We have a lot of carebears around our house. I hate the things: they remind me of the cheerful, white-washed reality of the 80’s (for me, at least.) I lump them together with Pollyanna and the agressive cheerfulness of Cabbage Patch dolls. The Princess loves the new version of carebears. (Is she really mine? Seriously? Where is this all coming from?)
She takes them everywhere. They sleep with her, they ride in the car with her, and it’s impossible to get her coat off because she’s clutching them with a death grip.
This past Sunday we had an incident at church because they told her she couldn’t have her carebears in class. She started crying. I explained that she has anxiety. It didn’t matter: rules were rules, she couldn’t have them (despite having them last week) because kids would fight over them.
::sigh:: Can I just say that I’m tired of hearing this? It doesn’t matter where we go, what we do, or who it’s with. There is a certain way to do things, and if you ask to deviate you get the dreaded rules thrown at you. We hear “it’s not fair to the other kids” and “we can’t change it for one kid or we’ll have to change it for everyone” with sickening regularity.
The Princess has anxiety. It’s getting better. When she was the Destroyer’s age she refused to let me leave her in class. She broke down hysterically bawling if I tried to walk out the door. Every nursery volunteer knew me because I was always there with her. She finally started to outgrow it around age 3, and she’s doing much better now.
That is, unless the Sunday School lesson that talked about death. To 3-year-olds.
I’m not here to knock churchs. Our current church has been an awesome resource for the Engineer, and a great support for us as a family. It’s one of the only consistent social exposures our kids have because we’re so limited in extracurricular activities. So church is cool.
But, church in general has not been a good fit for our outlier, special needs children. In fact, we’re seriously considering quitting altogether, which goes against everything I believe in.
If I had a nickle for every volunteer who assured me that “he’ll be just fine,” when the Destroyer starts screaming, I could hire a babysitter. The leader in his current class, a former pre-school owner, actually lectured my husband about how the Destroyer needs to learn that other people can comfort him (they can’t.) Mr. Genius was not pleased.
It doesn’t seem to matter if I trot out the special needs explanation: rules are rules. I’m not even allowed in the Destroyer’s class unless I undergo a background check.
Because we’ve done this routine before, we know what works. Prove to the kid that class is a safe place with safe people (this takes months!) and we can eventually leave them in class without a meltdown. They might need a little help feeling safe, so they always have a backpack with their drink, their stuff, and a special tag on it with their picture, our information, and any special needs. And sometimes, they need a carebear.
Everyone knows better than us. We’re just the parents who cater to our special snowflakes. We acceed to their every whim, we spoil them with our presence. They need to grow up, mature a bit, get over it, and deal with it. We are the problem.
I reject that.
If my kid needs me around to feel safe, I’m ok with that. If my daughter needs a carebear to make it through class, that’s ok. It’s not a big deal to me until the rules say I can’t. Then I have a problem with the rules.
I believe you are doing right. I reject this argument about “the other kids”. It is entirely possible to educate “the other kids” and teach them that everyone doesn’t always get or need the same things. Fair means equal not identical.
Maybe you could explain that to the Pastor ?
Education is key, right? I agree, it’s good for kids to see that things don’t have to be exactly the same. We tried discussing it with the ministry leader but hit a dead end. We’re involving the special needs team (my oldest is in the special needs class, the younger two are too small to go) in hopes of working out a compromise. We’ll see!
I have a friend who is working on a book about making our faith accessible. She shared a story with me about when her (now grown) children were young and going to a charter school for special needs. The school was filled with families that USED TO go to church.
Church has been very hard with my kids, too, but for different reasons. In our church children attend the services. There is Sunday school but it happens before the service. And our services are long and can be overstimulating. People generally make allowances for children – they don’t expect adult behavior. But they do expect *typical* kid behavior. My kids are not typical. They don’t sit still. They aren’t easily occupied with color books. They’re emotional and stubborn and LOUD. And the oldest has anxiety. It would take tranquilizers to make my kids as docile as the other kids their age at out church. It was our biggest area of struggle for a couple of years running. We left church early in tears many times. I very nearly quit altogether.
We stuck it out and at 6 and 4, things are much better. Not great, but better. But there are many more that don’t stick it out. They cow to the social pressure and evil glares and never come back. Of all places, a church is where everyone should be welcome.
Great post – I’ve met quite a few special needs families who can’t attend church. In all honesty, most church models are tough for me to sit through, so why would I expect my no-patience, loud, over-stimulated children to handle it either? Such a tough call. Your friend’s book sound interesting!
They’re already making an impact just on social media. Like one made a visual schedule for the church service to help kids follow along and check off the boxes. One of the coauthors made it to help her autistic son but it has been so, so helpful to so many kids including my own. And it was so simple. All it took was a half hour of time, a little knowledge of the struggles of autistic children, and a couple of sheets of paper.
I hear this from professionals that I hire to give us guidance too.
And I want a nickel (or at least a refund) from every single one of them who has turned to me and said “This isn’t normal” after their plan backfires spectacularly.
But don’t even try their plan (which we’ve already ruled out…isn’t that why we’re here for professional advice?) and we’re “noncompliant”. There is no win with some people, because the majority of people saying “anxiety” mean something completely different than what we’re dealing with. I keep hoping for change, and talking about it against everyone’s better judgement, because talking means others who are dealing with it will feel less alone, and maybe a few people can get educated in the process.
Isn’t non-compliant the ultimate passive aggressive term? I hate that – even asking a question gets you that label sometimes. I agree, talking about it helps – both those who need it, and those who need to know it.
Please don’t give up on church. Our church found people that had a passion for children with special needs. They began a “buddy” ministry, where a buddy was assigned to accompany child and help them in whatever way parents and therapists said were helpful, so parents could enjoy their hour in se In one case it was just walking around in circles with a kid. OK. There was the kid who liked to stand in front of the digital timer on the light switch and count down the numbers. And it was ok. Sometimes they went into class for a lesson, sometimes they didn’t. It was ok. Out of our buddies ministry has grown an entire special needs ministry complete with teachers, therapists, a special sensory friendly room, and an annual special needs prom that is off-the-chains as good or better than any other prom in town. A full dinner is donated and prepared for all prom attendees and their families. At no cost. This week they are having a parents’ night out for last minute shoppers or just a date night for parents. And if a kid needs a CareBear, well, we don’t have rules against that. This all grew out of one person’s dream and desire to help special needs families enjoy church more. It can happen. Find people that are open to the dream and dream big! ❤
Thank you for your kind words – that’s such an amazing ministry! We’re currently attending a chuch with a great special needs ministry (and my oldest loves his class!) but my younger two can’t attend his class and are toughing it out in the neurotypical classes for now. It’s a hard thing, really, to ask a ministry to cater to our needs, and I understand that. I’m so glad that your church is reaching out in such a loving way!
This: “We hear “it’s not fair to the other kids” and “we can’t change it for one kid or we’ll have to change it for everyone” with sickening regularity.” ALL THE TIME! I getting sick of it, too.
Smart mouth me is going to reply “would you say that if my kid was in a wheelchair?” next time and get in trouble o.0
All I can say, is that I feel your pain. I stopped going to church when Squishy was a year old. It was just too hard. He would only stay in the nursery for 15 minutes, and we would spend the rest of the service in a cry room through a TV monitor. I tried so many different churches, even trying out different denominations. Finally giving up, because I could watch a TV service from my own couch without putting Squishy through the trauma. He is four now and we are just now starting to go back on Sundays. I have made it very clear my expectations to the volunteers. I am lucky that I finally found a church that is sensitive to my son’s needs. But I feel like I tried hundreds before it felt right. I do suggest going above the volunteers head. Is there a children’s pastor or even the head pastor? To me, church is not a place for “Rules” it is a place for compassion and loving hearts. And Why On Earth were they talking about death to a 3 year old class?!?
It’s just hard – and I’m tired of fighting. I’m glad you found a good church that Squishy likes! We spoke with the children’s ministry director and that went nowhere ::shrugs:: The whole death thing was part of a story, not a lesson in itself thankfully! The leader told me to skip Palm Sunday because they go over the whole crucifixion thing. Yikes! At 3! The Engineer absolutely loves his class so it’s complicated.