Vaccinate or not?

February 3, 2015
The controversy over vaccinations is heating up again. Like many controversies affecting the Autism community, people are polarized, and find themselves pushed into positions easy to ridicule. The issues are always more nuanced than the media makes them. The feelings, hopes and opinions of parents are strongly held, and quoting scientific studies or public opinion are probably not going to change them.

In my opinion, what we need to avoid is demonizing other parents. How we cope with the issues facing us as parents, the decisions we make, most often come down to a single defining question -- what is best for my child?

On this issue, a parent recently posted this question -- is my child to be sacrificed for the greater good?

Remember the ending of the TV show, M.A.S.H.? In it, a mother smothers her baby in order to save a truckload of people from detection and death. Get past the racism in it and the situation begs the question. For some parents, particularly those who have an autistic child, the demand to vaccinate seems akin to sacrificing their child for the good of every other child.

Everyone's personal beliefs are on display in issues like these. My children are both vaccinated. In the face of any hard tested evidence to the contrary, I would advise them both to vaccinate their children someday. Not because I think necessarily of the greater good, I'll be honest. But because I am far more worried about them contracting measles, and mums, and TB, and all the other diseases.

I realize there are those who will point to the varying abilities of those on the Spectrum and rebuke me as if I were speaking for others. My child is high-functioning, and can appear more neurotypical than other children on the Spectrum.

I would not presume to advise any other parent. I would not presume that my answer is the only answer. What I do presume is that other parents will make that decision wanting only the best for their child.

I presume this because i have the example of a God who is always trying to draw the best form us. Because I believe in a God who does not punish, but who wants truly what is best for us.
 

From Welcome to Embrace

July 15, 2014
Thinking today of what I wanted to write about, I came across a journal abstract published in May of this year. If you are one of those who likes to read the full story, click here. The publication is The Journal of Religion, Disability & Health. Here is a quote from the abstract of the article:

 "studies suggest faith community participation may be more limited for people with disabilities and their families. This study reports qualitative findings from a mixed-methods study exploring the perspectives of 416 parents on the welcome and support they have experienced within faith communities, both for themselves and for their sons or daughters with developmental disabilities."

The article quotes parents portraying some depressingly familiar scenarios. Not one of us at A Special Grace is, of course, surprised. The stories we have heard of families with a member on the Autism Spectrum feeling unwelcome and unloved by their churches are sad, and familiar and legion.

It is the motivating actor behind our decision to continue to offer alternative sensory-friendly worship in our lovely space at Epiphany Episcopal Church in Walpole, MA. After over three years of monthly services, we have been evaluating our ministry. It has always been our hope that someday these alternative services would be unnecessary. It has always been our hope that someday every church would be sensory-aware and welcoming. Not yet though.

Help us by telling us your stories. When it is poiinted out to them, most congregations are willing to make the changes to make their spaces friendlier and more welcoming. And while we cannot alone change the Church to be the all-embracing place our Lord surely intended, we believe that we can change it together. Please use our front-page form to add yourself to our list. Share our blogs and newsletters, and talk about the Kingdom of God that could be here and now in our churches.

Surely the Lord is in this place.



 

Pollution and Autism

June 17, 2014
A few days ago, a study presented in Environmental Health Perspectives journal (reported here) offered a potential glimpse into a linked between pollution and autism. The study, headed by Dr.Deborah Cory-Slechta of University of Rochester Medcical Center, found changes in the brains of mice exposed as babies to fine air particle pollution. These changes correlate to the brain diferences found in people with autism.

As many of us know, the search for the "cause" of autism is a primary source of hope, and at the same time, frustration for autism parents. For many, the search for cause is moot except as preventative. For most of us, our search is toward developing and understanding new strategies, new diets, new therapies that will improve the quality of life for our children.

As a parent of and advocate for people on the autism spectrum, I find myself often wondering where best to focus the attention and resources slowly being brought to bear on our particular issues. For instance, do we continue to follow the medical model of "disease" or "disorder" for people on the autism spectrum? That is certainly the direction of many reaearchers, whose trials are designed to find a root cause for the prevention of autism. The same approach is often taken in the medical pharmaceutical field where the search for a drug or combination of drugs to ease "symptoms" is paramount.

I'm not necessarily arguing against a medical model. But I'd like to see the national dialogue and conversation move away from blame and finger-pointing as to root causes, and more towards support and recognition of some pretty amazing people who are autistic. I'd like to see more late-diagnosed celebrities owning their Aspergers. And I'd really like to see the body of parents -- who are becoming legion in the universal tendency towards judgment of other parents -- becoming primary movers of more loving policies and attitudes toward children on the autism spectrum.

As the Church, what are we undertaking as an effort to assist in the lives of people on the autism spectrum? How are we acknowledging their special gifts, learning from their many talents, and liting them up to leadership positions within the Church? I would not be part of the Church if I wholly condemned it, but I am deeply saddened by feeling all too often that we are missing the boat in this opportunity to be pointing the way for the secular world.

Like everyone else, I'd like to know a lot more about what caused my child to be the way he is. But eve more than that, I want to know that the world will treasure his unique wit, his loving ways and his amazing intelligence. I'd like to know that his sensitive nature will not be confounded by discrimination.

Above all else, I want to know that the Church values him as much as God does.
 

Setting Expectations

June 3, 2014
It came to me rather forcefully at our last Special Grace service (this past Sunday) how acclimated I have become to living in what we optimistically believe to be a sensory-friendly worship experience.

Sadly, we once again had no families coming to worship (more on this later) but we DID have some guests -- visitors from another church in the Diocese. Guests are always fun because they give a chance to articulate what we live. I know for myself I am often so immersed in how we do what we do that it takes an "outsider" question to remind me of why we do it the way we do.

For instance, one of the questions asked by the visitors is how we set limits on behaviors or set an expectation around no aggressiveness. Its a good question, one that should be asked. But its a harder question to answer in our context than it might be in a different setting.

My experience is that setting limits on behavior is a moot point at A Special Grace. Most of the families who attend are already beset by the world's demands about "behavior." Many have been grievously wounded by the judgment of churchgoers in other settings about their child's behaviors.

In fact, we often find that we need to encourage parents to let go a little in our setting -- their anxiety that we will judge their child based on "behavior" sometimes holds them back from fully experiencing that here is a place to experience God. And at A Special Grace, we experience God on the floor, upside down, rocking in our seat, huddling in the tent, wrapped in a blanket or even screaming on the floor. This is life with young people on the Autism Spectrum. Despite any of our best intentions or efforts, it is alternatively messy, elaborately arranged, sporadic, consistent, turbulent or dull. It is always exhilarating. And we have no expectations of "behavior" in our time with God. It is what it is. Or what it needs to be in that place, at that time.

Of course we have expectations that children will not be aggressive with one another, and of course aggression can be a factor of life with a person on the Autism Spectrum. But I have to say that in 14 years of ordained ministry, I have witnessed maliciousness, spite and even physical aggression on the part of NT parishioners. And I have never known one of our Special Grace children to intend hurting anyone in any way. Not saying they are innocent doves, mind you. Anyone who has witnessed the manipulation of an Aspie, or the anger generated by an affront to logic (oh that old Theory of Mind thing again!) knows that our special kids can be just as aggravating and maddening as any NT kid.

So I'd like to offer the expectations that we DO have of participants in A Special Grace; expectations we have of all the families we know and love -- not just those who show up in our physical space to worship together, but those who participate online -- in forums, by Twitter.

We expect that God will touch you in your lives -- in act we know that is happening and will continue to happen. We expect (and hope to show you often!) that you will know how honored and overjoyed we are that you share your family with us. We expect that each and every one of "our" special kids is known and loved intimately by God. We expect that each parent will learn and come to fully believe that ALL of God's children are welcome in God's Kingdom. Including them.

Blessings and love!
 

Autism Diversity

May 27, 2014
Recently someone asked why we see A Special Grace as a Ministry of Evangelism and Mission. "After all, they said,"its really a wealthy white family phenomenon." You can imagine my reaction.

Even setting aside (with difficulty) the outrageous racism in presuming that "Mission" is only applied to ministries engaged with non-white populations (a whole other blog post!), the presumption of whiteness in autism spectrum diagnoses is..well...weird.

There's no reality to it.

A British Journal of Psychiatry study paper stated: "Mothers born outside Europe had a significantly higher risk of having a child with an autism-spectrum disorder compared with those born in the UK, with the highest risk observed for the Caribbean group ... Mothers of Black ethnicity had a significantly higher risk compared with White mothers ..."

A 2010 study from the Centers for Disease Control and Prevention's (CDC) Autism and Developmental Disabilities Monitoring (ADDM) Network*  as shown on the National Institute for Mental Health page on Autism and Ethnicity shows the highest incidence of Autism amongst the Hispanic community.

So this weird perception of Autism Spectrum Disorders as somehow being a cause célèbre of a group of predominantly white families is just that...weird.

I wonder if this strange perception has come about by the constant media presence of a few white celebrities? If so, I'd love to direct some of that attention to outstanding parent celebrities like Holly Robinson Peete and Rodney Peete.

Those of us who know and love and work with people on the Autism Spectrum understand there is a distinct "lunatic fringe" around our issues. In the absence of hard science or hard facts to explain the causes of autism and its rapid growth in prevalence, many theories, "cures" and "treatments" are touted.

We believe that many Christian Church worshiping communities, because of ignorance or misinformation, are not yet able to fully embrace people on the Autism Spectrum. We believe that most worshiping communities do not yet understand the impact of the sensory or social aspects of being Church on people on the Autism Spectrum.

And our mission is to change the Christian Church in those aspects. Not to change people on the Autism Spectrum. Not to "heal" or "cure," but to provide a nurturing and supportive worshiping congregation for families right now -- while we try to spread our awareness to other worshiping communities for the future.

It seems pretty simple to us really. We love the Church. We believe ALL God's people should be welcomed in the Church. And we want to make it so.

 

It's Just Too Hard

May 6, 2014
I hear this on a daily basis. I know, I get it. Establishing a pattern of regular worship with a family member on the Autism Spectrum IS hard. We'd like to say it's not, we'd like to say it's a breeze, no problem. But that isn't the reality. The reality is, it is STINKIN' hard.

Church is hard from a sensory standpoint. Churches tend to be "echoey" places, where sudden loud bangs from dropped kneelers are not at all uncommon. Any music being played is often quite loud and orchestral (split into parts) which can make for a very uncomfortable sensory experience. The worst is (at least from a sensory viewpoint) hard angular pews. For people who can be driven to tears by a seam in a sock, these are all potential sensory nightmares, leading to anxiety, leading to meltdown.

Church is hard from a social standpoint. Even the friendliest church is a landmine of social expectations which are hard to teach and, for a person on the Autism Spectrum, very difficult to learn. Most of our assumptions of social behavior, "Good manners", "friendly behavior" is learned from those around us as we grow up. To make those social rules explicit is the particular challenge of all of us who teach or raise people on the Autism Spectrum. Such rules will never be learned by those on the Spectrum "naturally' or by observation. Churches in particular utilize social rules without an attempt at explicitness.

So Church is Hard. The wealth of support and love for our families is worth the work, though. The abundant peace of God, and the opportunity to be with the Ground of Our Being is not to be missed, even though its hard. Just remember, for every service we can get our kids to, another person learns a little more about what its like to know the amazing, funny, quirky people we know God loves.

Hard but worth it.


 

A Stupidly Optimistic Parent

May 16, 2012
This has been ringing in my mind for a month or so. Its a quote from one of my favorite movies - CLUE, starring Tim Curry, Martin Mull, Madeline Kahn and a host of other brilliant comic actors. Yes, it is a movie based on the board game. 

The line comes from Madeline Kahn's character, Mrs. White. It is revealed that she has had several husbands, all of whom have died under suspicious circumstances. When she is asked, "What was your husband like?", she replies:

             "He was always a stupidly optimistic man. I'm afraid it came as a great shock to him when he died."
In context, it is a hilarious line. In my life, I've been thinking of adopting it as a life philosophy.

Because actually I am a stupidly optimistic person. When people ask for some life history, I've noted that they tend towards a reaction of "Oh that's awful." "What terrible things have happened to you." But, honestly, I just don't see it that way. I've always made it sort of a point to say, "I'm no pollyanna, but..." BUT the reality is, I am a pollyanna.

I am stupidly optimistic.

Stupidly because I cling to a happy and positive view, despite all evidence to the contrary. Stupidly because in my silly and trivial way, I treasure each and every dumb joke, happy thought and silly idea that comes my way. Stupidly because I refuse beyond all reason to LEARN that the world is not friendly, or happy or good. 

I can't help it. Even in the midst of a generation of sarcastic and snarky doom-sayers, I stupidly cling to a view that the snark is only in fun; the sarcasm is a tool, not an ends and not a philosophy. I can't help but see the good in the world, the light -- that happy thing, the place where compassion and kindness hold sway over all. I'm just wired that way.

Because so many of the children I know and enjoy and value and love (including my own) fall somewhere on the Autism Spectrum, I think I must live in a different universe than many other people. I find Aspies a fun and interesting group; I enjoy the challenge of figuring out a way of seeing the world so different from my own; I focus on differences as special strengths and not as special needs. 

 Maybe its an expression of my own geeky childhood that I still think in super-hero terms. But to me, that child who can quote you every statistic of a steel-type Pokemon is Superman. To me, that child who corrects anyone who doesn't make a literally accurate statement in her presence is Captain America. Amazing gifts being exhibited by amazing people.

So, as a stupidly optimistic parent, I am still convinced that the world will come to see my children as I do. Not as people with limited social skills; not as the ones who talk non-stop about preferred topics, or tell event planners how boring their event is. I believe that one day, other people will not try to argue with my children, or tell me how to parent them, or see them as pain-in-the-neck honest.

Someday, everyone else will see that these children are brilliantly perceptive in their own topics. That they are honest because they live fully as who they are, and not as someone else wants them to be. That their inability to enter or exit gracefully from casual conversation means that they actually have a very true sense of what is IMPORTANT, and what really is not. That their creativity and passion is necessary to the world, not because they are somehow LESS than others, but because they are exceptionally more.

See? Stupidly optimistic. 

 

It's OK

January 23, 2012
Recently a clergy colleague asked this question: "How do we let people know we are not judging them?" 

 I have been thinking about it ever since. How do we let anyone know we are not judging them, when the popular image of Christianity promoted by sensational news stories is of a religion that both judges and condemns at the drop of a hat? How do we preach and teach non-judgment when whole churches turn out to hold signs telling the world that "God Hates ____ (fill in the blank)" ? How do we signal non-judgment in our actions when our words might be missing or ignored?

Its a tough one. First-timers at Rhythms of Grace are often nervous about their child's behavior. If their child begins to melt down, they search the faces of the volunteers trying to gauge our reaction. Often they rush in to try to manage the child, nervously watching us to make sure we are not judging. Rest assured parents! I can pretty much tell you what is going through the head of every volunteer there:

"It's ok. We understand your child is overwhelmed or having a bad day/hour/minute. We think very highly of your parenting -- you brought your child here because you ARE a good parent. We don't think they're a bad kid. Please don't stress about it. How can we help?"

For many of us, a child melting down at Rhythms of Grace is a moment of recognition, as well as wry exchange of memories: "Remember when my child threw the Legos across the room? Remember when my grandson started screaming and wouldn't stop? Remember when we started out in the car for Rhythms of Grace and the meltdowns got so bad we just turned around and went home?" WE HAVE BEEN THERE.

Rhythms of Grace is intended to help build community among a group of families who don't have easy access to a nurturing and supportive community. 

Some of our highest high points this first year have been simple. The tears in a parent's eyes when they share communion with their child. The look on a parent's face when their child and another share a social exchange. The amazing glimpses into our children's personalities and thoughts and talents. And the first times we were able to tell a parent -- "It's ok. We want you to be here, screams and all. We're happy to have you."

When families can't make it to a Rhythms of Grace service, we miss them. But we never want them to feel that there is any condemnation that they didn't make it. Beyond all other things, WE UNDERSTAND. And we will be so very happy to see you when next you come.

It's OK.

 
 

Would you if you could?

October 5, 2011

Recently, my Aspie son and I watched all the X-Men movies in order. We frequently do this--take a series of movies, watch them in order, then critique the nuances. As an aspiring filmmaker, my son likes to look for hidden themes and "memes" the director may have included.

In case you don't know the story of X-Men, it involves mutated humans who, through their mutation, possess supernatural abilities. The X-men are leery of "normal" humans, don't understand their motivations, but find themselves in a position of saving the world for all from the bad/evil/misguided folks who seek world domination. X-Men is particular in its portrayal of "normal" humanity's reaction to the X-Men -- Fear, Mistrust, and even Hatred.

The parallels to our autistic children are unmistakable.

As an Aspie, my child has abilities I clearly do not, especially considering that I have ADHD. His powers of concentration and attention to detail are phenomenal. He notices (and expects everyone else to notice as well!) details that most of us miss entirely. 
Like an X-Man, my son can be misunderstood. Like an X-Man, he really is altruistic, although he may not always seem warm and fuzzy in his approach.

The last movie we watched was a story of a possible antidote to the mutation that produced the X-Men. Some X-Men wanted to take the antidote and live a "normal" life. Some X-Men were FORCED to take the antidote (this is the hinge of the drama in the plot.) It raised the question -- "If there were a cure for autism, would you want it?"

This question was also raised this past week at a Diocesan Resource Day in a workshop I offered. I'll write more about the workshop, but I wanted to share my answer: "First, my son needs to know all the things he values in himself, so he can truly know his own worth. Then he needs to know all that others value in him, so he can understand his place in the world. Then he will have to decide for himself."

Would he be the same child without autism? No. Would his life be easier without autism? Probably. The question is really, would his life be better without autism?

I want to share with you a poem he wrote in 2nd grade. It speaks to me of the wonder of a child whose brain operates so very differently than mine (Praise God!)


WHATIFS

As soon as I start to watch TV,
Many whatifs whisper to me:
Whatif the Earth freezes?
Whatif the Earth sneezes?
Whatif a bunny bites me?
Whatif I can’t drink my tea?
Whatif they run out of Lunch?
Whatif I don’t have anything to munch?
Whatif my desk comes alive?
Whatif the door counts to five?
Whatif there weren’t any video games?
Whatif a tree says his name is James?

As soon as I start to watch TV,
All these Whatifs whisper to me.

Your answer might be completely different. Please send your thoughts and ideas to ASpecialGrace@gmail.com or use the form on the home page of the website. --Rev. Rebecca Black

 

*Knowing*

February 27, 2011
Just a quick note on a small revelation I had this week. I started on twitter (never thought I'd like it, but I REALLY do) and discovered what a great place it is to network for the Rhythms of Grace ministry. It really is wonderfully comforting to endure a major meltdown from my Aspie son, only to see someone else tweeting that the same thing is going on in their life at that very moment! Real time communications are amazing.

Now maybe this isn't a revelation for anyone else, but as I started to "follow and be followed" on twitter, I started to notice my reactions to people who communicate with me. For those I follow, the tweets are not generally directed at me personally but go out to everyone. But in an odd way, I come to feel that I *know* them in some way, that we're acquaintances.  That odd juxtaposition of *knowing* someone and yet not really knowing anything about them in a real sense is new to me...especially since my vocation is all about getting to know people in very intimate ways. You can't pray with someone through a crisis and not feel a connection!

Here's the revelation I had: I THINK that that feeling of *knowing* people who are essentially strangers is akin to my Aspie son's way of relating to others. Even those he knows most intimately--me, his sister, his family and friends--are not truly present to him. In a  very real way, we are ALL strangers to him. Not that he doesn't recognize us, of course, he's super bright. But I suspect that he has never really FELT that intimate sense of *knowing* another human being that I feel with him, or his sister, or even with friends and acquaintances.

I could be wrong, of course -- I've found that NOTHING, ABSOLUTELY NOTHING is certain in the world of Autism. My son is constantly amazing me by what he accomplishes, what he knows, what he can do. AND what he finds difficult. AND what he has done successfully before but somehow can't seem to do now, but probably will do again at some point (if you have an Aspie child, you know exactly what I mean! I roll my eyes every time I read the term "secured skill." HA HA) Never Say Never.

Anyway, I'm praying with it and hoping for more insight into the children I love so dearly. Frederica Matthewes-Green paints an image of her autistic grandson as one like an astronaut orbiting all alone in space <Earth to K, are you out there?> My prayer is that little revelations like this may one day bring my little spaceman and I into a place where we can TRULY *know* one another.

I invite you to share your thoughts and experiences...or even follow me! :)