I remember feeling amazed and nervously excited when I descended the stairs in our tiny 2-bedroom apartment to tell my husband of 8 years I was pregnant. He looked up at me, “Really?!” Nodding, I confirmed what we’d been planning for about a year. We were thrilled.
I devoured all the books, the guided meditations that were supposed to help with birth, ate all the ginger things and was sad when I had to quit my job because of severe morning all-day-and-night sickness. Eventually I felt better with the aid of medication and tracked all the changes in my body and read details about the growing baby.
Over a decade ago, Jenny McCarthy could be seen all over spouting her doctor’s erroneous findings that vaccines cause autism. Back then, this was my worst fear; (and likely a fear of many parents-to-be) that something could be “wrong” with the life growing inside of me. I remember telling my friend at the time, “I pray that nothing like that happens to my baby.”
Jacob was born 4 days after our due date and was a hefty 9lb 11oz. He hit all the physical developmental milestones, had the most adorable smile, and was the center of our world. I struggled with breastfeeding and postpartum depression, but felt our “new normal” of life with a baby around 3-5 months.
As he grew, we noticed little things that, at the time, gave us no cause for concern. Things like his inability to be laid down on his back while asleep. He would startle awake and scream. We carried him and let him fall asleep in our Ergo baby carrier. We co-slept because as long as we were all getting sleep, the location didn’t really matter to us. He nursed and didn’t desire solid foods. Getting messy and exploring foods with fingers seemed not to be his thing but for just a handful of times. He wasn’t verbal until almost 3 after speech therapy interventions. We had taught him sign language and had developed our own unique way of communicating. We discovered his right eye blindness as we prepared for preschool and kindergarten. Jacob struggled at the dentist and doctor visits. We prepped him well in advance for changes in routine, as well as transitions from one activity to another. We adapted. We learned. We read and researched and asked questions.
Jacob was evaluated at 2, 5, and diagnosed with ADHD-inattattentive type (with Autism Spectrum Discorder verbiage in the paperwork, but not formally ASD diagnosed) at 8, and now at 10 we are looking forward to another comprehensive evaluation. His IQ is 133. He’s crazy smart, and loves to learn about things that interest him. He as a 504 plan in place at school for accommodations as needed. We are working with an occupational therapist who has taught us both.
Sitting in the car before an appointment, we were chatting before heading into “food school”.
“Mom. I want to work at Microsoft,” Jacob told me, veering off of whatever topic we were currently discussing.
“Really? Why is that?” I asked.
“Bill Gates is thought to be on the spectrum. Maybe I could work with him and help other people like us. Plus, I like computers.”
“I think you would be great at that.”
As he walked into the appointment it hit me how far we’ve traveled on this autism journey. How scared I was for him, and frustrated at times because life with someone on the spectrum isn’t always easy. I struggled (and sometimes still do) when people are judgmental or unkind, knowingly or not. He makes me laugh out loud at his literal way of thinking, his interpretations of figures of speech and his other little quirks. I love the protectiveness he feels for his sister. He has taught me compassion, patience, and to slow down and see things from another perspective, that different isn’t wrong, it’s just different.
Back then, I just didn’t know.
I didn’t know how much I could love another human. I didn’t know that autism spectrum disorder really sucks as a label because it doesn’t feel like “disorder”. I stopped asking the futile “Why?” and “What is the cause?” questions years ago. It doesn’t do any good and there are no satisfying answers. It just is. I didn’t know that I would one day be thankful for resources and knowledge and tools to help him navigate and understand the world.
I never thought that I would be thankful for autism.
That was then.
At the last exhibit during a group exercise, Jake was frustrated having not heard the instructions, then realizing he wouldn’t have any input in his group’s presentation as they worked. The tears started. (The other kids were not being overtly mean, but sometimes it’s easier to ignore people than to actively include them.)
She got down on the floor and engaged him. She didn’t have to. It would have been easier not to. She helped him help himself. She didn’t scold, embarrass or patronize. He didn’t have to have mom intervene. She was subtle and quiet.
Lori's Life and Other Stuff 