Monday, June 20, 2011

Reflections on visiting a church in our new hometown

We have experienced an incredible week visiting a new-to-us church near our new-to-us town, first, at Sunday School, Sunday, and then at Vacation Bible School, Tuesday through Friday. (I chickened out, Monday.)

No setting is perfect. I know that. I went into visiting not expecting perfection. I do want others to help my girl become an active participant when she's at church, to look for ways for her to be successful, and to think outside the box.

The focus of Tuesday's VBS was about showing Jesus's love to others, which is about perspective taking. This church certainly does that in a big way.

I have to, want to share as many specifics as I can, in hopes that they help another church family or family of a child with special needs.


* The children's pastor spent some time with me on the phone. I felt "heard" and I knew that we would not be a surprise (good or bad) when we showed up on Sunday.

* I spent time with one of the SS teachers on the phone, and spotlighted some "'Rella-isms", was able to ask about snack (there is NONE) and I requested that they write a schedule for her so she could have a "bulletin" for her SS class. They had a schedule written out for her when she arrived. ;)

*I was offered an opportunity to talk to the children before we brought 'Rella to SS. Or the teachers offered to talk to the children. (If I could put my hands on "Jessica's Little Sister", I'd use that, but it is packed in a box somewhere in my house at the moment.)

Amy Fenton Lee has written about visiting a new church with a child w/ special needs here.


* Two moms of young men who are on the autism spectrum volunteered to be my girl's buddy at VBS; they switched off, with one of them with my girl at all times. One of them has given up her own SS class to attend SS both times we visited with my girl. If we stay at this church, I will join the rotation of helpers for other children who need support."

*I have the cell phone numbers of key people in the building. Consider giving key cell phone numbers to the parents. The morning that 'Rella was dysregulated and upset, I was able to text one of the helpers angels from the car, and get help getting 'Rella into the building. Miss Kay came with the total expectation that 'Rella would indeed go inside to her class and have a good time, with a "Hey, your class is looking forward to having you there today!" attitude that pulled my girl right inside to join her class.


The staff heard my concerns about a same-age class. My girl is not ready to be with 6th graders in class. Both the expectations and material would be outside of her developmental stage. They asked what grade I'd feel comfortable with. I think that she's somewhere in the K-2 grade range, but I asked about 3rd grade, and was told that 3rd grade is a great bunch of kids.

The children's pastor also told me that children's church on Sundays during second service only is for kids through 3rd grade, but they don't stick to that if there are kids who are older but need that opportunity. He welcomed my letting her try the children's church and said we'd find someone to buddy with her there, too.

Children with special needs are allowed to come and go as they feel competent. Children are not expected to follow the exact VBS plan. Having enough volunteers that one could leave with a child who is overwhelmed and a quiet room to go to played a big role in the success of the week for more than just my child.


* This church has eliminated snack from Sunday School. All my special diet concerns were *POOF* gone in that single sentence.

* Additionally, they have no cooking center in Sunday School. (Our last church not only would not consider eliminating snack, and knowing that one child would be left out, they also purchased a SS curriculum that included a cooking center where they often made items with wheat flour.)

* They ignored the cutesie and elaborate themed snacks that LifeWay suggests with their creative and engaging VBS curriculum. They offered the kids easy to prepare and set up snacks, and some were (amazingly) okay for my girl to eat. Cookies. Frozen juice pops. A trail mix made from potato sticks, pretzels, marshmallows, many items I could duplicate with not a lot of trouble. (Hallelujah! Our last church insisted on those snacks, and neither the church family NOR LifeWay understands what crafty snacks can and canNOT be duplicated allergen free. There were often snacks I could not duplicate. And trying to duplicate them created a lot of work and expense for me.)


*No pew ladies. Or pew children.

* The children in my daughter's class accepted her as she is. Taller, older, and sometimes talking to herself a lot. This church has several other families with kids w/ special needs. Children who are different are not out-of-the ordinary here. One of the biggest problems in our past at church were the other children. I have a child who can be loud while talking to herself when she is anxious. Hearing a judgmental "shhhhhh!" and "Use an INDOOR voice" from a peer sends her anxiety soaring higher. The day at VBS that my 'Rella was "off" and talking to herself a little, the other kids did not say anything to her about it. That grace is a huge gift to her, allowing her a space to be safe to self-regulate and self-calm.

*One little girl made the cutest picture for my 'Rella and presented it to her early one morning. (Not an inclusion idea, yet I had to include the moment here because it is so special.)


*I think the ability to have the space (and flexibility) for creating and implementing back-up plans is one of the most important pieces of creating a venue for success. My daughter knows she can draw away for the parts of the day that are painful for her and join everywhere else.

*During the very loud and busy opening worship rally at VBS, my girl was allowed to watch from a room outside the sanctuary where the sound could be controlled via a speaker. She was not expected to follow the "rules".

*During the music center of VBS, my girl was allowed to go with a helper angel to a quiet room to draw or paint.

*The church has sensory toys available, from squishy balls for squeezing to Lego for building with during a story. There is a rocking chair available, as well.

*When I told the staff I'd send my child's favorite mints for oral motor and proprioceptive input to use if needed, the VBS teacher bought those mints for the whole class, so my child wouldn't look or feel different. (WOW. This one touches me so deeply; I blink back tears thinking about it. If you have ever had a church member tell you that your child has to learn sometime that she can't eat what everyone else eats, you'll understand this one.)

*I did not think of this one until the week was almost over. A cup of ice water with a straw can be a tool to have available for oral-motor and proprioceptive input. There are so many acrylic cups with lids and straws on the market now, the church could consider having a few available in the building. I brought one. One day, I filled it and my girl sipped it on the way to VBS; one day, I grabbed it as we were walking out the door and we got ice and water at church. I also offered the idea of heading to the kitchen for more ice and water if my girl needed a break. (Note to self: I need to take some packages of crazy straws to leave at church in the sensory "kit".)

*My child is one who was quizzed so much during our behavioral intervention days that a single wh- question about her SS or VBS lesson will send her toward fight-or-flight, and she becomes unable to answer any questions. (We are still beginning to work on narration at home, not on wh- questions about material we've covered.) For children with auditory processing challenges or whose anxiety rises with questions, have some lesson-related activities ready, particularly in the quiet room. I offered to create some word searches or matching activities for my girl. abcteach is made for that.


*Active participation is a topic that is a blog post in itself. As I process in my mind the concept of active participation in a ministry setting, I will probably blog more about this topic.

*The sensory toys and fidgets, the quiet room, the helpers angels are in place not to entertain or babysit, but are used in ways that allow the children to be active participants. Some children need to do something with their hands in order to listen to a story. Some children need to avoid the music center because it is too loud and too dynamic, yet they are successful in the other centers.

*When 'Rella arrived at church for VBS, Thursday morning dysregulated (upset with me for making her miss a tv show for Bible School), I was concerned about 'Rella's ability to self-calm. Would she "flare up"? Or would she calm? I didn't know. Her helpers angels knew where I was volunteering in the building, and early Thursday, Miss Sherri gave me an update. She told me that 'Rella was having a rough morning, talking to herself (scripting), and that her 3rd grade teacher, Miss Catherine, kept giving her things to do to keep her engaged while ignoring the scripting. And the kids were ignoring the scripting, too. The reactions of the staff and peers are brilliant at so many levels. Self-regulation, like all functions in development, begins physically, in 'manipulative mode'. Giving my girl things to do gave her a physical kind of regulation that allowed the emotional regulation a place to happen. Spotlighting the scripting for the class would have increased my child's dysregulation and created negative memories for her. Ignoring the scripting is a gift that allowed more space for self-regulation and self-calming. She felt competent in the action of self-regulation, something that can take some children longer than others.

*Giving everyone an active role is important and I saw that happening. I am not sure whether active participation was deliberate or simply instinctive, but it is in the forefront of planning with individuals with special needs in mind. Finding roles for each individual is critical.

*VBS classes were available for children up to 6th grade. Teens were allowed to volunteer. My eldest was the tallest pre-schooler in her class. She had a fun week helping the leaders of the pre-school class. One teenage volunteer that I got to know this week is a delightful young man with an Asperger's diagnosis as we counted the VBS offering together for four days. We stacked and rolled lots and lots of coins. And his mom (who happened to be one of my daughter's angels as well as an angel to all of the children who needed her that week) came by to ask him to leave the coin counting in order to go be with this child or that child, that he was needed to help with a puzzle. He was allowed opportunities to be an active participant at many levels and in multiple places. (Sidebar: I remember Barb Newman telling us about a church situation where a young man with a disability liked to touch women's breasts, a problem that was happening during fellowship time between services. Newman suggested giving him the job of filling coffee cups at fellowship time - problem solved.)

*They allowed me, a visitor, a total stranger, to participate. I would not leave the building, would not leave my girl. Period. I could have sat on a step in the stairwell the whole time, or in a chair in the hall, I suppose. I headed to the fellowship hall and the staff there gave me gloves and put me to work prepping snacks. Then, a woman from the kitchen brought out a basket of towels and aprons straight from the dryer. I helped fold them. And then I noticed that help was needed counting the buckets of money from the VBS offering. So, I became a floater. And they graciously allowed me to do that in positions that I could slip out of easily if I needed to, because I'm That Mom, the one who wants to be an active participant, yet sometimes is distracted by the special need.

*Our family visited this same church the Sunday that kicked-off VBS. My husband and I attended a Sunday School class with other adults. (Can you imagine?) The class we visited had a get-together planned for the next weekend, and we were included in that. As visitors. Strangers. Yes, an incredibly warm welcome! The guys at my house had a baseball tournament all weekend, so the girls went to the get-together (which included children). It was the first event like that we'd ever attended fully. We've gone to baseball picnics where I came late with 'Rella and left early with her, with someone one-on-one with her the entire time. We've gone to small group dinners where my kids were the only ones there (no one else has kids at home) and the event was short or at a house w/ a pool. I actually got to talk to adults and at times watch my girl outside from inside through a window. A first.

Inclusion is a church-wide project, and I saw so many wonderful ideas at work this week, too special to keep to myself. I hope they give you ideas for your house of worship. And if you have other ideas, please include them in the comments section.


katiewetherbee said...

Penny...thank you so much for documenting this success story. You are an amazing mom, and you have obviously found a welcoming, inclusive place. Please keep me posted as you move forward!
Blessings, friend...

Bekah and Corey said...

Penny, I am so, so thrilled that you found this church!

Anonymous said...

Penny- I am so happy that you and "Rella" has such a good week at our church. She did an amazing job in class. It was such a joy to have her and watch her participate. Just to emphasize that point, she really did participate. I particularly enjoyed her additions to our role playing activities. She jumped right in!

The Lord placed us all just where we needed to be for VBS, and I'm honored that I got a chance to know your family a little bit. Thank you so much for coming and for entrusting us with "Rella." I hope to see you more now that the summer is settling down.

To all of you moms reading, may God bless as you seek the very best for your children!

In His love,
"Miss Catherine"

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