Meeting at School

[Austin's Mom]

My son, Austin, is 10 y.o. He was diagnosed as having autism when he was approx. 6, although he's been receiving services since he was 3.

We had a meeting at school, as Austin's behavior has been terrible. Some days he can be wonderul; other days he has major meltdowns. During these meltdowns, he kicks, hits, pulls hair, bites, etc. It's tough to bring him out of these fits. These started back in November (some at home), but now they are just at school. He just doesn't want to work at school. He has been averaging 1-2 meltdowns per week. I took Austin to the doctor two weeks ago, and the doctor does not want to medicate him. We tried depakote for a few years (he had one major seizure), but he got very ornary after he had been on it for a few years. We tried Concerta, but that made him bonkers! So the doctor doesn't want to try anything new.

We're kind of in a bind because the school even mentioned the local BOCES school, which is strictly for special-needs kids. We really don't want to do that, as he has achieved much during school in a regular classroom. He has a full-time aide, and he is very smart (straight A's on his report card). The special ed. coordinator also mentioned that they have a school psychologist and medical doctor who could take a look at him and talk about some meds that might work. I'm really torn. I'm neither pro nor anti-meds, but of course we'd rather not put him on meds, but something really needs to be done. The behavioral plans both at school and at home just are not working. I'm so worried he's going to hurt another child at school.

He seems to go through these meltdowns every few years. We even wondered if he suffers from SAD, but the doctor doesn't think so, as he is usually very happy, he just has anger episodes at school. BTW, we live in the Northeast (very cold)! He has even mentioned that he hates winter. The principal is letting him wear shorts everyday (with his snowpants over them for the traveling). I enrolled him in a baseball winter clinic, and I also have been taking him swimming indoors.

He is such a wonderful little boy, and I love him dearly. I'm just at my wits' end.

He is currently on Super Nu Thera, EyeQ, Probiotics, DGM.

Any advice you could give would be appreciated.

[peglem]

When my daughter has these meltdowns, she has a strep infection. The meltdowns are the only symptom. So, I'd check for that, even if he doesn't have a sore throat.

[tgrimes]

Well, you have to decide whether you think it's worth it, medicine will do one of several things:
1. eliminate the behaviors
2. minimize them
3. helps with some behaviors but causes new and worse ones
4. no effect
5. side effects

Just my own observation, but I've been reading this board a long time and have not heard anyone claim #1 happened, except in the case of obsessing of fixation behaviors.

If he doesn't want to work, that may be the cause of the agression problems, and if they can't lighten his workload or minimize demands at school the behaviors will continue, medicated or not.

[babyboomer]

Interesting to find/read your post... One of my students (actually I have 2 w/ autism - I teach a SDC for kids w/ moderate - severe disabilities at a gen ed school site) ... well, one of my guys has his own version of a 'meltdown'... The psychologist gave me a chart to (duh!) chart his behaviors (I myself find it more meaningful to write a narrative, because his behaviors - kick, hit - don't occur just at certain times (i.e., transitions)... I know my guy has a VERY hard time w/ changes - he's gotten somewhat better, but still - he doesn't 'roll with the punches'. My other one w/ autism (also has Down syndrome) is VERY 'into' stimming and is absolutely no behavior (to others!) problem...

The second little one takes Risperdol (sp?) ... per family, he has been 'aggressive' (something I absolutely have never even seen a teeny bit of!)... at home w/ siblings. So he takes the meds 3x/day.... And, IMHO, he is SOOOO slow moving - he can spot the mat or anything to lay on, sit on, etc. a mile away - and he lays down - going up the slide, he wants to sit down... I don't know if it is the meds, but he is sooooooo sleepy at times. But there is no aggression (haven't a clue as to what it would look like).

Back to my first one - he's very sensitive to high sounds (I have had some soprano-like vocalizers - and he would really get upset when they screamed) ... I'm trying to get him to understand that he can go to the rocking chair to 'chill out' but he doesn't yet understand that.

Do you think the teacher and psych have considered all (!!!) the many sounds, actions, etc., that may provoke a 'melt down'?.know about going to a safe place (wherever it is in the room) to calm himself down?

It sounds like he's verbal (straight A's) ...

IMHO, as a sped teacher and former gen ed teacher (33 years and counting!), I think the ONLY kids that 'should' be at a 'special site' are the ones w/ fragile medical conditions in need of close medical supervision - or kids who are big-time runners (school yards are not necessarily closed off as they need to be for some kids) - or kids who have had a history of unprovoked aggression that no one has been able to control. Period. And everyone else - EVERYONE - should be at a gen ed school site. (One of my former students - has severe CP - is now at a 'special school' site ... and he was doing just fine at the gen ed site two years ago!) IMHO, once a kid is sent to that 'special site' it may take moving heaven and earth to get him/her back to the gen ed site.

My first guy w/ autism had a rather challenging first day in music class (w/ the second grade at school)... but once he knew the routine, he's done very well. He still vocalizes at times, but he sure is attentive and happy!

So - keep that kid in gen ed, ... get more info re: meds (OK - another one - has Down syndrome - is on Ritalin - comes in very low key and as it wears off... she speeds up and by 1:00, she's definately a character!) ... and see if there are some stones left unturned re: finding ideas re: meltdowns. Maybe do a google "autism behavior" - check on amazon.com - I know U of NC/Chapel Hill has TEACCH and behavior stuff ...

Take care!

[megansmom]

Well this sounds almost just like Megan at school and home... a couple days a week she may try to bite her aide and sometimes hit Daddy. She is non-cooperative at school on those days. We are unable to determine why as well and the help that we get with her behavors (which isn't much lately) isn't working at all, as a matter of fact these behaviors are getting worse. She is constantly fighting with her sister, talks back all the time and refuses to appologize for her actions. She is taking Topamax sprinkles now for her seizures, she has been on this for about 8 months or so. (this is her 5th seizure medicine, and they still are not under control) I'm sorry I don't have very many ideas for you. I can say that when she acts up at school they take away her favorite things, like playing in the playground and computer lab. When she acts up or has fits at school she usually calms down because she so hates to lose her fun/free time at school.

Good luck with this, we are still trying to figure this out too.

Tracy

[Austin's Mom]

Thank you all for your replies. We had another issue today (after a fantastic day yesterday). He got up and wouldn't go to school. He absolutely refused, saying he loves his home and school is boring. After much fretting, talking, yelling, etc., my husband and I just sat back and told him he could stay home from school but there would be no games, no toys, and no tv. We wanted him to understand that when he's not doing his job (school), that doesn't allow him to have fun. Well, that worked! We took him to school and had a 3-hour meeting with the school psychologist. She was wonderful. She said she wants to try social stories with him and a different behavioral plan. She said while meds is a possibility, she wants to try working with him first. She also agreed that his teacher has not been very accommodating when it comes to structure, and that is also a problem with Austin. I'm just hoping and praying he will turn it around soon. Thanks again for your replies.

[Mother's Heart]

well, I started to post the other day but didn't. Now that he said school is boring I'm going to.

Often my son's meltdowns arise when we try to make him do some work that is too easy/boring/'stupid' for him. For example, I tried to review some math concepts to be sure we didn't have gaps and he flipped out because "I already know all about that". another example: The other day he and I each got a nicely banged up face because the story I was expecting him to read and analyze was, in his words, "stupid, there are many stories out there that are about real things and I like them better" It was a painful way for me to recognize he likes non-fiction and realistic fiction better. I certainly know now. OUCH! But, unlike other times when I don't have a clue what is sending him off the deep end, I was able to talk over his screaming and hitting and explain that the type of book we used for the lesson was optional...the polnt was to have something to read to base the literary analysis on and it could be 'real'. We then proceeded to pull a variety of non-fiction and realistic fiction books off the shelf and consider each one, select one and discuss how it was necessary to read a couple of chapters before deciding if he liked it or not. He cooperated SO well with that it was amazing. After reading two chapters of the book he had chosen he requested to read a different one we had looked at because the first one "wasn't very interesting". The second book we read several chapters then quit because the day was done. :) So, all it took to circumvent that particular meltdown was treating him with respect, talking to him ahead of time so he knew what to expect and what was expected of him, and giving him some choices.

I wonder if your son was consulted more, explained to more, given higher expectations, and perhaps more control of the situation (without being allowed to opt out of necessary components) if he wouldn't find a way to deal with some of it better on his own.

A thing we did with the books when he couldn't choose which book to read was to give him say-so in if he held the book or I did, or if I read it outloud with him or he read it himself, where we read etc. He also needed a way to tell me he needed a break for me to let him up from the reading. that type of thing. It's so easy to forget to talk to our kids...all the time we are demanding this and that and never asking or explaining or giving them credit for understanding what's going on.

Anyway..this of course doesn't address all triggers for meltdowns by any means...but perhaps if part of it is he is not being challenged enough at school it might help some. Some meltdowns are 'just meltdowns', but all behaviour is communication.

I would try challenging him more, more variety, more structure (making expectations clear) and more personal 'control'.

The other thing that I thought about the other day was environmental issues. Perhaps he is having a hard time when he is having trouble filtering out stim. Maybe it builds up until he can't handle it any more, overwhelms and bursts out of him. My son has pointed out to me that I am speaking too loudly for inside the house during lessons and that is why he is going berserk, it hurts his head. He threw a puzzle yesterday repeatedly and when asked what happened, he said he got tired of listening to me make so many 'suuu' sounds that hurt his head.
I was talking under my breath (reading to myself )at the computer about a search I was doing for an 'sh" name. (I guess I move my lips when I read ;) )

anyway.....if he's in a regular classroom maybe it's just that some days the teacher talks too loudly or the background 'noise' is too much.
sounds, lights, movement, clutter, motors running, temperature, echo's, smells, etc.
My son says various things make an intolerable 'woo' sound. (sister's voice my voice, washing machine, air conditioner, t.v. etc) while he doesn't seem to mind light or glare. My DD can't tolerate certain lights.

If he is verbal, have you tried asking him directly what is happening? My son actually told me that he thought I should pick up the food he threw (when I ranted and told him he WAS going to pick that up). When I asked him why he thought I should be the one to pick up what he threw his response was that *I* had helped him make the mess....by talking too loud and I was just as responsible for it. sigh. his point of view is different from mine.

[Mother's Heart]

Does the general ed teacher flex the structure a lot? not following a set routine? tHat can be hard in a reg classroom and tough for an asd kid to adapt to.

It's good to hear the psych wants to work with him, doing social stories and trying different approaches.

me DS and I even sat down and brainstormed together, analysing WHAT happens that ends up in things being thrown (usually it's a food mess that sends ME into a meltdown:rolleyes: ) He was able to verbalize what triggered it, what feelings were behind it, what would be a better approach and make a list of what we need to do when the frustration arises, and a list of ways to calm down before taking action.

We didn't make it just about him...actually we made if mostly about me (after all, I'm not perfect in my responses to the stress either) Perhaps your son would be able to participate in creating the social stories?


(just so you know, I'm not sure you've been around here very long, my son is 14 yrs old and was 'non-verbal' until this past year, when we found a way for him to communicate in writing. All of this verbal interaction is 'new' for us. Our relationship is rapidly evolving with the growth of this ability to communicate, and he is growing too. )

[Mother's Heart]

Everytime I get to middle of posting I can't remember this question that I want to ask?

Do you think that perhaps part of the reason he hates winter is the lack of physical activity 'gets to him'?
I wonder if you could plan a break in his school day for some exercise? Some sensory input time?
(those alternate day meltdowns don't happen to occur on the days he doesnt' have PE class, do they?)

[rbear4]

Austin's mom,

Your son sounds a lot like my 10yo ds (will be 11 next week). A supportive school program has really helped him alot. He is in an SDC classroom but now with the right supports he is mainstreamed for 2/3rds of his day. Not for the whole day because it is just too stressful and then he starts the meltdowns again.

We started a great new plan with him called a 5 point scale. I got the idea from the book "THe incredible 5 point scale". It is for sale at amazon for like $15 and works wonders for my ds. We are also increasing his sensory diet at school and made some changes to his behavior plan. It is definitely working for him but was a long road.

We are now in the process of figuring out what to do with him for Middle school and actually our best choice is a special needs school. The one we are looking at is almost exclusively more verbal autistic spectrum children who can't quite handle mainstream school. It is killing me to put him in a completely segregated school but a regular middle school will kill him.

I took DS to the special school for a tour and he is in love. He can't wait to go there. It is a very safe feeling place. Your BOCES program doesn't sound similar to that but maybe there is a way to be creative.

[Austin's Mom]

Wow. Mother's Heart - you are so wise. So much of you said was what the school psychologist said. One of the biggest things for Austin is CONTROL. We need to give him some control, as he feels like he has totally lost control when we are all demanding him to do something.

As far as physical activity in the winter, I think he really gets enough, it's just he can't do it outside. I enrolled him in a winter baseball clinic, take him swimming, and the school takes him to the fitness room. He just really hates the cold. In fact, sometimes he says the cold hurts him.

The school has removed him from the classroom for the time-being, and he is working one-on-one with the resource room teacher and his aide. This provides him the structure that he needs, and it makes us more comfortable knowing he won't hurt another child. This is just for now, just until we get his behavior under control. He still goes to all his specials (library, gym, etc.) with his class and has lunch and recess with them. He seems to like the social stories the psychologist has developed.

He is very verbal. Sometimes he will tell us what he is angry about, but sometimes he will say something off-the-wall like "Mr. X poured peanut butter on my head." He usually says this off-the-wall stuff only when he is angry.

The school is letting him wear shorts in school, and they are really trying to help him in other ways. He will tell them when he needs a break, and they will take him into the fitness room (supposed to be only for staff) and let him bike or bounce on the exercise ball. This helps him calm down. They also have a room for him that they put a beanbag chair in where he can listen to books on tape or music and just relax. One of his favorite things is working on the computer, so they have incorporated some of his schoolwork into the computer. The only complaint I have is about his teacher. He doesn't seem to understand special needs and doesn't seem to want to understand!

One more thing the psychologist stressed is that we can't personalize this. He may tell me he hates me, but he's just lashing out. We also have to try to learn that this isn't our fault. I tend to get all depressed about his behaviors, but she said this is his problem. We are all here doing what we can to help him, and we will always do that. But it is not our fault he lashes out and hits others. Other people don't understand why I don't just "discipline" the kid more. Well, I guess we'll always have some people like that around, but I can't let them bother me anymore. My son is the light of my life, and even though there are difficult days/months, the good far outweighs the bad. I/we have been blessed by having this child in our lives, as he has taught us so much, especially the meaning of happiness.

[peglem]

Don't you love it when you get a professional who understands and actually helps, like the psychologist? The only thing I wanted to add is that when he gets reintroduced to the regular classroom, why not try a different teacher? Seems like you've got enough to deal with, without adding modifying teacher behavior to your list- this is probably harder than modifying your son's behavior!

[Austin's Mom]

We actually asked the psychologist about that - how are we going to put him back in that classroom when the teacher doesn't understand him? Keep in mind, however, that Austin LOVES the teacher. She said she will think about that when the time comes. She's afraid that if we move him to another class, he may feel as though he has done something wrong. He also has two very close friends in that class. So I'm not sure what we'll do. Additionally, the principal is dead set against him changing classrooms. She only says that she's done it before, and it was disastrous. Might actually be good for Austin. I think she might have to reconsider.

[AKF]

Hopefully the psychologist will be able to teach him better ways to react than hitting others. I'm not trying to scare you, but it is vital that his reaction of hitting others be stopped before he gets too much bigger. My son is 19, and we've been blessed that he's never been agressive. I can't imagine him being the size he is now and having to worry about him hitting me or someone else. It does sound like the psychologist is really wonderful. It must be great to have somebody that really knows what's going on.

[Mother's Heart]

I heartily second AKF's motion. Not only is it vital to address the aggression now before he's older and bigger, it is also VERY important to nip it in bud now, before it has a chance to become an ingrained behaviour. (eta:and evolve into more)
Believe me, I've got a 6'tall lad with an impulsve reaction to sounds and his reactions are generally 1) hit self, 2)hit somebody else, 3)throw something.
All three behaviours are REALLY hard to live with and really hard for him to control now.

You want to change it
--before that response becomes habitual,
--before he is big enough to hurt others, or himself,
--and thirdly, before it impacts his adult placement.

This is the type of thing that will limit his level of independence as an adult because he will not be able to take advantage of many programs/living situations if his behaviour is physically aggressive. He can get by without the academics, but he will have a far tougher time if he has to work around being an aggressive and difficult to manage adult male.

This is also the type of thing that could conceivably force you into either moving him out from your home at a younger age than you might wish or medicating him in order to keep him there...or somewhere else. Not a great outcome.

I suggest you muster up all the hope and determination you can to work through this issue for him.

~~~~~~~~~~~
A word to the wise from the voice of experience.


~~~~~~~~~~~

[Mother's Heart]

Thanks for the compliment, but I think whatever wisdom I've got has come from years of experience and observation.

about the control....I wish I could also figure out the ways to integrate both control and responsibility into the picture. MOST of my son's aggression arises from his helplessness and the constant intrusive demands on him. There's no escaping it for an autistic kid. from remaining safe, fitting in, following everybody else's pace, not having a way to communicate, being unable to do for yourself...it hits from every imaginable angle.

But I'm also hearing my son say that he isn't worth anything because he's got autism. I think if I'd given him both a way to communicate his side of the struggle AND given him more responsibility for his actions and more responsibility for his life, then he might know that he also deserves respect for who he is., that he has value.

just more thoughts to chew on.

[Mother's Heart]

pouring peanut butter comment: :)

my DS will make off the wall comments when he is sick of being pushed to provide information, and he thinks we want to know badly,) He's feeling out of control by being pressured so much, or so many times and sees the opportunity to get back in that feeling of control...so he likes to make us wait for the real news, and even will say so. "I just like being the one in control so I'm going to talk about other nonsense for a long time before I tell you what I want to order from the menu. That way I'm boss." :rolleyes: little stink. I'm finding that I can circumvent this by reminding him I'm still mom and setting a time limit and saying I'm ordering at such and so time. That's 'x' minutes from now. If you haven't told me what you want by 'x' minutes from now then I won't be ordering anything for you at all.Then I turn my attention to somebody/something else and wait. I generally get the order at 'x-30secs' (it's just like algebra ;) ) If I need him to eat then I say I will order for you and you won't have any control over what I order....but that approach still gives him something he likes to eat, therefore acceptable control in his mind by not telling me what he wants. it doesn't work as well as being able to say he will get nothing. You always gotta be willing to follow up on whatever plan you offer.

Sometimes it really seems like he can't give a relevant response...but I'm beginning to doubt all of that now....having seen how clever he is and how much MORE he understands about interactions than we ever realized before.

[Mother's Heart]

edit: boy! THIS sounded silly. That's cuz I intended to post it on another thread. I need a shrug shoulders emoticon here. I wondered where that reply went. goodnight.

[Laura P]

WE had been trying to attack Sierra's behaviors (SIB, aggression, etc.) in tandem with intensive behavioral intervention and with medication (Risperdal). It wasn't until we finally found a good therapeutic dose that she became in any way able to handle her own behaviors (which are primarily communicative in nature, but still...). We have the charts to prove it too.

I hate medicating my child too, but the absence of the medication wasn't teaching her anything--she couldn't concentrate or control behavior sufficiently without it to be able to function, she wasn't sleeping, we weren't sleeping, etc. It has truly been a great thing for her--she has an appetite now, but hjer weight is normal, and there hasn't been any evidence of a lowered seizure threshold, so the potential side effects haven't been demonstrated in her (or at least, not yet).

It is my hope that we can slowly, once we are seeing improvements in communication and self-regulation, reduce the risperdal. I don't think we would be where we are now if we hadn't gone with it. I also think you have to evaluate it on a case-by-case basis and see if it is working for your child.

Good luck!

[Austin's Mom]

Thanks, Laura P. Risperadol has been suggested to me. I have read so much on it, and it really scares me. However, we're at a point where he doesn't seem to be functioning well when he has to do something he doesn't want to do. He had a situation yesterday. He had to be at baseball practice at 3:30, and it was a little after 3:00, so I told him he had to stop his video. You could tell he was ticked off, but nothing full-blown at that time. We got to baseball, and all he wanted to do was dance on the turf. So we took him away, put his coat on, and led him outside. He kept saying, "give me one more chance." Well, at that point, we had given him too many chances, so he ended up having a meltdown, but it was a bit milder than in the past. He kicked his dad and tried to bite him, but that was about it. We had to bend his legs to get him in the car. Then he just cried and tried to reason with us, but we just kept driving. He lost out on his baseball and swimming afterwards. It does, however, appear that his meltdowns are milder, and he seems to be coming out of them quicker. He has a week left of school, then he's out for a full week. I worry about him going back to school after that week.

Back to the risperadol, what do you have to watch for in side affects? He has had one major seizure (back in 2001) for which he was on Depakote for a few years. Now he's on nothing but his vitamins.

[Laura P]

Risperdal has a few side effects--one is that, in some kids, it can lower the seizure threshold. However, we haven't seen that at all in Sierra. She has never had a seizure, either before or after risperdal.

The other one, which can be quite a problem, is that Risperdal has a stimulatory effect on the appetite. Weight gain can be significant (30-40 lbs in a couple of months). Again, we've been fortunate--Sierra was very skinny before Risperdal and ate next to nothing, jsut a few foods. After risperdal, her appetite increased (we do have to watch it), but the side effect was that we were able to introduce a lot of healthy foods because she literally would have eaten paper at the beginning of treatment, she was so hungry. Now, she eats a LOT of veggies, especially raw. We focus on high-fiber foods, whole grains, raw veggies and fruit, and LOTS of water at every meal. She loves carbs, so we have to watch that a bit (me too!). She also loves spicy foods now, so it has made my life easier, in that I don't hve to make a separate dinner for her.

Finally, it is also given to help with sleep. If that is an issue for you guys, it is a real godsend to everyone to get a good night's sleep. WE went 4 years without it, and have now had almost a year of good sleep, thanks to a combination of meds and behavioral intervention. and I think I would literally be dead now if we hadn't gottne that under control.

The psychiatrist (and you really need a good doc who has medication management expertise to prescribe ripserdal--it is an antipsychotic, which is a scary name for something you give you child) will start slowly with introducing it. This is smart, as frequently a small amount makes a big difference. This is not a drug to give for an occasional outburst. It needs to be given at a sufficiently high dose to provide a therapeutic level that can be maintained in the bloodstream. Sierra weighs about 80 lbs (she is 4'10" and will be 12 in April), and gets 2.75 mg daily--1 mg each in the a.m. and at bedtime, then 0.75 mg at noon, so it's not a large amount. Kind of moderate. But it works for her, and she's gotten a great benefit from it, without the negative side effects.

If you want more information about our personal experience, I'm more than happy to help. WE were scared to death about it when we first went down this road 2 years ago, but it really has worked well for us.

[Austin's Mom]

The weight gain would definitely be worrisome. He is 10 years old, and he weighs approx. 87 lbs. (and growing)! He is a very picky eater, but he eats a lot of what he likes (pizza, chicken, cheese sticks, etc.). I would LOVE to see him eat veggies; I just don't see that happening.

He has always been a great sleeper. He goes to bed usually around 9:30, and he wakes up anywhere from 6:00-7:00 a.m.

Is risperadol the drug of choice, or might the dr. try something else first?

[peglem]

Austin's mom, I pm'd you.

[Laura P]

Risperdal is the one they like to use first. It has fewer side effects and requires less frequent blood draws, which are traditionally hard on kids with autism. Sierra handles sticks better than I do so that's less of a problem for her, but it wasn't always the case...

Getting veggies into kids is a whole 'nother ball of wax. I'll start a new thread on this.