Behavior/Violence.

[bri276]

DD1 is 5, chromosome disorder, severe speech delay (receptive & expressive). 

At home and school, her behavior is manageable.  She is a good kid!  She has her moments, and being delayed, sometimes feels like I'm dealing with a toddler instead of a kindergartener but I can handle that and we work through tantrums and normal childhood discipline issues.  Time outs have been very effective with her.  You can just SEE her thinking through and controlling herself when she knows that something would get her a time out- like picking up a toy to throw it, stopping herself and putting it down, or hitting a cushion instead of a person.  Time outs are in her room where she's free to play and often does- and then comes out happy and we move on.  Sometimes weeks will go by without her needing one at this point.

Last IEP meeting, every single therapist and teacher agreed that there were NO behavior problems.  Full day kindy.  They had one week where she began pushing some kids if they got too close to her (she gets nervous with other kids re: personal space)- time outs solved it.

Great?  Great!  Except I can't take her anywhere that isn't 100% fun and child-oriented anymore.  As a baby and young toddler we went everywhere and she was an absolute angel.  When she hit 4 years old, it all went south.  Restaurants are virtually out of the question unless I bring her brand new toys and order her amazing food that she'll love and we leave quickly.  Grocery stores are like torture chambers.  The mall, the post office, anywhere I need to go and do errands, even most people's homes- I can't take her.  She literally lays on the floor and tantrums and hits me the second everything isn't going her way, i.e. she can't eat an entire package of cookies or something.  She CAN control herself- she does at school and home.  Once she knows time out is out of the equation, she does whatever she wants.

I can't talk it though with her.  She doesn't understand.  She only understands what's happening in the moment- if I put her in TO when we got home it would be useless.  Leaving the restaurant or wherever is giving in to what she wants- she wants to leave if it's not the zoo or museum or other kid's place.  She is 47 lbs and I can't physically carry her through stores anymore.  When she refuses to walk, we put her in the cart and then she tantrums and throws and hits.  This isn't the same kid.  People used to come up to me and compliment me on how quiet and sweet she was and one day she figured out she didn't have to be and it all changed.  My dad has moved across the country and wants to pay for us to visit twice a year.  I can't express how difficult the plane, airports, etc were.  It was an absolute spectacle, even with new DVDs and treats and toys and everything we could do to make it fun (of course, once she starts the violent behavior, we don't reward it and those things go away).

What can I do?  How do you stop behaviors in public with almost no communication?  I just hope the answer isn't that I have to keep her home so much.  :(

[~cassie]

Since time outs are effective, have you tried doing them when you are out of the home?  I have done plenty of time outs in our grocery store/friend's home, etc. 

[Linda on the move]

Does she have sensory issues? My DD's public tantrums were related to sensory stuff, so that's what I know the most about.

Rather than lumping every place that isn't home or school into one big pile, could you select one place that seem like it might be fairly easy to go to, and go there once a week at the same time and just help her make peace with that one place? May be an understanding friend's house? I'm thinking if you figure out one place, and then once it get's easy, add another place, it could snow ball.

And a cross country flight is not a "starter" outing. Tell Dad that he has to come to you next time.

sorry you are going through this.

[bri276]

Originally Posted by ~cassie 

Since time outs are effective, have you tried doing them when you are out of the home?  I have done plenty of time outs in our grocery store/friend's home, etc. 

I do them at my mother's house and it helps a lot- but there is a problem.  If the room is not basically child proofed, I am worried about leaving her there with the door closed.  However, if you stand anywhere near her, she uses "time out" as "attack time" and will become increasingly violent as you stand there trying to guard her.  This just escalates things.  So if I had a better idea of where to go I would.  You can't just make her stand/sit still- she won't do it, she'll freak out.  It has to be a closed off "go to your room" type thing.

Does she have sensory issues? My DD's public tantrums were related to sensory stuff, so that's what I know the most about.

Rather than lumping every place that isn't home or school into one big pile, could you select one place that seem like it might be fairly easy to go to, and go there once a week at the same time and just help her make peace with that one place? May be an understanding friend's house? I'm thinking if you figure out one place, and then once it get's easy, add another place, it could snow ball.

And a cross country flight is not a "starter" outing. Tell Dad that he has to come to you next time.

sorry you are going through this.

No sensory issues.  She's great in so many settings:  the beach, zoo, museum, park, sledding, playground, anywhere that there are kids- if we take her to a friend's house who has kids to play with, there is no concern at all.  She behaves like a perfect angel and enjoys herself and is gentle and loving the entire time because she's happy and having fun.  To be clear, we DO take her places all the time, I could never live with staying home all day!

It's as soon as she sees that where we are is a "boring" place that the whining escalating to tantrum begins.  Not every single time, but most of the time.  We used to go to Whole Foods or Trader Joes every week.  Once I was in my 3rd trimester and couldn't pick her up off the ground (likewise now that I have an infant in a carrier) ... I just can't go anywhere alone with her anymore.  In fact, another issue I forgot to mention is the refusal to get out of the car and go inside once we get home.  Ugh.

My dad's job doesn't allow him to take much time from work, unfortunately (he's a surgeon and when he moved joined a new practice so is somewhat low man on the totem pole again).  Once we got there, she LOVED IT! because she could go swimming.  She was great at my dad's house, but restaurants were not good.  I don't want to disrupt the relationship between my kids and their Papa so I will make the arduous journey but man, I wish I could figure out how to make it less excruciating!

[Emmeline II]

Is this related to the chromosome issue? because ds used to be like that, though he wasn't well behaved at school in K after the first two weeks; his issue is ADHD. I rarely took him anywhere between 4 and 6yo. If you don't get any better suggestions I'd take her to a psycologist/psychiatrist for an evaluation and a CBT.

[khaoskat]

Has she or is she in the process of giving up naps?  How does she sleep?  Does she snore?  Does she move around a lot at night?  Does she complain her legs hurt?

I would also recommend possibly looking at sleep deprivation, due to a possible sleep issue (ie sleep apnea; rls; etc)....

As far as timeouts in the grocery store, one thing that helped us alot with a trantrum...when they don't get their way out and about...ignore the behavior.  Put her in the shopping cart (preferably an empty one) and just watch for her safety (and of course yours)...

[Linda on the move]

Since you have a new baby and this behavior sounds like it is linked to pregnancy and new baby, I'm not understanding how it is a special needs issue. I'm not understand what in the situation is different than a typical child figuring out that they can act really crappy and mom can't do anything about it because now mom is holding the baby, who the child feels really has no right to be there any way.

I hate to say this, but have you considered a hand-held gaming device that she is only allowed to use in certain situations? It just comes out for the grocery store and such? Over the years I've become a huge fan of Whatever Works.

(For a while, my DH or I went to the store alone because going with both kids just didn't work. It passed. They got older.)

[Emmeline II]

Originally Posted by Linda on the move 

Since you have a new baby and this behavior sounds like it is linked to pregnancy and new baby, I'm not understanding how it is a special needs issue. I'm not understand what in the situation is different than a typical child figuring out that they can act really crappy and mom can't do anything about it because now mom is holding the baby, who the child feels really has no right to be there any way.

Idk, when my NT #2 child is in a public place and doesn't get her way she may pout, cry, and stamp her feet but she doesn't throw violent tantrums like SN ds did.
 

 

[bri276]

Is this related to the chromosome issue? because ds used to be like that, though he wasn't well behaved at school in K after the first two weeks; his issue is ADHD. I rarely took him anywhere between 4 and 6yo. If you don't get any better suggestions I'd take her to a psycologist/psychiatrist for an evaluation and a CBT.

Her chrom. disorder is very rare but behavior doesn't seem to be a feature from what little we do know.  What is a CBT?  Hearing it got better for you after 6 gives me some hope!

as she or is she in the process of giving up naps?  How does she sleep?  Does she snore?  Does she move around a lot at night?  Does she complain her legs hurt?

I would also recommend possibly looking at sleep deprivation, due to a possible sleep issue (ie sleep apnea; rls; etc)....

She sleeps for about 10 hours a night (stopped napping when she was 2 but sometimes falls asleep on the bus on the way home) but yes, she does snore. She doesn't seem to have leg pain.  We've been to the ENT who recommended removing her tonsils but are awaiting the cleft palate clinic as she might need another palate surgery and we have to coordinate with them on whether to do that. 

Since you have a new baby and this behavior sounds like it is linked to pregnancy and new baby, I'm not understanding how it is a special needs issue. I'm not understand what in the situation is different than a typical child figuring out that they can act really crappy and mom can't do anything about it because now mom is holding the baby, who the child feels really has no right to be there any way.

I hate to say this, but have you considered a hand-held gaming device that she is only allowed to use in certain situations? It just comes out for the grocery store and such? Over the years I've become a huge fan of Whatever Works.

(For a while, my DH or I went to the store alone because going with both kids just didn't work. It passed. They got older.)

It started before I was pregnant.  It is definitely related to/exacerbated by her severe receptive and expressive speech delay.  Most 5 yr olds would act up with a new sibling, but I've yet to see one attacking their parents violently or laying on the floor in public crying hysterically.  If a 2 yr old does it, you can easily pick them up and move on...not so easy with a 47 lbs kid who is only getting bigger!  Unfortunately, she loses interest in video games because she doesn't understand how to use them yet.  Or I would definitely try it! 

Honestly, one of the hardest parts of all of this is seeing my child so unhappy...I want to help her learn to deal with minor frustrations and disappointments without melting down.  I don't want to exclude her because it's too hard.  HOPEFULLY, it will get better with age.  Often, though, I think the reason kids get easier to deal with as they get older is that their communication skills increase whereas dd1's take much longer to improve. 

I just wonder what techniques are used for kids who can't be "reasoned" with because going forward, it may be a decade before we can do that.

[Emmeline II]

Originally Posted by bri276 

Honestly, one of the hardest parts of all of this is seeing my child so unhappy...I want to help her learn to deal with minor frustrations and disappointments without melting down.  I don't want to exclude her because it's too hard.  HOPEFULLY, it will get better with age.  Often, though, I think the reason kids get easier to deal with as they get older is that their communication skills increase whereas dd1's take much longer to improve. 

I just wonder what techniques are used for kids who can't be "reasoned" with because going forward, it may be a decade before we can do that.

A CBT is a cognitive behavioral therapist. Ds sees one for help with impulse control and social skills.

I'd also see if there is anything that can be done to help with the snoring as she isn't really getting 10 hours' sleep a night and that can have a big impact on behavior.

Another avenue is seeing a developmental pediatrician who could look at her behavior in the context of her other issues. We have an appointment at a hospital clinic next month  Center of Hope for Child Development

[~cassie]

On the sleep issue--I think that is one huge trigger for my nearly 4 yr old and makes his behavior worse.  He sounds very much like your dd when frusturated, he lashes out at everything, even himself.  We are starting liquid melatonin 1mg tonight to see if that helps him get better sleep at all.

[BetsyNY]

People used to come up to me and compliment me on how quiet and sweet she was and one day she figured out she didn't have to be and it all changed.

I don't think it's that she figured out she didn't have to be. Something changed, yes, but I don't think your daughter decided to have out-of-control rages for the fun of it. It's no fun to be out of control, it doesn't feel good.

My son has gone through phases very similar to your daughter--he has a tentative dx of ADHD/SPD and anxiety. A LOT of kids act out with their families and don't act out at school. School is a predictable controlled environment--a trip to the grocery store is chaos! The lights, the people, smells, colors--errands with special needs kids can be torture because it's SO many transitions. Add a receptive/expressive speech delay, which you describe as severe, and I can see why she'd lose it. 

As laughable as it sounds, it could be this is progress. She might be more aware of what's going on around her, and she's reacting to it. Whatever you decide, I think getting some professional advice could be worthwhile. 

[SilverLace]

My SN step son is 11, and we've had our own version of this for some time now.... when we would go grocery shopping he would run his hands along all the shelves, knock things down, lay on the floor, and run away screaming.  Now he doesn't go grocery shopping.  We also rarely take him out to eat.

It is probably different for us, because he is not with us full time so we can work around it in some ways.  I've just found over the years that since there are so many issues that we HAVE to deal with, that we let go the one we don't. 

Good luck. 

[bri276]

I re-read my OP and have to take out what I said about "most people's homes"- that's patently untrue and I must have posted without proofreading.  She is an ANGEL in MOST people's homes.

A CBT is a cognitive behavioral therapist. Ds sees one for help with impulse control and social skills.

That's what I thought- I wonder if they have non-verbal techniques?

Originally Posted by BetsyNY 

People used to come up to me and compliment me on how quiet and sweet she was and one day she figured out she didn't have to be and it all changed.

I don't think it's that she figured out she didn't have to be. Something changed, yes, but I don't think your daughter decided to have out-of-control rages for the fun of it. It's no fun to be out of control, it doesn't feel good.

My son has gone through phases very similar to your daughter--he has a tentative dx of ADHD/SPD and anxiety. A LOT of kids act out with their families and don't act out at school. School is a predictable controlled environment--a trip to the grocery store is chaos! The lights, the people, smells, colors--errands with special needs kids can be torture because it's SO many transitions. Add a receptive/expressive speech delay, which you describe as severe, and I can see why she'd lose it. 

As laughable as it sounds, it could be this is progress. She might be more aware of what's going on around her, and she's reacting to it. Whatever you decide, I think getting some professional advice could be worthwhile. 

I certainly don't think she has rages for the fun of it, but she isn't out of control.  She is within her own control.  It's very clear.  I know things like this are difficult to describe without writing a novel and I probably didn't do the best job, since someone was actually questioning me on whether this is a SN issue :lol  She controls herself well at home, at other people's homes except my mother and grandmother (who both spoil her, not in a good way).  Totally in control at an ice cream parlor, totally out of control at a Chili's doesn't make sense.  Lights, people, noise- she likes all that stuff.  I have sensory issues and will be cringing at loud fireworks or feeling anxious in a crowd and DD1 will be smiling and having a blast, waving and saying "Hi!" to strangers.  Unless she doesn't want to be there.

That's why- while I agree sleep is of the UTMOST importance and we are coordinating with her ENT and cleft palate team about whether she needs tonsils/adenoids removed- I doubt it's the root cause of her behavior.  It certainly can't help if she's tired, I agree, but she can be 1000% well behaved and happy- and more than that, she can deal with "triggers" that would cause meltdowns otherwise if she's in the right situation.  For example: if she saw a box of her favorite cookies in the grocery store she may well tantrum and scream and cry the rest of the time because she wants to eat them.  If she sees those same cookies in a friend's house, she might ask for one but would not even imagine tantruming if she didn't get it.  She might put her head down and look disappointed, but would be immediately distracted and move on.  At home, she would act a little more upset but wouldn't bother tantruming.  So there's a range of responses that are quite predictable based on what consequence or reward there is to her behavior (grocery store, nothing, friend's house, we might leave, home, she'll get time out).  We are surprised occasionally with a great outing to a "triggery" place, i.e. boring place, but it's pretty predictable exactly how she'll act based on where we are and what we're doing and who we're with.  We could go to a four star restaurant with her if we brought another child her age and she would ABSOLUTELY sit and color quietly (as long as the other kid did, that is! and I'm not saying I want to do that or expect that level of perfection, but just an example).

So it's like she does have the skills to prevent the meltdowns but when barriers aren't in place to help her choose to calm down- or conversely, huge benefits like continuing to play/swim/eat ice cream- she just falls apart.  I don't think she likes having tantrums.  I think she doesn't have the impulse control and foresight within herself to put the stops in place before it gets too bad.  It's like she needs external motivation or consequence or she can't deal with things she finds unpleasant.  I do not believe it's a "manipulative" tactic, mostly because DH and I have been incredibly consistent in not giving in to tantrums...if she's not doing it because she gets what she wants, she's not doing it because it's fun, AND she can control it when she wants to, that must mean we can somehow help her to learn to do it everywhere if we find the right tools.  I hope.  And to be clear, we are realistic, we don't expect her to sit and fold her hands and be seen and not heard.  Not at all!  She's still a little kid and one who needs leeway and understanding for her SN.  We just want to lessen the severity and frequency.

I agree a trip to the developmental ped is in order.  There's another place she's (strangely) wonderful, she loves going to the doctor!  So that is a great idea, thank you.

[mekat]

I'm sorry to hear about what you are going though.  I really think now is a good time to speak to an OT or behavioral therapist.  Dealing with special needs kids is drastically different as you are well aware and conventional discipline doesn't always work (or in our case never works without serious adaptations).   If you have tried everything you know and it is significantly impacting your family's quality of life then it is time to get professional help.  My son's behavior isn't as extreme as your child's but he does have his tendency to get violent sometimes.  Thankfully even at 6.5 years old he is very small and lite weight (just under 30lbs) due to his genetic syndromes (4q duplication & 7q deletion) so easier to deal with when he is too small and weak to cause a lot of physical harm.  He just recently decided to smack me in the head repeatedly at the pharmacy while I was waiting in line to get his Rx's.  Yes it did create quite a scene.  Basically I refused to put him down knowing that if I did he would promptly dump all the store merchandise off the shelves so he got mad and proceeded to demonstrate his anger physically.  Usually a combination of issues lead up to violent acting out for him.  A key ingredient for us is him usually being ill or in pain from medical issues when the behavior surfaces.  This episode he had a sinus infection and he was upset at having been at the doctors (severe white coat syndrome).  Any way just know you aren't alone dealing with rare genetic disorders and you aren't the only one that has been publicly embarrassed trying to reign in an out of control special needs kiddo. 

[Emmeline II]

Originally Posted by bri276 
I certainly don't think she has rages for the fun of it, but she isn't out of control.  She is within her own control.  It's very clear... 

So it's like she does have the skills to prevent the meltdowns but when barriers aren't in place to help her choose to calm down- or conversely, huge benefits like continuing to play/swim/eat ice cream- she just falls apart.  I don't think she likes having tantrums.  I think she doesn't have the impulse control and foresight within herself to put the stops in place before it gets too bad.  It's like she needs external motivation or consequence or she can't deal with things she finds unpleasant.  I do not believe it's a "manipulative" tactic, mostly because DH and I have been incredibly consistent in not giving in to tantrums...if she's not doing it because she gets what she wants, she's not doing it because it's fun, AND she can control it when she wants to, that must mean we can somehow help her to learn to do it everywhere if we find the right tools.  I hope.  And to be clear, we are realistic, we don't expect her to sit and fold her hands and be seen and not heard.  Not at all!  She's still a little kid and one who needs leeway and understanding for her SN.  We just want to lessen the severity and frequency...

I agree a trip to the developmental ped is in order.  There's another place she's (strangely) wonderful, she loves going to the doctor!  So that is a great idea, thank you.

It's not clear at all--even to you. I'd really abandon the idea that she's "in control" and choosing to act well only some of the time;  I'd entertain the idea for her if you said you've never set boundaries and only control her behavior with treats and toys but that isn't the case. To paraphrase someone on another thread, if the normal range of parenting techniques doesn't work then it's time to seek outside help (also meaning it isn't you, it isn't her, it's "the thing" that is causing the behavior).

I'm trying to remember something ds' psychiatrist said when I was presented with the option of switching to another medication to help ds' remaining impulse control issues--I said something like "I don't know if its the ADHD or he's choosing not to follow the rules" and she said something like "if it's the ADHD then he can't control it"; not the exact words but it is the basic idea. We switched his medication and the remaining impulse control issues at school (one of which was stealing treats from other children's' lunch; it had become a HUGE problem) stopped. I bring it up not to talk about medication but idea that isolated behavior problems can still not be about "choice."

[bri276]

mekat- DD is 3p duplication and 18q- :hug:  Are you a member of CDO? 

It's not clear at all--even to you. I'd really abandon the idea that she's "in control" and choosing to act well only some of the time;

Well, I'm willing to be open minded.  Let's say I'm wrong and she's not choosing to have a tantrum only in certain settings when she doesn't get her way but that it's completely out of her control.  Now what?  In that case, there appears to be no solution except to avoid those situations entirely.

I mean, I agree to a certain extent that it's The Thing causing the behaviors, the root cause, her developmental delays.  I'm not aware of a treatment or medication that can overcome dev. delays that make a 5 year old have tantrums like a 2 year old.  Frankly, I don't really even care if it's her choice, not her choice, if she's under her own control or not- I just want to know what to do to solve it.  I mean, obviously, I do not have an answer which is why I started the thread.  I am grateful to everyone who has taken the time to give me advice.  I feel like all of my posts have been confused and contradictory, probably because it is impossible to completely understand DD without living with her.  She's a pretty unique little kid. 

[Emmeline II]

Originally Posted by bri276 

Well, I'm willing to be open minded.  Let's say I'm wrong and she's not choosing to have a tantrum only in certain settings when she doesn't get her way but that it's completely out of her control.  Now what?  In that case, there appears to be no solution except to avoid those situations entirely.

I mean, I agree to a certain extent that it's The Thing causing the behaviors, the root cause, her developmental delays.  I'm not aware of a treatment or medication that can overcome dev. delays that make a 5 year old have tantrums like a 2 year old.  Frankly, I don't really even care if it's her choice, not her choice, if she's under her own control or not- I just want to know what to do to solve it.  I mean, obviously, I do not have an answer which is why I started the thread.  I am grateful to everyone who has taken the time to give me advice.  I feel like all of my posts have been confused and contradictory, probably because it is impossible to completely understand DD without living with her.  She's a pretty unique little kid. 

Yes, she seems to have a complicated set of issues, though it may not necessarily be the developmental delay causing the tantrums. My ds had those types of tantrums but his were related to ADHD and medication has reduced his occasional tantrums to foot stomping--though this summer I had to get ds (who was 55lbs and 2/3 of my height) out of the library while he was in a full-rage, arms and legs flying, head butting, fighting-for-his life tantrum, while trying to keep younger dd with me but not letting her get kicked in the head. Before ds was medicated I rarely took him out without dh with me (maybe once a week), so we did live like that for a long time.

I would look up developmental pediatricians, behavior clinics, and psychiatrists--someone may suggest something that works. The DP might take awhile to get into-- I'd ask to be put on their cancellation list.

[Linda on the move]

Originally Posted by bri276 
 I feel like all of my posts have been confused and contradictory, probably because it is impossible to completely understand DD without living with her.  She's a pretty unique little kid. 

sending you hugs. I don't have anything to offer, but I've been following the thread and I really feel for where you are right now. I totally relate to this sentence, it could have been written about my DD when she was younger.

I don't think there's anything *wrong* with skipping situations that don't work for a child for awhile. Skipping a situation for the next 6 months doesn't mean you have to skip it forever. Something could happen that makes some of this easier. She will continue to mature and learn, even though she's doing it at her own rate.

Peace

[chiefmir]

I think that problem solving about (let alone WITH) a child with significant speech delays (let alone any other SN) can be incredibly difficult.  I think you hit the nail on the head with this statement:

"It's like she needs external motivation or consequence or she can't deal with things she finds unpleasant "

This is definately true of children as a part of normal development and true of children (and even adults) with many different types of diagnoses, learning differences, ADHD, traumatic brain injury, etc.  As a part of normal development, I think that many/most kids have grown out of much of the behavior you described in your DD.  I think you are right that any kid her age can/will have outbursts, "tantrums", etc, but that your DDs seem extreme- both in behavior and in location (I know a lot of kids would balk at letting themselves get that far "gone" into a tantrum in public at her age,even if they can still go all-out at home). 

Maybe it would help to deal with her behavior in those more boring places like you would with a younger child?  I mean this as no disrespect to your DD- but her behavior in those places she thinks are boring (and that don't have external motivators for her) is a lot like 2-3 yr old behavior in a lot of kids.  Maybe you can think of some sorts of external motivators to put into play?  Maybe start out by trying to limit those sorts of trips (I know you alread are).... so that there are not more than one a day, and/or not over a certain length.  Since your DD has a language disorder, maybe do something visual... a sheet of paper divided into squares for each 5 minutes (or 3, or even 1) that you plan to be in the store, and put a sticker on the paper each time she finishes that amount of time with appropriate behavior (I'd start with maybe such a short interval of time that you can almost be sure taht she can experience some success)-- and then have her get some sort of external reward/positive consequence as a result of collecting the stickers... (a special snack, choosing a movie to watch at home, stoping at the playground... anything that is a good motivator for her- but hopefully something she can earn that will happen very quickly- not too far after the outing so that she can't easily link her good choices to the positive outcome).  Another thought- maybe video games don't keep her attention (they don't keep my NT 5 year olds attention either- she just isn't good enough at them to get involved for long) but how about letting her watch a video? (maybe on a portable DVD player or iPod type thing?)  would she like listening to audio books (we found all the dr. suess stories for sale or free as downloads online) with earphones while eating a snack?

Don't know if any of that will help.... just wanted to throw an idea or two out there....