This is my boy. He has Aspergers. Aspergers is a term used for people with high functioning Autism. We face a lot of challenges in our home from emotional outburst, behavioral issues, mood disorders, anger and rage . . . but surprisingly, the biggest challenge I personally face isn’t my son’s emotional imbalance, it’s not the texture issues and the fact he never where’s long pants and all his clothes are two sizes too big, it’s not the aggression we deal with, or the constant GI problems he has, it’s not his outburst of rage either, in fact, my biggest struggle has nothing to do with my boy at all.
The two biggest struggles I face (because thank the good Lord he is oblivious to it – for now) is that he looks “normal” and people. People in general, but sadly, especially people in our churches. I was once told by a sweet friend who also has a child on the spectrum, “some of the cruelest people I know are at my church.” And y’all that broke my heart. It still breaks my heart because the reason she confided in me was because I had been sharing how cruel people are with the glances and glares.
There was a period of time when Christoher was diagnosed with Tourette’s. If a person is diagnosed with Tourette’s they have physical and vocal tics. Certain medications or stressors can make the tics worse. Christopher’s vocal tics became very loud, and his physical tics were even more noticeable. They had gone from eye blinks and facial twitches to head jerking. The looks of “can’t you control your child” coming from people in the pew in front or next to us was nauseating. And who knows what was happening behind us.
My girl was diagnosed with tics several years ago. She’s never had vocal tics but with recent stressors her tics are increasing. Medications are not controlling them. Oils are not helping them. Gut health is not helping them. We see her doctor Tuesday. I’m sure neurology will be consulted but her tics now have her neck jerking and pulling and usually her arms are involved in the ticking motions. She gets stares and laughed at by kids and sadly, by adults.
Both of my children APPEAR to be normal therfore they are expected to BE normal. Which means you, the person sitting next to me in church, expects them to sit still and to be quiet.
Because they LOOK normal.
We have missed several weeks of church. We had sickness, death, and exhaustion to recover from. But prior to missing the last three weeks Christopher was staying in the lobby of the church because he was not comfortable being crowded in a pew, working through the crowd, and the music playing loudly, was just more than he could handle. We can’t afford the nice expensive sound cancelling headphones but when we were at Halls Hardware recently he spotted a pair of noise control headphones used in lawn care businesses for $4.99. For that price it was worth a shot! I’ve had to add some extra cushioning in them to make them work better but today was a succesful day, well, other than his body adjusting to medications and he fell asleep during church! But I figured having his head bopping up and down was better than him fidgeting or even missing out by sitting in the lobby because he loves the music and he adores his Pastor. He was embarrassed, at first, to wear the headphones, but he did it! And I’m so proud of him!
My heart’s desire is to be a voice for my children. To be their biggest fan and their number one advocate and to empower them to be life changers, for them to be succesful in their journey of pursuing God’s will for their lives. In order for that to happen their has to be acceptance for ALL special needs children which means educating the ignorant and for me, that begins in my community. The word ignorant means one is lacking knowledge or awareness in general; uneducated . . so please know I’m not just calling people names . . . but one lacking knowledge in a specific field is ignorant. I am ignorant when it comes to medical terms, and automatics work, most house repairs, etc. It doesn’t mean I’m stupid it means I’m not educated in those fields. Does that make sense? It’s my job as a mother of special needs children to educate others that don’t know better. I love my church, so please don’t take this as an opportunity to bash my faith family. God gave me my church when I was at my lowest and a drunk. He gave me a group of people that loved me and accepted me when I myself was unloveable, but it took someone coming before me to teach them when they were at a place of ignorance, to lead the way. A church is full of sinners and I can assure you that my closet is full of sin. I’m not sharing to condemn, but to make others aware that special needs people have a place in church just as much as you do. Maybe someone is reading this and you have been critical of a disruptive child, I know I had been. I remember vividly one exact moment too and oh how I wish I could go back and make it right . . . But if a specific incidence came to mind for you just now, I hope you not only feel remorseful but I hope you experience a changed heart. I hope you feel compassionate for the parents sitting there because I promise you, they are fully aware of what’s going on and their only hope is that somehow, amongst the disruption, she can glean some hope and encouragement to carry her through the next week until she can find her way back through the muck and mire of life . . . and maybe, just maybe . . . the person that sits next to them will be loving and compassionate . . . and accepting.
In my present community there is only one church that specializes (that I know of so correct me if I am wrong) in the most incredible way for special needs children. They send volunteers off for training to educate them on how to help and work with special needs children. They sponsor a respite every month for special needs kids to offer parents four hours of rest a month, not just kids on the spectrum, but all special needs. Living Truth Church in Chumuckla has set the bar high. Acceptance of the disabled is preached, lived, taught, and trained there. I know not all churches are called to minister in certain areas, but Christ-followers are called to love. We shouldn’t have to attend a training class to show love towards others. Not if you are a Christ follower when Christ Himself gave the ultimate sacrifice of death on a cross for you. . . for me. If reading this stirs something within you and you desire to learn more about welcoming and accommodating special needs people into your congregation, there is no doubt the folks at LTC will be happy to guide you. We spent seven months there and they are an incredible group of people.