My Golden Prince and Shining Star- A Journey of Parenting Children with Autism

By Fatima Syed

My name is Fatima Syed.  I am a physician by profession and the single mother of two teenagers.  They are well-mannered (mostly), kind, sweet, funny, mischievous and good looking.  They throw temper tantrums on occasion, get migraines, have their particular quirks and like dancing, music and perfume.  They both also have Autism.  Today on World Autism Day, for the first time, I have decided to candidly talk about the trials and tribulations, joy,s and wonder that having two children on the Autism Spectrum Disorder brings.  I have reached a point of acceptance in my life about my situation which allows me to do so.  I want to because I believe that embracing and sharing our most vulnerable side can make us gain strength.  I want to because even if one parent can relate to and gain solace and hope from my story, it will be worth it.  It will be worth it if someone whose life has been unaffected by autism reads this and has a different attitude towards a child who is screaming due to sensory overload, instead of assuming they are having a tantrum.

There is No “Normal”

Before today, I have kept my children’s diagnosis mostly private to acquaintances.  When I go to social gatherings, parents would talk about their kids’ academic and social achievements.  Conversations would revolve around their soccer practice and homework and their birthday parties and I would not say anything.  There were many reasons.  I did not want to keep talking about Autism and how challenging my life must be, and the inevitable “You poor thing”.  Especially in South Asian society, where perfection is expected and any disability or challenge or perceived flaw is a taboo.  I just wanted to act like everything was ok.  I wanted to leave my home life behind and, for a little bit, transcend into a “normal” world.  It took me years to come to this point but today I realize that there is no “normal”.  Everyone has challenges in different ways.

April is Autism Awareness Month

Autism is a neuro-developmental disorder that today is believed to affect at least one in one hundred children, three fourths of them are boys.  There is a lot of research going on today and most people, especially in the US, are familiar with it.  However, over ten years ago when my son got diagnosed, the literature cited it as a “rare neurological disorder affecting one in ten thousand” and that almost all children got institutionalized with “dismal fates”.  That was the first article I read on the world-wide-web the evening I found out my son had Autism.

Our Golden Prince

fatimaarsalanbabyMy son was the first-born on both sides of the family.  The first two years of his life he was the golden child for both sides of the family.  My now ex in-laws had his portrait painted professionally and proudly declared he was the prince of the family.  And why should he not be?  He was the most beautiful child ever, with milky white skin (highly treasured in Pakistani culture), huge brown eyes, and a cherubic face.  He was also smiling, easy-going, and bilingual, able to converse in both English and Urdu.  Everything was perfect until he was almost two years old.

What We First Noticed

At first, his language stalled.  The pediatrician said it was normal to regress as he just had a baby sister.  But then over the next few months his behavior regressed. He started developing repetitive behaviors, turning the wheels of a toy car and staring at it for hours.  Running back and forth over and over.  He would laugh hysterically for no reason and could not be stopped.  He stopped responding to his name.  Again, we were told that he probably was just regressing due to the attention being given to his baby sister.  I would watch him, terror accumulating in my heart.  Helpless, as I watched him fall deeper and deeper into an abyss where I could not reach him.  Finally, the symptoms could not be ignored anymore.  We were told that our son had autism, that the outcome was dismal, but there was a program called “Applied Behavioral Analysis”, which was encouraging.  Basically autistic children don’t imbibe from their environment the way typical kids do, so the idea was to give them intense one-on-one forty hour a week therapy.  The therapy was expensive, not covered by insurance companies and parents had to fight for getting their kids the services.  How we went through that is for another day.

Grieving Our Dream

It is interesting how grief affects everyone differently.  My in-laws blamed me for the diagnosis, saying I did not talk to him enough.  My ex-husband became angry and actively researched treatment options.  My mother was calm, supportive and a pillar of strength, and my dad’s favorite phrase was that my son would “grow out of it” with therapy and it was a “phase”.  And as far as I was concerned – I felt like I had to become the supermom.  It was up to me to “bring him out of this and recover him”,  as everyone said.  I was the mother.  If I worked at it really hard I could “cure” him.  I did what I was supposed to do, running therapy programs, constantly trying to bring him out of the world he had retreated into, an inner world I knew nothing about.  It was like my child had died and this withdrawn little boy had invaded his body.  Inside I was shattered, shocked, scared, and heartbroken.

Our Shining Star

I looked towards my daughter who was over a year old by now and a bundle of pure joy.  I called her my shining star because of her
sareenbaby starry bright eyes and because she was the ray of hope I looked towards for strength.  She was shown by my son’s therapists as an example of what a typical child was like.  She was interactive, friendly, full of curiosity and life.  That is until she slowly started stalling her language, not responding to her name at age 19 months.  The experts came and did an evaluation and told me she did not have Autism but a mother knows.  With a sinking heart, I watched the light in my shining star’s eyes dim every day and I knew.  On her second birthday, my second child was diagnosed with PDD-NOS.  She was not thought at that time to be severe enough to get a full blown diagnosis of Autism but that diagnosis was changed years later to Autism.

Focused, Determined and Still Blamed

This time, we mechanically repeated the steps we took with our son.  Home-based therapy, which required me to work one-on-one with her as well, running two home based programs, going through the school system for funding.  My parents were in Pakistan at that time.  My mother was undergoing treatment for her newly diagnosed breast cancer.  I could not be there for her as I was told I had to focus on my kids and forget about my feelings or needs.  My ex was angry but proactive with getting the kids services.  However, he told me I was not doing anything of value for the kids.  My ex in-laws alternated between blaming me and trying to find different holistic and spiritual cures.  But eventually, it was clear that the golden grandchild was not golden to them anymore.  He was broken, thus not to be displayed as a source of pride to their community.

Silently Screaming

Those were the initial years of life with Autism.  In a span of one year, both my children had the diagnosis of Autism and had home-based programs, which required me to stay at home all the time, supervise their therapies, weekly meetings, IEP meetings with the school system, have the therapists funded by the school system come in and out of the house all the time with no privacy and no social life or support, and a husband who was becoming more and more angry and withdrawn towards me.  In this time period, I internalized my anguish because I had no time to grieve openly or focus on myself.  I gained thirty pounds during this time because I drowned my sorrow in ice cream and pizzas.  I was a very young woman, but I felt old and dead inside, like I had the weight of the world on my shoulders and I was silently screaming while my face remained impassive.

Life, Inner Strength and Acceptance…

Pakistani society has a lot of expectations for mothers.  We are supposed to sacrifice everything for our kids and forget about ourselves. But unless we are whole and have internal strength, coping with a life-altering situation such as a child’s disability, you are only breaking down yourself, let alone being able to support your child.  This is how my life started as the mother of two children with autism.  But this is not how it is now.  Grieving and acceptance is a process.  I am still not there, but I am trying.  My kids are a far cry from how they started at full blown regression and I am no longer a terrified young mother, but how we all got to where we are now is a story for another day.

fatimapic

Fatima Syed

I am a physician in Hospital Medicine by profession.  I enjoy reading, traveling, stimulating conversations and, of course, spending time with family and friends.  I also aspire to express my thoughts through short stories, blogs and hopefully one day a novel. Injustice and prejudice affect me, especially when directed towards those who cannot stand up for themselves.  Through my blog series with CHAI, I will share some of my experience as a South Asian mother of two children with Autism and, through breaking my silence, try to eliminate the stigma of mental health disorders that so often result in injustice and prejudice.

 

62 Comments on “My Golden Prince and Shining Star- A Journey of Parenting Children with Autism

  1. Kudos to you for your brave words! After all these years I feel that I know a little of the struggle you went through .

  2. Fatima May ALLAH give you the strength and patience to make it through. Salaam to mom. This is Hamid.

  3. Dear Fatima, Thank you for sharing your thoughts. Seven years ago, I lost my only sister because I believe she couldn’t cope with caring for her 5 year old autistic son. So, one night she went to sleep and decided never to wake up again. She was a perfectly healthy 34 year old beautiful woman who loved life. But she tried so hard to be the best mother to her son. She worked, she took him to therapy, attended school meetings, cooked, cleaned, prayed hard but ….she couldn’t make it. Now, my brother in law is taking care of my nephew and doesn’t remarry because he is not sure of how another woman would treat his son. I admire you for your strength and for your acceptance of your situation. I know how hard life is for a parent with autistic children because I have seen it. But remember that your children are living in a country that recognizes special children and provides them with the best of Education and therapy so that they can become contributing members of their society. Think of all the autistic children in Pakistan and other third world countries where they are not even diagnosed properly and have no access to individualized Education plans. God bless you and your kids !

    • Dear Shazia
      Your words left me speechless .I am very moved. God bless you,your sisters soul,your brother in law and especially your nephew.

  4. Societal expectation, especially in south asian culture, is a force dificult to cope with. Rather than being a supportive system, it breaks and pushes you to a dead end. Kudos to you, Fatima, you had done a tremndous job!!!! Best of luck and my prayers are with you all the time!!

  5. God chose you for a reason. When he puts burdens on our back, we move our behinds and we move our work forward. We drag it, pull it, push it and we move it! Because he is showing others what man can do. It helps the everyday people cope better. Your gifts of beauty, grace, education all make you a good choice for God’s work. You’re stellar & keep smiling. We are bigger than our challenges says the last verse of Albaqara. Show is how it’s done captain. #wishingyoutheeyeofthetiger

  6. Bravo Fatima ! Sharing your most vulnerable side not only made you gain strength, everyone who have read your Brave Acceptance have somehow related to the challenges they are facing and got Strength, Inspiration and Bravery to accept and fight with them . I wish I would have known you more closely . MA , what a strong person you are ! May Allah continue to bless you .

  7. Thank you for sharing your story – in strength and solidarity.

  8. Thanks for sharing this Fatima. Beautiful mom of Golden Prince and Shining Star, you are sunshine inside out! Love

  9. Fatima thank you for sharing this. I read this as soon as i opened facebook today but been lost for words for hours . I could easily relate it with my situation of having my eldest on autistic spectrum disorder(aspergers) . Some of the words literally brought tears in my eyes.You are such a brave and strong woman and and your kids are so lucky to have you as their pillar of strength. May Allah keep you strong and your children happy .

    • Dear Shazia
      My prayers with you and your family. Thank you for your words and prayers.They are very much appreciated

  10. I applaud u for all the difficulties and tribulance u went through. Bravo!!!

  11. Dear Fatima,
    Thank you so much for sharing your story; my prayers are with you, your golden prince and your shining star.
    One of my favorite quotes is”Everyone has a burden; what counts is how you carry it”.
    Your burden is no doubt a very heavy one and you are carrying it with strength and dignity.
    God bless you.

  12. Well written Fatima. May God give you the strength to become a symbol for other mothers of autistic children. Insha Allah, you will find the reward in your children;s achievements. My love to you and regards to Rahat..

  13. you are inspirational fatima, to everyone….your challenge may be by far the bigger one but your reward will surely be the bigger too insha Allah….you’re giving hope to all of us through your writings….you also write very well, would love to read more on your blog.

  14. Never knew u were going thru so much, may Allah be with u,

  15. Fatima, thank for having the strength to share. Respect, prayers, and best wishes for you and your children’s future.

  16. Dr Syed, I am proud of you. Just remember that your children are special – and they have you. I have quite a few friends whose children are also autistic. It takes a lot of their time and patience. Stay with it, you have my full support.
    Stay safe and happy.

  17. Dear Fatima,
    I do not have words to describe my feelings. All I can say is my prayers are with you. Mashaallah you are a brave. strong young mother. May Allah give you all the happiness and best reward for all your hard work.

  18. Dear Fatima,
    Your story is very touchy! My eyes get filled with many tears. You are a good mother who did a lot for the children. I am glad that you took a stand for yourself. May Allah SWT bless you and your children.

  19. So touchy .at 4am I just started reading and couldn’t stop till end.your kidz r lucky they have a mother like u.i m just speechless on ur efforts only a great mother can do it.may Allah give u more strength.ameen

  20. Salamz!

    Hats off to such a pretty young and MashaAllah iron strong mother of 2, a true inspiration.. your words give us strength to cope our hard challenges of life, with full strength and dignity!!

    May Allah swt gives you and your kids happiness both of life and hereafter.. Ameen!!

  21. Fatima I’m so impressed by your bravery and courage. What you have done for your family while working is breathtaking. Thank you for sharing. You may be interested in Brene Brown’s TED talk on the power of vulnerability because what you have done by sharing is exactly what she promotes: “the courage to be imperfect to tell the story of who you are with your whole heart.” It has blessed us all. https://www.ted.com/talks/brene_brown_on_vulnerability

    • Thank you so much Kayla. I did check the TED talk out after i read your comment and found it to be very interesting. Thank you for sending the link and your support!!

  22. What a powerful article. So very proud of you—-amazing mother, beautiful person and awesome physician. you have so much to share and offer. carry on with strength and dignity and continue being the role-model that you are. you will always have our love and support.

  23. Wow! Your article gave me goosebumps and left me speechless. Your children are incredibly lucky to have a mother like you. And you in turn are truly blessed to have your mother be an inexhaustible source of strength, love and commitment for your family.

    Honey, you are one of the bravest people I know. God bless you and may He and His angels always keep watch over you, your golden prince and your shining star.

    • Thank you so much for your prayers,support and encouragement 🙂 I totally agree with you that the kids and I are blessed to have such an amazing mother and grandmother. We are blessed!

  24. I have always thought of you as a role model and a rockstar for raising much-needed awareness for mental health issues in the South Asian community. Thank you so much for sharing your story – it reinforced all the admiration I have for you and Rahat Auntie. Lots of love to the kiddies!

  25. Kudos to you Fatima.You are a source of inspiration for all the parents who have Autistic children.May Allah give you strength to carry on the good work of parenting your Golden Prince &Shining Star.In Shaa Allah you will b duely rewardedby God Almighty.

    Perveen Butt.

  26. Having emerged from such uniquely challenging situations with grace, dignity, and success, you truly are the epitome of strength and resilience. You have always been a source of inspiration for me, and your courage in sharing this personal aspect of your life with the world only serves to reinforce that. I am in awe of your strength and of Rahat Auntie’s selfless devotion.
    Lots of love to our Golden Prince and Shining Star!

  27. God loves you and your children,
    Will keep you and your kids In my prayers!! You re one hell of a woman!! All this time I never knew watt you ve gone thru but how could I ? You re always the person who lights up the room!!!

  28. Pingback: Don’t Say I’m Sorry | CHAI

  29. Dear Fatima,
    You have proved to be the best mother by taking care of you children with love and patience. Not everyone has that kind of strength. May Allah shower His countless blessings on you and your family. My prayers are always with you.
    Was trying to recognize you. Are you Fatima Hasnat?

  30. You are a hero! I don’t thing that my words can justify what my heart
    feels for you, your mom and your kids. You are all very special.

  31. Your life is an inspiration.I can relate to this as one of my children is on autistic spectrum.Here in Pakistan lack of understanding and insensitivity adds to the challenges of the child.I wish we can bring awareness and proper therapies here.I pray for happiness for you and your children.

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