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.

The falicy of "Parenthood"

I started this post a few weeks ago. I began because I had been watching a popular prime time television show about a family where one of the members has Asperger's. I have mixed feelings about this show. I have from the start. While I think it's great that one of the major networks is attempting to address this really troublesome and potentially dramatic and devastating condition, I also believe that, as usual in films, the whole pretense is so entirely scripted that to those of us who actually live this type of life every day in reality and not on a television set - it's a little insulting.

As with any reality that becomes fit for movie or television screen, some details are dead-on accurate and some are simply miles off target.
For example, sometimes the character that plays the family member with Asperger's gets the literal and vacant comments and awkward social interactions and language interpretations just right. There is an ethereal quality to his lack of concentration and his ability to capture and emit what it's like to live with someone who is more interested in what's going on inside his head than outside it in his environment that is remarkably correct. At the same time, huge discrepancies are more common. The Father will try to reason with his son - and it will work. The Mother will pat her son on the head and the son won't make some sort of guttural noise that means "I don't like people touching me - especially on my head" sound that everyone understands because they've been trying to learn this child's language for their whole lives and still they're not sure. The child will be able to sit down at a dinner table with a large group of family members in an overcrowded and conventionally acceptable holiday room where strangers are also present and it's noisy. And without being distracted by the strangers, intolerant of all the noise and comfortable with the closeness of the group, he sits and eats quietly. Nobody makes him a special meal because he won't eat most of what's on the table. Nobody has to remember that he doesn't like the sound of chewing so they have to turn the music on. Nobody has to remind the child that it's not polite to reach for something on someone else's plate. Nobody has to bring him back to the table twice because he's gone to check the weather. Nobody has to beg him to eat when there are other activities that are so much more interesting.

For most of us who live with children and or adults affected by Asperger's these types of normal behaviors mixed in with those more definitively 'Aspergian' are simply dreams. Every once in a while, our child will make an enormous leap of understanding about a topic that we've been working on with our children for what seems like forever and what is probably closer to years and we melt in the happiness and disbelief that our child's progress creates. Usually, it's just in time. It happens just as we're beginning to wonder if he or she will ever understand what we believe we need them to.

In one of the shows, the family was having company for dinner. As I would think typical, the character affected with Asperger's makes comments that are inappropriate but certainly not as inappropriate as those my own son has made or in public. The parent's reaction is one of surprise and horror. Really? At this point? The character is an older pre-teen and still his own parent (characters) haven't accepted him for who he is or learned to deal with these types of situations by doing a little pre-company work. Like explaining to their guests beforehand that their child has Asperger's and helping them to be prepared? Or better yet, they might actually talk to their child to prepare him or her for the company.

Yes, I know it's a beating. I have actually had to have this discussion so many times it's not funny. For the most part, people don't know what Asperger's is. Imagine! In this day and age. They know of it, but they have absolutely no idea what the label means. It's a total blank because they actually don't want to know..So not only do I have to warn them, I have to educate them. It's a painful process and one that can sound like I'm making excuses for my son when I'm not. I won't.

I guess the last straw, the reason that I was finally compelled to write about my concerns, was that on the last episode I watched, the Mother had an issue with the Mother of her child's peer and in her attempt to solve the issue she invited the other Mother over for sushi and wine while their respective children played - with the occupational aide - and it actually happened; without interruption, without incident and without the need for a complete re-think in strategy or complete cancellation after the event had begun. The Mothers were quietly eating, talking and drinking and the kids were playing - completely occupied with the same task and social engagement as their Mothers.
What I found remarkable was the network expects us to believe that this Mother, the one with the child with Asperger's had time to go shopping, make sushi, clean the house and do her hair. And that the other character (the son) wasn't having a fit about his shirt which was all of a sudden all wrong for no apparent reason, or that he might have simply decided not to participate in the scheduled event and would not be persuaded to change his mind by any means. Or, that the other child-character (also an Aspie) was able to come into a new environment and work with another person (the aide character) without any issues. That neither child suddenly had an issue with anything - like deciding to take his clothes off or going to the kitchen to get a snack or simply abruptly loosing interest in his or her playmate and walking away without any comment to do something more interesting, less social and likely something that would provide hours of distraction to his Mother - who was also able to enjoy her company for at least five minutes without interruption and fix everything with wine and sushi.

Life just isn't like that for us who live in the real Asperger's world. It never has been. It never will be and to imagine it seems an insult. Life with a child affected by Asperger's is a lonely and very unpredictable place. You can try to include normal activities, but for the most part, you have to be prepared for the fact that they may not actually get accomplished, be enjoyable or work out the way you planned. Eventually you will learn not to expect too much and to be happy and surprised when things do work out - when your child has a good day.
Maybe if the character's husband left her because he just couldn't handle raising a child who was different and she was left having to work instead of making sushi, shopping for wine  and hiring occupational therapists the show would seem more accurate. Maybe if not so many episodes had happy endings; maybe - maybe if the siblings didn't always have the maturity of a 40 year-old as teenagers . . . maybe if there wasn't a script.

Life with Asperger's is like having a script in a language you can read and or understand and trying to put on a show anyway. It's chaotic and unpredictable. This is what they should attempt to portray because this is how my life really is - and not just mine. This is as true for my son with Asperger's as it is for my son who is not affected. It's true for our family members when they visit and it's true for everyone who knows us.
I've NEVER had an afternoon where I had the time to invite a friend in for wine and sushi.
Are they kidding?

Uncertainty

I lost my job last week. It's nerve-wracking on a good day and to most rational people. However, in the current economy, it's downright frightening. I dreaded having to tell my friends. I hated that I had to tell anyone. Most, I really didn't want to tell my oldest son. I knew he would simply have a much harder time with this than the rest of us would - because it's such an uncertain situation and he needs to be sure - about everything.

It will be hard for both of us because I'll grow tired of answering questions that I have no answers for and he will ask more the longer my unemployement goes on. They will sound like, "When will you get a new job?" or "Where will you find a job?" and "How will be pay for what we need?"
How can I explain that I simply don't know the answers to these questions no matter how much I wish I did? How can I possibly try to convince him that everything will be okay when I have no tangible proof to that effect?
He will ask more and more frequently as time goes on and trying to ask him not to and explain why will not help at all. As he both becomes more anxious and attempts to immerse himself in his trouble tyring to find a way to deal with an untenable situation he'll have to ask. He's jus tnot capable of not asking - because things change and you can never be sure when or why. We have plenty of evidence for that, don't we?
With each day that passes, he will become less and less comfortable. He'll ask more and more often. There's no getting around it. I know he doesn't mean to irritate me or point out exactly why I should be stressed

I know he means well and will be essentially thinking out loud as he continues to ask these same quesions over and over. But to me it will sound like, "Don't you know what you're doing? Anyone else would have a new job by now." or "Are you sure you're worth hiring?"
At the same time he wonders if I'm doing all I can, he'll need to know that I'm still here for him despite that I can no longer be defined by any employment. If something so fundamental can change then surely the possibility exists that other foundational characteristics can change without warning too. He'll want to know that I'm not going to focus so intently on my job search that I can no longer pay attention to him or his brother. Or maybe I'll just stop paying attention for some other reason that makes just as little sense.

He'll want to make sure I'm remaining as balanced as possible.
He'll check on me during the day from his high school classroom by sending texts, "You okay?" He's such a sweetheart. How is it the kid with Asperger's is the one who knows that this is the correct way to behave toward someone who they can't help, but they wish they could?