Wednesday, October 3, 2012

One of those "have-to-do" things, Part 2

This is a continuation of the post One of those "have-to-do" things.  At the end of my talk, I took questions.

I am just going to list the questions I was asked and how I gave the answers.
Is Blake in here? No, Blake is with Mrs. Stueve.

Do Drew and Blake play games together at home?  Well, remember how I said that Fragile X makes communication hard for Blake?  Drew has Fragile X too, and that makes it hard for them to play games together.  We don't play a lot of board games at our house.  They do play together, though.

Will Blake have Fragile X Syndrome forever?  Good question.  There is no cure for Fragile X.  It is a part of who he is, so yes, he will most likely have it forever. 

Will he have to live with you forever?  We would like for him to grow up and live on his own.  Some people with special needs live with other people with special needs.  They have someone come in to help them with things that are hard for them like cooking or laundry.  (At this point a boy raised his hand and said his great-grandmother lives by herself but some people come over to help her cook and do laundry.)  I said, "See?  All kinds of people need help sometimes."

Will Blake get his driver's license?  Well, you know how when Blake gets too excited sometimes and he hits?  That would not be good to have while he is driving.  We wouldn't want him to hurt someone.  So we have to wait and see if he gets better control of his body first.  We have a long time until then, so we're not going to worry about that right now. 

How does Blake act in church?  He likes church.  Sometimes it is hard for him to sit still, but he likes the music.

What does Blake eat with?  He is supposed to eat with regular eating utensils, but he eats with his fingers sometimes, doesn't he?  (Girl smiled and nodded)  He does that because it is harder for him to control the silverware and make it do what he wants.  And he does it the easy way sometimes and just uses his fingers.

The teacher said, "I have a question.  Why does he do that hard breathing thing when we do the pledge of allegiance?"  I said, "The whole school is reciting it at the same time, right?  It is probably just really loud to him and it makes him nervous."

If Blake were here right now, what would he do?  He'd probably be hiding under a desk.

Are you like Mrs. Theis to Blake when he isn't at school?  "Great question!  Yes, I am like Mrs. Theis to Blake when he's not at school.  I help him to understand the world around him and what he is supposed to be doing.  If I had Blake with me at the store and we saw you and you said hi to Blake, he probably would just look away.  What do you think I'd say to him?"  She said, "You'd probably tell him to say hi to me."  I said, "You are exactly right!  I would!"

I wish I could remember all the questions they asked because they were really good questions.  I was so pleased to see that they were really listening to what I had told them.  When our time was almost up, I said,
"You guys are so important to Blake!  He really likes you and you can actually make a difference in his life!  His life is pretty hard sometimes and I think it would be easy him to feel bad about himself.  But if you try to be his friend, that will make him feel good about himself.  If you guys learn to like people just as they are, that would be really awesome.  We have quite a few kids with differences in this school and you could make their whole lives better just by accepting them for the people they are.  Thanks for letting me talk with you today and for being such good listeners.  And thank you teachers for giving me the chance to do this."

I forgot to write up a letter that day, so I went home and made up a letter for the parents saying I met with their third grader and gave a little info about Fragile X.  I also gave them our telephone number and email address in case they had any questions.  I included a link to the National Fragile X Foundation's website for them to learn more. 

I am so glad I did it.  I did dread it a little, but once I got started, I was perfectly comfortable.  The next day at lunch, I walked around the cafeteria talking to the third graders.  I asked them if my talk helped them understand Blake a little better.  Everyone agreed it did.  Last week, he was seated with a couple girls and when the boys walked past, he said, "Come here, sit with me!" and patted the spot next to him. No one sat with him.  And today, I saw his usual table fill up with kids, mostly boys.  Blake was late for some reason, and someone tried to sit in the last seat at the table.  I saw a kid block the way and say, "That's Blake's spot!"  lol.  It made me smile.