asperger's

I want to take a moment to talk about where my kid comes from: me. Not to sound self-important, but let's face it, our kids do contain our DNA. While I've been watching my son grow and learn, it has only become increasingly obvious to me that he will one day be diagnosed as somewhere on the spectrum. In my own personal opinion, having a lifetime of experience with a brain that works in a similar way, I think he will most definitely be diagnosed as having Asperger's. Well, as I've mentioned before, that title for the diagnosis is going away, (in just a little over a month) but what you call it doesn't matter. My son's mind works in a special way that is different from what society considers "normal".

So does mine.

I found this incredible blog post that talks about a man who wasn't diagnosed until he was an adult. It briefly describes the effect his unique mind has on his marriage, as well as what it was like to lack any sort of explanation for how his brain works differently than a lot of other people. While I was diagnosed 9 years younger than he was, (21 instead of 30) I can still relate. Who I am, this new realization as to what makes me tick the way I do; everything about this diagnosis has had an extreme effect on my relationship with my husband.

A lot of the time when someone learns that I have Asperger's, they seem to think I'm making things up to get attention, because I've somehow fooled them into thinking that I'm simply the quirky/odd person they've had to interact with. Within the Asperger's community, I am considered very "high functioning". In my opinion, my son will be seen in the same light once he is old enough for anyone to pay attention. Sadly, those who are in a position to help my son in terms of behavioral therapy right now are only interested in one or two half hour sessions upon meeting him, and when someone is on the higher end of the spectrum, that isn't always enough to show what is going on. In addition, the therapist I first took my son to paid very little attention to him after 10 minutes and proceeded to tell me that I was just projecting myself onto my son.

The people in my family who deal with special needs children in their professions all see how his mind is different, though. And over the course of his first year at preschool, his teachers have seen and experienced everything I have dealt with at home. Unfortunately, there really is nothing anyone is willing to do between the ages of 3 and 5. Somehow there seems to be a gap in services between Early Intervention programs and kindergarten if the challenges at hand aren't related to speech, physical, or cognitive functions. He is physically perfect and very intelligent... we don't need help with any of those things. However, all of it raises the issue of Autism Awareness. People just don't seem to get it; just how wide-ranged the spectrum is. At least with children, everyone seems to be more patient. Though I often get comments about my child's behavior in public and the way he is probably being parented at home, they don't know him and they don't know me. I am not a perfect mom, but I am darn well a perfect fit for my son. Meanwhile, as an adult, everyone just wants me to change.

I do not need to be changed. To grow as a human being, as an individual, sure: I can learn and advance. But there is nothing about my essential makeup, nothing about how I was born that is wrong. I have spent my whole life caught in a tug-of-war trying to decide whether I should care about what others think or even how I feel about the picture that has been painted that depicts this erratic and bizarre person. Do I like that unique creation? Am I bothered by the inevitable stigma created by the label that eventually comes into play in order to explain why they can’t quite figure me out? I’ve been blamed for hiding behind my diagnosis. “Don’t let it define you.” It doesn’t define me; it helps you understand me. I’m no different now than I have ever been. In fact, I feel better than ever now that others can at least have a general direction to look, some idea as to what to expect and an explanation for my past actions. Heck, it is nice to know that maybe, if my family were to look back on a lot of my childhood, they could see that a lot of the instances when I claimed an inability to control something for which I was blamed and reprimanded, I was telling the truth. And all of those moments when each and every one of them cocked their head to the side and questioned some odd thing I did as if I was an alien from another planet? What I was doing made more sense than their reaction warranted, they simply failed to take the time to ask and fully understand my actions. I do not need to be changed. I am simply an extraordinary human being, and one that is rarely understood for my full brilliance. 

For as long as I can remember, I have had an impossibly hard time expressing my thoughts. Even today, I find that there are not enough words in the English language for me to communicate what goes on inside of my head. I do not have the capability, even with those words available, to accurately portray my contemplations and general view of the world. The longer I live, the more I am convinced that I just think more than the average person. Even in stating that, I am sure I am not conveying my message properly. My brain simply goes a million miles a minute. Constantly. That rushing feeling that people say they have when trying to go to bed that they just can’t seem to shut off their mind in order to fall asleep? I am like that all day long, every day. I think that is why I do not like to spend a lot of time by myself. When I am alone, it is even more intense. If it were in an audible narration format, imagine an auctioneer’s voice selling off items and multiply it at least ten times. When I am around people that I know extremely well and am comfortable with, it slows and dims a little, helping me relax. To express even a fraction of that to someone else takes immense focus and has always been difficult. I constantly feel disjointed and wonder if anything I am saying (and even more often wonder in my writing, though I am relieved to be able to re-read everything before submitting it to the eyes of any peers) makes sense. Hopefully over the years I have become more comprehensible, though according to my mother I have always been eloquent on some level or another. I know I have been accused of being afraid to be left inside of my own head as far as spending too much time alone and without other people, but I wouldn’t say that is the problem. I’m not afraid of what is in there; it is just too tiring when I’m not asleep. I spend a lot of my alone time reading or watching movies or television because I need something to slow me down. Even cleaning the house or running errands leaves far too much time to think. Writing, which I am hoping to spend more time doing, (and attempting to delve back into) also provides some reprieve.

I am not uncomfortable with silence in the way that the normal person might be. This is also something I have been accused of countless times over the years. I am uncomfortable not understanding what is going on in a social setting, and since that is quantifiably 100% of the time, silence simply baffles me. When silence descends, I have even more time to spin in circles in my mind wondering what on earth is going on. Without someone opening their mouth to give me any clues as to what I am supposed to be doing, what people are thinking, or in what way they are expecting/suggesting I react, I am completely lost. If those things weren’t complicated enough for me (someone who has absolutely zero ability to read physical and vocal/tonal cues) to begin with, silence that follows conversation -- especially when it clipped or cut off -- really has me whirling. I’m not uncomfortable left to my own thoughts… I’m uncomfortable left trying to figure out everyone else’s.    

Very literal thinking and the expectation of others to think of things from the perspective of fact and logic is something else that has gotten me in a lot of trouble over the years. This is another part of me that is not changeable, nor is it something I would change about myself if I could. I do however strive daily to learn how to adjust if someone doesn’t see things from the same viewpoint as myself and make sure that they understand that I wasn’t in any way trying to offend them if offense was taken. Sadly I must say, in this world there are an astoundingly small percentage of people who are willing to understand and accept individuals who take things literally. As I’ve grown up, I’ve learned not to hold others to my same logic to the extent that I did when I was a child. When I was young, I had a birthday party (January) on a day where it snowed so hard that school was let out early. Most of the parents called to say that their children wouldn’t be coming for my sleepover, which I understood because the roads were bad at 1pm. However, when 6pm came, the time at which they should have arrived, the roads were pretty much clear, (a miracle by Penn Dot standards) and it was far from logical that they hadn’t changed their minds and called back. After all, they didn’t have any other plans; they had just canceled a few hours previously. The roads were perfectly safe to drive on now! Why wouldn’t they come? I was devastated. Truthfully, as an adult, I would still probably be upset if an equally upsetting situation occurred, but I would get over it. To this day, I remember exactly how mad I was about that birthday party. Reminiscent of a recent post of mine about just such an experience with my son? Yeah. Now as an adult, my adjusted perspective of logic remains somewhat different from what is considered normal among the masses. For example: unless it is on my calendar, it isn’t happening. This is a rule. I work well within these parameters, but outside of them, I am probably going to be quite upset. I will even admit to a secret: I add in things that have happened the day before if they were unplanned, just in case I need to go back at a later date and know what our family had done for some reason or another. (Don’t judge me, it has actually come in handy!) I do still get quite annoyed when someone cancels an appointment. It “ruins my day,” as I tell my husband. However, I have learned to adjust.

Over the years I have been conditioned to shut my mouth. “Don’t be so blunt.” It isn’t that I was intentionally being blunt; I was simply being truthful. The truth hurts. I don't understand why people do not operate the way I do, and I would much rather have someone be straightforward and tell me what they are thinking, truthfully. It has been very entertaining to start raising a child of my own because he hasn’t learned the art of subtle lying. Call it what you will, I still say that not being “blunt” as everyone has so accused, is really just a form of lying. My son, as all other children of his age, has yet to learn that skill. While I will have to work at becoming a better liar in order to sugar-coat or entirely bypass the truth for the rest of my life, I will always feel that it is a true flaw in most societies. No, that shirt doesn’t look good on you, and you look like you’ve gained weight, not lost it. At least my sisters know to expect the truth from me on those points. My hyper-rationality does not distinguish between subtle tact and a lie; they are one in the same. I mentally know the difference, but detest both equally. It is against everything in me to even smile when I'm not happy. Lies. All lies. And when you teach a child from birth that lies are wrong, how can anyone really blame me for thinking this way?

Like I said before; my poor husband. I feel bad that he has ended up stuck with me. In ways, while I like to tell myself that he knew what he was getting into after having dated me for two years, I think he is still learning the stretching depths of my intrinsic mind every day. While it is always good to learn one new thing about your spouse daily, something that is hard to do as the years go on, I feel like he is still struggling to even dip his toes in the water. Anyone married to me would. Maybe it is simply because I more fully understand the complexity of my own mind that I am worried about his journey into understanding it in the slightest? He knows it better than anyone else in my life does, but I somehow feel guilty for subjecting him to it at all. 

How my "different" mind will effect my son with an equally unique brain is yet to be determined. So far it has been a huge advantage when it comes to raising a child with similar struggles and points of brilliance. I think in that aspect, it always will be. In times when my husband and everyone else struggle to understand what is going on inside the kid's head, I have a much better chance of understanding and being able to help explain. On the other hand, as he grows and matures he will develop coping skills to get by in this strange world, and our relationship will change. I guess all kids grow less dependent on their parents, no matter what the reason or area of dependency. I'm just curious and rather anxious to see what that will look like for us. 

laundry & philosophy

Doing the laundry used to be like riding a bike. I could work on it all throughout the day (yes, there is enough of it in our house that we usually have about 6-8 loads) and not really pay much attention to the fact that I was doing it. Sort into piles, listen to music. Fold socks and type a term paper at the same time. Now, I have a preschooler. He wants to help! Gathering all of the clothes and sorting them went from taking 5 minutes to 15. Granted, he contributes a good load and a half to the laundry, but that doesn't really take more than a minute longer to gather and sort in addition to the other clothes, towels and sheets. Hand Johnny a sock, point to the correct pile. Hand over a shirt, point to a different pile. Throw my own underwear into the appropriate pile and stop him from chasing after it yelling, "But I want to do it!!!" and convince him that there is plenty of laundry and that he should only sort what I give him to sort. He has gotten a pretty good hang of which item belongs in which pile, but I still have to keep a close eye on things as we go so that he doesn't misplace daddy's work/church shirts that have to go through a "special wash". While he can identify those shirts when hanging up or on daddy, they're hard to pick out of a crumpled-up pile on the floor, especially when they're big enough to fit two of him in.

Folding laundry has gone from a streamlined process that I could do practically without even looking at the clothes to a 15 minute-per-basket ordeal. Johnny isn't interested in folding his own clothes, (which are at least his size and would be conceivably easier to attempt) he only wants to fold daddy's. That's kind of like having every item I fold all day be a set of fitted sheets. They're huge, awkward, and require his entire body to work with. There is a lot of grunting and fussing involved, as well as a little red tongue poked out the side of his mouth. He is determined, though! Then I have to wait until he is out of the room and distracted with something else to refold everything. If he catches me or notices that his work has been disturbed, he becomes highly offended.

My most recent Laundry Monday was yesterday, and when it came time to sort and fold socks, Johnny became lost in thought. I was asking him to find me two that were "the same". After putting together several pair over an unusually long stretch of silence, he paused and put his hand on my arm to stop me. "I wanna talkacchew!" (Talk to you -- which sounds more like talk at you, and that is honestly a more accurate description 99% of the time) I squatted down to be at his eye level.

"They aren't the same. None of them are same, they can't be. They match. This one has a spot on it here and this one doesn't," he held up two Lightning McQueen socks, "but they are a pair. They match, but they aren't same. Nothing is zackly the same. There's always something different."    

I explained to him that the phrase "the same" is usually used to describe pairs or things that appear to match. Technically speaking, they don't perfectly match if one has a spot and the other doesn't, but they are a matched set of socks because they were made to go together. We bought them as a pair. He seemed to understand, and we chatted about his Memory game (the one where you flip cards over two at a time until you find all of the matches) and Go Fish. Neither of those have cards that will ever be exactly the same; some were printed a little crooked, some will get bent, some were made with a little spot on them and the matching one doesn't have a spot, but they can all be put into pairs that are "the same". The new word of the day: identical. Even at that, he is a bit picky. He still isn't convinced that anything can be identical. However, he has accepted that people call things "the same" when they're pretty close to being identical. We've settled on that.

Johnny turns will turn 4 in 2 weeks.

To focus his mind on something less intense, we put some of those socks to work...

technology

My husband and I were talking the other day about technology. This is by no means a new topic in our household, as it is not only what pays our bills, (Steve is a sales rep at AT&T) but also a great passion of my husband's. However, the discussion now was focused on the impact of technology on children today.

We were going from hardware store to hardware store, looking for new outdoor trashcans. It's always the conversations that flow during the time when we run errands that reminds me of the reason I first fell in love with him, regardless of our topic. We may be two kids in our mid 20s that have bitten off more than we can chew at times, but we are also two intelligent people who have some definite opinions and what I believe to be some solid grounding when it comes to worldview. Interesting subjects may arise during every day discussion, and we enjoy debating them. I've always valued intellectual banter.

On this topic, we are united: the generation before us simply doesn't understand the generation that we are currently raising. I constantly hear criticism over how children (often spoken loudly in my presence, while my son plays on his iPad) need to be taught how to play outside "the old fashioned way" with dirt and sunshine. What bothers me about this is that they don't know me or my kid.

Johnny does go outside and play without technology. I think there is immense value in the ability to connect with nature and appreciate the world around you, just as God made it. I spent most of my childhood playing in the neighborhood: climbing trees, building forts, riding bikes, spinning in an upright hammock that hung from a huge oak in my backyard. I went for hikes up the mountain, swam in the lake, (that I had some serious issues with, but we can get back to that another time) went kayaking, fishing, horseback riding and camping. I spent an entire summer in middle school sleeping in a tent in my back yard, because I was "that kid". Kids with Aspergers fixate, and for that summer, that was part of my obsession. My son will be raised with a healthy dose of the outdoors, whether or not he (or his daddy) likes it. Luckily, he was thrilled with his first camping experience at the end of last summer.

What Johnny doesn't do is handle some aspects of the outdoors well. They are the same things he doesn't do well with indoors, but they seem to be more prevalent outside. Johnny has sensory processing problems. This means that he has a hard time with some textures, sounds, and on some occasions, light. When you are outside, these things are much harder to control. Grass, sand, mud. A sudden loud bird, all of the unique sounds associated with a pending storm, the buzz of a wasp. The sun -- especially when sitting under a tree and having the shade/sun exposure shifted as wind moves the branches. These aren't things I want to shield him from entirely, but I don't want to throw him into the deep end of the pool either. Technology that exists today (that didn't when I was a child) allows us to slowly desensitize him so that the shock and overreaction that he currently has isn't so severe. Recorded sounds and flashlights are wonderful tools. -- And this is just one area in which his sensory processing problems effect his everyday life.

So you can't tell me that handing technology to a kid keeps them from being able to enjoy the great outdoors. The problem is often with the parents. As with everything in life, a balance must be found. And all of this judgment is usually heaped on with a big assumption that my kid is playing video games non-stop. Most people have never seen iPad apps for toddlers and preschoolers. This isn't the same thing as sticking your kid in front of the TV and claiming you're teaching him Spanish because he is watching Diego.

Let me start by introducing you to an app I bought for my son a while back. This is LetterSchool.

I am not in the least bit exaggerating when I tell you that within practically two hours of playing with it, he was actually writing the entire alphabet on his own, on paper. We bought it one evening about a half hour before bed time, and the next morning he was refusing to get on the bus for school, he was too excited about the letters he was writing and he didn't want to stop. I had to promise to call his teacher and make sure he could start "drawing letters" as soon as he got off the bus on the other end. This was all a few months after he turned 3.

Before we bought LetterSchool, we hadn't really started to work with him on writing more than just "Johnny". Even at that, we weren't pushing very hard. Suddenly every waking moment was consumed with letters! He had known his alphabet since before he could talk. Anytime you asked him where an "a" was, he could point to one for you. He had started reciting the ABCs after he began talking. Now it was all about writing them. When he wanted to write a message, he would have someone spell it out on a piece of paper and then he would copy it onto his own. The intense need to do it all the time has died down since, but it is still something he does on a fairly regular basis. And just because he knows how to write now doesn't mean that he doesn't still play with the app and practice. His handwriting continues to improve every day.

My child learned to write for $2.99.

There are other excellent writing apps, (this was just my favorite -- by far!) as well as many other topics including reading, art and several kinds of math. While you have basic 1+1 = 2 preschool apps, people have a serious inability to take into account the math involved in Angry Birds. I'm not kidding. There is a reason people become obsessed with this kind of game, and it isn't just because there is an abundance of cuddly plushes you can buy at Walmart to match. They are a puzzle and a brainteaser just as much as Sudoku or the crosswords. Think about what the game of golf requires in terms of calculations. Now narrow the physical aspect of that down to the simple movement of a finger across a touch-screen, and you have Angry Birds. You may not have the green and the weather or the slope of the ground to factor in when taking your swing, and you entirely eliminate the aspects involving your physical stance, exhaustion, and the club altogether. What you are left with is a trajectory game: one that becomes increasingly difficult through the addition of obstacles (and eventually new laws of gravity) and beatable through the use of an array of predetermined tools. Math, my friends. Math. And for an individual as visual as my son, that kind of math is a wonderful stimulant for the brain.

I won't even continue to detail the individual apps that have helped my son grow and learn as time has passed. Suffice it to say that the Christmas before we got him his iPad, he wasn't talking. It was purchased second-hand for $50, by the way, for all of those "OH-MY-GOSH-YOU-SPENT-HOW-MUCH-MONEY-ON-A-TOY-FOR-A-TODDLER?!" people out there. Both Steve and I would gladly pay full-price and more, knowing now how much it has done for him. Within a month, he was speaking full sentences. It has been an invaluable learning tool for our son, and we both know it will continue to be. For a child who struggles with aspects of social interaction, it has been and continues to be a huge help. All of this talk about kids being lost to such things because they get sucked in by their tech gadgets? That may be true of some children, but it isn't true of all of them. And if that is true of your child, maybe you need to reassess your parenting choices. Especially when it comes to children with special needs in their life, technology can be an incredible tool.

One last (slightly long) note: I know Johnny isn't old enough for it to apply yet, but there is always the debate about texting versus a face-to-face conversation. I agree that nothing should ever take the place of human interaction. What some people need to take into account is that there are going to be some people with either extreme social anxiety issues or those with Aspergers (like myself) who simply can't read a social interaction. I'm not saying that this means that we shouldn't keep having one-on-one social exchanges as part of our daily lives, but it should be taken into account that texting as an aspect of communication, (or in my teenage days, instant messaging) can be a serious attempt at having "normal" social relationships. When all anyone ever takes into account is the 1 negative interaction (miscommunication that wouldn't have happened if the conversation hadn't been in typewritten format) and never the 99 other positive ones, what they often forget is the track record of the socially awkward person that it involves. My score face-to-face would have been more along the lines of 40% bad, so to me, that 1 blow-up in text or online was soooo much better than the additional 39 that would have happened in person. But what happens? Everyone just blames technology. I'm not saying that sometimes the overuse of technology isn't at fault -- some people rely on it far too much, but there is also something to be said about the positive outcome that no one ever seems to see. In the meantime, I've had that many more positive social interactions than normal! Because I don't have to worry about the game you all play where you say one thing and mean another behind your masks of false emotion where no one ever has the face on that says what they are really feeling. (It is subconscious I know, I'm not saying you're all out to get me -- but it is something all humans do). I don't have to spend an entire conversation also paying attention to every person in the room and how they are interacting with every other individual. The looks you each give one another and who is reacting in what way? Because that is what my life is like... a constant reconnaissance mission where I'm observing every single glance, every slight motion, trying to understand, and none of it ever makes any sense. When I'm texting, I'm just texting. If you say something you don't mean, I have no way of knowing-- but at least I'm not busy trying to take in a million things at the same time. Technology gives me a break. So people who knock it can either shut up, or take a hike in my shoes for a day.

inconsistencies & vision

What is best for your child is to be completely consistent. They need structure and organization; your course of action should always be the same. We've all heard this from the moment that the topic of parenthood was even introduced into our lives, yet I'm not entirely convinced that it is true. On the whole, yes. But there are times when breaking the rules is just how the game needs to go down. I'm sorry, but I can't always justify sending my kid back to bed when he gets out of it 10 minutes after he has been put down if he is legitimately carrying the weight of the world on his shoulders and needs to work through a few problems to be able to turn his mind off and fall asleep. I think there is a difference between a stall tactic and the situations we as adults often find ourselves in, and as parents we need to sometimes slow down and be aware of that. Sure, 9 times out of 10 when he comes out of his room and neeeeds to talk to me, he really is just trying to stall. All 9 of those times he gets his butt scooted right on back to bed. But every now and then, he truly has a deep worry or serious thought that he can't shake. He needs help processing something so that his brain can slow down and let him drift off into blissful oblivion. That's when he needs a parent, not a drill sergeant. This is a part of him that is no different than any other kid.

~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~

I've come to the conclusion that part of Johnny's uniqueness is an ability to visualize some things that not everyone can. When you ask him what something looks like, he puts his hand up and draws a picture of it in the air. It wouldn't seem so off-kilter from what another kid might do, except from the fact that it is always how he handles showing you something, and it seems as though he continues to see the images suspended in air. He draws other things next to them, then refers back to the first one, pointing out similarities and differences. I can't see any of it, but obviously he can. It's like he has a huge invisible canvas that floats in front of him at all times.

I decided to do an experiment. With his permission, I drew for him. If I draw to show him what I'm talking about, (visually showing him my feelings, "I'm sad" -- something he often does for me, as we have talked about the fact that an upside down smiley face symbol means "sad") he has a very hard time seeing my picture. I have to be very specific, and even then he has a hard time seeing it as more than a set of scribbles. What dawned on me is that he can't see me picking up my "pen" and changing strokes. When I decided to write several versions of what my picture might look like on a piece of paper and ask him which one I had drawn, he picked out the one where I attempted to draw a frown without lifting the pen, not the actual frown. When he is drawing things himself, he can mentally see himself lifting the pen because he is the one doing the drawing. When someone else is doing it, there is no way of telling. I had been drastic about bringing my finger toward me to try and infer the moments when I was doing just that, but between his age and the general sense that it would only take the drawing into the third dimension, (he has drawn 3-D shapes for me in the air before) we ended the experiment before he could get too confused. The only time I know I can do it without confusing him is when I draw something that doesn't involve lifting my pen or that retraces/overlaps areas in order to never stray from the original figure (namely, letters and shapes). No art for mama!

Whereas so often I feel as though I have a good grasp on what goes on inside his mind, this is one area where I don't have a clue. I really wish I could see what he does.

Edit: 8:32pm: I amend my post from earlier today...

After reading what I wrote, my husband decided to sit down with Johnny himself. He found that by simply curling his fist into a ball every time he wanted to "pick up the pen" while writing in the air, Johnny saw it as exactly that. Without telling him what he was going to draw, Johnny instantly saw the stick figure person with the hair, eyes, nose, and frown. Whereas I had simply tried a circle with eyes and a frown, much like our circles with eyes and a smile, Steve had gotten him to see a much more complex picture by simply finding a way to signal to the kid when to assume he was using the pen and when he wasn't.

Mama may have been slow on the uptake, but daddy figured it out! I still want to be able to see through Johnny's eyes, though. I feel like he is seeing a whole visual plane that we aren't.