Help! Behavioral issues with my non verbal CP son!

Heather - posted on 01/04/2011 ( 21 moms have responded )

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My 6 yr old son with CP & global delay has been throwing severe tantrums & attacking other students in his class. He actually injured another child today! He is non-verbal and functions at an 18-24 month level, although he seems to understand a lot more than he can express. Until last September he has been fine with school, but this year he totally does not want to be there. His behaviors have been escalating. He has not had any changes at school (same teachers, aids, & classmates for the 3rd yr in a row), so I don't think there are any adjustment issues. We have tried lots of things at home & school to try & help the situation, but it's only getting worse! He's not really exhibiting these behaviors at home. Any suggestions or ideas??? It's to the point where his principal is considering suspending him, but I believe he'd see that as a reward & behave even worse when he returned! Help!

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Iridescent - posted on 01/06/2011

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He could have an underlying diagnosis, and be overstimulated. This would explain why he's having problems at school (lots going on there) but not at home. It's just a thought. If this is the case, your appointment with the Neuro Developmental Specialist is perfect to find and treat it. In the meantime, you may need to go under primary care to get safety measures into place, such as mittens to prevent scratching others, etc. They are restraints, so must be under a doctor's orders, and are NOT a permanent solution. I'd also suggest your school OT start by performing a sensory evaluation and base treatment on those results.

Heather - posted on 01/11/2011

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Thanks Karen! It's funny you mentioned the ipad because I have been looking into them for him & proloquo is the app i am considering! He has something called a gotalk9 at school, which is a low-tech communication device (voice recordable), but I didn't want that for home because it's limited to 54 words/phrases. I think once he gets the hang of that he'll go beyond that level VERY quickly, so why waste the $$? The only issue with the ipad is he would need the full size one bc of his motor skills the one on the wrist is way too small, so we need a way for him to carry it around easily.
He has been getting sensory breaks- they made a section of the classroom for him & also in a different room that's quieter if he needs too. Problem is he comes in crying & stays that way most of the day & they can't just let him stay there all the time, so they use it when he's really tantruming to try to calm him. He hasn't actually been suspended yet, but the principal (who I just found out has an adult child with Down's Syndrome) said we need to get a "behavior plan" in place or she won't have a choice about suspension next time.

Britt- Thanks for the idea. I don't think it's foods as it doesn't seem to matter what he's eaten as far as his behaviors. I am pretty familar with "traditional" food allergies as I have nannied for 2 children with severe food allergies and have an autistic step-nephew with "leaky-gut who has to have a gluten/casein free diet or he gets sick & his autistic behaviors increase exponentially if he goes off it. I will keep a closer eye on what my son eats though- i'm not going to rule out anything yet!

Michele- thanks so much for sharing; I certainly won't give up & it was so heartening to hear that your son improved so much!

Kris - posted on 01/09/2011

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Could he be understanding more than we give him credit for and he's being treated like a 2 yr old when in fact he is possibly developmentally higher? Is he having pain? Is he unable to express himself and that's why he's going off like a cannon? He could be aware of his limitations now and he could be very angry about that. Is there a play therapist who works with children with developmental delays to help him work through what is happening for him? Could you look for books that are age appropriate to what a child would be going through at this time in his life to read to him? Like, "Its hard to be five". Check amazon. Spending time just talking about what it could be like for him may have him see that you and the people important to him really do see him as whole and complete just as he is and as he is not. Address what could be his concerns. Expect that he understands everything and speak to him as though he was six with all that a six year old deals with then also speak with him knowing he is unable to express himself. So go be his expression for him. My six year old is having similar issues and he is given a lot of time, love, attention and we communicate to him knowing he has a lot to say that cannot be said. So we say it for him. And I do tell him that I don't know exactly what it's like but I could imagine it and I'm going to try to speak to that which he cannot express. Hope it helps. email me if you want someone who may be in your same boat to share with, express with, or cry with. I'm here. malachite@email.com. best wishes! ~Kris

Erin - posted on 01/07/2011

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It sounds to me like your son might be really unhappy with his school placement. Maybe its time he moved on to another classroom? He might feel babied or patronized. He might be bored. He might feel he isn't listened to. He might see other kids and want to be with them. He might have developed an intense dislike of someone.

My daughter had some really awful behaviours for a while and we finally figured out that it was her way of expressing how much she didn't like the resource/spec ed teacher or the activities they did together. She also didn't like having to use a separate washroom from the other girls in her grade. It all turned out to be pretty reasonable stuff once we looked at everything from her perspective. Maggie's diagnosis is Angelman Syndrome, she is considered autistic, to have CP, epilepsy and is developmentally considered around the 18 month level. But "developmental age" really ignores the fact that she is entirely a 7 year old. If your son has been in the same room for 3 years, he may just want to move on with older kids.

I have a friend whose 8 year old son became violent at school and it only escalated. It took almost the entire school year and multiple suspensions before they figured out the problem: the OT was actually using corporal punishment. His acting out was because he was being abused. The OT was fired and the hitting, spitting, everything stopped. It was really the only way her son could say something was really, really wrong.

I would also spend as much time as you can observing for yourself what is happening in the classroom. I work as a fill-in classroom aide and there was a boy who became very violent and aggressive. It was clear to me that he had learned that violence = principal's office. The principal's office is quiet, has plastic animals and puzzles. So if he wanted out of the classroom, he just had to be violent. They tried to switch it by using a different room as his pull-out when he was violent, but that room had legos. So violence = lego play. Some kids learn that violence = home. I would want to observe for myself. See what the adults and kids are doing before this happens. See what results after his disruptive behaviours. See if maybe the aggression occurs when he is trying to express something and he isn't being heard. It could be that he is getting "rewarded" in unexpected ways. For example, aggression can lead to TONS of intense adult attention and that by itself can be the reward! It could be that there are certain activities he truly hates and he has learned he can escape from them by being disruptive enough to be pulled from the class. It could be that another student or an adult is actually doing something to provoke him. I think you need to take careful notes for a while about what times it happens, when happened just before he acted out, what exactly he did, who was the target of his outburst, and what was the result of his misbehaviour. You may find unexpected patterns or trends that explain his behaviour.

GOOD LUCK! Having a non-verbal kid is so hard when they can't explain what is wrong!

Also, just for what its worth, there are forms of epilepsy that can make a child become very aggressive or disruptive, and we've seen this with my daughter in unexpected ways, but whenever the problem has been medical like pain (she has migraines) or epilepsy, she's been consistently aggressive at both home and school. If the problem is just in one place, the cause of the problem is usually specific to that place too.

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Kim - posted on 04/29/2013

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The School is also trying to send her home if she goes to sleep. Anyone have these issues.

Kim - posted on 04/29/2013

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I have a non verbal 16 yr old female although she has about 200 words
when she wants to use them. Uses her ipad and has proloqou, but the minute she enters school, goes balistic, bites, hits pinches and screams. She can spend all day on her computer or ipad at home. She has spastic CP is in awheel chair but very smart.

She is on depakote for seizures, resperdol for behavior which not working, trazodone to sleep which does not really help. TRying to find a behavior specialist here in Tulsa but there are not many available. Her prolactin level is high due to the resperidone.

Any comments would be greatly appreciated. Really frustrated.
Thanks.

User - posted on 05/21/2012

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our autistic son was excluded from a school after just 1 term he is now in his second school and doing so much better - at the time I believed the school were doing all they could to help my son and were deverstated to loose his place at the school. But now seeing how he is in a different school with a better attitude to his problems and close suppervision I now know the first school were not helping my son - purhaps it is time to look for a new environment for your son if he is nolonger happy in the current school? (our second son is non-verbal and attacks other children - he generally does this in bussy environments quieter one to one environments suit him better xxd

Rebecca - posted on 01/13/2011

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wow i am so sorry i dont have no advice. we work with early on for right now anyways with my youngest who is almost three well he has tantrums and screams etc.. but not that bad. they told us to hold him down you know n your lap until he calms down. it takes a lot of strengths but after about fifteen twenty sometimes a hour he is ok. but yea thats what we are doing. but i wish you the best of luck hon, keep us inform plz

Edith - posted on 01/13/2011

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I have a 17 year old. When he was younger he gave the teaching staff fits. We tried to deal with the problem at home too even though we had no problems at home. He became angry at home and would not mind there. We went to school and made sure the staff there knew it was a problem there and had to be handled there. Sending him home was what he wanted. We spent a lot of time at the school and found the problem. If you or anyone has to get on him it has to be when and where the problem is. Joey has downs syndrome. A lot of times children know more than we think they do. Try changing classes to start then go from there. Good luck

Iridescent - posted on 01/11/2011

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Britt, if you have found the supplements have made such an improvement, and the child is also autistic and has other health issues, you may very seriously want to consider mitochondrial disease testing. The baseline treatment is exactly that. With the diagnosis, at least you'd know what to expect in the future, have help covering those supplements which help, and have others to talk to with a very similar situation. You must request it.

Britt - posted on 01/11/2011

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Heather, have you considered food allergies? My daughter is now 15 and she is autistic. I had to her tested for food allergies through the blood tests which showed no allergies but I guarantee she reacts to certain foods or food additives. She can be very aggressive and destructive both at home and at school.
Also, have you looked into good supplementation?

I ask both of these questions because I (after much prodding from my mother) try a special diet which did help and more recently it was a cocktail of high quality supplements that had helped. Both have been to high in price to continue all the way through but it made a big difference. Of course, you will want to discuss both issues with his doctors but also finding a good nutritionist and I can give you information to also reach a naturopath who is very knowledgeable on meds as well as supplements.

Michele - posted on 01/11/2011

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He sounds just like my 15yr old when he was 6yrs ... do not give up on him!! My son is now 15yrs old and it the most loving child ever ... when he was younger WOW watch out is about I could say. His bus driver this year actually was very nervous to have him on her bus because she had him when he was smaller ... now she tells me all the time what a wonderful boy he is and so forth.

I know we did a lot of restraining during the hard years .... maybe that helped. We also have a friend through his school that would take him from time to time to give him a different environment and us a break at home. The issues w/ my son started at school as well and then eventually came into the house.

Again don't give up on him and stay strong willed ... the stronger your love the better!!! Best of luck always w/ your Little Angel!!

Karen - posted on 01/11/2011

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I read alot of the replys but not all of them so I appligise if some of this was already said. You mentioned that he doesn't have verbal skills and small motor makes signing hard for him what does the school use to help him communicate? My daughter had a 4 year in her childcare (who received special ed services in the same building) her parents got her an ipod that straped to her wrist and it had a program on it for talking, it had the usual pictures for words and she would select the pics and it would read the words for her. My son who has small motor delays and Sensory processing disorder can use my ipod and nagivate it just fine we don't use the speach program becaues we dont have a speech delay but it was a wonderful tool for her. you just need a small 2nd generation ipod that you could probaly get on craigslist. the program is called Proloquo2go. http://www.associatedcontent.com/article... I would not let them just keep supending your son they need to figure out how to help him. I think that is maybe one of a few things, he has senosry processing disorder this s what drives my son, he your son getting regular sensory breaks, is he getting overstilulated and need a break from the classroom, last year they were talking about moving my son to a room for kids with behavior issues which I told them they would have a fight on their hands this year he is doing fine why.... because they gave him a consistant definate plan for when he is overwhelmed or upset, This helped before he would get overwhelmed or upset react and tha would get him in trouble and it would just esculate from there now he knows if he needs a break he has a crash area to go to and even if he gets to upset they remind him this would be a good break time and he takes it. I used to get calls and emails at least 3 times a week, now I think I have gotten 4 all school year. I think that you should look into helping your son communicate that my help a ton if he has a way to say what the problem is before he acts out. I am like you the school went stright to he need meds, my response was try work as worked in the past (he was at a childcare in a special ed building but not a special ed childcare and they were able to work with him issues) so I told they they had to try what worked first.

Heather - posted on 01/11/2011

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he has a neuro appt in Feb., & I do plan on bringing up these issues there of course. I'm not sure how I would feel about meds, as this seems to be pretty much isolated to school. I would definitely want to exhaust all other possible solutions first. He's never had any seizures either. I would of course try it if nothing else helped. I'm not against meds, but I think it should be a last resort. Thanks for the help, & I'm glad you found a solution that works for your son- that's encouraging!

Sherri - posted on 01/11/2011

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I actually went through something almost like this, only my son was exhibiting the same behavior at home,just on a slightly smaller level. I can tell you exactly how I handled it. After being told by his pediatrician that it was just growing pains, I had a meeting with his teacher, therapists, etc. and someone suggested talking to his neurologist. After much debate and demanding on my part, my son was put on a behavior medication. He now takes depakote, a combination of seizure and behavior medication, and it's like he's a totally different little boy. He's responsive and hardly ever throws tantrums, when he does they are on a much smaller scale. I suggest if your son is seeing a neurologist, consult him or her about the behavior right away.

Heather - posted on 01/09/2011

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Erin- he doesn't have a genetic diagnosis, & he's been tested for everything under the sun- all his results are normal, including Anglemans. His diagnosis is symptomatic, as even his MRI, EEG, etc. were unremarkable. I do think he might do better with a male aid, but unfortunately there are none in the district, & they haven't even had any qualified male applicants. ( They can't post for a male because that opens them up to "discrimination" accusations- it's a public school.

Kris- thanks so much, I may take you up on that! We do believe he understands a lot more than he can express, we just can't tell exactly how much! They tried sign language, but because of poor fine motor skills he can only approximate "baby" signs. He was finally able to isolate his pointer finger last spring so they started him with PECS & an augmentive communication system. He was doing pretty well & then his behavior problems interfered & they have a hard time teaching him any new "words" because he's just so upset all the time. It's self- defeating for him because if the tantrums are because he can't express himself, he would benefit from learning it. We do try to talk to him like any other 6 yr old- don't use baby talk or simplified words; we give him time to try to respond, etc. He even has to "help" around the house as much as he can. I'm not sure about a play therapist; his case manager is a child psychologist with her focus on special needs kids, but he won't even calm down for her and will just throw down any toys or activities she offers him.I am reaching my wits end!

Also, I took him to a birthday party for a classmate this weekend at a "bounce" arena (inflatable bounce house, slide, etc.) which is a place he normally LOVES, and as soon as the kids in his class arrived he also started freaking out and tatruming so we had to leave. This was his first birthday invite from school, & I was really hoping that seeing his classmates in a fun environment that he normally enjoys- without the demands of school- would be helpful, but I guess not!

Erin - posted on 01/08/2011

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Does your son have any genetic diagnosis? He sounds a lot like some kids I know with my daughter's syndrome, Angelman. She also LOVES new places, new people.

Good luck! It sounds difficult and like you said, he just doesn't want to be there.

This might be a totally random idea, but are any of the staff men? I know a little boy who transformed when he had a male aide. The guy was young and cool. It was like the boy suddenly had a role model and someone to be cool for. He had related to all his female staff like mom-figures but he really wanted this male aide to like him. He toilet-trained in 3 weeks just be switching aides to a guy. Even now, the school always tries to get him a male aide because of how different he is with one.

Heather - posted on 01/07/2011

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Wow Erin, you've given me a lot to think about! I appreciate it! I don't think it's wanting to be with older kids- even though he is in the same class the kids are all his age (6-7) & they've all just been "moving up" together, even the teacher & aids. He may just need a change, as he loves new things and new situations. They've tried taking him to different classes in the same school to see if a change in environment would help, but no luck- I think he's just too familiar with the whole school because he's been there since he was 3 & knows most of the staff & classes. He's been really happy there up until Sept. & as I said, there's no obvious clues as to why he's having such a hard time now. He will most likely be in one of the other schools next year, but they don't want to move him now just to "try" it because if that doesn't work they can't just keep flipping him around. Part of it I'm sure is frustration, but it's definitely a lot more than that. The teacher video tapes him in class for me & sends me the discs so I can see what's going on. When I was in the class to visit he wasn't as bad, but then he knew I would be bringing him home after the visit so he tolerated it a little better. He really just seems not to want to be there at all, because the crying is pretty much all the time, & the aggressiveness seems completely random. No particular time of day, activity, therapy, etc. I just hope we can figure this out soon!

Heather - posted on 01/07/2011

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thanks Amy, I'll ask about underlying issues at the neuro appt. He does have sensory issues & needs a lot of input, but i've been told that is not uncommon with CP. He mainly attacks people by grabbing & pulling hair or kicking. They use a Rifton chair at school for safety when he does table work or eats & I had to sign a permission letter for that b/c it's a restraint, but I didn't need a dr's note. Thanks for your suggestions!

Heather - posted on 01/06/2011

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There is a behavioral specialist on staff at his school whom we've been working with, but she's just about exhausted all her ideas! He also has an appt in Feb. with a neuro developmental specialist, so I'm going to see if she can get to the bottom of it. It has been suggested that perhaps he's having headaches, but he doesn't seem to have pain, is eating and sleeping well, & the behaviors really only occur in the school setting. Other than an occasional tantrum, (usually during a diaper change) he's fine at home.

Dorothea - posted on 01/06/2011

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Oh my, I have no idea how to handle that. Have you had him evaluated by a behavioral specialist? I know most if not all Childrens hospitals have one on staff.

I am actually in the same boat, and although it's not quite like that, I am taking my son to be evaluated at NCH this spring. Good luck, and I'll check back to see what others say so that I might get some ideas too.

Good luck.

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