Friday, February 15, 2013

An update and some thoughts on special needs and the church

I cannot believe it has been over two months since I have written on my blog! A quick update: Joy is doing amazingly well! She has settled into a great routine, and really keeps us on our toes.  We have been blessed with wonderful teachers and therapists to help Joy, and everyone is truely amazed by the difference in her over the past 4 months! She loves her family, her teachers and her church family. Right now, the biggest struggle we have is figuring out how to help her in her learning abilities. She had an MRI about a week ago to help us determine what is going on in her brain. Honestly, I don't understand much of what the MRI told us. Her condition is very rare and every person who has this brain defect is affected differently, so now we go see more doctors. We will be taking her to do further testing to help figure out the best way to teach her. She struggles with speech and language, so reading is a HUGE challenge. She also struggles with numbers in any way, shape or form, so even simple math makes no sense to her right now. It really breaks my heart to see her struggle in these areas because I LOVE to read and I cannot imagine my life without this ability. I know God will give us the strength to help Joy in every way we can! Pray for her and for us as we continue on this journey of helping her to become everything God wants her to be. I love having her as my daughter, and I will love her no matter what. Even if she never is able to read. Even if she can never do math. Even if she has challenges her whole way through school.  BUT I want what is best for her and I want to help her in every way possible.

Having Joy in our family has opened up to me a whole new insight into special needs children and the church. While Joy looks like a child who has no special needs on the outside, she DOES have special needs. She has trouble sitting still to listen, because she sometimes doesn't process what she hears. She has trouble following a storyline, following simple instructions, and also sometimes remembering what has been told to her in the past. Her special needs are not on the outside, but they affect how she acts, which in some ways makes it more difficult as a parent. I feel like people are judging my parenting skills by the way my child acts, but I am getting over it! It really doesn't matter what other people think anyway!

 I have been in church my whole life. I went to church growing up (and still do now!): Sunday morning, Sunday night and Wednesday night. I went to Bible college. I found the love of my life at Bible college, and we got married. We've been in ministry for almost 14 years together now. We are transitioning from youth ministry to the lead pastors at our church here in Louisville, KY. Honestly, I look at the church (I am commenting on the whole of westernized church, not simply our local church!) and I wonder: Are we as the church really doing all we can to help special needs children and their families? What kind of support system do we have in place and how can we do better at reaching these families that desperately need understanding and support?  What about adopted children and families who have adopted. Many, many adopted children have special needs.  It seems we have created an environment in "church" that really is not friendly to special needs. We expect children to be quiet, slow down, be reverent. We expect them to sit still and listen, BUT some of these kids will never be able to understand a Bible lesson taught by a teacher. They cannot physically sit still. They cannot mentally process what a teacher is saying for 10 minutes. Have we shut the door on these kids? Have we made parents of these kids feel unwanted, unloved, unwelcome? Have we made them feel uncomfortable, maybe because WE are uncomfortable? Have we passed judgement when we maybe don't know what kinds of special needs the parents are dealing with? Have we made them feel embarrased by the way their children act? For example, Joy loves to sing. And when I say sing, I don't mean quietly sing. She likes to BELT IT OUT at the top of her lungs!!! Since she has difficulty with speech and language, she does not sing the words right at all! So here I am in middle of church and  you can hear Joy above EVERYONE else, singing words that make no sense. I have tried to quiet her to some degree, but I want her to know it is alright to praise the Lord with all her heart!  Thankfully, the people in the seats around me have never made me feel embarrassed or looked disgusted by how loud my child is. In fact, I have had several tell me how "precious" it is. I feel blessed by how everyone in our church family has embraced Joy and made her feel a part of our church family. I can't help wondering, though, does the "church" as a whole EMBRACE those with special needs and their families, or do we look at them with disdain or pity?

While many of these children may not be able to comprehend a Bible story or sit still through a lesson, what these kids and families CAN understand is LOVE. Welcoming arms. A listening ear. An understanding teacher. Others that will invite them out to lunch, even if their children are not "perfect little angels".  People willing to watch their children while the parents have a much needed night out.  I think many parents of special needs children have lost the strength to even enter the doors of church because overall the "church" has made them feel like a burden or a failure. The "church" has passed judgement on their parenting skills. The "church" has not even tried to understand where they are coming from and all they are going through: the therapies, the tests, the doctors.   I want to change this. I want to make a difference in the church. I want to make families feel welcome, no matter what kind of special needs they might be dealing with. I want to open our doors and love like Jesus loved. I want to create an environment inside and outside the church where we love and support children with special needs and their families.  I am not sure how to accomplish this, but it is something I am pondering. How do you think the church can do better at supporting special needs children and their families? How do you think we can make our churches more inviting or accommodating to families with special needs children? How do you think we as a church can LOVE like Jesus told us to? If you have suggestions, I would love to hear them. Please comment below or send me a private e-mail message.

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