This month is Down Syndrome Awareness month, and what I’d like to do during the course of the month is share some experiences and feelings I’ve had as the parent of a child with Trisomy 21.
Yesterday afternoon, I went to pick up my three year old and eight year old from the park (who both have T21), where they had spent an hour with a babysitter. When I got there, I saw ds8 sitting at the top of the slide, waiting for the girl in front of him to go down (I don’t know how long he was there before I came). After a couple of minutes while I was speaking with my younger son, Yirmi (8) said to me, “She isn’t going down.”
I responded, “Ask her to go down.” He did, and she refused, saying she wanted to go up the slide. He told me she won’t go down. I explained to her when you’re on the slide in the playground and someone is waiting behind you, you have to go down. If you want to go back up, slide down and then go back up around the other side.
She refused, making up different excuses – she wants to slide with her sister, she wants Yirmi to move away so she can climb up the slide. During these few minutes that we were speaking, I glanced at her mother standing close by, expecting her to step in. But she was busy on the phone and despite her proximity didn’t seem aware of our conversation.
After Yirmi had been waiting at least five minutes and the little girl wouldn’t move, I involved her mother. After her mother asked her to go down and she refused, her mother lifted her off.
The girl began screaming, then threw herself to the ground, continuing to shriek.
The mother was speaking to her daughter to calm her down, and as I was getting ready to leave, looked up at me. “Right, he’s a special child?” “He’s a child like any other child”, I replied, feeling impatient at the question. “Yes, but I’m trying to explain to her why he acted the way he did, and she needs to understand.”
“Acted like what?” I asked. “She said he was bothering her.” Heat began to rise in me. “I was watching him the entire time. He didn’t do anything to her – he sat there waiting patiently for a few minutes – all he did was ask her to move once.”
She continued talking to her child, who then said she was scared because he pushed her with his toes when she wasn’t going down.
Now, here in Israel, believe me, kids don’t wait patiently for five minutes for someone on a slide. They do a lot more than push someone gently with their feet – yelling, pushing and hitting is typical behavior. So this clearly wasn’t the issue (especially since I was standing there and talking to her the entire time, I didn’t see it and she didn’t mention it then).
I put the boys in the car. (Edited to add: I didn’t feel good about the conversation to date and wanted to speak to her from a more calm place inside myself, so I went back to leave things on a good note.) The other mother asked me how to explain the situation to her child. I told her that I believe that it’s best when we focus on what is the same between all of us than what is different, whatever the difference is. If someone isn’t acting the way that you like, I teach my kids to give the benefit of the doubt and assume they are a good person. She agreed, but after more conversation with her daughter, said that her daughter is very sensitive, that this behavior wasn’t typical for her, and finally clarified that the problem is that my son being different upset her. So how to explain that?
Deep sadness and frustration filled me at this well-intentioned mother’s question. Sadness that my child goes to a park and does everything right – and somehow the situation is about him, rather than the behavior of the girl.
Sadness that he can’t be seen as any other child. Frustration that the situation isn’t being dealt with the way it would if any other child had been sitting on top of that slide and she refused to move. Not liking something about someone isn’t actually an excuse for behaving badly, you know?
Frustration with myself for not being more patient and understanding and explaining better, while putting my two little kids in the car and then having them calling for me to come already while I’m speaking with her. When it’s been a long day and I’m tired and all I want to do is get home and give them dinner and put them to bed. When I just want my kids to be able to play and have fun at a park, without any conversations or explanations.
Frustrated and sad at the thought that kept circling around my mind afterward, “Why should I have to explain my child’s existence?”
Avivah
