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I’ve tried several times to begin this article and this is my third attempt. I’m supposed to be writing about special needs parenting from an Islamic/Muslim/Spiritual point of view, and the challenge is finding a balance between the bitter and the sweet. I have had some experience, my son Khalid was born with autism, a neurological disorder with complex genetic causes and no known cure. He woke up crying every two hours from the day he was born until he was almost three. He learned how to talk just last year and he occasionally still freaks out if you laugh too loudly in his vicinity. He used to bang his head against windows and walls and cry until he threw up. He’s made wonderful progress, Alhamdulillah, 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, and having a child with autism has been a blessing that I cannot imagine living without. I’m sure there’s more to learn still, but I know that once upon a time, I thought waiting for an hour was a long wait. Until a few months ago, putting Khalid to bed took an average of an hour and a half every night – sometimes less, often more. I would sit next to him, or lie down next to him, and wait for the screaming, bouncing, kicking, pinching and crying to fade into silence. And I had to sit quietly, and not move or talk, and do my best to imitate some sort of maternal rock as the storm of Khalid battered against it.
I didn’t do a very good job at first, I would yell at him to lay down, and he would become scared and cry. So I would yell more, and he would scream, and I would yell more, and it would escalate until he would be shaking with fear and I with rage and at some point it occurred to me that my own son was genuinely terrified and couldn’t understand why he was being yelled out. And then, Allah gave me 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.
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.
© MuslimMatters.org by Abez on July 21st, 2010. All rights reserved. Please see legal & other disclaimers here.
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This article is lovely…honest and heartfelt. So glad “Peterbrownpsy” tweeted it. Blessings to you and your family.
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.
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.
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)
ameen
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.
Ameen, Ameen, Ameen. JazakAllahuKheiran, and may your Umrah, and all the duas you make in it be accepted.
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
Subhan’Allaah. Thank you for a beautiful post.
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
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.
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!
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.
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.
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
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!
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!!
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.
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
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.
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<<<
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.
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!
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.
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
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
http://gulfnews.com/news/world/pakistan/mother-told-operator-she-killed-her-children-1.658186
Inna lillahi wa inna ileihi rajioon. May Allah have mercy on us all.
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.
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
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
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.
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
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.
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.
Ameen Noma, and may Allah grant you the same.
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
I fell to bits, and then Allah put me back together again. What a blessing Autism has been for both of us, SubhanAllah
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
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
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.
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.
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.
InshaAllah, and may you and your sister be in Jannah together.
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.
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.
Well written article. I often feel the needs of special needs children and adults are not addressed in Islamic articles and lectures.
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.