[Editor's note: Saba Torabian is a Bay Area mother, instructor at San Jose State University, and Founder & CEO, CARE Foundation www.careautismfoundation.com. This post first appeared on HuffPost and is reprinted here with the author's permission.]
For years I have kept journal of my daily life on how I live and survive a challenging life of a mother of a boy with autism. Recently I have found out that my younger one might also be affected by autism. Today after reading the amazing blog of Katherine Sanford “I am 1 in 34”, I finally got inspired to put my writings into a short blog and send it to Huffington in the hopes of not only giving awareness to the public on what goes on in the life of a mother of two kids with autism, but also pass this message to the mothers who are affected by autism more than once that they are not alone in how they think and feel.
We know that 1 in 68 child in the United States is affected by autism. As Katherine says in her blog, “each one of those children has two parents who also carry that diagnosis with them, always”. That makes it 1 in 34 parent who is affected by autism in the U.S.
But what about the parents who have two children and both of them are affected by autism? New research shows that parents who have a child with autism have about a 1 in 5 chance of having a second child with autism. This is the club I would like to call the “1 in 5 club”.
Having a child with autism is one thing. Having more than one child and no typical children in the house is completely another thing. If you happen to be the member of my “1 in 5 club”, who has gone through all the difficulties of pregnancies, child birth, breastfeeding, sleep deprivation, etc. but never experienced “normal parenting”, I assume you can relate to the below list of feelings, thoughts, and emotions you go through on daily basis:
- When you wonder what the simple voice of “mommy” sounds like. When you wish you could close your eyes for once before you die and hear one of them say “mommy, look at me” in a fluent and spontaneous form of language.
- After I got pregnant with my younger one, Ryan, when Cameron was only 24 months old and we still had no idea Cameron had autism, my then-husband would laugh and say “you are a parent with one kid, but a referee with two”. As funny and true as that might have sounded, we never had to worry about that in our home! You are a member of my “1 in 5 club” when you really wonder how it would really feel to have your two kids fight over toys or verbally argue and you are expected to act as a referee. No, you never worry about learning the politics of being a fair referee because they never care enough about the toys or have never developed enough language to argue.
- Similarly, you wonder how sibling competition and jealousy between your children would feel like. There is no competition or jealousy!
- When almost all the people you know said to you “I do not know how you do it” or “you must be an extremely strong woman”.
- When you have definitely faced people who have asked you “how come you decided to get pregnant with your second child when you knew your first has autism, isn’t autism genetic?”
- When you go through the motions of daily life fighting with insurance companies for coverage, school districts for the best classroom placements, and spending most of what you make on therapies and services for your children and wonder “how tough can a human being get”!
- When most of your friends and co-workers (and in my case, students) are only aware of your older one having autism and you still see their look of empathy and sadness in their faces and wonder how you are going to ever tell them that your younger one might also be affected.
- When you look at the innocent, beautiful, and kind faces of your kids and wonder who is really going to look after them when you are gone! They do not even have a typical sibling to check on them once in a while.
The list obviously goes on. If you know any of the above feelings, then you are a mother who belongs to the “1 in 5 club”. As Katherine Sanford says: “No one wants to join this club” but it is not your choice. “Once in, you are a member for life”.
Despite all that, I look at Cameron and Ryan and wonder what would I be without them. Would I be the person who travels 7000 miles across the globe as a volunteer to give autism awareness talks? Would I become the selfless person who opens up my heart to anyone and anything? And most importantly, would I ever learn what unconditional love means when I never reciprocally hear “mommy, I love you too”? Rather it is their eyes that tell me how much they sincerely and truthfully love me. Once autistic or a parent of a child with autism, you never lie, you never cheat, and you never claim things that are not true.