Children's Behavioral Health Update

It's high time I wrote something as there is much information to share. The trouble is I've been impacted by my child's struggle and have been feeling burned out. Not that I'm not accomplishing things. I've asked for an IEP meeting before the next semester starts in just a matter of days and of course that takes energy. I've been coping with seasonal affective depression. My child did not go to school today, but I didn't let that affect my life.

The wonderful thing is I know I'm not alone. Friday morning I was at the Children's Mental Health Workgroup and two of us in the room had children that were not in school for mental health related school refusal. (Isn't all school refusal mental health related?) Today I drove to Mount Vernon to meet with Statewide Family Network meeting, sponsored by HCA, where 3 of us in the room had children at home with school refusal. (IMHO Yes.)

I got home at 4:50. At 5:11 I realized today is the last day to register to vote (or update your information) to participate in the next election. My school attendance scofflaw just turned 18 on Wednesday. We didn't make it to the DOL to get her first ID (neither of my kids have their licenses). So I don't know if she's going to be ready to vote on the controversial Seattle School Levy coming up in February.

The only reason I remembered the registration deadline is today was I got an email that House Bill 1074 is having it's public hearing tomorrow. I've been following this bill because it pertains to raising the age for tobacco and vapor products to 21. My newly minted, vape-loving adult is unconcerned if it passes because she is certain she can buy everything she now is addicted to on-line. (Yes. She got hooked on nicotine by vaping while still a high school student so I'm certainly in favor of this passing and testified so last year.) If you care to send your testimony in support of this bill, you can do so now https://app.leg.wa.gov/pbc/bill//1074. The public hearing is Tuesday, January 15 at 1:30. If anyone plans to attend, please let us know so we can cheer you on.

Unfortunately I didn't remember to mention either the registration deadline or the bill hearing earlier at the Statewide Family Network meeting. Jerri Clark was there to present her MOMI (Mothers of Severely Mentally Ill) Legislative Agenda. She shared a helpful advocate packet and a link to a PBS news story from last week featuring her story: https://www.facebook.com/MOMI-Mothers-of-the-Mentally-Ill-287852191968017/.

I reported about the Adolescent Behavioral Healthcare Access Bill. At least that's what I'm proposing we call it. I'm sick of people talking about PIT. IMHO, PIT stinks and I want to have our new legislation to leave it behind us! I also shared school-based social emotional behavioral health recommendations that are solid and much needed -- especially the recommendations to expand school-based mental health and fully funding school counselors that spend their time delivering services to students.

We also heard reports about key take aways learned at the National Family Conference in Texas earlier this year. Copies of the presentations today are available from Washington State Community Connectors (WSCC). 

Today we spoke as parents and advocates about building a shared vision for family behavioral healthcare delivery in our state. The State Children's Behavioral Health Summit this spring is an opportunity for voices of lived experience to join together to share a vision for true family behavioral health care. Each of us brings an experience of what didn't work and what did. We have the realities of what is known to work, what we don't yet understand, and how much we are willing to invest in our children and families. We need all of the best ideas, collaborative intention, and problem solving abilities to pivot our broken system to one of care, but I believe we can!

My legislative priorities for 2019 are:
1. Pass the Adolescent Behavioral Healthcare Access Bill
2. Fully fund special education with a committment to hold a family-centered stakeholder study aimed at overhauling an antiquated and inadequate system that is breaking federal law and does not serve the mental health needs of its students.
3. Ensure that the FYSPRT system has continued support to solidify its integrity during our transition to the Health Care Authority system. We must ensure that WISe continues to be robustly funded so that family centered, intensive in-home services are provided to all famillies in need -- not just those with Medicaid.
4. Meaningful adoption of funding and policy recommendations from MOMI and a clear path to future behavioral healthcare reforms that cannot be accomplished this year.

What do you want to see happen this session?

P.S. As I write this, my daughter is finishing up yesterday's chores. She still has her list of today's to accomplish before she goes to bed tonight. Let's hope she remembers to take her medication tonight so she can get up in the morning for school. Each day is a new beginning. A new chance to make positive changes for the better. I hold on to a vision of what children are capable of, keep the faith to continue to believe despite the mistakes and setbacks, and nurture the stamina to stay committed to keeping her safe as I am able until she finds her way to independence and knowing when it is time to draw the line and take care of myself. It is the way of a parent of a struggling child. Namaste.

Shocking Journey of Parenting a Child with Behavioral Health Challenges

Please watch this video and imagine this was your grandchild, sister or best friend.

I know this mom. She lives right here in King County WA. Searching for help, finding there is little we have to offer. She has tried Childrens Hospital, Ryther, Wrap Around Intensive Services, special education, Children's Crisis Response Services, the police, even reaching out to me because I'm public about my journey with my children.

Her journey is not exceptional, but unfortunately, it is the norm. Her friends don't rally with meals and respite and spa treatment surprises. Yet she persists to share her story to try to help others that suffer the same tragedy.

This child didn't do anything to deserve autism, just like a child doesn't deserve lukemia or to have a parent die. His 11 year old sister is impacted as much as everyone who opens their hearts to this family. Who is standing by her side? Who is supporting her after a night of fear huddling with her mother in a locked rooom waiting for the police to come.

Sadly, few will open their hearts, it is just too painful and frightening to bear. We must change how we help families like this one. We rally to get a pet raccoon taken out of a cage in a parking lot and we are appalled by a puppy dying in an overhead bin, but we are silent in the face of this despair and human suffering this child faces EVERY DAY.

On Friday I sat in a meeting where people told of their struggles to find help for their famliies. One child was served a bench warrant while in the psychiatric hospital for failure to appear for court (was put in jail for this), one 23 year old spent 13 MONTHS in solitary confinement in 2016-2017, another 18 year old was discharged from a psychiatric hospital 4 hours from home while exhibiting pychotic symptoms and not provided any way to get home.

These stories are just the tip of the iceberg. Seems like I hear a new one. Every. Single. Day. (Thank you Facebook.)

We have some promising solutions that aren't been implemented as they were designed. Our own well-intentioned County employees think that we have a cutting edge wrap around intensive program -- that has changed very little since it began 30 years ago. We can start by holding our local governments accountable for delivering what is already part of the law. I'm in the fight on this daily. Will you join me?

I urge you to join this Facebook Group [https://www.facebook.com/groups/353084468424745/] if you'd like to be part creating a compassionate community that is working to build a community that responds to families in crisis with caring and love.

Why nobody shares about family mental health issues: TMI

Alternatively titled: Timing is Everything.

Today is #NAMIWalks and my virtual team has thus far raised about $350. During my virtual walk today I got a message that a close family member had called 911. Hmmm, I thought. That could be anything. My anxiety meds kept my heart-rate low and my thoughts from racing. My friend Felicia had arrived early to help me around the house a bit so I focused on that. An hour later I received a message that another close family member had done self-harm behavior to themselves with their pain medication. The paramedics could not tell the close family member who called 911 where they were taking the suicidal family member because of HIPAA.

This is why we need organizations like NAMI. This year NAMI helped pass legislation that will give more leeway to communicate with family members in cases such as this one (SHB 1477). I’m proud to be a member of their public policy committee that lobbied for this change. I lived practically next door to NAMI for 30 years and never stepped foot in the door until I went to talk to them last year as part of my personal reinvention. Yep, it’s been only a year, but I’ve learned so much and participated in some cool projects: Mental Health Awareness Month, King County Family and Youth Council, NAMI Washington Public Policy Children’s Mental Health Lead, NAMI Walks Virtual Team Captain, and learning to navigate Olympia with a bill that has a very strong possibility of passing next year and bringing decision making regarding at risk minor children back into the hands of their parents!

The great thing about doing this work is when a close family member self-harms to the degree that they are taken to the hospital, I know there are people in my life who get it. We can use social media to get support if we break an ankle or our kid gets cancer, but how does one talk about how the severe self-harm of a close family member affects one while being respectful of the privacy of the vulnerable person? If I don’t talk about then the friends of my close family members who experienced this trauma today won’t get support. My hope is that my close family members will get the help they need. I hope that insurance will cover the necessary treatment for the suicidal family member. And I hope my extended family will be able to talk about this with each other and support one another.

Today I found three items that could have warned me that another attempt was imminent. But even if had I found those items earlier, I am not certain there would have been anything I could have done to prevent what happened this morning, during the NAMI Walk.

NAMI is part of the solution to our state’s woeful mental health services. I hope you will consider giving to my virtual team here [link]. No number of suicide awareness posts protects close family members from the trauma of having a close family member attempt suicide. Processing it alone isn’t my hope for my close family member who had to make that call. I hope the next time something like this happens to a close family member of yours, you will consider sharing it as openly as I have here. 

Namaste.

Psychitzo, psychitso, skitso, schizophrenia-------

Today I had coffee over in Redmond with Lisa. I met her when I spoke to the NAMI Eastside public policy committee about SB 5706. Lisa has been on the same lonely journey as all of us. I know she'll be sharing her story with all of us on Support SB 5706 soon.

She is supporting our bill because she's been there. Her daughter is now an adult and still struggles. Lisa said something profound that is relevant to the long term impact of our work:

"Now that our daughter is in her 20s, mental health is asking where the family is. We say, we have been here all along, but you kept pushing us away ever since this all began almost 10 years ago. "

Our state mental health system has an absurd logic of not letting parents of 13 year olds make medically necessary decisions for their minor children, but coming to the parents of a young adult with mental illness who is unable to take care of herself.

This inability to supportively launch our children who struggle starts at age 13 when the state starts sending the message to children that they are on their own. It continues in jailing our mentally ill instead of treating them and killing our sons and daughters who suffer from psychotic episodes we seem to be unable to prevent.

I'm not speaking in hyperbole about death. The following is from an email I received from NAMI Seattle yesterday:

One of our Youth Mental Health Awareness Month Committee members... "experienced a terrible tragedy. Her brother Alex, who was living with schizophrenia, was killed by police last night [Tuesday] when their family called for assistance in getting him to the hospital. He was unable to be revived after being tased."

My heart aches for the families of children, young and old, who struggle to live with debilitating mental illnesses. I am filled with gratitude to connect with others who share my journey, even if it means the heart breaking condolence shared with a grieving sister because I know if I can see her, she can see me.

Namaste.

Rebuilding Community One Connection at a Time

Today I made an amazing first-time connection with a woman I met because of my work to help our children and families. Annie and I overlapped at Northfield Mt. Hermon. She knows at least 3 people in this community of ours who I know through 3 different past lives. She knows Mary who I met at Washington Mutual. Jerry, I met via my son's stay at Mountain Springs Prepreatory Academy. Laura was hired while I was on the board at Pride Foundation. I know several of you will see a Changes Parent Support Group theme as well.

Annie's daughter and mine sound like they have much in common tempermentally. Her daughter is about to be 18, mine 16. My son will turn18 just 3 days after her daughter does. I moved to Seattle in 1981. She came straight from high school in 79. I did my first yoga practice in the Northfield ballet studio in 1975 and still have a living practice. Annie has a yoga studio relatively nearby -- considering our interconnectedness, it's quite amazing our paths have never crossed before.

I feel blessed to have connected to all of you and am looking forward to building a movement together with each of you. I can't express my appreciation for how quickly you stepped up to back my voice in Olympia.

My work on this issue is extremely close to my heart. My daughter is still in treatment and I am activelly working to bring her safely home. Eli has not lived at home for 3 years. I have a 190 page evaluation that I will be submitting with my enrollment application for attending Seattle Public Schools in the fall. I'm going to push to see if I can get my daughter a Free and Appropriate Public Education.

Today I set up a meeting with a school I learned about through NAMI Eastside's (Lisa) incredibly fantastic children's conference earlier this month. [Aside: it's amazing how "the work" that I'm doing is so interconnected with the actual work of getting my child better ... or at least able to function in society. More on that later.] I'm cautiously hopeful there may be a path opening. Hold us in your thoughts please.

If you have read this far, I really appreciate it. Please let me know who's out there with a "like" or a comment. Each of us has walked the path alone. Thank you for joining in community. Working together we WILL get the billed passed in 2018!

(I also plan a happy hour at my home soon. There's plenty of work to be done before next year. Watch for a Doodle scheduling poll soon.)

Namaste.

An Adoption Story