Buddhist Catholic Contemplative Evangelical General Christian Hindu Jewish Latter-day Saint Muslim New Visions Progressive Christian

Beliefs

Topics

Columnists

Resource Library

Research Tools

Video

Podcasts

Thought Readers

Faith In Media Tracker

Newsletters

Ad-Free & Subscriber Log-In Subscription Support

Follow Patheos

Muslimah Next Door

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

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

Last updated on: April 16, 2015 at 9:02 pm by Dilshad Ali

Ali Family Autism Truths #16 – Siblings Who Roll with It 2015-04-16T21:02:51-04:00 Dilshad Ali

LOGO Patheos Explore the world's faith through different perspectives on religion and spirituality! Patheos has the views of the prevalent religions and spiritualities of the world.

D and his sister, A.

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.

Autism Interlude

#autismtruths

Ali Family Autism Truths

Previous Post

April 15, 2015

Ali Family Autism Truths #15 - Am I Getting it Right?

Next Post

April 17, 2015 Ali Family Autism Truths #17 - Brotherly Love

Browse Our Archives

Select a Category A Global Voice for Autism Autism Awareness Month 2016 Autism Awareness Month 2017 Autism Interlude Hajj and Eid ul Adha Jenin Autism Project Ramadan Three Questions Uncategorized WISE Global Conference

Select a Month November 2018 October 2018 August 2018 June 2018 May 2018 April 2018 March 2018 February 2018 January 2018 December 2017 November 2017 October 2017 September 2017 August 2017 July 2017 June 2017 May 2017 April 2017 March 2017 February 2017 January 2017 December 2016 November 2016 October 2016 September 2016 August 2016 July 2016 June 2016 May 2016 April 2016 March 2016 February 2016 January 2016 December 2015 November 2015 October 2015 September 2015 August 2015 July 2015 June 2015 May 2015 April 2015 March 2015 February 2015 January 2015 December 2014 November 2014 October 2014 September 2014 August 2014 July 2014 June 2014 May 2014 April 2014 March 2014 February 2014 January 2014 December 2013 November 2013 October 2013 September 2013 August 2013 July 2013 June 2013 May 2013 April 2013 March 2013 February 2013 January 2013 December 2012 November 2012 October 2012 September 2012 August 2012 July 2012 June 2012 May 2012 April 2012 March 2012 February 2012 January 2012 December 2011 November 2011 October 2011 September 2011

TAKE THE

Religious Wisdom Quiz

Which Christian denomination places great emphasis on "justification by faith alone"?

Select your answer to see how you score.

Orthodox Methodists Catholics Lutherans