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 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.
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Thank you for sharing your experience parenting a son w8th Dravet Syndrome and mental illness. I know how, as a parent, it breaks one’s heart to see one’s child suffer, and I know how exhausting it is.
Gosh, we deal with this too. My son has a severe seizure disorder called Dravet Syndrome & he has also mental illness. Both are so difficult to manage. I’d love for you to read my first blog about my son with special needs. http://cruelandunusualcircumstances.com/2017/11/20/i-love-to-wonder/
Thank you for sharing your story and your perspective. I found your post about dealing with over-protective parents helpful:
I was born with various disabilities and it means a lot to me to hear about it from a parents perspective. I just started blogging about my personal journey and the relationships with parents.
check this out
Thank you so much. It means alot to me 🙂
Thanks! Added my link and invite others to do the same.
Hey, hope you are doing well.
I invite you to read a post of mine where I am gathering links of warriors facing mental health challenges 1st hand to educate people, to raise awareness and acceptance.
I need help from you in breaking stigma.
Here is the link to post.. https://stoneronarollercoaster.wordpress.com/2018/04/27/mental-health-awareness/
Your participation can change life of someone.
Thank you 🙂
SarahFader.com did a great job with this article. We both parent challenging kids.
Great post! I also have a son with special needs and it’s hard to share with others the realities of this life.
Not easy. Not at all.
I enjoyed reading your post and can relate 100%. I am the mother of a special needs child too.
I do, by writing online. I live on disability for a mental health disability.
You’re too sweet, thank you. I like to think my journey to motherhood is in fact making me a better mother, too. 😘
would you like to help people with disabilities?
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Thanks! Sarah Fader wrote this post, but we both have struggled to raise sons with special needs.
I can only imagine. There’s lots of people out there that think that way it sounds like. But there’s also people who believe you are an amazing momma and doing everything you can for you child. And I’m one of those 🙋🏻♀️
I agree. Unfortunately, parents, mothers in particular, are blamed when their children have psychiatric or behavioral issues. The harder you work in trying to help, the more “enmeshed” and “co-dependent” you are considered. It’s tough.
It baffles me that people feel that they have the right to judge you or any parent dealing with a child with special needs. I think it just makes you stronger as a momma and a woman to share your story with all of us.
Early intervention helps. I applaud you for teaching your kids emotional intelligence and much needed coping skills. Your compassion, insight and personal experience help you to be a better mother. Your children are blessed to have you, too.
I love your passion for your son. As a Mom who has suffered from anxiety and depression, I worry about this for my children. Teaching them to cope with their big emotions at a young age has become a full time focus for me because I am hoping as they get older, they have the skills to address anything that they are feeling. Your son is lucky to have you.
If our schools REALLY increased funding for counselors, that would be wonderful. Unfortunately, my son (don’t know about Sarah’s) never liked sharing his feelings, finding talk therapy unhelpful. He is helped more by medication, as his anxiety and depression are linked to his migraines (neurologically-based). Every child is different. It would be wonderful for children to have nurturing relationships with all the adults in their lives, including their guidance counselors, teachers, coaches, and parents. I struggle to get my kid out of bed. He gets sick too often and struggles with migraines.
I’m a former educator, and this post got me thinking: I wonder if it would be helpful for each child, as a student, to be given a monthly meeting with the guidance counselor at their school. This way, there is no stigma, because every child gets one. The goal would not be to solve a child’s struggles in a monthly visit – that would be crazy to assume. Rather, the goal would be to help children become more comfortable with the process of sharing their feelings or concerns. Because the counselor is a neutral person, and because there is no stigma, maybe some struggles would be revealed that might not otherwise?
Sarah did a great job on this piece. She writes really well.
Unfortunately, it doesn’t always feel like that, especially when our children struggle at a young age with behavioral issues and have special needs that don’t respond to treatment. My son has had migraines since he was a toddler. Then behavioral issues, ADHD, depression, anxiety. It’s tough when there are no easy answers or cure. I’ve tried just about everything to help him.
Kitt – well written and presented – There is and always be a great support!!
Thank you, there is a world of support out there!
❤❤❤❤ made my heart fuzzy xx big hugs
Really touching. Thank you.
And many thanks sent right back your way.
So glad that you are finally getting the care and counseling you need. Healing prayers sent your way.
You could’ve used it for a gargle. Salt water gargle is good for sore throat as long as it isn’t TOO strong.
Well, now that I’ve been receiving proper care and counseling for the last 5-6 years, I have a life that I never even knew was possible all the time I was growing up. That’s why I encourage people to try and find the proper people to talk about these things with if they feel the time is right for them to do so. They need to know they don’t have to bear the burden all by themselves unless they absolutely choose to. And thanks to you for everything you do.
Thanks so much – loads better today. Gave up that sole water when I had strep because can you imagine the pain of concentrated sale water on a fiery red throat? And I didn’t like doing it anyway, so it’s out the window! I’m fickle, but my intuition said that there are other holistic ways out there to feel better. And it helped to read that article you shared with me, too!!!!! I think it’s one of those things where you can find people who believe in it 1000% and then their opposite and there are various studies to prove both sides. Xo
Take care of yourself. Let your body heal. Sending you love and virtual lemon and honeyed tea.
That is absolutely horrifying. I am so very sorry that you underwent that extreme physical (and emotional) abuse. No child should live in fear.
Thanks so much, Kitt! To go from feeling 100% healthy to less-than-human in just a few hours was scary as hell. I know you get it! I’m feeling so much better today. Trying not to overdo…..
There is help out there for these things we suffer from, although I myself was never suicidal. The attempts on my life came from other people within my family. Hence the PTSD resulting from the childhood trauma.
So sorry that you suffered from such a young age from depression suicidality without counseling. My son first vocalized suicidal thoughts when he was about five or six. Luckily, we saw a psychiatrist for him at the time. He’s never been much of a fan of therapy, preferring medication. Now, he’s using hypnosis to try to get a better handle on his depression, anxiety, and migraines (they are all intertwined).
Hope the penicillin gives you quick relief of symptoms. Get well!
Take care of yourself. Hope your eardrum heals soon, and you no longer suffer from vertigo. Just wanted to give Sarah credit for her work.
I can relate to what was said by Sarah about people’s reluctance to talk about things. After the second attempt on my life at the age of 10 or so, I started having nightmares that would wake me up screaming. No one ever got me any counseling, and it was made clear to me that I wasn’t to talk about “those things” with anyone outside the family. When I left home, I continued to follow the behavior I had been taught…no talking about it. When my life finally shattered at the age of 55, I finally got counseling for the PTSD that had basically ruined my entire life up to that point. All because no one would talk about it.
It’s strep! And yes, strep is way better than mono (I had that when I was a teenager and I missed a lot of high school – and it wasn’t through a kiss, LOL!) -ugh) and this year’s flu!!!! God bless penicillin! XOXOXOX
Sorry Kitt, I didn’t word that very well. I meant your post. I’m currently trying to think with a burst eardrum on top of some vertigo and my thinking is not working very well at all…but, after all that, your putting up this ‘post’ is helping to remove those stigma’s, well done 😀
I’ll go lay down for a while now 😀
Hope no strep throat, and if so, quick cure with antibiotics. Strep is better than mono.
That she is.
Written by Sarah Fader. She’s a pro.
Waiting at urgent care for possible strep throat. 🙁 I echo everyone’s insightful and appreciative comments!
Sarah is pretty awesome.
Thank you Sarah for sharing Ari for all the other people.
And, yes, the mental health world does come out of nowhere/out of the blue for so many.
Well written Kitt. Mental health issues are slowly being absorbed into our communities and the attitudes are beginning to change. It takes many stories to realise just how prevalent these conditions are within our lives and your story is helping that change <3
Thanks for sharing Sarah’s piece, Bob!
I totally agree.
I totally identify with Sarah’s struggles. I’ve had my own with my son.
Reblogged this on cabbagesandkings524 and commented:
Guesting on Kitt O’Malley, Sarah Fader of Stigma Fighteres writes on parenting a special needs child.
It’s amazing to me that people STILL have problems hearing others talk about mental illness or their child’s mental illness. I’ve heard stories of families that refuse to acknowledge a child’s illness; it’s sad, unnecessary, and unhelpful! Kudos to Sarah for getting her child help and for speaking out. We need her voice, and yours, Kitt!
Great article, Kitt. I’m so sorry to hear of Sarah’s child’s struggles. I hope things improve for them.