Sometimes, explaining chronic pain to youth in pain is difficult, especially when the cause of the pain isn’t clearly visible.

This hardcover book helps kids understand that people with chronic pain conditions often need special care, but that doesn’t mean they don’t like to have a good time. It talks about ‘Aunt Barby’ coming for a visit and how to get the house ready for a special kind of guest.

Aunt Barby's Invisible Endless Owie

Rehabilitation Act

Rehabilitation Act PDF

 Section 504 Section 504 of the Rehabilitation Act is a civil rights law. It prohibits discrimination against individuals with disabilities and ensures that a child with a disability, e.g., RSD/CRPS, has equal access to an education. The key portion of Section 504 of the Rehabilitation Act at 29 U. S. C. § 794 states: Section 794. Nondiscrimination Under Federal Grants and Programs (a) Promulgation of nondiscriminatory rules and regulations. No otherwise qualified individual with a disability in the United States, as defined in Sec. 705(20) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service . . . Section 504 protects all persons with a disability who • Have a physical or mental impairment that substantially limits one or more major life activities • Have a record of such an impairment • Are regarded as having such impairment Under Section 504, a child may receive accommodations and modifications if his/her impairment substantially limits the ability to learn, Children with RSD/CRPS may be entitled to special services under the Individuals with Disabilities Education Act (IDEA). IDEA requires the school to provide an individualized educational program (IEP) that is designed to meet the child’s unique needs and provides the child with educational benefit. Fewer procedural safeguards are available for disabled children and their parents under Section 504 than under IDEA.

Tips on Taking Your Child To The Doctor

  • power of painTalk to them prior to appointments, and let them know what they will be facing. Ask them if there is anything you can do to help them. For instance, when getting a shot do they want you to hold their hand or give them their favorite teddy bear to hold?
  • Children tend to be afraid of the unknown. If you are able to have other children who going through similar treatments speak with your child, they might have some great tips. You can  always ask your doctor for a referral to other patients and their parents going through similar circumstances.
  • You can help your child become familiar with the surroundings of the doctors’ office or hospital setting by   going early to walk them around the area. Getting the child familiar with the surroundings creates a more positive situation.
  • Let your child choose how to control their situation when possible. For example, give them the option of when the procedure will occur (Monday or Wednesday), which arm they want the IV inserted into or what reward they will get for following nurses directions.
  • You have to be their advocate with the healthcare world, the school system and all social settings. If they feel that you will not stand up for them or with them, their behavior may turn negative more easily and more often


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Parents Perspective

It is usually shocking and unexpected when you learn that your child has a chronic pain illness and that it can last a lifetime. Parents often feel a sense of devastation, uncertainty of where to turn, powerlessness, and uncertainty for your child’s future. Many adults with chronic pain have trouble coping; it seems cruel to have to watch a child go through its effects. Unfortunately, anyone at any age can be affected.

A child may feel more supported and loved if you educate yourself about what they are going through. Helping your child through the stresses of life is something good parents do already. Chronic illness patients deal with more stress than healthy people. Taking on the issue of stress reduction in your life and theirs is important.

Positive Reinforcement


Remind them of what they can do well despite the condition and that you are proud that they are trying hard to get through a rough situation. Try to not become a hostage to the pain. Keep in mind that just because the child is in pain does not mean it is always a level 10.

Take advantage of the time their pain levels are low by planning fun and interesting activities that offer a rewarding experience. Mastering activities of daily living can raise a child’s self-esteem and pride.

Helping Your Child Day To Day

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Helping your children through predictable periods of stress can be done by:

  • Creating a plan and keeping to a routine
  • Watch how you react to a situation or bad news as children can take on your stress
  • Speak to your child about their illness
  • Let the child know that they are not going through this as a punishment.
  • Be sure to use age appropriate terms and prepare them for what is coming up in the immediate future.
  • When having these conversations with your child emphasize their strength while dealing with the situation
  • Gauge what you tell them by the types of questions they are asking
  • Children typically will give you signals that they are ready to assume greater responsibility
  • Check with their school to see if you can come in for an assembly and explain what is going on with your child.

Faces Of Pain

Pain is subjective, but using these descriptors and pictures can help parents understand what their child’s pain level is. Keep in mind, as pain patients continue with pain, they learn coping mechanisms which help them have a difference face on the outside, so find out how they feel inside.

10– Worst Pain That You Can Think Of

9– Can’t Do Any Regular Activities Because Of Pain

8– Strong, Terrible, Horrendous

7– Unable To Do Most Actions Because Of Pain

6– Dismal, Stressful Upsetting

5– Unable To Do Some Actions Because Of Pain

4– Distressing , Unpleasant, Bothersome

3– Can Do Most Actions W/Rest Periods

2– Mild Aggravating Pain

1– Pain Is Present But Does Not Limit Actions

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