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.

 

  • Us

    Interesting read

    • sister

      Assalamu alaykum dear Dilshad,

      May Allah swt make things easier for you – ameen.

      It seems to me that you are doing a great job in raising Daanish mashaAllah. It is obviously very difficult and there are times when you wonder if it will get any better but your actions, your behaviour and the way you are raising him are shaping him and inshaAllah this along with your duas will bear its fruits in time.

      Allah swt tests those He loves, to raise them to the high ranks that He has ready for them in Jannatul Firdaws. There are also many lessons that He is teaching you and that you are also teaching others. For example, this post of yours has really made me question and evaluate the way I am with my son and the lack of patience I have with him and inshaAllah I hope to improve in this. You have been a cause of this reflection.

      Don’t despair my sister. Have hope in Allah swt. He is how the believer thinks of Him to be. So if you have trust and hope that He will make things better, with firm conviction, then inshaAllah it certainly will.

      Fi amaanillah.

      • Nhd2004usa

        May Allah bless your family. I have an Autistic elder brother who is just 14 and half years old. He is not verbal and

        hard to communicate. Having an Autistic brother is really challenging and exhausting..

        My emotions are like roller coaster lurches from disbelief, anger, relief at finally having

        an explanation for my brother unusual behavior, surprise, helplessness devastation, an

        explanation for list goes on. At early age my father taught us how to help my disable

        brother and how to take care of him. He hugs and laughs with me. It is a very special

        relationship. Sometimes it is difficult and strained when his behavior is bad and loud voice.

        But overall, it wouldn’t change a thing about my relationship, he is still like an baby

        brother for me. I am the youngest, and my elder brother together take care of our eldest brother. My mom says, if I help my brother, Allah will send us in heaven with my Autistic brother.
        We are on this ride together for better or for worse and we share in the responsibility.

        As the time pass, everything will be fine . Once again may Allah bless Daanish him and always keep him happy.

        • Sheemadali

          I feel I am being punished for my sins so I have a son with global devp delays. Please help I feel I am not doing enough for my child that I am not a good mom . I am scared of dying and feel time is going by too fast and there is no quality to it.

          • Sheemadali

            Please respond to me ASAP

  • Sip858

    May God ease your struggles and give you the best in this life and the next. May He raise you and your family on the Day of Judgement and give you the highest level of Paradise for your faith through this difficulty.

  • Rabbi Rachel Barenblat

    Thank you so much for sharing your struggle. I have no wisdom to offer, but please know that you have been heard, and that you and your family are in my prayers. May God grant you, and Daanish, comfort and peace.

  • Anonymous

    Dilshad, I am an autistic woman and I recognise my younger self in this post. Until fairly recently, my mother was still saying things like, “I hope it’s nothing I’ve done.” She blamed herself for my difficulties and for not being able to alleviate them.

    Nothing could be further than the truth. Supermarkets are very frightening environments for autistic people, due to all the sensory stimuli – I still struggle to go in them and when I do I often end up biting myself until I bleed. The pain of the bite numbs out all the other pain that is crowding down on my head. Standing in the queue is especially difficult, as you are surrounded on all sides by people. The beeping of the tills (on top of the sound of the chillers, the music, the talking, and everything else) is often the tipping point for me.

    It helps me to wear earmuffs in the supermarket. Would Daanish feel better if you got him a pair? Another thing that helps me is sunglasses. Fluorescent lighting can be very hard for autistic people to cope with, and it’s nightmarish in places like Wal-Mart. Autistic behaviour may look unpredictable to non-autistic people, but there’s usually a reason for it.

    P.S. If it gives you any hope, I’m pretty independent these days, and so is my nephew, who has intellectual disabilities in addition to his autism and is much more severely affected than I am. :) I have my own apartment with a support worker to help me, and I enjoy all that life has to offer me. My nephew lives in a residential care place that he loves and has a job on a farm. Autism presents you with some puzzles to solve, but it doesn’t mean you can’t be happy.

  • Shehnaz

    Dilshad,
    My duas are for Daanish and your entire family. I cried as I read this article. As a mother of two young boys, I can not even imagine your challenges. May Allah answer your prayers.

  • A friend

    You and your family are in our prayers. Realizing Allah has a reason behind everything and not losing hope in his wisdom is the beginning.

  • Amina9577

    Allah has put you in this test and inshallah He will reward you immensely for all you endure. All your feelings of frustration and anger are understandable so don’t think you are not good enough for Allah. Allah chose you to be Daanish’s mombecause only you were good enough in His eyes for daanish. You are being tested because you are loved by Him. You and Daanishu are always in our prayers and IA he will become an independent adult Ameen.

  • Sabiha

    Dilshad,

    May Allah(S) make things easier on you and your family……your article brought tears to my eyes…..because there are times when each and every one of us has their faith tested…..the key is to acknowledge that this is a human trait and get back on the “straight path”…..I was reading this Quran/hadith reference (can’t quote exactly)….but it mentions this exact thing….

  • Mitlov

    I am the father of a five-year-old autistic boy, though he appears to have less severe autism than Daanish does. In answer to your final question: NO. Even asking such a question is self-torture that no parent of a child on the autism spectrum should ask. Autism is a neurological condition, a different programming of the brain. We don’t know why it happens, but it is just as biological as cerebral palsy or schizophrenia. It is not a divine punishment.

    As parents of autistic children, we do what we can do to make life as good for our children as possible. The fact that you put his well-being above the other plans you had for the evening is a testament to the strength of your moral character. The fact that you were able to calm him is a testament to the strength of the bond you have formed with him despite a neurological condition that makes such bonds difficult to build.

    Do not, for a second, question whether what you are doing is right, or good enough. You are a model parent of a special needs child.

  • Anonymous

    First and foremost- dear sister, Allah swt never creates life as a punishment. Banish the notion from your mind. Neither Danish nor you are suffering as any sort of punishment. In fact things are the exact opposite.

    I know nothing of you and your family but I do know this- Allah swt tests those who are closest to Him. Never, EVER take your struggles to heart and think these are punishments. Nothing could be further from the truth. These tests and your reaction to them will speak entire volumes of your life after we leave this Earth, and while the days may seem long, tiresome, overwhelming and even bleak, remember we are here for only a blink of an eye.

    Push yourself harder and harder to be patient and understanding and reach out to ALL of your brothers and sisters around you, we will always hear you. You are not alone and I’m glad that you have created this blog to share with us. I pray that I can somehow help ease your burden ( and I do NOT use this word negatively) and that Allah swt gives you patience and strength, though it is clear to us all that you are already so strong and steadfast to wish I say Masha’Allah, repeatedly. I commend you! What an example you are for us all! Masha’Allah!

    It is easy for strangers to advise you, to tell you to be strong and to not worry and to share platitudes of understanding when your struggles are not their own. I myself could never truly understand what you go through each day. But sister please believe me when I say I wish I could. I wish was right there with you. I wish on the longest, and most difficult day that I could switch places with you in a heartbeat and give your family all of my own strength and my own fresh energy to keep going. I pray that at the very least my words may be of some slight rejuvenation for you.

    I am reminded of a saying I once heard, “Struggle is the meaning of life. Victory or defeat is in the hands of God, but struggle itself is every man’s duty, and should be his joy.”

  • Anonymous

    Here’s a community that may be of some interest to you:

    http://www.reddit.com/r/autism

  • Abdullah

    None of us will leave this world without being tested. I would like you to remember the hadith of the blind man who came to Prophet sallallaahu alaihi wa sallam and asked for a supplication to have his sight restored. The Prophet prayed for him, but he advised him first to relinquish his request! It is better to pray to Allah that he allow one to bear the hardship, than to ask for its removal.

    As a thought which may or may not be useful, I have been told that regular ‘cupping’ may help a little.

  • friend

    As a fellow parent of a child with autism, I have felt all you express is your article- the feelings of helplessness, the feelings of disapointment in unanswered prayers, the exhaustion and the wondering, ” how much longer I can go on?” Although I am not of the same faith as you, I too have questioned why my daughter must suffer and if I have not done enough for her or for God that she must continue to suffer.
    I have been blessed, however, with a strong faith and have learned to rely on my God to strengthen and comfort me through the most difficult times. I choose to believe that God is NOT punishing my daughter or our family, but is with us through these trials and it will all bring about good.
    I am sure that you love Daanish with all your heart, just as Alah loves you. I pray that you will find peace in knowing that your love and your best efforts are all that are expected of you.
    Thank you for sharing your story.

  • Anonymous

    Salaamualaikum all.

    Thank you for your kind words and your du’as. It’s what I need, it’s what Daanish needs. I wanted to be clear on one thing – because I think unfortunately my post is giving the wrong idea on something. I do not view Daanish’s autism as a punishment by any means. I never have. Sure, I have played the “Why him? Why me?” game. But I do not view this as a punishment. I do accept Allah’s wisdom. Do I want to scream sometimes when people quote to me “Special children for special people” or “God chose you because you are strong and are special to raise Daanish” – sure I do! I’m only human. But I do believe that Allah knows best, and His reason for giving me my son is Right and Beautiful. Daanish has changed my life (and my other children too) in ways I couldn’t imagine, and I am thankful for that.

    That being said, I still would cut off my right hand for his autism to never have happened. But oh well. My struggle, my Ramadan struggle, has to do more with the weakness of my prayer, niyyat, and faith in Allah’s will. I go up and down, and have trouble doing believing in my prayer for Daanish. I feel like if my faith were stronger, if my prayers had more heart behind it, if my niyyat were stronger, if I believed harder, perhaps things would change. I wonder at times, if I believed more, with real sincerety and full faith, would my prayers be answered? But Allah Indeed knows best. And I hope He forgives me for all that times my faith ebbs and flows.

    It’s just hard, and at times overwhelming, and for me, as a journalist and writer, to be able to write it out and release it is what I have to do to move through.

    I also wanted to emphasize that this post came from a very dark day (and we go through them often enough here), but we have many many good days and we are blessed in many many ways – a good home, good family support, 3 wonderful children, my two “typical” kids rally around their brother in way that is so beautiful. We are truly blessed with a stable home, and that we have been able to, through the years, pursue so many therapies and things for Daanish.

    Anyway, thank you all again, keep us in your du’as – it’s what Daanish and I need more than anything.

  • Spud

    A very moving post. You sound like such a wonderful mother. I saw a very interesting lecture on why bad things happen to good people . It is rather long, but the second part in particular reminded me of your difficulties.

    http://vimeo.com/23633373

    Have a wonderful Ramadan.

  • Kouthar Muttardy

    Dear Dilshad,
    As a mother of a child with Autism, I sympathize with your struggle, and I’m sure that my son Issa can sympathize with your son. I remember the day that I told Issa that he has autism. We were lying in bed at night and I told my son: “Do you know where we’re going this weekend?” He said: “Where?” And this utterance alone is a blessing, because until he was 5 Issa was nonverbal. I told him we were going to the national walk for autism. He asked: “What’s autism?” I explained the condition in terms I thought he could understand. He looked up at me and said: “Mama, I think I have autism.” His clarity and introspection were more than I could ever have expected. With tears in my eyes I responded: “Yes, Issa, you do.” He said: “Is that what’s wrong with me? Is that why I act the way I do?” I had no words, and a long silence ensued. Issa said to me: “Mama, why did Allah give me autism? Why did he do that to me? Why can’t I be normal?” I explained to Issa that Allah gives us all tests in our lives, and that this is his. But Issa is blessed. He is beginning to understand his condition now, and he’s beginning to cope with the melt downs. Every now and again he asks me questions about autism, and we set goals for his improvement. Some days are great, and some just aren’t. I have lived and breathed his condition for past 10 years, and my heart reaches out to you and your family. I will pray for Daanish as I pray for Issa. I will pray for them to have happy, peaceful, and fulfilled lives. You’re a fantastic mother, and your struggles are completely normal, and human. May Allah give you strength, patience, and fortitude.

  • Karimans1

    Oh God! I pray for those families affected by Autism! This article was me 100%…my son struggles with it too…

  • Lady_maryam92

    Asalaamualikum sister,
    I cried while reading this, thank you for giving us insight on your life raising an autistic child.
    I do not believe that its the weakness of your prayer that is preventing your dua from being answered. Allah (swt) knows best what is good for you and your son, and maybe He is answering your dua, slowly.
    Time heals most, and also gives us patience to be stronger. And like you said, this is your struggle, maybe its just not time yet for it to be over? I will keep you in my duas, and stay strong because you are performing beautifully, Masha’Allah. <3

  • Hadi

    I think the majority of those that have posted comments are missing the point of this very emotional and moving story of struggle. As Dilshad stated the intent is to share her struggle with, “her deen and iman.” We all go through this struggle for things that while seemingly important to us are rather petty when compared to the struggle of others. It takes a lot of courage for someone, and particularly a Muslim in a public forum like this, to admit to their questioning of God. We should be providing her and he family with affirmation that what she is going through is not an anomaly or an abortion and that all of have such moments of questioning regardless of our faith.

    I could be wrong but if you examine the trials and tests of the Prophets and Messengers of God, they received God’s test directly onto themselves. So what I question is why is it necessary to put a minor child through such a thing as a “test” for that child’s parents?

  • Ayesha

    Being mentally ill myself, I am Bipolar ( along with a few other things), I have always told myself that this is what Allah gave me when my destiny was written. It is hard to live with, sometimes to function and people sometimes treat me badly. Daily things are difficult. But maybe…I am here to help others like me. To help awareness? I can’t let my disorder rule my life. I am studying to be a psychologist. Maybe one day your son can help too…Just make sure you don’t treat him as a burden. My parents did that to, while my father seemed ashamed. It made things harder for me and hurt very badly.

  • Minaret Muse

    Salaams,
    Many thanks for sharing your experience in such a sincere and honest way. Dark days can cast long shadows. Sh. Hamza Yusuf did a talk called “17 Benefits of Tribulation” based on a work by a 7th C scholar, which I found v.useful and reassuring on the question of ‘why?’.

    You can read a review of the CD here:
    http://sidramushtaq.wordpress.com/2009/02/04/17-benefits-of-tribulation-shaykh-hamza-yusuf/

    And you should be able to listen to it here:
    http://sheikhynotes.blogspot.com/2008/03/sheikh-hamza-yusuf_16.html

    My duas are with you and your son. Peace.

  • Anonymous

    I just paíd $20.87 for an íPad 2.64GB and my boyfriend loves his Panasoníc Lumíx GF 1 Cámera that we got for $38.79 there arriving tomorrow by UP S.I will never pay such expensive retail príces in stores again. Especially when I also sold a 40 inch LCD T V to my boss for $657 which only cost me $62.81 to buy.
    Here is the website we use to get it all from : http://BidsBit.com

  • Samyia Ahmed

    salam mualaykum Dilshad too am an autistic woman with 5 autistic children who were all diagnosed as being moderate to severe. Islam saved me in many ways subhanna Allah and up to when I found Islam i was quite severe n my presentation also. Managing autism is difficult but not impossible it means following a very strict if not even extreme lifestyle that our beautiful Religion teaches us. Teaching a child with autism requires a different approach but they can learn and being calm and predictable and setting up the correct environment is essential for development. please contact me if you need advice insha Allah.

    • kiran

      samya i have twin boys with autism(moderate 2 severe)they are 3 yr old ,i want ur advice pls contact me my email add is(wshammas@yahoo.com)

  • http://hayaah-thevoicethatlearnttospeak.blogspot.com/ Hayaah

    I read and liked all the comments, as I let my heart cry out post reading your beautifully written post. Most of the things that could be said, have already been said, therefore I’ll only add… in the most testing of situations when my choice is to scream, cry or control myself, I find it really useful to chant to myself incessantly:

    HasbeyAllahoWaneymulWakeel – Allah swt is the Best of Planners and He Alone is Sufficient for me…

    AudhobillaahiminashaytaanirRajeem BismillahiRahmaaniRaheem – and you know what that means… it is the darned shaytan who makes us doubt all things good, our patience, our prayer, and it is from him that we at such times need to seek safety.

    The above two have proved helpful to calm me down, and pacify me. InshaAllah, if you haven’t used these two in dhikrs, I hope they help you – Ameen.

    ~ FiamaanAllah

  • Saad Abd

    Dear Sister!
    Let me disclose to you a secret.
    It is not a secret in a real sense but due to the clouding of mind in this world it has become a “strange secret”

    Allah says in the Quran: You people have in your mind the betterment of this world and Allah wants for your the betterment of the eternal life.

    The above quoted translation of the verse may look simplistic and even confusing to a grieving and afflicted mother.but infact it has a very real meaning if some one wants to understand.

    These days the world is filled with things of sensory pleasures and sins.Leaving aside the KAFIR (Those who reject God and day of judement after knowing the truth) even the muslims and the momins cannot resist the seductive temptations and dazzling fantacies which this world has to offer.It is very difficult for these momins that in such a spiritually distructive enviornment they could develop or maintain a meanigful relationship with the All mighty Allah.

    Every effliction in a sense drives a momin away from these NAFSI temptations of this world and as a result they try to become closer and closer to God.And that is what is solely required from a momin.

    If common muslims were left to connect to God via there own efforts it would almost be impossible keeping in view the current world and its enviornment so such afflictions work as a catalyst to bringing and keeping people on Sirat-e-Mustaqeem.

    Our Prophet (May peace be upon him) is our role model for this life ,none of his male child survived .You could not imagine how tough it could be for a parent in thos days of tribalistic arabia to withstand such a thing .As people around would not only try to mock but would also say that Mohammad(May peace be upon him) is issueless(childless) and tomorrow there will be none to carry his name.That is where Allah send his revelation
    Surah kausr” ..”lo,,(It is not You) but your enemies whose name shall be wiped out.

    In the same surah ,Tha Prophet (Peace be upon him ) was also given basharat of hauz-e-kausr and Prophet (Peace be upon him) was so happy while he was telling about this Surah to his companions.

    Now what we can learn from the above is :It was far easier for God to give Prophet (Peace be upon him) a male child even the Prophet (pbuh) may have had Dua for it and Inshallah it would never have been denied .But Allah knew and the prophet (PBUH) had perfect faith on what Allah knew .

    The perfect wisdom of the Almighty chose to to pass his messenger through a process (Which Allah deemed necessary) and after passing him through this painful process not only the eternal reward were given to him the shape of KAUSR but even in this world Allah has kept his promise and now every House hold in in this world not only knows his name but there are millions of muslims who eagerly love there prophet ,say drood for him and even love him more then there own selves.

    That is How God system works.Allah is perfect ,you are his creation and ABd ,Know that he has your best interest in his mind.Know that he loves you for your weaknesses and supports you in moments of weaknesses .

    Like you want to your child to take care of himself and manager himself that is your earnest and sincer wish for him ,Like wise,Your Allah wants for ,you his Abd, to be sucessful in the AKHIRA.
    No child can learn to walk until first taking a few tumbles if parents hold there childrenr for fear of never tumbling they will never learn to walk.Process is necessary ,without process no seed can grow to its potential.

    Wallahu aalim o bissawab.