Tuesday, July 24, 2012

An Inconvenient Life



I read that if people with special needs were classified as a race, they would together be the largest unreached peoples in the world.  In my average size city there are at least 6 elementary schools, 3 middle schools and 3 high schools. Each of those public schools have a Life Skills class with approximately 10 kids full-time. That means that at a minimum there are 120 families with special needs and realistically twice that many families if all the kids on IEP’s, at all schools were counted. A low estimate is there are around 200 hundred families with no church loving them or supporting them emotionally…but there are over 81 churches listed in the public directory. Yet, sadly, not one of them is making an effort to reach this “people group”. These local churches are overlooking an enormous market right out their front window: families with special needs.

I know this for a fact because we have contacted many of them and specifically attended 4 of them with the hope they were interested in starting a disability outreach. The disappointment for us, is that they all talked about it from their mission statements and prayers and speeches: they want to embrace diversity and reach all people and be missionaries… yet in their efforts to reach the world they’ve stumbled over us at their doorstep and kept right on walking.

We have been an inconvenience to many churches; they honestly don’t know what to do with families like mine.

Being an inconvenience is something we have experienced in many places such as restaurants, social outings, birthday parties, classrooms, shops… but the church - - really, it just baffles my mind.  This is supposed to be a place of refuge, yet it is where we have experienced our deepest hurts. Over the years there have been two churches which we attended regularly but were eventually told, “unless you sit with your son in sunday school, he cannot come back.” Tears of disappointment mingle with righteous indignation as those words pierce my deepest soul. As acid poured on an open wound, the rawest pain was at both of those churches we counted the pastor and his wife as truly some of our dearest friends. And while it was not the pastor that asked us to leave, he did not make any effort to begin a disability ministry or intercede on our behalf. Pain does not go much deeper as we dishearteningly left those churches.

Hurt swells and rises in my throat when I know that I am not alone in my experience. If I dare to raise the subject to another family with special needs, I am met with tears of empathy. Why? Why must those who are different be an inconvenience?  Is not the church the safe haven, the hospital for the weak?

On Sunday mornings I wake up with dread. Should I take my child to Sunday School? Should I leave him with me in the service? Should we just stay home? Sunday mornings are an enormous hassle; it’s often not worth the frustration. Is it really worth the effort to go church, to sit with our bodies tense, our minds not relaxed for a nanosecond…waiting to hear the squeal of our child from down the hallway…knowing it is a matter of minutes until the flash of the beeper lights red…  cringing as our number is broadcast on the call box… getting an evil eye from those around us…letting out a deep sigh of discouragement as once again we are called upon to go retrieve our child.

My child needs care and attention 24/7. Twenty four hours a day, seven days a week I am called by God to care for and love my child and I do so willingly and without reserve. By the dawn of Sunday morning my soul is craving after God, my emotions are frazzled, I am on the verge of tears, my body is weary. I want to sit in a pew for 90 minutes and breathe in the sweet peace of the Holy Spirit reviving my parched soul. I want my spirit and heart encouraged and refreshed for a week ahead. I want to know that for 90 minutes I can sit calmly and soak in the truth of God, my mind at peace knowing my child is safe and loved in the same building. Why does the church not feel the cry of  families such as mine?

It grieves me deeply that as I interact with families of special needs all across the United States and beyond, I hear firsthand how many of them are angry at the church, how many of them have been rejected by the church, how many of them have been asked to leave a service. It is just so wrong on every level! Oh how the heart of God must be breaking for His precious children who are desperately craving connection, but are being brushed aside.

Clearly scripture says “Pure and undefiled religion before our God and Father is this: to look after orphans and widows in their distress”, and while the “disabled” are not specific in that clause, the heart of Jesus was indeed drawn towards this people group.  Read in the four gospels of Matthew, Mark, Luke and John how often Jesus healed one with seizures, one possessed in the mind, another broken in body or those overcome by physical disorder.  Where, I humbly ask is the heart of Jesus via the church for my child, for my family?

Oh Church, take off your “WWJD” bracelets and charms and look around you! Look out your rose colored windows and allow your eyes to linger on the hundreds of hurting families right in your neighborhood. Moms, dads, caregivers… craving a simple 90 minutes of peace and reflection and spiritual renewal. 

I promise the local church, if they would open their doors, their hearts, their arms to those with special needs, they would not even need pursue them - - families would flock to your church! Then those who know nothing of the saving grace of God, would see Him alive via the action of the church, and they would be unable to deny His love. And those who already know the One who loves without boundaries, would be encouraged and renewed each week!

Whether you read this as a family seeking 90 minutes of peace, or as a church member needing to offer hope… my prayer is that in my child’s lifetime this inconvenience will soon end and never again will a family leave a church feeling more discouraged than when they entered.

17 comments:

  1. This is why we do what we do...so sorry to hear about your experience. Please let our crew know if we can help.

    http://www.keyministry.org/

    https://www.facebook.com/pages/Key-Ministry/116940088329098

    http://katiewetherbee.wordpress.com/

    http://drgrcevich.wordpress.com/

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    1. Thankful for your outreach at Key Ministry. You have great resources. Now if churches were as interested in your material as I am, that would be great! Love the Inclusion Fusion DVD and hoping our new church will be interested too.

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  2. Our church, although full of kind and loving teachers, is also unable to accommodate our son with Special Needs. I don't blame them. He is disruptive to the lesson. He hits. He makes it hard for the other kids to learn. So I struck a deal with a mother of another child with Special Needs. We have our sons in an empty class and take turns teaching. She has them first service and I have them second. We bring a brunch, let them play and teach them lessons tailored to their wiggliness! Our sons have a friend and we each get to attend a church service...just wanted to share.
    Hugs,
    Merilee

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    1. Thanks Merilee, great idea for a church with 2 services.

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  3. I know that you don't know me but this sounds like a lot of what I hear from people about many aspects of the church today. I believe that the church has lost it's purpose and instead of serving the hurting and needy they cater to their own desires and comforts. The churches today are nothing like the churches that the apostles started 2000 years ago.

    The church in America needs to wake up before its too late. They need to put down their lattes and pick up their crosses. You are correct that if the church would open their doors (and arms) and simply show love to the world outside, so many would come to know God.

    I could go on, in fact I already did. This idea that the church has missed the mark troubled me so much that I wrote a book on it. You might be interested: www.losttheplotbook.com

    I hope that you find a church that accepts you. You may have better luck with a smaller congregation, they tend to not be bogged down with "procedures" and might be able to adapt to the needs of your family better.

    -Paul

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  4. I get it. I wish it would change too. We were at a church and the pastor stop service and asked a mother with a crying baby to leave. I never went back.

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    1. Wish there was a "cry room" at every church. We found that is helpful for my son to sit in when he can't go to sunday school.

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  5. You know how there's "sensory saturday" at the movies? they keep the volume down, people understand that come patrons won't be staying in their seats, etc... our right to life group in our (Catholic) church wants to start "sensory special needs sunday" with a Mass mid afternoon Sunday for families who were otherwise doing the divide and conquer thing, or just skipping entirely. Our pastor is worried, though, that if we tried it nobody would come :-)

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    1. Now that is a great idea! Tell your pastor we could fill up the service faster than he can open it.

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  6. I am a mother of a child with special needs as well and completely understand how you feel. We were lucky that a SpEd teacher volunteered to be our son's helper at church when he was just 3 years old and stayed with him for the Sunday School hours, helping the teachers and church leaders understand how to help him, and teaching our son the routine of church. He was one of the first severely disabled kids they had. Now he's 13 and attends church very well - but his teachers still need help understanding how to bring his attention to the lesson, etc.

    I've learned so much over the years and have presented at many parent support groups and churches to help them as well. Giving parents the opportunity to refill their souls helps them have the strength to face the upcoming week. We need that so very much. But our children also need the opportunity to learn the gospel as well.

    After helping the special needs community for several years, I was asked to write a book. My co-author has a Master's in Special Education. The book covers everything from teaching tips, sensory issues, positive behavior supports, creating a positive dialogue between parents & church leaders/teachers, and so much more. It's for any church denomination. It was written for the Christian community (so has Bible quotes, etc) but any religious community can use the concepts for helping individuals with special needs in their congregations. There are sections for young children, teen, and adults. It's very comprehensive. You can find the book on Amazon.com, Barnes & Noble, and can be ordered from any book store. It's titled (dis)Abilities and the Gospel by Danyelle Ferguson & Lynn Parsons, M.S.

    I hope you will continue to advocate for you and other families in your area. You all deserve a place to worship where you and your family are welcomed, loved, and nourished in the gospel. Please let me know if I can help in any way. God bless.

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    1. Thanks Danyelle. I will certainly look for your book on Amazon. My biggest desire is that my child be given the opportunity to experience "church". What has happened is that he's been put in a room with a movie to keep him quiet or walked around on a nature walk. On one hand, I got to have a quiet church service, yet it did not give him any church. Guess I'm just longing for the best of both for him and me.

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  7. Thank you so much for this! I have felt the same as you have many times. My son is 5 and ASD and although he is high functioning he still needs help staying on task during Sunday school. Our church has a disabilities ministry but the need for helpers is over whelming. So many more families have come to our church since we started using a "buddy" for him. I almost feel guilty asking for a "buddy more than once a month because the need is so great. Thank you again and God Bless you!!!

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    1. You are welcome Andrea. I'm thankful to be able to connect with other parents like you. It seems churches with 2 services would be able to find more willing volunteers since no one would have to miss a service. I'm thankful your church is giving hope to families!

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  8. As a pastor and a father to a son with FASD, I see both sides of this. I sympathize with you and admire you for your parental work of love, understanding the exasperation of caring for your son. I also know the church is not really that different than a school, restaurant or any place. It is just a gathering of sinners who are trying to do what God has asked of them. Sometimes, they will get it right and sometimes they will get it wrong and people will be hurt by it. Sounds like you have experienced that. While a church would love to accommodate all children, there does come a time when the parent has to be brought in to intervene. It is a balance that is difficult to find, and some will try harder to find it, but as parents of these kids, we have to know and accept that our experience of church, school, restaurants, etc., will forever be different not because of those institutions, but because of the disability of our children. It is, as your title so aptly says, an inconvenient life. But, as you also say, it is a life of worthy ministry to a child who has special needs through no fault of his own.

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    1. You are correct, it is a balancing act between parents and church members. I by no means want to "dump" my child on the church, but I do know that I need a break from being my childs caretaker. Thank you for your wise words. You are the first pastor/parent of a child with FASD I've ever "met"!

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    2. Dear joyfulltiredmom, Have you considered doing what many believers have done and that is to explore the possibility that "going to church" every "Sunday", is not necessarily a commandment or something that is not "required" of us? There are many many ways to fellowship outside of what we have been traditionally taught along with a huge serving of guilt if we don't attend regular Institutional Church (IC) gatherings. YOU are the church and everything you need has been written on your heart and you are free to fellowship in any way that you want, any day of the week, in any way. Ghandi said "some people are so hungry that sometimes a piece of bread is the only God they can see". The church is filled with things telling people what the bread tastes like, looks like and feels like, but it's time to start handing out the bread. There's a short book called "So you don't want to go to church anymore" which you can read for free at this link (http://www.jakecolsen.com/contents.html). It explores these things in a story form and is very freeing. It doesn't say "don't go to Church". It says....consider these other things. Maybe you and other families with challenging children can start your own ministry or just a group to meet and fellowship on your own terms (and I'm sure there would be plenty of folks interested in joining you who are also uncomfortable with what the IC offers or doesn't offer).

      There is no commandment in the New Covenant that requires us to attend a weekly meeting anywhere for any reason. Worship is a 24/7 thing and anytime you are kind or helpful you are "loving" someone, which is the only command we actually were given in the NC.

      Bottom line, to answer your question, yess...sometimes it's not worth the "effort" to "do" the IC thing. We are FREE to explore what the Spirit lays on our hearts. :)

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