“Children are a gift from the Lord; they are a reward from him” – Psalms 127:3
There has never been a day I grieved my children. I do not regret bringing them into this world. I do not doubt God has a precious purpose for them. They are happy, loud, silly, opinionated, wonderful boys who bless me daily with their ways. Daily, I thank God for their personalities, their kindness, and their joy.
Still, deep in my heart, there is this grief. This grief is something special needs’ parents keep hush-hush. We do not speak of it. However, it is there.
Why do I grieve?
• I grieve because my sons have yet to master “friend-making.”
• I grieve because I question the level of independence they will achieve.
• I grieve because the world genuinely hurts my boys at times.
• I grieve because they battle so fiercely to achieve what comes so easily for their peers.
• I grieve because they struggle to regulate their emotions.
• I grieve because I don’t know if anyone will see the beauty in them that I see so clearly.
• I grieve because the world is blind to the wonder of who they are.
• I grieve because my grief makes me feel guilty.
It seems that in some alternate reality, recognizing the bad in this means I don’t cherish their uniqueness. It appears that I don’t see the blessings, but I do. My children are alive; my children are healthy; my children are happy. They are so unique. I AM thankful. I AM blessed. So grief feels like denying who God is and what He has done in our lives.
That is just a short list. There are 100 worrisome, heart-breaking moments I will see this week alone, and that’s being optimistic. I know I am not alone in this grief, either. When my older son first received his diagnosis, I was given this precious piece of advice that has stuck with me to this day: “You grieve the child you thought you would have so you can embrace the one you do have.” It’s true, though. From the first positive pregnancy test, we have dreams for our children and no one’s dreams include, “Oh, I hope they are disabled so they can face more struggles!” No one wishes challenges on their loved ones, especially their children.
Please hear me when I say my children are a joy. They are the reason I have found my calling. They have increased one hundred-fold my trust in God. They make me laugh, they show great love. They are amazing. But today, I want you to learn from my experience what the parents of special needs children may be feeling in your church, and how you can help.
Photo credit: Jordan Whitt on Unsplash.com.
This is my reality: I walk into church on a Sunday morning with my 9-year-old and my 7-year-old. They consistently play with younger children. Kids their own age don’t really interact with my littles. Every friendship they have at church is one I have had to foster. I have had to teach other children how to interact with my boys. Thank you, Jesus, no one really bullies them, but neither are other children are drawn to them. This is more of a struggle for my strong-willed younger boy. He wants to do what he wants to do; if you don’t want to join, he will do it by himself and enjoy it regardless. Most of the time, he does just that. He plays by himself. Very often on Sundays, he comes home after church and asks me, “When are my friends going to want to play with me?” My heart breaks for him, and I answer with I don’t know.
Both of my boys compare themselves with other children. Sometimes, they truly believe—because they are not as smart as this girl, not as fast as that boy, or because it takes them so much more effort to remember scripture—that somehow means they are less.
I have to deal with how all this affects me emotionally. As much as I try not to, I also compare my boys with other children. It is absolutely not their personal failure that makes them slower to read, memorize scripture, or simply sit still. Since it is not their failure, it feels like I am failing these two little miracles God has given me. My brain says their failure has to be my fault. I often question if I am a good enough mother.
I do this all with a smile, even when I want to fall apart. When I make the decision to share this struggle, I face the real possibility of judgment from others. It’s as though these people truly believe I either regret having my children or I don’t trust God. Neither of those things are even slightly true.
So what can the church do for parents like me? How do the hands and feet of Christ hold and console a mama or a daddy who skillfully hide their heartbreak and grief? Here are five practical things everyone in the church—from the head pastor to the servant who works in the hidden ministries—can do to ease tension, pain, and grief.
Tell the parents they are doing a good job. If you have known them long enough to see growth in their children, point it out. Celebrate little victories with them, like when their fidget fanatic sits still for five minutes, or that sweet little one with an explosive temper when overstimulated chooses not to hit another child who is being an annoyance. From personal experience, when you cheer my child on, you are also cheering for me.
Invest in these children. This can be as big as a sleep-over or as little as, “Man, you looks so handsome today!” When they glow, we glow. Include them. Ask their opinions. Invite them to your child’s birthday. Make sure that this parent knows you want them around.
Teach your children about disabilities. Let them ask you questions and don’t silence them for being curious. If your little Susie asks you why my boy rocks himself, tell her it’s because it helps his body feel safe. Be honest about what he can and cannot do, and encourage her to play with him to help them both grow. Explain to them what a wheelchair is and that they are not scary. Tell them some people eat with tubes like we eat with forks and spoons. Educate them on sensory issues, and make it fun by adding sensory play to the lesson. Investing in acceptance and true compassion in your kids breeds a better world for mine.
Ask the parents if they need any help, but be specific. Could I bring you dinner? Can I watch the kids so you and your husband can go on a date? Invite them to hang out, because every parent of a special needs child is a person first. Sometimes we get so buried in being a caregiver to someone else, we forget that we deserve care, too.
Pray for, and when appropriate, with these parents. There is power in prayer. Pray that we have wisdom and grace. Pray we can find joy in all circumstances. Pray that we would not feel guilty about the grief. Praise God for our children. We need to know they are cherished and loved and prayed for.
We know our children are a gift from the Lord. We see amazing things in our children daily. However, special needs parenting is a unique challenge, one in which we often feel alone. But you can help.
In both big and small ways, you can support people who are struggling with this often silent grief that comes with parenting special needs children. I can promise you will be blessed for this. After all, He is a God who does not, “…forget our work and the love we show Him, as we have helped his people and continue to help them” Hebrews 6:10.
Joanna French is the special needs pastor at Flint Hills Church, Junction City, KS. Joanna and her husband Jairmie have two boys with autism. In 2017, Joanna started Flint Hills Embrace with the goal to make Flint Hills Church a place where everyone belongs. Why? Because we all have a place in God's plan.
