TO MY DAUGHTERS: Love in the Chaos of Autism
To Bianca, who taught me about autism.
Bianca taught herself to read by the time she was four. I was impressed by this feat, but chalked it up to the fact that Bianca’s father and I are both readers, with graduate educations. Of course, role modeling couldn’t explain everything since Bianca is adopted.
I used to enjoy Bianca’s reading and her intense hyper-focus on her passions, such as art and music and dinosaurs. She drew incessantly, so I learned to stock up on drawing supplies. She had a library card at age five. Heaven forbid she ever left the house without a book to read. But if we forgot the drawing tablet, Bianca would draw on restaurant table napkins.
By the time Bianca was six I realized she wasn’t like other children. By then we had adopted Phoebe. By the time she turned three Phoebe was doing all of the normal things Neuro-Typical children do, but Bianca was different. For example, Bianca thought nothing of appearing at the front door to answer the bell, dressed in little more than two silk scarves tied together around her neck. Soon it would be obvious to me that she was on the Autism Spectrum.
When I recognized Bianca’s autism, I realized why she reminded me so much of my mother, Irene. I used to joke with Bianca that she was my mother reincarnated. They both read incessantly and were super dedicated to their passions (or special interests). Both were like absent minded professors, incredibly smart but socially clueless.
Once I saw the pattern, I could see it in my husband too. I was married to a man with High Functioning Autism (although he has not been formally diagnosed). I had been raised by an autistic mother, married an autistic man, and adopted an autistic child. Talk about karma! I was destined to invest my professional life in this work.
To Phoebe, my greatest teacher.
In spite of all of this discovery, Phoebe was my greatest teacher. Without Phoebe, I may still be puzzling over the family dynamics. Phoebe was the exact opposite of her sister and father. She was always playful, engaging, and adventurous . She loved to chat with me, even as a young child. She taught herself to ride her bike at age six, when her older sister was terrified to ride ever! Phoebe showed me that there is more to life than the esoteric interests of my “Aspie” daughter and husband.
But as time wore on, Phoebe also showed the signs of severe stress as a result of living sandwiched between a parent and a sibling with Autism Spectrum Disorder. By middle school she struggled academically even though she was quite bright. By high school she was choosing the worst boyfriends. She was angry and sullen and depressed. I was heartbroken and I felt like a failure.
It is out of this heartbreak that I started writing my books. I researched autism to be sure, but more importantly I wanted to know how to help Phoebe cope with love in the chaos that autism causes a family, particularly the Neuro-Typical family members.
It took me a bit longer to realize that I needed help too. Mothers are like that. We go to the ends of the Earth for our children, only to discover when we get there that we are worn to a frazzle.
This is a long but important dedication. To Bianca I am grateful for showing me what autism looks like in a gifted child/teen. To Phoebe, I am grateful for showing me that we Neuro-Typicals need lots of support to last in these very tough relationships. To both of my beautiful, smart daughters, I am forever grateful that you taught me two important things:
- — Love matters.
- — My life matters.
Love you to the Moon and Back,