My 12-year-old lolls in her wheelchair, puffy hands, unfocused eyes, making loud babbling sounds of excitement. Her brother, aged 10, is flapping his hands happily, dribbling in earnest, and jumping up and down. With difficulty I guide the cumbersome wheelchair into the church, clutching tightly to my son’s hand.

I wonder what sort of welcome I would have received at your church?

Be brave

I love it when people talk to and welcome my children personally, treating them with respect and friendship. At one church, someone kindly offered to give me a break by taking my son for a walk; someone else fed him lunch. Neither had met me before and I was blown away by their kindness. These people took a risk – they didn’t know what my children could understand, how they would respond, or how I would react. Love is braver than that.

Be genuine

People who only see my children as broken, as healing or prayer projects, will soon taper off. Those who have a genuine concern and love for my children will talk with them most weeks. These are the ones I am more likely to be honest with about how things are going, who I am more likely to accept help from, and who will be blessed by getting to know and appreciate my children – seeing way beyond the wheelchair and the dribble.

Be open

We need to open up the small box we have put “disability” into. “Disability” actually covers a huge range of people from mildly intellectually or physically to severely multipli-disabled. No two disabled people are exactly the same; no two families are the same either. As we get to know these children and their families better, instead of having a one-size-fits-all approach, we can provide a tailor-made welcome just for them.

Be informed

The church community will probably need some input and guidance from the parent(s). What does the child enjoy? How can we involve him/her more? The parents or child may value the opportunity to speak publicly at church, or put together an information pack explaining their condition.

Be a role model

“Do as I say, not as I do” just doesn’t work: Parents who want their children to accept and befriend children with disabilities need to lead the way. They need to overcome any fears, feelings of uncertainty or apathy, and bowl up to that child and family and make them feel welcome. Children who struggle to accept or even acknowledge my children often have parents with similar attitudes. The “trickle-down effect” can be a reality!

Be sacrificial

“How can we help you?” is easy to ask, but difficult to follow through on. I have tended to have low expectations of church involvement. My rationale? I needed big, sacrificial, ongoing help: Are the people asking the question really prepared to help at that level?

Are there people in your church who would be committed long term to providing one-on-one help with a disabled child? When James was almost 2, a woman at our church offered to help in a very specific way: To take James out swimming every week for a couple of hours to give me a break. She did this for two years!

Be resourceful

Not every church will have the more significant or specialised resources that some of these families may desperately need. Not just anyone can look after an autistic child with high behavioural issues; not just anyone can counsel a couple struggling with grief and depression; not just any church can donate a van or provide a holiday. But by being resourceful we may still be able to make it happen. When we needed a van with a hoist we didn’t have the finances or the energy. Someone else stepped in, did the phoning around and door knocking to raise the funds, then found a van suitable for us.

Be a friend

Having disabled children can be a lonely and tiring path, separating us out from “normal” families. Don’t be freaked out or worried about being PC – befriend, accept and involve families with disabled children.

Be humble

Jesus is the ultimate example of servanthood and humility. Seldom with the rich or the privileged, he spent much of his time with the oppressed and disadvantaged. He longs for us to align our values with his: To love sacrificially, to give when we may not get back.

“Whoever welcomes this little child in my name welcomes me; and whoever welcomes me welcomes the one who sent me. For he who is least among you all – he is the greatest” (Luke 9:48).

“When you give a banquet, invite the poor, the crippled, the lame, the blind, and you will be blessed” (Luke 14:13).

– Joanne, pictured with Janelle and James, has three children with her husband, Charles. Janelle had a brain tumour rendering her severely intellectually and physically disabled. She died six years ago, aged 12. Their 17-year-old son James is mobile but has the cognitive ability of a 9-month-old. Jessica, who has just turned 5, is doing well.

Charles, Principal of Carey Baptist College, shares an excerpt of their recently released book, "Hurting Hope: What parents feel when their children suffer," in a column this month.

A review of the book appears this month, and more of their story was published in the July NZ Baptist.