Is there hope?

[hamsterwheel]

How do reach a child that is engulfed in abandonment and despair? She looks to her me, her mom for the answers, to guide her, to love her. Mother says you can reach for the stars, you can do it, only to come back with an empty hand, broken and defeated.

My daughter, the reason I breathe is struggling so desperately with her emotions she has become reckless and self destructive. Nothing matters any more, to her that is. She has nothing left to lose, except her freedom on her current path.

My difficult child is a wonderful child. On her good days, she is everything everyone else wants to be. She’s smart, funny and literally beautiful inside and out. The hard knocks of life have taken a toll on her in her tender 12 years.

She has suffered more than any adult, yet young child should have to endure.

I am her emotional support, her coach, her mentor and the only one who hasn’t given up on her. It is my honor to have such a significant role but I am running out of reasons to give her hope. I myself am running out of reasons to have hope.

I reached out to, 211, First Call for Help. I have been involved with YCM, DYFS, CMO and little guys in between. Doesn’t anyone care anymore?

Is it all about putting on a band aid until the clock strikes five then passing you off to someone else? Sorry we don’t do that, sorry that’s so n so’s responsibility, sorry, I screwed up and now you have no health insurance. Sorry, I hope you don’t see this as a reflection on our agency, but the lack of your case worker’s ability to provide your family with services that we have access to. Here’s a $50.00 gift card to take you family to the movies. BULLCRAP!

Well now, what’s left? Her life is at stake here. Her hope for a future is diminishing. My faith in the agencies here to assist us no longer exists. Will anyone remember her when she leaves their “care”, will they say, “I hope she makes it”, is she just a file number with active case or will it be (god for bid she dies) and they say, “I remember her, I should have done more?” Or will they even care?

The “agencies” have failed to help my family and in many instances made it worse. My little girl is in the hospital for the 3rd time in 3 months. Would it have happened anyway if the “agencies” did what they should have, what they’re supposed to do?” There’s no guaranteed way to tell, however, my star, through it all has never given up, until now, which leads me to believe, it could have been prevented.

I am victim of a failing system, a victim of my income, to much to qualify for anything not enough to pay for what she needs.

Where do you go from here? When with things change? Who do you contact to make the change? Is there even hope?

 

[smallworld]

Hi Laura, I'm sorry things are so rough for your daughter, and consequently, for you.

What led up to this recent hospitalization? Are the doctors administering any psychological testing? Are they coming up with a more definitive diagnosis? As you may know, "explosive/impulsive" is not a diagnosis and cannot guide the treatment.

Until you can get some firm answers on what is going on with your daughter, which will then lead to appropriate therapeutic interventions, I'm afraid it will feel as if you're treading water. And I'm sure you don't want that and your daughter doesn't want that either.

Hugs.

 

[hamsterwheel]

My difficult child's diagnosis is Bipolar, but many therapists do not feel this is accurate as she is able to control herself when she chooses to. Some have suggested borderline personality but again nothing can be confirmed.

Most often, she escalates because she is told no or is asked to do something and just doesn’t want to do it. Hospital reports always say sense of entitlement. It is mostly suggested that she is just stubborn.

The recent hospitalization came from the school where she refused to co operate, walked out of the classroom and started walking around the school. When they locked the school down and she couldn’t get out, she became aggressive. Which is extremely unusual. She loves going to school. Consequently she was removed in handcuffs to an ambulance.

This is very sad to say, but she needs to be in the hospital for several reasons. Foremost her safety, secondly, I needed to be able to go to sleep in peace. Not sitting on the couch fully dressed in case she runs off again or if she doesn’t like what I say wondering if she will come after me again.

At this point we are waiting for residential, but in the interim, she will have to come home, again. This is a huge problem. Although I want her home with all my heart, I can not keep her safe from herself and what happens if she hurts someone else?

All the agencies are aware of this, but there is nothing they can do, so they say. She is too young to go to a shelter and there are no other facilities to accommodate her.

I am really stuck, scared she may do something to endanger herself and others.

 

[smallworld]

Laura, if she is so aggressive, why is she only on Abilify? What other medications have been trialed?

 

[hamsterwheel]

She was on lithium and depakote, but taken off for extreme weight gain almost 150lbs and other side effects.

I might add, she doesn't become physically aggressive unless you touch her. She will storm around like a Sherman tank as the principal put it, until she is touched, then she will kick, bite, pinch, punch & spit.

 

[BusynMember]

Hi. Can you take her to your local county mental healthcare facility? Do you have Medicaid? If not, I strongly suggest applying for that plus social security. It will give you access to medical care.

I have borderline and bipolar together (they often co-exist). I am learning that borderline tendencies in kids to exist, but you may have trouble finding somebody who knows how to treat her. medications aren't that successful for borderline...but they do help the bipolar. A paritulcar type of therapy is excellent for borderline and early help can improve her ability to cope. It's a difficult disorder in which your emotions are all over the place, minute to minute, and rages are common due to emotional dysregulation, which needs therapy to be taught. You really need to find a way to get her treatment. We are also low income, but we have Medicaid and are finding that, at least here, the university hospitals, which are awesome, take it.

 

[smallworld]

Has she ever had a neuropsychological evaluation to confirm the diagnosis?

If she truly has bipolar disorder, there are mood stabilizers that are weight-neutral. Lamictal and Trileptal come to mind. But she needs a psychiatrist who will work dilegently with you and your daughter to find the right medication combo for her.

 

[timer lady]

Laura - you've been given good advice. As a mom of a runner, with bipolar plus a bit of this & that mixed I want you to know I understand.

I know your exhaustion. I'd like to offer you some very basic ideas:

1. Any physical aggression, threats against herself, or others contact 911 & ask for transport of a mentally ill child to the nearest ER. The important words are "mentally ill child".

2. Stop staying up all night to protect her from herself. If she runs, you'll know. She'll make sure that you know. At that point you can take action - don't lose sleep over it. You'll not be functioning at optimum levels if you continue to do this.

3. The agencies may not have failed you; unless/until you trust you mom's gut instinct & work with them to form an effective intervention plan (Integrated Listening Systems (ILS) skills, therapy) plus a crisis plan. You & you alone will have to work to form a team that will not quit. Trust me I know & have a team of 13 for wm & 8 for kt. It took me years to put together a cohesive team.

4. Take the time while your difficult child is in the hospital (or Residential Treatment Center (RTC)) to rest. This is the time to reconnect with husband & your easy child. You cannot miss out on the rest of your family while difficult child drains the life's blood out of you.

Please don't take this as a criticism - I've lived this with my tweedles. My difficult children, bless their li'l pea picking hearts, will do their best to guilt me, manipulate, act the poor orphan plus all their "antics" til the cows come home.

 

[hamsterwheel]

I am answering all responses in this one lengthy post. Sorry

She sees a psychiatrist every month & we have a family therapist that comes to the home weekly and her therapist is out on maternity leave until March.

She did have Medicaid until end of November, but no longer is covered, because one of the agencies involved to assist us was going to pay the health insurance premium and didn’t so now she’s in the hospital & not covered. I tried for social security and was denied because I am over their income guidelines. Since when is having a disability have anything to do with income?

There is a crisis plan in place, an intervention plan, and the entire police department knows who we are. I have no problems calling them each time resulting in a hospitalization.

The team is what I am looking for. So far I have two members, our family therapist who has been doing her all to advocate for us going above and beyond the call of duty and my personal therapist. Now if I can find the people who have the authority to make a difference for difficult child well have something. Even the psychiatrist is relatively dismissive. Yes, tried to find another & tried all the providers listed with the ins., but now no longer have insurance.

I continue to run into situations of, well try this agency and passing us along. If I could find someone to truly take an interest and examine the whole situation instead of following protocol & procedures and passing the buck, we may stand a chance.

She did go for the neuropsychological evaluation several years ago and I was told she falls under the umbrella of emotionally disturbed and was classified as Bipolar for insurance/medication purposes. I am going to ask to have the neuropsychological evaluation done again, so thank you for bringing that up.

We ran into a medication problem last time she was in the hospital 2 weeks ago because, according to state law, they have to inform patients they can refuse their medication, so she did.

I can not figure out for the life of me how a child is given the authority to make that kind of decision. This time, THANK GOD, she recognizes that she is off the wall and has agreed to go back on it and take the higher dose.

Since I’ve been up this morning, I have emailed, the state, my congressman, the hospital and the local news. I am truly tired of being passed along, watching my child suffer in the interim.

I would like to learn more about the borderline personality so I am about to go Google it. I am not sure how I feel about this, but I am willing to explore it. My difficult child, suffers from feelings of abandonment. She does not feel loved or wanted. There are many circumstances and life tragedies that have led up to this. I’m tired of hearing that kid just need a good wack on her tailend. I would love to see someone try to do that, cause I did several years ago and then had the child protection agency breathing down my neck. Not a mark on her just a spank on the bottom when she was about 8.

By law if an authority figure becomes aware of it, (the school), they have to report it.

She didn’t like being disciplined. It was a whole other story when she kicked the principal for being disciplined though.

If anyone thinks of anything else, I could or should be doing please let me know.

I am so glad you are all here.

PS: I did take some time with husband last night, easy child was with-gma. It was nice, no fires, no drama just us. Forgot what it was like was so nice to remember why I married him

 

[TerryJ2]

Just sending support. {{hugs}}

 

[Marguerite]

Laura, I'm sorry this is such a difficult time for you and for her.

Being form overseas, I have often a different take on things. If this is too alien then just ignore me, I can often have a wrong view simply because things are done differently here.

What has me concerned here and makes me think of a possible different direction for you to at least consider - you are concerned about a possible misdx. Bipolar hasn't really been nailed down, has it?

Which brings me to a concern - has she been thoroughly evaluated for the possibility of Asperger's? It would need a neuropsychologist evaluation, and a darn good one. The problems here -

1) she is very bright. The brighter the person, the more they adapt to 'mask' whatever the disability. It's not deliberate subterfuge, it's simply the natural way we all try to cope, to adapt to seem as normal as we possibly can. The brighter the person, the more they are capable of adapting. But this adaptation is still a pretense of sorts, underneath is still often a very unhappy and upset person.

2) She is female. Asperger's is tricky to diagnose especially in girls. Research is showing that girls are often very different to boys, they can more often be missed with diagnosis. Again, especially the bright ones.

3) There could be other problems at the same time.

The thing is - kids with Asperger's also can get VERY depressed, especially in their teens. difficult child 1 was at times suicidal. We see what we look at, quite often, and teens in general are liable to mood swings. A difficult child teen is likely to be even more moody, they don't need to be BiPolar (BP) to be particularly difficult or extreme in moods. They will have their reasons, if you did, in most cases. Often they can't identify the reasons for themselves, but the reasons are there. BiPolar (BP) has mood swings which don't have reasons, as a rule.

I find it has helped, to remember my own strong emotional swings from when I was a teenager. At the time there was always a reason even if the adults in my life would not have recognised the validity of my emotional state. I remember often being told, "Stop complaining! You've got nothing to worry about!" but that never made things feel better, not one scrap. And with hindsight - it was not helpful to say that to me. Yes, I can look back and see that to have a boy I liked not only totally ignore me but start paying attention to a girl who had been really mean to me, did seem devastating and I didn't know how I could stand it, and when you compare that to how you would feel if the bank were about to foreclose on a mortgage just doesn't seem to compare - back then it was the first time anything like this had happened, I had no way of knowing how to handle it, I felt publicly humiliated and exposed and was so inexperienced that of course it was raw and painful in the extreme. I look back and still say - given all that, my extreme feelings were not out of proportion, they had a reason.

Too often we try to medicate away the deep pain in our kids. We want an easy fix and often there isn't one. But tere are other options, other things that can help. I say this who did find that medication helped our kids, but we had to use other things too.

What helped difficult child 1 the most, was acknowledgement that yes, his pain DID have good cause, it was OK to feel that bad, there were valid reasons. Also that it wasn't his fault, and that it would pass. We used antidepressants for a while at high dose to help him begin to cope, to get the extremes of the depression managed so he could learn to control what was left.

difficult child 1 was 6 years old and feeling very bad about himself, when he was diagnosed with ADHD. At first I tried to shiled him from the diagnosis, because I worried how he would feel about himself, being told he had a condition like that. His doctor, however, made it clear - if anyone knew there was a problem, it was difficult child 1. He of all people was the first to know that something was wrong. But he was interpreting it as "I am bad because I am made that way; I have to accept to always be the naughty kid even if I don't want to be."
Once he realised that there was a reason, he actually was happy to be diagnosed. It wasn't his fault after all!

You sound desperate to help your girl. I don't blame you. It does sound like there's been a lot of mucking around, a lot of "We aren't sure but let's go with this," and shoving pills etc at you which are not reaching the problem, or are only a patch. Nothing really serious in terms of REAL help.

The trouble is - you know her better than anyone else. She knows herself. So now this knowledge has to come in to the equation. You both need to push to get the label that feels the best fit. It may be Asperger's, it may be BiPolar (BP). But whatever label, it does need to be thought through properly and you have to feel confident with it. But it can no longer be some expert telling you what it is, YOU now have to be seen (by yourself too) as part of her diagnostic/management team. As she does. It's your right, it's her right. And responsibility. And frankly, it gives you a better chance of getting it right...

So some suggestions -

1) Aim for a neuropsychologist update and ask them specifically to consider Asperger's, bearing in mind her high intelligence and the fact she's female (and girls tend to be atypical with Asperger's).

2) To help this, go to www.childbrain.com and do the online Pervasive Developmental Disorder (PDD) questionnaire. It may score her as normal - that's OK. Print it out anyway and give a copy to the neuropsychologist or other doctor. You can't use this Pervasive Developmental Disorder (PDD) questionnaire to diagnose this yourself, an expert has to do it. But it does signpost the areas of concern, areas you may not have thought of because you live with this and accept stuff as normal that may not be.

And as for everyone/everything else - it is extremely frustrating when you feel like they're fiddling while Rome burns. I remember feelnig frustrated when difficult child 3 was still not talking, and before I could access some urgent speech therapy, we had to undergo a course teaching us how to talk to our child (ie it's your fault for neglecting this child emotionally). It wasted another six months, at that time a significant percentage of his life. But if we refused to do it, then they took us off the therapy waiting list. very unfair.

But in this case - take a multi-pronged approach. Use whatever you can. Make multiple appointments and then grab the ones you want, cancel the others. If you instead make first this appointment (then wait) then make the next, it takes a lot longer and sometimes you go through a long wait all over again, because what you hoped to be ac hieved in a particular session turns out to be a dud. If you instead have multiple appointments made, and appointment A turns out to fix things after all, you can cancel appointment B. But if appointment A is a dud, then appointment B next in the diary is already in place.

Meanwhile if someone hands you free movie tickets - they're doing it to make themselves feel better. It's not a cure, it's a band-aid attempt. But hey, it's a free movie ticket. As long as it doesn't get in the way of more valuable help, grab what you can. Often the free tickets etc are a totally left-field kind of thing, some movie theatre is making a donation in order to make themselves look better, it's not simply someone saying, "Let's go out and buy some movie tickets, they're gonig to be a lot healthier than doling out antidepressants."
Instead, it's a way of saying, "You are stressed, with good reason. I can't fix your stress any more than I'm already trying, but maybe this is something you can do for yourself while you're trying to cope with all the rest of this crud."

Over the years we've been given free movie tickets; the kids have been sent to camp (for kids who help care for a disabled family member) where two of our kids met their spouses(!); we've had free tickets to theme parks when they have a special day for families living with disability; we've been to barbecues, to parties, to government receptions. I've been interviewed by the media on various topics.
None of this was in any way meant to be "buying me off" from trying to get help. It was a fringe benefit, something we were able to do AS WELL to help our family feel a little more normal sometimes. We still went back home to deal with the same problems we have been living with, but hey, thanks for the handout.

Along the way some of the fringe benefits have been good - the Young Carers camps came with therapy, the kids would talk to one another in a large group therapy session and that was gold. A lot of these kids had problems themselves, at least half were also difficult child.

All help, all handouts, can help. But I agree - they are not a substitute for REAL help. It is natural to feel that having a movie ticket shoved at you indicates they really don't understand how desperate you are feeling or how urgent are your needs. As long as you can make that clear - grab what they offer.

After all the enquiries and reassessment, they may well conclude that she is, after all, BiPolar (BP). Or CD. But as long as it has been properly considered, and you both feel you understand why and it feels right - then that is what matters. There shouldn't be doubt, but misdx is unfortuntely all too common.

Marg