Friday, June 27, 2014

Special Needs And The Church, Revisited

Yesterday, I wrote a post on what the church can do to help those families dealing with special needs. It was a good post. I made some valid points.

Today, I want to disagree with myself. 

I wrote:
We won't always be in crisis. Personally speaking, my family has a lot to offer. We have gifts and passions that we would love to share.
I wish I hadn't included that. The world is constantly telling us that our children are a burden. I attempted to offset that perceived burden for the local church by promising a return on its investment. I made it sound as if we are worthy of love because of what we can bring to the table.  

How pitiful that I felt required to do so. 

The truth is, some families may very well remain in crisis. Their gift to the church could simply be their neediness and ability to receive graciously. We may never be able to give back in the traditional sense. We may never have the time to volunteer for VBS because of the demands of caring for our children. We may never have the resources to add to the missions fund because of outstanding medical bills. We may not be able to be a regular attendee because of unexpected and frequent illnesses. 

We, like our children, are worthy of love and acceptance from the church, not because of what we can do for it, but simply because we are.

I'm reminded of the lyrics of an ancient Margaret Becker song, "It's never for nothing, when you love with no return."

Church, we need to love these people because that's just who we are. It's what we do. We love people. Not just the pretty ones, not just the happy ones, not just the easy ones. We love people. It's the second commandment and we need to do it better.

Special needs parents spend all our time trying to prove our kids worthy in every other setting...worthy of a quality education to the school system, worthy of therapies or procedures to insurance companies, worthy of story time to the local library...to have to do the same in the one place that claims all life has value, is really too much to take. 

One of the saddest realizations for me when it comes to the American Evangelical Church is this:

If I waddled toward an abortion clinic at twenty-two weeks pregnant, fetus prenatally diagnosed with Down syndrome, the church would be the loudest in convincing me that this baby is worthy of life, has value, and that I need to continue to term. They would preach that he was created in the image of God, that he's being fearfully and wonderfully made, and that God has a plan for his life, and rightfully so. 

But say five years later, my son was given an additional diagnosis of autism. He now has behaviors which include spitting, hitting, and biting. He throws things. He uses diapers and drinks thickened liquids from a bottle. I am exhausted, worried, and stressed all of the time. I decide I need to get back in church. I need spiritual help. I need support. I want my son to know about God. He needs other people pouring into his life. I can't do this alone, anymore.

Only this time, those same people would tell me, "Oh no, he can't come here. We're not equipped to deal with special needs.

It's this type of hypocrisy that is causing people to leave the church in droves. 

It makes me incredibly sad. 

Ministering to families with special needs is not about programming. It's about walking out what we say we believe. 

21 comments:

  1. Now that's a post baby!

    "Their gift to the church could simply be their neediness and ability to receive graciously. " or maybe they bring no gift to the church at all. Maybe their gift will always be only to God.

    Every time you post about church, it brings back so many feelings for me. I want to go write a post, but then I don't. Our "church" broke my heart so many times after Kimani was born that I don't even want to go back there. And there doesn't seem to be any new church that is excited to welcome a family that has two kids with Ds and a Tsunami child. For now, we are done with the hypocrisy of our religion.

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  2. I know. It breaks my heart to see how you've been wounded. My only real comfort in it all is knowing that God is greater than His people. He is gracious in His love for you and undemanding. Hugs to you, my friend!

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  3. I would hands-down rather have someone honestly tell me that they are not equipped versus assuming that they are and courting disaster. I'm not a fan of the "it takes a village" mantra, but when it comes to SN parenting, well, often it does. Not always, but often. When the church starts seeing families with special kids and those kids themselves are worthy of being ministered to, things will change. But I don't really hold out hope. I wish I did, but all I see around me are people whose hearts have not yet been burdened for the least right here among us. (And by that, I mean the PARENTS, not the KIDS!)

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    1. Agreed. I was hoping to bridge the gap by my last post, but it seemed to bring up more walls, with SN parents agreeing and reposting and the rest telling me how impossible it is or how hard volunteers are to come by. :(
      I was most encouraged by a friend's recent experience at her small church. The second time she went with her 17 yo daughter with toddler behaviors, the pastor's wife asked, "What can we do to make this easier for you?" When told she loves to watch Blue's Clues, they set up an area with a tv and a rotating schedule of adults to sit with her. The response was so overwhelming, people only need to serve once every three months...in a church of 100 people! Why? Because they had a heart for her. Maybe there is hope.

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    2. Speaking for myself, and I think I am probably a good representation of the "average" person, I tend to hold back, not because I don't care, but because I don't know what/how to do anything to help.

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  4. Treading lightly here, but you said this ...

    "... but is becoming unmanageable with our current bag of tricks."

    And this ...

    "However, as behaviors have increased and it is clear we are out of our league, ..."

    And this ...

    "Sometimes this special needs road is hard and we need help."

    Those were all things you said about you and Sean a couple of posts ago, yet in this post you say church volunteers and staff are hypocrites who don't walk out what they say they believe when they say, "We're not equipped to deal with special needs."

    I obviously want families with kids who have special needs to be able to plug into church and know their kids are loved and cared for, but I also know that there are only so many volunteers per class, none of which will have any less need for help than you do, and that not all churches have the space for special rooms, extra volunteers for buddies, and so on. KWIM?

    I'm guess I'm just curious why it's ok for parents to say it's stinkin' hard (which it is) and admit a need for help, but scandalous for churches to say the same thing.

    I'm asking with a smile on my face and a sincere interest in what you think. :)

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    1. Probably because we're not asking the church to parent our children or to become a full-time caregiver for them. It's an HOUR AND A HALF!!! And we're in the next room! Even my difficult child that you picked through my blogs to quote me about was able to tolerate (albeit restlessly) staying in the service with the adults without making a scene last week! These are not monsters, even if they sound scary or uncomfortable to the average Joe.

      Ftr, the "not equipped to handle special needs" quote was actually told to me about my son with Ds in the church he was born and raised in when he moved up a class. He's the child that needs NO additional supports and is fully included in his public school classroom.
      It really comes down to heart, as I've stated before. If a church sees this as a need they WANT to fulfill. They will find a way. If they look at individuals and instead of programming, they will find a way. If they walk in love, they will be well received and understood. If they work WITH parents, to find a way, one will be found. If they WANT us there, we will feel it. Many don't.
      I'll be frank. Your post and comments of FB seem to have a "let's be rational about this", "you're asking for the impossible" tone. We in this community get it a lot. I'm asking you to hear our hearts which is why I've laid mine bare and come from a place of vulnerability in these last posts. To tell the person in crisis that she's being irrational, which is the tone I hear, is counterproductive. My community is drowning and we hear the church saying, "Find your own damn life ring!" I'm simply trying to be a voice for all of us. The stories I've been told have broken my heart. The people who have walked away from the church and, sadly, even from faith because of wounds and indifference from the church matter to me.
      I don't give a wit about programming. But acceptance, willingness, and heart mean everything!

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    2. I'm sorry that my tone was misconstrued. I agree that families who have children with special needs should be able to attend church without a problem and am not trying to minimize the hurt or frustration people have felt when that hasn't happened.

      I'm also sorry that you think I picked through your blogs to find things to quote. I didn't. I was simply catching up on a few days of posts in Feedly, which included three posts from you. The difference in how you feel about those words coming from you and coming from a church, posts I read within minutes of each other, stood out to me. So, I asked about it.

      I do hear your heart. I agree that there's a need for families with special needs to attend church without drama or rejection.

      I'm actually really thankful you told me via FB that you weren't offended by by my questions, otherwise I'd have read an angry tone in your response here. That's always the downside to online communication - tone can be heard incorrectly.

      Perhaps this is a good time for me to clarify that my tone here is friendly, not irritated, and just cranking out a reply before I go tackle some other stuff. :)

      So, on that note, I'll leave my thoughts, experiences, and questions off the table and just step away from these conversations, both here and on FB, as I have no desire to add fuel to the fire. I sincerely hope you're all able to find churches that are good fits for your families! :)

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    3. I just don't get the words "we can't" This position upsets me so!

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  5. Let's just pretend that I said Shawn, not Sean, in my last comment. :)

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  6. Hello! I recently found your blog. I think what you are writing is so important and so powerful. I wish you all the best in being an agent of change in your church and community. I've been involved in finding ways to make my religious institutions more inclusive. In case you are interested, here's something I wrote recently:http://www.thejewishweek.com/.../sitting-alone-hallway...

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    1. Thank you for commenting! I loved your article, as well! The link didn't work for me and I had to search for it, but it was worth it. It is so hard to have to choose between what works for your child and your church community/family, isn't it? I wish you the best! Reposting the link in hopes it works for others: http://www.thejewishweek.com/blogs/new-normal/sitting-alone-hallway

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  7. I posted a reply that disappeared so I hope I don't repeat myself.

    I organize my Sunday School at our 250 member church. I have trouble just getting the basic number of teachers required to run a Sunday School much less to give us the Safe Church 2nd adult in the classroom.

    I have had 2 experiences with SN kids. I currently have a 4 year old girl who is autistic in my class. I was not given any information by the famly until AFTER she had been in my class several times. For a while, a teenager came with her to help out but now, she needs no special help. She is a participating member of my class who loves it.

    Years ago when I first started teaching and had no children myself, I had a class of 9 children (kind of a handful). A family who I had never met but seemed to know a lot of people dropped off a 5 year old girl and 8 year old DS son. No warning, no explanation of his condition (non-verbal), no offer to help out. He imitated every dangerous or naughty thing a kid did. After he stood on a chair with child safe scizzors, I hissed at my 5 year old class that they had better cut out the shenanigans immediately. That situation rattled me a bit. I think we could have accomodated the family had they returned but it would have required a volunteer. Obviously, some days a kid is not going to want to behave - I know this because EVERY kid has those days in Sunday School. Those days, they might have to go early or hang out with the coffee hour adults and stuff their faces with coffee cake.

    I am glad I read this. It gave me needed perspective. Again, hope this is not a duplicate post.

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  8. Tara, this is a great conversation; thank you! The crux of the matter is Galatians 6:2. "Bear one another's burdens, and so fulfill the law of Christ." The law of Christ is love. Bearing one another's burdens is what love looks like, and interestingly, it's how the world will know who Jesus' disciples are. "They will know you are my disciples by the love you have for one another." Speaking for myself, I cannot be judgmental of other Christians who don't get it, because I KNOW I didn't get it before we had our three with special needs. I myself have such a long way to go to learn to love like Jesus loves and I pray every day that He will grow His kind of love inside me.

    Signed,
    A mom who hasn't been to church since the beginning of the year other than Easter Sunday, and just this week initiated the process of getting a shift care nurse for Tommy for Sundays so we can fellowship with our church as a whole family again. :)

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  9. Thankfully we have found a perfect fit. I went to VBS with my daughter every day because I needed to, not because THEY needed me to. It's looking very promising.

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  10. Your kid is, ultimately, your responsibility. Kids on the spectrum are capable of learning & capable of being taught to behave like civilized human beings - you simply can't be bothered to teach your son. Or hire someone with the skills to teach him to behave in a non-feral manner.

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    1. First, the example was hypothetical, not an indictment of my actual child's behavior. But, thank you so much for your interest and advice on my parenting skills.
      Second, the church has no control over how children are parented and needs to be prepared to handle children AS THEY ARE, as Jesus instructed...feral or not.

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    2. Suzanne, you need to walk a mile in Tara's shoes before you go leaving a sanctimonious and clueless comment like that. As a mama who is in Tara's boat, I can tell you that you are wrong, dead wrong. All the time, money, & training in the world can't make some kids "behave in a civilized manner" for an hour and a half straight.

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