Label and Limit — How the World Views Special Needs

For parents of children with special needs, the diagnosis they are given for their child is like receiving a life sentence...

Autism. Cerebral Palsy. Developmental Delay. Epilepsy. ADHD. Brain injury. Learning difficulties. Trisomy 21 and other genetic abnormalities.

These terms are frightening and would make any parent of a young child shudder. Can you blame them?

I am the Chief Innovation officer for Doman International, a nonprofit organization that gives knowledge and tools to families of children with special needs to help them reach their fullest potential in life. Working with these families for the last dozen years, we have heard similar stories from them of how they learned about their child’s problem.

In most cases, it was Mother who first felt the child had a problem. Mother brings her child to the doctor and says, “I think my child has a problem.” Usually, the doctor reassures Mom that the child is fine and that children all develop at their own pace. He says to continue bringing the child back for regular checkups.

 

Mom continues to badger the doctor at each and every visit until the physician agrees to run testing. Testing is performed, and the diagnosis is delivered. At this point, Mother is usually told that her child has a developmental disability, and that there is no cure. Mother is left with no hope.

shutterstock_668562868.jpg

In the hopes of finding answers, parents will go online and search for solutions. There, they will also discover that there is no hope for their child and their condition.

This is practice that many people call: Label and Limit. Stick a label on a child (the diagnosis), then limit what that child can achieve.

I heard a story from a family at Doman International who experienced this, but which had a happy ending. The child had been on our program for two years and was doing great. At a regular doctor’s visit parents were told that they should consider doing genetic testing. The chromosomal testing was performed and sent to a geneticist to review.

Parents were called to the geneticist’s office to hear the results, but they did not bring the child. In fact, this geneticist had never seen the child before. Parents sat down and were told, “Your child has a rare genetic condition. There are only five known cases in the world with this specific chromosomal abnormality. Unfortunately, we know from these five cases that your child will most likely never walk or talk.

Parents smiled. They said, “We’re glad that are son isn’t here to hear this, because he says hundreds of words, speaks in sentences, and runs 2km daily.”

This illustrates the culture of label and limit. When we decide that a child will be never be like other children, the way we stimulate, interact, and encourage that child completely changes. Parents are told by professionals, “Your child has a developmental disability. Your child will not be able to understand or speak like other children. Your child will likely never live an independent life.” From the moment that parents are given this horrible news, they begin treating the child in a different way — this can dramatically affect a child’s development, especially when we consider that a child’s parents are the most important teachers for their lifetime.

I’ve often considered the following concept: what if I approached the scientific community with an idea for a new study to be performed on child development? The proposal would be this. We would take new groups of healthy, neurotypical children. In the control group, we would tell parents that the children were healthy. In the experimental group, we would tell the parents that their children had severe developmental delays and would not learn, speak, or move like other children. The physicians would tell these parents not to bother trying to stimulate these children because they don’t have the ability to comprehend or understand at a high level.

No university would agree to perform such a study. I would be told that such a study would violate all the rules of bioethics. Some would call me cruel or evil, and that would be true. However, can I propose that the very scenario that I mention above happens every day to children with special needs? So why is it evil if I limit a well child from developing, but somehow it is acceptable to do it to a child with special needs?

At Doman International, we don’t label and we don’t limit. We understand that all of these children with developmental disabilities have neurological conditions, some mild and some severe. However, we know that the principles of neuroplasticity allow the brain to develop and adapt when provided with stimulation and with lifestyle changes. Instead of limiting children, we acknowledge that the child has a problem that is in the brain. While this might sound sad to some, it is not sad to us — because we know the brain can change and develop. It’s an amazing organ that can recover. Neuroplasticity has been documented in hundreds and hundreds of scientific studies and is a known phenomenon.

My grandfather, Glenn Doman, understood this well. When he wrote the book, “What to Do About Your Brain Injured Child” in the 1970’s, he made a controversial statement that the “brain grows by use.” My grandfather was a pioneer in his day.  He received plenty of criticism at the time. The concept of neuroplasticity is now well understood and respected. The concept that the brain can change and develop is no longer a position we need to defend, it’s a position we need to advance.

If your child has been given a label, don’t allow it to hold you back from getting your child help. Don’t allow it to stop you from providing your child with the stimulation and opportunities he or she deserve in life. The next time someone tells you that your child has limits, and you should remain within those limits, just reply, “No thanks. I’ll stick with neuroplasticity.”