This past Sunday we went to church which was a pretty deal because we haven’t been in over a year and a half.
Let that sink in. Eighteen months, no church with community. That’s 547 days and a lot of Sunday’s longing for a place our entire family could go.
When Reagan had her crisis, we felt homebound due to our new circumstances; no one was comfortable watching her for two hours alone, heck, WE weren’t even comfortable. That’s why Rob was basically home for three months and would sporadically hop into work, and when he did go back, I’d be calling in a teary, cursey storm about how I couldn’t do it and needed him immediately!
We were both depressed, but just because we felt the inability to attend church didn’t mean we weren’t having church within our home. You can read the God category of the blog to see how we totally relied on God for those 547 days (and still do) before we were able to go worship him with other believers. One of the most precious times for me, was when we would feed Reagan at 11 p.m. at night and Rob would read the Bible out loud. He read all of Psalms, Proverbs, the gospels and I think he made it through to Philippians or Colossians before we could eliminate the night feeding.
I told lots of my friends that I felt there was no place for our family at church…the church we attended didn’t have a special needs program. It’s not just that church, it’s so many churches who don’t have a special needs children’s ministry and the parents subsequently feel separated from the church because of it.
Having a special needs ministry at church requires work and thinking, just like any ministry within the church (missions, jail outreach, volunteer events, etc), it requires thinking and planning. I don’t know why more churches don’t offer or advertise their willingness to help special needs families. I understand it’s tough and not glamourous, but it is so important to be intentional about including special people into God’s family.
Rob and I attended a new church over the weekend that had a special needs program. It wasn’t filled with tons of kids, but they were ready. Reagan was the only one that day. She was assigned a “side kick” to be with her so she could be included with the regular kids church. The side kick is essentially there to be there for her one on one. She helps Reagan be included and protects her from any potential situations that may come up if she needs to.
I feel that while Reagan has a lot of special needs, for an hour during church, no one will need to use the g-tube, administer mediation, etc so she’s actually pretty simple. She’s got some mobility deficits and isn’t able to talk much, but she can show you what she wants and can communicate without words somewhat well (sign language is on the agenda for sure), plus she plays really well with others. However, leaving her alone with a group of kids isn’t an option either…she requires an extra set of eyes, ears and hands to help her.
What about other families who may have kids with more or less severe special needs issues; I wonder if they feel the same as we did? Left out.
I believe autism affects 1 in 64 kids, so if you’re not sure if the need exists in your congregation, let me assure you it does. The church we attended last Sunday said they are happy to have any child with special needs in their kids church as long as they feel they can safely accommodate the needs. That’s a great philosophy to adapt, and to take it a step further, if they can’t safely accommodate, how about a church team that comes to the family’s home to pray, sing or just be there for the parents. It’s exhausting when you feel there’s no outlet, no help outside the walls of your home, no real way to have a sigh of relief or rest with others who are willing to help shoulder the load, even just for a moment.
I think it’s really important these families have a cheerleading squad. For married couples who have a special needs child, eighty percent of them end in divorce. We have to stop that statistic. We have to do more. Believe me when I tell you, I wasn’t aware of the great need or that staggering statistic, but now that I am, I challenge you. If your church doesn’t have a program, start one. If you aren’t sure how, Rob and I are more than willing to sit down and talk about how that program could work.
Because after we entered the loud music filled sanctuary and assured Reagan loud music was great and not something she should be afraid of, we sat as a family of three in the sanctuary, and watched Reagan play on the stadium seats in a gym auditorium. We sort of sang and looked up at the screen with the song words and at the band and then back down to our bouncing toddler. When it got quiet, I took her fighting self into the hallway and took a little tour led by the children’s director. For thirty minutes I asked my questions, she answered and I pondered should I let her stay for a little bit? She clearly wanted to go play. She stood on the opposite sides of the kid’s gates and begged me with her finger pointing and grasping over my shoulders to go back in that direction as I carried her away.
So, I decided. Ok, Reagan you can go. I will let go of my tight grip and give you some wings. Her sidekick was ready. I walked back into the sanctuary, alone. Rob turned around with big huge eyes, I could tell they were tear filled. He had the most enormous smile on his face and a look that said where’s Reagan? Even though he already knew.
It was a big moment.
So I showed him this picture and said, “This is what your daughter is doing right now.” And we just sat there and sighed and held back tears.
“Do you want to go see?” I asked. And he absolutely did.
So we watched her play from the doorway and we watched her grow up a bit that day. She was so ready to be included. And when it was time to leave, she was kicking and screaming because she wanted to stay. We are so excited to go back and are trusting God to keep her safe and healthy. We dedicated to her to God when she was 10 months old, and He is going to honor our decision to do so, not just then, but continually every day.