By Dana Harris

 

Parenting is hard work. In today’s society, it can be a most demanding and challenging endeavor.  It can include a range of emotions from satisfaction and joy to not-so-pleasant feelings of anxiety and frustration. Few people realize how overwhelming it is to be a parent… until they become one.  We know that perfect parenting is an illusion and there are no special formulas for assured success. But what if you suddenly come to understand that your child has other difficulties that alter your expectations, leaving you with bigger challenges to overcome?

Nothing can prepare you for the emotions of parenting a special needs child– a situation that always includes unexpected obstacles. Raising a child with special needs can add a type of stress to life than most people will not understand. It leaves parents feeling overwhelmed, exhausted and stretched beyond their limit. There are days when feeling alone is the only thought you have while juggling doctor and therapy visits, hospital bills, insurance companies and pharmacies. You may even experience a deep sadness for the child you love so deeply.

Take a deep breath because you are not alone. 

About one in four families with children in the U.S. have a special needs child.  Currently, there are about 6.6 million special needs children in American public schools, making up approximately 13 percent of the school population. Having a positive attitude helps, but having a realistic outlook and admitting your fears and concerns will make the process easier. The following list of suggestions and affirmations can help lighten the load. I hope each will help provide you with a sense of reassurance and renewed comfort.

Recognize Your Strength. You may not leap buildings in a single bound or run faster than a speeding bullet, but you are superhero none the less.  Every day, you manage situations that other parents would think are impossible. Take care of yourself.  Allow time to recuperate and relax so you can maintain your energy.  Think of your energy as a pitcher of water.  If you constantly pour out the water (your energy) and never refill the pitcher, you have nothing to give at the end of the day. Maintaining a healthy mind and spirit is a prerequisite to effective parenting.

Seek Companionship. Emotional support is crucial.  Surround yourself with people who provide the positive energy you need. When facing serious emotional difficulties, it is helpful to join a support or advocacy group.  Consider looking for a support group for parents of children with special needs.  Most well-meaning parents of typically developing children may not be able to provide the kind of support you need, or they might find the conversation awkward because they are unable to offer practical help.  Having a dedicated community of parents with similar struggles will make daily life more manageable.

Remain Engaged. While being the parent of a child with special needs is part of your identity, it is not all your identity. Find time for personal peace and solitude like enjoying a glass of fine wine, listening to some favorite music, arranging a social gathering on a Saturday afternoon or spending the day shopping. Connect with others who can relate to your journey. Accept help from friends and family by letting others know what you need.

Listen to Instincts. You are your child’s best advocate because you know your child.  Give yourself permission to ask questions, get multiple opinions and ask your doctor about the research. Research your child’s condition by reading journals, researching and listening to other parents of special needs children. Trust your instincts. Doctors, teachers and therapists are all fantastic resources, but if you don’t feel like you’re being heard or that your child’s needs are not being met, it’s reasonable to get a second opinion.

Celebrate the Little Things. Celebrate in style those accomplishments that seem small to others but are huge for your child.  Kids develop differently.  Some skills they may grasp, and others they may never master. A first step on their own, a word, a sentence, a smile, a hug— whatever that milestone is— share it with those who love you and your child.  The small things are often huge parts of a parent’s world.

Protect Your Inner Parent. You are a pharmaceutical dispensary, an at-home therapist, an insurance specialist and a medical examiner. But you are firstly a parent.  While everything on your calendar is important, it’s necessary to make room to play, laugh, be silly and enjoy your kids.  Read, snuggle and engage with them in their worlds.  Take time to appreciate your children and love them as individuals.

I have heard it said that you never know how strong you are until being strong is the only choice you have. I found this testimonial to be true on the morning of March 8, 2017, when my husband and I received a chilling phone call from Atlanta.  The voice on the phone shared that our daughter gave birth to her newborn son at 27 weeks.  What was most alarming was that she delivered her newborn all alone at home without any warning signs!  Immediately after processing the news, we drove to Atlanta to discover that a tiny miracle had come into this world weighing only 2 pounds and three ounces.  Over the next days, our grandson was in a fight for his life in the NICU. He remained there for roughly 60 days, where he received the best of care from a qualified medical team of experts. Yet, a dark cloud hovered over us as our daughter had to undergo several surgeries immediately following her delivery. I am extremely pleased to reveal that both mother and son are doing quite well.

Last year, my daughter’s son was diagnosed with cerebral palsy, a nonprogressive neurological condition marked by impaired muscle coordination, a disorder that affects about 8,000 -10,000 babies each year.  My grandson, Bryce, is now 3 years old and uses a walker, specifically designed to help with his mobility.  It is amazing to watch him smile as he maneuvers from one place to another.  He is a master traveler.

Raising a child with a disability is an awesome responsibility with exceptional rewards. Seemingly small advances are always a cause for celebration.  The more you serve your child the deeper your love grows, becoming one of your greatest successes. My daughter once shared, “The things I have learned most from my son and the struggles I have endured during these past 2 ½ years could never be taught.  Virtues such as compassion, humility, confidence, patience, joy and empathy are life rewards.  I have come to understand the value of these traits on a more personal level after having experienced each of them firsthand through parenting a special need’s child. The road ahead may be long and uncertain, but I’m ready to tackle the twists and turns, and anything in between, while enjoying the many sweet moments with my child.”

As a mother and grandmother, I have always known that we are compelled to make the most of this life, but even more motivating are the dreams we hold for our children.  At the end of the day, it’s all about nurturing grateful attitudes for all the goodness in the now and fanning the flames of hope, courage, optimism and determination for what lies ahead.

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Feature photo provided by MetroCreative
Photos provided by Dana Harris

This article appears in the July 2020 issue of Augusta Family Magazine.
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