The first week of kindergarten is officially over, and I’m utterly exhausted. At my house, it’s so much more involved than new shoes, backpacks, and lunch boxes. It’s extra classroom supports, medication coordination with the nurse, and a love-hate relationship with the afterschool program.
Connor was nervous, but was excited to be wearing his new sneakers. There were no tears as we walked him to class on the first day. The tears came later that evening, but they were my tears. On day one, I picked him up at the YMCA after school program, in his school’s cafeteria. The staff was waiting for me with a write-up, and that look. I hate that look, I’ve seen it so many times before. The look of bad news, and of people that already can’t stand dealing with my kid. The look immediately fills me with both dread and anger.
Connor was standing on chairs, running down the hall, not listening, walking away from staff, yadda, yadda, yadda. We talked about his challenges, we talked about the first day being difficult and confusing. They asked me how to support him, I gave suggestions, they reminded me several times that they can’t provide one-on-one support. I grew angry. I told the director to put in writing that they can’t serve my child, he backed off and said they’re willing to work with him. It was a standoff.
The big problem is that there are not programs designed to accommodate children with disabilities. Period. Beyond that, I strongly advocate inclusion. I don’t want my son segregated, and with autism numbers growing exponentially, programs need to get on board and beef up staff to start providing services to all children.
We hammered out some short-term behavior supports, and his behaviorist will come meet with program staff next week to discuss ways to work with and support Connor. Until then, I feel like I race the clock to get there every day, and oftentimes I feel like a pariah. Why in the hell should I feel like this? My kid acts out because he doesn’t know how to tell you that he’s overwhelmed, confused, scared.
I’m trying to hold down a job I hate, to support my family, and can’t find after school support that wants to understand and work with my son. I can only wonder what single parents do. Texas has left me underwhelmed with their negligence in planning and providing services for the disabled population. If only we had known this before our move here.
And on Friday came the call from his teacher. A few instances of hitting, leaving the classroom without permission once, and difficulty sitting still and staying focused on activities. Yeah, yeah, I know.
I have to believe things will get better. This can’t be a snapshot of my son at 8, or 12, or 16. Of course at those ages, things could be worse. But I can’t even entertain those thoughts, I have to stay rooted in the present, which isn’t pleasant either.
I wish these people could see Connor like I do: laughing, smiling, saying funny things, hugging, kissing, tickling, sharing. He does not hit at home. He does not walk away from us. He follows us everywhere, and sweetly shares his crackers, and asks permission before he does things. And he says “Mommy don’t be sad, don’t cry.” And then his arms are around my neck, and he is wiping my tears and kissing my cheek.
And then I know that I will never stop fighting. He is worth every tear, and every pitying look, and every dreaded phone call. And someday they will see what I see.