How do you initiate a conversation with a parent about their child's special needs?

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April is Autism Awareness month. As a Family Pastor and father of a child with special needs, I want to address a question I often hear from children's ministry volunteers: "How do you start a conversation with parents about the possibility of their child having special needs?" This can be one of the most awkward situations in children's ministry. Often children's ministry volunteers have a background in education. They may have strong suspicions about a child's needs but the parent seems completely unaware. If you've found yourself in this situation, here are a few brief encouragements:

  • Evaluate your children's ministry registration process. At Sojourn, our intake form asks every family if they have any "allergies, medical issues, or special needs of which we need to be aware." We phrase the question in that open ended way to allow parents to opportunity to share any of their child's struggles. Often this gives us a window to offer help to the family. If a parent is open about special needs, we have a second more extensive form that collects more information. . You can download that form here. At this point, we ask if the child has an IEP (individual education plan) from their school and if they'd be willing to share a copy with our ministry.

  • Never diagnose a child. My middle daughter, Lucy, was diagnosed with severe Autism when she was age 3, but it would still be a bit jarring if someone began a conversation with me by saying, "I think your child has a developmental delay," or "I think your child has Autism."

  • Instead, report what you've noticed and ask questions. It's better to say, "I noticed that Lucy has trouble in settings where there is a lot of sensory input--like in the large group worship gathering," or "I noticed Johnny has more trouble sitting still through the story than other boys his age. Is that something you've noticed as well?" You'll be surprised how often a parent will report their own observations or even a diagnosis that they've never talked about with the church before. This is an entry point where you can begin to offer help.

  • Be sure to offer help and not advice. Never give advice--"Have you tried a gluten free diet?" or "Has he been on such and such medication?" Rather, offer practical ways you can help the child engage in the Sunday experience. "Do you think we could try having Lucy wear these sound deadening head phones during the worship gathering?" "Do you think having a fidget would help Johnny sit still and pay attention longer during the story?" When discussing any difficulties, be open to suggestions from the parents.

  • When a parent is genuinely asking for advice about a diagnosis for their child, I point them to the professionals in their lives (pediatricians and teachers) who are more equipped than me to make those calls. I just encourage the parents that there is no reason to have shame or fear when talking to their doctor or their child's educator. Asking for help is often the best path to receiving it.

Finally, there is one really important thing to see when working with kids who have special needs: God has given those who suffer as gifts to the church. As Colossians 1:24 says, "Now I rejoice in what I am suffering for you, and I fill up in my flesh what is still lacking in regard to Christ's afflictions, for the sake of his body, which is the church." When a member of our church body is suffering and we suffer with them (and for them) we have the opportunity to grow in our experience of what it meant for Christ to suffer for us. Having that mindset can make an amazing difference.

5 Christian books for parents of a child with Autism

If you're a pastor and you know parents who have recently received an Autism diagnosis for their child, the last thing you should do is hand them a book. But for those who have settled into the new reality of parenting a child with unique needs and are asking for resources, these are the books I recommend. Moreover, I recommend reading them in this order.

1. Finding Your Child's Way on the Autism Spectrum: Discovering Unique Strategies, Mastering Behavior Challenges by Dr. Laura Hendrickson, (Moody Press, 2009). The late Dr. Hendrickson, who was trained both as a psychologist and a biblical counselor, left us with this hopeful and practical book. Two appendices, one which provides counsel for those in the diagnosis process and a second for parents selecting a behavioral treatment program, are helpful for parents soon after diagnosis. Her glossary of terms is a practical support for those who are drowning in all of the new jargon. Chapters on social skills, rituals, relationships, managing emotions, and discipline are biblical, hopeful, and they provide a careful nuance. Hendrickson was confident that parenting a child with unique needs is very different from parenting typical children, and she encouraged parents to look for God's purpose in their child's unique way.

2. The Life We Never Expected: Hopeful Reflections on the Challenges of Parenting Children with Special Needs by Andrew and Rachel Wilson, (Crossway, 2016). When a child is first diagnosed with special needs, parents are in survival mode. But the moment there is margin, all of the emotions begin to flood. Andrew and Rachel Wilson are vulnerable about their deep pain and the deep joy they've discovered in unexpected places. With raw honesty, they share about the challenges they face on a daily basis--all the while teaching what it means to weep, worship, wait, and hope in the Lord. This book will challenge you and help special needs parent grieve the new life God has given them.

3. A Praying Life: Connecting with God in a Distracting World by Paul E. Miller, (NavPress, 2009). Paul Miller defines 'the desert' as the space between our hopes and reality. Few people know quite how this place feels like a special needs parent does. Miller has a daughter, Kim, who struggles with Autism, along with two typically developing children. He knows the battle of living a godward life when so many prayers are deferred.

A Praying Life has encouraged me to believe in the midst of dry seasons, and I've found Miller's prayer card method to be just the handhold I needed to learn to cry out to God with more consistency. In one of my favorite passages, Miller shares how hopes deferred made him more dependent on God: 

Kim brought Jesus into our home. Jill and I could no longer do life on our own. We needed Jesus to get from one end of the day to the other.

4. Leading a Special Needs Ministry: A Practical Guide to Including Children and Loving Families by Amy Fenton Lee, (B&H Books, 2016).  Not every parent of a child with special needs is called to start a special needs ministry. Many would find this to be an unnecessary burden. But God does comfort us in our afflictions so we can in turn comfort others with the same comfort we've received from him (2 Cor. 1:3-5). For those who will step into ministry to other special needs kids and families, Amy Fenton Lee gives a step-by-step guide for accommodating and including children and loving families. Specific sections of this book dedicated to laws and trends as well as behavior and participant safety make this an excellent start-up guide.

5. A Loving Life: In a World of Broken Relationships by Paul E. Miller, (Crossway, 2014). In this exposition of the Book of Ruth, Miller grounds a life of love in the sacrificial, covenant love of God. He also reminds us that the Christian view of history is a J-curve. It's death followed by resurrection. For suffering caregivers like special needs parents, this is an important theological truth. Because Christ lives, we can move from bitter despair to a place of loving hope. Because he first loved us, we can continue to serve and be helpful to others. We can continue to care even when we receive nothing in return.

What other books would you include? Are there any that I've left off the list? 

Parenting and a smiling pile of poo

Photo by ivan101/iStock / Getty Images

“Not again, Elias!”

I hate poop. I especially hate it if I have to clean it off my son, his bed, the carpet, the wall, and my own clothes. This marked the fourth time within six months. I was so angry with my four-year-old by that my body visibly trembled with rage. Somehow, beyond all reasoning, he had relieved himself of his pajamas, diaper, and the contents of his bowels. No poop could be found in the diaper, but it was everywhere else. He looked up smiling. “Not again….” I whimpered as my exasperation gave way to sadness encroaching on despair. I bathed him, and he screamed about being cleaned. I prayed silently, “Will he ever get over this issue? And will I ever stop wanting to throttle him for doing this?”

We’ve all gotten angry with someone else’s behavior.

We have all gotten angry about someone else’s behavior. My son is autistic. At this point in his development, he seems perfectly content to resist potty training. It seems that he'd just prefer to remain in his foulness. I tell myself not to get frustrated in those “Not again” moments. I pray God will give me greater strength and patience. Certainly the Sovereign Lord could throw me a bone and help me out! I’m tired of saying “not again” and having to apologize to my special needs son for getting so angry with him. I’m tired of humbling myself and having to repent of my sin over and over again. In those moments, God reminds me that I'm just like Elias. I'm content to stay in my poop. 

God uses suffering to bless me again... Yes, again and again!

With a gentle nudge, the Spirit reminds me that it is His kindness that leads me to repent (Romans 2:4-5). I do not need to indulge my hard heart. I sigh as I hold my washed son, and he hugs my neck. God uses suffering to bless me once again. He reminds me to turn away from my false hope in a higher functioning child or easier circumstances. He reminds me to rest in His strength and return to the forgiveness he offers through the cross of Christ. I don’t need more personal strength. I need to die to myself so that I may live again in the resurrection life Christ gives to me (Galatians 2:20).  In my weakness and rottenness, I must return to Him. Yes, again and again!

Heath Rickmond

Dr. Heath S. Rickmond is husband to Jackie and dad to Elias and Ansley. He holds his Ph.D. in systematic theology from The Southern Baptist Theological Seminary. He teaches Bible and technology at Christian Academy Southwest in Louisville, KY. Heath says, "I'm a justified beggar showing other beggars where to find bread. I'm a nerdy hero who wishes he was super."

For friends and relatives of those with special needs children

Andrew and Rachel Wilson have written a book that I think will be a Christian classic for parents of special needs children. Through a repeated cycle of obedience and lamentation (weeping, worshiping, waiting, witnessing, and breathing), The Life We Never Expected teaches us to grieve and to laugh and to trust. 

I've pointed to this first chapter, "When Life Gives You Oranges," before, but one of the chapters I found to be most profound when reading the (British version of the) book this past Spring was Rachel's "A Note to Friends and Relatives." She writes:

A fantastic extended family has helped practically in a myriad of ways. Our group of friends and church network have given countless kind words and prayed faithfully. Our experience of interacting with friends and relatives through our whole journey has been superb.

At the same time, though, we know that this is not always true for everyone. Some reactions, however well intentioned, can be extremely unhelpful. So since it is hard to know what to say when people are going through a hard time, and since words have such power to build up or tear down, we though it might be good to give a few suggestions on how to respond when friends or relatives of your are hit by disabilities, particularly in the case of their children. In saying this, please know that we have gotten this wrong as much as the next person! 

Here is Rachel's advice in brief:

First, sympathy alone is more helpful than trying to cheer. So many find it hard to stop at "That is so hard, and I am so sorry." But looking for an explanation or a silver lining too quickly can do more harm than good. This is especially important for parents of autistic kids. She writes, "The reality is that most children with disabilities won't be among the savant few and won't have their whole worlds turned upside down by horse whispering or crochet or the latest therapy fad, and there is, consequently, a very real reason to grieve."

Second, practical acts of service are enormously powerful. Often Christians want to pray for healing but no one offers to provide one-on-one care for a child with needs while the parents attend a church gathering. While reading this section, I gave thanks for the special needs ministry at our local congregation and for the many women who have spent time in our home each week taking care of Lucy. But I was reminded about the weeks during our diagnosis process when I could have better cared for Megan simply by asking others in our church to prepare a meal. I was also reminded that the population of special needs children in churches is 73% lower than the population in public schools. Practical service of grieving caretakers is a great need.

Finally, it should be acknowledged that those around the special needs family suffer as well. Grandparents, siblings, and close friends also grieve a difficult diagnosis. Rachel writes, "We have really benefited from the speed with which those around us have come to a place of acceptance and the fact that we have not had to justify decisions about schooling, mealtimes... More than almost anything else, we have really appreciated the leeway we have been given by friends and colleagues to miss birthday celebrations, duck out of evening events, arrive at things late, leave things early, or retreat with children into bedrooms (during parties) and side chapels (during weddings)." At the same time, those closest to a special needs family have had their dreams rearranged as well. Just as those around us have a role to play in helping us, we also have an important role in helping them too. 

How do you receive Rachel's counsel? If her words are an encouragement to you, pick up the book and leave an encouraging comment below.