For Those Sitting In the Darkness of Autism – There Is Light On The Other Side

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There was a time when our family of 3 was sinking, grasping at anything we could to stay afloat.

Our daughter was too panicked to leave the house. Forcing her to do so would end up in someone getting hurt.

So instead we stayed home.

While at home, she would turn off all lights because they bothered her sensory system. If we tried to turn them back on she would cry, run to turn them off again, and the vicious challenge to keep them on sucked up our air.

So, we literally learned to live in the dark.

Periodically, we’d hear screaming and crying, and have no idea what triggered it.

Besides the screaming, there were regular instances when, for no reason that we could discern, she’d pull her own hair, rip her clothes, and swing at things, such as the chandelier, so hard that wires stuck out of our ceiling.

That chandelier was one of many items that needed to be replaced, because her tidal waves of anxiety could not be curtailed.

Meanwhile, sleepless nights were our norm, and exhaustion contributed to our family’s misery.

Every recommended behavior intervention we tried made the situation worse, causing her already heightened anxiety to increase.

Then, the involuntary behaviors would intensify, and the vicious cycle grew more fierce.

Autism had taken over our life.

Our precious daughter was suffering, not only with autism and extreme anxiety, but with a case of severe Crohn’s (an autoimmune disease) that caused inflammation in her body. All of this put the hardest parts of autism on full blast, taking our family down a speeding spiral.

During brief instances when I was able to come up for air, I read some beautiful essays about special needs parenting, as well as all the joys and gifts of autism.

It seemed everywhere I turned, I read about various kids on the autism spectrum joining the basketball team, singing the national anthem for large crowds, going to prom.

But our family, well, we were still hanging on for dear life.

One remarkable, exquisite and touching piece compared having a special needs child to going on a pleasant trip to Holland, noting that it wasn’t the wonderful Italy trip planned, but was lovely nonetheless.

I remember showing the essay to my husband and saying,

“I’m happy that she and many others made it to Holland or some other joyful place, but we’re here in the desert storm, and I can’t relate to the Holland comparison right now!”

My usually upbeat husband understood exactly what I was saying, and agreed.

To be clear, there was never a lack of love. In fact, our family was overflowing with it.

This abundance of love added to the excruciating pain of watching our daughter suffer. She was consumed with anxiety; miserable, scared and had lost control of her own body.

Years later, that sinking ship we were once on has been revived.

Her Crohn’s disease is under control; her anxiety has stabilized; she’s now able to communicate effectively; she’s more in control of her body, and she’s able to share her charm and incredible personality.

I remember the first time after a long stretch of darkness that our daughter asked to go out. 

We went to a large restaurant where we could find a corner table and a lot of space; we had a calm dinner, filled with laughter and she smiled practically the entire time. That was the beginning of her enjoying being out, enjoying the world again.

That marked our reentry to a place of beauty.

While there are still some moments or days that come along and knock the wind out of our sails, generally, light still shines through.

Surprisingly, I’ve now become one of those moms who writes about the many wondrous moments that can happen alongside autism.

I share because I want to give hope to those who are in the midst of the most difficult challenges.

Autism comes in countless packages at various times: some families may mostly experience the gifts and happiness that can accompany autism.

Some may, at any given phase, experience a grueling, muddy, painful road. Many are anywhere in between. Often the journeys change. There is no recipe.

Autism is all over the place and cannot fit into any one box.

I want to reach those who are battling to stay afloat; to support them as they hang on, as tightly as they can; to help them never, ever give up.

I cannot say I’m thankful we experienced those awful hardships in the past. Or that we don’t still experience some difficult minutes, hours, days….

I will say though, that reaching light after a long trek through a treacherous tunnel is absolutely possible. It’s beautiful and breathtaking.

I’m grateful for the light we have found. Our daughter is grateful for it, too. She actually told us that. 

For anyone who is in the trenches and cannot yet see that light, I’ll listen, sit with you, and hold your hand through the dark. The darkest times are soul crushing. I know.

If you are at a place in which you can hold on to hope, I’ll gladly share our story of being swept into the dark tsunami and coming out to see not only the light, but radiance.

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Linda's daughter, Danielle, has a Youtube channel, which you can find at: "Reaching Danielle's Voice". Linda is a consultant and writer who holds a Masters Degree in Social Work from University of Southern California. Linda’s articles have been featured in various magazines and sites including Autism Parenting Magazine, Finding Cooper’s Voice, Bethesda Magazine, and Friendship Circle. Linda lives in Bethesda, Maryland with her husband and beautiful 18-year-old daughter who has autism and Crohn’s disease. She continues her passion of advocating for her daughter and others with special needs, through writing and speaking engagements.

6 COMMENTS

  1. That was beautiful! Linda u speak so well & explain everything so well!
    We love u, Michael & Danielle so very much! ???

  2. Hi! Your story is so inspiring! We have a son who is three and just recently diagnosed with Autism! Finally being able to get the diagnosis was a relief. Because as a mother we already knew there was something quiet not right. And finally it took someone with a degree to give him what I feel like is a label! He has other sensory issues as well as global developmental delay of a six month old. My family and I can so relate to these dark days you talk about. The screaming, the tantrums, because he is completely non verbal as well. We have learned what some of chirps amd wants are but it’s still sometimes leaves us in the dark! We have a hard time going anywhere such as stores where crowds are, out to eat snd more. He has separation anxiety and is very attached to me and his sister. He will scream and stuff while we are in resteraunts and others just stare snd point fingers and more. Adjusting was hard at first and made me cry because he is my special little boy. I know there is light at the end of this tunnel and I’m so thankful god put him in my life. I am thankful for your story and your sharing I needed this.

    • Thank you! I’m so glad you found some comfort in this piece. I understand those challenges, as well as the immense love you describe. You will find light. Absolutely amazing things happen, and I look forward to hearing about them. You are not alone: In fact there are some wonderful support groups you might want to look into. Specifically, Coops Troop is full of caring and loving parents like you.

  3. Linda,
    The love and support you and Michael have given Danielle has made her the person who she is today. She is so lucky to have you as parents. Danielle is a gift of love. She is strong, beautiful, and her acts of kindness can brighten anyones day. I love her attitude and her mantra “be grateful for the light you have found”
    ??Love You??

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