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Bittersweet: A Spiritual Perspective on Special Needs Parenting

Zeba Khan

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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 freaks out if you laugh 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, 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 Allah than I had in my entire life before that.

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 sabr, 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 dhikr, 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 Jannah is beneath his or her mother’s feet, but in some cases, a mother’s Jannah may be beneath the feet of her special needs child. And perhaps the father’s too, Allahu Aalim. 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.

We have been told that a child’s Jannah is beneath his or her mother’s feet, but in some cases, a mother’s Jannah may be beneath the feet of her special needs child.

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 Shaitaan 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 Rabb, 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 rizq 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 Messenger of Allah (sallallahu `alayhi wa sallam) 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 taqwa 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 iman. 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, and sit in Jannah with an eternity of ease to make up for one small lifetime of hardship.

May Allah have mercy on all Muslims, and ease whatever difficulties they are facing, and strengthen their iman and increase them in sabr, and reunite them with their loved ones in the company of the righteous. Ameen.

Zeba Khan is the Director of Development for MuslimMatters.org, as well as a writer, speaker, and disability awareness advocate. In addition to having a child with autism, she herself lives with Ehlers-Danlos Sydrome, Dysautonomia, Mast-Cell Activation Disorder, and a random assortment of acronyms that collectively translate to chronic illness and progressive disability.

99 Comments

99 Comments

  1. Avatar

    Roxann Breazile

    July 21, 2010 at 1:37 AM

    This article is lovely…honest and heartfelt. So glad “Peterbrownpsy” tweeted it. Blessings to you and your family.

    • Avatar

      mahani talib

      August 9, 2010 at 8:27 AM

      My autistic grandson is now fifteen. I have been raising him since he was two weeks old. And, every minute has been a delight, full of blessings. His future!
      Truly, he is the love of my life.
      I also care for my eldest son, who is bi polar. Their future? HASBIALLAH!
      May Allah reserve abodes for us all, right by His side in the hereafter and beyond.
      I have learned not only to bear, but also to take pleasure in every moment of my life with my first son, and first grandson.
      I love them without qualification, and I love my other children and grandchildren likewise.

      • Avatar

        Anon

        September 21, 2010 at 3:02 AM

        Mdm Mahani,

        I’d like to get in touch with you via email if possible, my brother have bipolar too and I’m trying to understand more about his condition as well as write about it. As I read this inspiring entry here, stumbling upon your comment is a good coincidence, I’d appreciate it if you could email me at msanonemous@googlemail.com

        thanks :)

        and Abez, thank you for this sharing your inspiring thoughts with us, made me look at things, through a different ‘lens’ on this issue.

  2. Avatar

    Hassan Adnan

    July 21, 2010 at 1:42 AM

    JazakAllah, SubhanAllah May Allah strenghten you in your motherhood and the consequent Iman in Allah SWT you are gathering from it. SubhanAllah if we realize this one bit that Allah SWT Loves us so much, it would make our lives and the hardships in it so much easier to pass. And if realize this one bit that Allah SWT is all-knower, we would certainly humbly submit to all difficulties of life knowing that there is much good in it for me that only Allah SWT knows of. I pray for all mothers who are doing Jihad against their Desires for their Children. How beautiful this system of Allah SWT is, that it is only the mother who can go to such extent for their children, imagining the Children that are brought up in such motherhood one can only expect them to be the sweetest fruit to this life. The Seed of Love one mother sows is reaped by many generations, for child has now learnt the love he has to give to his children when he grows up. SubhanAllah.

  3. Avatar

    abu Rumay-s.a.

    July 21, 2010 at 2:32 AM

    May Allah, The Exalted, enter you and Khalid and your family into the highest level of Paradise near Him and the prophets. ameen.

    After reading your article, the tears cannot stop flowing and you have humbled us by your gratitude and patience to Allah ta`ala..truly, I understand this to be one of the highest ranks of eeman, may Allah keep you and your family steadfast upon His path and increase you in knowledge, faith, and every goodness…ameen..

    “Allah does not decree something for the ‘believer’ except that it is good for them” (meaning of a hadeeth)

    • Avatar

      sabirah

      July 21, 2010 at 4:42 AM

      ameen

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  5. Avatar

    Ibn Muhammad

    July 21, 2010 at 6:24 AM

    Salam Alaikum Sister Abez,

    Jazakallah for the extremely moving and heart-softening account of your son’s condition and the correct way to approach it from an Islamic perspective.

    May Allah (swt) reward you, Khalid and your entire family abundantly for being patient and steadfast through this sever test. I ask Allah (swt) with His Most Glorious names to have Mercy on you and your family, and I will be making special dua for you and Khalid inshaAllah when I go for ‘Umrah this Ramadan. Dear sister, never lose hope and keep praying to Allaah and seeking His Mercy; Indeed He (swt) is the Most Merciful, the Ever-Merciful. I read somewhere that Imam Bukhari (rahimahullah) developed blindness in childhood and his mother prayed for him non-stop for a long time until Allah (swt) cured her son and he went on to become the most famous scholar of hadith ever in our history.

    Your story will have made a lot of people cry and I ask Allah(swt) to reward you for your eemaan and sabr and for sharing this with us to allow us to be grateful to our Lord for his infinite favors and to develop true sabr when faced with trials and tribulations.

    May Allah (swt) grant you and your son the highest ranks of Firdaws in the company of the Prophets, the Shuhadaa, the Siddiqeen and the Saaliheen, and what a beautiful companionship that is. Ameen.

    • Abez

      Abez

      July 21, 2010 at 12:11 PM

      Ameen, Ameen, Ameen. JazakAllahuKheiran, and may your Umrah, and all the duas you make in it be accepted. :)

  6. Avatar

    Nadia

    July 21, 2010 at 6:26 AM

    Have we ever wondered why does Allah gives us children like this? …..Because he has given us patience in abudunce to weather this storm, Alghamdoelilah.

  7. Avatar

    hayat

    July 21, 2010 at 6:43 AM

    may allah cure khalid and give you a place of sabirinn in jenna inchalla . i understnad your situation you always remember that there are those who have worst situation than this. i hade a nighbour who have one 7 years old with heart attack just die after surgery and one chile paraliz and when i had some worry in life i just see her or talk to her and i feel strong . her daily life is full of difficulty. her son use to tell her i do not want to do surgery please mam and the doctor promise her that there is hope and she ignore that and now it is not his death it is regreat that is killing her. she lost hope in this world bec she is not muslim. we muslim had stong faith that we know everything happen by allha will and we know what we will have after bec of our sebr. so this made us more stronger.

    i am not a doctor or alim but try reading or putting cd before bed quran and every night warm a little pure olive oile and give him massage while reading ayatul kurs while tuching his head every part of his body read fatiha more open suratu nas felek iklas every day if u can when he walk up and before bed. and i will pray for khalid inchalla to cure him. Allah subhanehu wetala can change everything if he wish. sorry about my english is not good. try to understand and lots of sedeka will help. even if it is 1euro .

    and ya allah give us sebr and jenna for all muslim around the world. we are facing difficulty .
    the good news is .this is dunya any way. it is temporary. we can deal with it. with sebr like our best deen al islam tougt us. and proud to be muslim.

  8. Avatar

    muslimah

    July 21, 2010 at 7:08 AM

    parents, regardless of their kids normalcy or lack thereof worry abt their future..Allah is up there to take care of us. I’ll keep your family in my prayers inshaAllah.

    • Avatar

      muslimah

      July 21, 2010 at 7:45 AM

      i dont mean to invalidate your sentiments but i think your son is lucky to have a mother like you. I have noticed that when kids suffer from some form of disability, parents tend to pay more attention to them than they normally would. Alhamdulillah i dont have any physical disability but somewhere in my heart i feel my parents never understood me. Maybe if i was born deaf or blind, my parents would have paid more attention to my feelings. Dont get me wrong, i love my parents and i know that they will never do anything to hurt me intentionally, but deep down, there’s this little girl in me who wants to open up to her parents and knows she cant. alhamdulillah ‘ala kulli haal

      • Avatar

        Umm Yousuf

        July 21, 2010 at 10:10 PM

        Unfortunately, you’re right…at least with me. Some parents need to be reminded of the importance of their children’s existence. Of course, I loved them and tried to be a good parent but many times I would give in to my emotional stress and just do what would fix a problem right then through yelling and spanking…even though deep down I felt it was sooo wrong. When Yousuf got sick I had no choice but to be patience because not only was he just acting like a child but a sick child and me being the one person in the world who can give him the best support, love and patience….his mother. Then I realized that healthy or not it’s still equally as important. This is why articles like these are very much needed. It is a reminder to all of those with healthy kids (and sick kids) to pay attention to the responsibility and importance that a parent must remember. What a child says about his parents when they get older reflect greatly on the manners of the parents…and we will be asked about this.

    • Avatar

      Ich

      November 7, 2016 at 2:40 AM

      i have a 4 year old with Autism. And yes my main worry is what is going to happen when I die? I am not at that place where I believe Allah will automatically do well for my child once I die. There are so many orphans in Palestine, in syria in iraq, who’s parents have been brutally murdererd. And are these kids now living a protected by Allah life? Recent trips have reviewed that is not the case.
      Ofcourse what else can we do. So we hope Allah will keep them safe after we die. But there is no such guarantee anywhere. And if you look around muslims in the world you can see that it is not how this works.
      So I have no solace in that kind of thinking.

      I really don’t mean to sound like a pessimist. But really we don’t really know what will happen to our kids.
      Our religion an teachings talk about jannah for having gone through trials so I have solace in that. But that he will be OK in this world after I die, no I don’t know. And I have to live with that pain in my heart and die with it too.
      May allah give us all hidaya.

      Thank you for sharing, I share most of your emotions. I wish I could rely on Allah again for my sons care after my death, but I don’t see it.

  9. Avatar

    Zayna

    July 21, 2010 at 7:58 AM

    Many blessings to you and your family. It takes a lot of courage to write something like this and every word was heartfelt. My eyes welled up reading it, and please don’t take it as pity, you are a strong woman, with astounding Iman. You just tugged my heart, and InshaAllah, you and your family will be in my prayers. Life as a way on unfolding itself, and believe that everything placed in front of you will work out. God Bless.

  10. Avatar

    Amatullah

    July 21, 2010 at 10:08 AM

    I’m at a loss for words sister Zeba. Jazaaki Allahu khayran for such an amazingly heartfelt and beautiful article. ‘Ajaban li-amril Mu’min. I ask Allah ta’ala to bless you and your family in this life and the next, purify you through this trial and make you among His Awliyaa.

  11. Avatar

    sister

    July 21, 2010 at 12:04 PM

    Assalamualykum dear sister,

    May Allah reward you and your family immensely in this duniya and in aakhiraa.Mashaallah you have strong tawakkul and imaan.Allah tests more whom he loves more. So terrified of future yet complete trust in Allah.Hasbunallahee wa nemal wakeel.

  12. Abez

    Abez

    July 21, 2010 at 12:22 PM

    I agree very much with the comments left- Allah does everything for a reason, and there is nothing but good in our situation. We have hard days and we have easy days, but we try to always have good days. And we’re not perfect, but we’re trying.

    The decision to be at peace with Allah’s will is a conscious one to make, and whatever the situation, it is the only way to bring peace to a heart in turmoil. JazakAllahuKheiran for all the duas and kind words, and may Allah bless us all with patience and understanding and acceptance of His will.

    :)

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  14. Avatar

    Naureen

    July 21, 2010 at 3:13 PM

    I barely ever cry reading articles/news but your article is so real, so humbling mash’allah that the tears are certainly flowing as I type this.

    I wish you all the best in your efforts. I’m so happy for you that you have come to terms with your situation and decided to be content and thankful! I’m so touched. I’m speechless.

    May Allah gather you with your son in jannah. ameen.

  15. Avatar

    Safiyyah

    July 21, 2010 at 7:26 PM

    Subhan’Allaah. Thank you for a beautiful post.

  16. Avatar

    Farweez

    July 21, 2010 at 7:41 PM

    Subhanallah. After reading your article I’ve been sitting here in front of my lap top wondering what to type. cuz this was not only a very moving an inspiring article but it definitely was a wake up call to me to say that I have been living a life of luxury yet i have not been thanking Allah the almighty enough for the favors he has bestowed on me. You remind me of how beautiful the life of a Muslim is. May Allah make it easy for u sister May he reward u with the highest Jannah and may he endow me and bless me with the patience that he has blessed u with. Innallaha Ma’as Saabireen

  17. Avatar

    Perspective

    July 21, 2010 at 7:51 PM

    Thank you sister for writing such a touching and honest piece (and thank you MM for publishing it), I was sincerely moved by what you wrote. I have very little personal experience with special needs children, but this article opened my eyes to the level of sabr and unfaltering faith in Allah (SWT) that one must have in order to do what you are doing. I am no one to pass judgement, but I feel that there must be a great reward for parents such as yourself that are tested in this manner, and prevail through their faith in Allah (SWT).

    We all have our individual tests, but I have often wondered why some people are faced with greater difficulties than others. Of course Allah (SWT) knows best, but for many, knowing this does not make their hardships any more bearable. I commend and admire you for your ability to grow spiritually through this experience, many people (including myself) would not be nearly as strong. Reflecting back on hardships in my own life, I’am ashamed to say that some times my faith wavered during those times rather than grew. Next time I am confronted with any difficulty, I will try to remind myself that Allah chose that difficulty for me because He knew that I was capable of handling it.

    May Allah bless Khaled and your family in this life and the next.

  18. Avatar

    Umm Yousuf

    July 21, 2010 at 9:54 PM

    Beautiful article, masha’Allah. May Allah (swt) make this as source of strength and a way to benefit others who have similiar struggles. Though my son is a bit different having cancer and not a disabilty, I can still relate. In the beginning it is very tough but then you find a way to turn the situation around into something positive. We do this out of trust in Allah as well as deep love for our children, subhan’Allah. The connection I have for all mothers with sick children or even special needs chidlren is so strong. I feel when I make dua for them or help in any way it’s as if I am doing that for my own son. Maybe it’s bad but I also have a special love for them as well. JazakaAllah khair for such a wonderful article and reminder of the responsibility of being a ood parent!

  19. Avatar

    Arif Kabir

    July 21, 2010 at 10:39 PM

    Khalid’s care is with Allah. His rizq 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.

    SubhanAllah….This statement really struck home. May Allah (subhanahu wa ta’ala) give you and your family Jannatul Firdaus for all of the hard work throughout the countless days and nights that you had to pour into Khalid.

    Very inspiring post. Please continue on writing such powerful pieces, Insha’Allah.

  20. Avatar

    ummmanar

    July 21, 2010 at 11:19 PM

    Assalam Alaikum sis.
    Jazaakiallahu khairan for such an amazing ,heartfelt real article. As I am reading this my eyes are flowing with tears and I can’t stop thinking about your strength and iman to be able to write. I really admire you for your love and patience, Khalid is one lucky boy to have such a loving and faithful mom. Personally this is a learning article to all of us how to be thankful to Allah (SWT) and accepting his wills with seber. SubehanAllah my imman is so weak as I went through different trials instead praying and accepting I was complaing to allah why me? but by reading this allhamdulilah I learn to be thankful.I will pray for khalid and you inshallah.May allah give you saber, iman and strength and grant you and your family the highest jenatel ferdus next to prophet mohammed salellahu alihuwaslem.

  21. Avatar

    carimah

    July 22, 2010 at 12:27 AM

    As’salaamu’alaykum

    Masha’Allah and shukran for sharing.
    It is a reminder to ALL of us to be patient with our children and to put our and their lives in Allah (SWT)’s care.

    Much love and respect

  22. Avatar

    Cucumberr

    July 22, 2010 at 12:52 AM

    SubhanAllah, this brought me to tears. May Allah raise your ranks in akhirah and enter you, your family, and all the true believers into Jannah bi ghayri hisaab. Ameen.
    Love all your articles, please continue to write! :)

  23. Avatar

    Ayesha

    July 22, 2010 at 9:10 AM

    The only ayah thats in my mind after reading this is :
    ((..Innama yuwwaf-al-sabiroon ajarahum bi ghairi hisaab))…
    …Only those who are patient shall receive their rewards in full, without reckoning.” Surah Zumar
    the day everyone will be despearately waiting and fearing their destinantion …the “sabiroon” will have the honour of entering jannah without Allah azzawajal …taking their deeds into account…subhanAllah!!

  24. Avatar

    MK

    July 22, 2010 at 11:20 AM

    Assalamu alaikum, dear sister…..you have touched a raw nerve I myself have. The lessons you have learned are ones I have been trying to teach myself for the past two years, having one child with a rare genetic disorder that causes global developmental delay and another whose complex medical situation led to significant delays as well…….they have made good progress over the past few months Alhamdulillah…..the only thing that’s pulled me through again and again is telling myself repeatedly that we are in this situation because Allah knows we are strong enough to handle it even in times when we may not know it ourselves……when people tell me, ‘I don’t know how you do it’ , how do I tell them it’s not me? That if Allah has willed this challenge on us, then He will see us through it as well, Insha’Allah.

    Jazakallah, you have opened my mind to this other perspective of their Akhirah, I honestly had never thought about it that way. We worry endlessly about him reaching the milestones ‘normal’ kids are expected to reach and realise we still have a lot to get used to about this different kind of normal we deal with from here on. We have learned to be happy about his achievements as they stand on their own and not in relation to what other kids his age are doing. We have learned to respond intelligently and not emotionally to people who look on piteously at our situation. (I can’t stand the pity!!!)

    Jazakallahu Khairan. You have given me plenty to think about.

  25. Avatar

    Lubna

    July 22, 2010 at 2:30 PM

    Beautiful…anyone can forget about all their hardships after reading this article. Hats off to you Mom.

    Jazakullah Khair for sharing this … not to mention there is no one above Mom except Allah.

    Take care

  26. Avatar

    Salma

    July 22, 2010 at 3:02 PM

    Salam dear sister i can absolutely relate your story i have a one year old son Kabir who was born with Microcephaly also a neurological disorder where his brain stopped developing while he was still in growing in my stomach,He has alot of seizures and was just recently diagnosed with Diabetes Insipidus and he got a G Tube put in for feeding , he can’t sit ,roll.crawl or walk it has being a struggle especially having three other boys that are older that also need me.Alhamdullilah my faith and prayers plus prayers from my family keep me going
    .
    It is not easy but the little progress you get from all the hard work we do with them is very fulfilling ,Alhamdullilah.for sabr.

    • Avatar

      abez

      July 29, 2010 at 2:02 PM

      Salma may Allah bless you for your dedication and increase you in faith, and fill your heart with the hope and joy of knowing that you will meet your son one day, InshaAllah, free from handicap or illness or imperfection of any and every sort, InshaAllah, from the Mercy of Allah. >>>hugs<<<

  27. Avatar

    Junaid

    July 22, 2010 at 5:09 PM

    Assalaamu alaikum

    May Allah make it easy on you, and your family. May allah give Khalid Sakina and warmth of love, affection and acceptance.
    Our daughter of 2 has recently been suspected of being in the ASD range, (she exhibits some but not all ASD traits, does not comprehend, communicate or gesture and is terribly afraid of peers touching her or playing with her) it is such a hard test to accept the decree of Allah when it effects someone whom you hold dear. It is a lesson in patience, It is a lesson in emaan and how to remain steadfast, and it is such a humbling experience, it makes us realize every moment the blessings of Allah. It has personally taught me what it means to Love Allah and his Messenger more than anything. Inshallah, the reward is with Allah and it is only to Allah we turn.

    • Avatar

      abez

      July 24, 2010 at 2:58 AM

      SubhanAllah, you’re blessed to be getting an early diagnosis- your daughter has hope, Alhamdulillah. :) Get her into an intensive ABA therapy program, and don’t listen to anyone who wants to put her on drugs to ‘control behaviours,’ because those are quick & easy & harmful solutions.

      You’re family is in my duas, and if you have any questions or you or your wife just want to talk to someone who’s been there, please email me- just contact MM and they’ll put you in touch w/me. MaÁssalam!

      • Avatar

        Junaid

        July 26, 2010 at 3:07 PM

        Assalaamu alaikum

        Jazakumallahu khairan, Inshallah my wife would love to get in touch with you.

        We have scheduled an EI test tomorrow, and most probably a full test for a complete diagnosis sometime in the coming weeks.

        Jazakumallahu khairan once again.

        • Avatar

          Junaid

          July 27, 2010 at 11:43 PM

          Alhumdulillah, we just came back from the EI. The complete report might take a few days, but the initial assessment conveyed to us is that my daughter does not fall on the ASD. She has a language delay but not on the ASD. Alhumdulilllah.

          In all this, What we experienced is that those whom we consulted from amongst our Muslim social circle viewed our daughter in a different light, ‘the look’ as I call it, and that was something unexpected. May Allah make us from those who care, understand and show compassion in the best possible manner.

          Jazak Allah khair Sr. For your experience gave me strength. Though we have a set of twin boys after our daughter, she is my favorite and is a blessing.

          We tried to reach you through a MM associate, have not hear back from him yet.

          wassalaamu alaikum

          • Avatar

            abez

            July 29, 2010 at 2:04 PM

            My apologies for being out of touch brother Junaid, and I share your relief in hearing that your daughter doesn’t fall on the ASD spectrum, Alhamdulillah! If you, or anyone else in this thread, would like to reach me, please email me at zhkhan at gmail dot com

      • Avatar

        Maro

        April 25, 2012 at 2:36 PM

        I will also contact MM I hope you dont mind. I would love to have a Muslim sister friend who is in my situation. Most days I am ok with it, but some days I just totally despair. My child has a rare gentic syndrome, the challenging behaviours and communication problem are the same as autism, but some people think its due to deafblindness, because on top of autism, my baby is also deafblind, cant smell, and has many other medical problems that are requiring lots and lots of surgeries. He is tube fed. we always thought we were going to name our second son after my father, but when I got pregnant, I was so inspired by the life and trials of Ahmad bin Hanbal and I prayed for a boy who would be as pious and knowledgable as him. I prayed for a Hafidh of Quran and a Scholar of Islam. Someone who is completely detached from the Dunya and only focussed on Akhira. So we named him Ahmad. My son has limitations / absence of each single one of his senses. everything that connects him with his environment is impaired. Nobody could be closer to Allah than him. I usually thank Allah for him, but sometimes I feel overwhelmed with sadness that I myself prayed for him to be this way, so ill. Some days I really need someone to remind me in Allah’s mercy. I look forward to talking to you, I’ll leave my email with MM…

    • Abez

      Abez

      July 24, 2010 at 3:12 AM

      Inna lillahi wa inna ileihi rajioon. May Allah have mercy on us all.

  28. Avatar

    Sakeena

    July 23, 2010 at 12:06 PM

    MashAllah thank you for writing this, it’s something close to my heart too. I’m a behaviour therapist working with Autistic children and they are all my beautiful, amazingly complex babies. Every step you take for granted in a typically developing child is a massive milestone, you really appreciate the beauty of Allah’s creation.

    I’ll never forget reading an article by an alimah who called her Autistic child ‘her jannah baby’. SubhanAllah, look into the eyes of a person with special needs and remember that their eyes are guaranteed to see jannah..we should hold onto them tightly and keep them close to us, not shun them or be wary.

    May Allah swt give your family sakeen and sabr in dunya and reward your family in the akhirah with being guided into paradise with your jannah baby, Ameen.

  29. Avatar

    Nour

    July 23, 2010 at 7:09 PM

    As-salamailaikum Sister,
    May Allah continue to give you sabr and hikmah with all the hardships you face daily. I am also a special needs parent. My daughter was diagnosed with Down Syndrome two weeks after she was born. At first my favorite pictures of her were the ones she had before we got the diagnosis. It was just a happier time. In my face I didn’t have raw pain, fear and anger but instead that motherly innocent blissful glow you get when you hold your new child. After the diagnosis, instead of thinking of her all I thought about was myself and how my life and the life of my husband and other daughter would change. Your fears of money, care, school, job, siblings and social life all hit home to me and moved me to tears. My family would just tell me not to worry too much about the future. Just live one day at a time, but we’re moms so we can’t help but worry about the future. They too were ignorant. They’ve made ignorant comments and they are my FAMILY so what do I do about others?

    My child wears her diagnosis on her face. My fear was her never making a friend. People staring at her funny. Even though alhamdillah her facial features are mild we all want our children to be included. As a Muslim with a child with Special Needs, I felt really lonely and I know you do too. I still feel lonely. I don’t know any other Muslimeen with DS left alone a special need. We are an exceptional family with an exceptional child. Maybe even a point of interesting conversation at a dinner party. But nobody so far has asked me how I’m dealing with it. My daughter is almost a year. Yes it is overwhelming but alhamdillah allhamdillah Allah has given a moderately faithful woman like me the hikmah and patience of 10,0000 of the most pious Muslims out there. She is the light of my life and honestly Allah protected me from a superficial life. She gives me direction.

    One point that hits a soft spot for me is the “jannah baby” comment. I never ever appreciated a comment from well-intentioned people when they said that my child is my “ticket to jannah” and that I was so blessed and lucky because that’s not what I’m thinking. It is not fair for my daughter to say that, and again that is making our mothering directed toward our selfish desire to seek jannah. Our children with special needs are WORTH our UNCONDITIONAL love, no matter what reward we may or may not get. I hope other parents see that special light I get when I hold my daughter, and it is not based on sympathy or fear but pure love.

    Thank you again for sharing your thoughts. I know how hard it is to put it down complicated emotions into words sometimes.

    Jazakallah

    • Avatar

      Sakeena

      July 23, 2010 at 8:07 PM

      The intention on the ‘jannah baby’ comment should be not that your child is a ticket to jannah for you, but rather that your child is guaranteed jannah..what more can any parent or person want for someone they love. Know that Allah has secured their future in dunya and akhira. It’s important for the Muslim community to hear the voices of family’s like yours and those I work with. Be the pioneers inshAllah :)

    • Avatar

      UmmSakina

      July 24, 2010 at 1:11 PM

      As Salaamu Alaikum;

      Dear Sister Nour – I am a single mother and have 2 children- one of them, my son, has Down Syndrome. He is 11 years old and also the light of my life and of those around him. I fell in love with him the moment I saw him, 5 minutes after that the midwife told me she thinks he has Down Syndrome. I couldn’t see it then, and don’t really see it now. All I see is my son. But when I see other children with Down Syndrome, in my selfish love I think, “Aww, they look just like my son.” lol

      I keep deleting what I write because it ends up being a short book on how great my son is. lol But I really love him and feel bad when I see other parents struggling with their special needs children.

      There have been major hurdles and difficulties – multiple surgeries(including open heart surgery), multiple hospitalizations due to illnesses – so much that every cough or runny nose I worry if we’ll have to go back, and that’s on top of the usual delays and behaviour issues that can go along with the diagnosis. But in all of this, for some reason, the thought never occured to ask, “Why me?” I don’t imagine my son without Down Syndrome because I already find him perfect how he is and know that Insha Allah, in Jannah, he won’t have it so I’ll get to see it then. I just know that I have wonderful little boy who needs more time, help, and care then some other children. But the reward in this life is worth it. Allah SWT knows best what the reward is in the Hereafter, but I have a hard time imagining something more wonderful than hearing my little guy FINALLY call me “mommy” after 10 years!!! :-) Allahu Akbar!

      If you or another sister with special needs children would like to contact me, please let me know. I don’t know if we can publish email addresses here? If we can Insha Allah, I’ll give you mine.

      Jazak Allah sister for the article.

    • Avatar

      abez

      July 29, 2010 at 2:33 PM

      This reply is for both sister Nour and Umm Sakina- And seeing as how you both are DS mothers, I do think you should exchange email addresses. :)

      Nour- your comment hit me, we are blessed that Khalid can “pass” for normal (if he’s holding still and being quiet) but your daughter wearing her diagnosis on her face, SubhanAllah- may Allah protect you from unkind glances and pitying eyes. I see them too sometimes, when I try to explain Khalid to someone for the first time. There’s a change in the face, and a change in body language that implies that the listener is uncomfortable and wondering how to put a bit of distance between us and them. Not that autism is contagious, but having your eyes opened to children who aren’t normal does force a person out of their comfort zone, and not everyone takes it well the first time.

      Alhamdulillah though, I do find that most people are concerned, and caring, and want to know more about Khalid and what his autism means and how they can interact with him better. I try to give people the benefit of the doubt, and treat them all like uninformed but well-intentioned friends. Of course, I’ve had nearly two years of experience as an ‘autism mom,’ so I’m an old hand at doing Khalid’s PR. There are a lot of strangers out there who just wanted to say hi to the cute little boy in the elevator, and when he didn’t respond, they got a documentary from his mom about autism. When we go to play areas, I walk up to the attendants and say “Hello, this is Khalid! He has autism! This is Joy, and she is his therapist and will be accompanying him inside, are you familiar with autism?” *grin*

      I’m sorry that ‘jannah baby’ is a sore spot for you, but I understand that it may mean something different to you than it does to me, likely as well to the woman who wrote it. Calling Khalid my jannah-baby would, to me, be a reminder that this beautiful child is an opportunity for me to earn jannah through patience, faith, and learning to be content with what Allah wills for us both. And, I think it’s far more kind to the child to think of him or her as a jannah-baby rather than as a punishment-baby, or a dear-God-why-me-baby. It sounds awful, but you know there are parents out there who look at their children and see nothing but unfair cruelty, unjustly heaped on them by an uncaring God. Just look at the link posted a few spots above this comment- a Muslim mother killed both of her autistic children. Auzubillah. You don’t have to be happy with the term jannah-baby, but if your daughter is the light of your life, you can praise Allah and call her whatever you want. :)

      (personally, I call my daughter boo-boo.)

      Wow, this is a long comment- UmmSakina- I loved your reply, and I can imagine how amazing it must have been to hear your son call you Mommy after so long- ten years! I only had to wait three, and I was in tears, crying out of overwhelming happiness the first time Khalid called me ‘a-ma. (He couldn’t pronounce the first m, but I knew what he meant, because he climbed in my lap and said ‘a-ma, ‘ug! (Momma, hug!). May Allah bless you with much more joy and lots of happiness, and increase the amazing love you have for your son. Ameen

  30. Avatar

    abez

    July 24, 2010 at 3:05 AM

    Umm Yousuf, MK, Salma, Junaid, Nour JazakAllahuKheiran for all the humbling posts- there are Muslim families out there dealing with Cancer, Down’s Syndrome, Microcephaly, Global Development Disorders and much, much, much more- Allah tests us all for a reason, and though it may be hard to see now, there is good in all things, even those things that seem to hurt our children.

    None of us are alone, Allah is with us, and it’s hard to accept, but He may be saving our children from judgment by exempting them from accountability. Much love and prayers to everyone. I would love to read about your special needs stories, and I think other parents would benefit as well. Even those with “normal” kids can benefit, to increase Iman, awareness, and their ability to empathize with and help other parents.

    JazakAllahuKheiran and Ameen to all of the duas from everyone. :)

    The Messenger of Allah (saw) also said, “The believers, in their love, mutual kindness, and close ties, are like one body; when any part complains, the whole body responds to it with wakefulness and fever.” [Muslim]

  31. Avatar

    Noma

    July 25, 2010 at 10:48 AM

    Assalam alaikum. Sister Abez. I am so glad you wrote this article because I have not seen this topic expressed much from an Islamic point of view.It really gives everyone perspective that there are people out there whose problems extend beyond finances or anything material. My brother, while does not have a specific disorder, did lose oxygen to the brain while my mother was giving birth to him therefore he has a low IQ and does have a mild form of autism. He’s 18 now and mashallah I’ve seen so much improvement in him from when he was younger.My parents worry about the fact that he doesn’t understand the purpose of salat but he will still do the movements of the prayer.I like to see the silver lining in situations like this that we can become even closer to Allah SWT and be reminded that Allah tests those he loves. I will pray that Allah grants your family and all others patience in all hardships.

    • Avatar

      abez

      July 29, 2010 at 1:50 PM

      Ameen Noma, and may Allah grant you the same. :)

  32. Avatar

    Jo

    July 26, 2010 at 7:24 AM

    Assalamu Alaikum dearest Sister

    I read your story word for word and it was like reliving an almost mirrored story to mine. I too have a much loved and adored child with autism in a moderate to mild form but autism just the same. I hated the word I hated hearing it, I hated everything about it….. this was in the early days of it being suggested he may have had it…… I for one was ignorant on the topic.

    When he was diagnosed my husband and I were in denial, this is just another “label” a label on a child that Allah created this way, a label on a child that does not “fit in the square” a label on our beautiful son that we adored who had some symptoms that is on the spectrum. Every time I felt anxious about it I’d read the Quran and it would calm me and remind me that everything is a test from Allah and I had comfort in the fact that Allah does not gives us more that what we can bear.

    Masha Allah my son has improved so much just in the last 6 months, knowledge is power because then we knew how to help him inshalla, but mostly it has bought me closer to Allah and given me more sabr (patience).

    Autism will bring us many challenges and successes inshalla but I know one thing for sure and that is I thank Allah for my son and family and all the blesses he has bestowed on us, but especially that he opened my heart to the perfect deen that is Islam, I am a proud revert to Islam. If it was not for my faith in the truth I know I would have fallen to pieces.

    I am part of a mothers support group with a group of Muslim sisters masha Allah it feels great to be with them. I also go to a support group of Mums through my sons pre school whom most of which are non muslim and the experience is a far cry different I feel for them and do dua for Allah to open their hearts because they suffer so much coz of the lack of guidance and trust in the truth and Allah (swt).

    Truly truly Alhumdullila for our deen.

    May Allah protect all our children in particular those with special needs. Amen

    Certainly no one despairs of Allah’s mercy, except the people who disbelieve. [Quran 12:87]

    Jazakarallah Khayran for sharing your story and may Allah bless you and your family in helping create awareness to this ever growing concern in our industrialized world, so it seems.

    Salam

    • Avatar

      abez

      July 29, 2010 at 1:51 PM

      If it was not for my faith in the truth I know I would have fallen to pieces.

      I fell to bits, and then Allah put me back together again. What a blessing Autism has been for both of us, SubhanAllah

  33. Avatar

    Sakeena

    July 27, 2010 at 3:23 AM

    Salaam,

    I’m an ABA therapist working in England, if you’d like any advice on therapy or diagnosis please feel free to get in touch. sukaynah_g@hotmail.com

  34. Avatar

    Tamara Elassal

    July 27, 2010 at 8:58 AM

    Salam Alaikum,

    Jazakhum Alllah Kheer for such a beautifully written article, it brought tears to my eyes, but not as much because of it’s beauty but for the rememberence of my own pain raising a child with Cerebral Palsey who is now 15. I never knew another Muslim family with a special needs child when he was young, having friends to relate to is also something to be grateful for.

    When we discovered that his CP was a result of a doctors mistake, I only pondered this briefly as I immediately understood that his condition was never a “mistake” it was the will of Allah and he would have been this way no matter who was present (or not present) at his premature birth where his twin brother came out first kicking and screaming, a lovely shade of pink, while he came out a pale shade of grey/blue without even trying to take in air to fill his lungs, his first breath was through “bag recesitation”. He didn’t try to live or breathe and I was told he had “failure to thrive” but medical science kept him alive in the NICU (Neonatal Intensive Care Unit) for the first month until he could live without machines. He was always sweet and special and one of the joys of my life! As his twin excellerated into walking and talking he didn’t take steps until 3.5 and used some signs to communicate until he could talk at 5, he was in diappers until he was 8 and developed epilepsy (as a result of the brain injury) at 9. Now his IQ is around 50, he will never read or write, but ilhumdAllah, he walks and has some verbal skills. Recently we went through a round of seizures with him having about 300 seizures in one week. He begged me to make it stop in between, “Mama, make it stop”, it is the most helpless feeling that I have ever experienced, to watch my child suffer having seizure after seizure, day after day as he becomes weaker and weaker but he cannot sleep because the seizures won’t stop. I wonder “why” at times but I have always believed, as you have said, that he is not “less”, he is not “broken”, he is the biggest blessing that Allah can give anyone because he allows the best in humanity to spring forth! He will always be the perfect Muslim, never having a bad intention throughout his entire life! His mind just doesn’t work this way. He is a beautiful, perfect creation of Allah (SWT)!

    I too fear the day when we will pass away and he will be here without anyone to care for him. Perhaps becomming the responsibility of his twin who is still so connected to him in every imaginable way! SubhanAllah!

    There were times where people would tell me to believe in miracles and to hope for him to get better but there was a day when he was about 3 years old where I became comfortable with exactly who he was and what Allah had given me and I was comfortable accepting Allah’s will for his life (and mine) and that made all the difference, while there was still pain at the “loss” of one of my twins, all the memories of these two little boys that would be like two little peas in a pod and would do everything together, I became happy and content with exactly the way things are through faith in Allah and His infinite wisdom for our lives! The memories I envisioned of two little twin buddies were replaced with two little twin buddies that were not exactly alike but were still just as close and loved to do things together, just in a different way!

    Jazakhum Allah Kheer, again, for the lovely article.

    Tamara Elassal

    • Avatar

      abez

      July 29, 2010 at 1:55 PM

      JazakAllahuKheiran sister Tamara for sharing your story- and now it’s your turn to make me cry. May Allah bless you for your Iman and your patience, and grant both of your sons righteous lives, and when he grants them death, let it be as Muslims in a state of submission, and when He resurrects you, let it be with the company of those you love and in the shade of He Who is testing you. Ameen and lots of hugs.

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  37. Avatar

    Dustin Shramek

    July 29, 2010 at 2:15 PM

    Thank you so much for your honesty. Your motherly love exudes every sentence and really blessed me.

    May God give you strength as you care for Khalid. And may he give all those in your community eyes to see how special Khalid is. He is a gift from God made in the image of God. I am happy for him that his mother sees this so clearly.

  38. Avatar

    Umabdirahman

    August 12, 2010 at 9:50 AM

    Subhanallaah!, May Allah give you endless sabr and shower his Rahma on you and your family ameen.
    I care for my sister who is 23 yrs old and has severe developmental delay and acts and behaves like a toddler and everytime I’m about to loose my mind I remind myself that this dunya is darul bala wal imtahan the world is but a state of suffering and trails. May Allah give us the patience to bare it all and make it with our Imaan.
    Our children and siblings who are disabled in this world will have the upper hand on the day of qiyam, the trails that await us are not waiting for them. They didn’t have their share of this world but this world is fleeing we will leave our wives, husbands,children,work,money everything that is beloved to us behind everything will disappear. They will go to Jannah straight without a trail Insha Allaah.

    Salamu alaykum.

    • Avatar

      abez

      August 12, 2010 at 12:02 PM

      InshaAllah, and may you and your sister be in Jannah together. :)

  39. Avatar

    AbdurRahman

    August 13, 2010 at 4:47 AM

    Alhamdulillah, Allahumma Ameen to all your duas. Please consider reading Surah Yousuf. Insha ALLAH it will only strengthen your Iman even more than it is, Masha ALLAH.

  40. Avatar

    HydTech

    August 13, 2010 at 8:28 AM

    Mashallah, very well written. I would read MM all day if it were articles like these. May Allah help us, make us patient, and enter us into the highest parts of Jannah.

  41. Avatar

    Ananymous

    August 15, 2010 at 4:58 PM

    Well written article. I often feel the needs of special needs children and adults are not addressed in Islamic articles and lectures.

  42. Avatar

    Katie

    August 26, 2010 at 8:33 AM

    Great post. Very touching. You’re so right to say that its hard for non-special needs parents to get it. There are great books out there, like There’s Something About Daniel by author Robyn Stecher, that can help them to get a theoretical perspective, but its not the same.

  43. Avatar

    MommyUmmar

    September 21, 2010 at 6:03 AM

    MashaAllah…thank you so much for sharing this beautiful piece. Raising a son with autism of my own, I am deeply moved by this lovely post. Truly inspiring. I am not sure if i could be as strong as you, but I would do anything possible for my son. Inshaallah…

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  45. Avatar

    Zakeera

    September 21, 2010 at 8:27 AM

    Shukran to all of your’ll..I was slowly loosing it..that is the faith I had in myself and my ALLAh in making it possible for my children to learn, My 12 yr old has ADHD /mild Authism my 9 yr old Dyslexia/Autism and my 3 half yr old Autism/ADD mild, I homeschool them and up until recently everything was going Allhamdulilla, then my mum was diagnosed with cancer and I had to shelve everything to be there for her and my family, in the process I left my 2 bigger children with my inlaws.. unfortunitly they came back to me as different people. My whole life are my children and when I gave my time away from them, everything came down.. I blamed everyone and myself for this…BUT after reading these wonderful articles , I now understand that maybe my children just missed my attention and they were acting out but I reacted wrongly which caused the problem to just get bigger…SHUKRAN to all of your’ll for making me see my error..My children are my life[my husband too] but I have not told them this in a very long time….

  46. Avatar

    Jyoti Khan

    September 22, 2010 at 12:18 AM

    Assalam-u-alaykum sister,

    May Allah accept all your hardship and give you patience and happiness. May He enter you, Khalid and all your family members to a high level of Paradise. Ameen.

  47. Avatar

    gladys christina ewell

    September 23, 2010 at 7:01 PM

    salaams sis.

    I wanted to thank you for putting this up. I understand what you are going through. I have seven children and two of them have Autism. I possibly have a third. the third is being tested now. I know that it is rough but time does get better. You do gain an immense amount of patients as time goes by. You will also see the beauty in it all because the thing about our children is that we learn to appreciate the simple things in life that other people might not take advantage of because Allah has blessed them with what society call normal kids. Well I tell you what my kids special and not are all normal to me. I love them all and they all have there strengths. My oldest who is 18 is Autistic and he didn’t speak until he was around 7 or so and he never slept. He doesn’t really sleep still but he graduate from high school with an academic scholarship and he speaks all the time and has is website and is trying to write a book. I think these kids are great. They teach us soooo much. My other child is 4 and he is Autistic but with him he is very outgoing and funny you really can’t tell until you pay close attention. So every child is unique in there own way

  48. Avatar

    AkhiDanny

    October 12, 2010 at 2:00 PM

    MashAllah, i am glad my wife showed me this article, my daughter has PDDNOS, which is a spectrum of autism. it puts her right on the border of normal and autistic, however she still has her behavioral issues in which some of the disciplinary techniques i have tried are not working. i can never fully understand what is going on in her brain, i do know however that she Loves her mother and myself. She loves being muslim Alhamdulilah and is always eager to learn.

    This issue with her though makes things harder on my relationship with my wife. Especially us both being reverts we have lots to learn. but Alhamdulilah, we are learning well…Allah has given us patience and understanding as now we dont get upset, or as upset when she acts up. we jsut redirect her and find other things to grab her interest. we have now chosen to homeschool her for many reasons. Mainly because her speach is really delayed and she has a hard time understanding complex questions…things like, she can tell u what something is but have a hard time understanding what its used for…even though she knows, she doesnt understand when u ask her…anyways, i can go on all day, but for now, i just wanted to say thank you for sharing your experience. JAzakallau Khair

    • Avatar

      abez

      October 14, 2010 at 5:00 AM

      You’re welcome, and remember- Allah chose this for you because He knew you could handle it and the challenges before you- if you maintain sabr and trust in Allah while seeking His help- will make you better parents, better Muslims, and InshaAllah better companions for one another, InshaAllah, in this life and the next. :)

  49. Avatar

    mahwish

    November 29, 2010 at 4:38 PM

    salamualiakum sister

    your article has given words to my emotions….and im thankful to Allah for giving me the opportunity to read this. You have been blessed with a beautiful heart and i thank you for letting me see things from a positive perspective :)
    i feel very alone at times…..it’s comforting to know there are other sisters in my position…although i do not wish it for anyone.
    May Allah watch over Khalid and you, and may He unite us all in jannah :)
    warmest thoughts from NJ :)

    • Avatar

      Abez

      January 6, 2011 at 1:04 AM

      JazakAllahuKheiran, and Ameen :)

  50. Avatar

    HUMA

    December 5, 2010 at 1:25 PM

    I was looking for printable autism cards online for my son when i came upon your article. I too am a mother with a 10 year old son with autism. He was a perfectly normal child, reaching all his milestones on time. Then at age 2 he began to change, he lost all verbal communication, stopped playing with his toys, lost eye contact and became aloof and in his own world. It was as if my loving, playful full of life child was replaced with sadness, emptiness, and hurt. i would not hear Mama from his lips again until 6 yrs later. My son is now 10 yrs old, he communicates thru pictures and is able to say words.He is still far from a typical 10 year old but he has come along way from when he was diagnosed. I have all the same concerns about his future and his life after we are gone. I was very touched by your article. My son has receive services for Early Intervention till age 3, and is still receiving a multitude of services provided by the state. There are a lot of resources out there for parents like us, and valuable information about special needs trust. You can check out Autism Speaks website for more info, just google them.
    I believe Allah has given us these special children so that we can learn acceptance, patience, and love and in the process we become better human beings and much better muslims.
    I hope that you will communicate with me so that we can continue to share thoughts and help eachother

    Huma

  51. Avatar

    Rafiq & Zarina

    December 19, 2010 at 7:52 AM

    AssalamoAlaykum,
    My Son Altaf has the Nuerological disorder. Born in Houston, Texas. He is 18 but his brain is at the age of 4-6. He looks normal. Hi is a very social person. Wants meet everybody and talks to every body he meets.
    This is the first time he want to pray Tarabih al,ost evryday and prayed with the Zamat al 20 Rakats.
    He is in school in the 10 grade. The Public School is the best think happed to him. His present and all past teachers and fellow students Love him and respect him a lot.
    Altaf has the most loving family, his mother (My wife) is like a slave to him and has dedicated her life for him. His two sisters just love him and take him to mosque, movie, shopping, friendly get together.
    Sister Tamarah I can understand what you are going through and reading your article has given us the strength and courage to prepare us for the future. May Allah help us all.
    Wasalam
    Rafiq

  52. Avatar

    hibahmac

    January 5, 2011 at 5:56 PM

    As-salaamu ‘alaykum,
    AlhamduliLlah for coming to this page and reading this post. It’s a tear-jerker for me – I’m also a special needs mom. Of my four children, three have diagnosed special needs. My oldest was born with spina bifida and we’ve gone through multiple surgeries to deal with associated brain, spinal, orthopedic and urological concerns as well as therapies for her developmental issues. Our second and third child have ADHD and PDDNOS, respectively. And our little one – he’s following suit with speech delay which we plan to have evaluated soon and also see if it’s part of something else.
    MashaAllah, so many have made absolutely beautiful points, points that I intend to carry forward with me, inshaAllah. So many times I’ve been asked – how do you do it? – and my answer is always ‘How can I not ‘do’ it?’ As in, this is Allah’s decree – there is no way to go with this but forward in the best way that I can. You rise to the occasion, advocate for your child, and do the best you can, forgiving yourself a little each day that you did not do a,b,c or that you missed x,y,z of the ideal for your child.
    What a great service to the ummah this post as been. Jazaakum Allahu khairain. Wassalam ~ Hibah

    • Avatar

      Abez

      January 6, 2011 at 1:03 AM

      JazakAllahuKheiran, Hibah- for sharing as well. SubhanAllah, may Allah increase you in sabr and ajr and open the gates for Jannah for you and your very special children. :) At the very least, any time we think we have it hard we can always find someone who has it harder, and is probably doing better, too!

      Lots of hugs, Sister Abez

    • Avatar

      Sister

      May 4, 2011 at 6:12 AM

      Salam Sister Hibah.

      I am so inspired by you. The fact that you have three special needs children and what strength you have to endure such difficulty SubhanAllah. I would love to hear from you. My daughter of 2 months has spina bifida also, diagnosed at 20 week ultrasound. She is doing well Alhumdulilah but like your daughter we have been told she is to endure help from ortho, urology, physio. Allah knows best. Is is possible to email you? my add is: muslimah23@yahoo.co.uk

  53. Avatar

    Norsyeila Abdullah

    February 3, 2011 at 9:25 AM

    IZZAH
    Assalamualaikum. My husband and I have a child who has autism and she is blind too. She can’t take care of herself. She does not walk on her own.She holds one’s back when she walks and she refuses to hold anything which can assist her to walk. She is very strong though. She refuses to listen to anything we tell her. We feel if only she listens it will make things easier. The blind school refuses to accept her saying she is incapable of looking after herself and the spastic school refuses her because she is blind. So, we just teach her at home.
    In the early stage, my husband refuses to accept that she is blind. He always was positive that she would see. i on the other hand accepted fate. I teach her to recite her A,B,C’s ,name’s of animals, fruits,things, vehicles,planets,months ,days,numbers and so on. She learns fast.At three years old she recites her surah well. She sings well and she has a very sweet voice. She can recite “YAASIN” and we love to listen to it. Alhamdulillah for such wonder.
    But then when she grew older, when she was ten she stopped singing or reciting. She would start a few lines and ask me to continue. If i pretend not to listen she will repeat the words again and again and again until i continued. And this is going on until now.
    Now she is sixteen years old. A sweet, beautiful and wonderful person who is always smiling and making others laugh at her words. Although we go through problems like she does not let us sleep at night and she repeats words all the time and she still users diapers and we have to feed her, bathe her, bring her to the toilet, wait with her while she finishes her business and we are pretty handicapped like she is because we cannot go to a wedding or a movie or a gathering, we are still very happy. We will never give her away even for millions and millions of dollars.
    She brings great joy into our family especially in me and I thamk ALLAH for it

    Thank you sister Abez for your wonderul sharing. I am so blessed to come across it.Syukur Alhamdulillah..

    • Avatar

      Abez

      February 8, 2011 at 12:39 PM

      May Allah bless you and your husband and your beautiful daughter and keep you happy and strong in Iman in this life, and reunite you with sight and peace of mind and joy in the next. :) Ameen!

  54. Avatar

    Kay

    February 8, 2011 at 1:51 PM

    Assalamu ‘alaykum,

    Wow. Jazakallu khayr for this excellent post. Your thoughts are thoughts that rattle in my mind as well about the personal fitan I have experienced in my own personal life. Fitan can last forever or as long as you live..subhanAllah.

    What’s more is that I had a student with autism in my class. His mother could not control him in the home while the teachers could control him in school, I see how desperate she is for help and how hard these parents are judged. May Allah make it easy for you and others inshaAllah. I can tell that you will do a fine job sister inshaAllah.

  55. Avatar

    Shiblee Mehdi

    May 25, 2012 at 4:43 AM

    “We have been told that a child’s Jannah is beneath his or her mother’s feet, but in some cases, a mother’s Jannah may be beneath the feet of her special needs child. And perhaps the father’s to.” – it gave me a different feeling.

    [When we look at our children, and Shaitaan 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 Rabb, 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 rizq 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.] – this whole paragraph also gave me chance to think on my issues. Thanks sister for writing in this way. May Allah give us peace.

  56. Avatar

    umm lost

    November 16, 2012 at 12:09 AM

    Today i was very depressed ,I go through bouts of hope and depression quite frequently .I have no friends or families that would hear or understand so i stopped talking about me long time back .I talk to Allah instead . I fight, i complain , i thank and i ask .. all to Him. Today, was a bad day for my Autistic child and that means lots of screaming , slapping , throwing stuff at me . After years of therapy one would hope we could moove forward . But as Allah wills.
    I am pretty much sure Allah wanted me to read your post ,cos i stumbled upon it out of nowhere Alhamdolillah . Does all special needs mom goes through same thoughts :.. so it seems . May Allah grant your family Jannah.
    I raised in a home of bipolar & schizerphrenia and this much i can tell you , Allah taking care of those family memebers of mine , who cannot take care of themselves .while we all the healthy and ‘taking LIFE for granted ones’ moved out to our own life . I am never worried about my baby;s rizk Alhamdolilah … its just that , i am tired . May Allah forgive me and give me strength & understanding..

  57. Pingback: Bittersweet: A Spiritual Perspective on Special Needs Parenting

  58. Avatar

    Ali and Rabia Khan

    April 9, 2013 at 2:19 AM

    Jazak Allah Khair Sister for putting your thoughts into writing and lighting a candle of hope and direction in peoples’s lives specially of those blessed with special needs children. Allah swt have blessed me with 3 beautiful children, a daughter age 15 and 2 sons age 13 and 11…….. Both my sons are diagnosed with PDD’ NOS on Autism spectrum…….. My sister in law have forwarded me this article and I thank Allah swt and jazak Allah khair to her for this great reference since it REFRESHES our IMAAN and remind us of the great gifts of SABR and TAWWAKKUL on Allah swt mercy and wisdom. May Allah gives us the ISTAQAMAT to pass his tests in this DUNIYA and unite us all in JANNAH in the company of his loved ones. Ameen

  59. Avatar

    Sumaya Um Sara

    April 13, 2013 at 11:32 PM

    Jazak Allah Khair for writing this article. I had tears flowing by the end. May Allah protect our children and give us what is best.

  60. Avatar

    Precious

    October 20, 2013 at 9:10 AM

    Asalaamu Alaykum, I found myself perfectly composed while reading your article. But when I got to the paragraph about what would happen to your son after you are gone I started crying. Everything from that point on just rung so true for me. My daughter was diagnosed with moderate autism at the age of two, she is three now.I went through is it my fault, the vaccines fault….the whole shebang. Now each pregnancy I have(I’m expecting my third now) I am wondering will they have it; or will they just have to take on the burden of caring for their big sister. But as you have mentioned perhaps this is Allah’s way of saving my daughter from falling into sin, and this is His way of trying to impart patience and understanding to me, and have absolute faith and trust in Him.

    I still have my bad days/low eman days as you have mentioned but I am striving for Paradise and Insha Allah my kids might just get me there. Jazkallah Khairn for sharing your story,

  61. Pingback: A Dollar or a Dua for the Philippines | MuslimMatters.org

  62. Avatar

    Umm ubaydah

    December 9, 2013 at 2:56 PM

    Assalaamu alaikum ukhti,

    I came searching for muslims with special needs and found your article. Maa shaa Allaah this really got me emotional subhan Allah you described life so well to those who have normal children. My son has a very rare genetic disorder, so rare we may never find anyone with the same thing. Since a week from his birth i feel like i have been emotionally tested beyond belief and left emaciated. Generally most the time i am ok Alhamdulillah but when the future worries start….like i am feeling down thinking will i ever have a good relationship with my son? Will he understand jokes and sarcasm? Will he be able to learn Arabic and recite quran? How severe does a childs special needs have to be to remove the islamic obligations upon them? Subhan Allah

    • Avatar

      FRK

      January 4, 2017 at 11:41 AM

      Hi please leave a reply if you read my msg. I also have a daughter with rare disorder. Please contact me.
      FRk

      • Avatar

        FRK

        January 4, 2017 at 11:43 AM

        Um ubadyah. Please leave a reply.

  63. Pingback: Look who’s coming out, but it isn’t what you think: Part I | altM

  64. Avatar

    Rehana

    August 24, 2016 at 6:07 PM

    Asalam u alaikum you read my mind I am a Muslim mum with three severe and lifelong special needs.

  65. Avatar

    Rabiya Woodiwiss

    August 27, 2016 at 11:01 PM

    Subhan’Allah the most beautiful and moving article I have ever read on autism. I also have a 4 year old non verbal autistic child. I can relate to your struggles and share many sentiments. May Allah SWT make our children out means to enter Jannat Al Firdous and may He help us become the best, most understanding and
    patient parents.. Ameen (I could not see past my tears reading this).

  66. Avatar

    Tanveen

    October 31, 2016 at 12:39 PM

    Salam sister, I am doing a show on looking after children with Down’s syndrome on Islam Channel this Wednesday 02/11/16 at 11am. It is on a Womens discussion show titled Women’s AM. After reading your post I would love it if you would appear on the show to raise awareness and share your experiences inshaAllah.

    Are you based in the UK? We can conduct a skype broadcast if it suits you better.

    Please reply for more information.

    • Zeba Khan

      Zeba Khan

      November 8, 2016 at 9:59 AM

      Walaikum Assalam sister! I apologize, it looks like November 2 has passed already. I would be happy to help but since my child has autism, I don’t think I would be the best person to talk to regards the experience of raising a child with Down’s Syndrome. If there’s any other way that I can help do let me know. Jazakillahkhair!

  67. Avatar

    Hozami Helwani

    February 28, 2018 at 5:57 PM

    ASA
    I’d like to thank the writer for such a beautifully sentimental article. Nevertheless; I’d like to draw the attention of readers to the facts of Autism. I myself am blessed with a son who is on the Autism spectrum. Autism is a condition that requires the caregiver to give love, attention and constant engagement. Our children are suffering from lack of emotional connectivity. Please, take away all the screens from their lives and stand by to see a miracle happening. For more information, please visit
    https://www.youtube.com/channel/UCldqC24woX7P718sdISl04w

  68. Avatar

    Sehrish

    April 13, 2018 at 12:23 PM

    My two year old son Zakariya just got diagnosed with autism. Wallahi readi g what you wrote felt like you read my mind. Everything was spot on. Mau Allah swt give us all strength and patience to deal with and care for our children, and may he protect them always.

  69. Avatar

    Misfa

    June 1, 2018 at 8:32 PM

    Salaams sis,
    I just recently come across you’re article when searching “are parents to blame for disabled child”. Awful I know but I had been told directly that my child has autism due to a mistake I may have made. Even though I look at my child and see the biggest blessing Allah has ever given me, reading this just made me feel better. I pray for your son and your family, may Allah help you all through this trial. Ameen
    Please remember us all in your duas

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#Life

How Do Muslims Plan for Disability

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Families with children with disability have an extraordinary set of challenges and blessings.  Disability (or special needs) is a broad term.

Many disabilities will prevent what we often think of as “normal.”  It may hinder or prevent educational opportunities, and employment. Many people with “special needs” can get educated, get married and live long and productive lives.  The problem for many parents of younger children with special needs is that they typically have no certainty about their children’s future needs. Even if the situation looks dire, it may not stay that way.  

How do parents plan for a world where they may not be around to see how things will end up for their special needs children?  What can they do to help their children in a way that does not violate Islamic Inheritance rules?

Certain types of disability, especially the loss of executive decision-making ability, could also happen well into adulthood.  This can be a threat to a family’s wealth and be the cause of internal conflicts. This is the kind of thing every adult needs to think about before it happens.  

The Problem

The issues are not just that parents believe their special needs child will need more inheritance than other children. Muslim parents usually don’t think that. Some parents don’t want their special needs child to get any inheritance at all.  Not because of any ill-will against their special needs child; just the opposite, but because they are afraid inheritance will result in sabotaging their child’s needs-based government benefits.    

Many, perhaps most special needs children do not have any use for needs-based benefits (benefits for the poor).  But many do, or many parents might figure that it is a distinct possibility. This article is a brief explanation of some of the options available for parents of special needs children.  It won’t go over every option, but rather those that are usually incorporated as part of any Islamic Estate Planning.

Please Stand By

Example:  Salma has three daughters and two sons.  One of her children, Khalida, 3, has Down Syndrome.  At this point, Salma knows that raising Khalida is going to be an immense challenge for herself, her husband Rashid and all the older siblings.  What she does not know, however, is what specific care Khalida is going to need through her life or how her disability will continue to be relevant. She does not know a lot about Khalida’s future marriage prospects, ability to be employed and be independent, though obviously like any parent she has nothing but positive hopes for her child’s life.   

In the event of her death, Salma wants to make sure her daughter gets her Islamic right to inheritance.  However, if Khalida needs public benefits, Salma does not want her daughter disqualified because she has her own money.

Her solution is something called a “stand-by special needs trust.” This type of trust is done in conjunction with an Islamic Inheritance Plan and is typically part of a living trust, though it could also be a trust drafted into the last will.  I will describe more about what a special needs trust is below. For Salma, she is the Trustee of her trust. After she dies, she names her husband (or someone else) the successor Trustee. The trust is drafted to prevent it from becoming an “available resource” used to determine eligibility for public benefits such as Supplemental Security Income (SSI), Medicaid and other benefits that go with that.

If it turns out that Salma passes away when Khalida is 5, and her assets are held in trust for her until she is 18 and her Trustee determines she does not need a special needs trust, she will get her inheritance precisely like everyone else based on their Islamic right.  If she does need benefits, the Trustee will only make distributions to Khalida that would not harm her eligibility.

This way, there is no need to deny Khalida her inheritance because of her disability, and she is also making sure giving her daughter inheritance would not harm her daughter’s healthcare or other necessary support.  

Munir Vohra is a special needs advocate and an athlete

The Shape of Special Needs Trusts

A stand-alone Special needs trusts, which is sometimes called a “supplemental needs trust” the kind without the “stand-by” variation I described above, are a standard device for families that have children with special needs. A trust is a property ownership device. A Grantor gives the property to a Trustee, who manages the property for the benefit of a beneficiary. In a revocable living trust, the Grantor, Trustee, and Beneficiary are typically the same person.  

When the trust is irrevocable, the Grantor, Trustee, and Beneficiary may all be different people. In a special needs trust, the person with a disability is the beneficiary. Sometimes, the person with a disability is also the Grantor, the person who created the trust.  This might happen if there is a settlement from a lawsuit for example and the person with special needs wants it to be paid to the trust.  

In many if not most cases, the goal may not be to protect the beneficiary’s ability to get public benefits at all. Many people with a disability don’t get special government benefits.  But they do want to protect the beneficiaries from having to manage the assets. Some people are just more susceptible to abuse.

The structure of the arrangement typically reflects the complexity of the family, the desire of siblings and extended family to continue to be involved in the care and attending to the needs of the person with a disability, even if they are not the person directly writing checks.   

Example: Care for Zayna

Example: Zayna is a 24-year-old woman with limited ability to communicate, take care of her needs and requires 24-hour care.  Zayna has three healthy siblings, many aunts, uncles, and cousins. Her father, Elias, earns about $70,000 per year and is divorced. Zayna’s mother Sameena cannot contribute, as she is on social security disability. However, Zayna’s adult brother and sisters, brother in laws, sister in law and several aunts, uncles want to help Zayna meet her needs E.lyas creates a third party special needs trust that would ensure Zayna has what she needs in the years to come.

Zayna receives need-based public benefits that are vital to her in living with her various disabilities and her struggle to gain increasing independence, knowledge and dignity.  So the trust needs to be set up and professionally administered to make sure that when Zayna gets any benefit from her trust, it does not end up disqualifying her ability to get any needs-based benefit.  

Contributions to the special needs trust will not go against Islamic Inheritance rules unless made after the death of the donor.

If Zayna dies, her assets from the special needs trust will be distributed based on the Islamic rules of inheritance as it applies to her.

When disability planning is not about Public Benefits

Perhaps most families with special needs children do not use any needs-based public assistance.  They are still concerned about special needs and planning for it.

Example:  Khadija, 16, is on the autism spectrum. For those familiar with the autism spectrum, that could mean a lot of things.  For her parents, Sarah and Yacoob, other than certain habits that are harmless and easy to get used to, it means Khadija is very trusting of people. Otherwise, she does well in school, and her parents don’t think she needs way more help than her siblings and she has just as good a chance of leading a healthy and productive life as any 16-year-old girl.  

The downside of being too trusting is that the outside world can exploit her.  If she ends up getting inheritance or gifts, she may lose it. The parents decide that when she gets her inheritance, it will be in a trust that would continue through her life.  There will be a trustee who will make sure she has what she needs from her trust, but that nobody can exploit her.

In some ways, what Khadija’s parents Sarah and Yacoob are doing is not so different from what parents might do if they have a child with a substance abuse problem.  They want to give their child her rights, but they don’t want to allow for exploitation and abuse.

Considering your own needs

There are many people who are easy marks for scammers, yet you would be unlikely to know this unless you are either a close friend or family member, or a scammer yourself.  While this often happens to the elderly, it can happen at just about any age. Everyone should consider developing an “incapacity plan” to preserve their wealth even if they lose their executive decision-making ability.   

There is this process in state courts known as “conservatorship.” Indeed, entire courtrooms dedicate themselves to conservatorships and other mental health-related issues.  It is a legal process that causes an individual to lose their financial or personal freedom because a court has essentially declared them not competent to handle their affairs. Conservatorships are a public process.  They can cause a lot of pain embarrassment and internal family strife.

One of the benefits of a well-drafted living trust is to protect privacy and dignity during difficult times.

Example: Haris Investing in Cambodian Rice Farms

Haris, 63, was eating lunch at a diner.  In the waiting area, he became fast friends with Mellissa; a thirty-something woman who was interested in talking about Haris’s grandchildren.  The conversation then turned Melissa and her desire to start a business selling long distance calling cards. Haris was fascinated by this and thought it made good business sense. Haris gave Mellissa $20,000.00. The two exchanged numbers. The next day, Mellissa’s number was disconnected.

Haris’s wife, Julie became alarmed by this.  It was out of character for her husband to just fork over $20,000 to anyone on the spur of the moment.  What was worse is that the business failed immediately.  

Three months later,  Haris meets Mellissa at the diner again.  She then convinces Haris to invest $50,000 in a Cambodian rice farm, which he does right away.   His wife Julie was pretty upset.

How living trusts helps

As it happened though, Haris, a few years before, created a living trust.  It has a provision that includes incapacity planning. There are two essential parts to this:  The first is a system to decide if someone has lost their executive decision-making ability. The second is to have a successor Trustee to look over the estate when the individual has lost this capacity.  This question is about Haris’s fundamental freedom: his ability to spend his own money.

If you asked Haris, he would say nothing is wrong with him.  He looks and sounds excellent. Tells the best dad jokes. He goes to the gym five times a week and can probably beat you at arm wrestling. Haris made some financial mistakes. Everyone makes mistakes.

Julie, and his adult children Haroon, Kulsum, Abdullah, and Rasheeda are not so sure it’s just a mistake.  The living trust created a “disability panel.” This panel gets to vote, privately, in if Haris should continue to act as Trustee of his own money.  If they vote that he should not manage his own money, his wife does it for him.

The family has a way to decide an important and sensitive issue while maintaining Haris’ dignity, privacy and wealth.   Haris’s friends don’t know anything about long distance calling cards or a Cambodian rice farm; they don’t know he lost his ability to act as Trustee of his trust.  Indeed the rest of the world is oblivious to all of this.

Planning for everyone

Islamic inheritance is fard and every Muslim should endeavor to incorporate it into their lives.  As it happens it is an obligation Muslims, at least those in the United States, routinely ignore or deal with inadequately.  However, there is more to planning than just what shares go to whom after death. Every family needs to create a system. There may or may not be problems with children or even with yourself (other than death, which will happen), but you should do whatever you can to protect your family’s wealth and dignity while also fulfilling your obligations to both yourself and your family.

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#Society

Cleaning Out Our Own Closets This Ramadan: Bigotry

Why Eliminating Hate Begins with Us

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Before Muslims take a stand against xenophobia in the U.S., we really need to eradicate it from our own community.

There. I said it.

There is no nice way to put it. Muslims can be very intolerant of those outside their circles, particularly our Latino neighbors. How do I know? I am a Latina who came into Islam almost two decades ago, and I have experienced my fair share of stereotypes, prejudice, and just outright ignorance coming from my very own Muslim brethren.

And I am not alone.

My own family and Latino Muslim friends have also dealt with their daily doses of bigotry. Most of the time, it is not ill-intentioned, however, the fact that our community is so out of touch with Latin Americans says a lot about why we are often at the receiving end of discrimination and hate.

“Indeed, Allah will not change the condition of a people until they change what is in themselves…” (The Qur’an, 13:11)

Recently, Fox News came under fire for airing a graphic that stated, “Trump cuts aid to 3 Mexican countries,” on their show, “Fox and Friends Weekend.” The network apologized for the embarrassing error, but not before criticism of their geographical mishap went viral on social media. The reactions were of disbelief, humor, and repugnance for the controversial news channel that has become the archenemy of everything Islamic. People flooded the internet with memes, tweets, and comments regarding the ridiculous headline, Muslims included. American Muslim leaders quickly released statements condemning the lack of knowledge about the difference between Mexico and the nations of Central and South America.

Ironically, however, just about two months ago, my eldest son wrote an essay about the bullying he experienced in an Islamic school, which included insults about him being Mexican and “eating tacos” even though he is half Ecuadorian (South America) and Puerto Rican (Caribbean), not Mexican. I include the regions in parentheses because, in fact, many Muslims are just as geographically-challenged as the staff at Fox News. When a group of Hispanic workers came to replace the windows at his former school, my son approached them and spoke to them in Spanish as a means of dawah – teaching them that there are Latin American and Spanish-speaking Muslims. His classmates immediately taunted him saying that the laborers were “his cousins.” Although my son tried countless times to explain to his peers the difference between his origins and Mexico and defended both, they continued to mock Latinos.

On another occasion, a local masjid invited a famous Imam from the Midwest to speak about a topic. My family and I attended the event because we were fans of the shaykh and admired his work. A few minutes into his talk, he made a derogatory remark about Mexicans, and then added with a smile, “I hope there aren’t any Mexicans in the room!” A gentleman from the community stood up behind my husband, who is Ecuadorian, and pointed at him saying, “We have one right here!” Some people chuckled as his face turned red. The shaykh apologized for his comment and quickly moved on. We looked at each other and rolled our eyes. This was nothing new.

Imam Mohamed Alhayek (Jordanian Palestinian) and Imam Yusuf Rios (Puerto Rican) share an intimate moment during the 16th Annual Hispanic Muslim Day. Photo/Caption by Melissa Barreto — at North Hudson Islamic Educational Center (NHIEC).

Once, I visited a Pakistani sister, and as I enjoyed a cup of warm chai on her patio, she turned to me earnestly and said, “You and (another Latina Muslim) are the only educated Hispanics I know.” She then asked me why Latinos did not have “goals and ambitions” because supposedly, all the Hispanic students in her daughters’ school only aspired to work in their parents’ businesses as laborers. She went on to tell me about her Hispanic maid’s broken family and how unfortunate it was that they had no guidance or moral values. I was shocked by her assumptions, but I realized that this was the sentiment of a lot of Muslims who simply do not know a thing about our culture or have not taken the time to really get to know us.

When I accepted Islam back in 2000, I never expected to hear some of the narrow-minded comments and questions I received from those people who had become my brothers and sisters in faith. After all, I came to Islam through the help of an Egyptian family, I declared the Shahada for the first time in the presence of people from Pakistan, and I was embraced in the masjid by worshippers from places like Somalia, Sudan, Palestine, India, Turkey, and Afghanistan. A white American convert gifted me with my first Ramadan guide and an Indian sister supported me during my first fast. I expected to be treated equally by everyone because Islam was for everyone and Muslims have been hearing this their whole lives and they preach it incessantly. I do the same now. As a Muslim Latina, I tell my people that Islam is open to all and that racism, colorism, classism, and xenophobia have no place in Islam.

Nevertheless, it did not take long for me to hear some very ugly things from my new multi-cultural community. I was questioned about whether I was a virgin or not by well-meaning sisters who wanted to find me a Muslim husband. My faith was scrutinized when my friend’s family introduced me to an imam who doubted I had converted on my own, without the persuasion of a Muslim boyfriend or husband. I was pressured about changing my name because it was not “Islamic” enough. I was lectured about things that I had already learned because foreign-born Muslims assumed I had no knowledge. I was even told I could not be a Muslim because I was Puerto Rican; that I was too “out there,” too loud, or that my people were not morally upright.

I know about good practicing Muslim men who have been turned down for marriage because they are Hispanic. On the other hand, I have seen sisters taken for marriage by immigrant Muslims to achieve citizenship status and later abandoned, despite having children. I have been approached by Muslim men searching for their “J-Lo,” who want to marry a “hot” Latina because of the disgusting exploitation of Latina women they have been exposed to from television, movies, and music videos. I have made the mistake of introducing this type of person to one of my sisters and witnessed their disappointment because she did not fit the image of the fantasy girl they expected. I have felt the heartbreak of my sister who was turned down for not living up to those unrealistic expectations, and who continues to wait for a Muslim man who will honor her as she deserves. An older “aunty” once said to my face that she would never let her children marry a Latino/a.

I met a brother named José who was told that he had to change his un-Islamic Spanish name so that he would be better received in the Muslim community, even though his name, when translated to Arabic, is Yusuf! I have been asked if I know any Hispanic who could work at a Muslim’s store for less than minimum wage 12 hours a day or a “Spanish lady” who can clean a Muslim’s house for cheap. I have spoken to Latino men and women who work at masajid doing landscaping or janitorial services who have never heard anything about Islam. When I approached the Muslim groundskeeper at one of these mosques with Spanish literature to give them, he looked at me bewildered and said, “Oh, they are just contractors,” as if they did not deserve to learn about our faith! I have heard that the child of a Latina convert was expelled and banned from returning to an Islamic school for making a mistake, once. I have been told about fellow Hispanics who dislike going to the masjid because they feel rejected and, worse of all, some of them have even left Islam altogether.

Latina Muslims share a laugh during the 16th Annual Hispanic Muslim Day.
Photo/Caption by Melissa Barreto — at North Hudson Islamic Educational Center (NHIEC).

A few weeks ago, news was released about the sentencing of Darwin Martinez Torres, who viciously raped and murdered Northern Virginia teen, Nabra Hassanen during Ramadan in June 2017. The story made national headlines and left her family and the entire Muslim community devastated. Although the sentence of eight life terms in prison for the killer provided some closure to the public, the senseless and heinous act still leaves sentiments of anger and frustration in the hearts of those who loved Nabra Hassanen. Muslims began sharing the news on social media and soon, remarks about the murderer’s Central American origin flooded the comments sections. One said, “An illegal immigrant from El Salvador will now spend the rest of his life in a U.S. prison where all his needs will be met, and his rights will be protected… When we attack efforts to stop illegal immigration and to deal with the criminals coming across the border every day, remember Sr. Nabra… we should all be united in supporting common-sense measures to ensure that our sisters do not walk in fear of attacks. (And no, this is not an ‘isolated case’…).”

Although I was just as relieved about receiving the news that there was finally justice for our young martyred sister, I was saddened to see that the anti-Hispanic immigrant sentiment within our own community was exposed: To assume that Latino immigrants are “criminals coming across the border every day” is to echo the very words that came from current US President Donald Trump’s mouth about immigrants prior to his election to the presidency. To blame all Latinos for a crime committed against one and claim it is not an “isolated case” is to do the same thing that Fox News and anti-Muslim bigots do when they blame all Muslims for a terror attack.

Why are we guilty of the same behavior that we loathe?

I do not like to air out our dirty laundry. I have always felt that it is counterproductive for our collective dawah efforts. It is embarrassing and shameful that we, who claim to be so tolerant and peaceful, still suffer from the very attitudes for which we blame others. As I write this piece, I have been sharing my thoughts with my close friend, a Pakistani-American, who agreed with me and said, “Just like a recovering alcoholic, our first step is to admit there is a problem.” We cannot demand our civil rights and expect to be treated with dignity while we mistreat another minority group, and this includes Latinos and also other indigenous Muslims like Black Americans and Native Americans. I say this, not just for converts, but for my loud and proud, half Puerto Rican and half Ecuadorian children and nephews and others like them who were born Muslims: we need a community that welcomes all of us.

Latinos and Muslims share countless cultural similarities. Our paths are the same. Our history is intertwined, whether we know it or not; and if you don’t know it, then it is time you do your research. How can we visit Islamic Spain and North Africa and marvel at its magnificence, and travel to the Caribbean for vacation and notice the Andalusian architecture present in the colonial era structures, yet choose to ignore our shared past? How can you be proud of Mansa Musa, and not know that it is said his brother sailed with other Malians to the Americas prior to Columbus, making contact with the indigenous people of South America (even before it was “America”)? How can you turn your back on people from the countries which sheltered thousands of Muslim immigrants from places like Palestine, Lebanon, Syria, and Turkey after the collapse of the Uthmani Empire, many of which carry that blood in their veins?

Latino Muslim panelists during “Hispanic Muslim Day” at North Hudson Islamic Educational Center, Union City, NJ Photo/Caption by Melissa Barreto — at North Hudson Islamic Educational Center (NHIEC).

We need to do a better job of reaching out and getting to know our neighbors. In recent years, the Muslim ban has brought Latinos and Muslims together in solidarity to oppose discriminatory immigration laws. The time is now to establish lasting partnerships.

Use this Ramadan to reach out to the Latino community; host a Spanish open house or an interfaith/intercultural community iftar. Reach out to Latino Muslims in your area for support, or to organizations like ICNA’s WhyIslam (Por qué Islam) for Spanish materials. A language barrier is not an issue when there are plenty of resources available in the Spanish language, and we have the universal language that has been declared a charity by our Prophet, Muhammad ṣallallāhu 'alayhi wa sallam (peace and blessings of Allāh be upon him), and that is a welcoming smile.

There is no excuse.

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How to Teach Your Kids About Easter

Don’t tell my dad this, but growing up, I was sure I wanted to be a Christian. It had nothing to do with the theology though, it was – really and truly – all about the chocolate.

Zeba Khan

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Don’t tell my dad this, but growing up, I was sure I wanted to be a Christian. It had nothing to do with the theology though, it was – really and truly – all about the chocolate.

Don’t get me wrong, I did not grow up in any sort of conservative, chocolate-deprived bubble. My mother was – and still is – a Christian. My father was – and still is – Muslim, and our home was a place where two faiths co-existed in unapologetic splendor.

My mother put up her Christmas tree every year.  We children, though Muslim, received Easter baskets every year. The only reason why I wished I was Christian too, even though I had no less chocolate in my life than other children my age, was because of the confusing guilt that I felt around holiday time.

I knew that the holidays were my mother’s, and we participated to honor and respect her, not to honor and respect what she celebrated. As a child though, I really didn’t understand why we couldn’t celebrate them too, even if it was just for the chocolate.

As an adult I’ve learned that I’m not alone in this conflicted enthusiasm for the holidays of others. Really, who doesn’t like treats and parties and any excuse to celebrate? As a parent though, I’ve decided that the best policy to use with my children is respectful honesty about where we stand with regard to other religions.

That’s why when my children asked me about Easter, this is what I told them:

  1. The holidays of every religion are the right of the people who follow them. They are as precious to them as Eid and Ramadan are to us.
  2. Part of being a good Muslim is protecting the rights of everyone around us, no matter what their religion is. There is nothing wrong with non-Muslims celebrating their religious non-Muslim holidays.
  3. We don’t need to pretend they’re not happening. Respectful recognition of the rights of others is part of our religion and our history. We don’t have to accept what other people celebrate in order to be respectful of their celebrations.
  4. The problem with Muslims celebrating non-Muslim religious holidays is that we simply don’t believe them to be true.

So when it comes to Easter specifically, we break it down to its smaller elements.

There is nothing wrong with chocolate. There is nothing wrong with eggs. There is nothing wrong with rabbits, and no, they don’t lay eggs.

There is nothing wrong with Easter, but we do not celebrate it because:

Easter is a celebration based on the idea the Prophet Isa 'alayhi'l-salām (peace be upon him) was Allah’s son, who Allah allowed to be killed for our sins. Easter is a celebration of him coming back to life again.

Depending on how old your child is, you may need to break it down further.

Allah subḥānahu wa ta'āla (glorified and exalted be He) Created the sun, Allah is not a person whose eyes can’t even look directly at the sun. Allah Created space, Allah is not a person who can’t survive in space. Allah Created fire, Allah is not a person who cannot even touch fire. Allah is not a person, He does not have children as people do. Prophet Jesus [alayis] was a messenger of Allah, not a child of Allah.

Allah is also the Most-Merciful, Most-Forgiving, and All-Powerful. When we make mistakes by ourselves, we say sorry to Allah and try our best to do better. If we make mistakes all together, we do not take the best-behaved person from among us and then punish him or her in our place.

Allah is Justice Himself. He is The Kindest, Most Merciful, Most Forgiving Being in the entire universe. He always was, and always will be capable of forgiving us. No one needed to die in order for Allah to forgive anyone.

If your teacher failed the best student in the class so that the rest of the students could pass, that would not be fair, even if that student had offered that. When people say that Allah sacrificed his own son so that we could be forgiven, they are accusing Allah of really unfair things, even if they seem to think it’s a good thing.

Even if they’re celebrating it with chocolate.

We simply do not believe what is celebrated on Easter. That is why we do not celebrate Easter.

So what do we believe?

Walk your child through Surah Ikhlas, there are four lines and you can use four of their fingers.

  1. Allah is One.
  2. Allah doesn’t need anything from anyone.
  3. He was not born, and nor was anyone born of Him. Allah is no one’s child, and no one is Allah’s child
  4. There is nothing like Allah in the universe

Focus on what we know about Allah, and then move on to other truths as well.

  1. Christians should absolutely celebrate Christian holidays. We are happy for them.
  2. We do not celebrate Christian holidays, because we do not accept what they’re celebrating.
  3. We are very happy for our neighbors and hope they have a nice time.

When your child asks you about things like Christmas, Easter, Valentines, and Halloween, they’re not asking you to change religions. They’re asking you for the chance to participate in the joy of treats, decorations, parties, and doing things with their peers.

You can provide them these things when you up your halal holiday game. Make Ramadan in your home a whole month of lights, people, and happy prayer. Make every Friday special. Make Eid amazing – buy gifts, give charity, decorate every decorat-able surface if you need to – because our children have no cause to feel deprived by being Muslim.

If your holidays tend to be boring, that’s a cultural limitation, not a religious one. And if you feel like it’s not fair because other religions just have more holidays than we do, remember this:

  • Your child starting the Quran can be a celebration
  • Your child finishing the Quran can be a celebration
  • Your child’s first fast can be a celebration
  • Your child wearing hijab can be a celebration
  • Your child starting to pray salah can be a celebration
  • Your children can sleep over for supervised qiyaam nights
  • You can celebrate whatever you want, whenever you want, in ways that are fun and halal and pleasing to Allah.

We have a set number of religious celebrations, but there is no limit on how many personal celebrations we choose to have in our lives and families. Every cause we have for gratitude can be an opportunity to see family, eat together, dress up, and hang shiny things from other things, and I’m not talking about throwing money at the problem – I’m talking about making the effort for its solution.

It is easy to celebrate something when your friends, neighbors, and local grocery stores are doing it too. That’s probably why people of many religions – and even no religion – celebrate holidays they don’t believe in. That’s not actually an excuse for it though, and as parents, it’s our responsibility to set the right example for our children.

Making and upholding our own standards is how we live, not only in terms of our holidays, but in how we eat, what we wear, and the way we swim upstream for the sake of Allah.  We don’t go with the flow, and teaching our children not to celebrate the religious holidays of other religions just to fit in is only one part of the lesson.

The other part is to extend the right to religious freedom – and religious celebration – to Muslims too. When you teach your children that everyone has a right to their religious holidays, include Muslims too. When you make a big deal out of Ramadan include your non-Muslim friends and neighbors too, not just because it’s good dawah, but because being able to share your joy with others helps make it feel more mainstream.

Your Muslim children can give their non-Muslim friends Eid gifts. You can take Eid cookies to your non-Muslim office, make Ramadan jars. You can have Iftar parties for people who don’t fast.   Decorate your house for Ramadan, and send holiday cards out on your holidays.

You can enjoy the elements of celebration that are common to us all without compromising on your aqeedah, and by doing so, you can teach your children that they don’t have to hide their religious holidays from the people who don’t celebrate them.  No one has to. And you can teach your children to respect the religions of others, even while disagreeing with them.

Judaism, Christianity, and Islam are bound by a common thread, and there is much we come together on. Where the threads separate though, is still a cause for celebration. Religious tolerance is part of our faith, and recognizing the rights of others to celebrate – or abstain from celebration – is how we celebrate our differences.

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