July 6, 2020

When Autism Doesn't Stop for Ramadan, and Ramadan Doesn't Stop for COVID-19

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Editor’s note: All this month, Haute Hijab team members are bringing you our Ramadan Diaries, posts about how our month is going, things we’ve learned and struggles we may be having. We are figuring out fasting and worship at home, strengthening our connection with Allah (S) and how to build community while in quarantine, just like all of you! This entry comes from me  Dilshad  your HH blog editor.

As salaamu alaikum and hello everyone!

I’m having one of those Ramadan days right now when I’m running on fumes, but things still need to be taken care of. This particular Ramadan in quarantine is not like anything else we’ve experienced, although aspects of it aren’t so far removed for what is the norm for my family. 

Dilshad Ali

If you’ve been following my writing at Haute Hijab or on my personal blog in the past, you know that my eldest son, now 19, is autistic. And autism doesn’t stop for Ramadan, and Ramadan does not pause or “wait for things to return to normal” when a global pandemic is at hand. And, that has made things challenging but also not so different then what our regular Ramadans are like in my home.

What do I mean by that?

Earlier in April I attended an online support group for parents of children with disabilities led by Muhsen (Muslims Understanding and Helping Special Education Needs). (Full disclosure – I serve on the board for Muhsen.) While I can’t discuss what was said because it was a private, safe space, I can say that the general uneasiness, mourning and worry that so many Muslims had in trying to figure out how to do Ramadan in quarantine, with our masajid closed and being confined to home, was something so many disability families like ours are quite familiar with.

I’ve never really had the opportunity to miss my Ramadans at the mosque because a) most mosques I attended weren’t really inclusive for my son or others on the autism spectrum (or those who have other disabilities) and b) the rhythm of night life in Ramadan, with community iftars, tarawih prayers and late nights, just wasn’t conducive for him. So spending a Ramadan at home, doing dhikr in the dark, breaking our fast at our kitchen table? All the norm around here.

So, why am I running on fumes today? Among the many challenges and medical co-morbidities that are a part of my son’s autism, sleep issues is a big one. After heading to bed around 12:30 a.m., having prayed tarawih at home and wrapped up other things, I awoke at 4:15 to get the family (those of us who are fasting) up for suhoor. We finished our quick meal, prayed fajr in congregation and headed back to bed.

I heard D’s familiar sounds as I settled back in bed, hoping to snatch two more hours of sleep before the alarm went off to start my work-from-home life. But he was exuberantly up, which meant I was up too and facing a day on a few hours of sleep. That also is a well-worn Ramadan occurrence around here.

But it’s ok. It really is. Last week at a company HH meeting, we were all talking about what we have learned about ourselves as we all shelter-in-place during this COVID-19 pandemic. I’ve learned that my family is enough. Shukar Alhamdullilah. 

When this all started for us six weeks ago, when D’s school and my other children’s schools shut down (and remain closed for the rest of the year), when D’s entire team of care givers, speech therapists, occupational therapists and teachers dropped out of his life in a flash, we were left with just ourselves. It takes a proverbial village to manage our lives, to manage D’s life. And, that village instantly disappeared.

Dilshad Ali's son

In a way, we were thrust back into our early years of family life, when D was first diagnosed and we were trying to figure this out on our own. As years passed, I built up a “Team D,” managed by me, to help D learn the myriad of self-care, community-based, independent living and other skills needed to live a life on his own, if it ever came to that. COVID-19 sidelined Team D, and my first thought as we all entered into this new reality of staying at home all the time was, how are we going to do this? 

It’s exhausting and not without its immense challenges and heartbreaks. But we are doing this. My family is enough. We, with Allah (S) carrying us, are all we need for each other in this crisis. D is happy to be spending so much time with his younger sister and brother, who normally also have very busy, scheduled lives. I’ve seen my other kids’ souls and hearts stretch and expand to further embrace the complexities of living physically within the presence of each other 24/7. 

Don’t get me wrong, it’s not been without it’s frustrations, meltdowns, reoccurrences of extremely worrisome behaviors or a litany of other challenges. My husband is a physician and on the front lines of this pandemic. We worry all the time about how this will play out, how to keep ourselves and our children’s grandparents safe. But, we have also come together in a way that makes this Mamma so grateful.

My children are fasting; my daughter is independently reading her Quran as she also prepares for her AP exams next week; my eldest son just started the most basic of virtual learning with his school; I still have my job and am working from home while the kids school from home; thus far my husband is safe.

And we have iftar together every night. Fabi ayyi ala i rabbikuma tukathiban. “Indeed, which favors of your Lord would you deny? (Surah Rahman).”

Please note, this Ramadan diary post is taking place of my regular top-of-the-month “From the Editor’s Desk” column.)

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