Ali Family Autism Truths #16 – Siblings Who Roll with It

April 16, 2015 – Autism Awareness Month, Autism Truths #16

My daughter came home after school today and told me she had changed her mind after talking to her friends. Of course. After talking to her friends.

There is some after-school spring festival happening tomorrow, and I asked her twice earlier in the week if she wanted to go, because a yes answer would require some planning from me — you know, picking the boys up, who would watch them, would I take them all with me, lots of kids, bouncy houses, noise, music, crowds, autism.

You know.

She said no both times, only to come to me today with a changed mind: You know the spring festival? Our teachers talked to us about it today, and my friends said they were going, so I brought the permission slip home. You all can come too. So, can you sign it?

I told her that she should’ve made up her mind earlier in the week when I had asked her, and that now I wasn’t sure. I’d have to check with her dad, because there were many thing to consider with her brothers. Well, you can bring them too. You can bring D bhai, she said.

Yes, I know. But I’m not sure he could handle it. And, it’s too late for me to find someone to hang out with him at home. I wish you had decided earlier in the week when I asked you. I could’ve planned things out, then. We’ll see, I said.

She stomped up the stairs and shut her bedroom door. Hard. She knows. We’ll see often means, probably not, kiddo.

I knew the best course of action was to stay quiet. She would come around on her own. And sure enough, in about 15 minutes, she came downstairs and announced she had brushed her teeth and was ready for her dentist appointment. And as of this point in the evening, while I write this post, she still hasn’t mentioned it to me again.

Our 11-year-old daughter “A” has known no other world, no other family dynamic other than the autism one she was born into. I’ve never said this to her, and one day she may read this, but I’ve always regretted the lack of attention she got from me her first year of life. Her birth and D’s autism diagnosis happened in the same month. I knew what was coming with him. The whole year before he turned three, when he was in early intervention, was a lead-up to this moment. The diagnosis confirmed my suspicions for the rest of the family.

We sat in the office of the behavior developmental pediatrician, after she had evaluated D — me, my husband, my mother-in-law, D and baby A, barely a month old — snoozing in her car seat. The words were confusing to me, and I couldn’t understand what she was saying. What was this ABA she was recommending? If we did it, would D be ok? Would he start talking? Was getting him into the right autism program in school going to fix things? What do you mean talk to other parents? I didn’t want a stinking support group. I wanted it all to go away.

In the middle of it all, A cried, as babies are wont to do when they are hungry. I nursed her and handed her over to her grandmother. That’s how much of her first year went. I nursed her, held her, changed her diaper and bathed her. I made homemade rice and vegetable purees to feed her, cuddled her softness to my chest and bounced her in her chair. But D’s autism had claimed me. That first year of A’s life was spent with me weeping, worrying, resolving to try everything, researching, reading, running around New York City, consulting with people, taking him to doctors and a little bit of praying. A lot of weeping. I’m surprised the depth of my worry and sorrow didn’t permeate her being as she nursed from my breast and felt the warmth of my tears drop on her downy head. It could’ve been some scene out of Like Water for Chocolate. But no – she was happy.

Alhamdullilah.

A was a beautiful baby. My best baby. She slept well, ate well, didn’t fuss much and was very smiley. She was all sweetness and soft curves — truly a baby anyone would want to croon over. She deserved better from me. She’ll never hold that first year against me, I know. She doesn’t remember it. But I do. I wish I had enjoyed that first year with her, truly enjoyed it. Given her every attention she deserved. Appreciated every sweet, silly, happy and wonderful thing she did. Sometimes I feel everything she did was held up against everything D didn’t do. Her first word, when she first said “Mamma,” when she first pointed, when she repeated our words, when she started making verbal requests. And on, and on and on.

God gave me a gift when He granted me A. Truly. A gift. He granted me a gift with D and later on, H, too. But A — my darling girl came to me at a time when I was broken and confused, not knowing what to do, questioning my motherhood. She meshed herself into our family dynamic from the get go and lifted me up. She has only known D as he is – her awesome older brother who has autism. And everything we’ve done for her and her brothers — every activity, every decision, every choice– it’s all been influenced by what D can and cannot manage with his autism. She feels the unfairness of it. But more so, she rolls with it.

The truth is that our family doesn’t work without A , H or D. We need all three. She may not have an older brother who looks out for her, but she has an older brother who loves her unconditionally, unabashedly. His life is made better with her being in it. I dare say she thinks the same about him.

From something I wrote on Facebook months earlier:

There’s a scene in Love, Actually when Laura Linney’s character is called by the staff and has to go visit her special needs brother in the group home where he lives. He raises a hand to her, but when she grabs his hand and says, “Don’t babe,” he realizes his mistake and hugs her. His affection for her is palpable. She is his best friend, and she always comes to him, though he may try and be rough with her.

It’s a scene that always makes me cry and think of things I so admire between my dears, D and his sister A, and things I don’t want to see happen between them.

A has taken a lot from D over the years — but she remains fierce in her love for him. Their relationship is a work in progress. She is his first friend, his best friend. His love for her is palpable, as is his love for H.

So this one goes out to all the rock-star siblings, who we parents are hoping will always look out for and be supportive of their siblings with special needs in whatever ways matter.