All you need to know about Special Needs and the Church: my post-it note manifesto

I am a dreamer. And I am sick of dreaming in silence. Here it is. My thoughts written for the world to see. I believe God could lay this in the hands of someone who can make this happen. I also believe that this could go no where. Anyway, it is with faith in whatever God wants  I write.

Start Here:
Since September, I have been praying, researching, attending conferences, chatting with people, and really thinking about our time here on earth.  I want to live a life of purpose. Why was I given my children? Why am I here?
My mind is full of post it notes, thoughts, best practices, and gaps that currently exist in the world of special needs-and where, if at all, we fit.  Here’s the bottom line: I don’t know what to do regarding the future of Build with the Boyces.  I am really struggling and thought I would put it out there for the world to respond. All I ask, if you do take the time to read it, is that you let me know if you plan on copying and using any of what I wrote. I also highly encourage you to visit the references below.
History:
Build with the Boyces was formed in 2009 as a direct response to our children’s diagnosis by our friends and family.  It currently has an outdated website and isn’t a non-profit because we were the only ones benefiting-not a group of people-per tax regulations. Its primary function was to build a safe, handicapped home for our children and raise awareness for Sanfilippo in the process. September 2012 we moved in. Done.
The dust has settled, and 2013, I began investigating what we could contribute to the world.  In the 3 years of Build with the Boyces, God used our story in amazing ways to touch others and nourish our souls. It gave special meaning to the lives of Jayden and Brooklyn. God used our brokenness to give Him glory. It felt good. It gave the pain meaning.  It was hard being the beneficiary of so many people’s generosity.  I am really glad, in a way, that part is over. It is hard never being able to pay people back. But I learned gratitude, humility, and grace, along with many other lessons from that season.
I first thought of completely merging with Kelly Hubert, and the Liv Life foundation back in Jan 2013. Kelly and I thought of a mission “to capture and inspire the Liv Life moments in us all”  a one the purpose of LivLife (named after her daughter Livia who also has Sanfilippo). Everyone loves an underdog story that rises from the brokenness. We would capture people’s inspirational stories and post them in a blog for the world to read.  People all over the world would submit stories, walking for breast cancer, loosing 50 lbs., anything that they recognize as a moment they are fully alive.
My honest hesitation with completely merging with LivLife is friendship with Kelly. I never want creative differences, personal opinions, or fundraising/financials to come in between our friendship. She isn’t like that-and I never wanted to come in and be pushy. Selfishly, it is also hard thinking about trading our purple shirts for her pink ones.  So we have put our merging on hold but continue to support whatever one another chooses to do.
BWTB: a non-profit?
So, I thought maybe we turn Build with the Boyces {BWTB} into a non-profit.  It’s a lot of work and money, but worth it for creative control.
But-I don’t ever want to simply add a logo to our story to gain personal recognition.  I don’t want BWTB to be just another organization in the sea of other non-profits. I want it to serve a purpose that doesn’t already exist.  I would rather partner with others that are doing it well.  Which lead me to this question:
If  BWTB exists, what isn’t already out there?
At first, we wanted to support churches as they provide ministry to families-we thought an organization like this didn’t exist. But I soon found out-there are plenty of people that do this-if you can find them.
We also don’t know the first thing about being an organization that informs churches about speical needs ministry because we have never done it. So, I started researching best practices. Through my research, I found that there are many resources that support churches in this very thing (Joni and Friends, Elim, Orange, networking with other churches who are already doing it, books, etc). At the same time, our children’s director at Immanuel acknowledged that Immanuel needed a SN ministry at our church.  That made me think, maybe we don’t need to do anything with BWTB, and we just help Immanuel-but I continue to wonder if God is maybe wanting to do more with us.
Here in lies the struggle.
Is that a selfish thought because we want our kids to matter in this world, and a non-profit with a logo will do the trick?  Or, could it be God prompting us to do something that not only gives our children purpose, but changes the world? If God wants to use us to do something more than just raising our children, we are available, but we don’t know what he wants from us.  We are continuing to support Immanuel’s efforts but I do not feel called specifically to leading the SN ministry at Immanuel.
What to do?
Still with no direction-but a pull to continue BWTB, I am now wrestling with what to do. Part of me feels that we should do nothing.  Enjoy the short time we have with our children. Focus just on them. But-that also seems selfish and dims the light on the potential they offer the world. I still believe that God will work best in the center of the storm…not when it’s over. In a way, this seems easiest in regard to time, but I want Jayden and Brooklyn’s life to touch others-I want to share their beauty with the world while we are still in their midst. It’s like having a rare diamond, and leaving it in a hidden safe if we keep them all to ourselves.
Here’s what we know:
The average consumer wants easy, fast, and the best when it comes to anything, and information regarding special needs is no exception. When it comes to the world of disability, special needs, and the church, there are very few resources available.  And, for the average lay person in church, they will never access any books or training material on special needs. For example, none of my friends read a book on how to reach out to us. To understand Sanfilippo, I had to be the expert. I had to find the correct information and educate them.  Far and wide, the average person is uneducated when it comes to special needs.
Our current culture is beginning to demand church’s become more inclusive. As with most church movements, churches are responding to the demands of the culture instead of being the trend-setters.  Churches are notoriously late to the party.  Almost always, people are reactive instead of proactive when it comes to inclusion and ministry. The world of special needs is excluded in many conversations about outreach, evangelism, and program based ministry.  There is little to no effort from the church to seek out, and include people and families of special needs within the walls of the church. The average church is not prepared and doesn’t see this as even an area of need (“we don’t have anyone with special needs so we don’t need anything”).
Our current culture becoming increasingly aware of people with special needs existing in their communities but find it easier to not engage because they don’t feel equipped.  For example, it is easier to say, “I don’t have a degree in special education”, or, “that is not my spiritual gift”…but ignore the biblical mandate to love  people with disabilities are to the body of Christ. They ARE part of the whole and there are HUGE blessings revealed if you choose to enter in.
the need:
There are no video driven training/interviews/documentaries that are well done, interesting, or compelling to watch on you tube.  There is not one person that I have spoken to so far, working in the field that knows of even the few organizations I have contacted. They don’t know each other.  There is no singular database to find a church in your area that is practicing inclusion. There is no organization making the world of special needs a priority in mainstream America-although there are many great people and organizations around the world doing some really great things. But the average person, or parent shouldn’t have to do an exhaustive 6-month research study to find the best practices. This lack of easy access is a huge barrier to churches providing great services, and parents having access to support and lay people in the church and community being inclusive.
the field is ripe:
It’s time.
The idea of special needs being addressed in church is relative new on a large scale-many churches are just starting to respond. This will be the biggest subpopulation cultural – awareness shift in the next 20 years. 2013 marks the beginning.
Medical advances are helping babies survive that will have special needs that 20 years ago, would have died without the care.  Diagnosis with rare diseases is becoming more frequent because of advances in genetics. The rise of social media brings new information to the lay person’s context {ie. how many people know about sanfilippo because of sharing our story on facebook}. Also, the increase of autism, 1 in 31 boys, can’t be ignored. Once gone undiagnosed or increase due to varying factors, it is now being named and addressed in the schools.  Words like ADHD, sensory issues, downs syndrome are becoming more and more a part of the lay person’s vocabulary. And most important is no child left behind.  Parents are expecting the church to include their child in similar ways {and rightfully so}.  Peers are used to mainstreaming with same age peers with special needs being educated in the same classroom with more supports.  No longer are they being institutionalized.
Another factor regarding culture is the pressures for businesses to be more diverse, inclusive and accessible.  Within a post-modern culture, the pressures to be green, clean, accepting of everyone’s truth, diversity inclusion, and giving back are all part of the modern day cultural landscape. These trends send an ongoing message that people with differences are welcome.  Yet, churches are the least welcome. This is a problem.  We need to get church staff on board and leading the movement, while we educate the congregation and let families know they are welcome and embraced by the body of Christ-inside and outside of the church walls.
Ten years ago, there was a rise in anti-bullying campaigns, The response has been from many has been a more inclusive community.  I think, overall, teens are more inclusive than adults because of this specific campaign, but we clearly still have a long way to go.
grassroots:
Like with any movement,  I believe special needs ministry is a grassroots effort. It is extremely common for the first responders to be mothers {parents}.  In fact, I would guess over 98% of special needs programs are started because a parent of a child with special needs started it.  The very people that have the need, address the need.  The very people who need a break are giving it to others. Many mothers in a church setting are not credentialed in the field of special education or current staff.
Because of the majority of the efforts being specific to each family, in varying states, in varying denominations, there is no “authority” in best practices.  Joni and friends is probably the most notable, but their information is not graphically appealing or their media isn’t  done well….causing people to ignore the great content. They are a bit outdated in their approach.  There are at least two dozen books, a few big churches doing a good job (again-only addressing their specific population of special needs-which is where anyone should start) but no support agency linking them all together in one place. In fact, almost all of information gathered comes from networking with people that are currently leading in the field.
global climate:
If we think the United States is behind, how much more our Christian brothers and sisters are around the world when it comes to cultural influences, accessibility, or resources for families. That being said, I think there are some great church organizations in the world who have the inclusion part down. What if we can offer a you tube channel that anyone in the world could access? What would it look like to do mission trips to share information and train?  We could get PT/OT/ lay volunteers/ speech/tech/nurses/pastors/etc. going into a community to help them with tools to serve the people in their community. And we are blessed in return from the richness in Spirit they show to the people they serve.
parent perspective:
Much of the community is divided, Too many have been turned away from church or simply ignored. Few can’t breathe without the church. By in large, families are not present in church and no one notices they are not there.
With any personal issue, there is a spectrum of feelings. What I have observed most are parents that want help but don’t know how to ask, or don’t want to burden others.  Everything is such a fight, that when they get to church, or a body of believers, it is the last place they want to advocate for their child to be included.  Church, in their minds, and I think Jesus’ mind too, should be the FIRST RESPONDERS. THEY should be the ones anticipating needs, reaching into the family and providing respite, support and love.  THEY should be the FIRST ones “lowering the mat” for the family.
Many lay people don’t understand the dynamics of the family….diagnosis days, grieving the loss of a dream, chronic sorrow, and the physical demands.  They don’t understand the sensitive issues-and some don’t want to out of fear of saying the wrong thing, messing up, ignorance, or they feel uninvited in because they have nothing to offer or the family isn’t around (or asking).  I think what is missing is the urgency to educate and address the lay people. Once they understand, (knowledge is power) most will be inspired to enter in.  In a very non-threatening, inspiring way, we need to educate the average joe about the lens we see the world. Exposing the blessings and the pain. And, inviting them to enter in.
There will be varying levels of support churches can offer.  But, I think the more non-threating you can engage the church in ongoing conversations, the better. At the end of the day, there will always be different approaches for addressing the varying needs specific to each family, but there are a handful of universal truths everyone should be able to grasp.
Cutting edge communication:
There is a huge need to streamline all the resources in the special needs community.
For the family: Parents don’t have the energy or time to sit and look for all the random help and best practices or churches, etc. They want to be able to google “special need’s ministry” and find support and belonging. Most don’t have the ability, energy, or desire to create something at a church….it’s easier to stay home.
For the church: Churches don’t want to reinvent the wheel. If it’s not a priority and staff is not hired to do it, who is the one doing all the research?  They want to buy a video (like bluefish.com) hit play, and train their volunteers, educate their congregation, or support their families.
Social media is where its at. It’s hands down the best approach for today. No one is doing it in this field and we have the opportunity to do something new yet culturally relevant. It also is the best and fastest way to help spread the movement.
Who is doing it well? We interview them. We highlight organizations doing it well. We capture best practices and family stories. Different perspectives. Lay people training (minister to the family). We focus on people-hiding the content and lessons in the captivating story. The 3-5 min. videos are always visually appealing. entertaining. so much so, people want to share it and churches want to buy it. HIGH quality cinematography. Creative. Free support for families.
great examples for you to watch:
soul pancake: {http://soulpancake.com}
cvcnow  {http://cvcnow.com}:
video/training topics:
(never reinventing the wheel, but serving as one place to network resources)
How to minister to the family: duel blessing, physical-emotional support, signing up for the journey
Resources available: interviews
Thriving vs. surviving: documentaries
Equipping a room, what, why, where?-champions club
Building accessibility-not enough: ramps bathrooms rooms halls stairs, etc.
registration online, if you build it, they will come
What does God say about disabilities and how should that inform how we feel/act?
Talking to a typically developing child about differences? {sibshop}
First time guests, training your registration/welcome teams, etc.
5 stages of disability acceptance-Joni and Friends/Elim
Hidden blessings: for the body, acknowledging the cans vs the cant’s-interview friends
Thriving vs surviving for parents, dreaming the original dream for your child, advocating, rest, asking for help, understanding the lens you see life from, same and different support, taking care of you, marriage, child info sheets-interview parents
Volunteer training-Amy Fenton Lee
Best practices for discipline/teaching for volunteers-School Staff
Creating a Christ like culture in the body-Special needs Sunday
Chronic sorrow: understanding the journey
Best practices (language, love, fears, ethos) church statement of values, things not to say or do words that hurt….sin of parents, comparison of pain, god doesn’t give you more than u can handle
Inclusion vs isolation: benefits all for children ministry as well as big church-Special needs teachers
Thinking outside the box: church at a persons home, videos, interpreters, etc.
Sabbath rest, respite-Jill’s House
Partner with your school and community services
fundraising:
Part of the challenge will be raising funds. The primary fundraising will be for video equipment, paying people to edit/make videos if we can’t get it all donated, travel to document interviews, and find best practices and any costs associated with website design or the domain name.
5k walk/run
sell training videos/stories to share in churches (downloadable)
speaking/training
write a book
partner churches/organizations
corporate sponsors
merchandise
we believe:
Everyone has been created in the image of God.
Everyone has a specific purpose and calling.
Everyone has the ability to bring God glory.
God is healer, but He never chose to heal everyone.
We are all broken. This world is not how it should be. Life is unfair.
We all need a savior. Heaven is how it should be. God is fair.
God is sovereign. and all the omni things too.
Restoration for all believers comes in heaven.
We are called to BE/DO the church. Blessings come to people with disabilities AND us with different abilities when we love.
People with disabilities have intrinsic value.
We are blessed to be in their presence. We have a lot to learn from this community.  They are experts in areas that we couldn’t learn with out them.
At the end of the day, parents want for their child what we all want. To be loved and accepted, valued, worthy, and to belong.
It is not enough to be accessible, although, that is the first step.  We need to see the value of them being here and we need to seek them out.
If they are not in the body of believers and valued, then your church is disabled.
You don’t have to be special to enter into the life of a person or family living with special needs. You just have to let God use you to love them.
All families need ongoing support. They need respite. They need to worship together. They need people for the long haul. {don’t we all!?}
additional thoughts {notes}:
God kept his word regardless of Ahaz not trusting him.  God offered Ahaz an experiencing god, he refused. God is attracted by brokenness and humility and repelled by pride and self help.
Strength is weakness and weakness is strength. We learn best through crisis. He takes the training wheels off and crisis teaches you to ride a big kid bike. Isaiah 7:9
Different abilities-not disability
We forget God when we are not thankful
When we see the least of these, we experience their physical brokenness but their wholeness in spirit. It reminds us able-bodied folk, we too, are broken and need a savior although we physically appear whole, we acknowledge our internal mess.
Olympic spirit…Derek Redman Barcelona
The only prayers we pray are for healthy babies and smooth delivery. Why don’t we pray for God’s will to be done and our heart to be prepared for whatever gift he gives?
Even the disciples wanted to skip the suffering servant part of Jesus is life.
why we would exist:
Names: The thrive project, project thrive  {formally build with the boyces}
Vision; the most relevant, engaging, online resource for all things special needs. NEEDS DEVELOPMENT
Mission: find people and organizations that have best practices, make engaging cinematography that tells a story while educating the people watching to help the world become more inclusive of people with disabilities.
NEEDS DEVELOPMENT
people to help:
great communicators. experts in special needs ministry.  people directly effected by special needs (friends and family). Smart people. creative people. people that can do amazing things with social media: photography, cinematography, and web design. people with a huge heart for the vision. people who believe that Jesus was who he said he was.  people that like the creative process, that are open to change, and want to give their best to this.  Oh, and they have to love Jayden and Brooklyn.  Someone {Angie} with strong grammer- can edit, spell, and make words sound clear. outside the box thinkers. Some money people-you don’t have to have a lot of it-just someone who can manage ours.  I need a lawyer and accountant as well. Admin-someone good at admin tasks. (not me)
And….
Still with me?
Which leads me to where we are now.  If we move forward with Build with the Boyces-I am thinking we try to do something no one else is doing. But, this requires money, time and talent….all of which I don’t have and we would be relying heavily on God and others.
That is why I don’t know if we should move forward or can the entire idea.
Maybe I scratch the non-profit completely-
and just offer my help or ideas to Joni and friends or someone else who is established.
I also want to write a book. I just need the time.
Maybe I start there or just focus on doing that.
Maybe I do nothing but enjoy my children.
See why I need your help?
Thoughts???
                    loaded question.
thank you.
if you are interested and have the ability to help, let me know~!
networking:
(this only a few…there’s a ton more-tired of typing!)
JILLS HOUSE jillshouse.org
celebrates children with special needs and provides relief to the extraordinary families who love them through short-term, overnight respite care. oxygen 3-camps, mission trips, rhythm of respite.
ORANGE the inclusive church.com
Book: [leading a special needs ministry] a practical guide to including children & loving families
VIDEO: training volunteers Surviving to thriving
Amy Fenton Lee is the special needs consultant to the rethink group, Inc. Amy has written extensively on the subject of special needs inclusion in children’s ministry environments and has been published in dozens of in-print publications, journals, and on the web.
Books
Andy Stanley Deep and Wide http://www.northpoint.org
Joni E.Tada A place for healing and a ton others Great special needs resource http://www.joniandfriends.org
Nancy Guthrie Holding onto Hope: A pathway through suffering to the heart of God http://www.nancyguthrie.com

2 thoughts on “All you need to know about Special Needs and the Church: my post-it note manifesto

  1. Want to have many more convos about all of this…but I have to tell you how much I love your heart…how much I love your continued commitment to use your pain for God's glory and to benefit others…just wow.

    Like

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