By Susan E. Richardson(aka @alterna-mom on Twitter)
I would like to introduce you my daughter, Sahara Grace. Sahara is six years old and just started kindergarten. She likes her teacher, follows directions well and declares that she loves school each time she gets off of the yellow bus. Sahara is funny, witty and even sarcastic. She loves animals, bats, watermelon, Curious George and Mr. Bean. She enjoys riding her bike, swimming and playing hide-and-go-seek. She has self determination, a sense of adventure and the patience of a saint.
Sahara’s best friend is her eleven year old sister, Emily. Not only do they share the common bond of sisterhood, they also share the passion for horses, dinosaurs, water activities, chocolate, the outdoors and just about everything else they venture to do; in fact, they are almost inseparable. Daily my daughters inspire me to be a better mother and person!
Did I mention that Sahara also is diagnosed with Infantile Autism? Yes, I know you think it is primarily a boy’s condition (our pediatrician did too). Yes, I know you haven’t met a female on the spectrum (before I met Sahara, I hadn’t either.) Yes, I know she is beautiful (everyone says that when they don’t know what to say to me.)
What you cannot see today, it that Sahara was catatonic for the first four and a half years of her life. During this time we were desperately searching for answers for the challenges she experienced: non-responsiveness to sounds, no eye-contact, no speech, delayed motor skills, spinning, temper tantrums, pica, sensory overload etc. I begged professionals to listen to me that something was wrong with my baby, but none of them would concur.
I can remember a time when I could not even utter the word ‘autism’ (or as I called it back then, ‘The A word’). It was inconceivable, complex and, frankly, it scared the crap out of me. The pediatrician contributed to my denial and fears with statements like, “Some kids just don’t talk until they are 6,” or “Well, I see your concerns, but autism is primarily a boy’s condition” and, “Sahara is just a hard nut to crack.”
The formal diagnosis finally came on Halloween, 2008. The diagnosing psychologist told my husband and me that Sahara would never go to college, work or live independently and that she would never socialize, get married or have kids. We were told to prepare for a long road ahead of us and to start making plans for an uncertain future. Alone and anxious, I cried for days. I had a difficult decision to make; either I buy into the psychologist’s perspective or I set out to prove her wrong. Needless to say, I have worked day and night with my daughter since to successfully bring her out of the state of catatonia. We have come a long way, but have even a longer way to go.
During this time, I joined social networking sites and started to seek out other mothers that were faced with the same journey. I meet some of the most amazing women (and some men) with sons on the spectrum. Although their support helped me become empowered as a mother of a child with autism, I still knew having a girl on the spectrum had different challenges than having a boy. So, I continued to search to become connected with others who understood female autism issues.
That is when I stumbled upon Autism Women’s Network (AWN) on Twitter; which happens to be founded by women on the autism spectrum. I started to read their posts and stories. At first I was intrigue… how could these women be doing all the things we were told our daughter would never be able to do? How could these women have the same disadvantage in life that we were told our daughter had and be so articulate and, well, fabulous? It was empowering to connect with autistic women that were doing everything that we were told Sahara wouldn’t. I am grateful that my daughter has the advantage of having them in her life as role models.