Tuesday, April 18, 2017

heaven on earth

(I don't know WHY for the love of Pete that the fonts are all wonky in this post. I think I cut and pasted something wrong. Please excuse the mess. Or pretend like it was all part of the dance.)

We haven't been to church in a year. Maybe longer. Shew. That feels really bad, and really good to tell you too. I still have a relationship with God, but I currently visit him outside of walls, until I can find a place that feels like home. 

I find him easily in the winding electric green grape vines just starting to grow and stretch across our house. I find him after a 
long walk, when my thinker finally stops thinking. I find him with each rise and fall of my boys chest as they sleep.

This post is not so someone will suggest that I try their church. I just want you to listen to me with your feet tucked under your legs, with your phone away while you look deep into my eyes. I just want someone to care that I care about these things. And even better if you care about them too.

I'm just a few years into this autism journey, and today I am exhausted. Not because of the autism part, but because of how hard it is to feel like you are sometimes fighting daily...at school, at church and in the world for basic things others seem to get automatically.

I am so so tired. And today I want to give up. (Hopefully I'll feel differently tomorrow). Or I will find a way to move my entire extended family and our village to an island where there is only sunshine, therapists and me. (And sugar please.) (And TV). (And DFT (deep fried things). (And books.) OK I'm done.

Raised Catholic, I attended Catholic church on and off for most of my life. I went to Catholic school growing up too. It was wonderful and safe and ideal, but not at all diverse. My mom was the driver in our church attendance. On occasion, my Dad came along as a favor to her. I think he struggled with similar feelings as I do. Who am I in this world of religion, and where do I fit in?

So many churches seem to be selling a different God. Yet God is the same good soul I've always known him to be. I imagine he has a deep and perfectly loud laugh. His eyes crinkle in delight as he watches us when we are happy. He also feels pride as our chest rises and falls as we sleep. He feels pain when we hurt too. He is everything.

A little while back we started going to a Christian church. It felt practically scandalous for this Roman Catholic. I cannot deny on my first trip I felt a peace overcome me that I had never felt before. The music was loud and it's vibration penetrated my very weary soul. The song, "Amazing Grace" brought tears to my eyes. There was community and people there loving and caring about the same thing. Isn't it so good when you find people who care about what you care about?! 

People came as they were- jeans- or motorcycle jacket or whatever. I think I liked that, although I wasn't sure. It's hard to unthink years of being taught something (we do not wear jeans to church!) The out loud Jesus love and amens were kind of funny. Christians love Jesus LOUDLY. Catholics love Jesus quietly, and only out loud if the script calls for it. The amen'ers made me giggle. (You go amen'ers. I like your passion). A lot of the talk was the Bible. It was in a new, unusual and interesting format. I loved how the preacher could connect the Bible to our daily life. I began to read an abridged copy of the Bible from cover to cover. I was so hungry to learn more. The Bible was one of the craziest, most interesting books I had ever read. 

But there were also several messages that felt wrong to hear in the church. Like once the pastor said something along the lines of- if we have a tragedy or pain in our life it could be because we haven't followed Jesus the right way. It might be because we haven't forgiven someone like Jesus forgave us. 

Wow. That sounded so much like... punishment. In that line of thinking- my boys possibly have autism because I didn't forgive someone? That makes me feel angry. How is that right to my boys? And once they mentioned something about specifically about homosexuals being sinners. First of all- AREN'T WE ALL?! and second of all- why are we talking stuff on people IN CHURCH? It doesn't line up with the relationship I have with God outside of those walls. The loving and forgiving God with the crinkly eyes. The one who hurts when we hurt.

When we went to the Catholic Churches here where we live, there were no Sunday schools, and one of us inevitably had to stand in the vestibule with a wiggly, running, boy while listening to the sermon over the sound system. We would leave there stressed and exhausted. Church should fill you up, not leave you feeling spent and counting down the minutes until you can leave.

In the Christian church, I loved that we could drop our children off at Sunday school, and they were loved on and played with so we could focus on the word of God, free of distraction. After an OK from the people in charge, we put both boys in the preschool aged group at the Christian church because it was more developmentally appropriate for them. Parker was three and Grey was five. There were toys and snacks and singing and it was all right up their alley. Those of you with kids know it's hard to leave your babies with strangers the first few times. But when you have a child with Special Needs, it can feel impossible. That slight underlying fear is sometimes replaced with terror. We are taught to listen to our gut, yet our gut often screams- Don't do it. They will not be ok. The people in charge will not know what to do. But we did it anyway, (as we often do) and it was worth it. 

One Sunday about 5-6 months into our church journey, we went to gather the boys up after church. My eyes darted back and forth across the room scanning for my two. I see Parker but I don't see Grey. Someone approaches us and lets us know they had moved Greyson into the Special Needs room. 

My hands begin to shake. What happened to cause this switch? I wondered. Did he hit someone? Yell too much? Why didn't they ask us if this is what we wanted first? Why wasn't this a discussion- not a decision? Sometimes I forget that my boys have Special Needs- but it seems like the world will never ever forget.

As we walked down the halls my mind continued to race. Why would he be happier somewhere else? Do they mean they would be happier with him somewhere else? 

"Was everything OK? I asked Did something happen?" "Oh no, we think he'll just be happier here", I was told again. I ached for the fact that someone could just take Greyson to another room several hallways away. Of course he would go willingly. He is taught he has to do what adults say. I ached because on top of having these hard life things to deal with- most people are too afraid to speak honestly and directly to me. It makes the world so confusing sometimes.

We enter the room and I force on my "I'm fine" face. I have to wear that mask a lot. I go overboard- eyebrows raised and huge stupid smile. I want to burst into tears. Greyson is the only child in the room. There were two grown ups in wheel chairs around a half circle table. Greyson is sitting on the floor, quietly digging through a jar of cars. I get down on his level and try to get control of the tears that threaten to escape.

The woman here have experience with special needs, we were told. They walked us through all the tools they had- Picture Exchange Communication (PECS), and schedules. They told me I could also bring my own schedule for him. The ladies in charge started asking me developmental questions. I know their intentions were pure and they just wanted to understand him better so they could take the best care of him. But it felt like an assessment, an evaluation. It felt like school or a doctor and stress and the rest of our entire life that I hoped we could escape for one hour every week in church. I want one place in my life free of these grilling questions, dissecting how and why he is different. 

Dear world: I just want you to know under all these delays, under speech that is so difficult to understand, under sensory processing struggles and whatever other terms used to describe him- He is a perfect child of God. He is a kid. He loves cars. He likes to eat goldfish crackers. He doesn't like to share. He likes to know what comes next. He is so lovable it hurts my chest.

I was exhausted. I didn't want him to use PECS at church. We were in a stage where learning this kind of stuff was a chore to him. He doesn't know how to zip his jacket, he will not understand Jesus died on the cross for us. And trust me, my boys know Jesus in ways people without Super Powers can't fathom. 

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Parker talks to this Jesus statue all the times. He even listens. 

I didn't want to make up a schedule or bring pictures or laminate and Velcro. I already have to all of this stuff for school. I just wanted to be a mom who dropped off her kids so she could go chat with God. And Grey just wanted to be a kid who could play with toys and follow a predictable routine. 

When Church shopping, so many well meaning folks say to me- "We even have special needs Sunday school." That is not a selling feature to me. There is no Special Needs section in Heaven, of that I am certain. All the kids belong together.

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Jesus said, "Let the children alone, and do not hinder them from coming to Me; for the kingdom of heaven belongs to such as these."

All the children. No labels needed. 

When typically developing children are mixed with Special Needs children everyone wins. Now, if a church has a special sensory room for kids that get overwhelmed by too many kids- I get it. But a Special Needs room should be an option for these kids- not a requirement. We are all better humans when exposed to people who are different than we are. We learn new ways to think and be and act and view the world. This Catholic school girl was in for a shock when I moved from Missouri to Los Angeles when I was 25. I learned so much from people nothing like the ones I grew up with. I learned about diversity, and I am better, more empathetic, more passionate today because of it.

Special Needs kids may also be able to learn appropriate play, communication and social skills better from other children than from an adult. And I can tell you that my two boys teach me more about the world and God and struggle and hard work than all the adults in the world. They offer so much to the equation too.

So often children with Special Needs are frequently segregated. At school, in social situations, in sports, in the community, and in life. It can be lonely and isolating for the children and also for the parents. Church should not be one of those places. I think church should be a place where everyone is welcomed in communion together. The teachers that are comfortable with the Special Needs kids can help coach the ones that are not. I know it can be scary at first, heck I when I realized my firstborn had autism I was so scared I was going to do something that would really irreversibly screw him up. What do I do when he is flying off the handle screaming? What do I do if he starts throwing things? He felt like a grenade that might go off at any minute. But I soon realized that in the end, he is first and foremost a kid. He needs toys and boundaries and love (and sugar. Like me).

But he does not need a Special Needs room to go to at church. Especially one that doesn't have any other children in it. He needs to go to a room that reflects the real world. We do not go to a Special Needs grocery store. We do not live in a Special Needs neighborhood. We do not live in a Special Needs house. Which is good, because there is no Special Needs section in Heaven, and I'm just looking for a little slice of that Heaven here.


  1. Yes. And wow. And Thank you Chrissy.

  2. This is beautiful. Do you ever read love that max ? She has addressed some of these issues too. I was raised catholic and married a Jewish man. We consider ourselves and our kids to a part of a Jewish family that celebrates all holidays with family with love and joy. As soon as I walked in the temple and meet rabbi I felt like home and acceptance, wishing for you the same joy for your family. Everyone is welcomed with love and acceptance with god not a focus on labels

  3. You always have a way to speak to your readers souls, Chrissy. My heart broke and I shook my head yes the entire time I read this. I couldn't agree more and think there should be no segregation so everyone can learn about each other. Get some sleep and a huge cup of coffee as tomorrow is another day, friend. We get to start anew. Sending love from Austin to you and your boys tonight. XO, Amy

  4. Couldn't agree with you more!!

  5. Amen. And thank you. Hugs for today and everyday. xo

  6. This just broke my heart. Of course you don't need a special needs room at church! Ridiculous. I wish I could grab you and hug you and pull you into my church family where they host the whole Senior Graduation breakfast hooplah, even though there's only one kid graduating that year, and where when your three year old is terrified to do the nativity play they hand you a make-shift camel costume and say, "of course you can go on stage with him, Mom" and where ALL the kids of all different ages and abilities play and pray together because that's just how things work in a family. What you're looking for DOES exist and I'll pray for you to find it. You know exactly what's best for your kiddos, and they are so lucky to have you! Hang in there, mama!

  7. As a frequent reader and first time commenter. Wow. I cannot imagine how it felt to have your child moved to a different room without talking to you about it first. And your words about no special needs in Heaven so why at Church ring so pure and true. I wish for you to find a place that will bring you all peace and love. You are an amazing mom.

  8. First time commenter but often comment on your FB page. I find this post interesting and unsettling. We found the greatest church after a long search. Jumped in with both feet and I even joined the Christian Board of Ed. I was hoping to bring a lot to the board and was even more excited when I read the article "invisible families how the church can help. Now after reading your view I feel guilty.
    I hope you can find a place soon.

  9. I always love your blog, friend, even when I disagree with you. :) Such sweet writing, and that picture...

    For our family, having a special room has been a tremendous blessing because the main Sunday School class is just way too stressful for Jack... And my wife is the children's pastor, so she's already looking out for him. Since we opened the room, we have had many kids come through who are now able to hang with the other kids just fine. Early on, they simply couldn't swing it, but now they are thriving. That is our end goal. We don't want separation either.

    But in the mean time, for kids like Jack, and for other parents who know that their little ones won't be able to cope with the madness a regular classroom, this room has made a way for us to have exactly that place of quietness and peace that you're talking about. Without it, we'd be back at home. We can come to church precisely because of this accommodation.

    I'm not suggesting that this is the one right way to do it, or even the right way to think about it. Rather, I think it's just like so many other issues in the special needs community: a blessing for one family might not feel that way to another. Might even feel like a slap in the face. I'm sorry that was the case here, and I pray you find a church home where you can, at last, breath deeply.

    1. And THIS is how you disagree with someone on the internet! GREAT POINT Jason- there is no one sized fits all. I see the reasoning behind your decision, and would have done exactly the same thing. I'm
      adding a mental disclosure to my post saying: UNLESS THE PARENTS WANT THEIR CHILD IN A SPECIAL NEEDS ROOM! think the two things that upset me the most was that my son was moved a building over without a discussion taking place, assuming a Special Needs room was where he was supposed to be. And #2 There were no other kids in this room.
      I pray we find that church for us too! Thank you.

    2. Yeah, that's really bad form. Teachers (even Sunday school teachers) have GOT to communicate well with parents in all of these issues. Our church isn't all that big, so we have the benefit of personalizing pretty much everything, and all in conjunction with the parents. I would have been upset, too.

  10. I hear you on so many points. Recently we stopped going to the children's portion of church, I just did not want to fight it anymore. But I do absolutely agree with you about my child knowing God. I once had a teacher express concern about my child having a lesson and 'feeling the spirit'. My response was I think he knows more of it than you and I ever will. :) As with church and anything else we do- we do what we want, it just might look different.