I can't sleep...

[klmno]

I'm stressed over difficult child and this sw shooting everything down today- she was negative about everything I said I'd heard. She said she used to work at processing those waivers for medicaid and that difficult child would not qualify for one. She said one reason was that he didn't already have a case manager. Well, if you aren't on medicaid I don't think it's possible to get a case manager. I don't know if there's a way to get any help. She said "I can see you're frustrated- I'll leave message for regular case manager to call you- maybe she'll have some ideas". So, I guess I'm supposed to look forward to going over all of this again - never mind that I've been going over it for 2 mos with half the people in the state.

Then, what's she going to say? At this point, I'm convinced that no matter what any of them say, the next person I talk to will tell me why that idea won't work. Then we'll spend 15 mins discussing how this state svcks when it comes to helping families and those with mental health issues. But nothing will get resolved.

One thing she did say that I found interesting- she said the school could recommend a Residential Treatment Center (RTC), day treatment, etc for difficult child through the iep team meeting. I knew that- what I found interesting is that she said the iep team recommends it, then it goes to the county team to get funding approved. Well, this appears to be what the principal was trying to say- that she couldn't just recommend something when difficult child hasn't had issues warranting it at school but we needed to have an iep meeting. Now, I'm thinking maybe the principal was not seeing that this is NOT what I was asking for. I was trying to hurry and get someone on board - the team- to have an informal brainstorming session about what supports could be provided to PREVENT Residential Treatment Center (RTC), out of home placement, etc. (This is what that coordinator told me to do) It is appearing now that this option never even occurred to the principal. Or she doesn't realize that she has that option- I don't know.

This is reminding me more and more of last year when I was trying to deal with PO, GAL, and MST guy about difficult child's mental health treatment. They were so busy trying to tell me what they knew and what they would and wouldn't do and what they expected of me, that they wouldn't listen to a da** thing I was trying to tell them. Furthermore, they didn't know all they professed to either. But, I don't have the resources (time, money or emotionally) to go thru any more fights like that. I feel completely expended all the way around.

I cringe at another person from this county acting like they are going to help, only to have them put more demands on me and threaten me legally if I don't comply. I'm tired of people pressuring me about what they think I should be doing regarding difficult child. I realized today that the regular sw called Friday and brought up the new medication again. When I said I wasn't sure and was waiting for psychiatrist to call me back. She sighed and said "well you do have him up here because you want him treated don't you". Of course, that was insinuating that I would be refusing treatment if I didn't consent to this medication. Then today, I remembered that is exactly how I ended up consenting to the prozac. It was this same sw who said the same thing to me almost 3 years ago when that psychiatrist suggested prozac. Maybe all these medications are the right answer, but I'm tired of feeling pressured into things.

I think I have just reached a breaking point- between difficult child's legal issues, the custody fight last year, all the effort (3 years) to find a good therapist, dealing with the ignorance and dictatorship of the PO, dealing with this sd and their stalling when it comes to helping difficult child but over-reacting when it comes to disciplining him, the financial situation, and difficult child's instability. I think I have no more that I can give.

If I tell the psychiatric hospital to just call social services and I'll work with someone if they can find someone who does have THE answers of what I should do instead of bouncing me from one person to another and from one theory to another on how to get help, and if they can get someone involved who actually helps instead of making more demands on me, that's fine. But, if they can't do that, then they just need to place difficult child in foster care. Will they charge me with abandonment when I've been visiting him and am the one who called cops and got him in there? I already told her today that if I bring him home and don't get help within a few weeks, we could be living out of the car. Then what?

So, am I supposed to move in the car with him or just not go pick him up? And what fool came up with the concept that you solve the problem of a single mom needing help with an unstable difficult child by placing more demands on her? And if that cm from school emails me one more time about whether or not difficult child has completed his makeup work from all these days he's missed, I'm going to scream. I have emailed her several times and said he's going to need some one on one at school to learn this material and get some work done. I can't teach it to him and sending him home with a handful of worksheets isn't going to cut it. She responded once to those emails- it said one of his teachers could stay for about an hour one day after school, but that's all she could do.

It's all whacked. It isn't all difficult child's fault. But I don't see the point of me fighting anymore- actually- I have nothing left to fight with. All I've done is fight one entity after another for almost 2 years now. Yes, I've won those fights, but then another battle pops up as soon as one is over. It has been this way continuously for 2 years. I don't think I can continue to live this way. Even if I could- I have nothing left to fight with.

I told sw today, I exhausted all resources to keep difficult child home and to find and be allowed to use private mental health care. Now, I finally have that in place but can only take advantage of it if I can keep the private health insurance. I can't keep the insurance if I can't work and I can't work full time if I'm taking difficult child to therapist, psychiatrist, PO, iep mtgs, taking myself to therapist, etc.

Sorry- this is just a sleepy rambling vent...If anyone made it this far- if you know what to expect if you just refuse to pick your kid up, please let me know. I don't know how else I can get them to take it seriously.

 

[flutterbee]

You need to talk to that guy you talked to the night difficult child was admitted. I think he was at county mental health? Maybe they can get you a case manager. I know you don't want to do county mental health, but that may be where you end up getting the most services and resources. I also wouldn't take what the SW said about the medicaid waiver as gospel. Unless she is a caseworker for medicaid, I would still pursue it.

The thing is, you've been trying for so long with the private system. I think it's time to try something different. I'm sorry, I don't remember the problem you had with county mental health. But, with as bad as everything has gotten and with the level of services and strings to pull they may be able to provide, I'd say it's worth another try.

You sound exhausted. I don't blame you. We have this board and it's great, but we really need to find a way to pull together as more than just support for one another and advocate on a local, state and federal level for our kids and services.

(((hugs)))

 

[klmno]

Heather, there are many problems with the county mental health. In no particular order of what's most critical- they continuously lose difficult child's file, they hire the lowest on the totem pole (interns and newly licensed) who aren't experienced, since they are the county clinic if you go in at 1:50 for a 2:00 appointment, you might be sitting there until 5:30 (I miss more time from work with them- it almost cost me my job once), they used to take private insurance (I hear now they don't- only medicaid patients) and I had difficult child and myself going to see a therapist there who badgered me for mos trying to get all kinds of details about my childhood when difficult child was erratic or manic or whatever and difficult child already had a diagnosis and the guy kept saying that he was sure he could help for 3 mos then when I took difficult child over one day the guy threw his arms up and said he didn't know what to do or how to help and he had difficult child tdo'd- but no one else- even the psychiatric hospital thought difficult child should have been tdo'd, the guy said he needed difficult child's file and I should have signed release forms- I had signed release forms 6 weeks earlier and he had never looked in HIS file to see it, difficult child had done some things 3 years ago that I wouldn't even want to post here and I went to several people over there and asked if they thought difficult child was a danger to himself or others and they continuously told me no- but kept putting the repsonsibility back on me, every person that I speak with around here (profs) tell me they don't blame me when I say I don't have any faith in them- even the judge nodded in agreement when I brought it up in court, furthermore, they want to throw away difficult child's previous diagnosis, treatment, etc, and start over with their evaluation, diagnosis, and treatment to see if it works then if it doesn't, they will refer him for more help, this isn't even to mention that there is a several month waiting list to see anyone and get started, oh- another thing- their policy is that once you've seen a therapist over there you have to go back and see the same one- you can't start seeing another one so we'd be stuck with mr. "I don't know what else to do".

Most of the patients over there are either MR with less educated parents who they can tell almost anything to or, really, the majority are court ordered so they talk to people like they are less than human and try holding the court order or whatever over their head to get you to do what they say and half the time, any decent parent who has done some homework on the issues or advocated for their kid at all knows it's BS. Their tdocs are just less than adequate. I would rather difficult child not live at home temporarily and me be able to continue taking him to private profs than to have difficult child live at home and us go on welfare and medicaid (which quite frankly, we can't live on anyway) and have his mental health care come from there. If that had to happen- I would move out of this county. There are other areas in the state where their local mental health care is MUCH better than here.

The guy we saw last Thurs was probably correct- the school could have done more. But his agency isn't worth a darn as far as helping people- except in rare cases when it is a crisis and the cops take them to the crisis area.

If this sounds angry- the anger isn't directed at you- it's directed at our local agencies.

 

[flutterbee]

Then I would contact the judge (if you're allowed - ask your attorney) and tell them that neither the PO nor the GAL has offered you all of the services under CHINS and that what they did offer was not beneficial.

Other than that, I hope the regular SW can be of more help.

Actually, at this point, I would start calling my local state rep and asking them for help and where you can find services. They may not have the answers off the top of their heads, but they should research and get back to you. I had a lot of help from mine. And if they find out that the CHINS services aren't being offered, they may make a phone call and get the ball rolling.

I wish I could wave a magic wand for you.

 

[klmno]

Thanks, Heather! Did you mean the state representative? I haven't tried that. I called the state dept of mental health- he tried to help. Unfortunately, the specific jurisdictions in our state are allowed to make their own ppolicies about how to access help that requires state funding. This is where my problem lies- if I was in the city or neighboring jurisdiction, it would be much easier. I'd sell this house tomorrow and move if I could.

Also- I agree about the waiver- it has to be applied for thru social services, even though it's a state waiver, so I'm thinking I'll make a trip down there tomorrow (actually I guess that would be later today). But see- that will be more time off work. The judge will ultimately hear about all this, but she sure won't be able to fault me for not trying to get my son care. I can't afford any more attny fees. They are $150 an hour and time on phone is charged too.

 

[flutterbee]

Yes, I mean your rep in the state legislature.

I'm fortunate that mine is the one that has really advocated and fought for years for mental health issues in our state and also sits on the education committee. When I asked them for help in specific areas, the aides researched it and got back to me. My rep actually called me himself, too.

 

[klmno]

Well- my rep isn't on my favorite list- he's rather conservative about mental health, spec education, etc. But- our current and past governor are pushing for more mental health issues- especially for kids and those in the correctional facilities (remember Cho). I wonder if it would do any good to contact him? The judge- oddly enough, I felt like she really understood where I was coming from when I testified in Jan. I did try to contact her to see if she would let difficult child and me stop by. I had to leave a message with her clerk and I never heard anything back. (Her clerk isn't so good though- she was supposed to contact the attny and me once and did neither.)

Anyway, I'm really supposed to go through the PO for any legal issues. I have started dropping a few hints to her and will need to update her at least by our next appointment mid-Jan. If she has to get involved, it's better she do it before difficult child breaks another law- which will probably be in late winter/early spring. But she will never get it- if she knew half the stuff difficult child did or that I live with, she would spend 2 hours going off about it instead of offering one shread of help.

When difficult child has an outstanding legal issue, I'm not allowed to write a letter directly to the judge- well I can write it but she won't read it, supposedly. Now, difficult child has no upcoming hearings but is still on probation and has a suspended sentence so I don't know how it's viewed. Anyway, maybe I could document some things in a letter and send it to govenor and copy judge. That could get interesting! Especially if I copy the GAL, too.

Thanks again, Heather! I'll try going to bed again now! The dogs will thank you too!

 

[Marguerite]

A thought from Down Under - while I cant help with the specifics of who to talk to, how, and what options you have, I do have some ideas for you.

1) You've already done so much, don't see your current situation as a failure. Every battle successfully navigated is a success. Even if you feel you're fighting a repeat version of that battle again later - you still got through it before, this is a new battle. Try to mentally tick off each battle as an achievement. If you get a similar battle to fight, remember that you have previous experience, and use your superior knowledge to your advantage.

2) When dealing with people who treat you like dirt, or who are slack about how they do their job, call them on it. Be polite, but firm. Point out that you ARE an expert at parenting your child and that you did not come down in the last shower. If necessary, make a list and explain to the doctor, "You're saying X about my child. You are not the first. But X has also been thoroughly discredited before, undoubtedly will be again. Will you work with me on this to save both time and effort, on both your behalf and mine? Let's cut to the chase here."
Never forget that you are entitled to be treated with respect and on an equal footing as an expert in your child's case. All you are doing when you consult doctors, is using them as a carpenter would use a saw or a plane, to do a job he can't do with his bare hands. A carpenter COULD just break a piece of timber at roughly the length he wants it, but it would be rough, it wouldn't be quite the right length and it would need a lot of tidying up before he could use that length of timber to make a bookcase. SO he uses a measure, a pencil and a saw to get the length of timber just right.
In the same way, you consult an expert to advise you, within that expert's knowledge, on things that you might have a broad idea of but need expert guidance. In that area, the expert can be relied on. But only in that area. You take the information (and any help) and add it to your mental data banks. So armed with that attitude, you should be able to get the message across that you aren't the average single parent, able to be browbeaten and bullied into not questioning too closely or insisting on appropriate treatment. Always remember - the squeaky wheel gets the oil. If you must, be a nuisance and keep asking for specific help. Make a shopping list of what you want (or ask the experts to give you a list of what is available to you) then ask them to help you get it. Ask for information on the steps you have to follow and take notes. Log your notes into the computer and keep your files up to date. If nothing else, one day you will be able to write a book (exposing the problems?)

3) Now you've doe a great deal, covered a lot of ground but still feel like you're running a Red Queen's Race, it's time to consolidate your knowledge and experience. So you sit down with a big piece of paper and go over everything that has been done. Do it as a mind map if you can, because chances are your experiences can't just be written down as a simple list.
Now do another mind map - this one is based on where you are at now, and all the options open to you. Include the ridiculous ones if you like; sometimes they're not so ridiculous, or sometimes they can lead to ones which are definitely "out there" but also likely to have an impact.
In your lists/maps, discuss the PMI of each option (PMI stands for Positive, Minus, Interesting). Also include the projected outcomes of each possible path you can take - what is likely to happen in each case?

You might think you don't need to do this, it's all safely locked in your head. But it's amazing how it can help. It's even more effective than using someone as a sounding board, it helps you have a different perspective on it all.

You deserve to be treated with respect. Living on your own with a difficult child can beat you down sometimes, which leaves you wide open to being brushed aside or dismissed by various experts you rely on for help. If you can make it clear that you are a vital part and equal member of your son's health care team and learning team, then you may find you get better treatment from them. You're allowed to not know all the answers; after all, they don't. But you are the spider in the web here, you're the one holding all the strings that lead to this expert or that expert, you're the one in contact with them all and with the most complete picture. Your responsibility in this is to inform them of the facts, in the detail they need and as effectively as possible. Maybe even keep a summary of it all, multiple copies, to hand out as needed. If they don't read it and still ask you stuff that they should already know, then tell them that they are wasting your time by not having done their homework and read the file. A doctor who keeps you waiting for hours - send them a bill for your time (don't expect payment).

We had a case like this in Australia, where an Aussie man began billing various people for wasting his time, including billing the bank for the amount of time he waited on the phone with musak playing interminably. It caused quite a furore but made the public far less tolerant in general and caused the banks and a lot of other organisations to lift their game and not treat people with such contempt.

A few things to bear in mind - you do need to be tolerant to a certain extent, especially with professionals you've not met before and who need to be brought up to speed. Also, the more specialised an expert is, the more chance there is they will be unpleasant and patronising, and because the more specialised the more scarce, the more you will have to tolerate this and be patient. However, over time as you 'cultivate' this person, you can groom them to your standards and make it clear what you want from the relationship especially as it concerns your child's care.

Good luck and I wish you some comfortable steel-capped boots for standing around waiting when you need to, and for kicking arse when you need to.

Marg

 

[TerryJ2]

Of course, that was insinuating that I would be refusing treatment if I didn't consent to this medication. Then today, I remembered that is exactly how I ended up consenting to the prozac. It was this same sw who said the same thing to me almost 3 years ago when that psychiatrist suggested prozac. Maybe all these medications are the right answer, but I'm tired of feeling pressured into things.

I think this is a microcosm of the whole thing.
They only have one song to sing and that's it. Then they repeat it. Ad nauseum.
And you feel pressured into doing it.

I would be pulling my hair out. Then I'd start on their hair!

As frustrating as it sounds, you're going to have to be Machiavellian about all this. Marg is right in saying:
the more specialised an expert is, the more chance there is they will be unpleasant and patronising, and because the more specialised the more scarce, the more you will have to tolerate this and be patient. However, over time as you 'cultivate' this person, you can groom them to your standards and make it clear what you want from the relationship especially as it concerns your child's care.

I was up at 5 a.m., and I don't have half the things on my mind that you do! It's hard not to let things get to us.
You sound like you've thought this through, but more like you've rewound the tape with-o finding the direction you want to take.
Are you still working? I would hang onto my job with-my fingernails, just to keep that ins.
Please try to get some sleep tonight. I'm sending fluffy pillows and soothing vibes.

 

[klmno]

Thanks Marg & Terry! the phone woke me up after I'd slept 4 1/2 hours so I'm still drinking coffee trying to open my eyes.

It was regular psychiatrist- he said the new medication might help but it's no big deal- he said we won't leave difficult child on it a real long time,probably and it won't interfere with any other medications he's on or that we're considering.

Then, social worker called. She said I should continue pushing the school to recommend the county team and I should apply for the medicaid waiver and disability. She said if the school won't recoomend county team after iep meeting, the get the PO involved and go that route.. (I'm trying to avoid that route because then it becomes a court order and the PO choses services, not me and if I don't accept them or don't let them all order me around, I'd be in contempt of court) As far as the waiver, she said difficult child might not get it but she thought he might and it would allow getting difficult child all the services I want without using county mental health- so there is nothing to lose by trying. Then, regarding the disability from SS, she said people usually get turned down until the third time- sometimes they make it through the second time. So, it will take a while.

She said I she would put in the discharge papers that the financial and other stressors at home are contributing to difficult child's depression,. I asked her to do this- I hope I don't end up regretting it.

 

[JLady]

KLMNO... I don't have any words of wisdom for you. I hear how exhausted and tired of fighting you are. I have said a special prayer for you that the good Lord guide you to the services that will do you the most good. Hang in there.

 

[artana]

Klmno,
I hear in you the exhaustion I feel and my situation has not even gotten to the level you are dealing with. I think that it is only human to be exhausted and have moments when you doubt if you can pull it all together again and have one more exhausting fight. I'm not sure what state you live in or I would try to do as much research for you as I could. I have been a single mother, with a difficult child, and I know that I was ready to tear my hair out. Any small thing I can do to help ease your research, I will gladly do.
Stick with it. Every battle is a small victory and you might end up winning the war. I know that I feel that way when I get two or three days where both my children come home and they did well that day. Those are the days I grab onto for dear life.

 

[KTMom91]

Why not contact the governor's office? State senators, office of education, any agency at this point might have a concrete answer or a positive direction for you. I'm so frustrated for you and difficult child...sending hugs, prayers, and more coffee to get you through today!

 

[klmno]

I can't believe this- I call social services to find out how to apply for this waiver- I know it has to be thru them but I don't know how to go about it. So I listen to 15 messages as the recordings direct me from one "press #" to another, then when it sounds like I'm finally there, the phone disconnects. This happened on Fri and it's happening today. So, I call the intake # and it says the number is disconnected- with no new number given to call. I called a different number- it's a fax beep. I called the adult protection line and it gives me a voice mail.

 

[totoro]

Is there anyone through the Federation or Nami that you can call in that area that might maybe have a connection or maybe themselves be an advocate for difficult child?
Someone that has dealt with some of this, but is not in the middle of it and would help you out but not charge you?
I had a woman from the Federation in Idaho that was going to help me with some of our stuff, she actually did help me with a lot. But then her difficult child was Hospitalized.
Maybe if there is one of the support meetings nearby someone can help you?
I don't know if you have tried this already? But you need someone to hold your hand and be a from of support to you right now. And not just take your money!
I know you already have a ton on your plate. I wish I knew your area, or I would go and fight with you if I was closer.
I know there are people out there that advocate for kids. It is just a matter of finding one who is near you and will help you guys.
You need something and fast.

What is going on with the Research Possibility for difficult child? Is it just the waiting part now?
I will look, keep looking. I look on the web everyday for anything I think will help some of us. Maybe?