Autism Spectrum and Meltdowns

Discussion in 'General Parenting' started by WearyWoman, Jul 2, 2010.

  1. WearyWoman

    WearyWoman Guest

    Hi everyone,

    I used to visit this forum quite frequently, and now I'm back - years later making another "first post". Yes, it's been a bad day - a bad week, actually.

    Our youngest boy (age 9) has an autism spectrum disorder (Pervasive Developmental Disorder (PDD)/not otherwise specified), ADHD, apraxia of speech, and ODD-like behaviors as well. He is relatively high functioning in that he attends school full-time (entering third grade this fall). With changes in the insurance laws in Wisconsin, we are now eligible to get in-home therapy for his autism. Therapists are here 20 hours per week to work with him.

    Well, it's been a few months now, and the honeymoon is over. At some point during the therapy, he will simply refuse to do the simplest thing, i.e. putting a toy away, at which point he'lll run away, yell, scream and avoid. This behavior has escalated, and he is now throwing any object he can get his hands on at me and the therapists. He punches, kicks, hits, etc. And these meltdowns are resulting from having to switch gears, do the next thing, etc. Being told "no" and general attempts to have him complete tasks also bring on the meltdowns. The therapists are using a visual schedule, and difficult child is verbal.

    Yesterday was the worst, and he truly could have hurt somebody or himself, and I don't even want to talk about the damage he did to his furniture and woodwork in the house, etc. These rage fits go on for over an hour. Afterward, he is sorry and upset with himself.

    I've read the Explosive Child stuff, and it fits him perfectly. I understand his problem pretty well, but I'm still not sure how to deal with it. The book mentions helping the child calm down. Well, this is much easier said than done, as nothing is helping him calm down. He does not want to be talked to or touched, and forget reasoning. He is not learning from his previous behavior very well at all.

    I've noticed the rages often happen mid-day. The morning usually goes quite well, with his Focalin XR. The afternoons are another story. I'm wondering if the medication could be causing a rebounding effect.

    Honestly, I don't think I can keep on enduring things the way they are. Something needs to change. Our life is consumed with this on a daily basis. I know others who have children with autism who aren't so disruptive and aggressive. And, I'm scared.

    difficult child's birthmom said she did not use drugs or alcohol during pregnancy, but that she did smoke for the first few months. Also, we don't have any info at all on bio father. I pray there is nothing else wrong with difficult child than what we already know.

    difficult child has had a neurodevelopmental assessment at a Children's Hospital. He's been evaluated by a number of autism specialists and the school. The hospital team diagnosed him with apraxia of speech and ADHD, and the autism spectrum disorder followed through the autism specialists.

    Is there anything else we can do for difficult child? I'm depressed I think, because I want to help him so much, and yet, nothing is really working very well. Not knowing what to do for my son is very painful. I want our home to be peaceful and joy-filled. And I know you all understand this.

    If anyone can offer any advice or support in the way of autism-spectrum behavior issues, please chime in.

    Thanks for listening,

  2. Marguerite

    Marguerite Active Member

    You can get rebound with medications. Or it could be something else about his daytime routine. Maybe he's been concentrating for long enough and can't cope any more for the day. Maybe he's hungry. Maybe...

    There are multiple steps to helping him. It's better to prevent a meltdown, than to have to calm him afterwards. If you can recognise the early signs and change whatever is beginning to upset him then you're all better off. Also if you can work with him while he is calm to plan ahead how to perhaps handle this. Maybe ask him what it is that he feels before the meltdown begins, why he feels he has to react that way. Then see if there is an alternative you can both plan for. For example, if he's not coping, if there is somewhere he can go instead to sit down quietly. Practice it with him while he is calm. "OK, today if you begin to feel too upset, you can get up, walk over here and sit down quietly. we will stop asking you to do X if you do this, because we will see it is your way of saying, 'I need a break'. So let's practice walking over there now..."

    This info is also in the book, as well as some good examples.

  3. WearyWoman

    WearyWoman Guest

    Hi Marg,

    You make a great point about recognizing the meltdowns coming on and preventing them. I could tell before the most recent meltdown that things were headed that way. But the therapists were here, and they believe he needs to be held accountable and not "let off the hook" so to speak. He does have a "take a break" card that he can use any time, and he had already used that. He has an EXTREMELY hard time following directions in general, so that's why the therapists are focusing on some simple tasks for him to follow directions. Probably 80% of the time, he just won't do the things he's asked, like getting dressed, brushing his teeth, picking up his toys, stopping an activity to do something else, etc. And the backtalk/sassiness is really hard to handle too. He gets a lot of free time when they're hear, during which he can play things of his choice. Everything is included on the visual schedule, so he knows what to expect. We've been told that it "may be this way for a while" until he learns he needs to follow instructions.

    But again, the meltdowns are off the charts, very destructive physically and emotionally.

    Do you think he should get out of his therapy instructions if he's got a meltdown brewing? I want him to better function in life, which includes daily responsibilities, like getting dressed, picking up his toys, etc., yet these meltdowns over everything are the worst! Is this really the price that has to be paid to get him to do what he is asked?

  4. If by therapists, are you talking about ABA trained trainers? If so, I would request that they have their supervising BCBA review their data and develop a FBA and BIP. Something about the training is setting him, possibly task avoidance or attention seeking. Anyway, I believe that it is their issue to work on and they should possess the ability to address it.
  5. WearyWoman

    WearyWoman Guest

    alongfortheride - Thanks, and yes, I am referring to ABA therapy, although the therapy goes beyond that and is more flexible than pure ABA. I'm not familiar with all of the acronyms you mentioned, except I do know about an FBA (functional behavior assessment). Our therapists are all relatively new and inexperienced. This is a big concern for us. Initially, they may have thought our difficult child would be an "easy" case, compared to some kids they work with who are more noticably affected by autism. However, our difficult child has serious behavior issues, and now they're seeing that more clearly.

    I will do absolutely anything to help our son, but I just don't feel confident about any direction right now. On the one hand, he needs to learn to follow a schedule and to have expectations placed on him, but on the other, the meltdowns indicate a huge obstacle for him.

    Over the past week, we've experienced three or four days with the therapists that have resulted in serious meltdowns. One left yesterday in tears, and I won't be surprised if she doesn't return. I don't blame her.

    We need help, and I'm so disappointed in the resources available to families in this situation. We feel like we're the only family on the planet going through this, but I'm sure that's not the case.

    If things don't improve soon, we'll have no choice but to seek more supervision and involvement of people at higher levels in the therapy organization.

    Can you clarify what the other acronyms mean that you mentioned?


  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I have a spectrum son. They get frustrated very easily and do not transition well, therefore it is necessary to change our expectations that they will ever be able to transition without a lot of gentle warning in advance or do things new ways because that really throws them. YOu can not discipline them the way you do "typical" kids because they don't think like typical kids. I totally don't believe that autistic kids seek attention from strangers. They are extremely shy. They GET attention because of thehir atypical behavior, but they hate when all eyes are on them.
    Is your son getting specific Pervasive Developmental Disorder (PDD) interventions in school and in the community? I don't mean therapy, which usually works poorly with Autism Spectrum Disorders (ASD) kids because they do not read or relate to others well. I mean social skills training, perhaps a smaller group in school (they have very low sensory tolerance and a big class often distracts them), sensory intervenions, things like that? If not, he is not getting autistim interventions and all Autism Spectrum Disorders (ASD) kids could use them. My son is actually very verbal, but he is now almost seventeen and still has quirks and differences. If he had not had interventions it would have been far worse. Many Autism Spectrum Disorders (ASD) kids can express themselves so well in writing (often on a keyboard since many have trouble with handwriting). Yet they can't say how they feel which frustrates them and brings on rages. This is way different than ODD.
    Does he have any contact with k ids who are like he is? My son is in Special Olympics and spent many years in a Special Education class where he really did well. He learned quickly and was taught by his aide how to take notes and did a lot of 1-1, which these kids often need. Now he is on his own and making the honor roll. He is still very shy...painfully shy...with people he doesn't know, but feels very comfortable and has friends in his school setting (many are typical kids). When he gets a job it will have to be carefully hand picked because he needs stability, routine, and to see the same people every day. Because of his age we are working with a transition-to-adulthood team next year.
    I think my biggest piece of advice is not to treat him as if he is "bad" or "defiant" but to address his disability and model your parenting to fit his needs. That will make it easier on all of you. Not all Autism Spectrum Disorders (ASD) kids function at the same level. Some are more impaired than others. Not being able to talk is a big impairment. That has GOT to uber-frustrate him. It's good he's learning ways to compensate.
    Take care and good luck, whatever you decide to do. by the way, I also live in Wisconsin. My son goes to Nekoosa High School, if you know where that is. Maybe we're in the same area. If so, PM me. I may be able to help.
  7. susiestar

    susiestar Roll With It

    It sounds like your therapists are not experienced enough to handle the situation. I would push for more experienced therapists and more training for the ones you have. Many autistic people have extreme difficulty with transitions and with being flexible. So their tdocs MUST be more flexible than they are. They also have to admit when what they are doing isn't working and step back to assess the situation and find a new path to their goal.

    If his medications are the problem, and they might be, can you add a dose of a short acting stimulant in the afternoon? Many of us have found that it makes the afternoon and evening MUCH better. What does your child's psychiatrist say about this?

    Have you kept a diary of the meltdowns? It may help you see a pattern which you can then address.

    Dr. Douglas Riley has a fairly new book called "What Your Explosive Child is Trying to Tell You" that might be a big help. If you can figure out the why behind the meltdowns you can often find ways to get the task done with-o the meltdown.

  8. JJJ

    JJJ Active Member

    Have you tried a gluten-free, casein-free diet?
  9. WearyWoman

    WearyWoman Guest

    Midwest Mom - Thanks so much for your reply. I'm sure with your experience, that you totally understand the special challenges of Autism Spectrum Disorders (ASD) kids. I do understand more now than ever (thanks to endless reading, seminars, and research) a whole lot more about autism and how typical parenting does NOT work for autism spectrum disorders. I believe our difficult child has a lot of trouble shifting from his agenda to anyone else's and definitely don't see his behavior as attention seeking. He hates attention and often yells at people, "Don't look at me!!!". You bring up a good point about the writing stuff. The therapists do ask him to write, which he hates, along with drawing and reading (although he can read quite well). Maybe instead of drawing, he could be allowed to use a computer to type instead. He does like technology. This could reduce frustration surrounding those tasks. difficult child was not very verbal until after age 5 - 6. Now, other than for difficulty understanding him due to his apraxia, he talks and communicates very well. So his frustration has reduced surrounding that. Yet, for years, earlier in his life, screaming and physically reacting were a primary form of communication for him, along with hand signals. We are very happy with his speech/communication progress. Oh, I sure wish I lived in your area - we live in northeastern Wi. It sounds like your son is doing so well.

    Susie - Yes, you're right about therapists needing to be prepared and trained. They seem really taken back by difficult child's behavior, but this has been our reality for almost a decade now. It seems like difficult child is way beyond what is typically seen even if autistic kids, from the therapists' perspectives. I'm torn as to whether we just need to stick with this or whether a change needs to happen with the therapy. I have a lot of fear about the future. difficult child does take short-acting stimulants in the afternoon, however, we're now considering discontinuing them since his aggression seems worse both between his XR and first short-acting dose as well as while on the short-acting types. We've tried many different combinations and brands. Focalin XR works by far the best while it is working. But as it leaves his system, Wow! I'm not sure the price to pay is worth it. We're considering trying Clonidine during the afternoon time. These are powerful medications, and I do worry about all of the chemicals. I have checked out D. Riley's book, and I will likely buy it. Thanks so much!

    JJJ - We have not chosen to do the gluten-free, casein-free diet, because we believe that at this point (difficult child is 9), it would be an extreme added stressor on him and the rest of the family, with no guarantee of success. It is a very restricted diet, and at the most recent conference we attended, many parents had tried it for extended periods and claimed it did not work, but only added a lot of stress to an already stressful situation. He does have a healthy diet - lots of fruits and vegetables, and whole grains too. Temple Grandin spoke at a recent autism conference and stated the diet appears to be helpful only about 10% of the time. A neuroscientist devoted to researching brain differences in Autism Spectrum Disorders (ASD) also stated that diet and immunizations are not factors in autism. I know a lot of people disagree and believe gluten-free, casein-free is the answer, but we're just not at that point yet. There's just not enough scientific evidence out there to persuade me to try it.
  10. TerryJ2

    TerryJ2 Well-Known Member

    I totally don't believe that autistic kids seek attention from strangers. They are extremely shy. They GET attention because of thehir atypical behavior, but they hate when all eyes are on them.

    I totally agree.
    I think something is setting him off, maybe a combination of the drug wearing off with-a rebound, and task avoidance. You said he has a hard time following instructions ... maybe they're giving him too much at once? My son is 13, and still has problems picking up his room. If I even use the phrase "pick up your room" he'll get angry. So I'll say, "B4 you can play your video game (or whatever), please take all those dirty clothes off your floor and throw them in the laundry."
    He gets that part. ;)
    Also, maybe he's working on task too long? You said he gets to take breaks, hmm... maybe he wants to continue with-his current task, like playing, etc. and it's that transition that is doing it. I'd have to see him to figure it out.
    He sounds a lot like my son.
    We've never used at-home therapists but we've had a lot of tutors.
    I would definitely take all dyes out of his diet, at least at home. Same with-girlfriend diet. You don't have to make a big deal out of it. I know you said it was a stressor to change his diet, but remember that things always get worse b4 they get better. Just don't buy any more wheat bread for example. Don't buy any more regular flour. Find rice flour and bean flours at the health food store and make choc chip cookies. You don't have to tell him what you're doing. There's no stressor if he doesn't know it. ;) Know what I mean??
    Start cooking with-more rice and potatoes and no deep fried chicken. If your son asks what's going on, tell him you got a new cookbook and you're excited about it. Pull out an old cookbook he hasn't see b4.
    Be sure to put something on this plate that he's used to for every single meal. He must have at least one comfort food that he's used to. He sounds pretty fragile.

    If it helps at all, my son's room is trashed. I have not fixed it for yrs. Originally, I hired someone to put up cloud wallpaper, and I handpainted the dresser and clock with-beach scenes of both kids. Now most of the knobs are broken off of the dresser, the clock is broken, there are holes kicked in the walls, and Magic Marker and pen graffiti all over (some football, some wrestling expressions). I went through a severe grieving process when I decided to quit fixing up his room. I had all these fantasies of what it would look like.
    But I had to console myself with-my daugher's room, which was fine, since she loves art and changes her mind every 6 mo's, LOL! She's got 2-tone pink stripes and polka dots very much like Victoria's Secret.

    You're in good company!
  11. WW,

    I'm sending lots of hugs your way. Your difficult child sounds very much like our difficult child at that age. Nine was a very, very hard year for us. I honestly don't believe that our difficult child would have been able to tolerate that level of therapy at that age... just a thought. Your mention that the therapists are young and inexperienced really gives me pause. There is no question that you want difficult child to be able to take care of his ADL's and follow directions - but I do think that someone who has some experience under their belt with these types of kids knows when to push and when to let up. Our difficult child would get into huge power struggles with rigid type adults at this age. Interestingly his worst power struggle was with a teacher who I was convinced is on the spectrum himself - and he was terribly rigid. He (the teacher) was disciplined after he sent me an email complaining that difficult child was such a total airhead. Those were his exact words! The problems with difficult child weren't nearly at bad at home, because we had gotten better at "reading the signals".

    Our difficult child didn't receive his diagnosis until he was 16, so we muddled along without any special treatment. However, the situation that you are describing would have been most difficult for him - because he did (and does) need some space. Could you possibly have a staffing with the treatment team and discuss your concerns? Maybe they can back off a little, cut down on therapy hours, and engage difficult child regarding his thoughts a little more. Rebound is a very real thing, and the prescribing doctor may need to be in the loop as well.

    by the way, our difficult child is doing very well right now. He isn't , and will never be, a social animal. But he is fairly happy, a successful student, and is working at a job this summer. There is hope, and light at the end of the tunnel. Your difficult child's goals might not be exactly the same of those of those who are treating him - but as you said , they are young and inexperienced. I hope that your difficult child can teach them some things, so that they will perform better in their future work with individuals on the spectrum!

  12. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Just to give you some support, I dont' believe in the GFGC diet either. I belong to a group of parents who have Autism Spectrum Disorders (ASD) kids AND the kids also show up (you've never seen so many kids NOT interact in your The ones on the diet and off the diet are interchangeable. The ones whose parents kill themselves forcing the diet on kids who are old enough to sneak, just cause more meltdowns, and their kids are no more functional than the kids who eat what they like so I decided it's not worth it...they won't follow any diet into adulthood anyway. JMO. My son is also medication free and seems better off of medications than on them, but every Autism Spectrum Disorders (ASD) child is different. I heard that about 50% are on some medication.

    My son did not speak until he was four and a half. He repeated words We would say, "L., where's your coat?" and he'd say "coat." Or we'd say "What's your name?" and he'd say "name" although he knew his name and responded to it. This is often how Autism Spectrum Disorders (ASD) kids learn how to speak, unless they have Aspergers. My son was dxd. with Pervasive Developmental Disorder (PDD)-not otherwise specified. As the years wore on he has been called high functioning autism and Aspergers, but not all aspies or high functioning kids can get through life without assisted living as an adult and none of them do well as kids if we treat them as if they are just typical kids. It doesn't change them. It always amazes me that we make allowances for diabetic kids (they can eat in class, drink water, go to the bahtroom etc), but so many people do not understand that Autism Spectrum Disorders (ASD) kids are just as needy as the diabetic kids. They both have special needs and always will. It is best to learn to teach them to live with their disability the best you can. They will not all reach the same level.

    Take care ;)
  13. WearyWoman

    WearyWoman Guest

    Terry - Thanks for posting. I'm glad to know I'm not alone. This has been by far the most difficult challenge of my life - raising an Autism Spectrum Disorders (ASD) child. difficult child is having the most trouble consistently when asked to switch tasks. Usually it happens after he's had his free choice time and then doesn't want to stop what he's doing. If the next task, i.e. drawing, reading or writing, is not enjoyable to him, it's even worse. We will in all likelihood request a meeting with the team sometime soon. Here's my biggest wondering right now - Do we just let him do whatever he wants to do so that he doesn't have a meltdown, or do we keep trying to help him adapt to requests and instructions? Maybe there is a middle ground somewhere, but right now, it is extremely difficult to get him to even get dressed, eat at meal times, or get ready for bed. He resists any attempt to help manage his time, and shifting activities is a very hard thing for him, even if the next activity is something we know he likes doing. I want to keep an open mind about the diet. I just know that in the autism support group I was attending, that I felt so inadequate with the whole thing. All of the other moms were micromanaging their kids' diets and spending a fortune on special foods and DAN doctors, etc. I work full-time+ and so does my hubby. We live in a very rural area, i.e. the nearest grocery store is a 20-minute drive away. I guess we could try to slowly eliminate/change things, but according to the other moms in the autism support network, unless it is done 100%, it won't help. Maybe that's not true, but that's what their position was. As a mom of a newly diagnosed Autism Spectrum Disorders (ASD) child a couple of years ago, I now look back and wonder how groups like this can promote a diet as being the gospel truth for treating autism. It hasn't been proven, and celebrities making claims won't convince me either. More research is really needed, and from what I understand, the development of autism is now believed to occur in the 5th to 6th month of pregnancy. Brain overgrowth and then diminished size are noted in early childhood. It's fascinating, and I look forward to the information research will continue to provide.

    Valerie - I'm very glad to hear about how well your son is doing. I need that hope for the future, as right now seems pretty bleak. We were surprised at how inexperienced our therapists are, and the worst thing would be for things to get worse - ughh. This was supposed to be a positive thing. I know it's too soon to make judgments, but maybe we should request to have some more experienced people on board. One of the therapists in particular, has zero training, other than being the mom of an asperger's high school teen. She is trying to help, but sometimes I just cringe when she pushes his buttons, telling him she'll take away his toy until he makes eye contact or telling him that she hopes he knows his toys have been taken away while hie is in full meltdown. Let's just pour a little more gas on the fire while we're at it!!! I hope we can figure things out so he can have a bright future like your son.

    Midwest Mom - Glad to know I'm not the only one not doing gluten-free, casein-free. I'm not writing it off completely, just choosing not to do it at this point. Maybe I'll change my mind, but I'm just not convinced at this point. Your experience with the other parents is telling. Of course we want to take control and do something - anything to cure our kids, but let's face it, the diet isn't a magic bullet - at least for most people. You're right that Autism Spectrum Disorders (ASD) kids cannot be treated as typical. It amazes me how little training is required of classroom teachers, since these kids are mainstreamed in public school classrooms. I wish special training would be required for classroom teachers who have autism spectrum kids in their classes. It would be so much easier than for the families to have to start all over again each year, explaining what autism is and how it affects their child. Our difficult child would not appear obviously autistic to most people. It would take time and some training to really see it, since he doesn't have some of the more overt characteristics. From the outside, he looks like a stubborn, inflexible, hyperactive, naughty boy who has a speech problem. I'm SO tired of trying to educate the school personnel about his sensitivities, need for a routine/schedule, social skills support, etc. He has an IEP and receives speech and occupational therapy through the school. The school autism specialist is very knowledgeable, but it's hit and miss with the classroom teachers.

    The ongoing issue is how much to push our difficult child to be more compliant and flexible with home and school responsibilities. Can these things improve with Autism Spectrum Disorders (ASD) kids, or will it always be like this?
  14. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I did not want my son in mainstream school. Too many kids surrounding him made it impossible for him to learn and when he was very young he needed 1-1 to get assurance. His Special Education years (and he was NOT in a class of just autistic kids...I didn't want that either) has really helped him function NOW. I think kids are often pushed to be in typical classes where a pencil dropping sounds like a bomb to an Autism Spectrum Disorders (ASD) kid and where other kids make fun of them (this hasn't happened to my son either). I liked him spending half the day with a very empowering teacher and then taking his other courses with other kids and an aide who sort of hung in the back of the room, ready to help any kid who needed it (so my son didn't stand out). They handled it all beautifully. I love, love, love his school and the teachers. And his Special Education teacher didn't really know what Pervasive Developmental Disorder (PDD)-not otherwise specified/Aspergers was, but she listened to me and really helped him. They really keep in touch even though my son has moved onto high school. He still visits her class and helps the other kids. He's doing that this summer.

    Genetics is becoming a major reason scientists believe autism exists. It runs in families. In some cases, especially with adopted kids, prenatal drug and alcohol use can also cause autism. My son's birthmother did abuse drugs. As for the celebrities, I think they have so much money and so much help that their kids just improve faster because ALL Autism Spectrum Disorders (ASD) kids can improve immensely with the right help. I look in the eyes of Jenny McCarthy's five year old, and see that autism stare. I am sure he still has it...he isn't cured. There is no cure. But many kids start to seem "less autistic" around five...because many learn to talk and socializing at five is run around and the kids follow you.

    When the kids start to have to have give-and-take, heartfelt conversations, the Autism Spectrum Disorders (ASD) kids start to falter. Also,t hey tend not to have the same interests that their peers have and that also causes problems. My son would be bored to death standing in a mall, listening to rock music, looking at girls. He'd rather be home doing his techie stuff. I accept him for who he is. I can't make him like to hang with his buddies and look at girls. That's not who he is; how he was made. As long as he is happy, and he seems to be, that is all I care about. I don't worry about him marrying, having kids, etc. I have my other kids who have and will do that. This one walks to the beat of a different drum.

    As for the diet, I don't want to fight over food and no child is going to keep up that diet as an adult. I also have never been convinced it does any good. So that's my reason for never trying it. I am scared to death of DAN doctors. They are NOT really doctors and they try to tell the parents there is a cure. Insurance doesn't cover it either. I'd rather stay with reality.

    Good luck, whatever you decide to do for your son :)
  15. Marguerite

    Marguerite Active Member

    I just had to skim, I'm grabbing a moment. First, never underestimate the degree of raging an autistic kid is capable of. They have a very strong direction towards what they feel they need to have or do, and trying to deflect hem from hi very strong sense of purpose will trigger atomic level raging. Forget about whether it is out of proportion tot he trigger - you don't know exactly what the trigger is from the child's point of view and anyway, if the provocation continues then the trigger is multifactorial. The rage can be spectacular and infinite in scope. It is always within the bounds of autism.

    Then their perspectives are very narrow. Time for them to recognise that in this case, that have just leant a new degree of intensity of raging. Because it DOES fit!

    Now to a major concern I have - your son has a "I need a break" card, he showed it, and they ignored him.

    VERY BAD!!! It teaches him that their word is not to be trusted, and in turn this teaches him that nobody will be honest with him and this is because he is not respected. He therefore will be taught that respect is cheap and he will also not show respect, if it is not shown to him.

    These therapists need to read "Explosive Child" AND to take it on board. NOW. Yesterday.

    it can be as simple as that.

    As I am currently dealing with (see my own thread on accusations) people who are seen as experts and who claim considerable experience are still capable of getting things spectacularly wrong.

  16. WearyWoman

    WearyWoman Guest

    Midwest Mom - Sounds like your son's school is awesome. What kind of organization is it? As I mentioned, we live in a rural area, and the resources are less here, I believe. Our son's social differences have become more noticeable in relation to his peers as the years have passed. I'm so glad to at least understand that he is on the autism spectrum. It was worse not knowing. It's refreshing to hear your comments on DAN "doctors", as I have always felt the same.

    Marguerite - I know you're right on with the fact that autism can predispose to significant rages and tantrums, as the child's point of view is the child's reality. Unfortunately, in our experience, teachers and professionals like to separate difficult child's autistic behaviors from his other behaviors. In other words, they seem to think that some of his behaviors are just the result of bad choices on his part or poor parenting on our part, not unlike other neurotypicals demonstrate at times. To clarify about the "I need a break" card, he is given that card to use only once during a day's therapy, and he had already used it, so the "rule" is that he cannot use it again. I feel inadequate to know what is the right or wrong thing to do. I'm not an expert. That's supposed to be the therapists' role, however, as I mentioned, they are not all that experienced. Yet, the other night, the agency sent a more experienced therapist who difficult child had never met, and she tried to intervene in one of his meltdowns by approaching him, which he hates when he's upset, and it sent him over the edge. He threw things at her, yelled and screamed, and ran away. It went from bad to worse in a hurry. His therapists may not have seen the gamut of autistic behavior, as they're so new. A good friend of ours has a son with autism who is the same age as our difficult child, and he says his son does not have rages or meltdowns - no real discipline issues. At the autism parents' support group, I shared about our difficult child's difficult behaviors, and the other parents looked at me like I was from outer space. Apparently, their children are passive, struggling only with social skills, sensory, and health issues, not rages and out-of-control behaviors. Their advice to me is always the same - the gluten-free, casein-free diet is the answer to everything, as well as supplements, chelation, and some sort of system for removing toxic metals from the body. I have the original Explosive Child book, and I would like to get the one by Riley as well. I understand the basket approach, but in which basket should his therapy directions fall - Basket A, B, or C?

    I did read your other post, and I'm sorry to hear about your situation. I would be furious if it were me, I'm sure. Sometimes the "professionals" are so unprofessional - that's for sure! I hope things resolve for you in a good way.


    Weary Woman
  17. confuzzled

    confuzzled Member

    i'm just skimming too and i'll come back and read more, so forgive me if this has been said...

    i'm a firm believer that behavior(s) are a form of communication. and from what i saw, your son's major meltdown issues are surrounding therapy--he's telling you something, loud and clear.
    it could very well be the unexperience of the therapists. it could be that the physical act of writing/drawing is an impossibly hard task for him. it certainly could be a rebound effect of the focalin.

    but your son is "screaming" for help.

    i understand the mentality of wanting to do everything to help your child, and ABA is a proven modality (so they say)....but if you dont have someone proficient in implementing ABA it can have disasterous might be interesting to see how his meltdowns are if you backed off on therapy for a bit. (or, how is he on the off days? do you see the same meltdown patterns when there is no therapy?)

    the suggestion to keep a diary is an excellent one--i just use a calendar and jot a word or meltdown:2pm-homework. as much as i *think* i know what cause X, when its on paper, in my face, i can really say, OH, thats it!

    as for the gluten-free, casein-free diet...again, is a modality that works--*IF* you have a child with the gastro or allergy component. quite frankly, its a ginormous pita to just do for no real reason, and as midwest pointed out, will do very little, if nothing, if not truly needed other than aggravate and bankrupt mom. and its really not wise to start until you have your child tested for gluten/casein intolerance--removing g/c from your diet prior to testing will skew the results and you'll never know for sure *IF* you need to do it.

    i'm also a firm believer that just because a child has issues, we as parents cant throw common sense out the window. yes, certain "typical" parenting things have to be tweaked, but some dont--like, would anyone here let their typical kid eat birthday cake three meals a day, every day?, of course not :).

    the fact you are posting here re:meltdowns/therapy speaks volumes....something isnt sitting right in your gut.

    listen to it :)
  18. Marguerite

    Marguerite Active Member

    Every kid is different in how they react and what to.

    Concerns - you can't separate the autism behaviours from the "bad choices" behaviours. The reason - kids who know better and are capable of behaving properly at all times but for various reasons choose not to, are the ones who can be accused of making bad choices. But a child who has any of those steps missing and who gets punished, is being punished for things he can't help.

    As for only being able to use that card once a day - ridiculous! It would require a degree of self-awareness and assessment/planning of his day and his expectations, that I doubt he is capable of. Crikey, a lot of adults wouldn't be capable of that level of careful analysis, especially when upset and trying hard to not have a tantrum.

    Each tantrum is a new event. Each event needs to be treated as a fresh start with fresh opportunities to get it right or not.

    The responsibility should not be all on the child, to behave. A child who has taken longer to learn what is appropriate, a child who is ill-equipped to communicate effectively at all times and a a sufficiently high level, is far less capable of coping when thins get frustrating.

    The school is mishandling this. They are close, but unfortunately because they are falling short of the mark to this extent with this child, they are doing more harm than good.

    What is needed is a therapist who gets him, who can come in with you to set new ground rules to try. Don't be angry with the school therapists, instead say to them, "We need to start over and formulate a special plan for this child. But you will not punish him for any action he cannot fully control. Instead, we will lead him, not drive him."

    If they don't work that way, you need to find a different placement.

    ABA is good stuff, in the right hands for the right child. But I've observed that in some cases, ABA can be too rigid, can be a "one size fits all regardless" approach with no flexibility for individuality, and that spells disaster for the child for whom it is not such a good fit.

    You are a parent and you probably know your own child better than others. They are professionals with training which can be useful to you. You need to be able to work as a team, to listen to one another, to learn form one another. Have faith in yourself and respect your position of authority and knowledge as your child's parent. If the others in the team do not show the same respect for your position and knowledge, then that is another sign that you need to make some changes. sometimes you can make those changes with the existing team. Sometimes you have to cut your losses. But you have the right, for the sake of your child.

    The best start for you is to try to get into your son's head. Watch him closely. Quietly analyse everything he is doing and why he is doing it. Try to think like he does, see the world as he sees it. Remember, everything has a reason that makes sense to him. He is not random, he is not behaving chaotically. There is extreme order in his choices. The problem is, others are imposing their choices on him (with reasons that make sense to them, but not necessarily explained to him) and this is directly clashing with how he thinks.

    Sometimes we need therapy to stop an autistic child from developing serious repetitive and unproductive patterns of behaviour; certainly that used to be the idea. But increasingly (and form my observation) it works better to begin from where the child is now, rather than immediately expect the child to behave normally by punishing them into it. From the child's point of view, punishment conveys two things:

    1) I am bigger than you are, more powerful and I can impose my will. For now. One day you will be bigger and stronger, then you will be able to impose your will.

    2) Your lot in life is to be punished. You deserve it because of who you are. You cannot change this because you are not in control, you never will be permitted to be in control.

    A child receiving these messages has few options to object, except by screaming. A more passive, less bright child is actually more likely to be well-behaved and complacent. It is often the more driven child, the one with obvious, strong obsessions about certain things tat constantly clash with those trying to control him, who will react violently, all the time.

    My GF3b is actually well-behaved and compliant, because he has learned a lot of social lessons and really tries to be good. The most important thing - he has learned to value respect and also learned that he will be respected. He had to be respected before he would show respect to others. From very early on, a teacher who publicly disrespected him would be publicly humiliated by him. But although people tell us what a good kid he is these days, if HE feels disrespected, he can rapidly become very unpleasant to the point of being physically violent.
    As he gets older, the more he learns more appropriate behaviour to handle it. But in order to get this improvement, we first had to change how we dealt with him and we had to NOT handle him the way traditionally a naughty child would be handled. Because this bad behaviour is NOT nauhtiness, not at all. These kid want to please you. But they respond this way first out of frustration and a feeling of having nowhere to go, to change the bad stuff they feel is happening to them; and secondly, they need to learn by imitation how to behave.

    Observe him. Does he try to behave towards therapists the way they behave toward him? For example, if someone tries to physically hold him to make him compliant, does he in turn (at a different time) try to forcibly hold someone (perhaps by the arm) or in some other way apply physical force to someone, if they aren't doing what he wants them to do?

    Of course that is unacceptable behaviour in a child. But how can he ever learn that/

    We found that difficult child 3 has no concept of the difference between adults and children. To him, everyone is equal. He will behave towards someone the same way they behave towards him. He learns by coping other people's behaviour. It is the only way he has been able to learn social interaction.

    Some things they can do well; other areas, they are infants. But they can learn. You just have to find the right key for each child, that unlocks their brain to let them learn.

    There is no one textbook for all children. YOu could hire the best therapists in the world with decades of experience. But they will have to re-learn everything to find how to apply it to your child.

    One final example - difficult child 3 was given an important role in a feature film, a film about a boy with an autistic brother. When it became apparent that difficult child 3 would need more support in learning his role, they hired a professional therapist/aide to work with him. I was there,I could have done his, but they chose to hire an "expert". She was a nice lady, difficult child 3 liked her because she played games with him. What would happen - difficult child 3 would begin to get stressed, agitated and upset and this nice lady would remove him and take him outside, perhaps to play a card game. Everything this woman was doing, was designed to placate difficult child 3. And this was NOT the way to handle him.

    Instead, what he needed was a balance. He needed the opportunity to learn to cope with the stressful situation, to the level he could handle it. he needed manageable challenge.

    On the day of filming. difficult child 3 was word-perfect, action-perfect. But of course, multiple takes were going to be needed - sound checks, different camera angles, lighting angles and so on. A plane flying overhead, traffic noise - all sorts of reasons to do it over. FG3 began to get upset - why did he keep having to do it over? HE was getting it right, who was mucking it up?
    The aide tried to take difficult child 3 outside for a card game to quieten him down, but instead I intervened.
    difficult child 3, they need to do this over for all sorts of reasons. These people are professional, nobody is doing it wrong. But first they need the lights over here while they film you. Then they need to do it again with the lights over there. Then they need a long shot. Then a close-up. Then they need to do it with everyone else on stage. Then just you. Then with the music. Then without the music. Lots of reasons. You just have to say your lines as the director says. he's the boss, remember? But he needs you o do YOUR job, the one you learned so well. Once the director says he's got all the film he needs, then he will tell you you can go play a game of cards. But if you go too early, everyone else has to sit around waiting for you, and that is not fair to them."

    I took about a minute to explain, pointing to the lights and the cameras as I did so. difficult child 3 could see all the gantries, all the stands here and there. He got the message and immediately got ready for the next take. He did a brilliant job from that moment, and it was NOT thanks to the aide. If we had done things her way, filming would have been held up and wouldn't have been half as good.
    She was undoubtedly good with the autistic kids at her work, but she was not much help with difficult child 3, because she was too focussed on keeping him calm n the short term, and not on resolving the underlying reasons for him getting upset.

    I hope this helps.

  19. whatamess

    whatamess New Member

    Wow! What similarities our children share! ABA was one of the absolute worst things that ever was tried with my son! The punishments for non-compliance became abusive! Our children have transition issues and in ABA they are expected to transition a lot! I will message you.
  20. BeachPeace

    BeachPeace Guest

    Hi there - {{Hugs}}
    We have recently been through an increase in rages with my 7 yo difficult child son Blue and things have settled down a bit after treating an ear infection and a medication tweaking.
    I just have a quick minute but wanted to add that if you were to consider a medication change with your difficult child's psychiatrist or neurologist - Risperdal was the medication 2 years ago that changed our lives and stopped 90% of Blue's aggression. Some people here have had varying success with it - but your son's episodes sound so much like my son I just want to add that.
    Good Luck and {{{Hugs}}} you are not alone.