Friday, March 29, 2013

Unhelpful Advice from Professionals

Picture if you will for a moment, a doctors office. A husband and wife sit across the desk from the doctor and he has just told them that the wife has cancer. She will need surgery, weekly doctors visits, daily medication and he is not sure if the cancer is curable. This will be a long road for the couple. Then the doctor turns to the husband and says "You have a lot going on right now with work and managing your diabetes, there is no need to let your wife's issues add to your difficulties."

Now, you may not think that this doctor is all that compassionate or understanding. He basically told the husband that his wife's cancer is her illness alone and he should not be bothered with caring for her. You may think advice like this does not happen often, but it does, at least for caregivers of people with mental illness. 
I talk to people all over the country who are caring for a loved one with mental illness. Parents, siblings, partners, friends. The advice above is a fairly common from some people in the helping professions (ministers, counselors, therapists). I think is unhelpful at best, damaging at worst.

This advice is some form of: "Do not take on someone else's problems" or "You have enough going on in your life already, there is no need to let (your partner, child, etc...) add to your difficulties."

I understand that this is well meaning, as a way to help the caregiver put up some boundaries and make sure that they care for themselves in the midst of helping another person. This advice can also sometimes mean that as a caregiver you do not take on your loved ones insecurities, insulting behavior, or irrational thinking, if they have any of those symptoms. (By the way, having mental illness does not mean everything we do is irrational).

While the advice is well intentioned, it also comes with a whole lot of assumptions, stigma, and judgement. In fact, it is advice that I am pretty sure you would never give to a caregiver of someone with any other illness.

This advice, given mostly to caregivers of people with mental illness, assumes that mental illness is a choice. It assumes people with mental illness are just trying to make life difficult for others and that they are inconsiderate. It assumes that we have no community responsibility to care for people with mental illness, because they bring it upon themselves. This advice leads to caregivers loosing compassion and empathy for their loved one.

So, what can you say instead to get the message of self-care and boundaries across and not use a phrase that stigmatizes mental illness? How about something like: "Make sure to take care of yourself as you care for your mother and if you need help and are overwhelmed, ask for help." Then brainstorm a list of people they can ask for help when they need it. Or say: "I know your partner is saying unkind things to you, which is inappropriate. You do not need to take on their beliefs about your as your own." Suggestions like these do not assume the person with mental illness is a burden who has chosen to be a burden, and whom the loved one (who willingly entered into a relationship with this person) has no responsibility to help care for them. It is also a big assumption to think that the caregiver has no bad behaviors which might be exacerbating the situation, so don't blame it all on the person with the mental illness. You really need to look at the whole system to give good advice.

Often people argue with me that "If someone has mental illness and they have bad behavior, that is an extreme situation and unlike anything else, so you need to just walk away." Untrue. I hear couples all the time who treat each other terribly. Neither has mental illness, but they yell and scream at each other, they blame and shame. Parents call their kids "irresponsible brats" and make them feel unworthy. Parents feel overwhelmed at the daily caretaking of their kids. People with all sorts of other illnesses have bad days where they lash out at their loved ones caring for them. This is all about managing communication and environment to enable the best relationship possible so that the person with mental illness is cared for and loved and the caregiver is not burnt out and they also feel loved.


Rev. Katie

Thursday, March 21, 2013

A Promise For My Son on His Birthday

On this, my son's ninth birthday, I am reminded of the question many parents ask me about mental illness: "Can I prevent mental illness in my child?"

Clearly, we do not know enough about the brain to know if mental illness will ever be preventable. I already had signs of mental illness when I was six years old and now that Jeffrey is nine, I hope that maybe the genes have skipped him, but you really never know. Even though we don't know if we can prevent mental illness, I know that there are things we can do to not make it as likely or if it happens, make it less detrimental. An unsupportive, shaming, and emotionally abusive environment (at any age) contributes to mental illness either by possibly triggering it or making a current illness infinitely worse, so this is my message to my son:

Dear Jeffrey,

I promise to always recognize your inherent worth and dignity. I will not expect you to be anything other than you are, and will always encourage you to follow your interests, talents, and passions in life.

I will never shame you, making you feel as though you are bad. There are only bad behaviors, not bad people. So, if you do something that is not so great, you admit it, learn from it, and move on.

When you act out (and we all do it) I will always first ask "Why is this happening?" and never answer "Because you are a kid/teenager." I will commit to discovering what is behind what is going on so we can fix the situation rather than making accusations about your character.

When tragedy strikes and life is hard, we will deal with it together as a family. I will never hide things from you and treat you as though you can't handle anything. Hiding difficult things from you never allows you to experience your own emotions and deal with life in your own way. It is an insult to you to treat you as if I decide your emotions for you.

As a family, we will practice gratitude and joy so you will always know that even when life is scary, we still have things to be grateful for and things to enjoy. We learn together that joy in life is worth all the risk.

Katie & Jeffrey. Copyright: Jeff Norris
I will not dismiss your feelings and opinions. I will listen to your wisdom. By far, you have taught me more about compassion, respect, love, and justice than anyone else has. I will strive to never invalidate your beliefs, but instead listen to them and consider if they are also something I believe. I will be comfortable with the fact that we will not always agree on everything.

I will support you in following your own intuition and not teach you that you have to do something someone else said based on their age, class, or status.

I will listen and truly consider the situation if you tell me I have been unkind. Just because you are my child does not mean that you do not have the ability to evaluate something I am doing. Your perspective is very valuable.

All things I do, I do to help you on your path in life. If I think something is unsafe or could hurt you emotionally or physically, I will explain to you why. I will always build trust with you so that even in times that I need you to do what I ask, you feel confident that it is because I too have a perspective that is valid and not because I think I have power over you.

When I mess up, I will say I am sorry. I will not hide my failings. Everyone fails, failure is how we learn. I cannot learn to be a better parent unless I admit where I succeed and where I fail. You will not learn to know you deserve to be treated with respect if I never admit to making mistakes.

I will try my best not to project my issues, needs, or wants onto you. I will remember that just because something is a problem for me, that does not mean it is a problem for you. I will try and help you through the problems you have, not the problems I had or the problems I think you have.

I will not let my anxieties limit your life. I will let you have fun, take risks, and explore the world even if I fear that nothing is safe.

I always want you to know that you are never responsible for my actions or emotions and if I ever make you feel like you are, that is wrong of me and unacceptable. I will also never ask you to prove your love to me with the common parental statement: "If you love me, you will... (listen to me, do what I said, wear what I want you to, have the job I want for you.)"

I will strive to practice what I preach. I can not tell you that you have inherent worth and dignity and then proceed to insult myself in a myriad of ways or let other people treat me badly. I am honest with you that this is hard for me and I am still learning.

We will have fun as a family in everyday life rather than thinking fun and joy only happen in the "extraordinary" moments in life because truly the everyday is what is extraordinary.

I won't give you more freedom than you can handle or less freedom than you deserve and have earned.

I will remember that this letter to you is a covenant, a living document between you, me, Daddy, and the Spirit of Love. This promise will change over time as I learn to be a better parent and we travel through life together.



Friday, March 15, 2013

Where Would I Be Without Montessori?

I have been thinking a lot about my Montessori Pre-K through 8th grade education recently in reflecting on how I became who I am today and the work I do in the world. As I look at how people who are "different" are treated in society, I feel so lucky to have gone to a Montessori school and I wonder where I would be without it. Given that I had a different kind of mind and learning style, would I ever have been able to get into college had I not learned at an early age how to learn rather than just what to learn?

Looking back, I know that ever since I was about six years old, I have had ADD, anxiety, and probably even the bipolar disorder. I always knew I was different. I knew most of the other kids did not have such difficulty with math and linear thinking, most of the other kids were not scared all the time, and no one else needed to call home to their mother in order to get through the school day.

In the 1980's had I attended a non-Montessori school which focused on memorization, competition, conformity, and testing, I could have easily fallen through the cracks. I would have been labeled as less intelligent, easily distracted, weird, and a child who would never really do much with her life.

Jeffrey with the Trinomial Cube.

However, none of my Montessori teachers labeled me as anything negative. As Temple Grandin says, I was "different, not less" and that is what I learned from my teachers. If I was struggling, they tried to help me learn using methods which worked best for me. Usually that was through tactile and visual learning. It always surprises me that some of my favorite "work" in the classroom was all math related, even though I am horrible at math. I loved the Bead Bars and the Trinomial Cube and my son loves Test Tube Division (he has his father's exceptional brain for math though.) So even in my worst subject, there were ways to teach it that I was actually interested in. Montessori taught me how to be creative in learning. It taught me that even if I could not learn something in the way everyone else did, I could figure out how to learn it anyway. Basically, Montessori taught me how to be resilient, which is how I was able to figure out how to get through high school, college, and graduate school all while having undiagnosed mental illnesses.

I often hear people say that they don't keep their child in Montessori past kindergarten or that they don't try Montessori at all because they think the kids then don't know how to go to a "normal" school afterwards. I went from Montessori to a competitive private high school and did just fine. In fact, I don't think I would have done well in high school had Montessori not already taught me that I was smart and I could accomplish things. Montessori defined me by my abilities and not by my limitations.

Most importantly though, Montessori taught me empathy and compassion. The Montessori principles of focusing on what you are good at, accepting people as they are, and seeing the potential within teaches empathy. Those principles also take away the shame and judgement often associated with mental illness and other brain disorders. If we as a society were all taught these principles, the world would be a far less judgmental place.

Dr. Montessori said: "If we have neither sufficient experience nor love to enable us to distinguish the fine and delicate expression of the child's life, if we do not know how to respect them, then we perceive them only when they are manifested violently." This is basically what society does to people with mental illness. They see the "bad behavior" rather than seeing the actual person. This means they then do not help the person find their inner self and how to live to their greatest potential. They see the manic episode rather than the person struggling to do the best they can who happens to have an illness in their brain- which we could help them manage if we cared enough to get to know them and find out what helps them.

There are many ways in which I think the Montessori method and principles help those of us with brain disorders, so you will continue to see these concepts on my blogs. (There is already a bit about Montessori based dementia care on Moving in With Dementia.) Mainly though, I think Montessori has taught me that no one is "hopeless," no one should be left on the fringes of society just because they are different. Everyone deserves dignity and respect and to live a life of meaning and purpose. Montessori led me to fighting for my life despite my illnesses, and it also led me to being a minister in a faith that has the same values.


Rev. Katie