Saturday, November 13, 2010


Baby has two more teeth breaking through. Her bottom one is through but, still has a long way to go before looking like a tooth. Her top front teeth are peaking through... one more than the other. She is going to look so different with teeth.

She has really been breaking ground on crawling. I finally got a video of it, I figured out that she will crawl TO the camera if I have it on the ground where she gets excited to attack it.
(And in this clip you will hear her making the "na na" sounds that she just started recently...)

And last, my heart breaking...
This part of my post is a little different than what I have posted before. Usually when something sad happens to one of my kids I don't bring it up here, but, it was an eye opener for me, so I will share so that you all may learn from it.

Brother is in a self-contained classroom—a cluster unit, formerly called UEI.

Anyway, in his IEP (Individual Education Plan) we have it stated that he will have inclusion as often as possible. He gets to go to 1 mainstream class everyday, and a second class 3 times a week. I am always very excited for him and very scared for him. I am excited for him to emulate mainstream behavior in a classroom, and I am scared for him to be the odd one out in the classroom.

Well, this particular day, Brother had a substitutes for his teacher's two assistants, and a substitute for his inclusion classroom teacher. This, alone, was formula for disaster... out of the routine is never a good thing for FXS kids... and the fact that there were 3 substitutes that day, I think, is what may have set off the "incident."

"What was the incident ?" you ask.

I am giving the version that was put together by talking to Brother and his teacher and figuring all of it out. First of all, I was VERY proud of Brother for being able to express to me, at all, what had happened.

Here were Brother's words for me after he came stomping off the bus, throwing down his backpack and storming into the house, saying "I am never going to school again!"

Me: Brother? What is wrong? What happened that made you so mad?
Brother: It was scary! The movie was scary! I was crying and [the substitute] got really mad at me.
Me: What? What movie?
Brother: A movie about the British.
(Now, at this point I was kind of giggling inside because I thought, what was so scary about the British?)

Anyway, I talked to his teacher and then found out that Brother started to fall apart and cry when the movie started and began to roll around on the floor and hide under his desk. (He is very sensitive to the mood music gives and I am guessing, to him, the music was scary.)

My first reaction (inside my mind) was, "Oh no! Mainstream kids saw him acting crazy and now they will be scared of him!"

After talking with his teacher I asked him to tell me more about what had happened. He told me that the substitute took him into the hall, got in his face and said, "Stop this foolishness right now!" When Brother told me this, I wanted to cry.

He was already nervous because of a snag in his routine with the substitutes, the movie they were watching in History was scaring him and he didn't know what to do. He knows he is supposed to stay in the classroom and so, in his mind, he had no where to escape his fear. Then, on top of him being scared the substitute takes him into the hall (he thinks he is going to be leaving the scary situation) and then she gets in his face (never a good thing to do with any child let alone one with Fragile X Syndrome or Autism) and tells him to stop his "foolishness."

All my nightmares had come true within moments, in one day.

Brother acted out in front of his mainstream peers.

Brother had been bullied by an adult.

I did what any mom would do. I called the school and told them that the particular substitute of that incident was to never work in Brother's classroom again, or his school, for that matter. (They obliged my request by sending my letter of the experience straight to the district.)

Then, I asked his teacher if I should take time to go into the inclusion class and try to explain FXS to all the kids so that they would understand why he had fallen apart that day.

Here's the happy part:
Brother's wonderful teacher went and talked to some of kids that were in the classroom that day and none of them had anything bad to say about the incident. They were just concerned for Brother.

I was touched.

My children are breaking barriers one day at a time.

7 remarks:

Bonnie@TheFragileXFiles said...

I'm thrilled the kids were just worried for him, that's wonderful empathy on their parts. And it's unfortunate they'll let any fool be a substitute teacher. How is brother doing now, is he over it and willing to go back to school? Poor kid. Thank you for sharing this story, it's valuable information to those of us whose FX kids are just starting out in school.

ReimFam said...

I want to let you know how I feel from a teacher's standpoint. I am not a mother of FXS kids and do not understand many of the things you do and go through, and on the flip side I want to tell you about some of the things teachers have to go through that may be overlooked as well. Keeping a classroom of 25 kids together is not easy. There needs to be lots of structure, clear understanding of limitations and expectations (by kids and teachers), and lots of love. I know you are upset about the substitute's actions with Brother, but try and see it from her point of view. She probably knows nothing of FXS, and that isn't her fault. She was placed in the classroom most likely by Brother's original teacher. She may not have been informed of his habits, characteristics, or situation. In my opinion, the classroom teacher should have made a call to the SPED teacher, requesting Brother not come on that particular day due to her absence and lack of schedule continuity. If not her,then the Sped teacher should have made that call. There should have been an intervention prior to him going into the mainstream classroom. Many people could have made that intervention knowing of this teachers absence. The substitute may just have been trying to keep order in the classroom (very, VERY difficult sometimes, ESPECIALLY for substitutes). She probably could have been a bit nicer given the circumstances, but maybe wasn't informed enough to properly handle the situation. I don't know all the details about what happened and what would have been best, but I just wanted to let you know what things I think should have been done prior to the incident, as a teacher. If Brother was in my class, I would have requested he not be mainstreamed that day (knowing he needs a schedule to depend on). Had I not done that, I would have requested an aide in the classroom while he was there (just in case). Sometimes the substitutes get a lot piled on them they they weren't aware of when they agreed to the sub the class. Just try to understand where she may have been coming from.... I hope you do not take this the wrong way. I totally agree with you trying to make sure this situation doesn't happen again. But maybe it can happen by talking with the regular classroom teacher, and asking her to keep you more informed about what is going on, and any changes.

ReimFam said...

P.S. When I have had special needs kids in my classroom, my 'everyday' kids flock to and befriend the child who is being mainstreamed. They are always the favorite to play with, talk to, and be friends with. I don't think you have much to worry about there. Really. You would be surprised about how nice *most* kids really are. :)

Rachael said...

Charise (spelling?) You have some great points there, no offense taken at all. I think it is important to hear both sides--teacher and parent. Brother's teacher and I talked about this incident in depth and both of us learned good lessons. We are both learning together. I offered to teach the substitute in this instant but, they had had many problems with this particular sub in this class--it just was not a good fit for her. So, I guess my letter validated what Brother's teacher and Principal were already concerned about. And, just as a side note, you must be one of those teachers that all of us parents want our kids to have---a caring and concerned teacher who LOVES what she does. Thank you for what you do for children when you are teaching. Love, Rachael

Rachael said...

To Bonnie, yes, Brother is still going to school. He still talks about it because it was one of those "interesting" things in his life that he likes to share with people. It didn't stop him from going to school, I had to keep that routine or he would take advantage of it. He loves his teachers and understood that that day was different from others. We, his teachers and I, learned a lot from that experience and now have ideas for what to do next time there are subs/movies. We will let him know that he can leave the classroom and go back to his regular classroom if a movie disturbs him, and all teachers/subs will be aware of that. If there is a sub in the inclusion classroom, he will have the option to not go to that particular class that day.

Paola said...

I am glad you took action, I would have reacted the same way you did! if we don't protect our kids than who will? proud of you Rachael and proud of brother for telling you what happened!

Julie said...

What a scary experience for Brother! I am so glad he was able to express to you what happened. All parents should be very involved with their children in the classroom! I am glad it turned out well in the end!