Thoughts Archives - Radioactive Elephant

Dear Church, I Don’t Need Your Special Needs Ministry

As a church volunteer over the years, I’ve seen the trends: youth ministry, singles ministry, recreation ministry, and most recently special needs ministry.

It sounds awesome, right? Let’s make our churches more inclusive. Let’s be more sensory friendly. Let’s educate our staff on developmental issues. All of these are great things and worthy of discussion in our churches.

But there I was as a “special needs” parent waiting.

Waiting for the church to change.

Waiting for my visit to a new church to be easy.

Waiting for MY needs to be met.

Just waiting for it not to be so hard.

We attend church on a semi regular basis. (I say semi regular because I chicken out on many days when staying home and resting is just easier. I love Jesus and his people, but… let’s be real here. )

We bring noise blocking headphones for worship, the same ones my son uses at school.

We go to a contemporary service, so a dark room, bright lights and loud music mean we sit near the back.

The Sunday school teachers are informed: there is a label on his name tag that says “Autistic. Prone to seizures.”

For the first time my son was able to attend VBS. It wasn’t easy. I volunteered so I could be close by and help with bathroom breaks. At one point, I broke out in a dead cold sweat from the anxiety. (Bathrooming a sensory kid in public is a challenge)

I skip church on days I know the schedule will be wonky or there won’t be childcare. (Many churches think kids over 4 should join their parents in corporate worship. Great in theory… but… not for my family.)

I leave as soon as the service dismisses or I sneak out the side to avoid the the large crowd gathered to fellowship. Even though my deepest desire is to join in the conversation, my kid pulls me to the car.

When will going to church not be so much work?” I wonder?

I’m caught in the tension between wanting the world to change to make my life easier, and pushing myself and my son to be self sufficient in a world that will never be easy.

I talked to our children’s minister before we started attending our current church. I’ve even been asked to be on a discussion group for special needs ministry by a dear friend who is a children’s minister at another local church.

What do you need,” they always ask?

A buddy for your son? A sensory box? Do you want to talk to the Sunday school teacher?

I don’t need programs. But well trained volunteers/buddies are awesome!

I don’t need a sensory friendly VBS track. Though they sound so cool!

I don’t need a special class. But dude, a support group would be amazing!

I don’t need sensory play boxes. My kid climbs me, rocks in my lap, and touches my hair. If you would like to volunteer to sit with my kid every once in awhile so I could focus, I would gladly accept.

What I do need:

I need relationships. I need a buddy, sometimes more than he does. I need someone to notice me and really ask me how it’s going and how they can help. I need someone to instead of saying, “Looks like you have your hands full.” To offer to walk with me and my kids to the car. I think if we trained our church staff and volunteers to invest in others, really go deep, we wouldn’t need programs. They would see the need and meet it. And special needs family are so unique, so diverse: each one has different needs. You would need to know each family individually.

I need trust. I need to trust the church so that I can be vulnerable enough to even ask for help or accept it when it is offered. Sometimes I still struggle telling people my son has special needs. He looks so typical on the outside to the untrained eye. This kind of trust only happens when we build relationships. I don’t think it’s too much to ask to purposely build relationships with those families in your church you know have struggles.

I need to serve. As counter intuitive as it sounds, it follows Christ’s example. But, I don’t need to serve my own child. I fell into this trap before. I was in the baby room because my child was. Then, I moved to the toddler room. Next, preschool. Babies are cute but make me anxious. My giftedness are preschoolers and middle schoolers. Crazy… but true. And now I’m leaning into women’s ministry. I need church to be my respite care. Where I can serve and grow in areas of my own God given giftedness.

I need to be understood. Maybe this falls under relationship, but it’s also unique. I have several friends, but I only have two or three I call or text when my kid does something unique to his situation that breaks my heart or wears me down. They never compare, or say it’s not that bad, They just say, I’m here for you. Understanding and empathy is hard. This is were training your staff, volunteers, heck the whole congregation, on Autism, ADHD, child development and similar needs would be extremely helpful. You know that kid bouncing the entire church service? He heard everything. He just processes information differently and this big loud room was a lot to take in. And you know how that kid seemed to be okay? After the big event, he kicked, screamed, and had a complete meltdown on the way home. He was overwhelmed and held it in as long as he could.

I need open and frequent conversations. I need to be checked up on. How did VBS go? How did Sunday school go? What was the hardest part? The best part?

I’m not waiting for the church to meet my needs. I’m showing up, even when it’s hard.

But sometimes the hardest things, those are the most beautiful.

At one point at VBS this summer, we attended the group worship and music session. I looked around and felt the tangible Spirit of God and his grace. It hung thick. The children and volunteers made a large circle, 200 plus, around the sanctuary. Most standing and holding hands. Shy of two boys in my group who wouldn’t hold hands, but danced beside me. Then, Two little girls who seemed too shy to join the group but sat joyfully signing. A boy with Downs Syndrome and his mom sat in the center. And my son, in the lap of his “buddy,” his headphones on, rocking to the beat. All of these singing or worshipping in their own way. That’s true inclusion. Not everyone doing the same thing in the same way. But everyone included, joined for the same purpose, each in their own way, bringing with them their own giftedness. No one even saw the tears in my eyes.

That day was beautiful, but many are still rather hard.

Dear Church, I don’t need your special needs ministry, but I really want the relationship.

I wrote this openly to the Christian church, and not an individual church. I feel if the Church embraces relationships over programs there will not be a need for “special needs” ministry. In fact, the needs of an entire congregation will be met together: the single mom, the widow, the big family, the college single and more. All the sensory boxes in your foyer won’t get me to stay if I don’t have a relationship with the people of the church.

As resources for special needs and general encouragement, I follow:

https://www.keyministry.org/

Key Ministry promotes meaningful connection between churches and families of kids with disabilities for the purpose of making disciples of Jesus Christ. Their blog posts are encouraging for both church leaders and special needs families.

@sandrapeoples

A special needs family encourager and author. Church leader and mom of two cool boys, one with Autism.

@theluckyfewofficial

Author and public figure: Down syndrome and adoption are her jam. The pictures of her kids will brighten anyone’s day.

@lifewithgraysonandparker & www.lifewithgrayson.com

Mom of two amazing boys with Autism. Seeks to find beauty in everyday life. Advocate for inclusion.

Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month’s Voices of Special Needs Hop? Click here!

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Living Letters

I don’t remember exactly who said it, but growing up I was told, “You might be the only Bible someone ever reads.” The idea was that your actions, your testimony when you claim to be a follower of Christ might be the only representation of Christ someone ever hears. They may never actually pick up the Bible and read it, but they see how you live your life.

That made sense to me. It’s the culture we live in: relationship and authenticity are paramount.

As I was doing my summer Bible study through She Reads Truth: Corinthians, I stumbled apon a verse I had either never read or never read well enough to remember it.

“Are we beginning to commend ourselves again? Or do we need, as some do, letters of recommendation to you, or from you? You yourselves are our letter of recommendation, written on our hearts, to be known and read by all. And you show that you are a letter from Christ delivered by us, written not with ink but with the Spirit of the living God, not on tablets of stone but on tablets of human hearts.”

‭‭2 Corinthians‬ ‭3:1-3‬ ‭ESV‬‬

I don’t know if it’s because I teach English and enjoy writing, but this verse felt tangible.

You are Christ’s letter, delivered.

Not written with ink but with the Spirit of the living God –

Not on tablets of stone but on tablets of the human heart.

The contrast between the cold hard stone and the life giving, warmth of the human heart reminded me of similar contrast between the cold, ridged, old law of Moses and the warmth of forgiveness and redemption that Jesus brought.

Then, I went back to the first part:

You yourselves are our letter, written on our hearts, known and read by everyone.

She Reads Truth referenced this as being similar to our use of a letter of recommendation. Something that was used during this time period when going to a new town, or new church. While Paul is talking about the Church at Corinth, my thoughts were drawn to my own reflection.

Am I accurately reflecting Christ in my daily life? Do I daily radiate the warmth of redemption? Does my digital life flow from the Spirit of the living God or the spirit of materialism, consumerism and division? If someone who never read the Bible saw me, would they even think Christ was worth following? What recommendation do I give to Christ and His Church? Am I living by the letter of the law which brings death or through the Spirit that gives life?

“Such is the confidence that we have through Christ toward God. Not that we are sufficient in ourselves to claim anything as coming from us, but our sufficiency is from God, who has made us sufficient to be ministers of a new covenant, not of the letter but of the Spirit. For the letter kills, but the Spirit gives life.”

‭‭2 Corinthians‬ ‭3:4-6‬ ‭ESV‬‬

But our sufficiency is from God, who has made us sufficient to be ministers of a new covenant,

Not of the letter but of the Spirit…

The Spirit gives life.

“I have come so they can have life. I want them to have it in the fullest possible way.”

‭‭John‬ ‭10:10‬ ‭NIRV‬‬

Were you inspired by this verse? Have you ever thought of Bible journaling? Join my friend, Michelle, from Straw-Bearie Designs as she adds a beautiful design to her Bible. Watch her YouTube video as she gives you step by step instructions of her journaling technique.

Learning to Walk

Two weeks ago, on our “snow day”, Em took her first independent steps. Now, she is walking everywhere!

Watching her learn to walk was the most beautiful thing. Watching her slowly let go of her fear, and the cabinet she was holding on to to steady herself, and taking her first few steps. Then, once she realized she could do it… she did it again and again. She laughed; we clapped and cheered.

There is so much joy in learning new things. Going from frustration and tears, to laughter and handclaps. To go from saying “I can’t” and “This is too hard.” To repeating your new learned skill over and over.

As an adult, I get stuck in the “I can’t even” phase too often. However, the hardest seasons in life, often bring so much growth. But if we can remember that image of sheer joy that can follow, that “look at me” type joy, perhaps we can press on. Perhaps the hard part will strengthen us, help us grow, and leave us dancing with joy.

“Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.”

James 1:2-4 NLT

What are you or your family working toward? Are you still in the hard part? What fear are you holding on to? Are you ready to let go? Or are you on the other side and ready to be greeted by a cheering section?

My Fixer Upper: From A Child’s Perspective

I really like home improvement shows. Even before I owned a home, I watched them and daydreamed. Color Splash, Property Brothers, Rehab Addict, Design on a Dime, and of course Fixer Upper.

8 or so years ago, my husband and I bought our own “fixer upper” on our shoestring budget. We quickly replaced the roof, painted every room, repaired a fence, updated the some plumbing, and some of the electrical. We finished a partially converted and unfinished garage and turned into an office. Guys, I can tape, float and texture like a pro. Then, we went a little house broke.

We started a kitchen update right before our first baby was born. An even tighter budget meant we didn’t get granite countertops, just a nice laminate. I hand sanded and painted the existing kitchen cabinets at 6 months pregnant. I had a serious nesting phase. And of course, we choose a cheaper flooring option than we would have desired.

After our son was born, we still had a few other projects but the took a back seat to the baby. I don’t think I did a thing until I started getting more sleep… around 15 months later!

A couple of summers ago, I did a DIY floor treatment. It was lots of work, looked beautiful, and didn’t break the bank. But it won’t hold up in the long run.

Now, when I see my house… I still see all our unfinished projects. The spot that still needs trim added, the flooring that is cracking and needs to be resealed, the unfinished guest bathroom, the windows that need to be updated, and the leak in the bathroom, while fixed, left sheetrock in need of replacement.

My husband still daydreams about tearing down walls and switching up the layout. He’s a designer and dreamer.

This Christmas I wanted to have family over and host Christmas. Between baby number two’s early arrival and our unfinished projects, my husband had a stern “NO!” He didn’t want to clean or make our house presentable. I understood. We were both pretty tired.

But I think we have a constant fear of our house not being finished, not being good enough, and not being clean enough. We don’t have friends over very often unless they are really close friends.

I see all my house’s faults… Our 5 year old doesn’t.

This is my favorite place.”

“Did you build this house for me? I love our house.”

“I love your bed. It’s cozy”

“I love my big giant bed. You built it for me.”

(Thanks IKEA for making us look like super heroes)

“I love my room. I love my planets and all my stars.

(I hot glued planets and glow in the dark stars to his bed)

And… “I’m ready to go home.”

This boy doesn’t see our house’s faults or the dirt on the floor. He sees the vibrant colors and personal touches.
He doesn’t mind sharing a bathroom with his parents. In fact, he enjoys it.
He doesn’t see unfinished projects.
He sees the room where he reads each night with his parents.
He sees his art hung on the walls.
He sees safety, security, and comfort.
He sees our home from his own perspective and loves it.

I’m challenging myself to see it in that same way. I want to see the hearth of my home, and not my to do list.

House maintenance is real and important thing. I’m not excusing our laziness, but I am allowing a little grace. And let the real beauty of my home to shine through: faith in the Spirit of The Living God, and the humans who live and dwell here. I want to see the blessings of my security, not a comparison of wealth.

So while I’m in this season of holding babies and no free time or free hands, I want to see my home from a child like perspective. I want this to be my favorite place, cracked flooring and all.

How Does Your Garden Grow? Seeing Beyond the Tangled Mess

One of my neighbors has a neat and tidy row garden. Another has a well planned and abundant secret garden of plants and pathways. My garden… well.. I think it started out as companion gardening, planting helpful and supportive plants together. Now, it’s basically a “Let’s toss some seeds and see if it grows there” type of garden.

After an eventful year, where garden tending was my least priority, my garden has taken on a life of itself. My tomato plants reseeded themselves in places, my herbs are growing untamed, and the three tomato and pepper plants I added are abundant.

There are spots that need to be pruned back, weeds that need to be pulled and some plants that really should stay in their designated area!

This morning, I had to craw over a bush to pick tomatoes. If I don’t trim back the bush, soon there will be fruit growing beyond my reach.

As abundant as my garden is now, I’m reminded that it’s not my green thumb keeping it going. God’s providence is displayed in nature’s bounty.

“That is why I tell you not to worry about everyday life—whether you have enough food and drink, or enough clothes to wear. Isn’t life more than food, and your body more than clothing? Look at the birds. They don’t plant or harvest or store food in barns, for your heavenly Father feeds them. And aren’t you far more valuable to him than they are? Can all your worries add a single moment to your life?

“And why worry about your clothing? Look at the lilies of the field and how they grow. They don’t work or make their clothing, yet Solomon in all his glory was not dressed as beautifully as they are. And if God cares so wonderfully for wildflowers that are here today and thrown into the fire tomorrow, he will certainly care for you. Why do you have so little faith?

“So don’t worry about these things, saying, ‘What will we eat? What will we drink? What will we wear?’ These things dominate the thoughts of unbelievers, but your heavenly Father already knows all your needs. Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need.

“So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today. – Jesus, as recorded in Matthew 6:25-34

I can tend my garden: prune limbs, water, add nutrients to the soil, deter pests, strategically group plants, scatter seeds. But in the end, I’m not in control. The vines grow where they wish, dying plants will leave seeds that sprout, and the Texas weather will do as it pleases.

In the same way I’m not in control of my garden, I’m not in total control of my life. And that’s a hard notion to swallow.

I like having my life in order, plans made, schedules and such. This helps me feel in control. I feel like I should be a row gardener.

In the quiet of my morning walk through my garden, I realized how much trying to control certain areas in my life has been making me crazy and resentful. I’ve become envious of my neighbor’s “row gardening” lives. I’ve been striving for things, while good, are beyond my current reach. I do have places I need to tend to, places where I need to pull weeds and prune the back the overgrowth, but I need to loosen my grip in a few areas of my life.

I love my messy, overgrown, “companion” garden. And if I’m honest, I love my messy, “never in a row” life. Even the thorny parts. It’s just hard sometimes.

And really, if I had it all together, I wouldn’t be outside in my garden in my PJs. I wouldn’t be lifting a tiny “Darth Vader”, who is wearing mix matched PJ’s that are two sizes too small, into an overgrown tomato garden. And this morning, I see this picture in all it’s “not in a row” glory.

Abundance in a tangled mess

Beauty in the imperfections

Joy in the unexpected

Hope among the thorns

Peace in the quiet moments

So I ask, how does your garden grow?

(I wrote this a month ago and I’m just now getting around to publishing it. Please note that with August approaching every plant is near death. Even my neighbor’s gardens. And, I have had my fill of tomatoes this season! My metaphorical garden, however, is still thriving as both messy and beautiful. )

Patience is a Virtue

Okay I hear that a lot. I get told I have plenty of patience. I’m not sure if that’s because I’m a middle school teacher or because I have a unique 4 year old. Either way, it got me thinking.

I don’t think I have a plethora of patience. In fact, I get annoyed, angry and irritated with the best of them.
I once had someone tell me I was the perfect parent for my son. That God knew I could handle it. (Insert laughter) It was very sweet, and perhaps even true. I do think he is the best, funniest, quirkiest kid ever. However, I’m biased. But was he born to me simply because I was blessed with patience? Because I could handle the tough moments?

You ever hear the saying that if you pray for patience that God gives you a situation that requires a NEED for patience. It’s a funny saying, but I can’t recall actually seeing that in the Bible.
And then there is the “God won’t give you more than you can handle” quote. If that were true, only good, strong people would be put in tough situations. And that doesn’t seem fair. If that were true, the blame falls on me when I feel overwhelmed, when I can’t handle it. Depression, loss, grief, become things we should be able to handle. Otherwise, are we not failing God? He thought we could “handle” it. This is simply not true. We are human, we have limits, we can be broken.

The other weekend, I was taking a nap. I had a slight fever and my husband offered to play with our son, X, and let me sleep. I was in and out, but I remember waking to hear them playing with Legos. X literally said the same line, “Can I put the block here” repeatedly for 30 plus times with only a slight variation. My husband replied calmly, tried to engage in actual conversation, and just played with him. We joke that he gets “stuck on repeat” sometimes. They played for two hours. Sometimes it’s precious, and for a moment I think, “Yes, we do have a lot of patience.”

Other times it’s annoying. Like when we are trying to load up into the car and I answer the same question over, and over, and over. And there are plenty more times when our response is where beauty shines through.

We are not patient because we are born that way.

We are not patient because we are excellent parents.

We are not patient because we are good people.

We are patient because we have learned to be.

We are patient because we love our child.

We are patient because we love our God.

“Love is patient and kind. Love is not jealous or boastful or proud or rude. It does not demand its own way. It is not irritable, and it keeps no record of being wronged. It does not rejoice about injustice but rejoices whenever the truth wins out. Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.”

‭‭1 Corinthians‬ ‭13:4-7‬ ‭NLT‬‬

We get overwhelmed, frustrated, annoyed, and angry. There are times when it is too much. When our situation becomes too much for us to handle. That is our humanity.

That’s is when we need others.

That’s is when we need God.

That’s is when we need love.

Love is our calling to be more like God, more like Christ himself. Despite our situation. In comfort or hardship.
Love, patience, kindness, goodness, faithfulness, self control … These are what we hope to achieve. What we are continually striving for.

Patience isn’t so much a virtue, or gift, but rather a skill that must be learned and practiced. At its very best, it is a quality that reflects the very nature and heart of God himself.

But I swear… I wasn’t just born this way!