It is impossible for a man to learn what he thinks he already knows.
Having a special needs child is a challenge on so many levels. Having a special needs child that doesn’t LOOK special needs, even more so. How about a high-functioning special needs kid with instinctive and educated parents? Yeah. It sucks.
We’ve followed our instincts. We put him into occupational therapy when he was less than three years old. We’ve worked with multiple therapists, psychologists and psychiatrists. We’ve carried over nearly every possible treatment into our home life we could easily manage. Weighted blankets, weighted vests, “squishy” toys, fidgets, things to chew on, food and supplement changes to help with possible deficits that might arise, weekly OT sessions, social stories, visual schedules, volcano analogies, thermometer analogies etc etc and so on and so forth. We have spent the past eight years of our lives educating and working toward a common goal: helping him learn how to function in daily life.
We know when things aren’t working. By this point we know when he is slipping into a pattern of behavior and start taking steps to avoid circumstances that could possibly exacerbate issues further. I know when to remove him from a noisy crowd just by glancing his way. I know when it’s time to break from school so he can run laps around the house to move his large muscle groups and work out his place in time and space. I know when he just needs to sit and veg so he can recoup and recover his thoughts. I know long words with complicated meanings like “proprioception” and “neuro-typical” and I can use them correctly in a sentence. Not because I have a friend who is a PT, but because I am driven to understand exactly what it is that my son is dealing with on a daily basis. I can not have a functioning family if one of it’s members can not function. I must know these things.
All of these things, all of the accommodations and work that we do, we just do. We don’t announce it to the world, we don’t shout from the roof tops that we’re doing it, we just do. It’s how we roll. The thing is, they’re work, and not a small amount of work. I am “on” all day long, seven days a week. Really, even most nights (as any parent would tell you). I have to be completely aware of what is going on in my home and with my children all day. I don’t have a babysitter for my special needs kid. If I go out, or dh and I go on a date, big sisters are there to step in, mostly because they are the ones that understand the most. I can’t talk to other people about my son without first speaking about his medical care/condition with people who have no need to know. I can’t talk about my struggles raising a spectrum kid without risking someone judging my son. I can’t speak about what our daily life is like because so many people want to “help” and they just don’t know how and they are unwilling to hear what we really need.
Funny thing, this whole spectrum disorder crap, everyone has seen a story on the news about it, or read a magazine article about it, or they’ve seen Rainman, and suddenly they know everything. OR They don’t know anything and just can’t accept the fact that this isn’t “fixable” that we really are dealing with something that our son will have to work with for the rest of his life. It makes for “opening up” to be much riskier than I am willing to mess with, most days. I remember in the early days of working through this, before we had much of a diagnosis and life was chaotic at best, I tried to open up. I tried to get the emotional support I needed from people I thought were friends. It didn’t turn out well. It ended with me being told I was not someone who one could be friends with. I was, evidently, completely eaten away inside with anger and hate. I needed to work on myself before anyone else could get close to me. Thing was? I was just relaying points of my life. They weren’t the prettier points, but in that season, there weren’t many pretty points. Life sucked. I’m not saying we weren’t blessed, we weren’t alive and happy and joyful, but if you looked at our daily life you would not see a bed of roses. I had an undiagnosed spectrum disorder kid. Life was nuts.
I learned, very clearly, that this life that we are, indeed, BLESSED to live, is not one that people can easily look upon. I learned that I needed to give the world the rose-colored glasses it required to see my family. People give a lot of lip service to rebelling against the world’s current attitude about perfection. They speak on and on about embracing the person God created you to be, BUT they fail to understand that what God has created is perfect, in His eyes. They fail to see the beauty that comes in small victories and little breakthroughs. What they see is their friend, hurting for her child, her children, her marriage, her home, her life, her loss of dreams, and what they know is that it needs to be fixed.
Sadly, it can’t be. For whatever reason, it can’t be fixed. That doesn’t mean it can’t be helped. That doesn’t mean that daily life can’t be made easier, if you know how. It makes me chuckle a bit to think of how many people get frustrated to the point of anger at me because I am insistent they can’t “cure” this stupid disorder but flat refuse to listen to the things they can do to help us manage it. Somehow, if there is no “cure” there is no “point” no hope. If I say to you “we really shouldn’t be spending the night away from home. It’s too much for my son. It takes weeks, if not months, to get back into the swing of things and get him regulated afterward, however, please, come to my home. It’s always open and you’re always welcome” I really do, in fact, mean exactly that. No more, no less. It’s just what it is. Face value. (an incredible gift we’ve been given with this boy of ours, seeing things at face value. ) What that does NOT mean is that you can take that piece of information and twist and turn it until you come up with something you think you know would help because you’ve seen Rainman five times. A good response isn’t “well, if he’s having that hard of a time I think maybe it’s best for him to just be home with you and his siblings. That way we’re not disturbing anyone”
Please, please. Just trust me. I know. I’ve been here. I’m doing this. I’ll be doing this for the rest of my life. It’s my life work, this understanding this mysterious boy God has given me. Please. Listen when I tell you what we need, don’t try to interpret that for yourself. Don’t spend hours on end quizzing me on things you’ve seen might have helped a celebrity once upon a time on a soap opera. Please. If you want me to open up to you. If you want to be my “support” then, please, just be supportive. Listen to me when I cry because I can’t fix my son. Listen to me when he’s stuck in a loop about getting his clothes folded even though it’s an impossible task at the moment and he’s freaking out and I just need a quiet voice to tell me how amazingly wonderful he is. Listen to me when I tell you how we can get together and when and why and don’t try to come up with a prescription on your own, for something you know nothing about. Listen to me when I tell you it’s been a bad day, but I don’t want to talk about it. Sometimes it’s just enough to know that someone will say “okay, I’m praying for you”
and love my boy.