I have been thinking about this post ever since you first posted it, but I had to wait till I got to the library to reply.
In my head I have formed several versions of my reply since then.
First, I do need to say people learn via their experiences. When someone like me or Janna says "never" it is most likely due to our own personal experience. This is different than us saying "never" with no first hand experience. To NOT learn by our own experience would make us idiots. How often do we complain about our difficult children when they do not learn from their experiences or when they do not want to accept natural consequences etc?
I have been involved with some "system" or another for the better of 2 decades. Actually closer to 4 decades.
Myself, my husband, and 2 of my children have been patients in our mental health care system here where we live for 2 decades. So has a nephew (not related to me by blood), a brother and countless other people I am familiar with.
I have seen it at it's worst and at it's best. I have been on both sides of the same "system"- have worked in a professional capacity within and have been a consumer/client of it's services. All 3 of my children have been involved in our school system and IEPs etc. 2 of my children have had "Special Education" here. (oldest and youngest) and 2 of my children have been involved with the criminal justice system here, one as a "criminal" victim and witness in several cases. One as a victim and witness.
In the early 90s, there was a widespread mindset that children could not be bipolar. It was also assumed that any children exhibiting serious signs of mental illness were victims of poor parenting or abuse. Oddly enough my dhs first doctors in our county erroneously disbelieved my husband claim of non substance abuse. They also erroneously disbelieved my claims of non violence between husband and myself.
For 5 years my husband was treated as if he were lying about his symptoms and habits. Our oldest child was treated under the assumption that her parents were violent, druggies, noncaring people. My husband is not violent. Neither me nor my husband even drink, much less do any drugs. My husband's catatonia was a manifestation of profound delayed onset combat PTSD. I realized that after my own research in between trying to raise 3 children, care for husband and work 2 jobs. (and with no internet to assist me)
Early on in treatment for my oldest child I did not realize quite the mindset in our area at that time. Yes, I submitted to a psychiatric evaluation, and yes they drugged me. I cannot say they medicated me becuz from the time they began those pills, my life became h-e-l-l.
My husband was put into day treatment for his catatonia and I was put there- I still do not understand this- "to give me a "day mode" Well, I HAD a "day mode" I had a job, I was the only - yes the ONLY- person in our large 200 person day treatment program with a job- a job I continued thru my 5 very long years in day treatment. Turns out I was also the only one who still had custody of my children, and the only one who owned a home. And yes, one of the very few who did not use illegal drugs or drink.
I was coerced into all of this becuz the powers that be continued to tell me that unless I did this, go to day treatment and take these drugs they demanded I take, they WOULD take my children and outplace them.
Ironic at the time, I also earned "Parent of the Year" from Headstart. I also earned "Employee of the Year" for my outstanding treatment plans, observational skills in the dementia unit and accountings of patients behavior and compliance with careplans for our difficult mentally ill patients.
Imagine the director of day treatment programs face when he realized I was one and the same person. LOL.
By then I had internet access and had read a lot about childhood mental illness. I was also on a comittee at my job (I worked in a county facility and was technically a government employee) about the use of "chemical restraints" - we had a psychotropic medications review board and not a one of our patients could be on a psychiatric medication without having weekly staffings.
Meanwhile I was learning a lot about what was going on in the world re:mental illness in children.
I joined NAMI and CABF and went to conferences and seminars about ADD, ADHD, Traumatic Brain Injury (TBI), Bipolar, schizophrenia etc. SOme of them I went as a parent, some as a nurse, some as an employee in our county healthcare system.
By then I found myself defending my childrens rights in Special Education at school, and questioning the ever increasing negative symptoms in my children, myself and my husband. I was also having CPS visits weekly.
There was an 11 month time here when our county mental health system, and the ONLY psychiatrists and tdocs available for us geographically, the 11 months--- they ran without a psychiatrist becuz the one psychiatrist quit and no new psychiatrist started.
During that time my husband landed in psychiatric hospital, a very odd strange story. He was again catatonic and his therapist suggested psychiatric hospital, so I took him to ER for intake. He was sitting quietly in a chair beside me and the kids (I had no help with our children) and I took the kids to the vending machine and when I looked up, my husband was missing. We had been waiting in ER for several hours. I asked receptionist where he was, she looked me straight in the face and said she had never seen me before, did not know what I was talking about. 5 long days of fear and worry later,- after having been escorted out of ER by security, and filing missing persons on my very ill husband, I found him.........quite by accident- thru someone else in day treatment program who had just been released from phsop. HE told me my husband was there.
Why was my husband phosped this way? The ER staff had decided I must have physically abused my husband for him to become catatonic, so they took him and hid him from me. Not only that but without gathering his history, they also then medicated him with medications he has severe adverse reactions to.
AT the same time I was fighting to find out why my son did not walk properly or potty train. The huge amount of in home "help" we had at that time blamed my parenting. The psychiatrists, tdocs, behavior specialist (with Masters and PhDs) the case managers and facilitators and pediatrician all continued to assume it was inconsistant parenting. ALas, even with years of all these in home services, they had no better luck.
On my own, behind their back I got my son in to SHriners. SHriners found my sons heterotopia and mild cerebal palsy. He was 9. I had been complaining and seeking help for him for years.
By then I also decided to change our mental health care out of this area. Being part of NAMI and CABF and reading from Paplos and Greene, I decided our entire area simply was still stuck in the dark ages.
DOing so caused me to be seen as a trouble maker. It caused a massive increase in CPS visits and more problems at school.
AT that time I got copies of ALL our charts and files from all the care providers we had had for all those years.
What I read shocked and horrified me. It also disgusted me.
I was accused of just about every horrible thing you can imagine. I had followed every single recommendation proposed to me. I followed thru with every single bit of advice. In return I was accused of such ridiculous things, you cannot imagine.
The charts and files were also so erroneous in events and how they happened, listed events that never happened, and entirely twisted ones that did. Nevermind I had submitted to drug testing over and over for presence of illegal drugs and they were all clear, that is NOT what the records said. The records also accused us of sexually abusing our children. Where did they get this idea? our girls wore nitegowns and some idiot decided nitegowns make for easy access!!!!!
The records accused me of Munchausen by proxy among other things. They accused me of witholding medications and fabricating side effects. Nevermind my kids blood levels for medications always came back proper, and very often it was in home caregivers administering medications.
I do not know how many times I tried to discuss Papalos or Greene with the local psychiatrist. I do not know how many times I asked about the adverse effects of ADs....and wondered aloud to my dtrs psychiatrist if the zoloft could have triggered her suicidal actions. Those kinds of questions usually only brought more hard nosed events such as me not being permitted to administer my childrens medications.
Eventually I got my oldest in at a major university teaching hospital.
It did not end there. The local agency was not happy to have me take my dtr elsewhere and continued to call CPS. The school did not like my child being seen out of our area either, and they also called CPS, and our new psychiatrist and ndocs had to submit documentations to CPS that we were being seen and we were complying with treatment. Then the old docs and school decided to try to attack psychiatrists credentials.
When I say "never" it is becuz of extreme and vast negative experiences spanning several years, not just of my life, but of my whole family. My son was 10 years old before he got to spend any time at all without so many in home specialists in his face.
We have been with our "new" doctor approx 7 years now, and truth is my husband and oldest child have never behaved betetr, never performed better- BUT there is negative residual.
Between our mental health system and our school system here locally, our current psychiatrist, my dhs current psychiatrist (now at a VA hospital) all our tdocs and our ndocs ALL believe that my dtr was made much WORSE at the hands of our local school system and mental health system.
Sadly, I saw signs of it starting all over again with my son. I pulled him out of school.
I understand in 7 years things can change. I also understand something else. I worked VERY hard, researched and lobbied and brought info here. I educated our mental health agency, I educated our school district. AT the time of my dtrs needs, there were no accomodations, no placements, no positive interventions.
I DID bring some change here...and I did work VERY hard to do so. I still do not know how I managed to care for my 3 kids, deal with their disabilities, provide the daily care my husband requires, work 2 jobs, and deal with my own disabilities. LOL- I testified at the Pres Comm for Mental Health, LOL- got called in as a last minute speaker, boarded a train on my scooter at midnite to testify in the city at 8 am. Sept 11, 2002. (I remember the date cuz I was skittish to be in CHicago that day)
But you see, now I have a reputation for trying to change things. Many people do not like change. I did accomplish getting some policies locally changed, but the mindset of those professionals takes time to change.
I can and I will say I will NEVER have one of MY children back in our system here.
ANd for those of you with younger children, some of the positive things you do now have access to? Many of those positive things came into being becuz of parents like me who came before you and worked very hard to insitute even while we also were living in the trenches.
When I first started this journey, not one single psychiatrist would give children in our area any other medication except stims. I was early on in the process of getting all these medications available to these ill children. AT that time in this area, children were NOT diagnosis'ed bipolar at all. But given family history and symptoms, I argued pushed and lobbied.
Yes, since then my children are now psychiatric medication free, and that is only becuz of our negative side effects.......
I was in on the ground floor for all these children to get their diagnosis'es and have access to the medications so many of you now use. ANd yes, my child was a guinea pig.
SO please do not act surprised if after all my own personal experience I say "never" about anything.
In 5, 10 or 20 years, I have a feeling you might be standing where I am right now. You are continuing the work we began.
None of it is perfect, it is all hit or miss, trial and error, mental health science and treatment has a LONG way to go.
But at this time it is time for me for my kids to say "never"
I would be a fool not to learn from my own experience. ANd I myself have plenty of experience to base my "never" upon.
Most of the time I post here and very often people find me "odd" I am sure.
DO notice I seldom enforce or deny anything about medications or treatments. I relay MY own experiences. Sadly far too many of my experiences have been less than good. BUT lessons have been learned even by negative experiences.
Mostly what I usually am trying to say is keep your eyes open. Be aware of any risks. If positive and negative experiences will help shape future treatments for children in the future.
It is not somethng any of us would choose, it is just how it is.
But please give me credit for being able to knowingly say "never"
Yes I live with 2 seriously profoundly mentally ill people every single day.
But, I CAN say "never" based on my own personal experience.
and if you carefully read any of my posts, usually I tell parents to trust their guts and hearts. and I tell them to keep their eyes open. you bring people into your home, be aware of the risks. If you try a medication, be aware of the risks.
Truth is most of what most of us here are dealing with still has no concrete answers. Your
& leave a parent with few choices.
