A few years ago an older woman spotted me with my toddler at our farmers market. She had a grown son who had Down syndrome, just like my little one. Randomly striking up a conversation is what we do when we see another member of our tribe, after all. Even though we had never met – we talked as if we had been friends forever.

I remember so vividly her warning me about the school system. “I still have bruises from those years,” she said. I could tell by her body language, those twelve odd years had worn her down. “That was a long time ago,” I thought. “Things must be different now. People like her paved the way so my son will be included and accepted. “

Last week I got my first proverbial black eye with a punch in the gut for good measure. My son is a young 6-year-old who recently started 1st grade. I had requested an informal meeting to get to know his teachers (he is in a dual language school, so he has a Spanish and English teacher) and I ended up sitting with 5 people including an assistant principal who was taking notes on his computer.

So much for a friendly getting to know you.

We sit down and exchange those pre-meeting pleasantries. But after just one compliment about my son, the gloves came off – and the rest of the meeting was purely negatives.

  • Difficulty attending
  • Difficulty with transitions
  • Doesn’t pay attention
  • Easily distracted
  • Disappointment
  • Distracted
  • Has to use the bathroom a lot
  • Did I mention he’s distracted?
  • Difficulty with materials
  • Regression in handwriting
  • Highly distracted by stimulus
  • Distracting to his classmates when he comes back from PT/Speech/Bathroom/etc.
  • Concerned about his academics

My takeaway from the meeting – these teachers do not know how to teach my son. Their main suggestion for helping him: pull him out of class more. I said absolutely not, that is not the real world. That is not inclusion. I stressed that one of the most important things for him to learn right now is how to interact appropriately with his peers while attending in the classroom. If you pull him out, how will he ever learn to stop doing all of the things you don’t want him to do?

One of his general education teachers responds (this is paraphrasing), “So my job is to socialize him while someone else teaches him in my classroom? He can’t do any of the material I have. How am I supposed to do academics with him?” Dumbfounded by this question I ask if either of his general education teachers have experience co-teaching. 16 years one of them told me. When I asked if either of them had ever taught a student with Down syndrome the answer was, “No.”

This situation was surreal to me. I am an advocate who talks to others about how to handle situations just like this. I give them pep talks before, console them after, and discuss next steps.

When I tried to explain that, I started crying. Right there. Tough as nails when I’m fighting for other kids, I fell apart. As tears streamed down my face I told them it sounds like they’ve already given up on my son. I talked about how I coach parents on how to handle meetings just like this; yet every time I come in for my child I’m terrified they will suggest segregating him to the room down the hall. I stressed I will never let that happen because times have changed. That’s no longer acceptable. In fact, all of the children they push into that room at the end of the hall belong in classrooms with their peers. And it’s our jobs to learn how to accommodate them appropriately.

As I regained composure, the vice principal assured me that my son would stay in the general education classroom. He encouraged me to bring in the materials I’m using to teach my son at home so they can incorporate them into the school day. The special education teacher was very enthusiastic about trying all sorts of things.

But my son’s general education teachers and his aide – no words of encouragement from them. Just blank, cold, stern stares. Their attitudes and nonverbal cues gave me the impression they don’t believe my son belongs in their classroom.

That’s the thing about inclusion, for many schools it’s just a word; it’s just compliance with federal laws and appeasing parents who understand and know how to fight for their child’s rights. But if the teachers don’t believe in it and don’t know how to do it, is it really inclusion?

So what do we do now? For now, in my family, I will take time away from my other two children to help my son’s teachers teach him. I will lose sleep and we will spend less time at the playground so I can make sure my son is getting what he needs from his school.

And as one of my son’s previous teachers reminded me, I will keep in mind that this is a marathon. We won’t have the perfect team every year. So we must all pace ourselves. We have to keep plodding ahead, helping and encouraging each other along the way. And maybe, 12 years from now I’ll be able to tell a new mom at my farmers market that the schools aren’t so bad.

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