Wednesday, January 30, 2013

When God’s gifts look like limitations: My plea to “The Church”

Yesterday the title of this post hit me smack in the face.  I posted on FaceBook and said "I want to do a Bible study about When God's gifts look like limitations: Exploring the Church, God's Word, and where I fit in as a parent of a child with special needs.  Now someone needs to WRITE it!"  Since writing that post, it was suggested that I need to do just that and write a Bible study.

Although I appreciate the vigor and excitement that others have over the prospect of something like that being written, I recognize and greatly respect the process that a Bible study is written with, and I don't feel called nor equipped to be the author of any study right now.  More than anything, right now I NEED a study.  I need to be fed and I'm not in a place to be of spiritual leadership to others that are in the same boat as I am and who have been floating out here even longer than I have as a parent of a child with special needs.

In the last 6 months I've asked a lot of people a lot of tough questions.  I've drawn some difficult conclusions, made up plans of action, and set up meetings within my own community of faith to see what our answer is to this very post.

I am writing this to "the church," an ambiguous body that I've addressed publicly several times over the past months.  "The church" isn't my own church or believers in our denomination.  It isn't people in our town or even our own state.  "The church" is every organized body of believers in Jesus that consider themselves a part of the greater Body of Christ.  If that includes you and your own community of believers, then this plea is for you as well.

When God’s gifts look like limitations: My plea to “The Church”

This is from Me.  Me, is a parent of children.  Blessings.  Children with special needs.  "Me" may be You, if you fit in that category.  This is to The Church.  The Church is a body of believers.  Christians.  People of like faith.  "The Church" may be You, if you fit in that category.

A child is a blessing.  A gift from God.  There’s never any question that every child is a gift, even when the child has special needs.  Whether it’s a developmental delay, a physical difference, blindness or deafness, or a sensory integration issue, the child is still a special blessing from God.

When you parent a child with special needs, the special gift that they are can also feel like a limitation.  There can be differences in how a parent deals with their day to day routines, schooling, and even trips to the grocery store or planning family days together. 

The uniqueness of raising a child with special needs has been described by many as “normal to me” therefore not so different from what someone else may experience.  By some, however, it is described as “a difference that limits my everyday interactions,” “a daily struggle,” or “a reminder that my family is a ministry within my own home.”   Tough revelations, but most parents can relate to those struggles regardless of whether their child has extra challenges presented by special needs or not.

Where the church is concerned, however, there is a different dynamic among families with members with special needs.  There are a few who are part of churches with successfully implemented programs designed to integrate, accept, and educate among the special needs population.  Unfortunately, churches implementing these types of programs are not very easy to come by.  A majority of parents with children with special needs fall in to one of two other camps.  Either they struggle week by week to “make things work” for their child with special needs, or they have stopped going to church altogether because they cannot attend as a family and do not feel accepted because of their special needs child.

There are churches on every corner in my hometown.  Yet there isn’t a single ministry that our community would point to as a church with a special needs program for children.  In speaking with parents of children with special needs in our town, most just don’t attend.  The few that attend a church have usually found their own solutions such as asking a friend of the family or a teen that they know and trust to stay with their child in the children’s program during church.  Sometimes this works, sometimes it doesn’t.  Others have their child sit with them in the adult service and leave if they are being disruptive, or they try to leave their child without support in the children’s programming but are frequently called out of the service to come and get them.  A few leave their child at home with one parent or a sibling and the family doesn’t attempt to worship all together.

Our town is not a unique in its lack of special needs support.  Most communities face the same challenges, and special needs church support is often only found in larger cities even though smaller towns have large populations of children with special needs. 

In 2008 a US survey* found that 20% of families with children have a child with some sort of special needs.  The increased rate of autism diagnosis may have heightened that percentage even since that survey was done.  If at least one out of every five families has a child with diagnosed special needs, then is the church truly at risk of losing twenty percent of the population from being able to attend services effectively by not providing for the needs of those families?

If ministry begins at home, and families that have been in the church for years suddenly find their first ministry- their family- is unable to participate in church, then has the church lost even those who were believers before their child outgrew what the church could offer in terms of their child with special needs? 

Has the church, without intending to, said to these families “you are answering God’s call on your life by raising your child with special needs, so good luck with that, because you can no longer attend our church.”

I know that the pastoral and executive leaders that are known to me personally wouldn’t dream of actually saying that, but by their inaction, they say just that to the community of families affected by a person with special needs.  There is not an intentional discouragement from including these families in the fellowship of believers by pastors and congregations, however the lack of intentional inclusion doesn’t leave these families with many options for participation.

My cry to the church is this: SEE the people with disabilities.  ASK yourself whether they can comfortably attend your worship service.  RECOGNIZE that their needs may differ from other families.  TALK to them about how you can serve their entire family.  PLAN programming that can accommodate children of varying needs so their family can join in the church worship and community.  ACCEPT them in to fellowship.  EDUCATE the church body to bring awareness as well as comfort to the congregation.  WELCOME new families in to the church!

There’s an unreached population.  One that quietly slips away from church at a time when they need the church body the most.  Those are the families including people with special needs.  They find themselves unable to attend worship services, feeling rejected by the church, and at a time in their own lives when they often need the community of the church the most.

That is my plea to the church.  Will the church hear the call?  Will they answer?

READ Part TWO: When God's Gifts look like limitations: My plea to Families of children with special needs

Written by Meredith Cornish

* "The survey by the Health Resources and Services Administration, part of the U.S. Department of Health and Human Services, found 10.2 million U.S. children in the have special healthcare needs, or 14 percent of all U.S. children. More than one-fifth of U.S. households with children have at least one child with special needs."  Published March 2008.

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Thursday, January 03, 2013

This week (and a Happy Birthday! :) )

It's been a busy place around here!  During James' two day adventure at the hospital on Friday and Saturday, Michael took on the other 7 kids on the homefront and even made it out to horse therapy on Saturday morning!  Sunday we all got up and going then realized that church was early and it was a combined (aka there would be limited seating) service.  We had everyone up and dressed for church before realizing it was also a weekend with no elementary age childcare.  Let's see... James was already staying with us since he'd just been in the hospital, Aleksa always sits with us, Delaina always sits with us.  Then add on Emma, Kristopher, and Brianna without childcare and we would have a busy group!

We went anyway.  :)

Sunday afternoon Michael started on his project... build-a-pantry.  He finished it on New Year's Day and it is WONDERFUL! :)  A 4' x 2' pantry that extends up to the 10' ceiling.  Exactly what we needed for our family's needs and it looks great in the laundry room.

We invited a friend over for New Year's Eve which then turned in to three couples coming over including our friends, my parents and sister and brother-in-law.  We had fun just hanging out and that good ole midnight toast (minus the bottle of alcohol free 'champagne' which someone happened to break the neck off of and send glass shards flying...)!

Wednesday flew by as Michael returned to work and I attempted to tackle our "closet room" to attempt to make some better arrangements in there that maybe... just maybe... we (I) can keep up with better for 8 of the kids' clothes.  That, and actually caring for the 9 children, which is of course more important and made the task take allllll day long!

Thursday was therapy day, which would be today!  2 1/2 hours of OT and PT rotations for 5 of the kids (James had this week off) and Kristopher and Lynae were in tow again since their school isn't back in session until next week.  Plus Delaina, of course, which equals 9 little people, and a lot of 'busy' in the gym room at our therapy center!  Then tonight our speech therapist came out to the house to work with three more kids and I disappeared for an hour, leaving Michael with all 9 kids, quite possibly for the first time while they were all awake... though he may have kept them that I don't recall.

I took off to the shooting range!  It was my first time firing... or even holding... a gun... or even a bb gun for that matter... :)  I shot a 9mm and did pretty ok if I do say so myself :)  I hit the 'target paper' every time, got ONE bullet on the "outer body", maybe 8 or so on the inner torso, and every other bullet was straight on the target.  That was one dead piece of paper, as a friend put it!

This afternoon I scheduled James' g-tube revision to put in his Mic-key button, and surprise surprise... it will be tomorrow!  Mike will be taking him for that since it can be difficult to juggle the baby and James, and Mike probably prefers to take 1 child to the hospital rather than keep 7 at home again! :)  I'm sure James will do fine, and it will be nice for ALL of us to have the low-profile button for James since he's constantly flapping it, pulling on it, having it dangle, etc.  The mic-key is much more manageable and will give him more 'freedom'.

Saturday is horseback lessons again, for the boys this week, and then our last Christmas celebration, this time with my siblings.

I can't leave off one of the most important parts of the week, though, and that is sweet Brianna's 7th birthday today!!  It's hard to believe that she is seven already!  I'm sure I say it every year, but wow, how her birth has changed our lives so much, and for the better!  We are so grateful for a wonderful medical team that kept both she and I safe and made some tough calls through her emergency delivery, and for our pediatricians that kept searching to get answers about what was 'going on' with her.

We didn't know that Brianna was going to be born with Down syndrome, and even after her birth we didn't have any indication that she had Ds.  It wasn't until she was 5 weeks old that doctors began to suggest that they had been seeking out answers for several weeks and wanted to run more diagnostic testing to 'rule out' any chromosomal abnormalities.  In fact, they told us they were considering a different issue pertaining to chromosomes.  When Brianna was 8 weeks old we got the phone call to say "come to the pediatrician's office now" during their lunch break and we were brought in to a room and told "there's a problem with Brianna."  Then, as they told us that she didn't have the condition we were originally told they were considering, but actually had Down syndrome, our hearts' burdens LIFTED and we were grateful that God had gifted us this little baby girl with a condition that to us... was nothing bad :).  Of course we also were told to go straight to the hospital because she could have a heart condition, and two days later that fear was confirmed when we learned that she had a major defect in her heart and would need open heart surgery... But none of that was a part of her birth story.

Brianna is such a beautiful gift to us, and her life gave us the ability to say 'yes' to more children who we may or may not have felt the same burden for if it wasn't for her.  Our lives could have been very different, but I wouldn't want to have it any other way.  What a blessing it is to have each of our children, and to celebrate the joy of Brianna's birthday today! :)