He does not get up for suhoor, the pre-dawn, pre-fast meal, because he is not obligated to fast nor can he tolerate fasting. And, to disrupt his sleep so that he could just join us at that early part of the morning would be asking for major trouble.
He does not read the Quran (But we read it to him. He is nonverbal and can’t read English, let alone Arabic, but he can repeat an approximation of the shahada). He does not stand with his siblings and me in prayer (I can get him to stand for maybe two seconds before he wanders off, or sit for two seconds in my lap at the end of prayer).
And he does not partake in the nightly iftaar (fast-breaking meal). Our daughter, who is fasting about every-other day this Ramadan, always joins us for iftaar and dinner, and our five-year-old son, though he eats his dinner and hour earlier, also sits with us at that time. But Lil D? Well, his dinner is done about 1.5 hours earlier and iftaar time is right when he is winding down for bed, lying on the couch or floor somewhere on a pile of pillows as the blissful waves of drowsiness start to lap up against him, taking away much of what was confusing and tiring and jarring about the day.
We end up putting him to bed often right at iftaar time or just after breaking our fast. Sometimes, if we hear him singing to himself, we allow ourselves to pray the evening Maghreb prayers before one of us goes to help him through his bedtime routine.
And more often than not, we are too late as he has already drifted off to sleep, his favorite red Maryland Terrapins baseball cap askew on his sweaty head, arms drawn into his tight under armor shirt, which is hiked up to expose the smooth skin of his back and plumpness of his belly, legs splayed with dirt smudges on the heels of his feet and toes.
And we gently rouse him – come on Lil D. Its “nee nee” time (sleepy time). Let’s go to the potty; let’s go to bed. And after a few minutes, he reluctantly stumbles up, eyes half-closed in sleep, leaning heavily against us as we guide him upstairs, into the bathroom and finally to his bed, covering him with his favorite heavy, weighted blanket, turning on his white noise machine and turning off the light before we shut the door and leave him to slumber.
We go back downstairs to eat dinner and collapse on the couch with our younger two kids tumbling over our legs, peppering us with talk and questions as exuberant 5 and 9-year-olds that are enjoying a lazy summer break are wont to do. And all we want them to do is just be quiet and let us be silent for a few minutes after the day’s long fast.
We contemplate tarawih prayers. In years past when my in-laws spent their Ramadan with us (they are visiting other relatives during this Ramadan), my father-in-law was the every-night-tarawih-attender in our family without fail. My husband and I would go a few times a week with our children, as my mother-in-law almost always chose to stay at home for her ibadat (worship) and would be that adult presence in the house while Lil D slept.
This year we are on our own, and when friends ask me, “How come we don’t see you at tarawih? You’re hardly here!” I think, well, who’s going to stay home with Lil D if I come?
A few nights my husband went alone and I stayed back. Once I went and he stayed home. But something is missing. We are both tired – him from the long hours worked at the hospital, call nights and call weekends, a schedule that cannot and will not be altered to accommodate the nearly 17 hour fasts we are doing.
And I, well, I am tired too. Autism doesn’t let up for Ramadan, not one second. It is as constant and relentless as it has ever been, and it doesn’t take any mercy on a fasting body. Lil D’s school and home therapy schedule remains the same. After waking at 3:30 am to get my family up and prepare suhoor for them, then pray our Fajr prayer, I still need to get him up at 6:30-7 a.m. and help him through his morning routine as he readies for school.
Work is still there, as are home duties, the other kids, and a thousand daily fires (ok, maybe I exaggerate, but it seems like a reasonable number) that need to be stoked or put out for Lil D:
Meetings with school, tweaking his behavior plan, trying to figure out why his self-injurious behavior is once again on the rise, pleading with transportation because there is no air conditioning on his bus and the 90-100 degree heat coupled with a 45 minute ride is causing him distress, powwowing with his home therapists on things we need to be working on, filling out medical forms, researching new treatments, handling his intermittent meltdowns and ongoing OCD behaviors when he is home, trying to find some quality time to spend with him that isn’t about therapy or learning but is just about being together in the moment; trying to help Hamza with his reading and helping him memorize and practice du’as, sitting with Amal for her Quran reading, cooking, schlepping the kids around town for various errands and activities.
Praying. Stealing minutes to read snatches of the Quran. I come back nightly to one of my favorite surahs with my favorite verse – one I have desperately clung to so many times in this blog: “Fa inna mal ‘usri yusra. Fa inna mal ‘usri yusra.” – Verily with hardship there is ease. Verily with hardship there is ease.
Where is Lil D’s place in this world? Where is his place in our faith? Where is he this Ramadan while I fast and partake in the rituals and try to find that all-too-often elusive God-consciousness? I think of something another Muslim autism mom wrote on her Facebook page about her son:
“There is something about my autistic son’s unselfishness, his total lack of an sense of ownership, his lack of expectations from anyone, the simplicity of his lack of speech, the unhindered joy and sadness he experiences now well into the age past most other kids (who by 7 have learned to fake and lie), his lack of “disappointment,” his lack of a sense of pride or self, that makes him easier to love. He lives like he owns nothing as if he isn’t really here, rooted and invested in this world like my other kids.” – Stranded Mom – Autism, Parenting, Islam
He is not of this world, my son, though we are trying so hard to teach him and heal him so he can be as best possible. Lil D is unmoored, untethered. Belonging to me, yet already living somewhere else much better, somewhere I hope he’ll bring me, too.
He is unbound from the fasts and rituals of Ramadan, whether through my own weakness or the blessings of Allah. Someday I’ll learn the truth.