Thursday, December 31, 2009
I have a beautiful horologe or hourglass filled with black sand. I imagine that the sand comes from Kaimu Beach. Hourglasses were used both to keep track of time and for navigation. Although assumed to have been used in the 3rd century and carried around as timepieces the first evidence of the existence of the hourglasse was in 1338, depicted in a fresco by Ambrogio Lorenzetti. Ferdinand Magellan kept 18 hourglasses per ship as he navigated the globe. How did I learn this? Lost in Wikipedia of course! Fascinating!! My hourglass does not help me with navigation unfortunately but it is a constant reminder for me to slow down. When it was new to me I used it daily to block an hour of uninterrupted writing time. Over the years that ritual has slowly unraveled as have many resolutions made at the end of years past. I do love this time of year because, at least for me, it is a time for renewal and new goals, some which will be met and some not. Gradually over the years it seems that I slowly meet a few more. Time to turn the hour glass over again.
Temperance bearing an hourglass; detail
of Lorenzetti's Allegory of Good Government,
Wednesday, December 30, 2009
Soon the sun was out and coming through the cedars and firs.
Stop, stop and listen for the bough top
Is whistling and the sun is brighter
Than God's own shadow in the cup now!
(The Blackbird of Derrycairn, Austin Clarke, 1896-1974)
Tuesday, December 29, 2009
Wednesday, December 23, 2009
Wednesday, December 16, 2009
A special place
Mental health conditions can strike any time of the year and research indicates that depression is particularly sneaky this time of year. A new diagnosis of any mental health condition is particularly difficult and unsettling but perhaps even more so for adolescents and children and the families that make this journey with them. Bipolar disorder can arrive quickly and with terrifying symptoms for some young people. It can come with feelings of extreme anxiety, depression and mania that can include anything from racing thoughts to hallucinations and psychosis. The diagnosis is seldom simple. There is no blood test or CAT scan that can simply and positively identify bipolar disorder. This illness can look like attention deficit hyperactive disorder (ADHD), depression, post-traumatic stress disorder, conduct disorder and even schizophrenia. Typically a diagnosis of bipolar disorder, even in adults, is a "wait and see" process and the initial diagnosis is terrifying for all involved. The diagnosis is critical for the treatment but treatment can't always wait for the diagnosis. Often the effectiveness (or lack thereof) of a medication provides information to confirm or dismiss a diagnosis. It is a very difficult and often lengthy process. I am reliving our own journey as I hear from parents, colleagues and friends who have children that are currently in the midst of an initial diagnosis of this illness. I remember the fear and anguish just hearing the term "bipolar disorder"; trying to make sense of it while not completely believing the diagnosis. My mind was racing, "Not my daughter." This cannot be. I know about bipolar disorder. I teach about it. How could it a) happen to my child, and b) how did we miss it? And...what could we have done to have prevented it? I hear all of this and more from the family members that have shared their own stories with me in the last few weeks. I wrote a previous post, "You need to step back..." sharing my thoughts on how to support someone who has a loved one in the middle of a mental health crisis. Today I would like to offer my thoughts to families who are beginning this "vast journey of ours" as my daughter calls it. It will get better but it is difficult, terrifying, and fills a parent's heart with grief. With care I offer the following thoughts:
If your child or adolescent is hospitalized (once you can take a breath and think straight) meet with the doctors and the care team. Get to know the nurses, hospital assistants, residents, social workers and therapists. Be there as much as you can to learn all you can, be aware and part of any decisions and assure your child that things will get better. If your child is psychotic he or she may say things to you that are completely unnerving and frightening. It is the illness and may have little to do with reality. Don't take it personally. Stay calm (at least in front of your child).
Meet with your own family team. Define "family" as those in the inner circle that can help support your child. Tell the truth. Divide up chores. Take turns being at the hospital or staying with the child. When one member of the family team is ready to crash from exhaustion and worry have a plan for someone else to step in. Assure that the younger children are involved in a way that is age appropriate. Kids know when something is going on and their imaginations are often worse than the reality.
Explain to others in ways that they can understand. Share as much as you feel comfortable sharing but imagine that your child had diabetes and was hospitalized in critical condition from this illness. What would you tell people? You have no reason to be ashamed or embarrassed. I decided to tell the truth from the beginning and, yes, there were awkward silences when someone asked me, "Why is your daughter in the hospital?" and I said she is in a severe depression and is being treated for bipolar disorder.
Ask for help when you need it. Someone needs to contact the school. Someone needs to talk to the insurance company or help sort through the medical paperwork. If there are other children in the home someone needs to assure that they are fed, clothed, loved, comforted, tickled, read to and played with. Sometimes you might need someone to tell others about what is going on because you just can't tell the story one more time or without fear of falling apart forever.
Accept and reject advise as you want and need to do so. Advise comes unsolicited and is sometimes comforting, sometimes helpful and sometimes scares the hell out of you. Often it reminded me of stories mothers tell a newly pregnant woman. Sometimes it becomes "can you top this horrible story" and it does you no good to listen. Practice saying, "I understand that you are trying to help but I really can't listen to any tales of woe or tragedy right now. I need to stay positive."
Be brave, consistent and on top of things with your insurance company. We asked for lots of treatment and care that wasn't readily offered but once we asked for it things fell into place. I cajoled doctors into writing letters of support for things we needed (I was actually the ghost writer on a couple of them at the doctors' request). This included longer time in the hospital, more sessions with a therapist, a different drug (non generic) or a doctor outside of our designated list of providers. Find out if your insurance company has a case manager for critical or chronic illness. Our insurance company did (thank you, Ruth, you are a saint!)! Ruth was a former psychiatric nurse and provided us with so much information and support that ultimately helped our daughter become stable and likely saved the insurance company money. If you do not have insurance meet with the social worker at the hospital and keep asking questions. If something doesn't sound quite right, ask more questions and bring someone with you to help figure it all out.
Let your child's school know what is going on. If this is the first time your child has been hospitalized or newly diagnosed you should ask for a 504 Plan to assure that accommodations will be provided as necessary. If your child misses a lot of school or falls behind in her or his academics you can make a referral for special education assessment. This does NOT mean that your child will have to be pulled out of her class and into a special education room. It does mean that he will have legal protection to assure that services and support are offered to assist him to progress academically and emotionally/socially/behaviorally in school. The school will use the diagnosis from the doctors to document a disability and may do some additional testing as necessary. This does not need to happen right away if your child is not stable but I urge you not to wait too long and do alert the school as soon as possible. That might be a job for someone on the family team!
In a mental health crisis parents aren't thinking about such things as an advanced medical directive but do remember that when a child turns 18 you might still be paying all the bills but you won't have any say in their care or privy to information about their medical treatment. Once your child is stable talk about this and investigate advanced medical care directives in your state. Have this in place by the time your child turns 18.
Find the time to take care of yourself even if it appears to the outside world that you are doing marvelously well. From my own experiences I can honestly say that I waited a little too long before addressing this and it took a toll on my health. I kept up a good front but stress does have a way of eventually reminding you to take care of yourself...when your body gives you a big wake up call. I am so glad to be healthy and centered now but it took some effort.
Finally, every one's experiences are different and we all come from a vastly different place, yet I believe we have something in common. Parents would do anything to heal their child and when you can't it hurts beyond words. I humbly offer hard earned "advice" from our own experiences with bipolar disorder and my training and experience working in the field of special education. It is complicated and frightening and not something that most of us were trained to do. Even for those of us that have knowledge and resources find the world of mental health care for a seriously ill child overwhelming. There are many, many resources available and we have listed some of our "favorites" on our website. I hope that there may a small piece of information that makes things easier for parents whose child is in the midst of a mental health crisis. It will get better. Stay hopeful. I include this picture to remind you to keep a special place and time in your memory ........
Friday, December 4, 2009
Wednesday, December 2, 2009
Monday, November 23, 2009
Sunday, November 22, 2009
Sunday, November 15, 2009
Friday, November 13, 2009
Sunday, November 8, 2009
Wednesday, November 4, 2009
(photo by Jordan, beautiful grandson)
Sunday, November 1, 2009
Saturday, October 24, 2009
Saturday, October 17, 2009
Tuesday, October 13, 2009
Tuesday, October 6, 2009
Monday, August 17, 2009
Sunday, July 26, 2009
Wednesday, June 24, 2009
Sunday, May 31, 2009
Sunday, May 17, 2009
So it isn't surprising when we hear from people in our audience about their own struggles with mental illness. These people are almost always professionals, psychologists, social workers, teachers, and counselors. Yet they share their fears of divulging their stories, let alone their needs, to their colleagues and employers. They send emails and notes telling us that they are so glad we are brave enough to talk about "it". They tell us they have kept silent for years for fear of misunderstanding or rejection because of their illness. If our audience of professionals that work in the field of education and mental health are afraid to share their story how much more difficult is it for someone that may not understand their own illness or have people around them that don't even know what a diagnosis or treatment plan might mean? It is heartbreaking to hear the stories of fear and hopeless- and helpless-ness. We have a long way to go, don't we?
Invisible City (Jordan Swain)
Sunday, April 26, 2009
Monday, April 20, 2009
Sometimes the movement forward is a single minute at a time. Three years past the terror of an unknown illness taking over my daughter's life and changing all that we thought we knew...life is better. Life is stable as Linea stays within the parameters of a healthy life, sometimes up, sometimes down and sometimes bobbing on the edges but she is managing and in control of her own life. It would be easier to try and forget those years of anguish and worry and pain. But I think it is important to never forget. Never forget the closeness and the love of family as we held on to each other, we five (Linea, Linea's mom, dad, sister and brother-in-law), her grandparents, aunts and uncles, cousins and friends. Things were clearly in perspective from most important to least important when life was falling apart. Little things mattered. A sunny day on the lawn of Harborview Medical Center. The quiet sanctuary at St. James Cathedral. The song Blackbird played to me in a psych unit on Mother's Day. And finally, a day on the beach in Mazatlan. I don't want to forget. I am thankful.
Sunday, April 19, 2009
I ramble. My mind rambles. I waited too long to write this because I did not know what to say, likely for the first time in my life. Words are my business. My faith in man and woman-kind has deepened. As I wrote previously, I am humbled.
Tuesday, April 7, 2009
Meander from my thoughts of Nicaragua for a day or two and discuss lucky charms.
Do you have a ritual to bring you luck or keep you safe? Here are a few to try courtesy of my children and my own childhood.
While going through tunnels: Make a wish while holding your breath and keeping your feet off the floor of the car.
Whisper, "Parking goddess lift your face and find me a close parking space."
Burn green candles for money.
When the digital clock reads 11:11... Make a silent wish.
When you see a small pony, yell, "Eee-oooo-hypogus" (WHAT?).Worry about what can go wrong hard enough and maybe it won't....oh-oh, that one is serious. It was brought to my attention via my daughter's psychologist that I may use this technique as my own personal amulet. Hmm, not very productive, do you think? Will it keep my children safe? My family? Illness and accidents can strike without any warning or we can keep guard and worry. Illnesses that strike the brain can be sneaky. But I am trying something new. Trusting my daughters to stay as well and healthy as possible and to ask me for help if they need me. That is the talisman I am currently trying on for size. If there happens to be any readers out there...do you have a lucky charm?
Wednesday, April 1, 2009
Sunday, March 29, 2009
Tuesday, March 17, 2009
Carrie is a middle school student that cannot speak in school. She is able to speak to her family but not her teachers or peers. She listens, she writes, she works in groups but she does not talk. Her teacher (my student) is completely supportive and accepting as she communicates with Carrie and carefully puts her with other students that treat her with respect. Carrie comes to school to learn; the school is helping her and waiting patiently for the day that she might share her thoughts with her voice. But, if not, she continues to receive a great education.
J is a thirteen years old and struggles to write at the 2nd or sometimes 3rd grade level. There is nothing wrong with his ability to learn; he has a disability in written language. The students write in their journals every morning before beginning their lesson. My grad student was amazed that J had increased his writing from one or two sentences to an entire page. She asked if he was willing to share his writing with the small group of students. He said he would and haltingly read his journal, describing his fear as he went out with the garbage before coming to school and found that his families' car had been broken into and the stereo torn out. He read how he ran back into his house to tell his parents and that they did not believe him at first. He retold the sad tale of his morning ... reading his own writing. It was important to him and relevant to his life. The teacher gave him the respect and support that he needed to find his own words on paper.
Nate is also in middle school. A clumsy, crazy and unique time of life for a child moving to adolescence and on to adulthood. My grad student has a class of unique and wonderful students with a range of severe to more severe disabilities. She manages a crew of paraprofessionals that teach and care for these children with respect and appreciation of their own individual stories. I observed "award time" where my student announced three or four awards for her students that had done exceptional work ....like making it to classes on time, sharing space with other students; seemingly small accomplishments but huge to the individual kid. Nate's name was announced and he went mad with joy. He leaped into the air and hugged each teacher in the room (he stood in front of me with a huge grin and debated whether to hug me or not, he didn't!) and then ran in ecstatic circles waving his small piece of paper in the air. Someone watching through the window would have thought he had just won American Idol. It was wonderful and life-affirming to witness his happiness for his recognition for doing something small.
If you know a special education teacher tell them they are doing a great job. If you know a child or young person in special education find time to share their accomplishments. Each of the students that I saw in the schools will contribute to our society in so many ways. Work, school, friendship, inspiration, and sometimes a nudge to others to take joy in the small stuff.
Just a cool picture taken on the Mississippi River.....
Monday, February 23, 2009
Wednesday, February 18, 2009
Monday, February 16, 2009
Tuesday, February 3, 2009
Occasionally the universe (however one may define universe!) provides a gift and reminds us to live in the moment. On a particularly horrible day I experienced a tap on the shoulder that literally brought me front and center to the present. My 19 year old daughter was in a psychiatric unit of a trauma 1 hospital in Seattle, newly diagnosed with bipolar disorder, preparing for a series of ECT treatments. It was Mother's Day. She is a musician and had just played and sang "Blackbird" for me as my gift when she suddenly crashed again, back down into her depression and asked us to leave. I was about as low as I had been over the last 6 months of hell. My husband talked me into taking a walk through an old growth forest arboretum. It was an absolutely beautiful day and suddenly I had this feeling of smallness in an ancient world. I was simply in the moment of that beautiful place, a tiny speck on our earth's curve. I relaxed, I let out and took in a breath of air. I was in that moment, at peace.