Stigma Affects Medical Care

Oh yes it does. I watched my mother try to get help for herself on several occasions, but she was not believed. She could have bled to death until her psychiatrist sent her to a friend of his who was a Gyn. He scheduled her for surgery the following week after meeting her because her hematocrit was getting dangerously low. What did they find when they did the hysterectomy? A uterus filled with fibroids. I guess those were “in her head” too.

My son is presently without health insurance (yes, I’m petrified) and having some unusual body aches. I took him to the doctor. Before she even touched him, she made the pronouncement that this was common with psychiatric disorders and that she didn’t really see or hear anything that would lead her to believe otherwise. I have to wonder how many folks with bipolar disorder have died because a doctor couldn’t see past their diagnosis.

I told her that I had never gone wrong trusting him when he tells me he is unwell. They do not see him in this office displaying hysterics, he is only there when he is very ill. I don’t remember the last time I was this angry. When we do get to the bottom of whatever is ailing him, rest assured, I will be writing this doctor a letter.

Transition Into Adulthood – Tightrope Walking

Parenting or enabling?

Teaching skills or micromanaging?

Hands off the meds or missing meds?

It’s never easy parenting a young adult. There’s a lot of tongue biting that goes into the exercise, having done this once before. With this disorder in the mix though, things get murkier. Experience with my son is the only teacher I really have. I listen to what other folks say about their children with mood disorders and we frequently have different experiences, some are common, many are not. I do learn from other parents, but I find myself adapting for my son’s situation. Is that enabling? I don’t know.

On Hitting the Skids – Medication Induced Cycling

Things are going along just fine, everybody’s happy, things are getting done, progress is being made and then suddenly it’s not. A rotten cold that gets to the lungs and asthma flare-ups mean using breathing treatments or steroid inhalers. Sigh. I have asthma and this stuff makes me feel jittery. I can’t imagine how it makes my son feel. Sleep has been at a premium so now we are starting the process of finding middle ground all over again.

As of last night he was rapid cycling. On one hand he had a project he wanted to work on, then he was feeling lonely and teary, then he was struggling to sleep, this morning I dread trying to get him out of bed.

I know a person who was living with bipolar disorder and she was just fine. Then she had an asthma attack and now she struggles to keep a job and depends mostly on her spouse for their livelihood. This frightens me.  Last week we were putting together various things for the coming semester of college. Who knows now if he’ll just be sitting here waiting once again for his life to begin?

Building a Relationship With Your Child That Can Lead to Wellness

First of all – you are the adult but you must do the impossible. You must deal, on any given day, with behaviors that may not make sense to you, try to be compassionate yet keep boundaries, have expectations without being attached to them, and in the middle of all of this find time to take care of yourself and all of the other million things that make up a life in this fast-paced society in which we live.

While this is going to sound counter-intuitive, the first person to get settled and stable is you and your spouse. If couples or family therapy is what needs to happen for you both to get to a calmer and more harmonious place with your child and with each other and your child’s illness, then that is what you will need to do.

In an earlier post I mentioned the work of Miklowitz and George and their discovery that highly emotive families had a higher relapse rate than those who do not respond to life with a heightened sense of emotion. This does not mean that you will never get angry or say something that you will regret later – given that you are a human being – that is asking too much. However, what it means is that by building your own skills as a parent and as the parent of someone with bipolar disorder you put yourself in a place where you can give the needed measured response. It also give you the distance (or as some recovery groups say – detaching with love) to take a step back and say “now what is really going on here? Does this behavior really have anything to do with me?”

During one period of my son’s illness, he was on the verge of being hospitalized. I felt that if he would struggle a little more with what he was going through, he could pull himself back together (not to be confused with pulling oneself up by ones’ bootstraps). What he needed to do was to get up and take a shower, eat breakfast, take a walk, and disengage from some things he was doing that were unhealthy (staying up all night, not turning his computer off, etc.). He looked like a homeless man – unshaven, dirty clothes, etc. Yes, I wanted to take him by the shoulders and shake him. There were things that I thought, that I did not say. Instead, I learned to give him my list of expectations and have a consequence for the ones that he did not meet. We started off with the simple get up and take a shower and put on clean clothes. If he did not do this – I took his keyboard and laptop away. He could earn them back with said shower and clean clothes. This did not require me to be angry and to try to control his actions with my words. It was behavior modification for both of us. He was not doing this because I’ve been a bad mom and these behaviors did not have anything to do with him being oppositional (not that they can’t). This was not a reflection on me so to respond angrily or with slights would have done nothing but make it all much much worse. I did have to place some boundaries yet have realistic expectations so that wellness could be reestablished. I continued to add an expectation with consequences every few days until things normalized.

Please know that I did not do this intuitively. We did go to family therapy, we did go to our individual therapists to work through this. This is a process of understanding and implementing with a whole bunch of self-forgiveness for not knowing something that no one trained you to know or do.

But finally, while we frequently must temper our expectations for our child, it does not mean that we have to give them up. And of course, we must not give up.

On a recent visit for a physical, my son told his doctor that he would not be alive if I hadn’t been as persisitent as I have been. I am not saying this to pat myself on the shoulder, I am saying this so you know – that in their heart of hearts they know and do appreciate your efforts. Do keep that in your heart and mind so you can go forward doing what feels like an impossible job, but is not. There is always hope.

The Long Road and Finding Gratitude

My son will be 19 this month. It has been a long road. I consider us lucky all the same. A friend of mine said, “are you kidding? Lucky?” Not kidding, lucky. The nature of this illness and the potential for co-occuring conditions and disorders is so high and so difficult to figure out. We were lucky in several ways:

• Lucky that the second psychiatrist “believed” him and decided to begin treatment
• Lucky that a co-occurring condition was not a major part of his particular manifestation of this illness
• Lucky that the meds he now takes work relatively well and that no side effects are making themselves known

These are just three examples of why we were lucky. Those of you who’ve been through more with your child than I have know what I’m talking about. If you live in a part of the country where there are few options for psychiatrists, life can be very hard. If there are no facilities that you trust if you child needs to be hospitalized, then life can be very hard. Lucky that the meds he takes are not causing life-threatening skin rashes, weight gain, sleepyness, nausea, dizzyness, dry mouth, etc.

He is by no means out of the woods, one never really is with bipolar disorder, some folks just simply have an easier time of getting stable than others for so many reasons. But I am grateful that he is still alive, still working toward living a full life, and that we have moments of normalcy. So many do not. I keep those people in my heart, send good thoughts, and pray for research that will open more doors.

Person Centered Language – Why It Matters

After attending the annual meeting of the Depression and Bipolar Support Alliance annual conference last year (2008) and hearing a talk by Stephen Propst on person centered language – I’ve been doing some thinking.  Does my son have bipolar disorder or is he bipolar? To the casual listener it doesn’t sound like too terribly much of a difference now does it? However, just scratch the surface of the meaning of words and it becomes immediately obvious. He’s not bipolar – he’s Chuck! Chuck has bipolar disorder. He also has red hair, freckles, a winning smile, quick wit, intelligence, musical talent and is a pretty good cook. All of these things make up who he is, not any one component describes him exactly because he is much more complicated than that. We are all more complicated than that.

Ever had anyone find out something about you that they did not know before – say, in spite of knowing you for a very long time? They sound surprised to find out that you speak fluent Mandarin? Or that you are a member of Mensa? Or that you are a killer seamstress? When this happens don’t you feel just a little offended because they look at you like you’re from another planet as if they didn’t know you? As if just by not having that one piece of the puzzle they act as though they’ve been fooled? In general humans are not that easy to nail down. We are complex, we are able to learn and grow. I am not defined by my job. I am not defined by my religion. If I tell you something about me that you did not know before, you may think, “Aha! I knew it.”  But the truth is, you don’t.

I’ve heard people say – “oh bipolars do this, bipolars are always emotional or get angry easily” or whatever. I appreciate that on one level we are trying to understand. But on another level, we are trying to make it easier for ourselves. If I can quickly define you I can relax and act on my preconceived notions, even if they are wrong.

It is only one piece of the puzzle, by trying to nail down my son with a diagnosis, you limit him and you limit yourself  – and it’s also, simply put, incomplete and perhaps even inaccurate. We cheat ourselves and everyone else by that kind of thinking.

Language matters. Stigma is real.

The State of Mental Health Services – Sigh

Last night my daughter sent me a text to tell me to tune in to NPR to listen to the Fred Friendly Seminar on Mental Health Care – I eventually had to turn it off. I already know the reality. Basically, mental health care administration in this country sucks.

The panel of experts (two of whom had schizophrenia – a lawyer and a psychologist) traced two hypothetical mental health consumers who entered “the system” – I found myself getting anxious just listening to the travails of people who needed help.

Some of this I witnessed as a young woman trying to find help for my mother after the state mental health hospital was disbanded and inmates (yes, that’s what they were called) were remanded to community mental health centers. Most states were woefully unprepared for this influx of a population that required extensive services.  Just finding a bed was a challenge. When my mother would occasionally decide that her meds were just fine, thank you very much, and the inevitable delusions and hallucinations began, we could pack a bag, get in the car and drive on over to Milledgeville with a brief phone call saying we were bringing her over. After the state hospital services were greatly reduced this was no longer an option – just finding a bed within the county was a nightmare. Then follow-up with an overburdened county psychiatrist who now had more patients who were dismissed before they were ready to be released so the next truly ill individual could find a bed was less than adequate. This was frustrating at best but actually dangerous. It remains to be so.

Most counties do not have the tax money which provides facilities, well-trained and empathetic personnel, and wrap-around services. In Georgia, the state was threatened with takeover by the feds if they didn’t clean it up and quick. Why? Because of the number of cases of abuse and out and out neglect. Dorthea Dix would be mortified.

I acknowledge that this is a complex question. But really, what we are talking about here is a human rights issue. Just because someone has a mental illness does not mean that they are sub-human. Sadly, this is just how many are treated.

Working With Your Bipolar Teenager

In David Miklowitz and Elizabeth George’s book – “The Bipolar Teen…” there is much discussion about highly emotive families and relapse. If you’ve not figured out that your teenager is a raw nerve, then take my word for it. Have you ever watched a dog that you think might be asleep until you realize that their ears are actually still at attention and turning toward any little noise? Such is the case with many teens with bipolar disorder.

Sometimes by just raising your voice, things can get totally out of hand. I’m not saying it’s your fault, just acknowledging the reality of the matter. Anxiety frequently goes hand in hand with bipolar disorder. Raising the level of anxiety does no one any good. I hope you’ll read this book, it is the one I kept hoping I’d find when I was trying to learn about this disorder in teenagers.

Listening carefully to what your teenager is saying may be one of the best tools you have available to you. I wish I could be 100% at this, but I am human. Most of the time I think I do pretty well and he knows he can trust that my reaction will not be over the top. I honestly believe this is the first step in working with your teenager. They need to be able to trust you in return. It is difficult to not lose it over some behaviors, I admit, but there is a payoff. Slow and steady wins the race.

Next

Oh would it be that the only thing a parent might have to do under these circumstances is to seek treatment for one’s child. There is life to be led at the same time. School, work, extracurricular activities, home life, other children in the family.

School was as challenging for us as trying to get a diagnosis or find the right treatment, as it is for many children with special needs (don’t care for the word disability). School systems are not set up nor are  most teachers well-trained enough to integrate special needs children into their classrooms. At the same time that I acknowledge this, I also know that an incredible amount of money is spent training teachers and school administrators to not meet the needs of special needs children. There are workshops on how not to get sued, how to dole out the minimal IEP or 504 plan, and now there is complicity in scooting these children out the door of high school well before their graduation. There are few enough of these special needs children that school stats on dropouts are not significantly affected. New laws should be in effect now to prevent/punish those offenders among high schools who follow this tactic.

As I said earlier, my son’s elementary school did everything possible to not help him. Or as he said one day as we were driving by it a couple of years ago, “you know, they didn’t do me any good.” Indeed.

I was told that his handwriting problems would resolve with maturity, that his inability to concentrate was my fault – I needed to provide more structure, etc., etc. Shame on them. Shame on them. They completed his handicap by not providing interventions when these interventions would have done the most good in early childhood. But, it saved them some money. In the meantime, raw talent and intellect has gone untrained. I am grateful that our local community college remains solvent. I suspect that it will be there where he finds his footing in all of this. I certainly hope so.

If you do not know of Wrightslaw – please do your child and yourself a favor by visiting them online. If you are at the beginning of your journey pull your nickels and dimes together to go to one of their workshops to learn what you need to know, or if you can afford to hire an advocate for your child to help you navigate the school system then do just that. If you are midstream or closing in on the end of public education for your child you may find the help you need as well through this organization.

Because we are worn out with taking care of our children: getting appointments for therapy, psychiatrists, school meetings while trying to work and perhaps take care of other children – we are vulnerable to their training from these workshops. And because we are trusting and have not learned the laws and the lingo we fall into well laid traps. If you’ve been trying to drag your child out of bed (because so many children/teens with bipolar disorder are difficult to wake up in the morning – it’s not just your child), or because we have been paying attention to the mood charts, medication adherence, and  the insurance stuff, etc., etc. and you walk into an IEP meeting thinking that the school will have your child’s best interest in mind – they are THE SCHOOL right?  – then you will find yourself angry at a certain point when you realize what could have and should have been done.Arm yourself in advance, do not sign anything the day of the meeting – go home read it over, think about it and make changes as you see fit.

Of course there are schools out there who will do what they can, work to do the best for their student, and have an enlightened approach to make sure that the child is educated properly. However, there are entirely too many out there who see it as an expense, a bother, and there are many folks who are well-educated who simply do not “believe” in mental illness. Sigh. I keep hoping we can move beyond this kind of ignorance, but for the moment this is what some of us will run into as we strive to help our child receive a free and appropriate education – (FAPE). More to come on advocating for your child.

On Trusting What You Know About Your Child and Trusting Your Child to Tell You What You Need to Know

When Chuck was a baby, he had frequent ear infections. I wore a path to the pediatrician’s office. One morning after having been up all night, we arrived at the doctor’s office, and finally we were taken to the exam room. The doc came in took a look at his ears and said, “yep, another ear infection.” Bleary eyed I said that I kept thinking that when I brought him in, he, the doc, would tell me that I was wrong. He said something I’ll never forget. “You know your child better than I do and I trust my moms to tell me what I need to know.” We no longer see this doctor because our insurance changed, but I sent him a note a couple of years ago to thank him for saying that to me. It made all the difference in getting my son the help he needed. I know what I know about my child. I may not know the cause, I may not know the cure, but I know when he needs help and I know when something else needs to be done in his treatment.

I’m not a recalcitrant parent. I listen to what the doctors and therapists tell me and weigh it against what I know and what I am comfortable with. I also have learned to trust my instincts on whether I am talking to the right clinician for my son and even more importantly, I’ve learned to trust his. That’s tricky given the mercurial nature of bipolar disorder. I am fortunate, he is fortunate that we have worked out a relationship that allows this to be. Sometimes I override his objections. But he has to be pretty ill for me to do that.  I’ll post more soon on forging a “therapeutic alliance” with your child.