Ramadan Despair: Dilshad Ali on raising a child with autism

Ramadan Despair

Daanish smiling.jpg

I looked at the clock, and it read 6:30 p.m. “Daanish should be home any minute now,” I thought to myself. And I moved to the stove to turn off the burner under the haleem I was making for iftaar, and went to get his dinner ready, because when Daanish returns from a CBI (community-based instruction) outing with his therapist, he’s usually starving. If I don’t have dinner ready, I am risking a meltdown.

I heard him before the doorbell rang – wailing in a way that cuts through my body, causing my ears to ring. I opened the door and he came in, eyes all puffed up from crying and rubbing, wailing away into a crescendo until he threw himself on the floor and beat himself on his head. Before I can say a word, his therapist instructed him to go upstairs to his room. He knows that when Daanish gets like this, I prefer him to go upstairs to work through the tantrum, so his brother and sister don’t have to see him in that state.

I followed them up to his room, where Daanish got in bed and buried himself under the covers. The therapist told me the tantrum started in the check-out line at Wal-Mart, which they often visit to work on shopping skills and social programs. In the parking lot on the way to the car, Daanish flopped down on the ground and engaged in SIBs (self-injurious behavior). With that information, I knew this wasn’t going to be over quickly.

The therapist left, and Daanish and I spent the next 45 minutes in his room. There was nothing I could do to bring him out of his tantrum. I rubbed his back until he pushed my hand away, and I uttered prayers, hoping it would miraculously sooth him.

The kitchen rattled below me, as my mother-in-law took over and finished preparing iftaar, and my husband engaged our other two kids. I shut the door to Daanish’s bedroom so they wouldn’t have to hear. And I knelt by Daanish’s bed and just watched him and prayed. I prayed Asr, while Daanish alternated between bouts of silence and loud howling. Then I went downstairs and got his dinner and went back to the bedroom to feed him between cries, because I knew he was hungry, and I had to get him fed, and get the other kids fed, before iftaar time came.

Eventually he cried himself out. With a bribe of a Hershey Kiss from his three-year-old brother, Daanish eventually came downstairs while we broke our fast and prayed Maghreb.

At the end of Maghreb, I silently uttered the prayers that I’ve been saying for more than nine years: Ya Allah, please help Daanish manage his autism. Please give him sakoon (peace) and happiness. Please help him learn to communicate. Please help him grow up to be independent. Please give me strength to keep going.

Ramadan is an especially trying time for Daanish and me. I know about the blessings and beauty of this month, that our good deeds are worth 70 times more, that if our niyyat (intentions) are strong and good, our prayers will insha’Allah (God willing) be answered. I’ve covered all aspects of Ramadan, written prayer galleries and galleries about how to achieve that spiritual connection with Allah.

I go to tarawih when I can, take care of my family, make my salat, try and read the Qur’an. And sometimes, on a very rare occasion, I get closer to achieving that feeling that Haroon Moghul talks about in his post on prayer. But much more often, I have nights (that last into the middle-of-the-night and then the next morning) like today, when I wonder, what will it take? How much suffering will Daanish endure? How much longer can I take watching him go through this? Will my prayers ever be answered the way I want them to be answered? Do I believe that Allah will grant me what I desire?

Believe. Ahh, yes. That’s where the trouble lies. What do I believe? What do I believe about the power of niyyat, prayer, and Ramadan? On nights like this, I still believe in fasting, I believe in making my five daily prayers, I believe in keeping it together for my family. But I don’t believe that it will get easier, that it will get better, and that my prayers will be answered. I beseech God and get angry. And maybe because I don’t believe strongly enough – that is why Daanish continues to have nights like this.

I know this fact very well about Ramadan – that if you don’t try to seek that spiritual connection, if you don’t try to pray more meaningfully, if you don’t thank Allah for what you have been blessed with and ask for his forgiveness, if you don’t believe in the power of Allah – then all you’re doing is a crash diet.

So, how do I get past days like this? When all it feels like is a hollow physical fast? When I’m going through the motions at salat time, but I’ve got no fire in me, no meaning in me, no belief in me to even try and reach any sort of nirvana?

Sorry to be a downer. But I’ve got to be real. This is my Ramadan struggle. Many times I dig deep and remind myself of all we are to be thankful for, of how blessed we are, of all that Daanish have accomplished, of all his good days, of how others have it so much worse. I remind myself that I must be grateful to Allah. But then there are the bad times that are hard to ignore. The bad times are like goons hanging around me, crowding me, squeezing me from every side to give in to frustration, anger, and despair.

I constantly remind myself of two things: From the Qur’an: “So, verily with every difficulty there is ease. Verily, with every difficulty there is ease. (94:5-6). But sometimes it isn’t enough. I hate to admit that, but there it is.

From an oft-quoted hadith: “Three supplications shall never be rejected: The prayer of a parent for his child, the prayer of one who is fasting, and the prayer of the traveler.” So I ask – why not me? Why is my simple prayer for Daanish – that he not have bad tantrums and have sakoon and happiness – not answered? I am his mother. I am fasting. Yes, it is pathetic and rather arrogant for me to question Allah’s wisdom, I know. I tell myself all the time that Allah answers our prayers in ways that we don’t understand, in wisdom that He only knows. That everything happens for a reason.

But when I see Daanish beating himself, wailing and crying for hours on end, when he exhausts himself to sleep only to wake up and start it all over again, when I see him work so hard to manage his autism, when I see his frustration because I cannot understand him, when I, his mother, cannot fix his problems, then the struggle overwhelms me, and I question Allah. I question my prayers. I question what my fasting means. I question why I cannot seem to give more to Allah.

I ask this question: Is Daanish suffering because I am not good enough in Allah’s eyes?

That is my Ramadan struggle.

Dilshad D. Ali is the Managing Editor of the Muslim Portal at Patheos.

 


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