Being a parent has to be the most challenging, rewarding adventure a human can take in this life.
Being a parent of a child with autism takes that experience to the next level.
I know because I’ve been there.
Nate was 4 years old when his language, which had been slow to develop, disappeared completely. Prior to that juncture, he only had about 10 words – but we knew something was definitely wrong when those words suddenly vanished.
Like many people with autism, Nate’s inability to communicate manifested in many ways, mostly through very difficult, atypical behaviors. I was exhausted and exasperated most of the time just trying to work him through the heartbreaking frustration I knew he was feeling (while simultaneously processing my own emotions). At the same time, I was spending every “free” moment researching and pursuing every last traditional and alternative treatment option out there. As Nate grew bigger and stronger, getting out for any kind of break with him became impossible – and so too did access to respite care.
As a swimmer, I’ve always found solace in the water. My worries tend to float away as I glide through a lake, river, or pool. But without anyone to help buoy me up when the waters became murky or rough, I felt myself drowning.
Which meant Nate was also underwater – because, as a Mom of a child with special needs, let’s face it: I thought I was solely responsible for carrying him along. So when I was down or feeling like I hadn’t taken a breath, he probably felt the same.
But, as most parents one day figure out, I realized we didn’t have to go it alone. There are agencies that know exactly how to help. And once I came to accept that “Team Nate” could expand beyond our immediate family, everything changed.
Discovering the right program for Nate was like having a life jacket thrown out to us at our time of greatest need. I hadn’t even realized just how long we’d been flailing in the metaphorical waters of parenting.
Despite the fact that it was several states away, when I discovered Anderson Center for Autism, which happens to sit on the banks of the beautiful Hudson River in New York State, I knew we had found our way. From the moment we drove through those stately front gates that were designed to protect Anderson’s students, I was met with a warm, welcoming, joyful, clean, modern atmosphere that had amenities galore. Moreover, we were immediately comfortable with the people who walked that enchanting campus.
Placing my child in a full-time, residential center was not a decision I made lightly. For years, I had wanted to be the one to swim him to shore – every moment of every day. But at a certain point, we couldn’t provide Nate with the life that he deserves to have. And, like every parent finds out, it’s not about us. It’s about what our children most need from us.
So, in February of 2020, just weeks before a global health crisis turned our world upside down, my world was turned rightside-up when we arrived to Anderson Center for Autism to bring Nate to his home away from home. A large Samsung screen greeted us as we made our way into the school on that first day, “WELCOME NATE.” My eyes became misty with gratitude as those two words came to life. I looked around at the smiling faces of the staff standing in that hallway under the welcome sign, who expressed those same sentiments with their kind, open hearts, and I felt the spirit of the place come through.
I was, at long last, buoyed up. On every level. After years of feeling as if I were drowning.
Since Nate moved to Anderson, I have so much more to give. I volunteer with the special needs ministry at my church. I continue to learn about autism. I’m considering career options that will allow me to take the depth of what I’ve learned to make a difference in the lives of others who face the same kinds of challenges.
And while I’m uncovering new ways to give, I see that Nate, likewise, has so much more to gain. Not only do I now have the strength, confidence, and energy that can make me the best Mom I can be, but Nate’s got an entire team of people who already feel like family, giving their all to him every day.
The adversity and adventure of being a mom to a child with autism has shaped my entire life. It truly requires a next-level kind of parenting – and living. And as we honor autism awareness this April, my hope is to inspire others to do their part to help children and families stay afloat.
Offer a hand. Remember that behaviors come from frustration and that parents and caregivers are “on” 24-7. Find a way to advocate for respite care. Look for opportunities to support nonprofit organizations like Anderson Center for Autism. Be the lifeboat we so desperately need. Be the person who brings a smile to a sweet face like Nate’s, or to a Mom like me whose spirit needs restoring.
Be the person who buoys up all of us families who are impacted by autism.
We’ll be grateful for years to come.