“The potential possibilities of any child are the most intriguing and stimulating in all creation.” — Ray Lyman Wilbur
According to the latest statistics available, there are about 850,000 public school special education teachers and paraeducators in America. They serve 6.3 million children, or about 9.5 percent of Americans between the ages of 6 and 21.
Special education in America got its start in 1975 with the passage of the Education for All Handicapped Children Act, or what is now called the Individuals with Disabilities Education Act (IDEA). It holds that all children have the right to a “free and appropriate public education” in the “least-restrictive environment.”
The law is actually very clever. It requires schools to hold team meetings with staff and parents/guardians to come up with individualized goals and accommodations for each child to access their education. The plans that come out of these meetings are called Individual Education Programs or IEPs. Each child therefore has their own “IEP team,” consisting of at least one teacher, specialists, therapists or nurses, and their parents — each of whom hold equal weight in decision-making.
(Sometimes children use a 504 plan. This comes from Section 504 of the 1973 Rehabilitation Act. A child on a 504 does not have to have one of the specific disabilities listed in the IDEA and typically needs relatively minor adjustments to the learning environment or materials to access school. Read more about the differences here.)
I have had good experiences with IEP meetings and bad ones, but almost always I’ve found that my kids’ school experience came down to staff members’ experience and personalities — no matter what it said on the sheet of paper we would spend hours developing. Rarely have I experienced outright discrimination. People just don’t get into the special education business to be mean to kids. But, often, they just don’t seem to understand what it’s like to raise children with extraordinary needs — all the things that need to be in place to help them thrive, all the stresses we are under. That ignorance is what drove me to write the following list. Do you have anything to add to it? Leave a comment or reply to this newsletter.
What parents wish all IEP teams knew:
Different kids are different. There is a huge range of ability even within similar diagnoses — please don’t assume you know what this child can and cannot do.
Look around the table. Count the people. Chances are, the parent or guardian you are talking to needs to play all of those roles at the same time 24-7. They have had to become the expert on their kid and they have years more experience in their particular kid’s strengths and weaknesses than you will ever have reason to learn.
School is just one piece of a larger puzzle. Your parent is juggling all of you and your opinions about their child while at the same time balancing social services, complex medical services (including therapists, prescriptions and potential surgeries), and family and peer perspectives. Sometimes children’s medical needs are so time-consuming that it’s not possible for a parent to hold down a job. It’s really that much work.
The larger an IEP team gets, the more you may need to think about smaller, even 1:1 meetings with specialists before the big group meeting. It’s very hard to dig into all the minutia of a child’s day in a giant round table.
Ask to see videos of what the child can do at home. Especially if there are motor deficits, it can be hard to understand what children are doing outside of school without seeing it. Parents will probably be proud to show them off!
Read up on trauma-informed care. It’s reasonable to assume that our kids have been traumatized by their disability — either socially or through medical interventions. We parents have been traumatized, too.
Even if you have never met us, unfortunately it’s reasonable to assume we don’t trust you. We have been burned by medical folks or school folks who have come before you. Please take care to reassure us of basics that you might think are obvious — that you like our child, you want them in your class, you are interested in their success. Unfortunately, we’ve learned not everyone does.
Err on the side of overcommunicating, but also consider explaining why you are cc’ing people. If trust is there, we are happy to be part of the conversation. If it’s not, we wonder why communications have gotten so big, formal and inclusive of administrators — and whether we’re supposed to reply all when we respond.
If a child has high enough needs to require a classroom aide, that aide needs to be part of the conversation — maybe even present at the IEP meeting, if that’s allowed. At the very least, paraeducators need to understand the “why” of certain actions so that they can think more holistically about that child.
Be kind. Be patient. We might not have slept in three days... or three years. Give us the benefit of the doubt that we are doing our best.
Medical Motherhood’s news round up
Clippings of news and opinion from news outlets around the world.
• From the Concord Monitor: “Lawmakers weigh expanding window for special education”
New Hampshire lawmakers are considering expanding the eligibility window for New Hampshire’s special education law by one year, giving older students additional time to access services. But some school representatives are raising concerns about added cost.
House Bill 1513 would change the state’s special education statute to cover children ages 3 to 21 “inclusive,” rather than covering children older than 3 “but less than 21 years of age.” That means a 21-year-old would be counted under the statute as a “child with a disability” until they turned 22.
[…]HB 1513 would not solve a different hurdle for parents of children with disabilities: Presently, school districts are required to provide services only until the student’s 21st birthday, regardless of where that falls in the school year. The bill would not change that framework, but would simply extend the end date to the student’s 22nd birthday.
• From the Wall Street Journal: “These Self-Care Strategies Can Help Caregivers Cope With Burnout”
Remember to release pent-up emotions in a healthy way. On her staycation, Ms. Brown watched the 1998 movie “Stepmom,” which always makes her cry.
“You often want to cry for yourself, for all the pain and suffering you endure and witness,” she says. “If you can watch a movie, or listen to music that makes you cry, it can be a relief to release those emotions.”
Ask for help. “It’s OK to say you are at your wit’s end,” says Dr. Grubissich.
Danny Miller, the father of the two boys with MEPAN syndrome, is frustrated that so many people are choosing not to get vaccinated. He says those decisions are threatening his sons' lives, and he would like to see politicians and judges take stronger steps to ensure higher vaccine rates.
"You have parts of the country where two-thirds of the people are not vaccinated or boosted," says Miller. "That means things are going to drag on much longer than they should because we are not all in this together."
Recently, the parents received word that there are positive cases in both of the boys' classes. They're weighing the risks of keeping the boys in school.
Miller says time is critical for his sons. He doesn't know how long they have because very little is known about the boys' rare disease.
"COVID has taken 12 to 18 months away from us in terms of growth, development and treatments to help the boys on their journey," says Miller. "And with that delay, we're sort of trying to make up for lost time."
• From Bloomberg Law: “Students With Disabilities Get Mixed Results on Mask Mandates
Decisions on school mask mandates have been inconsistent. For example, Pennsylvania’s top court struck down a health department universal masking order in December, and a New York court invalidated the state’s school mask mandate Monday.
But a lower Pennsylvania court and a federal court in Tennessee have ordered school districts to enforce mask mandates to protect students with disabilities. And in Texas, both state and federal judges have at least temporarily blocked Gov. Greg Abbott’s (R) ban on mask mandates. The Texas case is on appeal to the U.S. Court of Appeals for the Fifth Circuit.
The Iowa and South Carolina parents made basically the same claims. Their children’s disabilities make them more likely to suffer severe injuries or die from Covid-19, so without some reasonable accommodation they can’t attend school in person.
The students were likely to win on their argument that the law violates their rights under the Rehabilitation Act and the Americans with Disabilities Act, the Eighth Circuit said in an opinion written by Judge Duane Benton and joined by Judge Jane Kelly.
Medical Motherhood is a weekly newsletter dedicated to the experience of raising disabled children.
Follow Medical Motherhood on Facebook, Twitter, TikTok, Spotify, or Instagram or, visit the Medical Motherhood merchandise store to get a T-shirt or mug proclaiming your status as a “medical mama” or “medical papa.”
Do you have a question about raising disabled kids that no one seems to be able to answer? Ask me and it may become a future issue.