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The Constant Turmoil Of Parenting A Child With Special Needs

The constant turmoil of parenting a child with special needs is difficult to describe. But it is real. 

It feels like our lives are totally out of control. And there is nothing I can do about it,” my husband replied.

I looked at my son’s doctor, wondering what she might say. She looked down at her paper and wrote something. I glanced at my husband, and gave him a weak smile.

He’s not used to this,” I thought. “I’m usually the one asking the doctors for help, for information, for education, for guidance…

Finally, the only professionally trained expert in the room responded.

Parenting a child with special needs does create a kind of constant turmoil and vigilance. It’s figuring out how to deal with it that matters.”

My husband looked defeated.

He was hoping she would tell him there was a way to “fix it.”

He was hoping she would say it doesn’t have to be chaotic.

He was hoping for what I think we all have wanted, at one time or another, when we sit across from someone who has expertise in our children’s needs.

A different outcome, a different diagnosis, a different treatment plan – he was hoping for something other than the unfamiliar, painful and messy reality we face every day.

What he got was a reminder – this is our life, and like it or not, it can be totally out of control.

The Constant Turmoil of Parenting a child with special needs


We had a really good day yesterday. My boys were stable and happy. They ate well. We even saw a movie together without any meltdowns over noise or crowds.

It was wonderful, and much needed after airports and presents and Christmas over-stimulation and a lack of routine.

It was by far, the best day we have had in a month.

Until 7:45 PM.

We had decided to watch a little bit of the movie, Homeward Bound. It seemed like a nice, relaxing, before-bed choice for my two animal loving boys.

Then we got to the part where the little girl is lost in the forest, and the dog helps her find her family.

My youngest son panicked.

That would never happen. She would’ve died out there. Turn it off! Turn it off!” he yelled, jumping up from the couch and wildly flailing his arms.

An hour later, he was calm.

But not before what felt like World War Three broke loose in his mind, and in our home.

It came out of nowhere.

One moment, we were happily snuggled on the couch.

The next, my son was banging his head on the wall and crying uncontrollably.

The Constant Turmoil Of Parenting A Child With Special Needs

I went to bed, exhausted and defeated.

I replayed everything I had done or said, as my child lost control. I worried about our decision to hold off on a medication increase. I felt guilty for not being more attentive to my oldest son, lost in the cross fire and silently retreating to his room.

As I was about to drift off to sleep, I thought to myself, “It’s like we live on the San Andreas Fault. We never really know when an earthquake might happen.”

The Constant Vigilance of Parenting a Child With Special Needs

The Constant Turmoil of Parenting a Child with Special Needs

An earthquake is an appropriate analogy I think.

The hypervigilance of living with a dysregulated child means you are always alert and never really sure when the “big one” will hit. The chaos it creates cannot be undone.

Sometimes, the tremors are mild, and we breathe a sigh of relief. Sometimes, they take us out with a destruction that cannot be stopped and must be lived through. But just as true, is the way we learn to cope.

We take each day as it comes.

We don’t worry about the future, as much as we focus on making the best decisions we can every day, in the moment.

We hug a little tighter. We smile a little brighter. We pray a little harder.

We love all the more fiercely.

And we start fresh, rebuilding each day with everything we’ve got.

Keep Reading

Living In Fear When Your Child Has Special Needs


Special Needs Parenting: When Your Husband Doesn’t Get It


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  1. I loved this post! Thank you for writing in words what is swirling around in my head. It’s so healing and helpful to know I’m not alone. I’m clinging to God’s grace because I never navigate it all perfectly and can really get down on myself for that. Yesterday was a really rough day and I’m saying “YES” to everything I’ve read here. Thank you!

  2. Right there with you mama!! I couldn’t have said it better myself : ) Hug to you XOXOXO

  3. Beautifully said! Hadn’t really thought about being hypervigilant before, but yes it fits. Your boys sound so much like my son.

    1. My husband came into my sons life at the age of 2 1/2. Eric was not diagnosed with autism until he was 5. He has alot more patience and is not looking for a quick fix. He takes the time to get on his knees look my son in the eyes and explain what is going on and why he might be in trouble.

  4. The analogy is apt. We are always waiting for the next tremor and praying it will be small. And guys always want to “fix” it! ?

  5. Joanie Bryan says:

    This sounds like my daughters life but she is a amazing mother! Full of patience and love for our Sethy. I know she gets exhausted but she doesn’t show it, she just stays focused and what a wonderful life Seth has with her! She is so patient and kind. Keep all parents with special needs in your prayers please!

  6. This is beautiful and so exactly right-on. The stress and chaos and the earthquakes and hyper vigilance. But the tenacity. And the hope and the hugs and the joy. This is why you bless and encourage me so much. Thank you for the brutal honesty AND the courageous hope. You’re a warrior and you help me feel more strength to warrior on in my own story.

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