I do something unglamorous.
And honestly, I love every minute of it.
At my church, I am part of a program that works to provides aide and help for kids with disabilities, while also creating a safe and inclusive space for them to learn and grow. I have been a part of this group for at least three years. And for the duration of those years, I have been a one-on-one to a little girl with Down Syndrome. (I will be calling her PG throughout this post, as PG stands for “pretty girl”, which is my nickname for her.)
When I started with her, I had little to no experience working with kids with special needs. I had babysat a group of kids several times prior, with one of the children being on the Autism Spectrum, but that was it. PG used mostly ASL, had poor use of words, used braces on her feet, and was honestly a challenge for me when I started. She will be in first grade this coming school year, and my goodness, how she was grown. She uses little to no sign, her word usage is incredible, she can write her name and her hand writing is beautiful, and her manners are improving everyday.
Working with kids with special needs is a very unglamorous job. My hands, arms, and sometimes my legs, have been covered in marker. My clothes sometimes get covered in drool and bits of chewed food. Most recently, I had a white shirt get covered in Oreo slobber. I have had my hair pulled, my fingers bent back the wrong way, and I’ve been pinched and kicked. I have even had things thrown at me, or I’ve had to block things that were thrown. I have been (very unintentionally) choked, and at times I become a human jungle gym. There was a period of time where PG liked to bang her head against my chest, if she was sitting in my lap. And more often than not, working with kids with special needs is a full contact sport. There are a few kids at my church that don’t like touch, but the vast majority of kids in the program do. And more often than not, physical touch is used help restrain. PG is a runner, so I spend time running after her, restraining her, and physically bringing her back to the task at hand.
The past three days were VBS (Vacation Bible School) at my church. On one of the evenings, PG had diarrhea very early on in the evening. (It was due to something she ate, and her parents were fine that she stay for the rest of the evening.). However, she got a little in her underpants, and for the rest of the evening, she kept trying to put her hands in her pants. And though I washed my hands many times with soap and water, by the end of the evening, I smelled like diarrhea.
And all of the parents of the kids in this program, and all of the volunteers who work with the kids, undoubtedly have similar stories to tell.
I want it to be noted, though, that a lot, if not all, of the unglamorous traits of helping kids with disabilities, are simply traits of working with kids. Working with kids really, of any age group and in any capacity, is beautifully messy. Working with kids with special needs simply adds another layer of messy beauty. Kids with special needs are still kids, dealing with the normal issues and challenges of being a kid, but with additional (and oftentimes individualized) traits that come with their diagnosis.
Working with kids with special needs is so unglamorous and frustrating and exhausting and messy and challenging and at times, exceedingly overwhelming. It is even often a thankless job. But. It is the most rewarding thing I have ever done, and could ever do.
I love my PG. She may not quite know my name, but she knows she is safe with me. She knows my face and my voice, and she knows I am here to help her. She knows she can have fun with me. In fact, one of my most favorite things is when I can get her to belly laugh. I love when she hears what I ask her to do and she does it. I love when she can say “sorry” or “thank you” or “please” without prompting. She loves to sing and dance, and I love when she sings along, or does the accompanying motions. I love when she grabs my hand or sits in my lap spontaneously. She loves to read, and will often “read” me a story, which I simply love. She loves big, gives great hugs, and will walk up to complete strangers and say “hi”. She knows Jesus, and that makes me so happy.
In the hallway in the lower level of our church, we have a painting of Jesus, surrounded by the kids from our congregation that have passed away. It’s a beautiful painting, and last night at VBS, PG stopped to look at it. She pointed to Jesus, and said, “That’s Jesus. He died.”. I was a bit taken back, but I said “Yes, you’re right. But He’s not dead anymore, right? He’s in Heaven.”. She continued to look at the painting, nodded her head, and said “Yes. That’s Jesus.”. Then she grabbed my hand, and walked away. That moment made my heart all kinds of happy.
And my most favorite story to tell about PG happened when I was feeling incredibly overwhelmed and stressed. It was before she was in Kindergarten, so she was part of a class that had kids ages 3 to 5. On this particular Sunday, there were four kids with disabilities; PG, her younger brother with intellectual disabilities, and identical twins with Autism, but with complete opposite preferences in terms of physical touch. I was the only trained volunteer (for kids with disabilities) in the room at the time, and was feeling a bit overwhelmed. There was another helper, who is absolutely incredible. In a moment when the twins got angry and upset, this amazing helper was right beside me, trying to figure out which twin needed physical touch to calm down, and which didn’t. It was also in this moment that PG‘s younger brother was stepping on kids and taking toys. I began to get worried that PG would have a issue, and thus causing this helper and I to put a child under each arm, and get out of the room. But as I stood up to make sure there weren’t any more issues, PG caught my eye, smiled really big, and started to sing “Jesus Loves Me”. My heart pretty much overflowed.
Working with kids with special needs is hard. There are times I find myself frustrated and exasperated. There are times I look for help, and I am learning it is totally okay to say “I need help right now; I can’t do this by myself”. I make mistakes sometimes, and sometimes I make them a lot. But I learn something new about PG everyday, and I learn new ways of helping her. I have loved watching her grow and learn and blossom into the beautiful soul she is.
I do something unglamorous.
But I wouldn’t trade it for anything in the world.