Thursday, September 30, 2010

PROMOTION: 30 SPD Stories in 30 Days Fundraiser

I just wanted to draw your attention to a series of posts which is starting on Hartley's Life with 3 Boys this month.

http://www.hartleysboys.com/

Hartley’s Life With 3 Boys is holding a one of a kind event showcasing the stories of 30 Families parenting a child with SPD in 30 days and is designed to not only help spread awareness of Sensory Processing Disorder, but to raise money for the SPD Foundation’s 30th Anniversary.

With a new ‘sensational story’ posted every day through the month of October, including a never-before-published story from Dr. Lucy Jane Miller that will move you to tears, as well as the inspiring stories of other SPD advocates and authors such as Chynna Laird and Terri Mauro, and an emotional story told through the poetry of Jennie Linthorst, among the many other families just like me and you, these stories showcase what it is really like to raise a child with SPD and how increased support and funding is so desperately needed. This event will spotlight the struggles and successes every SPD family faces on their SPD journey; from ‘ah ha’ moments, to finding help through Occupational Therapy, these families are on the front lines of this disorder every day.

And helping them is easy.

Visit Hartley’s Life With 3 Boys blog and click on the “ChipIn” widget on the right navigation bar. It will take you to PayPal where you can make a donation in any amount you choose.

In an effort to encourage everyone to donate generously, prizes will be awarded to the person raising the most money each week and there will be a HUGE PRIZE PACKAGE for the person who raises the most money during the month. Also, if you raise $250 you will automatically win a prize! So rally your friends and family, and have them donate under your name – all you have to do is ask them to leave your family’s name and email address in the comments of their donation – and you are entered to win!

The prizes are fantastic! Here are some of the things you can win:

And MUCH MORE. To see a complete listing of prizes, view HLW3B’s prize page here.

Now is the time to join in on the fun and help spread AWARENESS of Sensory Processing Disorder far and wide and provide them hope for tomorrow.

Article: A Door to Advocacy and Leadership for Asperger's and a Special Kind of Fame

Just drawing your attention to an article of mine which has appeared on the SOS Research Blog;

A Door to Advocacy and Leadership for Asperger's and a Special Kind of Fame

Thanks to Danette M. Schott for providing me with this opportunity.

Tuesday, September 28, 2010

Article: Soothing and Self Stimming Behaviours by Karen Krejcha

I've been meaning to talk about this for a while but things have just gotten away from me.

Karen Krejcha, who blogs at Aspirations (http://www.aspierations.blogspot.com/) has written a fascinating couple of articles called;

Soothing and Self Stimming Behaviours in our Family
These articles are both incredibly well thought out and cover a whole range of stimming with plenty of real-life examples. They are well worth a read.

Monday, September 27, 2010

Book Review: Aspergers on the Job by Rudy Simone (Guest Post by Danette M. Schott)

Before we begin, I'll just point out that this is a guest post - in fact, it's my first ever guest post on this blog - so I haven't actually read this book myself - YET!

Please welcome Danette...


Danette M. Schott is founder of S-O-S Research and blogs at Help! S-O-S for Parents. She is the mother of two children adopted from Russia and personal need has required her to research a variety of special needs issues. The following book review and interview is reprinted with permission.



People with Asperger's (AS) and high functioning autism (HFA) are all around us, whether you are aware of this or not. She may be the person who appears to lack a sense of humor, is overly anxious, or seems emotionally detached. Or he may be the person who only talks about cars, appears to be very logical, or doesn't hold eye contact.

But people with AS and HFA also have strengths and gifts that Rudy Simone spells out in her first chapter in "Asperger's on the Job." She has written this go-to book for people with Asperger's or HFA and their employers, educators, and advocates so that everyone can learn to work effectively and productively together. In addition to reading Rudy's book, I had the pleasure of being able to interview her.

As an adult with AS, Rudy is able to provide her unique insight into the struggles those with Asperger's face in finding and keeping employment in "Asperger's on the Job." As Rudy explained:

“Some with AS do poorly at interviews, others do well because it is a ‘performance’. I always got the job, it was mostly the social stuff that came after that robbed my peace of mind and kept me from staying long or rising in the ranks. My first real job had been as a singer, but when that ended, and I had no degree, I ended up in jobs that required ‘people skills’ because jobs that don’t require degrees often do require people skills—waitress, hostess, cashier, receptionists, secretary, etc. This is why I urge people on the spectrum to get their qualifications.

The last job I had where I had a boss, entailed the same social, sensory, and cognitive problems I’ve always had at work. They misread me, asked me to do things in a way I wasn’t able to deal with, or changed the methods overnight with no warning or chance to assimilate the idea of change. It wasn’t until after these jobs ended, that I understood AS was the underlying reason for my difficulties with work. But since then, I have been self-employed by choice. I still have to deal with people—employees, publishers, editors, the public and so all the principles I talk about in my books come into play—managing my social and sensory issues is a daily duty."

I asked Rudy if she could reveal some of her successes on the job. She offered the following:

“By far, being an author is the best thing in the world for me. Interviewing people, writing about it, sharing what I’ve discovered with others in the hopes of improving people’s lives. Sheer bliss, but it’s not a high-paying career for most of us. Strangely enough though, I love performing...it enables me to connect with people in a way I simply cannot do in day to day life. As far as working for others, the last two jobs I had were the best: TAPS, (the stars of “Ghost Hunters”) had a magazine and I was head writer. I simply had to ask a lot of questions and write. Being a senior editor was also good—I was able to use my special interests, going through others’ work with a fine tooth comb and pointing out mistakes or room for improvement—heaven! But I also did well in other positions, such as screening applicants at a head hunting agency in NYC. Again, it was about getting to the heart of the matter— asking the right questions."

In her book, Rudy also includes the experiences of over 50 people with Asperger's located all over the world. She presents various issues in each chapter and then provides insight into what the employee can do and what the employer can do to work through the presented issue. Comments from people interviewed for the book are generously scattered throughout the pages and help provide a personal component to each problem. Finally, Rudy ends each chapter asking thoughtful questions for the reader to consider.

"Asperger's on the Job" contains useful information for young teens with AS or HFA who may be preparing to apply for their first part time job. But I also see this book being useful for parents of children with AS or HFA. By reading the book and analyzing the potential employment pitfalls, parents can determine the areas that will be key to their child's future with regards to employment. The areas are nothing new, but when they are discussed with perspective to employment their importance seems to be elevated. Here are some of the areas of difficulty:

  • Problems making small talk;
  • Inability to read nonverbal cues and gestures;
  • Lack of facial expressions;
  • Problem recognizing familiar people; and
  • Problems with sensory issues, such as loud noises, bright lights.

A child with AS struggles with these areas and these struggles will continue into adulthood without work. Parents can work with professionals to address these issues and attempt to minimize their child's problems into adulthood and on the job.

"Asperger's on the Job" can benefit both the employee with AS and HFA and the employer. Rudy does a wonderful job of looking at aspects of the work environment that can affect a person's success but is not necessarily within the scope of a job. Hopefully with her insight and advice future pitfalls by employees and employers alike can be minimized.

There is an interesting chapter towards the end of the book titled "To Tell or Not to Tell, That is the Question." Parents of children with AS or HFA tackle this question throughout their children's lives, sometimes starting as early as preschool. In the book Rudy does not take a stand on the issue, but rather she presents differing perspectives of those she interviewed. Also, the pros and cons of disclosure of the diagnosis are discussed. Since I had the luxury of interviewing Rudy, I asked what her belief has been regarding this issue and she explained:

“It is a personal decision but I would never put myself through the trouble again of being ‘in the closet’. I get tired of the same old questions and observations about my behavior—e.g. I get very quiet, blunt, confused and overloaded and all the other things that come with the AS territory. I want to educate the world as much as possible, so people don’t have to explain themselves as much. For others, if you simply can’t disclose, partial disclosure may be the way to go. But many of my clients have disclosed and have had good results doing so, i.e. they got the accommodations and understanding they asked for. If you are going to disclose, talk to an expert first if you can, to help you do it in the best way possible."

"Asperger's on the Job" concludes with a section on "Additional Tools." The reader is walked through a process to help them determine what type of job would suit them best. Interview tips are reviewed and useful resources are provided.

Rudy offered the following advice to parents of a young teen with Asperger's who will be preparing for a job in couple of years:

“Besides your special interests, you must know what your triggers are and have an artillery of things which counter them. Also work on social skills, empathy, taking an interest in others, etc. I’m not advocating being false, just expanding the boundaries of who you are. There are many different methods for improving your overall health and well-being to minimize your reactions to triggers and there are many ways to build your confidence. Find a way to express yourself that commands respect—that is the one thing we often get short-changed on, and it is very painful. Lastly, but most importantly, beware self-pity, it is an unhealthy addiction. We all get down about the difficulties, but we must be pro-active and have strategies. Depression and bitterness are not strategies."

With regards to an older teen with AS who is looking for his first job, Rudy explained:

“I have a thing in the book called a ‘personal job map’. It is a tool I designed specifically for people with AS to help them figure out what field they should be working in, by cross-referencing special interests with triggers and personal needs. It is very interesting to work with clients, when the lights come on and they say “oh, I really should be doing that!” or “I don’t think I want to do that after all” This should be done in high school, before college, and before career (as needed) to help guide the person on the path to personal expression and fulfillment. That is always what it comes down to."

Rudy's book is very thought-provoking and reading it made me curious to know more about her. I asked about her current endeavors and she shared the following:

“I have a few occupations: author (my 4th book is just being finished), lecturer and AS consultant, then I am also a jazz singer and comedienne, as well as owning property which I rent out. It is important to me to have a few sources of income, in case the bottom drops out on one, plus I get bored quickly, my mind is always searching for the next fun thing. I’ve just finished a screenplay which I am trying to have made into a movie. The other thing my occupations have in common is that they are all self-employment. I like autonomy, being able to make decisions without needing approval, etc."

I would like to offer a big "thank you" to Rudy Simone for providing this unique perspective into employment for those with Aspergers and HFA, as well as taking the time to share her insight and advice on many related issues. You can enter a giveaway on Help! S-O-S for Parents to win a copy of Rudy’s book (ends 10/1/10) or purchase it at Future Horizons.

Sunday, September 26, 2010

The Drug Bandwagon

Introduction
Ok, this is probably going to be a controversial post so I'll get a few things out of the way before I begin.
  1. Just a reminder that I am not a doctor - no medical advice from me should ever be taken seriously - go see a professional before you take any medication.

  2. My stance on medication: I'm not anti-medication but I am anti-harm. It's my belief that the only reason a child should be on medication is if it is doing them more good than harm.
As I write this, my youngest child has just been diagnosed with ... well, nothing in particular. Our pediatric psychologist surprised us by simply saying that since it was obvious that he had emotional issues, he should go on Risperdal.

I'll admit to being quite stunned.

I had expected a recommendation of behavioural therapy of some kind - not a drug-based "quick fix". I'd heard some horror stories about the drug but then, being a balanced person, I knew that every drug, particularly those used in children, have horror stories about them.

Testing
Most drugs tend to have effects with longer term use rather than short term. This usually means that provided that you don't get any initial bad effects, it's reasonably safe to use it for a short test period.

I've said before that it's a good idea to preface any test on your children with a test on yourself. It won't prove anything in particular but your genetic material is always going to be a closer match for your child than any test subject. It will also help you to know how the drug tastes, what it feels like and how quickly it reacts.

When looking at the effects of behavioral drugs in your children, there are a few important questions you need to ask (beyond the obvious questions about side-effects).

You need to find out;
  1. How long the drug will take to get into your child's system?
  2. How long it will stay there?
  3. How long before the drug is having an influence on your child?
  4. What symptoms to look for when it is present
  5. What symptoms to look for when it is wearing off
  6. Does the drug need to build up over time? (and if so, what happens if you don't give it on weekends?)
You need to set a definite test period which includes trigger points. After all, how can you measure behavioral change if you're tip-toeing around your child all day long? You also need to set a definite end-date. Don't test medications for months, one or two weeks is perfectly sufficient for most. In the case of some, like Ritalin, you should expect to see results in a couple of days.

In our case, the doctor recommended that we try Risperdal first at .25mg, then at .5 and finally, if there was still no effect, at 1mg. We're currently testing at 1mg having had our son on each dosage for two days. We have seen absolutely no change - and for that, I'm grateful.

You see, Risperdal has some terrible and well-documented side effects. It was only approved for use against irritability in children with autism in 2006. That's a tad recent for me.

If the Risperdal had been effective, then I'd have had to weigh up the pros and cons of using it in the long term. In this case, it would have been a very, very difficult decision.

Friday, September 17, 2010

Teenage Aspies and Fashion Sense / Date Sense

I'm often asked to contribute ideas and concepts to assist others in writing situations involving people with aspergers. I find these questions quite interesting because they get me to look into areas of my past which I've "moved-on" from. Sometimes looking at these situations with fresh eyes helps me to understand myself better and quite often it makes me cringe.

Often, as is the case here, it highlights things that I just haven't covered properly on the blog.

The question I was asked this time was about how an aspie would prepare for a first date in terms of clothes and gift shopping. The presumption is that we're talking about a male aspie on a first date.


Is it a date?
For a start, it's quite probable that the aspie wouldn't know whether it was a date or just "going out". I know that in society, these terms are often interchangeable but to an aspie who is very word-specific, they might not be. I can remember agreeing to go out with a girl and then wondering exactly where we were going out.

As it turned out, we weren't going out anywhere. Even worse, I discovered via friends that she was upset that we weren't holding hands. Nobody told me that we were supposed to be holding hands - hey, we were just going out... weren't we?

It's just as probable that an aspie won't have had any "romantic" thoughts about that particular person. He may like certain attributes but he won't necessarily feel love or infatuation. This isn't to say that aspies are emotionless but just to suggest that often these things won't appear until later in the relationship. Certainly not on the first date.

In an example from my past, I thought that this girl had beautiful hair. I hadn't considered her personality or any other part of her appearance - just her hair. It looked nice. This all would have worked out fine and maybe it would have been the start of "something beautiful" except for one thing - the very next day, she got a haircut.

For me, that ended the relationship before it had started. 100% of the things I liked about that particular girl were gone overnight.


Date Tokens (Flowers, Chocolates Etc)
Aspies, and male aspies in particular, don't usually understand the importance of flowers or other date tokens. I remember being quite shocked at my girlfriend's suggestion of flowers because she'd never shown any interest in them before. My mother loves flowers and she's always showing me her garden and talking about them. My girlfriend never ever did this - so why the sudden interest in flowers?

I've since learned that you're supposed to get flowers and that it doesn't matter whether or not a girl has any interest in them - it's simply "expected". Of course, getting flowers is a whole new level of complication. Since my girlfriend had never shown any interest in flowers and since they were obviously just a "token", it didn't make sense to me to spend a lot of money.

I didn't know where to go because it was the first time. So, initially I just went for the obvious - red roses at a florist. I paid an absolute fortune and because I knew that it was customary for the male to pay for the date, I quickly realized that I couldn't sustain a financial hit like that more than about once every fortnight. Of course, these aren't the sorts of things that you're supposed to communicate to a girl (and she kept hassling for us to go out more often). I couldn't lie and I couldn't tell the truth - so I simply clammed up. In retrospect, it probably wasn't the best thing to do.

I looked around for cheaper sources of flowers and discovered that most petrol stations sold them. I started picking them up from there but they often didn't have roses and sometimes their flowers looked worse for wear. After a bit of correction (being told that they were too scruffy), I started pick them up at supermarkets - this is probably the best place.

Of course, the problem with supermarket flowers is that there are a whole lot of different varieties to choose from. Apparently they all have their own secret messages. For instance, carnations and chrysanthemum should be bought for mothers - not girlfriends. Of course, I always chose the flowers which looked "coolest" to me. That usually meant that they had impressive decorations, like outlines on the petals, neat stripes, interesting shapes (orchids) or cool christmassy-shaped leaves.

They didn't all go down well but at least they were unique.


Clothes Shopping
A male aspie on a date wouldn't even consider clothes shopping to be important. They'd tend to think "I already have clothes" and would probably be completely unaware that he might need to get different clothes. He might even turn up in something which was comfortable but inappropriate.

I know that on several of my early dates, my clothing prevented us from getting into a club.

Clothes shopping with aspies is always difficult because the aspie will reject a lot of the fabrics based on their texture. He'd probably find a lot of visual turn offs, for example, he could decide that he hates a certain type of buttons, which unfortunately usually end up being the main fashion item of the season. Even worse, he may not like the idea of buttons at all. I had significant button turn-offs but but worst of them were "tiger buttons".

Additionally, there may be certain fabrics which attract him but aren't really recommended for dates (felt/velvet is a good example of this). I had a few velvet shirts when I was younger and couldn't stop petting myself.

Shopping is always a stressful affair for an aspie and lighting, sound and crowd issues would compound it. If he wasn't given appropriate space, an aspie could start to have real anxiety issues and he'd probably be babbling/talking a lot and playing with his hands (fidgeting) while shopping.

If he has any obvious special interests (eg: Star Wars), then his taste in clothes could lean towards that. He may tend to pick out clothing with Star Wars logos on it - or even just subconsciously pick all white to look like a storm trooper etc. His idea of cool would not be the same as everyone elses. As a kid, I was always dressing in all black. Maybe some people thought I was goth but really I just wanted to be like Darth Vader.

While shopping an aspie would probably be stressing out about where they were going or who they were going with. Aspies are often very sensitive to certain things like smoke, bright lights, loud noises and some settings (particularly discos) could set him off. He'd know that and would stress out about it. His questions would be "what if she wants to go to a disco etc" .... even when reassured (she probably won't go there), he'd keep talking about it. "I don't think I could take all those smoke smells, I really hate smoke. Smoking should be banned. Nobody should be allowed to smoke". It would appear, to an outside observer, as probably quite neurotic and repetitive behaviour.

Would an aspie ask a lot of questions about the date? No. As far as questions are concerned, he'd probably not ask too many because he wouldn't think to ask them. What would happen though is that the conversation would reveal certain inaccuracies and the person with him would seize upon them and provide advice.

This example conversation could almost be a conversation I had with my own mother about 15 years ago.

MOM: "how about these pants"
BOY: "oh no, they're not good"
MOM: "why"
BOY: "They're just not what I want to wear"
MOM: "but what's wrong with them? Is it the colour?"
BOY: "ohh... yes...and that little stripe on them "
MOM: "what little stripe?"
BOY: "down there,... " [points to something so small that probably nobody would have seen it]
MOM: "that's just a pattern"
BOY: "yes but I don't like it."
MOM: "but they all have it"
BOY: "well, I can't wear it - and anyway, it won't go with the shoes"
MOM: "what shoes"
BOY: "you know, the sneakers"
MOM: "what! you're not wearing sneakers tonight"
BOY: "but they're comfortable"
MOM: "you need new shoes"
BOY: "I want to wear my sneakers"
MOM: "they won't let you into a club wearing sneakers"
BOY: "but I don't want to go into a club"
MOM: "yes, but she might"
BOY: "why?"

.... and the conversation would continue.

You can see that the boy isn't really asking questions but that his mother is "discovering" his intentions and then just offering advice. An experienced mother of an aspie would know to do this. A friend would not. A sister would probably be a bit different - somewhere in between a friend and a mother in her reaction.

Thursday, September 9, 2010

Why Aspies Remember some things Perfectly and completely forget other things.

My memory is faulty, there's no doubt about it. On the one hand, it seems amazing. I can remember "whole conversations" which took place years ago, I can quote from literally thousands of films but ask me what someone's name is or ask me to get some things from the shops and I'll draw a blank.

In fact, face to face conversations with me at work quite often involve me subconsciously using my hands to do gestures of long hair, or glasses simply because I've forgotten the person I'm trying to describe. It's also a common sight at our local shops to see me standing around counting my fingers. I know that I've got to get five things at the shop but I can only remember three of them.

I think that a lot of my memory is based on repetition. That's no revelation really, rote learning has been around for years and despite the claims that rote learning provides only lists, not concepts, it's still recognised as one of the most effective learning tools.

Aspie Rote Learning in Action
As an aspie, I know that the true meaning of conversations eludes me most of the time. I often use the time after I've exited a conversation to analyse its meaning. I'll go over the words several times looking for inflections, trying to remember facial expressions and hand movements. It's all in there (my head) somewhere but during conversation it all goes too fast for me to pick up on it.

Sadly those moments after the other participants in the conversation have left are full of "ah-ha" and "oops" moments when I suddenly realise what's really been said. When I'm tired, I retire to my office rather than face a room full of people with diverse and complex social behaviours. In fact, it's only been about an hour since I said (half-seriously) "It's getting a bit too social in here for me" and exited the lunch room.

Back to the point ... Going over the same conversation several times, particularly in the same order, is rote learning. In analysing it, I'm subconsciously committing it to memory. It's not the whole conversation, but I'll later revisit it and think that it was. When I repeat the bits I remember, most people who were also present will think that I've captured the conversation in its entirety. In reality, I've done my own internal editing.

Of course, not all conversations have a hidden meaning. For example the meaning of; "Hello Gavin, this is John, he'll be working in Finance so can you give him a login" is clear. I don't go over the conversation multiple times and as a result, I don't learn John's name.

Special Interests
Then there's the rote learning of movie quotes. I love movies and I'll often watch the same film over and over again. I'll often repeat things that the characters say, because they're funny, they're cool or sometimes those words or accents feel good on my tongue. Sometimes I'm even analysing scenes for more information. Either way, it's rote learning again.

When I'm configuring computers, I'm so particular about getting the product keys and WEP keys right that I read them back and forth on my computer and in the documentation - even if I'm 99% certain, I'll still re-check. The repetition makes it rote learning again.

It's a pity I can't find a good way to rote learn people's names.

Wednesday, September 1, 2010

FTF: Post 8: "Sick and Tired" by by Amy Sheridan


This month's First things First post is by Amy Sheridan.

You can read it over at Amy's Blog (http://aspergerninja.blogspot.com/)

Sick and Tired
How A Single Mother of a Special Needs Child Deals with Sudden Illness

Please go there and have a read of it before you read my comments. I don't want to spoil anything.



One of the things that struck me about Amy's article is that it deals with single-parenthood. I'm sure that at times, most parents feel like single parents. I know that my wife often does, particularly when I leave before the kids wake up and I return home with only an hour or two to spare. I take great pains to ensure that I have no weekend activities - at least not activities without my family - but sometimes work and other commitments manage to consume those too.

I grew up with both of my parents married. They're still married today. My father used to leave for work before I awoke and he put himself through night-school, so we didn't see him at night either. When he wasn't learning or working, he was down the pub. On weekends in summer, he was out sailing and in winter he was in the garage making new boats for the summer. It felt like we never saw him.

I don't remember my mother being sick often. She just wasn't able to be sick. She couldn't show any sign of weakness because she usually had to do it all herself. We were certainly lucky that she didn't have any major illnesses while we were growing up because I'm not sure who would have taken care of us.

Of course, being a single parent is a different proposition altogether. In some ways it sounds easier (being your own boss, not having to consider the opinion of your spouse, having entire weekends free while your partner minds the kids and getting alimony payments for support). I suspect that this is all wrong though. It's married person's view of "the grass being greener on the other side".

Single-parenthood is not something I think about much. My wife and I work very hard as a team and we have very similar values. I just don't have any experience of doing anything by myself. I'm a loner by nature and yet I went straight from my parents to my wife. I've never actually ever been alone.

Amy's article brings it all home for me. There are times when I just can't cope with the kids and I need to walk away. I can do that because I know that my wife is there for them. Similarly, there are times when my wife says; "I've had enough, I'm going out". She just leaves the kids and takes off. Luckily, I'm around to fill the gap.

Parents need those kinds of mini-breaks and usually, they seem to need them at very short notice. Parents of children on the spectrum have an even greater need for those sorts of breaks.

There has been a lot of news lately about mothers who have killed their children. In fact, there was a well publicized incident in July and another one in August. They were so similar and so close together than at first I thought it was just the same incident being reported on twice. It wasn't. I suspect that if I were to search the news archives of the world, I could find at least one incident per month. All of these incidents are different, so I can't really generalise but I do believe that providing those parents with more breaks could have saved lives.

I also wonder how much the demise of family contributes to the lack of available support. I'm not simply talking about "break-ups" here, I'm also talking about the fact that today's grandparents are far less involved with their grandchildren than their grandparents were with them.

How do you do it when you're a single parent?

I don't know.

In Amy's case, the breaks weren't even for stress relief. They were for medical reasons. They were very urgent breaks.

Of course, as Amy says herself, the breaks wouldn't have been urgent had she remembered to take some time out.

It's one of the most obvious (and overlooked) points about "First things first"....
Take care of the carer.