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What Autism Can’t Take Away From Us – Our Kids

What Autism Can’t Take Away From Us – Our Kids

Last updated on: August 14, 2012 at 11:26 am by Dilshad Ali

What Autism Can’t Take Away From Us – Our Kids 2012-08-14T11:26:16-04:00 Dilshad Ali

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“What do you want for Eid, Mamma?”

My daughter posed this question to me this morning as I drove her to her art camp. For once, we were alone in the car, with Lil D having gone to summer school an hour earlier and Hamza having been dropped at his summer camp by his father. Amal and I were enjoying a good mom-daughter conversation, and I was taking the opportunity to tell her how proud I was of her endeavors this Ramadan and her patience with her brothers, grandparents and us.

I often discuss Amal’s position in the family with my husband. Being our only daughter and middle child, she gets pulled in many directions. Lil D, with the severity of his autism, lives by a different set of rules. Of course, we try our best to set the same basic expectations for all kids – talk nice to each other, respect your elders, no hitting, clean up after yourselves, and so on. But in all honesty, some expectations for Amal versus Lil D versus Hamza are different for a number of factors: Autism, age, capabilities, position in the family.

Amal is a smart, compassionate, loving, helpful, dramatic child who wears her heart on her sleeve. She feels the injustice of her situation from time to time, and I don’t blame her. Though Lil D has rules to follow and chores to do, there are many more things asked of Amal, from keeping up with her homework (during the school year) to her daily Quran reading, to chores around the house, to helping her grandparents with little tasks. At age four (nearly five), Hamza has rules and things he must do as well. But, as the youngest, he does get away with stuff. And, he milks the “baby of the family” mantle for all its worth.

So, from time to time, there’s some “You all love Hamza and not me!” or, “No one asks Bhai (Lil D) or Hamza to do things, no one stops them – you all pick on me,” coming from Amal. While this is not entirely true, her feelings are justified. I know that as Hamza grows older, the expectations and responsibilities put on him will grow, and things will even out a bit with his sister. But try explaining that to a precocious-but-still-childish nine-year-old.

Some days she gets it, some days she doesn’t. So, I feel for her.

We try hard, husband and me, to treat the kids equally. But, it doesn’t play out like that in the day-to-day messy details, responsibilities, duties and activities of life. Some days the cards are in favor of Amal, some days Hamza, some days it’s all about Lil D. Other days we manage to get the stars aligned give each kid what they need.

Last winter, spring and early part of summer, when Lil D was going through his “Dark Months” of self-injurious behaviors, medical issues, school crises, hospital and doctor visits and general horribleness, the other kids soldiered on. To their testament (and ours) of God-given strength and fortitude, their lives continued on as best as possible. Hamza went through the private school kindergarten application process and got into a good school, where he’ll be starting this fall. Amal studied hard (with help from her father and me), got good grades, scored well on her state-level tests, and was accepted into the gifted program for this fall. Both kids played spring soccer. Amal continued to read the Quran and get into the habit of her five daily prayers. Hamza began learning the Arabic alphabet and how to make salat. Play dates were had. Cartoons were watched. Friendships developed.

I reveal these good bits of news with hesitation – not to brag about how good my children are, but in admiration of how well these two little rugrats of mine soldiered on through one of the toughest times we’ve endured with Lil D. They, especially Amal, felt pain and sorrow over what was happening (she is a tender soul, my daughter), but they kept on with their lives – with support and love from us and their grandparents.

And so, as we near the end of Ramadan, and the new school year is about to begin (and already has begun for Lil D), I am blown away by these kids of mine. All those nights I simultaneously beseeched and raged against Allah for what Lil D and we all were enduring, begging for answers, praying for peace and happiness for him, praying for me to be a better parent to my other kids, praying for the sanity of my husband and myself, praying to be Shown The Way – and here I sit today.

Not writing about Ramadan Despair, as I did last year, but writing about Ramadan Blessings. So thankful that we have figured out some of Lil D’s problems and have other things to investigate. Still praying for peace and happiness for Lil D and all of us, for good health, to continue to be Shown The Way; giving thanks for the people who come have into my life as a result our search for answers for Lil D this past year.

And, praying that we will be able to endure and pull through when this all happens again. Because it will. That is life with autism, Lil D, Amal and Hamza — up, down, way down, way, way down, clawing back up.

“What do you want for Eid, Mamma?” – My daughter asked me today.

I already got what I wanted, baby.

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