The Edge of Existence

Take the edges off everything and make it completely homogeneous and this is how my son likes it - everything that is. Toast, steak, clothing, relationships, emotions, weather, meals - you name it and he likes it better when there are no outliers.

I'm learning to understand, but more important, appreciate this type of perspective. The middle of something is usually where the facts are - the bones of it so to speak. The edges of ideas are often where the stray concepts are, the notions that 'might be' less likely to explain things and the parts that really don't represent the majority. Whether that's a condition, a consensus or a concept, the middle has no rough edges that can taint the rest.

I'm getting used to my son's habit of removing the edge of the toast. I'm stopped trying to 'nicely brown and crisp' his fried chicken because watching him skin it at the table isn't very palatable not to mention - it's bad table manners. I no longer grill his hamburger for the same reason. Watching him try to 'shave' the char-broiled-ness off his is really more than I can take some nights. When he was little - he wouldn't eat the ends of the french fries. He also won't eat Icee Pops without smashing the crap out of them with the back of a wooden spoon first - so that the insides are transformed into a uniform slush as opposed to icy on the inside and melted near the outside.

I made Spaghetti for dinner last week. The sauce was a home made Bolognese version with vegetables and meat. I knew beyond all doubt that there was no way in Hell he was going to eat it. I always have to keep a jar of his favorite, homogeneous, "no-lumps or things" style sauce. We had company for that very informal dinner and my guest chastised me for preparing something different for Jackson.  In vain, I tried to explain that it was simply easier to do it this way than try for the ten millionth time to convince him that eh will not notice the two specs of parsley detectable in a half gallon of sauce.
In the middle of that conversation, I had an epiphany. I wondered? "Why am I apologizing to a someone who is obviously a virtual stranger regarding both Jackson's innate nature and the manners in which his particular Autism Spectrum symptoms are displayed?" Instead, I should have been asking her if she might like to reconsider staying for dinner if it made her so uncomfortable that she felt she needed to offer parenting instructions clearly outside of her realm of expertise.

At the middle of this issue is not Jackson's seemingly irrational notions about food. We all have ideas about what we prefer and what we don't. At the middle is the idea that I am his parent and it is my job to make sure that he gets enough food to satisfy the needs of a teen aged boy. At the middle is the idea that I don't like tofu so I don't eat it. At the middle is the idea that Jackson doesn't like 'specs' or 'lumps' so he doesn't eat them.

I guess when you look at things from the edge it's hard to understand what's in the middle.
I truly believe that most people spend their time gazing from the edge and never have enough courage to venture out into the middle.
Thanks to Jackson, I have and I get it now. He is SO right!!

Watch Me

My son has always - since birth - attempted to live life in a more structured environment than this planet provides. The tenuous-ness of his immediate surroundings are just not enough assurance for him. The laws of nature might be the only gauge that he can truly rely on. This said, 'Time' is his friend.

He learned to tell time at a very young age - around four. It wasn't difficult at all to teach him this abstract concept that most kids struggle with well into their third and fourth grade years at elementary school. I simply explained how a clock worked and what the increments around the dial represented. It instantly made sense to him. Jackson 'got it' before he started kindergarten.

He like time because it moves at a steady pace - regardless of what's going on - never slowing or quickening to accommodate anything. It's reliable and predictable.Two things that are very important to my son. And two things that he has enormous respect for. The fact that others don't or can't simply confuses him. As well, he can monitor it's progress by the simple act of wearing a watch. He monitors everything!
Because he loves time, he loves clocks. All types of clocks. Our home is filled with clocks of every sort as well as those that no longer work because he played with them. He doesn't have the heart to throw them away. He has clocks that chime, clocks that play tunes, Cuckoo clocks, Glockenspeil-type clocks, digital clocks, analog clocks, battery operated clocks, electric clocks. The clocks that irritate him the most are those that have second hands that 'jump' from one second to the next instead of passing around the dial in a continuous sweep of motion because time doesn't 'jump', it's an effortless and continuous motion. He wants the clocks to represent it accurately  - like it really is. Some clocks require that he wind them which is somehow okay - it gives him something to monitor. As well, there's a drawer full of watches for when he's not at home with his clocks. His clocks are as much a part of him as his red hair. He never takes off his watch and he always wants a new one.

When he was very little (age three or four), as a way of introducing himself to people, he would walk up to a person and grab his or her wrist (if they had a watch on) and check their time setting to make sure that it was accurate. If it wasn't, he would immediately point out the adjustment necessary.
I remember one occasion when he did this in particular. He was going to afternoon kindergarten class. We had just walked to his school and we were waiting outside for the teachers to unlock the doors. As was usual, there were other Mom's waiting with their children. Jackson grabbed a woman's wrist and told her that her watch was five minutes fast. She attempted to explain that she had set it that way on purpose. Of course, my son asked. "Why"? The woman explained that she set her watch fast because she was always five minutes late and was trying to figure out a way to be late less consistently - in other words, she was trying to fool herself into believing the time was later than it actually was.

My five year old son, in all his wisdom, looked her straight in the eye with an incredulous expression and said, "Why don't you just leave five minutes earlier if you know you're always late?" The woman looked at him and then at me with the same insulted yet epiphany-generated expression. She was speechless for a full two minutes.
Even at the young age of five he understood the boundaries between conditions that could and could not be manipulated. He knew you couldn't change time no matter how much you might like to.
As a result, communication in our house sounds different than it does in the outside world. I cannot reply to a question of his by saying, "In a while" or "in a few minutes." He needs, "at 8:37pm" or "In 7 minutes" because anything less exact might as well be nothing at all for all the good it is meant. Some adults still haven't learned to identify and respect these boundaries. He's right. Subjective answers really don't have any explicit meaning. There is no tangible data in expression like, "a while ago." What does that really mean? he wonders, "How long is 'a while' if it can have more than one definition?" -Smart kid.

Daylight Savings Time is approaching. For Jackson, there is no such thing, because it's just like the woman who tried to fool herself by setting her watch incorrectly - only in this case, the entire population decides to be ridiculous at the same time.
He wants to move to Arizona where he believes people have more sense. The same kind of sense that he has taught me to have - because I have been able to 'watch him' - literally.

The World is Full of Tshirts and Not One of Them is Mine

I'm sure mornings can be fragile for kids with ASDs. They are a time to re-establish routine, to make sure that the laws that governed the previous day still exist and that the speck of control that was perceived has not drifted away like the images in a dream.
Mornings that go well are a critical piece in forming an entire day that goes well.
In our house, we have learned to protect them. Because when my son has a crappy morning, the repercussions can last for days, turning everything sour.

Sleep is the most important ingredient to a good morning. Trying to function on less than eight or nine hours of sleep - for my son - is tantamount to trying to get Windows 7 to run on a Mac. It just doesn't work. The operating system is there and all the hardware is connected, but nothing makes any sense.

Oddly enough, shirts seem to be the key to a successful or completely disastrous beginning. Who knew shirts could create such a tenuous environment? My son might a drawer full of clean tshirts and nothing about that means that he has anything to wear. In this way, he is a completely normal teenager!! The problem is further down. They might not be 'right.' Or they may no longer 'fit' the mood.
Apparently, there are 'weekend shirts' which are different from 'sleeping shirts' (although I can't perceive the difference) and there are tshirts that he tried, but simply can no longer deal with. Then and only then do we get to the 'school shirts.' The smallest group and the most critical of any.

Shirts cannot be too bright - like yellow. They cannot have any stitching on them - at least nothing that penetrates the fabric that would be palpable from underneath. They have to be some combination of blue and red. No decals. Nothing that will make one area of fabric a discernibly different texture than another area. Tshirts have to be slightly too big - when you're growing an inch a month, this is really difficult to keep up with. Most important, they have to 'feel right.' This is the criterion that I have been unable to quantify. Sometimes, when I'm having trouble understanding 'right' it helps me to define 'wrong.' Unfortunately, I can't define either in this case. Some days I believe that accepting the boundaries of my son's choices is most difficult because I have no other choice but to resign to blind faith and total submissive respect where his clothes are concerned.
This would be hard for any parent, but it's something that I have learned to do. Let Jackson be Jackson.
It used to be that it made absolutely no difference to my son what anyone thought of his clothing. In fact, all through the second and third grade, he wore a shirt and tie to school. It was how he was comfortable.
Now, I have to make bargains just to even get him to wear long sleeves. (They get in the way of his watch.) No matter the temperature, he's in a tshirt.

It's true, there are times when both me and his younger brother feel like Jackson's needs rule the roost - so to speak. But I don't think they do. I think they're just more obvious because they disproportionate.
For most of us, given a choice of a drawer full of tshirts, we would choose one. If our favorites weren't there, we would choose an alternative. This is the point at which my oldest can't navigate. He can't choose an alternative, because to him - the aren't any. The only viable alternative is to not go to school (only because I won't let him wear a dirty one from the hamper).

Here is the difference as I see it. For my son, making choices about clothing is difficult. When you add that he needs to make these choices in an environment that he is truly uncomfortable in - aka "Mall" (loud noises, crowds, lots of distractions and lots of people) it's no wonder he picks anything. He's learned that I won't be satisfied until he makes a choice. He does it just so that we can leave and go back home where he's comfortable. At home, in the confines and security of his room, he can decide about his tshirts - chose those that won't create even more distractions during his day.

Gee! This sounds like exactly what we all call 'shopping.' The difference is that when we shop, we're able to say, "I don't like this one because . . . ." and fill in the blank. The fact that my son can't verbally, but knows instinctively is the ONLY difference.
So what exactly is it that we get so frustrated with as parents of these teens? It's us. Our ability or lack thereof to enter their world and understand their thoughts and how they make decisions. This is why I try to just Let Jackson be Jackson and know that he will choose what works for him and not what works for me. For him, a dirty shirt that he's comfortable in is better than a clean shirt that bothers him. It means the difference between being able to concentrate in Physics class or not. It's that simple. As well, who am I to decide what 'feels wrong' to him?
If you can, try to imagine all the decisions you make in a day having the same weight, the same level of importance. For my son, I am beginning to learn that in the same way that he treats every one equally, he treats choice equally. None are less important than any other. So picking out a tshirt is no less critical than deciding who to talk to. Can you imagine what this is like for them?

My advice is: When you find something that works, buy a lot of them. Who says he can't wear the same shirt  twice in a week? If it's clean and identical to another he wore previous, is the world really going to stop spinning?

My son is almost an adult. He does chores, he earns money, he prepares food. He will soon learn to drive. I certainly wouldn't let my son choose MY clothes for the day. That would definitely make for a bad morning.

Cheerleaders use FaceBook

Communicating with people who have ASD's can be difficult. Our social norms dictate that we have to learn to write letters - by hand and on paper. For most of us, these days, hand-written letters only arrive on Birthdays and at Christmas in the form of cards. Even these are sometimes pre-printed with a holiday message, maybe a family picture will be included and the addresses are a mail-merge gift from the God of cyber functions. Homework is all available online in eFolios but we insist that it be completed in pencil and on paper, kept track of and returned. We use Sony Readers, iPads and Kindle devices to read for pleasure to such an extent that the publishing industry is crumbling under the weight of flat screens. However, schools must use textbooks - with pages. There's probably an irrevocable contract to purchase them keeping some publisher barely in the black. Despite that eBooks, are easier to update, less costly to distribute and don't get lost or eaten by dogs, we insist on conventional printed and bound books for all students.

So why are we as an educating society so hell-bent on insisting that people who really don't like and are not comfortable with using paper, pencil, ink and White-Out (let's face it - we need it) use those same methods to communicate that even the adults who supervise and teach them don't like much? Especially when we know what the problems is? Is it really those with the disabilities who cannot learn here?

My son communicates better electronically. I've known this about him for 10 years now. At the age of seven, and despite the fact that almost everyone told me not to - they were afraid for his cyber-identity-safety - I established for him and email account, an IM identity and a FaceBook page. Almost as immediately as they were available, he began using the IM tool at home to ask very simple questions and initiate basic communication with me that had up until then been non-existent. Can you imagine how thrilled I was that my son was asking normal questions like, "What's for dinner?" instead of coming into the kitchen and plunging his hands into what I was making so he could feel it and know if he was going to like it or not?
I gotta tell ya - I didn't give rats that he was technically too young to have a Messenger account of his own - or be on the internet unsupervised. He was communicating - and appropriately. He was asking a question one time only and retaining the answer instead of becoming hopelessly distracted by the unspoken communication my face was providing.

Jackson is now 15 years old. FaceBook has made talking with peers go from indescribably uncomfortable to completely normal. For the first time in his entire academic history, he is asking to be removed from resource classes and be placed in general education curriculum classes because " . . . none of my friends are in special ed."
Hallelujah!!
You just can't ask for anything better than that!
And the icing on the cake is that after explaining why he is in resource classes instead of general education classes and what he needs to do to get out of those classes - he's motivated. He's talking to his teachers (using email) and really trying to find ways to make progress and where his education is concerned.

I have always known that Jackson will live his life according to his own agenda and priority. He will live with his choices and make very few apologies for them along the way. He will find ways to communicate that work for him as well as for the general public. He will do this because he is Autistic - because duplicity makes no sense to him - because the world doesn't offer him the same courtesy so why should he? - and because cheer leaders are on FaceBook and he's 15.

You just can't ask for your son to behave in a way any more 'normal' than that.

A Mom's-Eye View

I ran across this post today in a blog that I had never heard of. Her words reminded me that while I fundamentally believe in research to gain access into the mysteries of ASDs, I don't long for a cure. What I really want is to understand - to learn ways to cope, to learn ways to communicate that will make sense - to my son. I want to understand his perspective or gain some perspective through his eyes.

If he were cured, he wouldn't be the person he is today for as much as he is Jackson - he is fabulous and I wouldn't change him  - at all - not for anything.