My Journey as a Special-Needs Mom
written by Abby Khou
It’s been only a year since my son Ethan was diagnosed with autism, and there is still a long journey ahead of us. As of now, he is in a preschool for kids with special needs at age 3. The path we’ve had to take started with a mourning of our ideal picture of what our child should be and the struggle to accept what his diagnosis would mean to our roles as parents. When we first began to see the autism “red flags” that my son exhibited, I was still in denial. I didn’t want to talk to anybody about it except my husband, and I was pushing everyone away and felt extremely isolated.
I would toggle between feeling hopeful and anxious. His doctor said, there are kids on the spectrum who outgrow their diagnosis. I saw the various options for early intervention, and out of the blue, when I couldn’t take the feeling of being alone anymore, I set up a meetup group for parents of kids with autism. A light seeped through the door that was slightly ajar for people to come in and share my experience. I met moms with children on the spectrum from ages 2-8, some of them yet to be diagnosed, and some of them having already undergone all kinds of therapy and early intervention. We had playdates with our kids, friendships were formed, and birthdays were celebrated. I joined communities of special-needs parents on Facebook, where I could learn from other parents’ experiences. I asked questions in my quest for services that my son could receive to better the quality of his life, and ours too! I also attended local support groups, including We Are Brave Together and the Parents Connection group in the Torrance Harbor Regional Center. I derived strength from these warrior mothers who fight for their children day-to-day, while still maintaining wholeness as individuals and thriving in their adult lives.
As I start 2020, I am filled with gratitude over the events of the past year. After a few months of coming to terms with Ethan’s autism, we took control to help propel him forward. We started physical therapy, occupational therapy, speech therapy at 19 months, then feeding therapy, ABA, and the Leaps and Bounds program at Pediatric Therapy Network at age 2. Currently at age 3, he is attending LAUNCH preschool. We are in awe of every bit of progress that he makes; from his first steps at 21 months, the first time he hummed, “Twinkle Twinkle Little Star,” his first spoken words at 28 months, good days in preschool when he made his OT proud, the first time he ate any new foods, and finally getting him off the bottle. The little successes were all preceded by a trail of frustration, failure, and fear – for every day we waited for Ethan to start walking, for every time he came short in his development as compared to typically developing kids, for every time he refused to eat something that I cooked for hours, and for every time he didn’t look whenever I would call out his name. The list is endless.
We must choose to enjoy the successes rather than weep about the failures. I have stopped looking at milestone charts and the age equivalent of his skill levels in OT and speech reports. I have gotten used to people asking why my son doesn’t speak yet or why he is not looking at them. We can only cheer him on as he meets each milestone, even if it takes him more time than others.
I mentioned fear; most of it is focused on fear of the future. Right now, we have it good – he is in the capable hands of the LAUNCH preschool staff, his ABA team, his feeding therapist and us, his doting parents. I ask myself sometimes, what happens when he starts kindergarten and goes to a regular school? How will he fare in an academic environment where most of the kids are typical? Will he ever develop normal speech? What happens when I am no longer around to take care of him? I think these are questions that all special-needs parents have asked themselves at one point or another. Each question leads to another, and there seems to be no answers! I have learned to take each day, one day at a time. We don’t know where we will be in 10 years, but we are doing everything we can to help Ethan with all that we have, and for now, that is enough.
At this period of my life, almost at the age of 40, I’ve worn many hats. Television writer. Starbucks barista. English professor. Social media manager. Public relations writer. Sister. Daughter. Friend. Wife. Mother. I would never have been able to guess that I would be wearing the hat of “autism parent” or “special-needs mom.” This journey has been unexpected, but now that I am in it, I cannot imagine it any other way. Becoming a special-needs mom has made me more resilient, courageous, patient, loving and open-minded to other people’s shortcomings. It has nurtured a desire in me to help special-needs kids as a Pediatric Occupational Therapist after I finish my education in a few years. It gave me a new sense of purpose and meaning. I am grateful for Ethan, and I truly love him no matter what.