A blog about the unexpected pleasures of raising two not so typical, but truly wonderful girls, one of whom was born with a little something extra; and learning each day what is truly important in this blessed life.

Saturday, October 16, 2010

Field Trip

I went with Miss Roo on her first field trip at her new school yesterday.  And, since it's October, of course, it was to a pumpkin patch.  I had offered to be a chaperone and her teacher accepted even though they usually do not take parents on this annual field trip with the 1st and 2nd graders.  I'm so glad I went, though.  The day was gorgeous and I got the opportunity to see Marisa interact with the kids in her class and with other kids from her school.  It is not perfect, believe me, and my heart mourns at times for her inability to relate to the kids the same way as they naturally do with others; but I still saw some very lovely things happen during the trip.  There is a girl in her class she seems to be a bit obsessed with, and I think it's because this girl's locker is beside Marisa's and because at the beginning of the year the girl was helping Marisa quite a bit with her work during the day.  I could tell during the field trip that this little girl doesn't feel the same way about Marisa as Marisa does about her and I may need to intervene at some point or at least talk to her teacher about it.  The other girl wasn't mean to Marisa, but she obviously didn't want to hang out with her either.  That being said, there were plenty of other kids in her class who did want to hang out with her, and I was thrilled to see that.  

A funny and touching thing happened after Marisa ran into the hay pyramid at the pumpkin patch.   We've gone as a family to this farm to get a pumpkin the past couple of years and every time Marisa made a beeline into the hay pyramid.  She loves that dark, cramped, to me completely oppressive, space for some reason.  So, I had a hunch she would do that during the field trip.  I was right.  She ran in, as did most of the other kids, and after a while I asked one of the boys to go get her.   Soon, a contingent of 1st and 2nd graders were on a mission to find Marisa and bring her out safely.   At no time did I feel they were poking fun at her or put out by trying to find her.  They joined together to help her out.  One of her classmates brought her out with him and then he said very sweetly, "We found you Marisa," and gave her a hug.   Later she climbed to the top of the structure and a girl from her class ran up so she could help Marisa come back down.  Marisa has very good gross motor skills and would have had no trouble coming down from the top but it was still very sweet of this other girl to want to help her out.   The classroom aide told me she was glad I came because she wanted me to see that there are some really great kids in the class who are supportive of my child and for me to witness some of the good things that happen with their interactions.  She said she knew that I mostly had to hear bad news, and she wanted me to be sure to know there was lots of good news too.  Thank God for that!  

I also got to spend time with Marisa's new one on one aide and she seems really great.  I was so happy after this experience that I even went out and bought Marisa a beautiful dress (but thankfully not expensive!) for the school's Christmas music program a couple of months from now.   I'm finally at the point of accepting that we just might be able to make a go of being back in the classroom.   I can't even express how wonderful it will be if she can learn to be a part of a broader community and get along with lots of different people, while making gains academically.   That will be an overwhelming answer to prayer.   So, that thought, coupled with a beautiful fall day in a favorite pumpkin patch, makes life worth living!

Friday, October 8, 2010

Roller coaster ride of inclusive placement

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.