Ramadan, Autism and the Trials of Our Hearts

At 4 a.m. there was a party going on at my house. With my nieces and nephew having spent the last 24 hours at our place having a sort of epic, ongoing Ramadan sleepover, and my sister-in-law and her husband coming over to do sehri (the pre-fasting meal) with us before taking their kids home – the atmosphere was noisy and fun.

Come on, finish eating! There’s only a few minutes left!

Quick, drink that water! Time’s almost up!

Who’s coming to the masjid to pray fajr?

And then through the comfortable din, through my attempts at shushing the non-shush-able crowd of kids, I heard him upstairs.

Making his noises.

Oh no. Lil D is up.

Will he go back to sleep? My sister-in-law asked me. Nope. That would be a big fat nope.

And then later, around 5:30 a.m., when the house had quieted down and everyone was relegated to their corners to finally get some sleep, the door to our bedroom bust wide open and Lil D came bounding in. He jumped on the bed between my husband and I and made his presence known. Yeah – there would be no sleep happening for anyone now.

I’m over it. Really, for the most part, I am. I’m over the absence of Lil D from the religious and family rituals that punctuate Ramadan.  Though in the past I quietly lamented his disinterest in sitting us for iftar (the fast-breaking meal), his indifference to salat (prayer) and of course his non-fasting status, I’ve been over it for a long time. I know his connection to Allah is something I’ll never come close to in my most sincere attempts.

But if autism is an all-consuming life for him and thereby me, and Ramadan is an all-consuming month of faith, worship and fasting, then as the proverbial saying goes – something’s got to give.  And that would be sleep.

With a variety of changes and difficulties Lil D has endured the past several months, one of the biggest stress points for us these days is sleep. Getting to sleep, staying asleep, chasing sleep, finding sleep, holding on to sleep, attaining restful sleep. Nighttime anxiety has colored Lil D’s life dark for several weeks, waxing and waning on a schedule I find difficult to predict.

The beginning of Ramadan we had several awful nights of anxiety and meltdowns. He had it bad. It was like clockwork – about an hour after iftar, Maghreb prayers and dinner was done, right about the time my in-laws and kids were readying to go to Tarawih prayers, the wailing and loud vocalizations would begin. And though he cannot control how he reacts to his anxiety, helping him find his calm while maintaining my own calm after a day of fasting became my personal Jihad.

But this is the challenge of Ramadan for me. Life doesn’t stop. Our schedules don’t flip from day to night — work keeps going, Lil D must be dropped and picked up from school, meetings happen, therapy continues, doctor’s appointments and consults are kept, anxiety and meltdowns must be managed and soothed and the other children must be parented as always. And all this, while fasting and trying to elevate my connection with Him.

There are glaring truths that have become so apparent to me this month, so bright and glittering in its realness that it hurts my eyes. I no longer feel envy of others who can attend Tarawih nightly or read so much Quran, those who are able to make time for their personal ibadat (worship). On the eighth fast of Ramadan I finally got the chance to go to Tarawih, where my friends warmly greeted me and asked where I had been.

Where have I been? Home with my son. That, and him, is where my ibadat (worship of Allah) has always been. And so this is the truth of my Ramadan, made clear to me day after day, night after night spent with my children and family (from an FB update I wrote during the first week of fasting):

Lil D went it bed at a reasonable hour tonight with little-no night time anxiety/meltdowns. Ramadan prayer answered today. The world is in turmoil and I pray for a peaceful outcome for all, for Allah to draw us all close and shower his mercy and forgiveness on us all – but above everything it starts and ends with Lil D (and my other kids).

The biggest trials (and triumphs) of our lives are those in our own homes and in our hearts.

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