A Letter to the Family and Friends of An Autism Parent

Dear friends and family,

I am sitting here thinking about our relationship. And about how much I love you. And how I rarely see you. We joke that it’s because life is so busy. We have jobs and babies. Life is crazy. And how some day it will be better. We will have more time. One of these days we will actually get together and do something.

I’m not sure if that’s entirely true though…at least not for me. We are different. We are friends. We are family. But we are different. And we dance around it like it’s not true.

I want to say I am sorry. I am sorry that I don’t make plans with you. I am sorry that I won’t commit to doing anything. And mostly I am sorry that I cancel.

I feel it too. God I feel it. I feel the strain between us. And I miss you.

I know that I am not the woman you remember. I am different. I used to be so much fun. I was up for anything. I know that many of you questioned if I had Post-Postpartum after my son was born. I heard the whispers.

Just to be clear….I didn’t have it.

I didn’t fit into your world anymore. I would like to say that it evolved slowly over time. But that is not true. It happened all at once.

It happened the day Cooper was born. Before that we were the same. College, wedding preparations, baby preparations. I was you. You were me. We were young. We were blissful.

Then wham. I was different. I had a label. I was an autism parent.I immediately carried it on my shoulders. The weight was more than I could handle at times.

When our children were younger it was one thing. My baby didn’t sleep. Yours did.  He never stopped crying. He was chronically ill with ear infections and constipation. I was tired. I couldn’t speak about anything besides how my child was NOT autistic. I saw how you started to miss me. I saw how I started to slip away. Don’t think I didn’t know it was happening. I was part of every second of it.

But I could pretend then. We would trade stories of other mothers we knew who went through the same thing…and it turned out fine. They were fine. I was going to be fine. This was going to be fine.

You’d find a blog post or a news article and send it my way. We agreed it wasn’t autism.

Then the differences got more noticeable.

My life was suddenly doctors and therapies. I couldn’t relate to you anymore. And you most definitely couldn’t relate to me.

It was like I was in a movie. I watched myself turn invisible right before your eyes.

My child was different. Yours was not. Your child met milestones. Mine didn’t. Your daughter said her first word. Mine didn’t.  Mine screams and hits. Yours does not.

That is the blatant truth. We can dance around it. You can say that you are OK with Cooper. I hear it all the time from friends and family. I know you love him. We all do.

But my son is different than yours.

And I want to say that I am so sorry.

It’s truly not you. You are a wonderful friend. And I love you. But I slipped away and I don’t know how to come back.

I am sorry we don’t come and visit. The preparations for a visit to someones house are epic. Do you have a fence? Do you have WiFi? Do you have other children? Pets? Do you care about messes? The list goes on. Snacks? Sippy cups? Milk? In a sense I still have a newborn. A 60 pound newborn that can do some serious damage.

And I believe it when you say that you love Cooper. You don’t care.

But I do. I care. I care about parenting in front of you. I care that I can’t sit and talk to you because of Cooper. I care that I wake up at 4:15 am. I care that I got poop on your floor while changing my 6 year old.

The truth is….I care friend. We are different now.

You don’t have a label. You are not in my club. You are different.This is why I turn to other ASD parents. They get it. They are my people.

And now my baby is almost 6. We still don’t visit. You still wonder why.  And my friendships and relationsips still suffer. Some of you held on and for that I am so unbelievably thankful. You still text. And call. And some even visit. You force me to do things. To get out of the house. To have a life.

Thank you. If I haven’t said it to your face I want to say it now. Thank you for being my friend. Thank you for showing up.

In the back of my mind I wonder how long you will hang on. When will it be too much?

I know it kills you when I always say no. And even worse when I cancel last minute. I want you to know that I am always tired. Sometimes I can’t even put into words that level of my exhaustion. It’s more than physical. It’s pure mental exhaustion.

I want you to know that I wake up every day happy and with the best of intentions. And by the end of the day sometimes I can’t see straight. It takes all the strength I have to shower and go to bed. That was actually a joke. I rarely shower. It takes all the strength I have to just go to bed. To shut my brain off.

I will go on Facebook and I see that you signing your daughter up for gymnastics.Or maybe it’s t-ball this time. I guess whatever activity a 5 year old does these days. I will see their smiling faces.

I will feel the pain in my stomach. I am over here researching special needs strollers for children. I am trying to figure out how I am going to pay for it. And how I am going to be strong enough to bring it out in public for the first time. How do I find one that won’t stand out. Or make us look too different.

What you are doing isn’t wrong friend. It’s amazing. I am so happy for. Your children are beautiful. You are beautiful.

I’m just not there.

I need you to forgive me.

I know I don’t always answer your texts right away. I rarely check voicemail’s. And I often don’t call back.

I need you to know why.

It’s not you. It’s me. What a cliché right?

I know you don’t know what to say about Cooper. You don’t know what to ask. Or how to help. I feel it too. And that’s OK. There is no right or wrong.

I am letting you off the hook friend. Autism isn’t your world. It is mine.

But you need to know there are other reasons.

There are weekend days when Cooper will whine all day long. It will start at 4 am and go until 9 pm. There is no break. The sounds are so loud. They are nonverbal. They are high pitched. It is more like screaming. It is anxious. It is loud. By the end of the day I am an open nerve.

If you truly know me you know that I always have music on. It’s always playing on my phone. It’s constant. I do it for two reasons.

I can’t take the silence. I can’t take the lack of conversation with my almost 6 year old.  And I can’t take the sounds that are constantly coming out of his mouth.

When the day is over and Cooper is in bed I will stare at him. I will sit by him and wonder how we made it though another day. A day exactly like the one before. And it will be the exact same tomorrow. I will feel more exhausted than I ever thought possible.

I will go in my living room and sit in my chair in silence. I will think about how he is living completely inside his own head. Isolated.

I am isolated too.

His disability has isolated us both.

I sit and enjoy the silence.

I do this because I can’t take one more sound. This is when I should turn to friends. But I can’t. I can’t go out. Because I know it will start all over the next day. And the next.

This is isolation of epic proportions.

I want to thank you for standing by me. And I want to ask you to not give up on me. Your children are going to continue to grow and thrive. There are times where I think Cooper and I will be in the same exact spot. Please remember us.

We are trying so hard to fit into your world. And I love you.

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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 our journey. You can also follow us on Facebook and subscribe to our newsletter.