Growing up with Asperger's

Today is September 15th - his 16th birthday. It's hard to believe that my son is 16 years old today. He's an amazing young man and I'm so proud of him.

He started his day like all the rest with a shower, toast and cheese, a cup of tea and a quick check of the weather and financial markets.
He found his "Thursday shirt" and got dressed, put on his shoes and then to my great surprise, asked to stay home from school. I said, "No" - I mean, what would that sort of disruption do to his schedule and ultimately to his routine? They would be annihilated and he would be stressed and unhappy. I don't think he actually wanted me to say "Yes."
When I offered him a ride to school he said that he likes his routine of taking the bus and that it's important to him to stick to what he does everyday.

He is happy today. He received a bunch of 'Happy Birthday"'s on his Facebook page all viewed on his new laptop which means he has a new to play with.

Tonight - he will need a comfortable dinner (no sauces or mixed up foods), vanilla cake with vanilla frosting and some time alone to do his homework. This is his routine. Special days mean this has to happen even more than on ordinary days because he's anticipated them more. Doing something out of the ordinary is easier for him to accept when he hasn't considered his day yet - if it's just any old day.

I would have thought that like most teenagers he would be driving by now, but he's not really interested in it. His exact words were, "I don't think I'm ready for that yet. Can I wait?" Of course I told him that there is no law that states that anybody must learn how to drive. I explained that he can wait as long as he wants to, btu that eventually, it would become necessary so that he could go to and from a job or school.

Even so, can you believe it? How many other 16 year-olds have the self-awareness to realize that they aren't ready to deal with the randomness  and unpredictability of other drivers, the chaos of traffic and the multi-tasking skills required to navigate city streets full of bikes, cars, buses, pedestrians and the like? I'm not ready on most days. The fact that he realizes that he's not ready to deal with this at his age is so amazing to me. I'm sure that part of his reluctance has to do with simple fear of the unknown. But another big part is that he is looking at the larger picture.

He understands so much more than some kids his age do - as well as a few grown-ups I've met.

I Can't Do That Right Now

These words come from my son lately. They are his new defense . . . his new way of explaining why he needs to stick to his routine as opposed to veer from familiarity . . . or why he can't seem to find the means to add something new into his wardrobe.
Last week, I bought him a new pair of jeans in an effort to add a pair that wasn't stained with paint from last year's Art class or too short from last year's growth to be acceptable.
He won't wear them. He won't even try them on.

"I can't do that right now." These are the words I heard last week, last night and this morning when I asked if he would try them on so I know if they're going to be long enough (or if I need to take them back and exchange them for a different size).

The whole delay is my fault. I know better than to try new things with him - especially where clothes are concerned. I know that once I (he) finds something that works for him I should never attempt to add an alternative or change it - but I did. For some reason I believed I had to. He was growing and my wallet was shrinking so it was time for a new purchasing framework. I bought a different manufacturer of jeans in an effort to save $25. At this point, it would be worth the $25 I saved to have him in a pair of jeans that didn't terminally appear as though they were just exhumed from the depths of the laundry basket or the gutter. At this point, I'd pay $25 if I didn't have to hear, "I can't do that right now."

This morning there were no clean jeans; only the new pair still with the tags on them. I offered them as a plausible alternative knowing that there was none it only existed in my twisted mind. His response was, "I don't know if I'm going to like them" and that said it all.
It told me that school was one place where comfort really is essential because so much that's uncomfortable is going on he can't afford to give any up to clothing issues. And you know how new things are. Sometimes when you put them on they feel great just because they're different and after you wear them a while you realize that some aspect of their construction is irritating the crap out of you and there's not a thing you can do about it but undress - which isn't at all appropriate.
He was right to make this choice. He was completely correct to acknowledge his concerns and he is still right wait for a time when he has the wherewith all to deal with the issues that a new pair of jeans potentially contains without having to try and balance the demands of a new school year, new classes, new teachers and new subjects.
He doesn't care that he has a small wardrobe and he doesn't care if his peers see him in the same clothes twice in one week. He honestly doesn't care so long as he's comfortable.

I wish I had that type of self-awareness. I don't. I just accept that I have to do things that I don't want to. I blindly accept all of them simultaneously and in total. All of them - big and small. Whether it's eating what's on my plate or working at a job that is miserably unsatisfying on multiple levels or wearing uncomfortable clothing. It's what I do. I wish that I had learned to say, "I can't do that right now" at some point in my life, but it was never an option. I think I would be happier if I were just a little bit selfish on a few occasions. I know my feet would be happier if I threw out that one pair of shoes that really hurt after about 30 minutes of wear and I know I would feel better if I didn't try to eat yogurt from time to time believing for some reason that it's supposed to be good for me when it typically leaves me feeling nauseous, but I won't. I'm stuck with the shoes and the containers of yogurt that sit in my fridge - all of it.
 . . . not ot mention the drawer full of jeans and only two or three pair that I actually wear.

Summer

I haven't written in a while. Summer is busy - and different.

That lovely languid roll of days that summer promises is not always welcome in our house. Our entire routine changes from something to distinguish one hour from the next to a big, open empty space that is tough to define. School bell schedules, classes, bus routes and everything that marks days with consistency and certainty disappear for a few months.
All the most obvious signs of structure are gone. We even sometimes go on vacation to places where anything might be expected. Most people love to go to new places, to stay in places they don't recognize and to experience places that are unfamiliar. I know that this is precisely what most people really love about summer, but for an Autistic boy it's a nerve-wracking disaster.
My son needs familiarity. He needs to know that things won't change too much. He needs certainty and consistency. This is difficult on vacations, but not impossible. Retaining some consistency is most difficult for those who don't need or want it as much. They wonder why we have to stick to mundane and pointless activities when there are so many other more interesting things to do. We forget that for my oldest son, sticking to his routine where possible means that he gets to sidestep some of the anxiety that goes with abandoning familiarity - which means he retains the ability to participate in some new experiences. Not all, but some.

There are some activities that will simply never happen. For example, my oldest son will never get on a boat. No way! Not happening. I tried to take him canoeing once down a river that was literally as deep as his ankles. He was so nervous the entire time that he eventually threatened to get out and walk the rest of the trip. I let him - and he did. Once he was out of the boat, he was fine - walking down the river alongside the boat he was in control again despite that he was sometimes calf-deep in water. I've stopped asking him to go on whale watching expeditions or on ferries. I know better than to ask him about a cruise. It's just not worth it. Instead we schedule more sedate outings where he can participate as much or as little as he is comfortable and the rest of us can be entertained as well. We go historic places, we travel to family members towns and we spend time letting my son have his routine where he can. He needs his computer time to decompress and restore his brain to 'normal' after a day of 'unusual.'
Still and at the same time, he needs something to occupy his time and it needs to be something that is scheduled. Something that could be written down if need be - even a 'To-Do List" can be substituted if it's absolutely necessary - if there are no better options available.
It's not that he really wants to get anything accomplished. Instead, the issue that makes him anxious is that there is no schedule, no certainty to his day, no hard and fast, set-in-stone plans; so we have to establish some - anything.
Haircuts, going to the gym at a certain time, taking a book back to the library by a certain time, watering the lawn when the sun reaches a certain place in the sky and keeping dinnertime sacred and scheduled. All these activities mean that there is a rhythm to the day that is certain. It's the small rhythms that are important. the larger rhythms of life can be so less discernible and therefore create far less anxiety if they are not explicitly paid attention to all the time. It's the smaller pieces of time, those pieces that immediately surround us that he has to be sure about. If he can be sure about them, then the larger pieces will have been looked after well enough.

And ultimately, it's all about certainty.

TAKS Tension

All I asked was that he wear a clean shirt. Not one that he's worn, slept in and or retrieved from the laundry basket after a few days. This morning, of all mornings, needed to go well and it just didn't.

I feel horrible about it. Awful in fact, for not being intuitive enough to choose my battles more wisely, sad that I didn't have the ability to see the bigger perspective regarding the contents of the day (mine as well as his) before I decided to stab my battle flag into the ground and gulity because he may have a terrible day at school in part because I wouldn't let him simply wear a dirty shirt to school on practice TAKS day.

My son has never been overly concerned about what he wears. Well, let me explain that another way. He is not concerned about the same criteria that I might be focused on. He has a set of 'acceptable' shirts that he prefers. Delineating a shirt 'acceptable' or 'comfortable' makes it simultaneously impossible for my son to consider wearing one of the alternative shirts that quietly wait in his dresser drawer. In the most basic terms, he flatly refuses to wear any others. He would rather miss school than wear a alternative shirt - which is saying quite a bit if you understand how important his daily school routine is. This and his shirt routine must coexist.
As long as he's got one of his 'acceptable' shirts - he's fine. He doesn't care if it's dirty, paint-stained from Art class, damp, smelly, wrinkled or some other form of unclean that I haven't considered. If it's one of the good ones - it's all good. At least as far as he's concerned.
For me, it's different.

I typically insist that he wear a clean shirt. It's simple really. One clean shirt each and every new day. He has five or six in his acceptable stack so finding one that is both clean and acceptable shouldn't be a problem. Except that yesterday it was.
I've been busy. For some reason, I forgot to ask if he had a clean shirt before he went to bed last night. Such a minor oversight and one with such faar-reaching potential to create chaos. My son's whole day could be irreversibly shattered - all because of a simple laundry oversight. But nothing about this is simple. He can't just cope, wear a different shirt, choose and alternative, make due for a day, or deal with some textile outlier for the sake of making either his life, my life or the lives of the other residents in the house any easier. He doesn't seem to have the resilience and or capacity to understand that just a little flexibilty provides greater control.
Because; a.) Control is black and white. It either is or it isn't. b.) We all have criteria. Just because eveyone doesn't understand it, doesn't make it irrelevent. and c.) It's not my shirt, my day or my TAKS test.

I lost sight of what was important; getting my son through a diffficult day intact and with a sense of accomplishment and maybe even success. I lost sight of the big picture.
My son didn't. He kept his focus and fought for it even at the risk of placing his concentration in jeopardy on a very important day. But something tells me that my son will get over this set-back much sooner than I will.

Lost Trust

Trust is a huge issue for any of us. For my son, it's the only issue. Trust means that information is correct. It means that events are predictable. It means that everything else might also be accurate - but not necessarily. So when it's gone. It's completely gone an almsot impossible to reinstate.

As well, there are no grey areas in language. My son believes that people should either choose to say something that they literally mean - or not. Suggestion, alluding to or inferring information or ideas and thoughts simply makes no sense to him. He takes most of what he hears as literal statements of truth.
This is where the trouble starts and stops.

Last semester, one of my son's young teachers used a derrogetory name toward another student in one of my son's classes. The comment was relatively benign, not directed toward my son and was in keeping with common peer language used between students. It was NOT appropriate for a teacher to use.
I knew nothing of the comment or statement for weeks. He said nothing, divulged nothing and asked nothing but his grade in that particular class began to suffer. He was failing one of his favorite classes. That he was failing was surprise enough - but in his favorite class as well as the one he's most proud to be and excel in (because it has no accomodations) was a triple quandry.

In an effort to help him and discover what had changed to bring about this new pattern of failure I asked, "Is everything okay in  ---- class?" My son matter of factly told me what had happened and I was shocked; both at his detached attitude toward it and my intense and instant rage toward the same.
Later, when I had calmed down some I asked a few more questions. My son answered them all with the same technical expertise that I love so much about him and also said, "I just can't listen to her (his teacher's) voice any more.

So this simple and seemingly inert comment made toward one student - not even my own - had in seconds deteriorated the entire spectrum of trust that both my son had worked to establish on her behalf and that the teacher had unknowingly created on his behalf.
She said one slightly cruel, completely inappropriate and very immature word . . . and every shred of trust, security and integrity were simultaneously lost.
My son could no longer place value on anything she said or might say regardless of what it concerned; schoolwork, casual conversations, necessary instruction. It was all gone.

I'm sure the teacher did not intentionally destroy the faith of my student and would never do so intentionally toward any other student. But this is the difficult part of being in a classroom with so many different students. You never know how what you say is going to affect each and every person in your audience. With so many cultures, backgrounds and social elements in the mix, guessing the outcome of every single action would be practically impossible. Even under the best circumstances and removing every possible mis-step I doubt that any teacher could eliminate every negative interpretation of every word and action he or she chose to display.
Further, my son's reaction should not be restricted or assigned to the fact that he has Asperger's. Nobody enjoys being treated poorly - ever. No matter in jest, fun, by peers, superiors or whomever. Asperger's had nothing to do with this, the teacher did. She made a poor choice and lost credibility. Everyone's done something similar at one time or another.

The part about this whole scenario that Asperger's did have something to do with was my son's ability to tell me exactly what happened and then link his reaction to a specific moment in time where his perception of his teacher shifted. These are facts and therefore easy to determine using logical means. I asked, he told. he wasn't afraid of social retributuion because it's a very difficult concept for him to understand. He also didn't consider peer perceptions. This is another area that even if he did completely get it - he wouldn't really care.

Since he told me about his teacher's comment, my son's grades have improved. I was able to talk to him and the administrators at his school to find a way to try and reinstate some integrity for this young teacher, provide a learning experience to her and allow my son to find a path around this huge obstacle that trust creates or removes.

I wonder how many students were affected who just didn't say anything - to anyone.

Autism Speaks Transition Tool Kit

What kind of tool kit could possibly prepare me to deal with a loved child who has the possibility of schizophrenia to look forward to?

There is nothing.

However, Autism Speaks has recently assembled and placed online a fairly comprehensive Autism Tool Kit for children and families of children affected by Autism who are between the ages of 14 and 22. I might find helpful - or at least parts of it.

If nothing more, the toolkit will at least remind me that there are resources that I know of that are supposed to provide help, advice and services that I might need one day.
It's a little short in the legal advice area(s), but - nothing's perfect.

You may find it helpful too.

You can download the Toolkit for yourself here Autsim Speaks Transition Toolkit

Is it Normal?

This is the question my son asks me more than any other.

"Is it normal?"

No matter the subject or criteria, he needs to know; to establish a baseline, to know he's not the staggeringly different version of a human the he believes he might be because other kids have told him so.

Isn't it just vaguely but profoundly sad that he is so aware of the fact that he can't always tell the difference and most people take similar situations for granted as 'normal'? At least he's learning that maybe he can't trust the entire population of opinions that are launched at him every day by his peers.
What is more sad is that I'm usually so hesitant to describe anything as being 'normal.' Yes, there are behaviors that are more common, traits that are more popular and ideas that are more widely accepted. But 'Normal"? What is that? Really? Down at the foundation of the definition, what is "normal"? I tell him there isn't a 'normal' where Asperger's is concerned because he's so much better than 'normal.' He's definitely not normal. He's so much better.

I have two sons. The oldest has Asperger's and the youngest doesn't. I would hesitate a long time before I called either one of them, "Normal." Unless, of course, you are talking about the most basic human traits; two arms, two legs, torso, head, walking, talking, eating, etc. Neither one of my sons fits in the 'normal' criteria.

My oldest has always been more defiantly different than others. He has consistently challenged my authority, my sensibility and intelligence. He doesn't see a problem with this. He also doesn't understand how it makes people feel to be subjected to it. It seems normal to him that people should simply say what they think; no more and no less. Why would anyone need something different? Shouldn't this be 'normal'?

My youngest, like many siblings of those with Asperger's is wise beyond his years - sometimes beyond mine. He is mature for his age as he tries hard to be the older brother and teach my older son to navigate the social land mines of high school. As well, he is more helpless as he vies for the extremely thin bands of attention that his Mother can provide due to the continuous needs of his older brother. Add to that I'm a single parent and the bands of time become even narrower. Its' difficult for both of us - for all three of us. He wants to be patient but finds it hard in the less sure environment of '13-ville.' He is tolerant and accepting yet rigid and needy. He is a contemplative perfectionist. He is definitely not a normal 13 year old.

And here I try so hard to be a normal parent. Why? Nothing about any of this is normal. It only seems normal to us because it's the only life we know.