There’s another thing, though, that caught my eye. It was the number of families that said “I tried, but I didn’t go back.” Sometimes it was because someone was rude to them. Sometimes it was because they felt out of place. Sometimes it was simply because “it didn’t work.”
See the first post here: When God's gifts look like limitations: My plea to "The Church"
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.
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?
Written by Meredith Cornish
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