What does a child with Special Needs look like?
It looks like Katey, who kisses me on the shoulder in greeting, and loves movies and music. Trey, who always has a glimmer in his eye and a smirk of mischief on his face. Ethan gives big hugs. He is perseverant, and has a great sense of humor.
Emily is creative and loves art. She has empathy for others and a kind heart. Macey, who loves horseback riding and hugs. Luke loves cheese pizza and Ninja Turtles. He has a tender heart, and although he can be quiet, he is always listening.
Fifteen-month old Lincoln loves steamrolling all over the floor. His favorite toy is his soccer ball, and he loves music. Julianna, who is curious, and is always seeking out new friends. Samuel, who loves all things Minecraft and Star Wars, has a very witty sense of humor, and belly laughs at comedians Tim Hawkins and Jim Gaffigan. And Alena– she loves to be fancy and wants everyone to think she is funny.
These are the kids of Family Church–our kids. This is our family.
Recently Family Church offered a class called, Finding Hope in an Unexpected Journey. Special Needs parents came together to offer support, and to grieve in a unique way. We asked ourselves, “How do we find hope on a journey we haven’t planned for?”, “How do we accept a different reality than the one we expected?” And once we’ve accepted it, “how do we embrace the journey?” The daily challenges, the health issues, and the behaviors are not going to go away – so how do we find joy within it?
We are called to see beyond the challenges. There are treasures all along the way. Special needs equals special gifts. And in a very real way, we are called to live every day in the reality of God’s power.
But, am I confident in God? Or who I understand God to be? Do I believe Him?
As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.” John 9:1-3
Three years ago my husband and I took our youngest son to be assessed and we received a diagnosis. It was not exactly what we expected, and it didn’t suddenly make us experts on our child’s needs. So, I tried to continue on as normal by dealing with specific situations as they arose.
I rebelled and resisted and denied. And ultimately I chose discouragement and defeat.
My life was full of interrupted expectations. But through this class, and in this season, I have begun to accept and embrace my reality. God has reminded me that he doesn’t make mistakes and my child is not a problem to solve.
The LORD says, “I will guide you along the best pathway for your life. I will advise you and watch over you.” Psalm 32:8
I am constantly reminded that I am not equipped to do this job called parenting. I don’t have the skills or abilities that my child needs. It’s not built-in. But God has chosen me to be Samuel’s mom. Maybe because He wants to grow me, or use me to bless others. Maybe because I don’t have what it takes, and I will be driven to trust him–to act in absolute dependence—to see my need to turn to Him. Time after time. Day after day. Moment by moment.
So, I choose to trust. And I choose joy in the journey.
In his heart a man plans his course, but the Lord determines his steps. Proverbs 16:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness. Therefore, I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.” 2 Corinthians 12:9
At times our families feel isolated and alone, ashamed, angry, sad, resentful, embarrassed, overwhelmed, hopeless, helpless, frustrated, guilty. Many days all we can do is just survive. Some of us get stuck in depression. We withdraw from the rest of the world. As parents we become students, researchers and experts in areas we previously knew nothing about. We constantly have to make adjustments and develop new routines. Our life expectations have to be rearranged and reconstructed. Our priorities, our goals–everything changes.
Some of us feel like we don’t even fit in the special needs community, especially if our child looks “normal”. But special needs kiddos are individuals. No two are alike no matter what their diagnosis. Many of our children don’t have a choice about their actions or reactions. Our children have social and sensory issues that affect everything they do. They are constantly at war with their environment. Our kids struggle to communicate their needs.
How can Family Church care for these families?
Just ask, “How can I support you?” Take an interest in our kiddos. Realize that behavior issues are not necessarily about lack of discipline. Giving advice or information isn’t always helpful. Most of all, like you, we need relationship, community, inclusion—to belong.
God has done beautiful things through this class. These families have formed a bond that has resulted in ongoing support and connection. On Saturday, June 24th we will be meeting at River Forks park at 11 a.m. for a picnic. If you are part of a Special Needs family, we welcome you to join us.