An Inclusive Church

At the October REACH community meeting, I am the speaker. As with most things I do, I am not really certain how I ended up in the place, likely from a single offhanded comment that I enthusiastically ran with, but I have thrown myself into it with my usual vigor.

The subject is “An Inclusive Church”--making churches safe and welcoming places for individuals with special needs.

I am FAR from an expert on the subject. I have no formal training of any kind on really any matter. That part is kind of making me nervous. Public speaking doesn’t bother me; I get antsy right before, but once it comes down to it the combination of my extensive research and practice combined with my inherent passion and earnestness wins out.

Above all, I want to have something worthwhile to say. This conversation needs to happen. Statistics have shown that 90% of families with a disabled member do not have a church home. When you’re talking about nearly 1 in 5 American families, that is a genuine problem.

What is keeping these families out of the church? What can we do to fix it?

What makes me think that I will have anything worth hearing to say on the subject?

I do have my own experiences--one bad, three good--since Gabriel was diagnosed. My observations. And one sad fact: I do not know a single special family, my own included, that has not been asked to leave a church.

We wanted the kids to grow up going to Sunday school like we had, but we were having trouble finding the right fit for our family. Michael and I were young, 24 and 22 respectively, and our religious beliefs were still solidifying, not yet quite fully realized. Both of us grew up in the Church of Christ, learning roughly the same basic traditions and beliefs and practices; we expanded on our well of knowledge at LCU with more challenging advanced theological study (Michael being a youth and family ministry major for several years, he was exposed to more than I was). We were at the point of sifting through all that we were taught and holding it up to our own interpretations to see if we could figure out exactly our particular brand of Christianity looked like.

In Lubbock, I can remember maybe four or five big Church of Christs. We chose ours based on proximity more than anything else, I would imagine. Being relatively awkward socially, I struggle bonding with new people and I had not made friends; Michael is reclusive by nature and is comfortable being on the outside looking in. So though we had attended off and on for a while, we really hadn’t connected with anyone or found our niche.

It shouldn’t have hurt when they (kindly) suggested we worship elsewhere then. I remember sitting there, confused by the language and not really following what was being said. My ear hurt; was I getting an ear infection? I didn’t want an ear infection. What do they give you for one if you’re allergic to penicillin? That was what I was thinking while Michael held my hand and I nodded when it seemed to be an appropriate time and made vague sounds of consent.

At dinner at Michael’s parents later that night, he was telling them how the kids would not be welcomed back to the church’s parents-day-out program the upcoming semester, how they had suggested we would be more comfortable in a different congregation. I remember being confused, arguing with him. That wasn’t what they said, was it? I thought we were just discussing Gabriel’s problem behaviors again.

We had several meetings like that over the course of the year that he had attended there. They were scarcely productive meetings. I had found out a literal hot minute ago that Gaby was autistic--following their recommendation to pursue testing. They were asking me for tips and strategies on how to deal with it.

Why did they think I had the answers? They had more experience, knew more about it at this point than I did!

We would sit there in another one of those interminable meetings, discussing a plan like I knew what I was doing, wide-eyed and pleading because I didn’t know what to do and this was my life now. I didn’t have any answers, I didn’t know who did. This massive, scary thing was crushing down on me…..

...and they were telling us to get out.

No matter how kindly or well-intentioned that was, it SUCKED. They had told me I needed to get Gaby tested for this, and when I did and it turned out he had it, they didn’t want us anymore.

We were devastated. It is like being broken up with. Doesn’t matter that you knew they weren’t the one for you, that it wasn’t going to last forever. It still hurts when they say it is over.

There was a lot I didn’t like about that church. I remember wandering around that first Sunday looking for a class and no one seemed to notice or care that I was there. More sermons than not we had not necessarily agreed with. It wasn’t a bad church, it just wasn’t the right place for us. And the longer we stayed, the more obvious it was that we didn’t fit in.

It took us awhile to work up the courage to try the place they had suggested. Why bother? So they can kick us out, too? Besides, it is way across town and we have heard that it is fairly -whispers “liberal”-. Yeah, I don’t know. That doesn’t sound like the right place for us.

Emerald kept asking if we were going back to bible class though. That is a hard thing to listen to, but what is even worse is watching her face fall when you say, “Not today, honey” week after week. The death blow is when she just stops asking.

So we swallowed our hurt and pocketed our fear of rejection, and we showed up the next Sunday hoping for the best.

How so delighted they were to see us, like they had been standing there holding those doors open just waiting for us to come in all this time. The church is far from small, boasting hundreds if not thousands of members. But they noticed that we were new, and wanted to make us feel welcomed and wanted.

The special needs minister took the time to talk to us, get to know our family and introduce us to the other families like ours, making sure to invite me to the mom’s support group. No chance at being a shrinking violet here because there were so many people that wanted to talk to you, get to know you.

We went to that church for several years, until we moved from Lubbock to Abilene, and during that time I fell in love with it. The teachers for the adult classes were so intelligent and had such engaging discussions--no fluff-piece, baby food lessons. They wanted you thinking, talking, participating. We were making friends, both through the mom’s special needs support group and also through our bible class, who seemed like a big group of best friends.

They took such amazing care of our babies, too. Gabriel we never worried about, never once heard a negative word about. No more scary sit down meetings about how much trouble he was; they thought he was cute and funny and smart and genuinely seemed to enjoy having him in their class.

After Emerald was diagnosed, I thought it was going to be hard to leave her, but her teachers were caring and informed which gave me such peace of mind. Plus they actually had a doctor on standby during services in case of emergencies; how amazing is that?

That may have been the hardest thing to leave in Lubbock. We didn’t want to leave Michael’s family behind and LCS was a good community, but we were scared we were not going to be able to find another place like that one for Gaby.

On first moving to Abilene, we started going to church where my brother and his family plus my mother went, way out on the far side of town.

This church was culture shock, coming from such a big, well-funded congregation to this tiny little home-style country church. There were maybe 50 people, probably less, a good portion of them Jarrod and his group of friends. They made up for their numbers by having the biggest hearts though. It felt like a tight-knit little family where everyone had to work.

The preacher’s wife, an elementary school teacher, volunteered right away to be Gabriel’s buddy. She stayed with him in class and helped him participate, or took him for walks if he was getting too worked up and agitated. No one seemed bothered that he stole food and made messes, or that he was often quite loud during service.

I had already adopted this attitude that you see in a lot of mothers of special needs kids--an existence of constant apology. We don’t make eye contact and apologize profusely for behaviors we should have no reason to be sorry for, things we cannot help. We hold ourselves with a general air of being a burden, just by our being here because so often people are inconvenienced or annoyed by what our kids do. (Disclaimer: Obviously not true of every special mother.).

There is really two reactions to that: either you can get righteously indignant and fight, or you can bow your head and mumble apologizes. I am the latter.

At the beginning of going to that kind little church, I apologized a lot. For Gaby’s messes, for his noises. For Emerald’s outbursts. Sorry I came. So sorry. Sorry I am here. I’ll go now.

The longer we stayed, I stopped feeling like I had to be sorry because everyone was happy to see us, happy we were there. There was this guy that Gabriel just bonded with--no discernable reason other than he just liked the look of this fella, and every time we walked in the door Gabe would run up and give him a hug. He was content and making friends, and we enjoyed service. The members’ beliefs seemed to run the complete gamut, but they believed in friendly discourse regardless, which made for some thought-provoking discussions I enjoyed a great deal.

It was costing us a fortune in gas to get back and forth that we could not afford; circumstances led us to try another church, one that was just down the street from our house. And I mean that literally--if you stand on our front yard, you can see the church.

I went by myself the first time. My overall impression was positive, from caring, helpful people to a service that comfortably fit within my own ideals of church. I left a card requesting more information, describing our particular situation. That week, I got an email from two elders, the guy that helped me find a class (actually not certain of his official position at the church, but he seems to have a hand in just about everything), the preacher, and the children’s minister. The last one set up a time with me to come out and talk to us about Gaby and to meet him before we brought him in.

That right there, guys. That is what got me.

Everyone was so sweet in sending those messages, making me feel like they noticed and cared that I had attended and actually wanted me to visit again. But that children’s minister made it for me. She came to our house and said they would do anything they needed to do to make sure that Gabriel was taken care of and that we were happy and comfortable bringing him there. She listened, she asked questions. She made us feel confident with taking our special boy to this place, that he was wanted and celebrated and would be loved.

We all went that next Sunday, placed membership a few months later, and have been going ever since.

Another day assured us we made the right choice. I had posted on this blog how hard it was for us to go to small groups because of how difficult it is to feed us. An elder that Sunday came up after service and personally invited us--particularly Gabriel--to small group at his house that night, saying us we would be welcomed. We did go, and that invitation made a big impact on me.

It is hard to think sometimes how limited the choices of special needs families can be. Where our kids go to school or daycare, where we live and work, what restaurants and stores and fun places that we can go are all often decided for us because of how it will positively or negatively impact our child. Wouldn’t it be nice if our choice of church was not limited by who would and would not accept Gaby?

That is why I am speaking at the meeting in October. I want to start the discussion--get the thought into people’s minds. I won’t be telling this rather long story; that is really just for my own personal reflection. And to thank you, whoever is reading this, if you were part of one of those three churches that have been so good to us. It was because I saw how good it could be that made me want to help find that for every special family.

If you are in the area and want to come to this community meeting, you are more than welcome. Please RSVP at the email listed on the flyer; we will be happy to have you.

<3

Chapter the Next: Early Signs of Gabe's Autism

Continued from “Swan Dive”: http://weardenfamilynews.blogspot.com/2016/08/in-which-andie-takes-swan-dive-off-deep.html

The process was a lot slower than I would have thought, the road to diagnosis. Michael and I were certainly not hurrying the business along--we didn’t want to rush and affix a label to what amounted to little more than a baby. During all of these specialist appointments Dr. Stripling had set up for us, we were deliberate in our language, revealing only the pertinent information, answering direct questions but volunteering little. Above all, we never used the word. Wouldn’t want to put the thought in their head.

Nevertheless, we couldn’t seem to stop them from saying it, regardless of our efforts or test after negative test:

“Have you considered it might be Autism?”

Considered it? Of course I considered it. It was all I was researching, the subject of every book I checked out of the library. It was this unclear, incomplete picture that I was holding up to compare my little boy to, and I just wasn’t able to make sense of it all on my own.

Three particular behaviors were causing the most consternation for us at the time: trichotillomania, pica, and destruction.

These words were fresh and new to me at the time, in early 2011. I kept turning them around in my mouth, whispering them while trying to reconcile the doughy, clinical word with my pedestrian every day.

I have to imagine I looked a little like Angelica’s “Cynthia doll” (from Rugrats) while the pediatrician attempted to explain compulsive hair pulling to me.

From the time Gabe was a small child, whenever he was anxious or agitated, he would stick his chubby baby fist in my hair and twirl. He himself was bald as a button for the first year of his life, so he soothed himself on my less-than-luxurious locks.

This was still at a time when we worried where many of our meals were going to come from. It was better than it had been, particularly because we were receiving around $200 from food stamps and I had gotten so much better at “budget shopping”, a skill my mother had taught me to maximize limited groceries funds. Most of our meals were filling--heavy on the carbs--but in an empty-calorie, nutritionless way.

Had I had proper nourishment at the time, my fine hair could have probably withstood the persistent touching. As it was, my pregnancy hormones long since gone, Gabe’s sweet baby hand came away with clumps of hair more often than not and my hair was thinning noticeably.

I never saw it as a problem. My sweet cousin Tyler was a hair-twirler as well. Whenever I would babysit him, he would sit in my lap and listen to me read book after book while he softly tugged at my locks. Tyler wasn’t autistic; how was this any different?

Once Gabriel’s soft, flopsy blonde hair came in long enough to grab, I chopped off all my damaged, lifeless hair into the shortest bob I dared. From his spot across the room, sucking on his pacifier furiously, Gabe scowled at me. From then on, he was rarely seen without his fingers entwined in his dirty-blonde mane.

The second one--pica--is also something a lot of parents see. It is when your kid eats non-food items.

I remember a story my friend told me about when she was a little girl. She filled up a bucket with sand and started eating it. Her mother was concerned and wanted to stop her, but her father said she would stop herself when she realized how bad it tasted. When my friend finished the first bucket and went back for seconds, her parents intervened.

We all ate something weird as kids. I used to lick the salt lick before giving it to the rabbits, a fact that years later horrified my mother. My sister ate Playdoh, which most of us know how that tastes.

(credit: http://theoatmeal.com/comics)

I think the distinction came in that Gabriel -only- wanted to eat non food items.

Every paper that I ever wrote notes on, every memo from the doctors, every IEP form--anything pertaining to Gabriel--I have kept in a notebook for reference. It actually helps, seeing how far he has come, and people request documentation frequently so it is good to have them on hand. Recently, I found the notes I had made for the dietician that came out to evaluate Gabe. On one side of the page is “Won’t Eat”, under which was written pasta, potatoes, meat (except lightly breaded chicken), and basically anything decent or edible. On the other side, I had written “Will Eat”, a list considerably shorter that consisted of fruits, fruit snacks, and chalk, cardboard, paper towels, books, mud, and rocks.

During the nicer days, Emerald, Gabriel, and I would spend outside in our lovely little backyard. I would prepare a snack and a drink so they would have something available while we were out there. Nothing fancy, but usually something like mandarin oranges and cheese sticks or pretzels and ham.

Even though he had real food--even sometimes preferred foods, like fruit snacks or candy--Gabriel would rather drink his water out of a stagnant puddle on the ground or sneak sidewalk chalk to crunch.

It was discouraging and often disgusting (I having only mentioned the more conversationally appropriate cravings of his unfortunate habit) because he was getting so little of what his body actually needed. We would go over to people’s houses where he would take bites out of their decorative candles and eat out of their dog food dish, then sit at their table refusing to take a single bite of real food.

I have so many stories about finding him eating things he shouldn’t; you would think that over time we would become immune to it, but he always seemed to escalate just enough to continue shocking and horrifying us for years. The real turnaround came when we started him on this medicine when he was 3. It has a side effect of significantly increased hunger. Almost overnight, his pickiness vanished--if you are that hungry, there isn’t much room left to be picky.

The final issue came the closest to breaking me. I felt like Sisyphus, damned to a lifetime of repeating the exact same tasks every day just to watch them roll back down for me to do again tomorrow.

A little known trait of autism: destructive tendencies.

Before Gaby was old enough to medicate, his body was more energy than he could physically contain. That came out in all sorts of ways, but the most common was destroying things around him.

In the living room of the old house, we had a book case. Four shelves, three filled with books, one filled with DVDs and video games. It was fairly lightweight, though the hefty tomes weighed it down a bit.

At least four times a day, Gabriel would go over to that bookshelf and flip it over, toppling the books and movies to the floor.

Four times a day? Why didn’t you just leave them on the floor until he went to bed and then pick them up?

Two reasons: one, dude still wasn’t sleeping all that much. When he slept, I slept, end of story. And two, because if I left it on the floor, he would escalate the damage--tearing pages out of books, opening DVD cases and snapping the discs in half, ripping the cases in two. If I kept picking it up, nothing got damaged beyond use, and it gave him something to undo again and again.

Same went for the toy buckets in the house. He would lift those up over his head and listen to the rain of the toys on the floor. This one I would make him fix. Gabe follows directions fairly well, as long as you stay beside him and keep repeating the request as often as he needs to hear it to complete the task. The bookshelf and the toys were not awful; frustrating, but easily remedied. Not everything was.

From the fridge, he would remove the food he so obstinately refused to eat and dump the contents on the floor of the kitchen and living room. Pitchers of tea, large bags of flour, crushed up chips. Once, he upended an 8 pound bag of cheese on the carpet. Before I could get the useable parts picked back up, he had grabbed my drink and poured it on top, rendering it completely wasted. We didn’t have food to spare, carefully budgeting precisely how much we would need for each meal and purchasing it all in bulk at SAMs with our once-a-month paycheck; no loss went unnoticed.

He was out of control during these times, completely without dominion over his actions.

I came in once to see him on the floor, eyes full of tears as he tried to put his VeggieTales book, his favorite book, back together after he had torn it apart. We had to take his indoor trampoline away when he snapped the metal bar in half with his bare hands, leaving sharp metal edges for him to injure himself on, and for days afterwards he would just go stand where it had been and not do anything.

As bad as it was for me and Michael--and frankly, it sucked the big one….it was so much harder for Gabriel. He didn’t want to be this way, out of control and emotionally precarious. One moment he would be fine, the next he would be crying so hard we could do nothing to stop it. Life was too much, too overwhelming, and I didn’t know how to help him, how to accommodate him, how to fix it. I didn’t know it at the time, but I was doing everything wrong, because everything you would do for a neurotypical child doesn’t work for him, can often make things worse. Singing when he’s upset, for example, or expecting and enforcing his sitting for an entire meal without getting up.

At the beginning of all of this, right at the first stop where we were getting referrals and starting therapies and researching these words we had never heard before, these behaviors...I didn’t know enough to recognize them as problems. I knew that everyone struggled, that all kids were different, and that everything is a phase. From a combination of young age, no mommy friends, no social circle with kids of similar age to compare to, I didn’t realize that it wasn’t supposed to be this hard. That I needed help, and that if things didn’t change, very soon I was going to burn out.

--Andie