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.

Death of Emotion

Dealing with death is never easy, even for the most socially apt and sophisticated person. No matter how intuitive a person is . . . no matter how skilled they might be socially . . . talking about death is always difficult. There's never an obvious good thing to say - except "I'm sorry" which falls drastically short.
You would think that a young man who everyone tells you has limited or not as sophisticated social skills or has 'trouble relating to others' would be the one who struggles with this most. In my family, Jackson was the one who handled it better than any of us. Myself included. Last week, the kid with the Asperger's led us all to a clam and rational place.

My grandmother died last week. She was 92 so it was not a huge shock, but she was in excellent health and extremely vital mentally, so it was a huge shock in that respect. She was my son's great-grandmother. They knew she loved them very much and they loved her in return. The biggest surprise during one of the most painful weeks of my entire decade was Jackson's kind, empathetic and simply attentive responses to those around him he believed were grieving. Yes, he was controlled. Yes, he was factual, but in the whirlwind of pain and emotion that any death creates - his clarity was like a security blanket. He logically asked what we needed to do and called multiple family members every day to check in - to make sure they were okay.

The last time we saw her was in August. My son reminded me that he was so glad he had the chance to see her. As I spoke about her body being transported to the place of the burial he reminded me not to be sad - because she wasn't there, she was in heaven - where it was better and she wasn't alone. As I fight back tears while I stumble through dinner, he reminds me that everyone dies - it's part of life.

Once again, my son has taught me so much about how to get through life in one piece, make sense of the events around me and communicate inside a tornado of emotion. Never have I been so thankful for my children.

Dentist

The Dentist has always been a fearful experience. I honestly believe it is for everyone because, when you think about it, who actually likes having someone scrape metal objects against their teeth? It's just not ever going to be fun or in any way even insignificant. It's a horrible experience.

For my son, it's no different despite the fact that he has had more than his share of dental work. Along with his Autism or because of it - nobody actually knows, he has a genetic abnormality. One of his chromosomes is missing the end. The displays that this particular deletion can cause is the enamel on teeth to be either entirely missing, form with holes in it or be very thin. For Jackson, it was the latter of the two, but not very severely. Certainly severe enough that he has always had a close relationship with the dentist.

When he was about three, I was severely chastised by a pediatric dentist who scolded me soundly for letting Jackson sleep with the milk bottle he patronizingly assumed that I allowed him and which had subsequently rotted the enamel off his teeth in spots. It wasn't until ten years later that we discovered that his dental issues weren't the result of my negligent parenting, but a less likely and more destructive chromosome deletion.

Thankfully, I fired that dentist for insulting me and immediately took him to another. Dr. Harold Simpson in Richardson, Texas. I cannot say enough kind words about this dentist, his staff, his willingness to work with the issues that matter to Jackson and take the time to understand from a medical perspective how best to treat Jackson as a pediatric and now a young adult patient. In short, he treats Jackson like a person, not a kid and is never patronizing or dismissive.
Most of Jackson's dislike about the dentist is anxiety-driven. He would have the same reaction to any dentist. Aren't we all the same in this respect? I know dentists makes me anxious. So when Jackson called me last Thursday afternoon from school and said, "Mom, I was chewing on a pencil and my front tooth broke off" it was my turn to have an anxiety attack. I immediately called the dentist - who agreed to see him right away somehow understanding how nervous Jackson would be. Since it was a surprise visit, there was no time to pre-medicate or treat my son's anxiety issues as we normally do. This made Jackson even more nervous, but the dentist handled it. He spoke plainly and slowly, gave Jackson some choices which allowed him to feel more in control of the environment and was done in just a few minutes.

My son doesn't like anyone touching his head, let alone stick their fingers in his mouth. But in true Jackson form - he headed straight into the anxiety - eyes wide open. No Novocaine, no painkillers, just questions, patience and acceptance.
Which is more than I could say for how I might handle the same situation would it were me.

You want me to what?

Halloween is not an 'Autism-friendly' holiday. There's just no way to make it that way.
The dialog that has inevitably taken place every year between my oldest son and I goes like this. At least - this is how I believe he hears my directions and requests and how I understand his responses.

• Put on some really annoying clothes - School clothes are a big enough battle for me. There's no way I'm dealing with a costume.
• Wear a hat or a mask, it's part of the costume - No way! Are you crazy? I can't stand anyone touching my head for any reason (hygiene, haircuts, weather protection) There's no way I'm wearing a dumb hat to get candy I don't like.
• Go to every stranger's house you can find and knock on the door, but don't go in - Why again?
• When they answer, scream "Trick or Treat!!" - Why can't I just tell them to give me candy?
• Say these "trick or treat' words which imply that you are requesting a choice that you don't actually have a say in -  Why can't you just ask for candy and be clear? 
• Don't tease the dog (if there is one) - How is this not the most fun again? You should try it. It's funny!
• Don't ask them what type of garage door opener they have - Again, I don't care about the candy. What I'm interested in is data, "The brand, you idiot, be specific!" 
• Don't ask them about their computer - What?!?! Are you speaking English?
• Don't tell them their clock is off or ask if you can wait at their door for 73 seconds because you want to hear theirs chime at the hour. (The other kids behind you waiting for candy are not going to bother you.) Of course, you've noticed it! - But I really don't care about the candy, the clock is MUCH more interesting. Even more so than the resident.
• Then you get candy - which isn't they kind you like. And yes, you have to take it even though you hate anything with artificial coloring in it - NO!
• Don't be scared, all the decorations are fake - How do you know? There's a possibility that they might not be.

And we haven't even gotten to the parts about why carving pumpkins is disgusting and or my pleas that he go with his younger brother simply to accompany him.
We haven't even gotten out the door and it's a battle.

Nope - Halloween is not for my son. Unfortunately, there are some holidays and celebrations that simply don't mesh with the symptoms and bumper guards required when you live with another who is on the ASD Spectrum. So, it's a choice. What and or how much do I have to force him to try to learn to do?

And you know what I keep coming back to? People with ASDs are not the only inhabitants of this earth who choose to participate in the holidays they enjoy and to avoid those they don't. I have known perfectly normal individuals that simply don't like Thanksgiving - so they go on vacation every year to a place where it's not celebrated. Easy enough. Why does it have to be any more remarkable that my son with ASD makes a similar choice?
Sometimes I believe we spend so much time and get so entirely enveloped in attempting to force these kids and others with ASDs into our conventional societal mold that we forget that they can and should be allowed to enjoy cultivating the individuality inherent in themselves. We forget that nobody is mainstream while we try in vain to make them be just that. So what if he doesn't particularly like or understand Halloween? I don't particularly understand why we celebrate the annihilation of an entire indigenous population (Thanksgiving). But, I've been trained to celebrate it anyway and every year, I'm as conflicted as the year before and I behave in this silly superficial manner and try to concentrate on the fact that I am with my family instead.

Wouldn't it be nice if people actually stood behind their beliefs and had the guts to say, "I don't like this"?

Again, my son is the one teaching me - not the other way around.

So simple.