So I promised a post about *why* we chose May 1 as opening day for Autistic Women’s Collective. When Jen, Silver and I “sat down” (read: opened a group chat, haha) and discussed logistics, we decided April would be our prep time and that May would be a good time to officially open the community. Jen asked for possible dates and I piped in with “May 1 is Violet’s birthday.” Thus, May 1st became the day AWC would open its doors to you!
But wait; who is Violet?
Violet is my youngest daughter. Violet has a very special story I’d like to share.
When my husband and I decided to try for our 2nd child together, we got pregnant within a few months and miscarried. We were devastated, but ended up pregnant again just 19 days later. From early on in that pregnancy we knew that our child was “different.” (I would like to point out that at the time, I was ignorant about many things that I’m well researched on now. I’d like you to take a few things I say in the next paragraphs as experiences that shaped who we are and have brought us to this understanding we have now) I had a very strong notion that I was not supposed to immunize this child, despite the fact that our older 2 were fully immunized. I nervously had the discussion with my husband, who agreed that he had the same anxiety over the subject. At that point the word ‘autism’ was forming itself in our minds. Since the rates of diagnosis at that time were 5:1 favoring boys, we were pretty sure that our child was going to be a boy.
Approximately 15 weeks later we found out, to our surprise, that our child would be a 3rd daughter! At this point I rather threw the idea of autism out the window and forgot about my concerns, though we decided to delay her immunizations. The rest of my pregnancy was my easiest. She was a calm baby in utero and loved music, especially Dave Matthews Band! She was very sensitive to light and sound and would respond to outside stimuli in the most loving, understanding way. We decided to name her Violet after the oldest sibling in A Series of Unfortunate Events-a book series very dear to our hearts-because we knew she would be cunning and resourceful and lovely and a warrior spirit.
Violet was born at a birth center a week late. She came into this world suddenly and quickly. She has been the same ever since…quiet and contemplative until she is absolutely ready to do something. Then it’s getting done RIGHT.NOW.
Violet was the calmest baby I have ever met in my life. She was snuggly and joyful. She smiled at everything and everyone. She loved to be warm and cuddled against someone, even in our 100+ degree Texas heat. She communicated with her entire body and all her soul, it seemed. She took particular interest in watching my husband work, I always joked with him that if anyone helped him restore cars, it would be Violet.
As Violet grew and became mobile, she was constantly into things. She was also *very* quiet about it, so often she pulled off toddler heists without our knowing until it was too late. She was stubborn and would only do something asked of her if we made it seem like she was helping in some way. Again, we joked that she was like my husband, who we liken to the “secret squirrel” and we just parented her differently and accordingly. She flourished.
Her younger brother came into the world when she was only 17 months old and they have been fast friends ever since. It was around that age she attended her first program outside of home. She was one of only 2 girls in a class of 11 and the youngest in the room, to boot. Despite that, she systematically “beat up” every boy in the class and was often off playing by herself.
We took her for her first immunizations at 26 months and afterwards she had large welts on her legs at the injection sites for 6 weeks, accompanied by fevers on and off and general crankiness as well as regression in her language and communication. Our previously calm child began being more and more aggressive and “screamy.” We saw that happen 4 times over the course of a year before we decided to lay off. We have since determined that Violet is very sensitive to toxins, like her mommy.
We lost our 5th pregnancy the summer after Violet turned 3 and decided to never have another birth child. We did, however, decide a year later we would try to adopt. When we attended a weekend long seminar on parenting “children from hard places” we realized that Violet fit many of the descriptors in Sensory Processing Disorder. By this point, we had heard from numerous friends that Violet was a “difficult” child, but we pressed on, always parenting her according to her unique needs and succeeding well enough to feel that we didn’t need any outside help. (We strongly suggest The Connected Child by Dr Karyn Purvis to ANY parent, but especially parents of adopted, traumatized or ASC children)
Between June 2012 and May 2013, our pediatrician referred us to the local autism clinic not once, not twice, but FOUR times. Each time I secretly flipped her off for being a jerk after what was always a harrowing visit with 2 toddlers in tow. I really did not understand why she would try to refer us there.
It was spring of 2013 when a friend of mine suggested I watch “The Lady who Thinks Like a Cow” and I watched Temple Grandin’s account of her life in wonder as I recounted trait after trait that described Violet to a “T.” My friend and I discussed it, but being as Violet was still thriving under our wing, we let our suspicions pass.
One day, as my husband was looking through old pictures and videos, he called me to the computer. He showed me a picture of Violet at each of her birthday’s until that point (we were nearly about to celebrate her 5th) and when he flipped back to her first birthday he said, “look how much more alert she was…look how much more engaged…” My husband is very reluctant to label anything, so I took his suggestion to heart and we began researching autism ad nauseum. Part of our reluctance to come to the idea was that she didn’t fit what we saw as autism. She was nothing like what we had heard through the media! She showed us all great love and she was so smart and funny! How could she possibly be autistic? Still, we could no longer ignore the signs.
That summer our family moved to Upstate New York and we enrolled our girls in a summer program there. While enrolled, Violet did not get along with the kids her age. She made exactly 1 friend, who was a disabled boy. The other kids would hit her or shove her away. She repeatedly snuck away from the group and frightened the leaders. She didn’t want to participate in the programs with the other children. When they would go to the beach, Violet would walk further and further into the water, up to her nose, even though she couldn’t swim. With all of this in mind, we watched her on a playground one day and saw that she played solely with her brother and sister. When they would find another friend to play with, Violet would play by herself, or get aggressive with her siblings. It was then we decided to make that call to the autism center. We knew we didn’t have the tools in our toolbox to help her overcome this.
We first talked with Dr Lisa in September 2013, but couldn’t have an appointment until November when we moved back. During that time I wrote down Violet’s every “odd” behavior and researched the heck out of childhood autism. In November of 2013 she was given an official diagnosis of PDD-NOS with Sensory Integration Disorder.
Boy have our lives and perceptions changed because of this child! In 6 short months our eyes have opened more than we could have ever dreamed. After determining that I probably couldn’t see how “difficult” she was because I understand her on a very deep level and reading loads of books and blogs by adult autists, I got my own diagnosis in February of 2014 and the rest is very recent history. Sometimes I blink and wonder how we got to this point from where we started, but most of the time I just *know* that I felt it in my bones from the time of her conception-that this was going to be our destiny together.
On May 1st, Violet will be 6 years old. I believe nothing better could mark the day of her birth-the day she began changing the wide world she dwells in-than to open a groundbreaking sisterhood for Autistic women and mothers of Autistic girls.
And so now I tell you, (again. This is my special interest, after all! ha!) what my goal is with AWC. My short-term goal is for women on the spectrum to find a safe place to discover who they are in sisterhood. My medium-term goal is to see mothers of girls on the spectrum raise daughters that aren’t riddled with the self-doubt so many of us have experienced. My long-term goal is to see the world drastically changed for my girl. A world where she is accepted and appreciated for who she is and what she has to offer. Her gifts are unique and important. She will also need some accommodation. She’s been lucky to have a mom and dad who parented with intuition, but many in the world are not intuitive about autism…yet. My goal is to see it become so; for me, for Violet, and for every woman and girl like us!
I hope you will join us!