If you are a parent of a child with autism or a disability, you know the tug-of-war between the school and the parent is real and can be stressful. The IEP meeting every year is something many of us dread. You might attend seminars, ask for ideas in autism groups online, read various tips and tricks, try talking to a family advocate and gear yourself for the meeting. I’m guessing the school ,on its part, does a ton of meetings and collaboration to come up with an IEP they believe is practical and effective. Same goes for almost everything that involves your child and the school. There seems to be a constant back and forth trying to figure out what is best for the child. While every school year is an opportunity for the students to grow, it is also an opportunity for the teachers to learn more about the kids who need that extra attention because of their challenges.
If I was asked what I would want the school to know about my child and autism in general, this is what I would say:
1. My son is more than just an IEP. What can be a set of guidelines for a student in your eyes is what we see as the stepping stones to a better future for my son.
2. I wish you knew how awful it feels sitting in a room listening to teachers and therapists talk about all my son is incapable of doing. I wish you could feel my pain. It would be encouraging if you also listed his strengths and achievements.
3. It may not appear so but I really do appreciate all you do for my son every day.When I see progress in him , you are the first one (after his dad) I think about who would be proud to hear about it.
4. When I fight for every single of his therapy minutes, I don’t just do it because I can. I fight for it because I think you can. I want more of your time with him.
5. You might think my son’s more than normal tardiness and absence has something to do with my inefficiency, but my son has a sleep disorder and although I might not be able to get a medical diagnosis for it, it is an actual problem. So, when my son is late to school or misses it, chances are he had a sleepless night and he is catching up on it in the morning before he comes to school. I’m actually doing you a favor by not sending a sleep deprived , cranky child to school. Please don’t penalize him for that.
6. When I ask you too many questions about my son’s routine, it’s not because I’m trying to interrogate you. It’s because I’m trying to find out how his day was. My son is nonverbal so it helps to get additional information from someone who has been around him during his day at school.
7. A chewy tube is not the solution to all his problems.
8. Not all aggression is bad behavior. For a nonverbal child aggression might be a way to express their angst, or tell you they are sick, they want to be heard or just an expression of their helplessness to articulate themselves. There can be a million reasons why a child on the autism spectrum is “acting out.”
9. When you sit around a table discussing my son and say he might never be able to even write his name, you might think you are doing me a service by showing me the harsh truth, but honestly, you just lost my confidence in you and your commitment to my son’s development. If you don’t believe in my son, who will?
10. Many autistic kids line up toys, stim, have some kind of sensory issues or have social awkwardness. In spite of all these similarities, each autistic kid is different. You may think what works for one will work for all, but it might not. That’s the challenge of working with an autistic child.
11. I really admire your patience working with a child who will take a longer time to show you results of your hard work, if they do at all. I appreciate the fact you do not relent. You smile and deal with his meltdowns and work through all of this to ensure he has a productive day at school.
12. Please don’t have a a classroom for kids with disabilities and the associated resources because it looks good on your school’s resume. Have it because you want to really help our kids out. Have it because you want to invest in them, in their future. Have it because you are as proud of our kids as you are of the rest of your students. Think about them, because when we send our kids to you, we trust you with them. We trust you with their emotional, physical and intellectual well-being. They might not be able to stand up for themselves so please stand up for them — in the classroom, in the corridors, in the bathroom, in the cafeteria. Let the rest of the school know our kids are in no way a subject of ridicule and they deserve the same respect as the rest of the kids in the school. Please.
13. Last, but certainly not the least, is the pressing need to educate other students about the importance of diversity, acceptance and inclusion. I would love to see the school coming up with programs to teach the rest of the students the value of inclusion. Special needs classrooms, adapted physical education and field days exclusively for the kids with disabilities are wonderful ideas but they also tend to create a distinction between our kids and the rest, creating a feeling of “they are different” and “not part of us” in the impressionable minds of students. So it is of utmost important to ensure students are taught to be enablers and a friend.
Every time a parent of a child with a disability decides to homeschool their child, it is a loss for the schools. It’s also a challenge for the education system to rise up to the challenge. Together, the parents and the school can change the experience and shape the future of every child with a disability who is waiting to be the extraordinary person they are meant to be.
Tulika is mom to 7-year-old Vedant who was diagnosed with autism when he was a little under 3. She is a member of the Family Advisory Council at Cincinnati Children’s Hospital’s Department of Developmental Disabilities and also runs her blog at www.braindroplets.com.