What’s In a Name? Labeling the “Different” Child

         Today’s a big day, full of testing and exams at the local children’s hospital. Unfortunately, this has been a too-common occurence in Ethan’s 5-year-life. He has a variety of special needs and doesn’t grow normally. In fact, no one believes me when I tell them he’s turning 5 this month because he’s so small. Our other three children are healthy and normal size, tall even. Yet with Ethan, things have never been straightforward.

           I thought it would be the perfect time to share an article I wrote last year about our quest to find a diagnosis.

What’s In a Name? Labeling the “Different” Child

          From the moment he was born, Ethan was different. He scowled at cooing strangers and cried when they tried to make him laugh. Even at 3 ½, he was content to sit for hours staring out the window. He disliked other children and chose to throw screaming, hitting, headache-inducing temper tantrums rather than use his extensive vocabulary to express himself. Dozens of doctor’s appointments got us nowhere, with advice ranging from “he’s normal” to “he’s needs serious help, but I can’t help you.”  We were going nowhere fast and I was running out of patience.

            I knew what I wanted: real, concrete answers. I wanted a label, something that would explain his unusual behavior and tell me what I needed to do to help him learn and develop. This magical diagnosis would end the wild emotional rollercoaster I had been riding since his birth. Next time he started screaming uncontrollably at a play group or restaurant, I could simply bring out the label and the other parents would understand. There would be therapy sessions and special schools, and my difficult son would be “fixed.” Right?

The Argument For Labeling

             The US has more programs, services, entitlements, and laws for people with disabilities than any other nation or at any other time in history. In order to gain access to these programs, a diagnosis by a health care professional is required.  No label, no support.

            Another reason why a label may be useful is when explaining a child’s odd behavior to others. “For autistic students, I actually think [a label] is helpful for those around them (kids and adults) to be able to understand the unique characteristics that they possess,” says Gena Penland, a mother and former teacher from Tampa,Florida, who taught autistic students before the birth of her son. “Lets face it, a lot of times, those kids appear very weird to those around them and this gives them a way to understand why they are behaving that way. It gives everyone around them a preconceived notion as to what the child is going to be like. However, as soon as someone gets to know the child, they are able to see the personality over the disability.”

            Early intervention and therapy programs are life changing, teaching disabled children the skills they need to grow and develop to the point where they may one day be able to care for themselves and live healthy, independent lives. “The funding and services available to those with the label are much greater than those without,” Penland said, “Once you are diagnosed with autism, it opens a lot of doors for individual therapy, special schools, etc… that would normally not be available.”

            Jill Orr, a mother of two and former teacher living in Las Vegas, Nevada, found that her son Renin’s autism diagnosis opened countless doors to him that were firmly shut before. Orr knew there was something not quite right about her child from the time he came home from the hospital. “He cried all the time and wouldn’t nurse,” Orr said. “Renin was an all around difficult kid.” As he grew older, he wasn’t talking or developing as his brother had. She took him to numerous pediatricians and specialists and received 8 different diagnoses. Some doctors told her that her son would simply outgrow his issues. Others warned her he would never be a functioning adult. In the end, she knew that her son was autistic.

            Labeling her son made him eligible for therapy programs and special help in school. It also helped her learn how to handle her son’s differences. “It’s made me more patient,” Orr said, “I quit thinking it was my parenting, so I could replace the guilt with knowledge. I quit feeling guilty. It has made getting help so much easier. I knew where to go, what to read, what success stories to listen to, and what to filter out.”

Being Defined by a Disorder

             Was I searching too hard for what was “wrong” with Ethan, and not paying enough attention to what was “right”?  Who was this ideal child I wanted him to be, this perfect kid whose every characteristic was right on for their age group? How realistic was that anyway? If I labeled Ethan as antisocial and mentally delayed, was I causing others to view him this way as well? How would this effect his developing self-image?

            It turns out, there are quite a few disability professionals who adamantly believe that labeling a child is detrimental. Author and disability-rights activist Kathie Snow believes it’s wrong to label kids because they tend to become defined by their disease or disorder rather than by their unique personality, characteristics, or talents. “How many individuals with disabilities have asked to be segregated, treated, poked and prodded, excluded, or told they don’t meet someone else’s definition of “normal?” she says. “Like gender and ethnicity, disability is simply one of many natural characteristics of being human.”

            Snow’s son Benjamin is different. He is wheelchair bound, but that hasn’t stopped him from playing sports, excelling at school, and enjoying a fulfilling life. “Tools, accommodation, and support—not achieving normalcy or an artificial level of readiness—are what people with disabilities need to be successful,” Snow says in her article “Disability is Natural: Revolutionary Common Sense for Parents” (http://www.disabilityisnatural.com/). “When we believe disability is natural, we’ll recognize having that a disability simply means a person has a body part—legs, arms, eyes, ears, brain, or whatever—that works differently.  That’s all! We’ll know a disability cannot define a person’s potential, humanity, or character.”

            Disability shouldn’t run a child’s life, nor should it define who they are. They are more than their disease or disorder.          The Developmental Disabilities Assistance and Bill of Rights Act sums it up quite nicely: “Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to enjoy the opportunity to live independently, enjoy self-determination, make choices, contribute to society, and experience full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society.”

            The old adage “actions speak louder than words” speaks volumes when it comes to labeling. A label can be embarrassing and emotionally damaging to a child. They are busy developing their sense of self and where they fit in within their world, and are being bombarded with the idea that there is something wrong with them. This has huge consequences for their self esteem and the effects may last for a lifetime.  Labels often inhibit others from getting to know a child personally, and can limit their opportunities. Labels stick forever.

            A child’s disability is just one of his many characteristics. He’s also smart, funny, cuddly, and adorable. How must it affect him to always hear there’s something “wrong” with him?

Finding Balance

            A disability is not a curse. It doesn’t make a person bad, wrong, or inferior. It’s merely a part of their body that works differently from that of other people. According to the US Census Bureau, 19% of the American population had a disability of some sort as of 2005. That’s nearly1 in 5 people.  There’s nothing unnatural about it.

          I wanted a label for my son, Ethan, so that I could learn how to best help him learn, grow, and develop. I wanted to understand what was going on in his head when he threw an uncontrollable fit or cried for hours on end. Doctors, therapists, psychologists, and teachers are available to us now that we have a diagnosis that never were before. Ethan is exactly the same child he was before, but the label makes the medical world listen to us.

            His diagnosis also raised many more concerns. As our pediatrician detailed all the types of therapy available, my mind started racing. There are four children in our family. How would I devote adequate time to each of them if I was taking Ethan to hours of therapy each week? What about taking the other kids to school and letting them participate in extracurricular activities? How would I help my “different” son without making it all about him? How could I let each of my kids live a normal childhood and keep them from resenting Ethan for being different?

            Kathie Snow experienced this dilemma with her son Benjamin. “I did what I had to do to ensure our family’s harmony, peace, autonomy, and privacy,” Snow said, “We replaced therapies with more natural activities that worked for all of us and still met my son’s needs.” Hours of therapy for one child can shortchange the other family members. Snow recommends learning from the professionals, then finding activities that help your child’s development while allowing the entire family to be involved.

            Jill Orr takes her son to social club at school to improve his social skills 2 days a week and has replaced traditional occupational therapy with kung-fu classes. Her sons are able to take these classes together and bond. They’ve also done music classes, horse therapy, and tutoring together. It’s important that they both feel involved and important. Most importantly, “it has to work out for your whole family,” Orr says. It’s not only about how the child with the disability reacts. It’s about how the family learns to function and grow together as a unit.  

            Gena Penland understands the challenge families face when balancing the special needs of one child with those of the family. “I think that has to be a decision that each family has to make. They have to find a way to give each child what they need without imposing on the others,” she says, “My advice would be to evaluate the therapies and activities that are most important/helpful and go from there. If a child has an obvious behavior issue (aggression, violence) then that needs to addressed to be sure the rest of the family is safe!”

            Ethan will most likely never love being around people or go out of his way to make friends. He’ll be the man who likes to be left alone and do his own thing. He will face many challenges in his life, and the best thing I can do as his parent is to accept him for all his quirks and eccentricities and find ways to help him overcome his challenges. With the right support, tools, and accommodations I’m sure he will thrive.

            My end-all goal isn’t for him to be exactly the same as everyone else. It is something simpler, something I hope for my other children as well: happiness, independence, and acceptance. Ethan will always be different, but he’s my son and I can’t imagine him any other way.

October 4, 2011 | Categories: Parenting | Tags: Autism, Autism spectrum, Child, Child growth disorder, child with special needs, Developmental disability, Disability, Health, Mental Health, Social Anxiety Disorder, United States | 5 Comments »