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30 Ali Family Autism Truths for Autism Awareness Month – the Second Ten

30 Ali Family Autism Truths for Autism Awareness Month – the Second Ten

Last updated on: April 25, 2014 at 11:12 am by Dilshad Ali

30 Ali Family Autism Truths for Autism Awareness Month – the Second Ten 2014-04-25T11:12:04-04:00 Dilshad Ali

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When we fast in the holy month of Ramadan, our family has a saying — the first 10 are easy. You fast with full spiritual joy and intensity, ready to really experience Ramadan. The second ten fasts are the hard ones. You start to grow weary in body, mind and soul. Keeping up spiritual and faith practices grow hard during the second ten days. And then in the last ten days you feel a renewed exuberance. You are ready to recommit to your Ramadan goals, to push through to the end.

The second set of ten “Ali Family Autism Truths” Facebook status updates felt more like the middle ten fasts of Ramadan to me. I grew a bit tired of sharing, of opening up myself and my family about the truths of our autism lives. Raw honesty takes a toll on you after while. But that’s what autism living is — real, raw, honest and ongoing. And so I will push through to the end. For you, for Lil D, for all of us. Because April is Autism Awareness Month. And as much as individuals with autism and those in the autism community feel that we are waaaaaaay beyond awareness and must be focused on action, there is still so much people don’t know or understand. For those who do not directly know someone with autism, they are still so unaware.

So, I am focusing on my family’s autism truths. Hard-fought and hard-learned truths. I don’t normally do “30 days of something” or a “year of something.” I have trouble being consistent with anything outside of the routine of my kids and prayer and fasting. But I’m doing this for April — Autism Awareness Month (which should really be Autism Awareness, Action and Acceptance Month). Thirty Days of Ali Family Autism Truths, written as status updates on Facebook — not reflecting all autism families or individuals with autism, because autism indeed is a spectrum — but truths from our life. There are beautiful truths, there are hard truths. They are all our truths.

Click here for the first ten.

Here are the second set of ten – days 11 through 20.

April 11, 2014: Ali Family Autism Truths #11

To hear Lil D search his mind for what he wants to say or ask, be it one word or a phrase we’ve been prompting him to say for years, and then say exactly what he wanted to say – well it never gets old for me. It is a Herculean task for him to initiate verbal language, so every hard-fought for word is cherished like a rare and precious gem stone.

Today at my sister-in-law’s, I was praying Asr and Lil D was rough housing with his favorite cousin, Big K. I couldn’t focus on the prayer bc I was listening to Lil D say “Aw done,” then, “ticka ma” (tickle me), then, “More!” to his cousin — phrases we’ve been prompting him to say for years.

The sweetest sounds on God’s green earth.

April 12, 2014 – Ali Family Autism Truths #12

As Lil D gets older, I struggle with finding places to take him for fun. He still likes going to parks, but they are frequented by a younger crowd. We went to a park today that we’ve been going to for years, and he had some minor vocal escalations, then got happy and had a good time. Both sides of him elicited lots of stares.

And I’m not surprised or upset. He is a big kid to be at a playground. It just makes me think of the growing autism population. As much as everyone is doing to make the world accepting and better for those with special needs, it’s a whole other ball game with those more severely affected.

‪#‎Autism
‪#‎AutismTruths
‪#‎LilDForTheWin
‪#‎WhenWillThereBePlaygroundsForBiggerKidsInMyCommunity

April 13, 2014: Ali Family Autism Truths #13

With Baba and Daughter gone on an epic spring break trip and the grandparents out of town as well, this is the first time we’ve enjoyed this family dynamic: as Hamza has been proudly saying to me – YOU, ME (long pause) and Lil D! He had big plans for us, but I explained to his six-year-old mind what we could and couldn’t do because of what I could and couldn’t manage with Lil D, and because he was still too small to help and support Lil D the way his big sister does.

That’s when he decided to prove me wrong.

On various occasions this weekend I’ve found Hamza singing to Lil D (it makes him feel happier, he explained to me), running upstairs to fetch things for his brother (he’s usually a little afraid to go upstairs or downstairs alone) and coming with me to do the goodnight routine with Lil D, reciting prayers with me over his big brother.

When we had two young friends over to play and the younger friend was afraid of Lil D in all his large and unencumbered exuberance, Hamza went and roughed housed with his big bro, telling his friend – it’s ok. He just likes to play and wrestle!

Hamza – stepping up BigTime this weekend. Indeed my youngest son, it IS You, Me and Lil D.

‪#‎Autism
‪#‎AutismTruths
‪#‎LilDForTheWin
‪#‎IAmTheMotherOfTwoAwesomeSonsWhoAreWatchingDespicableWithMeRightNow

April 14, 2014: Ali Family Autism Truths #14

It’s been a long day. Day three of spring break and Lil D’s not feeling it. I think he’s getting sick. I am reading his signs and making my best mom educated guess. You know, because he’s never been able to tell me or show me on his iPad if his throat hurts, or if he has a headache or body ache. Or if his eyes ache. Ever.

Yeah, so I got nothing beyond that. Because that is enough of a painful truth.

‪#‎Autism
‪#‎AutismTruths
‪#‎LilDForTheWin
‪#‎NoOneShouldBeSickOverSpringBreak

April 15, 2014: Ali Family Autism Truths #15

He neither does the five daily prayers or fasts in Ramadan. I suspect (but don’t know for sure) that he’ll never give zakaat (annual charity) or perform the Hajj. All the million things we debate each other about and question scholars about and argue over, all the back and forth and finger wagging over what makes a Muslim a Muslim, what Islam says or doesn’t say about this or that …

And none of it matters for him. He is the best Muslim, the best human, the most pure person you’ll ever know. Better then me, you and the rest of dunya. In my humble opinion, he is the truth. Maybe that’s God’s autism plan. But I have such trouble seeing it.

‪#‎Autism
‪#‎AutismTruths
‪#‎LilDForTheWin
‪#‎TheBestLaidPlansYaddaYaddaYadda

April 16, 2014: Ali Family Autism Truths #16

As roller-coasterish as this ride is, as much as we want things to be better for Lil D, as much as there have been tears and times of despair and frustration when Lil D is hurting or confused or anxiety-ridden or wanting to convey something and we are getting it wrong or can’t understand or don’t know what to do to help …

We are happy. Maybe not all the time, but we are. Because one of the best pieces of advise we received when Lil D was diagnosed was to keep happiness a priority – for Lil D, for all our children and for ourselves. So we get up each morning and try again. Because his happiness and the happiness of all our children is important.

‪#‎Autism
‪#‎AutismTruths
‪#‎LilDForTheWin
‪#‎PeaceAndHappinessIsWhatHeAndAllOfUsDeserve

April 17, 2014: Ali Family Autism Truths #17

If there is one thing Lil D and his autism has taught us, it’s that the smallest moments or the simple pleasures in life, which others may take for granted, are things to really cherish and be thankful for.

Today we — my sister in law and I — took all 8 of our kids to a local huge park with walking paths and different gardens. Our home therapist came with us for the first hour to help Lil D, but then had to leave. We ended up staying nearly three hours more, walking the paths, jumping streams, rolling down hills and climbing trees. Lil D rolled with the punches and stayed with us every step of the way. It’s been ages since I’ve enjoyed an afternoon like that with all of my kids – no dividing and conquering, no cutting the outing short because Lil D wasn’t feeling it.

Such a small, simple afternoon. But so so meaningful to me, to all of us. Alhamdullilah.

‪#‎Autism
‪#‎AutismTruths
‪#‎LilDForTheWin
‪#‎AllOfUsForTheWin

April 18, 2014, Ali Family Autism Truths #18

You’d think that the sleep issues would end when your child transitioned from baby to toddler. Wrong. For so many with autism, like Lil D, falling asleep naturally and sleeping through the night is a lifelong struggle. Which makes it a struggle for us (the parents) as well.

‪#‎Autism
‪#‎AutismTruths
‪#‎LilDForTheWin
‪#‎WhatDoWeHaveToDoToGetSomeZzzzzsAroundHere?

April 19, 2014: Ali Family Autism Truths #19

Took our other kids to an amusement park today with my sister in law and her kids. Everyone had a great time, and I enjoyed my “break.” Lil D stayed home with his dad and grandparents. I took him alone to an amusement park last week and he hated it. Was miserable and saying “aw dun” within an hour of getting there. So I knew today he would be more at ease staying home.

Today reminded me once again that while I or others in our family go out or away at times and get a “break” from the constant care and support Lil D needs, he never gets a break from himself. His autism is an intrinsic part of him all the time – always that square peg trying to fit himself into the round parameters of this world. And there are no breaks from that, especially the hard parts.

‪#‎Autism
‪#‎AutismTruths
‪#‎LilDForTheWin
‪#‎DontTellMeIDeserveABreakBecauseImWaitingForHimtoGetOne

April 20, 2014: Ali Family Autism Truths #20

We made it through Spring break and a routine-less shake-up for Lil D. It’s funny (not really) how these breaks, which are eagerly anticipated by our other kids, are especially challenging for Lil D. He is a kid who generally likes school, and so to be out is not so enjoyable for him.

And so I took it one day at a time with him. We tried swimming one day, and that went well. Other activities fared worse. He spent a lot of time hanging in his favorite lazy-boy recliner, or for pockets of time outside on the swings or trampoline. The highlight was a glorious outing to the park with his cousins.

Yep, no big trips, no stay cation mini outings. We just rode the days out in search of peace and calm and a smidgen of fun. And, We made it through relatively intact. Sometimes that’s the best we can do.

Hope you enjoyed your spring break.

‪#‎Autism
‪#‎AutismTruths
‪#‎LilDForTheWin
‪#‎HallelujahSchoolIsStartingAgainYeahISaidIt

Click here for the first 10. The last 10 will be compiled in a blog post on the first of May, Insha’Allah.

Autism Awareness Month. Ali Family Autism Truths

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