And yet we are blessed

This is a really tough blog to write. I'm going to explain something I haven't yet because of several reasons. As I explain this, though, I want you to understand how blessed we are because of the assistance we have had and the people who are working with my son now. Yes, we are blessed in spite of the situation.

I used to be able to order and give out free stuff in my Galaxy Zento biz. I can't now. I've told people that we are bent over a barrel and there have been some medical issues with myself and my dear wife, but I haven't explained this part of the story. Why? Because I'm not looking to bitch or sob. But I have contained this long enough that I really can't just stay shut down over it any more. I need to talk. There are names I still cannot say, so forgive that and just bear with me.

As many of you know I have a super 13 year old son with autism. He's a great kid and we are so proud of him every day. He's gone through so much. Right now he's in a "private school" that specializes in his educational needs. The reason our family has no money for any extras (and barely enough for some essentials) is that we are paying 298 dollars a month to put him through school.

It could be worse, but a wonderful, wonderful company fronted half the years tuition. So why don't we have him in public school? This is the hard part. The part where I can't name names. But it's like this; about two years ago, my son had to spend a few months in a hospital for the heavy stress related injuries caused by the school system. Without going into a ton of details, it's as simple as that.

I've been asked why I can't afford to buy copies of my own game or pay for pro artists etc, well that's why. And frankly, my son is just a little more important than how they think I should try to start my business. But that's just a side frustration. I digress.

Sue them? No. Believe it or not, that would actually hurt quite a few people. I spoke to a very good attorney who won a case for another family against the same system over 5 years ago. That system owes said family over a hundred grand and has yet to pay a single penny. Not only that, but the system will retaliate and drag my son's current school under a microscope to "see if he's getting proper education there". That would hurt every student there that this wonderful school has helped. So, the way we are doing this is the best way we possibly can.

We live by circulating credit cards, not having cable, and keeping it at the bare essentials. And it's totally worth it. My son has been helped so very much, that I love that place. I would rather be house poor than see them hurt him. Because they told me, to my face, that middle school here would not follow his IEP and they had no fear in telling me that because there is just no damned enforcement here. And my family is not the only special needs family they have done this with. They scare families away so they don't have to deal with them.

So, for you IEP warriors out there. PLEASE don't ask who they are. I won't tell you. If you find out, please don't contact them, you will hurt us and countless other families. I just needed to talk it out. I know many of you will understand.

What saddens me is how much some people don't understand (like the elitists of Kickstarter and board games who ran me off). Finding out only that I'm disabled was enough for them to say I was full of excuses and to go away. God only knows what they'd say about my son. Again, side frustration. Sorry.

But we never give up. I fight to show my son that it's always worth it to keep going. I'm so proud of his accomplishments and overcoming. And before anyone asks. We never told him to blame his school system even though he's fearful of certain people if he sees them in public. He sees his time at the hospital as something he needed to help aim in the right direction and learn important life skills. He does not consider himself a victim, rather a growing boy with his own difficulties. Now we just have to figure out what we are doing about High School once we have him caught up, because if we can't move, he will be back in that system again. Not sure what we'll do about that.

Autism and Back to School

Across the nation we are officially back to school. Maybe a few aren't, but most are. Going back to school means change in schedule and likely a few meltdowns and tantrums. I'm writing this today to touch base on a few reminders that may help you through the transition.

Remember what you learned last year and the year before that. If you've done this more than 3 or 4 times, you should be prepared for resistance. That won't make it any more fun to deal with, but better prepared thinking than not. Consider techniques you used last year and use them again this year.

Don't engage the tantrum: This is especially true with autistics. We can be a very argumentative bunch. Kids already have this angry debating skill. Do your best to stay cool and not react to the tantrum. State your expectations and then drop it. Apply consequences after you get what you want out of the situation and when everyone has calmed down.

Don't apply consequences before going to school if it only further triggers your child into a fit. I have direct experience with this. The idea is getting your child to school, hopefully in a mood that won't destroy their school day. Leave discussing their behavior and any consequences for when they get home. "Remember how you used all those swear words this morning? No video games tonight." This way, you got them to school and gave consequences at a time where you have more time and control.

Remember to reward the behaviors you want. If your kid is handling transition better than last year, tell him! Be happy with what he does right and praise it. Give rewards. A good reward system is always important, even if it isn't worth a hundred bucks. You don't have to spend lavish funds to give rewards. The simple things can be very effective.

Give down time after school. Don't expect your child to go straight to homework the second they walk through the door. He or she has spent the last 8 hours struggling to behave and jump through school hoops. A break after school is welcome and kind. Set up a routine. Offer half an hour of break time to do what ever they want (save anything they can't do because of behavior) with the knowledge that it's homework time after that. My son actually prefers to get right to it, but he always has the option of that after school break.

Hopefully, these tips help you handle the new transition that we all have to wade through. Age doesn't seem to help, so we must be vigilant parents. Have tips you'd like to share? Post them in comments!

Do you or your kids love heroes? Add the Galaxy Zento page! Books and games for ages 8 and up are available. The work of GZ is dedicated to showing our autistic youth that you CAN DO even with a few struggles. Life get's better so never give up. The GZ page is loaded with cool artwork and updates!

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!

Autistic student: Reeling them in for homework

Staying on task is hard for many of our spectrum students. It's even harder when the topic at hand isn't their main interest or an interest at all. There's a lot of redirection involved, especially at first and early in the year. It's frustrating, mentally taxing and can leave you drained. It can still pay off, though, so it's important to never give up.

The first problem we face is the time of year. It's only the beginning of the school year so this is a change in routine. It's not a small change either. There are many expectations that just weren't there for the summer. Try as you might, even with some extra activities and camp, you just can't recreate those expectations (on your own anyway) during off-school months. So this will be a period of adjustment with new routines. Thankfully, we have been blessed this year with good mornings in the way of getting up and getting dressed without fits. And now he's learning to make his own breakfast (cheers!). So, as years go by, improvements are quite possible.

The second is making the switching of tasks through the day part of his routine. It's all routines inside of each other and he balks at them. My son has had difficulty calming down for class in the mornings, (no doubt because of all the sensory input from excitement and hustle bustle) and has had to leave class a few times to recalibrate. I will say his teachers are on the ball with him. We are blessed to have such proactive teachers this year. But for all of our kids, we have to remember this goes hand in hand with number three.

The third is major sensory input. Crowds of children are loud and noisy. Hallways echo, and there's constantly someone bumping into you. At some ages, our kids are starting to put on deodorants and colognes and our sensitive kids will smell this at a distance. Kids with hygiene problems will be there as well and add to the mix with smells of their own. Not all of them will be triggers, but some will be and likely have been for some time. And let's not forget temperatures, those can have drastic effect too. Especially heat as it increases irritability.

Now I get to homework. It's another area of routine that we know our kids hate. It's more school after the school day has let out. What kids wants that? Well, it's a fact of life and they have to do it. For us, toward the end of the day, my son is more embroiled in fantasy from holding back all day (or being steered back to reality all day) and he just wants to play. Bringing him in from fantasy to get started on that homework is kind of like reeling in a really big fish. It's a fight for a bit, but once he's in the boat it gets easier.

The next issue in homework is getting overwhelmed and giving up repeatedly. He still has to learn to slow down and take his homework or any problem a bit at a time. He wants to rush, skip steps and be done. This is pretty common of our spectrum kids. It's especially common with Asperger's or ADHD kids. You get the idea. Ours may throw a fit and close down. We give him a break, but he can't go back to play or have privileges until he does that homework. So, piece by piece it gets done. It can be tedious and tiring for everyone involved too.

Handwriting is still a vexing issue too. It's like having something to concentrate on inside of everything else. My son is working on it, but it takes as much redirection and do-overs as anything else. Sometimes, by the time he has to rewrite something, he's forgotten the what the problem was and has to rethink it too. That's frustrating for him. I'm sure it's the same for many of our kids. Think about it, how much can your brain juggle?

It's easy to feel like this will never improve, but the truth is, that it can. If he's able to keep trying over and over again, then he may and likely will improve. That's not a guarantee of course. But, look back over your child's school history and make it appoint to notice the improvements. Has your child improved while moving up in grades? Then there's distinct hope. Has he improved despite lack of support or in the face of other difficulties? Then there's major hope.

So here's to moving on in a new school year (or getting started for many of you). Keep your chin up and never give up.

Anatomy of a schoolyard bully

Anatomy of a bully, what kinds are there? Does it make it any difference in how you deal with a bully to know where they're coming from? Maybe so. Nothing can change the fact that bullying is wrong and cruel. Nothing can change the fact that schools need to have a proactive stance on bullying. I think it's worth a look however, to try and see why the bully is partaking in his or her behavior. What's causing them to act out? To me, it seems that there are five types of schoolyard bully and these are totally my own definitions. Feel free to add your own views in comments.

The Angry Victim: This child is angry and hurt from some other issues that the school may not know about. He or she is taking their anger and pain out on others. They may be victims of bullying from larger kids, siblings or abusive parents. What ever the case, they need intervention and help.

Cruel: This is a child who has learned or been inspired somehow to be mean because they consider it "fun". This is the worst type of bully and should be looked at closely for possibilities of serious mental disorders.

Authoritarian: This child thinks they are somehow an authority or need to be the Sheriff of the school yard. They may be somewhat athletic and study in martial arts. They excuse their bullying by claiming they are "teaching someone a lesson". The sources from this could stem from any of the other bully types, but it makes them more dangerous because they truly think they're bullying is "justified" and they have the authority to do what they are doing. Could be a classic narcissistic trait. Leaders in college hazing fall in this category because they think that pledges must suffer to join the fraternity.

Discriminator: This is a bully more likely to commit hate crimes over race, religion, sexual preferences, or just being different. They commit their bullying because they think their target is somehow a lesser being and doesn't belong. This can go strongly in hand with Authoritarian and may often be combined.

Follower: This person is a bully by default and association more than anything. They may not even want to be a bully, but they are too afraid of the lead bully to do anything about it. They go along with bullying to avoid being the next victim.

We already know what happens to victims of bullying. They suffer loss of self esteem, post traumatic stress, and rise to risk of social outcast, drug abuse, and suicide. But what about the bully who is allowed to carry on without intervention?

Bullies who grow up learning that they can get away with the behavior risk falling into criminal lifestyles. They learn that violence or abusive behavior is acceptable and that only grows the longer it continues. Of all the bullies, the one who grows up to be the most dangerous is the Angry Victim. Since they are a combination of bully and victim they grow to be jaded and resentful. They carry all the risks of the victim with the possibility of being the one to explode and take others with them. Even their own families.

Next to this is the Cruel bully who does it for fun or entertainment. They will be abusive to their loved ones and use people for personal gain. It's been considered that several serial killers may fall into a category like this or the Angry Victim. Both could fall into criminal lifestyles easily with gangs or worse.

So, when it comes to preventing or taking any action against bullying, it's helpful to remember that both sides will hurt in the long run if nothing is done. Bullying hurts everyone and leads to broken lives on both sides. Knowing the source of a bully's behavior may help to intervene and correct. Again, there is no excuse for bullying, but the more ways we can find to combat it, the better.

The effects of restraint

As I've been writing my support blogs, I've found some areas get repeated. Those are often worth repeating and additional insight. They're worth keeping up front in our minds as reminders of their importance. Kind of like bullying or Halloween safety. Today it's about the use of restraint in meltdowns or other behavior.

First, I want to remind everyone that the proper use of restraint is more than just how a child is held or how restraint is used safely. It's also about when restraint even should be used. Restraint is a last resort only for physical protection of the child and others around him or her. The importance of this cannot be emphasized enough. The first line of defense or action should always, always, always be verbal. That's not taking extremes into account, but may prevent extremes from becoming the norm in a child.

Behaviors that do NOT require restraint would include; breaking a pencil, ripping a piece of paper, stomping feet or being verbally defiant. For that matter general defiance should never be responded to with restraint. Restraint must never become a disciplinary tool. That defeats it's purpose, which is only to protect.

Behaviors that should involve restraint are; head hitting, attempting to stab self or others with a pencil, flailing fits that could harm others or the child, violence that is a direct and fully recognizable threat. Not just tossing a book across the room either.

A singular act of defiance, like throwing a book or pencil, is not an action where restraint is required. If they start throwing everything, which makes it a repetitive action that doesn't stop with verbal or softer approach, that could be a restraint worthy situation.

I want to touch base on an important effect of restraint and it's a significant drawback, even to proper use. One effect I've found in research and reading is that restraint always makes the situation worse before it gets better. Why is that? I think you will find that most of our children on the spectrum are very sensitive to their personal space and anything that touches them. Things that touch or invade space without consent or by surprise can get some interesting and negative reactions. The action of being restrained, not only invades personal space, but adds to already overloaded sensory issues.

This isn't to say, "don't ever restrain", rather to keep this effect in mind if you are going to apply restraint to a situation. The child in the situation will feel worse and act out more before they calm down. That is a natural reaction to such intense sensory trauma. Yes, I said "trauma". Too much restraint, or misuse of restraint can be severely traumatizing. Sensory overload is already like that by itself. Sensory overload and stress overload are like your senses having a seizure event. Have you ever known anyone to have a non-traumatic seizure?

Because of this, the after effect is generally an exhausted person or child. It takes a lot out of you to have your body whip into high gear and hold like that for any amount to time, especially several minutes to as long as 45 minutes. Just 3-5 minutes feels like an eternity. I haven't seen a child go through a 45 minute meltdown, but I've heard of it. I can only imagine that child being out of action for the rest of the day.

So restraint, at first, will momentarily increase all effects of what the child is suffering that makes restraint necessary in the first place.

Now consider what it's like to anticipate being restrained. How would you feel, if you went into class with the conscious thought that you may be held down on the floor today? How would you feel if that was your thought every day? How would you fare if you already had an emotional disorder and that was stressing you out every day? That can be the effect of improper restraint and restraint used as a punishment. That added stress, makes it more difficult for a child to "behave" than without. That child already has a stressor in place that they cannot control and pushes them towards their personal limits of daily stress. This is more than simply learning to behave because of consequences of our actions. This is in excess of anything normal.

When my son throws a toy, I take it away. That's a natural consequence. I do not pin him to the floor. That would not be a natural consequence. Not anywhere in life.

My son has, years ago, had fits where he would bite himself or head bang. In those instances, where verbal failed to redirect him, I did scoop him up and hold him to stop it. He would escalate because that was the natural body reaction, but then, in time, calm down. I still remember the time around being 3 when he looked up at me and wanted to know why he couldn't stop. He recognized there was a problem, even at 3. Kids know and remember. We would do well to remember that ourselves.

Dealing with frustration and emotions

Emotions can be intense issues for those on the spectrum. Just because we don't always show emotions doesn't mean we don't have to cope with them. High stress emotions are the hardest, especially if dealing with breaks in routine or unexpected events.

Frustrations need early coaching and support work. Learning how to stop and take a few deep breaths and think about our next actions can be a challenge.

For example, a child is playing with toys but time for the school bus is coming up in fifteen minutes. Even forewarning can trigger a negative response. When that happens with my son, what ever he throws a fit over gets put away immediately. With some things, if he's cooperative, it can stay out until he gets home from school. He knows this and most days it works well with him.

Mostly the trigger is that change in events and interruption to what he's currently doing. It means switching tracks and that takes daily practice. I have been known to interrupt what he's doing in checking on him, just to give him that practice. It's going to happen a lot in life, especially at school or later in life in jobs and social interaction.

Recognizing when an emotion is overpowering is important too. It's okay to take a break and remove yourself from a situation when feeling overwhelmed. I employ this practice with my son as well. Signs that he is overwhelmed and needs a break are things like swinging his fist, hitting furniture, throwing a toy, shrieking, or clawing/biting himself.

I discuss with him that when he feels the impulse to do these things is when to take a break or stop and take a few deep breaths before doing anything else. He knows that it's not okay to hurt himself and that throwing things or swinging his fist could hurt someone else. Even so, this takes lots and lots of practice. There is no fast fix for these feelings or behaviors. Even with medications, my son still needs this practice. It is the coming years and crucial areas of school like Jr High, that I hope for this practice to pay off. Other support areas will be less for him at that time. So it's important to have behavioral practices in now.

Picture day

Well, today is picture day at school. What that means for us is dressing up and looking nice, but that's not all. It means extra care in our morning routine to make him presentable.

As it is, I don't even brush his hair until minutes before we walk out for the bus. That's because it has a better chance of staying that way. If I brush it early, he rubs his head on the floor or wraps in a blanket for play time and it's completely undone.

Then there's coaching that needs to be done before he goes. I tell him exactly what will be expected and that he needs to be cooperative for pictures and the photographer. Fortunately, he loves having his picture taken in general. So hopefully that means he will be eager when the time comes.

He didn't want to put on his nice clothes today, at first. He usually picks his clothes is why and that changed routine for him. He likes having his choice of clothes. Breakfast isn't usually messy, but it's a risk. The biggest mess risk is taking his vitamins.

He doesn't like to chew his vitamins without a mouthful of milk. That creates mess possibilities galore. I try to get him to just chew and swallow but there must be a texture issue with the gummi vitamins. Yes, we have tried all sorts of vitamins and he doesn't like the texture of any of them. These are the only ones I can get him to take at all. And he needs them because his little body is hyperactive in more than just behavior. It goes through sustenance and vitamins just as fast.

But all that is done now for this morning and he's not torn to shreds. His clothes aren't wadded and soon I'll help him brush his hair. Looks like we'll have a good picture day after all. Please feel free to leave comments about your morning challenges and share your own experiences.

Bullying in the 2010/11 school year

With every new school year it bears notice that bullying must be acted upon and prevented. Kids will tease each other. To a point that is natural, but should not go unchecked in teaching them how to respect each other.

Children who are chronically bullied are at high risk for social and psychological problems. My area in general, has very good anti-bullying programs. Unfortunately, I still read stories and hear from parents around the country and globe, that their area is in need.

You can do something about it. Talk to your school about an anti bullying campaign or activities. Talk to your school PTA because they can be valuable allies in corresponding with school and enacting those activities. Educate on what students can do when they see someone being bullied. Have kids make posters or have an anti-bullying day. If there's a school fair, see about setting up and anti-bully activity booth of some kind.

Kids have to be taught that it's not right to hurt others for entertainment. People's differences should be respected and not pointed out for laughter. So lets look at the new school year with determination. If your child comes to you about being bullied, take it seriously and talk to the school. Get involved to stop bullying.

Kids told they are bad, will eventually believe it

It never ceases to amaze me, the horror stories I get from parents who approach me for input and advice on their situations. It also never ceases to amaze me, the level of warped ideas an entire community or group can get when it comes to children and their upbringing.

I recently had a parent come to me and tell me about her son's problems in school. He's acting out and refusing to comply with instructions in class. On it's own, that brings about judgments of and assumptions of brathood, but get this.

First, the school and teacher herself are disregarding the 9 year olds medical diagnosis of autism or any other disorder. They dismiss it as him "just" being difficult.

Second, the teacher has literally stated to parent and child alike that she's "sick of wasting her time" on this child.

Third, the child has been labelled by the school staff as a "menace to society" since either during or just after Kindergarten!

People, please hear me on this, when you constantly deliver a message to a child of what a failure or waste of time they are, sooner or later they are going to BELIEVE YOU!

This child has been ABUSED by the very people who are supposed to be educating and working with him. Not the parent, but a whole school! Abuse in schools must stop!

Current report from the boy's mother states that this child hates himself. Let's note those two words again... HATES HIMSELF. Now why in the world does a 9 year old child hate himself? Well, refer to the above because I just gave three really solid reasons! Because of the message this boy now believes, he needs therapy, he needs lots of therapy. He needs all that he has been taught about himself undone and retaught. THAT should be at the expense of the school district.

And if they are facing layoffs, teachers and staff who humiliate grade school children and destroy their self esteem should be the first jobs on the chopping block. It's child abuse!

I'm sorry, but these stories just infuriate me. Some get into media, like a little girl a few states away whose teacher wrote the word LOSER on all her homework assignments. He needs to be fired, I hope he was. That guy is a direct threat to the children in his class.

Our schools need to get with the times. These, our special needs kids, are increasing in number and science and current counts prove that it's going to keep doing that. They can either adjust for this change in students, or be overwhelmed and see a marked increase in homeschooling and lawsuits. It's your choice, educators of America, which way will you choose?

Back to school means new routines

So a new school year begins and we find ourselves getting up early in the morning and scrambling to get all things ready. Or do we? Well, I get up fine in the morning, Denver on the other hand, not so well. Even though I started getting up earlier and waking him up, the routine isn’t fully instilled yet. So, it will take some more work. Our first item of business in the morning is to get dressed. I meet with some resistance here but I set a timer to challenge him. It’s worked once so far, but we’re only two days in right?

Next we need to get our breakfast. Denver get’s to pick what he wants for breakfast so long as he gets moving in the morning and doesn’t create a crunch for time. We have plenty of Cheerios and that’s the fall back. So if he wants something else, he gets up and gets moving.

The only major challenge we’ve had with getting the new school year started, I could have avoided if I thought about it. Shoes. Denver has been wearing sandals for most of the summer. That became his routine, much like not wearing a coat or jacket. So when I brought out his shoes, we had a near meltdown. Oops. I slowly explained between protests that we weren’t wearing sandals to school and it’s time for us to wear our shoes. That means no more sandals for me either, until after school. Offering him the chance to wear his sandals after school seemed to help the situation and we were rolling once again.

New classes and new teachers are always a possibility for angst with autistic students. Denver get’s full props. He met his new teacher with a smile and friendly talk. He tackled his first day with flying colors. But this was just the beginning and I felt pretty nervous. Is it just the parents that get really nervous about these things? Maybe I worry too much.

When the time came to pick my lil man up from school. I waited outside the class room for the bell to ring. When he came out, the report was of a good day. I asked him what he thought of his first day. He used the word awesome with major exclamation. So we are off to a fine start for the school year. He likes his class and he’s with kids he knows.

Denver has been through a lot of heavy duty changes for an autistic child, but at least this didn’t have to change. With the school year off to such a great start, I find myself looking forward to the rest. I hope it’s just as good for the rest of you.