I guess I am that person who only shows up when I need something. Emergency again.

[firehorsewoman]

You are right. This is so unfair and a living hell that none of you deserves. I'm sorry that you are not getting the help you need from the people that should in the very least be trying to help you.

I know that you will not give up so, I send you strength and prayers to continue trying to protect your son as well as other children.

 

[Anxworrier]

((((((Hugs)))))) I don't have advice but wanted you to know i will be sending out positive thoughts your way! You are brave and strong and I admire you!

 

[Otto von Bismark]

Thank you, everyone. No, I have not tried county services but my husband and I will talk about it. I am afraid that he will be labeled as something that will last for life before he even commits a crime....and we still have the autism component that makes me second guess everything he does. Sometimes he does something terribly odd, and then when I really get to the bottom of why he did what he did....it was some autism-logic, if you know what I mean, and less harmful than it seemed on the surface. I hate to stamp him forever just by making an inquiry.

One good thing: our oldest daughter who is away at college, has a lovely boyfriend who is in school down by us. We have known his family for a long time and he is a delightful young man. He heard that our difficult child was struggling, and offered to step in and do a "Big Brother" thing and come up a few times a month and take him out somewhere fun. difficult child needs this. We have been trying for two years to get a Big Brother through the program, but they are full. So, the young man does not know details of what is going on. Daughter is afraid that it will make him run, because they are talking marriage down the road, and she is worried that this is something genetic that will scare off boyfriend. These dynamics are so far-reaching. They affect the whole family, don't they? My difficult child really admires this young man, by the way.

I have to laugh when I hear parents of other kids complaining that they caught their kid up late playing video games or texting and they are all bent and worried about coming up with the right "consequence." Ha ha ha ha.

 

[susiestar]

Otto, what do they want a neurologist to test your son for? Clearly autism isn't usually treated by a neuro, and most health care resources are aware of this. Are they wondering if he has seizures that are contributing, which would mean that you want the neuro to do an eeg? Or do they think there is some form of brain damage or structural problem which would mean an mri or pet scan or cat scan? Until you know what you are asking the neuro to test for, it is going to be hard to figure out what the neuro is expected to actually do. It might be helpful to ask the deviancy program what the neuro is supposed to be doing/treating, and to ask them for a referral to a neuro that they work with.

I know you don't want anyone else to be hurt. Sadly, you are not going to find resources to treat him until/unless he actually does somethng to someone. In addition to that ugly realty, you are only one person, and even with 2 of you (mom and you), you cannot control a teenager's sexuality. I know so many parents who thought they could supervise their kids well enough to prevent problems and every one of them learned the hard way that they couldn't. Often they learned this when their daughter or their son's girlfriend ended up pregnant. Sexuality is one of the most primitive, driving urges that a human has. It ranks right up their with eating and breathing. All three are basic survival instincts, and at some point he is going to end up acting on his sexual urges. Not a fun thing to contemplate, given your son's sexual preferences, but it is still going to happen most likely.

If you throw away your health to keep him from hurting someone, then you are not going to be able to do anything for anyone for a long time. I know it feels like you are throwing another child under the bus, so to speak. Reality is that your difficult child hasn't actually hurt anyone, but in a few years you won't be able to control anything because he will be a legal adult. in my opinion it would be better to catch him in the act and get the police or county involved at that point so that he CAN get help. Because very few programs exist and those that do mostly need you to have committed an offense to receive treatment.

It is bassackward but it is the ONLY system we have, so you have to figure a way to play the system to get what you want. Ask the cops what would consitute an offense. Ask the deviancy program people the same thing. If you haven't had a neuropsychologist evaluation done, then go ahead and get one scheduled. That may be the info the program is needed and they are not asking for ti the right way.

I really wish I could give a better view of the realities of your situation. Sadly, this is what it is. And it hoovers mightily.

 

[InsaneCdn]

Without knowing what is driving the behavior... it's a tough call. But... if he's Autism Spectrum Disorders (ASD) or Aspie... could this just be a "topic" that he got into and now it's "the" interest? i.e. can you use his Autism Spectrum Disorders (ASD)/Aspie traits to move to a different - and safer - key interest?

 

[buddy]

Reminds me of when q was little and learned that meat was animal muscle so asked in school what human muscle tasted like. An aide got weirded out and talked to him about it. Well then it was something that got attention. Same thing happened when he gets too close or hugs without permission. Someone said if your privates touch a girl then she might get you in trouble. So, then saying he was going to do that was a huge way to get someone to talk to him. Neither of those issues stayed issues at all. He moves from thing to thing and right now its hitting walls. But given this is sticking for your son and he seems to talk beyond what he just heard about from others you're smart to pay attention. If he has autism a traditional mental health program may not even work. Q has some serious behaviors but he is serviced under brain injury and autism and even sexual issues would be worked on through the company we use that works with autism. Maybe ask for case management through whatever they call their department that works with autism. Even if he has a dual diagnosis the autism piece can't be ignored in my humble opinion. Just shouldn't be so hard to get services ....so sorry for you.

 

[Otto von Bismark]

Otto, what do they want a neurologist to test your son for? Clearly autism isn't usually treated by a neuro, and most health care resources are aware of this. Are they wondering if he has seizures that are contributing

Well, he had a few cyanotic episodes at birth...spent a few days in NICU because he stopped breathing and turned purple a few times. Then, he had a shot reaction with seizures and ER visit and 106 fever. Then when he was around 7 or 8 he would hold his breath and Valsalva maneuver himself until he saw stars and passed out. Those are a few things that have always concerned me.

Also, because my husband has seen one of his eyes act like there is some nystagmus going on. Only one, though, and I have never seen it. And my hubby works with CP kids and he is like a CP whisperer --he can find it before docs do. He has said all along that something is weird with difficult child's gait and coordination, but it is so mild he has been under the radar and we just chalked it up to Asperger's, like we did with so many other things.

Also, because difficult child's neuropsychologist evaluation 1 year ago came out so weird that people thought the testing was bad, and this latest therapist agrees that we should have neurologist testing because his impulse control is almost nothing, and his flat affect is really pronounced, and he has a history of oxygen deprivation.

Just so you know, my health is good -- and sorry about the reference here -- but I put the oxygen mask on myself first these days....I go to the gym five days a week and am following a challenging program with specific goals in mind.

I will make the suggested calls. I have a relative in the county PD, who begs me to keep him out of the system and deal with things privately, because she knows how dangerous it is within the system. She knows the child and suspects time "inside" would damage him terribly. Strangely, there is an innocence about him, and a real naivety. This is what is sad to me.
Thank you for your input!

 

[Otto von Bismark]

Without knowing what is driving the behavior... it's a tough call. But... if he's Autism Spectrum Disorders (ASD) or Aspie... could this just be a "topic" that he got into and now it's "the" interest? i.e. can you use his Autism Spectrum Disorders (ASD)/Aspie traits to move to a different - and safer - key interest?

This is my husband's idea. He thinks something like this will work, but I am just too overwhelmed to make sense right now. This is why I don't want to turn him in...there is that consideration.

 

[Otto von Bismark]

If he has autism a traditional mental health program may not even work. Q has some serious behaviors but he is serviced under brain injury and autism and even sexual issues would be worked on through the company we use that works with autism. Maybe ask for case management through whatever they call their department that works with autism. Even if he has a dual diagnosis the autism piece can't be ignored in my humble opinion. Just shouldn't be so hard to get services ....so sorry for you.

Buddy, when you say "Serviced under brain and autism" what exactly do you mean. How does your difficult child get services?
What company do you work with -- insurance company?
What case management and what department? Inquiring minds want to know.


This is exactly the kind of stuff I am looking for. Our insurance just slammed the door in my face yesterday, and it is a major HMO with a big name.

 

[InsaneCdn]

ovb... what buddy is saying, I think, is to switch your focus from getting help for the current hot-button issue, and get AUTISM/Aspie resources involved. You need people who understand HOW he thinks and WHY he thinks that way... General programs for specific issues probably don't understand.

 

[InsaneCdn]

Neuro - in other words, there may be some prior brain damage, or current developments there. And yes, anything related to brain injury would play into his current state as well. Good call to go looking for medical causes in addition to the other stuff, because it really helps to round out the picture either way.

 

[TerryJ2]

Arrgh! I want to strangle that insurance company nurse!!!

Has your difficult child actually acted on anything yet, or are you assuming that he will, and that's why you are monitoring him so closely? I am thinking that if this is, indeed, Autism Spectrum Disorders (ASD), that he will get over this obsession, but you need to get through the impulsivity and action part.

I agree, he sounds too fragile for a total commitment, plus, you don't want him learning anything new. This is quite a dilemma.
I am so glad you are going to the gym 5 days a wk. I bet that's a lifesaver!

 

[tiredmommy]

Call your local CPS agency. Additionally, you may need to seek out your state senator to exert influence over your son being baker acted prior to causing harm. I admire your strength.

 

[buddy]

I must have mistyped...I meant brain injury and autism. He has county case management for disabled children. They have different departments around here. Anyone can request it, it's not cps or even his M.A. worker ...its separate. They help secure funding, coordinate programs, etc. Before q got a waiver he had a "family grant " that gave me funds to do things insurance wouldn't ever pay for. He then got a wsiver and they help plan with me how to use the funds. This year when I moved they obtained funds to pay my deposit and first month's rent. I do not get any regular govt assistance, just got that because of Q's situation and her connections. She comes to meetings etc if I ask. Through the waiver they helped us get I hire a behavior management company. They come to our house and take q out too. It is like a PCA but they have behavior goals to teach and document.
Is that clearer? Here they divide the kids up by Disability somewhat so he used to be served by the dev.disability workers but now is served by the traumatic brain injury workers. Who you get to actually work with your child is not tied to that diagnosis.though. they have a separate mental health group that we dont use.

 

[Otto von Bismark]

This is quite a dilemma.
I am so glad you are going to the gym 5 days a wk. I bet that's a lifesaver!

This is my six month-a-versary of the day I started my free weight program. I invited people to feel my muscles today! The next time will be at my one- year anniversary.

by the way I have made some good strides in the past day or two. I pulled a near-allnighter last night, so I am whipped. I will write and update tomorrow. I think we are getting connected with good people. I called my insurance co. yesterday, after deciding that the day before's conversation just didn't happen. Got a totally different story. We DO have mental health coverage -- $300/day co-pay, up to a MAXIMUM of $1500 no matter how long he stays. I also got the ins. co. ABA/autism manager to see if we can stretch their ABA to find a provider who will take on behav. mod. therapy for my difficult child. She is looking and is prepared to go out of network if she can't find anything.

Also, CARD center called and the caseworker who called me back is a vast nutcracker. She is opening up cans of whoopass one people left and right already. She is calling the autism -specialist psychiatrist's (at huge university medication center -- we have been waiting for six months to get in with them) direct line tomorrow, while I will be in the room with her. Things could be turning around.

 

[InsaneCdn]

ovb... that's kind of how it was for us, too... things had to hit a crisis point, and then finally one or two key people came on board, and THEY knocked down doors and made holes through mountains...

 

[tiredmommy]

Way To Go!!!

 

[TerryJ2]

I called my insurance co. yesterday, after deciding that the day before's conversation just didn't happen. Got a totally different story. We DO have mental health coverage -



Yaaaaayyy! Yes, I should have suggested that. Just getting a different employee, and using different words makes a world of difference. BRAVO, Warrior Mom!

 

[susiestar]

Wonderful!!! I sometimes wonder what is wrong with about 1/2 of the people at every ins co we have ever dealt with. They seem to be more interested in NOT providing services of any kind than in helping anyone for any reason at any time. Thankfully if you keep pestering the ins co or agency, eventually you get to someone who isn't such a complete jerk/idiot and they give you the actual info that you need and help you.

I hope you are proud of yourself for the exercise program and for persisting until you found people who are going to help your family! Both are HUGE!