Wednesday, August 1, 2012

Raising a Family with a Special Needs Child

Raising a Family with a Special Needs Child

By Lee Vander Loop
CP Family Network Editor
Raising a family with multiple children today can be challenging. Add to the mix a child with special needs, and parenting takes on a more daunting role. Coping with the many physical, emotional and social needs of the family unit demands a team effort. Here we’ll try to provide tips and guidance on how to “hold it all together” to raise a healthy family with multiple children and a special needs child.
In my 26 years of raising four children, the oldest of whom has severe spastic quadriplegia cerebral palsy, I’ve had countless people ask me “how did you do it?”  My children are very close in age and my husband’s job took him out of town frequently. In writing this paper I look back and analyze how I raised four well-adjusted children, met the many demands of caring for our special needs daughter, Danielle, and managed to keep my marriage and sanity in tact.

Spouse Support Critical

First and foremost I had the support of my spouse. I use the phrase “passing the baton” to describe how my husband and I would manage the constant demands of meeting Danielle’s needs and the emotional, social and academic needs of our other children. My husband and I entered our marriage with the understanding that we both would give 150% of ourselves to each other and to whatever we had to overcome. Although I was and am the primary care giver, my husband is actively involved in Danielle’s care. Decisions are made together in terms of medical management of Danielle’s cerebral palsy. We share responsibility for everything.

Stress, Parenting and Marriage

Raising a multi-child family can put a strain on any marriage. Having a special needs child included can test a marriage to its core. It’s been said that a special needs child can “break or make a marriage.” Fortunately, in our case, parenting a special needs child made us stronger as a couple and as individuals. Many studies have been conducted assessing the stress factors on marital relationships in relation to raising a child with a disability. A 2006 study by Boston College examined the contribution of the marital relationship to the well being of both mothers and fathers of children with developmental disabilities. The findings support the importance of the marital relationship to parental well-being and illustrate the value of including fathers in studies of children with developmental disabilities.
Another study looked at how the mother’s stress affected the child’s development of social skills and related behavioral issues. Not surprisingly, it found that the more stressed the mother, the worse the child’s social skills over time. The study concluded that intervening in mom’s stress early on could help children develop down the road.

Rules of the Marriage Road

My husband and I early on agreed to some marital ground rules for handling marital stress. These included:
  • Agree to disagree.” In any realistic relationship there are disagreements. Compromise if possible. If not, take turns in giving in graciously and move on.
  • Confine Adult Conflict to Adults. If you have to argue, do it in private and not in front of the children or the home health aides.
  • Date Night – Try to establish quality time with your spouse, even if it’s just one night a month. I was fortunate that our daughter’s school nurse was available to provide us that respite night out and her teenage daughter provided child care for our other children.
  • Establish a Support Network – Don’t make your spouse your only support network. It puts too much stress on the relationship. Consciously make an effort to develop connections with the special needs community, your neighbors and your friends. A good place to start is with your local ARC chapter. I initially made contact with the local ARC in search of child care for my daughter and found a caregiver who was, herself, the mother of a special needs child. She not only helped me with Danielle, but my other children as well. More than 20 years later we’re still friends.
I developed lists of competent nursing help and scheduled nursing hours for after school hours so I could take the other children to softball, baseball, keyboard or other activities. This allowed me to connect with other parents.  I wasn’t shy about explaining to them what my situation was. As a result, they understood when I couldn’t provide transportation for a play date or sleep over, and were happy to step in to help. Making friends with neighbors assured that I always had someone to sit with Danielle if I had an emergency come up, like having to retrieve a sick child from school.
Bottom line: Let people know what your needs are. Let people help. Build your support network.

Set Routines are Essential

All families need a routine and continuity, children especially. Set a routine for your family that includes meal times, set bed times for the children and routine evening events such as reading  to the children before their bed time, and established times for homework and chores.
In our family a routine was essential. My husband’s job necessitated a routine dinner hour so he could eat, sleep and be up for work by midnight. Keeping three children busy and relatively quiet while dad was sleeping was challenging. Routine dinner times, bath times and bed times established a rhythm in our household that comforted and soothed. An 8 p.m. bedtime when the kids were preschoolers allowed me a short respite at the end of the day.

Spread the Work Around

Coordinating, planning and coping with the management of a household, possible employment, doctor and therapist appointments, and the physical, medical, academic and social demands of each family member requires a cooperative effort by everyone involved. Make sure you spread as much responsibility as you can to other family members.
Assign chores to everyone in the family, including your special needs child if they have the ability. If you’re feeling overwhelmed with very young children, consider hiring a teen neighbor at times to assist with some of the light housekeeping or laundry chores. The family unit is a team unit. Children should be taught to help around the house and contribute to the team effort of the family. Assigning simple chores to all the children provides them with the sense of pride in their accomplishments and contributions.
In our home the children were presented with a list of the daily chores that needed to be completed and they chose what would be their daily job. It didn’t change. Everyone knew who was responsible for taking out the garbage or the cleaning up after the pets. With young children a reward system helps. The reward can be as simple as a “milk and cookie treat” or a favorite activity after cleaning up toys or completing their assigned chore. We paid our children a small weekly allowance for completion of chores. Completion of their chore gave them a sense of pride in their efforts, accomplishments and family contribution and taught them the value of a job well done. The allowance served as a motivating monetary reward, along with a money management lesson learned when they decided to save or spend their wealth. There was always positive re-enforcement and “mom’s praises of gratitude” for their efforts and contribution.
In the case of assisting with their older special needs sibling, I didn’t put any of the responsibility of our daughter’s care on her siblings with the exception of turning off a feeding pump or pushing a wheel chair, a task they all took great pride in when they were young.

Foster Interaction

Our children learned early to interact with Danielle, to speak to her normally even though she can’t understand or communicate. We pasted their art work in Danielle’s room, which, from its location, was a busy thoroughfare in our home, encouraging constant contact. When they were very young, I explained to our children that Danielle was different because she had a “boo boo” in her head. They called her by the nick name “boo boo” for many years.

Create “Moments”

Life is a combination of moments. When raising a multi-child family and parenting a child with special needs, sometimes moments is all you have. Family at-home movie nights, pizza nights and nightly family dinners are wonderful examples of routines that bring everyone together for moments of quality time.

Scream When You Need To

No one is super human. Being an effective, supportive and loving parent often dictates we place our own needs, emotions and wellbeing secondary to our spouse and children’s needs. Raising a child with special needs can mean facing many moments of fear, frustration and despair. How you manage those times is important. We sometimes feel that we have to always be strong, invincible and in control. That’s not a realistic expectation of our selves. It’s unhealthy to keep strong emotions bottled up. When you feel things building up, find a moment for yourself to deal with these emotions. When I feel a “melt down” coming on, I call a friend or family member with whom I feel comfortable laughing and crying. I talk it out. I cry, scream, kick a garbage can, whatever helps me get through the moment.
Of course, looking back is always easier than when you’re in the middle of it. I learned to take parenting one day at a time, just as you are doing. It wasn’t easy. Still isn’t some days. But then some days are a joy. Talking to each other, sharing, allowing friends and family to ease the burden are all ways to help us get through the journey.
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