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Niki Walden – Live Deeply

I’m Niki Walden, and this is how I’ve been living deeply the past few months.

Having a child on the autism spectrum isn’t a seen disability, so if you were to see Annabelle in public, you’d just say she’s a five-year-old little girl. You wouldn’t notice there’s anything wrong with her unless you spent some time with her and realized she can’t speak. She also ‘stims,’ which in her case means she flaps her hands when she gets excited. A lot of people don’t understand what it’s like when a child like this has anxiety or a meltdown in public. Older generations especially tend to assume ‘That child hasn’t been disciplined’, when in fact my child is experiencing sensory overload from the store we’re in- the colors are too bright, the music is too loud, all of that. Doctors diagnosed Annabelle right before she turned three, and she just turned five, so we’ve been on this journey for two years. Looking around Knoxville, I felt like there weren’t very many opportunities to get plugged in with other parents going through similar things. Our daughter goes to therapy and I was trying to make friendships at our ABA (Applied Behavioral Analysis) therapy, but it wasn’t working out. People didn’t want to talk, and I get it- why would you want to have a stranger come up to you and say, ‘Hey, our kids are both on the spectrum. Why don’t you come over to my house?’ Now there are lots of Facebook groups, but I like to be face to face and get to know people. I know of one group from another church that meets in the morning once a month, and I still attend that group. However, I just felt like there was nothing for the community in general. So now I’m leading a special needs support group at CSPC that’s actually for the community- it’s not just for church members. We meet upstairs in the parlor, usually the last Friday of every month. It runs from 7 to about 8:30 at night. (If you’re interested in coming, just email me! Rom8nd@hotmail.com.) We don’t talk about anything religious. It’s more for the community to come in and then Jesus will show up however He wants.

What’s really exciting is that this group coincides with –and is actually part of- CSPC’s renewed commitment to special needs ministry. After Annabelle’s diagnosis, I was looking for guidance and wasn’t aware of any formal special needs ministry at the church. So I started having conversations with various people, asking, ‘What is it going to take?’ One of the most helpful voices was Kathryn Ann Holt, our home missions director. She had already been going to a church network group that Joni & Friends puts on once a month, so she started inviting me and a friend to come to those. We’d hear from churches that already had significant special needs ministries- What was working? What wasn’t? From there, I kept making connections, which ultimately led to a team of five women at CSPC who were committed to making the vision a reality. The two main things our group of five decided, going back to early this past summer, were: 1) I would start the support group. 2) We needed to work on figuring out Sunday mornings for special needs families at our church. Then, six or seven months ago, executive church leadership got formally involved, and that was when things really got moving. There had actually been a desire among top leadership to devote resources to this area for some time, but they needed to get through COVID and some staff restructuring first. I was thrilled to learn CSPC had the resources to add a new staff member to lead this new special needs ministry. Her name is Mary Kendall, and she just started this month! But even before her arrival, they went ahead and had me start the support group, which fell under the women’s ministry until the new special needs ministry was in place. So I started it in the fall- September was our first meeting. We average about six to eight women- all moms right now. But a sister and grandmother have also expressed interest, so you don’t have to be a mom. We share our burdens but also keep it light with a craft or game. We’ll have speakers for some meetings, too, including RUF talking about its special needs camp in January and in February Joni & Friends coming in to talk about its family camp.

One very hard reality parents of special needs children experience is their kids not meeting typical milestones. Especially mothers then compare their children to others –I’ve been in this boat. I have a child who’s neurodiverse (has a disability of the brain), and I would compare her to a child who’s neurotypical. And of course they’ll hit milestones at different times. That can take you to a difficult, dark place when you’re new to it. You have to get to where you accept your child for who they are, and if you haven’t gotten there, comparing your child to others who aren’t neurodiverse can be very depressing. So it’s helpful to talk to other people who get it- who understand how exhausting, how challenging the behaviors or just the medical part of all this can be. One thing we’ve found out already through the group is that when you have a special needs child, you tend to run in the same medical circles. One person would bring up, ‘We went to see Doctor so and so.’ Someone else would say, ‘Oh, we’ve seen him’ or ‘Okay, you don’t want to go to this specialist.’ There’s a lot of asking for advice. That’s very helpful- I see it as God at work. I had asked Him, ‘Help people feel like they’re in a safe place, so they can share, and no one will judge.’ And He’s answered that. When we started, I was afraid people wouldn’t want to share. But even at the very first meeting, people were so willing to open up. We have a couple moms whose children have extremely rare conditions -these are older kids, in or approaching teenage years- and those mothers feel safe in this space. They can explain they’ve been to seemingly 20,000 doctors, and no one can really figure out how to treat or relieve their children’s symptoms, and they’ll be heard. So it’s awesome to see this group, and the special needs ministry period, coming to life at CSPC. And by the way, only one other group attendee so far has been a CSPC mom, which means we’re serving our broader community as we hoped. When you help with someone’s burdens, it can also open them up to trust you so that they become interested in Jesus. Hopefully God will open up avenues in that way, too.

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