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?

New Year - 24 times?

New Year's is a difficult concept for my son. It's more than just the passage of time, it's realizing that the concept of time and the way we measure it is completely inept and inaccurate. "Time" for my son - just is. It's not something that is different in one place from what it is in another place.
Of course, he understands that clocks measure time really don't do a good job of it. More, they serve as very poor yet tangible markers of the passage of time from past to present and then to future.

The New Year comes in parcels according to the boundaries of an imaginary line; the GMT (human drawn lines which make no sense). The line isn't straight, and follows arbitrary political or geographic boundaries - also determined by people. And while my son accept this, he knows it's not true. He goes along with the collective lunacy of the world's population and chooses to celebrate New Year's at the moment that it arrives in our particular time zone - as opposed to when it really arrives which is impossible to determine on a human level. Someone would have to know when the Earth started orbiting the Sun - the exact moment. Or better yet, the exact point at which 'time' began.
As far as my son is concerned, time envelopes the world. It actually happens all at once and simultaneously. It's people who have it wrong. The sun doesn't set time. Time simply exists outside the confines or constructs of humans and their relationship with Earth.

Celebrating New Years is no different than choosing to celebrate any other human defined holiday like Christmas or Memorial Day. But with New Year's the fact that this holiday is so conspicuously celebrated at individual times around the globe is so much more pronounced and therefore, so much more ridiculous for my son.
I've tried explaining it but I don't think I will ever be able to transform subjective logic into believable science.
So, my son has adapted. He chooses to celebrate New Year's at the time that it occurs when it reaches the US. "The Ball drops at 11 o'clock"

Certainty

Uncertainty is hard for some people with Asperger's. Whether it's the simple fact of not knowing or not having an answer that is precise enough to satisfy his or her need for exactness is hard to say. Sometimes, I'm sure it's a bit of both and less about the ratio between the two.

For my son, the areas where certainty cannot be compromised center around his social network - of all things. I know. I've been told thousands of times that people with Asperger's are socially delayed or that they somehow aren't as aware of social mechanisms. I'm starting to think that's a bunch of bull because my son's sense of social context is astounding and very developed - especially for a teenager. He just goes about gaining it from a completely different perspective. Maybe from a place that we don't recognize therefore we dismiss it.

Jackson needs to know where his younger brother is all the time. He needs to keep track of where his extended family members are. Are they at work? Is it their day off? Are they traveling and if so where and when will they get there? He just isn't comfortable unless he's sure about where everyone is.
Last week, Jackson's younger brother got sick. He went to the doctor and still wasn't getting any better. He was really sick with a high fever and flu symptoms for almost a week. Jackson was 'uncertain' to say the least. He would ask questions like, "When is he going to get better?" or "Is he going to die?" He needed to know - to be certain  - that his social network (the one that centers around the existence of his younger brother was and would always be intact.

For years prior to this my oldest son was physically incapable of letting his younger brother (age 12) go outside to play with his friends unless Jackson (age 15) could either, a). hear them in the yard or, b). see his brother with his own eyes. If his brother went to a friends house for a sleepover, Jackson would call his brother at least every five minutes to check on him - to make sure he was okay, that he was where he was supposed to be and to be certain that his brother wasn't in any danger. (After all, you just can't trust any old parent simply because they're a parent.) Somehow, my oldest believed that it was he who allowed the youngest to leave the house - albeit with a cell phone in hand - and interact with children other than his brother. It was a huge concession on the oldest's part - or so he thought. He would much rather have ridden his bike over to see for himself - to be certain - every 15 minutes if necessary.
He didn't care that this made life very difficult and embarrassing for his brother. His perspective and his certainty were all that mattered to him. His brother is that important to him. And Jackson would move mountains to be 'certain' that his brother is happy and close by.

So . . . what I'm wondering is how this young man with Asperger's - the one who is supposed to be socially inept in some way - is able to have such enormous outward concern for his brother. A concern beyond what most teen aged siblings either typically express or ever admit to in any social platform. And as well, that he is able to do so out loud, in public, with an almost venomous empathy and devotion and without any reservation or pretense. How is he so able to be so social and be so good at it when this is supposed to be the area that he struggles with most.
Maybe it's not him who struggles to communicate socially, but me who has been struggling to understand his methods.

Sleep

Enough seep is like emotional salve. It makes all the difference. This is true for most people, but for Jackson - it's the most critical aspect of protecting his schedule. He's not buoyant or flexible with regard to sleep. If he gets shorted, more coffee or tea cannot possibly make up the difference. Only more sleep will help. Without enough sleep, he has trouble coping with much. He's rigid, demanding and insufferable.

They say that sleep is when your brain recharges, reboots, and categorizes everything that happened during the day. For Jackson, getting enough sleep is critical because his brain does actually seem like a crash site when he doesn't. The pieces don't fit together anymore and everything comes out mangled.
It's almost like - when he doesn't - he's immediately thrown into a retrograde of emotional energy. He comes apart, can't control the connection between his words and his thoughts and is no longer able to remember what he's learned with respect to social conventions.
A few nights of good sleep will put him right back where he needs to be.

Jackson has never been one to say, "My stomach hurts" or "I'm tired!" When he was really little, the only way that I had even the slightest clue that he was sick was . by the way he acted. Even then, the changes in his behavior were so minimal, sometimes I missed it or attributed it to a behavioral response instead of a physical symptom. What parent wouldn't assume his or her two year old was acting weird by having a temper tantrum and instead think, "I wonder if he has an earache?" Only when the consistency of the change in his behavior was noticed, did I put two and two together and get him to the doctor. Parent-peers and family members would look at me like I was parenting with something comparable to a Ouija board when I would respond to remarks from teachers regarding behavior issues at school with,"Okay, looks like we need to go to the doctor and see what's going on."
If it weren't for the fact that I was right every single time - I'd say they were justified. But Jackson and his need to keep away from the edge was so good at covering up and or dismissing the outlier that is 'illness' - I had little alternative.
If he would have only been so kind as to run a fever, or throw up, or start coughing, but he didn't. Not once.

Virtual Security Blanket

We made it through a holiday. From my son's perspective, I'm sure it was difficult than enjoyable but not completely bad. There were extra family members staying at our home that demanded our routines be rearranged or even obliterated. Sometimes, entertaining company means that we don't entertain ourselves and life can get boring. Especially for someone who's mind needs so much more stimulation than everyone else's. 'Relax" is something that my son still has to work very hard to do.
We ate foods that we don't always eat, things that smell different and have textures that we had never tried before. We even went to a 'stranger's' house to visit people I've known since I was a child, but haven't seen in almost as long. My sons have never met them before. Everything was different.
The boys did great! Both of them; the younger protecting the older and guiding him through the social graces of interacting with kids much younger than he is. It's funny, how the younger will take time to teach the older in public, but in private will mercilessly pester him about his peculiarities.

For Jackson, going to the house of a stranger is uncomfortable to say the least. He biggest concern is; 'Will they have a wireless network?" which loosely translated means, "Will I have my security system in place?" For Jackson, the Internet is as close to his security blanket as anything. And I suppose, if I think about it, it really is a sort of 'blanket' albeit an ethereal one. The Internet provides him a comfortable, quiet place to go when he's feeling vulnerable, in jeopardy or too overwhelmed by the newness of his immediate surroundings to cope. As well, he is able to access this familiar space, this coverage, this comfortable space in some fashion from almost anywhere he may be or may ever go. He's always got it with him. It's perfect, He doesn't have to remember where he put it down last or look for it too hard. He knows it will be there for him. The Internet is like a virtual comfort zone that exists in a language he understands. As well, it has the capacity to answer the barrage of questions that only he can come up with as quickly as he can think them. No human can equivocate this. It's a 'home' when he's away from home.

I used to do battle over the Internet. I used to insist that he 'turn it off,' or 'do something else.' I simply wanted him to be able to walk away from his computer or his iPhone and I never understood with such clarity (as I did yesterday) just what this cyber-thing means to him.
Of course, I tried all the wrong strategies to help Jackson be comfortable in new places or away from home for any length of time. None of them really worked, because they didn't address his need to have something familiar with him in a way that he can manage and that doesn't make him appear to be too 'odd' or 'extreme' when he's in new social situations.

Again, Jackson has found his own way and insisted that this be something he's allowed to navigate. Again, I am in awe of his ability to adapt in a world that sometimes makes very little sense to me, let alone to someone who views it from an entirely different perspective.
Again, I've learned that the best way to help Jackson mature and make sense of his world is to be confidant in his ability to determine how best to go about that - to let him find his way and accept his choice - understanding that I don't know everything and his own sense of self is usually far more intuitive than mine.

Holiday Anxiety - Asperger's Style

The Holidays can be difficult for kids with Asperger's. Some people call them 'Aspie's' but my son doesn't really like this. Have you ever asked your child how he or she prefers this be labeled? Mine prefers; no label. You might be surprised at their answer. I thought Jackson might like to know that there was a community of people that he 'fit' inside of as well as a community of people that would willingly accept him as he is - a gifted, very intelligent and unique individual. I forgot that he's also a teenager and very typical in many respects; most important that he doesn't want to stand out as different than his peers. So, when I absolutely cannot think of another way to describe it - I use "Aspie", but I know he doesn't like it.

Most kids with Asperger's have difficulties coloring outside the lines, so to speak. Especially where food choices are concerned. My son is no different. Really, he is no different than any one of us. Everyone has food preferences and differentiating preferences so applying them only to those with diagnosed differences is really wholly unfair. For example, I don't like eggs -or bananas or tofu for that matter. Oh, and shellfish. So I would hate for someone to insist that I try to eat any of these items simply to appear 'normal.' We don't ask this of non-Aspies so why do we ask those with Asperger's?
With that said, I have to qualify that sometimes those with Aspergers's have preferences that stretch the bounds regarding food. My son can't stand the sound of people chewing, but I noticed that in restaurants, it's not as big an issue. Why? When I asked he told me that the background noises (kitchen activities and music) typically drowned out the sound enough that he can tolerate this unavoidable dinner or meal aspect better.
We play dinner music at home now. Works great!!
As well, my son has some more irrational food preferences like: No visible particles (parsley flakes or pepper) in sauces - or better yet - no sauce period, no chunks (visible pieces of onion, green peppers or the like in rice or pasta dishes. Croutons in salad are okay though.), no textural abnormalities (lumps in mashed potatoes and charred, browned exteriors due to barbecuing, frying or roasting or orange juice with pulp), anything with vinegar is definitely out (salads, pickles), and no nuts in anything. So with the holidays coming up, foods like stuffing become a nightmare because they are an amalgamation of everything he doesn't prefer.

We've been invited to a Thanksgiving Pot luck this year. I'm nervous about how it will go. How he'll be received and respected and how my hosts will react to him. There will be many people he doesn't know in a place he's not familiar with. He will likely be asking when we can leave for most of the evening. He won't 'know' what's in the food because I won't have made most of it. Worse, he will likely wholly but unintentionally insult someone by his reaction to at least one item placed before him. I'll end up bringing a few things that he will like to be sure there's something for him other than bread and butter.

So the task before me becomes two-fold. I will have to bridge the gap between informing my hosts that I have a son with Asperger's - a condition they will likely neither understand nor be able to empathize with - and respecting my son's wishes not to be made to feel a foolish, unusual kid in front of new acquaintances (there might be teen aged girls there). It's true, the minute I inform anyone of my son's differentiation - even if it's an attempt by me to help them understand and know him better - be able to accept with greater capacity, they will wield this information like the Hubble Telescope vigorously looking for other areas and markers within his personality that they can use and apply that will accentuate him as different. The result will most likely be that they will see him as a different human instead of seeing him as a alternate human. They won't remember that no one 'fits' the human mold well - even themselves. My grandmother used to say that, "One size fits all means it doesn't 'fit' anyone." She was so right!!! I will socialize less, check on him more and won't really relax until we are able to leave.

As the holidays unfold and most people stress about time tables, travel, gift-giving and the like. I will be buried under pretences of acceptance, community, family, routine and good will. The best gift I could ever receive would be that people see my son for the wonderful, considerate and truly remarkable person he is and stand in awe of the person I know he will become - regardless of whether or not he likes broccoli salad.

I bet no one else will be keeping track of what the other guests food preferences are with binocular-accurate attention.