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
My 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
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.
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.
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.