Sunday, August 29, 2010

Article: A School Example - Kaelan's Bad Day.

I usually try to keep my blogs separate. I know that most people here don't want to read the sorts of things I post on my techie blog, my scout blog or my "Free Stuff" blog and I also know that my family blog tends to be a bit frivolous.

Every now and then though, I put something on my family blog which I think is relevant here.

In this case, it's an article about my eldest son Kaelan's bad day at school. Kaelan is about three weeks shy of being 10. He has Aspergers Syndrome, Non-Verbal Learning Disorder (NVLD) and ADHD-Inattentive.

School is a real struggle for him both in social and academic terms because although people with aspergers often have social but not academic issues, the NVLD and ADHD-i components ensure that he has both.

I don't have any sage advice for his bad day. It's not his school's fault - they really are a good and caring school. It's not his fault either. In both incidents, a child with better communication skills could probably have understood and communicated the problems to reduce the impact.

I guess, it's just a good example of how things can spiral out of control much more quickly for children with difficulties.

If you want to read it, it's here;

Kaelan's Not So Good Day at School


Saturday, August 14, 2010

Book Review: "The Uncharted Path: My Journey with Late-Diagnosed Autism" by Rachel B. Cohen-Rottenberg

I read the uncharted path a little while ago and wrote the review but forgot to publish it. (sorry Rachel!). I wanted to go back and talk about some specifics but first I'll publish the original review.

The uncharted path is an autism biography like none I've ever read. Unlike similar books, Rachel's main journey takes place during adulthood. The book certainly covers Rachel's childhood but it's clear that the main changes occurred much later in her life. This allows for much more mature reasoning processes and as a result, the decisions she makes carry greater significance.

More than any other book I've read, "The Uncharted Path" takes the reader out of their comfortable world and puts them right behind the eyeballs of a woman awakening to her place on the autism spectrum.

The book fleshes out many of the less obvious aspects of the female side of autism. In one section, there are somewhat ambiguous quotes from Professor Tony Attwood alongside real-world examples from Rachel's life. Rachel's examples make it easy to make sense of the more complicated and less documented aspects of autism.

In other sections, we see through Rachel's eyes as she goes about her day-to-day activities. We see the impact that autism has on each of these and the immense pressure on her to conform to neurotypical social norms. The uncharted path however is not about conformity; it's not even about wanting to conform.

Instead, Rachel opens her arms to the entire autism spectrum and embraces it in a way I've not seen before. It's common for people on the spectrum to embrace some of the high-functioning aspects while complaining about the worst of the side-effects. The uncharted path doesn't avoid these obstacles however, it meets them head on. It accepts them as part of the tapestry of autism. Even the side-effects have a part to play.

Following on from Rachel's acceptance are amazing stories of how she has been able to lessen the negative impact and reclaim her life without compromising her individuality. It's a very different type of reclamation that I'm used to hearing about. It's much more common for people on the spectrum to hide their differences and pretend to be normal in order to find social acceptance.

Rachel has already been there. In fact, she spent nearly fifty years pretending to be someone else. Her thoughts and resources explaining how this near-perfect camouflage broke down are astounding - and frightening. They've certainly led me to reconsider my own precarious existence. This leads us of course, directly back to "the uncharted path". Ultimately, it's the path of self-discovery.

I'd recommend "The Uncharted Path" to anyone on the spectrum, to anyone who has friends or relatives on the spectrum and to anyone who cares for people on the spectrum. Unlike authors of many "aspergers" books, Rachel covers the wider spectrum. Her writing is clear, concise and interesting and provides many astounding insights. Best of all, it's a book written straight from the heart.


The Uncharted Path is available from amazon and from Rachel's blog. Rachel's blog is at http://www.aspergerjourneys.com/. It's and amazing and enlightening read and I read every single post.

Article: Medical Treatment for Aspergers

Just drawing your attention to a lengthy article on www.myaspergerschild.com about medicating children with aspergers.

Medical Treatment for Aspergers

The article is pro-medication and it initially had me quite worried because there's really no proven medication which is effective against aspergers - only against the symptoms.

Eventually after a lot of waffle - important waffle - the article suggests that;

"focusing on target symptoms provides a crucial framework for care. Knowing manifestations of symptoms and characterizing their distribution and behavior in that patient is most important."

In other words medicate according to the symptoms rather than the label. This is mostly common sense.

It's the final paragraph that seems to me to be a little "bittersweet";

Pharmacotherapy is not the ultimate treatment for ASPERGERS but it has a definite place. Medication can be a critical element in a comprehensive treatment plan. There is a wider range of medications with more specific biologic effects than ever before. For individuals with ASPERGERS these newer agents are safer and less disruptive. When paired with therapists who are becoming more skilled at recognizing and managing symptoms, individuals have a greater opportunity to reach their potential and lead pleasurable lives.

Essentially it's saying that medicating isn't the answer but that it definitely has a place. I'd agree with that. Some individuals benefit from medication while others really don't need it. It depends very much on their symptoms (co-conditions).

What does concern me however is the way that it goes on to generalize that newer medications are "safer and less disruptive". That's sort of like saying, "new versions of Windows don't crash as much". They still crash, they still lose data - and, medications are still dangerous.

The article also leaves me with the feeling that the author thinks that unmedicated individuals don't lead fulfilling lives. You can't rule that out! Medication isn't the answer to everything.

On a related note, my wife dropped a bomb during our discussions last night. She said that she's accepted the fact that our son will never go to university but hopes that he might do.....". Whoa! I stopped her there. I haven't accepted that he won't go to university. Heck, I haven't accepted that he won't be "king of the world" someday. He's just turning 10. You can't limit his life.

I've accepted that my son will do his best and be whatever he will be. It's a clean slate and I'll support him in pretty much anything he wants to do (so long as it's legal).

Medicated or not, Aspies are perfectly capable of some pretty amazing achievements. Let's not go around putting limits on them.

Thursday, August 12, 2010

Book Review: Aspergers in Pink by Julie Clark

This review is for "Aspergers in Pink: A Mother and Daughter Guidebook for Raising (or being) a Girl with Aspergers" by Julie Clark

First Impressions
It's funny but although the phrase to "not judge a book by its cover" isn't meant to be taken literally, I do still find myself applying that kind of judgement - and most frequently to books. Whenever I pick up a book, particularly a non-fiction book, I tend to formulate some idea of what I expect to get out of it.

In the case of "Aspergers in Pink" my expectations were significantly skewed by the long title. I guess that my original thought was that here was a chance to familiarise myself with the elusive "female aspie". In that sense, I think that the title is misleading because the book doesn't really bring a whole heap of "female-specific" information to the table.

At the end of the book, I'm still no closer to finding out if my wife displays "female aspie" traits.

Of course, it doesn't matter because "Aspergers in Pink" is an absolutely brilliant book. It's amazingly approachable and covers the whole "settling in with new teachers at school" process in great detail. This book isn't just for girl aspies or their mothers. It's for parents of all aspies and it's for their teachers too.


The Layout
Before I go further, I feel compelled to talk a little about the layout of this book. It has perfect sized text in a really eye-pleasing font with some rather exciting shading underneath it. It's good but the thing that really excites me about the layout is the way each chapter feels consistent. They all start with quotes from Kristina (the aspie girl who is the "star" of the book). More than anything, these quotes helped to convince me that there's less difference between male and female aspies than you'd think. In fact, many of them are almost word-for-word things which I said as a child.

Then, at the end of each Chapter, there's a little summary which wraps things up from several points of view. The parents, the aspie and "others". There are also little wishlist items and thank-you's scattered throughout the book. Between chapters, there are "inside the bubble" featurettes which recount specific instances from Kristina's life. Finally, the book ends with a comprehensive index, something that many similar books seem to lack.

I really have to say, this layout is probably the best layout I've ever seen in a book of this kind. The chapters were short enough to become "quick bites" and as a result, I didn't feel like I had to set a huge amount of time aside before picking the book up.


The Material
Looking beyond the layout, the material is excellent - just not what I was expecting.

Part of the title says that it's a guidebook for being a girl with aspergers syndrome. I have to disagree there. There's plenty of information for parents in this book but virtually none for a child with Aspergers. Kristina is only in year 5 when the book ends and at no point does it provide material intended for a child of her age.

So, what is the book really about?

Well, the book covers the diagnostic process including the pre-diagnostic "run around" in which the subject gets diagnosed with the wrong things. Sadly, most people seem to go through that process as part of a formal diagnosis. It talks about the issues that arose from school psychiatrists who wouldn't accept aspergers in a girl.

The book extensively covers school and the 504 plan and makes some very interesting comparisons between an IEP and 504. It also talks about different teaching methods and how some teachers are more suitable for children with aspergers than others. Some of the examples cited are so inspirational that I'm going to suggest that my son's teachers use them at his school. Occupational therapy is also discussed.

The book covers issues with the community, family, festivals and dining out. It talks about the difficulties that parents experience getting "couple time" and finding privacy. Again, many of the issues covered are things that have recently happened in my family.


Individual Aspies vs Female Aspies
The whole time I was reading this book, I was on the lookout for differences which I could ascribe to gender. I didn't find any. When describing Kristina's Aspergers to my wife, I simply said, "she's one of those smart aspies".

I was a smart aspie. I breezed through the academic parts of school but had (and still have) plenty of social issues. The main difference between Kristina's aspergers and mine seems to be that my OCD was significantly stronger. This is in contrast to my children who generally have fewer OCD issues but have NVLD and ADHD co-conditions. My children don't just struggle socially, they struggle academically too. This difference alone seems to make their aspergers appear quite different to Kristina's.

Ultimately, I feel that the differences between aspies are less to do with gender and much more to do with individuality.


In Summary
This is not the book that the title leads you to believe but it is a very good book nevertheless. If you're a parent or teacher with primary school aged aspergers children under your care then this is one of the best textbooks available.

I really loved this book and could relate to almost everything in it.

Aspergers in Pink is published by Future Horizons and is available from Amazon.

Monday, August 9, 2010

Getting Tripped up with Language

It's funny but I usually don't feel like I get tripped up taking language and expressions literally. Not the way classic aspies do anyway.

I'm generally clear about my expressions when I use them both in real life and on this blog. If I decide to use one:

for example; "beat around the bush", I'll usually enclose it in inverted commas.

Even when talking, if I use an expression, I'll either use a different inflection or I'll draw virtual inverted commas as I use it.

So yeah, I like to think that I'm immune to expression problems.

Even so, I've had my share of bad ones most notably my "bring a plate" cringeworthy example. I don't think I'll ever recover from that. It was very, very embarrassing. Then of course, there's the time I asked someone how badly they needed to use a toilet because ours was "only for emergencies". My wife, of course loves to remind me of the time I changed a tyre by throwing the old one away.

I've grown out of them though. I've learned "all" of the expressions that exist and I pick up on new ones fairly soon (often after a little embarrassment). <-- Yes, that's all mean't to be sarcastic.

Or so I felt.

Making a Selection
My wife and I went out to afternoon tea last weekend and I was feeling really hungry. She ordered a cake and tea.

I tried to go one better. I saw a menu item marked;

"a selection of small cakes with cream or ice cream".

That sounds good I thought but just to be sure, I asked what cakes were in the selection - I hate sultanas and didn't want to get any of those.

Nope, they were all nice sounding cakes.

"Ok, I'll have that one", I said.

"Which cake sir?", came the reply.

"uh... the sele.ect..ion" I replied, as it slowly dawned on me that maybe it wasn't a plate full of petite cakes..

Why would they be "small cakes" if you only got one? I thought. That's silly.

"do I have to choose just one?", I said somewhat unnecessarily.

I looked over at my wife. She was nodding in embarrassment.

Luckily, I think our waiter belived I was joking, or he was very polite.

I chose a lemon tart and he walked away.

"oops... I think I got away with it", I said as my wife facepalmed.

Monday, August 2, 2010

FTF: Post 7: Emotional Acceptance by Cat Lichtenbelt


This month's First Things First article is by Cat Lichtenbelt. Cat writes at http://www.sensoryflow.com/.

The article is called "Emotional Acceptance" and it can be found on Hartley Steiner's blog.

Cat's article is written from the heart. She walks us through the various emotional stages she passed through on her particular journey. It's interesting because these aren't textbook stages. They're not the usual "grief cycle" stages. They're much more personal.

It's strange because my own personal stages have never included anger. If anything I'm too calm and too detached. Perhaps that's my aspergers speaking? My wife is the opposite though and the frustration of school meetings and homework issues really gets to her.

It's hard for me to show empathy when the same things which don't provoke much of a reaction from me affect her so badly.

I guess it's a bit like that movie... "Meet Joe Black" where Brad Pitt stupidly walks across the road without looking and gets hit by a car which bounces him into a truck. We both saw the same thing at the same time. We were sitting next to each other in the cinema yet where she expressed shock, I had a fit of uncontrollable laughter**.

Of course, my wife often doesn't tell me how she's feeling or what stages she goes through. That's why Cat's article is so interesting. Her journey is probably not what I would have assumed.

Initially I had a hard time relating the article back to first things first. It's not a problem with the article. It's my interpretation. I think what Cat may be saying is that as parents, we need to consider the feelings we're going through and stop trying to suppress them. By letting those feelings out, we are taking care of ourselves. We can't walk around with emotionally suppressed for long without it having a negative impact on us.


**no, I'm not sociopathic. Nobody died. It was a movie. It was just so sudden and so funny how he bounced. My brain chose to accept it as funny instead of shocking. Of course, I cry more in films than my wife. Heck, I was teary in Toy Story 3. I was teary in Revenge of the Sith. I do have emotions dammit... :-)