by Dilshad D. Ali
I’ve recently taken up saying prayers on my tasbih – much more so than I ever did in my life before. I sit in the rocking chair in the corner of my son’s room fingering my tasbih (something akin to a rosary), doing dhikr while he burrows under the covers on his bed, pulling the weighted blanket over his face as he retreats from the world and takes comfort in the dark, close, muffled space where nothing assaults his senses.
My goal is that he should finger the tasbih while I say the prayers, especially when he shows signs that a meltdown is coming, or is in the throes of a meltdown. He likes to play with beads, stim on them. So I’m hoping he’ll grow to play with the tasbih and learn to use the tasbih as a method of grounding routine and ritual – something recently pointed out to me by a very astute Catholic autistic adult who read a recent blog post I wrote about my son’s struggles.
We’re not there yet, but for now, me just doing dhikr while fingering the tasbih seems to help calm my autistic son. Maybe it’s the prayers, maybe it’s not. But it gives me comfort; it’s something to do, a way to throw my line back to God and put some previously lacking trust back in His will.
For the past nearly 12 years of raising my son (and other two children), ten of which have been dictated by his severe autism, my faith as a Muslim has waxed and waned. I have searched for the words, the examples, the feelings that would help me believe, help me have complete trust that Allah knows best, that He will answer my prayers. I’ve sought guidance through my family, through friends and halaqas (religious study groups), through YouTube videos of inspirational sermons and lectures, through the words of Qur’an and hadith.
But, when you’re in the throes of helping your severely autistic son live his life, when your prayers turn from hopes of recovery and independence to just wanting him to be happy and at peace, when you beseech God time after time and still see your son suffering, when you see your entire family affected by one child’s disability, faith and trust can grow tenuous. And so I found my daily prayers growing one dimensional. I found myself continuously frustrated.
Common Grounds across Special Needs
Last fall, purely with intentions of self-therapy and autism awareness, I turned to one of the things I do best: writing. I launched my own blog at Patheos, a multi-faith news and blog website where I’m a managing editor, and began writing about Islamic issues, autism and my son.
The response was overwhelming, and the connections that came from Muslims the world over as well as from people of other faith traditions lifted my spirits. I’ve always felt divided between my faith and autism communities of friends, that neither group understood what it was like to live our life. In sharing our story, Muslims with autistic children reached out to me from around the world, sympathizing, asking me questions, offering advice and prayers.
But another profound thing to emerge from this journey has been the bolstering of my Muslim faith from connections I’ve made with people of other religions. I shouldn’t be surprised, really. As a journalist and editor, I’ve sought to cover Islam in America in both horizontal (to reach out to other religious groups) and vertical (to deepen the conversations in the American Muslim community) ways.
Whereas I knew that the heartfelt thoughts shared by Muslims would help bolster my faith in Allah, what resonated even further at times was how people of other faiths ignited a kindred spirit in my struggles. Reading and speaking with them about their struggles and lessons learned gave me fuel to think of Islam, Allah’s will and innocent children in different ways. Soon after beginning my blog, I was blessed to become friends with Amy Julia Truesdell Becker, a writer who blogs at “Thin Places—Faith, Family and Disability” at Patheos and is the author of A Good and Perfect Gift.
Becker has three children, one of whom – Penny – has Down’s syndrome. She writes about accepting Penny and loving her as she is and growing stronger in her Christian faith, about finding strength and acceptance in God’s will and how He does or doesn’t answer her prayers – things I’ve struggled with for years with my children.
“So many people I know [with their own special needs children], whether or not they’re of my faith tradition, understand the traditions and value of my daughter in an intuitive way – it’s a special bond that goes beyond theology,” Becker said to me in one of our conversations.
“I think that most parents of children with special needs, regardless of their faith background or lack thereof, have some sort of innate understanding of humanity, of life in all its diverse form. I then understand that or make of that experience through a theological lens. There’s a point of difference between our faiths, but [this understanding of diverse humanity] is a powerful commonality,” Becker said.
It’s this common respect for all of God’s children, this idea that life is diverse, imperfect, difficult, beautiful, and a gift that helps me to accept that although I may not understand His purpose or plan, Allah indeed has one for my son.
Tradition, Routine and Self-Control
Now, I’m not a strong woman. I falter a lot in this thinking. I backtrack, and have to find that trust in Allah time and time again. Two weeks ago I wrote about the Jekyll and Hyde of autism, how Mr. Hyde’s awful persona has taken over my son for months now, how we are desperately trying to figure out what has changed, what may have triggered it.
An amazing thing came from this post of despair. A person, who self-identified as a Catholic autistic, told me that when I am despairing of how to rid my son of Mr. Hyde, I should teach him to pray:
“Give him a prayer rug or a kneeler or whatever fits your family traditions. Maybe two so he won’t be scared the first few times if you can be with him. Then, when you hear the perservating, when you can tell a meltdown is about to happen- that’s the time to pray. The routine of the prayers is calming.”
“I may not be able to meet you on theology—but when it comes to tradition, routine, and self-control, Islam is equal to or better than Christianity on all three. And it’s those three things that the Autistic needs to survive in the modern world.”
This advice has been a turning point. As I wrote in a following post, “My son thrives on routine. And, when he is in the throes of a meltdown, his therapists and I often instruct him through short commands to help ground him and occupy his mind and hands (clap your hands, stomp your feet, touch your nose, do the puzzle, do this, do this, do this) until hopefully he comes out of it. Why not add the tasbih or rituals of salat (prayer) to his arsenal of meltdown-breaking weapons?”
You never know where religious strength will come from: divine inspiration, self-reflection on faith, immersion in sermons and scripture, or from a simple piece of advice given by a Catholic who understands how the rituals of Islam may help an autistic child.
Becker said to me, “Sometimes prayer’s purpose is to change us, not to change our circumstances.” It is with this thought, and with the words of the Catholic commenter, that now, for the past week, I sit in my son’s room, perform my Maghreb salat and then take a tasbih and whisper so he can hear, Subhanallah, Alhamdulillah, Astaghfirullah, Allahu Akbar.*
*Glory be to God, All praise is due to God, I seek forgiveness from God, God is Greater
Dilshad D. Ali is the managing editor of the Muslim Portal at Patheos, editor-in-chief of Altmuslim at Patheos, and she blogs at www.patheos.com/blogs/muslimahnextdoor. She is the mother of three children, the eldest of whom is severely autistic.