BY PEG GRAFWALLNER
“Summer fun” is an oxymoron for many parents of special needs children. In truth, the summer can be an anxious time for parents and child. The routine of school has ended and parents are thrust into the role of travel guide, event planner, taxi cab driver, and concierge – roles for which most parents are ill-prepared. The summer is spent, for most of us, finding opportunities and activities for our children that continue to promote learning. According to the Huffington Post, the average child loses “between one to three months’ worth of learning during a long summer vacation”1
If the typical child loses “one to three months’ worth of learning,” what happens to our children? According to Holly Zipperer, director of summer programs at Valley Forge Educational Services, “children with special needs can lose hard-earned academic skills over the summer, along with social and behavioral gains they have made”2
We brought Ani home from a Bulgarian orphanage in August of 2001, when she was nearly six years old. She began part-time kindergarten the following September. Her first long break was Christmas vacation. Without the established school routine, Ani experienced terrible tantrums and mind blowing meltdowns during that two-week hiatus. I didn’t know what to do and often cried along with her.
I began to dread the upcoming summer vacation. I realized I wasn’t up for the challenge of keeping her busy, preserving her learning and maintaining some kind of calm all at the same time. Soon the predictability of school would be over and I would need to create a new routine for her; I didn’t have the skills, patience and understanding to know what she needed. Any type of break sent her into a tailspin. What would summer do to her… and us?
As the years went on, the outbursts subsided, but they were a reminder of the necessity of planning and the importance of networking. Ani is 20 years old now and I am much smarter. If I had to do it again, I would take time to organize activities; structured opportunities as well as independent experiences. I would network with other parents asking them for ideas, suggestions and help. Finally, I wouldn’t assume that Ani’s summers would be similar to the summers spent with our son, Max. When he was small, he went swimming at our neighborhood pond with us, played hockey in the driveway and constructed craft projects when it rained.
I imagine Ani had none of those fun summer experiences in the orphanage. We assume she had never played in water; she told us many years later that she remembers cold water being dumped on her for a shower. Her mobility was adversely affected probably from being so tightly swaddled, laying in a crib for hours. Finally, the creativity that I thought all children possess seemed stifled in Ani; she didn’t know what to do with markers or a paintbrush and stared at me when I gave her those items. So, what is a parent to do?
While having fun is the typical job description of summer for most kids, as special needs parents, we realize summer is a critical time. During that first summer Ani was home, I watched her rage on an almost daily basis. I vowed the next summer would be different. I was driven to make sure Ani didn’t lose any learning or social skills that had been established during the school year. If fun happened during those summer opportunities and activities, then I considered that an added perk.
Upon arriving home from the orphanage, Ani’s psychiatrist suggested that we refrain from traveling with her for at least a year. It was important, he said, that she recognizes home and what home is. As a result, we didn’t go anywhere for several months and then traveled only on occasional weekends for Max’s hockey. We didn’t go on a “real” vacation for nearly three years after we brought her home. But by that time, she was ready to go. Because she had experienced hotels and pools, she understood what a “vacation” meant; because she had become an integral part of our community, she was not afraid of new people or new situations; because of structured exercise, she was able to walk for long periods of time in the Wisconsin Dells or in the Magic Kingdom.
Summer fun can be a distressing time for parents of special needs children. However, with some suggestions, assistance and forgiveness, it can also be a time of wonderful bonding and beautiful memories. Take the summer to slow down and enjoy what your child’s abilities have to offer; trust me, you’ll be surprised at all the wonderful things you can do.•
STRUCTURED ACTIVITIES : A PLAN FOR ANI
Here are some of the structured summer activities that were successful for our Ani:
• Swimming lessons: Ani was introduced to hotels and hotel pools within months of arrival because Max was an avid hockey player, often competing out of town. She took swim classes twice a week at our neighborhood recreation center for years, eventually joining and competing as a member of the high school swim team.
• Dance class: I enrolled Ani in a weekly dance class. While my ulterior motive was to improve her balance, depth perception and stamina, her love of movement made this choice a natural for her. Even though she struggled every once in a while following simple dance routines, she enjoyed bouncing to her own rhythm.
• Hippotherapy: Ani began weekly horseback riding lessons as a way to improve her mobility. Initially, the size of the horse frightened her, but soon she developed the poise to ride and care for a horse. She took hippotherapy lessons for years, benefitting from the one-on-one relationship between her and her trainer.
• Special Olympics: She became an avid member of Special Olympics trying nearly every sport possible. Ani has been in Special Olympics for 14 years and enjoys competing and socializing. Now she is now a role model to the younger athletes.
INDEPENDENT EXPERIENCES : A PLAN FOR ANI
You will note that all of the structured activities, while crucial to Ani’s growth, involved a fee and required a weekly time commitment. In addition, most of these activities were on the weekends or in the evening. What could Ani do during the long, lazy days of summer to keep her happy and learning and were low in cost or free?
• Slip N Slide/Inflatable Pool: Knowing how much Ani loves water, we purchased the iconic Slip N Slide and a simple inflatable pool. I set them up in the backyard and Ani was busy for hours; discovering all the ways in which she could play with water.
• Shaving cream: I bought several cans of inexpensive shaving cream and let her “decorate” the backyard. She thought it was particularly funny when I would squirt her with shaving cream as she belly flopped on her Slip N Slide!
• Puzzles: To help Ani with her spatial reasoning, I purchased several large piece puzzles from rummage sales. Initially, Ani found the puzzles frustrating, but eventually she grew confident in her ability to put them together.
• Swing: We bought an adult swing set and had it professionally mounted. Ani lacked sensory integration; the swing helped her organize her thoughts and emotions.
• Biking: Alisa, Ani’s behavior therapist, taught her how to ride a two-wheeled bike. At first, Ani had a tricycle, and then graduated to a bike with training-wheels. She had no desire to move to the next step. Alisa insisted it was time and in one afternoon, had Ani riding a bike!
• Yoga: Ani and her therapist, Cheryl, practiced yoga in our living room for hours. Ani rose to the challenge of trying to imitate the poses. She found some of them to be confusing; however, she persevered and built flexibility in those tightened muscles.
LOOKING BACK : A PLAN FOR ANI
While the structured activities and independent experiences were positive and assisted Ani in fun and learning, here’s what I would do if I had it to do all over again:
• Connect with local special needs parents: In the beginning, I didn’t have a network or support group other than Ani’s therapists and teachers. I encourage you to ask teachers or your local Special Olympics chapter for names of parents in your neighborhood with whom you can bond. Set up a time to meet and come with some entertaining ideas that your children could possibly do together; it could be something as simple as walking around the high school track. In this way, you and your child are sharing experiences with someone who understands your situation and wants to grow with you.
• Field trips: Call your local police station, fire house or pet store. Many neighborhood community members will give you a tour of their work area and explain their job. This is a wonderful way to teach the valuable roles that law enforcement, firefighters and other community members play in your neighborhood.
• Volunteer: Find a cause you believe in and bring your child with you. Our local chapter of Junior Women has volunteer opportunities that Ani and I did together: folding clothes for the village rummage sale or serving coffee at the Holly Days Art and Craft show. Don’t wait; the sooner your child is a part of a cause, the sooner he/she will be connected to the community.
• Quiet time: Because I was so aware of Ani’s deficits and all of the things she needed right now, I didn’t learn, nor did I realize, that quiet time is as vital to growth as stimulation. Create a summer routine where, for 30 minutes or an hour, your child will rest. Have your son or daughter create his/her own space: it might be curled up on the couch with a favorite blanket or; it might be on a nap mat holding a special toy; listening to soft music or tape ocean breezes. Both of you need quiet time to recharge, renew and refresh.
ABOUT THE AUTHOR:
Peg Grafwallner adopted Ani from a Bulgarian orphanage when she was five years, 11 months. Not knowing what to do or where to go for assistance, her family began a journey to learn, ask and eventually educate. There were extremely dark times when they felt completely alone. But, Ani’s inspiring smile and beautiful spirit has kept the family grounded.