A Letter to the Mom Whose Child with Autism Lives Away from Home
May 1st, 2019
As we round the corner to Mother’s Day, I want to give you an extra pat on the back. While other moms are getting reservations for Sunday brunch, you’re probably planning a day trip to see your child with Autism at his or her residential center. I know it’s hard, and I’m right there with you. There’s a special kinship that connects all of us moms of children with autism to one another, particularly those of us who had to enroll our children in residential programs. You’re not alone, even though it probably feels that way much of the time.
I’ll never forget the day my son Owen was diagnosed with Autism Spectrum Disorder or the mix of complex emotions that followed. I’m sure you remember this day with your child quite vividly too. As if being a parent weren’t already difficult enough, then you find out that a new level of parenting is going to be required. It shakes you to the core, doesn’t it?
On some strange level though, it was a relief to have answers to lingering questions that persisted in my head but that I didn’t necessarily want to pose. The diagnosis was also accompanied by unprecedented feelings of confusion and grief. It was a day that marked a new journey. Everything seemed to be described as either “before Owen’s diagnosis” or “after his diagnosis,” as if it were a quiet, invisible line that separated a past life and a past version of myself from everything that developed thereafter. I’m guessing you understand what I mean.
I know you’re just like me in your quest to do absolutely anything that might support the development and happiness of your child with Autism and your entire family. I know the pain of trying countless therapies and vitamins without success. I know the exhaustion of attending every possible conference, reading every possible book, and doing so while dealing with sleepless nights. I know the heartache that comes with not being able to be fully present to the rest of the family at times, and having to say ‘no’ to invitations from lifelong friends. I know the sadness that comes from my child’s inability to verbalize what he’s thinking, feeling, or wanting. I know what it’s like to fear what the future holds or be in a state of angst about how you’re even going to get through the day.
I also know that residential placement has to be one of the most difficult decisions you could ever make.
I know because I’ve been there. Sometime around the onset of puberty, Owen just became too difficult to manage. We sat down with our school district and told them that school and home ABA hours simply weren’t enough to teach Owen to be his most productive self. Coincidentally, it was right around Mother’s Day, 6 years ago, that our district sent out packets to several different schools in New York. Only two schools agreed to meet Owen and our family.
An avid knitter, I’d often use the annual NY Sheep and Wool Festival as a retreat for myself. Managing life with Owen wasn’t easy; I needed that time to pursue my own passion; I’m hoping you’ve taken breaks for yourself along the way, too. And when I did go, I’d pass by Anderson Center for Autism. Even from outside the gates, the campus looked beautiful. And, fortunately for us, Anderson Center for Autism was one of the schools that agreed to meet Owen.
What I discovered inside those gates was even more amazing. I remember when we brought Owen for his first visit (Anderson was 2.5 hours away from our home). Owen took his pillow out the car; we think he thought Anderson was a hotel. The admission process was pretty intense but the staff were caring and welcoming; they were there to help navigate what was one of the most difficult decisions we could possibly face as parents.
Owen was accepted, and I’m guessing you know what a bittersweet moment THAT was. We knew Anderson had a great program and were so impressed with their attention to every detail. To give you an example, I noticed that they have a vocational wing in the Education Center with a bed, where students with Autism learn to make the bed. They have a washer and dryer and teach kids to do laundry. They also have the kids manage inventory for their houses: paper towels, toothpaste, etc.; on top of this and all of the educational and therapeutic opportunities, they even showed us an incredible recreation program. Opportunities galore, right?
I know that when your friends and family hear that you’re exploring a place like this, they try so hard to focus on all of those positives. And while you can wrap your head around all of that intellectually, nothing can help you process what’s happening in your heart.
The day we brought Owen to his new home and school, our whole family went. We dropped him off in the Education Center. A peer brought him to his new classroom and we walked down to his new house. We decorated his room, put his clothes away, and then we had to drive away. You know how heartwrenching that is; I understand what you’ve been through.
Owen has minimal speech, and it is mostly just requesting food items: “Chips, please.” So, we couldn’t speak to him on the phone to hear how is day was but the teacher and the house manager were amazing about communicating how he was doing. He did request “mommy/daddy” and that was hard. If your child struggles with verbal communication too, I’m sure you get it. People can’t even imagine what it’s like to NOT know what your child needs.
But here’s the thing. And hopefully you had the same experience in your residential program. Owen’s transition to Anderson Center for Autism was so much smoother than I ever imagined. When we visited the first time, he was happy to see us. But when it was time for us to go, he was also happy to return to his residence. “Bye, see you later!” After all the grieving, some relief.
The sadness reveals itself – sometimes in predictable ways, and sometimes when you least expect it. That’s how it’s been for me. After having him home for a visit, I’d get to a certain point on the highway after we dropped him off and just cry. Eventually, as time went by, we would call and Owen was out– at the movies, playing basketball, roller skating or on a campus walk. I chuckle to myself thinking about how Owen does more things than I could ever imagine or hope for–he’s even been to the prom! Once a super-picky eater, he now eats meat and veggies and is no longer afraid of the doctor.
I know you have your own story that’s unique to your child and family. I’m guessing there are some parallels. I’m guessing it’s been a journey of overwhelming emotion. I’m guessing you’re one of the strongest people anyone in your community knows. And I’m guessing that your child is able to live a more productive, fulfilling life because of the heartbreaking decisions and sacrifices you’ve had to make.
And on Mother’s Day, I want you to know that I honor you. Although we may not know one another, I know so much of your pain, your anxieties, your heartbreaks, and your joys. You’re an awesome mom for making the tough choices. I hope you know that today and every day.
Happy Mother’s Day,