On being on the outside

by arianne

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He insists on sitting by me but he won’t hold my hand. He won’t really touch me. But he will scream if I move too far away. He can’t tolerate a single change in routine or plans or rules or promises. He acts like his whole world exploded when he feels left out, and he often says no one likes him. He calls himself stupid when he has a consequence for his poor behavior, and I try and scoop him up to tell him those are lies, that I love him and sometimes we all make mistakes, but he won’t let me scoop him up. He holds me on the outside of his heart. Always.

He battles getting dressed, and most days I pick my battles and then it’s another underroos kinda day. But each day that goes by with yet another battle over a shirt I just have to wonder if things are really worse than they seem.

When I can get him to look me in the eye, for just a moment is how long it normally lasts, I realize he isn’t exactly there. I miss him. The real him is locked inside there somewhere. He has had long seasons of being “here” and I know what those felt like. They haunt me a bit today. The piece of him I know is possible.

We’re having a battle right now, weathering this storm that is 5.5 years old and on the spectrum and yet high functioning enough to not require professional help. It’s like hey, yeah this is what is going on with your child, but there are much worse kids so yeah – you’re on your own! Good luck and God speed, because you’re going to need it.

I think the only time he will sit and have a conversation with me lately is if I play video games with him. I limit him with those, big time, so the actual conversations are few and far between. We’re back to feeling like we can’t take him in public (though we must) and we’re back to being really worried.

I feel like I want to share this and then at the same time I don’t want to voice any of it. We thought he was getting so much better, and he was for a time, but now it’s regression again. And it hurts.

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{ 10 comments… read them below or add one }

the Blah Blah Blahger October 9, 2012 at 4:45 pm

Oh, mama…BIG HUGS as you navigate these waters!!!

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Arianne October 16, 2012 at 2:49 pm

Thank you darling. xoxo

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tara pohlkotte October 9, 2012 at 5:46 pm

oh, my heart aches for you as you try to find your way into his world while you navigate him through yours. these mama roads are full of roots, dips, and rocks that throw us off course. i know you are fighting hard to find him even while you work through frustration and hurt of watching him retreat. love to you all.

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Amy w October 9, 2012 at 5:47 pm

I actually cried. I am struggling with my three year old who is highly sensitive. It is hard to take him out to the playground or to playgroups. We lead an isolated life many days. Hold on mama, hold on.

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Linda October 9, 2012 at 6:09 pm

Arianne, I’m sure I don’t know a fraction of what it’s like to have a child with autism, but one of my boys has various behavioral issues we struggle with, leaving me worried and wondering about the future at times.

Here’s a poem I wrote about those feelings:

::::::::::::::::::::

You rise everyday your light shining
Warmth to my soul
Storm clouds may cover
You ache to be seen

Seasons affect our perception
Blankets to cover or shade
Your light so strong
Created by God to shine

Even if by clouds you hide
I will see you
Everyday
I will see you

In any place you go
And know you’re shining
And love you always
Shine on you’re needed

My boy
My son

:::::::::::::

Praying for your boy and your family. xo

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Amber@theRunaMuck October 9, 2012 at 6:23 pm

Well, babe, you know I could have written this myself.

I love you. Even this is a season. I know you know that. I’m sorry your heart hurts.

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heather October 9, 2012 at 6:42 pm

Ari, you are on the outside and not, maybe. Maybe both. His heart is made of you and so even if he doesn’t know it sometimes, you’re in there. That’s because your two hearts are connected like with twine, and he’s so much in yours and it ripples back and forth.

I’m sorry. I love you.

xoxo

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Nicole Cottrell October 9, 2012 at 8:15 pm

I’m so glad Jonah has you as his momma and Jacob as his daddy. God knew what He was doing. And while I know it might not feel like it at times, you two are the perfect people to raise, love, encourage, cry with, and hold this sweet boy.

Praying, my friend, for more of him to make his appearance, for him to connect and stay connected, for hugs and snuggles, and grace upon grace for the days when those things seem impossible. Love you.

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Megan at SortaCrunchy October 10, 2012 at 10:31 am

What a heart-breaking glimpse into this season of family life. Thank you for sharing it with such honesty. I pray there are more moments of joy and hands grasping yours instead of pushing away – so many more moments of hope.

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Kelly @ Love Well October 10, 2012 at 8:51 pm

I love your authenticity, Ari. I just flat-out love you.

I will pray for you and your sweet boy, that you both find a way back to the inside, that doors open a bit every day.

Sending you so much love.

Reply

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