How Does Having a Child with Special Needs Make you Feel?

Then she said as I was walking away, ‘but how does having a child with special needs make you feel? Deep down?’

I stopped in my tracks. I whipped my head around, almost as if I’d been slapped.

‘Why don’t you come back and share with the group Kate. What are you feeling?’

I just stared at her. This lady. Some nerve.

Trying to get to the center of my feelings. Trying to dredge them up. All so we can talk about them. And I can heal.

That’s the goal right? To heal.

To accept fully the life that was given to us. To be at peace with having a child who will never grow up. Who will need lifelong care.

To be the elderly mother who bathes her adult son, ties his shoes, wipes his mouth and tucks him in.

‘Why don’t you come back to the circle Kate. Tell us,’ she said.

I smiled calmly and made my way back. And began.

‘Well, my name is Kate and I’m scared.

I’m f*cking scared. I’m so consumed with fear that at some moments I can’t even breathe.

I feel like there is a weight on my chest and my back. Hunching me over. More and more weight added daily. But here’s the cruel joke. The weight is invisible. And we can’t talk about the weight. And no one understands the weight.

So, I smile. I keep going. Because really there is no other option.

But I’m scared. I AM SCARED OF EVERYTHING.

I am scared of the present. I am scared of the future. And I am traumatized by parts of the past.

I’m scared of dying. I’m scared of my son outliving me.

And you know what? That’s not even the truly terrifying stuff.

Because that’s years away. I’m scared of the world today. The one I send my son out into.

I’m scared of someone hurting him. I’m scared of strangers.

I’m scared that someone who comes in contact with him will be having a bad day, a crappy night sleep, or just be a cruel human and will hurt him.

Sexually. Physically. Emotionally. And he won’t be able to tell me. So the abuse will continue.

Do you know his father and I check his body for bruises? For trauma? During every single bath.

I’m scard of finding him floating in a pond. Or watching him run into traffic.

I’m scared of him growing up. I’m scared of him being a big man. Of him melting down in a public place and someone getting hurt. Of the police coming. Of losing control. Of not being able to protect him from himself.

What if I can’t save him? What if I can’t keep him safe forever? Because it’s on me. Solely and completely on me. Do you get that? Do you understand that?

I have to keep someone safe that doesn’t understand. That in a way, craves danger. I can’t rest, because he needs me. Every second of every day.  

And you know what?

I’m angry at times. Viscerally angry. Because this isn’t fair.

I don’t understand why. Why my kid? Why my son?

Why not someone elses kid?

I’m so unbelievably mad sometimes. It’s as simple as that.

I’m angry he won’t get married and have babies. I’m angry that this is the hand he was dealt.

I’m angry he is almost 9 and we have never had a conversation. He has never asked me a question. We’ve never had a conversation over lunch or talked about anything.

I’m angry that God did this.

I’m angry that so much was stolen from him. And me.

I won’t teach him to drive. I won’t drive him and a girl around on their first date.

I’m angry he won’t sneak his first beer, know the butterfly’s of a first kiss, or the devastation after a job rejection.

I’m angry I won’t be at his college graduation or his wedding. I won’t hold his new baby at the hospital.

And you know what really makes me angry?

People telling me I shouldn’t care. That I shouldn’t care about anything really. Because caring that your child doesn’t have a friend and say mom makes me a monster.

Do you know I have to end every sentence with but I love my child? Because people think talking about the hard realities of severe autism equate to less love. What a joke.’

I paused. Caught my breath. Collected myself. And went on.

‘I’m in acceptance lady.

I have two feet planted firmly here. I’ve placed my flag and built my house.

Some days I swear I have won the lottery. I get to live in a magical world of colors, sounds and numbers. I get to have the joy of a child forever.

I will do everything in my power to give my son his best life, to push him, to change the world for him.

I will see the joy in this life. But at the end of the day, when I climb in bed, and I strip everything away. I am angry. And I am scared to death.

And the most comical part? These jokers tell me I’m doing to wrong. That what I’m feeling is wrong. Ha. That I should only see beauty. That the fear and worry and anger and guilt are all wrong.

With all due respect, special needs parenting is the only world where you are judged for saying it’s hard.

You do everything, every second of every day for a vulnerable, challenging human, and you say it’s hard once and the damn vultures swoop in. They strike. And make you question every single part of your life.

You want me to get over this. That’s the purpose of this group right?

Well, I am doing the best I can and that is all you can ask of someone. But you don’t ever fully heal from this.

So there. That’s how this makes me feel.’

I looked up. Made eye contact with her. The rest of the group.

I felt embarrassed. Vulnerable.

‘Thank you Kate. That is the most honest and accurate account of special needs parenting that I’ve ever heard.’

This is an exerpt from a support group I attended.

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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