Ramadan was different when D was 14 and autistic.
Ramadan will be different with D now 17 and autistic.
The autism diagnosis and pervasive influence in our life doesn’t change. D, however, now a young man entering a different stage of life, has changed. As has his younger siblings, who are now 10 and 14. As have I – a woman in her fourth decade of life, preternaturally beyond the scope of what typical realities are. But then again, whose realities are typical, if they are not typical and unique unto the person living them?
I don’t worry so much anymore or find myself consumed by anxiety as Ramadan approaches. At least, this is my frame of mind this year. I’ve spent far too many Ramadans past worried over how the month is going to go, how to manage D’s needs and the needs of the rest of my family, how to maintain the routine D so very much relies on to keep his equilibrium intact while the rest of our family’s routine is turned upside down in a variety of manners by what Ramadan asks of what and what we want to give to the holy month and God.
Maybe it’s because I’m entering that part of life where I know more firmly that whatever will come to pass will. Whatever is meant to happen will. And I simply cannot make everyone’s Ramadan perfect. I can only try and admit when I don’t have the capacity to try harder then what I am capable of. Maybe it’s that extraneous things matter less and less to me as time passes – appearances in the community, or even lamenting how and on what terms we can interact with our community in Ramadan, which should be a time when there is more communal activity.
Ramadan nights spent with D in the dark of his room doing dhikr instead of at the mosque or prayer hall taking part in tarawih prayers is a bittersweet reality I’ve grown to accept. That I cannot shepherd my other two children to the mosque with more regularity is a reality I’ve grown to accept. That friends in my community still ask me (though they should know better and to ask different questions) when they see me at tarawih prayers a few times in the month – where have you been? We hardly see you? – is a reality I’ve grown to accept.
There is a sweetness in the traditions and secrets my family shares among ourselves – the unspoken knowing that we must work together as a family to make sure that D and whomever is not fasting eat their meal on schedules, that we cultivate more patience between ourselves as the evening wanes on and D’s nighttime anxiety looms in front of us.
It isn’t perfect by any means. We are not always our best selves with each other by any means, but we have come through enough together to sometimes reach the end of the day and just surrender to the fact that it is hard. And sometimes I still wonder – I’m sure I’ll always wonder – where God is in all of this. Where is He for D, for my other children, for me? What is His meaning in all this? And will He accept my imperfect forms of worship, my inability to read the Quran in long stretches or pray intensely every night after I am rendered exhausted by fasting and the caregiving and the loving?
He will. Surely, He will.
I sometimes read with amusement and appreciation the Ramadan tips and planning guides, the preparations others are doing in anticipation of this holy month. I too, have some preparations I undertake, some goals I set for myself and my family. But a lot of it is about maintaining routine and keeping things homeostasis while encouraging and accommodating as much internal reflection and worship as possible.
To my fellow Muslim autism and disability families, my autistic friends and those living with disabilities, mental and physical – I pray your Ramadan is one untethered by the trappings of expectations and self-doubts. I pray that you find peace and a stronger connection to the Divine in whatever forms of worship you are able to do. I pray for a Ramadan of peace, contentment, meaning, clarity, forgiveness and ease. I pray that you find the snatches of time to reflect, do dhikr, read Quran, pray tahajud or tarawih – whatever you can manage, however you can manage it.
We are a community bound together by common experiences and struggles, and inevitably when I falter in my trying to find meaning and purpose in my Ramadan fasting, I will remind myself to look to D in how he lives his life and look to Allah – unmoored by trappings of expectations and welcome to whatever we have to give, however we manage to give it.