Our holidays 2010

So, how was your holiday? Did you remember or have a way for your spectrum child to take a break or de-stress? Did you have to use any of your safeguards? Well, our holiday season has been quite an adventure.

We took a journey in an 18 hour drive to Louisiana. This made for bored 8 year old in the back seat for a very long time. The drive down there from Wisconsin was done all in one shot. Yes we stopped for breaks and gas (ha ha). To go on this trip and when I have done others, an activity center is available for my son. It involves a small bin of his favorite toys, his DS game console, coloring books, crayons, and anything else that may help distract him. Distractions did not work so well on the trip to LA. So, needless to say, it was a hard trip. But let me tell you just a little more.

We left in the middle of heavy snow and ten minutes into our journey we were in a ditch. We needed a tow truck to winch us out and that certainly made for an interesting start and an agitated child who went into anxiety land. When I travel as a passenger I have to take dramamine. It's part of my sensory issues. Well, I forgot and got nice and nauseated on the trip in the first hour after being back on the road. But I took my med and felt better in another hour. After that, except for sore legs and buttocks from driving, and a whining child, things went fine. The weather cleared and all went smoothly. We got in to our destination around 9 pm and crashed thankfully on an air mattress.

Our stay was great. My son never really needed any retreat and enjoyed playing with a boy close to his age. He also spent some quality time with dogs. My son is afraid of dogs but he got to meet dogs that were genuinely nice and did him a great deal of good. This includes a total of five dogs in two different homes. One of them was one of the sweetest German Shepherds you could hope to meet. My son got to play in a huge back yard, jump on a trampoline, and just have an all out good time. We also tried new foods, like a four meat gumbo (chicken, shrimp, crawfish, and sausage). Our holiday meal was a feast of great proportions and of excellent selections. I mustn't forget to mention that we also took a trip to the zoo in Monroe. Most enjoyable.

Christmas morning was exciting and my son was beside himself with his gifts. New games for his DS that actually worked on keeping him distracted on the drive home. He had a couple of fits, but no where near where my own anxieties dwelled.

We broke up the drive home into two days and even that still had us exhausted. It was easier on kiddo though, and us too. His DS kept him distracted along with an IPOD that my girlfriend put some apps on for him. Mostly the DS though.

I'm not saying my son's behavior was perfect though. He was way out of routine and that caused some erratic behaviors and a tough bedtime and one tough morning. But, like it said, it was better than I thought. I hope that all your holidays turned out wonderful. Best of luck as we head into a new year!

Understanding Autism for Dummies in depth

So what does this book really have to offer? In my last blog article I told you about one in particular section. Today I am going to tell you just what this book has to offer you and why I think it will help a lot of families.

First of all, the "For Dummies" franchise has a reputation for making information simple enough for the "layman" who doesn't know jack about the subject at hand. This book carries that reputation nicely. I have to admit, I will likely be quoting this book often as a resource in the future. This book is written by Stephen M. Shore and Linda G. Rastelli (and EdD and MA respectively).

In the beginning of the book is a handy cheat sheet with exceptional information listed as: Inquiring about Interventions, Important Acronyms, What to have on an emergency ID card, Helpful autism websites, Getting the most out of your child's education, Preparing for emergencies, Communicating with autistic people. And the ID card has a front AND back with great info.

The foreword is written by Temple Grandin, nuff said on the department. It compliments the book nicely and you just have to read to see for yourself on that one.

The rest of the book is neatly arranged and meant to be read in the parts you need. You don't have to read the book cover to cover thanks to the indexing and chapter positions. Each part of this book and it's chapters are clearly labeled. Here they are:

Part One: Understanding Autism: This section is all about classifications, treatments in general, ideas on where autism comes from, getting a diagnosis, and where Asperger's fits on the spectrum.

Part Two: Addressing physical needs: Medications and treatments are talked about here. Biochemistry and nutrition are also touched on in this section.

Part Three: Enhancing learning and social skills: I'm going to list the chapters as they appear, should tell you all you need to know about this section:
-Choosing an appropriate behavioral, developmental or educational intervention.
-Dealing with learning and sensory differences.
-Finding a learning environment that fits your child's needs.
-Legally speaking; Making the most of your child's education.
-Fostering healthy relationships.

Part Four: Living with autism as an adult: This is about life after high school and touches on special needs planning and getting into healthy relationships. It even talks about romantic relations and adult friendships.

Part Five: The part of tens: This section is where the quotes are in dealing with things that people say and do in public regarding you or your child. It includes the first ten things you should do after a diagnosis.

The appendix lists a long line of places to go for more help. The whole book goes farther and deeper into the information that I show here. It's a book with more than 300 pages and all of them are very useful.

Nothing is perfect for everyone, but if you wanted to get a guide on autism, this is the place to start. I got my book for less than fifteen bucks (including shipping) on Amazon. It's cover price is still affordable at 19.99. You may be able to find it at used book stores too for even less. Check around and get this book. I can't advise it enough. Every autism library should have it.

Understanding Autism for Dummies

How do you tell people your child has autism? How do you tell people you have autism?

This is one of the questions that was presented when I asked friends on Facebook what readers want to know about autism. It's a very good question. In looking at that question there is a reality we need to take into consideration.

Most strangers just don't care. They only care about what irritates them as they move around in public.

I know that seems harsh, but it's true. While we want the general public to understand our child, it really only matters for those who will be working with him or her directly. It counts for those who are supposed to care about our children, be teaching them or spending copious amounts of time with them. That is where to start in telling anyone that our kids have autism.

Now, in continuing to answer this question I want to tell you about a book I recently purchased on Amazon for about 15 bucks (including shipping) called, Understanding Autism for Dummies. You may already know of the "for dummies" series. It's excellent in "dumbing down" technical information to make it easy for just about anyone to understand. Let me tell you about this book by Stephen M. Shore EdD and Linda G Rastelli MA with foreward by Temple Grandin... it's a GOOD book!

I will go more into the makings of this book that you should go buy RIGHT NOW in another posting, but for now I want to go over chapter 17. It's about Ten ways to respond to questions or comments that you will deal with and may recognize. Please note, I am going to quote the book somewhat directly with proper credit intended to the authors. I am going to do this in the format of the comment, followed by why it's inappropriate (it's problem) and responses the book suggests. You should get the book for the full message.

Comment: What's his special talent?
Problem: Reduces your child or you to the status of a circus performer or social oddity (though the question is innocent enough and not usually intended to be rude).
Responses: "Some autistic children have special talents and some don't, just like the rest of us. What's your special talent?"
"I don't know, but I can tie my tongue into a knot."
"We don't think of him that way. We think everything he does shows talent, considering how hard he has to work to overcome his disability."

Comment: Why can't you control your kid?
Problem: Assumes you are just a bad parent.
You can tell this person that your child has autism if you like. I have found, in some communities, people are getting more understanding. They lose the glare, nod and walk away. But some can't be helped. The book doesn't really give responses in this, rather advice. Don't let these people get to you. Yeah, easier said than done, but you have to remind yourself that this person simply doesn't KNOW. Some things I have said when someone gets invasive on the point:

"Sorry, but standing there staring is rude too."
"Thanks for your input, have a nice day."

Then I ignore them.

Comment: Asperger snausberger, he looks fine, he just needs a better attitude.
Problem: Dismissal of his condition and what I like to call "assumption of brathood".
This falls in with the above and the book makes a suggestion here. You can carry pamphlets on autism education or a card that simply has the name of a website such as Autismsociety.org. The follows the same train of thought I have after that. You can only educate the open minded. Pass them by after that. You have your hands full enough without them.

Comment: Who did he inherit it from?
Problem: Implies that someone is to blame.
You tell them that genetic research has found that there are hereditary factors but they are very hard to be sure of. Or, you can go for the humorous angle and claim responsibility with pride. If your spouse is with you, the two of you can both claim responsibility and maybe even mock argue the situation a little. The truth is, that while this is ignorant (thought innocent), it really has little to do with how things have to be handled or how you and your child have to live with it.

Comment: Why should your child get special treatment?
Problem: Dismissive.
The book explains that you and your child have rights to proper support where needed (such as in school) and it's just as simple as that. Most people in public don't seem to hit on this one, but that doesn't mean you won't come across this very rude person. Refer them to the Americans with Disabilities Act and the idea of general human decency. Then walk away.

Comment: Are you kidnapping that child?
Problem: Accusatory and dangerous to you in public.
You have to handle this one gently. The more you get defensive and offended the more others will judge you in a negative light. Use the power of education here and explain the situation as best you can. Most people who are truly concerned and security personnel will understand and back off. Sometimes others who are nearby who also know autism will chime in and help you. This has happened to me personally.

Comment: (sort of) The "Bad Parent" glare.
Problem: Accusatory without words and very uncomfortable.
Remember what I said above. You can also say, "Excuse me? Can I help you?" and draw attention to their own rudeness. Be sickening sweet about it too. Be nice. It shows all others around the difference in public behaviors.

Comment: Is she/he still in their own world?
Problem: Assumes that all autistics are in the same box.
The fact is that we are so aware of our world around us that it can be painful. As the book says, imagine having to go through your day able to hear (loudly) the ticking of every clock in the house, or being driven to distraction by the crinkling of a plastic bag someone is shoving under the sink (from even the farthest room in the house). Imagine not being able to filter out the input your brain is trying to take in. There are a couple of responses suggested for this. Here is the more bold approach (even the book says this about it so use with care)
(Staring blankly say:) "Who else's world would she be in? I mean, really. It's not like they beam us all off the planet at age 22 is it? If they did, I missed my flight, darn."
The second is a longer winded approach but suggests that you basically explain that autistic people tune out as a defense mechanism against a world that is too bright, too loud and full of innuendo that's hard to understand. Inform that such a question is a good way to annoy an autistic person. They understand more than most people realize.

Comment: They grow out of it, don't they?
Problem: Assumes that it's just a phase and is dismissive.
This person needs to know that autism is with us for the rest of our lives. I have personally told people that my son will grow out of phases that they see and be able to live life to break assumptions that he will always be the way they see him now. The fact is, autistic people grow and go through phases like anyone else. They start as babies, children and then make it to adulthood.

Comment: But she doesn't look autistic.
Problem: Truly ignorant and dismissive. Assumes that there is a special "look" to autism like a missing arm or leg.
The defending information is that autistic people look just like everyone else. Autism is a biological disorder in the brain. It may affect some aspects of how the body reacts, but does not change physical features. Also, for those who mention Rain man or some such thing, it should be mentioned that not everyone has that effect. If they do, they still "look" like everyone else.

So there are some tips from the book: Understanding Autism for Dummies and I strongly suggest giving it a read! There are lots of ways to respond to the ignorance of others, you can be quaint and educative or slightly sarcastic and have fun. The point is not to let them get you down and keep you from living a good life.

What does stimming feel like?

I found this to be a very good question. While a couple of readers took time to answer it on my wall at Facebook, I wanted to make sure that I answered it here too.

Stimming is generally a repetitive behavior that persons with autism may engage in. It may include rocking, hand flapping or gesturing in the air. It could be foot tapping, leg bouncing, or even something vocal. It could be clapping too.

Why the stimming? Sometimes, and I think most of the time, it's a calming way of directing energy or dealing with stress. It can also be totally unconscious in it's application and therefore much like a "tic". The difference being, once you notice you are doing it, you can stop it. Tics are harder to do that with. I have a tic in my neck that makes my head jerk to one side at times. I can't stop it if I want to. It just happens.

Stimming can have almost meditative effect on many of us. It allows us to either escape or cope with a given situation. But how does it feel? I think it feels like anything feels. Take something that feels good to you and calms you and consider that.

Lets consider a stimming of rubbing ones hands together. Try it. Rubbing your hands together makes them feel warm. It may not calm you, but to someone with a sensory disorder it could feel as good as a Sunday back rub. It could bring calm to their mind and be relaxing to them. It's hard to say how anything feels with clarity because everyone "feels" differently.

It's best to remember that it's usually a positive thing and helpful to someone with autism in dealing with the world around them. It's usually rooted in the sensory of the person as well.

Are there negative aspects to stimming? Yes, if the stimming is disruptive, considered gross or unhealthy, or could put someone in danger, it would be a stim to try and work out of. Stimming is very hard to correct and can be a powerful habit. Can these habits change? Yes, in our children who are growing up with autism, their stims can change as they age.

Unless it's proving to be dangerous or hazardous to health, stimming should not be punished or heavily discouraged. Punishing the behavior will have very negative results and be extremely frustrating for all involved. Can you imagine punishing someone for rubbing their hands together? Who are they hurting? And it's a powerful impulse. You may as well punish them for breathing.

So I hope this brings some stim understanding to you. Feel free to post examples of stimming as you know it in comments.

"I hate your autism."

First,note the quotation marks. I don't actually hate anyone's autism, but you've heard this quote before perhaps. I know I have. It's a quote that reeks of intolerance and lack of education. It can also come from frustration and lack of understanding.

Those of you at my facebook page may remember a question I posted some time back. I asked what readers want to know about autism. One parent posted that he wanted to know how to get rid of autism as soon as possible. He hates his child's autism. Now, I'm trying to address his quote and this reaction in other was rather than be negative and I hope the rest of you take it the same. I believe this man and many parents like him are frustrated and at wits end. They are having a hard time understanding their child and how autism takes affect.

From this point of view, I want to remind you all that there is no cure for autism. Let me repeat that; there is no cure for autism. One more time, there is no cure for autism. At least, not yet.

That being said, the first thing you must understand is that autism is a biological condition, not a psychological one. It has psychological co-effects, not it is not psychological at it's source. Autism is caused by various connections in the brain that are not communicating properly if at all. That's how everything in your body works, you know. Your brain tells your heart to beat, your lungs to take in oxygen and controls how your senses take in information. That's the key here. How your senses take in information shapes how you interact with the world around you.

Some of this can be overcome with years of practice and support. However, autism will be with a person for the rest of their life. There will always be difficulties. The sooner you accept that as a parent, the sooner you can be your child's best coach in how to survive and live with autism. Without that support, especially without your support, your child's future is bound to be uncertain and random.

Another aspect to consider. When someone says to me, "I hate your autism" (and it's happened), it hurts. It hurts especially if this is someone I trusted and let close to me. What a terrible and unfair thing to say. It's even worse if you are a child and a parent says that to you. It's confusing enough to grow up with autism, trying to figure out how to work with the world when your brain won't process things normally. Add emotional turmoil with a parents disapproval and it's much worse. It's not the child's fault they have autism. They can't wad it up and toss it in the trash for you. As it is, children with autism have a tendency to take things very personally and literally. You may as well come right out and say you hate them personally. They are likely to take it that way.

It's important to learn all you can about autism and how to teach your child how to live with it. You have to know that this process will last their entire childhood to the rest of their natural life. Be part of their lives. Autism is not the end.

Passing Thanks (dedicated to Donna Carmen)

She was one never afraid to speak her mind. That was my Grandma Carmen. If she had any opinion at all, whether you asked for it or not, she would give it to you. It may not be what you wanted to hear either, but she was very honest. Thing is, I don’t ever remember her being wrong. She passed away in the hospital just yesterday and tomorrow is Thanksgiving. Yes, that creates an interesting array of thoughts. As I sit here and remember her, I realize that I’m thankful for having her in my life. She was very influential to me and one of the most supportive people in my family.

She took me in when I was stranded in the streets of Los Angeles at 17 years old. I was a troubled and random kid who still didn’t know that he was autistic or what that meant. Her strong honesty and direct communication guided me towards finding a job and doing for myself. I didn’t always like it, but it worked.

When I learned about having autism, she was one of the first family members to take immediate interest. She often had articles and people to tell me about when spoke after that. Like everyone, she knew there was something going on with me, but no one knew what it was.

I remember Fourth of July get togethers, family reunions, home shopping network and football being a big deal around her house. I remember the giant satellite dish and Grandpa’s giant ham radio tower antenna. I remember more Avon “shaped” cologne bottles than I ever saw in my life.

I remember anytime I was hungry while staying in her home she would say, “the food’s there to be eaten” and “If you leave hungry it’s your own fault”.

So I have a lot of experiences to be thankful for and I learned a lot that helped me in life. I’m very thankful and that is what I am carrying into my Thanksgiving this year.

Autism and holiday gatherings

I know of many families who don't go to holiday gatherings anymore because of their child's reactions or unsupportive family reactions that are involved. For some of these situations it's understandable. But if you have a high functioning child you may be depriving them of important social practice. That being said, it's that time of the year to consider all the things we need to do for our kids to survive the social dramas of the holidays.

Holiday gatherings fill a place with extra sounds and smells that can trigger the more sensitive of our kids. There have been times when my son just wanted everyone to go home because he couldn't take all the mixed voices anymore. The extra mix of smells from varieties of food cooking can be a trigger too. While the typical person finds all the odors a delight, too many can overload an autistic.

Can your child handled a holiday gathering? How well does he or she handle crowds? How big of a crowd? How loud? Compare your child's sensitivities that you already know about to what you know of your family's gatherings (if you haven't tried already) and you can gauge their reactions.

How do you handle the hard spots? How do you handled the possibility of meltdowns from sensory overload? As a matter of practice, remember to plan an escape route to a designated "quiet spot" where your child can feel comfortable and relax for a bit. A place to hide from the sensory input. If you are going to another persons home, you should discuss this option with them and see if they can work with you. If you have unsupportive family, this may be difficult. Understanding that, your child's welfare is more important than any holiday gathering. You should take no shame in having to leave early or just not going.

If you don't go, be sure to share some holiday experience with your child at home. Cook things that have some of those smells and get them involved in your own home festivities.

Another way to help with possible problems is to have things there that are positive distractions. Things that your child loves in the sensory realm. For example, maybe they just love the crinkling of wrapping paper in their hands? Let them play with it. It's better than a meltdown any day and comforts them. For that matter, some are best left with their special diet and what they prefer for the day rather than forcing them to what you know they may not eat. This will keep the peace for your get together and everyone will be happier for it. Try not to forsake any routines so you can help them say as balanced as possible.

What's most important is that you know your child and know what affects them and how. You are the one who can help them the best. Be their holiday advocate and you can find ways to get through the holidays easier.

With that, I wish all of you a very happy holiday with many happy tidings involved.

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