In our home, routine is maintained, because it provides comfort and a modicum of predictability in how we start the day – not just for my eldest son, but also for me. 

I go into his room, turn off his noise machine, move the drapes to the side, push up the accordion blinds on the windows to let in the morning sunlight, and then tell him I’m going to move his weighted blanket. While doing all this, I call out, “Good morning, D.*” and utter the Islamic kalima, or profession of faith (and one of the five pillars of Islam) to launch his day with a remembrance of Allah, something I’ve done with all my kids since they were born. Then I remove the weighted blanket off of him.  

D., who is 24 years old and profoundly autistic, is the only one with whom I continue this ritual. My other two, at ages 17 and 21, are too old and too neurotypical to want this kind of mothering from me. 

I’ve taught my other kids to utter the kalima to themselves right when they wake. The idea is that the utterance of the kalima should be so intrinsic, so routine, so easily rolling off a Muslim’s lips when they wake into consciousness, that when death is upon them, they will say this (or think it) as they pass on. 

 Laa ilaaha illal-laah Muhammad-dur Rasoolu-llah. Ameen. 

 “There is none worthy of worship except Allah and Muhammad is the Messenger of Allah.” 

 After fully supporting him through his morning routine in the bathroom (and doing my best to protect his haya, or modesty), I help him with breakfast, uttering Bismillah as he takes his first bites, and pack his lunch, which contains zabiha/halal-compliant food that I’ve cooked. This is a double-edged sword – more on that later. 

We drive to his adult-day program, where I drop him to the door of his building with a cheery, “See you this afternoon!” And as I walk back to my car, I pause – as I’ve done every morning of his (and my other children’s) life as they leave for school or whatever it is they are doing – to recite the Ayatul Kursi, verses of the Quran from Surat Al Baqarah (2:255), as protection and safety over him. 

I blow the essence of these verses towards his building. I do the same in the general direction of my youngest’s high school and my daughter’s university, something I’ve carried over from my father, who would recite these (and other) verses daily after prayers and then come over and gently blow on the heads of my brothers, my mom, and myself. 

D. doesn’t do his five daily prayers, fast in Ramadan, give annual zakat or partake in numerous Islamic rituals that are an intrinsic part of the faith. He is profoundly autistic and non-speaking (but not non-communicative) with high support needs, raised in a multigenerational Muslim American home where the practice of faith is prioritized and respect for our South Asian and American cultures is as strong as is being an active part of our local and global autism communities.

The main fact in front of us is that we’re aging.  And while we’ve agonized (especially me) and supported him through the roller coaster transition from school into what those in our disability community like to call “autism adulthood,” another huge transition awaits us: What will our son’s living situation be as adulthood transforms life as our son and all of us around him know it? At some point, his father and I will die. 

Is it possible to find a living situation that not only supports and respects him and provides him with opportunities to live his life to the fullest, while also being respectful of the religious and cultural values in which we’ve raised him? Who are those values important to? Both of us? Him? Just us? What are we willing to let go of? What are our non-negotiables? What will be the best supportive environment for him, given his support, medical, and behavioral needs? What should the priorities be?  

Letting Go of Expectations 

“I saw him through the windows,” she recalled to me. 

I met Farha* and her family through mutual connections. They transitioned their profoundly autistic son, Bilal*, to a group home (or any kind of outside living facility) five years ago. I’ve worked in and written about autism/disability communities – including Muslim ones – for years, and it doesn’t surprise me that her family is the only Muslim one I know who has done this. I’m sure there are more, but rarely does anyone talk about it in Muslim/South Asian/Arab/MENA (Middle East and Northern Africa) religious/cultural spaces. 

The decision to help a disabled loved one transition to a living facility or situation outside of the family home is deeply personal and dependent upon a myriad of reasons, some of which can include the health and age of a person’s parents or caregivers, behavior or other issues that require the kind of support a family can no longer provide, the desire of the disabled individual themself to move out, and more.  

And if a loved one is profoundly disabled, that decision can become even more gut-wrenching, especially if the person is unable to fully advocate for themself. We reside in this smaller circle and have a number of friends with adult kids who are profoundly autistic. When the son of a dear friend moved into a group home last summer, I realized that out of this fluid and warm group of friends, we were the last whose son was still living at home. 

Bilal, whose autism manifests in many ways similar to my own son, transitioned to a group home months before the COVID-19 pandemic and lockdown hit. Prior to that, after having a nanny for several years, the family’s nanny left, and they realized what disability families around the country know so well – finding the right support was a huge challenge. 

“I stopped working,” Farha recalled, adding that she was also diagnosed with a medical condition that complicated her ability to care for Bilal. This prompted the family to consider transitioning Bilal to a different living situation. The pickings were slim in their region, so compromises had to be made. They helped Bilal transition slowly, something that varies depending on the guidelines and rules of different homes, supported living communities, or sponsored residential placements.  

“Every night I’d go with him … and I’d stay with him until he slept,” Farha recalled. “We made it slow, so he wouldn’t feel it much.” But then the COVID lockdown began, and for three months Farha and her family weren’t allowed inside the group home, so she would stand outside and see him through the windows. By the time restrictions were eased, “he had gotten used to the routine of sleeping there,” she said.  

Farha also used to provide lunch to Bilal when he was in school, which included his favorite South Asian dishes – something I’ve done for the entirety of my son’s schooling and continue to do, now that he is in an adult day program. 

She eased off providing home food once Bilal graduated from school. “My thought always was that Bilal needs to get used to food [in his Adult Day program and in the group home].” (I’ve realized this is where I’ve erred, in that D. pretty much only consumes the desi food I cook at home.) Once she was able to visit him again in his group home, Bilal had become completely used to the food they served. “It kind of broke my heart, because he does love his biryani,” Farha said. 

But she does hold some gratitude. “I’m thankful it’s a place where whenever I want to visit, I can go.” I asked her if she worried about maintaining any religious or cultural values when Bilal moved out or was that even a feasible priority to have.  

“You have to get over it,” she plainly told me, sharing a story about how she asked his group home to not serve pork only to see Bilal pick pepperoni off a pizza one time. 

 “The truth of the matter is that you have to let go of lots of personal beliefs and things when you send him away from home – that includes hygiene, religion, that even includes [the kind of] cleanliness [you maintained for your child at home]. I’ve seen so many times that his caregiver doesn’t have him wash his hands after using the bathroom. You have to learn to live with it.” 

But what if I can’t? Where does that leave our family, our son, when we only age in one direction? 

For a period of time, I contemplated whether we were prolonging the inevitable by D. still living at home with us whilst most of his peers had moved out. But each family has to forge their own path and ours, has us staying together for a while longer. And so I sit with this question that has thus far shown no answer to me: After a lifetime of raising all my kids in a Muslim environment, even though D. doesn’t partake in religious activities like the rest of us, how do I, at some point, transition him to a living environment where most likely none of this will be prioritized? 

 And though it matters to us as his family, does it matter to him? 

A connection to God beyond religion’s rituals 

Parents often lean on each other to figure out how to navigate the disability world, and I’m no exception. My friend Anna* and I get together every few months to catch up, commiserate, and touch base on what is going on with our sons.  At one point, they were in an autism class together in elementary school. Anna and her husband grew up Catholic and had planned to raise their children in the faith, as what her strict Irish Catholic mother called, cafeteria Catholics, who choose what part of church doctrine they wanted to follow. 

With two sons on the autism spectrum disorder (ASD) spectrum, her eldest is able to live and work independently. Her youngest, who has high support needs, recently moved into a managed residence with three housemates who have intellectual disabilities and a staff that supports them. 

Church and Catholic sacraments were part of her children’s upbringing, but with their younger son they “quickly went rogue and decided to do our own spirituality with him,” she said. Their son was unable to sit through church service or Sunday school and wasn’t being accommodated by his church. “The particular church I attended, while not uncaring, was overwhelmed by a rapidly increasing church population and was struggling to provide religious educational services even for the non-disabled children of the congregation. I was hurt, but I understood,” Anna said. 

A fellow mom friend, who also had multiple autistic children, attempted to organize a Catholic Sunday school class for neurodivergent children, but Anna decided not to include her younger son. After praying on it, Anna said she “got a sense of peace that [my son] had an innate sense of belonging and connection to God that the rest of us could only aspire to. In my mind, he was above the need for rituals that the rest of us benefited from.” 

This deep sense of belief, one which I also share from a Muslim perspective regarding my son, has carried Anna through all the milestones and challenges of helping her son transition to adulthood. When we sat down for a catch-up recently, she shared how her younger son was doing at the three-month mark of moving out. I asked her if the inability to maintain whatever faith/cultural/family values that were important in her family was something she found challenging when her son moved out. 

Anna told me that her and her husband’s main concerns were around getting their son’s basic needs met – medicine support, hygiene, clothing, and completion of daily tasks, only secondary to his guaranteed safety. “Despite the fact that we had faith in the residence we selected and faith in God, the first month of him moving out was sheer hell for us, and I am sure for him too. The people at the residence handled it very well, [but] there was just no way to get around ripping the emotional band-aid off,” Anna said. The religious/family/cultural values that I fret over? Like Farha, it really wasn’t a concern for Anna. 

And that makes a lot of sense. When our kids grow up and move out, we can’t dictate how the things we taught them and valued in our homes will be carried on in the lives our children create for themselves. I fundamentally know this. But this weighs heavily on my mind when it comes to my eldest, because while my other kids will pick and choose what they take with him, my eldest will probably, for the most part, meld into whatever living situation he is in and how things are done there. Even though I pray his future home’s support staff respects and maintains the things he likes, I know it’s a tall order to hope for Muslim values to be maintained. 

Sure, D. could live with his brother or sister as everyone grows up more, and they have said that’s what they want. But his father and I know – this isn’t a plan we can or should count on. 

Dreaming of a Muslim faith values-based disabled living community 

While nonexistent in Muslim communities (from the research I did), faith (or cultural) values-based living communities or group homes for adults with disabilities are rare, but not unheard of. In Southern California, Life Services Alternatives is a group of homes with 24/7 support care in Santa Clara County that offers personalized programs focused on skill-building. 

Their 15th residence, Hatikvah, is home to six adults and practices Jewish values. On the opposite coast, Ohel Children’s Home and Family Services (OCHFS) in New York, founded to serve Jewish families, serves more than 23,000 individuals with mental health support, adoption, foster care, respite, trauma and crisis response, compassionate care for seniors and housing for people with disabilities. 

Ohel Bais Ezra, a division of OCHFS opened a home for five young autistic men with a 24-hour staff soon after COVID hit. According to a press release, the home provides support services and programs for the young men as well as recreational activities, Shabbat-friendly meals and more. In Virginia where we live, HopeTree Family Services offers Christian, community-integrated group homes to adults with developmental disabilities. According to their website, residents can attend church within their communities and are encouraged to work or volunteer where appropriate depending on support needs. 

I love seeing these options out there, but the fact remains that they are few and far between. And for disability families, unless you’re willing to move (and upend state-rooted disability support benefits like Medicaid waivers, if your loved one has them), you’re beholden to what is geographically close. 

Which leads me back to my initial question, something Farha pushed me on: Should faith-based values be a priority at all when it comes to your disabled young adult moving out? Aren’t there far bigger priorities to focus on? As so many of us living in this world know, in pursuing the best possible future for our adult children who are profoundly affected by their disability and are unable to fully advocate for themselves, managing expectations coupled with nonstop vigilance and engagement is the only way to do this. This is what experience has taught me. 

And yet… 

I still can’t reconcile the idea of my son living somewhere where his haya is compromised, or he can’t have his favorite South Asian food, or halal food at all, or there isn’t God-infused niyyah, or prayerful intentions, married into the supports he receives. 

Joohi Tahir, the co-founder and executive director of Muhsen, gets what I’m talking about. Joohi and I go way back – I’ve served on the Board of Directors for Muhsen, a Chicago-based national organization focused on bringing disability programming to Muslim communities and making Muslim spaces more inclusive, for the past ten years (since its inception). Her daughter and my son, both profoundly autistic and around the same age, are similar in many ways, as are our family, religious practices and values. 

I asked her what the future living plans are for her daughter. I know at Muhsen, a long-term (and by long-term, I mean it’s still in ideation stage and not a part of the organization’s strategic plans yet) hope is to create some sort of Muhsen-run residence for adults with disabilities. Joohi shared her current plan for her daughter, which is something I ruminate over as well. 

“We’ve never considered her living outside of a family home,” she said. “Maybe because she is female, maybe because we’re conservative, we’ve never considered [it].” Her daughter’s two sisters (older and younger) are adamant that she should live with one of them in the future, Joohi said. Currently a family member plus Joohi’s oldest daughter have agreed to be her guardians in the future. 

“This is where we are,” she said. 

But this isn’t the same for everyone, Joohi acknowledged, and this is where hope for a Muslim-run, Muslim values-based residential home comes into play. “My husband is very practical,” Joohi said, sharing that he wants them to talk about some sort of residential or supported living community placement for their daughter. “He says we can’t expect that she’ll be living with her family, her sisters, for the rest of her life, situations change.”  

The problem, Joohi said, is that currently she doesn’t think there are enough Muslims who would transition their loved ones to an outside home. It’s still stigmatized. In my 20-plus years of covering disability, especially in Muslim spaces, I have to agree. Joohi points to the slow growth of their Good Day program (an adult day program) as an example. “We have Muslim and non-Muslim clients at Good Day [in Chicago],” because not enough Muslims are willing to send their kids.” 

Also, what would a Muslim values-based residential program look like? It would be based on universal values, Joohi said. “Dignity, kindness, respect, cleanliness, the bathrooms are maintained, there would be a lota [to use water for washing after using the toilet] if you want it. Halal food. Those are things no one is opposed to. Maybe du’a and dhikr for those who want to partake. There are so many things we could consider,” she said. 

I could get behind that in a heartbeat. But I also know that should this come to pass, this kind of home would probably emerge in Chicago, and my family doesn’t live in Chicago. 

Meanwhile at home, I cook halal and predominantly South Asian foods, the leftovers of which I pack for his lunch, and recite Ayatul Kursi after dropping D. at his adult day program. I contend with how my own stamina and health is changing as I age. Our family life – what we do, what we cannot do – revolves around D. It’s hard, it’s beautiful, it’s exhausting, it’s joyous, it’s soul-crushing and heart-breaking at times, it’s everything I love. It’s our normal, and none of us are ready to change it up.  

But the time is coming.  

*Names changed at the request of the individuals interviewed to protect their privacy. 

Dilshad D. Ali is a Senior Columnist for Interfaith America Magazine.