Advocating for Your Disabled Child at Public Schools

By Barby Ingle, PNN Columnist

With school starting in the coming weeks, I have been thinking about the special assistance I recieved as a child and how hard my mom and family had to fight for the help I needed. As a child, I was diagnosed with a severe learning disability and had to take special education classes through middle school and have special provisions and testing in high school and college.

According to the U.S. Department of Education, about 5.5 million children with disabilities receive special education and related services, and are protected through the Individuals with Disabilities Act (IDEA). Some kids with special needs do not qualify under IDEA, but are served under Section 504 of the Rehabilitation Act of 1973.

If you are a parent with a disabled child, you may need to inform school administrators that IDEA and the Americans With Disabilities Act (ADA) establish a legal premise that ensures that children with invisible disabilities are afforded the same rights and access to services as children with other disabilities.

Being a part of this system has given me some insight as to how it works. For instance, my parents had to fight for my right to special education teachers and sessions. It should have been much easier for me to get that assistance, but in the 1970’s schools often didn’t want to help.

Federal law prohibits discrimination based upon disability. I eventually got the care I needed, but had to switch from private school to a public school, and my parents had to file and win a lawsuit for the special needs program to start at my elementary school. Their activism not only helped me, but all of the disabled kids that also needed assistance.

What Section 504 Requires

Section 504 is now commonly used across the country for children with learning disabilities, but I still hear of cases where a child has a chronic illness and their parents have to fight for access to a special needs program.

Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled. It’s purpose is to give children the tools they need to prepare them to be adults who can participate in society through employment and independent living.

A child with a pain disease, disorder, syndrome or condition is protected under Section 504 if they have a physical or mental impairment that substantially limits one or more major life activities. Special assistance should be individualized to your child’s specific needs. This includes deciding how many days they go to special sessions, if they are in the main classroom full-time or part-time, if they get to take their tests in private rooms or have someone read to them the questions, and being allowed to respond verbally if writing is difficult for them.

Many children with chronic pain match the legal definition of a disability, which qualifies them to be protected by federal laws in school and in society as a whole. Even though the pain can’t be seen by others and is subjective, these kids are protected under the law.

How to Help Your Child

A child with chronic pain or an invisible disabling illness will experience physical, social and emotional challenges. You can help educate administrators, teachers and classroom aides about your child’s condition by giving them a list of symptoms and special needs. Be sure to include invisible symptoms and how the child learns best. For instance, they may need a quiet area where the lights are lowered during testing to help them concentrate. Or a child may need to wear sunglasses if they experience migraines.

A parent can also list their child’s strengths, aspirations, likes and dislikes. You should be prepared with medical documentation to educate staff about your child’s conditions and be prepared to appeal decisions made by the school if they are not providing what it takes to assist your child.

Know which kind of special accommodations are needed and should be available. Does your child need adjusted class schedules or grading, behavior management support, extended time on tests and assignments, modified textbooks or audio-video materials, reduced homework or classwork, verbal or visual testing, or technology aids?

Some children may also need help making the transition between homeschooling, special classes and regular classes. It is your responsibility as a parent to stay on top of this and keeping all involved in the loop. Remember, you are the voice of your child and can speak up at any time throughout the year.

Unlike when I was a child who started in private school and had to switch to public schools to get the assistance I needed, today students with disabilities who attend charter schools have the same Section 504 rights as those who attend public schools.

My final tip is to keep a positive attitude when facing challenges and use your right to appeal school decisions when appropriate. Keep track of your child’s progress and advocate for additional services or changes when needed. These needs may change over time. I needed more assistance and help up until 9th grade, and as I learned and grew my plan changed.

From kindergarten through college, keep an eye out for when changes are needed or when services need to upgrade or downgrade, and whether something your child needs is being neglected. For more information and assistance, contact the National Education Association.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.  

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Teaching Children How to Cope with Pain

By Dr. Lynn Webster, PNN Columnist

Summer is upon us and so is trauma season. Emergency room visits for children with traumatic injuries can double during the summer. Potential injuries range from insect and animal bites to serious bicycle and ATV injuries.

This means parents will be on the front line, triaging each event to determine which injury needs medical treatment and which requires "only" emotional support.

A mother recently asked newspaper advice columnist Amy Dickinson about the best way to handle her toddler's pain. The mother was seeking suggestions from a stranger because she disagreed with her husband’s approach. She wanted to learn the "right" way to respond to her child's injuries.

The mother said she felt the need to provide the hurt child with ice packs and hugs, regardless of the extent of the injury, because that felt nurturing and productive.

On the other hand, the father thought his wife was making too big of a deal out of their child's pain. He believed that coddling children deprived them of the opportunity to grow into self-sufficient, resilient adults.

The columnist advised the mother that "tender gestures are an important part of parenting." Show your children that you care about their pain, Dickinson suggested, but don't turn each incident into a melodrama.

The mother's question grabbed my attention, because treating a child's pain is an omnipresent issue with far-reaching implications. By the time they reach age five, children have developed the way they will address adversity for the rest of their lives. Obviously, how a parent responds to a child’s injury -- their attitudes and behaviors -- is part of the culture that helps children form that foundation.

Options in Soothing a Child’s Pain

An overly doting, anxious parent can reinforce a hyperbolic response to pain that has little to do with the actual injury. A small "ouchie" can become a catastrophic event, and that may contribute to learned anxiety and the perception of greater pain.

On the other hand, ignoring an injury can lead to more aggressive attention-seeking behavior. Children need to know that an empathetic adult cares, even if the injury is relatively minor. Feeling safe positively influences a child's experience of adversity.

Children who have the emotional and cognitive ability to understand and determine their response to an injury generally suffer less. This is self-efficacy, and it allows the child to feel in control.

It's important to help children master their response to pain in age-appropriate ways. Of course, you comfort your pre-verbal children with a calm, measured voice and attitude. When children can communicate verbally, you can begin asking them whether their injury is a big one or small one. Then ask the children how they can make themselves feel better. This is how to nurture their resilience.

Accepting Pain

Experts who study why some people seem to handle pain better than others believe that acceptance plays a major role. There are two kinds of acceptance: acceptance with resignation and acceptance with resilience. 

Acceptance with resignation, or learned helplessness, steals hope more thoroughly than pain itself can do. A resigned person feels incapable of solving the problem and simply gives up.

Acceptance with resilience, on the other hand, makes it possible for a person to reinvent himself or herself to resolve the problem.

Children must learn how to accept pain with resilience so they can quickly, and without drama, move on from it. This requires a mutually caring relationship with the parent or guardian.

Big hurts, medium hurts, and small hurts may require different treatment, but not necessarily a different emotional response. Fundamentally, children must realize that everyday hurts are problems with solutions.

I recently watched my daughter instinctively demonstrate this behavior. My granddaughter, Gracie, fell and bumped her knee. The three-year-old began to cry. My daughter then asked Gracie: “is it a "big ouchie" or a "small ouchie?"

The question redirected Gracie’s attention. To my surprise, Gracie answered in a soft and shaky voice, “a small one.” Gracie received a hug from her mom and seemed to forget about the incident.

The Goal Is a Resilient Child

Pain is part of growing up. Parents cannot prevent injuries from occurring with their children, but they can model how to accept the injury with resilience.

To paraphrase Viktor Frankl, we have the power to choose our response to adversity. Relying on ourselves gives us control over our behaviors and happiness.

When parents can model self-efficacy without dismissing a child’s fears or insecurities; the result will be a resilient child who is able to experience pain as part of life, but not mistake it for life itself. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. Lynn is a former president of the American Academy of Pain Medicine, author of the award-winning book “The Painful Truth” and co-producer of the documentary “It Hurts Until You Die.”

You can find him on Twitter: @LynnRWebsterMD.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.