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What Families of Kids With Disabilities at Your Church Want You to Know

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Recently I put out a question to all my church-going millennial friends asking what they look for in a church. What draws them in? What makes them stay? And what makes them leave? A friend who has a child with a disability hit on a particular characteristic I whole-heartedly agree with — a church that is family.

A supportive church is not just people you see once a week, but people who love you and your kids well and genuinely care about your well-being. People you invite over for family dinners, holidays, or just for no reason other than their company. Church members who will offer to spend time with your children so you and your spouse can have some actual alone time. People who will love your kids as if they are family. Friends who will drop what they are doing and force you to take care of yourself, because you haven’t had a shower in three days due to your child having a health crisis.  People who won’t judge you when they come over and your house is a mess because you just can’t today. People who you can just do life with.

So without further ado, here are some things the family of a child with a disability in your church wants you to know:

1. Parenting a child with a disability can be isolating.

When you are the only family with a child who has a disability in a church full of “normal” people, it is easy to feel out of place. Rather than reaching out and asking for the support we need, we often find ourselves closing people out, because we don’t want to feel like a burden. We may not want to ask for the help we so desperately need. Being a burden usually isn’t the only thing we’re worried about — we are genuinely afraid we won’t get the help we ask for and are saving ourselves from disappointment. So, we isolate ourselves and struggle alone.

2. We need extra love.

Families like ours can absolutely thrive when surrounded by people who are willing to go the extra mile to love their neighbor.  But we’ve seen so much standoffishness and even discrimination against people with disabilities in and out of the church that we would rather be overwhelmed trying to do everything on our own than be rejected for simply needing the church to give us a little extra love. Many families think if the church were doing what it was meant to do in the first place, they wouldn’t have to ask.  There wouldn’t be such a deficit.

As a mom, I totally get this mindset, but as a leader in my own church, I would like to counter that every situation is different, and the church won’t know how to support your family without a real conversation.  The church can’t read your mind. Yes, a leader in the church should generally initiate the conversation, but it is hard when the family is isolating itself to begin with.  We don’t want to assume your child has a disability if he/she doesn’t and offend you further.  So definitely approach church leadership, talk to them about your family’s circumstances and let them know you need a little extra love.  That opens the door for leadership to safely initiate a conversation about how they can better love your family.

3. We are busy.

On the health side, we often have doctor’s appointments, specialty appointments, therapies, long phone calls with the insurance company and much more on our plates. On the school side, we often have IEP meetings, evaluations and extra homework. And let’s not forget the normal parenting duties we have like keeping up with the house, laundry and preparing meals, all while making sure our kids are safe. We’re lucky if we get a full night’s rest or even a shower every other day.

This is where the church can step in. Have a rotation of people who can bring us a meal once or twice a week, maybe even just a couple of times a month.  We can use the time we would have used on dinner to take a shower, or even just sit down and watch a movie with our family. We can relax, something we rarely have the chance to do.  Maybe we can spend that time getting a few extra zzz’s.

4. We need genuine friendships.

I’ve always lived by the motto: The best way I can take care of my family is by taking care of myself.  This covers the physical, emotional, mental and spiritual. Families like mine are often seeking lifelong friendships.  Sometimes we just need to vent and let it all out. We regularly need encouragement and to have someone who knows what we go through to pray for us right then and there. Sometimes we need a reminder to take care of ourselves too. Other times we may need a friend who can see through the façade and will gently and gracefully help us — not just pray, actually help.  Friendships like these are more valuable to us than words can express.

5. We need time to focus on our marriage.

Between medical appointments, therapies and the other challenges of raising a child with a disability, we rarely have the opportunity to truly invest in our marriage. How can we if nobody from the church — the place where we expect to make our strongest friendships — is willing to invest their time into our family? Many parents of children with disabilities don’t even remember the last time they went on an actual date with their spouse. For us, it’s been about seven months.  Would that be acceptable for your marriage?  Now think of a couple that is coping with the extra challenges we are facing.

6. We need people we can trust with our children.

Speaking of alone time, what would happen if there was an emergency with my husband or myself and we needed someone to watch our children? Yes, some families have relatives nearby, but many of us do not. In our case, we are a military family — our closest family is 900 miles away. And the people we can entrust our children to who are not family (but have invested time in our lives and know how to take care of our child with a disability) live 380 miles away. I genuinely hope an emergency like that never comes up, because we’d have no one around who could competently take care of our children.

7. Having a child with a disability can be expensive.

Even with insurance, out-of-pocket costs for therapies, specialist appointments, medication, medical equipment and tuition for private schools that can meet a child’s needs can drain the bank account. In fact, many families build up credit card debt or simply go without medical necessities and/or therapies because they simply can’t afford it. On top of that, they may be one-income families due to the complications of their child’s situation — one parent always needs to be available.

Despite these challenges, many parents of children with disabilities still give countless hours of their time to the church.  If you have a parent who volunteers and regularly invests their time in the church, help them out — it’s the right thing to do. Maybe you have tasks they can do from home, a project with flexible hours or a job where they can bring their child.  Most families don’t want a handout — but when they do something they could easily get paid for elsewhere, at least offer.

8. Our family can be a blessing to your church.

Yes, parenting a child with a disability can have a myriad of complications. It’s easy to not want to be involved with “that” family. But by standing aside, you are missing out on the blessing our family can be to you. Because we feel isolated, we want to make sure others don’t. We need extra love, but also have extra love to give. We understand what it is to be overwhelmingly busy, so when we see you dealing with that, we know how to step in and help. Because we need those genuine friendships, we are the most loyal friends you could have. Our faith in God’s goodness is often fortified because of what we’ve been through. And because we have seen how God uses people to show his love through faith and prayer and actual works (faith without works is dead), we are willing vessels.

Since we hardly have time to invest in our own marriage, we may be more willing to help and love on your kids when you need that time for your marriage.  We can be the best people to go to in emergencies because we know how to stay calm and will step in immediately — whether that means taking care of your children, making meals, picking up your kids from school. Whatever it is, we are willing to help. And because we know how expensive things can get, we are willing to give when we can, whether that means monetarily or with our time, talents and abilities. We love fiercely and know how to actually be the church. We have a lot to give — we just ask that the church do the same for us.

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This story originally appeared on David Fighting FIRES.

Getty image by Standret.

Originally published: February 12, 2020
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