Reframing

Elias may struggle to stand in someone else's shoes, but he often acts as a sponge absorbing the energy of others.

He may not be able to say how I feel, but he shows me by mirroring my emotions with exaggerated versions of his own. The more stressed I feel, the more he melts down; the more he melts down, the more stressed I feel, until we are caught in our own dysfunctional sink hole of bad behavior.

And it doesnt help that Olive has reached the stage of wanting more than she can say and expressing her frustrations through toddler tantrums that involve screaming, kicking, and throwing herself down on the ground.

I'm not sure which sibling is a worse influence on the other.

But I do know that the ease of Olive's development only magnifies those areas where Elias shows significant delays. And it's not just with his vision, balance, and muscle control (both fine and gross motor), but with his cognition as well. And his social interactions.

Olive will offer to share before Elias. She already says sorry unprompted. Elias has never apologized without being coached first.

Elias doesn't have any friend that aren't the children of our friends, and when asked, "What's a friend?" he dosen't know how to answer. Olive already says night night to her one-month younger neighbor when I hold her in our rocking chair before bed and she tries to walk to Grace's house all on her own.

Olive uses her imagination to play in a way that Elias never has. "What is she doing?" he asks and then tries to copy her but she has already moved on to her next idea. "But she's suppose to..." Elias says, trying to hold his sister to his understanding of her play.

For years, I've been wondering if Elias falls somewhere on the spectrum and time and time again I'd hear, "Not Elias. He doesn't have autism." And I'd doubt and wonder and not want to be the crazy Mama making up diagnoses for her kid.

I knew he used language differently than others, asking me to tell him all the roads I traveled to get to my meeting but not at all interested in the topics discussed. Wanting to know the color of the zamboni or where I sat in the locker room but not at all interested in the score of the hockey game.

But.

Elias loves people. Loves them. And somewhere in my head was the notion that children on the spectrum prefer to be alone. Not Elias. Even if he often stands by himself at recess, he's overly social, apt to sit on a stranger's lap. Invite a passerby over for dinner. And I suppose this lack of inhibition is in itself a sign.

"Elias touches kids too much," a second grade boy told me in the lunch line on Friday.

"Yeah?"

"Yeah, its funny."

And before I could respond, another boy from Elias's class said, "It's not his fault."

And I think that's the pearl I want to keep in my breast pocket upon seeing the words Elias and Autism Spectrum Disorder in print. Its not his fault.

Its not his fault.

And by association, its not mine.

We may act as mirrors but a cord no longer binds us and it is just as crucial to understand how we are seperate as it is to appreciate our connectedness.

His difference matters.

Just as it doesn't.

Comments

[fleming]

so perfectly written Christy that I read it twice. Our connectedness and our seperateness. I feel it so keenly this time of year in general and because we have had a bad month in our house. I can't put my finger on it but I am trying to talk softly and calmly and walk in my kids shoes to try and understand their anger, frustration etc. My expectations for their behavior go up in December just when they should probably go down since the month is busy and our routine is different and I think they feel rushed around too much. ahh. deep breath!

[Kate]

YES! It is a struggle to balance this connection and separation and I am getting caught in these conflict cycles with our oldest child while his easygoing siblings are left out or worse yet taking on his negative traits/behavior. How much of this is temperment or something else I really can't say, but I constantly need to remind myself it is not his fault or mine and that we are both doing the best we can. And I need to reframe him and his behavior in a more positive light. Here's to working on this incredibly hard thing called parenting and not letting the perfect be the enemy of the good.

[Shannon]

So amazing to hear your voice in my head saying what I'm thinking. It really makes me wonder how many of these spectrum flags our little ones with CP share. It is also amazing to see you capture a look I have seen so many times on my own son's face. I can't tell you how many times I have looked at my little guy and said "your behavior caused your sister to cry, you should not be smiling right now." I'll tell you though, my two are the best thing that ever happened to each other. They have learned more from each other than any therapist or teacher could have taught them.

[bec]

Oh, this is it exactly!!! Would it be ok with you if I share this entry with some of the families I work with? I think it's hard in the midst of hearing the diagnosis to see and remember this connectedness and also the real pleasure lots of our kids on the spectrum get from being in the swirl of social life. Thank you so much for putting this out there.

[Shelley]

I see the same with my boys. I find myself being harsh with them for being harsh to each other. Just tonight I had to apologize to my oldest for saying some mean things to him because I was taking his behavior on my own shoulders and feeling badly about it. I find myself often having to reframe my responses so that I am really being the model for my kids. It's hard, hard, hard.

[Christy]

shoot. I just responded to each of your comments individually and somehow lost what I wrote. Too tired to redo.

Bec, Yes, I'd be honored for you to share.

Shelley, Shannon, Kate and Flem, amen. Thanks for letting me know I'm not alone in this struggle. Love "not letting the perfect be the enemy of the good." I need to make that my new mantra. That, and remind myself of all the ways my children are positive influences on each other. That and more...

[Niksmom]

For what it's worth, my Nikolas is also a very social child. He *wants* to be with others and to do what they are doing, but he simply doesn't know how and doesn't understand so much. How do you explain to others that he doesn't understand it's not okay to simply approach strangers on the playground and start clapping their hands for them or trying to kiss them?
This desire for social companionship was one of the biggest barriers we had to finally getting him a diagnosis and the supports he needs.

[danielle in zurich]

That Elias is wearing wings in the sequence above puts it all in a certain crazy perspective...

[Kimberly]

What respite I find in your writing. Just when I feel isolated or simply a failure in my handling, you reveal that our situations are so far beyond us and that we are not the only families that bear this struggle. The dynamic between my 6 year old with mild CP and her 3 year old sibling is very tense. It is difficult for her to struggle with tasks only to watch her sibling eclipse her with ease and joy, creating great frustation. It also generates a grief to witness what Ellianna has missed and lost in the clutches of delay. To see one child mirror a reflection of what was denied to the other and subsequently denied to me as a mother. Then those days, like the lone beam of sun through the overcast, when my jubilation is unparalleled and she overcomes another obstacle. An appreciation reserved for our select. It is hard to accept that we simply can't love away their barriers and struggles. We can't love away a concerned future or love away the torment of our minds. But we can love, we can support. I truly appreciate you sharing your vulnerablility that relieves some burden of families reframing.

[Christy]

Sorry for the delayed response here, I've been sick with either food poisoning or a stomach bug. Nasty stuff.

Niksmom, Elias too wants to be social though he misses so many of the social cues. With his impaired vision its been hard to piece out what is due to that and what is cognition...and yes, sometimes I wish our kids came with explanation signs for the playground.

True Danielle, the wings do add to the scene:)

Kimberly, your comment really spoke to my heart. Especially this line: "To see one child mirror a reflection of what was denied to the other and subsequently denied to me as a mother." There is this piece of Olive's healthy "normal" development that brings me grief as it highlights those areas that Elias is behind-- and even though I always knew he was delayed it was never so visual as it is as I'm watching her grow. Its something I've wanted to write about more and haven't yet so it helps to know that you understand this feeling too. And the sunbeams that melt the pain away, at least for a moment...yes, those too.