Children made fun of because of ALS?

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brooksea

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Have any of you with children gone through your child being made fun of at school because the parent has ALS? I know children can be so cruel, after all we can remember our childhood. Right?

I was dreading this day and now it has happened during such a stressful and upside down schedule for all of us. My husband would go to eat lunch (well, he wouldn't eat so as not to embarrass our son) with our son at school whenever he asked him to if he could. My husband said he thought it best to quit going, as he noticed little whispers and looks in his direction - he is not at all paranoid. And also he needed a chair instead of the little bench the children eat on and the freaking janitor argued with him about whether he could use the EMPTY folding chair! Sheesh! So he hasn't been in a while. The last time is when they had "animal" day and we went to the school with our little dog. No one could understand my husband, so I had to take over explaining what type of dog she was, etc... All the children would parade through the line looking at the animals and we would explain the animal's breed.

Well, today at lunch several boys were making fun of our son taunting him with "Your dad has ALS, he's so (insert word)!. We saw your dad at the store, he's so (insert word)!" Fortunately one of the coaches was passing by while my son was crying and asked what was wrong. He then went to recess where another child tripped him and he landed in the mud.

Now I will tell you the good side of the this: The two coaches at the school have stepped up to the plate, so to speak! The female coach does carpool and she knocked on my window telling me our son had a hard day and he would probably tell me about it. Well, of course, I'm thinking "What did he do now?" Then she said I will be praying for you! I burst out crying! Oh my! My little boy!

He was a trooper when he got in the car. I asked how his day went and he told me of the events. I then told him that I thought the school counselor ( who's sister died of ALS ) needed to know about all of this. He told me "No, please , Mom NO! I want to talk man to man with Coach SoandSo!"

God help us! And please pray for us!
 
Hi Brookesea...

I am heartbroken by your post. I can not even believe..how awful children have become! Way worse than our day. However, not to 100% blame the kids, it is ignorance. If the kids in your son's school were more knowledgable about the disease, maybe the taunting would not happen. (as much anyway)

we have many 'cancer' 'breast cancer' and other diseases that are public and well known. The kids see it all the time. "ALS"..as my dad (who was diagnosed) says, "is not a known disease. the % of people that have it = a small town in one area. Not enough people know about it."

I know it is a long shot, but how can this situation turn into a awareness at your son's school. The more information those kids have, the more understanding they might have.

Forgive me..I don't have children. But believe in education and educating those that are ignorant about the disease.

Suzanne
 
CJ - my heart is breaking for your son. My God grant him stength!
 
CJ, you are so right. As someone who was bullied up until high school I know how cruel kids can be but I don't think that they are any worse now that when we were kids. In fact I think that in many ways they are better than we were because there is more awareness of disablilties in general and they are better educated.

Maybe you could suggest that the coach talk to the school counselor before he talks to your son so he knows in advance what to say in the man to man and has the knowledge he needs.

We are all thinking of you and your family and hope that your can get the support he needs and the bullies can get what they need (education). I blame the parents who haven't taught their kids the morals they need as in, "There, but by the grace of God, go I".


 
Hi CJ,
I really feel heartbroken for your son. All children should be taught compassion no matter if they realize or understand what disease a person is living with. I hope this opens up the eyes of the parents and staff at your son's school.

I don't know the age group of these kids, but it might help if they participated in a fundraiser to benefit ALS or MDA research. Not as a punishment, but as a learning experience, which will benefit the charity and teach them compassion for other human beings.

Your son is a very strong young man and showed extreme self-control and maturity to not lower himself to their level and to want to talk to the coach himself. What a trooper!

As for your husband having lunch at school with your son, he should definitely go back and spend as much time with your son as possible. These kids will get the picture of what love and life is really about after seeing the two of them forging through this disease together. :)

Ya'll take care and please keep us posted as to what the coach has to say.
 
CJ, my heart is breaking for you to have to deal with this on top of everything else! What a good parents you both must be to have raised such an understanding, mature and wonderful boy! I have to agree with the above posts on educating those bratty kids! They obviously do not have parents that have taught them any better. Your son sounds elementary school aged? Personally, I think it would be a very good teaching experience for all the teachers there to educate their students on diseases such as ALS, and others that make a person not act like everyone else. And, how to treat them with the dignity they deserve! And, while they are at it, to talk about bullying! NIP IT before they get older and become even meaner human beings. If the parents cant get it right, maybe the teachers will. As for your brave hubby going to school, I am thinking that is where his son got his greatest lesson. Good for him! You are all in my thoughts and prayers!
Hugs,
Kari
 
HI cj,
It breaks my heart too.Your son is going through enough without kids saying mean things.But kids aren't the only ignorant people around,Larry has been using the electric carts in the stores for a few months now as it wears him out to walk with me in the grocery store ,yesterday when we went he made the comment that people are just plain rude they see him & don't move he has to stop or try to go aroung them because they look at him like he is some kind of freak & says things that he can hear,it makes me sick how rude people are even adults,give your son a big hug for me for being such a wonderful child.God Bless your family.
Sharon
 
Brooksea,
I am so sorry. I am an elementary school teacher and have experienced a lot of these situations. My experience has been that children are generally very accepting and compassionate. When they are not, it is often based in fear and ignorance. i strongly agree that educating these children is key. However, your own child needs to be comfortable with this idea. I have been in situations in which a family situation, illness, crisis, etc is shared with a class of children without the affected child there so that he/she doesn't have to experience the discomfort of the discussion. At other times the child will actually lead the discussion. This can be very empowering. It's important to gage your own child's comfort level. But something clearly needs to be done. I would suggest, perhaps, arranging for a team meeting on behalf of your son with his teachers, principal, school psychologist, etc. This might give you the venue to come up with an action plan.

Children become very frightened when they don't understand the illness of another child's parent. Will that happen to my mom? Or my Dad? They also love to be brought into the loop and made a part of a support system around a situation. I think the idea that one of the posters had about having the school do a fundraiser is a great one! This will give the students' the opportunity to become educated and instrumental in a positive way and it might give your son a source of positive attention from his peers, their parents and the school staff.

It is so heartbreaking that at a time when you need all the love and support of your community, instead you are having more burden added to your emotional load. My wish for you is that your community will gather around your son and help to hold him up during this difficult time rather than beat him down.

And one more thing, what the heck is with that custodian?! He needs a talking to!:evil::evil::evil:
 
First of all WELCOME to our family forum Le Le! Your post was right on target, and I am glad that an actual teacher put some insight into what is up with those kids! and...one more thing...the custodian?! Screw the talking to, he is lucky he lives so far, or I would have him pay a nice little "visit" with me out back!
Hugs, Kari
 
Dear Brooksea~ Hey, girl. I've been thinking about you and just read your post. I am so sorry. My daughter is in high school and there are still some kids that call us freaks. It can be pretty pathetic.

As a former elementary and middle school teacher, I highly agree with LE LE about the meeting. Include the principal, teachers, counselor and coach(es). You might take in lists of websites or journals they could use for research for themselves. I would also have them all sign in at the meeting and I would document what the meeting consists of. I believe in a paper trail if there is ever a need for it. That way you will have documentation in case certain children should continue to harshly tease your son.

I know this may sound a bit extreme to you. At least take notes of the meeting and list individuals in attendance for further reference. I hope I've helped. If you would like to visit, send me a message. Hugs to you, Jacque
 
Hey, your son is in elementary school, isn't he? Could the teacher perhaps do a short sports unit or baseball unit and include Lou Gehrig? There is a great book that was a medal winner a few years ago I used with 5th graders to introduce the illness when hubby was diagnosed. I'll keep thinking...
 
Actually Jacque, I think that is a great idea about teaching the kids about Lou Gehrig! Good thinking!
Hugs, B-bear
 
CJ..my instant reaction was those horrible children. My defensive protective side instantly popped into my head. I dread if and when this happens with my children. I have had the teachers prepare the classroom if Andrew is to attend. I am so proud of your husband attending the events. My hubby has really withdrawn from those type of activities. When he would go the teacher would explain to the classroom about the illness..kindness..tolerance..all that good stuff. Although painful for us as parents...our children are going to grow up to be kind and compassionate people. I often feel frustrated that this is their childhood experience. But, they love their Dad more than anything..and that is all that matters. Thinking of you and your families!
ps- I like Hopeful Warriors idea about the Lou Gherig lesson
I am trying to convince my hubby to go into school and show the kids how he uses the eyemax system. I think kids would be amazed that the boys Daddy can talk with the blink of his eye!
Time for coffee...lots of coffee...bring it on Friday!
 
CJ I am so upset for your little guy and all the other kids that have to deal with this. Other kids can be so cruel. I loved Le Le's suggestion of setting up discussion with your son's class regarding ALS and hopeful warrior's addition of Lou Gehrig. If just one of those kids developed compassion and supported your son, it would be worth it.
Thinking of you guys.
 
CJ.
My heart broke when I read your post. It usually takes one bully (usually with his own insecurity issues) and the rest will follow in order to stay with the group that doesn't get picked on. I don't think some children learn compassion at home. It sucks that you have to deal with this along with everything else. I love the idea of educating the school. Perhaps an assembly where a film could be shown. And definitely teach them about Lou Gehrig. I also love the idea of an ALS fundraiser and make sure those brats have key roles. The school counselor should be of help with this. My thoughts are with you and your family.
 
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