Initial Diagnosis

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 ........

The Season: Time for Love

We are entering that time of year when some of us have a little more room in our hearts and perhaps a little more gratitude for the small things. Daughter Linea, she of the bipolar gremlins, is wrestling with a push-back from this challenge in her life. She is fighting hard against all the symptoms insidiously trying to sneak back into her life while finishing winter quarter of her last year in college. She is working on writing a "senior synthesis", a paper that breaks her heart while she looks back over her last years of college. She is studying for finals, completing all the paperwork for graduation, etc. etc. I drove her to the medical center for a blood draw today so that she didn't have to hassle with either the bus or parking as the area around the center is under massive construction. She was exhausted after a night of terrorizing nightmares and certainly not thrilled about the blood tests that go along with the medications she takes. I drove her back to her apartment and headed to campus for my own set of responsibilities while feeling worried about her and wanting to use my magic mother skills and make everything okay. As I drove her home she pointed out the bundled, bag-laden, elderly homeless guy on the street, a regular in her neighborhood. As I dropped her off I again offered to take her out for coffee or breakfast but she planned to have a bowl of cereal and get ready for her day. But she had no milk. She walked down to her local in-and-out to buy some milk and there was her homeless neighborhood man digging through his pack, trying to find a few pennies. She bought her milk...and some protein bars and water for the old man living on the streets, telling him to save his coins. A large percent of our community members who are homeless are mentally ill. We know how lucky we are to have the resources for health care and that we are able to treat Linea's health condition. Linea was hospitalized with many, many people that were released from the hospital to the streets. She was often overwhelmed by the inequity in care and support as she faced this up close and personal. Today she reminded me that even in our own lives, touched with worry and illness, there are those who manage with much, much less. In this season let's give to someone on the street, someone perhaps living with untreated mental illness. Something as simple as a power bar and a bottle of water, perhaps a hot meal,or time spent volunteering for an afternoon in a shelter. My daughter has taught me not to turn away, not to ignore a person living on the streets. I look, I speak, and acknowledge although I have to admit that it has been easier in the past to ignore a fellow human being as I rushed through my life. It is the season to notice, to give, to love.

Letting Go Yoga Style

I have been practicing yoga on a somewhat regular basis, even after teaching class until 7:00 p.m. Good for me, finally! I am so tired after working/teaching/writing/advising/talking/ administrating/ all day that I can easily put off getting into my car, driving to the studio, changing clothes and doing the work that is required of me to be in class. But every time I make the effort I leave class feeling SO much better. (I know this is a luxury and one that would be near impossible if I still had small children at home.) I thought I would share something that we did the other night that really struck me as more than just "yoga" but rather a life lesson. Yoga and the meditation involved provides lots of ah-hah moments anyway but this was particularly profound, at least to me. I hope I can properly explain what we did. Starting from a child's pose or balasana (legs tucked under and pointing behind, head forward onto the floor) we then placed a blanket roll between our abdomen and thighs. The leader told us that it would feel "somewhat" uncomfortable, perhaps even slightly painful. This would occur as our abdominal organs were moved into a different space, forcing a release of toxins. Here is the best part! IF we could simply notice the "uncomfortable-ness" but not resist, it would soon subside and we would begin to relax and feel centered. My body was initially very tense and, as our instructor noted, afraid it would be hurt so it was in "protection mode" and staying on high alert. It was so true and quite amazing that as I relaxed, and noticed but didn't fight against the stress, it felt so good. An ANALOGY for life I think. We resist things that we automatically think will hurt us, we tense our bodies and our minds. We can't quite "let go" and trust. The more deliberately we try to release and relax the harder it is to do so but if we just notice our feelings and sit with it, slowly we begin to let go and the pain is released. We feel easier and more centered. This is very hard to do with life but likely, as with yoga, easier with practice.

Happy Birthday, Linea!

It is time to write about Linea! She was born on Thanksgiving Day, finally, after making us wait through three days of snowstorms, walking miles through the hospital corridors and waiting, and waiting some more for her entrance into the world. In a family of blonde babies, she was a head of dark hair and born ready to dance with long, long legs and music in her soul and on her lips. Her seven and 1/2 year old big sister, Jordan, held Linea moments after her birth and declared her partnershp in mothering this baby. Linea became a headstrong two-year old and one that we suspected might cause us to fear the teen-age years. Not so. Yes, she was determined and strongly goal-oriented, but immensely kind and loving to her family and to the world. She was a thinker, putting pieces together like a game of Uno, like a Brahms concerto, like the workings of the brain. She is still all this and more. Just look at this beautiful picture she sent to me while attending college in Chicago. This girl has taken us all on a journey with her, an unexpected journey, yet one of immense bravery and with such honesty that our lives have been enriched beyond anything we could have possibly considered. Read her blog, http://www.lineajohnson.blogspot.com/ and celebrate another year with our precious daughter. I can't wait to travel forward with you, Linea, and share all that life has to offer! Love, Mom

Sometimes we just need a little comfort....

I want my binky. I want TWO binkies. I want all my binkies and I want them right now. Give 'em to me!! We have all been there. Too many things going on in our lives and not enough of them on the positive side. Too much anxiety, too many bills to pay, too many sick kids or too much homework. We need some comfort. The vast majority of us can and do provide comfort to everyone else in our lives. We often provide more than is asked of us and sometimes comfort that is not necessary or even wanted. Why can't we do that for ourselves? Eighteen-month old babies know how to get what they need. As well we mostly provide for them and try to comfort them the best that we can. Why not ourselves? I am going to yoga this week and more than once. I am opening the expensive wine and enjoying a glassful by the fire with the dear Husband. I am getting up from my darn-hard writing project at least every 40 minutes and walking outside, even if it is pouring. I look forward to spending 3 days with family over the holiday, not thinking about or doing anything that is work-related. You, too, find your binkies! A blessed and peaceful week to you!

Solemn

I would say that overall my posts are fairly upbeat and my thoughts as well. This is not the case today. Be prepared for a sad tale.... but there is a message within this tragedy. Have you ever imagined that your child could be hospitalized and that you would not have have input into her care? If your "child" is 18 years old this may very well be the case. There are so many things that can go wrong when someone is hospitalized and it seems much more likely in the mental health arena. I have written in previous posts about my friend whose daughter is currently hospitalized for a severe mental health condition. She is in "no-(wo)man's land". She is not yet out of her teens but considered an "adult" in the legal world. She is too ill to give consent for her care, and now is spending her time in a horrifying limbo of health care hell. She has been in three facilities and is now at a state mental hospital. She is too ill to give consent for the initial recommended treatment and her parents are prohibited to do so since she is no longer 17 or younger.

How did this happen? This high school girl was struggling with a tentatively diagnosed illness but suddenly things took a turn for the worse as she spiraled into a psychosis and was hospitalized. She was unable to sign the paperwork allowing her parents into the system of her care. She was assigned a guardian ad litem. Doctors could not share information with her parents without breaking the HIPAA laws. The parents are seeking guardianship but this is taking too much time. The parents (a teacher and medical doctor) are seeking custody of their daughter; custody so they can speak with the doctors, make decisions and move thngs along as we would with any health condition. Meanwhile they wait in agony.

Their daughter's mind betrays her. She is lost and unable to find her way back to any semblance of normalcy. Her parents weep. No one knew that this insidious illness was coming as quickly as it did. It moved too fast to complete all the legal requirements necessary for the parents to make decisions for their daughter's care. It moved to fast for them to recognize that they needed to have an advanced directive in place. If these two highly educated parents cannot make things happen, what about parents that are unaware of this possibility? Laws were passed back in 1967 by then California Governor Ronald Regan, setting a national precedent of required judicial hearings for extended involuntary commitment and the prohibition of forced medication, among other mandates. I get this. We have moved greatly and thankfully from forced commitment and treatment but where-oh-where is common sense humanity?

There is no answer today for this horrible situation. The parents are struggling to keep themselves from falling apart while doing what they must to support their child. I urge parents to consider having an advance directive for health care in place by the time a child turns 18. The consequences can be devasting for everyone involved if this is not in place. Yes, it may be unlikely that your child will have a major psychotic break at the end of their teenage years but this time period is when these insidious mental health illnesses show up and sometimes quickly. As well, consider this for every member of your family. Linea and I heard Kay Redfield Jamison recently speaking about her new book, Nothing was the Same, and author of, The Unquiet Mind. She is a professor in the psychiatric department and co-director of the mood clinic at John Hopkins and a leader in the research and treatment of mental health conditions. She has bipolar disorder and spoke of her own advance directive for care. As part of my professional responsibility I will include this information in my classes and assure that our future school psychologists, school counselors and teachers are aware that student become independent from their parents at age 18.

I spoke with my friend this morning and she not only again gave me permission but wanted me to share her story. She is not ashamed. She is a terrified mother. Take care, good friend. Let us all send prayers and good wishes to her family. My heart breaks for her and her family.

(Solemn and Triumphant, Painting by Jordan Swain )

http://www.jordanswain.com/)

Where's Sister?

It is time to write about sister Jordan! I wanted to give the "Dad-post" the spotlight for a few days before bumping him down for the "Sister-post". While waiting to post this over the last few days I noted that a number of blogs were posing the question of the impact on siblings of kids with disabilities. I guess we were all thinking along the same line. Hopefully Jordan will comment on this and let us know what SHE thinks about Mom's comments! She is invited to guest blog!

Jordan is Linea's big sister, seven years, five months and thirteen days older than her and about five inches shorter. Jordan has always been a big sister to Linea as well as practicing her mothering skills on her from the time Linea was born. Jordan led Linea through her childhood with care and love and her own unique brand of imagination. Which, as a budding artist, was considerable (check out her art at http://www.jordanswain.com/). Jordan was the chief instigator and designer of the Phantom of the Opera birthday party when Linea turned nine. The party was complete with a Phantom cake that Jordan made, decorations, music and all the materials (under Jordan's directorship) for each child to make a Phantom mask. The girls have a remarkably loving relationship. Linea loved her sister so much that she and her best friend, Kim, interviewed one of Jordan's first dates. In trench coats and writing on their clipboards, the two girls quizzed the poor kid on everything from his favorite food, football team, and pets to when and how he would bring Jordan home. Jordan and Linea hardly ever had arguments or competitions or any hints of jealousy between them. The only time there was any real friction was when Jordan was in the last months of her high school days and preparing to go off to college. Linea wanted to go with Jordan everywhere she went. She knew Jordan's time at home was short. Jordan was trying her hardest to prepare to fly away from the nest and Linea was trying her hardest to keep her home.

They have remained incredibly close and as a mom it is so heartwarming to see that they are best friends and will be there for each other no matter what. So how did Jordan react to Linea's illness? These two girls have very different temperaments as anyone who knows both of them can attest (understatement?). Jordan said at one point in the beginning of all of this, "I don't understand why Linea is so sad. I just get mad!" When Linea was finally hospitalized Jordan was there, continuing to fight for her sister. I had to remove Jordan from the psych unit when she wanted to take on the nurse that wouldn't let Linea leave for a walk outside. She finally left with me pulling her arm, but proclaiming that the "nurse was a b*%$h." Once out through the locked doors and into the hallway of the hospital Jordan burst into tears because she was so afraid for her baby sister. Jordan is a tough, beautiful and feisty woman but barely below the surface she is incredibly sensitive and vulnerable (just don't tell her that!). One of her strongest traits is loyalty. I can think of nothing that would fray her loyalty to her sister. Jordan's love for her sister is kinda like a mom's. I don't see any jealousy or resentment of any of the support or care that Linea receives as she works her way through her diagnosis and treatment. I only see great protectiveness and love. Jordan never shies away from the diagnosis, the treatment or the acceptance of her sister. She also has so much optimism and belief in her future that even in dark times she buoys us all up and forward. Jordan, you are our hero.