What is it like to parent a child who has a brain injury, as well as cerebral palsy, autism, epilepsy, Down syndrome, attention-deficit disorder and/or developmental delays?
It’s impossible to begin to talk about children with special needs without addressing their parents’ biggest questions: What is wrong with my child? Where is he hurt? How much is he hurt? How did he get hurt? And, most important of all, what can we do about it?
Parents spend years trying to find the answers to these questions because there are more than 350 symptomatic labels used to describe brain-injured children. Unfortunately, these old-fashioned labels are all considered incurable diseases. A symptomatic label does not tell parents where the problem originates, why the child may have the problem he has or the underlying cause of the problem. Tragically, it can delay or postpone appropriate treatment, which may be lifesaving.
Developmental delays, cerebral palsy, autism, epilepsy, hyperactivity, attention-deficit disorder— and hundreds of other such labels— merely describe symptoms. However, all of these children with such special needs are actually brain-injured.
A good brain can be injured at any point in life. This injury can occur a few months after conception, during delivery or shortly after birth. A child can have an illness that affects the brain or can suffer a head injury. It does not really matter when the injury occurs or the even the nature of the injury. What matters is that the injury occurs in the brain. This means we must focus on the brain if we want to treat the problem effectively. We cannot produce change if we merely try to treat the symptoms. This is one of the oldest principles in medicine. And yet, in the world of brain-injured children it is largely ignored.
Why? Symptomatic labels cause confusion. They keep parents and professionals chasing their tails instead of treating the brain.
Brain injury is in the brain. This may sound quite simple and obvious. While it is, most brain-injured children are not getting treatment for the brain. They are receiving treatment for their symptoms or they are receiving no treatment at all because “autism,” “cerebral palsy” or those other labels are generally considered incurable. And yet, these old-fashioned words actually describe certain kinds of brain injuries.
The brain is the most treatable organ of the body. The brain is not static and immutable, as scientists believed in the beginning of the last century. We now know that the brain is highly plastic and adaptable. It has tremendous recuperative powers when it is injured. Scientists can now demonstrate not only neuroplasticity but also neurogenesis— actual regrowth of the brain after injury.
It is clear that brain growth and development are a dynamic process. It is a process that can be stopped, as it is when severe injury occurs. It is a process that can be slowed, as it is in cases of moderate or mild brain injury. But most importantly it is a process that can be accelerated.
To speed brain growth, it’s crucial to provide visual, auditory and tactile stimulation with increased frequency, intensity and duration and enriched opportunity for mobility, language and manual development, in recognition of the orderly way in which the brain grows.
There are hundreds of ways to stimulate the brain. The Institutes for the Achievement of Human Potential, a nonprofit educational organization that serves children by introducing parents to the field of early child development, has spent more than a half-century discovering ways to provide appropriate and effective treatment directly to the brain. The Institutes has helped children to see, hear, feel, crawl, creep, walk, run, understand, talk, read and write for the first time in their lives.
After seeking treatment for brain injuries, chronically ill children who were spending months every year in the hospital have become healthy. Children who might have spent half their lives on two or three anti-epileptic drugs could potentially retire those medications permanently and without life-disrupting seizures after following a consistent neurological program and a careful nutritional program. Children forced to watch their brothers and sisters have a real life while they wondered why they were denied the same chance could now have a real life of their own.
Parents who come to The Institutes for the Achievement of Human Potential are often asked, “How do you cope with a hurt child?” It is not about “coping,” parents say, nor is it about “learning to live with disability.” Instead, it is about fixing their hurt kid. It is about creating new abilities to help make the child well.
In the end, parents of brain-injured children should not expect a miracle for their child. They should get informed about their child’s needs and seek a fighting chance for their child to get better through the proper treatment. And that is exactly what proactive parents of brain-injured children receive— a fighting chance.