HOW TO ENCOURAGE PARENTS AND CHILDREN
WITH SPECIAL NEEDS

Life on Hold
     It’s high-stress out-of- control time.  As a parent you have days when life feels ‘on hold’ or out of control because your child is sick.  You scramble to find someone to cover for you at work or at home, then dash out for medicine, comfort food, and a stack of DVDs.  But for some parents, those ‘I don’t feel good, mommy’ days are nearly every day as their child lives with a chronic illness or disability.  Experts estimate that one of every ten children is born with some physical or mental disability. Parents and siblings (especially) are at high risk to experience prolonged psychological and emotional adjustment problems. 
     On December 23, 1985, my husband and I sat in the neonatologist’s office, dazed as we listened to him describe the disease with which our infant daughter Kristen had just been diagnosed.  Until then, my biggest parenting challenge had been to keep our toddler Katy from jamming pennies into the VCR.  But when Kristen was born with cystic fibrosis, a genetic condition affecting the lungs and digestive functions, my ‘normal’ world spun out of control. 
     You too may have felt like a loser in the genetic lottery as a pediatrician’s words shattered your illusions of normalcy.  Perhaps your journey did not begin at your child’s birth, but later as the confirmation of a learning disability or acute disease created chaos in your home. “There's a real stress associated with having a child with a disability,” said Debra Lobato of the Bradley Hasbro Children's Research Center in Providence, R.I.  “It's physically demanding day in and day out, and is associated with a higher rate of depression especially among mothers.”
     It’s important to accept and address these needs at early stages because typically developing siblings are affected too. Since children play a key role in one another’s social and emotional development, they will pay the price if parents are depressed and unable to relate toward resolving these issues. If the parent is proactive and works toward establishing healthy patterns in the relationship, much can be done to combat siblings’ feelings ranging from embarrassment to frustration, guilt and anger. It’s critical to explain the condition in medical terms and reassure both the healthy and handicapped child did nothing to cause it. Of course, the parent must first come to terms with the situation himself and that can take time and effort to deal with any underlying issues. But there is hope and there is help.
     
Finding solutions may not be the first priority.
     Knowing the answers is not as important as accepting the questions. When I resist the urge to shut down my daughter with quick-fix solutions, I come closer to hearing the questions and feelings behind her initial words.  When she tells me, ‘My foot is really sore’ or ‘I was up a lot last night coughing,’ my first response is too often, ‘Let’s call the doctor.’  That may indeed be a logical step in helping her cope with complications of her diabetes and cystic fibrosis.  But most of the time, the best words out of my mouth next ought to be, ‘Tell me more.’ Listening beneath the layers to complaints and questions of the disabled and healthy child alike—non-judgmentally—is crucial to keeping important communication channels open. It’s challenging, but worthwhile to take the time to understand what is really happening to your child on her inside that she cannot talk about just yet.
     Offering freedom to express feelings is part of the healing process.  Fred Rogers, renowned for developing repartee with children, once said, “If it’s mentionable, it’s manageable.”  I give each of my children a great gift when I create a climate of safety for them to express troubling emotions. Because they are naturally focused on self, they might harbor feelings of frustration and resentment for their disabled sibling. Sick children struggle with many of the same feelings and more. If they sense their anger, worries or confusion are off limits to talk about, these may bottle up inside and mushroom to unmanageable proportions. Encourage your child to be open and talk through their fearful feelings and experiences and don’t dismiss what they have to say. Sometimes professionals are a valuable resource in finding the way through rough periods in family life.

Making adjustments in light of reality

     Most families with a chronically-ill child do not want the situation to consume their entire energy and schedule, nor become their identity.  They want to talk about things besides their child’s health.  They may even fight to maintain a semblance of normalcy in the midst of frequent hospitalizations and medical crises.  We try, for example, to make weekly commitments to church and accountability groups even though we know life will be interrupted with the demands of caring for an ill child.
     But maintaining a life with routines and commitments doesn’t mean living oblivious to our reality.  We will spend tedious time on the phone arranging medical appointments, countless hours in waiting rooms, and perhaps days by a hospital bed, all while shuffling piles of insurance forms and bills.  New demands have been added to our “plate” and prior commitments need to be re-evaluated.  Addition without subtraction will soon lead to depletion for all involved. Additional help may be needed for simple jobs in running the home, such as cleaning, lawn care and carpooling. Reassure that if parents need to be at the hospital, there are people who will care for the healthy children. Normalcy is the greatest goal, although sometimes hard to achieve.

 Caring for the caregiver
     Self-care is a gift to your child.  Every parent walks the tightrope of balancing competing needs.  We serve sacrificially, yet recognize the wisdom of carving out time to nurture ourselves.  On the Holmes-Rahe Stress Test, caring for a disabled child has a stress rating of 97 out of a possible 100. Recognizing trigger moments when depletion overwhelms becomes the responsibility of the parent and time off and time away become essential for survival. During our daughter’s first two years of life, she spent 125 days in a hospital receiving treatment for complications from her cystic fibrosis.  We realized early on the need to guard our own health and stamina, and resisted the tug to keep a constant vigil at her bedside. We welcomed the refreshment of time away from the beeping IV monitors and whirl of medical personnel.
     Find friends or family to spend time with child.  We took advantage of nights at a nearby Ronald McDonald House, and of friends’ offers to spend time with her.  My husband and I continued to invest time and energy in our marriage, recognizing how the stress of caring for a chronically ill child can erode the marriage relationship. Debra Lobato explains parents might be in denial about the effects, trying to keep the boat afloat. Friends and extended family can "get in the boat with that parent, take one of the oars, and start paddling for him or her."  It is possible for a parent to have a good day even if the child is having a bad day.  One of the challenges of life is to develop empathy and concern for loved ones—while at the same time learning appropriate separateness and boundaries.  While our child’s struggles and pain will always be on our hearts, we can learn to assign these concerns ‘second place’ now and then and give ourselves the freedom to laugh with friends, savor a restaurant meal, or escape with a good book.
     Commit to attending meetings and do research. A support group of parents facing similar challenges may be the highlight of your month.  Or you may decide that your child’s disease already dictates so much of your family life that you do not want it to determine your circle of friends as well.  Fluctuating seasons and dynamics of a family’s life means different choices for family members at different times.  But a fatigued parent who feels trapped by overwhelming demands always has a choice— choices which will need the discernment of the ‘serenity prayer’ to know what to accept and what can be changed.

Pushing for growth yet embracing limits

          We all love ‘overcomer’ stories of people who have viewed obstacles as hurdles to be leaped and mountains to be conquered.  We can all point to times in our lives when we’re glad we didn’t quit.  But there are others times, too, when we wish we had said, ‘Enough is enough.’ 
When children face the daily extras of therapy routines, multiple medications, or monitoring blood sugar levels, how much else can we expect from them?  When should we push and insist they go to school, and when do we acquiesce and tuck them back under the covers?
In order to develop successful coping strategies for special needs kids, caregivers must be aware of their emotional, social, communicative and psychological limits. As much as is possible, problem solving techniques should be introduced to help the child be aware of and cope with excessive stressors. Personal dilemmas, challenges and inspirational stories of others persevering in the midst of difficult circumstances can be shared. Always praise and encourage all your children when attempt is made to go beyond his or her comfort zone.  We want to respond with mercy to their moodiness and angry outbursts in light of how frustrating life is for them, and yet still hold them accountable for responsible social and emotional behaviors.

Use of Effective Support Systems

     Treasure hunt the challenges.  The good news for siblings of chronically-ill children is that they will have unique opportunities to learn mercy and compassion.  My five siblings and I watched one of our sisters’ cope with juvenile rheumatoid arthritis which became so severe that she was confined to a wheelchair.  Years later we all recognize how servant-hood was forged in our young lives as we brought her drinks, carried homework to school, and sat beside her on the sofa playing board games.  Her courageous battle to live a full life in the midst of debilitating pain gave me perspective that some problems were bigger than mine.
     The bad news, though, is that sometimes growing up with special-needs sibling means that the healthy child minimizes his own pain and struggles.  Certainly some pain is worse than mine—but mine still matters.  No parent can perfectly balance the time and attention given to each child, but parents need to be careful not to compare or ‘guilt’ their well children with messages like, ‘If you had your brother’s problems, then you’d really have something to complain about!’ It’s important not to let the healthy child take on too much responsibility for the special needs child and parents need to understand they are protector and champion of all their children.
     Parents and siblings can begin the process of healing in a support group designed especially for them and most find it therapeutic, educational and fun. Siblink is one such group; started by Dr. Lobato in 1995, it has a high success rate in dealing with healthy adjustment in families. Sibshop, is a similar program developed by Don Meyer in Seattle, with chapters in many states.  The kids realize they are not alone.
     At a recent Sibshop held in Tracy, CA. 10 healthy kids, with special needs’ siblings, gathered to play volleyball where no player could use their hands or feet. It helped them realize the limitations people with limitations face. ‘I’m not good at this,’ said Anahi. Another said, ‘nobody is. That’s the whole point.’
     Our older daughter, who does not have cystic fibrosis, sometimes feels ‘second-class’ when friends’ inquiries about our family predictably focus on Kristen’s well-being. During one of Kristen’s recent hospitalizations, we especially appreciated the kindness of a couple who gave both our daughters generous gift certificates at a local mall, recognizing the sacrifices our healthy daughter makes each time her sister is hospitalized.

Look for ways to encourage beyond words.
     Give the gift of your presence.  In the classic biblical account of Job and his suffering, the friends who sought to comfort him may have done their best work when they said nothing!  Before they began offering explanations and solutions, they sat with him in silence for seven days.  Sometimes cuddling on the couch or soothing a crying child with little more than our silent embrace reassures more than our endless chatter.
     Let them see you cry.  When my children express sad emotions and tell me difficult things, tears are a natural and healthy response.  And perhaps my expression of sadness will give them permission to cry and will validate that it’s OK to be sad when bad things happen.

Offer encouragement to keep moving through difficulties.
     Teach your child to view hurt and difficulties as stepping stones—not landing places.  Call bad things bad and take time to feel sadness and loss.  But model an outlook of hopefulness for your child, savoring pinpoints of light in the midst of tough days.  Talk about what they’d like to do when they’re feeling better. Look forward to and plan special adventures before painful treatments or procedures.    
     Straightforward communication dignifies your child’s ability to handle life.  One of our daughters, who battled an eating disorder for several years, including a stay in a residential treatment program, expressed fears about her recovery.  When she asked, ‘What if I relapse?’ I desperately wanted to reassure her (and myself!) that this would not happen.  But statistics indicate relapse is generally a part of the recovery process.  So instead of promising false hope and half-truths, I learned to respond with questions like, ‘What skills have you learned that would help you if this does happen?’ 

Clarify what you can and cannot do.
     Empathy, not enmeshment, is the goal.  Recently I talked with Charlie, now a successful young adult who graduated from an Ivy League school—with a congenital eye defect which rendered him legally blind all his life.  “As much as my parents tried,” he said, “they never could really understand what it was like for me to go through my days without sight.  So they made mistakes in trying to parent me and had to say, ‘I’m sorry’ a lot.”  Rather than saying, ‘I know how it feels’, parents and friends would be wise to say to children with temporary or chronic illness, ‘Tell me how it feels.’ Showing respect for the person hood of the disabled and nondisabled child alike is a powerful panacea for the pain involved. 
     God alone knows the answers. If parenting in general leaves us feeling unsure of all the answers, parenting a special-needs child creates dilemmas the size of which forces us to say, ‘God alone knows how to solve this one.’ As we live between highs and lows in the struggle, something powerful happens, and we learn to accept our children as our teachers and gratefully acknowledge the gift of their life.  Along the journey we may even discover, as a friend who has grown through a difficult parenting challenge once told me, “This experience I would never have chosen, but I would not exchange.”

Author Margo Balsis, edited by Kay Gramm
howtoencourage.com, copyright 2007