Tag Archives: autism

Autism and Christmas

 

On Christmas Morning, AJ woke up at 6:45 a.m. (he came into our room at some point after midnight). I said, “Merry Christmas! It’s Christmas Day!” He dove under the blankets, and I got up, poured myself a cup of coffee, and delighted in the joy of Christmas with my spouse.

At 7:15 a.m., AJ finally got out of bed, and ran into the living room, super excited. Christmas has come! He sat down on the chair next to our tree, a big smile on his face. We pulled down his stocking and spent the next twenty minutes trying to get him to open it, and he opened the first present from his stocking—a small “pin impression” box—where the pins mold to the shape of your hand or whatever you have it on. AJ had one for Christmas two years ago but managed to break most of the pins (the small cheap ones are plastic, as was this one). He loved it. He pressed it against his hand over and over again.

Then he went to his room, and shut the door.

AJ absolutely loves Christmas—he is the reason we get the tree right after Thanksgiving, which we never used to do. He loves the lights, the songs, the Christmas specials (this year, How The Grinch Stole Christmas was his most requested movie). But when it comes to Christmas Day, it is often overwhelming. Too much.

We’ve scaled back Christmas presents. We figured three gifts were good enough for the baby Jesus, three ought to be good enough for AJ. Plus, grandmothers always buy more.

Still, it is overwhelming. This is the day he has been waiting for and he doesn’t want it to be over. Lucky for him, we have learned to practice the tradition of Twelve Days of Christmas, so if he doesn’t open them on Christmas Day, that is okay. He opened most on Christmas Day, the last around eight p.m. He opened one more today, and seemed okay with the prospect of only having to open one gift. It also means that the Christmas carols and movies in our house last a little longer, so that by the time Christmas comes to a close, he is ready to move on.

This year, with Christmas Day on a Sunday, we added in worship services. At my congregation, we did a “Cocoa and Carols” service and encouraged children to come in their pajamas. AJ loved this aspect, and that he could have a candy cane during worship. Also, due to the relaxed nature of the service and the smaller attendance, he could move about more easily. He enjoyed the service and it, once again, took away the pressure of having to open presents.

Most children with autism I know love Christmas, to the point that one parent I know struggles every time it snows (they live in Colorado) because their child is ready to celebrate Christmas again. AJ seems fine with it coming once a year. But the holiday season can become a demand on people with autism—the traditions, the social interactions, the need to open presents and react at what people have given them.

For us, Christmastide has become a blessing, to turn the day into twelve, to have a season to celebrate, and to create our own traditions as a family with two members on the spectrum.

To you and yours, Happy Holidays!AJ and Christmas.jpg

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“Nothing About Us Without Us”

“Nothing About Us Without Us.” This is such an important statement when it comes to disability advocacy. In my journey as a mom of a child with autism, I have had to change my thinking and my way of speaking about AJ, my child with autism. AJ has been nonverbal in the past but he has used an iPad to communicate along with a picture board, and now is becoming much more verbal. As he grows in being able to tell us what his needs and wants are, I am growing in my understanding that I can advocate for him, but I do not really speak for him. He does speak for himself, in words and in other forms of communication.

There is a great blog I want to share from Ivanova Smith, an intern at the ARC of King County here in Washington State where Danae and I live, who writes these very words: “Nothing About Us Without Us.” She also writes that we need to move away from Autism Awareness to Autism Acceptance. Read her article here.

For parents, when their child is first diagnosed with autism, they are given a packet of resources from the doctor or diagnosing team, full of information about services and parent support. I was never given information about how to connect with adults with autism or others to hear their experiences. I knew autism was a spectrum disorder, but all I knew at that time was my child, and later, other parents of children with autism. As much as we want to advocate for our children, sometimes our voice ends up being advocating for ourselves. We complain about lack of resources, but our complaints can turn towards our children, instead of advocating for them.

Now that I know autistic youth and adults, I realize where I have been speaking for others with autism, instead of listening. In the church, we need to include all people of all abilities. We need to include disabled people not only in worship, but in leadership. We need to be better about including people with autism, especially our pastors, youth leaders, music directors and others.

So I am writing now, but we are reaching out to invite others with autism to share their experiences of church, to build a more inclusive vision of who we ought to be as the body of Christ. I invite you to comment here and introduce yourself, and perhaps you can share your story as well.

April is Autism Awareness Month

April is Autism Awareness Month. Two years ago, I wrote this post for [D]mergent on how to raise awareness and acceptance of individuals with autism in your congregation. I have included the text below, and hope that we will continue to add to this to raise awareness in our congregations.

Note that this article was geared towards children with autism and their families–we definitely need to expand the welcome, awareness and acceptance to adults with autism in our congregations and leadership as well.

Autism Awareness in Your Congregation

April is Autism Awareness Month. As you may have figured out by now if you are regular readers here, JC Mitchell and I are the parents of AJ, a 4-year-old with autism. We’re not the first parents to have experienced not-so-welcoming churches, and we’re not the first clergy parents of a child with special needs to advocate for their child. There are some great resources available and I encourage you to check out resources on welcoming people of all abilities.  You can also read back through JC Mitchell’s posts or mine, especially The Starbucks Welcome.

But here are a few tips to help get you started when a family with a special needs member asks about coming to your church or shows up on Sunday morning:

–First, welcome them. Greet the family like you would anyone else. Do what you would normally do for new visitors to help them feel welcome.  In one church I visited, a few members chose to sit with me in the back where I was sitting, so I was not a visitor with my child by myself.  It’s a good idea for any visitor to have someone sit with them and worship with them!

–Ask questions about what would make them comfortable and what would be helpful.  For example: “What is the best way to interact with your child?” “How can we help you this morning?”

–If the family has a child and you have childcare or Children’s church during worship, invite them to those places but don’t pressure them. Some families prefer to have their children in worship with them, some children won’t leave their parents and go with strangers.  All churches are different, and many newer churches are including of all generations.   If a child goes to a different space than the worship service, ask questions about what their needs are and what can be done to help.  Don’t assume you have to have professional child care workers who know about autism or other special needs (most parents haven’t had professional training, either!) Just ask basic questions about their needs, especially any dietary restrictions or allergies (just like you would for any other new child) and assure the parents their child will be safe with you.  Make notes and listen if there are any specific concerns (for example, our child will wander if he is in an open area—he likes to explore).  It is ok to ask a parent to help with a specific situation—such as using the bathroom if the child has toilet issues.  But by all means, do your best to allow a parent to return to worship or Adult Sunday School as you would with any parent.

–Have child and adult “helpers,” if you have other children in your church.  Identifying a slightly older child or youth who likes to help with children can be a great asset. For example, there is one older child in my husband’s church whose job it is to keep a specific eye on AJ so he doesn’t wander off during Children’s Church.  Other adults who maybe don’t want to be drafted for Sunday School might be willing to help out with a child with specific needs.

–If a person with special needs remains in church, know that they will not all respond the same. Some may be sensitive to loud noises; others (like my child) may make some loud noises. Some people have to get up and move around. Some families choose to sit in the back and others choose to sit up front.  As I have always shared, I often hear the sounds of adults saying “Shhh!” louder than I have heard any child’s noise.  Know that there may be some distractions, but as a special needs person gets used to the worship, the routine and structure, they will be more comfortable and surprise reactions will be reduced.

–Don’t assume all families of people with special needs want to immediately connect with other families of special needs—most likely, they just want to connect with this new congregation!  If they ask about other families with special needs, then help make the connections, but otherwise, introduce them and get to know them like you would anyone else.

–If a family looks like they have had an uncomfortable experience, ask them what you can do next time to help be more welcoming. Show that you are willing to listen and learn.

See a pattern here? Most families with special needs simply want to be welcomed like everyone else.  And all too often, they aren’t.  There’s an assumption made by well-intentioned church members that the needs are greater than what we can care for, than what we can provide.  There’s worry about situations that might come up. Most of the time, parents have thought this through before even stepping through the door. Most families are aware of what information needs to be shared to make a comfortable experience for everyone.

I know that as a pastor, I don’t always have it right.  There are times I still have failed to make people feel welcome, but I try to learn and work with my congregation to help make children and adults of all abilities feel more welcomed and included in worship.  So this month, for Autism Awareness, let’s all try to do what we can to be a little more welcoming of people of all abilities, members of the family of God.

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.

Marriage + Church + Autism = Forever?

I (Danáe) am not an expert on autism. I’m a person, probably like you, who is affected by relationships with folks who are on the autism spectrum. I’m an Episcopal priest and my husband (who is on the spectrum and has what was formerly known as Asperger’s) is a professional musician who is the part-time music director at a local church (not mine). We are not unlike a clergy couple because we both have to find calls (jobs) in churches and sometimes that is difficult.

In the beginning of our marriage, my husband was willing to move wherever I got a call because he felt like he would be able to work anywhere. You see, he typically works part-time at a church (he is an excellent music minister–truly compassionate and collaborative) and fills the rest of his time touring with different groups, renting and repairing historical keyboards, and composing. His thought was, “As long as I have an airport, I’m fine.” Well…not quite, as we discovered.

Our first move was to a rural area an hour south of Rochester where I served seven village churches with another colleague (traveling hundreds of square miles) and my husband tried to get different musical projects going and they just didn’t work–not because of his lack of effort or expertise (he pretty much rocks in the self-motivation department and, being on the spectrum, is of course an expert at what he does), but because of the area we were located. When you take someone who has laser-beam focus and ambition and have every door close in their face, you end up with a depressed person whose same focus turns inward. Perseverating, catastrophizing, (“I’m not doing enough! [yes, he was] I’m not working hard enough! [yes, he was] It’s my fault that nothing is working! [no, it wasn’t]”) and meltdowns ensued.  Bad, bad news.

We moved, after only being in that area for eight months, to the Twin Cities where I had taken a new call. This time, we thought, it will be good. Airport? Check. Metropolis area? Check. Known for music? Check. It was good in many ways. Unfortunately, my husband got stuck in a job at a church that squelched all his gifts and we needed the money so badly that he felt he needed to stay (did I mention that being a minister of any kind is not lucrative?). So again, a person with laser-beam focus and ambition is being denied opportunity for self-expression. Same result as last time, although not quite as bad because we had made some wonderful friends that helped alleviate the disillusionment and dismay that was suffered.

Are you noticing any patterns yet? We sure did.

What I did next was to tell my husband that we would move for his job, not for mine. I am not on the spectrum and my personality and skills are a lot more flexible, so I figured that I would find something wherever we moved. So that’s what we did and it seems to be working out better this time. This has not been without stress (I’m working part-time at a church, so money is even tighter), but those stressors are minor compared to dealing with a person on the spectrum not being able to express themselves authentically.

So, we are both wedded to the Church for now, but what is most important is that we are wedded to each other forever. As the non-spectrum spouse, I have found that it’s up to me to be more flexible person because I know that in some ways my beloved just can’t. I’m fine with that, but I know some spouses have a really difficult time with this aspect of being married to someone on the spectrum. Some have asked, “Where have you found God in this?” Everywhere–through relationships with therapists, friends, support groups, and family to every day moments with my husband and our dog. We could not have worked through this without the grace that God has given us in each other and I know God more deeply because of our marriage. For these gifts, I am ever grateful.021

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/

Wandering and Welcome

This was a piece originally published on [D]mergent back in April 2014 for Autism Awareness Month, about a time my son wandered off (and we had to call the police, but we did find him about a block away) and thinking of the time Jesus wandered off at the end of Luke chapter 2. As we near the end of the Christmas season (the Twelve Days of Christmas in the Christian tradition) and away from Jesus’ childhood, I thought of this and wanted to share.

http://dmergent.org/articles/2014/4/1/wandering-and-welcome