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

Hypnotherapy

Hypnotherapy Mind Body Connection KittOMalley.com

Last Friday, I drove my son down to La Jolla (across the street from UC San Diego!) to see pediatric hypnotherapist and pulmonologist, Dr. Ran D. Anbar, MD, FAAP of Center Point Medicine. My son struggles with migraines (greatly improved with recent medication regime), depression, anxiety, eczema, and frequent school absences due to illnesses.

According to Dr. Anbar’s brochure:

Children who use hypnosis:

  • Become empowered to help themselves when they feel poorly, and are proud of themselves for being able to do so.
  • Feel better about themselves and their medical condition because they can help take control of how they feel.
  • Become aware of their inner strength that allows them to cope more effectively with all aspects of their lives.

My mother used hypnotherapy to help her battle non-Hodgkins lymphoma (along with chemotherapy and monoclonal antibody therapy). Hypnotherapy enabled her to feel more in control, and lessened her pain and anxiety. My father quit smoking using hypnotherapy. I’ve used self-hypnosis (all hypnosis is self-hypnosis) to perform well on exams (I studied, too).

Hoping that self-hypnosis will give my son a tool, an effective coping mechanism, not just for somatic illnesses that respond well to hypnosis, but for life. Somatic illnesses are not “just” in the mind. The mind and the body are connected.

Prayer, meditation and self-hypnosis all help body, mind, and soul.

ALPIM Anxiety-Laxity-Pain-Immune-Mood

Many of us living with mental illness have other chronic illnesses. Often we are not treated for our “physical” illnesses, as many doctors dismiss them as psychosomatic. “Mental” illnesses ARE “physical” illnesses, and “physical” illnesses affect our “mental” illnesses. We are not just our brains, just our bodies, just our minds, just our feelings, or just our souls. The more we learn, the more we understand interconnectedness and comorbidities.

The ALPIM Spectrum

In the Spring 2015 issue of the Journal of Neuropsychiatry and Clinical Neurosciences, researchers proposed The ALPIM Spectrum:

  • A = Anxiety disorder (mostly panic disorder);
  • L = Ligamentous laxity (joint hypermobility syndrome, scoliosis, double-jointedness, mitral valve prolapse, easy bruising);
  • P = Pain (fibromyalgia, migraine and chronic daily headache, irritable bowel syndrome, prostatitis/cystitis);
  • I = Immune disorders (hypothyroidism, asthma, nasal allergies, chronic fatigue syndrome); and
  • M = Mood disorders (major depression, Bipolar II and Bipolar III disorder, tachyphylaxis. Two thirds of patients in the study with mood disorder had diagnosable bipolar disorder and most of those patients had lost response to antidepressants).

Study Conclusion

We conclude that patients with ALPIM syndrome possess a probable genetic propensity that underlies a biological diathesis for the development of the spectrum of disorders. Viewing patients as sharing a psychological propensity toward somatizing behavior essentially denies patients access to care for the diagnosable medical conditions with which they present.

– J Neuropsychiatry Clin Neurosci. 2015 Spring;27(2):93-103. doi: 10.1176/appi.neuropsych.14060132

Download the Study

Should you want to read the journal article, I purchased the pdf version: A Novel Anxiety and Affective Spectrum Disorder of Mind and Body—The ALPIM (Anxiety-Laxity-Pain-Immune-Mood) Syndrome: A Preliminary Report (J Neuropsychiatry Clin Neurosci. 2015 Spring;27(2):93-103. doi: 10.1176/appi.neuropsych.14060132). No copyright infringement intended.

Associations in ALPIM Domains

ALPIM SYNDROME FIGURE 5. A Schema Demonstrating Significant Associations Within and Between ALPIM Domains. Anxiety - Pain Attacks (included in Phenotype). Laxity - Joint Laxity Syndrome (Beighton), Mitral Valve Prolapse. Hernias. Scoliosis. Double-Jointedness. Easy Bruising. Pain - Fibromyalgia (included in Phenotype), Headache, Prostatitis and Cystitis. Immune - Asthma, Rhinitis, Irritable Bowel Syndrome, Chronic Fatigue Syndrome, Hypothyroidism. Mood - Major Depressive Episode (included in Phenotype), Bipolar II Disorder, Bipolar III Disorder, Tachyphylaxis. This schematic diagram depicts, via line connections, significant associations within and between the ALPIM domains (see the Results for a description). Table 2 repors corresponding significant probability levels, odds ratios, confidence intervals, and Wald statistics. ALPIM, anxiety, laxity, pain, immune, mood.
J Neuropsychiatry Clin Neurosci. 2015 Spring;27(2):93-103. doi: 10.1176/appi.neuropsych.14060132

Diagram of Comorbidities

FIGURE 7. The ALPIM Syndrome: A Neuropsychosomatic Spectrum Disorder. Schematic Venn diagram showing the hypothesized spectrum of comorbidity in patients having a core anxiety disorder with laxity, pain, immune, and mood disorders. The overlapping circles demonstrate that comorbidities exist along a spectrum, in which a patient might have anywhere from just one disorder under one domain to multiple disorders under multiple overlapping domains. ALPIM, anxiety, laxity, pain, immune, mood.
J Neuropsychiatry Clin Neurosci. 2015 Spring;27(2):93-103. doi: 10.1176/appi.neuropsych.14060132
Bipolar III is cyclothymia, a “milder” form of bipolar than bipolar II.

Writing to Discipline My Thoughts

Disciplining My Thoughts By Writing

This morning I attended an OC Writers’ write-in. I haven’t attended a writers’ group in a long time. Been isolating myself and focusing on my son rather than my writing, rather than myself. Today, I left him home in bed, then left the meeting early to get him to class on time. When I got back home, he was dry-heaving in bed. Crap.

Hate spending my mornings trying to wake him up to do his homework and go to school. He will be seventeen next month. Time to wake up and do homework on his own. Unfortunately, his private school is not within walking distance, nor would it be a safe bike ride, and my kid has no interest in getting his drivers’ license yet. So, I’m still driving him to and from school.

The first week of June, during my son’s summer break when I didn’t have to act as alarm clock and chauffeur, I started cleaning my house with help of my next-door neighbor. She did most of the cleaning and organizing. I chatted and did a wee bit of organizing. We tackled the kitchen, spending two hours on Monday and two hours on Friday.

The second week of June was my son’s first week of summer school, so I took the week off cleaning and organizing. He has a full schedule this summer. He attended most of his classes last week, perhaps because I offered him $10/class/day. He’s motivated by money. It costs more to reschedule his classes than it does to pay him to attend.

Hypomania Raises Its Head (Again)

Last Tuesday in therapy, I said I no longer felt hypomanic. At the time, I seemed relaxed, at ease. By Wednesday my mind was racing. At night, when it was time to fall asleep, to slow down my mind – instead of thinking in my usual monologue, as an orator narrating my life – I heard a cacophony of voices.

I wondered if, when those voices crowded my mind, I should have written them down to see if I was thinking in dialogue. Were the voices characters wanting to be heard, auditory hallucinations, or thoughts racing so fast, I could not make heads or tails of them? Most likely speeding thoughts.

When I couldn’t fall asleep, instead of writing, I medicated myself to sleep. I force sleep when it won’t come on its own.

As I wrote last week during the day, while my son attended school, I could not hear the noise. Instead, I focused on my voice and that’s what I thought. Writing disciplined my thoughts.