It’s strange to me that I know so many parents now who have a child with a debilitating illness. It’s strange because throughout my own school years, first grade through twelfth, I was aware of only one classmate who was chronically ill. And over 18 years of teaching high school students, I recall only two with chronic illness.
Yet over the course of the last 15 years, I’ve come to know the parents of at least a dozen such children. Children with diabetes, cystic fibrosis, inflammatory bowel syndrome, leukemia … and more. Maybe the increase in auto-immune disease has increased the numbers of children with chronic disease, or my own work with healthcare issues has increased my awareness. Probably, though, it’s because a couple of women I love have children they love who have those diseases, and knowing their experience opened the door to my meeting more and more of these remarkable women.
If you don’t know such women, watch “As Good As It Gets.” There’s that one scene when Carol, the mom of an asthmatic son, finally sees that there actually is a way to get her son the support system he needs. But even though her son doesn’t require the constant vigilance he used to, Carol just can’t relax. She just can’t stop feeling what she calls “that stupid panic thing inside me all the time.”
That panic is what I’ve seen, but praise God, not experienced. I’ve seen the Mom with the three-ring binder detailing what has happened, what could happen, and what should happen, urgently pressing teachers, aides, and bus drivers to read the material, know it, master it. I’ve met the Mom who asked the teacher, “Can I meet with the other children? Can I tell them the signs that mean Henry’s in trouble?” I’ve seen the Mom trying to be pleasant, “professional” with school administrators about her daughter’s illness, but then her voice catches, her eyes fill with tears, and wordlessly she pushes the bulging folder of information across the table.
That panic thing is inside them all the time, but it’s not a stupid panic. One of them can calculate carbs like a math wiz and give you an hour-by-hour reading of her son’s glucose level. Another can reel off the names of 10 different medications, treatments, and procedures her daughter needs throughout the day and how they might need to be modified at a moment’s notice. Yet another knows more than you want to hear about fecal incontinence and how to prevent it.
These women are all master students on their children’s illnesses, but when they try to educate the folks at school, sometimes they get the feeling the school doesn’t care. Sometimes a teacher will say, “I’ve got 23 other children in this classroom. I’m sorry, but I just can’t meet all the needs of your child.” Sometimes a school official will advise, “It’s best not to single your child out, to make her feel different. We try to treat all children the same.” And, indeed, sometimes, for long stretches of time, these children look and act the same as other children.
But they aren’t. Any number of factors at school could jeopardize their lives. The cafeteria could change the school lunch from corndogs to spaghetti and the carefully calculated carb count goes out the window. The child across the aisle could come to school with a bad cold, and endanger the little girl whose medications have suppressed her immune system. The lunchroom supervisor may know that certain foods have ingredients that could put that boy in anaphylactic shock, but the art teacher may not know that her art materials have the same ingredients.
That’s why Section 504 of the Rehabilitation Act exists. In 1973, Congress recognized that children with disabilities are not the same, except in one fundamental way. They have the same right to a free, appropriate public education that all children do. Section 504 requires that when a student has a disability that affects a major life activity, schools work with parents and healthcare providers to identify and implement reasonable accommodations for that disability.
Forty years after the passage of the Rehabilitation Act, the range of accommodations schools offer children is impressive – everything from stop-the-clock testing to a seat closest to the bathroom and from administering medication throughout the day to allowing snacks several times a day. Parents work with school personnel to make sure they know warning signs and what to do about them. Schools send tutors and materials to the home when the child has an extended absence. And that’s just the tip of the iceberg.
I often marvel at the good things our public schools do, but none is more marvelous than the process of developing and implementing a 504 plan that really works. There’s an alliance there between parents and educators that is driven entirely by a shared concern for the child and a commitment to anticipating problems and identifying solutions. That’s the way we should approach the education of all children.
No, a good 504 plan doesn’t make that panic thing inside disappear inside these moms and dads. But it does makes the panic seem manageable. If you feel your child has a physical disability that is affecting his or her education, contact your school district’s Section 504 coordinator. They’re there to help.
This is Mary Sheehy Moe, retired, but still advocating for free, quality public education in Montana.