I recently called an IEP meeting to discuss my daughter’s preschool situation — that 2.5 hours per day is simply not enough time to adequately develop her social and emotional development. It was during my preparation for this meeting that I realized that the biggest obstacle for parents of children with disabilities is other parents!
As I sat there making my argument for my brilliant and beautiful little ball of dynamite, I discussed things like her daycare expulsions, isolation from her peers outside of school, and even rattled off the many activities we weren’t welcomed back at. The Child Study Team looked at me like some maniac, not understanding how a 4-year-old could be excluded from everywhere already and I had to actually break this down for them: Exclusion is a form of bullying. And yes, it starts outside of the classroom.
It started at a toddler gymnastics class we attended once, long before her diagnoses, my daughter was overwhelmed on the first day with excitement and anxiety about the lights, the smells, the open space. Within fifteen minutes of her being distracted and wandering around the room, the other parents whispered and complained to the manager. One mom made sure to tell me to my face that my daughter had ruined the class for her daughter and how she needed a make-up class because of it. I laughed awkwardly because I couldn’t believe she was being serious about toddler gymnastics being this important. This was supposed to be fun. But it wasn’t.
I continued to explain that businesses don’t generally throw children out until other parents (or “customers”) complain. At dance she did her own moves and didn’t listen until a few classes in when they refunded our money and said it wasn’t working out. She was two and a half. Another dance school didn’t actually throw her out but I pulled her from the class myself because she lost interest after four consecutive weeks of refusing to participate. At 4-years-old I wasn’t going to force her to dance for me, this was supposed to be fun for her but again, it wasn’t.
Even back during her Gymboree days, other parents lost their minds when my child climbed up the slide or played on the equipment during circle time. And she was a baby-baby back then. But still, she had tantrums on playdates, still can’t ride a bike with training wheels, can’t steer her Power Wheels car, and gets anxious in new environments. Anxiety in children with autism can present as aggression or defiance and it’s exhausting to constantly have to narrate my daughter’s struggles to people who don’t understand.
Explaining my disappointment in itself was disappointing because some people don’t want to understand. The lack of empathy when you tell other parents that your child has autism or [insert other disability here] when your child does unusual things or acts weird in sports is an obstacle when you are trying to teach your child empathy. Many always think it’s okay to say how sorry for you they feel and then mention how there should be a special class for “them.” Saying that my child needs to be in a different class with special kids shows how they want them to be segregated. Excluded. Conscious or not, this is the problem.
The CST continued to look puzzled as I continued to explain to my child’s preschool teacher that — of course, the precious little four-year-olds in the class are not excluding my daughter because they are too young to understand that. I’m not sure they are even capable of that at 4. It’s their parents that do it. It’s the parents of some of the typical peers who complain about their children picking up weird behaviors and annoying habits in the integrated preschool programs. The parents who complain about my crying child on the special needs bus on the way to her integrated preschool program that is designed for CHILDREN WITH DISABILITIES!!!! This is the last place my child has left, this classroom!
It’s also the other parents who complain about what they perceive as the “bad kids” at daycare and demand to separate them, remove them, and keep them away. I had a parent actually show up to my daughter’s 4th birthday party just to yell at me in person because our former daycare apparently did not take action when my child bullied her daughter. Meanwhile, I come to find out that her child kept stalking and kissing my daughter when she didn’t want to be touched. She used her words to tell that little girl over and over again not to touch her but she didn’t stop. But no one ever wants to see that side of their own child. That sometimes their child is a problem too. But special needs parents? We have to see it, work on it, and deal with it every single day. And we find ourselves apologizing — even when our children aren’t in the wrong.
I always tell my daughter, since she is only 4, that when another child hurts her, touches her, or does something to her that she does not like that she needs to use her words. Tell them to stop. Tell them it hurts. Tell them you don’t like it when they do that. I’m trying to teach her to handle her own battles with her words or by walking away because I hate that she is always blamed.
I’m the last person to think my child is perfect because she is far from it but I am working my butt off trying to teach her and help her grow and to handle social issues independently. Those of us raising challenging children are so overly conscious and aware of this because we are working on these skills every single day playing board games and doing puzzles, and hours upon hours of therapies. It is exhausting and the last thing we need is other parents making our lives any more difficult.
This push for inclusion and integration is based on strong research that found how children with disabilities have the best chance to develop when exposed to their typical peer role models. But what worries me are the typical peers learning to and may eventually exclude others based on what they learn from their leaders — their parents who already set the precedent during their younger years. Preschoolers aren’t capable of exclusion just yet but they are going to learn it. So yes, CST, thank other parents for this meeting. This is why we’re here and we need to fix it.