Pope Francis said in his homily last weekend, “The way we experience illness and disability is an index of the love we are ready to offer,” and we saw that firsthand when Sarah Kate was young. Some people were attracted to her energy and determination, and it showed in the way they interacted with her and us. Others were uncomfortable with her, and as much as they tried to hide it, they never really could. I didn’t get upset; instead I hoped they would do the right things long enough that eventually they would feel the right things.
Despite the walker she used early on and the unusual gait she has never left behind, Sarah Kate has always been easily integrated into classes and teams and activities. Some people have been suffocatingly overprotective, but if she said she could do things, they let her. She is a sweet, intelligent, well-behaved girl who can communicate her needs, and that’s made it easy for her integrate well with typical kids. There have been things she couldn’t do, but there have never been people who said she couldn’t do them.
Physically, Nathan can do more than Sarah Kate can.
He isn’t at risk of falling like she is, he can run and jump and swing a baseball bat, and he doesn’t have issues with stamina. But he’s also unlike her in that he is speech delayed and his brain doesn’t work quite the same way as his peers. He is a clever problem-solver, but struggles with abstract concepts. Also unlike Sarah Kate, he didn’t speak early, clearly, and often – he has a speech delay which makes him difficult to understand. His boundless enthusiasm and affection for others is infectious, but not knowing what’s going on in his little mind is a challenge. Like his sister, he’s a flashlight shining into the hearts of all those with whom he comes in contact, but he is also a wild card, a wiggly worm, and an enigma.
Some people are uncomfortable with enigmas.
Last summer, I signed Nathan up for vacation Bible school, but he became a Bible school dropout after the second day. It didn’t bother me much, because I felt like the failure was on me; I was probably too optimistic about his ability to adapt, and I didn’t properly prepare the volunteers for his presence. This year, I arranged for Sarah Kate to be assigned to his class to help with him, but he’s also a year older, has completed a year of kindergarten in public school, and participated in religious education on Sundays, so I expected things to go much more smoothly.
But now he’s a VBS dropout for two years running.
When we arrived on Monday, I learned that the church had asked a retired special education teacher to assist with Nathan (Bonus!). She was there on Monday and both she and Sarah Kate assured me that he was fine. She wasn’t able to come on Tuesday, and about an hour before VBS started, I got a text asking if I could stay with him instead. I said that I couldn’t but that Sarah Kate would still be with him so it should be fine. I was told, “We really don’t feel qualified and would feel much more comfortable if he has an adult with him. If you can’t come it would be best if he pass for today.”
I kept him home and spent most of the day in tears.
Nathan is a mystery, and therefore much more of a risk – I know the dangers better than anyone, because this is our life. But if I decided to opt out of every opportunity that had the potential for danger, I wouldn’t have left the house since 2003. They believed that having a “qualified” volunteer was necessary, but forget that parents like me aren’t qualified when our children are born – I’m still not qualified because as children get older, paradigms shift and parenting tactics must shift, too. I just do the Next Right Thing each day and pray for God’s guidance along the way.
People typically conflate discrimination with hate, but in our experience, things are not so black and white. I refuse to accept that Nathan was truly unwanted at VBS. I don’t see malice, only fear. As the old saying goes, the road to hell is paved with good intentions: the Fear of What Might Happen prompted them to do something to remove the risk, but at the price of keeping a loving, sociable little boy from seeing his “choorch fwiends” and learning about Jesus, and led his sister, a girl whose faith has been deep and abiding for all of her thirteen years, to say she didn’t want to be there if her brother wasn’t welcome.
They felt the reward wasn’t worth the risk; I disagree.
I’ve talked to a few friends and family members about what happened, and the reactions have ranged from sympathy to outrage. Knowing he was a challenge last year, I’m having a hard time mustering anger, because I get it – he’s unpredictable and that’s scary. But I am deeply hurt, not so much because I think he wasn’t welcome, but because they didn’t give him a chance to succeed. They assumed he would fail, and they didn’t have enough faith in us to let him try, anyway.
UPDATED 6/16/16: Between the comments here and those from friends, I’m afraid that there’s a tendency to see me as “hero” and the unnamed VBS staff as “villain” and that’s not my intent. Please don’t do that! Yes, I was hurt and frustrated, but I didn’t want this post to be a vent – it should be instructive, because there is a lesson here: Accommodating special people isn’t always easy, and moms like me appreciate all efforts to do so, even the imperfect ones. But if the planned accommodations don’t work out, we need you to continue working with us to find something that will, not make participation conditional. I know in my heart that the slight wasn’t intentional, but it happened just the same, and I know others have had similar experiences in their own faith communities. I don’t want to start a fight…I just want to raise awareness.
Sending a reassuring internet pat on the back your way. I try to give our church the benefit of the doubt, when they try to include our son in their own awkward, but well meaning way. But, asking your son to stay home crosses a line. It doesn’t sound like they tried hard enough to work with you. I’m trying not to project here, we’re currently struggling with how my son can attend church (at risk of kids’ germs).
You shouldn’t have to of course (I think we all tire from constant advocating)… But, is there a trusted leader/children’s minister you can talk to? Was it maybe a VBS volunteer who made the bad decision and/or asked Nathan not to come? I hope he can participate after all 🙂 You and your husband are great parents, and you have awesome kids!
You are so right about the constant advocating! In my heart, I know that what churches need is someone to champion the cause – to help them see the way to (and benefits of) a focus on ministering to children with special needs. Unfortunately, those who most understand it are the ones like us who simply don’t have the energy to do it, because we are living in the middle of it.
Andi and I could not be more different from each other than we are, and it works for us. I just took Nathan on a 4 day trip to a lineman rodeo in TN where he warmed the hearts of dozens of rough and tumble men and spectators. He had a blast and asked every morning when we walked out the hotel door “friends?”. I would tell him yes, we are going to see friends. The linemen were his new friends and it was the first time they had been around each other.
This reaction from people we think we know pretty well really angered me. Her reaction to this was to write a polite but clear email about her concerns and to pour her heart out on this blog. Mine? Play “Jesus and the money changers”, which is to say, go in there kick over some tables and run people out. I didn’t, but wanted to, and she talked me down from rough talking a couple people. As usual, I’ll appreciate her coaching when I cool down, but its been two days and I’m not quite there yet.
Awwwwwwwwwwwww. The friends thing just melted me.
I told Sarah Kate she didn’t have to quit volunteering because of Nathan – there are other things she could do to help and it was up to her what she chose to do. I meant it at the time, but this morning I admit I was relieved that I didn’t have to drop her off. I don’t think I could have handled hearing “choorch fwiends?” and having to reply with “Not today, Buddy.”
I do not blame you at all, Andi.
I know the church is made up of imperfect people, but when there is stuff like this in a parish, it just makes me so mad. SO mad. Especially when it involves kids.
This is a situation where I’m on the outrage side. 🙂 I Mean, come on–his older sister is with him. What do they think he’s going to DO, burn the place down? Come on. Ridiculous. The lack of adaptation for people with disabilities in the Church really, really drives me crazy. So crazy, in fact, that I wrote blog posts about it….but that’s another story.
I’m so sorry, Andi. This sucks.
Hi. So. I debated commenting but, clearly, here I am. 😉 Who, me? Withhold my opinion?
I’m siding on outrage. My mom was in charge of RE Programs for many years. And. I will share this: My son – the one about to be an engineering major at one of the top schools in the country – was asked to not come back to the “Tweens” program at church. I was outraged then, too. As was my mother and the current program head.
I know not all churches are like this. My own program is different now than it was then.
I’m not feeling eloquent at all, but I needed to post. Outrage.
Truly the church failed him, so Nathan did not drop out. I am certain that Jesus will deal with this. Yes, I am mad
Matthew 25: 40….. What you do for the least of these, you also do for me. I could quote others, but this will do.
I am frustrated and angry for you. There are a thousand things the VBS coordinator could have said, including, “We’ll shuffle our teen volunteers so he has a one-to-one,” “We have added an extra adult to the kindergarten classroom so he can participate!” or “I’m going to work in his room myself.”
I’m sorry. So many big feelings with this and none of them are happy ones.
This!!
Wow! Sign me up for the outrage category. One would think that a one week church event with lots of volunteers would be more welcoming and accommodating than other types of non-church activities where I know Nathan has been welcomed and encouraged to participate. I am sure that his “choorch friends” missed him and wondered why he wasn’t there. I wonder if they were told the truth or given some lame excuse? It was one week for three/four hours a day, really?
I’m not sure how to comment. My heart goes out to you and Mr. Andi. Mr Andi’s lineman rodeo story brought a big smile to my face. As someone who has meet your wonderful family I am constantly in awe at your life together. I think God has a bigger plan to this scenario. Maybe it’s to open more people’s eyes to understanding that we all are different but all of us come with strengths as well. I’m saddened that the VBS didn’t at least let him try more time that day. As a person who works with people who have special needs I am constantly in awe of how much they are capable of achieving. There should have been more patience to the situation. Hopefully this situation will allow for some new thinking in the minds of the VBS admin. I think you and your family are changing people’s minds about children with special needs. Sending you all love from the North.
I am so sorry. Our churches need to do a better job with inclusion, but then again, so does society. It will be up to us as parents and the Nathans and Sarah Kates of the world to be teachers.
I’m sorry VBS wasn’t very welcoming. 🙁 My church doesn’t have a VBS but I was an aide during religious Ed classes this year and my main job was to help the girl with autism. It was a second grade class and she ended up making her 1st Communion just like everyone else! It was truly a joy to be a part of and I hope and pray Nathan has similar experiences someday.
I work with three to five year olds each Sunday morning. We have no special needs ministry in our church (yet), so they usually come our way as well. I remember one instance where a new parent brought us her six year old downs son. After reading your blog for years I do not believe he is as high functioning as Nathan, but we accepted him with open arms. She cried because all other churches had said no out of fear. We said yes with some hesitancy, no fear. He did his own thing and loved the playground. When it was time for service my husband, who had been hanging out with him, gently took him by the hand and led him inside. He refused to sit with us but instead hung out in the back of the room and we had to keep him from playing in the trash. This went on for several eeks, him playing outdsidre then waiting in the back. He always enjoyed songs and would join in from the back. Then one day, he sat in a chair with the other kids and we were all in shock. We had to stop him from pulling the curly haired kids hair but he came and joined us! After that he joins us each time he is there. He comes in with no hesitancy. And while we really have to watch the hair pulling and pushing, he does relatively well.
Honestly I think I have you to thank for it because I’m not sure we would have been as willing to give him or Some of our autistic children a try without reading about cute little Nathan here. Sure there are struggles that are unique to the special needs kids we have to deal with regularly but just like all kids I ask their parents for input a lot and we have had mostly positive results. I can only hope that there will be a brave soul that says yes to Nathan and even though it’s outside their comfort zone sees how amazing the challenge can be.
In our case we feel blessed to be a blessing not only to our little downs friend but to his mom as well.
Monday like 2 days ago? Does it run all week? I know emotions are super raw but I wonder if there isn’t a place for everyone at VBS to learn from him returning Thursday and Friday, especially if his helper friend is available.
No, it was two weeks ago. His helper friend was available on Wednesday, but not Thursday and Friday, so he didn’t go back. Photos from the week were posted in the vestibule last weekend – the one of his class had him in it. It showed ten kids with two teachers and three teenagers to supervise (not including Sarah Kate or the helper lady).
7 grown ups couldn’t manage 10 kids?! Sounds to me like maybe Nathan wasn’t the only challenge in the group! Really sorry you guys had this experience. Our church has a Matthew’s Ministry which is focused on avoiding this sort of mess. I’m not saying we always get it right, but we’re trying. If you are interested in reaching out to them, they are willing to share our experience, materials etc – http://www.cor.org