When the young woman flashed me a friendly smile and asked, “How are you?” my involuntary shrug and the words “I’ve been better,” tumbled out before I could stop myself. I could have sworn I meant to offer her the obligatory “Fine,” followed by my typical Sunday greeting smile. My veneer, however, had worn too thin to hide the stress of another morning battle with my son with autism, the young man sitting alone at a back table, head in hands. And I wondered, was I the only one feeling like the worst excuse for a parent ever?
I could feel the tears coming and made a quick exit for the nearest bathroom to keep my mascara in its place and to pray for God’s intervention in a situation I didn’t know how to fix. By the time I emerged, my son was gone. Thankfully, my husband had prompted a friend to invite him to help them cook burgers on the grill for the afternoon’s picnic. It worked. The morning was salvaged, but not the over-all problem that repeated itself every Sunday morning like clockwork.
Over the years we have struggled, not unlike other families, with or without autism, to find ways to help our son connect with God and connect with the church. But when dealing with extreme social anxiety, traditional models for discipleship and worship simply don’t work. That night we sat our son down to talk about options. He offered a compromise: attend a smaller discipleship group each week in place of the large Sunday worship gathering to escape the noise and the obligatory small talk he hated so much. Desperate times call for desperate measures. We have agreed to try it.
Often, however, the challenges my family face aren’t so different than challenges in families without disability but for the fact that our needs are more apparent. And in recognizing our needs more easily or having to admit our needs more openly, many times it may reveal something others may need but won’t admit to, or don’t realize is missing until they are confronted by those needs in another.
In the case of my son’s recent experience, his discomfort at church revealed what many of us look like we have, but actually long for: authentic, spiritual community, where discipleship born out of relationship leads to transparent, open-hearted worship.
Some have found it, praise God. Others, like me and my family, are still trying to machete a path through the status-quo jungle to find it or create it. But the blessing is this: I would never have seen our need so clearly had my son’s struggle not forced us out of our complacency. Contrary to the assumption of many, those with special needs in the Church are not just another demographic to serve or plug into a program; they are among those God has gifted with the special ability to reveal what all of us need and are called to manifest to a hurting world: a loving community.
Question: What has helped you and your special needs family experience community where spiritual growth, relationship and worship can take place?
–Kelli Ra Anderson, author of Divine Duct Tape and soon-to-be-released Life on the Spectrum
Latest posts by Kelli Ra Anderson (see all)
- Calming our Anxiety in Special Needs Parenting - August 24, 2015
- Victory in the Seeming Loss of Special Needs Advocacy - June 22, 2015
- Retreating in God’s Hands: respite for the special needs parent - May 25, 2015
Thanks for this post! I am a mom of a child with high functioning autism (and i also have more than a little social anxiety myself); and i get frustrated with the sensory nightmare that is a church service. My child often ends up under the bench if i insist that he stay in the sanctuary. Could I insist that he sit on the bench like a normal person? Yes. But why? I understand how he feels and how hard it can be to sit still in a pew with people all around.
I feel like i would be taking the easy way out to only go to Sunday School…but that is where my son and i do the best, because of the smaller setting. My older kids and husband do enjoy church and i feel like i “should” go to church as well, for their sakes. And I also feel like I am not being fair to be frustrated…no church can meet all the needs of all the people. God has taken care of us thus far…whether or not our church can meet our needs, God will provide a way for us to learn about Him and to have friends. But it is an isolating feeling to try to fit in to a church community, but have an ongoing social anxiety and the struggles that go with HFA…there is this concept in our churches that above all else (except our relationship with God, of course) are our relationships with other people, especially other Christians. How does someone with social anxiety interact in this sphere? It is so hard, yet those of us with these issues need and want friends too.
God has blessed us with another family in church who shares similar struggles with us, and a Sunday School teacher who emphasizes the teaching of the Word rather than the social aspect of Sunday School–i can concentrate on what we are studying rather than the people sitting with me. That helps a lot. I wish this were the normal thing in our churches instead of the huge emphasis on “fellowship.” 🙂
I think, for those of us in the sphere of autism (this would not apply to all special needs families of course), maybe it at least partly comes down to the fact that our churches are, by and large, not planned around what attracts the intellectual and “nerd-y” people, which to varying degrees describes myself, my husband (that is why we get along so well) and all my kids (well, it would–we raised them)–especially my HFA son. I have tried to explain this concept to our pastor’s wife, who is a good person but highly social. She listens, but doesn’t get it–i don’t think innately social people (who usually gravitate toward leadership positions in a church) can easily understand the way less-than-socially-adept people think, act, and react. And I don’t know how to explain to those who don’t understand. I (and my fellow nerds–i use the term with much respect and affection) fellowship better when i study with someone or engage in other nerd-friendly activities. Lol. 🙂
Sadly, I am one of the ones that have given up on even trying to go to church. It was way too hard and I was asked to tend to my son else where, there was no interest shown from anyone to even try to get to know me or understand. folks just too quick to judge and expect me to keep ‘him’ quiet. the camaraderie and support is something I miss, and my heart aches, as I feel I failed to teach my son well. I do seek out online and radio study. I keep thinking I will try once again but then discouragement hits me, and I would probably just go to church alone and not be very open to getting to know others. Well there is hope as I know whom I have believed. If people were more honest we would find there is not lots different from us, my life is rather more loud and unpredictable with ASD. I have grown to press into the Lord more than I may have thought at the beginning of this life with my son. Thanks for the post. I know I am much more kind-hearted with other people knowing they face challenges I may not want to trade for.
I don’t have any answers but am looking forward to what others have found works. Yesterday I left church feeling more discouraged and frustrated and hurt for my son. I found myself in the pit of depression wondering why we even keep trying. Frustrated that church should be the place to find comfort and community yet each week I walk away feeling nothing but lonely.
Dear Kelli!
First of all, I want to thank you for the beauty of your candor, and the picture you have painted for myself, and all who have read, or will read, this article. I honor your love for the Lord, and your love for your son. I also honor your listening ear to hear how God is speaking through a child so profoundly, and allowing yourself to become awakened to more than just his words. If I may say… you are actually being awakened to a movement birthed by Father God, Himself!
Your heart-speak, above, touches the heart of what Father God is doing, in realigning the Church in North America, and indeed, all around the world, in pockets here and there. It is a move of the Father to return His people FROM the captivity of man made [we need more bricks!] systems back TO the One and only Cornerstone; Christ Himself [Jesus, Head of the Church]. In this merciful move of the Father, He will do (and is doing) for us what we could not do for ourselves. He is teaching us how to live life again, in community, as it was at the birth of the NT church. Those, like myself, who have known the Lord for many years, are feeling like we’re back at “square one.” The Lord is peeling back the scales from our eyes to see that ‘church as we’ve known it’ is hindering us from having what Jesus Christ paid with His blood to give us – – – relationship with the Father, being led by the Holy Spirit, in community with other believers, growing in the love of God, the crowning grace. And, from the place of fervent love for Him and one another, His intent was that we become warm incubators of love for babies to come into the Kingdom!
In this move of God the Father, preparing the Bride for His Son, He is collecting the ‘living stones’ that have been scattered, and bringing them back together into their proper places, fitly joined in Him.
AMEN to your continuance to ‘machete past’ the status quo jungle. Reminds me, a little, of what Israel must have felt when they had been in the wilderness so long and now, with a new generation of people, were heading into a land – a land filled with giants. But these people knew enough about Egypt and brick building to know that, whatever lay ahead, they didn’t want to go back to that system. They chose rather, to face the giants ahead, having to trust in God’s power to deliver them, than to place themselves under the bondage of systems and people who told them who they were, what they could and couldn’t do, and sought to oppress or kill their offspring.
And, just as an aside… we’re all special needs children.
God’s grace and peace and strength to you, as you
forge ahead into God’s victorious future for you,
with the love of Jesus,
Karen Peterson
DONNA, I hear you. I have been there and, as my blog post confesses, sometimes I am there still! But I don’t think we are alone. And we can’t give up. God does not give up on us; we must keep praying with eyes open for where God may lead us in the effort not only to help our own precious children, but those of others lost in this maze of the Church. So many others, even without disability, go through the motions but their hearts are lonely, too. Disability just makes it more apparent for families like ours. But that said, there are those trying to help. One of my friends, Steve Grcevich of Key Ministry has started an online church meant to connect us to our local churches but in a way we might find less painful to connect to others like ourselves. I haven’t explored it thoroughly yet, but I know Steve, and I am intrigued by his recognition of our problems and his creativity in trying to address it. His web address where you can find out more about this online community, The Front Door, is at: http://drgrcevich.wordpress.com/category/the-front-door-online-church-from-key-ministry/ Blessings to you, sister. :0) Kelli
And to KAREN, let me say thank you, thank you for your kind encouragement and for putting a smile on my face!! I think you are so right. I am reading, listening and seeing others in books, on the internet and podcast who all seem to be leading us toward a greater recognition for our need for authentic (I know, that word is often overused!) community that loves like Christ. To get past our formulas and corporate-business-type models of the Church. Dallas Willard’s name seems to come up often from those espousing this much-needed change. Funny how we can be thousands of years along in the life of the Church and still have to keep learning such fundamental things…! No wonder God calls us children :0) I’m just forever grateful He never gives up on us. Thank you, too, for that reminder. You were a real blessing to me! –In Christ’s love , Kelli