Puzzle Pride Campaign 2015 Ground Rules

Hi, I just wanted to give you all some guidelines for this year’s…

PUZZLE PRIDE CAMPAIGN!!!!!!!!!!!

*cue the dramatic echo*

 

In past years, the winners have all been, for lack of a better term, high-profile. Which is fine, but I had originally intended the Puzzle Pride Campaign to be more accessible to the average Puzzle Piece. Whether this person is a friend, a care-giver, a family member, etc., is immaterial. I wanted this to be about YOU. So, this year, I’m giving more guidelines to foster the discussion.

1. All nominations must be emailed to me at jondorfman@aspieepilogue.com with the subject line: “PUZZLE PRIDE 2015″ by 11:59 PM on Sunday, March 15, 2015. NO EXCEPTIONS TO THIS RULE!

2. You may nominate up to three people for this award. You may even nominate yourself, if you so choose. You may NOT nominate yourself three times. Once you’ve used up your three nominations, they are gone. They are gone until next year.

3. The theme for this year (YES! We have a theme, this year!) is “A Source of Inspiration.” For this year’s award, I want the nominations to surround the Puzzle Pieces in your life who inspire you in any way, shape, or form. So, this means that the only people I should receive nominations for are people on the Autism Spectrum (Autisms, Asperger’s Syndrome, PDD, PDD-NOS, Rhett Syndrome, etc.). I want this to be about the people who deserve the most say in all of this: the people who hold a diagnosis, themselves, and inspire their loved ones in even the smallest of ways possible. Inspiration is inspiration, no matter the amount.

4. With this in mind, when you submit your nominations, make sure you have this person’s (or these people’s if you’re nominating more than once) permission to disclose his, her, or their disability(-ies) for the world to see. I don’t want to violate any HIPAA laws with this. So only nominate people who want the exposure.

5. Your nominations should also include a small blurb about why this person (for each person you nominate) should receive the Puzzle Pride Award in 2015. This is where you plead your case. What about him or her inspires you, and why should it inspire the rest of us? That is the kind of question you want to answer with this blurb.

So, now that you all know the rules for this year, I want to show you a sneak peak at what’s in store for the winner:

Web

 

Suffice it to say, I’m aiming for this year’s prize is going to be more personal and more tangible for the winner than in the past. You’ll definitely like what I have in mind. DEFINITELY.

Get nominating, people! We’re counting on you!

Negativity and How to Handle It Appropriately

Last week, I digressed for a moment to pay tribute to a personal source of inspiration for me. However, there was a snippet in there about negative emotions and the importance of letting them out.

LET ME BE CLEAR ABOUT THIS! There are right ways to do so, and wrong ways to do so!

This would be a wrong way to Duso.

So, this week, I wanted to suggest some ways to let these emotions out safely and appropriately.

1. Before starting any of these suggestions, you may find it helpful to talk to somebody you know and trust about what’s been bothering you. He or she (or they, if you speak to more than one person about it) may be able to help you and offer you guidance. Worst comes to worst, they can provide a shoulder to cry on. Just try not to discuss in public. Personal matters may be better discussed in a more personal setting. It’s up to you, though.

2. Take a deep breath and count to x. X can be any number you want. X could be 10, 100, 3, 50, whatever. It’s all up to whatever is most comfortable for you.

3. Go for a walk. You could walk for 20 minutes, a half hour, a full hour. Again, it’s up to what you’re comfortable with. Just let your loved ones know what’s on your mind before you do it, so they know you’re safe.

4. Exercise in general can be a good physical outlet. You’d be surprised by how much pent up aggression you can relieve safely just by getting some daily exercise in. These can be sit-ups, push-ups, lifting weights, going to the gym, whatever you want it to be. Just don’t overdo it, and don’t take it out on the equipment, either.

5. This may seem counterintuitive at first glance when someone else is causing an incident and making you upset, but hear me out. When this scenario happens, the other person wants to get a rise out of you. They want the power to control your emotions. Don’t give it to them. You can always walk away. You have the power to remove yourself from a tense situation before you become upset. If the other person sees he or she is not getting his or her desired reaction from you, this person is more likely to leave you alone in the future. This one may take more practice than the others, but it’s worth it in the end.

I hope this has been enough of a help to get you guys started. May you find peace with yourself, within yourself.

Another Inspiration Lost…

I don’t know how many of my readers know of RoosterTeeth.com or have ever heard of Monty Oum and his webseries, RWBY, but let me take a moment to discuss why I’m taking what I’m about to tell you so personally…

I used to be very excited about new TV shows, movies, and games that would come out when I was younger. I could spend hours sitting in the same position in front of the living room TV, just watching my favorite shows.

As I grew older, things just stopped exciting me so much. By the time I finished college and Harmonix finished releasing downloadable content (DLC, for short) for Rock Band, I felt like nothing could pique my interest that way ever again. Or rather, something would have to try very hard to do so. Enter RWBY.

I didn’t think I’d ever be that excited for anything so easily for a long time, but here was this brand new webseries from some animator I’d never paid much attention to before, and I was beyond excited for it!

RWBY got me interested in something again, at the very least. I would later learn that the series creator, Monty Oum, was an animating legend across the internet (mostly known for RoosterTeeth’s other series, Red VS Blue).

Now for the sad news: Monty Oum passed away two days ago at the age of 33. He left behind many loved ones (friends, family, co-workers) and many others who loved him (i.e., his fans). I wanted you all to know how much this has affected me, personally.

I don’t know if I would still have the interest and inspiration to keep writing and creating anything if I didn’t have RWBY around to pique my interest. It came into my life at just the right time, and it didn’t disappoint. To me, this news is incomprehensible. To die of those causes so suddenly is jarring.

So here’s the message I want to send you at this point:

Life is too short to wallow in negativity. Take care of yourselves. If you feel overwhelmed by negative emotions, here’s my advice to you: Let it out. It’s okay to cry if you have to, but get all that negativity out of your system.

Even if you do have to cry to get it out of your system, just remember one important fact: After the terrible storm comes the serene rainbow.

Get all that negativity out of your system, but remember to do it APPROPRIATELY. Please, I don’t want to hear any horror stories of readers who misunderstood what I’m trying to say, here. Please don’t lash out at other people, or hit and scream at them if they try to help. It may be better to let them know what’s going on in your world so that they can help you let the negativity go in a safe, appropriate manner. It’s okay to feel overwhelmed and to cry, but it’s not okay to get violent and boisterous about it.

So, now I’m going to leave you with a couple tributes to Monty Oum that I’ve found online:

RWBY Tribute to Monty Oum

by http://nijuuni.deviantart.com/art/RWBY-Tribute-to-Monty-Oum-511395670

For the full version of the song:

R.I.P. Monty! You are deeply missed!

The Aspie Epilogue will return in full next time.

I Want to Hear from YOU!

April’s right around the corner, and that means another round for the Puzzle Pride Campaign! I want to hear YOUR nominations for the 2015 Puzzle Pride Award!

To make things interesting, I’m going to work on a special surprise for the winner(s) this year. I’ll announce what that is when it gets closer, maybe sometime around March, perhaps. We’ll see.

For now, I want to hear who you guys think should win this year’s Puzzle Pride Award. I’m counting on you to make this work. Don’t let us down! It’s gonna be awesome.

Puzzle Pride!

Autisms: Labels VS. Diagnoses

I’ll be blunt: Labels don’t accomplish anything toward acceptance. Isn’t that what our end goal is, anyway? Acceptance? We’ve been fighting for awareness for so long now, everyone and their second-cousin is aware that Autism (or “Autisms” as new research would suggest) exists. So, I guess acceptance should be the next step.

I see many people use labels when they actually mean to discuss their or their loved ones’ diagnoses. What do I mean by this? Here’s an example:

Bill: Did you hear that Autism affects 1-in-68 people, now?

Ted: Yeah! My cousin’s Autistic.

I hope I’m not the only one who caught what was wrong with that conversation. What Ted meant to say was:

Ted: Yeah! My cousin has Autism.

But wait, Jon! That sounds exactly the same! What’s the difference?

Actually, it’s a huge difference! In the first example, Ted used a label to identify his cousin as “Autistic.” This implies that Ted’s cousin is nothing more than his diagnosis. Anyone who has been affected by ASD should know that this is not the case. People diagnosed with ASD (I call us “Puzzle Pieces” if you’re new to the blog) are diversely affected by it.

Some Puzzle Pieces are verbal; some are not. Some Puzzle Pieces have an acute attention to detail most of us could only dream of; some of us don’t. Some of us have a brilliant mind and excel academically, while others struggle with basic concepts. ASD affects us in different ways, but we are always more than just our diagnosis.

In the second example, Ted discusses his cousin’s Autism as a diagnosis. This keeps his cousin’s integrity as more than just a label intact.

Notice how the way he phrases it here: He “has Autism.” This implies that his cousin has his diagnosis; his diagnosis does not have him. He is in control of his Autism, and he’s not defined by it.

Hey, Jon!

Hey, Reader!

Aren’t you the one who calls your blog the “Aspie” Epilogue? Isn’t that defining yourself as a label?

Good question! I don’t see it as “labeling myself” so much as it’s a sort of a self-identity. Before you start raising the red flags, let me elaborate on that.

It’s not a self-identity in that I’m an Aspie, and it defines me. It’s a self-identity insomuch as look at all I’ve been through and I’m still standing. I’ve been through a lot because of my Asperger’s Syndrome, and I’m still standing tall. I’m still functioning, evolving, improving myself to be the best me I can be.

It’s not so much of a label as a badge to be worn with honor and pride that I can endure so much. That is why I call my blog the “Aspie” Epilogue.

My Asperger’s Syndrome doesn’t define me. Rather, I define my Asperger’s Syndrome through my life experiences. That, dearest readers, is the difference.

Ask an Aspie: Meltdowns VS. Tantrums and How to Respond to Them Appropriately

I’ve been waiting for about a month to write this particular post, but between needing time to myself and just needing to get myself back in action after the start of the new year, this was the soonest I was able to get this out to all of you. I apologize for that. It really shouldn’t have taken me this long to get my act together in the new year.

In any case, I’m back, it’s a new year for the Aspie Epilogue, and now is an excellent opportunity for that Ask an Aspie segment I’ve been meaning to write.

Before the varied assortment of Winter holidays, a page I followed on Facebook (up until this point, and this is exactly why I stopped following it) posted a link to an article with a video clip of the tail-end of what they called a “tantrum” from a child on the spectrum, which involved restraining the child. Both the page and the article championed this method of restraining the child face-down on pillows until he stopped screaming. I will not link to this article because I’m afraid it may give parents a flawed perspective of how to handle this kind of behavior. Personally, I think the only reason the child calmed down was because he simply exhausted himself and couldn’t carry on anymore. It happens; I’ve been there. I was once a child, too. I had many of these situations. Some were handled properly; some of them weren’t. That’s not what I’m here to discuss.

To provide some context to this child’s situation, the article mentioned that his mother allowed a video crew to film him as part of a televised documentary without explaining this to her son (RED FLAG #1). The moment they entered, the child figured out what was going on and had what I will term a “meltdown.” They called it a “tantrum” (RED FLAG #2). Their chosen method of calming the child down was to restrain him face-down on pillows (RED FLAG #3) and record the incident to share on television and social media, which is where I found it (RED FLAG #4).

Where to begin with what’s wrong with this picture? I guess I’ll just go in chronological order as I found the red flags:

RED FLAG #1: She didn’t explain it to her son.

Folks, any decision pertaining to a person’s disability, whether or not they ultimately get a say in the decision making process, should ALWAYS be discussed with that person so that they understand what is going to happen to them. Period. The more people are on the same page, the less likely people are going to be upset. I think if she had explained it to her son beforehand, this wouldn’t have happened to this extent, or at the very least, the anger would have been worked through before the camera crew arrived.

RED FLAG #2: Meltdowns vs Tantrums.

I’ll elaborate more on this after the red flags, but this was not a tantrum. This was a meltdown, and understandably so. To me, the difference relies upon the motivation for the incident, or what I’ll call the “inciting incident.” If the inciting incident is I want a candy bar, but Mom says I can’t have it so I act out in a public display, that’s a tantrum. If, however, the inciting incident is too many people in the room flashing too many bright lights and making too many noises that are too loud for me to physically handle, that is a meltdown. I believe the latter is what occurred in this instance, not the former. Too many people don’t understand the difference.

RED FLAG #3: They restrained him face-down on pillows.

I’m going to go ahead and be blunt when I say this: THERE IS A RIGHT WAY AND A WRONG WAY TO RESTRAIN YOUR CHILD WHEN HE OR SHE IS ACTING OUT! LEARN THE RIGHT WAY! PLEASE!

When I worked at the Kinney Center, we had to learn Nonviolent Physical Crisis Intervention (NPCI) and certify that we were up to date on procedures once per year. There are certain steps to take before resorting to NPCI, which if successful, will calm the child down before he or she acts out. If you need to resort to NPCI (as a LAST resort), there are certain steps to take afterwards to ensure that the child is calm, that you are calm, and to maintain a rapport and trust between the two of you. As for the actual NPCI, itself, there are specific holds that ensure that the child can still breathe properly, and that he or she cannot harm you nor anyone else. In fact, I’d be surprised if he or she could do more than pinch his or her own armpits in those holds. The key takeaway from this is that your child is not able to harm himself or herself nor anyone else, and you are not harming your child. I would recommend learning NPCI through the Crisis Prevention Institute (CPI) or a similar organization.

What you don’t do is just restrain the child willy-nilly in ways that the child may not be able to breathe or in any other way that might bring harm to your child. You certainly don’t do it face-down on a pillow. What are you trying to do, suffocate him? It doesn’t require rocket science to learn the proper techniques, so please don’t put your child in danger when trying to calm him or her down. Moving along…

RED FLAG #4: They recorded the meltdown and shared it with the public.

I know I’ve often said I don’t have anything to hide, but even for me, there are moments in my life I’d rather not relive. My various meltdowns fall verily under that category. Aside from the potential for cyberbullying or even bullying in general, they haven’t handled any part of this situation correctly so far, so to then trumpet it over the internet as the “right way to do it” concerns me for the sake of other children with ASD whose parents may not know better and try this for themselves. From a more personal perspective, when I calm down from a meltdown, I feel very self-conscious about my behavior during said meltdown, so why would I want any video footage of it floating around in cyberspace for all to see? I’m sure I can’t be the only Aspie to feel that way, either.

So, here’s my interpretation of the events as I believe they actually happened:

Mom brings in a camera crew for a documentary about her son’s ASD without telling her son. The camera crew arrives, sonny boy figures out what’s going on and melts down. Mom responds by restraining her son incorrectly, face-down on pillows while the film crew records the incident. Mom then shares the tail-end of the meltdown over the internet, thus shaving out the bulk of what actually occurred and making the whole incident seem more mild than it probably was in reality, conning countless parents into believing this is how to properly respond to a meltdown, all while calling it a “tantrum.”

So what is a meltdown and how exactly does it differ from a tantrum in the first place?

A tantrum is the acting out incident that occurs when somebody doesn’t quite get his way. The theory behind this is, “I didn’t get my way, so I’m going to give you a hard time until you acquiesce to my demands.” Tantrums don’t necessarily have to be exclusive to those with an ASD.

A meltdown is the acting out incident that occurs when somebody reaches maximum sensory overload, maximum emotional overload, or just a situation he physically cannot cope with and cannot figure out how to handle appropriately. Think of this person as a nuclear reactor having a core meltdown. The meltdown has already begun; it cannot be prevented. It will end in one of two ways:

1. The Three Mile Island Way: Everybody plays their role and does their job correctly that a full nuclear crisis is averted. The person acting out calms down and everybody moves forward the best they can.

2. The Chernobyl Way: The meltdown cannot be stopped and a full nuclear crisis commences. The consequences of this can seriously impact the lives of the person acting out and his loved ones for quite a while afterward. These consequences can include arrests, commitments to rehab, or just broken trust and relationships. *Personally, I’d rather end the first way if I had to melt down.

Sad to say, but I’ve actually resulted in both in my life. Fortunately, it only took ending the Chernobyl Way once to get my act together, but the unavoidable truth is it was preventable. Nobody knew how to prevent it at the time. I’d like to think we all in my family have learned something or another from that incident. I’m just glad nobody filmed it and shared it on the internet. The same cannot be said for that young boy who was blindsided by a camera crew thanks to his mother.

That, my dear readers, is the full answer.

Family Tragedy and Hiatus

I’m just going to say this right here, right now:

I’M TAKING A BREAK FROM THE ASPIE EPILOGUE UNTIL THE NEW YEAR.

Now that you’ve been informed of what, let me inform you of why.

Keep in mind this becomes more real and harder to type each time I say this, but a very deep tragedy struck my family last week. My sister informed us at Thanksgiving that she had finally become pregnant after many months of trying. We were all so excited for her and hopeful for the baby. My parents were now grandparents-to-be, and I was to be an uncle.

My sister called us Friday morning; it was the worst possible news she could have given us. She lost the baby through a miscarriage. So far, we’ve all been trying to stay strong about it. To be honest, I don’t know how much longer it will be before I finally break down and cry, myself. We’re all trying to be supportive of my sister and her husband as much as we can while we still process this overwhelming tragedy.

So, until I feel that I can stay strong enough to help myself, I can’t be sure I’ll be able to stay strong enough to help you guys. And that wouldn’t be fair to you all. So, I’m taking some time to process this, and I’ll be back hopefully sometime early January. Until then, may you find peace with yourself, within yourself.

For more information about what to say and not say to her, you may visit her blog post about the miscarriage at this link here.

I’ll see you next year. Be safe; be merry.