Sunday, August 22, 2010

Inside those four walls

We used to go to church on a regular basis. Sunday morning, Sunday night, and Wednesday night. We were involved, and felt like we had extended family.
After Alex was born his care was so involved, and he could not be around other snotty nosed children that we were no longer were able to go. Adam and I have not been to church in 3 years at the end of this month. To be honest, it feels normal not to go.
Of course 3 and a half years ago, I never would have thought that feeling normal at home on a Sunday morning would ever feel normal.
Churches have programs for the deaf, the blind, for teens, college students and even children across many oceans.
Why is it that those who are intellectually different, and their families aren't given the same opportunity to go to church? Of course they are welcome, but with some of the medical issues be it a feeding tube, oxygen, or just being medically fragile makes going to church impossible, because there is no program in place to make going easy.

The majority of families with intellectually different kids, and medically fragile children just don't go to church because there is no program in place to make the transition easy.
What do you do?
And the real question is, what does the church do to get your entire family inside those 4 walls?

Discuss........

27 comments:

Joel Spencer said...

The way I see it, after my 30+ years of regular church attendance and even being on staff at two different churches for a season, is this: programs and activities aren't the answer. The average "church" is ill-prepared to accommodate those who do not fit within the cookie-cutter mold because it is really nothing more than a club.

Club members of any kind must meet requirements. In the case of "church attendance", you must embrace the doctrines of the denomination, follow the guidelines (sit, stand, listen, be quiet, etc.) and do what you're told, when you're told to do it. Orders of service demand your compliance.

In your case, I would assume that until your issue was brought before them, it would likely be innocently overlooked. Even if this were addressed, it would only assist in even more people being joined with institutionalized Christianity that only reproduces zombified clergy-followers who have no spiritual leg to stand on their own.

Truly biblical Christians were never meant to idly sit around and do nothing in gatherings. The widely embraced orders of church gatherings simply don't line up with Scripture in any capacity whatsoever. My wife and I have been meeting in homes for several years now and have seen first-hand how small, intimate groups embrace each others differences and speak honestly with one another, without all of the politics, programs and rituals of religion that have ruined the gathering of the Body of Christ.

So I'd say, if you desire gathering with others and being the Church instead of looking to attend It, start something in your own home. Sadly, if you're waiting for mainstream Christianity to meet your needs, you will forever be sorely disappointed at best, if not pushed out, ignored and scorned.

Good questions that need addressed Jessica.

Kelly said...

This very issue came up with us at church today. The church nursery has been a great setting for AnnaKate but she is getting older and should start Sunday School. We can't just "throw" her into her normal age group. I would like to see a special needs ministry started at out church. One that pairs willing adults or teens with a child and shadow them in their classes.
I know if I want this then I need to be the one to start it.
Could you open the dialogue between you and your church to see if they are willing to start something that would benefit you and other special needs families?

Kelly

Anonymous said...

Hi Jess-
You probably don't know this story, but when I was little, my father (a special ed professor), had a Sunday school class for kids with developmental disabilities. I was pretty little so I don't know the circumstances around how and why it got started or what age the kids were. I do know that one of the kids ended up running trough the church cussing. The head minister told my father that, "those kids" didn't need Sunday school or to be at church. My father got so angry with the minister and and the church in general that he left and I don't ever remember him going back.

I guess I am telling you this story to say that I would talk with your minister and see how open he or she is to setting up some sort of program to support Alex and other kids with different needs. If the support doesn't come from the head of the church, it would be a long, hard road.

Thinking of you and love you,
-Julie

Anonymous said...

Though I no longer attend church for completely different reasons. I'm no longer a Christian. I really like what Joel said here. I think your best bet if you desire meeting with others and reading the Bible and discussing topics of God and faith is to meet at your home or organize something yourself. Its a waste of time to wait around for a church to meet your special needs, especially a Baptist church, and especially a specific Baptist church I'm thinking of in Jacksonville. Though it sounds like you are enjoying your Sundays with your family at home. Keep it that way then :) Take care. Wish you and your entire family well, Jess!

Anonymous said...

We have to be part of the solution rather than being critical of others who don't know where to begin to help us. It is not that people don't want to have something in place but they don't even know where to start. If we are not happy with the way things are going we need to come up with an idea and be a part of it to make it work. It is hard work and you will find that people have willing hearts but are frustrated because they want to help but don't know how. Help the church understand and to see that there are some needs not being fulfilled. We should not be critical of those who just don't understand - we didn't understand either until we were faced with this challenge. Christians aren't perfect and they are all struggling with something in their lives whether they show it or not. Be willing to reach out to the church and teach them and love them where they are. That is what we all need and want is to be loved and understood right where we are.

Jessica mommy to Alex/ RTS said...

I would like to address the last comment....#5
The church doesnt ask the teens, or the hungry children to be a part of the solution. Families with medically fragile or intellectually different children are booked solid with doctor appt, therapys, advocating for school. The last place they should have to "fight" for a solution is at church. THis should be a place of rest, and comfort. Just as soon as that mother gets out of the hospital with her child thenext thing on her mind should be what she needs to do to get her child the right care in church?
I would also like to add that my blog post was in no way critical of the church. I was stating a fact, a problem that is all across our country in churches everywhere.

Michelle said...

of course, I just typed out a long response and it was deleted! AHH! LOL I'll reply again later when I have the chance!

Chris and Emily said...

Hey Jess - I actually coordinate the special needs ministry at our church - and did so even before Cohen was born - we started it about 6 years ago when we realized that there were a few families in our church unable to worship together because of the needs of their child. We have one- on-one shadows with our kids that are a part of our special need ministry that need it - and cover a wide range of needs from medical(Cohen was originally kept in his own room with his own teacher when we had to keep him away from other germs) to just physical needs, to intellectual differences. It's all volunteer ran. You might be surprised to find a church in your area that does do something.....but it certainly isn't the "norm." I know that what our church does doesn't actually help you get to your church...but it might be encouraging to know that some churches are doing something. and if you or someone in your church wanted to get something started...I'd be glad to be a resource or help in any way. Our Children pastor - who really had little experience with kids with special needs and wasn't even on staff when we started the ministry....has written an incredible number of posts on our children ministry blog about our church and our take on serving kids with special needs. It has certainly been a blessing to us and many other families to have our church come along side us so strongly...it might be worth a look...http://childrenatgrace.blogspot.com/search/label/special%20needs.

Finding Normal said...

Our church hasn't ever offered anything. We started taking Addi when she was teeny tiny and on oxygen. That got us lots of stares! We still try to go every Sunday. I don't know what we'll do when she's old enough for first communion. I did see something in the bulletin last week asking for a special sponsor for a child who is preparing for first communion and has special needs, so I guess we'll cross that bridge when we come to it.
What do you think they need so you could attend? Alex goes every where else with you, now, right? He's not completely medically fragile, although he seems like Addison...when they get sick, it's fast and bad.
I don't think you're going to find a program. I think you just need to try it one Sunday morning. You might find that you are missing an opportunity for a lot more people to meet/see/experience the joy of Alex.

Finding Normal said...

I guess I should also say that we've always taken the approach that our kids are always with us during mass. We have never sent either of them out to the nursery or the preschool program that goes on during mass. We have always wanted them to experience the whole mass, from start to finish. I probably don't get as much out of it when I'm also managing them, but church is about family, to us.

Jessica mommy to Alex/ RTS said...

Thanks Debbie and EMily. Debbi-Alex would be very disruptive during the service, in a sweet way of course, while he doesnt say a word, he is very vocal and loud. He also would have trouble sitting the entire time and not throwing a fit about it.
Emily-there is not one church in our town that has a program like yours. I remember you talking about it when we met. I would love this for Alex. After learning about hope school and your church, maybe we should move to you!!!

KrazyMom said...

We are very blessed to have the support that we do at our church. Our 2yr old is medically fragile and they have a special care room with staff scheduled for one on one cuddling with each special needs child. Knowing this, and the fact that we are given a pager to take into the service, allows my husband and I to attend the service with piece of mind. I was even stopped in the hall at church this morning and asked by the Christian Education Director if we are happy with our little ones care and if there is anything else they could do to be accomodating! We went from parents of one to parents of five overnight, through adoption. I feel so blessed to still be able to attend our home church even though things are a bit hectic now. I will keep you in my prayers for finding a church/ or new opportunities at your old church so that you can attend once again all while knowing Alex is secure as well.

Michelle said...

I have a friend who is so thankful our church (quite a big one in Houston) has a program called Smile Makers where children with special needs can attend and their parents can attend church and class. For the ones who can, there is a helper who takes the child into the regular class for part of the singing and playtime. The same goes for when we have VBS. Wonderful outreach! I hope you can find somewhere that will meet your needs in this way! :)

Cindy said...

For us, Natalie came to church with us whenever she was healthy. After she was sitting up (about age 1) we started putting her in the nursery with typical kids. I know they would have let her stay in the nursery past the 4-year cut off, but Tom and I decided to start working with her when she was 3 to have her sit through the service.

It's not something that happens overnight...it's working on it every week and making small strides (our kids always make small strides!) Sometimes two steps forward and one step back, but she has learned to sit and read a book in church. She talks, and we whisper "whisper, Natalie". And if she's talking too much, we take her out of the service. But it's wonderful that she participates as much as she can: singing the songs she knows (and the ones she doesn't know!), reciting the Lord's Prayer and the Gloria Patri, putting a dollar in the offering plate.

It would be nice to have a program at church like what others have described, but since we're hoping that Natalie will eventually be in an integrated classroom, we're working for her to be integrated as much as possible in every area of her life, including church.

I encourage you to attend church! Alex will be going to school soon, and he would probably enjoy the church nursery. And as you are more comfortable in church again, you can work to integrate Alex into the service, bit by bit.

And what I'm trying to say is that worshiping God with a church family of believers is important enough to make it happen, even if it isn't easy. It gets easier with time, but it's worth it.

Ask not what your church can do for you, but what you can do for your church. Your church family will learn a lot from you by seeing you and your family in action. Your example will show them that they can and should respect differently abled kids and adults. But if they don't see Alex, they won't ever learn. They will just go along, never thinking about the differently abled world out there.

I encourage you to not sit and wait for someone to reach out (you've been waiting, and no one has made the move, right?) You make the move...you get to take the credit for the success that ensues!

Hugs!

Groceries said...

So, I started looking into this because this isn't something I have ever thought about and because I was curious if something existed. And I guess you wouldn't really think about these things unless you had a child or a friend who needed it. I talked to Jessica Schildman (the early childhood ministry director) at West Side Chuch in Springfield. She said that the ministry staff works with the family to create a plan for their child(ren). They will work as a partnership with the parents to create an individualized plan that works for everyone involved. She said they had some limitations to the kind of care they could provide but that they want to work with the parents as much as they are able to develop a plan. Also, another thought, maybe you could find a friend in the Church who would commit to working with Alex in the nursery and in a classroom setting to make sure his needs are met so that you and Adam are able to go back to Church too. Just a thought... easier said than done I know... but I do certainly think that a Church community should provide the care and services that special needs children need and deserve too. I wish I could help...

Brandi said...
This comment has been removed by the author.
Brandi said...

Wow Jessica, what a response you have received. From "just do it yourself" to "our church has a program" to "we are in your same shoes" to "I no longer believe and it's o.k" to "I've been on church staff and am no longer because of church idleness" to the naive comments left by anonymous in comment #5, I am glad I read before I commented.

I have been wanting to write on the same subject for a long time but have restrained for fear of it being taken wrong, especially by two people groups that read my blog, people we go to church with and friends that attend other churches. I didn't want to be further judged by them. But now that the cat is out of the bag, I feel more confident because I know that we are not the only ones experiencing disappointment from a place we used to call "church".

We were just like you Jess. It felt weird to NOT be in church. We were there every Sunday, Sunday night, went on missions trips, served from time to time, tithed, and went to church functions.

Brandi said...

Fast forward to when Nathan came along. We received meals, a monetary gift to help with medical expenses, a few "we are praying for you" cards and a few "let us know what we can do to help" offers. Our pastor came up to the NICU to pray for Nathan and told us that Nathan would be given a one on one at church when we returned. We were so grateful for all of this and felt very loved and taken care of by our church body.

I must say, that is ALL past tense. I can say that I took people up on their offers to "help", HOWEVER;the few that did come to help, NEVER came back. There was even someone from our church that offered to coordinate help...she had a few names (out of a church of 2000 people), but once again they came, committed to help, but, they NEVER came back.

I knew in the beginning that the road was going to be long so I spent several hours on the phone trying to coordinate help myself. It only led me to more tears, being let down, and ultimately putting my faith on a hiatus for a while.

Like you, we spent several months in the hospital throughout the first 18 months of Nathan's life. Not to mention all of the doctor's appointments, therapies, meetings, tubes, insurance calls, medical equipment, special feeds, special diets, vomit, pneumonias, viruses, taking care of a three year old and trying to maintain a healthy marriage. And, like you, the last thing I had time to do was spend time on the phone trying to coordinate help. The little time I did did have to invest in this ended up being a failure.

During this time I would often think to myself, "Man, we don't live in Africa, we don't live in Hati, we live here, in the neighborhoods with the people and the pastor of a church we call home." We send missionaries out to reach the people of these countries, to feed them, and to take care of them physically and spiritually. Yet, we live here and we desperately needed and still need help from time to time and yet it's not there. It has left me confused, hurt, and ultimately bitter.

Nathan has been on our church prayer list since the day he was born. We get a weekly call to see how the church can pray for him. We are visited every 6 to 8 weeks by an associate pastor that drops by for a short stay. Don't get me wrong (and some of you will), I appreciate the call and the visit, but I have also found that the phrase "I'll pray for you" more often then not is a cop out from actually "doing" something for someone that really needs help. If there are hundreds of people in my church community that pray for Nathan, how come not one single one of them can come and help, in the trenches, where it is hard? This has been my thought process for two and a half years and I am now resigned to the fact that prayer is the only thing that "church" has to offer.

Brandi said...
This comment has been removed by the author.
Brandi said...

In the past few months I have finally found someone (a friends nanny) that comes in to help for a few hours a week. She is absolutely amazing! She is not in the medical field and has no medical training but has offered to learn how to tube feed, administer medications, and do therapy activities with Nathan. She's what we needed two years ago.

Now that Nathan is older and is currently doing better, we are told that he still needs another year away from major illnesses, which means no church, no activities around other children in public settings. We could chose to ignore the advice and expose him to the germs, but ultimately it ends up causing more permanent irreversable damage to his lungs, more trips to the doctor, more tubes, medications and hospitalizations. No thanks. So, it means that we have to keep Bella and ourselves away from places where there is a concentration of people/germs. It does not and has never meant that people who are not sick can't be around us in their homes our ours. However, I know it has been interpreted this way. And, I think Jess, it's the same for you. As long as people are healthy, we can be around them, just not when there is a known illness.

I was a part of what went on within those four walls for a long time. Yes it is a culture where norms are set and it is evident that we no longer fit within those norms. I know my job with Nathan is to educate others and teach them how to integrate and accept people with intellectual and physical differences. I don't have the energy to do that right now. I just expected that within a church of people that are supposed to be loving, compassionate, and live by biblical standards of helping yet the meekest of all, our experience would have been different.

Brandi said...

So for now, my faith is on hold. Don't know where we go from here, but I know that if God is truly a loving God, he will meet me if and when I am ready.

It appears to me that the anonymous writer in #5 may actually be expressing some guilt or maybe inadvertently acknowledging her inadequacies at your cost. I would expect that if she is a faithful reader of your blog that she wouldn't need to ask how she could help, she would be knocking at your door with cleaning rags, a bag of groceries, a rake, a bag of books to read with the kids, or even an offer to let you go out for the evening.

Oh, and by the way, the one on one we were promised in the NICU never came about because he was too fragile. Yet we have a church that has several doctors, nurses, and therapists in it. I give.

I know I have taken too much liberty with this comment Jessica. So if it's too long and takes up too much space, please feel free to delete it, I wont be hurt! Besides, it makes me feel better just getting it out, even if no one reads it.

Love you friend. I hope you find a peaceful place in your heart regarding this subject.

Cindy said...

Brandi, I agree with everything you said! We have also been sorely disappointed with the response of our church as you have. But we've decided that if it's important to us and our family, we'll find a way. That's worked for us, and we've worked through it...I still resent the lack of support, but I know, for me, if I dwell on the resentment, I'm not a better person for it. (You don't want to meet that person!) So I choose to not dwell on it and look for the best. I guess we've given up on getting support and figured out how to do it ourselves. Different way of finding a solution...

Jessica mommy to Alex/ RTS said...

Cindy, you're right. I know it. My expectations of our church were different than the reality. I thought the church was there for those in need, but it seems they are not.We got that initial support, cards, dinners ect....but then it stopped and we were gone, either no one noticed or no one cared and it hurt. I've got a lot of pride to swallow still.

Jacqui said...

This is such a relevant topic – thank you for being brave to raise it. I must just say that you, Jessica, are a real pioneer thinker in your approach to the world. I would dare say that God has gifted you with an ability to see what could be, and see how things can work better – and to be part of bringing change.

I am writing from a perspective of being in Africa so I am not sure if our church experience is the same. My view is that the question that you have raised goes to the heart of what is the purpose of church. If I look at the New Testament the church was described as a BODY or a FAMILY – and not so much an institution or a bureaucracy or an organisation. The problem is that we people have created a system so that it is “easier” to come together and worship – but in so doing we have created programmes, times, expectations, behaviours, venues, rituals and activities that are helpful on some level but are also excluding on another level. Kids with special needs – along with others who don’t fit into the mould (blind, deaf, those in wheel chairs etc) – don’t have a place, and are not actively included.

If a church functioned more like an organic and flexible BODY or FAMILY then it could be a whole lot more responsive to the variety of needs of those who attend. But then we would have to give up some of our predictable and comfortable systems in order to embrace the greater flexibility and greater compassion.

But that will require radical change that is definitely beyond the influence of one person. So how do we make the best of it in the given situation? Looking at my own life – I know that I didn’t have a clue what it was like raising a special needs kid until my Matt came along. And I don’t know how I could possibly have known unless someone explained it to me. So I guess the question is: how can we explain our experience to our churches in such a way that it causes a change in behaviour? I think this question is worth spending a lot of time discussing.

And I know that there is that CRAZY season of medical issues and appointments – of fear and anxiety – of sleeplessness and being overwhelmed. And there is NO WAY we can expect someone in this season to spend one second of their time to change their church. But there are those of us who are further along the road – where the frightening medical issues are now under control or part of our new normal, where we have incorporated the therapies and appointments into our routine and where we are able to lift our head above every day survival…and so maybe we can start exploring ways of enlightening our church communities as to the realities of raising a kid with special needs, opening their eyes to the practical as well as emotional support such families require. And we can trust that God will raise up people who will feel called to minister to these kids and families – in the same way as people are called to mission trips to Africa!

Wouldn’t it be amazing if churches were constantly asking the question as to how they can be more inclusive of all who attended? How they could be more practical in their support of those within their own community? Of how they could change the system/structures to make space for everyone? I share your dream! I have a sneaky suspicion that we are going to have to be part of making that dream a reality - for those families who will be following in our footsteps.

connie said...

Wow. I don't even have a comment; but I am thinking a lot, now. Oh, and guess where we are right now? The local one, though, and hopefully going home tomorrow.

Cindy said...

I stumbled across your blog today (I love to blog hop) and fell in love with Alex from the first few pages of posts. I have been known to sit down and read an entire blog in one sitting, but life is too busy today, but I shall return and read it all soon.

(I do not have any special needs children, however when my youngest was born, he was premature and had short term health issues that prevented him being able to be in a nursery or group setting until he was almost 18 months old. So, I learned a lot about being creative in regards to church)

But, on to the topic of this thread - church and special needs. I am a children's minister in a church of about 600 people. In my "first life" I was a special education teacher, so I brought a new perspective to church - instead of theology, child development.

About nine years ago we had our first special needs child. The family had been members for awhile and then the red flags began to appear (he was diagnosed with autism around the age of 3). Now the question of "what do we do" had to be addressed.

I found with education the support for the family was fabulous. I did not want to start a special needs ministry where we had special classes, instead I wanted the child and family ministered to right where they already were. Each year we evaluated what age group he was ready to be with - based on social and academic skills. When I recruited for Sunday School teachers, I recruited for shadows. I treated the position as important as a regular teacher. Any ministry they watned to participate in was available - nothing was off limits.

Then came special needs child number two - no program, just an individual plan. Then number three, and four. No, we do not have a huge program, but our doors are open to anyone and everyone. If our church is where God wants you, then let's talk.

A couple years ago we had a child enroll in our VBS. Under special needs nothing was marked. Things went good on Monday and Tuesday (although it was obvious she needed a little extra help) but Wednesday, a loud noise occurred during open assembly and all control was lost. I literally had to run and chase after her and finally physically restrain her to get her calmed down. When we called the mom she said "well, she has autism but I was afraid if I told you she wouldn't be allowed to come."

I know there are churches that would have turned her away, but we would have gladly made arrangements for her. Instead hiding created a bad situation for everyone.

I have been to IEP meetings with parents, invited therapists to our Sunday School, and meet regularly with our special need families. I am even working with a family right now that has a 3 year old with some red flags showing. I have learned to use the EPI pen and infant CPR.

Not all churches are open, I know that from experience. But there are people out there who love God so much that they are willing to do whatever it takes to allow everyone an oppportunity to worship together and to know Christ to the best of their ability. I encourage you to return to your "family." Ask for meetings in advance, discuss your needs and your desires. Be real with them and if they aren't willing to be a true family to you, then perhaps a new family is needed.

Jesus said "come unto me all who are weary and heavy laden," seems to me this applies to the church.

Cindy said...

I stumbled across your blog today (I love to blog hop) and fell in love with Alex from the first few pages of posts. I have been known to sit down and read an entire blog in one sitting, but life is too busy today, but I shall return and read it all soon.

(I do not have any special needs children, however when my youngest was born, he was premature and had short term health issues that prevented him being able to be in a nursery or group setting until he was almost 18 months old. So, I learned a lot about being creative in regards to church)

But, on to the topic of this thread - church and special needs. I am a children's minister in a church of about 600 people. In my "first life" I was a special education teacher, so I brought a new perspective to church - instead of theology, child development.

About nine years ago we had our first special needs child. The family had been members for awhile and then the red flags began to appear (he was diagnosed with autism around the age of 3). Now the question of "what do we do" had to be addressed.

I found with education the support for the family was fabulous. I did not want to start a special needs ministry where we had special classes, instead I wanted the child and family ministered to right where they already were. Each year we evaluated what age group he was ready to be with - based on social and academic skills. When I recruited for Sunday School teachers, I recruited for shadows. I treated the position as important as a regular teacher. Any ministry they watned to participate in was available - nothing was off limits.

Then came special needs child number two - no program, just an individual plan. Then number three, and four. No, we do not have a huge program, but our doors are open to anyone and everyone. If our church is where God wants you, then let's talk.

A couple years ago we had a child enroll in our VBS. Under special needs nothing was marked. Things went good on Monday and Tuesday (although it was obvious she needed a little extra help) but Wednesday, a loud noise occurred during open assembly and all control was lost. I literally had to run and chase after her and finally physically restrain her to get her calmed down. When we called the mom she said "well, she has autism but I was afraid if I told you she wouldn't be allowed to come."

I know there are churches that would have turned her away, but we would have gladly made arrangements for her. Instead hiding created a bad situation for everyone.

I have been to IEP meetings with parents, invited therapists to our Sunday School, and meet regularly with our special need families. I am even working with a family right now that has a 3 year old with some red flags showing. I have learned to use the EPI pen and infant CPR.

Not all churches are open, I know that from experience. But there are people out there who love God so much that they are willing to do whatever it takes to allow everyone an oppportunity to worship together and to know Christ to the best of their ability. I encourage you to return to your "family." Ask for meetings in advance, discuss your needs and your desires. Be real with them and if they aren't willing to be a true family to you, then perhaps a new family is needed.

Jesus said "come unto me all who are weary and heavy laden," seems to me this applies to the church.