“God gives special children to special parents.” Those were the words that a well-meaning friend said after hearing that our daughter had Down Syndrome. My first response was, “I don’t want to be special, I just want to be normal.” I had so many feelings but special was not one of them. It is easy to give a cliche. What do you say to parents who learn of their child’s special needs? Here are some thoughts based on my own experience to help you know what to say to special needs parents.

What do you say when you don’t know what to say?

The quick answer is it depends. It might be not to say much at all.

Some of what you do and say might depend on the relationship that you have with that person. How deep is your relationship? Do you have a strong relationship that allows you to speak deep truths?

Some of what you can say might depend on your own experiences. Feel free to share your own experiences if you feel it is would be helpful. Listen to the individual. At first, I wasn’t ready to hear all the experiences that others had to share. Later, I was and went looking for others who understand. Tell them, “When you are ready, I can share my experiences with whatever.” Give the people the option to say no or ask questions.

“Miss K doesn’t have the same thing as Sam.” My nephew was confused. He had been told that his cousin on his dad’s side, K, had the same genetic disorder as his cousin on his mom’s side.  When he compared them they were very different. Yes, they do have the same genetic disorder, Down Syndrome, but they are individuals and impacted differently. Be careful to compare.

Listen

Listen to what that person is saying. Gently ask questions that might help you to understand what they are thinking and feeling. Let them talk. Listening can help you to know how to pray or how to encourage them.

Listen to God. What is God telling you to say? What does God say that can be a comfort or a challenge? Know the truth about God in regards to special needs.

NaiNai was one of the people that God put in my life at that time. She just sat and listened to us. That was the beginning of a relationship that has continued for years to come. The relationship began with listening but went beyond listening.

Pray

I believe in the power of prayer. I can’t tell you how much of an encouragement it was to us knowing that people were praying in the days after Miss K was born. There was a group of Christians at the hospital that prayed for her. The Thursday afternoon mission prayer meeting prayed for her. I believe that prayer was critical in her life. It was a Thursday afternoon that the heart catheterization was performed. That was the day it almost all ended but God answered prayer.

Do you believe in the power of prayer? Tell them you are praying for them. Pray for the parents, the medical staff, the child, and those around them. Pray for God’s will, God’s comfort, wisdom, strength, love, and peace. There is comfort when you hear people praying aloud so pray with the parents. There is something powerful to hear the prayers of others.

Practically Serve

Actions speak so loud. Actions can say what our words fail to convey. Be the physical help that they might need. It could be meals, rides, cleaning, doing laundry, running errands, or babysitting. It might not seem like much to you but it could be the help that is needed.

Speak

Celebrate the child. Offer congratulations. Celebrate God in all of this. Ask questions, understand as much as you can what this means. Remind them of who God is in all this. He is our strength, wisdom, comfort, peace. Don’t jump to “God is good”. Yes, he is but at times it can be a struggle to understand that.

My comfort at that time was that God is sovereign. This was not a surprise to God. He didn’t forget that we were missionaries and living overseas. He knew and he planned all this.

I think of Jesus’ interactions with the parents of those with special needs. He talked to the parents, asked questions, and listened. Read the gospels and reflect on how Jesus interacted with parents.

What if you are the parent?

Do not be offended. Understand that at times people don’t know what to do so they say what they have heard. Don’t get caught up with the words, look at their heart. You might just need to ignore and move on. You don’t have to be the one to educate everyone on what to say.

 

Now almost 16 years later as I think about that comment. I am thankful for my daughter. Looking back through the years I have learned so many lessons while raising a special needs child. I know I am not a special parent but I have God who loves me and has enabled me for this task.

Sixteen years ago I might have said those same words spoken because I didn’t know what else to say. Through those experiences, I have learned and God has taught me so much.

I am thankful for the surgeon who after all the complications were still willing to perform open-heart surgery. I remember sitting there while the surgeon was performing open-heart surgery on my daughter God was gently working in my own heart. Thankfully God is gentle and patient, he has continued to work in my own heart through the years. He has shown me who he is. God can be trusted.

 

Look for the book to be published later this year. Telling the adventure of following God in giving birth and raising a special needs daughter overseas.

Related posts:

Who are Special Needs Parents

Fourteen Years of Special Needs Parenting