Sarah Fader: Parenting a Special Needs Child

Guest Post by Sarah Fader

Being the parent of a child with special needs is inherently difficult. But when it comes to a child who has mental health problems it is another echelon of challenges. I never imagined that my son would have special needs. But I guess nobody knows that they will have a child with special needs when they’re pregnant. There are exceptions to this rule. People find out that their child has downs syndrome or spina bifida or an obvious disability that can be detected in pregnancy. But mental health issues, that’s a different story. There are exceptions to this rule. People find out that their child has down syndrome or spina bifida or a very obvious disability that can be detected in pregnancy. But mental health issues, that’s a different story.

My psychiatrist told me there was a 6% chance that my son would develop depression; that was my first pregnancy and I had no idea what I was in for. I knew that my family had a genetic history of panic disorder, depression, OCD, and anxiety. So there was a good chance that one of my kids would develop one of these issues or something else that was mental health related.

But I was naïvely optimistic and thought it would not happen to my kids. When I first had Ari I was a new mom and figuring things out. The last thing on my mind was whether he would have mental illness. I was concerned with developmental milestones and the chance of him potentially having autism because that is what is stressed when you have a child. Even in the hospital they don’t talk about mental illness they talk about shaken baby syndrome. They talk about caring for your infant and making sure that you satiate that baby’s needs. Doctors warn you about postpartum depression and the baby blues but they don’t tell you about mental illness for your child.

So when my nine-year-old son started showing signs of OCD I was nervous. When my baby boy who wasn’t a baby anymore showed me that he needed help and was oppositional and had irritability and rage, I didn’t know what to do. There is an extended timeline in which things happened and I felt like they were out of my control.

What was out-of-control wasn’t me. The thing that I could not control was what was happening to my son. I was doing the best that I could I am doing the best that I can trying to find the doctors to help my kid. Trying to fight with the flawed mental health care system and find out what it is that he needs and how I can provide that to him. But I am one person and asking my friends for help is getting exhausting for me and for them. I don’t want to be a burden on others. I don’t want to ask for something that people can’t give. All I want is for my son to find peace. I want him to live a life where he feels like he can be himself.

Speaking out about what I’ve been dealing with has been difficult because I faced much judgment from people online when I share my struggles. As the founder of a mental health nonprofit organization it is bizarre to me that people would criticize me talking about mental health issues even as it relates to my family and more specifically my child. Would people be angry if I was discussing my child diabetes? Would people be upset if I was talking about a child that had cancer? Mental illness is just as it indicates, an illness.

I’m writing this for every parent who has a child who is dealing with mental health issues. You are not alone and you don’t have to stay silent. You can do what you need to do to use your voice. You can be private about these issues or you can speak out. You can internalize them or you can tell the truth in whatever way you need to: whether that’s in your journal, call friends and family, or speak about it online. There is no right answer to this struggle. Just know that your experience is valid and your feelings are real. I’m listening. We should all be listening to your story, because one in four people in this country have a mental illness and one of them is my child.

Sarah Fader 10 Step Depression Workbook

Sarah Fader is the co-author of The CBT-based 10 Step Depression Relief Workbook, which is available on Amazon. She is the CEO and Founder of Stigma Fighters, a non-profit organization that encourages individuals with mental illness to share their personal stories. She has been featured in The New York Times, The Washington Post, The Atlantic, Quartz, Psychology Today, The Huffington Post, HuffPost Live, and Good Day New York.

Sarah is a native New Yorker who enjoys naps, talking to strangers, and caring for her two small humans and two average-sized cats. Like six million other Americans, Sarah lives with panic disorder. Through Stigma Fighters, Sarah hopes to change the world, one mental health stigma at a time.

www.sarahfader.com

My Answers to Marya Hornbacher’s Questions

I love lazily copying and pasting content I’ve written elsewhere and repurposing it as a blog post. Once again, I post my answers to Marya Hornbacher‘s follow-up survey questions about whether I see mental illness as a physical disease:

  • Do you consider mental illness a chronic physical disease? Please explain your response. 
    It depends on the diagnosis. Some mental illness is situational and can be overcome - for example, grief resulting in an episode of major depression or trauma resulting in PTSD. Other mental illness is more biologically based, for example bipolar disorder and schizophrenia. I have bipolar disorder and consider it a chronic physical disease which I must manage and treat with medication, supportive psychotherapy as needed, healthy lifestyle choices, and family support. The choices I make daily affect my mental health and stability. I am easily triggered into a mood swing.
  • Do you think the lives of people with mental illness can be substantially improved with sufficient resources over time? If so, what would that improvement require? If not, why not?
    Yes. Proper treatment can result in higher functioning. Improvement requires proper medical treatment, psychotherapy, peer support, family support, and community support.
  • Do you think the current boom of research into the brain will result in better treatments for psychiatric disorders? Why or why not?
    I hope so. I believe in advancing medical knowledge. There is a growing body of research indicating a brain/gut connection, as well. Our physical and psychiatric health is intertwined.
  • Have you heard of the recovery movement? If so, what do you know about it? 
    Yes. I have participated in NAMI (National Alliance on Mental Illness) Peer to Peer course which promotes a recovery model. Recovery does not mean cure, nor does it mean that those of us who live with serious mental illness experience linear positive improvement in symptoms or functioning. Recovery can be cyclical. We can and do experience setbacks. The key is that there is hope.
  • Do you think there is a need for more public attention to mental illness? If not, why not? If so, what do you think still needs to be addressed? 
    Yes, especially for those most sick. Although I do like challenging people's assumptions and biases regarding mental illness, the fact remains that those of us who are sickest - those of us whose illness results in poverty, joblessness, homelessness or incarceration - are at greatest risk. Unlike the most needy populations, I have family support and a higher level of functioning. Still, if I wasn't married, my life circumstances would be far different. I would be living on disability income only, which would put me and my son at or near the poverty level. Those of us whose mental illness results in poverty, homelessness, and incarceration need the most resources. That is where we should be spending our money. Incarcerating people with mental illness is extremely expensive, and not the proper way to treat mental illness. If we spent money preventing the most costly effects of mental illness, we would be addressing the greatest needs.

Marya Hornbacher’s Research about Mental lllness

What do you know about mental illness?

By Gabby Abbott | Apr. 15, 2015 | 285 Submissions

Author Marya Hornbacher is working on a book about mental illness. Her book will profile the lives of people who have a mental illness or who work in the field, and she’s trying to develop a deeper understanding of how the public views mental illness. Perhaps, you would like to respond to her query and share your story or insights with her.


Here are my responses to the questions asked by Marya Hornbacher through the Public Insight Network.

  • How would you describe your knowledge about mental illness?
    I am very knowledgeable about mental illness.
  • Has mental illness affected you personally? If so, how?
    I live with bipolar disorder. At 18 years old I was a suicidal biochem major at UCLA. Not until I was 39 was I diagnosed with bipolar disorder, common for those of us with bipolar disorder type II. My son has struggled with mental health issues, as well, first seeing a psychologist at 4 and a psychiatrist at 5. I grew up in an alcoholic family, likely self-medicating for mood disorders.
    
    Professionally, I once worked as a psychotherapist and maintain a California license as a Marriage and Family Therapist. When I worked in the mental health field, I specialized in severely emotionally disturbed adolescents.
    
    Now I am a mental health advocate, primarily through my writing at kittomalley.com. I also volunteer with NAMI, the National Alliance on Mental Illness, the US's largest grassroots organization dedicated to mental health.
  • Do you think the effects of mental illness on society are being addressed? Why or why not?
    Yes and no. We are making great progress in that people are speaking out against stigma and sharing their stories. We still have far to go to combat prejudice, discrimination, and misinformation and to realize mental health parity. Mental health parity exists only on paper. Practitioners and insurers alike to not offer equal service or coverage for mental health. I've had multiple psychiatrists have me sign a form acknowledging that they refuse to accept Medicare patients. Those of us on Social Security Disability (SSDI, in my case) rely on Medicare for all our health care needs. Without proper psychiatric care, our LIVES are at risk, for we may well kill ourselves. That is simply a fact. Mental illness kills. Suicide kills.
  • Is there enough social and medical support for people with mental illness? If not, what would you change? 
    First of all, there are services which people are not aware of. Then, there are barriers to receive those services which are available, such as labyrinthian social service bureaucratic hoops. In addition, many live outside urban centers where services are prevalent. Those in rural and even in suburban areas are isolated from peer support. When we lived in the High Desert (Mojave Desert), the quality of healthcare in general was inadequate, and behavioral health care options were limited. Many people I know through my online activity must drive long distances, up to 90 minutes each way or farther, to see a psychiatrist or psychiatric nurse practitioner.
  • How do you feel when discussing or reading about mental illness? 
    When discussing mental illness, I am confident, for I do not fit most people's misconceptions of mental illness and I enjoy challenging their assumptions and biases. When reading about mental illness, I find myself sometimes offended by misinformation. Most infuriating is when the media, usually television, misrepresents mental illness as if everyone with mental illness is dangerous or as if everyone who is dangerous is mentally ill. Neither is true.
  • Do you associate mental illness with violence? Why or why not?
    Not everyone with mental illness is dangerous and not everyone who is dangerous is mentally ill. Still, we must overcome stigma and address the need for accessible mental health treatment to lessen the negative costs, including harm to selves and others, of untreated mental illness. 
    
    Even though I receive treatment for my mental illness and my mental illness is less severe than many's, I have lost control and raged. If I did not actively seek help, if I did not have the insight to understand that I have an illness and need help which for some is symptomatic of their illness, I could, quite honestly, at times be violent. Then again, the potential for violence is quite human. The history of war bears that out. Not all soldiers, not all military generals, are mentally ill. Though warfare itself takes its toll (PTSD).
  • How would you respond if a group home for people with mental illness attained a building permit in your neighborhood?
    Here we have the classic NIMBY issue, don't we? Honestly, I wish I was able to rise above my own internalized stigma, but I'm not so sure that I could. I fear for my son. I fear for him to have ME as his mother, even though I am a devoted mother who works HARD to be the best healthiest mother I can be. If I fear my OWN behavior, might I not fear others? Yes, I'm sure I would. I'm protective of my son. I hate to admit it, but there it is. I hope and pray that I could overcome my own fear -- my fear of my own rage and potential for destructive behavior, my fear projected onto others who may not be as motivated or able as I am to seek and receive the excellent quality of care that I seek and demand, and who may not be as far along in their mental health recovery.

What is the Public Insight Network?
American Public Media‘s Public Insight Network (PIN) is a platform for connecting trusted journalists with knowledgeable sources. Through PIN, people around the world share what they know to inform reporting by PIN partner newsrooms, making news coverage more relevant, diverse, transparent and trustworthy.
Learn more »

Been Busy

Friday: Attended NAMI Advocacy Training. Saturday: Prepared parents' income tax return. Sunday: Finished our income tax return. Monday AM: Fed son & got him to school.

No wonder I’m exhausted! Friday I attended a NAMI California Regional Meeting in which we participated in NAMI Smarts for Advocacy Training.

NAMI Smarts for Advocacy is a hands-on advocacy training program that helps people living with mental illness, friends and family transform their passion and lived experience into skillful grassroots advocacy.

Basically, we learned how to turn our story of lived experience with mental illness into a two-minute pitch to ASK for specific change, such as voting for or against a particular piece of legislation, on behalf of those of us with lived mental health experiences.

BREAK & UPDATE

[Had to go pick up my son from school… He made it through two hours… Now back home sick to his stomach, needing to be in close proximity to a bathroom… Even took him to an acupuncturist last week hoping for an answer, a fix… Beginning of June have appointment with pediatric gastroenterologist… Poor kid.]

Here’s my scribbled and scrawled practice sheets:

Kitt O'Malley's Story Practice Sheet for NAMI Smarts Advocacy Training. Basically illegible handwriting. I will try to decipher in the text that follows.

So, my notes are not exactly neat and tidy. Here’s my transcription of them for those who cannot read them (I know I can’t):

My Introduction

Hello, I’m Kitt O’Malley from Mission Viejo, CA. I’m a member of NAMI Orange County, CA, part of America’s largest grassroots mental health organization, the National Alliance on Mental Illness. As someone who lives with bipolar disorder, I’d like to share my story with you and ask for your support of [ASK – here I would ask for something specific in support of those living with mental illness and their families].

What Happened

I was an honors biochem student at UCLA when I became suicidal. I had high hopes of someday becoming a neurosurgeon, but had to quit UCLA due to my illness. I still managed to get an education and become an LMFT (Licensed Marriage and Family Therapist) in my 20’s. Over the years I was treated for depression using psychotherapy and antidepressants. My work history during these years was one of many starts and stops, constantly overworking until I again became depressed. Finally, at the age of 39, it became clear that I had bipolar disorder. Still, I tried balancing the demands of coping with bipolar disorder with parenting and working in commercial real estate. By the time I was 41, I was hospitalized for a breakdown.

What Helped

A combination of medication, supportive psychotherapy, and the support of my family, especially my husband, enabled me to achieve stability. I benefited from excellent hospital and partial hospitalization programs in which group activities offered both structure and peer support.

How I’m Different Today

Today I am an active mental health advocate through my volunteer work with NAMI and through the use of social media, including blogging. I have found purpose in this work, even if I’m no longer making the big bucks.

What is the Need or the Problem?

Far too many people do not receive the treatment that I sought and received.

What Will Help Others

We need public education to fight stigma which keeps people from seeking help, and better day programs and hospital programs for those living with serious mental illness.

My “ASK”

Thank you for taking time out of your busy schedule to meet with me. Can I count on you to [ASK – here I would ask for something specific in support of those living with mental illness and their families]? Thank you.


Orange County Health Care Agency Behavioral Health

After this training, four Orange County Mental Health/Behavioral Health Directors gave presentations on the services provided by the county, including those programs made possible through the California Mental Health Services Act (MHSA). Then we broke into four groups, each group meeting with one of the four county mental health leaders, and had the opportunity to ask questions and give feedback as stakeholders in mental health services.

Thank you, Mary Hale, Deputy Agency Director Orange County Health Care Agency Behavioral Health Services, Jeffrey Nagel, PhDMental Health Services Act (MHSA) Coordinator, Anthony Delgado, LCSWAdult & Older Adult MHSA FSP Programs, and Jason Austin, MA, LMFTBehavioral Health Services Navigation Administrative Manager.

Orange County Behavioral Health Information & Referrals 855-OC-Links (625-4657) or TDD Number: 714-834-2332

855-OC-LINKS [625-4657]  (8 am – 6 pm)
TDD Number: 714-834-2332 (8 am – 6 pm)
OC Links LIVE CHAT at ochealthinfo.com/bhs/about/pi/oclinks (8 am – 6 pm)

Stuck to the Couch

Kitt Stuck to Couch

Another brief update as I’m taking it easy, trying to get myself over yet another bout of gastroenteritis. (I do not suffer nearly as much as my son does, but it has me struck me down, glued to the couch, not wanting to stand or make any sudden movements.) Anyway… This upcoming weekend I am training with NAMI to become a Provider Educator, that is one of their panel members who teach mental health providers what it is like to live with a mental illness or be a family member of someone living with a mental illness. Since I’ve been licensed in California as a Marriage and Family Therapist (back in the day the license was MFCC for Marriage, Family and Child Counselor) dating back to July 1990, even though I haven’t practiced in over twenty years, I attended the training as a provider (and hopeful future NAMI provider trainer) and received FREE (yahoo! free!) continuing education units (CEUs) towards my license renewal. What a deal! Usually you have to pay for CEUs. You wonder what I’ve done in the last twenty years, if not psychotherapy. Well, heck, go check out my LinkedIn profile.