to live and breathe only for my children.

In those brief moments of quiet reflection I could renew my sense of self and remember that I was important, too; that I was Kate, a person, with lots of abilities and interests that did not all coincide with my role as Mommy. I came to realize that a little selfishness is not a bad thing. If I could enjoy myself more, I could enjoy my children more.

As parents of special-needs kids

Many families will be single-parent families, but for those who are not, the relationship between the parents is a factor that can influence the family’s well-being. When the parents’ relationship is a strong and supportive one, it enriches family life for all members.

Conversely, when there are problems in the relationship, the tension affects the rest of the family as well. This is stating what most of us already know — that marriages undergo change with the birth of a child, any child. But when a child in the family has special needs, this change may be even more profound. As Kelly Harland puts it, “[H]ow unexpectedly it all unfolds. One moment, you and your lover are singing along in bad Italian with Venetians in a crowded bar… red wine pouring out of nowhere. And the next minute, the two of you are filling out disability forms for your tiny son.”

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Much of the literature written by parents discusses ways for parents to protect their relationship. One point emerges again and again, and that is the importance of making time for each other: meeting for lunch, getting away for a few hours together, sharing an activity.

Talking to each other and really listening are also important — and conversations do not always have to revolve around the children in the family. Finding other topics to discuss can do much to revitalize parents and preserve intimacy between them. It is also important to recognize that there are times when one partner needs to have space.

As one parent puts it, “Realize that you do not deal with this stress in the same way your spouse does. Let your spouse deal with it in their own way, and try to come to an understanding of your differences.” Another parent shares, “At these lonely moments, the greatest gift was simply to let the other be.”

Sharing the duties of providing care is also necessary, although couples report that they often have to work hard at communicating in order to achieve the “we-ness” that goes behind teamwork. Many parents have found it is necessary and helpful to seek joint counseling. Through this process, they grew to understand each other’s needs and concerns more fully and found ways of discussing and resolving their differences.

A good cop parent not enough protect from a bad cop parent

As one parent says, “We steer a rocky ship, my husband and I… We have had to check in with the therapist, sometimes once a year, sometimes once a week. We’ve experienced a hard distance between one another from time to time, as Will in all his complexity takes over every spare second of our lives. We have hung on, though. Our hearts are bonded by something that goes even deeper than love.”

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