It’s taken me a few weeks to write a post about attending this year’s HealtheVoices. This is the fourth time Janssen has hosted this event and I am blessed to have been invited to attend all four times. Usually I come home full of enthusiasm and joy at spending such an amazing weekend with so many dedicated advocates and inspirational people. This year was an emotional roller coaster for me. But before I tell you about that, let me tell you about some of the people I met and things I learned.
I. FEEL. DEFEATED.
Today my son was baker acted for the third time. He is 8 years old. 8. I drove to the hospital in silence as a fear I had since forgotten began to enter my heart. This day is a day I will never forget. This one is different. Softly I can hear behind me as the doctor whispers into a security guards ear “call a code gray”. Then loudly I hear “Code Gray!” It seemed to sharply pierce me in the stomach as I heard those words a second time. What exactly is a code gray? It’s turning around to see a swarm of doctors, nurses,
Police officers and security guards RUNNING in your direction. It’s a nurse holding you and physically pulling you into another room when the only place you want to be in that moment is in your child’s shoes instead of him. It’s hearing your baby scream in terror as he is strapped down to the bed. It’s knowing that’s what is best. It’s knowing there is a serious problem and facing reality that there is nothing you can do to fix it. Code Gray was my life today. My son is my hero. He battles a monster that consumes him from the inside out every single day and most days he is ok. Most days he wins. Today, though, the monster won. And I feel defeated. Why? Because it’s my monster to fight for him! And I lost! I lost! Phew, deep breath. It’s ok. He just needs medication changes, right? He will be ok in a few days, right? What about a few years? What about his career? Will be find love? Will he be successful? Will he go to college? Today, the monster won. We will accept the loss.
Because tomorrow, we embark on the journey to understand who and what this monster is… and I promise you, I will defeat it. Because my son is worth it. Your children are all worth it. Do not give up. They need us. The monster will never die but with our guidance and love and support, it will only show it’s shadow every now and again. So, on days like this, when you have just gotten home after having a 10 hour panic attack and admitting your only baby to a psychiatric hospital and driving home alone.. get up and be ready to fight. Warrior boots on.
I know, I’ve been quiet for a few months. Frankly, I’ve started and stopped writing posts at least a dozen times over the past three or four months, and every time I get disgusted by our current political climate and stop. I feel completely helpless. We have a President who wants to reduce the health care our children need to survive. We have an Education secretary that is eliminating guidelines just so she can say she’s reducing paperwork. Congress actually made it easier for Tim to go out and purchase a handgun next time he’s suicidal. I keep hoping I’ll wake up and this will have all been an incredibly bad dream.
I decided to take a look at the guidance documents Betsy DeVos has rescinded by describing them as out of date. Granted, many of these documents are decades old. But many of them have no newer versions. These documents help parents and school administrators understand IDEA law. Here are some examples of what I mean:
These are just the documents without newer versions that I was able to preserve. Some I found when the Department of Education listed them as “no link available”. There are others that I cannot find that are important and have no newer version:
If I still had children with disabilities in school, I would be consulting with the ACLU on whether removal of documents with no newer versions constitutes a violation of my and my child’s rights under IDEA law. I am going to reach out to Wrightslaw to see what their assessment of the impact of Ms. DeVos’ actions will be. I’ll let you know what I discover. Don’t forget – DeVos is the person who said the question of whether students with disabilities should be educated should be left up to the states.
In the meantime, I will set up a files section on the website to house the documents I was able to preserve.
***Update*** Here are the documents: https://themindstorm.net/purged-department-of-education-documents/
In July of 1980 I was thirteen years old. I spend the previous school year being picked on for being chubby and having braces. The summer between seventh and eighth grade I got my braces off and went on a diet. I lost 15 pounds.
My sophomore year of high school I was enrolled in a class given by a former modeling agent to learn how to put on makeup, walk like a lady, and dress, since I wore a uniform in high school. I was 5 foot 7 and I weighed 137 pounds. The instructor told me I needed to lose 10. By my senior year I had grown an inch and lost seven pounds. That’s me, up there, back then.
During my freshman year of college I gained the dreaded freshman 15. I also gained a verbally abusive boyfriend who called me a fat cow. The summer between for freshman and sophomore years I lost 20 pounds. My sophomore year of college he proposed, and then found new reasons to belittle me. When I finally broke up with him the beginning of my junior year, I ate my grief and relief and put 5 pounds back on.
Later that same year I was raped. I spent three months hiding in my room, avoiding class, avoiding public. I stuffed my pain and shame down with food. I put on another 30 pounds.
My senior year I met the love of my life. I dieted and exercised off 20 pounds. A year later, we got married and I got pregnant. I used the pregnancy as an excuse to eat. I put on 80 pounds.
Tim, our second child, was first diagnosed at age 4. The next 16 years were living through a nightmare of rages, violence, suicide attempts, medications, hospitalizations, and residential treatment. I used food to help control my depression and PTSD. I gained 5 pounds a year.
Between 1991 and 2016 I have lost and gained nearly 300 pounds on Jenny Craig, Weight Watchers, Optifast, Atkins, The Mediterranean Diet, The 21 Day Fix, and the Paleo Diet.
Years of therapy and treatment have helped me deal with my depression. Tim is stable and thriving. It’s time I did something for me. So today, I’m having gastric bypass surgery. I need to lose half my body weight. This is the tool to help me do just that. This is my self-care.
Wish me luck. Please.
On April 20, 2017, it was announced that an amendment to the American Health Care Act (AHCA) was being proposed. The amendment was authored by Congressman Tom MacArthur (R-NJ). On April 25, 2017, the full language of the amendment was released. You can read it here.
It’s not great. It gives the states the ability to strip away all the gains in mental health parity that were guaranteed under the Affordable Care Act (ACA). Here’s two reasons why you need to call your congressperson now and tell them that the MacArthur Amendment must be stopped:
State Waivers
The new language allows states to apply for waivers of the Essential Health Benefits clause of ACA, in order to reduce premium costs. Before the ACA, mental healthcare was NOT required to be covered by any insurance policy, including state Medicaid. The MacArthur Amendment would allow states again to remove mental healthcare from policies to save money. By the way – it could remove women’s health benefits too, like prenatal and other OB care.
Health Status Underwriting Waivers
This language would allow states to take high risk people – read, folks with pre-existing conditions – and put them into a high risk pool where premiums for anyone with a pre-existing condition could skyrocket. This waiver would remove the clause in ACA that prohibits insurance companies from charging folks with pre-existing conditions more. So, yet again, a chronic medical condition could bankrupt you.
Call your congressperson – click here to find out his or her number. Be polite, but tell them – My child has a serious mental illness that requires lifetime treatment. The MacArthur amendment would allow my state to take away my child’s mental healthcare, or increase premiums for this pre-existing condition to the point where we could not afford his or her treatment. Please vote NO on the American Health Care Act and the MacArthur Amendment. Calling works better than letters.
“Frustration” by Jason Bolonski is licensed under CC BY 2.0
I went to the third annual HealthEVoices Online Advocacy conference this past weekend. I learned a lot that I want to share with you over the coming weeks. But probably the most important thing I learned is that I don’t have to be everything to everyone, all of the time. I love the advocacy work I do. I love helping parents just starting down this horrific road not have to navigate the same disasters that we had to navigate. I love getting big companies to stop doing things that perpetuate stigma.
I want to do more of those things. But I get mired down in having to “friend” everyone on Facebook, answer every email and messenger request, and respond to every tweet. And, frankly, being “on” all of the time is really wearing. I end up burnt out and not doing the things I really love, like working directly with parents and writing my blog and other articles.
So, I’m going to stop.
I’m not going to accept friend requests on Facebook from advocates I haven’t met. I’m going to let some comments and trolls go by on Twitter.
And them I’m going to do.
I’m going to write more. I’m going to finish that goddamned book. I’m going to attend more IEP meetings with frightened and confused parents.
I hope you’re ok with that.
I hope you’ll do the same. Tell me how you will change up what you do to care for yourself better.
Disclaimer: Janssen Global Services paid for my travel expenses to the conference. All thoughts and opinions expressed are my own.
“Relax” by Scott Leslie is licensed under CC BY 2.0
I have been trying to explain to friends, family, and others why I, a middle-aged, middle-class white woman, am afraid of what the next four years holds now that Donald Trump is our President Elect. I keep reading comments like, “we will have to wait and see what happens,” or “we will all be okay.” Sorry – screw that. I will not sit back and just wait and see what happens. Because of Donald Trump, things are already happening that are dangerous. Things have already been proposed that will impact the quality of life and potentially harm the lives of those that I love.
My fear has nothing to do with his crass language. I’m not afraid for myself. I’m afraid for my children, Tim and The Girl in particular.
After our calls and emails to Knott’s Berry Farm and Hollow Studios, the online petition, and posts, articles, and letters from the Orange County chapter of NAMI, Pete Earley, Ron Thomas, and Los Angeles Times writer Steve Lopez, Cedar Fair Entertainment, the parent company of Knott’s Berry Farm, California’s Great America, and Canada’s Wonderland Park have closed the FearVR attraction in all three parks!
Ron Thomas, father of Kelly Thomas, shared this email he received from Knott’s Berry Farm last night:
Knott’s Berry Farm is proud of its popular annual Southern California Halloween event, Knott’s Scary Farm. For more than 40 years we have delivered unique and immersive haunted experiences to our fans and loyal guests. Our evening attractions are designed to be edgy, and are aimed at an adult-only audience. Over the past week we have heard from a number of people expressing their concern that one of our temporary, Halloween attractions – FearVR – is hurtful to those who suffer from mental illnesses . Contrary to some traditional and social media accounts, the attraction’s story and presentation were never intended to portray mental illness. As it is impossible to address both concerns and misconceptions in the Halloween time frame, at this time we have decided to close the attraction”.
Best Regards,
Public Relations | Marketing
8039 Beach Boulevard, Buena Park CA 90620
Office (714) 220.5130 | Fax (714) 220.5124
Steve Lopez of the LA Times is the reporter that wrote the book that became the movie The Soloist, about Nathanial Ayers, the amazing classical violinist he met on the streets of Los Angeles after Ayers developed schizophrenia. Let’s not forget what Steve wrote in his article about the ride (linked above):
But another line in the email made me wonder if Knott’s was taking blame or pointing a finger:
I received a response from both Knott’s Berry Farm and the maker of the virtual reality game they are showcasing this Halloween.
Knott’s Berry Farm is an amusement park in Orange County, California. I’ve been there several times, as a child and as an adult with my kids, including Tim. Every October they turn the park into Knott’s Scary Farm, decked out in all the finest in Halloween regalia.
This year, they announced a new virtual reality experience they have titled FearVR: 5150. From their own website, here’s the description:
Enter the Meadowbrook Institute and witness the abnormal case of a terrifyingly unusual patient named Katie…Disturbingly vivid sights and sounds invade all of your senses. Encounter the darkness that has taken over the medical staff during your fully immersive hospital stay.
