Part of my struggle in blogging has been wrestling with the tension between being real and authentic while trying to be positive and optimistic as well. Sometimes have been easier than others. The moments of great spiritual insight through the struggles of raising a special needs child have been most profound and for which I am incredibly thankful. But to be sure, I do not enter every moment of challenge with my spiritual eyes in full focus. Some moments are just ugly. Some days are just hard. And sometimes, I come to momentary grips with the coexistence of both sinking despair and incredible hope.
As we say in the therapeutic world, I was “hooked” recently by a post I saw on Facebook. To be somewhat generic, the gist of the post was focused on the challenges of taking the family out to eat and all that accompanies taking young children into a restaurant. Most of us are familiar with that picture: picky eaters, kids crawling under the table, spilled drinks, etc. Frankly, I simply see that as: normal. I would suggest that most typical parents and families have experienced, and probably multiple times, that scene to one degree or another. I suppose what hooked me as I pictured this wonderful family enduring the typical challenges of taking kids to a restaurant was not that they were complaining about the experience, but that I long to have that experience again. Our family has lived in Hawaii for nearly two years, and we have not gone out to eat as a family once. To be fair, my wife and I as a couple have enjoyed some of the fine and unique culinary fare that Hawaii has to offer. And for that I am thankful. People often ask us if we as a family get to enjoy the restaurants here. And while not untrue, we have blamed it on Covid restrictions and such without sharing the other side of truth.
The deeper truth as I read this particular post is that I became intensely jealous. I was jealous for normal. By the way, the special needs world shies away from using the term “normal.” Frankly, I find that a collective lament exists amongst the special needs community as the word normal strikes the chord of that which does not exist for families like ours. Thus, the word “typical” is most commonly used when referring to a child that is otherwise “normal,” and without a diagnosis. But normal is what I want, that is what I am jealous for. I grieve that I once knew what the picture of normal looked like. I remember telling my girls to turn around and not stare at the family in the next booth. I know the “joy” of trying to get the picky eater just to take three bites. I certainly know the frustration of yet another bathroom trip just as the food comes and is at its hottest best. I miss those days. Sometimes I wish we could go back and have a “do-over.” But we cannot. There is no return to normal as we once knew it.
The other truth is that we have not gone out to eat as a family for close to four years. I had almost forgotten how long it had been until I was hooked by this post. Even now I feel the pit in my stomach as I think back to the times that we tried while living in North Carolina before moving here. I wanted us to be normal. And even in spite of Kaydan’s disruptive and destructive behaviors, I still wanted to try. I was the optimist. “We’ll make this work,” I would often say to Lori as she begrudgingly conceded as if she knew what would happen. And it seemed that she did. I do not remember every detail of Kaydan’s behaviors. What I do remember, and on several occasions, is the desperation in my wife’s voice and the despair on her face as she would tell me, “I can’t do this.” Defeated, we would do our best to leave without further fanfare, but it was often too late at that point. As we often and still say, “Kaydan does what Kaydan does.” The frustration, anger, and angst that we all experienced in those moments was likely wafted back to the kitchen itself. Not only has it been more than four years, but I cannot recall the last time we were able to finish a meal in a restaurant. In fact, somewhere near the last time we ate inside a restaurant we left before we ordered or at least cancelled the order before it was prepared, but I cannot be certain. I am certain that it was embarrassing, especially to my wife and even my other children. But that was the last time.
I am genuinely glad when people share the joys of their lives that are more “normal” than mine. We have our own joys too, many of them are even seemingly normal! For that I am thankful as well. And some are reserved for the smallest of accomplishments that many typical parents do not understand. And what I am about to say is what every special needs parent has experienced but many would never acknowledge. I often find that parents of typical children, whether its their attempt to normalize the behavior of their child or mine or both, will say something like this, “I know what you mean, my Billy/Sally does that too!”
I would offer you that the experience of being a special needs parent is one of extremes and while all behavior is universal, the behavior of a special needs child is sometimes extreme. I am particularly reminded of that extreme every time I change the pull-up of my nine-year old. I long for him to have a “normal” accident wearing underwear and to be done with pull-ups. I long for him to sleep “normally.” I long for him to wake up at a normal time versus waking up at 0327 and insist that the blocks in his room be picked up. And I certainly pray that he will one day talk normally. Truthfully, special needs parents do not want or need pity, but nor do we want our experience to be compared to your “normal.” What we do want is compassion and understanding. And I would go one step further and submit that is what we want to give as well.
By now, most special needs parents (I hope) are saying, “Yes! This guy gets it.” If you’re a typical parent, a friend, or a grandparent, maybe you respond with something like, “Oh, I never thought about that.” Awareness is a huge theme in the special needs community. Sometimes however, that awareness comes with an edge, or worse, I have seen attempts to “enforce” awareness, as it were. My intent today is not to bring an edge but to simply lay bare the depth of my experience with as much transparency as a blog allows.
In a previous post I noted that awareness is not enough if it does not spurn us to action as well. That action is compassion and understanding, and as I have suggested goes both ways. So, if you are the parent of a typical child, the next time you are tempted to relate to a special needs on the basis of comparison: Don’t. Try putting yourself in the shoes of that parent and imagine what parenting their child would be like. And if you are a special needs parent, I challenge you not to withdraw and disengage, which frankly is an effective method that we often employ to avoid connecting with other parents, typical or otherwise. And just because typical parents do not always understand our unique challenges, it may be that our open dialogue may help to garner understanding and support. Or, it may be that those typical parents are having a bad day and need our compassion and understanding. Parenting is challenging work, period. Remember, understanding and compassion is a two-way street.
As always, thanks for your continued and prayerful support. God is faithful and greatly to be praised.
Brad