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Special Needs Ministry – The Fear of Getting it Wrong

August 25, 2012

By now many of you know this much about me…I’m not credentialed in any field related to special needs.  And I am not a special needs parent.  My child went through a few months of therapy for some mild sensory issues years ago and that experience was eye-opening.  But generally speaking, my child and my life would largely be considered “typical”.  So as a somewhat ignorant lay person (not a professional and not a parent), one of the most difficult aspects of being a writer on the subject of special needs inclusion, is the fear I’ll get it wrong.

To a person like me, learning the vernacular, the people-first language, and the expressions that are acceptable for writing about disability were initially really tough.  Several years ago I felt a gravitational pull (i.e. a God-calling) to begin researching and writing on the subject of special needs inclusion in the church.  But when I first started, I faced a pretty steep uphill climb because of my lack of familiarity with the special needs culture.  And to add do that, I am not a trained or educated writer.  I had a gracious friend who was a special needs professional who reviewed many of my first articles.  She would (thankfully) tear my drafts to pieces.  She grew so tired of explaining to me why my word choices might offend readers.  Hours and edits later, I would finally land on a 500 word article to submit to a publisher.  And still that wasn’t good enough sometimes.  One editor (who was a Christian) spent probably an hour crafting a long, detailed email to me explaining why I was neither a gifted writer nor equipped to be writing on special needs.  That was the first day (of many to come) that I seriously considered walking away from writing on this important topic.  It still stings just to think about that editor’s email to me.

Now after writing almost exclusively on this subject for four years, I’m pretty confident in my writing on disability and special needs inclusion.  I have immersed myself in the culture and have done so many special needs related interviews that it’s crazy (probably in the high hundreds?)  And I still get it wrong. And part of the reason I get it wrong is because there isn’t perfect agreement for what is “right”.  Do you describe a boy as an “autistic child”? Do you refer to him as a “child with autism”?  Or should you go further and say “the child has autism as an attribute”?   Those are just examples of the choices a writer has to make when describing a little boy who exhibits behaviors that a church volunteer might not understand without knowing has been diagnosed with autism.  And for every article or post I write, there are a dozen (or more) other choices like this example.

While people-first is technically correct, it is an editor’s nemesis.  I can’t tell you the number of times I’ve submitted an article to a mainstream publication and had a well-meaning editor change my thoughtfully crafted descriptors in order to improve word flow and word count.  I’ve gotten to the place I now require any publication that I write for to allow me final review of their edits.  Why?  Because I hear about it when it is wrong.  When the 500 word or 1500 word article gets published, when the Facebook post goes up, or when the tweet goes live…if there is a mistake related to special needs vernacular, the underlying message is missed by at least a few readers and the negative feedback starts.

Let me be honest for a minute…the special needs crowd is a tough one.  And it’s a vocal bunch.  These folks have to be assertive or they’d never get anywhere.  But sometimes that assertiveness is intimidating to people like me.  After writing on this topic for four years I can usually predict when I’ll receive a public or private rebuke about a mistake or even bigger problem with my writing.  And because I’m a people-pleaser, I spend probably too much time trying to avoid that feedback before I ever hit the “publish” or “send” button.  But I still get it wrong…and I still hear about it.  I’m learning (slowly) to develop thicker skin.  And I’m at a place now that I have enough confidence in what I’m doing to know that 99% of the time my mistake or misstatement isn’t catastrophic.  But today I decided to write about this because there is a tremendous parallel for churches.

Churches are in desperate need of staff and lay people who will rise up and lead a special needs ministry.  The people who have the most physical and emotional availability are nearly always people like me…parents without children impacted by disability.  I love it when parents of special needs kids can and want to serve in church’s ministry.  But let’s face it – if you have a child with a notable disability you probably don’t have oodles of free time to plan and coordinate a ministry!  Only recently has God opened some doors of opportunity and provided me any level of income for my work.  And the same is true for many special needs ministry leaders.  The people called into service are good hearted folks who rarely receive fair compensation for their contribution.  Remember, they have utility bills too.  So it can be incredibly intimidating and discouraging when as soon as they start trying to serve families affected by special needs, they start receiving feedback on what they are doing wrong.

If you are a parent of a child with special needs either participating in a church or seeking inclusion in a church:

  • Always begin a conversation with a church leader conveying appreciation for their personal investment in the ministry.  Specific praise is more meaningful than general flattery.
  • When the ministry leader gets it wrong, ask yourself, “Does this really matter?” or “Does this mistake reflect a heart-issue?”  If correction is warranted, be sure to share something the leader is doing right before pointing out what’s wrong.
  • If the ministry leader is volunteer or under paid, be especially sensitive.  Most special needs ministry leaders are paid less than the wage of a grocery store cashier when you consider all the hours they invest in the ministry.  So it can be tempting for them to throw up their hands when the criticism starts and opt to pursue a job that requires fewer hours, less emotional energy and provides better financially.

Okay.  Hear my heart today.  This post will probably garner more negative feedback than any other I have published before today on this blog.  If you are a parent of a child with special needs and you found your heart rate climbing as you read this post…take a breath.  I can almost hear the thoughts “You don’t understand our life and the stress we are under”.  True.  True.  But I would argue that you need folks like me to be your cheerleader and even your conduit where you can’t.  So the next time a special needs ministry leader (me included) makes a mistake, look at the bigger body of work.  We’re on your side.  I promise.

~ Amy Fenton Lee

28 Comments
  1. Amy, you do a wonderful job! I am a special education teacher and have to sometimes correct myself when writing, making sure I put the child first as a child with autism ect. and not an autistic child. However as a special educator and a mother of a child with special needs what is politically correct isn’t what is important, what is important is getting our children the things they deserve such as respect,acceptance, needed services in school, medical services, and spiritual services such as ministries for individuals with special needs.
    I applaud how you have put your heart and soul into helping our children, especially in the spiritual area where there is such a shortage of places of worship that have programs that include our children.
    Our families need caring people like you to be involved in helping those with special needs. All too often those that don’t have a child with special needs just close their eyes to this community. You have done the opposite. You followed God’s calling and are making a positive difference for our families. I along with no doubt many others thank you from the bottom of our hearts!🙂

  2. I hope this post doesn’t garner too many negative replies, if any at all. I appreciate your honesty, humility, and willingness to share you heart.

    Thanks for persevering over the years! You’ve blessed so many families & churches!

  3. Thank you so much for this article. As a special-needs parent I admit there are some of us who very defensive and quick to jump on perceived insults, or insenstivities. I feel as the years have gone by, my son is now 17, that I have become more mellow. I recognize intent of the heart is more important than the phrasing or words that are used. In the first years we parents feel so helpless and not “in control” that maybe we over-react because it is something tangible that we can do. This may not even make any sense the way I am wording this, because it is difficult to explain. Just know that this mom will make a concerted effort to continue to be mindful of the intent, not the words.

  4. Shannon permalink

    Amy, I love this post. I know, too, that you may get some emails or criticism for posting this, but none of it is deserved. I know – even as a special educator – that I felt inept in leading special needs ministry at first because I didn’t have a child with special needs. Even though I now do -though we’re only six weeks in to being Zoe’s parents – I still get it wrong at times. Which makes me so very thankful for grace extended from God and others!

    Yes, the special needs community (and, I would add, the adoption community) can be quite picky about wording and practice, but when writers and church workers approach the issue with the humility and gentleness, as you do here, it helps everyone.

  5. I am an editor for a Christian trade publishing company and the mother of a remarkable boy on the autism spectrum. I have read your site often, and I understand the grammatical gymnastics it takes to try to convey a point and share useful information on the subject of special needs while keeping word-count in check, not to mention meeting intense deadlines. Although I try to use as much inclusive and sensitive language as possible, I also note that the repetitive occurrence of one certain “acceptable” wording can cause a reader to lose focus from what truly matters–the spirit of the article, and the overarching message.

    In spite of the many challenges you have certainly faced, I for one am very grateful that you didn’t abandon your God-given calling to this beautiful group of people. We are not the Body without them. May we all show grace to each other as we continue to grow and understand…I hope the world will soon see a book from you.

    Continued blessings to you and your ministry.

  6. I think this is a great article and I am glad you addressed it. Within the autism parent community, you definitely have a community of fighters. We have to fight not only for services for our kids, but also we honestly have to fight for our kids right to even live on this planet. It seems like many places we go, our kids are looked upon like they are not welcome. And then, if that is not bad enough, there is the division in the autism community itself….are you pro-vaccine or anti? Diet or no? ABA therapy or Floortime or (insert your favorite therapy here)? It is no wonder that so many of us walk around this world with a fight face on…our lives are a constant battle. It is so important that we take a step back and remember that not everyone is out to make life harder for us. Some people, like you, Amy, are here because you genuinely want to help. We need to be ever-mindful of that, and make sure that before we go on the offensive, we need to look in the mirror and make sure it’s not that chip sitting there on our shoulder that is causing us to lose our balance. If we aren’t careful, that chip is going to cost us some amazing people in our lives…and our kids will be the ones to pay the price. We need to remember to be generous with our GRACE…the same way Christ has extended His grace to US. THANK YOU for that reminder.

  7. I am an autism mother and I also teach my son for Sunday School … our church’s special needs ministry at this point, is still all my responsibility. I think this is a wonderful, heart-felt post and personally, I am extremely thankful for people like you who love our children.

  8. As a mom of three type 1 diabetics and a little boy who has Down syndrome, autism and severe apraxia–I so appreciate what you wrote. Other special needs parents have caused the worst hurt for me personally! “Wounded people wound others.” So, being a part of the special needs community has opened me up to attack from people whose paths I might not cross except that we have special needs children in common. I think many special needs parents are in survival mode. And the majority do not have a strong faith in God and are not believers in Christ. So, they are really frail and frayed emotionally. Even with Jesus, I have days that I feel like I cannot make it and my angst can get projected on someone! I also can get insulted by stupid comments and be too sensitive. Our children’s ministry leader approached me last Sunday about how to better help my little boy at church. I really appreciated her heart. And I am trying to be careful to show appreciation for all the church has had to put up with while also sharing what we need and what my son needs. I so agree with you that these people are volunteering or getting paid a pittance and they are not therapists. They do not know everything or the special needs lingo! Yet, I have learned as long as there is “love” it covers over a multitude of offenses. We so need to be careful to love others too. Especially those who are trying to help. Thanks for all you do!

  9. Great article, Amy! From the church and children’s ministry perspective, we need you! We need your voice leading the church to understand the culture and showing us best how to love the children, parents and the whole family in the positive times and the times that we all get it wrong.
    Thanks for sharing. I would have never known this was even something that was a struggle, now I know better how to pray for you and those on the frontline of special needs ministry.
    Keep focused on your mission, girl!

  10. Debbie Clark permalink

    Amy, God bless you for joining the ministry in the fight for inclusion!!!  Usually, only people whose lives have been personally affected by disabilities are involved in this field.  Thank you so much.  You are a really special child of God.

    Debbie Clark (mom of 2 sons on the spectrum)

    ________________________________

  11. Amy, I am the Group Leader for the Special Needs Ministry at my Church and have been from start up about 5 years ago. It is a volunteer ministry. Even though I do work in the special needs field, putting together all of the varied aspects of this ministry was daunting at first, and could have been overwhelming…..until eventually, I found your blog. You gave me invaluable advice, gleaned from experience (yours and others), on any and every issue the ministry was facing! You have helped us write policy and procedure, train ministry workers, draft registration forms, understand how to speak with parents, and much, more! With your help, and the help of another gifted Ministry Leader, Joel Wallace, we have been successfully able to minister to several children on the autism spectrum at our Church. Do not be discouraged, you have a definite call, and have helped many more than you know! The Church community needs you!

  12. Amy, our church has a wonderful ministry to children with special needs. We are becoming an inclusive church…many thanks to you! I’ve gleaned so much from the information you share and the resources you provide. God has used your passion for special needs inclusion (which He gave you) to fuel this passion in my heart. You have shared remarkable insights and provided an abundance of resources, you are mentoring many of us in the trenches. The beginning stages of meeting this need in our church were very challenging, to be honest, and often times I questioned if it was worth the extra effort and time. Praise God, we didn’t stop jumping hurdles, finding solutions and tweaking the process of assimilation. We continually experience God work in the lives of our volunteers, families and especially in the lives of children with special needs. One testimony (there are many) of God’s grace took place when a child was in crisis mode. The crisis stirred the emotions of the other children in the class, as well as numerous volunteers, plus the parents of the child were doing their best to console and help their child. I sensed everyone’s helplessness and tension mounting. I gathered the volunteers together and even some of the children in the class and we started praying for this precious child and parents. We were not helpless. We saw a remarkable answer to prayer! And the journey of experiencing God work continues. Yes, it is worth the effort! Ministry to children is a beautiful thing..ALL children! Thank you, friend.

  13. Amy I love this post so so much. SO much. I adore you and thank you so much for not giving up. We ARE a tough bunch to work with- you are so right. And even if we have good reason to be that we I know we have to give grace to those who genuinely want to support us- whether they do so with the “right” vernacular or not🙂

    Thanks again for doing what you do xox

  14. Amy, what an amazing post! Thank you so much for sharing your heart and bringing up this topic. In working at Joni and Friends, I have found that this “fear of getting it wrong” is what hinders most churches from jumping in and serving. We all need to be willing to take the risk, make mistakes but do everything we can to serve people as Christ did.

    Thank you for serving and loving families – you are making a difference and encouraging the rest of us along the way!

    Mike

  15. WONDERFUL POST my friend! And I have to say, as a mother of children with special needs and as a writer, I ALWAYS appreciate your thoughtful, attentive care.

    And I think this post is so needed. We as parents need to realize that volunteers are servants.

    We all are in this together. Will be sharing this. xo

  16. Thank you so very much for this! It is impossible to please everyone, and big hearts have more opportunity to get bashed. A very timely, needed post, my dear friend.

  17. A great book called “Dancing with Disabilities” by Brett Webb Mitchell. It is about families with a child with a disability and their struggles to find or STAY in a faith community. Amy be kind to yourself you can not e thanked enough for what you do.

  18. I don’t know of a single church that has a disability ministry. I am in Australia, and come from New Zealand. I blogged about this a bit last year. http://www.just-juniors.blogspot.com/an-open-letter-to-the-church.
    Since then, ouastor and his wife have had a baby with special needs. The church has rallied around them with love and support, which is great. But, our 4 year old with Down Syndrome, a hearing loss, and breathing issues, is still overlooked. Looks like you need to be on the ‘pastor pedestal’ to get any help or encouragement. Sorry, but it has left me with a bitter taste in my mouth. I have stopped going to church and to our ladies prayer group. It isn’t that they cannot see a need. They do for the pastors. It is that they only see that need in the important people. Not the general congregation.

  19. Carolyn –

    I will make a point to specifically pray for you today. May God bless you with people to come around you, encourage you and help you be the real missionary to your child. And may God bless you with opportunities to grow spiritually yourself (as I know this is harder when you parent a high-demand child). Obviously I don’t know the specific needs of your child but it is common for preschoolers to actually be included in their typical environment and if needed, have an individual buddy assigned to them. Some special needs ministries don’t really even “start” until children are age four or older because so often special accommodation doesn’t become as much of a need until the children become elementary school age and older.

    This blog actually has a decent number of Australian readers and several have reached out to me for help with their church ministries. David Wakerly is a well known children’s ministry leader in Australia (at Hillsong) and he has even blogged on the subject of special needs inclusion in the church. If you live near a Hillsong United Church or Planet Shakers, you might contact those churches. They might even know of other churches closer to you that have a special needs ministry.

    I would encourage you to seek a meeting with your church’s children’s pastor or preschool pastor. Pray for God to give you grace and gentleness (neither are things I’m’ naturally gifted with!) and present some specific and constructive requests for how the preschool ministry can successfully accommodate your child. ~ Amy

  20. x77dude permalink

    Thank you for your words, and the spirit with which you convey them. Personally, I believe that each and every one of us is “special”–and I, for one, have “special needs.” My needs might not be as visible as your child’s–a downtrodden heart broken by perfectionistic and judgmental “saints” is difficult to discern, after all. The Good News is that God loves each and every one of us–from children to adults–with varying abilities, disabilities, simple needs, “special” needs. We’re ALL loved. Nobody should be made to feel unloved or unwanted–especially in the church. God bless you!

  21. Hi Amy,
    Wonderful post! I so appreciate your honest and balanced take on this tough topic. Brenda

  22. Great post Amy. I can’t tell you the number of times I have been corrected because I wasn’t using the current terminology, although I make it a practice to use people first language. We wouldn’t be serving in this capacity if we didn’t love what we are doing. This is hoping that everyone sees our hearts and doesn’t always judges us for our words. It is tiring to overthink our words when all we are doing is trying to serve as His heart and hands.

  23. Thank you so much for this breath of fresh air. I am just trying to get a ministry at our church off the ground. I have my degree in special education, but am now a stay-at-home mother. Working with children with special needs has always been my passion. This past week has been very discouraging, and I have wondered if all this time and effort (gladly without pay) is worth it. Roadblocks seem to be popping up in the most unlikely places. I am praying for grace and forgiveness as I attempt to be an advocate for families with child’s with special needs.

  24. Out of the park once again!!

  25. Amy Daniels permalink

    Amy,

    I read your Inclusive Church emails and love them and share them!
    I just have to say this one is my favorite…just sayin’…!

    Thank you for all you do!

    ps used your DVD to help our SuperKids volunteers to be better caregivers

    Pss oh and if you happen to be in Scottsdale on November 2nd we’re having our biggest event…details later!

    Amy Daniels
    Special Ministries
    http://www.sbcsm.com

  26. Cindy permalink

    I am a mother to four children, three who have special needs (Autism, Asperger’s & ADHD). I am also a writer and have taken up the role of special needs coordinator at our church…so when I say I understand where you’re coming from, believe me😉
    Special needs parents, as I’m sure you know, come to the battlefield already bruised. we are defensive by nature and it takes time for us to warm up to the most well-intentioned people. being on the other side of the fence, with the ministry, it seems like the easiest way to break that barrier down is just by acknowledging their hardship. there’s not much we can do to “fix” things, but recognizing their plight goes a long way. once they know you’re on their side, the defenses go down a little. Then they can see to the heart. As for me, I can smell right off a person’s attitudes towards special needs kids and if their intentions are pure, they can use any person language they want; I know they mean well. it’s fine to advocate but don’t nit pick those who are whole-heartedly trying to do the right thing.
    thank you so much for all you do. where you see gaps that leave you feeling like you’re going to get it wrong, I see God working a miracle for special needs families. SOOOO often, the parents of those with special needs HAVE to step up to the plate for the good of their own and then end up taking on other families. it is refreshing and elating to see someone so “typical” take up for us🙂. thank you.
    I have your book and want the DVD soon, as I am trying to incorporate as much of your getting started stuff as possible in our church. it has been three years and I still don’t feel like we’re where we need to be, but God is faithful.
    on a side note, as much as I agree with it as an advocate, yes, person first language drives me crazy as a writer😉
    Blessings and THANK YOU for all you do!

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