Autism | Sensory Processing Disorder

Learning To Embrace God’s Design For My Children

He really, really wanted to see that stinky flower.

For months, he had walked by the “titan arum” at the gardens and told me all about it. How it’s like a once in a lifetime thing to actually see it bloom, how rare of an experience it would be, how it actually smells like rotting meat, how scientists are studying it to learn more about how it can be so erratic in its behavior. Months.

So when the garden’s Facebook page posted a picture and said it was actually in bloom for the first time in years, he was excited. He was more than excited, he was practically manic.

I asked him, “Are you sure you want to actually smell it? It sounds kinda rough.” He scoffed at me and said, “It’s a once in a life time thing, Mommy. Of course I do!

The gardens offered a special viewing, in the evening, when it was cooler –  it sounded like our best shot.

He was singing in the car on the way. So unusual. So welcome. So happy.

We entered the gate and he was skipping. But then, he stopped short. He started shaking his head and saying, “No. Just no.”

I looked ahead and saw the line that had formed to see the flower.

At least 45 people long.

Outside.

In the sun.

With an air conditioning unit banging in the background.

My husband tensed up. His brother tensed up. My heart sank.

They said the line is moving very quickly, honey. No more than 20 minutes. Let’s just try.

To his credit, he got in line, but all of his coping mechanisms were failing. The murmur of the conversations of the people around us, that air conditioner, his brother saying over and over again, “I’ll wait. I really want to see it!“, the heat, having to stand.

He. Was. Done.

Learning To Embrace God's Design For My Children

My husband took him to the car, trying to calm him down, thinking maybe I could just text when we got close and he could make it in.

I texted as we came up to the door. My husband texted back, “No way is it happening.”

My eyes welled with tears. I quickly swallowed them down, and just tried to focus on my youngest, and having a sweet time with him. And it was. He was impressed. He used my phone to take all kinds of pictures. He even listened to the lady who worked there talk about the science behind this rare flower. And the smell was honestly no worse than our garbage can on some days – so you, know, it was yucky but tolerable.

"Titan Arum" or as I call it, "Stinky Flower". Photo Cred - Bacon.
“Titan Arum” or as I call it, “Stinky Flower”. Photo Credit – my eight year old

Learning to Embrace God’s Design For My Children

That night, after the kids were in bed, I told my husband how sorry I felt for my son.

HE wanted this. He was the reason we went in the first place. This was his deal, and he just couldn’t do it.

I tried to be encouraged that he knew his boundaries – that he didn’t have a full on public meltdown. That’s progress right?

But in that moment, I just wanted to tell autism to get out. To go away . To leave my son alone and let him be. Let him live. Let him rejoice in the things he loves.

I prayed for wisdom before I closed my eyes to the night’s fitful sleep.

Learning To Embrace God's Design For My Children (1)

The next morning, my son woke up and called for me. I went into his room and he immediately started telling me all the things about his newest interest, the chinchilla. His eyes were lit up with excitement and enthusiasm. He hugged me, and made tons of eye contact, and kept telling me he loved me in between chinchilla facts.

It hit me then, in the room with lycra sheets and too many pets, that this is who he is.

I believe it, but the truth is, I still fight it – all the time.

He is who he is because of this special brain chemistry. It’s amazing and it’s rigid and it’s so freaking smart, and it’s all him.

I can’t wish that away anymore than I could wish away any other element of God’s design in any of us.

I will be very honest here and say it – Autism makes me crazy and angry and sad and frustrated and confused.

It makes me all of these things, but it makes him who he is.

And I would never want anything less.


This post originally appeared on Not The Former Things in 2014. 

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9 Comments

  1. My daughter has DiGeorge Syndrome, I can relate to your frustrations. There are days that I absolutely HATE some of the things that she has to deal with but, like you, I understand that this genetic syndrome is literally part of who she is. It can definitely cause for difficult times and makes life a bit more “messy” sometimes but there is beauty in their differences and the way that they see the world. I love how you said it… “Learning to embrace God’s Design for my children” Thanks for sharing!

    1. Hi Rachael! You are most welcome. I deliberately chose the word “embrace” – there is a bog difference between accepting something and embracing it (I am learning the hard way!).
      Thank you so much for sharing your experience and for your sweet words.
      Praying for you and your girl right this minute.
      Love,
      Shawna

  2. Wow, just wow! I am so thankful that you shared these words, and that your post randomly appeared on my Facebook feed. I needed to read this. Through the pain, uncertainty and downright desperation (at times) it’s so comforting to be reminded of God’s design in my unique children. Thank you!

    1. Thank you so much for your sweet words, Megan. I am glad you are here and I am praying for you and yours this morning.
      Love,
      Shawna

  3. Do you have any articles on homeschooling for parents who work? My husband wants to take my 13 1/2 years old stepson out of school. But..my husband is beginning a new career as a real estate agent. I told him it was a bad idea simply because they need constant help and he will not learn anything if he isnt here.
    Any advice would be appreciated.

  4. Thank you for those wise words. Whew, I needed that! I’m trying to listen to God and where He’s working in my son’s life and join Him there. I’ve been trying to instill a good work ethic and making us all miserable in the process. I felt God whisper to me to pray my son will embrace wonder and so that’s where we are today.

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