awareness

Disability Advocacy in Your Community

By Rev. Mindi

April is Autism Awareness Month. In previous years for Autism Awareness Month, I have written about how to create a welcoming environment for families that have children and youth with autism in your church. However, there is a greater need within the greater disability community to help support advocacy. Here are some ways you can help become an advocate within the greater community, and therefore your church.

Did you know that you can be an educational advocate?

As a member of my local special needs PTA (Parent Teacher Association), I have let parents know that I am willing to go with them to IEP (Individualized Education Program) meetings. Students with special needs often have an IEP or a 504 plan (a 504 plan provides for accommodations for students with special needs; an IEP provides for individualized instruction and is much more detailed).  What do I do at those meetings? I am a non-anxious presence, there to provide support for the parent so they know they are not alone, as well as for the student. I ask clarifying questions. I am not there to take sides, but rather to encourage dialogue and offer support.

I am also an educational surrogate. I serve as a surrogate within the school district for students whose parents do not currently have custody and are not in the foster care system. I work to ensure that a student receives the supports necessary, which may include an evaluation for services and support and the beginning process of an IEP or 504 plan. I become part of the educational team.  How this happened for me is that I was asked to do this by a district official, who knew me as a parent of a special needs child, a board member for the special needs PTA, and as a local pastor. Since this time, I have now met two other pastors in other districts who also serve as educational surrogates in their district.

You can also join your local special education PTA, if there is one, or help form a community support network for students, as well as parents and educators of students with special needs. It takes the whole community, not just the family, not just the school—to help educate and support our special needs students and families.

Look for local disability advocacy organizations—they often need volunteer help—and partner with them. The ARC is a national disability advocacy organization with local chapters that has folks with disabilities on their staff and boards, and works to help individuals become self-advocates. With any disability organization, always check to see where its funding comes from, how its funding is used, and whether or not persons with disabilities serve on its board and staff. Persons with disabilities should be included in their own advocacy.

And as always, remember to include folks with disabilities in your church life. Folks with disabilities are already part of your congregation. They may be regular attenders in worship, but sometimes we forget that folks with disabilities can, and should, be included in leadership, worship, education and outreach—in other words, all aspects of the life of the church just as anyone else. And above all, be an advocate, wherever you are, for inclusion of persons of all abilities into our faith communities.

Rev. Mindi and her friend Rev. Danae Ashley launched Autism and Church in January. They are looking for more contributors, especially from adults and youth with autism, to write from their experience.

Pastoral Care to Families of Children With Disabilities

By Rev. Mindi

As I wrote a couple of weeks ago, October is Disability Awareness Month. Being both clergy and a parent of a child with a disability, I thought I would share some of my experience for other clergy and church leaders in terms of pastoral care to families of a child with a disability.

When, at twenty months old, our son AJ stopped talking completely, we knew something was wrong. Our son had never said much—just “Hi,” “Uh-oh,” and “Mama.” But he knew at least twenty baby signs, and he would pick a sign up in a day, such as “more” and “all done” and “milk.” But this all stopped by the time he was twenty months old. At twenty-two months he began speech therapy and continues to receive speech therapy today at the age of six.

 

When AJ was three, we received the life-changing diagnosis of autism. I didn’t know what to do, or what to think. I was completely overwhelmed by the amount of information on the internet and in bookstores, much of it contradictory. We tried different diets, we tried different supplements, but nothing really changed AJ’s social or behavioral patterns.

A good friend of mine who has a child with a disability gave me some advice: I needed to grieve the child I had lost. It sounds harsh. My child did not die, they just received a diagnosis, a medical categorization, but my child had not changed from who they were. But at the same time, she was absolutely right. I needed to grieve my own dreams and hopes for my child, now lost probably forever. My child will most likely not grow up to be a great scholar or star quarterback or Olympic swimmer.

The truth is, most of our kids don’t grow up to be those things. At some point, our dreams as parents have to die and we have to mourn their passing, but we usually have a lot more time to recognize it. Parents of children with disabilities or life-changing illnesses have to make this leap a lot earlier and a lot faster: we have to grieve, and then we have to accept our children.

But society around us is very slow to catch up. I cannot tell you how many well-intentioned people have told us “just look at Temple Grandin!” Very few children with autism grow up to be like Temple Grandin or have the resources her mother had when Temple was a child, to attend private school, to have a full-time nanny, to be sent to an alternative boarding school as a teen. Most of us do not have those kind of resources available. And even those with good financial resources cannot always expect that their child will develop and grow the same way. The mantra is, “If you’ve met one child on the autism spectrum, you have met one child on the autism spectrum.” Every child is unique.

The truth is as a society we like to gloss over the challenges and difficulties many people face, with good intentions: we want to cheer them up, we want them to find hope, and somehow we think that our words will bring that. Hearing so many times, “He’ll be all right,” “He’ll grow out of it,” “He’ll catch up,” does not help me at all. It’s true he will be all right, no matter what his diagnosis or ability. It is not true that he will grow out of it. And I do not know whether or not he will catch up, and neither will you, because I am guessing you are not an expert in autism spectrum disorder. 

What is helpful is hearing, “That must be hard,” or “Thank you for sharing that with me,” when I or another parent of a child with a disability shares what they are going through. Also, silence is also acceptable. Just having someone to listen as we struggle and advocate and support our children is more than society often gives us.

I am a glass half-full kind of person. I still have a lot of hope for my son. Recently he is starting to verbalize more, repeating words and phrases from TV shows and songs for the most part, but he is using some of it in context. He seems to understand what he is being asked a lot more than he used to. He uses an assistive communication device (currently an iPad with speech software) to make his requests known and sometimes to comment on things that he likes. He also spells out words and is trying to read more. I have hope. Maybe someday he will go to college. Maybe someday I won’t have to buy large diapers in bulk. Maybe he will still live at home the rest of his life or have to live in an adult assisted living facility. And all of that is fine. One step at a time. 

Thank you for listening to me. Please be sure to listen to other parents of children with disabilities.

My son spelled this out in my office one day. I know that I have to be his voice, until he can speak for himself.

My son spelled this out in my office one day. I know that I have to be his voice, until he can speak for himself.

Wandering and Welcome

By Rev. Mindi

It had only been ten minutes at the most, maybe fifteen since I last saw him. I had looked outside the window as I was finishing cleaning the kitchen and had seen him playing in the yard. Then I had sat down at the table and I swore I could still hear him just a few minutes ago.  Then JC came upstairs and asked, “Where’s AJ?” I looked outside and couldn’t see him. “He must have gone around the corner of the house,” I replied, but I wasn’t worried. While there was no fence on that side, there was a lot of tall brush that would be hard to get through. Except that volunteers from the church had just come to do landscaping that day and had cut most of the brush down.

AJ was not there. We started calling his name as JC went over the side of the brush and into the front. I checked all through the yard and then went inside. Maybe he had come in while I was distracted? I looked through the entire house, then went downstairs and into the garage. No sound, no sight of him.  I came back upstairs and out the sliding door. Nothing.  I called over to our church volunteers and asked if they had seen him, and they had not. Then I pleaded with them to help us look, as I saw my husband begin to run down the side street in front of the house.  They seemed a little baffled that we were so frantic, as they were certain he couldn't have gone far. I grabbed my phone and called 911 to report that my son was missing.

While on the phone, I searched the entire house again as the operator asked me to check under all the beds and closets.  The operator stayed on the phone with me until an officer pulled up in front. I shared the picture of my son with the officer and a description of what he was wearing. Now some neighbors walking on the street heard us and offered to help search for our son. I had been fairly calm, just certain he was around the corner until I realized that ten, maybe fifteen more minutes had now passed.  The officer radioed the description of our son and that he was non-communicative.  And just as a second officer pulled up, JC walked up the street, carrying our shoeless boy.

The officer was calm and happy for us, and told us we did the right thing. So many children with autism wander and many are drawn to water (and our son does love to play in water if he can find it), especially ponds, steams, and swimming pools. My husband had found AJ just down the street playing in the backyard of a stranger’s house. JC would not have seen him had AJ not just stepped off the back porch for a moment and gone back up the neighbor’s steps. AJ had a scrape on his knee, probably from falling while jumping over the side of the yard onto the concrete, and since he could not get back up the way he came, had probably just wandered down and across our busy main street by our home into another backyard. He was not worried, nor was he crying, nor was he afraid. It was just another yard.

It was almost six months later when I connected our story of losing AJ for an afternoon to another, familiar story. Imagine a mother and father traveling with their extended family and neighbors, doing something they have done every year around the holidays.  They know their son is a bit different, but he’s still a kid just like other kids.  They are on the return trip home and it hasn’t been that long—only a day’s journey, when they realize they can’t remember the last time they saw him. Didn’t we see him at lunch? Or was that breakfast? Wasn’t he with his cousin? Or was he with the other cousin? The parents begin to be worried, and start looking among all their families and friends and realize their son is not with them. They head back to the city and search for him. The news starts to spread among their friends in the city and people are out looking for their little boy, but no one can find him. Another day passes, then two, then three. Then finally, they go into the temple and there he is, sitting on the ground with the teachers, listening and asking questions. It was just another day. He wasn’t worried, nor was he crying, nor was he afraid. Instead, he asks his parents, “Why were you searching for me? Did you not know that I must be in my Father’s house?”

Sometimes we imagine that Joseph and Mary must have been angry and upset in this moment. I wonder if they were just so glad they found him. As you might understand, this story resonates with me and other parents of children with autism. While it is true all children have a natural curiosity and may wander a bit, children with autism often do not understand boundaries and safety. They do not understand that going someplace that is unknown may not be safe, because what they have known is safe. They may not look back for a parent or guardian to be close by. And they may not know that they need to ask for help, nor be able to communicate that need effectively to others.

April is Autism Awareness Month and today, April 2nd, is World Autism Day. The numbers are staggering: here in the United States, the CDC just raised the rate to 1 out of 68 children, and 1 out of 45 boys are diagnosed with autism. We do not know exactly why the rates are increasing nor why is it so prevalent in boys but there are girls also diagnosed with autism.

There is probably someone in your church who has a friend with autism, or a grandchild with autism, or they themselves may have autism. We as the church generally have not done a great job of including and welcoming those on the autism spectrum. We have turned around and shushed children who cannot sit still or be quiet, and many children on the autism spectrum have difficulty sitting still or make spontaneous noises. We have told parents that they cannot leave their children in the nursery because they are too old or too big, and we have told them they cannot attend Sunday school because they are still not toilet trained and are a distraction for the other children and teachers. We have not included people with autism, or with other disabilities in general, into the life of the church beyond a general welcome to worship, and even then we may not feel entirely welcome.

In our congregation, as people have come to know AJ, they also know that he likes to head out the back door. On occasion I have to run from the front of the church, but most of the time someone is keeping their eye on the stairs or the back door now. AJ likes to explore and wander, but now the church recognizes him as one of their own, and they do their part to help.

We see Jesus welcoming the children when the disciples wanted to send them away. We see Jesus embracing the ill and disabled when the disciples wanted to ignore them.  We see Jesus turning to those who cried out to him when the disciples wanted him to move along quickly.  

But when I look to Jesus, I also see our humanity reflected in him. I see someone who loves, who grieves, who prays, who wonders, and who wanders. I see Jesus as a child similar to my own. I see my son’s autism reflected in Jesus. For Autism Awareness month, let us all see Jesus reflected in the children around us, and let us learn to welcome them and to help keep them safe and loved.

 


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.

Flee to the Desert

Been thinkin' a lot lately about St. Anthony of Egypt, whose feast day was January 17th. Love his vision of the Christian life, rooted completely in Jesus' way: give up EVERYTHING for God. No, really, everything, that you own and possess, get rid of all that shit, if you really wanna find God. So Anthony did, sold off everything in his rather comfortable life, and took to the Egyptian desert. Everything that we all just take for granted in our lives- food, house, clothes, wealth, all possessions- given up, for God. It gets better, though, because Anthony begins to really understand why Jesus calls us away from our possessions. See, all those things that we cling to, they keep us from dealing with ourselves. That's what Anthony got to learn out there in the wilderness, that all those pleasant distractions help us forget about the Self, that is our worst enemy. Anthony's famous for wrestling with those demons out there in the sand, but the worst part of his struggle was the temptation to give in to sin and evil, centered ultimately in Self.

Anthony woulda made a great Buddhist, as he teaches us to cling to nothing, not even, and especially, the Self. Anthony would also made a great Mulsim, because he teaches that our greatest struggle--in Arabic, jihad--is with the sin that we allow into and control over our Self. But in the end, Anthony became one of the great Christians of all time. Jesus calls us to give up everything, not just so we can find our way to God. That's actually the easy part. Jesus calls us into the desert life so we can also confront our Self, and the sin that we keep all nice and tucked up within it. When we understand the discipline it takes to make the Self a servant of God, rather than a servant of wordly possessions, or the sin that creeps so easily within, we understand the life Jesus leads us all to live on our way to God.

Now, I obviously don't live in the desert, and certainly have just as many possessions as anyone else! So I usually have to improvise to make my way to a "desert." I have found it now and then. I push all my possessions away, and take a deep breath into my Self. I wrestle wtih all the demons that I find there, and confront the worst of Me. Right in the midst of this cloudy and cluttered world that Anthony fled. I still have the luxury of returning to all my distractions, but I do look forward to the day when I don't. Yea, by God's grace, and a lot of work, I'll just go set up some lean-to somewhere--the middle of one of those big old cemeteries has always appealed to me- and take up this life of a monk, a "monad"--alone, like Anthony...like Jesus. Like Siddartha, and Muhammad, and the great saints of God's Truth. Alone with the gift of the Self God gives me, that, with discipline, leads me right to her...

St. Anthony of Egypt, please pray for all of us, especially as the Lenten season approaches....that God may help us find our way to our deserts, and into Her heart, and a more complete Self, as certainly as She helped you....

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