My days have had incredible highs and deep, dark lows for the past month. It has taken a long time for the kids to start to accept Marisa and her uniqueness. She is a physical kid, hands on the other kids often, grabbing them or their stuff, and the school and I have been trying a variety of strategies to lessen or (God willing!) extinguish this behavior. I would not take away her Down syndrome if I could, but I would flip a switch gladly to get rid of the complicating behavioral challenges. Many things have gotten better over time, but some things she does seem to go on and on with no let up. The first few weeks when I walked her into the school building, I could sense, and see, that the kids were afraid of her. If I were a kid, I would be too. It's not fun to have someone, especially a kid you don't know well yet who does stuff you can't understand, come up to you and grab you for no reason.
I also had a chance to ask two of the "specialist" (music, art, computer, etc.) teachers how it has been going. Previously the PE teacher told me Marisa was doing well and that he had been working on teaching the other kids how to help her and be her friend. He is a great advocate and I'm happy to have him on our team. The music and computer teachers were not so supportive and their negative reaction to my question surprised me. I know my lovely little girl can be difficult to work with, that she gets distracted easily and can easily be a distraction for others; but I was dismayed at their unwillingness to see her value and that they preferred to just speak about the negative aspect of having her in their classes.
This past week the tide seemed to be turning. Marisa got a lovely little card in the mail from a girl in her class, and the kids started greeting her very nicely when she walked in. The teacher also told me that several of the kids were really stepping up to be her friend. Hallelujah! I put this in the past tense because when I picked her up yesterday she told me she was sent to the "time out chair." I finally got out of her that she had hurt another girl in her class. Well, a problem arises from this admission. It is difficult at times to tell from Marisa's words if she is talking about herself or describing what happened to someone else. Without checking with her teacher, I can't tell if she was the one who hurt the other student or if someone else did. This is an example of what I call an "added layer of complexity" in having a person with Down syndrome or any other type of developmental disability in your life. Changing behaviors from negative to positive is very difficult and time-consuming, and getting a clear and accurate report from the person in question can also be very difficult. So, I've decided to wait until Monday and see how the kids greet her once again.
The school has asked me to submit a letter to the parents in Marisa's class. This stems from several parents asking me if the school was going to give them information on Down syndrome so they could answer questions their kids might have. I appreciate that. Now I just have to come up with a very positive, person centered introduction to my child and her diagnosis. Hope I'm up to that challenge!
The bottom line is still this : it is difficult to facilitate successful inclusion for a kid like my wonderful daughter; but it is worth the time and effort, worth all the tears I have and will shed, and worth continuing to work at it every single day. She deserves to be an active, participating member of the greater community, and I will fight for that until my dying day.
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