I met a mom today who has a seventeen-year-old son who wants to be autonomous. Dad doesn’t want to let his son go out for spring break. Mom thinks that it is good to let their son go out. She feels if they raised their son right, he will make the right choices. As I was listening to this dear mom tell her story, I found myself relating to her.
How could I relate to this mom raising her healthy son? I am a special needs mom raising a non-verbal six-year-old son on a ventilator. As different as we may seem, we face the same struggle; being a parent.
When my son Samuel was three years old, my husband wanted to take him to the park. Every time he asked, I would say “No.” I was an overprotective even fearful mother who did not want to allow for any unforeseen circumstance to arise from such a venture.
Then an opportunity presented itself which we could not pass up. Through the kindness of the Make-A-Wish Foundation, we were given a vacation to Disney World Orlando. For seven days, we went to theme parks and restaurants taking Samuel out up to three times a day. We learned how to have a checklist making sure we didn’t forget any of his emergency equipment. There was only one time we forgot his diapers when we were at a theme park. I was extremely thankful when another mom gave me one of her daughter’s diapers!
At one point, we were standing by a large pond as the sun was setting. I could hear the sound of Samuel’s ventilator as he lay in his stroller sleeping. I looked out over the pond and thought, “Are we crazy?” We were miles from the car, even more miles from a hospital and a thousand things could go wrong, yet here we were. However, nothing went wrong. No emergencies. No mishaps. We didn’t even get lost!
After we returned home, my husband asked me if we could go to the park now. I wanted with all my heart to say, “No” again but what was my defense? We had just come back from seven days in Orlando. I finally said,”O.K”. We went to the park on a beautiful brisk sunny day. The birds were singing and Samuel was snug in his bouncer under a tree. Again, nothing went wrong. It was a new beginning.
“Did you see my son hit that baseball out of the park!” the excited father yelled to everyone in the stands. Everyone stood at the same time watching the boy run from base to base and then slide to home plate.
“Safe”, the umpire declared.
Everyone erupted into a wave of cheering and triumph as the play won the game for the team.
The father was understandably proud of his son. We parents cheer whenever we see our children triumph. Some parents though are experiencing a different journey where victories for their children are not so clearly seen. There is a whole world of special needs parents raising their children and also cheering each victory. In our family we are living the words, “I can do all things through Christ who strengthens me.” The victories we experience are quite different from an able bodied child. Though different, each victory is celebrated as if the child hit a home run.
Ask any therapist of special needs children and they will tell you that the smallest victory is cause to celebrate. Therapists are schooled to be patient as they wait for these wee ones to display even the most inconsequential accomplishment. For one child it may be eating their first bite of solid food. For another it may be grasping a toy for the first time. Able bodied children also experience these first’s but for many special needs children these victories are years in the making.
Each journey for a special needs family is different. Some disabilities are mild while others are profoundly debilitating. What is the same of all these children is that most parents are fiercely proud of their children no matter what the diagnosis. My husband calls our son’s diagnosis an example of God’s alternate construction. He looks different but he is still fully made by God.
What would special needs parents want other parents to know about their children? That we face struggles, although not the same, as other parents. What is the biggest compliment you can give a special needs parent? Pay attention to their special needs child. Talk lovingly to the child even though they may not be able to respond. How can you support special needs parents? If you are curious, ask about the child’s diagnosis instead of wondering and never knowing. Ask the parent what their biggest blessing is in raising a special needs child. Ask what their biggest need is and how you can help. It may be to pray for an upcoming doctor’s visit. Listening can be the best gift you can offer. Many parents have no support group with which to share their joys and struggles. Simply knowing that you care can mean so much to a special needs family. In our church, we have some very special people who thoughtfully buy our son diapers every year. The next time you see a child who is a little different be bold and reach out to the parent. You will be glad you did.