When will I develop my thick skin?

[hkflanagan]

Hi! I posted this on the Message Board, but haven't gotten responses, so maybe the Bulletin Board is where I should post messages like this?

Nicholas is my oldest. We have been having problems in the family with cousins not being nice to him. Some of my sisters say they have talked to their kids about Nicholas, but it's not helping. The biggest problem is Michael who is a year older than Nicholas and doesn't do well with kids, he's one of those brilliant people who doesn't do well with other people. Nicholas spits, hits, kicks, and bothers anyone who is mean to him or who is ignoring him. This cousin does both, but it's always Nicholas who gets in trouble. Nicholas can't stick up for himself, isn't talking well at all, and is very different from the "normal" children. The cousins are having a hard time understanding that Nicholas is different and special. What do I do? Should I just talk to this cousin (and all the others, too) myself? What do I say to children about kids with Downs? It seems like my family, and my husband's family, doesn't want to deal with this situation, they just think if they ignore it, it will go away. I can't deal with this anymore. It's a big reason why I moved far away from them three years ago (but we're now looking to move back. I'm having second thoughts!). As I tucked him in tonight, he said "stop Michael mean me". Even though Nicholas acts like this bullying doesn't bother him, I know it does.

And what do I do about other people who are bullies? At the same that we had the problems with cousins, there were neighbor kids who were absolutely rotten to Nicholas. I've only seen behavior like that in the movies. It reminded me of "Radio", I was absolutely fuming! I feel like never letting Nicholas be around other people, but I know I can't do that. I am just sick right now and don't know how to handle this. I thought by now I'd have developed my thick skin, but I haven't.

Please help!!!

[ooginal]

Hello HK,

I don't think there are any magic answers for your problem. We have a similar problem with Daniel and his nephews....They are 15 years younger than he and yet, he is scared to death of them...They are unruly and Daniel can't make them be nice to their Mother or himself...Our answer was separation...So long as he is not near them....there is no problem....I/we will take Daniel to visit his sister very occasionally so he can see her and her two terrorists, but, we are there and watching everything that goes on...The visit is short, but, it meets Daniel's need to see his sister. Noone can change these kids, as in give them an objective, caring, loving and understanding spirit... not even their parents...If they don't like Nicholas, they are not going to - period... Noone can make someone like another... You can talk to parents, but, unless they counsel and CONSTANTLY supervise their kids (very difficult to do)...they will continue this behavior... We, the parents of children with DS, think that people (even kids) should be understanding and loving to the DS child... Some will, but many will not... it is just not in them to be this way.
Unfortunately, separation is the answer.... This also is hard to do....You should not have to stay away from family because you have a DS child....But, you may have to.... Or at least visit them while Nicholas is being watched by someone else..... There will be problems with bullies as well. This is one reason why there are special ed schools... If a DS child does not have bad behavioral problems, they can be mainstreamed through middle school and then a decision will be made whether they will best benefit from mainstreaming in HS or go to a special ed school...Besides behavior, ability to learn is also a factor in mainstreaming... I'm speaking from our experience and I'm sure others in this support group may have different experiences...
There are a lot of people here who are a lot smarter and wiser than I...So, wait and see what others post.
Someone elses advice may be better than the "separation" solution... Lastly, I learned that where I post things in Uno Mas makes a BIG difference in getting responses....You will get replys in this forum. Bob, Father to Daniel, 25, in South Beach, Oregon

[Emilysmom]

Hi Heather...and Welcome home!!! I'm glad to see you back here. A year or two ago, we got this new bulletin board, and everyone has loved the format of it so much.......we do tend to post and reply a LOT more here than on the Message Board now. You can even set it so that you get emails to let you know when your thread gets replies. Pretty cool!
~
First, I'm SO sorry you're having these problems.........we SHOULD be able to count on family members to be kind to our kids, or at the very least....not to be MEAN!!!! We've had a few situations like this over the years with Emily's cousins. I have never known exactly how to handle the situations either. Emily is so kind hearted to her cousins and can't wait to see them, talks about them and looks forward to visits. And sadly, there have been times when our long awaited visits end with Em being totally ignored or stared at. GRRRRRR. Last summer, one cousin got frustrated with her for not being able to fasten the seat belt in the car (a totally different kind of seat belt for Em....she could have worked it out with a little time) and her cousin screamed at her "geez Emily, can't you do ANYTHING without help"?? That was my cue to stop waiting for the kids parents to give them "the talk" about how it feels to be treated like that. I let that cousin know that I would NOT tolerate Emily being talked to like that.....and that her fingers were not as strong or coordinated and that she needed patience and tried to make her understand what it would be like to not be able to do things, and to have a cousin who she adored talk to her that way. Honestly....I think she really assumed that Em COULD do stuff, but just chose not to. You know? She has been much better since then. As Bob said, you can not make kids be nice.....but I will never stop trying to convince them that it HURTS our kids with Down syndrome to be treated badly every bit as much as it would hurt them.
~
You know how when your kids are hurting, YOU hurt too? I think other kids parents just don't FEEL that as keenly as we do....simply cause it's not their kid being hurt. So, I'm afraid they don't feel the need as much to explain or to work with their own kids on how to treat our kids. If you've already talked to the parents of the kids, I think it would be appropriate to talk directly to the kids in front of their parents......tell it like it is. Tell them how badly they are hurting your kid and that you will not allow it to happen....just like you would not allow your child to treat them badly if it was reversed. Maybe they just need to understand a bit better about what is involved with Down syndrome. I think kids assume that since kids with Ds can't EXPRESS their feelings as well with words, they must not HAVE feelings!!!
~
Enough rambling for now......I do understand, and hope things get better.
Susan

[shellk]

;)Just wanted to say that we have and still go through this at times as well. Take for instance my oldest daughters birthday a few weeks ago...My best friend in the whole world came with her DH and son and he son is very intelligent and also rude and mean..On more than one occasion my 2 oldest heard him call Kourtney a retard and an idiot and stupid, just to remember the 3 that hurt me the most.
Well, I decided to wait for a couple of days to confront my best friend on her sons behavior, and she came over to visit without her son and I watched her around Kourtney something I never really paid attention to (we have been friends since we were 15 and are now 31 and 32) I noticed that she was making ugly faces at Kourtney anytime Kourtney touched something of her..and I asked her what her problem was and she said to me. "I really think that Kourtney is a vicious child and that she does most of the things that make other kids not want to be around her." "And you should really look into having something done about this, she is mean and yells all of the time."
Let's just say best friend or not I felt like punching her in her mouth, I flew the coupe and told her what my other kids had said about her son and her reply was."He is only protecting himself from her" WRONG ANSWER !!! I realized that his bull headedness came from her, after a VERY LONG talk about all of this we finally nipped it in the bud and things are fine. I know that it is not fun when you feel like yours is always the one bieng picked on....See, I have a tendency to pick back, if a child is mean to Kourtney I have a problem with whispering in that child ear, "Hey, what if I said that to you or did that to you" Not everybody thinks that is right but, hey I am not everybody. I feel really bad when someone picks on any of my kids and have a bad habit of confronting the person about it. I wish you luck with this.

Hug your little one for me.
Good luck
Michele

[christie]

K, in my little opinion, this is a BIG part of why mainstreaming is sooo important when it comes to the other children, NOT just our children with DS. Luckily for us, both Christopher's cousins were in preschool with a child that also had DS before Chris was born and other children with disabilities along the way. When Chris was born and to this day, NOOOO biggy for them and both girls are the BESTEST cousins one could ever ask for ;D

I personally think you will meet people that have compassion and some that just don't and sadly that can include family members As they say, you can't pick you family BUT you can pick your friends. Personally I would try talking to them at least once to give them the benefit of the doubt BUT you can't make another have compassion they have to have it or find it on their own. Just my thoughts... Sounds like Nicholas' cousins could benefit from being in a class where ALL kids are included.

Ooginal, I read your post, Hmmmm have to say I disagree on your theory of who can be mainstreamed or included in middle school/high school. Although my son is in a private school for kids with Exceptional needs it is in noooo way because of his behaviors (and yes he does still have some) it is BECAUSE our distinct has NOOOOO clue how to include and ALL the time I have spent trying to teach the district, Chris has lost much valuable learning time and because of that, both Colin and I CHOSE to remove Chris from the district, not because the district wanted to remove Chris. Maybe where you live the districts do it just fine BUT here in Jersey, or at least my section of Jersey, the schools have noooo clue and the child is set up for failure from the get go even ones with noooo behaviors and good learning skills, unless you are an honor student

I have said over and over again, talking bout our district, for Kodi Lee its SUPER but thats because she is an honor student and luckily, just breezes thru school BUT if I had a child, not even DS or any other major disability, just say maybe not an A student, I would worry they would be lost in the cracks in our district. So taking on child, a bit more like Chris, noooo way they have a clue and in this day and age I find that amazing

Yes, you will have bullies of all ages and in all classes, BUT I am a true believer that kids are NOT born that way they become what they learn

I also am a very BIG BIG believe that when our kids with DS behavior is bad, DS should not be made an excuse.

I hope you don't mind my shareing but I do think that both Nicholas and Michael need to learn to respect each others space

Just my thoughts...

CC

[christie]

BTW in my ramblings, I forgot to say the most important thing....

WECLOME TO UNO ;D ;D ;D

CC

[ooginal]

To CC,

Our son did go through public school, all the way to 12th and all that I said was based on our experience - (what happened) not "theory"...You (or I) may not like how the school system does it in Florida. But, that is how they do it...at least in the county we lived in
(Okaloosa County)... I made it clear that I was speaking from our experiences... For the "special ed kids" who were mainstreamed, at the end of middle school, the school system made a decision whether the child would continue to be mainstreamed through high school or go to the special ed school...Had Daniel been severly MH, he would not have been mainstreamed. That is also true if he had extensive behavioral problems. This was all explained in Daniel's Story, which I made available to you... Had you read my post to this problem and Daniel's story more carefully you would have understood....this was our experience...not our theory... I also mentioned in my post that others may have had different experiences...I recognize that. You obviously did and your not happy with how NJ handles things...You've chosen private school...I would not disagree with how you handled your situation...You are in NJ, you know the problems with the school system, and decided on a different course of action... I'm sure you are doing what you believe is best for your child... Have a nice day...Bob

[Robin]

OMGosh, how awful your Nicholas is having to put up with this, it broke my heart to hear what he said to you when you tucked him in bed. You do NOT have to develope thick skin, no no no, cause if you do then Nicholas will have to and that is wrong, no one should have to be mistreated, MOST ESPECIALLY because they are different. I think you have been kind long enough and I say just stay on those kids non stop until their horrible deplorable behavior stops!!! And I think having a long long heart to heart with family members is long overdue. Would any of them allow their child to be treated badly? I say put your foot down and say this mistreatment is no longer allowed by anyone if they want to see you and your family. The neighbor kids can be rotten too, we have also had that issue as well as the family issue. I told the neighbor kids they were not welcome here if they cant be nice to Chase. We have a trampoline and a pool they all want to play in and on and I have reminded them it is all Chase's stuff and they can either be nice or go home and dont come back. They have gotten so much better. HUGE {{{HUGS}}} to you, I know it is hard, just remember, you are Nicholas's best advocate.
hugs, Robin

[christie]

Ooooops sorry Bob, I meant to type your "school district's theory", NOT "your theory". Forgive me it was late when I posted that and I get soooo steamed at how districts come up with some of their thinking, I get carried away

Sorry if it sounded like I was questioning you or what you chose to do with your son, I did not mean to do that, HONEST

But when I read your district at the end of middle school and begining of High School decides if the child's MR is too much they they ship them off to a special schools, Yikes I don't get it If there degree of MR is tooo much. in your districts mind, Hmmm then why was it OK for them to be included in elementary school?? Just wondering about your districts thinking, not yours, not attacking, honest, I just have an inquiring mind as to how these districts come up with things

I also get steamed that people (and again I am not pointing at you BUT I am at your district) think if one is included that must mean their less affected some how by the DS Hmmmmm Chris was included in public school and now is not and that has nothing to do with how he learns or his behavior it has to DO with how the public school failed him

Yes I did read your story you sent me BUT in all honesty it was a while ago and I don't remember today all the facts that was in it I am lucky if I can remember everything that happened today, LOLOL

HEATHER, I did not mean to get off your post topic, I apolgize to you also and I truly HOPE this situation can be worked out with your family I am sure it is heart breaking for you girl

CC

[momofrussell]

Well, it is so sad that your son is getting treated like that. I personally would have to do "the talk" with your family and the neighbors that are bulling him. NO ONE, DS or not, should be mean to others. So the cousin should be put in his place and make sure your son is corrected too for the behavior.. so it isn't one sided. Does this happen at YOUR house or the other house? I would be curious to know if it happens in YOUR presence. In YOUR home, and/or around you, you have EVERY right to make sure that behavior doesn't happen to your son. If you wait and think other parents are going to do their job, or "the talk" , they either don't, or don't really do it the way it should be done. IT's your son and YOU need to put your foot down.


I am going through this with my daughter, Regan (non-ds) who is 11. I have rules in my house and NO ONE gets to be rude in my house. I also have had her friends wonder about Russell in the past, not meanly, but they giggle at how he acts, ect. And we have had the talk.

Sounds like the neighbors AND your relatives need a good talk. Keep it polite and factual, and keep it towards the whole, "treat people how you want to be treated" thing instead of making it a DS thing. Because DS shouldn't be a factor... just the behavior.

No RUDE PEOPLE! LOL

Oh, and WELCOME to Unomas!!!

A.

[Kristin]

I don't think it is easy to develop thick skin when it is family because it seems to hurt more. I find that a lot of the blaming and bullying comes from ignorance on the part of the "smart" person. I find that most people have not clue as to how our daily lives work. We have made an effort to take Clarice, age 5, with us everywhere. Sometimes it isn't easy, but we feel it is the best way to educate others. I think the people teasing and hurting Nicholas are ignorant. They don't understand Nicholas, nor do they wish to take the time. Clarice has educated many of our friends and relatives. I think that mainly it has been a positive thing. She had kindergarten in a public school in a special day class, but she also attended the regular after school daycare. Although she isn't potty trained (a long story and lots of frustration) and she had an aide with her, I still meet children from her school who will point her out to their parents and say "There is Clarice. She went to my school last year." I will say that the kids have usually been really positive, and the parents often don't know what to say. As a high school Biology teacher, I integrate a project where we examine genetic disorders. Part of the project is intended for the students to think about all of the services and support needed for each disorder. At the end of the project many of my students comment that it was the best learning experience. Hang in there...I think a lot of your problem stems from a lack of understanding "your world". I've been luckily enough to have friends with older children who think the world of Clarice. Although she doesn't have neighborhood friends yet (we moved 3 months ago) she has some teenage friends who think the world of her. Try inviting some of Nicholas's friends to a DS Buddy Walk if there is one in your area. It could be a good educational experience for them. Kristin