I quit going to church because of my special needs kids, but probably not for the reasons you think. It’s not because they couldn’t sit through a service or because their behaviors were outrageous or because it’s too hard to get out the door.
In 2018 I wrote about how hard church has been for our family for the last couple of years. Here is an excerpt:
“Church is hard because our family is struggling through an immensely difficult time right now and I can’t bring myself to go, sit through the service, say hello, smile at people. It feels too fake. But at the same time, I can hardly spill my dirty laundry, my anguish, my struggles, to some poor church member who shakes my hand and says, “how are you?”
I want to answer, “Terrible, thanks for asking” but we all know that is unacceptable. Especially at church.”
When I wrote that above many people chimed in with words of encouragement saying I should just be honest. The last year or so I have tried that method. I quit makes excuses like he’s tired, she’s sick, etc. I have been more open and honest on this blog. I posted in our church Facebook group asking for prayer when our son was hospitalized for mental health issues.
The Truth About Honesty
Well, I’ve found the hard truth about all that honesty. Sometimes it brings encouragement and other times it brings more separation. When I’m honest, I find out that people are afraid of my son. That makes them uncomfortable being in our home or having their children in our home. It means invitations are even fewer and farther between.
People don’t want to be around my daughter because she is a bad influence on their kids. Sometimes she’s a mean girl. She has been rejected big time by the girls in our church. And let me make this clear, I don’t blame the other girls– there is no way they can understand the issues we are dealing with. There is a very good chance that she instigated the problems. But here’s the thing, she feels that rejection. She knows other people don’t think she’s good enough or “Christian” enough. How can I continue to drag her to a church and talk about God loving her, when she knows she isn’t accepted there?
It’s Not Our Church, It’s THE Church
My mom has suggested we try going to her church. But here’s the thing, it isn’t the specific people at our church. If that were the issue we’d be out. We aren’t in need of a church that has “sensory-friendly” services or a ministry for kids with special needs. My children need love without strings attached. They need to be loved and accepted with no expectation of anything in return. They need to know that they are good enough because God made them, and they are His precious children.
We Aren’t a Nice Christian Family
We aren’t a nice Christian family and I have found out the hard way that being honest often means more ostracization and fewer social outlets for my kids.
Am I embarrassed by my children’s behavior? Sometimes, but that’s not the reason I quit going to church. I quit going because I have found out that Christians (in general) are far less forgiving of my children’s behavior. They believe love, structure, some good old-fashioned discipline (and Jesus, of course) should be enough to wipe away the trauma and the devastating effects of prenatal exposure. They want to protect their children from the influence of my children.
Churches Need to be Accepting
My children don’t find church a safe haven. They find it difficult and they know they are not accepted. This last year my son has been attending youth group with his brothers at a nearby church (not the one we attend). He is comfortable there and he enjoys it. I am so very glad for him to have this connection.
Our other children? They are dealing with their own trauma from their siblings’ behaviors and from understanding, intuitively that we are different. And I worry about the message we are sending to them, by not attending church regularly.
Church Should Be a Refuge for the Hurting
I wish church could be a refuge for us, but it isn’t. Don’t get me wrong, there are lovely people there and our church has helped out more than once in a time of need. It’s not that. It’s the Christians who look at us and only see unruly children…or punks…or a threat…people who don’t understand the trauma we are dealing with because they’ve never asked.
So, yeah, I quit going to church because of my kids with special needs. I don’t like not going. Someday, I imagine, I will start going again, but that day, I fear, is a long way off.
And I’ll be going without my children.
Tips on Reaching Out
- Reach out to difficult people. Over and over again.
- Invisible Disabilities are just that- invisible. Just because someone “looks fine” does not mean they are fine.
- Remember, you only see my children on their best days. If they aren’t having a great day, we don’t leave the house. Because we can’t.
- Reserve judgment. It is not helpful or encouraging to say, “I saw so and so and they looked fine”. Believe me, when I tell you health care providers do not just toss around diagnoses like Fetal Alcohol Spectrum Disorder, Bipolar Disorder, and Disruptive Mood Dysregulation Disorder and Autism for fun. Our children have been evaluated by many, many experts.
- Check out my post about how to help foster and adoptive families.
Very brave post, Renee. My daughter-in-law is a social worker who manages adult clients with FAS. In an attempt to explain it she recently posted this:
“An individual with Fetal Alcohol’s brain is like that light bulb in your house with a short in it. Sometimes it works perfectly and shines all day – other days it flickers on and off. Then, they’re the days that no matter what you do that light is not coming on.
The challenge is to figure out which one, on which day, so we can accomodate appropriately.”
I thought this was it was quite an apt analogy.
My youngest granddaughter, age 2 and a half, was diagnosed with high functioning autism a few months ago. My daughter has found people often react unkindly when her little one has an inexplicable meltdown in public. Most just cast her judgemental looks. Others actually say something disparaging her parenting. My daughter mostly tries to limit the social situations and public places which cause Emma anxiety, but sometimes they are unavoidable.
I think many people don’t understand that it’s not a condition ‘fixed’ by good discipline, nutrition (recently a lady told my daughter that she must feed my granddaughter too much sugar!), better routine, less TV, more sleep, time outs etc.
I am sorry for the lack of Christian love and acceptance you and your family have experienced. We need to do better.
Oh wow…I think it’s really sad, that the one place where you would expect everyone to be accepted the way he or she is, just isn’t that accepting at all…
I wouldn’t want to go anywhere knowing my children aren’t accepted but only jugded for their “misbehaving”…
And I think it’s terrible that your kids are missing out on many things because of their health issues…
I might have questions if I was to send my kids to your house for a playdate – but you’re the one who knows your kids best – and I would trust you, if you were to tell me that you can handle it – because I’m pretty sure you wouldn’t invite someone over if things very too difficult at the moment…
I hope your children find places and friends who love them just the way they are – even if there are difficult times, inappropriate behaviour and other issues – people really need to understand, that they’re not doing it on purpose but they just can’t help it…
I sympathize. Christians can be very unchristian. There’s Christ, and then there’s Christians. Frederick Douglass remarked that the worst slave-owners were the religious Christians–the ones who found in the Bible any excuse they wanted to beat their slaves. I’m not religious myself, but my husband was, and he carried around a sunny, sympathetic even-tempered mood that calmed others and which he attributed to Jesus. Somewhere out there I hope there’s a church that has a few more friendly, less judgemental and scared people. I remember you writing about Rachel Held Evans, and I know you say your feelings about religion are different, but I still think she’s talking about some of the same things you are–I would think of her as having great moral honesty. Maybe some community connected to her could help you find a church that’s better for your family
I stopped going to church because the judgement is palpable. I have tried more than one church. Sitting in a pew squirming etc is not an ideal way to spend Sunday.
I have witnessed church members smacking my son. Their behaviour was not seen as unkind etc.
It is difficult to go now as I am my mother’s carer. But I miss going to church.
Smacking your son?! Wow! I am sorry to hear you are in the same situation as us. I just can’t force my daugther to go to church (of all places) only to be rejected….
Sonja- I want to make it perfectly clear that I would have no problem with you asking questions before sending kids over here. What I am trying to make people understand is that if I am honest about things, we are even more isolated. My *typical* kids are also dealing with this trauma, and they are now missing out on normal relationships and activities. The honesty has an effect on everyone in this house. The trauma and damage caused by prenatal drug and alcohol use don’t go away. My kids will grow up and leave home and what then? We have already seen the church reject them when they are kids living in our family…what about later on? When the stakes are higher? I don’t know the answer to this, but I would like Christians to be aware. Jesus was sent to save the lost and heal the sick…the church needs to follow the same path.
I’d be SO worried about their life after leaving home 🙁
I mean – we as moms worry about all of our kids – but then with those without any health issues we know we can actually teach them how to cope with things, how to make important decisions etc. – and when they grow older, we learn to trust them – and their judgement and we eventually know that they will follow their chosen path…
but how can we trust in decisions that are beyond our child’s rational behaviour – that are controlled bei FASD or any other health issue…knowing how much depends on others in that case 🙁
It’s terrible that people tend to avoid you because you’re honest!!! I’d rather know the truth and – if possible – help out in any way I can than being told “everything’s great” and witnessing a family struggling without understanding what’s wrong.
But then – for most it’s just easier to be told polite lies than to be confronted with the truth.
And you know…(because we all need to hear that from time to time – even if it comes from a complete stranger) – I think, you’re doing a great job – and everything’s going to be alright- someday, sometime!
Renee, I was raised Catholic, 12 years in Catholic schools, etc. I left the formal church decades ago because I realized that church-based religion is not true Christianity. It doesn’t have anything to do with the true message of the New Testament; it just gives people a way to puff out their chests and proclaim their “Christian” beliefs while they act in non-Christian ways. People need to ask themselves “What would Jesus do?” and I think their thoughts and actions would change dramatically.
Believe in your faith! People who have not walked your path have no idea of the heroic efforts you put forth everyday to raise and love your children!
I can identify with your experiences because of some of our family’s circumstances. I have been a vocational pastor for 19 years. We have been in my current ministry for 2 years. My wife and I have 7 children (4 biological, 3 adopted through the foster system) plus two foster kids. My wife has overseen our kids’ homeschooling for the duration (20 years and counting). Our two oldest have aged out of the house and are in college, but that still leaves 7 at home ranging from 16 down to 1. Two of our adopted kids have fetal alcohol syndrome related issues that affect behavior and such. So there’s a lot to empathize with in the article. I get it about the invitations and socializing. We have kids who get invited places, and kids that don’t, or don’t more than once. We don’t get asked over very much, partly because of things like this, and partly because it’s intimidating just because of numbers. Nine people is a lot. I get it.
With that said, I think the reality is when we have difficulties, we can’t just put it on everyone else in a church or society to be accepting of _our_ struggles. We have to realize part of _their_ struggle might be having to figure out how to accommodate and serve us with our quirks, too. We can’t just expect others to be instantly patient with us, as nice as that would be. It takes time for those of us who are caregivers of special needs kids to grow and learn how to adjust and serve the demands of our children, and we have them day in and day out. How much more people who see them once of twice a week?
If we want others to accept _our_ imperfections, we must also accept _theirs_. As much as we want Christians to be accepting, we cannot be surprised when we find them to be less than ideal in their responses to us. Does your church have room to improve? What church _doesn’t?_ But churches won’t learn how to accommodate if some of the kind of people–like _us_– who need to be served don’t stick it out. I undertsand it might seem easy for me to say, because I’m a pastor so my family _has_ to stay. Okay, I can accept that. 🙂 That’s what commitment looks like though. It might seem easier some days if we could give our kids back, but that’s not what we committed to when we gave them our names and made them part of our family. It might seem easier to refrain from church too, but the same principles apply. Whether or not they are serving you, they need you to serve _them._
Sister, I weep for you as I’m finishing this. I know. I KNOW. But we who are strong ought to bear the infirmities of the weak, and not to please ourselves. Stick with it… not for you. Not for them, even. Do it because Jesus will be magnified, and His strength will be perfect in your weaknesses.
I’ve prayed for you.
I appreciate your comments and agree. I am trying to make it clear that I am not blaming OUR church, THE church, or Christians. I am just sharing my point of view and what it looks like to be on this side of it…it our family, right now. I have not given up on Christians, or God, or my faith. I am just trying to share why church, right now, feels impossible for our family. I will go back someday, but it may take some time.
Totally get this and very similar feelings. They say when you live with special needs kids like ours – you get ptsd. I’m working with a trauma center that automatically takes in siblings – because it’s that hard.
Totally get it.
I live in a community now where 20% of the kids have an iep at school and that’s the first time I have been accepted. The moms get when I can’t speak and just drag my kid home. They understand bipolar isn’t a phase. Or autism isn’t a misdiagnose. Or that my kids are not “naughty” in a neuro typical sense.
So many of us, I feel, went on this journey with great intentions and instead got beat up. Of course I love my kids, but let’s call it: the sacrifice to help someone came at a great cost.
Jesus gave his life to help someone – you’d think the church would understand how to give it back. They don’t have to say yes to this mess, but they could support it.
I had one friend ask how she could support me, and I said: please stay my friend and listen to me. I just need empathy.
I have two children with FASD and mental illness… You are living my life, and you put the experience into words very well. My exposed kids are in their 20’s now, both still live at home, and the feeling of disconnect from the rest of the world is very real, and continues. Good thoughts and prayers for you and your family.
Hi Renee. Just letting you know I have read all of your posts about this subject a number of times. I have not commented on here but that does not mean I am not concerned. I am very concerned but would prefer to talk with you in person rather than to post on a public forum like this. I know you are busy but when you have a chance could you let us know and drop by for a little while? Nothing to worry about by the way. You will hear no criticism here but would just like to talk with you. I probably don’t have any solutions but I am a good listener I think and I understand that even that can help. Hoping you can drop by sometime.
Hm. It’s a pity that this is the way church is framed in the U.S. and Christian behavior lacks solidarity.
Living in Europe and looking on from abroad i see a very different tradition of church in the US. Here, solidarity, inclusion and acceptance come first. And I would personally add that judging children would be considered trespassing- but I might be too optimistic and lacking experience
Writing from another european point of view and a deeply catholic country, I don’t quite agree…
Living in a small village full of devoted catholics, judgement is omnipresent – especially when you’re different or have different opinions;
starting at pretty small things that I just wipe away – like one child telling my daughter that something terrible was going to happen to her because she doesn’t have a guardian angel necklace around her neck to avoiding, judging and leaving out people because they aren’t catholic enough, constantly talking behind their backs and so on…
I’m sure there are lovely, more open minded communities somewhere and I was raised in a protestantal environment where people usually are a lot more welcoming and less judgmental – but generally speaking, especially in my state (not so much in other states in my country) people are pretty narrowminded and judgemental – I mean, we’re talking about the catholic church that still believes homosexuality is an illness and should be cured…
My husband grew up in such a judgy Catholic world (village in Bavaria) that the mere thought of marriage between a Catholic and a Protestant was enough to make his (very Catholic) mother say, “I need two heart pills!” and freak out because he had–at the time, and long before me–a Protestant girlfriend. How did all that go down? “She died, and he married you!” said one of his best friends. And who am I? The polar opposite. A New York atheist who would be all too happy to feel religious at the moment, since my dear husband just died, but religion isn’t in my bones. He wanted the kids to be Catholic and I said, “Sure!” because I saw how important that was to him. And now what? None of them are. Two got confirmed before my husband died, but now they tell me that was just because they loved him. Religion, I believe, should be love, whatever the denomination. Loving something, believing in good things–that counts as religion in my book. And I do read the bible for the poetry and the good advice; I just don’t get the supreme being thing.
Thank you for sharing this. While I am not in the same boat as you, we have many similarities. I am discouraged by the lack of support from the Christian community. There are a few that have not abandoned me, but those are few, and far between. It hurts deeply.