Tag Archives: individuals

Different experiences, different lives, different language

It is a joy to be working together on this blog with Danae. Danae and I are both members of The Young Clergywomen’s Project which is how we met originally, but her husband Henry and I go way back–more than ten years ago–to a church in Newton, Massachusetts where I was the Associate Minister and Henry was the Minister of Music.

Danae and I have a lot in common, and we’re good friends. We have a few differences, too. She is an Episcopal Priest; I am an American Baptist minister. Her church experience is more liturgical (what some may call “high church”) and my church experience is more free-flowing (what some may call “low church” or “free church”).

We also have different experiences with autism. Danae’s work has been with adults, and of course her marriage to Henry. Danae’s experience is more with high-functioning people on the spectrum. Typically, many adults and youth who are higher-functioning self identify as “autistic.”

My experience has been primarily with children as a mom to my son AJ. AJ has what is often called “classic autism” in that he is delayed with verbal communication (although he is growing leaps and bounds every day) and other basic functions. My husband and I prefer to say “AJ has autism.”

The difference here is language, and for some, this is just semantics. But for us, person-first language is important so that we remember AJ is one child on the autism spectrum. Also, because he is not speaking for himself and we are speaking for him at this time, it is a conscious choice we have made to say he “has autism” rather than he “is autistic.” The Arc, a national organization for persons with disabilities, has a great article on person-first language.

Nonetheless, as deaf and blind communities have reminded us, you cannot separate out your identity. You are who you are. And youth and adults are reminding us that their identity is important to them. Calling themselves “autistic” is empowering, and sometimes our attempts to lift up the person first have failed to lift up the most important part of their identity, how they perceive and function in our world.

So on this blog, we will use both terms. Neither use is meant to be offensive or demeaning at all, but rather to empower others who identify using the term “autistic” or those who prefer to say “I have autism.” As my son grows, I imagine we will continue to have this conversation and speak about him the way he prefers, which of course is to always begin with his name. He is AJ. He is just one person on the autism spectrum, but he is the one I know best.

And of course, we are going to invite individuals to write for our blog as well and speak about their experiences in the church, what is helpful for them and what we need to do as a church to be more inclusive of all of God’s children.

Broken bones

I had intended to try to post every day, starting January 1st, for a year. That was broken yesterday because my son AJ fell at school and broke a bone in his right foot. After spending the afternoon and evening in the local ER, we came home with his foot in a splint and are off to Children’s today.

This post doesn’t have much to do with church, but it is so difficult for a child with autism who is non-communicative to understand what is going on and to explain to him why he can’t put weight on his foot and has to wear a big splint. He kept trying to pull it off for most of the evening and kept taking our hands and putting them on the splint, indicating his desire for us to remove it, and we kept having to say “no, sorry.”

My child is usually very active, running, jumping and climbing everywhere–and it is heartbreaking to see him unable to stand up, unable to move around easily, and he is clearly frustrated by it.

It was also frustrating to have to repeat “he has autism, he doesn’t communicate” to several of the doctors and nurses yesterday. Most got it. But one nurse did not understand, and when they called in an order for pain meds, we told her (as we had told the intake nurse) that he will not take medication orally. She was frustrated and basically stomped out of the room. Incredibly rude, and not helpful–and never came back to offer another solution so he was never given pain meds in the hospital. Something we will have to report later.

But the ER doctor and the other staff were great. And AJ was able to communicate somewhat. He said “scary, scary” to us. He said, “Mommy, mommy,” when the nurse started to wheel him away (I was right behind him but he couldn’t see me) and he said, “Help, help.” He let us know what he needed, and exhausted and tired at home, he let us know he wanted juice and peanut butter and jelly, his favorite.

(Un)Resolved

This is a piece I wrote for Edge Pieces, the blog of Open Gathering. Open Gathering is a church started by my husband, J.C., (and I am now on staff there as well) that is open to all people but especially children and adults with disabilities and their families. The vision really began as a dream for our son, a church in which he would be free to worship as he is, and at the same time introducing the Christian story and worship experience to him and others, including neurotypical children and adults as well as people of all abilities.  To learn a little about our church, you can visit our website, and you can click on this article I wrote for the UncoSynchro blog theme for January.

http://opengathering.org/unresolved/

Welcome to Autism and Church!

Here we will blog about our experiences of having a family member with autism and ways in which church is enhanced by having people with autism as members. We will also blog the challenges and difficulties, suggestions we have for church to be more welcoming, and more. We also invite and welcome individuals with autism to share their experience as well!