A year ago today, Ava was diagnosed with autism. We took her to a developmental pediatrician who broke the news to us after examining Ava for about an hour. I remember her saying:
"Ava is on the autism spectrum. I have no crystal ball. I can't tell you if she will get married, go to college or have a job. We just have to see what happens."
It's a year later. Ava has made progress. But she still has significant developmental delays and has been given an autism, apraxia, sensory and auditory processing disorder diagnosis, not just a spectrum diagnosis. A year ago, she did nothing but babble but now she labels a few objects. She is still considered non-verbal and does not call my name. She has great imaginative play skills. She does some imitation as well. But she still does not turn her head when I call her name, follow directions or make consistent eye contact. She has learned to read, spell and match beyond a 2 year-old level. And occasionally, she will say, "I YOVE YOU!"
Progress is slow. It is hard not to get discouraged. Will she always be like this? Will she ever learn to go to the potty by herself or at least not be supervised 100% of the day? Will she have friends? Will she play with other children? Will she be bullied or made fun of in school? Will she ever be in school with typically developing children? Will she be in Brownies, soccer or marching band? Will I watch her walk up to the podium to accept her diploma without an aide?
Not having a crystal ball makes dreaming of the future a waste of time. Should I fantasize about Ava going to Harvard? Or perhaps getting into a REALLY good state-funded group home? I don't bother discussing the common pursuits with moms of typical children - "Which preschool should I chose?", "How long should her nap be?", "When is a good time for a play date?" All I know is that those questions do not pertain to my child. Ava is in therapy all day long and I am left out of some of the joys of parenting. I scrapped my subscription to Parents Magazine because 99% of the articles are for typical children only - "Stopping Tantrums", "Sleep Training Tips", "Potty Training in 1 Day", "Even Your Toddler Can Habla Espanol"...
A year of living with an autism diagnosis has taught me a great deal. I know that in order for a child to improve, you have to fight for services tooth and nail. You have to line up your ducks perfectly and hope for the stars to be aligned to get your child into a program at the age of three that will suit his/her needs. If you do not, your child faces regression and may not acquire the skills to be a productive member of society. There are not enough therapists, educators or administrators equipped to handle the growing burden of autism. The professionals committed to helping the autistic population can be excellent or terrible at their jobs. But for the most part, we have encountered people who are truly caring and give their heart and souls to their profession.
I've also learned that people can be pretty mean, cruel and ignorant when it comes to autism. People can also be compassionate, generous and understanding beyond anything I would have expected. Autism is baffling - and it's invasion into one's life can be isolating and bonding at the same time. I've had friends and family members retreat from our lives, and I've had others join with us and extend their hands to help. I've met other parents with autistic children and shared their joys and their heartaches.
Having autism in our lives 24 hours a day for 365 days has taught me more about the disorder than I would ever expect to learn. I feel like I have earned a doctorate in advocacy, applied behavioral analysis and scientific research. Every day I read about studies concerning autism causes and treatment. I read blogs written by other parents of autistic children. My entire life is autism. I never get a chance to come up for air and know what it is like not to have autism in my life. I spend hours every day, writing emails, making phone calls, attending lectures - all about autism and getting Ava what she needs to be a happy, functioning member of society.
Autism has forced me to enjoy little milestones. When Ava said "cracker" for the first time in Trader Joe's last summer, I almost fell on the floor. Ava kisses and hugs her Bunny, her favorite toy, which shows she can express emotion and feeling. If Ava does not cry when her therapist comes in the room, I am overjoyed. I realize I have to look at the small successes rather than the big picture. I see the beauty and miracle in the small steps.
I hope the next year brings more progress for Ava. I hope I learn even more. I hope to see others more educated and compassionate concerning autism. I hope next year is a good year for Ava.