Wednesday, October 3, 2012

One of those "have-to-do" things

This is going to be long and will probably need to be divided into two parts.  I went to Blake's classroom on Monday.  I spoke with his class when they were in Kindergarten and in first grade.  I told them that Blake's brain worked differently, but he was mostly the same as everyone else.  But as he gets older, the differences are more obvious to the kids.  I decided it was time for them to learn more about Fragile X Syndrome.  I borrowed heavily from Mom-NOS, who has a wonderful blog post about explaining autism to her son's class.  Anyway,  I got there at 2:20, about forty minutes before the end of the day.  The whole third grade was in Blake's classroom, with the desks pushed to the walls and the kids lined up in neat rows in their chairs.  I would estimate that there were near sixty of them. 

Mrs. L, Blake's teacher, said, "This is Mrs. Meyer.  She is Blake's mom.  She is here today to share with us a little about what Blake goes through.  Please listen closely."

I said, "Hi guys.  I am here to talk with you about Blake.  I know I have visited you in the past, but today I want to explain things a little more to help you understand Blake a little better.  Blake has Fragile X Syndrome.  It is something that runs in families.  You know how you get your eye color from your mom or your dad?"  All the heads in the room nodded.  I continued, "You are either born with it or not.  You can’t get it later in life and you can’t catch it,"

"Fragile X affected the way Blake learned to communicate. 
When most babies start talking they start out saying one word at a time, like “Juice?” when they want a drink.  When they get older, they add words to it, like, “Juice, Mama?”  and eventually, “Can I have some juice?”  Well, Blake’s brain doesn’t naturally learn that way.  He would bring an empty cup to me.  I would say, “Oh, you want juice?” and he learned that I would get him juice.  So he started saying, “You want juice?” to me to let me know he wanted a drink. It’s like echoing back what he’s heard.  He collects these sayings and uses them when he wants to communicate with people. 

Do you have a favorite song?  Or get a song stuck in your head? What do you do?" They yelled out, "Sing it!"  I said, "That's right.  And that’s how words are for Blake, not just songs. That is kind of what Blake is doing when he repeats the same phrases over and over."  A boy in the back said, "Is that why Blake says, 'Eww, that is stinky!' all the time?"  I said, "Good question!  What do you guys do when Blake says that?"  Someone said, "We laugh!"  I said, "Yep.  You laugh and smile at him.  He feels good about the interaction because he knows you like it.  He doesn't know of a  lot of ways to start a conversation with you, so that is his way of talking with you.  Sometimes it is easier to talk to Blake about things when he likes the topic. When he already understands the topic, it is easier for him to find the right words to use.  Kids nodded their heads like they got it. 

"Fragile X causes learning to be more difficult for Blake.  He needs to do things at a slower pace to learn it and he needs to practice something more times before he understands it. Fragile X also affects his senses.  I know this one is an easy one for you, but can someone tell me what your senses are?"  Lots of hands raised.  I pick someone and he named them.  I repeated them and said, "Fragile X makes Blake's senses work better than people who don’t have Fragile X.  It is like super-senses!  Normal brains are made to know what is important  to sense and what isn’t.  But Blake's brain has trouble blocking out what isn't important.

Imagine you are at your desk working on a worksheet.  Your teacher is talking at her desk with another teacher who stopped by.  You might be a little distracted by it, but you can probably still do your work, right?  I want everyone to be quiet and listen for a second.  Do you hear the clock ticking?  The hum of the lights?"  A girl raised her hand and pointed out the noises coming from the open window. "Those noises are just as loud to Blake as  someone yelling in his ear.  Then, imagine trying to concentrate on doing Math.  It would be pretty hard, wouldn’t it?"  Heads nodded.

"He doesn’t like noises that happen all of a sudden, because his brain reacts differently than ours does to it.  What would you do if you were in a haunted house and someone jumped out and scared you?  You’d scream, your heart would beat fast, you might breathe fast or start sweating.  You don’t stop and think, Oh!  He surprised me, I think I’ll scream now! You just react.  That is what Blake does when someone makes an unexpected noise, gets in his space or touches him when he isn’t expecting it.  He might even push them away or hit them.  He doesn’t think about it, he just acts. I am not saying it is okay to hit or push someone, it isn’t.  But it can help you understand why he does that sometimes.  We are trying to teach him a better way of reacting to these situations, but it is mostly automatic.    His body is always on alert because there is so much going on around him." 

"What do you do when you are nervous?  Do you take a deep breath to calm down?  When you are at a scary movie, what do you do?"  Hands shot up.  I called on one boy who said, "I close my eyes!"  And another girl raised her hand.  I called on her and she said, "I cover my face," and she demonstrated. I nodded and said, "Blake does this too, in everyday life.  He breathes very fast, trying to calm himself.  But it isn’t very calming for him.  And sometimes he hides under his desk or he sits on the floor with his knees up and his head between his knees.  This blocks out what he sees as scary or threatening.  Remember all his super-senses?

You know how I said Blake has trouble communicating because of Fragile X?  That makes school tough for him because you have to do a lot of communicating at school like answering questions, talking to friends and following directions. 

Try to imagine what you would feel like if you went to school one day and everyone was speaking Japanese.  Your teacher taught everything in Japanese. You could see she was teaching math," I pointed to a board with math problems on it, "because you could see the math problems, but you couldn't understand how to do the math problems.  The kids were really nice to you and you could tell they wanted you to join them in playing games on the playground, but they explained the rules in Japanese.  You could kind of tell what was going on, but not exactly. How would you feel?"  One girl said, "Weirded out!"  A boy behind her said, "That's not even a word!"  She gave him a dirty look.  A boy said, "I'd be nervous."  I said, "Yes.  You'd probably feel weirded out and nervous.  But what if someone came into the school who spoke both English and Japanese?  How would that make you feel?"  The replies were unanimous that you would feel better and relieved.  I said, "That person could help you understand what the kids speaking Japanese were saying and she could explain to everyone else what you were saying, too!  That is what Mrs. Theis (his aide) is to Blake.  She understands him and she can help you understand him, too."  I could see kids brains working at this point.  Their heads were nodding and their faces were smiling.

I then decided to take questions.  And that is going to have to be on the next post. 



Christina said...

Amazing!!!! I am getting ready to speak to my son's 5th grade class, I am going to use some of your examples if you don't mind! So inspiring!

Harry's mom said...

This is excellent! Fantastic job Mom!!

Anonymous said...

Hello! I am student at the University at Buffalo and I am an occupational therapy major. I just wanted to commend you on how amazing your blog is and on what a wonderful parent you are to your sons. For one of my classes we had to choose a condition to study and I chose Fragile X because I wanted to learn more about it. Through my research, I came across your blog. Reading about what someone encounters on a daily basis with Fragile X is so much more meaningful than reading textbooks and articles from the Journal of Occupational Therapy. You are such a loving mother, and I am truly inspired by the way you handle the various 'curve-balls' thrown at you. Reading your blog also motivates me to keep studying in order to reach my goal of becoming an OT. I want to go into pediatrics, and one day I hope to help and improve the lives of others with Fragile X and other conditions. I also think its admirable that you went and spoke to your son's class. As they get older, children tend to turn a cold shoulder to what is different and what they do not understand. Being educated about Fragile X will make them more empathetic and compassionate towards your boys and also others with special needs. A girl I went to high school with had cerebral palsy. She was often made fun of by my classmates. I wish that her mother had come and spoken with the class the way you did for you son. Not only to advocate for her daughter and CP, but to show our classmates how ignorant and disrespectful they are. With that being said, thank you again and keep writing!