RARE Parenting: How Can We Help Teachers to Understand Rare Diseases?

CAID stands for Childhood AutoInflammatory Diseases. My organization, StopCAIDnow, covers over 30 diseases under that umbrella. These diseases cause pain, debilitation, impairment and effect every part of the body. Many of these diseases, such as the one afflicting my own son, have no known prognosis. Some of these children have to be homebound and require special educational plans like a 504 or IEP.

The one main hurdle I hear from almost all CAIDs patients and families is dealing with the “you don’t look sick” stigma. So, I took it upon myself to go to different support groups that fall under the CAID category to ask the parents of patients, “What do you want your school nurse and teachers to know about your child’s disease?”

I was not surprised with the amount of responses, but my heart broke when reading them. It is sad enough that our children live in daily pain and have to live in and out of hospital rooms, refrain from most physical activities and still have to defend the validity of their condition.

I have always wondered why anyone would feel that this is a fun or easy life for a child. Do those who judge seriously have no concept of how deeply the intensity of disease can be–and do they truly believe that we feel that struggle is worth the few amenities that children with handicaps might get?

Our children need to be safeguarded. They need to feel secure each day in class knowing that they won’t be humiliated or shamed for making use of handicap amenities, absences or breaks for rest or medication.

When an adult–especially a teacher of part of the school’s staff doesn’t believe a child is in pain, that child has to hide not only in physical pain, but mental anguish for the entire school day.

So how can we get them to this place of peace and security in their daily lives?

• Make sure to check out our IEP Champion blogger, Tanya Johnson’s posts.
• Have your doctors write a note that might help explain the child’s specific diagnosis.
• Ask if your child’s teacher will allow you to come in and speak to the class so that other students can learn about the disease and not be afraid of confused by it.
• If the school has a concert or performance and your child can’t stand long, ask staff to provide a chair.
• Educate yourself on the difference between IEP Plans vs 504 Plans (the Washington EDU.) Learn more here.
• Seek out foundations and organizations surrounding your child’s condition and ask them for any education material they might be able to provide for your child’s school.
• Have your child write their own description “what I want you to know about my disease” so, they don’t have to keep explaining their symptoms to different teachers and staff.