By Fatima Syed
“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
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.
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.