I got an email from the principal yesterday. She informed me that Bradley spent the afternoon in In school suspension. Another student took a detention slip off of the teachers desk and wrote Bradley's name on it. Then he gave it to Bradley. He got really angry, and threw his book on the floor. The student then told him it was a fake detention and Bradley said, "that is not ("F" word) funny." He seldom gets in trouble at school and I have never heard a cuss word from his mouth. But he has gotten mad and yelled when angry at home and he can get very moody. I really think a half day of In School Suspension was harsh, but maybe not. I don't think the other boy got in trouble, but after emailing the principal once, I have decided to drop it. I just think the other boy should be in trouble as well.

In the email I told her it could be his steroid and then she emailed back that explained it. She said it was not at all like Bradley. The thing is he has been on steroids since he was 5 1/2 years old...deflazacort since 11 years old. He is 16 now; a Junior in high school. Does it seem unfair to blame the steroid. I guess it could be a combination of that and just being a teenager.

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HI Lisa....I have been researching this lately myself....My son is almost 14 and has just entered puberty{ by endrocronologist's exam} He has been extra emotional....more meltdowns than a 2 yr old. Someone told me that all of his overreactions are hormones on steroids. Hormones are a vicious force and the steroids amp that way up. Maybe your son is going through a hormonal change{ we can't always see external signs when hormones shift} and with the steroids it becomes even more intense than that of a regular teenager! Good luck.....this teenage thing isn't easy!!!!!!! 

Bradley sees the endrocrinologist also and has been showing signs of puberty the last couple of years. His testosterone levels have been increasing with each 6-7 month visit. So if the levels are still increasing, perhaps that explains some of this as well. The other thing is my daughter and son are very close. She is 20 now and is about to get married. She is moving to The state of Washington in a little over a month. I think this may be causing some stress for him as well, just knowing she is leaving.
Tonight Bradley told me that he was already upset with this student before this incident occurred. The day before, this student was sitting behind Bradley and was talking about students who are "retarded." He then said in a low voice, "and I think Bradley is kind of retarded, too." I think some kids at school have the idea that if a student has an IEP, they have learning disability. Bradley only has an IEP because of his physical disabilities. He is an A/B student with an occassional "C." I don't know who it upsets more, Bradley or me. But I can see how this prievious incident may have added to Bradley's outburst with him when he handed Bradley a fake detention the next day. Kids can be so cruel, even in High School.

Oh, that is the type of situation that would drive Simon (13) nuts too, so can totally understand it.

Tonight coming home from a friend's house, our next door neighbors (girls) were staring at Simon as he wallked (waddled) passed (they stare at me also like I am from Mars, I really do not like those children). He apparetnly heard (or thought he heard) them laugh at him, so he made a face and a loud "blah" noise at them (I have heard them laugh before at his school-bag on wheels). This embarrassed his brother who was following behind, so he ran up and tapped Simon on the head, who then completely lost it and a fight erupted at our front door, and the mean girls got to witness the whole thing, snickering. We tried to explain to brother William that the supportive thing to do would have been to put his arm around his brother, or to at least ignore Simon's outburst since he knew those kids were not being nice to his brother. But all he kept saying was that it wasn't right for Simon to make a face at them either, which I agree with and we dealt with separately.  (I'd personally like to spary those sneaky, nasty girls with the garden hose! "Oops, I didn't see you there, so sorry")

Yes, there are some cruel children out there, and way too many adults who aren't paying attention to what is going on.

I just hope one day those girls mature more and realize the hurt that they are causing Simon. I don't want to make kids feel sorry for Bradley, but I think if they really stopped to think about the seriousness of Bradley's condition, they would think and act differently. I do think the students in Bradley's class in general do understand and have compassion. There are just some who still have a lot of growing up to do.

My son is 6 and not on steriods, he has behavior issues. We even did Parent/Child Interactive Therapy. It is part of Duchenne, he also has sensory issues, academic issues. Don't get me wrong part of it, is just being a boy. We have chosen not to put our boys on steriods, at leat not yet. The side affects of the drugs are just not worth another year of walking. Our sons are very active still and doing pretty good.

We as parents have a big voice for our sons. If I were you, I would make sure that the teachers and principal are fully aware of the behaviors of other children that are affecting your son. These kids need to learn what your sons condition is. MDA will send a representative to talk about Duchenne. You are an advocate for your son, no one else is going to stick up for him like you. If kids are bothering Bradley, you need to do something about it. Write a letters to the teacher, principal and parents. Bullying is unacceptable!!! Protect your son

Lisa Jones said:

Tonight Bradley told me that he was already upset with this student before this incident occurred. The day before, this student was sitting behind Bradley and was talking about students who are "retarded." He then said in a low voice, "and I think Bradley is kind of retarded, too." I think some kids at school have the idea that if a student has an IEP, they have learning disability. Bradley only has an IEP because of his physical disabilities. He is an A/B student with an occassional "C." I don't know who it upsets more, Bradley or me. But I can see how this prievious incident may have added to Bradley's outburst with him when he handed Bradley a fake detention the next day. Kids can be so cruel, even in High School.
You are right, Kristin. I have been thinking about emailing the principal. We are going to be going for Bradley's medical visits this week, so he won't be back in school unto Friday. Maybe she wuill keep an eye on this boy and how he is treating Bradley. She has been helpful in the past. Just last tear, she got the school involved in Bradley's Race to End Duchenne. It seems she would be willing to help in this situation as well,

No Problem. You it's not easy, It seems that we need to be in fight mode for our boys. It's hard to turn it off, at least for me. I am always ready. I tell the teachers not to take it personal. They know we are our kids biggest advocate. All we want is for our boys to have their needs met and be protected from negative individuals. It's not babying them. My son is a toughie when it comes to the home, but outside of the home he doesn't know how to stand up for himself verbally. He is small for his age, I am finding that to be common with the boys with DMD. Kids will tell him he is a baby and when he tells them his age, they say no your not. Unfortunately, this is our life. I still have to tell my daughter she is a carrier and should not have kids. I passed the gene on to all 3 of my kids. I don't want her taking the chance. I don't want her to go through this.

There are new reproductive technologies that would allow you daughter to have kids without the risk of DMD.


 
Kristin Linke said:

No Problem. You it's not easy, It seems that we need to be in fight mode for our boys. It's hard to turn it off, at least for me. I am always ready. I tell the teachers not to take it personal. They know we are our kids biggest advocate. All we want is for our boys to have their needs met and be protected from negative individuals. It's not babying them. My son is a toughie when it comes to the home, but outside of the home he doesn't know how to stand up for himself verbally. He is small for his age, I am finding that to be common with the boys with DMD. Kids will tell him he is a baby and when he tells them his age, they say no your not. Unfortunately, this is our life. I still have to tell my daughter she is a carrier and should not have kids. I passed the gene on to all 3 of my kids. I don't want her taking the chance. I don't want her to go through this.

First of all let me say that I feel for the lot of you who are struggling with this.The second is this; living with DMD is hard enough on its own and then to extend the lives of our children we add a steroid and this just takes the emotion and amplifies it.Yes, go right ahead, blame it on the steroid because it is to blame, partly. The one place where blame should never be placed or even hinted at is at the child with DMD. It is up to US! The parents, the teachers, the school administrators and the peers that need to change the way we think and act around this boy with a handicap that we do not even understand. The problem with teachers and all others outside your family is that they are going to treat him like everybody else, and he is NOT like everybody else. We as parents need to educate our child's teachers so they know the dangers and accept the differences.

@Kristin I am sorry that you feel such burden with your kids. I second Andrea's comment that there are reproductive technologies available now to screen the DMD eggs.

Kristin- there are amazing things that can be done in the medical field if your daughter wants to have children without DMD.  I was so surprised at was available four years ago; I am sure there are many possibilities that will be available when she is ready to think about having babies.

This post was helpful to me.  Thanks all that replied.

 

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