By Jennifer Lucas Young
My six-year-old daughter was diagnosed with high-functioning Autism in June 2016. After receiving the results of her neuropsych testing, I sat in my parked car and Googled "What is Autism" on my phone. I didn't know what it meant, what the range of possible outcomes was, and how our lives and our expectations of the future were going to change. Back in the office, the neuropsychiatrist had been very clear: your daughter is definitely on the Autism spectrum. I was not prepared in the least to be a special needs mom.
My daughter has a vivid imagination that sparks a bright light inside of her. It includes imaginary friends, make-believe stories with twists and turns, and whimsical art projects that include any type of material she can find in the house. She asks a ton of questions and is inspired to learn more when the answer sounds interesting. She frequently presents to others as “typical.”
Last month, I found myself thinking "what if" when my college-aged niece and nephew were at our house for pizza and a game night. We discussed their second semester classes, and what they might want to declare as their major. They expressed anxiety about making their final decision. I laughed and told them I switched my major four times before finally landing on Studio Art. I ultimately followed my passion in school, and had an utterly fantastic time doing so. I went on to pursue a successful career in corporate marketing, and that Studio Art degree was the stepping stone that seems so far behind me now.
But after the kids left, I wondered, what if I had a more "seasoned perspective" when making that decision? I'm not one for expressing regrets very often, but now, on a weekly basis, I find myself Googling terms and topics that I need to understand better. Terms like "Applied Behavioral Analysis," "Anxiety + Children + Treatment," and "What is Executive Functioning." The search results would be easier to process if I had a basic, foundational knowledge of the subject matter. Sometimes I wish I had chosen my college classes differently.
The exhausting part of parenting my daughter isn't that she's Autistic. It's that I still don't completely understand what that means. I've attended many presentations and seminars, advocacy trainings, special education law lectures, read recommended books, joined Facebook groups, and followed witty-yet-knowledgeable bloggers in order to better understand my daughter's neurological disorder.
If I knew back in college what I know now, I would have made choices so I'd be better prepared to sit in IEP meetings and understand all the lingo and terminology the specialists use to describe my daughter's abilities in the classroom. I would have pursued courses that covered Special Education, Early Childhood Development, Anatomy of the Brain, Child Psychology, Applied Behavioral Analysis, Pragmatic Language, Self-Regulation, and Social Thinking Methodology. I graduated from college knowing how to showcase my meticulously conceived paintings in an art gallery, yet I have no idea how to effectively communicate with my inflexible kindergartener when Market Basket is out of her favorite snack and the world feels very unfair.
Over time, and because of all the resources (including MGH Aspire) I've tapped into since June 2016, I've learned when and how to be more supportive of her at home. I've become her teacher, her ABA instructor, her psychologist, a social skills playmate, a special education advocate, her most discreet confidante, and her loudest voice. There are days when it feels like an excruciatingly long list of professional hats I need to wear in order to parent her well.
Currently, I'm a 43-year-old stay-at-home mom. And, to some degree, I've learned to effectively advocate for my daughter and I'm not afraid to speak up. I've surrounded our family with experts whom I dearly trust and feel completely comfortable confiding in. Yet I will always have a compelling need to know more, to learn more, and understand more in order to be a good mom.
The other day while I pondered her question, "What does a lion eat in Africa?" she was quick to interject, "Don't worry mom. If you don't know, you can just Google it." If only everything came that easily.