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[Lillyth]

Hi. My name is Lillyth, and I just joined the boards after a friend of mine pointed out the obvious -- I need other parents who understand what I am going through.

My son is eight years old & his name is Adam. He has been Dxd ADD (Temporal Lobe & Ring of Fire Types), Asperger's Syndrome, Tourette's, & Temporal Lobe Epilepsy. He was abused by a caregiver for three years, and witnessed (as a small infant) domestic violence between my ex-husband and I.

We had him on Geodon for about six weeks, then took him off, as we are basically opposed to medication. Then last Friday, he choked a little girl at the park when she took his ball, and screamed at the girl's father when he tried to protect his daughter. After that, we decided to put him back on the Geodon, AND up the dosage. We will be upping it to two pills tomorrow. We'll see how that goes.

We have grounded him from all parks & television for a month, and taken him out of martial arts for two months. Our school has a carnival coming up this weekend, and we told him no carnival too.

I spoke to another parent (one of the few who is understanding) and his thought on the carnival is that we should take him for about an hour, and make him promise to be on his best behavior (no sugar) because we don't want him feeling too alienated. My friend's fear is that if we isolate him too much, it may have the opposite effect, and drive him further in the wrong direction. He said he needs to know he is still part of the community.

So my question is this:

What do you all think about the carnival situation? Should we let him go? Why or why not...

Oh, and what does "difficult child" stand for?

 

[smallworld]

Welcome! I'm glad you found us.

Sorry for all the questions, but your answers will help us help you.

What kind of doctor diagnosed him?
Is he getting interventions for AS -- speech, Occupational Therapist (OT), academic accommodations/services?
Has he seen a neuro for the epilepsy?
Why isn't he taking an anticonvulsant for his seizures?
Did you know that Temporal Lobe Epilepsy can affect emotional regulation and therefore cause aggressive behavior?
Did you know that Geodon can lower the seizure threshold, resulting in possibly more seizures?

To answer your question, if your difficult child (gift from God -- the challenging child who brought you here) has several disorders that are causing behavior problems, I strongly suspect harsh punishments will not change that. The first order of business is to set up appropriate interventions to help his behavior improve (medications, therapy, academic accommodations/services). Furthermore, any consequence to his behavior should be related to the situation. Perhaps a weekend missed at the park and then one-on-one supervision at the park thereafter would be more fitting.

Again, welcome.

 

[SRL]

I agree with Smallworld on the consequences. I also suggest that there are times when a child with Autism Spectrum Disorders (ASD) is unstable that you don't want to choose a consequence that will further destabilize them. ie if TV or video games serve a main role in keeping him calm and regulated, that's not the thing to go for at this time.

Have you contacted the prescribing doctor before deciding to start up the Geoden again? If not, that's something you need to do.

 

[Big Bad Kitty]

Hi and welcome.

I also agree with our moderators, harsh punishments might be counteractive. IN my opinion, the martial arts is probably something that you should keep him in. Vlso, a month grounding from anything will lose its effect on an 8YO rather quickly.

I say, choose one thing, be it the martial arts, the carnival, the park, or the television (and I agree that it should be the park since it is directly related) and ground him for a week, a day, a weekend, something like that. And then close supervision thereafter.

Welcome to our little corner of the world. You found a soft place to land and a safe place to talk.

 

[BusynMember]

I also don't believe your child was "bad" or that consequences will change him (nor no sugar, but that's JMO). Is he getting any Autism Spectrum Disorders (ASD) interventions in school or the community? If not, you should look into it as a child on the spectrum who does not get specific help can be VERY frustrated and hurt other people. My son is going to somebody who only works with Aspies, and it's been great for him. Regular psychologists don't work that well for Autism Spectrum Disorders (ASD). Tourettes and epilepsy can also cause behavior problems, so I hope he is getting the kind of help he needs for those disorders. I'm surprised he's not on an anti-seizure medication. It doesn't help that he witnessed abuse. He probably needs help on many fronts--interventions for the Autism Spectrum Disorders (ASD), medical help for epilepsy and Tourettes, and maybe a psychologist to deal with all these issues plus the abuse. This won't be an easy fix.
If he is unstable, I'd treat his disorders. You can punish him, but I seriously doubt he will or can change right now. Sometimes kids do need medication, whehter we like it or not. We found, in our case, that our son is much better off medicaton, however he has never been violent. I would not personally put a violent child into martial arts. If they "lose it" even once, they know how to kill somebody. I don't like giving violent kids the means to do this and am not sure it is good for our kids, even though it can be very good for our easy child (non-difficult child) kids.
What kind of interventions is your child receiving? Welcome to the board

 

[busywend]

Welcome Lillyth! Your friend made a good suggestion.

I, too, feel that your punishment is too harsh for a child with issues. It is really hard for them to be good. They have to work at it.

His actions surely warrant a big time change. But, I do not think no TV for a month and no carnival will actually teach the no violence lesson. I do think there needs to be a consequence, perhaps a week with no TV and be sure to provide constructive things for him to do or he will just get into more trouble. Maybe he should visit an anger management class during the no TV week. Maybe they can set him up with some sort of class for children.
Maybe he should write 500 times, "I will keep my hands to myself."

Get creative in finding ways to make the message stick. These kids don't learn from 'no TV' punishments. They just get more frustrated. That is of course, from my own experiences.

 

[Lillyth]

Welcome! I'm glad you found us.

Sorry for all the questions, but your answers will help us help you.

What kind of doctor diagnosed him?
Is he getting interventions for AS -- speech, Occupational Therapist (OT), academic accommodations/services?
Has he seen a neuro for the epilepsy?
Why isn't he taking an anticonvulsant for his seizures?
Did you know that Temporal Lobe Epilepsy can affect emotional regulation and therefore cause aggressive behavior?
Did you know that Geodon can lower the seizure threshold, resulting in possibly more seizures?

To answer your question, if your difficult child (gift from God -- the challenging child who brought you here) has several disorders that are causing behavior problems, I strongly suspect harsh punishments will not change that. The first order of business is to set up appropriate interventions to help his behavior improve (medications, therapy, academic accommodations/services). Furthermore, any consequence to his behavior should be related to the situation. Perhaps a weekend missed at the park and then one-on-one supervision at the park thereafter would be more fitting.

Again, welcome.

He was Dxd by the Amen Clinics in Fairfield, CA. They used SPECT scans and the intake process to diagnosis him.

He is not currently receiving any services for Autism Spectrum Disorders (ASD). The school district is fighting us on the diagnosis. IDEA requires MANY more services for anyone on the Autism Spectrum, and our school system is broke, so, of course they didn't find him to have Autism Spectrum Disorders (ASD). He isn't yet two years behind in school, so they don't want to have to pay for specialists to come in.

The head of SpEd in the district has a prejudice against the Amen Clinics, saying that "everyone" they see coming out of there has a diagnosis of ADD & Asperger's. Nevermind the fact that THOSE are the people who are going to them. (I have endometriosis, and I see a specialist out of Los Gatos. People fly from all over the world to see him. 99% of his patients are found to have endo -- why? Because that is who seeks him out!) I can certainly see her point, but I don't think anyone goes and drops $3,500 (insurance does not cover it) unless their child has some form of uncontrollable behavior.

We are currently looking into getting a second diagnosis from a more "reputable" place, like a hospital.

The Aspie diagnosis is the first thing anyone has said that has made any sense whatsoever to me. I read Freaks, Geeks, and Asperger's Syndrome, visited a local support group, and it was like this lightbulb went off in my head -- these kids are JUST like mine. Down to the maze of frickin' strings he had tied all over his room!

He has not seen a neuro yet.

I don't know why he is not taking an anti-convulsant -- presumably because the doctor knows we are anti-medications, OR because a neuro would prescribe that and we haven't seen one. I also was under the impression that the simple or complex seizures (not grand mal or even petit mal) weren't that big a deal. I mean, periods of deja vu and olifactory halucinations for a few seconds don't seem like that big a deal to me, but then again, I've had strong periods of deja vu my whole life too...

While I didn't know it *quite* like that (about the TLE & violent behavior) I sort of figured it maybe made his brain "short circut" in instances like that, contributing to the violence.

I did not know that about the Geodon.

I am currently fighting our school district on his diagnosis. (They are notorious for not accepting outside evaluations).

As for the TV, my husband and I decided to take it away because we felt that the things he was watching on it were effecting his behavior. Drake and Josh are hardly good role models.

My husband is also doing EFT (Emotional Freedom Techniques) with him on a nightly basis, so we'll see how that works out.

Hopefully my answers will shed some light on the subject a little.

As for the consequences, the sucky thing is that we have now committed to this course of action, and if we go back on our word, then Adam learns that no one means it when the consequences are dolled out. At least that is my take on it.

We can always alter our next batch of consequences, but I will certainly think about a way to 'backtrack' without losing authority or credibility.

Thank you for your reply...

 

[BusynMember]

You don't have to agree, but I'd go beyond Amen for a diagnoses. It's just not a mainstream place and a lot of doctors don't don't consider a SPECT scan valid. That's why insurance doesn't cover it. I don't trust them either, so I'm biased. You can not diagnose Autism Spectrum Disorders (ASD) on a scan--my son has it. Anyway, I wouldn't trust his diagnosis. to be based on a scan.
You can do what you want---not trying to talk you into anything, but I'd see a regular neuropsychologist. I wouldn't trust Amen. Your son needs help for all his problems, not just ADD. If anything, that's the least important of his problems. If he has Autism Spectrum Disorders (ASD), a private neuropsychologist should find it without any scans. JMO Good luck.

 

[Lillyth]

Welcome! I'm glad you found us.

Did you know that Geodon can lower the seizure threshold, resulting in possibly more seizures?

Just spoke with the prescribing doctor, and he said that while yes, there is a small risk of this, my son's SPECT scans to do indicate that this would be a problem for him, based on the specific areas affected (he said there is a specific area of the brain that does this, and that that portion of my son's brain is not effected).

 

[Pookybear66]

Liilyth,
Welcome first of all! Second, I agree with the things others have said. Third, I would get the book-The Explosive Child. It may or may not help (I just started reading it myself) but it basically starts out saying that these kids are just reacting to their frustration levels and not doing violent things on purpose. Therefore, if they are doing them on purpose, then punishing them for the things they do is counterproductive because it only makes them more frustrated.
I think that the martial arts may provide a safe outlet for the agression but I don't know your kid personally so thats your call. I agree he needs extra supervision when playing to ward off the possibility of harming another child. Do you know what caused him to react this way? Is he capable of discussing things with you to work out a consequence together?
I do agree that going backwards and removing consequences you've already put in place seems like NOT the right thing to do. However, if they won't work in the long run then whats the difference.
Go to the carnival. Try to have a fun day. Keep an eye out for anything that will "set him off" and leave if there is any problem. Review what made the day good or bad and build on that for the next time.
Good luck!

 

[Lillyth]

I agree with Smallworld on the consequences. I also suggest that there are times when a child with Autism Spectrum Disorders (ASD) is unstable that you don't want to choose a consequence that will further destabilize them. ie if TV or video games serve a main role in keeping him calm and regulated, that's not the thing to go for at this time.

Have you contacted the prescribing doctor before deciding to start up the Geoden again? If not, that's something you need to do.

I think we screwed up BAD last year doing just that. We took his birthday away from him (he still got presents and a cake with us, but no party at school, and no one coming over). What we didn't take into account is that it was his first birthday without his grandfather (he died last year), and he just lost it when no one came over for a birthday party. And not lost it in a violent way, but like something inside him broke. I hadn't heard a wail like that come out of his mouth since his grandfather died... It just broke my heart to hear it...

I just got off the phone with the prescribing doctor. He checked in, made sure Adam wasn't on any other medications, and gave the go-ahead to up the dose. So we'll be doing that tonight. We'll see how that goes.

Honestly I am just torn. It makes me sick to my stomach thinking I am medicating my child. But on the other hand, he really cannot control himself when he gets mad, and I need to keep him from hurting anyone, both for the safety of others AND for himself. He needs to not feel so out of control, which I know he does...

I just hate this. It is very unsettling to be theoretically & philosophically opposed to something, yet in practically left with no other real alternative...

 

[klmno]

Admittedly, I haven't read all of this- sorry- but the consequences do sound pretty severe to me for this situation. I once used a consequence for something that meant I had to revoke a priviledge for my son that I actuallly had thought would be good for him to have. I asked the dr what I should do because I had backed myself into a corner with that one- he said to give difficult child a chance to earn it back. So, maybe you could do that- tell him if he does extra homowork and chores, he earns it back, or trade a weekend for being grounded.

 

[Lillyth]

I also don't believe your child was "bad" or that consequences will change him (nor no sugar, but that's JMO). Is he getting any Autism Spectrum Disorders (ASD) interventions in school or the community? If not, you should look into it as a child on the spectrum who does not get specific help can be VERY frustrated and hurt other people. My son is going to somebody who only works with Aspies, and it's been great for him. Regular psychologists don't work that well for Autism Spectrum Disorders (ASD). Tourettes and epilepsy can also cause behavior problems, so I hope he is getting the kind of help he needs for those disorders. I'm surprised he's not on an anti-seizure medication. It doesn't help that he witnessed abuse. He probably needs help on many fronts--interventions for the Autism Spectrum Disorders (ASD), medical help for epilepsy and Tourettes, and maybe a psychologist to deal with all these issues plus the abuse. This won't be an easy fix.
If he is unstable, I'd treat his disorders. You can punish him, but I seriously doubt he will or can change right now. Sometimes kids do need medication, whehter we like it or not. We found, in our case, that our son is much better off medicaton, however he has never been violent. I would not personally put a violent child into martial arts. If they "lose it" even once, they know how to kill somebody. I don't like giving violent kids the means to do this and am not sure it is good for our kids, even though it can be very good for our easy child (non-difficult child) kids.
What kind of interventions is your child receiving? Welcome to the board

He's not getting ANY Autism Spectrum Disorders (ASD) interventions - at all. The school does not recognize his diagnosis (I've got calls into several places for a second neuropsychologist to diagnosis him), and his current therapist does *not* work with Aspies, and and repeatedly stated she is NOT an expert in Asperger's.

How do I go about finding someone who specifically works with Aspies? I'm in San Francisco if that helps...

As for the martial arts, oddly enough, most of his outbursts seem to be repeats of his abuse, not the stuff they learn in class (they do NOT teach children to choke). When he is in class, he uses his brain to spar, when he is angry, it's like his brain doesn't work, and very, very rarely do any of his martial arts moves come out.

I think also knowing this stuff gives him a sense of security - like if someone tried to abuse him again, he'd be able to defend himself, which, I can certainly relate to as a rape victim who takes martial arts herself...

Oh, and my child sees a Behavioral Therapist who specializes in grief counseling (Adam's grandfather died last year - they were very close) once every other week or so (or once a week sometimes) but if he does indeed need someone who works with Aspies, then this probably isn't doing much good.

 

[Lillyth]

You don't have to agree, but I'd go beyond Amen for a diagnoses. It's just not a mainstream place and a lot of doctors don't don't consider a SPECT scan valid. That's why insurance doesn't cover it. I don't trust them either, so I'm biased. You can not diagnose Autism Spectrum Disorders (ASD) on a scan--my son has it. Anyway, I wouldn't trust his diagnosis. to be based on a scan.
You can do what you want---not trying to talk you into anything, but I'd see a regular neuropsychologist. I wouldn't trust Amen. Your son needs help for all his problems, not just ADD. If anything, that's the least important of his problems. If he has Autism Spectrum Disorders (ASD), a private neuropsychologist should find it without any scans. JMO Good luck.

We are going to need to go beyond them if we want services for my son.

I happen to love the Amen Clinics, but I know not everyone does. As far as I know, he was diagnosed with Autism Spectrum Disorders (ASD) on the strength of our intake, not on the SPECT. Meaning, the Dr. never pointed to a place on the scan and said "Here's his Asperger's" -- he did that with the ADD, of course, but not with the Autism Spectrum Disorders (ASD). That was based purely on the DSM.

I agree that the ADD is the least of his problems - or isn't if I don't care how much school work he gets done. which, at this point - I kinda don't. That's not to say it won't be important somewhere down the line, but really, in the scheme of things, it's not my biggest fish to fry at the moment...

 

[BusynMember]

Hi again
If you want to get services, you'll probably have to go private to get the diagnosis. Our school was very unhelpful...like yours, they didn't want to spend too much $$$. So they wouldn't diagnose him. We took him to a neuropsychologist. The good thing about that is t hat it's "mainstream" and they can't throw in your face that "everyone who sees ____ has this and that." When our school district wouldn't do what we wanted for our son, we called the Dept. of Public Education (it's usually located in the capital city). There was an Autism Spectrum Disorders (ASD) advocate...haha! THAT is who helped us. The school listened to them and we got what we wanted the next day, after they called. And we'd been haggling for months before that. I hate how they make us fight this way, but often they do. It's very maddening.

 

[Lillyth]

Hi again
If you want to get services, you'll probably have to go private to get the diagnosis. Our school was very unhelpful...like yours, they didn't want to spend too much $$$. So they wouldn't diagnose him. We took him to a neuropsychologist. The good thing about that is t hat it's "mainstream" and they can't throw in your face that "everyone who sees ____ has this and that." When our school district wouldn't do what we wanted for our son, we called the Dept. of Public Education (it's usually located in the capital city). There was an Autism Spectrum Disorders (ASD) advocate...haha! THAT is who helped us. The school listened to them and we got what we wanted the next day, after they called. And we'd been haggling for months before that. I hate how they make us fight this way, but often they do. It's very maddening.

OMG!!! You are freaking BRILLIANT!!!

(Off to find the Autism Spectrum Disorders (ASD) Advocate at the Dept. of Pub Ed!)

 

[flutterbee]

Under IDEA 2004, a student does not have to fail before receiving Special Education services. IOW, the SD (school district) stating that he's not yet 2 years behind so they aren't providing services is bogus. The idea behind IDEA 2004, besides identifying children with disabilities, is to start interventions BEFORE they start to fail.

You may want to post your school problems on the Special Education forum.

Welcome to the board.

 

[Lillyth]

Under IDEA 2004, a student does not have to fail before receiving Special Education services. IOW, the SD (school district) stating that he's not yet 2 years behind so they aren't providing services is bogus. The idea behind IDEA 2004, besides identifying children with disabilities, is to start interventions BEFORE they start to fail.

You may want to post your school problems on the Special Education forum.

Welcome to the board.

The problem is that he tests just fine. He only completes 25% of his work, and even that is like pulling teeth. All the moms at the school said their children were not eligible for help until they were two years behind. It's that 7% rule thingie.

BUT if the district finds they have no Learning Disability (LD), then they do not qualify under IDEA, see?

That seems to be their game.

 

[BusynMember]

Lilyth, don't let them do that to you. They tried to do that to me. First we got a private evaluation because the school said, "he's not autistic." Yeah, right. OK, so we got the diagnosis. THAT made all the difference. Then I called a mom who has a son with Aspergers. I was in tears. She told me to call the Dept. of Public Ed and ask for the Special Needs advocate and I did. They called the school and pronto! My son got what we asked for. BUT...you will need a diagnosis first. Autism Spectrum Disorders (ASD) interventions are specific (and very helpful). I can't tell you how much it helped my son. Our home school had no services so they have to bus him to the next district over and he loves school, does well, even made friends. I'm really pleased. I would not trust the School District further than I could throw them. Sadly, their interest lies in saving $$$, not helping the kids. And they don't really know what is wrong with our kids. We have to really kick tail to get services.
I think posting on Special Education 101 would also help you. They rock over there
I hope I helped you. My mission in life is to help moms NOT make the mistakes WE made because we were so clueless and easily intimidated. Your son is lucky to have you for a mom. I can tell you are a warror mom

 

[Lillyth]

Lilyth, don't let them do that to you. They tried to do that to me. First we got a private evaluation because the school said, "he's not autistic." Yeah, right. OK, so we got the diagnosis. THAT made all the difference. Then I called a mom who has a son with Aspergers. I was in tears. She told me to call the Dept. of Public Ed and ask for the Special Needs advocate and I did. They called the school and pronto! My son got what we asked for. BUT...you will need a diagnosis first. Autism Spectrum Disorders (ASD) interventions are specific (and very helpful). I can't tell you how much it helped my son. Our home school had no services so they have to bus him to the next district over and he loves school, does well, even made friends. I'm really pleased. I would not trust the School District further than I could throw them. Sadly, their interest lies in saving $$$, not helping the kids. And they don't really know what is wrong with our kids. We have to really kick tail to get services.
I think posting on Special Education 101 would also help you. They rock over there
I hope I helped you. My mission in life is to help moms NOT make the mistakes WE made because we were so clueless and easily intimidated. Your son is lucky to have you for a mom. I can tell you are a warror mom

You helped me more than you will ever know...

I just had the most wonderful conversation with a woman named Maria - we were on the phone for AN HOUR!!! She is mailing me a complaint form.

Say what you want about Amen Clinic, it is still a medical diagnosis, and Maria was flabbergasted that someone who is not a medical doctor dared to challenge my medical diagnosis.

She told me I need to request an IEE immediately.

I will do this on Monday when I find out if they try to deny me services because I only signed off on part of it. (I know they are not supposed to, but do they ever do what they are supposed to?)

I will certainly post over on SpEd 101. Probably won't be today, given my schedule, but I will do it...

Thank you again - it was good to hear from someone at the state level that they shouldn't be discounting my medical diagnosis...