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

Flight Back Home

Friday, July 15th

Last Saturday, the day after we returned from Oregon, my mother was psychiatrically hospitalized for the third time since her stroke last November. Yesterday morning, I met with the treatment team at her psychiatric hospital. They do not think she needs long-term psychiatric placement. They believe her memory care community is the best placement for her and that she’ll just likely need regular “tune-ups,” returning to the psychiatric hospital when she refuses to take medication and her mental health deteriorates.

Luckily my parents’ house sold, with escrow closing yesterday. This morning I met with a financial planner to invest the proceeds from the sale on behalf of my parents and schedule regular withdrawals to pay for their care. Long-term memory memory care is expensive.

OR Trip
Oregon was beautiful and offered a relaxing break.

Flight Back from PDX to SNA – July 8, 2016

Before returning our rental car at PDX, we stopped for gas. While making a pit-stop, I received a call from my mother’s memory care community which I let go to voicemail. Inopportune time to take the call, as my purse hung on the restroom door handle out of my reach, and I didn’t want to dribble, squat and waddle over to answer my phone. Instead, I’m sharing the impolite (and perhaps amusing) imagery that came to my mind as the phone rang (to temper the vulgarity of the scene, my ring tone is Take Five by Dave Brubeck – yes, I love jazz).

The voicemail confirmed that once again my mother refused to take her medication and threatened violence against the nursing staff at her memory care facility. Once again, time for psychiatric hospitalization. This is getting old. Really old.

I fear my mom may need long-term psychiatric placement. Locked psychiatric care 24/7. Do not know what is available. Time to reach out for help. Time to research geriatric psychiatric residential placement for mom. Fuck.

That’s all I have to say on the matter. I do feel myself coming to tears. I fear, too, ending up like mom. Crap.

Shit.


Now I’m just spent. I did have a good time this week in Oregon. It was a nice break from my life, from my responsibilities, from the mess and clutter that is our house, from the mess and clutter that is my life.

We went to the wedding of one of our many nieces last night. They wed under Cathedral Bridge (St. John’s Bridge). The bridge is built with stunning Gothic arches and a backdrop of trees along the river. Then we had an incredible dinner at Plaza Del Toro. Very upscale and gourmet. So delicious. Loved it. Wish we had that kind of food in our neighborhood.

I look forward to getting away again and again and again. I need these breaks, these respites.

 

Conferences This Summer

BlogHer16_Going_300x300

 

In August, I will attend (or at least I registered for and paid to attend) two conferences: #BlogHer16: Experts Among Us in Los Angeles and NAMI California: Back to the Future – Building on the Past for a Better Tomorrow in Burlingame, a suburb of San Francisco near SFO airport.

 

 

BacktotheFuture-Final1-300x217

I’m kind of freaking out, worried about going to the conferences, nervous that I may become overwhelmed and trigger mood cycling (live in too much fear of triggering symptoms). I plan to stay in hotel rooms by myself, for that will enable me to recuperate each day, and will give me somewhere to hide and decompress.

 

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As part of #BlogHer16, I joined the BlogHer Social Media Influencer Network, enrolling four of my social media channels for potential advertising: Facebook (personal profile), Facebook Fan Page, Twitter, and Instagram. This site will remain ad-free (for now).

Using my social media presences to advertise is a completely new thing for me. The ads will be clearly labeled as such (as is legally required). Honestly, not sure how comfortable I feel about it. Testing the waters…

Anxious about Dementia

So here I am, in my car, which is pretty hot. Probably have to open the windows to let in some air. Just going to make it hard for anything to be heard. Oh, oh, that feels good.

Okay. I’m on my way to the Alzheimer’s Association of Orange County, or whatever it’s called, Alzheimer’s dot org of Orange County. ALZ.org for those who want to check out the national Alzheimer’s US group. But I’m going to the local OC chapter’s educational series. The first one is Basics – Dementia Basics. I’m driving, so I’m not necessarily getting the title totally correct.

I’m actually pretty anxious going to it. Anxious because, well, this is pretty emotionally trying for me having both my parents with dementia right now. My mom’s struggling with what’s called vascular dementia, which is secondary to her stroke, and can be caused by heart problems, blood pressure, high blood pressure. All those things can damage the brain. Right? High blood pressure goes up, damage to the brain. So, and her stroke was the most damaging to the brain. Just horrible.

And, my dad has been struggling with memory loss for many, many years. This last year it’s just taken a real dive. He still has his social skills, but his memory is pretty fried, especially his short term memory. But he’s able to reason. His intelligence is there. It’s alcohol-related dementia. Some people are more susceptible than others. Have people drinking the same amount of alcohol. One gets cirrhosis. The other gets alcohol-related dementia. The other gets nothing. So, you never know what you’re playing with in terms of your deck, and you better take pretty good care of it.

I try to do my best. Well, I don’t do my best. I try to do my better. (Laugh) I don’t exercise enough. I know that. I’m taking cholesterol meds rather than strictly adhere to a low fat diet. I try, I look at the fat content in everything, but I just have my weaknesses, especially since my mom had her stroke. I’ve put on at least ten pounds, maybe fifteen. I think it’s about ten pounds according to my physician since her stroke, and it’s pounds where you don’t want to have it, on your stomach. That’s the area that’s not good for your heart.

Heart health is what I really have to take a look at now as somebody who is susceptible to stroke. My grandmother died, my maternal grandmother, my mother’s mother, died of stroke, and she’d had several TIA’s, which are like mini-strokes, before that. So, anyway, just checking in.

I am Ashamed

Dusty Lamp

I’m ashamed. Ashamed of the dust. Ashamed of the clutter. Ashamed that I do not, that somehow I cannot, bring myself to keep my house clean.

This afternoon, as I sat working at our dining room table, my husband just touched the dusty lamp above me, and I started coughing, choking, asthmatic that I am.

My son suffers with eczema, with asthma, as do I. Still I leave the dust undisturbed, afraid of another asthma attack.

Too ashamed to ask for help. Too ashamed to hire help. Too ashamed to let anyone in. Too overwhelmed to attack the job myself.

Now my husband Nick chokes and coughs himself, as he cleans the lamp of its dust. Thank you, Nick, for all that you do.