Three years ago on this day, October 31, 2013, our lives changed. This was the day where our precious son Nolan received a diagnosis of being on the Autism Spectrum as a result of a 3 hour diagnostic visit at Helen DeVos Children’s Hospital (an appointment we nervously awaited for 6 months on a wait-list). Most people reading this will have a first reaction of heartache, possibly the thought of “I’m sorry.”
I’ll go on the record as saying we are not heartbroken and you don’t need to be sorry. Don’t feel bad if that was your initial response. I will also say that my heart hurt initially at the appointment and we sat stunned when we heard, “Your son has autism. There is no known cause and there is no known cure.” No amount of preparing could have calmed us down going into or coming out of this appointment. Questions swirled… “Will he ever talk?” “Will he ever have a friend?” “What do we do for school ahead?” “Will he live with us for the rest of our lives?”
However, as we climbed in the car to ride home from the appointment we looked in the backseat at our smiling Nolan and everything immediately felt right with the world. We knew that although life’s plans will take a turn, our God gave us such a great gift and beautiful blessing worth the “beautifully puzzling” journey we were entering.
One comment over the past few years that I won’t forget… I introduced Nolan to our pastor a while back and explained that Nolan is non-verbal and has autism. His instant reply was, “Isn’t it great that God is going to use your son to impact others in ways you can’t even imagine yet?”
I began to pray for that, daily. “Lord, help Laura and I to learn how to be the parents worthy of this beautiful boy you have given us. Provide ways for Nolan’s story to be used as a clear part of YOUR story Lord, so that others may know Christ through him. Give us patience when we struggle. Give us eyes to see each gain as monumental. Give us words to be his voice for others and give him curiosity to find his own voice along the way.”
Within the past few months of his journey he has started kindergarten alongside of his twin sister, Kathryn, at West Side Christian School (something we weren’t sure was possible even a year ago). There are aides that support him each step and challenge him to find his voice. Just this week we received a video of him counting to 10 more clearly than we’ve ever seen. He has been able to be a part of a video created by the CLC Network and Calvin College to educate & encourage churches to include everyone. This video has now been seen over 32,000 times! https://www.youtube.com/watch?v=G0iumi_CxL God continues to use Nolan in ways we didn’t and couldn’t anticipate.
We are grateful for many who have embraced Nolan’s journey alongside of us. For those just entering the first steps of a journey with a diagnosis I would encourage you to breathe deep and allow others to partner with you. Our family cannot thank Miss Luanne (former preschool teacher who took care of him for 3 years), Dr. Penning (speech therapist), Behavioral Therapists of West Michigan (ABA Therapist team), Team Nolan from Redeemer Presbyterian Church, our babysitting team, and the team at West Side Christian School. You deserve credit for the reason he can sing in chapel, count to 10, sit through a story-time, engage in playtime with friends, and much more.
Each day is unique in our life with Nolan. We wake up not sure totally what to expect. Literally, some days we walk into his room and he is sleeping on the floor without a blanket and his lights on and toys placed in straight lines everywhere. This is all part of our learning, part of the journey. We have found to embrace Nolan’s diversability and learn from the joy he has despite the challenges he faces. What a gift!
Here is a journal I wrote at night on October 31, 2013…
Two Telling Moments In 24 Hours:
October 30, 2013– the night Laura and I first heard our son Nolan completely say the sentence “I love you too!” It happened at bedtime as we were tucking him in. For many, they hear this phrase on a daily basis from their kids and may not see the significance in this moment. For our family we have been learning to walk a journey together where speech does not flow easily for Nolan and never has.
October 31, 2013– the day our son received a diagnosis placing him on the Autism Syndrome Disorder (ASD) spectrum. We visited Helen DeVos Children’s Hospital to consult with a team consisting of a speech pathologist, children’s psychologist, and a neurologist in an effort to determine if Nolan is only struggling with Speech Apraxia or if there are more insights and answers we could gain. We entered into this visit knowing that based on what we were seeing in Nolan there might be a chance he would be diagnosed on the Autism Syndrome Disorder (ASD) spectrum. This appointment was scheduled for just after noon and would last until just after 4:00PM in order to provide a larger perspective in the visit.
Leading up to the visit at the hospital, many thoughts went swirling through our minds and many questions were asked by our friends and family:
· How do you feel about this?
· Do you think you’re ready to hear if it is Autism?
· Can they cure Autism? Is there a medication that can reduce symptoms?
· Have we seen signs of growth in Nolan?
· What will you do if they say it is Autism?
· Will they know why Nolan shrieks and bobs up and down all the time?
· Will Nolan be able to catch up to his sister and other peers someday?
· How will others react to our son if he is “autistic”?
We now stand on the other side of this visit. We know more, yet we don’t feel any different that before the visit. Nolan is the same happy kid who can warm hearts and bring joy as he was before visit. He will continue to hear us say, “I love you” each night and it is our prayer that he will continue to grow in his language abilities to verbally say, “I love you too” back. Even if he doesn’t say it again for a while—we see his love for us each day.
In speaking with the team at the hospital, Nolan shows signs that place him on the ASD spectrum. He also shows a lot of encouraging signs that demonstrate social habits that are enduring and an energy that will help him grow. At this time in history there is a lot of research being done on Autism, but the cause is not known and there is not a cure. Some people on the ASD spectrum show huge gains to the point that their signs aren’t very noticeable to others. Other people on the ASD spectrum do not and there is no way to distinguish or predict how someone’s learning path will progress. There are proven interventions that help with Autism (speech therapy, occupational therapy, behavioral therapy, etc) and the earlier they are initiated the more success typically is seen.
We will not let Autism define our son. It presents a challenge he will face for the rest of his life at some level. However, we all have our challenges and prefer not to let them define us either. Nolan will continue to enjoy life to the fullest. He will continue to be a hard working kid. In the last few months we have seen him learn to jump on his own, practice alphabet letters, and gain patience and focus in story-times. Right now, Nolan is in a great early childhood special education program focused on his speech along with some physical goals. We will continue to boost his therapies in the upcoming months as he is able (we don’t want fatigue and we also want him to enjoy home life). His twin sister, Kathryn, will continue to be Nolan’s best friend ahead and share smiles with him from a “twin-language” that they speak and we can’t understand. She will be learning a lesson in life about challenges we face in a way that many other children do not have the opportunity to learn. As parents, we will advocate for our son by building awareness for those around us as well as ways to help.
All of these things are true and come from many swirling questions and thoughts of this week. However, the one thought that will remain at the top for Laura and me is that “we love our kids” and “they love us too”. October 30th was a God-created day full of beauty for us. October 31 was not much different. Two telling moments within 24 hours and both had a purpose. Each day is a gift. Each challenge presents opportunity. Every success experienced through opportunity provides a source of joy, which is a beautiful thing.
“No, in all these things we are more than conquerors through him who loved us.”