Thursday, January 28, 2010

My Story

We (the daughter and I) have decided to make February a month of sharing stories to fight stigma. So, along with our newly posted video on YouTube we are going to start sharing our stories and learnings on our blogs, starting conversations about it on our Facebook and Myspace site and commenting on it on our Twitter page. So, visit us, chat with us, and learn with us. Here is a piece of a very long story...

I had lost a brother to suicide. I knew to keep careful watch on my children’s mental health. I was qualified to do so. I dedicated 10 years of my life formally studying child and adolescent disability, and emotional and behavioral disorders in bachelors’, masters’ and doctoral programs. I have a vast amount of knowledge based on education, research and experience in the field of “transition services” for youth with disabilities. In other words, I know stuff. I have spent hours and hours teaching and working with kids who are failing in every aspect of their life. I have talked to parents as the wise woman who offered words of support and advice. I teach educators and school psychologists and school counselors as a professor in a graduate program. I teach them the skills to assess, educate and support children and adolescents with disabilities. I thought I knew a thing or two. I was not prepared.

Life was moving along and I was in a good space five years ago. Our youngest daughter, Linea, was off to college to study classical music performance and our oldest daughter was happily married and developing her own business in the world of art. My husband and I were ready to experience the empty nest. I didn’t know enough. I was not prepared.
Less than two years later I was flying back from Chicago one more time and I was crying. I sat in my seat and without making a sound the tears ran down my face over Minnesota, North Dakota, Montana, Idaho and Washington. Why now? We had brought Linea home from college with a severe depression. She was hospitalized less than two months later. She was suicidal, she was non-responsive to medications, she was ill beyond my wildest imagination and all the training and education and wisdom that I might have thought I possessed seemed worthless. She dug her way up and out of that depression but to a flat and grey place. She was back in school nine months later. And then she was hospitalized again. Her meds were changed. Her treatment plan was all consuming. She went back to school after each set-back and she continued to talk to me with honesty and love and a dim spark to be well and to live.

I had not let go through all the days and nights of this battle. Her dad and sister and our family spent those months in a place of hell but I fought with all my might to keep her alive. On that flight home from Chicago after she was finally back in school it hit me hard that I could not fix her pain. I couldn’t stop her thoughts or change what she did with those thoughts. I couldn’t be with her every minute and I couldn’t get into her brain and chase the terrorizing illness away. I could be there for her and I could be physically with her but I could not be in her. This was her battle and we could only support her in that fight. We could bring her home from college, we could hospitalize her and we could find the very best doctors in two cities more than 2,000 apart from each other but I could not keep her safe every minute of every day. I felt panic and terror. I sat in my seat for the five and a half hour flight and I thought and thought about this. I went around and around in my head and finally settled on my trust in her. Hadn’t she proven herself a valiant fighter? Hadn’t she asked for our help to hold her and be with her and stay close to her when she was near losing the battle? By the time the plane landed I had it figured out in my own mind. All I wanted was for Linea to find peace and happiness. I wanted her sense of humor and her excitement and joy in living to surround us all. I let go of my fear of her and me and our family being judged by others and…I let go of my pride. I know that everyone who truly loves Linea would not judge her. I am even prouder of Linea than of her gifts. I am humbled by her strength. I can breathe. Perhaps our story will offer hope to even one family.

"self-portrait" taken in hotel bathroom,
(presenting at conference in Savannah)

Wednesday, January 27, 2010

A Trail of Love

If you read my daughter's blog you know that we have lost a wonderful man from our lives. Most significantly he is missing from the lives of his three sons and his beautiful and talented wife. As well, by one degree of separation, a 3-month old baby left his family behind yesterday without warning or understanding. Death is a gentle and sometimes harsh tap on the shoulder reminding us to savor each minute, each moment of joy with our families and friends. It is a reminder not to fumble through life without paying attention. This morning as I was rushing to leave my house for campus I stopped and noticed a beautiful morning. I was thankful that I could see so much of this incredible world from my own front door. I know that there are millions and millions of people who will never see the sight of these magnificent cedars that grow on our property. I looked up and around and I remembered a life that has left us but leaves a trail of love and family behind as he moves on into the next space. I hope you can view the video and that you take a moment to sigh and be thankful for a moment in your life. Yes, I know I shot it sideways but who knows from what angle someone might be looking down upon us?

Sunday, January 24, 2010

Ahhhhhh, Parents!

I have been away for a week providing training and technical assistance to a school district in Hawaii. Sounds like a plumb job and, yes, the weather was beautiful, the sea is always inspiring and the flora and fauna are breath-taking. The special educators have the same challenges and more that we have on the mainland. But on my flight I was thinking about the parents who are not able to take a six hour flight to paradise or take even an hour to relax and do something just for them. I wrote the following somewhere over the Pacific Ocean. The picture above is taken out the window. See the reflection of the plane in the water?

I have been thinking a lot about parents, particularly parents of children with significant disabilities. As a professor in special education I define significant disabilities as serious or severe health conditions, difficulty or inability to speak, difficulty communicating basic needs, inability or difficulty with everyday life skills such as feeding, toileting, and participation in leisure time activities, and limited fine and gross motor skills. I also include children and adolescents with severe mental health conditions that make a normal life impossible. This definition is not inclusive but I think you get the idea. An expecting mom and/or dad are expecting in many ways. They are expecting a baby who is healthy and they are expecting a wee small one who will meet milestones comparable to their peer baby friends. They are expecting some little person who will learn to say, “I love you”, and will eventually grow into adulthood with a life of their own while still keeping a loving relationship with their parents. There is endless grief when things go awry. Initial and ongoing grief is part and parcel for parents who have a child with a “significant” disability. Eventually there are ebbs and flows of this grief. Life is readjusted and some expectations fade and many more change. Some degree of acceptance comes (and goes and comes and goes). Over-riding all of the emotional and psychological aspects of parenting a child with significant disabilities is the non-stop, on-going care of this child. Remember the early days of a newborn? This little package of heart and lungs and skin and soul is yours and completely relies upon you for life. It is exhausting and exhilarating…..and although it seems endless, it is not. Soon the baby sleeps through the night, learns to walk, communicate, use the potty, socialize with other little persons and adults and moves up and away from mommies and daddies.

This is not the case for a child with significant disabilities. The care is never-ending. Parents of these tiny babies have signed on for the long stretch. I listen to and read the thoughts and worries of these parents and of the endless care they provide as they share their day to day concerns, joys and lives. Remember, “Walk in my footprints for a day. You will understand.” I haven’t and I cannot. I have been the teacher of these children and currently I spend hours and hours assuring that the future special education teachers, school psychologists, school counselors and the occasional general education teacher know how to assess, teach and support these children and adolescents and that they are prepared as best as possible to be the person in their school setting who might make a difference in these children’s’ lives. But I have not spent 24 hours with a child who needs 24 hours of my care and skills to even survive. The parents of these children and adolescents and young adults and often old adults are the experts. You struggle daily and hourly with the weary work of physical care, the night-time worries of “what if?”, “what then?” and the day to day struggle to find and keep services and support for your children. You live with secret guilt. You live with secret anger. Sometimes you are brave enough to share both. You live constantly with fear. You are the heroes. You are the wisest of men and women. Parenting a child with significant disabilities is love on overload. I listen to you and I learn. Let us all support you in every way that we can.

Monday, January 11, 2010

See Me

I picked up the phone and gave my name to the nurse/guard on duty at the front desk. I was buzzed into the locked psychiatric facility. It was a better place than "Center", down the hall and around the corner. I could keep my purse with me. I could wear a belt. I was still deeply frightened and uneasy about this place. My beautiful daughter was here, locked in with many people from all walks of life but a large number from straight off of the streets. I was terrified when we started this journey and never stopped worrying about Linea's safety. Although the nurses were always caring and respectful there were many more of "them" than of staff. I had spent my life working in the field of disabilities. I was comfortable around children and adults with the most significant disabilities. I had worked in the trenches with adolescents with severe behavior and mental health problems. I had heard all the language howled out in fury and madness. I had witnessed the aggression of human beings unable to hold back their fear and anger at the world. Yet in this place I was deeply frightened for the safety of my daughter. I had preconceived and deeply held notions of the type of people who were incarcerated (sorry, hospitalized!) with my daughter. I wanted her daddy to stay with her at night, sleeping beside her bed, keeping her safe from someone...words I couldn't say even to myself. The crazies. The ranting and raving lunatics who were years older, bigger and with much worst pasts than hers. Don't get near my baby! I couldn't say it aloud because I am educated, open-minded and very loving of the world at large. But here I was and I was completely terrified.

We were allowed to see my daughter for 30 minutes at a time and I didn't miss those times. I finally asked the nurses if we came to see her too often. I was told that the more time families spent with their loved ones the better and quicker the recovery. "Why aren't there any other families here?" I asked. They just don't come, I was told. Or there is no one. I was even more anxious about leaving her alone in this place.

After my visit I left the unit and got into the elevator. The door closed. I was standing in this small space with one other person. A very tall, large man from the unit who had "earned" a fifteen minute smoke break, alone, without the posse tagging along. Here we stood waiting for the elevator to drop us down to the first floor. I do not want to admit this but I will. My heart was pounding and I was considering stabbing a button and getting out on the next floor. And then he spoke to me. "How is your daughter doing?" he asked, in a thick Eastern European accent. (Why do you want to know? How do you know her?) "She is doing better," I said, the pounding of my heart increasing.

"It seems not so fair for the young ones here," he said. "Her, I pray for. Me, I have some trouble with the drink and come in here to try to get well." (I am so, so sorry I was judgmental. I am so sorry I was frightened of you. I am so sorry I did not look at you, at your face, into your eyes. Forgive me.) "Thank you," I said. "I hope that you are feeling better very soon." (Thank you for teaching me. Thank you for looking at me. Thank you for treating me like a fellow human being. Thank you for being a better person than me and helping me to take a step forward.) The door opened and I headed back to my university and he to the small terrace for his fifteen minutes of time alone.

Friday, January 8, 2010

A Great Good Place

Wouldn't you want to be in a community space that is full of people from every background, and from nations around the world? With people that are healthy and not so healthy, abled and disabled, with varied interests and talents and with a conglomeration of people outside of your normal safe place in the world? I suppose there are people in the world that don't want this but I do. There are a few places that meet this expectation and we happen to have one close at hand.

There is "friendly community shopping center" located in what is considered the "Eastside" of the Seattle area. This part of the region is known primarily for the wealth of its residents including one former CEO of a quite well-known software company. Nestled a few miles from Microsoft's campus is this amazing place called Crossroads. It was founded by Ron Sher, referred to as the Suburban Soul Man by Seattle Metropolitan Magazine. I wish for more such places. Crossroads sits 3 miles from the very high end shopping center that houses Neiman Marcus, Jimmy Choo, Louise Vuitton (if you don't know who these people are, good for you!), etc. etc. but in a very different neighborhood. The neighborhood has many languages, people with low or no income and multi-family housing living next door to middle class and upper middle class single family homes, all close to Crossroads. Sher, a committed environmentalist with a Ph.D. in agricultural economics of all things, was inspired by the notion of a "Great Good Place". The commitment behind Sher's work was the notion of a gathering place that welcomed "all comers from the prosperous to those with little or nothing to spend". I love this place. On any night of the week I want to stand up and cheer at the mix of people gathered in this great good place.

This is indeed a place of diversity. Yes, there are many people from a variety of cultures from around the world. There are also groups of young and older adults with developmental disabilities sitting with each other or BETTER YET with all kinds of people, playing games, laughing, talking, eating. There are great-grandmama's and papa's gathered together with friends or with family members. There are college students on their laptops tapping away or conversing with their equally focused friends. There are awkward middle-schoolers, too young to drive but finding a place on the bus route (and acceptable to their parents as a hang-out) and able to eat a meal together for less than six dollars. There are wheelchairs and walkers scattered amongst the crowd for various types of people. There is frequently a man buzzing around in his electric wheelchair, well known to the merchants and the "regulars". He is very physically and cognitively disabled and has great difficulty talking but he is completely comfortable in this community without an assistant or "aide" to follow him around. He watches the giant chess game for awhile, orders Mexican food which is prepared and brought to him in a way that he can eat it. He browses the bookstore, has an ice cream and ends up at the coffee shop.

The satellite library is always completely full, with computers available for all sizes and shapes of people. Recently I watched as a story hour unfolded with tiny toddlers gathered around. The story was in Chinese. Children of every background huddled together on the floor as the exuberant leader read in such a way that it didn't matter if you were one of the 3-year-olds that didn't speak Chinese. There is much to do. There is a second hand bookstore (oh yes!), retail shops and a mini-city hall with translators and answers to questions about public health, energy assistance and health insurance. There is funding and volunteers from Microsoft and United Way assisting with tax preparation for families in need and mostly lots and lots of fun. There is a stage with open mike nights, nights with tiny children playing violins bigger than themselves, bands and mini orchestras and nightly music from cultures around the world. The elderly put aside their walkers and lean on each other in a slow two-step. The children jump and chase and keep time with the flashing lights in their shoes. The two young adults with intellectual disabilities exchange a shy kiss as they push each other around the dance floor. Languages from around the world mingle with the smells from the food court. Indian, Thai, Greek, Mexican, Russian, Japanese, Chinese, Korean, and more. I can have tika masala, bubble tea, pho and a baklava for dessert. All prepared by people for whom this food is their own and who are making a new life in another country far from their home. Everything is recycled. If it is busy the customers clean up after themselves. We share tables. We recognize the specialness of this great good place. Where is yours?

Sunday, January 3, 2010

Karma and Impossible Things

One definition of karma is an action or deed which causes an entire cycle of cause and effect. Serendipity is good luck in making fortunate and unexpected discoveries. We have had a combination of both in the last few years and in our journey to meet our agent. My daughter and I have written a book together and are working to get it published. Before I tell you the fascinating tale of our agent, let me wax on (literary term) about writing for a bit. I know that there must be hundreds and hundreds of books that have been written but never published, laying around in drawers, on old floppy disks (remember those?) and on hard drives. But never published. Never read by an agent. Never sent to a publisher. It is hard, hard work to move a good idea or a burning need to write onto paper, day in and day out, writing, writing, writing. It is equally hard to find an agent by presenting a well-written proposal only to turn around and re-write the proposal again and again until it is ready to go out to a publisher. The majority of new authors or academic authors write in their time between (paid) work and family. I think it is alot easier to let a good idea or a somewhat completed book languish in the recesses of a dark hole somewhere than do all the hard work to get something published. The good news is that we signed with an agent October 1st in New York City. It was amazing and more than exciting. We spent a full year of work preparing all that was requested for this next step in the process of publishing a book. Now for the karma/serendipity part of the story.

We flew out to New York to meet with our agent with anticipation and a strange feeling of coming full circle. New York was a place of great hope for Linea. She first went there as a high school senior, singing with a college ensemble at an international jazz festival. While in Chicago majoring in music performance her goals were centered in New York. There were many actions in the next few years causing an entire cycle of cause and effect. She became ill and was diagnosed with bipolar disorder. She took a medical leave from school and was hospitalized. She returned to school and was hospitalized again. She fought and struggled and somehow was able to stay upright while trying to manage this new and insidious illness. Linea transferred universities and will graduate this year with a degree in English and creative writing as well a three years of credits towards a degree in music performance. After all of this, we were in New York City in the fall of 2009. As we followed the directions to our agent's office in Union Square Linea pointed to a bench in the park directly outside of the office. "I called you from there, crying", she said. "Remember?
I remember. It was her last year in Chicago. She and three friends flew to New York City. It was the week after Christmas and husband Curt and I had gone to the remote and beautiful Ucluelet on the Pacific Rim Trail on western Vancouver Island, British Columbia. It is a place as far west as you can get in North America. While in NYC Linea had her wallet stolen with all her identification, money and her credit and debit cards. She was barely well and didn't need any additional stress in her life. I was frightened for her as I stood in the pouring rain and the exact spot in order to get cell phone coverage while she cried from over 3,000 miles away. Yet she stayed steady and her friends stayed by her side as she filed a report with the NYC police and did all the trivial and complicated details involved in losing one's identify and money. Two years later we were in New York, signing a contract with an agent for a book about this journey, not twenty feet from where she had called me. Sometimes you just have to believe that there is a bigger plan for each of us. I have said to Linea so many times, "Trust the Universe." Even times when I didn't have much faith left myself but somehow I still had a tiny speck of curiousity and hope about what might come next. Sometimes I just had to believe in impossible things.
While we were in NYC we made a quick trip through Central Park. We came across the beautiful bronze sculpture of Alice in Wonderland, commissioned by George Delacorte and unveiled in 1959. Linea has always loved Alice in Wonderland. For about two months around age five she would only answer to "Alice". She knew most of the lines from the 1985 movie.

Alice laughed. "There's no use trying, "she said. "One can't believe impossible things."
"I daresay you haven't had much practice," said the Queen. "When I was your age, I always did it for half-an-hour a day. Why, sometimes I've believed as many as six impossible things before breakfast" (Through the Looking Glass, Lewis Carroll, 1865).
Karma? Serendipity? I never want to quit believing in impossible things.