Life With A Side Of Autism

LIFE WITH A SIDE OF AUTISM

Thursday, November 20, 2014

Of Mice And Men And Mermaids: The Challenge Of Special Needs And Siblings



"Mom will you sing 'Morningtown Train' tonight?" she asks as we eat dinner.

"Oh, Boo, you know I can't. That song is too long and David climbs all over me and makes it very hard to finish," I say.

Anna nods, dejectedly.

"How about...'Goodnight, My Someone'?" she asks, hopefully.

"Okay," I relent. "But only the first verse. You two need to get to bed."

I will stand next to the bed and sing. Stand, when I used to sit. I used to hold her long and stroke her hair and sing and sing and sing. We used to sing "Morningtown Train" and we'd lay on the bed and rock like we were on a train, her softly saying "chugga, chugga, chugga" under her breath between the choruses.

And then when it was over, she'd pretend to be asleep, and I'd pull the covers up over her and kiss her and wish her beautiful dreams. But not anymore. Now it's a hasty song, by the side of the bed. I quickly smooth her hair and kiss her cheek, reminding her that I love her. I don't dare touch her longer, or hold her close much or David will attack.

Yes, David will attack.


It's been that way since he was old enough to move. If Anna gets any attention, David must interfere. I hug her, kiss her, wrestle with her, and he runs over, instantly shrieking, pulling hair, slapping, biting, arms and legs flying. Just me, not Daddy. If Anna falls while running and cries out, he's on her in an instant, pre-emptively attacking her because he knows I'm going to come over and comfort her
.
It makes it rough on me. And her. And on him.

No amount of time-outs, talking to, or being forced to give "love" instead of hitting seems to make a difference, either. It's something the developmental psychologist says we will work on, and a behavior that she considers "troubling".

As a side-effect, Anna and I treat snuggling as a hurried thing now, and done furtively, out of his sight. We get a small amount of cuddle time in the evening as I try to put him to bed first, but I can't stretch her bedtime too much later. I even asked her if she wants me to try to put David back in his own bed at night, and her answer was a vehement "no". She doesn't want to see her brother cry any more than I do.

Then there's the rest of the time. Reading to David, playing with David, working, working, working with David.

Anna says, "Mom, can we go to a movie?" and I'll reply, "Oh Boo, I'm sorry. You know we can't take David to a movie, and Daddy's working."

She says "I know," in that disappointed but resigned voice that I so hate to hear.

Later she asks if we can bake something in her Easy-Bake oven. We break it out, but it's hard to do because David keeps running over, determined to get between us. Finally, we put the cookies in to bake, and David is climbing me, holding on with a death-grip, refusing to let me go. So I play with him. Play while Anna sits patiently on the couch, waiting for her turn that might not come. Waiting for her turn that will be hurried and secretive, like I can't be caught giving her a turn.

The cookies burned. They burned because David was pulling the cat's tail again, and I tried to give him a time-out and he threw himself to the floor in a tantrum, pulling at his hair and forcing me to restrain him. I asked her if she wanted to try again. She sighed, looked at her brother and said, "No, it's okay. It's probably too hard to do today."

Dinner passes, and she is chided for not eating her green beans while David is praised for saying "green beans" but not eating them. After dinner, she asks if we can do a puzzle, and we try, but David keeps jumping off Daddy's lap and messing up the puzzle. We finally get it done, but it wasn't a lot of fun to do. Then it's up the stairs for bathtime, where they laugh and splash and we all sing and play. I'm soaked from the armpits down, and it's time to get them out of the tub.

"Mom, can I play by myself for a minute? Please?" she asks.

"Sure, honey. I'll get David out and dressed and you can play a bit longer."

David is diapered, lotioned, dressed, and his hair is combed and neat for exactly 11 seconds till he deliberately messes it up. I put "Finding Nemo" in the DVD player in my room for him to watch for a minute, and I go to check on Anna.

She's under the water, lying on her back, holding her breath. She looks dead.

"Anna!"

"Mom!" She sits up. "Did I look like I was sleeping? I'm a mermaid, and that's how I sleep - under the water."

"You looked great," I say, smiling. "I didn't know you could hold your breath that long."

"I bet there's a lot you don't know about me, huh?"

Oh, baby girl, baby girl. It hurts my heart to say you're right. I used to know everything about you. Every little thing. I don't have time to know anymore. But I do want to. I really do want to.

I get her out of the tub, lotioned, jammied and hair brushed. Then I let her play in my room while I read a book to David and get him settled. The minute I turn out the overhead light and tuck him in, He says, "Anna soon?"

He might not want me loving her, but he loves her. He loves her fiercely.

"Anna soon. Anna's coming soon. I promise. I love you, David."

"I-nitenite-now."

It's all one word, but I cherish every syllable. I return to the room, where I find Anna on her back, supported on her elbows, legs together and in the air.

"Mom, what do you think of my tail?"

"That really does look like a tail!"

"I can make my tail appear and disappear."

"I never knew that about you. That's cool!"

"Yeah," she says, smiling, and as I climb onto the bed, she tucks into my side for a rare few moments of unimpeded mommy-snuggle.

"Anna?"

"Yeah?"

"I think we should tell each other something new about ourselves every single day," I suggest.

"What if I don't have something new every day?"

"Oh, but you do. You learn new stuff or do different stuff every day. You can always say "I read this book" or I found out I don't like green jelly beans" or "I caught everyone when we played tag" or something. What do you say?"

"Okay," she agrees. "Here's mine: 'I love you'".

"That's so nice to hear, Anna - and I know you do. Anything else you want to add?"

"But Mom, you don't know that I love you as deep as the ocean.'Cause I'm a mermaid. And oceans go on forever."

"They do, don't they?"

I hold her close, stroking her hair, just feeling her breathe.

"Mom, what's yours?"

"How about "I love you, too."

She giggles. "Mo-om. I know that."

"Yes, but you don't know that I loved you first," I tell her. "No matter what, you're my first child, and I always loved you first."

She breaks into a radiant smile, the kind that lights up the room and carries my soul for days.

"I'd better get in there before David gets too lonely," she says. "Will you sing 'You are my Sunshine?' That's his favorite."

We head into the room, and I sing, and I tuck and I quickly kiss and I say 'I love you'. As I'm leaving, I hear Anna singing the song again, softly to David.

She finishes, and I hear her say:"David, no matter what, you're my first brother so I loved you first."




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Ellie's journey with her son David has been one of joy, patience and discovery - one that changed the very framework in which she used to view autism. Through David's eyes, she's learned that an autism diagnosis isn't the end of the world - it's just the beginning of an interesting new one.
Available at Amazon for Kindle - and Smashwords for all e-reading device.

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