Wednesday, December 16, 2009

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 ........


Carrie Wilson Link said...

Thank you for finding my blog, now I've found yours. I have a friend needing this information very much. No accidents!

mama edge said...

I too struggle with the self-care part. Thanks for the reminder today.

Nancy Campbell said...

This is wonderful advice, and something that, like you said, could work for any illness/crisis situation.

So glad I found your blog, Cinda.

erika said...

Such an excellent post. Posts like this happen when knowledge, intelligence and sophistication meets experience and understanding.

Menopausal New Mom said...

Such an important message, especially this time of year. Very helpful to anyone facing this challenge.

The Sanity Inspector said...

Good tips. Thanks to generations of rural inbreeding, bipolar disorder runs in my family. Fortunately, I married a woman from another continent, and pray that the condition skips my two small children. Whenever they are sad, or fly into a childish rage, I blanch more than a normie parent would. Hope your message spreads to those who need to hear it.

Cinda said...

Thank you all for for your comments. I hesitated to write this during the holiday season but have friends and colleagues going through this right now.

Elizabeth said...

Wonderful advice. I wish I had had it when one of my sisters suffered a breakdown and was hospitalized several years ago.

Megan said...

Hi Cinda! I have been really busy, as you might see from my blog. Thank you for checking in with me. You are a sweetie! We seem to have resolved some school issues as you will see, at least temporarily. Thanks for posting about how you found that initial diagnosis. It took us time to accept it too. No one wants to hear that their daughter has an incurable mental illness. Just heartbreaking!

pixiemama said...

A truly wonderful post.


Bethany said...

I don't have experience with this mental illness. But I found your writing and advice very helpful and wise.

Corrie Howe said...

Having just gone through my father having a heart attack, this advice is just as useful for any family member.

Funny, but sad story. My dad put a password on his computer with all the financial information. He left a hint, but it wasn't good enough for my mom or I to figure out. We guessed correctly, but we couldn't get it formatted correctly for the computer to accept it.

Fortunately, my father survived (after being unconscious for 13 days) and has since written down all his passwords and given them to me.

My husband has done the same for me...although I'm better at guessing his passwords