Asperger's and Child frustration

I was going to make this blog about sensory issues and getting school supplies, but something happened. It's going to have to wait for next time.

My son is showing me that he can be sneaky, but that's not the issue either. It did lead to what happened.

Last night, my son told me he felt tired and wanted to go to bed early. That's not an unreasonable request. If he's not feeling well, he should get some rest. So I said "okay" and we did all the night time things you do before you go to bed. Then I tucked him in and that was that. Well, that's what I thought anyway.

An hour or so later, my son called frantically from his bedroom and I went to see what the issue was. As it turns out, he had slipped his Nintendo DS into bed with him and now it was broken. He gets limited time with video games to keep him from sinking into them and never coming out. This isn't the first time he's pulled the 'sneak it into bed' for extra play trick either. And who didn't sneak a comic book and flashlight into bed at some point in their childhood?

He broke the DS right at the hinge because he became angry with it. It ran out of power and turned off in the middle of his game. He got angry and in that moment of child frustration he must have wrenched it in his hands to break it.

The consequences for this are clear. He gets to tell his mother what he did (this was a Christmas gift from her) and he will have to use all his allowance to replace it. This will take a long time. The Ipod and DS were already banned from being in his bed from the last sneak episode. Now they are banned from his room altogether for supervision's sake.

Generally, the rule is this: if he breaks it in anger it doesn't get replaced. That's a fine rule for most toys. But now I find myself faced with the expensive ones that have a bit of investment. I also find myself worried for him. I worry about him learning to control the spontaneous rage that we can be afflicted with at a moment of frustration. I went through the same thing at his age. It has taken me into my adult life to learn how to control it. I don't want that for him.

This impulse behavior is not uncommon in our spectrum children. The only way to deal with it is with direct consequences and to point it out specifically to our kids. We have to teach them about that specific impulse and what it means. That is the only way, by making them specifically aware of it, that they may eventually learn to control or stop it.

Are you having a similar issue with your spectrum child? Feel free to post in comments. Your email is private and you will not be spammed.

Autism: Suggested reading

I recently picked up my first copy of The Autism File magazine. What I found in its pages were reader friendly and informative articles. These articles come at nearly all fronts of what you want to know about autism. In the edition I picked up were articles about summer activities, picky eaters, recipes, breakthroughs on interventions and quite a bit more. A favorite of mine for this issue was the article on being prepared for bullying. Since a new school year is up and coming, it's an important issue. The article I picked up is the Summer Issue number 40. I strongly suggest you pick it up and subscribe to this magazine. It's amazing.

The magazine also has some suggested reading in it and I will be checking this book out soon myself. It's called, 1001 Great ideas for Teaching and Raising children with autism or aspergers. That just sounds like a great book right off the top.

Another one suggested in the magazine that looks good is called, 60 Social situations and discussion starters. It's a book for teens on the spectrum to help in learning about freindships, feelings, conflicts, and general aspects of relationships. I think I will be checking that one out too, even though my son is only 9 right now. Hey, time flies right?

I have to suggest Understanding Autism for Dummies again. If you haven't checked out this book, do it soon. It's an excellent resource for Asperger's from diagnosis to helping learn relationships. It has great suggestions for how to handly various situation in public and as your child grows. It even has suggestions for moving into adulthood.

I think it's important to have a good set of home resources for autism. Yes, the internet has lots of info, but it's nice to be able to pick up a book and flip open the pages to the info you need.

You can google research autism literature by typing in autism book or aspergers respectively. Amazon has about every book you could hope for and you might get it for less. There's noting wrong with a used book unless it was hopelessly abused (then it shouldn't have been sold in the first place).

With E-books on the rise, you should also check out sources for those. I've been told you can get just about any book for your Nook or E reader out there. If you get E-books already, check your source for autism info.

Do you have a book or magazine for suggested reading? Post it in the comments so everyone can check it out!

Back to School for 2011

So far, I think I have been blessed in the schools that my son has attended. I have consistently found understanding faculty who are at least halfway knowledgeable on Asperger's and autism. I'm sure there will be points in getting to know my son, but we have always been able to deal with that.

This is an important time. For many of us, school starts sometime in the next month. It's time to be thinking about how to be active parents in our children's school lives. I have a few tips that you may find helpful.

1: Make sure IEP's are up to date and check with the school on it a new meeting is needed. Sometimes they don't need one or have a time scheduled based on the last time you had a meeting. Double check on it. Have information from the last IEP ready if you kept it from last year. If you didn't keep it, you should have. Make that a new habit. Keep a file folder for your child's education information.

2: Meet the new teacher and see the new classroom. Let the new teacher know that you are readily available for any questions or needs regarding your child. Exchange emails, most teachers have them now. If your child will be spending time with a special education teacher of any kind, meet him/her too.

3: Get needed school supplies. That's a no-brainer, but some of our students need special supplies. Those are better found sooner than later.

4: Being an active parent means that you are readily available for anything. It means that you are involved and open in communications with the school staff. It means you ask questions and want to know how you can help and where. You don't have to join the PTA or volunteer all over, just be involved where your child is concerned. Be ready to help with behavior issues or questions that help staff get to know your child.

5: Know how to communicate. Asking what you can do to help is way better than demands of the staff to "do their jobs". Demands have their place and are best used when all other approach has been exhausted. Don't start out the school year with demands or veiled legal threats. Be pleasant and polite instead. It will get you much further faster.

Things that staff need to know:

1: Triggers: What affects your child and how it affects them. Will a fire alarm incite hysterics? If so, they need to know this ahead of time. Do they have a problem with being touched? Let the faculty know. Let them know the risks involved too. If your child is high risk for self injury, for example, schools need to know. They especially need to know what causes those reactions. They can't cover everything, but knowledge is power.

2: Medications: They especially need to know if there has been a change to meds and what to watch out for. If there are any concerns with a new medication that could have any affect on the classroom, make sure you communicate it.

3: Quirks and stims: These can be some of the most eyebrow lifting moments in a classroom. What the heck is Joe doing and why? Quirks and stims are nearly limitless in what they can involve. They can be surprising and sometimes disturbing. Understanding them is a great step toward helping a child in a classroom environment. Also, forewarned is truly forearmed.

Remember, you don't want them to re-create the education system. You just want to help them work with your child. You just want to be a part of his or her educational team.

If you are at a school that won't do this, that is a different story.

How to get your important message across, or not

In autism, just like with many things, there are differing sides, issues and beliefs. For each of these there are people who feel very strongly. This is understandable, however, some feel so strong about their thoughts that they fall into a state of fanaticism.

Fanatics are hard to deal with, especially if they don't quite have their facts straight. I'm not aiming at any particular group here, (that would be particularly dangerous) but I do want to point out a few ways you won't get your point across.

Extreme measures have their place. Take a peaceful protest march of thousands to the White House or a State Capitol somewhere. That's extreme, but it has worked to make political and human rights points in history. The key to an extreme measure working is choice. People choose to get involved and the do so because they believe in what the protest stands for.

Now I'm going to say something harsh but it's also very important if you want to get your point across: Misuse of an extreme measure will only make you look like a lunatic. To avoid that, you have to use your media with care and present your message in a politically correct fashion. I know, I'm not always that politically correct, but bear with me. The most of what I miss is usually he/she reference. I stick with just one and it's meant to be in respect that there are two or what not. I have been attacked for that before.

So, here are some important points to consider about delivering your message:

1) FACTS: Have you researched your information and are you using verifiable facts? For example, if you go around calling people with Asperger's liars for saying they have autism, you would be hurting your case. Asperger's is recognized by every medical board in the world as an "Autism Spectrum Disorder". Recently, they have considered making its diagnosis separate for identification issues and there is an ongoing argument, still: that doesn't change what it's been accepted as for years, a form of autism. Conspiracy theories of many kinds are famous for getting blown out of proportion to a point of inciting panic. This doesn't help the point that needs to be made, or the message. So, make sure you have your facts straight before you go on the warpath.

2) DELIVERY: How are you getting your message out? Do you write blog articles like me? Do you have a website? These can be very good ways to deliver your message. You will have to write for a while to start getting attention, but keep going and time will bring readers to you. But what if you want to skip that time needed? Maybe you decide to gather friends on Facebook and then launch emails at hundreds of them at a time with your message? Watch out. That could get you in trouble for spamming. You may have an important point, but if try to flood people with it too much, too fast, you will only annoy and turn them off to your message. And you can't please everyone, no matter what you do. I've been called a ranter plenty of times. You can't reach everyone either. Some people are dead set in what they believe, right or wrong. You have to let them go and get on with what's important, those who are listening and your message.

3) IS IT FRIENDLY? A true mark of a bad fanatic is someone who insults everyone that has a different point of view. I'm talking about someone who calls people racial slurs, drops obscene language makes horrible references against opposing opinions, just because their opposing opinions. This person will ignore all facts presented and not take any time to look at perspectives or respect others. If you don't believe they way they do, you're scum. Don't be one of these. You will have a select and small group of listeners, sure but your message won't get far. You will turn off people left and right. Even people who are famous for such attitudes are limited in number. Even they don't get away with calling people much more than "stupid". As soon as I get slighted like that for my opinion, that person loses all credibility with me. I've had some strong opinions of people too in my day. Thankfully, they've either been a learning experience and never been obscene with a torrent of swearing and worse.

Honestly, if you can steer around those three obstacles, you can gather quite a following to your points and probably even get something serious accomplished. The internet can be an awesome tool for this, or it can lead to your destruction.

Fourth of July 2011

Our new home area already had its annual fireworks display and it was fun to go and see. We sat on top of a levee with hundreds of other people and the toughest part was waiting for things to get started.

My son doesn't like to wait for long and the first thing he wanted to do was run around with other kids. Unfortunately, being on top of the steep levee made that something we didn't want to let him run off on. We also didn't want him running off into a crowd of strangers. A boy did come over and talk to him, as well as donate a hamburger wrapper to us (gee thanks!).

We had two nephews with us too. Before the fireworks got started we had a bat show. I think I counted three different kinds of bats swooping for insects over our heads.

The Fourth, with all it's explosions and bright strobing lights, can be daunting for our kids on the spectrum. There are many who cannot tolerate the fireworks festivities. There are also those who would endanger themselves by getting too close, enthralled by the experience. My son enjoys fireworks from a distance and has his limits. He doesn't like the really loud ones and holds his hands over his ears.

I'm just glad he doesn't want to run away outright. There are things that have made him do that. Then I had to actually catch him. My presence or voice were not enough to calm him. Like the first time he looked up from the base of a ferris wheel.

Well, I hope all your festivities are safe and you have a good back up plan for sensory overloads for your kids. Have a great holiday.

Yes we DO need diversity!

Websters Definition of Diversity: 1. The state or fact of being diverse. Difference. Unlikeness. 2. Variety. Multiformity. 3. A point of difference.

Social diversity is the existence of multiple cultures and types of people in any given area.

Throughout history people of many beliefs, lifestyles, creeds, ethnic backgrounds, religions, disability and more have staked their claim to human rights the same as any man. This has been backed and enforced by the Constitution of the United States of America, similar constitutions of other countries and laws around the world.

"We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness." Constitution of The United States of America (Thomas Jefferson).

See that quote? I has come to mean so much more than the paragraph you see in the Constitution. I means social acceptance without being shunned or judged. It means not being discriminated against for status of race, color, religion, sex, HANDICAP, familial status, or national origin. Yes, I capitalized that word on purpose.

I means having equal opportunities at good housing, employment, education, and medical care (insurance too).

It's why hate crimes are considered particularly heinous in nature.

Sadly, in the autism community the term is being horribly misused and misunderstood. I have been told and shown that, supposedly, you cannot be accepting of the search for an autism "cure" in any fashion and be for diversity at the same time. This is 100% in error. I can believe what ever I want to and telling me that I "can't" is wrong. The Constitution and Law say it's wrong. Let's take a look at why the two subjects should have just about nothing to do with each other.

Concern's against "diversity":

1: I found a comment at a blog I will not publicize that stated, "Neurodiversity is just a way for lazy people to get on disability." The very wording of such a statement is bigoted against the disabled and highly discriminatory. It proves that diversity and acceptance really are important. If one rude person on the internet is willing to publish such a horrible thought, how many more ignorant people are out there in housing, workforce, or the medical field who will discriminate because an autistic person happens to be on disability as well? It's supposed to be wrong to hold an entire community to task for the lies of an individual. If someone is frauding the system, that's on them as a person. It's not on the whole community of race, creed, sex, etc.

2: A cure is a better idea because then no one would need diversity: Again, faulty logic. This ignores the very fact that there is no cure and there are varied forms of autism. It ignores the fact that there are people out there right now, who deserve acceptance and the same rights as the rest of us, whether you look for a cure or not. It's like some of the activists for a "cure" expect people of the autism community to just suck it up and get over it. It's like they expect autistic people to put their lives on hold (medical costs, education and all) and wait for the golden miracle cure. Because with that cure, all problems would be solved.

If you want to find a "cure", go ahead, that is your right. Stop bashing people who just want to be accepted like the Constitution says they should.

And now... for the other side, just to be fair. Concerns against a "cure".

1: That it will be forced on autistic people to change them: I've said it before and I will say it again: That would be illegal. Also, again, there is no cure. That makes fearing a "cure" at this time akin to fearing the boogeyman.

2: That babies will be aborted: Fact, babies are already being aborted. This cannot and will not have that much of a change on those numbers. How do I know this? Take other medical conditions into account. Down Syndrome; I personally know just as many parents who knew they were having a child with Down Syndrome and didn't abort as any who said they did. For any of these situations there are people of all kinds and beliefs. This makes the abortion concern another empty fear. If you want to be against abortion, then go out and do so. Abortion is real, a "cure" is not. Work with something that is real. You'll get a lot more out of it.

3: People will be told not to have babies or start families if they have autism. That is discriminatory and should be reported if any social worker says this to you. No one has the right to tell you if you can have kids. Naturally, there are situations where a person is unfit to have children in the first place. That's different. But, if you are fit, and there's every chance you are, report any worker who says that to you. Report any nurse too. It's discrimination, simple as that.

For people who actually believe that load of tripe about avoiding having children if you autism, I have this: You need to do some research and get an education. If you want to save the world from medical conditions or "types" of people, there are plenty of deadly lifestyles and diseases you can take up arms against. Maybe you could help against crime or drug addiction? You know, things that are actually KILLING people. How about standing against spousal and child abuse? Just a thought.

Diversity is needed, it stands with historical evidence into the dark ages. It has nothing to do with seeking a cure. Mixing them just creates uneducated fear.

So, one more time: A "cure" has nothing to do with the fact that all people deserve acceptance and understanding. ABSOLUTELY NOTHING.

Autism and Fear of Storms

I received a message from Ashley who said: "I'm wondering if you've had the experience of maybe you child becoming overly obsessive about bad weather conditions? With the tornado warnings and every thing recently my son has been really worried about it... thanks for any help you could lend."

The weather is a larger than life and ominous force to a child. If your child is on the spectrum and is sensitive to routine (almost all of them are) then the weather serves as even more of an anxiety. It's hard to feel safe and secure with something a million times your size that you see no routine in. If you think seasonal changes are tough, try having your child obsess over daily weather conditions.

Now add in seasonal conditions like tornadoes and floods. We see their destruction on television all the time. Our kids see that and say "oh no!". They associate the condition globally. What happens in one place, happens everywhere. My son is afraid of floods. For a while, rain water that could fill just the gutter, was enough to incite panic. It still takes some reassurance today when rain starts coming down hard. Now, he studies tornadoes, volcanoes, and other giant weather factors as a source of fascination. It helps that school has supported educational issues on his fears as well as myself.

First, we have to understand that this is a real fear and we shouldn't diminish it or punish it.

Second, we have to understand that resolving this will not happen overnight. It will take some time and repeated application of education and support.

Third, use education. Find age appropriate books about weather that he can look at for himself (yes, or herself). Teach him about weather as it applies to where you live. There are even books on fearing weather as children. I don't have the titles but your local library can help you.

Teach him what to do in bad weather and give him his own weather kit with blanket, flashlight, and radio. Reinforce that he has a family that loves him and will protect him. Show him that safety from weather is done as a family at home or a team effort at school.

If he's old enough, show him how to check the weather. If, not, check it on your internet and show him. Education is the answer. Love, support and education will help your child understand that the weather is something we have to live with, but we understand it and know what to do for safety in bad weather.

Remember, our autistic kids work best with direct simple facts. It also helps to make learning about weather an accomplishment of some kind to boost confidence. Use lots of praise for learning, even if it doesn't seem to affect your child because of their autism.