Vacation Anxiety

So last week, my family and I went on vacation to Disney World. We drove all the way to Florida from upstate NY, which wasn’t a major deal considering I work midnights and I’m usually awake at night anyway. Then again, it was a near-24 hour drive, so yeah it kinda sucked. Sleeping in the car was no picnic with my kids singing “Let It Go” over and over again for thirteen hundred miles.

 

Yes, I am fully aware that you are one with the wind and sky.

Considering my aspieness, you would think that being on vacation and messing up my normal routines would put me in a bad mood. And yes, I will admit that I end up missing my video games so much that by the end of every vacation I consider bringing my Xbox along on the next one. But it’s actually not that bad for me. I don’t mind being in a weird place because I know that the point of the trip is to experience somewhere new.

The one thing I do really need when I’m on vacation, though, is a “nothing day.” I’m fine with having lots to do on vacation; I just can’t have every moment of every day filled up with activities. If I don’t get any time to relax, then it just feels like work. And when I’m on vaca, bumming around in a cramped hotel room watching non-HD local sports and eating vending machine food is relaxing for me.

I am so there.

So, as I said, the family and I went to Disneyworld. I don’t know if you know this, but it seems to be a very popular place to visit. My GOD was it crowded. And it was in the middle of the school year! What terrible parents these people must be, pulling their kids out of school to go to an amusement park! Excluding us, of course.  🙂

Anyway, yeah, LOTS of people. But you know what? I handled it fine. My daughter handled it fine. See, it’s not really people themselves that freak us aspies out, it’s the social interaction that goes with being around people. Most aspies are perfectly fine if they can blend in anonymously with a crowd. That’s what Disney felt like;  it felt like walking through Times Square in New York City – tons of people around, but nobody paying attention to anybody else around them. It was great! We had a great time. The kids really enjoyed the rides and stuff, and my wife and I enjoyed being able to act like kids without looking creepy.

Shit like this don’t fly anywhere else.

The vacation was practically stress free, except for the Disney germs we all came down with when we got back home. I didn’t expect the most stressful part of my trip would be going back to work and having to talk abou my vacation with my coworkers. But that’s another post entirely.  🙂

Autism and Bullying

Bullying seems to be a hot topic nowadays. I’m not sure why all of a sudden EVERYBODY is all up in arms about this. It’s not like bullying is something new that kids just came up with this year, like listening to crap music like Lorde. Bullying has been around for quite a while. The first recorded use of the word “bully” occurred in 1530 (yes, I looked it up; I don’t spend all day making up fake facts for this blog, I’ll have you know), but the concept goes back way before that. There were even bullies in the Bible, for Christ’s sake.

Jesus likes!

Because of the nature of bullying behaviors, children on the autism spectrum at at a higher risk of being victims of bullying. Bullies often single out those who are weak or socially outcast and make an example of them. It’s not always about physical violence. The main motivation is an attempt by the bully to feel superior to others and to be looked at as being in a position of power. Due to the characteristics of autism (weak sensory perception, social awkwardness,  etc.), children with autism or aspergers are juicy targets for the bully to get what he or she wants.

A parent of a child with special needs is then faced with a difficult situation. Very often, children with autism will have difficulty communitcating to the parents that they are being bullied. The emotions that come with being pushed around are hard to understand; the child may claim to feel sad, tired, or simply hide their feelings in order to avoid them. It is the parents’ job to keep an keen eye on the child’s temperment and watch for any changes that may indicate that something is wrong.

Or just outsource the job to the Chinese.

Bullies prey on fear; they count on their targets being to afraid to report them or do anything about it. Children with autism are already scared and anxious to begin with. A bully doesn’t even have to work hard to intimidate these kids; half the job is already done for them.

Another reason why it may be hard for parents to detect when their child is being bullied is that the child may not even realize that they are being mistreated. To children with social deficits, a bully may seem like a friend. After all, it’s someone who is talking to them and giving them attention. That’s a friend, right? Doesn’t matter if that the “friend” is taking their stuff, slugging them in the arm, and calling them names behind their back. That must be what friends do!

“Mom! Tommy and I are gonna go play ‘Get Beat Up By Tommy!’ “

Now, it’s clear that special needs children are especially vulnerable to bullying. However, all of you special needs parents shouldn’t jump up on your high horse and think your child will always and forever be free of blame when it comes to bullying. Remember all of that anxiety and fear I was talking about before? Well, a funny thing about those negative emotions – they tend to send you child’s self esteem crashing faster than Healthcare.gov.

Obama no likes.

These drops in self esteem can lead to children with special needs becomingthe bully. If the child has trouble understanding how to address social situations, the chance of inappropriate behaviors evolving into bullying is higher. We can’t just look at our children as wonderful little angels and allow ourselves to be blind to the other side of the coin. If you don’t want you child to be bullied, you have a responsibility to make sure your child doesn’t turn into one.

It’s clear that bullying is a critical subject that should be discussed with our children. We need to teach our children to be respectful of one another no matter what the situation. Remember, kids grow up to be people; the last thing you want to be responsible for is letting you kids turn into assholes when they are older.

Family Business

Today I found myself wondering about my parents. Specifically, I was considering the possibility of either one of my parents having Aspergers. It’s common knowledge that Aspergers and autism seems to run in families. Could either of my parents have been an aspie?

When measuring the possibility of mental disorder, my mother comes to mind first. I love her to death, but I’m not going to deny that she is kinda nutty. She does possess some aspie-like traits: she is ritualistic, slow to adapt to change, and fairly antisocial. One thing that doesn’t fit, however, is her expression of emotions – if anything, she is OVERexpressive. Last time I visited, she got upset and tried to console me when I dropped an egg on the kitchen floor.

The funeral procession for the embryo was not at all necessary.

She might have OCD tendencies, she might not be a social butterfly, but I don’t think she has Aspergers. My father, on the other hand…

I’ve brought up the possibility of my dad having Aspergers to my wife before, and she has easily dismissed the idea in the past. “He had a good sense of humor, he was very sarcastic,” she says. “Aspies aren’t usually good with sarcasm.”

First off: Aspies can be good using sarcasm. I use it all the time. The problem aspies have with sarcasm is detecting it in others, not using it themselves.

Second: I don’t think she quite understands what made my dad so funny. The reason he was hilarious was because he would “act” serious when doing something completely crazy that nobody would ever expect. One example I always love to use is how he used to openly discuss his tipping plans with the waiter while the meal was still underway. My family thought it was so funny, how he would joke around like that.

The waiters found it hilarious.

What if he wasn’t joking? What if he just had no clue that that’s something that you aren’t supposed to do? Social awkwardness – check.

Another thing about my dad – I only remember seeing him cry once, when my mom was very sick and was hospitalized. Other than that? I don’t recall him showing many emotions at all. Home movies of us show him basically being there, every once in a while telling us kids to quit doing annoying things. I know he loved me, but do I have any concrete evidence showing an emotional bond between the two of us? Inability to outwardly express emotions – check.

There are other reasons that I won’t get into here, but what it boils down to is that there is a decent chance that my dad has Aspergers. Then, of course, I got to thinking…

What in God’s holy name were they thinking when they came up with this?

Then I got to thinking…

Hey, wait a minute… what DOES the fox say???

But then I started thinking…

I have some unresolved issues with my dad (I was not aware of them until after he died). Do I really want my son to have those same issues with me when he gets older? Of course not. So I make sure that he knows I love him, every single day. I do more than tell him – I show him. I show him by being there for him when he needs me, by being there when he doesn’t, by being engaged with him even when he tells stories that take ten minutes and six run on sentences to complete. I don’t want him to have to question whether or not his father loved him. I’m going to make that answer obvious for him.

And you know what? It’s EASY. My kids are part of a very small group of people in this world who I feel completely comfortable being real around, and connecting truly with. He may realize when he grows up that Daddy was a little strange, but he’ll never feel disconnected from me. I won’t let that happen.

This Is My Aspergers

I have written in previous posts a little bit about the history of my Aspergers and what it was like for me growing up, but I haven’t really gotten into it in great detail yet. Every aspie is different, comes from a different background, and has a different story to tell.

This is my Aspergers. There are many like it, but this one is mine.

I only became aware of my Asperger-ish tendencies a few years ago when my daughter was diagnosed, but the roots go back to when I was very young. When I was in preschool, I remember bouncing back and forth between friends, trying my best to connect with whoever was within proximity of me at the moment. I tried my best to mimic in order to be accepted; this works pretty well as a child, however I can remember not really having a sense of who I was. I would absorb the traits of those around me in order to blend in.

The defining moment in my young childhood came at age 6 when I was hospitalized for a severe kidney condition. I got sick on the first day of school, was rushed to the hospital, and nearly died. I was in the hospital for 6 weeks, subjected to blood draws and regular dialysis treatments. My family was devastated that I was so sick and scared of losing me.

The thing I remember most vividly is all the cool toys I had in my hospital room.

Coming up next on Pimp My Pediatric ICU…

Granted, I was only six, so my memory of the experience shouldn’t really be picture perfect. But don’t you think it’s a little strange that I have absolutely NO memory of the horrible medical procedures that my mother tells me I had to endure, yet I can remember with great clarity the Lego kits my dad and I worked on and the inflatable Superman doll that hung in the corner during my entire stay? I think my brain decided that it wasn’t going to connect itself to what was going on, and I must have checked out and gone somewhere else mentally during the rough parts. I still use this skill to my advantage from time to time. I don’t know if the stress caused my brain to adopt an overall emotional disconnectedness – virtually “causing” my Aspergers – or if it was my aspie brain that allowed me to get through it. All I know is that the experience had a profound effect on me and my mental processes. It’s like my super hero origin story.

Able to create soul-crushing social awkwardness in a single sentence! 

As I got older, I began to show more of what I realize now were classic autism/Aspergers traits. I memorized the bus route home from school, including street names; I even helped a substitute bus driver find the correct route on one occasion. I had a very rigid tv routine, watching my favorite cartoons every single day; I knew by heart when each was on and in which order. I would spend hours “racing” my Hotwheels cars, which actually meant lining up 30-40 of them one behind the other and moving them one at a time for a few seconds each. I would throw tantrums if I didn’t win while playing board games with my sisters. I would play ball in the living room by using a mini-bat to hit a foam ball aroud the house, completely oblvious to the risk of breaking things. I often played 2-player sports games by myself, switching between controllers to play both teams; I even kept stats and charted out seasons that I scheduled myself, long before games like Madden featured their own season modes.

The list goes on…

I actually hid the social aspects of my Aspergers pretty well during school. With the benefit of hindsight, however, the cracks begin to show. Bullies were constantly trying to get to me, only I was so socially clueless that I didn’t even notice. Eventually, thye pretty much gave up and moved on. One of my best friends (even to this day) was with a group of kids who would brutally make fun of me on the bus. One day the other kids weren’t there, so he invited me to his house to hang out. Oblivious Aspie Me said, “Sure!” I continued with my “blending in” strategy, getting along with many types of people but never really connecting to any of them. I had a small group of close friends, but even they were distanced from me; I very rarely hung out with any of them one-on-one.

“Thank God you guys are all here! I’m terrified of each of you individually!”

When I went to college, my isolation became official – I’m not exaggerating when I say I did not make one new friend during my four years in college. I tried a few times early on, but I just couldn’t make it work. In my mind, I had nothing in common with anybody at all. I had already figured myself as an outcast. Most of my social interaction came via the internet – where I could be whatever I wanted to be, take my time to measure my responses, and avoid the intensity of face-to-face contact. I actually met my wife over the internet during this time, and somehow she wasn’t completely turned off by my behavior when we met for the first time.

It was slightly less awkward than this was.

At the time, it wasn’t so obvious to my parents that something was up with their son. Autism spectrum disorders weren’t featured as prominently in the news as they are nowadays. But looking back now, and with the benefit of the knowledge I gained while working to get my daughter diagnosed… it’s pretty clear. My childhood is no doubt different from the stories of other spectrum children, but I’m sure it also runs parallel to them in many ways. I worry about my daughter a lot – will she have friends? Will she be happ? Will she be successful? Looking back on my story gives me a sense of peace. If I made it this far in the face of this challenge, then the potential of my daughter is limitless.

Aspie Attachments

A funny thing happened the other day. Our family is in the process of transitioning from our family van to a smaller, more fuel-savvy vehicle. My wife and I were talking about our plans for selling the van when my aspie daughter piped up from the backseat, asking if we were really going to get rid of the van. I turned to see her on the verge of tears.

Incidentally, this is the same face she uses when she wants ice cream.

She was extremely upset. She didn’t want us to get rid of the van; she didn’t know how else we’d be able to drive around! “I don’t want to have to walk everywhere!” she cried. She was so attached to the van that she couldn’t even imagine having another car instead. And understandably so, I might add – we’ve had the van for pretty much three quarters of her lifetime. That would be the same as me getting rid of something I had for the last twenty five years.

I can’t get rid of those. Those are my good pair!

I notice that I, too, often have strong attachments to inanimate objects. I’ve always felt compelled to say goodbye to every car I’ve traded in. I’ve named keychains of mine in the past… and present, actually. I get a little twinge of sadness when my click-pencil runs out of lead. The remarkable thing is that I feel so attached to these objects, yet I can’t get close to living, breathing people.

 

Emphasis on “living” and “breathing.”

I’m pretty sure my Aspergers factors in here, big time. I’m simply more comfortable with objects over people. Interactions with objects don’t come with the same stresses that interactions with people do – social anxiety, fear of judgement, rejection, etc. It’s easier to deal with the simplicity of objects that the complexity of the person-to-person social exchange, And, perhaps, there lies the solution…

Treating people like objects.

I’m a genius!

I absolutely love my new rain coat. It’s name is Todd.

Let’s Get Physical

There was one thing I was always thankful for after we got my little Aspie diagnosed – my little Aspie is a girl. Although her tantrums could be quite intense, they were more of the yelling/screaming type. I’ve heard that boys with Aspergers can have tantrums that become extremely physical, even evolving into fistfights. Luckily, K’s tantrums don’t go that far. She will scream and yell loud enough to hear on the street, but at least there are no holes in the wall in her bedroom.

It’s difficult to figure out the best way to handle a physical tantrum. When kids are smaller, it’s not that hard – usually the best course of action is to let them work it out, as long as they are safe. If their safety is compromised, physcially restraining them may be necessary. Sounds simple, but ask my wife how easy it is in real life. She had a knock-down drag out tantrum confrontation with my son the other day, and he’s not even on the spectrum.

Imagine this, but with less smiling and more screaming and flailing limbs.

This is all great advice, but kids have this really strange tendency to get bigger. I know… how dare they, right? The problem with this is that bigger kids bring bigger tantrums. Your child is bigger and stronger; you can’t just hold him down until he exhausts himself anymore. He fights back. He throws punches. Pretty soon, you’re no longer just worried about the saftey of you child but your own as well.

The most common advice I hear about this situation is to try and give you child a place where he can physically lash out without an increased risk of injury – for lack of a better way to describe it, a “rubber room” of sorts. I’m not saying to actually build youself an isolation room, but create a space where there are no breakables and the environment is generally safe. Once you child has gotten throught the necessary explosion, then you can provide loving support. Most people advise against intervening, especially if you feel you safety is threatened. It’s most important to protect yourself; you cannot help your child if you are injured.

Ok, kids! Time to get dressed for school!

I count myself lucky because I haven’t had to deal with this type of situation yet. Not to say that girls don’t have physical tanrtums; it’s just more common for boys to lash out than girls. But I have found out that nuerotypical boys can have tantrums that are just as strong as Aspie boys.

Good luck and be safe out there.

Top 12 of ’12

In honor of the culmination of the year 2012 (WE SURVIVED A MAYAN ALIEN ATTACK, OR WHATEVER THAT WHOLE THING WAS ABOUT!!!), this is a countdown of my top 12 favorite posts I made during the past year.

Yes, this is my blog’s version of a clip show.

Enjoy!

12. The Self Aware Aspie  (12/23/12) – how a diagnosis helps an Aspie and others understand their situation.

11. Feeling Out of Place (8/15/12) – I get the feeling that I don’t belong.

10. Friday Night Anti-Socialite  (11/3/12) – I am EXTREMELY uncomfortable at a social gathering.

9. Like I’m Not Even There  (4/6/12) – Nobody listens to my awesome ideas.

8. Perfectionism (7/15/12) – Why can’t everything be right?

7. The Dentist (1/25/12) – I suffer through a trip to the dentist.

6. Dunkin Donuts Ruins My Day (1/10/12) – It’s the little things that drive me mad.

5. Hi, Nice to Meet You. By the Way, I Have Aspergers. (10/15/12) – How does one drop the Aspie bomb?

4. I’M NORMAL!!! (for once) (10/16/12) – I surprise myself with my unexpectedly rational behavior.

3. The Challenges of Being an Aspie and a Parent  (6/28/12) – You think being an NT parent is hard?

2. Unseen Health Risks of Aspergers (2/23/12) – A doctor’s office can be a scary place.

1. Facing the Truth  (8/6/12) – Aspies will save the world!

To Each His Own Stim

Of all of the behaviors that encompass Autistic behavior, there seems to be one common thread – stimming. Stimming is short for “self stimulation” and usually involves repetitive movement that stimulates one or more of the senses. In Autism, it is usually seen as a response to intense stimuli. Not much is known about the reason for stimming; it could be a stress response, a way to burn off unfocused energy, or a kind of self-comforting mechanism.

Stimming is very common in Spectrumites, however the specific stim can vary greatly. My daughter’s main stim behavior is chewing/mouthing on objects. Other common stims include rocking back and forth, head bobbing, or skin pinching. Mine is picking and biting at the skin on my fingers. Sometimes the compulsion is so strong, I pick at my fingers to the point of drawing blood. Yeah, it’s that bad.

There has been a debate about how to handle stim behaviors. Should all stim behaviors be stopped in an attempt to make the person more “normal?” Or should the stim behaviors be allowed to continue, for the comfort of the Spectrumite? I’m very waffley on this issue – I think the best approach is a little bit of both. I think allowing harmless stim behavior is a good idea if there is no potential for harm or injury to the person.

For example: in order to help our daughter feel more comfortable, we got her a chewable necklace so she could chew and mouth appropriately when needed. On the other hand, I have been trying REALLY hard to stop my finger picking, because it’s obviously not good for my hands.

So I would be in favor of allowing something benign like hand flapping to continue, but I would certainly be trying to keep something like banging one’s head against the wall to a minimum. The goal is to try to keep the person safe, but avoid depriving them of the behaviors they feel they need.

IMHO

Just a little bit about me, and this blog, FYI.

I write this blog from a number of viewpoints. First, I write as a parent of a child with Aspergers. I have a 6 year old daughter who also happens to be the cutest little girl in the world (sorry to all of you people out there who also have daughters, but it’s true). She inspires a lot of what I write here.

Second, I write as a “medically informed person.” Notice I did not claim to be a doctor, nor did I claim to have all of the correct answers when it comes to medical problems. This blog is not meant to diagnose, treat, cause, cure, or worsen any disease or mental health state.

Third, I write this blog form the viewpoint of a person with Aspergers… presumably. You see, I was never formally diagnosed with Aspergers, but while getting my daughter diagnosed I began sensing a lot of… shall we say “odd, unexplainable behaviors” on my part. I came to learn that Autism tends to run in families, and things began to clear up a bit. After months of soul searching, I finally became comfortable with the fact that I have Aspergers. A diagnosis now would be redundant. A lot of what I write will end up sounding strange and unbelievable, but it comes from my inner feelings as an Aspie myself.

So I wear many hats when I type these posts up. First and foremost, I write these posts because I expect NOBODY to read them. That’s right. I don’t have delusions of grandeur; I don’t expect to be this massive blogger reaching thousands of people, spreading Autism awareness, and making the world a much better place to live in. I’m just using this blog to help express myself, figure out my feelings, and hopefully connect to the world a little better.

Now, if someone other than me happens to be reading this… awesome! Welcome! Don’t be afraid to comment or e-mail me at aspieblogger@gmail.com or follow me on Twitter (@mindofanaspie).

I just ask one thing of you readers – please don’t take what I say as the gold standard of facts about Autism. My posts contain my opinions based on the many aforementioned hats I wear. I may be commenting on something my daughter did, or something I read while reading about Autism research. I may be talking about some private feelings I have about how hard it is to try to fit in with you normal people. But please remember that all Sprectrumites are different. We are all unique. In fact, I fully expect other Aspies to read this blog and claim I’m full of crap. Just try to keep an open mind, and we all might learn something from this.

A Mighty Roar

It can be very difficult for parents of Autistic children to deal with, but this is a fact: tantrums are unstoppable. And in the case of children with Autism, the tantrums are SO MUCH MORE INTENSE.

If you are a parent of a child on the spectrum, I am about to tell you something you won’t want to hear: the tantrums don’t go away with age. I’m a full grown adult (sort of), and I still throw tantrums when I lose my keys.

The good news is that it’s not your fault. You may feel like you are causing the tantrums by either using discipline or holding firm to boundaries, but it’s not that. Sometimes it can be the smallest thing that sparks a tantrum. For me, it’s losing something. For someone else, it can be an uncomfortable setting (too warm/too cold/too loud/too quiet/etc.). Some kids can throw a tantrum over a broken toy. Some can go off because they didn’t get the right amount of chocolate chips on their cookie. It’s different with every Spectrumite.

So, how to deal with the tantruming child? Well, let’s start with what not to do. First, don’t tell the child to be quiet or to not be upset – this will only make the child feel alienated and “wrong” for being upset. Second – and trust me on this – do NOT let them “cry it out.” Tantruming Spectrumites very often get physical during tantrums and can cause harm to objects and themselves. If you just let them get it all out, you may end up with a broken lamp or a broken body part.

The best course of action is to hold the child tight and let them know everything is going to be okay. This is where wrestling skills come in handy. Your youngster is going to fight back; don’t take it personally. But, BE CAREFUL!!! Remember, you are trying to prevent harm, not cause it. So make sure your child can breathe and nothing is bending at any weird angles. Also, do your best to soothe. Speak in a soft voice; tell him you love him, that it’s going to be okay, or sing a lullaby she likes. Don’t expect an immediate response, but it will sink in and they will feel more confident in their bond with you. When your child (FINALLY!!!!!!) begins to calm down (AFTER 19 HOURS OF SCREAMING!!!!!), reinforce the fact that everything is okay, and s/he shouldn’t feel bad about going off.

Tantrums can be scary, especially for parents of Autistic children. But when you know how to handle them, you can get through them with at least some of your sanity intact.