Respite: You Deserve a Break Today
by Cindy N. Ariel, PhD and Robert A. Naseef, PhD
Life with a child with special needs presents constant challenges and stress. Inevitably, you get wrapped up in the stresses and strains of everyday life.
Marriage and family relationships are impacted. Communication problems, lack of time and energy for personal, marital, and family activities, and social isolation affect many families. It seems obvious that parents need to refresh and recharge. How does a parent get a break?
First and most critical is your own state of mind about the emotional issues. Do you feel guilty, and are you ready to deal with it? Can you trust anyone with your precious and fragile child? Do you fear that something could go wrong?
As opposed to feeling like you’re doing something wrong and irresponsible by leaving your special child with someone else, you can actually be doing the responsible thing by taking care of yourself and your other relationships.
Many people start with small breaks. Your break could be anything from a half-hour or an hour alone without children in your home, or an evening or a day out, an overnight or long weekend away, or even longer.
Second and also challenging is where to find help. Do you turn to relatives and friends or do you seek services through a public agency?
Emotional Resistance
Let’s look at the obstacles and the solutions. Undoubtedly you dreamed of a healthy child — now you face a different life. Feeling overwhelmed at this point is normal and natural but very difficult. You love your child, but sometimes you feel you need a break. It is so hard to give yourself permission to take one.
Many “shoulds” may surface: I should be able to handle her all of the time, I should love being around my child, I should not tire of giving love to my family. These shoulds can make it difficult if not impossible to take a break or ask for help.
This way of thinking is irrational. Taking a break from caregiving, or craving adult time instead of watching the same video for the 47th time has nothing at all to do with love. The more you nurture and give to yourself, the more you will have to give to your family.
Once you convince yourself that you deserve a break, there may be other levels of emotional resistance. Let’s get one thing out in the open. The absolute ideal person to spend time with your child is you. You are the most competent, loving person available to care for your child.
But this is no reason to never take a break. Clearly, if you have a medically fragile child you need someone exper-ienced with the kinds of medical issues your child might have.
Okay, so the nurse isn’t as patient as you when your child tries to drink from the straw. Your child will not only live through this, but will learn through it. Admit that nobody will be as good as you. Then find the best possible alternative.
Most of all, your child will learn that you always come back, that you love him the best and you are happy to see him when you come home.
Once the emotional issues are resolved enough to consider finding someone else to watch your child, new roadblocks may emerge.
Respite is temporary relief for caregivers and families of children with disabilities, chronic or terminal illnesses, or the elderly. Even though most families take joy in providing care to their children, the physical, emotional and financial demands can be overwhelming.
Finding Respite Services
The National Respite Network (www.archrespite.org) has a “Respite Locator Service” which helps parents, caregivers, and professionals to find services in their state and locale. If you fail to find a program near you, contact one of the following:
• Your county department of mental health
• The ARC
• United Cerebral Palsy
• Your state’s Developmental Disabilities Council
• Your place of worship
• Family service organizations
Melissa Modesti, an Elwyn Special Education for Early Developmental Success (SEEDS) social worker warns, “There are many bumps in the road that can leave your head spinning.” Wendy Schmid, Elwyn director of training, has seen some children grow up without their parents ever getting away for a weekend because their child could not be cared for in their absence.
At times, parents wind up taking their children who have a mental health diagnosis involving severe behavior problems to a crisis center, according to Francesca Vassalluzzo, a program manager at the Mental Health Association of Southeastern Penn-sylvania. So children with ADD, ODD or bipolar disorder may wind up with a psychiatric hospitalization “when families are at the breaking point” and behavior has gotten out of control and needs to be stabilized.
State Programs
Funding often presents a roadblock in getting respite care.
In Pennsylvania, children with disabilities have little chance of getting funding for respite unless they meet the criteria for mental retardation (MR).
In New Jersey, families can qualify through the Department of Developmental Disabilities (DDD), which has broader criteria and does not require the MR label. Eligible families can access services in their home for 20 hours per month and get a respite worker or money to hire their own support person.
In Delaware, the Division of Developmental Disabilities Services (DDDS) has a respite program that provides for a maximum of 240 hours per year without charge, “contingent on the availability of resources.” Unfortunately, resources have not increased but demand has. The Delaware Department of Education has developed a respite program for families that have children with autism, allotting 24 hours of respite per month plus seven days each year for vacation. Payment is on a sliding scale, with parents footing 5-25 percent of the cost.
Fortunately, there is more hope on the horizon. On Dec. 21, 2006, President Bush signed The Lifespan Respite Care Act of 2006 (HR 3248). The new law authorizes $289 million over five years for state grants to develop Lifespan Respite Programs for quality, affordable respite care.
Do It Yourself
Many families prefer to arrange their own respite with people they know, such as a compassionate relative or friend who knows their child and her particular needs.
A respite swap could be possible with another family that has a child with special needs. This swap could be set up as a sleepover and be really fun for the children of both families. The families take turns hosting, with the parents without children getting a free weekend.
According to Kristin Nelson, family support director of the Illinois Autism Training and Technical Assistance Project, “For those fortunate enough to have funding for support personnel, it is both a blessing and a headache — a blessing because the right person can make a huge contribution to a family’s quality of life, and a headache because the task of finding, training and keeping the right person is a part-time job unto itself.”
You’ll find a guide for finding and keeping support professionals at http://rtc.umn.edu/ILdspworkforce/docs/ToolkitforFamilies.pdf
There are many obstacles to respite care, both emotional and logistical. The emotional challenges have to be worked through in order to take the next step and seek the respite care you so need and deserve.
The goal is a critical one: to rejuvenate and replenish your own sense of energy and to give to yourself so that you have even more to give to your children.
Cindy N. Ariel, PhD and Robert A. Naseef, PhD, are Philadelphia psychologists who specialize in helping families cope with special needs (www.alternativechoices.com).