Bittersweet: A Spiritual Perspective on Special Needs Parenting

by Abez UmmKhalid
www.MuslimMatters.org

I’ve tried several times to begin this article and this is my third attempt. I’m supposed to be writing about special needs parenting from an Islamic/Muslim/Spiritual point of view, and the challenge is finding a balance between the bitter and the sweet. I have had some experience, my son Khalid was born with autism, a neurological disorder with complex genetic causes and no known cure. He woke up crying every two hours from the day he was born until he was almost three. He learned how to talk just last year and he occasionally still freaks out if you laugh too loudly in his vicinity. He used to bang his head against windows and walls and cry until he threw up. He’s made wonderful progress, Alhamdulillah– All Praise is for God- but at the end of the day, he still has autism, and we still have our daily challenges.

It’s hard to understand autism from the outside, and to be fair, no two people are affected in the same way. On the severe end of the scale, there’s our friend Dan, who does not talk, cannot walk properly and was in diapers until 13. His parents put him in leather gloves to prevent him from biting his hands to the bone when he is frustrated. On the other end of the spectrum is our friend Zaina, who has Asperger’s Syndrome, which is a form of autism that Hollywood likes – she’s extremely intelligent, is physically normal, but so socially impaired that she barely talks, cannot make eye contact, and cannot even begin to understand the complexities of interacting with other people. My son Khalid is somewhere in the middle. He has his funny quirks, but he can pass for physically normal unless he’s spinning in circles or flapping his hands. He’s no genius, and his mental age may be behind his physical age, but he’s slowly learned his ABC’s and even attempts to play with other children. Alhamdulillah, his autism is moderate.

In the two years since his diagnosis, I’ve learned more about patience and trust in God than I had in my entire life before that, and having a child with autism has been a blessing that I cannot imagine living without. I’m sure there’s more to learn still, but I know that once upon a time, I thought waiting for an hour was a long wait. Until a few months ago, putting Khalid to bed took an average of an hour and a half every night – sometimes less, often more. I would sit next to him, or lie down next to him, and wait for the screaming, bouncing, kicking, pinching and crying to fade into silence. And I had to sit quietly, and not move or talk, and do my best to imitate some sort of maternal rock as the storm of Khalid battered against it.

I didn’t do a very good job at first, I would yell at him to lay down, and he would become scared and cry. So I would yell more, and he would scream, and I would yell more, and it would escalate until he would be shaking with fear and I with rage and at some point it occurred to me that my own son was genuinely terrified and couldn’t understand why he was being yelled out. And then, Allah gave me patience, and then a diagnosis, and then the understanding that Khalid wasn’t disobeying, he just had no idea what was going on.

Even today, when Khalid is having a weird night and half an hour turns into an hour and a half, I just sit in the dark and do zhikr– the Muslim equivalent of prayer beads- or plan the next day, or think, and if he’s still not tired after about two hours, we just get up and go play for a bit. I’ll have a glass of water and maybe even a cookie. Khalid will get on the computer (yes, he uses the computer) and play games for as long as is takes for him to start looking tired, after which we’ll go back to bed again. And I’ll sit next to him in the dark, and he’ll roll around and count his toes, or sing quietly to himself, and occasionally he’ll sit up to make sure I’m still there, but eventually he will doze off and I can finally get to bed, sometimes three or four hours after we “went to bed.” And before you accuse me of being exceptional, Aal’s mother spends three hours just feeding him, three times a day. And he still hits himself.

Yes, I have a lot of stories. We autism moms tend to gravitate towards one another, not because we have a manifesto or a secret handshake, but because at the end of the day when your child took off their dirty diaper in the mall and got lost in the parking lot and wouldn’t eat their lunch because some of the carrots were too orange, no one else will understand you except for another autism mom.

Another mother, Noura, called me a few weeks ago, and she had that quiver in her voice that we all get from time to time when we need to break down a bit so that we can put ourselves back together. She had been trying to get her daughter into a school, and no school would take her. She had been trying to get her daughter into a swimming class, but when she went for her first trial, the instructor refused to accept a child with “such behaviors.” Noura had been running desperately from one place to another to get her daughter accepted into social and educational programs of any sort, because her daughter will be turning eight and has never been to school. She told me these things crying over the phone, frustrated and burnt out and just needing to hear something to keep her going. “I just don’t know,” she kept saying, “I don’t know what else I can do.”

I didn’t know what else she could do either, except for what I do, which is to ask Allah for help. We have been told that a child’s heaven is beneath his or her mother’s feet, which is a metaphor for love and service. But in some cases, a mother’s heaven may be beneath the feet of her special needs child. And perhaps the father’s too, Allahu Aalim– God knows best. The tables get turned on both parents, and those who were relying on their grown children for care in their old age are instead preparing to care for grown children who cannot feed, bathe, or even clothe themselves. Instead of looking forward to retirement, parents dread the time when they can no longer earn an income to support their children.

If you want to see an adult cry, ask a father or mother what will happen to their special needs daughter or son after they die. If you could see inside of their head, you would see an exploding matrix of questions, fears, worries, and desperate plans. You would re-read every news story you’ve ever read of neglect or abuse, or even rape, of special needs adults by paid caretakers who take advantage of individuals who do not know how to defend themselves or even speak. You would hear the point and counterpoint of a mind divided between wanting more children who could potentially care for the child, versus not wanting to risk having another child with the same genetically linked condition. You would see mental excel sheets tallying savings and money spent on current treatments versus saved for future life-long care, and money not saved for the education of the other children, and you would see a lot of figures in red. Special needs parenting is expensive. And scary. But here’s something unexpected – it’s also beautiful, and humbling, and when undertaken with trust in Allah and faith in His decisions, it is the catalyst for spiritual evolution.

Recognizing that our special-needs children are a trial as well as an opportunity to earn blessings, we are able to change the stories we tell ourselves. When we look at our children, and the devil whispers “Why you? Why your child? How could God do this to you? It’s not fair,” we can bravely answer back. Allah chose me for this because He knew I could handle it, and He never gives anyone more than they can bear. I am not Khalid’s Guardian Lord, Allah is, and when I die, He will look after Khalid with a love seventy times greater than my own. I can only save so much money and teach his sister to look out for him only so much. Khalid’s care is with Allah. His provision and care is with his Lord. And he may never learn how to work and he may never get married or hold a job, and he may die alone, or he may die before I do, but he will be raised as an innocent – one who will be exempt from the fear of judgment because he never knew what sin was. If he never had a job, then he will never be asked about his wealth. If he never speaks, he will not be asked about lying. And these things are terrifying for me to think of, to type even, but I know that Allah has given my son autism for a reason, and all of Allah’s reasons are good reasons.

The Prophet Muhammad, peace and blessings of God be upon him, said:

“The greatest reward comes with the greatest trial. When Allaah loves a people He tests them. Whoever accepts that wins His pleasure but whoever is discontent with that earns His wrath.” Narrated by al-Tirmidhi (2396) and Ibn Maajah (4031); classed as hasan by al-Albaani in Saheeh al-Tirmidhi.

“How wonderful is the affair of the believer, for his affairs are all good, and this applies to no one but the believer. If something good happens to him, he is thankful for it and that is good for him. If something bad happens to him, he bears it with patience and that is good for him.”

(Narrated by Muslim, 2999).

Sometimes, when I look at Khalid I wonder what life would be like if he were ‘normal.’ He has the most enormous, beautiful brown eyes. He skin is a light olive, he has silky dark hair and a smile that could melt the polar ice caps. Perhaps normalcy would be too dangerous for Khalid. Or maybe he would be fine, maybe the autism is for me. I know with absolute certainty that if my son did not have autism, I would not have been a dedicated parent and a desperate Muslim. If I had not been pushed through fear for his future and hardship through the present, I would never have understood what it really meant to pray. My trust in Allah and acknowledgement of his Rububiyya (Lordship) would never have moved beyond the superficial. Can you dread for your child’s future without losing hope in Allah’s mercy? Is your trust in Him greater than your fear?

It has taken me some time, but I can finally thank Allah for Khalid’s autism. It may save him from accountability , and it has definitely saved me from living in the unreal world – one where I care more about my child’s postgraduate degree than his faith and character as a person. And while I have an entire lifetime of challenges to look forward to, I am keeping faith that Allah intends nothing but good for Khalid and I. If that means waiting until the resurrection to see my son as a normal young man, then so be it. Khalid and I will meet again at Al-Kauthar, the fountain from which the righteous will drink in the afterlife, and sit in heaven with an eternity of ease to make up for one small lifetime of hardship.

May Allah have mercy on us all and guide all parents with special needs children and ease whatever difficulties they are facing, and strengthen their faith and increase them in patience, and reunite them with their loved ones in the company of the righteous. Ameen. (Amen)