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. 

What Is The Church To Do?

A blogger friend of mine posted a letter she received from her church informing her of the new policy in the children's ministry department and how it will affect her family. Her daughter with special needs will now be required to attend with a 1:1 parent or other adult caregiver that the family provides. My friend is reeling. 

I felt sick when I read it and my heart was broken for her and her daughter, but also for the church that is so missing the opportunity to be the hands and feet of Jesus. 

I, and so many others, shared the post on Facebook and there has been a firestorm of comments from the special needs community sharing my disgust and dismay.

But it was this comment from a friend with neuro-typical children that prompted this post:

Tara, what would you suggest churches do? How should they handle special needs children, especially knowing that volunteers are hard to come by in any form, much less those that are able to handle special needs? I think asking a parent to come to class with their child is acceptable, but clearly others don't. What are the alternatives?

Excellent questions! I want to address all of them.

But first, I want to give a picture of what life can look like when it involves special needs. 

Families who have a child with special needs are often in crisis. Medical issues can be chronic and exhausting, but often they come on suddenly requiring emergency hospitalizations or testing and sending the household into a tailspin. Even without medical fragility, kids with special needs can have different behavioral issues that leave parents chronically stressed and sometimes with little hope. 

I wrote about the ramping up of behaviors of our little guy in a recent post here and the effects on my psyche and our family. I left out a lot of detail and failed to describe adequately the complete drain on my coping skills, our resources, and the overall toll it took on our family. We are on the right track now and seeking better supports which have infused us with new hope, but I would be a fool to think that we will be crisis-free in the future. 

Parents of kids with special needs are also lacking in restful sleep. Some kids have sleep disorders and require very little sleep (ours does), some need middle of the night meds or feedings, and sometimes the intense worry and anxiety of protecting and caring for our children can keep us awake. 

My point is, often times, we parents are shredded. We are at the end of our proverbial ropes and hanging on by a thread. If we make it out the door to church at all, it is a major coup. 

A typical Sunday for me recently included cleaning up my son who had removed his diaper, pooped on my carpet, and then painted himself from head to toe with the resulting mess, which of course, prompted a necessary change of clothes for me, as well. If I knew I then had to care for him when I got to church, why would I even bother leaving the house? The truth is, I don't. 

By writing that letter, this church is not really asking the family to provide an aide for their daughter, they are asking them to stay home.  

Which brings me to my next point, written so much better by my fellow parents in their comments about this on Facebook:

Dear church -- please serve and love your families who have children with special needs. They need you -- and really, you need them. There is so much to be gained and learned from those relationships. If you have a huge budget for missions, etc. yet are basically turning away families in your own community, what kind of message does that send? A mission field in your own back yard...  - Lisa Mai Olsen

It gets very interesting when you think about the church being very vocally pro-life --- then shouldn't they be the first ones to embrace and include everyone? - Lisa Mai Olsen

But really, the disappointment for me comes in the fact that the Church is supposed to be the hands feet and heart of Jesus. I have adjusted to the disappointment that comes with the public school system....but God's people are supposed to be different. - Yvette Kelder Bilello

Soo... parents coming to church must be prepared to watch their own child? Why not just send out a note "kindly" requesting families to just stay home and hide their child(ren) from view lest they get in the way. What happened to "Suffer the little children... forbid them not"? Hmmm... - Krista Dunn LaRocque 

This is why I am so passionate about the church embracing disability. This is why it is so important that we teach that all of us, every single one of us, is an important part of the body of Christ. Wonder why special needs families don't attend church? ALL kids are worth investing in, everyone has something to contribute. This breaks my heart! - Ellen Stumbo

Valid points, all of them. We can do better. We should do better. 

What has worked in many churches is the "Buddy Program" in which children with special needs are assigned a person to accompany them to class. That person is specially trained on that child's needs and gets to know them. They can support that child however they need to get the most out of the class. Some churches even have an "individualized spiritual plan" for each child to ensure their spiritual needs are met. 

Some churches have sensory rooms in which children who are experiencing sensory overload can be calmed. Ellen Stumbo has a great post about how her little church is building one, and why, here. 

Sometimes just having a room where a parent can take a child and still hear or view the sermon can be huge. 

Now, as for the question of volunteers. I get it. I am a pastor's daughter. I know that finding church workers is so difficult, especially in small to mid-size churches. 

But I also know that when the heart of a church is worship, there is usually no shortage of willing musicians. When it is missions, the missions budget can surpass that of a much larger church. When a church emphasizes meeting the needs of the poor, the food pantry flourishes. 

We have got to start making these families a priority. 

As my friend, Ellen, so eloquently puts it, "Ultimately, it's not about the ministry; it is about the willingness and the hearts of acceptance." We know when a church is trying. We don't need perfection. We just want to be welcomed and for you to be willing to help us find a way to belong. 

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. Bo has a lot to offer in his unique package. We have grown so much from knowing and loving this little boy. We just want a church to see beyond the behavior to the gift. We want him to be wanted and welcomed. 

A friend of a friend shared this story in response to the letter. I cried when I read it. I would be undone with gratitude if someone responded to and accepted my Bo this way: 

This is heartbreaking. Our new piano teacher is part of a church with a passion for providing ministry to families with kids with special needs. We started going there and when I said I felt bad that Peter had spit on and slapped his assigned helper in kid's church, she responded that Jesus was spit on and far worse, so they guessed it would be just fine. THAT is what Jesus is looking for in His church body. NOT what is represented in this letter. - Jennifer Loque 

Indeed. 

(I wrote a follow-up post to this one, in which I disagreed with something I said here and further expounded on some other ideas. Check it out.)

Trapped in Church

It's rarely easy to try something new. Dragging seven kids with you is usually less of a treat, so my expectations in trying out a new church this morning were blissfully low. 

No matter how prepared I think I am, something invariably surprises me every time we leave the house as a family. (Did I ever tell you about the time we drove forty-five minutes to the state fair only to discover the eight-year-old wasn't wearing any shoes? How do you forget to wear shoes?!? Sigh.) 

I had done my homework on this church. I'd called ahead and found that there isn't any special needs programming or anything for Bo, but Shawn and I had decided we could take turns walking the lobby with him, if needed. I'd sent Shawn to scout it out with the older girls one Sunday to see if it was worth a return visit and, more importantly, to get our family in the computer system for easier drop off/pick up from kids' classes without actually having all the kids with us for that tedium. 

Other than a few snafus like realizing the third time I brushed it, just as we were leaving, that KJ's hair wasn't damp; it was greasy. Ew! When was she bathed last? Oh, wait, that's why she was telling me hair mousse and lotion were almost the same. Perfect. 

After we made it inside, an old friend found me looking lost and mercifully helped me check the kids in and get them to their classes. 

And then we entered the auditorium. The very full auditorium. We needed four seats. I couldn't even find two. I was starting to panic thinking we would need to go back and get the kids out of the classes and go home. We stood there in the back for several minutes while everyone sat down after the first song. 

Finally, half way up on the left, I spotted four seats. We just had to climb over a few people to get to them. Once we got there, we saw the walker and realized that the elderly lady on the inside could barely stand to let us through. She and the people with her graciously motioned us in, however. Shawn and the kids admitted later that they'd knocked her back into her seat behind me trying to squeeze in. Oh dear. 

Bo did pretty well during the music. He likes music and flirted with the ladies behind us with big smiles and high fives. 

It wasn't until the sermon did we realize how trapped we were. 

Looking around, it was obvious that ours was the narrowest aisle in the whole church, which is probably why it still had available seats. Shawn was sitting closest to the elderly lady and clearly could not climb over her again. There was an entire row of people my way and no room to climb over them. I also know from experience that when I walk by seated people while carrying Bo, their heads are the perfect height for kicking. 

In my initial panic, I worried that I didn't bring any toys. Then I smiled to myself and realized I'm so much more competent than I give myself credit for. I don't bring toys to church for Bo because they quickly turn into projectile missiles. My little guy has an excellent throwing arm. 

He sat on Shawn's lap for awhile before becoming noticeably "restless". I offered my lap and he happily complied. We played a game of mimed patty cake, catching his nose, biting his pumpkin, and tickling his belly which turned into a game of keep away...as in keep the long flowing hair of the lady in front of us out of the hands of Bo. I won, by the way, but it was a close game. 

She had no idea she was even a participant. Unlike the poor guy in front of Shawn who we think became annoyed at being touched on the arm a time or two. Sorry, buddy, but you took one for the team. You are the hero that kept a fellow church member in your row from being snatched bald! Now, don't you feel silly for throwing us that dirty look?

In the end, we made it through no worse for the wear (just an extra bruise or two) and we're pretty proud of him. It was a long time to be in such close proximity with all those people. He didn't make any noise, he kept his shoes on, and he still smiled at a few pretty girls when it was over. 

I'm proud of us, too. We actually managed to listen to some of the sermon, I didn't have a complete panic attack, and I didn't fall all over myself apologizing for him to everyone around us at the end. 

Next time, one of the teens will go ahead to reserve us seats on the end in the back row. 

And I'll put the mousse in KJ's hair after her bath.

At the Edge of the Parenting Abyss

"Standing at the edge of a cliff, dodging objects sailing through the air that would knock me into the abyss," would be the honest answer when asked how I am. Instead, I smile brightly and give a cheery, "Just fine, and you?"

No one really wants to hear the truth and frankly, who has the time? We're all so busy running to and fro just trying to keep up. If someone did stop and really ask, I'd just burst into tears anyway. 

Things are not okay, actually. 

This sweet, wonderful, chosen child of mine is really a bit of a terror. 

We are out of our parenting depths. Behaviors are increasing. Throwing, pinching, hitting, spitting, biting are becoming the norm, not the exception. The randomness of the attacks are disconcerting and alarming to say the least, leaving us all on edge, but the assaults are constant. This is the text from Shawn this morning when we were checking in with each other:

I cringe to see my youngest cower when she sees her brother holding a solid object, rightly suspecting she's the likely target. I hear my older children mirror my own frustration after getting pinched for the hundredth time. 

I'm saddened to see this bright little boy retreat somewhere into himself in attempt to cope with the overwhelming world around him. I hate to see the confusion that crosses his face when someone reacts in anger after he hurts them. 

Worse, I hate to see his huge grin and hear his laughter when someone cries as a result of the pain he's inflicted. I'm at a loss as to how to respond to that. How do you explain to a five-year-old that his little brother didn't mean to hurt him and is not really laughing at him...when it sure looks like he did and is? 

Due to his wandering tendencies, we are constantly on alert, fearing that someone will forget and leave a door ajar or a gate open. Because of the kids playing outside all the time in the warm summer months, we are already becoming immune to the sound of the door alarms. 

I would like to say that it's just a matter of time before he takes advantage of an open door and wanders away but, unfortunately, it's already occurred. That is a terror no parent wants to experience. While he was returned to us safe, the nightmares of a much different outcome have continued almost nightly and peaceful sleep eludes me.

The constant anxiety with an occasional burst of adrenaline due to a flying object is taking a toll. 

We love this little guy. Some of these behaviors are actually developmentally appropriate. He came home at three-and-a-half-years-old acting very much the infant. Now, at almost five, he more closely resembles a defiant toddler, which shows he is making progress. Which is wonderful (if exhausting for us)! We are so proud of him! 

But there is a definite neurological component which has always been present, but is becoming unmanageable with our current bag of tricks. We decided initially, while we suspected autism, that we would not pursue a dual diagnosis of Down syndrome and ASD (autism spectrum disorder) because he was already getting therapies and developmental preschool and it really wouldn't change anything. 

However, as behaviors have increased and it is clear we are out of our league, we have scheduled an autism evaluation for him the end of this month. We have discovered that there are more services available to him if he actually has the ASD diagnosis, as well as more support for us. We want to help him as much as possible and we want as many tools in our belt as we can get. 

We also ordered this gps tracking device which allows us to establish a perimeter and, if he breaches it, will send alerts to our phones. If he should ever become lost, we can find him via gps, as well. Given there is a special tool needed to remove the device from his wrist, we're hopeful our little houdini boy can't escape it, but we'll see. 

In all honesty, it's tempting to feel like a big fat parenting failure. Pride has a way of making you feel like you should be able to figure it out and accuses...

• If you researched hard enough, you would be able to find the answers on your own.
• If you were patient enough, you wouldn't get frustrated.
• If you were paying close enough attention, you wouldn't have lost your own child.
• If you were enough, none of this would be happening.

The truth is none of us is enough. Sometimes this special needs road is hard and we need help. I'm so thankful for the fellow parents on this journey who have been willing to share the ugly. Without them, I would be much less willing to have grace for myself and would be tempted to wallow in guilt and sink into the abyss in which I'm dangerously close to falling (Not that there hasn't been some guilt-wallowing, mind you.)

We feel hopeful that we are moving in the right direction to make positive changes that will benefit all of us to decrease stress, bring more peace, and help us take the best care of our precious Serb. 

Time will tell.