The Stigma of Being a Special Needs Mom With Depression

There is a stigma around depression. A really, really ugly one. And I think there’s especially a stigma around mothers who have depression. If you’re depressed, you’re weak. Broken. You are medicated. You cry a lot. You sleep a lot.

This isn’t true. At least not for me.

I’m not weak. I’m freakishly independent. I’m not broken…completely. I am not medicated. And I rarely sleep.

In saying that….

I just came out of an extremely low few days. Sadness is not an accurate description. I would say I was depressed. Although the joke is…”if you can ask if you’re depressed than you probably aren’t.”

It usually centers on Cooper’s health. His history involves many years of chronic ear infections and severe constipation. Cooper’s pain tolerance is so high that his pain manifests in him not sleeping, eating, and eventually hitting and aggression. If these behaviors start, it’s a puzzle to fix him. And doctors and yelling and begging. And me saying the sentence, “Quality of Life” so many times I could barf.

I have a child in pain and I can’t fix him. That’s heavy. Then add in no sleep. Teachers and therapists telling me he’s acting different. The pressure is on.

And I love him so unbelievably much.

Then I start to spiral.

I’m a ridiculously strong mother of a severely autistic child and I get so depressed that sometimes I can’t see straight. Or think straight. I push every single person away from me. I become a martyr that will save my child. And protect him.

And oh my God is that lonely. There are days when I can’t stop thinking about how I’m going to die alone caring for this boy.

As mothers, we’re supposed to be invincible. As a caregiver, it’s even harder. I was given a battle in the form of a child. A fight that I didn’t ask for.  A fight that I will fight until the day I die.

And in the process, I lost who I was and a whole lot of hope and sanity.

I believe I went a little crazy. I sat across from Cooper’s dad yesterday and apologized for being heartbroken. And for fighting this fight in this way. It’s the only way I know how to do it. And I apologized for not being strong enough. For being broken.

I’m not a doctor or a therapist. I’m not an expert in autism. I wasn’t given a special class on how to handle autism. I was thrown into it. And I’m doing the best I can. And sometimes maybe I come onto strong. Or from the wrong angle. Or maybe too aggressively. But it’s the only way I know how to be.

Caregiving for a special needs child has given me a depression I don’t want to admit is real. Because if I do, I’m showing a weakness I’m not allowed to have. In a way, I’m admitting how hard it is.

Stigma of Being a Special Needs Mom With DepressionWe don’t have time to be sad. We don’t have time to get help. We give so much of ourselves to these little humans and to our jobs and spouses that we couldn’t possibly take a moment to be sad.

Caregivers are seen as strong. As fighters. As invincible.

The funny part is a true caregiver doesn’t have time to seek out counseling. I’m often asked by people who truly care about me how I’m handling Cooper’s diagnosis.

I don’t have an answer.

I survive mostly. Every few days, there’s a new behavior. A new appointment. A new form to complete.

But God I am sad.

I am so sad. There are days and weeks where I’m fine. There are days and weeks where it’s hard for me to get out of bed. But thankfully I have two little boys that need me to get up.

There are times where I can’t hear another child’s voice. Countless nights where I dream of him talking.  Times when I agonize over Cooper and all the things he’ll never do. Times where I will actually rip up paperwork and say F*ck it.

There are minutes where I stare at Cooper and wonder what he’s thinking. How I would do anything or give anything for him to talk to me. Engage with me.

There are times when I’m changing my almost six-year-old’s diaper and I tell myself I’m a failure. I will get poop on my hands. And poop on my floor. And more recently poop on my bedding…three nights in a row.

There are times when I need a break from Autism. And there are people who have made me feel weak because of that.

They are assholes.

There are times when I’ve blamed God. I’m so unbelievably angry that he gave me this child. What did I do to deserve this? Why me? Why my family? I am working on the God thing. I am. It’s coming along.

There are days when I break down and cry and wonder how I am going to help this kid. How am I going to know if he’s in pain? How do I get doctors and therapists to listen to me?

There are days when I blame all the family and friends who don’t help Cooper. Who don’t take the time to get to know him. They are also assholes. And that’s part of the journey. Recognizing that not everyone can be part of my autistic kid’s life.

Blah, blah, blah.

Depression is real.

Recognizing depression is good. And being a caregiver is so hard. It makes me feel invisible. I guess that’s why I write. I need someone to know what I’m doing for this little boy. Not to get a thank you or a pat on the back. I just need someone to know how hard it is to keep going every single day when all I want to do is give up.

I don’t have time for therapy. And I don’t need medication. But as a caregiver, I need to stop being so hard on myself. I need to take a break once a while. And admit when I’m heartbroken.

I admitted it yesterday to a very important person. He held my hand, told me I was doing a great job, and I immediately felt better. The weight had been lifted a little.

I’m not sure if the depression will ever go away. To be honest, I wonder if it’ll get worse as Cooper gets older.

The milestones are only getting bigger. Who knows? Only time will tell I guess.

Stigma of Being a Special Needs Mom With Depression

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3 thoughts on “The Stigma of Being a Special Needs Mom With Depression

  1. I just sobbed and sobbed when I read this. My heart has been broken, in my opinion it is torturous to watch a child suffer and not being able to help them. I feel it’s hell on earth.My son just turned 8 this week and yes it brought me down and I go for counseling and I also needed a bottle of white discs at some points in my journey. Wanna share with u something I wrote about the pain.

  2. Now i wanted to capture the essence of my loss of Teddy but believe it or not there was no more room on my canvas. I found another large canvas and once again i Took out my black paint and watched it spread and spread until the whole canvas was saturated in black. Now i grabed my red paint and began to pour until it spread over almost the whole canvas at this point i threw myself on the canvas and just sobbed and sobbed and i lay there covered in black and red paint and i turned my eyes upward and i said, God this one i cant do, you created me with the most soft compassionate heart, i cant i just cant endure so much pain, i threw my arms up and i said God as i truly believe that you have a master plan, i throw up my hands and beg you to take charge to hold me in your……
    Humanly I cant you gave me a soft heart a tremendous amount of intuition and now you need to hold me, i lay here covered in black and red paint and no i cant accept the heartbreak. There is only one answer …
    i have no more strength!!!

  3. You’re sharing MY story right here! I have two sons with low functioning autism. The older one says “sorry” and “thank you” and the younger one has never said a single word. Neither are potty trained and neither like wearing diapers of any kind (or clothes for that matter). They’re 14 and 16. It beats me down frequently. As they get older, larger and stronger I get more and more concerned for their well being and how I’ll be able to manage their aggressive behaviors.
    My last two days have been unbelievably challenging so stumbling upon this was incredibly therapeutic. I know many women with autistic children, just one with a son like my two boys. I’m usually the only mom in a parent group with the issues I live with. It’s isolating. It’s heartbreaking. Many don’t get it and never will.

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