special needs

Ten Things You Should Know To Welcome People of All Abilities to Church

By J.C. Mitchell

1.    If you have had one or even a few people with special needs in your ministry, this does not mean you know how to welcome all.  Very often when I tell a pastor about my ministry at Open Gathering they start telling me their one success story (which I do enjoy learning from), but they do not seem to understand there is more to do to welcome all.  This is not unlike someone saying there is no more racism because Obama was elected president.

2.    Accommodation is important, but it is not in and of itself welcome.  Having a ramp at the back door may be a financial reality, but if the main entrance is accessible to all that is much more welcoming.  

3.    Having a cry room is great for babies, but children that are old enough to start learning to sit in the sanctuary may make noise. Suggesting that they should go to the cry room is inappropriate.  Yes, some parents would rather go to the cry room, even with a kindergartner or older child, but it should be their choice.  Many children with autism, for example, need to learn by doing the same thing, so going to the cry room the first time will become the way the child goes to church, creating an extra and unnecessary step in learning.

4.    Using person first language should be the assumed way of talking about a person with disabilities. (For more information check out Arc's Website)  Yes, there are some that use their different ability as a proud identifier, and if they desire to use a descriptive such as “aspie” of course use that when referring to them specifically, but one’s name is still preferred.  This is less about offending one with a different ability, but to help those to see the individual and not the diagnosis. 

5.    Do not diagnose.  You may be obsessive and compulsive, but that does not mean you have Obsessive Compulsive Disorder (if you suspect you do, you should get help as well as a diagnosis).  This goes with many diagnoses and when a person hears others being labeled incorrectly, you belittle those that actually live with that diagnosis.

6.    Avoid the word “struggles. “ Unless you say struggles as a descriptive of the way our culture accepts and includes people with different abilities.  

7.    Do know that life is harder, more expensive, lonely, and stressful for families with someone with special needs in the family.

8.    Never assume, as you know what that spells.  Thus keep this question in your pocket, “how can I help you?” rather than “do you want me to show you the cry room” or “Don’t you think your child may be happier to wait in the fellowship hall until Sunday School” (Most kids would be).

9.    Talk about this welcome openly and be open to places you fail.  It may be not possible to include every child in a program like VBS, but work with the parents to include all children.  Generally if you tell me, “Your son is welcome and we will figure it out” after I tell you he has a disability, I am much more suspicious than the church that asks specific questions with a desire to make it work, for the latter knows it is hard work.

10.    When a parent tells you their child has a disability or a diagnosis, refrain from saying, “That’s OK” or “I am Sorry.”  The latter to me is less offensive for it is honest, but the former is simply annoying, for who are you to tell me if it is OK or not?  I realize you mean well, but to say, “thank you for sharing” or bonus “thank you for sharing, and how best can I interact (or help) your child and/or you?” is ideal.  Often the reason we feel compelled to share with you that our child has a special need (or if one self-advocating) is that we think you should know, and we already know it is OK and at the same time awfully difficult.  So if you can go beyond the pleasantries, you will be much more welcoming.

11.    Bonus: Know that the work to welcome all will never be completed, and there is no program or book that will give you all the answers, but I do suggest these three books to develop a theology of inclusion:  

Vulnerable Communion by Thomas Reynolds

The Bible, Disabilty and the Church, by Amos Yong

The Disabled God, by Nancy Eiesland

 

Hearing is Believing; Listening to Autism

By: J.C. Mitchell

 

It is impossible to be in someone else’s head, yet many people try.  People ponder motive and intention as if they can truly know what one is thinking.  It is often a cause of conflict between people and groups, because the perceived intention or motive is a reality to one, and all parties contribute to the confusion and delay, as they would say on the Island of Sodor, where Thomas the Tank Engine resides; bet you didn’t expect me to go there, but that is my point: people assume more than listen. 

All of this gets complicated for those on the Autism Spectrum, and thus I was intrigued by Jessi Cash’s Blog Post, “When I Overheard a Conversation Between My Son With Autism and His Brother”.  She was privileged to overhearing one son ask her other son, “…what is it like being you?” and the resulting conversation was very interesting and helpful.  So much so I will wait till you read it to go on….

Now you know why I referred to Thomas.   I would love to ask this question to my son; however, he is still struggling with communication.  Currently my son’s communication is limited to grunts, hand pulling, and his communication device, with an occasional verbal word; most, however, are a result of parroting or echolalia (scripting).  So if I asked my son such a complex question I would not at this time engage in an answer that would provide such insights, like that gleaned from the conversation recorded above.  

Nonetheless, yesterday as I was driving the car and searching for a radio station, I stopped on a song, for lack of anything better, and stayed on this unknown song.  It was in French, and sure enough I had stumbled on a French Canadian Channel.  The song was simply the opening for a talk show, and I kept on the channel since I was only minutes from home.  Having studied French in high school, and was even president of the French Language Club, I know some of the language.  I can usually understand simple conversations, and I will proudly tell you that I often confused those who are francophones when I worked at Les Trois Petits Chochons, but I couldn’t keep up the charade beyond basic orders and issues, and had to admit I was not fluent. 

So I listened to the conversation on the radio, and at times I knew what they were talking about; the weather, and a movie, but overall it was all a foreign language to me.   I could simply note when they were excited or reflective, but not what the subject was.  That is when I realized that this must be similar to what my son experiences.  He understands what we are saying in specific contexts and specific words, most of the same words I know in French (yes, no, ball, animals, colors, etc). 

I share this simple observation, because for that 10 minutes of listening to the program, I realized how frustrating it must be to hear the conversation, but not understand it, I too found myself wanting to the change the channel, but that is not possible for him.  He certainly understands more than he communicates, and this epiphany of empathy is essential for us all to attempt, even knowing the answer to “what is it like being you?” 



Theodicy: The Question that Should Not be Answered.

By J.C. Mitchell

We love going to the zoo with our son.  The best part is seeing animals that we do not usually see, as well as open space to run.  We bring his iPad with his communication program on it and we practice saying things like:  “I see elephant”  “I see bird”  “I see lizard” and even more complex sentences such as “I like elephant.”  Our son engages better sometimes than other times, and there is of course always an “I want peanut butter & jelly” thrown in, as that is his favorite sentence to create.  So when we are in front of an animal I encourage him to press the appropriate buttons and/or I do it to model conversation.  Inevitably, the children that are nearby watching the animal move their gaze from the animal to us. 

None of them say, “Hello” or engage in a conversation, and worse, their parents do not stop them from gawking.  I bet if their children were staring at a wheelchair or a prosthetic they would at least be embarrassed and try to discreetly change their child’s gaze, and the great parents would engage in a conversation with the one that has a different ability.  Yes, they may wait to do it privately, but I am the one there and I would put money on that not being true.  I also hope you notice that it is quite ironic we are looking to teach our son to converse and the response is to stare and say nothing. 

I do have to admit that in some circumstances people are awesome, like when we went to ”Build-a-Bear” after the zoo (we had a gift certificate) and when we pulled out his iPad to respond what he saw at the zoo earlier, the sales person was wonderful.  She asked what he saw at the zoo, and he navigated off the zoo page and said, “I want peanut butter and jelly.”  She laughed appropriately, as I did as well.  Eventually he choose a black cat.  He loved watching the stuffing being mixed and he picked out a hat for his cat.  We named the cat and added a tutu.  However, most people are not as patient and kind as the sales person, and I noticed parents and other children staring at him as he enjoyed and squealed making his stuffed cat.

Honestly, the stares and the ignoring don’t bother me personally.  Well I lie, but I am so used to it and I know it is more about them seeing something new, than having anything to do with my son or myself.  The staring children are just curious and interested, which I totally understand, and I wait for the bold one that asks about why we use the iPad. I will probably tear up when I show that bold child, and perhaps my son will make a friend even just for that moment in front of the elephants.  The ignoring parents are probably pushing something down they do not want to deal with.  It reminds me of the fear some have seeing a body of a deceased loved one.  They do not want to deal with the image of mortality, or reality.

By ignoring my son, the parents are ignoring questions about their abilities, their children’s, and also why they are “blessed” and others are not.  It is the question of theodicy.  It is honestly the most important part of one’s theology: if you believe that God is good and is Love and is omnipotent, why do bad things happen to good people, and vice versa?  

So how do you answer this essential question?  Do you ignore it despite your children’s curiosity (or congregants)?  Do you make up excuses and exceptions?  The excuses include things like but not limited to: God gave us free-will or God never gives us more than we can handle.  Exceptions include but are not limited to: everything happens for a reason, we learn from our suffering, suffering creates character. 

None of these answer the question, which should not be ignored--but it should never be answered.  It must be lived and engaged.  If you start to answer the question, you will find that theology falls short and you end up with yourself or God as judge. 

When we gather with other families that have a child with special needs (or others with different abilities) the question why is never ignored, but answers are never provided.  The answer is lived by bucking normal.  This is exactly what we need to do as church: stop hiding from the hard question and stop trying to answer it; rather, let us live the answer: Love. 

just too cute not to share.  We named the cat Huckle.  

just too cute not to share.  We named the cat Huckle.  



A Spiritual Routine

By Rev. Mindi

This post originally appeared on Edge Pieces, the blog for Open Gathering, a new Disciples of Christ Church plant on July 9th, 2013. It has been adapted slightly for [D]mergent for a wider audience.

One of the concerns I have as a pastor, and a parent of a child with special needs, is bringing spirituality into AJ’s daily life. As for many parents, church can be hard work. Sometimes people at church do not understand and can make church an unwelcoming place for those with special needs, who cannot sit still or stay silent. Sometimes sensory issues make it difficult to attend worship, and sometimes the older buildings are not fully accessible to those who have mobility needs. Traditional church, because it is only once a week and not every day like school or other activities, and it is not primarily focused on a specific person like once-a-week therapy sessions are, can be difficult to add into one’s weekly routine. We know many families for whom going to church is such a struggle, they do not even bother.

While I am at Open Gathering now, I also serve a small church in Burien, WA.  AJ goes to church most Sunday mornings with me to Burien Community Church. When I was not serving as a pastor when we lived in Oklahoma, I was able to sit with him and try to help him understand the order of service—now we stand, now we sing, now we sit quietly and pray, etc. Routine for many children with special needs is important, and in many of our church worship services, we can establish a routine more easily as the service usually follows the same format every Sunday.  I no longer am able to sit with AJ every Sunday morning as I am pastoring a church now, but I still try to help him understand the routine.  Because I cannot sit with him, sometimes he only understands the greeting time, and I let him use his iPad to stay quiet in the pew until the Children’s Message.  But he understands the routine: he puts the iPad down and comes to sit next to me on the chancel steps.  Then after the prayer, he can run down the aisle to the back and go downstairs for Children’s Church at my church in Burien.

But at home, spirituality is just as important. We try to model that God is in our lives everywhere, not just at church. Church is often just one day a week, and while we may be at the building during the week at other times, we do not have the same routine there.  So at home, we at least say prayers every night, something I have been doing with AJ since he moved from a crib to a bed. We read a book, and I try to read a child’s prayer book or baby Bible as the last story, then I say a simple prayer but fold his hands as well, and I close my eyes. Then I tuck him in.

During Advent, we began a routine of lighting the Advent Candles at home every night and doing a short reading and prayer. We did this at the dinner table so AJ was already sitting. We made sure the TV was off and no other distractions were on. It was a nice ritual of quiet time and reflection for our family during the Advent Season, but it also introduced something new for AJ. While I’m sure he didn’t understand the complete significance of it, he seemed to enjoy us sitting together and lighting candles.

Routine is important for many children with special needs. Establishing a spiritual routine, just like establishing a hygiene routine or any other practice takes practice.  Some families say grace before meals, and that is another wonderful (and traditional) way to introduce spiritual practice in the home.

At Open Gathering, what makes us unique is that we have made worship even more accessible for those used to routine because, while doing emergent-style worship, we have kept the same routine every time we gather: Music, Wondering, Table.  During Music we sing five or six songs from our songbook, songs that become familiar (we usually do two or three that we did the week before).  At Wondering, all are invited to come sit near the table for the Story—in which the Bible Lesson is shared in a Montessori-style storytelling. As part of the Wondering, we also do Work, in which we respond to the story. One can do Work by sharing one’s perspectives on the Bible lesson in a dialogue-sermon (often many of the adults do this in a corner of our shared space), or by staying put at the table and responding with art, crafts, and play. Then we all return to the Table for prayer, offering, and communion. We end by singing our benediction song together “Peace Before Us.”

Because our routine is simple and not a long list in a printed bulletin, Open Gathering is more readily accessible to those with special needs because it becomes familiar more quickly. We also have fewer “rules.” People are invited to dance and move as needed or desired during the Music time. During the Wondering time, we are invited to sit closer for the story, then during work we can sit or stand or move about as necessary.  We gather at the Table again for the end. We are invited to pray together, sometimes to sit together, but we are also invited to be ourselves.

***** 

Church leaders, there are many different ways to do worship. Perhaps you can inspire others to begin a spiritual routine at home, establishing a semblance of spiritual life that works for them and their family’s unique needs.  Perhaps there are families who simply are not able to attend worship due to unique needs or work schedules, but maybe there is still a way to reach out and include others by inviting them to begin a spiritual routine at home.

 

SCOTUS Decisions—Reflections Part 2

By Rev. Mindi

This morning on the West Coast I quickly turned to the news at 7 a.m. just in time for the breaking news to be revealed that DOMA had been struck down, and in the revealing of the decision and the minority opinion it was clear that Prop 8 would also be struck down.

I rejoice in that there is no federal reason for denying people the right to marry or to deny benefits for certain types of marriages. However, the ruling leaves it still up to states to pass equal marriage laws.

As many have already noted, if one really is for civil rights, for human rights—we cannot rejoice fully. Voting rights have been restricted; Euro-American cultural values have been valued as the norm; we still do not acknowledge the T in LGBT. Trans rights are often ignored or scoffed at, though there are currently several court cases for trans teens fighting for their rights in state courts. Teenagers are the ones speaking out for their own rights because teachers and administrators have failed to do so.  And as a parent of a child with special needs, even though we have had the IDEA act renewed in 2004, we find our rights and our son’s rights violated everywhere we turn in the public school system. And we are Euro-American—add in other cultural differences and different languages, and we find that even Supreme Court rulings do not guarantee rights for all will be granted.

As people of faith, we must lead the way on human rights. We must listen to the minority voices in our congregations and beyond in our communities, and work for justice for all. It’s easy to take a quick look at one’s congregation and see some of the issues they face, whether it’s the right to marry, the right to receive disability benefits, the right to get a driver’s license; it’s much harder to know whose rights are violated with the lack of a comprehensive immigration law, who doesn’t have access to adequate health care, and other rights that may be violated or ignored. If we assume a certain issue does not apply to our congregation so we can ignore it or evade it, we are failing the community at large.

Let's Go Dutch

By JC Mitchell

So being a parent of a child with special needs is hard to explain to a parent with a child that is typical (that is physically, neurologically, mentally, typical).   I will be the first to admit at times I have no idea how you deal with the demands of a four year old typical child, for my four year old with autism never talks back and never asks for the newest toy.  Emily Perl Kingley wrote in 1987 this piece that is shared with parents with children with special needs as well as those trying to understand. It is called “Welcome to Holland,”

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This is powerful, and I hope eye-opening, and the second to last line is just as important as the last.  That is the tension.  You can imagine if you did actually end up in the Netherlands and not on the Apennine Peninsula, you would be angry at your travel agent.  For me, the closest thing to a travel agent would be God, so I would express my angry to God at times.  Yes, I would not want to miss the tulips or the windmills, but I express my frustration about the situation to God.

It is however, not going to Holland that I am angry about any more.  I have mourned that and I enjoy the very lovely things of my landscape.  The difficulty is everyone that has been to Italy only wants to see the pictures of the windmills, and not hear about the frustration to the travel agent.  They want to compare Rembrandt with Michelangelo and not hear how many therapies, extra time, money, tears, prayers, and hard work it took to get a Rembrandt.  I have learned Italian (only metaphorically) but none have bothered to learn Dutch, or even Frisian.  That is actually where my anger lies even more, because that is why I am reminded of the pain and difficulty of raising a child with special needs, when those with typically developing children think nothing of our adventure in Holland.

A great example of this insensitivity is within the current school district we live in.  We had a listening session on Monday night, and one group that admitted to be parents of gifted children stood up and spoke Italian and claimed Holland.  That is one step too far. I am angry.  They said their children also have special needs and held up a bell curve.[i]  They inferred that children with special needs are taking resources from their children and thus claimed Holland: Special Needs.  Because I have been forced to speak their language as well as my new Dutch, I realize what they are saying, that their children have special necessities, but to say they have special needs is to steal our language without understanding what we go through.

To cut any more programs and help to children with special needs means a difference between independence and/or reaching full potential for people, while cutting programs for the gifted, means they need to do independent study or create new group situations.  Having been a member of the National Honors Society, (teacher made me join, go teachers!) I recall that I and other truly gifted students studied and did projects on our own, or through civic organizations.  They all made it to college; and yes, some made bad decisions, but that’s life.  My anger is that the superintendent of schools, or anyone else, did not politely tell these people that utilizing another’s label to take resources from them who desperately need it was insensitive and infringing on civil rights.  That’s correct--civil rights.  The population with various disabilities deserve education and yes it costs more, but trust me, the parents take on a lot of the bill themselves.  To me, it is not unlike white families that say the same thing about an immigrant population.

So in my best Italian, I encourage you to read the piece above again, but go forth trying to learn some Dutch.  

Jesus tells us the neighbor is the one who shows mercy, the Samaritan, a person considered lowly and not of the neighborhood.  The language of the Samaritan was that of mercy and compassion, without boundaries.  We need the gifted to be challenged, but more importantly, we need to have compassion for those with Special Needs and at least provide the basic assistance to bring every child up to their potential.  We are not quite there yet, even with great teachers, parents, allies, and SPECIAL children.

special needs kids of all races and needs.jpg

[i] The bell curve is irrelevant for those with disabilities range on both sides of the curve.  I myself was tested for gifted and special education. While gifted programs are simply for a small amount at the top, some of may even require special needs education be it for a physical, learning, mental, or developmental disability.  I footnoted this for this is absolutely ironic that the parents of gifted children did not understand this, or they are just very clever.  Either way, does not look good.