Power struggles and talking back -- need suggestions?

[smallworld]

Nateisnuts, that's a great suggestion. When my kids were little, they loved holding their own plastic keys. But a 6-year-old might really enjoy having her own keychain. You could even get blank "keys" to put on the keychain.

Laurensmyprincess, thinking creatively (like the suggestion above) may be one way to sidestep power struggles. In addition to The Explosive Child, I've found the "Positive Discipline" books by Jane Nelsen have a lot of information about avoiding power struggles.

 

[Sara PA]

The medications thing -- Tegretol and Lamictal are mood stabililzers. Neurontin can cause some issues with behavior. I've read that it isn't used that much for kids because it can cause anger, aggression, emotional outbursts -- behavioral issues. If the Tegretol and Lamictal alone aren't controlling the seizures and you do need three, maybe it would help switch the Neurontin to another one.

Topamax is good but it can be incredibly dulling. Considering the degree of dulling I had on Tegretol, I wouldn't advise using both.

 

[laurensmyprincess]

Sara, I agree...I have heard a little that gabapentin (neurontin) can cause behaviour issues. I would love to get her off at least one of these drugs, but the neuro will probably say to up the other two since she has had breakthrough seizures when on the other 2 alone.

Always a guessing game....

 

[Sara PA]

FWIW, I have a friend who has uncontrolled TLE for over 45 years when he started on the Lamictal/Topamax combo. For the first time since his seizures started they were controlled. Lamictal was the best he tried for monotherapy but he needed the Topamax with it. Unfortunately he has extreme dulling and depression as a side effect to the Topamax.

Maybe a tiny dose of the Topamax instead of the Neurontin?

 

[BusynMember]

I have one last suggestion, hon. If ANYONE can give you a break, take time out for YOU. I remember sleepless nights when my kiddo was two and three and never slept. I was so grateful when ANYONE would watch him so I could nap or take a long walk or a bubble bath with a scented candle or go to Borders. We are SO MUCH better able to cope with our children when we are the best we can be. I didn't have a lot of help--friends had their own lives and family wasn't helpful and hub worked, BUT any little morsel I got from anybody was sooooooooooo appreciated. I hope you have a support system. I do strongly believe that your daughter will improve greatly with the right help. My son is doing really well. Now that I have so much "Me" time, I'm not sure what to do with myself...lol. (((Hugs to you both)))

 

[1234567]

I think the fact that you are here asking for help shows that you're a great parent who has the needs of your child as your foremost concern!

I've learned a lot just by lurking here and words of advice.

Obviously what works for one kid might not work for another, so we just kind of do what we can do and find what works for us.

Of course, with your daughter's medical issues, her situation is complicated further.

I hope things get better for you soon!

 

[Marguerite]

I think that's a problem for all of us - we try to be good parents, but we have children with medical/other issues which make the picture even more complicated.

I was "arguing" with my best friend this morning. She was giving me an example of a 9 year old boy who had previously been overweight, got taunted for it at school, lost weight and was now obsessing about the fear of getting fat again. His mother took him to the doctor to ask about strategies to help, and the doctor immediately reached for a prescription pad to prescribe Zoloft.
I said, "I can understand that," and almost got my head bitten off. The mother had refused all medication and instead wanted therapies, techniques etc. The doctor was saying, "but he needs to reduce his anxiety."
I could see both viewpoints, but I also remembered - we know two, possible three people who have died in the last year, who were recently put on Zoloft and who suicided (or "accidentally fell") soon after.

I know Zoloft is indicated as a suicide risk factor. But I also know how much it has helped difficult child 1.

The thing is, there are ways to keep people safe, which should have been done in those cases where the patients were reacting badly to the Zoloft. In both those deaths the doctor was told of the suicidal thoughts but did nothing. That was wrong. And it was perhaps also wrong for the doctor to insist that prescribing Zoloft was the first course of attack.

But some things work well for some people, and can be ghastly for other people.

difficult child 1 takes Zoloft and it helps his anxiety as well as his Obsessive Compulsive Disorder (OCD). He tried stopping the Zoloft and his Obsessive Compulsive Disorder (OCD) became worse, even when weaning off incredibly slowly.

But difficult child 3 - couldn't take Zoloft. It did help him - but he wasn't sleeping, and the problems we got from his lack of sleep were far worse than the initial problems before the medications. He was only on Zoloft for three days!

So, lauren'smyprincess (hey, does that make you a queen?), I said before - YOU are the one on the spot. You are the one who has to listen to all the advice medically about your daughter's condition, and make the final decisions. It is so hard sometimes, because we often feel we have to become medical experts in order to be as fully informed as we feel we need to be.

There are lots of brains here who have already been down that road. Pick away, but in the end - it has to come down to you and your decision.

A thought on those keys - blanks are good. You can get some colourful ones, too, in anodised aluminium. But are the keys always an issue, or were they just the example THIS time?

I also meant to mention, on the subject of the digital camera - we let difficult child 3 use the camera, but under very controlled conditions. We suggested he take photos of flowers and birds in our garden. Also, tiny insects, close-ups of small spiders, that sort of thing. It meant he had to learn patience (a slight breeze in close-up moves the flowers to a blur). The garden meant that even if he dropped the camera, it only had a couple of feet to fall, onto soft earth. We always made him put the strap round his wrist, anyway.

And you know what? He had natural talent to begin with. He had a burning desire to take the photo that he could see was waiting, in front of him, to be taken. So we now have some wonderful photos. Yes, he's taken dud photos but as time goes on he is getting very good. Even his earliest photos - an African daisy, with a tiny green spider crouched in the centre, waiting for a stray aphid. A grevillea being visited by bees, with one bee captured mid-flight, as if motionless. We took a mist spray bottle of water into the garden and sprayed the spider webs to make them sparkle with dewdrops. And a tiny green tree frog that was clinging to our sliding door on a cold wet night - difficult child 3 used close-up plus flash to get some lovely photos of it.

We use his photos now in our annual Christmas card to family. He's been taking photos for years now, ever since our first digital camera. We took a chance, watched him carefully, used it as a reward (obviously you can't allow her to use the camera if she's still grabbing and running away - if she behaves herself, this is a good reward once you feel you can trust her).

I'll have to set up a photobucket account so you can see some of difficult child 3's photos.

Marg

 

[SRL]

Yes, the epilepsy can absolutely affect behavior. It is pretty textbook unfortunately. Especially temporal lobe onset epilepsy since the temporal lobe is the powerhouse of emotions. However, even with kids with E, the same strategies like Collabrative problem solving are used. Our hospital recommends these strategies for kids like mine. I need to go out and get the book....I read it a while ago. But in the meantime, looking for some guidance.

Other than her epilepsy, she developed right on time with her fine and gross motor and communication skills. She is verbal, but she has word finding and short term memory issues, again because of where the epilepsy is originating. She is more immature than other 6 year olds her age without a doubt. I would say that she acts like a 3 year old in her behaviours. She is also not very good with other children. She is okay one on one, but gets bossy, and just does not play well in larger groups; almost causing trouble purposely to get attention. I think the other kids are starting to realize that she is different and it really hurts me to watch it.
.

One suggestion that I have is to look into what are called social stories. These are illustrated stories that teach appropriate behavior for a sitaution and can be found or purchased for typical situations or made at home for specific situations such as you describe. Typically a social story might show the situation, show not appropriate behavior and then show appropriate behavior. They're frequently used for children who just aren't naturally picking up on how they should act in a certain situation. For instance, parents and teachers of kids with Autism might use them to teach appropriate social interaction in a specific situation. Since your little girlie does have a pretty wide gap between age and emotional behaviors those would be something to look into.

Training for socially appropriate actions can also be worked into her IEP at school. Lots of good help there potentially if you can get it.

Is she getting speech therapy for the processing issues? Personally I would be making that a huge priority.

 

[Marguerite]

Good idea, SRL.

There used to be a book series called "Let's Talk About..." and each book dealt with a different issue, such as "Let's Talk About Sharing", or "Let's Talk About Bullying".

Here is a link to Amazon:
[ame="http://www.amazon.com/Lets-Talk-About-Being-Helpful/dp/0590623850"]Amazon.com: Let's Talk About Being Helpful (Let's Talk About): Joy Wilt Berry, Maggie Smith: Books[/ame]

difficult child 3 found a stack of these books at our church, in the back of a cupboard. He read them over and over, almost memorised them. While not strictly social stories, they actually were in a style which worked better for him because they didn't have that feeling to them of "You just did the wrong thing so now you have to read a story about it."

The other really good thing - the more he read, the better his language skills became. Even if a kid isn't reading well, having someone read to them is really helpful in so many ways. It helps with social interaction, it provides a quiet together time, it helps the child with their reading skills if they're also looking at the page as you're reading - so many things on top of the message of each book itself.

YOur daughter has a lot of stuff you're not going to be able to fix - not at the moment. But if you can help her with what she CAN learn, it's a big start.

Marg

 

[laurensmyprincess]

Is she getting speech therapy for the processing issues? Personally I would be making that a huge priority?

Yes, she is getting speech therapy for almost 8 months now. It has been helping.

The social stories too are a great idea.

Last night we had another rage. She has now begun (just over the last two weeks) kicking, biting, hitting, spitting, saying mean things to us when we try to discipline her. She has NEVER raged this way before. I mean we don't even know where this has all come from? Can it just show up out of the blue like that? I mean, we have always had the hyperactivity, districatibility, inattention, non compliance (to a degree), but never ever have we had the aggressive hostile rages like we re seeing now. I am trying hard to use the Ross Greene strategies, but it is so hard sometimes with her.

I do think too, that all the medications she is on is aggravating her behavior. The big difference lately is that we have gone up 600mg on the gabapentin in the last 4 weeks or so. As Sara said, gaba can aggravate behaviour. The strange thing is though, she was on lower doses of gaba since January this year, so could the increase just have sent her over the top??

I will be talking to the neuro to see if we can dump or reduce one of them, while still maintaining seizure control (go on the lowest dose possible with optimal seizure control).

 

[SRL]

Can you remind us of what's been done evaluationwise for her?

 

[laurensmyprincess]

She has had a neuropsychologist assessment prior to her surgery (one year ago). It was more geared to understanding learning and language areas and cognitive functioning so they could see what area of the brain was her dominant one prior to surgery (to determine if there might be any deficits after surgery). It showed she had moderate delays in language processing for example. It didn't evaulate for psychiatric issues, I don't think. At least we didnt get any info on that from the report. Does that make sense?

She is seeing a pediatric psychiatrist on July 24th who works with the epilepsy team at the Children's hospital. I am really hopeful about this appointment.

 

[Sara PA]

The higher gaba (Neurontin) is likely the problem.

 

[SRL]

laurensmyprincess, I want to remind you that we are all parents here --not medical doctors--so please take all suggestions regarding medication with that in mind. We don't advise discontinuing or reducing dosages without the advice of your child's physician.

 

[Marguerite]

Good point, SRL. I think Laurensmyprincess has taken that on board, we've all been kicking a few ideas around with suggestions to discuss it all with the doctors.

Laurensmyprincess, with the Explosive Child" methods, you need to get organised at least enough to work out with husband (you did say he sometimes 'loses it' - that can undermine a lot of good progress, at least where his relationship with difficult child is concerned) exactly what it is you want to work on, and what you're not even going to touch. And you do need to stick to it. It also helps to have a strategy in place between you, so you know what to do in the event difficult child's behaviour in a Basket C area moves into unsafe (which makes it Basket A).

Once you have reduced your Basket B to only a couple of items, and both recognised that Basket A is VERY small (at the moment, all that should be in Basket A is IMMEDIATE safety - you would grab her to stop her running onto the road in front of a truck, but otherwise not interfere at all if a meltdown is likely) then you should start seeing some improvement.

Has husband been able to read "Explosive Child"? Don't be hard on him if he can't get into it for whatever reason - it doesn't mean he's not motivated to help. My husband couldn't either, so what I did - and it really helped me consolidate the information in my own head - I explained it to him myself. NOT in front of difficult child, of course! I also wrote a summary of it, which I shared with difficult child 3's teachers and anyone else who had dealings with him.

Her explosive behaviour will continue, but slowly should subside especially with those using these techniques. If there are issues connected more directly to her disability and/or medications, these will complicate the picture. Where there can continue to be problems will be mainly with people trying to be overly strict (old methods) with her, and her resenting this. You may even find some of these people asking you to step in and discipline her (after they have stirred her up for you). You need to be strong when this happens. It's your judgement call, but your connection with your child is more important than soothing the feelings of a more distant friend or relative who would not follow your requested discipline methods. But sometimes you can adapt and work out a compromise.

Example: difficult child 3 was sitting next to mother in law in the car. mother in law was verbally 'teasing' difficult child 3, something we'd asked her repeatedly not to do. She has a history of doing this (to husband as a kid, too). Mind games, emotional blackmail as entertainment, often followed by her protest, "But I was only joking! He's got to learn to take a joke."
difficult child 3 finally responded in a manner mother in law deemed as impolite (although it took a lot of time and he HAD been goaded). mother in law loudly said, "You shouldn't talk to your grandmother like that!" but was glaring in our direction, challenging us to defend her honour and discipline the rude little beast.
I can't remember exactly what we said, but it was along the lines of, "I'm sorry, mother in law - maybe he was only joking!"

Later when we got home and mother in law had been dropped off at her house, we congratulated difficult child 3 on holding his temper for so long, but told him to try to be even more patient with his grandmother in future.
It was a useful lesson for difficult child 3, because he had been stewing about it for the rest of the trip home, but our response to him showed that we DID understand (and sympathise) and we knew that mother in law was setting a double standard for behaviour, and that this was unfair, but that LIFE is unfair and it's a hard lesson to learn. difficult child 3 had already been punishing himself - we didn't have to add to it.

Kids do understand this stuff. Maybe some difficult children take longer to learn it, though.
My nephew was in the car with his mother when they stopped to buy a sandwich. Their father had expressly forbidden the family to eat in the car, even though he did it all the time. He believed that his wife and his kids would drop food in the car and leave it untidy. So my sister said to her son, "Daddy would be cross with us if he knew we were eating in the car."
Her son, all of six years old, said, "Don't worry, Mummy. That's just Daddy's way. We will be clean and tidy, I am a big boy now. Daddy's just being silly."

Marg

 

[laurensmyprincess]

Absolutely would never play around with the medications until the neuro gives his ok. I have been at this medication game long enough to know that this isn't tylenol we are dealing with! Thanks for your concern SRL.