Monday, October 23, 2017

I am proud of the good work I am doing!

Hello there!

It's been a while since I have visited this space and my personal blog(s) and that makes me reflective. Truth be told, I love the work I am doing for NAMI (National Alliance on Mental Illness) San Diego, but sad about it's encroachment in my personal life. Work has a way of doing that, right?! Though at times challenging, it's all good!

I recently celebrated my one year anniversary working for NAMI SD in the role of Family Support Specialist Trainer within the Children, Youth and Family Liaison. We are doing good and important work, and work I am very happy to do based on our family's lived experiences of mental illness and challenging childhood behaviors. I am very pleased to be able to take my story into the community as a support service to families in crisis. We present in front of schools, parent groups, community resource workers and companies that support families needing behavioral health services within San Diego county. Never did I think I would be able to use my personal story and experiences in this way. I love my job, and most importantly, I love helping families find their way out of crisis.

The graphic above is one I created as a way to introduce myself in a "1 minute presentation" of what it means to have "Lived Experience" and a way of describing a "Family Support Partner." My presentation format has been warmly received and recognized in the San Diego mental health community. So much so that it will be used at a national conference next month: the National Federation of Families Children's Mental Health Conference. Sadly, I will not personally be presenting, but my two team members will be. I have created a graphic similar to this one with both their personal stories of Lived Experience and working as a Family Support Partner. But, personally, my story is the one that resonates most for me! 😉

Please feel free to engage with me through NAMI San Diego. You can reach me by sending me an email, or visit our website, of which I am in charge. We offer many resources for families, support groups and free education classes. If your family is struggling, supportive tools are the best way through this. You can learn how to better support your loved one, and through education and support, learn how to be the best advocate possible for your child. 


Wednesday, May 10, 2017

The importance of early detection and early intervention in mental illness

I've shared before in my spare time I like to watch Ted Talks and videos put on by the NIMH. This talk really inspired me when I watched it, so I uploaded it and am sharing it with you here. If you cannot see it for any reason, here is the link so you can watch it directly on the Ted site. I couldn't be more thrilled to learn the NIMH is focusing on early detection and intervention.

As a parent of a youth with early onset symptoms of a brain disorder, I am a big proponent of early detection of mental health issues. Early detection means the youth can get help sooner, and potentially prevent severe mental illness. In fact, I was approached by my local NAMI chapter to train and teach a class called NAMI Basics, aimed at parents of young children and teens under the age of 18 with challenging behaviors or early diagnosis of mental illness. I am proud to report that I have completed that training, and am ready to teach the very first course of NAMI Basics in San Diego in 7 years!

If you are in San Diego county, and are interested in taking the NAMI Basics class, please feel free to contact me directly at the Child, Youth & Family Liaison by visiting our website here. From that page, you can send us an email to be notified of the next class date, and be added to an interest list. We are forming interest lists for BOTH parents and providers or those who work supporting families in the mental health system.

In addition, I have helped orchestrate a community presentation taking place at NAMI SD on May 26 from 1-2 pm by Dr. Kristen Cadenhead of UCSD's CARE program. The presentation is called Early Detection, Intervention and Prevention of Psychosis. You may RSVP to attend this presentation by emailing the CYF Liaison here.

In good health,

Saturday, April 29, 2017

Insurance company, you don't frighten me

Katie Daisy

We took a big step, and severed our relationship with our previous health insurance company. Their monthly bill had finally climbed over $2400/month, basically a mortgage payment to keep a family of 4 healthy. In my opinion, it's beyond ridiculous.

We did not make this decision lightly. We had been thinking of taking this step for the past 10 years. But when a family member has a co-occurring disorder, you stay tethered to your provider (aka. nemesis), because they have some power to help keep your family member relatively healthy, and in times of crisis, they are the ones who can help you find the answers you need.

Well, sever the tether, we did. Now we are navigating a new insurance company world, new doctors, new rules to see doctors, and the challenging process of "referrals." And, the ordeal of HIPPA laws. Navigating all of this is not for the faint of heart.
Thankfully I am not as quick to anger when the person on the other end of the phone just doesn't seem to speak the same co-occurring disorder lingo as me. I admit... not many do. Seems I have somehow become some sort of "expert" at this. Guess that's what happens when you are a mom forced into action based on necessity.
Since I now work in the non-profit world, I am becoming more familiar with County provided services, and how these benefits help uninsured people who are coping with mental illness and co-occurring disorders. These services seem to be almost better than services provided by a private insurance company. Granted, we have only just begun working with the new insurance company, but within a few short weeks, I have witnessed the following:

  • Even with insurance, medicine co-pays can be multiple times the cost of what someone pays who doesn't have insurance. 
  • General practice doctors will refuse to take on a new patient, saying they don't have the education or background to provide proper services. (WTH?)
  • Public service programs seem to know so much more, or are way more worldly than the private insurance company doctors. (???)
  • Even if you buy into the "premium plan" offered by the new insurance company, it doesn't guarantee you will receive premium services. You will just pay lower co-pays and deductibles. 
I am considering taking my loved one off our family insurance plan and see if he would receive more comprehensive services by using county funded health care. I'm not going to do this right away, as we do have a big change up within our government right now, especially within the health care world. But I am going to wait and watch carefully what pans out over the next several months to see what the best option might be for our family. 

I will report what transpires. Stay tuned...

Thursday, February 16, 2017

A letter to my son

I am thinking of giving my son this letter on his 21st birthday, which is a couple months away. As ever, I am grateful for this space, where I can process my thoughts and let them simmer, while I mull things over.....

To my son, my first-born child,

When we first met at your birth nearly 21 years ago, I dreamed of a special new life; you, your dad and I, all happy and rosy together. I never imagined the kind of journey we would travel together as a family. We have come a really long way.

I had experienced several problematic health situations within my family, such as a brother with severe depression that emerged in his college years, a grandmother with OCD and hording behavior, a brother-in-law who lived with paranoid schizophrenia. But even though these situations were very large in their lives, they never touched me the way your medical and mental health challenges would.

You were born bright and beautiful, a miracle after a very challenging and precarious pregnancy where I nearly lost you at week 21. Your health at birth was an amazing blessing.

When things began to get rough in your early school years, I made the decision to quit my job and work at home so I could watch more closely the ways in which you needed help. Ever the independent and resourceful child, with a quick, bright mind, I watched as situations at school whittled away at your self-esteem, and soon escapism and protection became your daily goal. Feeling helpless to know how to navigate the systems in place that were meant to guide you successfully towards adulthood, I stood by watching my beautiful child fall apart in front of my very eyes. I felt I was powerless to change how you felt, powerless to make those who interacted with you on a daily basis understand the complex yet magical child you were.

When addiction and severe depression with suicidal ideation made its way into our lives in your 15th year, we realized your challenges were more than we knew how to navigate. You seemed to be at your lowest low, yet placement in an RTC setting, while helpful in reestablishing you to a place of health, still couldn’t help you manage the need to self-medicate. A frighteningly near-successful suicide attempt was your way of speaking out, but it left us feeling as helpless as ever. Nothing we did ever seemed to bring you out of the roller-coaster of frustration, depression, and self-loathing you seemed to wear daily. We tried our best as a family to love, support, and encourage you, which always seemed to work in the moment, but sooner or later you would always return to self-defeating behaviors. We tried our best to make you aware of how much brighter our lives were with you in it, as we stood by helplessly not knowing what we could possibly do to help you feel better.

Finally, we learned the basis of your illness was caused by a partial complex seizure disorder, where two areas of your brain suffer from microscopic seizure activity. Medication allowed you to process learning in a new way and your brain to function more normally. Therapeutic sessions helped you learn to process your actions over the past several years. Even though you still struggled with a major drug addiction, we could finally see the depression lifting, and finishing high school was finally a possibility for you.

Today is a brighter day. It has been more than a year since we brought you back into our home, and with proper support, you are dealing with your anxiety and addiction in a more healthy, controlled way. Even though I am sure some days are quite a struggle for you, as a family, we have realized the best way to support you is to have you at home with us so you can continue to mature and grow at a pace that is right for you.

21 years ago, I was a girl who thought I knew what it took to become a mom. I was not ready, nor was I equipped to handle mental illness or a co-occurring disorder. I was not able to handle the backlash of community stigma towards behaviors society deems objectionable. I was unsure how to negotiate with a child who exhibited dangerous or self-destructive behavior. I didn’t know how to stand up to an entire school district or a national insurance company to make sure my child’s health needs were met.

Today, I am a woman, I am your mother, and I have learned how to stand up and fight for your rights and needs, especially when you could not fight for yourself.

When you were born, I knew you were different. I was right. Because despite the battle you have walked through personally, you still manage to be the magical person I’ve always known you to be. Despite your medical and mental health challenges which our family has walked through together, you have taught us all how to navigate walking an uphill battle with grace and fortitude, sometimes with great effort, and always with strength.

For you, I am so grateful.

With love,

Your mom.