Stories

A Back-to-School Love Letter to Parents of Kids With Special Needs and Disabilities

Written by ShaRhonda Knott-Dawson | Sep 10, 2018 4:00:00 AM
Dear Fellow Parent Warriors, While every parent has strong feelings as a new school year approaches—excitement, nerves, even a little worry—our special tribe of parents with children who have IEPs (Individualized Education Plan) or 504 plans feel all those feelings plus some. Our worries are much more complex than just wondering whether our kids will fit in ( we worry about that, too), we also have to worry about whether our children’s teachers will even know what their special needs are! Sometimes, school leaders don’t give classroom teachers all the information they really need to understand where our kids are in their learning and how to help them the most. We know that it’s the first week of school and everyone's a little bit crazy. But as one warrior parent to other warrior parents, I want to validate how so many of us feel.
  • It’s OK that we are terrified this first couple of weeks.
  • It’s OK that our stomach is in knots over whether or not our child will have someone who will play with them and understand them.
  • It’s OK that we are worried and want to call the teacher every single day to make sure that they know specific details about our children.
  • It’s OK to be frustrated because our children can’t accurately tell us what happened during the school day because of their disability.
  • It’s OK that we don’t automatically trust the schools, because they have proven in the past to be untrustworthy.
  • It’s OK for us to contemplate homeschooling, then realize we aren’t ready for that and send them back to school.
It’s hard to wait for the beginning of the year to sort itself out. Sometimes we have to let go of control. But, at the same time, our children do have special needs from day one. When their teachers haven’t been prepared in advance to meet their needs, that can start the whole school year off badly, or even disastrously.

Teachers Can’t Help When They Don’t Know Our Children’s Special Needs

When my daughter was only 3 years old, we had that kind of disastrous experience. I got a call the second week of school, telling me she had to be picked up and taken home for misbehavior. Within two minutes of speaking with school staff I knew that neither support staff, nor teachers, nor administrators knew about my daughter’s disabilities or what she needed from them to be successful. That experience has left me fearful at the beginning of every school year. I am keenly aware my child might look like she’s misbehaving, when really, she is showing symptoms of her disability. A teacher who doesn’t know her needs might label her a “problem child” or punish her for behaviors she can’t control. I start every school year wondering whether her new teachers and staff will walk in knowing what her limitations really are. https://educationpost.org/parents-shouldnt-need-a-lawyer-to-get-special-education-support-for-their-child/ For example, I love that my child is excited to go back to school, and I know that excitement can overstimulate her into trouble with paying attention, following directions and staying in her seat. Other children show the same behaviors, but the consequences and behavior strategies that work for them don’t always work for my child. The teacher’s response to her behavior needs to be different. If the teacher doesn’t know that, I fear she could be punished for her excitement, not supported.

Sometimes Advance Preparation Falls Through

This year, I did all I could to prepare in advance, and the unexpected happened anyway. Back in June, my husband and I had a long meeting with the teacher assigned to my child’s class for the upcoming school year. We spoke in great detail about her strengths and challenges, and how to support her to succeed. Then the teacher was in an accident over the summer. She’s going to be OK, fortunately, but she will have to miss the entire first month of school. So my daughter now has a long-term substitute, who is perfectly competent and kind, but has not been briefed on my daughter’s special needs. For the first few days of school, I’m trying to be a “normal” parent, not “warrior for my disabled child’s rights parent.” I know it’s a big ask to ask teachers to be on top of everything right away, given all the newness they are hit with during the first couple weeks of school. But when teachers don’t understand our children as individuals from day one, and know their symptoms and strategies to support them, it can lead to lasting problems for the entire school year. So all those crappy, worried, freaked-out feelings we have are OK. [pullquote]It is OK to be pissed that we have little control over the first few weeks of school.[/pullquote] Our worries are real and valid. (Many states and districts struggle with this stuff, including Chicago, New York and Texas, to name just a few.) None of us is alone. Warrior parents, we are all in this together, having similar issues and struggles to support our special children and their special needs. Hugs and love to you all. Sending you encouragement to take time for a little self-care. Love from your fellow Parent Warrior, ShaRhonda https://educationpost.org/what-kids-want-teachers-to-know-before-the-first-day-of-school/