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"wierd"

Submitted by an LD OnLine user on

I don’t know how much to celebrate the fact that my autistic son is starting to try to communicate with non-disabled children his age and how much to mourn the fact that in response to his attempts at socializing other children call out to anyone who will listen, “that kid is wierd.” This week, my son approached a group of boys and tried to talk with one of them about the cartoon character on the boy’s shirt. Everything was fine for maybe a minute. My son didn’t know the appropriate things to say and before long was off topic all together, using sentences that didn’t make sense. Having maxed out his ability to interact he wandered off. During the interaction, one of the boys had commented that my son was wierd and after my son wandered away he said it again even louder. I walked up to him and said, “your right, he is “wierd,” he is autistic and it makes it hard for him to know the right things to say and how to act. I don’t mean to be critical of you but I do want you to know that sometimes when someone is acting “wierd” there is a reason for it.” I probably could have been a bit more articulate but the boy seemed to understand what I was saying and to take it well. Something similar recently happened at the playground at the school where my son has started mainstreaming 45 minutes a week. I didn’t say anything then in part because I didn’t want to do the respond inappropriately and in part because the girl, who was repeatedly announcing to all that my son “is really wierd,” probably has issues of her own. I’m no expert but from the little I’ve seen of her I’d guess ADHD. Anyway, my question is… what do I do now? My son is supposed to mainstream full time in the fall. He’s been in special ed 3 years, he doesn’t understand that he or his classmates are different and they don’t rub it in his face that he is different. I can’t keep him in special ed because he is too high functioning but there is no bridge over the ocean between secial ed and regular ed. Do I throw him to the sharks and hope for the best? Do I fight for an aide who can help facilitate social situations? Do I homeschool him so I can protect him. He has so much confidence now but I’m afraid that could be erased in a week of school. Getting a qualified aide in our financially struggling schools is like trying to pull to teeth from a large predator, especially for a child that is advanced when it comes to academic skills. Homeschooling isn’t really very realistic because he needs a lot of structure and also to be around other children to practice social skills. At the moment, I’m feeling quite overwhelmed thinking about it all. Please give me your thoughts on the subject.

Submitted by Anonymous on Thu, 04/17/2003 - 8:28 PM

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Rose,

This must be scary for you. I would make sure he knows how you feel about him. (I am sure he already does.)
Really, in the end, our children’s self esteem is more affected by what we think than anyone else. Your son comes from a safe place. Many kids don’t have parents who think they are great. They are truely the ones that will suffer in the long run.

Teach him that those kids who are mean don’t understand what it means to be nice because they haven’t experience kindness at home.
It is great that he is seeking interactions with others. Are there any children he can practice with cousins, your friends children etc?

Submitted by Anonymous on Thu, 04/17/2003 - 8:47 PM

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We are so very lucky to have had our boys 12 months apart. The older of the two has visual processing issues that are slowing him down when it comes to learning to read and write but he is truely gifted when it comes to language, social skills and creative play so he is the best therapist we could have asked for for our autistic son. He completely understands how to get the best from his brother. Unfortunately, we can’t expect other children to make the same kinds of accomodations.

Submitted by Anonymous on Thu, 04/17/2003 - 9:41 PM

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Gosh, Rose, what a hard decision you have. I wish I had a good answer for you. I do agree with LindaF. When my children asked “How come Rachel doesn’t have to wear her seatbelt?” I would answer, “Maybe Rachel’s mom doesn’t love her as much as I love you”. So, maybe you could say that most kids who make fun or are cruel to others usually feel pretty lousy about themselves.

Maybe others will answer that have more “social” experience..

Submitted by Anonymous on Thu, 04/17/2003 - 10:43 PM

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okay here is my kid’s answers!

Joey 12 says,”you know what, I really dislike norms” ( in explanation,he says this is like a nerd,normans, you know MOOOOM normal people)

John 13 says,” yeah, well I might be weird, but I am sure better looking then you are”.

Want to just grab them, don’tcha? It hurts my whole body not being able to intervene. This is definitely one of those times the kid has to do it themselves.

Practice makes perfect. We have spent many times going over what was said that hurt so bad,and what they will say next time, kind of thing. My two are only 15 months apart. The thing that will get my oldest madder then anything to the point of violence is when someone else, besides him, says things to his brother. Same goes for his younger brother.

Submitted by Anonymous on Fri, 04/18/2003 - 12:17 AM

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Rose-
You don’t say how old your son is, but something that has worked well for children in the lower grades is to arrange with the teacher in the new classroom to be present to educate the classmates about autism and what it means for your son.

You can head off some of the comments about being “weird” as you explain some of the more common behaviors that you son may exhibit and more importantly, how the other children can help him by responding in a certain way. For example, since he has difficulty with spoken language but was trying to communicate about the cartoon character, maybe the child with the shirt could name the character for him. Tell them how they can help you son and how important their caring and inclusion are to children with learning differences. They may really rise to the challenge when given the opportunity.

On the other hand, I would explore with the teacher the issue of teasing and other bullying acts and see how those are handled and what policies the school has in place to deal with them. These policies should be reviewed in every classroom and kids should be encouraged to let the appropriate adult know if bullying and teasing are taking place.

Submitted by Anonymous on Fri, 04/18/2003 - 2:02 AM

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Alex is only 5, he’ll be 6 in september. He looks so “normal” and is high functioning so people have high expectations of him, most people don’t get his autism even when they’ve been told. If only they knew how many hours of intervention and therapy it’s taken to get him from the non-verbal, tantruming, obsessive, spinning, head banging littlte guy he used to be to where he is now. Unfortunately, he now often uses the wrong words and misunderstandings end up leading to serious frustration. Something as simple as saying he wants a bottle when he wants bread or saying yes when he means no. He gets the wrong response to what he thinks he said and reacts strongly to the injustice. What’s worse is that people don’t know that he means to use other words but they come out wrong and then people get mad at him for saying the wrong thing. Grown ups can be as bad as children when it comes to that. People are decieved by his smile into thinking that his actions are intentional.

I like the school that he will be going to in the fall. The principal and his teacher seem like good people. Alex was supposed to start going to kindergarten for one day a week starting last october. They decided to start him out going part of the day. He’s been going 45 minutes a week ever since. Obviously we’re not getting to our goal of a full day. The teacher has made it clear that Alex doesn’t belong in a class with more than 20 children so if they raise the class size because of budget cuts we’ll have to deal with that. I actually think it’s good that the teacher is expressing her concerns because that is better than not acknowledging the issues. I know other families with high functioning autistic children who get mainstreamed and the teachers and administration act as though they are oblivious to the children’s issues. All of our children started out in severely handicapped classrooms so we’re very grateful for how far they have come but it’s so scary to put them in the hands of people who don’t realize how hard earned the gains have been and how easy it is to lose ground.

I haven’t decided whether or not to have the teacher talk about Alex’s autism because he is so high functing and I hope he’ll continue to make progress and be able to have a “normal” social life with his peers someday. I’m afraid of what the long term reprecussions of telling the children might be. Does anyone know of any good books that talk about people’s differences without being about things people can see? The only books I’ve found have to do with Down’s Syndrome and wheelchairs and other things people can see. I’m hoping to find something that talks about how we are all different, have different strengths and weaknesses, and that some people need more help than others sometimes.

Submitted by Anonymous on Fri, 04/18/2003 - 2:02 AM

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Rose,

Wish I had the simple answer. Wish I knew what to tell you and your child. All I can say is I understand. I remember when we were in the throws of things and our son was going to a special ed school. We had to beg and plead to get him on the bus service, while parents who drove Rolls Royces used to ask my wife to take their child by car since she was driving anyway. One day after the bus thing had gotten going, aparently one of older kids (one of the tough guy high schoolers) who was much smaller than our son (still in 6th grade) punched our boy right in the head. This was after much verbal tormenting. I had had enough. Waited for the bus to unload. Asked the bus driver to listen to what I had to tell the boy. Kept him on the bus, at the bottom step, I was obviously much larger than him even though he was of high school age. I told him in no uncertain terms to stop harrassing our son and that he had no more opportunities to hit him. The next step was to take him to the principal and I would push for expulsion. Then I told him that I asked the bus driver to listen as a witness, and I offered to tell him in language that he would understand. I cut loose with words I should not have, and asked him if he understood what I meant. I told him I never wanted to have anything but pleasant hellos and goodbyes from him for as long as our son attended this school. Hmmmm. It was the last I heard about problems from this child with ours.

What I did wasn’t right, nor was it a good example for you. But, yes, I understand the parental gut instinct to want to protect one’s child. That’s all.

I’m so very sorry you are going thru this and I hope it passes soon.

Best regards.

Andy

Submitted by Anonymous on Fri, 04/18/2003 - 2:02 AM

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Rose,

Wish I had the simple answer. Wish I knew what to tell you and your child. All I can say is I understand. I remember when we were in the throws of things and our son was going to a special ed school. We had to beg and plead to get him on the bus service, while parents who drove Rolls Royces used to ask my wife to take their child by car since she was driving anyway. One day after the bus thing had gotten going, aparently one of older kids (one of the tough guy high schoolers) who was much smaller than our son (still in 6th grade) punched our boy right in the head. This was after much verbal tormenting. I had had enough. Waited for the bus to unload. Asked the bus driver to listen to what I had to tell the boy. Kept him on the bus, at the bottom step, I was obviously much larger than him even though he was of high school age. I told him in no uncertain terms to stop harrassing our son and that he had no more opportunities to hit him. The next step was to take him to the principal and I would push for expulsion. Then I told him that I asked the bus driver to listen as a witness, and I offered to tell him in language that he would understand. I cut loose with words I should not have, and asked him if he understood what I meant. I told him I never wanted to have anything but pleasant hellos and goodbyes from him for as long as our son attended this school. Hmmmm. It was the last I heard about problems from this child with ours.

What I did wasn’t right, nor was it a good example for you. But, yes, I understand the parental gut instinct to want to protect one’s child. That’s all.

I’m so very sorry you are going thru this and I hope it passes soon.

Best regards.

Andy

Submitted by Anonymous on Fri, 04/18/2003 - 4:43 AM

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Hi Rose,
I can well understand your fears. Although my son is not autistic, he has some very slight “autistic-like” characteristics (and mild expressive language difficulties) and sometimes seems a little weird or different.

The way I deal with this is I volunteer as much as possible in the class, encourage friendships, have him practice memorizing names, encourage lots of talk and communication (my son has a tendency to be very quiet), and I make friends with other parents.

On another note, I recently started working part-time as a substitute special ed. aide. Although I’ve only done it for a short time, a couple of times I had an opportunity to work with an autistic child. I have to say, I was really impressed by how kind and helpful the other kids were. And on the playground, there were other that would say “hello” and “how ya doing?” even when they knew they wouldn’t get a response. I’m sure there are plenty of kids who are not so kind. But I have to say, I was really impressed with the ones who were.

I think the majority of kids don’t intend to be mean, but say cruel things because of ignorance…and yet, there are some kids who are mean no matter what.

Submitted by Anonymous on Fri, 04/18/2003 - 1:05 PM

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Okay - I am probably going to open a whole can of worms — first and foremost please understand I am indifferent about unions. I understand and have studied labor relations, I know this can become a heated topic. I think it is something that could shed light on the situation.

Rose,

Are the aides in your district union? I work in a district where the aides are not union. I have never worked with a group of people who love what they do more. They will stand up for what is best for the kids they support and try to work with the system.

The district has had a two new special ed teachers (due to retirements). They both have made the same comment that their aides were awful to the kids in their old districts, and didn’t want to be there. Their classrooms were full-time so the aides wanted the job not necessarily that type of special ed.

I have seen a similar situation with another AS student he is now is third grade with LRE support from the aide only for writing and field trips. I believe in Kindergarten he was in EMI and first and second grade he had full-time aide. I have found by observing that the students have more tolerance/compassion for this student and other hearing impaired, etc., because they know there is difficulties. The students as a whole and in general have less tolerance for the LD students.

I would think the K teacher would appreciate support if the classrooms are looking at a size of twenty. Is there a self-contained classroom that he could go to half a day to help get those social skills? I would check if the kindergarten class has recess with the entire building, or if they have their own recess. Less envolvement with older kids could be a good thing until he gets his confidence. Is he attending speech and language to work on his language processing skills?

I would also push that he attend school the complete time by the end of the school year. If that is what it states in his IEP, then thats what needs to be done. He would not be in Kindergarten with these kids next year, but it would build his confidence to know that he already knows where things are in the classroom and the schedule.

These are just a few thoughts off the top of my head that I would look into if I were in the same situation. I think the hardest thing for us as parents is to look at the whole picture. If the school districts gets you an aide you could ask to have the parent input at the interviews. I would also give questions to the interviewing committee that you think would benefit their decision.

Good Luck!!!

Submitted by Anonymous on Fri, 04/18/2003 - 2:55 PM

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Alex is big and strong. He’s been in karate for a year and a half (we have a friend that asks if that isn’t like giving a gun to a drunk). He wrestles with his big brother daily. He also skis and swims. Despite the fact that he has been taught not to act out physical aggression as part of his behavioral program, if/when push comes to shove, There’s a good chance he’ll respond in a way that will make others think twice about messing with him. The good news is that this would be predictable behavior to expect from him, if appropriate accomodations are not being made at his school, due to his disability. Not only would the school not be able to expell him, they would have to find a way to prevent further such situations from happening by making appropriate accomodations in his environment. The bad news is that Alex doesn’t know what the social rules are and doesn’t respond to words that confuse him. He may know that he is having an unsuccessful interaction but not really understand why or that someone is being mean. The other side of this is he sometimes thinks people are being mean when they aren’t because he misunderstands the social rules. So it’s important that he not lash out physically at perceived injustice. It won’t surprize me if he does clock somebody someday and they’ll probably have deserved it. I’m more concerned about the impact of the confusing and unsuccessful social interactions that happen when people respond unkindly to his attempts at sociallizing. This is a child who wasn’t interested in interacting with his own mother before he was 3. 2 1/2 years of therapy later, he’s a happy little guy and he’s really trying to interact. I don’t want him to give up because people don’t play nice.

Submitted by Anonymous on Fri, 04/18/2003 - 3:08 PM

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If I’m stressing this much about kindergarten, can you imagine what a basket case I’ll be by first grade. I do volunteer in my older son’s kindergarten class two days a week now. I get to see how much the teacher works on social skills and behavior with the children. Recess will be the most difficult part of the day. He’ll be fine as long as he’s on his own playing with a ball or even participating in a game of chase. It’s when he tries to talk to people that things start to fall apart. Even though kindergarteners have their own playground, it’s the place I worry about most. He really should have someone right there to help facilitate the interactions. The teacher has to stand back to have a good overview of the children to deal with safety issues. She can’t be right there with Alex to moniter his interactions. Unfortunately, there is no bridge between special ed and regular ed. Alex will have some speech therapy at school after class. Hopefully, the speech therapist will be able to get a group together to work on social skills.

Submitted by Anonymous on Fri, 04/18/2003 - 3:11 PM

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Thank you all for giving me a place to help organize my thoughts about this. It really does help it feel less overwhelming.

Submitted by Anonymous on Sat, 04/19/2003 - 2:49 AM

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I definitely think you and the teacher should work together on making a presentation to the kids about autism. One time I read an article about this; people were asked well, how would *you* as an adult react to a person just being plunked into your worksite, a poerson with very different behaviours, without any sort of introduction or explanation? Sure you’d try to be nice — but how would you know what was going on and what you should or shouldn’t do? If most adults wouldn’t know what to do, how can you expect five-year-olds to do so much better?

Something else that may help — this depends on the teacher really knowing her class — look in the class for a quiet, sensitive, highly empathetic kid (this was my daughter’s position in some of her classes.) Assign this other child to be your son’s “helper”. She can show him what to do, help him verbalize things correctly, tell off others that are teasing him, and so on. If you and the teacher are lucky and find the right kind of helper, it can be good for both of them — your son has a support system, and the shy kid learns to stand up and be an advocate. This approach needs to be used with care and closely monitored, because you don’t want to put too heavy a load on another five-year-old either.

Submitted by Anonymous on Sat, 04/19/2003 - 2:18 PM

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As I write this my LD son (age 9) is playing very happily with his completely NT sister (age 6). She too is mature, and socially gifted, and I often think that her admiration and love for him is such a gift. Plus maybe he can date her friends later on!

Rose , I really feel for you right now. My son is impaired socially and it is heartbreaking when they are rejected. Its a hard balance to find - protecting them and letting them learn thru trial by fire. We found a social skills group to be very helpful in building his confidence.
Best of luck!!!

Submitted by Anonymous on Sat, 04/19/2003 - 3:26 PM

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I think too my 10 year old LD son benefited tremendously from his sister. My son did not really know how to play. His sister gave him a part in every game she played and over time he learned how to play imaginary games. I don’t think at the time I realized how important this was developmentally for him.

Beth

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