School (and everything else) is going terribly...

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NathansMommy
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24 Oct 2012, 7:08 pm

My son started first grade back in August. He had his ups and downs in Kindergarten, but did well overall (he is very smart - his intelligence is not a concern at all at this point). He is at the same school with the same special education teacher, same aides, same speech/occupational therapist, same kids. The only thing is, everything is going just awfully. Nathan cusses, hits, and refuses to do any work at all. He went from being in a "regular" classroom about 75% of the time in Kindergarten to being in the special ed room 100% of the time now. They cannot put him in the normal class because he is violent and disruptive. He has no friends at school or outside of school. He is sent home from school once or twice a week for attacking his teacher or other kids. He has done virtually no school work whatsoever in the three months he's been in school. We have had an IEP review and a behavior-intervention meeting in the last few months. I took Nathan to a new psychologist who then referred us to a psychiatrist who finally convinced me to *try* medication. Two medications down, no results at all. Not even negative results; the meds have done nothing. The psychiatrist said the next step would be anti-psychotics (the first 2 meds were ADHD meds: Adderal and Intuniv) but we are not going the anti-psychotic route since there is no good information regarding long term side effects of this class of meds and I don't want to completely alter the way my six year old's brain works. I researched the heck out of the ADHD meds and they seem pretty safe, so I figured it was worth a try. Meds are out of the equation for now. The psychiatrist, who is a Child psychiatrist only who has a pretty good reputation in my town and specializes in Autistic disorders, has told me he doesn't know what to do (reassuring, right??) and referred us to a therapist in his office (the psychiatrist has stated that he feels most of Nathan's problems are behavioral, not anxiety related). I like the therapist, but we have only seen him twice and he has stated he is not sure of what he can do to work with Nathan because he is such a "difficult case". I guess difficult because they still cannot categorize a specific Autism Spectrum disorder (he is still PDD-NOS), he is very intelligent, yet nothing is is helping him at all in regards to behavior control or making relationships with other kids.

I don't even know why specifically I am posting any of this right now. I don't even really have a question. I am just burnt out and I don't know what to do anymore. Today was another awful day at school and i've been crying since i've gotten home from work because of it. My son has all the help in the world and teams of people doing everything thing they can for him, but nothing is working. Nothing helps. His behavior is terrible and uncontrollable at school. I had to get FMLA because I have been missing so much work lately dealing with doctors appointments and Nathan being sent home from school. We are SO sweet and loving with him at home, but he has rules and punishments like any "normal" child would have and we don't allow him to get away with being violent or using profanity. Punishment, therapy, medication, intervention at school: none of it works. God knows I love my son more that anything in the world, but I feel helpless and hopeless. I end up angry or crying all the time. I don't know what to do anymore. I feel like I am totally failing as a parent; like I should be able to help my kid, but I can't. My heart is just breaking...



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24 Oct 2012, 8:07 pm

How's his behavior at home vs. school? Is school stressing him to the point of violence, contrary to what one psychiatrist says?


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24 Oct 2012, 9:17 pm

I'm sorry to hear how tough things are for you and Nathan. (((Hugs))). You mentioned having a behavior intervention meeting. Has the school done a functional behavior assessment or otherwise tried to determine what triggers his aggressive behaviors? What data are they taking about the episodes? It seems like they should be able to tell you something about what is going on and have some better options for him. Take care, I hope that things turn around for you guys.



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24 Oct 2012, 10:55 pm

If he's in a school that is mainly general ed, I'd bet even the special ed teacher doesn't have the level of training to address behavior in the systematic way that is done by a Board Certified Behavioral Analyst. Has there been someone observing in the classroom for several full days in a row, taking detailed notes and charts about the antecedents, behaviors, and consequences (ie how the teacher reacted to or handled the behavior)?

I would suggest that you try to find a Board Certified Behavioral Analyst to do a functional analysis at school over several days. Also begin looking into the "non-public" schools in your area, particularly those that have a lot of kids with autism and ADHD. For home, look into ABA therapists who work with high-functioning kids on the spectrum.



miss-understood
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24 Oct 2012, 10:57 pm

so the problems are mainly at school? I agree with Bombaloo and zette that if they aren't, they should be, collecting a TON of data on each and every episode. every little detail... there is a (or more likely more than one) reason/s for it. What is he trying to avoid? gain attention? what is stressing him so much that he is doing this?

Does he like coming home? Is that now a reward for him?, that if he gets overloaded and has had enough at school, he knows he can do this and come home?

I had a similar situation, my story...
I was worried about this for my own son, he was also showing violent behaviour at school. I told them that I was worried that by suspending him or sending him home on "unofficial suspensions" it may send the wrong message to him. That even though he can't speak properly, that he can hear what they talk about and he WILL understand why he is being sent home. They said "good", it may help him change his behaviour, I said "but, he wants to be at home". He liked home better, less stress, readily available food and drink, more fun. They would never accept that though, even though his psychologist agreed with me, the school would never accept it. I could understand they have a duty of care for all the children and staff, I just wanted them to admit that sending him home may be part of the problem (even if it was necessary, it was reinforcing his violence). Anyway, sending him home to "reflect on his behaviour" was never going to work! They had to figure out the triggers at school (hunger, certain children he didn't like, tiredness, needing to keep him at a level of engagement that is enough to get work done and keep him interested, but still allowing him to walk away for a wind down when needed and more fun, lots of sensory activities to suit his needs and knowing what was going to happen and when... lots of schedules and visuals to support and explaining to him, even toast when he gets to school (like most boys, he could eat all day, actually he does... stick thin though).
A year on, he is a changed boy. Now he likes school. I would be surprised if the phone rang now and they told me he'd hit someone, he is not that boy anymore. He loves going to school, it is an enjoyable place for him, if he got suspended now he WOULD be upset... crazy how it works.
At the time, the school told me they were already doing everything they could to help my son. Well, once they really started to analyse why he was doing it, they managed to help him in the ways he needed it.

I'm sending you big hugs too, it is devastating when things like this happen and you wonder where did it all go soooooooooo wrong? I'll be praying that your family gets through this setback quickly and stronger for it. That's all I have, encouragement and a story of success and a memory of that heartbreak. BIG BIG BIG hugs for you and your son.



NathansMommy
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25 Oct 2012, 4:11 pm

Yes, the problems are mostly at school. He has a terrible attitude and is defiant when at home and with extended family, but the majority of the violent behavior and cussing is at school. He was sent home again today for ripping the white board off the wall, throwing it at the teacher and cussing incessantly. At school, they have a reward program for him. If he earns so many stars for behaving well or doing work, he gets to pick a prize. Needless to say, he rarely earns prizes. I don't think there is anyone who sits in on the classes to review how the teacher and the aides interact with him. They have told me that they are "not allowed" to discipline the kids in any way, not even time out. So, when Nathan is bad, they spend as much time as possible trying to re-direct his behavior, then ultimately he gets sent home. He would rather be home than at school even though when he gets sent home, everything he enjoys is taken away. He would rather be at home closed in his room with no toys or computer than be at school playing and having fun. The entire school has tried everything they can. They are a small school and are REALLY involved. It is just that nothing at all has yielded any results. I honestly feel the school has given up. They have been very honest and told me outright that when Nathan is starting to become violent, they just get away from him and let him do whatever he wants, probably because they are sick of being bitten, spit at, kicked, pinched or called "f****** b****" and other equally distasteful names. After numerous meetings with the teacher, aides, principal and head of the special ed department for the school district, I am confident in saying that I believe they are doing everything they possibly can, but there is absolutely no result. I think they have given up... I would love to put the blame off on them and say "how dare they", but logically I have no idea what else they could possibly due to better the situation. I don't agree with it, but they have resulted to letting him take 2-3 hour naps while in class because that is what HE wants to do and refuses to do anything else. I can't put him in any other schools. There are no "special" schools where I live. The nearest private school for autistic kids is about 60 miles away and has an annual tuition cost of $20,000, which I can't afford. There is a grant program out here, but the wait is 2 years. Plus, with shuttling him to and from that school, I would have to quit my job, which I am unable to do.

I don't know what to do. I am so depressed. I am only 26 years old and I feel like i've endured enough stress and heartbreak for an entire lifetime. I'm usually such an optimist, but I can't seem to find the light at the end of the tunnel anymore...



zette
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25 Oct 2012, 5:31 pm

You need an advocate and a special education attorney. The lawyer's fees are paid by the school if you win at due process, and the school district has to find a way to educate him, or pay for the private school (and the transportation) to do so. See wrightslaw.com for more info.



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25 Oct 2012, 5:46 pm

You can hold the school personnel accountable for doing their job without necessarily blaming them or thinking "how dare they". While it sounds like they have the best of intentions, it also sounds like they may not have the experience or training they need to make things work for Nathan. They are most likely reinforcing his behaviors by sending him home and its only likely to get worse if they keep doing that. Sticker charts are worse than worthless in this situation and they need to toss that idea out the window. Charts and other "motivational" tools tend to be very counter-productive in these situations because they just create more anxiety and do not provide ANY motivation for a child who is having so much difficulty functioning. They need to dig deeper and find some other tools. If you haven't read it, get Ross Greene's book "Lost at School" and check out his website LivesintheBalance.org.

My son is in first grade and also has mostly refused to participate in most of the classroom activities, though his physical aggression is much less than what you are describing for your son. He cusses too and says mean things to the teachers but we really are not too worried about that aspect unless he says threatening things, which he hasn't. He spent the better part of every day during all of last year and the first 6 weeks of this year in the "space place" because the classroom teacher was unable to get him to do anything and until recently, the school refused to provide an aide. Now (after I got an advocate involved), the school district has brought in a specialist who is very experienced at conducting functional behavior assessments and writing behavior intervention plans. With her involvement, we have taken a careful look at what the settings are when he is most likely to have trouble and what the immediate triggers are for him. The biggest focus has been on preventing episodes while still getting him to participate. They put an aide with him and she began taking data about the challenging behaviors he had, when they occurred, what preceded them, etc. With this type of data, you can get a better look at what is going on. It sounds to me like your school needs to take this type of methodical approach. It is hard to believe that a kiddo that did so well in kindergarten could suddenly do so badly in 1st grade and that there is nothing that can be done about it. Not to "go over anyone's head" but I would suggest that you try contacting your state office in charge of the public school system and find out if there is a specialist available such as a BCBA as zette suggested, or another qualified individual who could bring some new skills to the table. I don't think there is any shame in the school simply not having the skills or expertise to successfully work with a kiddo who is having such a tough time. Hopefully for you and Nathan there is other help out there and the school will be willing to use it if it is there. Good luck!



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25 Oct 2012, 7:09 pm

It sounds to me like the OP's son's life must be AWFUL right now! After all, he is constantly grounded from the computer (and all his toys for that matter!) at home, yet school is worse than home to him for some reason!

How good is the kid at communicating to you what at school sets him off (to the point where being grounded from nigh-everything at home is better than school) or why he turns violent?


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25 Oct 2012, 7:22 pm

Ugh, hugs! So sorry you're going through this.

Sounds like school is terribly difficult for your son, and they either aren't offering, don't have, or don't know the appropriate tools to help him figure out what he's supposed to be doing and how he's supposed to do it.

I agree about an advocate - try finding somebody experienced with autism to come with you to the next meeting you have with the school. For one thing, if you turn into a crying puddle of goo (been there) you will have someone there advocating for your child that still has control over their verbal language. For another, they may be able to see what it is the school needs to do and hold them accountable.

If you can't afford to pay an advocate (a lot of autism service organizations will do school advocacy at about the same rates plus travel) see if you can find a free one.

There's this organization, no idea about how they work, but in case it's useful: http://www.autismtulsa.org/index.cfm?id=84



NathansMommy
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25 Oct 2012, 7:37 pm

We have a Parent-Teacher Conference tomorrow where we are going to try to bring up some of these concerns and I am definitely going to look into other services that I can find, but I have not had much luck with that. I have been online searching "Board Certified Behavior Analysts" in my area, but have had little luck. We are kind of limited in the services for Autistic individuals in my area, but trust me, we have been to just about all we have come across. We have been to the Autism Center which is quite a distance from where we live, but have not been there recently. I'm thinking I need to head back there, too... This is just becoming such a disappointment. I have been going over the list of all of the psychologists, specialists and community programs we have been to, add to that the assistance the school has provided, and the list is staggering. I just thought that us doing virtually every single thing at our disposal would yield some kind of positive results, but it hasn't.

Bombaloo: I agree about the chart thing. They also send home a daily report card broken down hourly in which he gets a "Smile" "Sad Face" or "Crying face" and they have stated as soon as he gets anything other than a Smile, his behavior gets worse. But they are trying to do something to encourage him to do his work (he is literally doing no work at all; he will lay on the floor and take naps and tried to hit anyone who tries to get him to do any type of work at all. So I know they are trying whatever they can to get him excited about school. They have gone so far as to say they will let him write on the teacher's personal Ipad, save the image, and e-mail individual images to the homeroom teacher in lieu of having Nathan write on paper (he hates writing). In a lot of ways I feel like they are in the same boat as me, just trying anything they can to help.

Comp_Geek: His life is FAR from awful, believe me. For a child who is so mean and violent at school and gets his toys and computer taken away as punishment, he is always in high spirits. That is why I said punishment hasn't worked either in my earlier post. He loves the computer and the Kindle and iPad, but take those away from him and he doesn't even seem to care. He will just as happily lay in his bad and talk to the ceiling. We try to tell him "You will not be playing on the computer today because you smacked your teacher and said the "f" word over and over at school today" and he just seems to have this "Oh well" attitude about it. He is a happy child with a super loving home. He has a lot more as far as material possessions and parental love/attention/involvement than a lot of less fortunate children have. My goal is not to make him sad. My goal is to try to make him understand that these behaviors or not acceptable. His communication is lacking quite a bit still. When I ask why he pulled his teacher's hair he will say "I was mad". I ask what made him mad and he says "I got in trouble" I ask what he got in trouble for he says "Because I was mad". It is just a long loop that goes round and round. I am sure there are things that cause him anxiety and set him off that I don't see and the teachers don't realize, but I have also seen Nathan be perfectly wonderful and sweet to me all morning, us singing the "Sid the Science Kid" song in the car on the drive to school and everything be great,. Then I walk him to his classroom give him a kiss and say "I love you" and him suddenly run over to his teacher and slap her while looking right at me. Or there have also been instances where he is perfect and sweet all morning then when I get him to him class he tells me to "Shut up" over and over again. It's like when he gets to school, he suddenly thinks he can do whatever he wants because there are no consequences. There is obviously something he doesn't like about school or the work or whatever it is, so he seems to "intentionally" try to get in trouble so he can come home. I don't know what is going on...



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25 Oct 2012, 10:34 pm

I wonder if a visual punishment system would work. I hear the visual schedule working well, maybe if you had pictures of punnishments.

I def think you need help with the school. If all else fails, an ADA lawyer might help.



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25 Oct 2012, 11:02 pm

NathansMommy wrote:
I am sure there are things that cause him anxiety and set him off that I don't see and the teachers don't realize, but I have also seen Nathan be perfectly wonderful and sweet to me all morning, us singing the "Sid the Science Kid" song in the car on the drive to school and everything be great,. Then I walk him to his classroom give him a kiss and say "I love you" and him suddenly run over to his teacher and slap her while looking right at me. Or there have also been instances where he is perfect and sweet all morning then when I get him to him class he tells me to "Shut up" over and over again. It's like when he gets to school, he suddenly thinks he can do whatever he wants because there are no consequences. There is obviously something he doesn't like about school or the work or whatever it is, so he seems to "intentionally" try to get in trouble so he can come home. I don't know what is going on...

The bolded part is key. He is almost certainly NOT having challenging behavior because there are no consequences. The challenging behavior has a function, as you have surmised it is probably something about school that he doesn't like and is trying to escape. It is also almost certain that the challenging behaviors will not be stopped by finding the right negative consequence that is bad enough that he will be persuaded to change his ways. The challenging behavior can be stopped by figuring out what he is achieving by exhibiting this behavior and modifying the situation to eliminate his need to behave this way to get his needs met. It is critical that the function of his behavior be discovered. Check out this website:
http://www.behavioradvisor.com/FBA.html
This may not be the most fantastic site but it contains a lot of good info. I honestly don't think this situation is a matter of you getting more therapy outside of school. This is about the school conducting a thorough FBA and using the data collected to make some changes to his school experience.
To give an example, my son was refusing to go to reading group. He would lay on the floor or hide in the space place and simply refuse to go. If the teacher tried to force him to go , he would be physically aggressive so she would withdraw the request and he would get to stay in the space place. After many discussions with him and the aide's direct observation, we figured out that the problem was that at reading group the students sat close together at a horseshoe shaped table with the teacher sitting in the middle of the arch. The kids were sometimes asked to share a book. We learned that DS cannot tolerate sitting so closely to the other students. They put a desk for him next to the table and made sure he always had his own materials and now he goes to reading group everyday and stays the entire time.
It can take some serious investigation but it sounds so much like Nathan could get back to doing fine if the staff could just figure out the specifics of what obstacles are standing in his way.