I Will Sit With You In The Dark

“When you can’t look on the bright side, I will sit with you in the dark.” Alice in Wonderland

Hearing that your child has autism, or any neurological disorder, is so unbelievably scary. Maybe you knew deep down. Or maybe you were oblivious. It honestly doesn’t matter because in an instant everything is different.

Same kid…different future. Different path. And not just for your kiddo. But for your whole family. For me I felt like a label was tattooed on my son’s forehead. And ultimately mine. I thought the label determined our future. Gosh it was scary.

And to make it even harder, no one in my life understood or knew how to help me.

This is the little boy that I brought into the appointment. Look at him. He is perfect in every way. And yet, every single day was the hardest day of my life. He never slept. He was never content. He didn’t communicate. No matter how hard I tried to reach him and help him, I ultimately failed.

And then we had the piece of paper. The spoken words from the Psychologist. Our child was autistic. At the time, it felt as if my world stopped turning. In an instant my life and future changed forever. Or at least it felt that way.

I immediately wanted to fix everything and do nothing all at once. I felt the weight of his diagnosis on my shoulders and still to this day, almost four years later, it is still securely on my back.

I have a hard time looking back at pictures from when Cooper was three. Which makes me so sad because I have an absolutely loved son. Look at this picture. If you live autism you probably notice that Cooper is in motion. Always in motion. You also most definitely notice that he is pushing away from me.

I have a smile on my face. What you can’t tell is that we were visiting Thomas the Train at a very public event. And I had what appeared to be the only autistic child. The only child who couldn’t stand still. Or sit. Or communicate. Or enjoy himself.

He was consumed by anxiety. He was loud and melting down. We brought in more stares than I can even tell you.

I’m covered in sweat. I am dying inside because we there was no denying that my child was different. My child didn’t speak. He didn’t play. He didn’t sit or even walk. He ran. He screamed. He was full of anxiety.

My child was different. And the world was just too much for him.

I spent days crying after this picture was taken.

This was one of those moments that you hear about. One where autism was no longer just a word. It was a reality.

I’ll never forget this day as long as I live.

What no one tells you is there is a part of the grief process where you just need to sit in it and feel all the feelings.

You are a parent. A parent that loves their child more than words. A parent that is walking a line of hoping the diagnosis is wrong and accepting that this will still be okay.

Remember, you are human. You can be sad. I resented all the people who tried to force me to see the bright side when they didn’t know what I was going through. They wanted to rush me through the grief. And that’s not what I needed.

I needed to think about a unknown future with severe autism. I needed to picture a lifetime of never hearing my child speak. Or playing a game. Joining a team. Making a friend. Or moving out.

And that’s okay.

I had to wrap my brain around the fact that this wasn’t going away. That this was forever. And it was really serious.

We couldn’t hide his autism. We couldn’t run from it. And it was going to change everything.

I want you to think about that for a second. I, just like you, was just a mom. I was pregnant. I did everything right. I prepared. I prayed. And then I was given this perfect little boy that I immediately fell in love with. As I held him in my arms those first few days I did what every mom does. I thought about our beautiful future. The cute conversations, the hugs, the hand holding, the baseball games, the school plays, the choir concerts, and so on.

And then, it was different. My son didn’t do any of those things. I didn’t know if he ever would. Nor could anyone tell me what the future held. I was scared. I felt alone. And I needed a friend more than ever. But not a friend that was going to try and fix it. I needed someone just to sit next to me on the couch, listen to me and let me cry.

What I needed the most was for someone to sit with me in the dark for a while. It’s OK to say that. I wasn’t ready to look on the bright side yet. I wasn’t ready to see how blessed I was.

I just needed to feel all the feelings for a while. And I believe it’s OK to do that because you’ll come out the other side stronger than ever. And ready to advocate for the most amazing, precious human. But for me, I had to go through those sad moments. I had to stop pretending. I had to accept reality.

I had to grieve the life I pictured before I could accept the life that was given to me.

My hope for you is that once you have a diagnosed child, and you’ve made it through, I want you make it your mission to be that person for someone else.

Say it sucks. Say you hate autism. Say you feel robbed and slighted. Say it is hard having a child with an unknown future. Say you feel isolated and alone. And that you don’t know how to be a regular mom anymore. Not that you ever did anyways.

These are the facts that they want to hear. They need to hear them. Don’t sugarcoat it. Don’t lie. Let them cry and be angry.

Sit with them in the dark for a while.

Listen to their angry, confused, lost, heartbroken words.

But most of all, let them say all of their ‘this isn’t fairs.’ Because it’s not and you and I know that. Let them be jealous of all their friends that know nothing of autism. And especially of the friends that have children that are meeting every milestone. You know that sting. There is nothing to describe it.

Let them question everything they did in their pregnancy. Just listen. Even though you know they did nothing wrong, just keep listening. Let them say every single fear out loud because you are probably the only person that will listen and understand.

Let them say that they can’t do this. That they aren’t strong enough. That it shouldn’t be like this. Answer every midnight text and early morning call.

And if they don’t reach out to you, please reach out to them. Because that’s when they are really struggling. Just show up if you have too. Let them shower. Let them nap. Let them cry.

The grief may take days or months. And it may even return when they least expect it. Be there for them. Grief is not linear my friends. You know that.

And then when it’s time, show them the bright side. The beautiful side that emerges after the darkness. Show them the beauty in giving a vulnerable child their best life. The beauty in a child reaching a milestone that they have worked on for months or years. Tell them about the precious little human that they get to protect and celebrate.

Tell them how they get to change the world because they are one of the few that are part of our secret world.

They’ll get there. Just like you did. Just like we all will.

If this post doesn’t make sense to you then you probably don’t have an autistic child. You most likely have never lived it. I want you to know it’s not a question of love or devotion because I, and other parents, have more of that than I can even describe. It’s just scary. It’s hard. And most of all, it’s confusing.

Be kind.

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.

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Comments

  • Clarissa

    November 17, 2017 at 4:32 pm
    Reply

    Well said! My son is 3yrs old and was diagnosed with Autism almost a year ago. He is nonverbal and on the severe side of […] Read MoreWell said! My son is 3yrs old and was diagnosed with Autism almost a year ago. He is nonverbal and on the severe side of the spectrum. Even after almost a year I'm still grieving Autism has affected our family in so many ways. Thank you for your blog it helps me not to feel so alone! Read Less

  • Emily

    November 19, 2017 at 11:21 pm
    Reply

    Thank you for all of your honesty. Your words and videos are amazing. You tell the honest truth about the horrible things that we as […] Read MoreThank you for all of your honesty. Your words and videos are amazing. You tell the honest truth about the horrible things that we as special needs parents go through. The things that most don't have the courage to say. I needed to read this today. Newly diagnosied and dealing with regression. It's hard and you get that. I appreciate all your fantastic written posts. Thank you for your wonderful words of encouragement. Take care. Read Less

  • Carolyn Hoffman

    November 23, 2017 at 1:28 pm
    Reply

    Thank you, thank you, thank you. I felt - and still feel - guilty about my time "in the dark" - afraid to admit it […] Read MoreThank you, thank you, thank you. I felt - and still feel - guilty about my time "in the dark" - afraid to admit it out of fear of it being misinterpreted and judged. Not pushing down the grief and the worry and the sorrow feels ungrateful and disloyal to my son. Hearing you say that it is OK to sit in the dark, and that you - and others - understand, means the world to me today. Read Less

  • Karla

    December 14, 2017 at 6:45 pm
    Reply

    This is wonderful advice and a great blog! I have to constantly live in my own awkward world. It is isolating, nobody seems to get […] Read MoreThis is wonderful advice and a great blog! I have to constantly live in my own awkward world. It is isolating, nobody seems to get my son. Not his peers, and not the parents around me. It is hard. Read Less

  • Lisa

    January 30, 2018 at 1:13 am
    Reply

    Amen sister. I am a mom & surviving right hand "man" to our 5 yr old son with ASD. I struggle each day with silent […] Read MoreAmen sister. I am a mom & surviving right hand "man" to our 5 yr old son with ASD. I struggle each day with silent tears in my sleep. But I want others to know that precious & God appointed gift is truly a blessing full of lessons. Every good & perfect gift comes from above. Embrace each moment for what it truly is. God is in control. Our son has taught me more in 5 years with next to no words then I could have ever learned in all my years of school & life. I am truly humbled by how intelligent & how deliberate our sons actions are. His angelic actions reminds me that there is a God out there. A God who is just a God who truly understands. Others may place a label but I can only define our son as a perfect gift. Just know I agree with much of what you have written. I believe that grief is important however I believethat acceptance is even more important. Be sure to count your blessings every day no matter how small. Just know that every child no matter of ASD or not is unique and should be excepted for who they are not for what they have. Hug them and love them Read Less

  • Shannon

    February 28, 2018 at 5:44 pm
    Reply

    I can't even tell you how much reading this meant to me. Sometimes I feel so alone in this journey. I feel alone in my […] Read MoreI can't even tell you how much reading this meant to me. Sometimes I feel so alone in this journey. I feel alone in my grief even though I know that I'm not. Thank you for being the voice that so many of us need to hear. I'm so grateful that I have found your page, read your trials, and learned from your wisdom. Just....thank you. Read Less

  • Maria Narvaez

    March 4, 2018 at 7:44 am
    Reply

    We are grandparents of the most amazing little boy. Logan, so,so smart. He just got diagnose with some sore of autism. We notice something in […] Read MoreWe are grandparents of the most amazing little boy. Logan, so,so smart. He just got diagnose with some sore of autism. We notice something in him way before the parents did. First they thought that all kids develope different which they do. I have great niece and a great nephew born the same yr. Both of them were speaking two language, playing, eating and asking for food, etc. Not ours. When we mentioned the different they were in denial. We support them 100% my grandson is going to be 4yrs. Old in April 2018. He is really smart, they are taking him to therapy, he is in school, his teacher the first day that met him, wanted to change him from class cause he was too smart for the class he started. He knows his numbers, shapes all type of shapes, all the planets and dwarf planets, colors, months days and he is starting to learn sign language. All i could say to everybody experiencing Autism is that they are really special in their own way.. We are really hopeful in his future, and we are sitting in the dark with all of you. Thank you for sharing your story.. Read Less

  • Jill

    March 22, 2018 at 9:18 am
    Reply

    I want to thank you for your beautiful words. I feel at a loss to describe how much they mean to me. […] Read MoreI want to thank you for your beautiful words. I feel at a loss to describe how much they mean to me. I don't know if you believe in God, but to me what you are doing is following Christ's message in a way that is rare and exemplary. I am praying for you and your family, and I am so grateful for the amazing work you are doing. Read Less

  • Stephanie Epstein

    June 13, 2018 at 9:23 pm
    Reply

    I needed this today. So much. I’m not sure when I’m going to stop crying. But right now it’s the only thing that feels right. […] Read MoreI needed this today. So much. I’m not sure when I’m going to stop crying. But right now it’s the only thing that feels right. Thanks for posting. I may be a stranger, but you made a difference for me today. Read Less

  • Huijin

    July 3, 2018 at 7:51 am
    Reply

    This post made men cry. Such beautiful words Thank you.

  • Fiona

    July 15, 2018 at 7:30 pm
    Reply

    Really enjoy your words, thank you! Camphillspecialschool.org Life changing

  • Rm

    August 14, 2018 at 3:53 pm
    Reply

    loved this post. Written beautifully and reminded me to call my Autism Mom friend back.

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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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When my son was first diagnosed with autism no one was talking about it. Autism was hidden. I vow to change that.
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