I've finally gotten out the book "Leading a Special Needs Ministry: A Practical Guide to Including Children and Loving Families" published in 2013, written by Amy Fenton Lee and Wow! I feel like this is the first time that one of the "disability books" has stood out to me with such an immediate YOU GET IT that I had to read it and not put it down. Actually, I finished reading and highlighting it in about 30 hours, so I guess I really haven't put it down much. It's truly a very simple and natural read, though.
Here are a few quotes from the opening pages of her book:
page 2 "I discovered that by and large, the source of the greatest relational bruising for these parents had been the church." (speaking of parents of children with special needs)
page 3 "My desire was for the next wave of mothers to tell stories of comfort, connection, and renewal when they recounted their church experiences." YES! That's it!!
She then goes in to great detail and answers specific questions about what can be done to welcome a new baby in to the world that is born in to the family of the church body or community that has special needs. She talks practically about the "do's and don'ts" of welcoming a baby with differences. She spends another chapter talking about supporting a family that is in the process of working through undiagnosed needs and the longer trail to diagnosis which come with some more neurological-related special needs later in the toddler or young childhood years.
In chapter 3 Lee goes in to the statistical and trends side of ministry and points out on page 33 that "While a reactive approach to disability accommodation has been the norm, it's time for all of us to get prepared." She continues "Without adequate planning, it's very likely that families with special needs will feel unnecessarily frustrated and stop participating." That has been the biggest point I have heard raised from the many families we have interacted with in the community that no longer attend church. It was too hard to get anything to happen. If something wasn't already established before they came, and no one took the effort to make something happen once they were there, then it was frustrating and they stopped going.
One of the things she wrote that hit me very strongly is found on page 39-40. "Accessibility means more than adding a ramp between the sidewalk and the front door of a building. It includes the ease with which a product, service, or environment can be utilized across diverse "human populations, their abilities and their needs."". If you've seen our family you can imagine why the first part of that sentence would be important to us to begin with- just being able to get up the steps can be an obstacle to start with when we consider the wheelchair. But the difference between putting in a ramp and making an environment which welcomes people with differences is a wide gap! Putting in an accessible entrance without truly welcoming a person with disabilities or differences won't make the difference for a family seeking to belong. She goes on to say "A growing number of churches are taking note of these things and making adjustments in order to remain relevant and engage all of their communities. They are working hard to establish thriving special needs ministries and the communities respond. [...] We must ask ourselves, "If visitors come to our church, will they feel that we are accepting and accessible to people who are different than us?" Repeatedly in Scripture, we see stories of Jesus engaging individuals who were unlike Him, many of whom the society of His day did not value or respect." Now there's some perspective.
In the next sections, Lee spells out how to establish a mission for a special needs ministry, and how to develop accommodation plans for children with special needs. She gives examples, and there's a thick Appendix with even more information to help set up your own ministry pages. Lee tells what a 'job description' for a ministry leader might look like, and even goes in to behavior and participant safety.
The last chapter of the book has FAQs that range from supplies and materials, to what 'steps' to do first when setting up a special needs ministry. Two of the most relevant to me were these (excerpts) "FAQ: What about parent support groups? [...] Answer [...] So, as the church builds its special needs ministry, creating venues to encourage parents and foster their spiritual growth is crucial. However, I personally advise churches to focus first on developing successful accommodation for the child. [...] 1. If we can't successfully care for the child, the lack of childcare will be a barrier to parent participation in those support groups. [...] 2. The church already offers ministry environments for adults. If a church can successfully care for a child with special needs, then the parents are enabled to attend the worship services and small groups already offered. [...]"
Another question I found I was surprised by the answer to, but I do understand it, is this: "FAQ: What about respite care or respite events? [...] Answer: [...] If a parent is able to drop off their child on a Friday night for respite but unable to leave their child on Sunday morning, has the church really done its job?" How's that for a punch? She continues on saying "I learned that few if any of the families receiving respite attend that particular church. [...] the church was not prepared to receive children with special needs on Sundays. There is absolutely no doubt in my mind that the church was doing a great service and ministry by offering respite. But part of me wished that the same energy devoted toward respite could be directed toward Sunday mornings... - Where Children with unique needs could learn about Jesus; -Where parents could attend small groups and worship services because their children with special needs were receiving safe and loving care; -Where an entire community of believers could interact, minister to, and learn from the family of a child with special needs. [...] By focusing first on accommodating children and teens during regular church programming, the church has the opportunity to learn the "ropes" when there's a naturally lower risk and shorter time frame since it's based around a worship service." (page 112-113)
There are several other questions such as leadership tiers, therapy dogs, class ratios (she suggests between 1:1 and 1:4 in case you're wondering ;) ) and age separation.
If your church doesn't already have an established Special Needs Ministry (which, let's face it, MOST DO NOT!), or even if you've got an established ministry but would like some ideas on how other churches have accomplished this goal, then I highly recommend picking up this EASY to read, FACT PACKED book.
To my fellow parents of children with special needs who don't have any accommodations within your church home, here is my recommendation to you: buy this book. Read it cover to cover (I read it and underlined in about 30 hours- while caring for 9 children and sometime in there I did sleep, and eat!), underline the places that 'grab' you and that you feel would be helpful for someone creating an environment where your child could be incorporated in to the church, and keep friends' children's needs in mind as well. Then, pass that MARKED UP book on to someone that can skim through and in 30 minutes know all the 'hot spots' of the book, then choose to read all around those and fill in all the gaps as they have time. This book just might spark them in to understanding the importance of special needs ministry.
**No, I'm not being paid, haven't been contacted by the author, publisher, or other representative, and have not been under any other coercion to write this post. I purchased the book on my own desire and actually- on a whim- and I was so pleased by the content alignment that I wanted to post about it.
I will say, too, that I believe that this book, though VERY thorough, can make special needs ministry "too big" in a way. I believe that a big church with a huge need would absolutely fall in to the category of 'big' ministry that this book lays out. A small to medium church, however, would NOT require a full time staff person, nor really all that 'intensive' training/paperwork/etc in order to get things going. The book mentions that you take what you'd like and leave the rest, because it IS NOT THE BIBLE. :) I like that approach, and in reading it from the perspective of a pastor that is struggling for volunteers or their staff is overwhelmed by what they already have going on WITHOUT a special needs ministry, I believe that it could come across as 'scary.' It is important to note that MOST children when given 1) a buddy and 2) a safe place to go with that buddy if they are not in regular children's programming with 3) appropriate Christ-centered activities available there, then they will be JUST FINE! :) But, all the other info in the book is helpful to know ;).
Amy Fenton Lee blogs at www.theinclusivechurch.com and you can purchase her book through the Orange Store off of this link: http://theinclusivechurch.wordpress.com/2013/04/24/leading-a-special-needs-ministry-a-practical-guide-to-including-children-and-loving-families/