A few months ago I wrote a piece called “Why Church Is a Burden for Special Needs Parents.” The post gets lots of traffic and comments, and let’s face it–it’s because the topic hits a nerve. Far too many people have had similar experiences.
In the post I mention the need for respite among special needs parents and caretakers — you know, maybe one hour a week for a little coffee and adult conversation — or maybe even Bible study.
Based on some of the comments, you’d think I was asking for the moon.
- Some commenters are just plain mean, like the one who said I sounded arrogant and condescending by even suggesting such a thing.
- Some of them seem to think that special needs parents are just looking for free babysitting (insert ironic laughter from special needs parents here).
- Others say, “We’re just volunteers. You can’t expect us to actually do anything.” Um, yeah. I addressed that one already.
- And then there are quite a few commenters who feed me the line, “I see both sides, but. . .”
Then they go into a lengthy diatribe about this out-of-control kid they were forced to teach and how it wasn’t fair to the other kids and how that kid needed more discipline and the parents should’ve been more pro-active, yada, yada, yada.
I realize I sound a little sarcastic. Or cynical. I’m definitely doing a little eye-rolling over here. Why?
Because I’ve heard this same song and dance more times than I care to admit.
Let me give you a little breakdown:
Before I had children of my own, I taught public school music for nine years. One of my responsibilities was putting on cute music programs for PTA meetings.
I was working with first graders on this one particular program. Six year olds are wiggly and hard to manage, special needs or not. But there was this one boy who was always talking, always causing problems, and always breaking the rules. He drove me crazy.
One morning as we practiced, I gave a final warning. I told the kids if they couldn’t behave, I would ask them to leave the stage and they wouldn’t get to perform that evening.
No surprise, this little boy couldn’t cut it.
Within two minutes he was off those risers and sitting on the cafeteria floor. I told him afterwards that since he didn’t obey, he was not allowed to perform that evening.
Of course, he was the child of one of the big PTA moms. She called the school. She held a meeting with me and she cried. She begged me to let him sing.
I held my ground. I was firm and I refused. I told her how he knew the rules and he chose to break them. I patted myself on the back for being such a responsible and effective teacher and for teaching this boy what I thought was a valuable lesson.
And here I am, twenty years later, wishing like anything that I could go back and redo the whole thing.
You see, I was smug. I was young. I thought I knew all the answers. I thought everything was cut and dried, that an assertive and logical approach was the way to handle any misbehaviors.
But the truth was I had absolutely no idea.
- I didn’t have children of my own yet. I didn’t know what it was like to hurt for your child, even — or maybe especially — when they make poor choices.
- I didn’t know that outward behavior is NOT the most important thing, that sometimes kids really are eager to comply and they just can’t.
- I didn’t realize that a 7-year old boy is not likely to be that serious about anything, especially not one with ADHD (which this boy likely had).
- I didn’t know that one day I would have a child who, despite my best efforts, would misbehave like crazy and that I wouldn’t be able to control his behavior just by trying harder and punishing more.
- I didn’t know how every kid is different and how denying a child a place onstage wasn’t solving the problem, but was just pushing it off to the side.
I just didn’t know. I was young and naive and prideful and I didn’t see both sides, even though I honestly thought I did.
Now I do.
So to those who look at special needs ministry and say, “I see both sides,” I have to ask, “Do you really?”
Do you know that I, as the mother of a special needs child, have not received any formal training in how to parent a child with autism?
You complain that training for Sunday School teachers is too much to ask or is too expensive. You say that parents are the experts and we should be the ones training everyone else.
But I didn’t receive an automatic download of information the day my son was diagnosed. I don’t have all the answers. I don’t know anything that I didn’t learn by my own initiative and experience. And there’s always a slew of new information out there, so I’ll always be behind.
I’m really not any more of an expert than you. I just have more of a vested interest since he happens to be my child. Let me assure you, if it were your child, you would do the same.
Do you know that I suffer from extreme anxiety and PTSD as a result of my child’s diagnosis and the first years following?
Do you know that because of my condition, I can no longer sing in public, even though I have a degree in vocal performance? Do you know how many doctors and specialists I have seen to help me deal with said anxiety and how I’m still not cured and probably never will be?
Do you know that I don’t know ahead of time what I should and shouldn’t do?
You have all kinds of recommendations of things special needs parents “should” do but you have the luxuries of hindsight and objectivity. We who are in the trenches are having to make decisions left and right, with no former training or hindsight to influence those decisions. And those decisions are clouded by intense emotions. So sometimes we don’t make the best ones. Sometimes we forget things we should have remembered, which those who “see both sides” seem to find inexcusable.
Do you have the slightest idea how many hours I’ve spent trying to come up with solutions or ideas to help my child?
How many books I’ve read, conferences I’ve attended, or online gimmicks I’ve bought into? Do you know how many dollars I’ve spent on psychiatrists and therapists and medications and supplements? And do you know that I’m one of the lucky few with a college education and good health insurance?
Do you know the guilt special needs parents feel?
The guilt that eats us alive when we don’t spend every waking hour trying to find and implement new solutions to old problems? Do you know the ache of worrying over your child’s fragile condition, or his social anxiety, or the threat of bully-induced suicide? Do you know that guilt is such a heavy burden that it sinks most of us into depression? That we feel like we have to be on constant alert, ready for the next battle? That we find it practically impossible to rest or relax and that our bodies pay the price?
Do you know that we can recognize when you don’t like our child?
You think we don’t know, but we do. Do you know what it feels like to have the adults in your child’s life roll their eyes every time they see you coming? Do you know what it’s like to have the infant you carried turned away by “nice Christian” people at the ripe old age of 4 or 5? Because of behaviors he isn’t even aware of and a disability he can’t control?
Do you know that we develop fear of even going into public because of the scorn and the judgment we receive?
You say that we just expect free childcare or that we are selfish to want an hour of respite, but do you know how many times we’ve just stayed home? How many parties or family gatherings or church events we’ve missed because we just don’t have the strength to face the judgmental looks once again?
Do you ever think about how many tears we’ve cried?
Do you really think that special needs parents just go through their days glibly, without a care in the world, and that they are secretly plotting to take advantage of church volunteers? Do you consider that maybe they want to attend church for the same reasons you do? That perhaps they love their children as much as you love yours?
Do you ever — even for one moment — stop to think what it would be like to be in that special needs parent’s shoes?
How hard it might be? How really all you need to offer is a smile and a willingness to help and that if you just give an inch, the parents will fall all over you with gratitude and eagerly agree to go the extra mile?
I didn’t think so.
So maybe you really haven’t looked at this issue from both sides. But it’s never to late to start.
Special needs families need you. Yes, I mean you, church volunteers. The ones who, like me when I started, thought you could see both sides, but now realize you didn’t.
Will you love us?
Will you love our children?
Will you admit that you don’t know what to do but that you will trust God as you walk beside us in the journey? That’s all we really want. Someone to hold our hand and let us know they love us enough not to leave us by the wayside.