Don’t Say I’m Sorry

By Fatima Syed

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Sareen during Northbay Camp. A three day experience with typical middle schoolers. Here she is seen with her headphones, used to provide pressure and block loud noises.

“I am sorry”. Those three words can mean so much in the right context but to me, at that time, they just seemed hollow and inappropriate. Those words were uttered by the mother of my daughter Sareen’s fellow camper when she found out that Sareen’s older brother has autism too. Her words were followed by, “I take my normal kids for granted. I forget I am so lucky and blessed. Look at you. You must have it so tough.”  I could have been defensive or angry but after 13 years following my son’s diagnosis, I have listened to everything under the sun and nothing surprises me anymore.

Sorry. Please don’t use the word “sorry” about me or my family. Yes, sorry had a place more than a decade ago when my entire world and expectations fell apart and reconfigured when my kids got the “A” (autism) diagnosis. But sorry has no place to describe my life with my kids. Their disability does not mean they are a source of eternal grief for me.

Their conversations are literal and they use devices to communicate and yes,they probably won’t be completely independent as adults. But that does not mean they don’t exist or that they don’t matter. Their existence is, in many ways to me, an embodiment of human spirit, purity and hope. Their love is not expressed in eloquent sentences, but when they hug me with a special smile that lights up the room, words are not needed. They are capable of so many things, things that will surprise you, touch you, and make you smile, but you won’t know that if you dismiss them based on a single label. Just make an effort and maybe, just maybe, you might learn a thing or two from them.

My life is on another dimension than yours. We don’t know anything about college applications, sports, peer pressure, weddings, or planning for grandkids. Heck, we don’t even know what my kids’ futures looks like andwhat their adult lives hold for them. We have dreams for them, we have hopes, and, most of all, we demand and expect respect for them.

Whenever I see a disabled adult patient, I always think about my kids and

Sareen dressing up in Mom's Desi garb.

Sareen dressing up in Mom’s Desi garb.

what this world will give them and whether I will have the strength to keep on going. But not today. Today I will smile at my 13 year old daughter sneaking my most expensive perfume and making it part of her ever growing treasure of glittery objects and sweet smelling liquids. Today, I will feel proud of my 15 year old son helping his grandma do chores around the house and laugh with him as he dances to hip hop music with her.

Empathy is welcome. Curiosity too. Awkwardness is understandable. Pity is another animal. Pity is not accepted. I did not say all that to her. I smiled and calmly said.”There is nothing to be sorry about. My kids have challenges but they are great kids.” I could tell she was not convinced. But that is another thing about living in an alternate universe. You stop caring about things that, at one time or place, would have made you mortified or ashamed.  In our universe, the rules and expectations of happiness are very different.
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Fatima Syed

Through her blog series with CHAI, Fatima shares some of her experience as a South Asian mother of two children with Autism and, through breaking her silence, helps to eliminate the stigma of mental health disorders that so often result in injustice and prejudice.  Fatima blogs for us this month in honor of Mental Health and National Children’s Mental Health Awareness.

10 Comments on “Don’t Say I’m Sorry

  1. Dear Fatima,

    Glad/ proud would be small words to describe how I feel knowing that you write about your experience. You’re absolutely right about living in an alternate universe and anyone who has a disabled relative will be able to relate with your thoughts.

    Lots of love!


  2. Dear Fatima, You are a wonderful woman!! I am really proud of you! You have expressed your emotions in beautiful way. In Shaa Allah your both childern will be fine and they will make you proud Mother!!

  3. Fatima: I only met you a few times, once on my mehndi in Lahore and a few times at Chacha jan Ayaz’s house and finally the last time I met you in Chicago when you were on your way to the east coast. One needs to meet you only once and come to realization that you are special. ALLAH chooses very special people to test their faith. Look at Hazart Ibrahim’s story, Hazarat Lut, and many others. You define what a true “muslim” is and I envy your courage and strength. May ALLAH give us all the wisdom to understand HIS blessings, which we often take for granted. Salaam to Rahat gee, who has also been the wind beneath your wings. Come and visit us in Indy anytime. Luv Ayesha & Hamid

  4. Fatima what an eye opener for all. I haven’t met you since your wedding. Your love and understanding for your kids and people in general is commendable, must be the genes. 🙂 Salaam to Rahat Aunty and luv to your little ones, a mum’s courage has no earthly measure. Allah only test’s His best people, so we can learn and be a better person too. May Allah bless you n your family with joy n happiness always. Amen.
    From Faisal.

    • Dear Faisal,
      Thank you for your kind words and wishes.
      We appreciate your support. I sent your salams to ami and the kids as well! 🙂
      Hope all is well with you.

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