Tuesday, October 16, 2012

Tickets bought for Denver to meet Stan Lee

This will be the greatest update ever. Not only did we surpass our goal, but we used that to go ahead and get his tickets for the convention, autograph, and photo for Stan Lee. All that's left to do is find a hotel room and reserve it.

I sold a big chunk of my HeroClix collection and added 200 bucks to the mix. With that I bought my wife's convention entry (because what was raised covered mine) and have 70 left over (estimated after hotel and gas) for food and a little fun at the con besides just standing in line to see Stan Lee.  So it does look like this will be a success.

Denver is still having a rocky time, but we are pulling all stops to make sure he gets the best help he can. Doctors, therapists, and a new school IEP are just the beginning.

The donation button will remain active until the week we go to the convention. So if anyone does want to chip in toward Denver's time at the convention you can. I have been given message that a couple of you fine people wanted to do that. Here is the LINK back to that blog post.

I am humbled and grateful beyond words for what you all have done for my son. Because of you, I will be able to give him one of those rare memories that can help shape a child forever.

You know, being a child with a disorder that affects how you interact with the world around you is not a cake walk. Growing up to be a functional adult is a major and tedious challenge. Issues like context, body language, and basic social skills get lost in a dizzying mix of sensory issues. Discipline issues are hard to understand without lots of practice and very clear information. You may be very intelligent, like my son, yet emotionally regressed or late in development. Not fun. Not a picnic. What's worse, you have a nagging sense that something is constantly wrong. I know I did as a child and my son has demonstrated that he gets the same feelings.

"Why can't I understand things right?"
"Why am I such a freak?"
"No one likes me."

All of those things come from social stumblings that cause confusion. Our kids have the challenge of learning past all that and becoming adults who can handle their conditions. To realize that seeing life from lateral views that break context can be a gift as much as a curse. Once you understand it and learn those extra social skills, it becomes a gift.

"Not only do I see what you are saying, but I see another route you may not have thought of."

That's an example of turning that lateral view into that gift. No, not everyone will be able to do that, but it's the best goal you can hope for. That's my opinion any way.

Having my son meet a man who proves this creative lateral way of being (along with being my son's celebrity hero), well, how do you do better than that for a real life example?

GenCon 2004 Child's costume winner!
So I thank you good people, I thank you all. Thank you for sharing. Thank you for praying. Thank you for donating. Thank you for just hoping. May you all be blessed.

Friday, October 5, 2012

A Question for you fearless parents out there on Autism in school

Today we are discussing my son's grades and I would like you fearless parents to chime in and tell me what you think! Pass this around and share it. The more input the better.

As many of you know, my son was recently in the hospital for a week because of suffering psychosis that made him hallucinate and hurt himself. It made him rage at everyone around him and I say "suffering" because I mean it. He also hated himself for it. He blamed himself for it. He didn't understand what was happening to him.

Now there's still plenty he know he could have accomplished if he put himself to it, but it was random when he did.

All that being said, we have rules about bringing home an F. There still must be consequences for consistency. The main area of consequence that seems to hit home is losing his DS, and computer games. He is obsessed with his DS to the point that he incorporates video game play into everything he does. A common autistic trait, actually. And he doesn't go completely out of control without his DS. At this point he seems to want to do what's right to earn it back.

Here are his grades:

Conduct: F
Reading: B
English: F (this is the class where most of his rage seems to come out but is slowing down now)
Spelling: B
Writing: Unsatisfactory (not because of difficulties but raging and refusing to even try)
Math: D
Social Studies: A
Science: C

We know he can do this.

So here's the rub.

The current vote is that he loses his DS until his next report card. He has to show us that his grades are improving and are no longer Fs or Ds. That's 6 weeks. I wouldn't have too much problem with that if it weren't for the fact that he had to be hospitalized.

So I have two counter ideas and want honest input (no put downs please!):

A: Cut the punishment down to 2 weeks flat.

B: Use his conduct grade. We get review of his conduct grade once a week. I could hold back his DS until his conduct grade shows up at least a B. That alone could take three weeks, but would give him something shorter term to aim at.

I have nothing against disciplining my child, I just don't want to use a wrecking ball to drive a nail. I will also say that it is easier said than done. So what are your thoughts my friends? Please chime in and share!

Monday, October 1, 2012

An open message to Stan Lee

Dear Sir,

You know heroes better than anyone in the business, but you don't know this one and I would really like you to.

Denver Justice Wilde was named after the best man and brother I ever knew who was tragically murdered in 1991. So, right from this little man's name, you know he's something special.

DJW was born 3 months premature, and still came out with full lungs and screaming to life. From the very start he was overcoming hurdles. He also had mild hydrocephalus that he grew out of on his own.

As a toddler he developed fits that could not be calmed and started hitting his head nonstop. We didn't know what we were dealing with then but it troubled him. He even asked me one day when I was intervening on one of his episodes, tearfully; "Daddy, why can't I stop?"  He had to wear a helmet for a year while we got meds adjusted to help him stop hurting himself.

At 3 years old he was diagnosed with autism.

At 3 years old he was also making up his own superheroes. There were two of them; Skunk Boy and Diamond Crystal Robot. He even made his own Halloween costume for Diamond Crystal Robot out of cardboard and later out of other costume pieces.

Also from 3 years on up, he developed an uncanny ability to build things out of cardboard. He would make entire cities from cardboard boxes and other pieces he scavenged from us. He had no fear of going up to some clerk in a shop to ask if they had any cardboard boxes for him.

Not uncommon in autism, he didn't potty train until he was 5 and attending Kindergarten. For all our efforts, he finally just overcame his fears on his own. Another hurdle beaten.

He proved he could be in a mainstream classroom too, after we moved from Lincoln NE. to Sheboygan, WI.

In 1st grade his teacher told me that he couldn't learn the material. By the end of the year he proved her wrong.

At the end of  2nd grade he did similar though his teacher already knew there were special things going on with Denver. By the end of the year he taught them something new.

Not long after we moved to Sheboygan, Denver had a lesson in death. His name was Zach and we considered him family. He was killed in a car accident at 19 years old.

Also, before he went into 2nd grade, he went through the divorce of his parents. During his 2nd grade year his Grandmother died on his Mothers side of the family and then his Grandfather died on my side of the family.

It took a lot of support and we (myself, his dr and school staff) were ready to support him. He always seemed to bounce back. For such a little guy, he's been through a lot.

In 4th grade he did so well that he earned an award for keeping a B average through the year. He was also invited to the school spelling bee for being amongst the top three spellers in his class and the top ten for his whole grade.

Now, he's going through a hard time. He's unhappy with himself and we are scrambling and struggling to help him. He gets angry, then he gets angry with himself for his own mistakes. He's hurt himself and had to be in the hospital to readjust his medication. He's still struggling and down on himself. We're applying everything we know and can research in techniques to help him. This can happen when a child is trying to learn how to cope with mental disorders. He feels like a freak (his own words) and we know  he's not.

Now there's an opportunity, a very rare opportunity. In November it may just be possible to have him meet one of his celebrity heroes. Hist topmost celebrity hero next to Matt Smith from Doctor Who. He could meet you at the New Orleans Comicon, just a few hours drive from here in Monroe. If I could get him to meet you, I know it could be the morale boost of a lifetime for this 10 year old.

If I could get him to meet you, get a photograph and maybe a signed book to frame and put on his wall. He would have the memory of a lifetime. I could show him that awesome things can and will happen if you put your mind to them.

And I also want to say that this is totally about him. I'm not coming to pitch my universe, artwork or writing. I'm coming for my son. Nothing else. If all I can do is maybe get you to shake his hand, I know what the impact could be. It could alter his course or at least really help with that.

And I'm willing to lean on my cane (the docs think I have MS) and stand in that line just like everyone else. But you are more than welcome to step out of your way if you want to. But I'm not asking you too. I just want you to know him. I hope that when you see his little face, you might remember him. Because having you say "Hi Denver" as he walks up would really, really blow him away!

My son doesn't know that I'm setting aside dignity to ask for donations for the trip on the internet. He doesn't know that I'm selling a chunk of my collection of HeroClix on Ebay for this specific cause (but he does know I'm selling). He doesn't know how much I'm putting into this.

Some said I should tell you why this would be beneficial to you. My answer to that is a question. When would helping a child (event with just a handshake) not be beneficial to anyone?

So maybe, if you see this, you'll know my little hero and the challenges he faces. I truly hope so.

I have great respect for you in even reading this. I do hope that we will make it. Thank you for your time and hope that all things are going well for you.

Sincerely,
David J Wilde