My nephew Jon Alex has been one of the most influential people in my life. The remarkable thing is that he has never spoken a word to me… or anyone. He lives his life by example, and he constantly amazes me. Jon Alex (J.A.) was born 14 years ago to my sister Becky and her husband, Jeff. He arrived about 2 weeks before my daughter Olivia was born. He was a perfectly sweet, adorable, and typical baby boy, if a bit more handsome than most. He developed on schedule until he received immunizations, then everything changed. After that point he did not progress properly. He did not crawl, or climb, speak, or mature as typical children do. At his current age of 14, J.A. is unable to speak or walk independently. He requires total care for all daily activities and he is completely dependent on the people who love him to care for him.
It was painful for our family to see him falling behind, and then to realize that he would never be “typical”, but it was excruciating for my sister and her husband. Early on, Jon Alex and Olivia shared some birthdays, but it just became too much when she got the bike and he didn’t. I don’t think parents of typical kids can understand the profound challenges and unspeakable heartache that special families endure. The death of dreams, the isolation, the cost, the medical hurdles, the humiliation when insensitive people stare, point, and judge; it is simply overwhelming for these families, and there are more of these families than ever.
Jon Alex has cerebral palsy. He is also on the autism spectrum like an increasing number of children born in the last 10-15 years. The statistics are staggering and unsettling. According to a new study by the Centers for Disease Control and Prevention, the incidence of an autism spectrum disorders diagnosis is 10 times more likely than it was 10 years ago. Currently, one out of every 110 children born in the US is considered to have some form of autism. Many experts believe that number may continue to rise. The rising rates of autism are being reported worldwide. The number of children being diagnosed with autism now exceeds new cases of pediatric AIDS, diabetes and cancer combined. The statistics are sobering and my deep concern is that Goodness is not keeping pace with the needs of families with autism and other special needs kids.
People are often at a loss as to how to respond when they see a child with special needs. Jon Alex has taught me that every child, no matter how impaired, loves to get a smile and a hello. Even if the person seems far away or unable to understand, a wave or a smile makes the situation positive for all. How much better do you feel when you get a smile or a greeting from someone? How would you feel if you were stared at, laughed at, or avoided? Special kids can feel the energy and attitude you put out toward them. They are generally very sensitive to their environment and need to feel safe and unthreatened. If you approach with confidence and a smile, giving them plenty of personal space, then everyone is more likely to feel at ease. You can also take cues from their parents or caregivers who know them best. Ask if you can approach and say hello if you are unsure. Don’t miss an opportunity to encourage a special needs person and their caregiver by giving them the same kindness you would anyone else. Just smile and say hello!
Another struggle that special kids have is feeling left out. Everyone needs to feel important and included. Don’t be afraid to include a special kid in your party plans or an outing. Most games and many outings can be adapted to assist those with special needs. Make sure to talk to the child’s parent or caregiver about special dietary restrictions as this is often an issue for these kids. Teach your typical kids to look out for special needs children and be their friends. These special kids are amazing people living in limited bodies. Jon Alex loves to go bowling using a special ramp and some assistance. It is a joy to see him having fun along with everyone else.
Consistently, special needs families report that the place they feel least welcome is church. Often special kids make noises or can be unintentionally disruptive, but this should not limit them or their families from being a part of a spiritual community. If your church does not make room for special kids, encourage them to rethink this need. These families are some of the most overburdened and confined members of our communities and they need safe places to go and feel loved and supported. Because of Jon Alex, my sister and brother-in-law have created a special church service for families of special needs children which they host once a month. At these services everyone can feel at home. Noises and disruptions do not matter and everyone is included. What a source of Goodness it is for so many! If you want to know more about this service and the many ways they help the special needs community, please check out their website. http://www.risingaboveministries.org/
Getting to know my nephew Jon Alex has required me to use other skills besides language. I watch him carefully, study his reactions, learn his likes and dislikes and what makes him feel happy and safe. What I can tell you is that even though he cannot speak to me, he is constantly communicating. He is present and aware and he lets me know how he feels about me and about his world. His limitations have stretched me out of my comfort zone and out of my “typical” world. He inspires me and teaches me that we all have a purpose and a destiny. He makes me reach beyond myself and reminds me that we need special people to teach us the deeper truths in life – things like understanding, selfless love, and the beauty of just “being “ –not stressing and striving, but being. Please don’t miss out on giving and getting Goodness from the special needs world. They will teach you their secrets, if you will listen.
A “Good” Idea:
Look for ways to reach out and include people with special needs in your world. Challenge yourself to step out of your comfort zone and give some Goodness to the next special person you see. It will be good for you and them!