Why Autism?

[77SU]

I totally get what you are saying. My DS12 is Aspie, and I ask more than once a day..."why us?"!

Why do "normal" kids have to make fun of him? ...Why does my DD9 have get watch other kids tease him and then feel it is her duty to stick up for him? Why can't people accept the differences and just leave him alone?

I tear up every time I ask the "why's". So, why do I keep asking the "why's"?

I have always said there is no one worse than a fifth grader. During the years of elementary and middle school, the fifth graders were the least tolerant. It wasn't just at school, it carried over to church. He was around a different group of kids, but they were still fifth graders.

 

[holeceks]

So far that is exactly the case. My DS is a 6th grader this year, but LY I was emotionally drained all year because of the intolerance and plain 'ol meanness he experienced. We actually moved back "home" to where we grew up (a lot smaller town) because I couldn't handle the assault in the bigger school. It has been better this year, but there are still the kids that make fun of him because he is different.

What made it worse LY is that most parents brushed it off as "kids being kids".

 

[BeckyScott]

Oh I don't even wanna hear that! (la la la la I can't hear you!)

Oldest DS is in 5th grade and I haven't seen it too much yet. However. I was waiting until Middle School for the poop to hit the proverbial fan. But he isn't full-blown autism, we're still iffy about an Aspie diagnosis, what I can tell you is I often describe him as "quirky". Quirky isn't necessarily Aspie, but Aspie is usually quirky. And no matter what, quirky is not a good thing in middle school. He doesn't seem to be too concerned at this point with being popular, but he's already gotten the "popularity life lecture" from me.

My bestest friend here has a "quirky" kid in middle school who has been tormented non-stop for about 3 years now. I am pretty scared about next year.

Youngest DS is in 3rd grade and I am hoping against hope that by the time he hits middle school, all that politically correct-"takes a village"-calling everyone "friends"- inclusion- celebrating differences- all that junk- holds true and the kids that already know him and are used to him will alleviate any hassle coming his way. It worked when he was younger that while the kids noticed he was different, he was also really smart (by their standard, as he was an early reader and has a brain like a steel trap) and being smart they would accept him. However, by middle school, being real smart doesn't mean as much.

 

[SpecEdismyLife]

I get it, believe me I get everything you are all saying 100%. I have my son at home with Autism and the boy I work with at my son's school everyday with it too. I used to ask myself "why me" a lot more than I do these days, but it still comes up now and then when I am crying the bathtub because my son tried to twist my head off my body or something. I realized that my experience with this disorder has given me a specialized skill not many people have, and I have gone back to school and plan to be a special education teacher in order to use these skills to help other children in addition to my son, and hopefully help parents while I'm at it. Just want to say that I agree with everything stated in this thread, hang in there!!

 

[nwhitehead1214]

I have those days. We all have those days. Pray, pray, pray for the answer. I hope that next year at this time we will see the post-- Remember when.......

 

[Schmeck]

Middle school was hard for my 'quirky' girls (no diagnoses, but they have always had a bit of a hard time fitting in, few friends most years, academically very high, etc) but they each were able to find a small peer group that accepted them.

One daughter found her niche in a group of kids that would most likely have scared the pants off of me when I was in school, but they kept each other safe, accepted her for who she was, and never caused any serious trouble. She knew what not to do, even if they were doing it, but I kept tabs on her at all times. She has since moved on from that group, and connected with others. She even has a boyfriend! (Yes, I'm watching that scenario very closely too!)

Second daughter was blessed to find a cluster of other 'quirky' girls (I'd direct you all to their YouTube video, but I want them to remain anonymous here) that really boostered her self confidence in middle school. Too many of them went on to other schools this year though, and we had a rough time at the beginning of school. She's holding her own, but I wish she had her full support group still intact.

For middle school, it's very important to find the person who has the most influence over peer group behavior, scheduling, etc. and make that person your best friend. Sometimes it's the guidance councilor, or the special education co-ordinator. Most times it's one of the aides, who gets to witness things as an almost 'invisible being' to most kids. That person can suggest peer groups for your child, or how a schedule could be altered/tweaked to give your child more support. Of course the aide can't do the actual changes, but he/she can give you some great hints and info!

 

[goofy4mykids]

Debbi801

Amen! You hit the nail on the head!

I am reading a book (Look Me in The Eye) my life with Asperger's. by John Elder Robison . He was diagnosed with Autism when he was 40.

 

[NotUrsula]

Ain't it the truth? We know them, we love them, and even we sometimes just want to explode with frustration after the 54th time of telling them yet again how to do something.

DS11 has issues with instructions. More than two steps and he's lost; and he just can't carry over the idea that once you learn how to do something, you are supposed to keep doing it that way whenever you encounter the same situation. Sunday I just about lost it. We were doing yardwork, and I directed him to pick up the hedge clippings, put them in the disposal basket, then take them to the yard waste dumpster, dump them in, and bring back the basket. OK, he managed that. 10 minutes later, I finished trimming the other hedge and asked him to take care of the trimmings while I dealt with getting a drink for his sister. When I get back he's just standing there looking at the trimmings on the ground. I asked why he didn't pick them up and take them to the dumpster, and his answer was that I didn't tell him to do that.

He's about to fail sixth grade, primarily because he cannot consistently remember to put his name and class number on all of his papers. He loses at least 10 points on every assignment for failure to follow directions.

 

[holeceks]

He's about to fail sixth grade, primarily because he cannot consistently remember to put his name and class number on all of his papers. He loses at least 10 points on every assignment for failure to follow directions.

Not telling you what to do, but does he have an IEP? We had a VERY INTOLERANT teacher last year (5th grade) who flat out told me in parent/teacher conferences that if my DS can't put his name on his paper she assumed he didn't want credit and would not waste her time even grading it! (Keep in mind that on some things he tests in the genius range but has problems following the simplest of directions) That was about 3 minutes into our meeting. I got up and said as I walked out the door that she clearly didn't understand him and I would not even waste my time talking to her without an advocate. I got on the phone with his doctor the next day, got a referral for a family services advocate, called them, and they had an IEP pushed through in 2-3 weeks. The advocate went with my DH and I to every meeting and fought for my DS's rights as a person with a disability. We had other issues with that teacher later on, and our advocate took care of them.

 

[NotUrsula]

Not telling you what to do, but does he have an IEP?

Long story, but we've already fought that battle, and we lost. The school considers the following directions thing to be a core skill, and they will not accomodate for it beyond what they already have (instructing the teacheers to give him written rather than verbal directions.)

 

[bookwormde]

NotUrsula,

For a child with Autism spectrum genetics EF differentials, which give difficulties with linear directions (such as remembering to write there name on the paper) and processing and accommodations for this, are well documented and are relatively standard in IEPs. It is not up to the school to decide this, it is a matter of the IEP team determining he has a need and concern is this area, and what is an appropriate and effective accommodations. If you do not agree with the rest of the IEP team you need to take it through due process. Once you get a “specialist” to give their opinions it will quickly become apparent that the school does not know what they are doing.

Your child should not be “punished” for their ingnorance.

bookwormde

 

[holeceks]

NotUrsula,

For a child with Autism spectrum genetics EF differentials, which give difficulties with linear directions (such as remembering to write there name on the paper) and processing and accommodations for this, are well documented and are relatively standard in IEPs. It is not up to the school to decide this, it is a matter of the IEP team determining he has a need and concern is this area, and what is an appropriate and effective accommodations. If you do not agree with the rest of the IEP team you need to take it through due process. Once you get a “specialist” to give their opinions it will quickly become apparent that the school does not know what they are doing.

Your child should not be “punished” for their ingnorance.

bookwormde

Well said, bookwormde!

NotUrsula, this is not easy to say but I was intimidated by the school administrators who made me feel like an idiot & a bad parent. That went on for 4 years (2,3,4th grades were manageable...1st and 5th not so much because of the teachers). We had originally tried to get an IEP in first grade because he was being sent to the principle's office almost daily for clearing his throat and sharpening his pencil...they constantly used the excuse he was disruptive to his classmates. I wanted him to have the ability to go to a different room if he needed to, but not get in trouble for "being disruptive when he has been told over and over again to stop". We were shot down because on intellegence tests he scored exceptionally well and he didn't need extra services for this...so they said he didn't qualify for an IEP. His teachers in the following years were much more accepting of him and his differences, until we got to 5th grade. I had tried numerous times to reason with his 5th grade teacher and explain his situation, but she said to me over the phone when she tells a student to do something, they are old enough to know they better do it or accept the consequences. Hence, the P/T conference was set up. As I said previously, I ended up walking out of it because I felt like I was beating my head against a very rough brick wall.

We requested another IEP determination in writing, and walked into the meeting without telling anyone else on the team we were attending the meeting with an advocate. You should have seen the looks on their faces when we walked in, they were shocked! The rest was relatively painless.

So, the moral of this huge post is not to give up. Find someone that knows his rights and go in armed!

Hang in there!

 

[NotUrsula]

Sorry, I seem to have inadvertently hijacked the thread.

While I appreciate the input I've been offered, in this case it is up to the school, as it is a private school. In this state they are by law entitled to set limits on what accomodations they will allow in their own classrooms. We can choose to accept their limits, or we can choose to enroll him elsewhere. Given the available alternatives that we have at this time, we choose to accept their limits.

Thanks, folks, and back to the OP's regularly scheduled thread.

 

[bookwormde]

We wander all the time so do not worry about that, yes if you are not in a school that receives public $ it is a lot more difficult to get the proper services. Good luck it is not an easy decision when the public schools in your area are not very good. I would still give them a copy of Attwood so hopefully they can learn something, it is a cheap $25 investment.

bookwormde

 

[Schmeck]

We requested another IEP determination in writing, and walked into the meeting without telling anyone else on the team we were attending the meeting with an advocate. You should have seen the looks on their faces when we walked in, they were shocked! The rest was relatively painless.

So, the moral of this huge post is not to give up. Find someone that knows his rights and go in armed!

Hang in there!

I'm sorry that it had to come to the surprise advocate level for you. The really sad thing is that now you and your child have one of 'those people' labels, that can follow you all the way through public school. Expect a fight every time you need to change the IEP, although I hope it doesn't come to that. It's really sad when a child's well being turns into an us-against-them situation. I've seen it happen so many times, and when something could be really easy to fix if we all took the child's best interests and future potential as the only thing that counted, in reality it becomes a battle to see who has the most power to get what they want.

 

[mechurchlady]

Sorry, I seem to have inadvertently hijacked the thread.

While I appreciate the input I've been offered, in this case it is up to the school, as it is a private school. In this state they are by law entitled to set limits on what accomodations they will allow in their own classrooms. We can choose to accept their limits, or we can choose to enroll him elsewhere. Given the available alternatives that we have at this time, we choose to accept their limits.

Thanks, folks, and back to the OP's regularly scheduled thread.

This board rolls with the punches and often takes side trips to help others.

I think for thread highjacking you should go to the time out corner. Our time out corner is Casey's Coke Corner so set a spell in the corner with chili, hot dogs, chips and a cherry Coke. I will slip you a dole whip when the guards are not looking.

I joke a lot but honestly most of us want the best for kids and to help people so they do not make mistakes and are not bullied by schools. Children need early therapy and training to overcome their limitations and a school that tells you there are no limitations need a massive layoff.

 

[holeceks]

I'm sorry that it had to come to the surprise advocate level for you. The really sad thing is that now you and your child have one of 'those people' labels, that can follow you all the way through public school. Expect a fight every time you need to change the IEP, although I hope it doesn't come to that. It's really sad when a child's well being turns into an us-against-them situation. I've seen it happen so many times, and when something could be really easy to fix if we all took the child's best interests and future potential as the only thing that counted, in reality it becomes a battle to see who has the most power to get what they want.

I really could care less if I have a 'those people' label. The teacher was "old school" who was there solely to earn a paycheck, I had tried to talk to her about it and she was unreasonable. It is our right as parents to bring an advocate for our son to IEP meetings, so we enforced our rights. I am not ashamed for sticking up for the interests of my kid, and I don't think other parents should be, either. For us it was not a matter of asserting our 'power' as you put it, it was a matter of making the year better for our DS.

 

[Schmeck]

I really could care less if I have a 'those people' label. The teacher was "old school" who was there solely to earn a paycheck, I had tried to talk to her about it and she was unreasonable. It is our right as parents to bring an advocate for our son to IEP meetings, so we enforced our rights. I am not ashamed for sticking up for the interests of my kid, and I don't think other parents should be, either. For us it was not a matter of asserting our 'power' as you put it, it was a matter of making the year better for our DS.

I agree that you did the right thing, just giving you a heads-up to what you might experience (hopefully you won't!) in the coming years now. I've got the experience from the other side of the table, so to speak, and hope that my insight can prepare and help the parents here do the best for their children.

 

[BeckyScott]

It so much depends on the teacher.

My oldest DS had some trouble in 2nd grade. But I knew his teacher and while she was teaching regular 2nd grade, she was certified as a SpEd teacher. So she was very flexible and willing to work with me and everything went relatively well.

3rd grade was a little harder, but the teacher was all right. That was the first time I'd pursued evals for him, and the teacher was cooperative enough, it was the SpEd people that balked. But we made it through, a little rough, but made it.

4th grade we had an "old school" teacher, but she was great. I think she'd just seen it all so much that it took a whole lot to throw her off. And she was a good teacher and had enough experience that she could flip from one thing to the next if something wasn't working. She did quite a bit of that for DS, however, it was all "off the record". And I appreciate that she did it. But nothing was in writing so that tripped us up the next year.

Finally this year I pursued it enough, he has an IEP with some minor accomodations. The biggest thing though, was that the SpEd teacher gets him if he runs out of time in class or for test proctoring, and she has been great with him. (she does great with youngest DS too) This is what I think happens, honestly-- the staff all know each other. And just like any other workplace, not everyone is going to get along swell. And I think they know what I've been up against with DS's teacher, although they can't say anything to me. And I think that even though they thought I was nuts and a problem parent, once he got pulled out and they worked with him more, they saw what was happening.

But Middle School calls, and I have no idea what we're in for.

 

[jodifla]

I agree that you did the right thing, just giving you a heads-up to what you might experience (hopefully you won't!) in the coming years now. I've got the experience from the other side of the table, so to speak, and hope that my insight can prepare and help the parents here do the best for their children.

Often, it's the schools that put parents in the unfortunate position of being "those parents." If parents don't advocate for their own children, who will?

The sad thing is, I wonder every day how many children's lives are ruined by "educators" who mislabel them and ship children away to segregated classes where they are basically warehoused instead of taught.