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? I plan on writing a blog covering this subject soon. But when inquiring about what millennials need from the church, a friend who has a special needs family hit on a particular characteristic that I whole-heartedly agree with- a church that is family. 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 and 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 3 days due to a crisis with your special needs child. 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 special needs family in your church wants you to know:
Being a Special Needs Family Can Be Isolating-
When you are the only special needs family 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 don’t want to ask for the help we so desperately need. But being a burden isn’t the only thing we’re worried about. We are genuinely afraid that we won’t get the help we ask for and are saving ourselves from the disappointment. So, we isolate ourselves and succumb to carrying the load alone.
We Need Extra Love-
Special needs families 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 special needs individuals 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 special needs families think that 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. While as a special-needs mom I totally get this mindset, 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 special needs family without a real conversation. The church can’t read your mind. I think that 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 that your child has special needs if he/she doesn’t and offend you further. So definitely approach church leadership and let them know that you have a special-needs family and need a little extra love. That opens the door for leadership to safely initiate a conversation about how they can better love your family.
We Are Busy-
On the health side we 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 have IEP meetings, evaluations, plus an hour and a half of homework every day that a typical child would complete in 15-20 minutes. 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. To relax. Something we rarely have the chance to do. Maybe we can spend that time getting a few extra zzz’s.
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. Making lifelong friendships is especially important to special needs families. 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- out loud- right then and there. Sometimes we need a reminder to take care of ourselves too. Other times we 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.
We Desperately Need Time to Focus on our Marriage-
The stress of being a special-needs parent is insurmountable. Rarely do we have the opportunity to truly invest in our marriage. How can we when nobody from the church- the place where we expect to make our strongest friendships- is willing to invest their time into our family? Many special needs parents don’t even remember the last time they went on an actual, legitimate date with their spouse. For us, it’s been about 7 months. Would that be acceptable for your marriage? Now think of a marriage that has the stressors of a special needs child.
We Need People We Can Trust Our Children With-
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 special needs families have family nearby. But there are many of us who 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 special needs child) live 380 miles away. I genuinely hope that an emergency like that never comes up, because we’d have no one around who could competently take care of our children.
Being a Special Needs Family is Expensive-
With the cost of therapies, specialist appointments, medication, medical equipment and even tuition for special needs schools, being a special needs family can quickly 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, many of these families are one-income families due to the complications of their child’s situation- one parent always needs to be available. But many special needs parents still give countless hours of their time to the church. If you have a special needs parent who volunteers and regularly invests their time in the church, help them out- it’s just the right thing to do. Maybe you have tasks that they can do from home. Maybe there is something they can do that offers flexible hours or a job where they can bring their child. Most families don’t want a handout- but when they do something that they could easily get paid for elsewhere, at least offer.
You Are Missing Out-
Yes, being a special needs family has 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 that our family can be to you. All of the points mentioned above are things that we are willing to do for you. Because we feel isolated, we want to make sure others don’t. We know we need extra love and 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. Because of all we’ve been through, our faith in God’s goodness is fortified, and because we aren’t put off by the fact that he uses people to show his love (not just by faith and prayer, but by actual works- faith without works is dead), we are willing vessels. Since we hardly have time to invest in our own marriage, we are willing to help and love on your kids when you need that time for your marriage. We are the best people to go to in emergencies, because we know how to stay calm and are willing to 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, whether that means monetarily or with our time, talents, and abilities. We love fiercely and know how to actually be the church- we look for those opportunities- we just ask that the church do the same for us.