Last week as I typed out my plea to
the church about incorporating families with members with special needs in to
the congregation, providing for their needs, and finding ways to draw those
families in to fellowship I had NO IDEA how big of a response it would receive.
I am amazed at both the outpouring of stories I’ve heard from special needs
families and by the churches that have stepped up to say “come here!” because
they ARE doing what I wrote about. In three days that post has been viewed
over 3,000 times and in over ten countries.
In addition to the success stories, though, I’ve heard stories of people
experiencing exactly what was written… that they’ve tried to go to church and
they no longer are able to attend because of their child with special
needs.
As I opened my email I was brought
to tears as I learned of the burdens so many families are carrying. So many families have been hurt and haven’t
tried to go back to a church because there just isn’t a place for their child
or family member with special needs in that community.
When God’s gifts look like limitations: My cry to the families
with members with special needs
Let me lay this out at
your feet: I don’t know your situation.
I don’t know your personal burden or the struggles you’ve faced. I won’t pretend to understand the uniqueness
of your situation because reality is this… everyone is different. I won’t write here how you need to be, or
what you need to change in order to be able to incorporate in to the Body of
Christ that is “The Church” and the established systems that they have because
we all know that it would be pointless.
If you aren’t attending a church because you have a child that cannot attend
and because there is not a church that has an appropriate accommodation for
your child to participate in so that you can attend, then there is no use in me
writing to you to share my views on inclusion in the church or how it is
supposed to look.
We all know that what we hoped would be and what life really looks like can
sometimes be a stark contrast, even when we LOVE the life that we are living
and genuinely would not change it for anything.
We know we can see our own GIFTS from God as LIMITATIONS in what we can
do in life sometimes.
More than anything, as a parent of children with special needs myself, I can share
a few things about what it means to me to be different, what it means to want
something for yourself and your child but know that it is unreasonable, and
what it means to be rejected.
Here, my friends, is
where I really want you to perk your ears up for just one minute, though, so I
can share with you the positive message that I believe is being given to us
through all of this.
We are not a
burden. Yes, you read that right. We are not a burden. YOU are not a burden. YOUR CHILD is not a burden.
The only burden there is in your family and mine is the burden of CARE that we,
as parents, place on our shoulders. We
often accept the “self talk” that says we need to bear our own troubles. We
don’t want to be “that family” that asks for others to go out of their way for us.
We don’t want to be known as “the family with kids with special needs.” We
don’t want others talking about us, discussing our children.
Before I gave birth to
my daughter with special needs I was a children’s minister at our church for
several years and up until she was a year old. I hadn’t been dunked under
water and held there until I figured out how to swim… YET. Now that I’ve
been thoroughly immersed in the special needs community for seven years, I see
and understand the needs that lay within it. Up until now, though, I
haven’t recognized the need in my community for special needs families.
In all honesty, I didn’t see “people like me” in the church, and I didn’t
really know why. I didn’t even really think about it.
Even the first 6 years
of my daughter’s life I didn’t see the need, or hear it talked about. And
in reality, it wasn’t her that opened my eyes to the need. Brianna goes
to children’s church unaccompanied and is well accepted within the
congregation. If I had only Brianna in my family I might still have missed
the boat. I might not have seen what God
wanted to open my eyes to. What a
blessing that God blessed us with five more children with special needs through
adoption. It is actually through the
uniqueness of our home situation that I have had my eyes so very well opened to
the need within my own family and as I researched to find an answer for myself
and my community, I found the need throughout the greater church as well.
You see, I have not one,
but six children with special needs. Not to exclude them, I also have
three ‘typically developing’ children as well. My seven year old,
Brianna, is fully integrated. My two ten year olds, my eight year old,
and my two six year olds are not as easy to “fit” in to what our church has
available.
Let me share with you
about my children. Chances are good that you might find a piece of your
own child within the differences my children represent. I hope that our
experiences might help you to know where we are in church, and maybe give you,
as a family with a child with special needs, that hope and encouragement to
press forward as well.
Aleksa is 10 years
old. She has Down syndrome and attachment and behavior
difficulties. Right now she stays with my husband and I during church
services because she can’t be left with unfamiliar adults. There are a
lot of “little boundaries” with Aleksa and as soon as someone allows her to
break one or two of them (that they may not even know about) then there’s
really no bringing her back in.
Emma is also 10 years
old. She has Down syndrome, autism, and mild cerebral palsy. Emma is
nonverbal but understands sign language.
She walks, but not well or for long periods of time, since she only
began walking at 8 ½ years old. Emma has three buddies that rotate
attending services with her once each month. The fourth week, or if any
of the buddies aren’t able to attend on their week, Emma comes to church with
us. When she goes to children’s church, she often doesn’t make it through
the service and her buddy ends up walking the hallways with her until church
gets out.
Wesley is 8 years old
and has spastic quadriplegic cerebral palsy. He is also legally blind, nonverbal, incontinent, and
uses a wheelchair. At the moment he’s attending children’s church in the
nursery with our typically developing 3 year old daughter in the 2-3 year old
class. We decided to put him in this class for several reasons including
separating him from his two brothers with special needs (in the 4 yr old and
kindergarten classes) and because our daughter enjoys him and is a great
‘voice’ and ‘hands’ for him at times. He is in first grade, however
he wouldn’t handle our children’s programming with all of the lights and sounds
that is in place for older kids.
James is 6 years old and
has Down syndrome as well as sensory processing difficulties and ADHD. He, too, is nonverbal and incontinent. He
goes to our 4 year old class in the church nursery and usually does pretty
well. He occasionally has “fits” where he has to be removed from the
classroom, however some of the nursery staff has been able to take him out and
give him some redirection. We are called out of the church service on
occasion for James, and more as he is getting older.
Micah is also 6 years
old. He has Down syndrome and is hearing impaired. He communicates basic needs using sign language. Micah is in
kindergarten and attends his age-appropriate classroom. A friend that is
a young teen helps in Micah’s class when he can. On weeks that there’s not
an extra helper, we often bring Micah to church with us. Even with his helper,
we are frequently called out of church for Micah as he acts up as well.
In case you’re counting…
our 6 month old still behaves well in service and doesn’t do great with
separation, so she sits in church with us too. Add Aleksa, sometimes
Emma, and sometimes Micah that sit in church with us, and getting called out
for James or if Micah attended children’s church, then for him too… and you can
probably picture what our Sundays look like over any period of time.
We love our
children. I would NEVER look at them as a burden, and I think that the
idea that someone else might consider them as such is one of the reasons that I
might not want to push for anything special to be provided for them.
Sure, I wish people WANTED to, but if someone doesn’t approach me and say “I
want to do this…” then I see my asking as a weakness.
In me. In my
family. In my child. It’s opening up to the possibility of
rejection.
Asking for help makes me
feel like someone else may consider me, my children, my family, a burden.
It opens me up to feeling that I’m perpetuating the myth that because our
family is different, it is somehow less. It reinforces that, as an
adoptive parent, we “chose” this, and we need to live with it. When my family dynamic is one where people
assume that I must always need help, and my situation must be so hard… that I
am somehow bearing some huge burden... that I must have entered in to
sainthood to have the family I do. That they could “never do what I
do”. I get tired. And
saddened. So I don’t open up.
You know. You’ve
heard it too. As a parent of a child, or many, with special needs, you’ve
been in those shoes. You recognize that the person that says “I could
never do that” isn’t the person you want to sit in Sunday school with your
child, because you know they just don’t GET it. They don’t
understand. You know that your family is your first priority and
therefore as a parent of a child that cannot talk, or express themselves
clearly, or walk, or that isn’t toilet trained at an older age, or one that
cannot hear, cannot see, or who can’t regulate their sensory system and goes
off the handle… that YOU need to be there for that child at all times. In
all situations. And no one else CAN do it.
That very thought is the
one I want to speak to the most. We are right. No one else can do
what we do. No one else can be the parent to our children and love them
like we do. No one else KNOWS our children like us.
But.
For one hour. One
day a week. Someone else CAN show our child unconditional love while we
step out the door, walk down the hall, and sit in the sanctuary with the Body
of Believers. Someone else CAN help them play, help them see, help them
explore. Someone else CAN tell them Bible stories, hold their hand, and
even reassure their fears.
And one hour. One day a
week. We can stand up, close our eyes, lift our hands, and praise our
Lord without distractions. We can release the burdens of our day, our
fears of a thousand tomorrows, and our anxieties from a thousand yesterdays.
But we, as parents of
children with special needs, need. We need to open up. We need to
allow ourselves (not our children… ourselves) to be vulnerable.
If we silently bury our
head, as we often get pretty good at while dealing with some of the many other
more complicated parts of parenting a child with special needs, then the church
can’t hear and doesn’t know the need.
WE, as families that
include children with special needs, need to OPEN UP! We need to be
willing to speak our needs, especially when we’re asked. We need to be
willing to listen to ideas of others, willing to share what we think will work
for our children, and willing to talk to people that might not “get it” but
that WANT to. We need to open up our “bubble”
and let people in.
Let’s put it out
there. Let’s say “we need you.” Let’s be teachable, and be
flexible, and let’s let others in to our “fold” so that they can know how to
best minister to our family. The longer we stay locked up, tight lipped
and don’t ask for help, the longer it will be for the church to ‘see’ us.
My cry to the families
of children with special needs is this: OPEN up. SPEAK your
needs. SHARE your desires. HELP get things moving. ALLOW your
hopes to be known. SHARE your fears. BELIEVE that God can do
it. TRY what’s offered. RELEASE your burdens. EMBRACE
community. LOOK to God.
Most of all? BE
WILLING TO TRY. Because if WE don’t try… how can we expect there to be a
change?
Read part 3: http://cornishadoptionjourney.blogspot.com/2013/02/when-gods-gifts-look-like-limitations_5.html
Written by Meredith
Cornish
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He was back to his baseline. What does that look like? Jumping on the bed, touching everything you say ‘no’ about, giggling, breaking down in fits of wiggles, then the very next second screaming in a fit of anger. This is James. He did ok, considering :).