Choose Joy: Our Autism Story
April is Autism Awareness Month. In 2020, the CDC released the most current statistic of people who are diagnosed with Autism Spectrum Disorder. 1 in 54. As I write that, all I can picture is our Scottie’s face.
As I reflect on our journey with Scottie, three themes emerge.
1) Love - We love who she is with all of the hard parts because she is created in the image of God. She loves well. She loves big. She loves unconditionally. She is worthy of love.
2) More - We know that God used Scottie to teach us to hope for MORE and to pray for MORE.
3) Joy - We choose joy over fear. Over grief. Over frustration.
Diving into this idea of choosing joy, I am reminded that this is the choice that propels us forward every single day. When she is struggling with her anxiety and OCD, we choose joy. When we are spinning out thinking about what life will look like in 20 years, we choose joy. When we are making hard decisions because it is the right thing for Scottie, we choose joy.
Choosing joy is in fact A CHOICE.
“Consider it a great joy, my brothers and sisters, whenever you experience various trials, because you know that the testing of your faith produces endurance.”
It is important that I don’t create a picture that living with autism is easy. Listening to Scottie cry from frustration because her little dog toys aren’t laying perfectly in a plastic tub is FRUSTRATING. Using all of my reasoning skills, I explain that they will never ever lay perfectly because they are different shapes and sizes. Yet all of that reasoning means nothing because she cannot move past it. She is mad. She is frustrated.
Watching our other kiddos experience a heightened awareness of how other people are reacting to Scottie while we are public is hard. They are being molded into amazing human beings, but this molding process sometimes feels like you are in a freaking furnace. The molding hurts. The molding is difficult to articulate. The molding isn’t always wanted because quite frankly it isn’t easy and fun.
Grieving our hopes and dreams of what her future would have looked like isn’t an easy process because it is in fact a process. Just when you think you have grieved all that you can grieve, another thing pops up. Scottie turned 16 a few weeks ago and while other children are getting their driver’s license, we are still holding her hand when we cross the road. The grieving continues. When I shave her legs each week, I am over it. Done because I don’t want to be responsible for her hygiene at the age of 16 because she is a freaking young woman. The grieving continues. When I hand Zoey my phone so she can Facetime a friend from Texas, I am disappointed that Scottie doesn’t have friends her age to Facetime The grieving continues.
Yet - we choose joy. We have experienced what happens when we choose joy over the grief. We know that through the trials and difficult parts we have been given a beautiful gift. We are learning what it means to join hands, encourage one another, and accept a person freely and openly. During these trials, the joy we have received from Scottie is so immense that I could never string the right words together in a way that would really explain it. You must experience it. We will choose joy during the trials.
“For I have great joy and encouragement from your love, because the hearts of the saints have been refreshed through you, brother.”
Scottie’s journey is filled with amazing human beings who have walked alongside us. They have encouraged us when we needed it most. The acceptance and love for our daughter illustrates a picture of community. Looking back over the first 16 years, I see faces from the beginning to now. Our family provided an incredible support system, but in God’s kindness, He provided an extended community to support us. Regardless of where we have lived, God placed people in our path. (These are just a few names to illustrate how different people stepped into the gap.)
Christi, Michelle, Tara, Jennifer, and Jill - In the early years, these are a few of my friends who listened to me as I wrestled with her many delays, evaluations, and testing while looking for answers. They loved our entire family so well.
Kristie, Grady, Liz and Jessie - When we packed our family and headed to a new city to help plant a church, they stepped into our lives in such a way that they gave us stability and comfort knowing that they would accept Scottie as she was and we could trust our kids to be encouraged and safe in their hands.
Jennifer, David, Jackie and Sonny (and their kids) - We again transitioned to a new church and community and were fighting the public school system trying to make the best decision for Scottie. They saw Scottie in such a way that we knew that they understood and enjoyed her. They were on our side. They dove in and loved and encouraged us well.
Jacque - We move our littles to another country to serve as missionaries, and Jacque befriended our girl. She was already my friend, but she chose to step in and do life with us - to do life with Scottie. Cooking. Talking. Errand running. Taking selfies. She is her buddy, and we are not alone.
Do you have a family in your life that would benefit from intentional actions and words of encouragement? Do you know someone raising a child with special needs? I cannot stress enough the power of your words and actions because they will provide them with the refreshment they need to get through each and every day. That refreshment is ultimately one of the biggest reasons they are able to choose joy.
“Now may the God of hope fill you with all joy and peace as you believe so that you may overflow with hope by the power of the Holy Spirit.”
When we were in the midst of developmental pediatrician appointments, testing, and evaluations, many emotions surfaced. The experts would shower us with labels. Nevers. Suggestions. Limitations. The one statement that kept us centered was: We will accept reality, but hope for the best.
Our hope was that we loved and followed a God who labeled our daughter as His child, loved, and worthy. We read stories about a God of miracles not a God of nevers. We searched for discernment as we made decisions leaning on God who freely gives wisdom to those who ask. We listened to the sweet prayers of our Scottie as she talked to her Abba Father with complete trust and acceptance and we envied her faith. Her Jesus did not give her limitations because His power is limitless. Our God filled us with such hope and that hope gave us JOY and peace. Because we walk around every day as a dwelling place for the Holy Spirit, we have been able to parent and love her in and through His power. And the power of the Holy Spirit fills us with so much hope that the hope overflows - it is abundant. Part of choosing joy is waking up and choosing Jesus. EVERY. SINGLE. DAY. It is a choice. A choice that is rarely easy and trial free. A choice that requires sacrifice.
Joy and trials can co-exist.
Joy and frustrations can co-exist.
Joy and grief can co-exist.
Joy and uncertainty can co-exist.
It is not an either/or but a both/and posture.
The choice to follow a God of hope fills our lives with joy.
I will choose joy. I will choose to love and serve Scottie (and our other kiddos) for all of my days believing that joy is a choice, My hope and prayer for my children is that they would always choose joy, and I know that it always starts with me. God extended a beautiful kindness towards our family through His gift of Scottie - I am so, so thankful. This morning, I will choose joy. And tomorrow,,, I will choose it again.