Posted by: myautisticmuslimchild | November 8, 2011

Preconception?… I Cried that Night

I contemplated if I should write about my sad experience that happened to me a week ago.

Some said I should do it, others discouraged me a great deal, some even went as far as making fun of me.

So, here it is in complete display, and you can go which ever group you want to belong to.

I felt it is important to address this issue, not because it happened to me, but because it happens very frequently to people who cares for autistic children, or other special need children.

Also,  my hope is to open people’s eyes to see the lives of these caretakers, and children who are struggling with simple task that others taking for granted.

My desire writing this post is NOT  attention to myself, or feeling sorry for me, but understanding, and getting rid of PRECONCEPTION.

So what is preconception? According to the dictionary …An opinion or conception formed in advance without adequate knowledge or experience, especially a prejudice or bias.

Unfortunately, we human beings  carrying this false  sense of “normal”, and anything that doesn’t fit into that bracket, we seem to judge and disregard. Most of the people have a hard time to think out of the box, and accept the difference amongst us, and see the positive in it as well. If you ask me, there is positive in everything, but  we notice the negatives first, and forget about trying to discover the good.

So here is my story and I hope it will never happen to any of you.

One weekend I attempted to attend a lecture, that a family member was giving in a different town. As usual I packed all the tools and food and everything that can keep my ASD 8 yrs old son occupied and content.

When we got there we stayed in a back of the room, all settled in, took everything out onto the table, so we do not have to make any noise during the lecture. We started his Ipad and put it on silent mode so he can entertain himself and not disturbing anyone. Things were  good  as far as I can see. It was a community that did not know me, nor I knew anyone there except one sister.

As the lecture started, not more than 2 – 3 minuteswent by, this one guy got up, walked up to our table, and very angrily, abruptly yanked the IPad out of my son’s hands. ( now most of you who has an autistic child knows abrupt behavior results in severe behavior)

I did not wait for that to happen, I grabbed the IPad out of his hands, grabbed everything  including my son, and went out to the car in a dark parking lot. I sat him next to me on the front and allowed him to play. That moment I lost it completely, which doesn’t happen too often. I cried uncontrollably, remembering every single  insult, physical and emotional pain that others inflicted on me and my two children. Like a flood of water I was completely consumed by the pain that I knew will not going away anytime soon. I felt hopeless, powerless, and very alone. I felt guilty that I could not even stand up for my child in this situation. Two sisters came out to invite me in, and take  us to the children room.

As I was sitting there with him in the dark parking lot almost 2 hrs, and glanced at him in between my crying spells, I wondered if he really understood what happened. He seemed very content with his Ipad and its games. That point I really wished for him not to be aware of his surroundings, and what is happening with us. How ironic!

I’ve been begging God to allow him to break out of that shell he is in, and now I want him to piece that shell back together to protect him from the cruelty of this society. I guess this is when” ignorance is a bliss” comes to practice… but do I really want that?

As I continued to cry, and at one moment  he reached over with his little chubby hand, and grabbed my hand and squeezed it while he was still busy making his puzzle on his pad. It dawned on me, that this little boy is trying to comfort me, the very person, who is supposed to comfort him. That was a blessing in itself. I made some calls to get some human contacts, and pour my heart out, and By God’s mercy I realized that I have allies and some do understand. Here is another blessing to count too.

After the lecture, I went inside so he can use the bathroom, and we walked up to the speaker. When the person who was so mean to us  realized that we have some sort of association to the lecturer, he came to apologize to us. Here is what he said ” I didn’t know you guys are associated to the speaker, and I did not know he is sick. I just did not want a child  not to listen to the lecture, and you just allowed him to play. Sorry.”

That was a stab in a heart again. This is the community that doesn’t know me, but this person is so quick to jump into conclusion and determinant that I am an ignorant bad mother. Despite another blow to my emotions I was able to squeeze out a smile, and told him not to worry about anything. I was broken that night, and I cried a lot.

You see these things are almost every day occurrences in different shapes and forms. Rejection, preconceptions, degrading comments and treatment, discrimination is part of my life and many others as well.

To be honest it is making me strong as I go along, but there are times when all this spills over, and along my spiritual  needs I am wanting some human support as well. Many times I do not have that option to lean on someone’s shoulder, and just cry and let all the hurt out.

I want families and friends to know (not just mine, but all the autistic (special need chilren’s) that there are times that we can not be strong like you all expecting us to be. Sometimes the smallest situation can bring floods of emotions out, and maybe that is the time you all can spend  some extra effort to comfort the person. Sometimes we the caretakers need to cry it out to keep our sanity, and belittling our feelings with harsh words, and expressing  disappointment toward us will not help, it will break us more.

Also, the people who thinks its funny, has to fear God for further oppressing these people whose life is not so ordinary as many others.

As I said before everything has good in it. I am not bitter nor  angry of the person who did this, I actually thank him for this. Why? This gave me an opportunity to see who I can rely on, and who to avoid by all cost.

Furthermore, I am able to write this post, and if just one person think twice before they judge, well I contributed to something good. You see, looks can be very deceiving, and before we jump into any conclusion we need to see the REAL picture. So next time you have this preconception about someone or something, dig a little deeper, and discover the answer to the  “WHY?”

This was a real eye opener for me as well. My son is the bravest little boy. This child wakes up every single morning and ready to face this world, the very world that doesn’t want to face him because of his autism. My son gets up with the smile on his face every time  he falls to tackle this world, the very world that doesn’t want to acknowledge him because of his autism. So, please tell me who is better than that?

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Responses

  1. Tunde. I think you are very brave and I love you. I will never forget the last day of school for Amin in my class. You see, I have a habit of watching people walk away. As I watched you and Amin holding hands, getting smaller in the distance, I saw him look up at you. You looked down at him and smiled. It was the sweetest moment. I always thought you were an awesome Mom. Best wishes always, Kim

    • Thank you Ms. Kim. We loved you soooo much and missing you very much still.

  2. Thank you! Thank you! Thank you!

  3. Hi,

    My son is 4 and a half, and is PDD-NOS.
    We have these kind of attacks quite often. recently I found a blog that I connected with to my roots – as I did with yours. This one empowered me, and I have printed a copy and put it in my bag to give to the next idiot who gives James and I grief!

    The link:

    The content:
    The Top 5 reasons why you should Never Piss off an Autism Mum

    We’ve all been there. Every autism mom has had at least one encounter with some insensitive jackass who insulted our children or criticized our parenting. It might have been the perfectly groomed soccer mom who said your child was merely spoiled, or maybe the old biddy that told you to take your screaming kid outside even though you were already dragging him out the door in a Fireman Carry, or maybe just some random mean guy who muttered, “This is why I hate kids” under his breath while your child happily flapped past him.

    Usually we just have to mention “autism” and the critics slink away, embarrassed and with their tails between their legs, but every now and then you meet somebody who is such a huge asshole they don’t care if your kid is autistic, they just care that your child’s noise/stim/existence is annoying to them, and they don’t hesitate to tell you about how obnoxious your child is and what a terrible job you’re doing raising him.

    Sometimes their callousness shocks us silent, and we sit in the car afterward, thinking of all the retorts we could have made. Sometimes we take the higher ground and walk away, and sometimes we dig in and defend ourselves. (And sometimes we defend ourselves loudly and with many obscenities, but that bitch in the bookstore deserved it!)

    These people who attack us are horrible because they have no empathy. They’re shallow people who probably lead miserable lives devoid of depth and meaning. They need to learn compassion and respect, but mostly they need to learn to fear us, because autism moms are not to be trifled with.

    Top Five Reasons You Should Never Piss Off an Autism Mom

    Five. We’re Already on the Defensive

    What? You think you’re the first person to think I’m a bad mother? Get in line. People have been assuming I’m a bad mother for the last five years. I chew up people who think I’m a bad parent for breakfast. You think there’s something wrong with my kid? No shit, Sherlock – this panel of physicians and psychologists agrees with you. Tell us something we don’t know. Have something new and clever to add? No? NO? I didn’t think so…

    In other words, we have experience with assholes like you.

    Four. We Are Not Socially Well-Adjusted

    We were real people once, and we will be real people again someday, but right now we’re living on the fringe of polite society. We have cut ties and discarded the family and friends who couldn’t handle our situation. We all suffer from severe PTSD. Our houses are messy, our surfaces are sticky, and we know the words to way too many Wiggles songs. We clean up disasters that you couldn’t even begin to contemplate. We live in semi-isolation, trying to have philosophical conversations with children who only know 18 words. We wear yoga pants all day. Our lives are not like other people’s lives. Do you really want to make us angry? Or do you want to give us a really really wide berth and back away slowly because you’re scared of what we might do if we snap? Yes. Good choice.

    Three. We Know How to Fight

    Autism moms know how to fight because we practice. We fight all day long. We fight with doctors about treatment, and then we fight with insurance companies to get it paid for. We fight with the state over services and we fight with schools about our IEPs. We fight with our families who won’t come to visit us anymore and we fight with our husbands to let off steam from all the other fighting we’re constantly doing. We fight with our children to make them keep their pants on in public. Do you think for a second that we would hesitate to fight with a complete stranger who was totally asking for it?

    Two. We’re Already Angry

    Autism moms carry huge amounts of unprocessed rage just below the surface. We’re mad at god or the universe or fate or whatever it is out there that gave our children autism. We are furious at the cards we were dealt and indignant that such a horrible thing had to happen to our children. We are angry about the loss of the child we were supposed to have, and we never truly stop mourning. We’re angry at the doctors who didn’t catch it early enough and also at the doctors who did. We hold a grudge against anybody who ever failed us as we tried to make sense of this chaos, and we’re also furious at ourselves, because we constantly feel like we’re not doing enough to help and we’re secretly afraid that it might somehow be our fault in the first place. We are already walking bundles of resentment…do you want to be the straw that breaks the camel’s back?

    One. We’re Sleep Deprived

    Some of us haven’t had a good night’s sleep in years. Between the stress, depression, anxiety, and the kid who wakes up screaming for popsicles at 3 a.m., we’re all beyond exhausted. We’re muddled and short-tempered and irrational and crazy. Like ax murderer crazy. Like Mel Gibson crazy. There are all sorts of studies linking sleep deprivation to psychosis and that would probably hold up in court if I decided to assault you. Keep that in mind the next time you fail to keep your opinions to yourself, and beware the autism mom.

    • Thank you for your reply. I am printing the list out and i will be handing it out. A BIG THANK YOU!!!!
      I know I would hug you if I would meet you.

  4. You have not only spoken these words from your lips and your experiences but you have written this piece from the heart of every mother with a special needs child out there. This is an empowerment of an article! And no I did NOT feel sorry for you I am in fact humbled and have so much respect for you and every other caretaker who shares your story. God has not given you a burden or a test, but a blessing He knows you are strong enough for. I love you Amin! Can’t wait to share this.

    • Thanks ilaff. ad thank you for listening to me that night, I really neded a shoulder to cry on even if it was over the phone. :)

  5. God is blessing you more than you know it. He gave you a blessing and disguised it as a burden to the rest of the world. Only you truly know how much of a blessing you have in Amin. A blessing that even I can’t fathom.

  6. It is a challenge to be a parent of any child, so I can only imagine that those challenges are tenfold for parents of children with special needs. When I see another child “acting out”, whether due to special needs, his or her own frustrations or misbehavior, I completely understand the look on the mother’s face. The frustration, feeling of helplessness, maybe compassion for her child, and sometimes embarrassment. Unless the mother is abusing her child in any way, bad parenting is furthest from my mind and I don’t understand how some people can be so cruel.

    I had the experience of travelling overseas with my husband and my first two kids when they were just 13 months and almost 3 years old. My kids do not have special needs, but they were definitely restless and irritable for a large part of the trip home. Not to mention that they had become sick just days before the flight and required antibiotics. My husband and I were stressed and exhausted enough from a lack of sleep and from tending to our children. I felt for the other passengers who had to put up with the noise through the long flight, but I did not feel for the glares from the idiots who looked at us or made comments under their breaths(that I could still hear) like we were the worst parents in the world. Then those same people were pissed when the airport officials let us, with our wailing, uncomfortable baby and toddler, jump to the front of the customs line.

    Some people just do not have any compassion or kindness in their hearts. They are ignorant and rude. I feel for the parents with kids with special needs. You have to battle the ignorance on a daily basis and do your best to be brave for that amazing little human being you hope everyone else can see. Kudos to you and thank you for sharing.

  7. You have every right to express and share your experiences with us. I don’t understand why anyone would want to discourage you from that. How will the rest of the so called ‘normal’ world understand or learn to see things differently if parents and carers don’t speak out and let everyone know what’s happening? One other thing I really don’t understand that you said at the beginning of your post… why would anyone make fun of you over this? I have a sense of humour but I don’t see the funny side to this at all.

    One other thing… that guy that made the silly comment and half heated apology at the end- don’t smile or respond politely to people like that. They want to feel vindicated for their ignorance, not guilty, when in fact they SHOULD feel guilty as it’ll make them think twice in future. I wasn’t there so it’s hard to say for sure, but the vibe I got from your post was that he ONLY apologised because you were associated with the speaker (and didn’t want the speaker to think badly of him) NOT because he misbehaved towards a special needs child. All the more reason to not be quick to accept a half hearted apology or let him off the hook.

    I’ve come across people like that myself (under diferent circumstances as my disability is physical so it’s a different kind of ignorance) and I realised that a number of times when I let people off the hook for their ignorance, then I had no peace of mind. I’d still feel upset and lose sleep over it. Now I give them what’s coming to them (not physical attacks or swearing, just a very harsh telling off) and I feel so much better afterwards. I then feel less anxious and sleep better as well.

    I really truly hope this didn’t spoil your Eid inshAllah.

    Neelu

    • Ws Neelu,

      Hope you had a great Eid with your family and friends.
      Thank you for your input, as always I value your opinion, and appreciate your honesty..

      This incident did not spoiled my Eid alhamdulillah.
      You were asking about that someone made fun of me… yes they laughed at me and told me i need to get a life. I am used to this b/c this person always belittle my problems which i do not discuss with but she hears it from others.
      Others think i should be rather ashamed to display my feelings and I should just shut up and not discuss my feelings in publick, even if this would mean that others might realize how to react to this type of situation.
      Either ways, i am glad i wrote it, and I am hoping that it will make a difference in others life.
      Your idea is to be more stern is very tempting, and I do harbor a lot of sadness in my heart and toyed with the idea of telling people off, but never got to that point. I was raised that way, and I do not think it is always duable in life to be respectful to the ones who walk all over on you.
      Again, thanks for your comment

  8. AllahuAkbar and may he reward you infinitely for your sabr, and may he guide and forgive those who act in ignorance.

    • thank you. as always if we look for good in things it will be good, sometimes we just have to make a bit of an effort. Thank you for your support. :)

  9. [...] face in navigating the Muslim community. Read this post on attending an eid celebration and this one on dealing with the preconceptions of quick-to-judge [...]

  10. Assalam,

    Your blog really touched my heart,especially the part when he held your hand! That really is a blessing from Allah. I pray that Allah blesses you and your two sons. May you be granted the highest level of Jannah for your patience. Also I think the key to stopping this ignorance is to raise awareness of autism in the Muslim community. Please let me know of how i can approach my community about this issue.

    May Allah bless His beloved Messenger (As), and the entire ummah.Ameen.

    Take care,

    Maher Mahmood

    • ws,
      Thank you for your kind words. My son is surely a blessing, and My daughter as well. She had been there for her little brother all these years, and inshaAllah she will continue to support him in the future.
      I do not know how your community responds to this request, but one way to address it is a khutbah, where they can explain what it means to be a special need and how it is being addressed in the Quran.

      I just had imam Hasan write an article about it, mashaallah it is so beautiful it brought tears into my eyes. i asked him to address this issue in an upcoming book that will be geared toward the Muslim community to make awareness about autism.

      Also, this very article will be used as part of a pamphlet that will be distributed in a future to masjeds, and other autism organizations. The pamphlet will be including Shk Hasan’s article, a Muslim doctor (who is also a parent of an autistic child) talking about autism, a Muslim social worker talking about autism and resources, and Myself will be writing about being a Muslim parent with autistic child. IA once everyone will submit their articles i will be looking into printing and distributing as well.
      Speak with your local religious leaders about this issue. it is not necessary has to be only autism, I think it should involve all special need children issues.
      May Allah bless you for all your effort…ameen
      Aasiyah

  11. May the good great Almighty Allah see them thru.ameen

  12. ASA sister,

    As a mother of a 10 year old autistic daughter,I deeply understand your post, what happened to you, and Masha’Allah, the amazing way you handled it. People are so prejudice in many ways. I liked the last paragraph on your post how you explained how the child feels inside (how happy they are). I also discovered about my daughter, inside she knows who is nice to her in her own way. Please keep in mind that Allah will gave you this hardship because He loves you and He knows you are the person who can handle that. The greatest hardships were to given to the Prophets and they were promised Jannah. JAK for sharing with us… I really appreciated reading this.

    • Ws, Thank you for your kind words. May Allah bless you for raising your wonderful little girl…ameen

  13. subhallah sister , i feel your pain . i feel whatever you have written , has been experienced by me :) sad but true. I am someitmes happy my cerebral palsied child DOES NOT understand that people are mocking him , making fun of him etc. i am happy that he doesnt see my tears , though he may feel my pain. May allah guide us and help our kids inshallah .

    • ameen, may our children always be spared from emotional and physical pain. May their parents find contentment in Allah’s word ameen


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