Confessions of a Special Needs Parent

Parenting is hard. I think we can all agree on that. You are raising a tiny little human from birth to adulthood without an instruction manual and silently praying they turn out sane and loving.

Now imagine if that tiny little human has a diagnosis of some sort. Autism. Cerebral Palsy. Traumatic Brain Injury. The diagnosis could be physical, emotional or neurological. It could be obvious. Or maybe it’s invisible to the outside world.

Scary, right?

You aren’t a doctor. Or a therapist. Or a physiologist. There is no instruction manual. It’s just you knowing in your gut that something is wrong. It feels like a roller coaster. It feels out of control. And just like parents of typical kids, you have no idea what you are doing. But yet, you are entrusted to raise this tiny VULNERABLE human.

At first, you don’t want to acknowledge it. Then, you don’t want to believe it. But once you get over that hurdle, you want to talk about it. You need knowledge. You need to vent. You need a friend. You need people to understand.

Parent Shaming

You turn to your spouse. Your family. Your friends. Whoever will listen. You need help. You need someone to hear you. But the conversation seems awkward. Strained. The friend looks at you funny. You see judgment. Doubt. They don’t relate. They don’t understand.

You try in the break room with co-workers. You try to vent during Happy Hour. But it never seems right. The looks make you feel shameful. No one gets it.

So, you stop talking. You silence yourself. You start to wonder if you are just complaining. Maybe you are just bad at the parenting thing. Maybe, just maybe, you are making some of it up in your head.

You start to doubt everything.

From that moment forward, you struggle silently. You keep your mouth shut.

When you do mention any of your struggles, you feel the need to put “but I love my child” in every sentence.

I want to tell you that this is wrong and it is an inevitable part of raising a special needs child. It happens to me frequently as a writer and a mother. So, in response, I asked special needs parents to confide in me. I asked for their secret confessions. I asked their deepest, darkest thoughts. I did this because you and I need to know that we aren’t alone. Our feelings are normal. We are human.

Humans who live in a secret world.

My Advice to You, Dear Friend

On your darkest days, I want you to read these words from your fellow parents. And you will know that you are not alone. What you feel is completely normal.

There were 225 of you who sent me confessions. These are my favorites.

“I love my daughter to the end of my entire being. I prayed so hard to become a mom and she is who I got and I love that I was blessed to have her, but sometimes, I really hate that this will be my life forever. I have people who encourage me to see the beauty in autism. But the life I live every day isn’t always beautiful.

“I’m scared I don’t love my son enough. Through the trauma of the diagnosis and the daily difficulties we face I sometimes fantasize about running away. I wish my life was different.”

“The bad days are so bad. And the good days are bad too. It almost seems unreal. Why is this so hard?”

“I’m addicted to over-the-counter sleeping pills. My anxiety is so high over not sleeping that I have to take a sleeping pill just to fall asleep. And I don’t even care.”

“I haven’t told my boys (ages 6 and 4) that they have autism. I know it’s coming. I am terrified.”

I’m not planning for college. Instead I’m planning a way to pay for her care for the rest of her life.”

“I have to message this one because it is so dark to me and the thought scares me and breaks my heart simultaneously. I fear my son will require constant care for his whole life and I’m scared one day I may resent him for it.”

It’s all my fault. #AUTISM”

“I hate people who say it’s a blessing. Autism is a curse. My son is higher functioning, so was diagnosed later (his early symptoms were to subtle to get anyone to listen). No child should have to go to treatment all day instead of playing. I will never consider having another child, I love my kids, and EVERY DAY is a struggle for them, and us. Every time I call their names and get no response, I crumble inside.”

“I fake everything. I am always smiling. I am always laughing. People say I am the strongest woman they know. LIES. I am heartbroken. I love my kids. I love my husband. But I am a different person. And no one understands. I feel like a shell of the woman I used to be.”

“I was telling my best friend I don’t want to have another child because I’m scared they could have special needs or have them worse than my son (even though I want more kids more than anything!) And she said ‘but that’s just hard on you because you have to do a lot for him…would you change anything about him?’And I had to answer no I wouldn’t change him, but the truth is…I would. I would change EVERYTHING!

“Some of the sounds my son makes actually haunt me. I have to wear headphones at times.”

“I relive my pregnancies trying to figure out what I did wrong.”

“I have a ‘sad’ moment every single day about the things that my son will miss out on because of his non-verbal, severe autism. I do everything I can to help him, but it never seems like it’s enough. I allow myself one good, gut-wrenching cry a week. If I didn’t limit it, I wouldn’t be able to function. He was diagnosed 2 and a half years ago, and it hasn’t gotten easier.”

I see no future for my child and it breaks my heart daily.

“I am angry at my husband because he gets to have a job. I have a college degree too and I can’t work because no one else can take care of our son.”

I know my marriage will not survive this.”

“I give up almost every day. Actually that’s a lie I give up every day! Sometimes as soon as I wake up.”

I secretly cry every day. My husband has no idea. He thinks I’m taking a bath or doing laundry.”

“I will never have another child. I actually made my husband get a vasectomy. I could never do this again.”

I grieve over the life I should’ve had.”

“My heart breaks when I think about huge milestones that we will miss. Graduation, Prom, Senior Pictures, College, Marriage, Grandchildren. I’m never going to have any of it. I should’ve had more kids.”

I wouldn’t wish autism on my worst enemy. I cringe and get jealous and emotional when I see a ‘normal’ kid my sons age. When I see them talk or do normal three year old things that mine should but doesn’t it stabs me like a knife inside. It kills me.”

This is a glimpse into the private world of special needs parenting.

We aren’t all that different from parents of typical kids. We struggle. We laugh. We love. We survive. It isn’t always beautiful. It can often be scary. But the world should NEVER doubt the love that we have for our kids. It is fierce.

How do we advocate for something we hate so much? I hate my son’s disability, but I will travel to the end of the world to help him. I am motivated, energized, devastated and heartbroken all at the same time.

The full, original version of this post can be found here.

Kate Swenson

Kate Swenson is a mom to two rambunctious boys, one with non-verbal, severe autism. She shares a glimpse into their life in an honest and uplifting way at FIndingCoopersVoice.com and on Facebook @findingcoopersvoice. She is also a Digital Project Manager for the PBS Website, NextAvenue.org.

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