Can I just say...

[slsh]

I hate mental illness. I really *really* do. It's like chasing your shadow. We advocate, we educate ourselves, we do our darndest, but it's not necessarily something we can ever "fix".

I lost my perspective. I want thank you safe and I want the TLP to prepare him for life. What I forgot is that you can't make mules drink, even when they're dying of dehydration. And it's not the mules' fault, nor the TLP's - it is what it is.

This is not a pity party. I'm really just very angry at myself for having so completely lost sight of what is in thank you's best interest, as opposed to what's easiest for my peace of mind. And I don't understand why I accept Boo's disability and *never* rale against it but I have such a hard time accepting thank you's. Maybe it's because thank you can be so "normal" at times and I just want to reach in and grab that part of him and staple it in place. Maybe if Boo could walk and talk some days but not others, I'd have the same hard time with his disability. I don't know...

I really truly and totally hate mental illness.

 

[klmno]

That's very well said- especially the part about seeing a difficult child seem so "normal" at times that it misleads us parents into forgetting what we (and they) are dealing with. I think it is pretty easy for us to accept a denial form of survival when that happens. And, it doesn't help when so many people in society's safety net or support system are really encouraging the parents to ride it out instead of fighting for what is in the difficult child's best interest.

 

[Hound dog]

Mental illness is slippery as oil. Period.

And Lord knows even in this day in age, while much more is known than before, we still don't know much about it. Which in my opinion makes it worse. We're getting better at pinpointing symptoms/behaviors but we're still in the infancy stage of figuring out how they really tick and sure fire ways to treat them.

I hate mental illness too. With Travis I can pinpoint what is wrong and the why of it. I can't change it. There is no treatment. But the why of it and how it works is enough to enable me to accept it, I think. If that makes sense. Is what happened with Nichole true mental illness? Or just something that happened? I'm afraid to place her into easy child statis because the truth is at this point we don't know. She's been stable for about a year now without medications or treatment. But I'm still not ready to totally accept that she has made it to easy child. I find myself worrying that it could happen again in the future. (great huh?)

My Mom is seriously mentally ill. Yet she can pass as "normal" on the surface. I've dealt with her for a lifetime and still it causes me to just shake my head at times.

Have I mentioned that I hate mental illness, too??

(((hugs)))

 

[everywoman]

Me too! It's hard. It seems like sometimes my difficult child is as rational and normal as any 20 year old. Then that person's gone and the one that takes his place is so darn hard to even hold a conversation with. He recognizes the difference. But years of medications and doctors. have jaded him to the point that he would rather just smoke pot to quiet his demons. And even though I am totally against his choice, I can understand it! And I hate to admit that. And sometimes I just look at him and his life and where he is compared to where he should be, and I want to cry. But, the moment I do, I'm afraid I will have to admit to myself that maybe this will be as good as it will ever get. I'm not ready to go there yet.

 

[susiestar]

Me three. It is so hard to watch your child struggle with an invisible illness, esp when it causes them to be so ostracized by "normal" society.

 

[totoro]

Me as well.
I sat crying last night as I tried to video K for her therapist to show how she is slipping.
K was just screaming and hitting herself, screaming make it stop, make this stuff in my head just stop. Please make the bad JUJU go away. She was doing the scream that only a parent of child with Mental Illness has ever heard. I just cried... She just kept screaming and screaming, " I am just so angry, make it go away"

But then she can go and play piano today, sure she is hyper. But the teacher just thinks she is *ADHD*...
I hate it, I hate it when N is crying and shaking and asking me what is wrong with her sister. I hate it because it hits me so hard at times.
I hate it because my husband handles this all so well.
But I mostly hate it because my poor K is so young and so lost.
(But she appears so normal to an outsider)

 

[totoro]

Just reading this makes me cry... for all of those with mental illness.

 

[Fran]

I hate it too. I hate that with everything we know and try and all the work everyone has tried this may be the best it will be.
There is no cure. Only modification of behavior and developmental leaps.
It's no one's fault but it's a thief and steals our kids future and potential.

It's still an invisible disability. Sue you can see Boo's challenges. difficult child's are not obvious and their behavior is so darn dislikeable. They ruin family gathering, terrorize or embarrass their sibs and threaten to unravel the family unit by all the upheaval, tension and financial pressure.

Yet, as parents we have to see beyond the obvious oppositional difficult behavior to see a child who needs us to see them more than ever as they age. Before graduation there are supports,with IEP's, teams,lots of people who want to help children. Unfortunately as adults they lose a lot of that and the real world doesn't give them an IEP. They can become invisible. It's up to us to see them. It's the best we can do when it comes into adulthood.

 

[KTMom91]

Me too. I have often thought that a visible disability is easier for others to understand and deal with, but when your child LOOKS normal, the world expects that child to act normally. I feel like I'm running out of time...Miss KT will be 18 in August.

 

[mrscatinthehat]

Add me to the list of haters. It just hurts so much to know that there is only so much you can do sometimes. No matter how hard you try it isn't going to get any different. Banging my head against the wall is better because at least when I stop that it stops hurting. What a horrid thing for us not to be alone in. Of course truthfully I wish no one else had to deal with these things. But wishing doesn't change a darn thing. Sigh, sigh, sigh.

beth

 

[flutterbee]

Sue, what appropriate timing of this thread.

I've been so busy focusing on other things and trying to shove - not push - Wynter towards some independence that I lost sight. When you're in the midst of it, it's so hard to see it as anything as behavior that just makes you want to pull your hair out in frustration. When we try and try and try to pull something out of thin air that will get through to your child and time and time again it fails, it just leaves you spent and weary. And you just want it to stop.

And then there's something that comes along and you sit back and you realize, for the umpteenth time, that my child is ill - mental illness, developmental, whatever. Our children compensate so well that it's easy to forget. It's not visible. It's not in your face every second.

I'm pretty angry with myself right now, too, for the same reasons. I lost sight. I understand.

 

[susiestar]

I think what I hate as much as the disease that robs us of our loved ones, or at least the best of times with them, is the way society treats them.

As children they do have supports IF they have a parent smart enough to push for them. They are still outsiders to their peers, and life is so very hard for them.

As adults it is even worse. The resources are few and far between. Often the disease robs them of relationships with the people who arranged supports for them when they were children. The law gives them the right to make treatment decisions, even when they simply are not capable of making reasonable, rational decisions.

And the real dang shame is:

For treatment and support many of them must commit crimes and go to jail. They simply cannot cope in society, those who CAN help them (relatives and friends) are powerless in the face of the disease, and the mentally ill often have few other ways to get regular meals and shelter, much less what pitifully little treatment jail or prison offers.

It hurts my heart to know so many mentally ill adults are homeless tonight, hungry, afraid, and ill. Or they are imprisoned, hungry, afraid, and ill.

I HATE mental illness.

 

[Hound dog]

Susie I couldn't have said it better.

 

[timer lady]

I'll have to agree with all of you. It breaks my heart to see my tweedles struggle on a day to day basis.

It breaks my heart seeing those "good" days when everything is seemingly normal, while those bad days take me to my knees.

Sue, I fast behind you with the tweedles & am at a loss which way to turn for them. What is the best route for them as they reach adulthood? Will kt & wm even be aware of that route & take it?

It's a heartbreaking, devastating disease ~ it tears apart families & the ill are seldom aware of the effect they have on their families.

 

[Lothlorien]

It's not fair. I hate it too.

 

[trinityroyal]

It's not fair, and I hate it as well.
It affects their behaviour and demeanour. People feel free to make moral judgements about our kids because of how they behave. And when their behaviour makes them so very hard to be around, even for us...it's hard to see the world out there, that doesn't have such fierce love for these children, reacting to them.

I've watched difficult child try to handle himself in simple, normal situations. Even a few years ago, when he was still very small for his age and looked like a cherubic little boy, society would forgive him nearly anything. Now that he's this great hulking MAN with a deep gruff voice, slouching along, people no longer forgive him the confusion, the social faux pas, the instability or the strange behaviour.

It really stinks.

 

[Steely]

I HATE IT TOO!!!!

After being in Idaho and seeing how mentally ill difficult child truly was there in phoshp - and then literally having to leave him there, crying, and fly 2000 miles home - my entire world changed.

I suddenly got it. And it was like a ten thousand brick falling on my head. Matthew is sick, and off and on, his whole life he will display symptoms of this sickness.

I walked away from that phosph in Idaho feeling like I had just sent my child to war. Of course not the war in Iraq, but rather the war he will face every day with his mental illness for the rest of real life.

I may never hear from him again, he may become even more damaged, he might transform into the soldier and man I know he can be.
Regardless he is not mine to hold onto anymore and protect - he now has to be the one who learns how to manage his illness, medication, and life on his own.

It is so breathtakingly scary and sad that I still have yet to really post about any of it (until now).
I never ever wanted this for my son! I never wanted to see my 18 yo on his knees in mental agony.

I gotta do now, cuz this is not a good thing to think about before work.

 

[lovemysons]

Sue, I'm so sorry...and Yes, I hate it too.

I'm gonna try and be honest about myself to share how I feel about mental illness.
As a child, I threw horrible tantrums. I bit others, I hit my head against walls...the "rages" were seen by my mother as early as 2 years old. This in a child who my mother also said could be the sweetest little girl on earth.
By the time I was 9 I had killed my own hamster. Why? Because alone I had gotten enraged by the fact that I didn't have a dad...kid's at school turned and looked at me and said "You don't have a dad"? when the class was talking about what their dad's did etc. It was all emotionally based. I never told my mom that I killed my own pet...it was hard for me to live with but I had thrown that lil guy when "angry".
And yet...I was also the little girl who felt compassion for others pain. How could I be this Jekyl and Hyde?
I was often the little girl who's teachers said, "She has such GREAT potential if only she would use it". I was artistic, both in drawing and writing. I could dive into a subject matter and not let it go until the answers were clear and resolved in my own mind. I asked BIG questions and wanted to know the "why" of things that others my age didn't seem to concern themselves with.
I would be the one to stop on the highway at 16 and rescue a pregnant dog injured by a car. I would be the one who would give food and speak kindly to a homeless person. I would be the one you could talk to if you felt like the world was against you...and yet, I was also the one who could get enraged if emotionally "slighted" or if I felt wronged and I would have the sharpest edged tongue around. And people would back away from me.
How could this loving, kind-hearted young lady have such a cruel edged sharp tongue.
Eventually, I learned to back away from people BEFORE I said something hurtful...I would just go off alone and feel the world was against me. Sad, rejected and lonely...that was much of my young life. And always always feeling like I let everyone down...especially because of the "she's got so much potential" comments. I just didn't fullfill it.

My mother became emotinally distant from me...I don't think she knew what to do with me. I dropped out of school in my senior year because I had said something to a guest speaker in one of my classes that caused all the other students to turn and look at me in horror. My teacher was very upset with me...I had judged a young lady who had given her child up for adoption. I had spoke in such a way that caused others to strongly dislike me, etc. Again, emotionally charged situation...but I became ashamed of myself and did not want to stay in school because of my shame.
That same year, I tried to kill myself...I had met my "dad" and he was a letdown. And my mother had said once when I was angry as a child..."you are acting just like your dad did"...something to that effect. I felt like my worst attributes were his fault.
There was always this conflict and loss of self esteem. It was easy for me to hate myself...and to hate the world around me and yet, I so desperately wanted to love and be loved.
Having a mood disorder like Bipolar 2 means for me, having a gun pointed at my head...telling me I am in a race for my life everyday. Telling me to go go go as fast as you can, get as many things done as you can, don't stop til you drop and try and be perfect. It also means unreasonable emotional outbursts...I call it the addrenaline bomb, now. It is that rage that sense of what I can't control, an injustice, that emotionally triggers a powerful internal explosion.
In some ways, I'm grateful for finally going into the psychosis feb 7, 2007. It hospitalized me and caused me to get on Bipolar medications for the first time.
No more isolating in my bedroom from the family battles, no more deep powerful anger at things I can't control, no more "running away"...from myself, no more manic race.

Now...especially after considering this post, Sue...I am seeing my young difficult child once again in myself. And, I wonder how much of his Bipolar Issues are to blame for the young adult he is today. Kicked out of the army for sub abuse, drinks all the time, doesn't seem to want a relationship with the son, my grandbaby that he just met a month or so ago.
How much of his life will he feel defeated at every turn, misunderstood, like a failure and a letdown, isolated and lonely because of all the people his sharp tongue and unreasonable reactions, frighten away.

What else has mental illness cost me? A relationship with G-d. It used to be strong but after the psychotic episode...I question G-d. How could he give me this cruel mental state? At one point in history I would have been stoned to death or burned at the stake for being thought of as "demon possessed". And, before modern medicine, they would have just locked me up alone in a room for life.

Thank you for this post...I may have to make more of a point to somehow someway try and encourage young difficult child to get help for Bipolar in himself. I am reminded that the cost is so very very high...sadly, I would not do it for me until I was forced to because of the psychosis.

It is a horrible disease of the mind. So much self forgiveness and healing must be done in addition to the medications. And, no...the world does not have to understand. I am deeply saddend everytime I hear of another potential pyschotic person who has done the unthinkable and is being locked up in prison for life. I've been there...I was not homocidal or suicidal but could have incidently killed myself or someone else based on what was happening inside my delusional mind while in a psychotic state.

My hope, by sharing this with all of you, is not to frighten you away...It is scary and lonely having bipolar. You are the best and the brightest of people and yet you are to be feared and isolated. It is such a horrible conflict.
And of course the mothers of children with mental illness...truly love them, love their best nature, love the soul that lives underneath the easily emotionally disturbed, conflicted child.

I guess I just wanted you to know that I understand the torment, both in myself and what I suspect is in my young difficult child too.
It just causes so many secondary consequences...I did not even get into my own abuse of alcohol for years or the klonopin I was addicted to for a year just a couple years ago. I ran away, or tried to mask it, and now my young difficult child drinks like a fish too. He could very well be running...I think he's afraid of himself. I think he is afraid to be a dad too.
And now, lil Joey may miss out on having a father because of this illness.
It just goes on and on...It is so very sad.

Yes, I hate it. I really do.
Hugs.
Tammy

 

[hearts and roses]

I have to say that I hate it too. I wish I could pinch myself, wake up and it would all have been a bad dream. It bites.

I'm sorry you're feeling it so strongly right now. Hugs~

 

[totoro]

Tammy thank you... I could have written that. It just plain hurts. I still struggle with the right medication combo. But I am at least aware and try to be aware of the pain I cause others, and can cause myself.