Thursday, December 30, 2010

Don't Underestimate Your Children's Ability to Cope with Change

In the lead up to Christmas this year, there were a lot of blog posts about coping with Christmas and helping your children cope with Christmas.

It was interesting to see how those blog posts covered all manner of topics dealing with;

  • Crowds and over-stimulation
  • Relatives who couldn't (or didn't want to) understand your child's issues
  • "Surprise" Management
  • Junk food issues
  • Travel difficulties
  • Gift-Reaction Management
  • General change management (because Christmas throws every routine out)

There were all kinds of discussions about preparing your child and family for Christmas. Some of them, if read by the wrong people would have made the children seem like "spoiled brats" and some were against the very nature of Christmas (in my opinion only).


An Example from our household
I'm quite big on "surprises", so I don't generally like surprise management tactics where you let your child know what to expect as a gift. This year, our kids got a new trampoline. In the lead up to Christmas I did mention a few times that we'll probably have get rid of the old one soon because it looks like it's about to break. In fact, the trampoline cooperated with me by unexpectedly "throwing a spring" at the boys a few days before Christmas. I never hinted that we'd get a new one but hinting that the old one would need to go soon was the way I did my surprise management.


Learning the Hard Way
When I think back to when I was young and the times when I was less than gracious, it seems to me that sometimes surprise management is a bit unnecessary. Sometimes the child simply needs to learn "the hard way".

I can remember one year, asking my parents for a bike. In further discussions, they told me how expensive it was and I changed my mind and told them that I didn't want one. They'd obviously already bought one by then, so I think I probably caused them a lot of discomfort.

It wasn't that I didn't want the bike but that I'd realised that if I got a bike, I'd get less presents generally. It was a greed thing.

On Christmas morning I was initially quite disappointed to find that I had a bike but then when I discovered that I had other presents, I calmed down and relaxed. That bike was the best Christmas present I ever got. I had it for years and I rode it everywhere. My initial reactions are long forgotten but everyone remembers my years of love of the bike.

I find that even as an adult, I have this kind of issue. Sometimes it's greed sometimes it's simply my analytical mind. Sometimes I get a present which doesn't fit into my world and I'm ungracious. I wish I could stop that initial reaction but I can't. Sometimes it takes me a few days, even weeks to become accepting of a present. I can remember my mother getting used to the fact that I had to have a new shirt hanging in my closet for a month or two before I could wear it.

Surprise management would help in some cases because then I could get used to the idea before the "gifting". Unfortunately, that would take away the joy of the initial reaction. I also genuinely love surprises which fit immediately into my world and would resent these moments being taken away from me.

The point is that I adapt. At these times my own surprise management kicks in and I think I learn a lot about myself every time it happens. I don't want someone to "surprise manage" me - and I sometimes wonder if our children feel the same way.

Obviously this isn't going to work for every child but sometimes I think you do need to let the child learn to self-manage. Sometimes they need to understand how the wrong reactions can hurt people and sometimes they need to simply learn to cope by themselves.


It all works out... eventually
It was nice to read all the follow-up posts on people's blogs. I think I only read one "bad Christmas story" and that was all due to unsympathetic relatives. The kids all coped really, really well. In fact, they coped so well that I wonder how much of that coping was due to pre-Christmas preparation and how much was due to the kids simply "coping".

I'm not advocating a complete absence of pre-Christmas preparation for your child. I certainly had a good talk with my kids about showing appreciation for gifts and about not having a meltdown. The general rule was, be good on the day because "we can fix it later". I talked about one child getting a "better" present, or someone getting something they already had or didn't like. I also covered sharing and what to do if one of their gifts suddenly broke.

I think that talk was critical.

I also talked to the boys about taking time out, what to do if they felt stressed or overloaded.

This year, since we were at our own house, that was less critical but it was still a discussion worth having. At least the boys know that they have somewhere to go if it all gets too much.

I just feel that to go much further is to over-manage and that children will find their own ways of coping. Sometimes they can surprise you with their abilities and after all, if you don't let them exercise their coping skills, how are they expected to develop them?

Tuesday, December 21, 2010

Book Review: "Sensory Parenting: From Newborns to Toddlers" by Britt Collins and Jackie Linder Olson

Sensory Parenting: From Newborns to Toddlers
Parenting is easier when your child's senses are happy!
by Britt Collins, MS, OTR/L and Jackie Linder Olson
ISBN: 978-193556722-6
Published by Future Horizons

You could be forgiven for thinking that this was just another ordinary baby book. Indeed it's not until about the third chapter that the differences really begin to hit you. Of course, those differences have been there all along, just more subtly in those early chapters.

Sensory parenting has been written by the Parent-Paediatric Team of Jackie Linder Olsen and Britt Collins and they're the ideal team for a baby book. Jackie provides a wealth of special needs parenting experience while Britt's experience comes across in the amazing array of therapies.

Normally such tag-team books can leave you a little disorientated but they've gone to great lengths to speak in "one-voice" throughout and aside from a few obvious chapters, and some scattered comments, it's not particularly obvious who is "speaking" at any one time.

Even better, when outside opinion is solicited, it's first-hand. The book contains short interviews with several practitioners, therapists and parents, all with their own particular strengths and points of view. In the appendices it includes feedback from interview questions with a panel of mothers and links to a variety of informative web sites.

At 300 pages and with very few illustrations, this is one densely packed volume.


Preparation and Newborns
My first reaction when I discovered where this book starts was sadness. Those critical early chapters are mostly going to miss their main audience. After all, they start before the baby is born and cover important topics like building a sensory-friendly nursery and making your house as sensory friendly as possible.

The problem is; who buys "baby-with-sensory-issues" books for a baby still in the womb?.

This is where genetics comes into play. If you already have one sensory child, there's good odds that there could be another. If you've got a pregnant friend with sensory issues, genetics may again be a factor - be a great friend and get her this book.

If the baby turns out to not have sensory issues, this is still a great baby book packed with good and practical advice.


Toddlerdom
This is where the book really comes into its own. The book covers the five senses, plus a couple more. It doesn't just explain their sensitivities from a baby/toddlers point of view, it covers a variety of things you can do to reduce their impact. Most importantly though, it covers natural therapies you can use to actually decrease the severity of those sensory issues.

It's all natural therapy, from light therapy for the eyes, aromatherapy for the nose, music therapy for the ears, baby massage and acupressure for the skin and several others.


More than just a baby book
At first glance, this seems to be a normal baby book. It's got lists of the major developmental milestones and it has information on potty training and tantrum handling. On sensory issues however, the book steps well outside the realm of normal parenting books.

It covers less common topics such as pets, choosing a nanny and interacting with siblings but it does so in a specific sensory manner. The nanny sections talk about the importance of a handover period and why it matters more to a sensory child. It gives tips on how to find the best person for the job and what qualities to look out for.

The pet sections talk about the sensory differences between dogs and cats, which is unusual in itself in a baby book - but then it goes on to cover ferrets, fish, rabbits, reptiles and even rats. Yes... it's that comprehensive.

The book is also fairly non-judgemental. It doesn't agonise over the benefits of breast versus bottle but gets right into the sensory issues associated with each - and how to reduce them. I did detect an overly "natural" push to it and in some places it seems to go overboard in detoxification but these are sensory issues and they are very relevant to the material.

There are also some amazing stories from mothers who have helped their babies through some very difficult sensory issues. I was particularly moved by the story of Zaky's "hands".


All in all, this is one of the most informative parenting books I've read. It's very factual and it doesn't even attempt humour but sticks solidly to the topic. If you have a sensory baby or toddler, you need this book and if you don't, it's still one of the better baby books.

Sensory Parenting: From Newborns to Toddlers is available from Future Horizons and Amazon.

Honesty Clause: I was sent a copy of this book to review at no charge

Thursday, December 16, 2010

Article: Carnival of S-O-S 1: Autism and Treatment Options

Danette Schott from the SOS Research Blog is hosting a blog carnival which I'm very proud to be a part of.

The topic is on Autism and Treatment Options and it contains 22 great posts from some of the most experienced people in the field and on a wide variety of subjects.

The topics include; weighted blankets, social stories, speech therapy, sign-language, toys, pets, deep pressure, cognitive therapy and Chinese Medicine therapy. I was surprised to find that there was even an article on therapeutic horseback riding.

Thanks Danette for organising the carnival. If you're interested in treatment options for autism, there is now a great group of articles which can all be referenced in one place.

To go to the carnival, click here or go to;

http://sos-research-blog.com/12/carnival-of-s-o-s-edition-1-autism-and-treatment-options/

Tuesday, December 14, 2010

Book Review: Craig Lancaster's "Comfort and Joy"

Just letting you know that Craig Lancaster, author of 600 Hours of Edward has released a short story for Christmas. The story is available in several formats including Kindle and several other formats including EPub and PDF.

Unlike 600 Hours of Edward, this story isn't about Aspergers but it is a touching tale of loss and human nature and it makes a surprisingly good Christmas tale.

The story is about 30 pages long and it's a great read. To say any more would spoil things.

The ebook is currently selling for $1 and all proceeds go to the Charity; Feeding America (http://www.feedingamerica.org/)

Sunday, December 12, 2010

Autism Acceptance: Traditional and Non-Traditional Autism Treatment Options

The Help! S-O-S for Parents site is having a blog carnival on traditional and non-traditional treatment options for autism. It should be very interesting to see a wide range of views and opinions on this. I'll link to the carnival pages once they become active. In the meantime however, my article, as usual is on acceptance.

Autism Acceptance
By Gavin Bollard

The world of autism has changed a lot over the last fifty years. Back in the 1960s, it was common for autistic children to be institutionalised for life. It was common for children with autism to be subjected to painful, humiliating and often life-threatening "correctional" therapies, like shock treatment, LSD therapy and behavioural punishment.

One of the most prevalent theories of the time was the "refrigerator mother", a theory which put the blame squarely on the parents. In fact, it was Leo Kanner, the "father of autism", who suggested that these children resulted from a "genuine lack of maternal warmth" despite the fact that their siblings seemed unaffected. Like most of the negative theories of the time, this theory did much more harm than good.

Things have come a long way since then. Today, autistic children more often than not live with their families. While the nuclear family support network of the past is gone, it has been replaced by an array of support and carer groups, many of which are volunteers. It's a much better world to raise your autistic child in.

While much of the violence of the past has disappeared, the crackpot and unproven theories continue today. Today we have groups which, despite all evidence to the contrary, blame immunization for their child's condition. We have groups who seek to change their children through dangerous therapies such as chelation and of course, we still have groups who feel that the best option for these children is punishment.

There's just no getting away from some of the negative parts of human nature.

Sometimes the negative thoughts don't begin as negative thoughts. Sometimes they begin with the best of intentions. Today there are parents out there who are trying every treatment they can find. They will try almost anything to make their child "normal". The lower end of the spectrum is filled with amazing diets all of which claim to work. There are different parenting techniques and different ways of hiding the differences in these children.

I'm not saying that these gentler therapies don't work, or that they're wrong or dangerous. My point is simply that they all show a lack of acceptance. They are all about changing the child or hiding the problem rather than simply accepting your child for who they are. It's hard to accept a non-verbal child who uses faeces as drawing implements, fights constantly and without apparent reason and generally makes the smallest everyday tasks seem impossible. My own children are not affected to this degree and yet their behaviour will still often set my teeth on edge. Acceptance is hard, very hard.

We all had expectations of where we wanted to be in life. None of us factored in having children on the spectrum. It's quite probable that our expectations were unrealistic to begin with but the added difficulties of autism mean that our dreams are far removed from reality. Our acceptance issues aren't really with our children - they're all to do with accepting that our real lives are quite separate from our ambitions.

Assuming that we can accept our children as they are, we then move on to the problem of how to improve the quality of their lives and our own. Fortunately today, technology is making amazing inroads and it's not uncommon for a non-verbal child to suddenly find that technology provides them with a voice. Computers and blogging did this for the previous generation and now it seems that changes in the way we input data, the ipad touch screen for example, are allowing the next wave of autistic children to reach out to us.

We're finding that the more we talk about our issues, the more we discover similarities. Many of these children have sensory issues and every day is torture for them. Reducing these sensory issues using noise reduction headphones, light shielding glasses and touch-friendly clothing can significantly reduce the anti-social behaviour of these children. Take away their daily "torture" and suddenly our child is far less explosive.

It was adults on the spectrum using technology to talk to each other which highlighted these issues and every day this technology is revealing more about how we can make our world better suited for those on the spectrum.

At the same time, these adult discussions on blogs and forums are making it clear that life on the spectrum can be fulfilling. That success and happiness don't need to be measured on neurotypical terms. We don't need a cure; we need understanding, accommodations and support. Most of all, we need acceptance from our families, our peers and our society.

We need others to understand that our needs are different. We need changes in schools and in the workplace to reduce our sensory issues; we need opportunities and chances to work and we need our parents to stop trying to cure us and remember to simply love and accept us for who we are.

Modern autism therapy is a great improvement on the past but it seems that we still a long way to go.

Monday, December 6, 2010

FTF: Post 11: "Friendships Lost Leave Openings for Others" by Gina St. Aubin

The final First-Things-First post for the year is up and it's a good one too. In fact, given the time of year, it's very appropriate.

You can read the post (as usual on Hartley's Blog, The Gift or Asperger Ninja).

Here's some of my thoughts after reading the post...

Given that it's the end of the year, I've been thinking a lot about Christmas. My kids go to a Catholic school, so there's no problems with the concept of Christmas but I often wonder about children from other religions. I can understand that Christmas is a Christian concept but I feel that it's sad that some children miss out because of choices made by others.

Would I feel the same if the shoe was on the other foot? I don't know. I sometimes feel that if there was a Jewish, Muslim, Buddhist or Hindi festival which was centred around the distribution of chocolate or presents then I'd want to be part of it.

For me, with my general dislike of organised religion (I believe that what you feel inside and how you treat others is more important than showing up at church), Christmas isn't about Santa and it isn't about a religious figure having a birthday. It's more about reaching the end of the year and taking a good look around to see who is still standing shoulder to shoulder with you.

It's about reaching out and touching those we've forgotten about or simply not had time for (Christmas cards) and remembering those we can't touch. To me, Christmas is about family and friends - and I think that applies to all people regardless of their beliefs.

Reading Gina's words "struck a chord" and made me think about all those friends who have wandered out of our lives because they became too difficult. It was happening BC (before children), people disappeared because my wife and I became a couple. Then they disappeared because we had children (and they didn't). Each time a group disappeared, a new but increasingly smaller wave of friends would appear. It was like ever-decreasing ripples. Of course, the big one was special needs. Mention this to people and they run a mile.

The circle of friends who have been with us from the beginning is now very small but fortunately those numbers have stopped shrinking. In my eyes, there is no difference between these people and family. We are one.

One of the side-effects of the friendship drop-off is that we start closing doors to future friendships. We begin to assume that everything is going to fail and when someone is out of contact for a while, we are quick to assume that they've written us off.

Gina's post reminds us that just as nature abhors a vacuum, so too does society. New friends come along when you least expect it and sometimes we simply need to be more open and accepting. It's a great message for everyone and an especially great message at this time of year.

Friday, December 3, 2010

The Uncharted Path - In Depth (and an Interview with Rachel)

About four months ago, I reviewed "The Uncharted Path" by Rachel Cohen-Rottenberg. At the time, I said that I'd publish my review first but that I wanted to get into deeper territory with it because it's a truly fascinating book.

As always, time got away from me and I forgot. (Sorry again Rachel). Anyway, if you haven't read it; my original review is here.


Who is Rachel?
In case there are any readers here who don't know Rachel (it's unlikely), I'd better start by pointing out that Rachel blogs at Journeys with Autism. It used to be called Journeys with Aspergers - and there's a whole fascinating story behind that change.

In fact, at least some of that change is core material in the book. Rachel's take on aspergers and autism is radically different from the theories you've read before.

Rachel publishes a lot of really provocative posts over at JWA and I always look forward to them. She's also a frequent commenter here.


Polar Opposites?
Rachel and I don't always agree on our interpretation of autism. In fact, it's almost fair to say that we're polar opposites. I like that.

I like the fact that someone disagrees with some of my strong-willed attempts to push through the barriers of autism and constantly reminds me that acceptance is ok too. I've taken Rachel's input on board on many occasions and I've been improved by it.

Too often I feel tempted to simply push harder when I fail. My answers are often "try again", "try harder" or "find an alternative method". Often these are right but sometimes constant trying and failing has some very negative effects. Instead of saying I've failed, sometimes we need to recognize our limits and accept ourselves for who we are.

If you've noticed that tone in some of my blog posts, you can thank Rachel for it. I've learned.


Scary Thoughts
I was fascinated and terrified by Rachel's book. Rachel was a senior technical writer for the networking and telecommunications industries. She had pretty high-powered, responsible, well-paying job, a family and everything else by which success in western society can be measured. Sure, she had some social difficulties, sure, she didn't exactly fit in but that didn't matter. She was "successful".

In many ways, Rachel's success story is a bit like mine. I like to think that I've had a degree of success in my endeavors too. In fact, one of the primary concepts behind the "Life with Aspergers" blog is that I want to prove that "success" is possible for people on the spectrum.

What terrified me about Rachel's story is that somewhere things went SNAP! The Rachel of today is a very different person to the high powered worker. By "snap", I mean that she lost her ability to do her job. Not her technical skills, not her family, just her ability to interact with people in a social sense.

My ability to "achieve" means a lot to me. If something like that went "snap" in my life, I'd probably go insane. I'm fiercely independent and I can't cope with being helpless. In fact, my school friends can probably remember the time I had to use crutches. They lasted a single day - then I decided to go without them. My independence is very important to me.

Much of Rachel's Journey is about finding her feet after things went "snap". She offers an explanation for the change - and I'm hoping the theory is wrong because now I'm constantly worrying about it. More importantly, her journey is about finding equilibrium and accepting herself and her limitations.

Best of all, her story explains how someone can still be "successful" even if they don't meet the western definition of the word. In Rachel's case, accepting herself and her new limitations was the key to regaining her independence and strength.

It's an amazing journey and it really needs to be read. You can order "The Uncharted Path" over at Rachel's blog.


An Interview with Rachel
I could have done a "normal" interview with Rachel but there were burning questions I had about things in the book. As such, you might find these questions are a little specific. Of course, if you've already read her book, you will find her answers fascinating.


In the early parts of the book, you talk about a change to the idea that "the possibilities are endless" and you seem to be accepting the fact that you're limited in what you can do. Towards the end of the book your thoughts change to the ways in which you're overcoming obstacles. How do you feel now? Do you now feel like you can do most of the important things with the right preparation?

At this point, I'm feeling very realistic about my strengths and limitations, probably for the first time in my life. The expectations that I grew up with--that I could achieve anything I wanted to--would be unrealistic for most people, not just for someone on the spectrum. So, with or without a diagnosis, I would have had to reframe those expectations at this stage in my life or end up a very unhappy person.

In terms of basic tasks--cooking, cleaning, shopping, driving, and so forth--I've been able to overcome all the obstacles, mainly because I understand so much better what I'm dealing with now. Pre-diagnosis, I expected to be able to go to the market at any time of day, chat it up with everyone I met, and come home energized. After many years of driving myself, doing so was getting harder and harder. Post-diagnosis, I go to the market during quiet times, I concentrate on doing my shopping, I smile kindly at people I meet, I exchange a few friendly words with the cashier, and if it gets really noisy, I put in my earplugs and communicate in writing.

Understanding my disabilities from the inside out has empowered me to adapt to them in all kinds of creative ways, and it's also made clear the necessity of resting and recharging my very sensitive nervous system.


Your idea that being "High Functioning" means that "some of us can pass for neurotypical" is a fascinating one particularly given the journey that you've followed. You said that you were able to pass for neruotypical in your early years but it seems clear that you don't think you can now. With your definition it follows that at various points in a person's life they may be able to be high or low functioning depending upon their mental stamina. In fact, some people may be more high functioning on some days than on others. Do you agree? Do you think that the words "high functioning" have any relevance to autism any more?

"High-functioning" and "low-functioning" are overly simplistic and two-dimensional words. They can mean so many things to so many people. It's much more important to talk about people's abilities and needs: Is a person able to speak? If so, how is this ability affected by stress, or noise, or upset to routine? If not, what kinds of alternative forms of communication are available? What tasks is a person able to do independently? What are the tasks with which a person needs assistance? These are the really important questions.


This is an amazing quote: "Confounding people is the first step toward breaking down their stereotypes about autism". I'm pretty sure that you mean stepping outside expected boundaries rather than confusing. Do you have any examples of how you've confounded people?

Sure. When I tell people that I'm autistic and happily married, I confound them. When I tell them that I'm autistic and have a wonderful, well-adjusted, neurotypical daughter, I confound them. When I tell them that I'm autistic and have a master's degree from one of the best universities in the world, I confound them. It's important work to confound people out of their preconceptions, because the stereotypes are so limiting, especially for the younger people coming of age with their diagnoses already in hand. While my parents' expectations for my life may have been unrealistic, I think it's better that I dreamed big dreams. It's gotten me much further in life than if someone had told me that my gifts were only "splinter skills" (a term I loathe with all my being) and of no great importance.


You talk about the lack of structure as the start of a downward spiral. What do you do in your life now days to ensure that your life has structure?

Mainly, I make lists. I have a list of the things that need to get done every day, and I have a list of the things that need to get done over the course of every week. That way, I have very basic goals on which to focus. I've learned that the goal itself really doesn't matter, so much as having one, because that provides me with a focus. I need to have enough goals each day to keep things structured and interesting, but not so many that life becomes overwhelming and without room for inspiration or spontaneity.

I've also started working as a volunteer copyeditor for our local paper, so that gives me even more structure. And then, of course, I have all kinds of other goals to meet---books and articles I want to write, art projects I want to do, a master's degree program I'm applying to, and so forth. There is no end of interesting things to learn and to do.


You talk about how words are sacred and you discuss honesty. Do you find yourself "witholding promises" as if the language binds you to a task? (I have a problem using the word "Promise" and won't say it unless I'm 100% certain that I can deliver).

Oh, yes! The minute I make a promise, I am committed to carrying it out, come what may. Barring emergencies, whenever someone asks me to do something, I take some time to think about it realistically before promising to do it.


You provide some amazing details about sensory overload (the sultana example the co-op shop). Does this happen often is it increasing or decreasing as you begin to learn your boundaries and triggers?

Overload seems to be happening less and less, but that's because I'm so keenly aware of what absolutely does not work and I stay out of situations that trigger it. It's not really something I have to think about anymore. I have an auditory processing condition that makes filtering words in ambient noise very difficult, and my nervous system signals me right away if I'm about to enter into something that will overload me.

I've also found that since I've started blocking my hearing in noisy situations, I'm much less overloaded by visuals. In fact, the visual world has become an absolute delight to me! For instance, when I wrote the book, I was taking a break from driving because all the visuals were becoming exhausting. Now, I'm driving again and enjoying it very much, because my auditory system gets the rest it needs on a regular basis. As a result, my whole nervous system is more rested, and my other senses can function at a much higher level.


One thing that strikes me about your story ids that you seem to "suddenly" go from being a high powered facilitator to someone who can't handle a family conversation at a restaurant. It's something that I'm terrified of because I'm at the "spinning plates" stage and I can't afford to stop. What changed and how?

A large part of it is that my auditory processing condition has gotten much worse over time. It may be from my having overworked the system in the decades before I understood what was happening, or it may just be aging. I'm not sure.

But I also want to point out that there's a difference between facilitating meetings and having a conversation in a restaurant. When I'm the facilitator, there are clear rules, people have given me the authority to move the conversation where it needs to go, and the meetings tend to take place in a quiet environment. For instance, I'm facilitating ASAN-VT meetings and I do just fine. A four-way conversation in a restaurant with a husband and two neurotypical teenagers is a whole other deal. It's unstructured, it's noisy, and teenagers are definitely not about to give me the authority to control the conversation--nor would I want them to. They have their own pace and their own style, and I completely support that.


Fascinating.
Thank you Rachel!

Monday, November 22, 2010

Article: Low Muscle Tone and Motor Clumsiness in Aspergers Children

I just want to draw your attention to what is quite simply the best article I've ever read on Low Muscle Tone in Aspergers Children;

It's called;

Low Muscle Tone and Motor Clumsiness in Aspergers Children

The article covers detection of low muscle tone (or hypotonia to give its "proper" name), how it presents, exercises that you can do with babies and age-specific exercises you can do with older children.

It covers a wide range of topics from motor clumsiness to handwriting, grasp and balance problems. It even looks at the social implications.

It's well worth a read.

Tuesday, November 16, 2010

Aspie Myths - "He Won't Miss Me"

I apologise for the excessive "male-orientated" viewpoint in this post. I tried to keep it neutral but somehow, it just works better when explained from a male viewpoint.


Here's a phrase that I've seen repeated throughout the comments on this blog on several occasions;

"I know that he won't miss me when I'm gone because he's aspie"

Today, we're going to (try to) bust that myth;


Individuals
I'll start off with a reminder that everyone is an individual. If all aspies were completely alike and predictible, they'd be a stereotype but they're not. Each is shaped by their background, their upbringing, their beliefs and their local customs.

An aspie who grew up with loud abusive parents has a reasonable chance of becoming loud and abusive themselves because in some cases, that's all they know. That's how they think adults are supposed to behave. In other cases, aspies who grew up in those circumstances do a complete about-face and say "I'm not going to be like my parents"

A lot of aspie behaviour comes down to personality and individual choice.

Some aspies choose to be good mothers, fathers, husbands, wives, boyfriends or girlfriends while others choose to be angry, abusive, controlling or simply aloof and untouchable.

It's not the aspie condition that drives the choice.


Different Types of Expression
It's commonly stated that dogs have owners while cats have staff.

It's believed that dogs are caring creatures because they whine when you leave them and jump around excitedly when you get home. Dogs seem to want to be with you while cats often seem to have specific objectives, like food or a brush, in mind.

Sure, there are some dogs and cats which break the mould. Some dogs obviously prefer their own company while some cats are amazingly sociable. These are exceptions - and the rest are the "stereotypes".

I'm ready for the deluge of complaints from cat owners.

It's not really like that though is it? Cat owners will tell you that their feline friends are just as happy to see them as dogs are. It's just that cats express in a different way.

Do you see where I'm going with this?


NTs are Actors, Aspies are thinkers
Aspies express in different ways too.

Your typical lovestruck neurotypical boyfriend will behave like a dog. He'll call you constantly, he'll buy you flowers, gifts and chocolate. He will come around to your house late at night and yowl like a cat and he'll constantly shower you with words and gestures of affection.

Wow, awesome... you must really be loved...

Except, that these guys are putting on a well rehearsed show. When they get sick of you, they simply move on to the next target and put on the same type of show. It's not unique or individual. It's just the way they show their love. Some are sincere and some are not - but the "show" is always the same.

In contrast, the aspie boyfriend is very much a thinker. To him, everything has its place and he'll try not to monopolise your time. He may be so cautious about hurting your feelings that it feels like the relationship is going nowhere because he doesn't say the words you expect to hear. Sometimes, particularly when you're hammering him with questions, he answers truthfully and discovers that you hate him for it.

Just as there is no correct answer to "do I look fat in this dress?", there is no correct answer to, "do you want to stay just friends or are we more than that?"

Aspie men will often ponder the depth of their love and friendship for hours yet when they come to talk about it, it comes out all garbled and offensive.

I know some aspies who frequently say the most inappropriate and offensive things about - and to - their girlfriends. They don't realise that the truth really can hurt. In one case, I have a friend who is no longer with his girlfriend and yet while I'm sure she's mostly forgotten about him not a day goes by when I can't tell that he's still "burning up". She's been on his mind constantly for years even though she's out of the picture.

If that isn't love, then I don't know what is.


Honour vs Wants
I've told this story before though I'm not sure in how much detail. It's a story which I think gives an understanding of how an aspie can miss and can love someone while still giving the wrong impression. It's my story;

Before I was married, When I was going out with my wife, I started to panic about my priorities. I found that I simply couldn't juggle my work and university committments with a social life.

I tried to go out once per week and I had an all male group of friends who competed for that once per week spot.

My girlfriend was keen for a more frequent relationship. She hassled me for more time and would often ask me where we would be in a certain number of years. I tried to answer honestly, taking into consideration that she would say "in two years" when I was only part-way through a six year degree.

My answers did not impress her and she continued asking them hoping for better answers.

In the end, we broke up.

I couldn't afford the time and I really couldn't concentrate on so many things at once. I could tell that she wanted more and I knew that I wasn't in a position to give it.

I didn't want her to go but I thought I was doing a noble thing by letting her go. I didn't chase her because I thought it wouldn't allow her to leave in a dignified manner. I made a huge personal sacrifice by letting the most important part of my life leave.

I thought I was doing the right thing.

She didn't think so. She didn't appreciate it for the sacrifice that it was. I didn't communicate my pain because I thought that would make it more difficult for her.

Isn't that what the hero always does in movies?

For the next year, I burned inside. I thought of her often but didn't call. I wasn't going to pass my pain on.

When she finally did get in touch with me and told me that she'd found someone else - it hurt. I sat there listening to her telling me how great this person was and how he saw her almost every night - compared to my paltry once-per-week.

I acted happy for her but really I felt sick inside.

Still, I went on being a "hero" for her. I suffered in silence for her.

It was only when she came to me and told me about being mistreated by her boyfriend that I changed. I'd learned that the relationship was a bad one and I no longer had any qualms about breaking it up.

I asked her to go out with me instead.

...and she hesitated...

It really, really tore me up. All that time when I was suffering, I thought that I was doing the best thing for her but as it turned out, I wasn't considered much more highly than the abusive boyfriend.

In fact, I ended up having to compete with that abusive boyfriend for her attention (and fortuantely I won).

In the process, I learned from what she'd told me of his behaviour. I learned how to be the sort of person she wanted.

It was horrid experience but I think it was something I needed to learn.

The way forward for me was to change my life to fit her in and surprisingly - my university grades actually improved. I think that my lonely year of self-pity and suffering had actually done my work more harm than good.

The funny thing is; even today, she's still completely unaware of just how much I missed her.

Wednesday, November 10, 2010

Aspergers Syndrome and Acting

Acting is a gift which seems to come naturally to many people with Asperger's syndrome yet only a select few follow it as a career. Dan Ackroyd and Daryl Hannah are some of the most obvious and vocal examples but there are plenty of others.

Why are Aspies good at acting?
I think that aspies tend to be good at acting because they spend so much of their daily lives acting - and from a very early age.

For example, it's true that aspies often don't get jokes (although you rarely hear us complaining when neurotypicals don't get ours). Young aspies quickly learn that it's easier to "act like you got the joke" than it is to take the brunt and embarrassment of being the only one who didn't. We are quite often called upon to "act amused".

Then there are those sad and solemn occasions where sometimes we feel intense waves of emotion - and sometimes we don't. Again, honesty in these situations leads to ostracisation. Sometimes it's simply better to "act sad" or "act shocked".

There's also all of those early intervention lessons such as speech therapy and social role-play. These lessons teach us how to enunciate, how to add tone to our otherwise "monotone" voices and how to display the various facial expressions that our peers want to see. It's all about helping us to overcome our social obstacles and "fit in" but at the same time, they're great acting lessons.

Finally, there's our perchant for quotations and vocal stimming, We don't all do it but a surprising number of aspies do. We quote from our special interests but we don't tend to copy just the words, we copy the tone - and the background ambiance. We'll quote a phrase from a film, with word-perfect inflection and often with any accompanying beeps, whirs or musical notes.

It's surprisingly common to overhear aspies quoting during unrelated everyday conversation but like our jokes, the quotes are frequently lost on NTs.

For example, I'll be talking to a friend about a project at work and he'll respond with a booming "im-pressive!". Other people around me will gloss over this strange tone, categorising it as a yet another bizarre speech inflection but I know better. I'll instantly recognise the tone and formation as Darth Vader to Luke Skywalker during their battle in Cloud City. Sometimes I'll even respond with; "...and I'm full of surprises too".

My friend and I have whole conversations which are made from quotations and speech patterns from a smattering of films - often to baffled stares from those around us.

We're also usually quite good at vocal sound effects too - not just animals but lightsabres, explosions and even vocalised music. It's all stuff that we use for stimming anyway. It feels good to make those noises.

I've heard people say that in many countries, the aspies speak with an American accent. In my case, since I prefer to watch British rather than American television, I've often been asked if I'm British - even while holidaying in the UK.


Making a life out of acting, not a Career
A lot of aspies are very good actors and some will make a career out of it. Some will act on stage and screen while others will find employment in careers which use their skills but it's not all about employment. Acting is a general skill which will help the aspie throughout their life.

We've already looked at some examples of how "acting normal" can protect the aspie from social issues. It's a skill which should be developed.

If your child's school offers a drama class, a debating team or some other public speaking option, please try to give your child a chance. You may find them willing to go but if not, at least try to encourage (bribe?) them to give it a try. Sometimes they need a gentle push to try something different but it's a skill that will serve them for life.


One last thing to remember
Acting can be very tiring work. You can't expect the aspie to "act normal" all of the time. Aspies who are doing a lot of acting will often find that they need more sensory breaks and alone time than when they're not acting.

Monday, November 8, 2010

FTF: Post 10: "Disabled x2" by Leslie O'Donnell


This month's First Things First post is "Disabled x2" by Leslie O'Donnell. As usual, it's available on the Hartley's Life with 3 Boys Blog;


Disabled x2 by Leslie O'Donnell

Leslie has a background in disability activism, psych education & special-ed teaching. She is also now a full-time special-needs parent. If you're interested in any of Leslie's other articles, you'll find them here.




Tuesday, November 2, 2010

A Day of Silence

Today (Yesterday for people who live in my timezone) was supposed to be a day of silence on the web. It was supposed to mark (or model?) the concept of people on the spectrum having communication difficulties.

It's not working.

There's quite a lot of opposition to this idea - here are my thoughts...

People with autism are not silent. We do have communication challenges but we overcome them. In fact, computers are one of the best tools for overcoming these challenges and it's amazing how much has been said recently by so many people whom others believed couldn't communicate at all.

Why would we want to be silent?

Isn't silence a mark of respect for someone who has died?

We haven't died. In fact the new-found freedom of the technological age has given us new life.

The rapid shift from slow letter writing, to email and then to instant messaging has had the effect of making us louder and giving us a chance to be heard. Not that we couldn't always be heard. If you were willing to listen, you could always have heard us. It's just that now we're a little more difficult to ignore.

Now, instead of trying to analyse gaps in conversations to look for an "in", we can just "jump in" to a forum, post our comments online or even start our own blogs and discussion topics.

If we really wanted to model how people on the spectrum were treated in everyday conversations, we could all talk online but you'd simply ignore most of what the person on the spectrum says. Just talk over them, offer unsolicited and "rude" advice - and if you feel like it, simply move your conversations away from them.

That's a more accurate model of how our inter-personal communication goes but it's nothing to celebrate and a model like that wouldn't help anyone.

Instead, I think we should just keep going on, as if this is just another ordinary day. Be ourselves and be thankful that social and technological advanaces mean that our voices are getting louder.

It's not silence at all.

Increasingly, our voices are being heard.

-----------

Some other voices from Autistic "Speaking" Day.

Corabelle from Aspie-Girl-World

Rachel from Journeys with Autism

Hartley from Hartley's Boys

Matt from Dude, I'm an Aspie


Add yours to the comments...

Friday, October 29, 2010

Book Review: All Cats Have Asperger's Syndrome by Kathy Hoopmann

I've referred to this book several times on this blog but I've never actually done a review. This post aims to change that.

When we were initially struggling with the Aspergers diagnosis for my eldest son, we jumped into a whole heap of complicated books. They were generally a good read but most of them were way too clinical.

Then I heard about this book and I decided to buy it off amazon without having even looked inside. I couldn't find it in any Australian bookstores though funnily enough, now that I know what I'm looking for, I've seen it lots of times.


First Impressions
I suspect that had I seen inside the book before I bought it, I might have had second thoughts about buying it but then, I would have been wrong. It's not just the covers that you shouldn't use to judge books by - sometimes you really do need to read them first.

At first glance, the book looks quite shallow. It's sort of like the famous "blue day book" except that all of the pictures are of cats - and I'm much more a "dog person".

The layout of the book is one big colour picture per page and one or two lines of text.

Read it through cover to cover and it's a completely different experience. Each page introduces a new concept or puts a different spin on an old one. It's just a line or two of text of text and a picture of a cat - so it's not detailed in any way but somehow between the line and the picture, you really end up thinking about what is being said.

The book is very linear though and each page builds on the others which precede it (you shouldn't start reading from the middle). By the end of the book, you have a firm grasp of the outward signs of aspergers and at least a general idea of what it feels like to have it.

You will probably have picked up a few good parenting tips along the way too.


Using the Book
My wife and I were so impressed with the book that we got our parents to read it too. It's amazing. We'd been trying to explain aspergers to them for ages and somehow this book is capable of doing it in 30 minutes,

My eldest son, who struggles with his reading but at 10 is just starting to read books without pictures, finished "All Cats Have Asperger's Syndrome" in a single sitting. It's easy enough to be accessible to him. It also provided an amazing opportunity to discuss how he feels.
In fact, I'd classify our conversation during and immediately after reading the book together as one of the most important conversations we've ever had. He really opened up.

I'd strongly recommend "All Cats Have Aspergers Syndrome" to anyone with aspergers in the family and to all teachers and practitioners who deal with children with Aspergers or High Functioning Autism. It's one of those books you simply must have available for discussions and explanations with parents, relatives and educators and it has amazing potential to get your child talking about how they feel.

All Cats have Asperger Syndrome is available on Amazon and in most good bookstores. There's even a companion book called "All Dogs have ADHD" which I haven't read yet but it sounds interesting.

Kathy Hoopmann's web site is here; http://www.kathyhoopmann.com/index.html

Honesty Clause: This wasn't a review copy. I went out and bought this book - and I'm very glad that I did.

Monday, October 25, 2010

Article: "Best and Worst Jobs for Aspergers Adults" on My Aspergers Child

I just want to draw your attention to a very good article

The article is called;

Best and Worst Jobs for Aspergers Adults

and it was published on the My Aspergers Child blog.

The article gives tips for aspie jobseekers and tips for parents with aspie children in the latter stages of school. It also contains a few good lists of the best and worst types of jobs for aspies.

It's well worth a read.

Wednesday, October 20, 2010

Get Away from Me with Your "Perfect Kids" - Part 4: School and Sports (Final)

School
I can remember taking my wife home from the school in tears because one mother had told us that she was in a panic about her son and thinking of pulling him out because he was only a level 12 reader. Our son was in his class too, but at the time, he was only on level 2.

It's not that the other parent was insensitive. She probably didn't know what level our son was on. The real issue is that parents of children with academic special needs shouldn't discuss their children's progress with other parents. There really is no comparison and it will only get you upset. Given time and resources your child will flourish. In fact, five years later, our son is just finishing up the diary of a wimpy kid - and he enjoyed it!

Unfortunately, academic talk is common at school while waiting to pick your child up. Sometimes it's better to stay in the car. Some parents delight in telling you all about their child's achievements and eagerly ask about your child's work. Sometimes it's genuine but often it's all about them feeling that their child is "better". Sadly, some people need to put others down in order to "build themselves up".

Whenever possible, make sure that you identify these types people and stay well clear of them. You'd be surprised at how much parent-talk transfers to the school yard. Other children sometimes quote their parents, "My mum said that I have to stay away from you because you're not very smart" or "because you get into trouble too much". It all impacts on the already fragile self-esteem of special needs parents and special needs kids. We don't need those kinds of friends and the less ammunition you give them (through conversation), the better.


Play-Dates and Outings
Once we arranged a play-date with another child who had aspergers. We were hoping to be able to provide our son with a good "similar" friend. Unfortunately this particular child was a "smart aspie", someone with Aspergers syndrome but without the ADHD and learning difficulties that our son has. The boy's special interest was Harry Potter and he'd read all of the books - our son by this stage had just moved up to level 4 readers. The boys had a good time at our house and they still play together occasionally.

Unfortunately, the play-date has never been returned and our son has never been invited to the other boy's house. At first I consoled my wife by suggesting that not all parents have play dates but this idea was shattered when she discovered that all of the other kids my son is friendly with have had several play-dates at this boy's house. It's just our son who is excluded for some reason.

Then there's the incident where a mother came over to where my wife and several other mothers were talking and invited all but one (guess who) to an outing. My wife came home shattered but worse... the next day our son came home from school with full knowledge that he'd been excluded because all of the other kids had talked about it.

The same thing happens at school with parties. Your child will know when they've been excluded. It's a good sign that you need to look for other, better friends with more open-minded parents. It's also important to try to establish a group of friends outside of school - that's where sports come in.


Sports
From my Point of View
Ok, this first section is a little off-topic but I think it provides some necessary background...

I've never been a big fan of sports myself. For a start, I've got low muscle tone. It's part of the aspergers condition. It doesn't mean that I can't be muscular but it means that my muscles aren't attached to my skeleton in quite the same way as other people's. They're too "floppy". When I try to work out, I'm more inclined to injure myself because my limbs tend to bend back further than other people's. I put too much strain in all the wrong places.

As a result, I've never been able to do proper workouts and I've never been a particularly muscular person. My unusual gait means that although I used to be quite good at sprinting, my general running ability was decidedly second-class. Then there's my co-ordination, or lack of it...

I could go on forever but I think that my feelings about sport are probably best summed up by a two minute scene from the IT Crowd" TV show. It's well worth a watch, quite funny but it struck a chord too. I was stunned when this aired because until then, I'd assumed I was the only person who felt like this.


Sports and the Perfect Kid
The real reason for the inclusion of sport in this series stems from my time as a parent with my son, then 5 on the school soccer team. It was painful to watch my son chase the ball around without ever getting near it. He was a tall boy for his age but even with those long legs, he just couldn't run fast enough.

Even worse though were the times when he did get the ball. At those times, the ball would hit his foot and it would be as if in slow motion. He'd look down and you could almost see him saying. "Ooh, what was that? It's a ball. I wonder where it came from". He'd look up to try to work out the circumstances behind the ball reaching him then, "People are shouting at me. What are they shouting? Oh, kick it? Where should I kick it? That way? Ok... ". I'd see him reach a decision and bring his foot back to kick the ball but by that time another player would have taken it off him.

The disappointment on his face was plain to see but as a parent I had to try to be encouraging at half-time despite the fact that it really seemed futile. It would have been ok if the other kids had been equally bad at soccer but unfortunately many of them were good, very good. Some of the dads appeared to be soccer fanatics.

As the season wore on, it began to get more and more difficult to get my son to complete the second half. He would stand around and kick the dirt, sit down on the sidelines or simply wander disinterestedly off the field. Who can blame him? To him, as it was to me, soccer wasn't a sport, it was a "standing around waiting" game - because he never got a turn.

The "icing on the cake" however came from the soccer hooligan mums and dads who started by quietly advising their kids at half time and then eventually began shouting out things like "don't give it to that kid!" I could see my son's self esteem crumbling.

We'd decided well before the end of the season that it would be our son's first and last season. We were going to have to find a replacement activity, one that didn't suffer from parent hooliganism and one in which everyone was accepted for who they are. To my surprise, scouts fitted the bill perfectly (so far).


The Series
This brings me to the end of the "Get away from me with your perfect kids series". If you've missed the other parts of the series, you can read them here;
I've covered a few common groups but I'm sure that there are plenty more. Keep an eye out because even the best groups turn bad sometimes. When groups stop being supportive, it's time to leave.

Article: My Story of SPD Through Poetry by Jennie Linthorst

I really have to say that I'm not usually a great fan of poetry - especially of poetry which doesn't rhyme. I've got a long history of writing poems though admittedly they've become quite sparse in recent years.

My poetry is usually funny and rhyme tends to help it. Very occasionally, I delve into darker matter but I usually feel constrained by time and linearity. I feel like I want to get my whole point across but also to digress. There's not enough lines to say what I want to say.

I don't read a lot of poetry online either. Usually it's too shallow for me.

THEN

Along comes Jennie Linthorst.... wow.
I think this could be the first time a poem has ever brought tears to my eyes.

Jenny has gotten over the limitations by writing a series of eight poems, each one moving deeper into what it's like to be the mother of a child with sensory processing disorder.

I'm stunned. Hartley Steiner's 30 SPD stories in 30 Days series is amazing. It's turning up some real gems - and this is one of the best.

The Lindhorst Family: My story of SPD through Poetry
by Jennie Linthorst

Have a read.

Monday, October 18, 2010

Campaigning against Apathy - The Manchester Bullying

I mentioned this on twitter/facebook a few days back as a gross miscarriage of British justice but now it seems that a National Autistic Society in the UK is beginning a campaign - and I want to encourage as many readers as possible (in all countries), to sign up and voice their opinions.

Last week, it was reported that the three boys who tortured a boy with aspergers - and this is serious torture which will leave him emotionally scarred forever - got off with 80 hours of community service.

A link to the UK Daily Mail article is below - I urge you to read it because it describes the abuse and the ruling in detail;


Evil teenagers who 'tortured' autistic boy, 17, for three days free to roam streets after judge fails to lock them up
By JAYA NARAIN


The sentence was a 3 month curfew and 80 hours’ unpaid community work.

What happened to the autistic boy was tantamount to rape and I believe that it would leave a similar level of emotional scarring.

"Now he has nightmares and he does not trust people. He is scared of everything really and now this lot are free to walk the streets."
- The boy's Grandmother

The crimes have been admitted to and the bullies took video footage of the "event". All the proof is there and yet, the sentence reflects an unbelievable degree of apathy on the part of judge Jonathan Geake who said he had taken into account the attackers’ ages, remorse and the fact they had pleaded guilty.

What about the victim who has to move to a different area and try to rebuild his life? Why is it that the judge seems to care more for the feelings of the attackers than the victims? Why is this tolerated? Would it be different if the boy wasn't autistic?

Please take a few minutes to fill in the campaign form and add to the petition for a stronger sentence.

Thanks to ClaireLouise for making me aware of the campaign.

Saturday, October 16, 2010

Article: Feelings Matching and Memory Game

I'm just drawing your attention to a resource that a reader pointed out to me at the "I can teach my child" blog (http://www.icanteachmychild.com/)

I Can Teach My Child

The article is called Feelings Matching and Memory Game and it explains how to create flashcards to teach feelings to your child.

Although the article was originally written to teach very young children, it could also be used to teach older children with aspergers the rudiments of facial expression interpretation.

It's well worth a look.

Tuesday, October 12, 2010

Get Away from Me with Your "Perfect Kids" - Part 3: Family

In part 3 of this series about when our support networks go wrong, we look at family.
If you haven't already read them, you might want to read Part 1: Introduction and Part 2: Mother's Groups.


If there's one group of people who you can always rely on for support and acceptance, it's family - right?
Right... Except when they don't.

One nice thing about family is that they'll usually stick up for you in battles against non-family, like school. They generally won't come out and support you but they'll at least make the appropriate empathetic "umms" and "aahhs" when you talk about the problems.

The problem is that families generally aren't shy about coming forward with ideas of their own. If those ideas lead to conflict with other family members then the old "favourites" games come into play and the rest of them take sides. You could find yourself on the receiving end of abuse and even "excommunication".

The Genetic Link
Families vehemently deny genetic links because it implies that there is something "wrong" with them or worse, with their bloodline. Where there is clear published research available for the genetic side of things, they'll usually try to blame a specific individual who has married in. Finally, when all else fails, they'll simply deny that your child has the condition that they have been diagnosed with, citing all manner of sterotypes and anecdotal evidence to support this.

Even worse, the negative behaviours that you'd normally put down to your child's condition get blamed on your own parenting abilities. There's nothing that destroys a parent's faith in themselves quite as well as criticism from their own immediate families. Your child's hyperactivity could be blamed on their eating habits, their "low muscle tone" is blamed on computer gaming or television and their anxiety is blamed on the excess of shelter you provide.

It doesn't stop there either; a lack of reaction to a gift is your fault for "spoiling them" or for not teaching them proper manners. Meltdowns are your fault for giving into them in the past and many of their other behaviours, such as lack of eye contact are your fault for not exercising appropriate discipline.

The problem is that some of these criticisms ring true. Perhaps you do feel guilty about some of these things. All parents have nagging doubts. Does my child really have this condition? Am I just "doing it wrong"? Rather than being a bad thing, it's a sign of a good parent to question their own judgement from time to time. Perhaps there are ways that you can reduce some of the issues with changes to your parenting style.

Reduction is one thing. Elimination is another thing entirely. Your children have been diagnosed. They have a condition and it's nothing to do with your parenting abilities. Having family attack these "weak points" just isn't fair. All it does is strain family relations. No good can come of it.


Corrective Parenting
As new parents, we all need a little advice from the older generation at times and when we want it, don't worry, we'll ask for it.

Sometimes though, we want to do things our own way. Sure, the response of the older generation to childhood behavioural problems was to spank all of children in the room rather than find out how a fight started but that was then - this is now. That world and those days are gone.

It's hard enough to do the shopping with a meltdown-prone child while there are other people about giving you disapproving stares. It's another thing entirely when you're trying to soothe an overwhelmed child while your mother or your mother-in-law is telling you loudly that all the child needs is a good whipping.


No Sympathy
Then there's the lack of sympathy. Sometimes as parents, that's all we want. A little empathy, a little sympathy. Someone to say, "You're doing a good job". Instead, we get,
"You're not the only one who has had to raise kids. We've all done it - so get over it!"

There are a few problems with this statement. First of all, I seem to remember that when I was young, the grandparents took a much more active role in the family. The baby boomer generation seems to love spending their retirement years travelling overseas, on bus trips and generally having a good time without their children.

Couple time is a thing of the past. I can remember my parents leaving us at home while they went out. That sort of thing would be unthinkable today. Parents who do that could have their children taken off them. I can also remember the older generation coming over to mind us while my parents got their much-needed couple/recharge time.

The parents of today are working increasingly longer hours. It's also much less common for mothers to be able to stay at home. Today's society depends on a double income. Then of course, there's the high divorce rate. Many of today's families are single parent.

Sure, I know we're not the only generation to have to raise kids but the conditions have changed and we need support - not criticism.


Unsupportive Partners
I could write reams about this, not that it's a problem in my family. My partner is the best and most supportive person I could wish for. It's just that this is a problem I hear about time and time again. "Despite the diagnosis, my partner doesn't accept that our children have .....".

It's difficult enough when you're facing opposition from the grandparents but when it comes from your immediate family, it makes life almost impossible. How can you effectively treat a condition that one parent doesn't believe exists? There are so many ways in which the disbelieving parent can block the treatment and support that your child so desperately needs.

If this is an issue in your family, then it needs to be sorted. You might be able to fight for your child now but eventually you'll be worn down. Instead of fighting, compromises are needed. For example, regardless of whether or not your child has aspergers, it's a given that speech and/or occupational therapy can help. Instead of concentrating on the diagnosis, concentrate on the possible treatment. Any help for your child is better than none at all.

Friday, October 8, 2010

Article: The Bollard Family by Gavin Bollard

I'm just drawing your attention to an article I wrote for Hartley's 30 Families in 30 Days SPD Fundraiser.

It's simply titled; The Bollard Family and it's available on Hartley's Life with 3 Boys.

I figured that since the series was about sensory issues, I'd just pick one of the groups of sensory issues in our family to talk about. In this case, it's oral.

Tuesday, October 5, 2010

Get Away from Me with Your "Perfect" Kids - Part 2: Mother's Group

It's obvious that parents of special needs children need support and that often they will turn to support groups, relatives, friends and acquaintances for that support. In this series, we're looking at how these support groups can sometimes turn into your worst nightmare.

This time, it's the turn of the "Mother's Group"


So, What are Mother's Groups Anyway?
I'd better clarify this because I'm sure that the support structures probably differ from one country to another. In Australia, Mother's groups are usually local groups of mothers who have all had babies at around about the same time. Hospitals and Neighborhood centers often put new mothers in touch with them.

I'll agree that mother's groups have their place. They provide a sounding board for mothers with questions about babyhood and motherhood. They provide much needed social contact for otherwise housebound mothers during that critical first year and they provide a great early warning system when your child is slow to hit those all important milestones.

There's a flip-side to all this though. Dysfunctional mother's groups can make you feel like a failure as a parent. They can make you set unrealistic goals for your children and they can make you feel excluded. It doesn't take much to tip the balance in a mother's group from functional to dysfunctional.


The Natural Parenting Influence
Mother's groups often force "natural parenting" concepts upon you - and can exclude you if you fail to follow them. Some of the terrible ideas which come from natural parenting include;

  • Cloth Nappies are Better: In fact, cloth nappies are more likely to give you child nappy rash and are quite expensive in terms of time and effort than their disposable cousins. I'm sure that there a situations where cloth nappies are better but really, it's a mother's choice to use whatever works for her.

  • Immunizations should be avoided: Some mother's groups get very pushy about the idea of immunization. Some claim it causes autism, many claim that it's unnecessary. There's enough research to suggest that immunization does more good than harm. Again though, it's a mother's choice.

  • Children should not be allowed sweets: It's amazing how many mothers freak out when there is confectionery at a child's party. They claim that it makes children hyperactive and fat. Maybe it does but only in large quantities. Again, it's a parent's choice what they expose their child to.
There are lots of other examples including television viewing, McDonald's food and herbal remedies instead of medicines. Note that I'm not saying that these things are wrong - just that mother's groups have no right to impose their own personal viewpoints on other mothers.


Breastfeeding
Breastfeeding is probably the greatest example of the natural parenting influence gone wrong. There's enough research around to suggest that usually "breast is best" but ... sometimes, it isn't.

Sometimes mothers need to be on medication which seeps through into the milk, sometimes they're not well equipped for the job, sometimes mothers have other issues like anxiety and PND which interferes with feeding and sometimes mothers just don't feel comfortable doing it.

Whatever the reason, there are times when breast is NOT best - but nobody will tell you this, least of all those other breastfeeding mothers.

Even worse, breast feeding is pushed really hard from outside the mother's group. Hospitals, neighborhood centers, doctors and the media often present a one-sided view of the issue. Mother's group is full of mothers who make breastfeeding seem easy and who talk about it as being a crucial part of motherhood. You can imagine the pressure on a new mother to conform and the feelings of failure when it just doesn't work. These mothers receive a whole lot of unnecessary advice about the various things that they should try and they're constantly fending off questions about whether or not their mother was able to breastfeed them. They receive incredulous stares and snide comments when they take out a bottle and when their children are sick or slow to meet their milestones, there is the inevitable stream of comments about this being caused by not breastfeeding.

This is bullying at it worst. There's no other name for it.


Milestones
Then there are those milestones. When did your baby first sit up, look around, walk or talk. All babies are different and while it's nice to know when those milestones start, you don't need constant reminders that your child isn't hitting them at the appropriate ages. Mothers worry about this enough without constant judgement and comparison from their mother's group.

Some mothers will proudly insist that their child is toilet trained at amazingly early ages. This is despite medical evidence which proves that children can't possibly be trained below a certain age. What these parents are really doing is "toilet timing". It simply means that their child is so regular that they are able to anticipate the times they need to use the potty and make sure that the child is in position.

They'll never admit it of course - and pity the poor mother whose child has delayed toileting. You can imagine the kind of pressure these mother's groups will put her under. When the other mothers are happily taking their children off to toilets, it's painful to be still changing nappies under their critical gaze.

It's not just the looks and the comments though. It's the fact that the new mother has to sit with her crawling child while all the other similarly aged (and younger) children run around. By being delayed in its milestones, her child singles her out as being "different" and as the constant stream of well-meaning advice "have you tried this..." and "this is how I did it..." begins, that fragile self esteem begins to crumble.


Gifted and Special Needs Children
Then of course, there's the mother with the "gifted" child. These children usually aren't really gifted but somehow the mother makes her child out to be super-special with comments like, "my child is writing her name" or "he's already reading". They talk about special schools, interviews and how their child has been accepted.

If your child has delayed speech or is showing signs of difficulty with simple tasks, these comments only serve to "rub it in" and make you feel worse. The mother of the special needs child will begin to question her own abilities as a parent not realizing that at least half of what is being said is simply "keeping up with the Joneses" style competitive comments. A lot of it simply isn't true.

There's also the other special needs children - those with a formal diagnosis. These are often the children of experienced parents or teachers who recognize the problems before they begin to exert an influence. Their child gets an early diagnosis and whole lot of early intervention and funding. They may even start reaching academic milestones before many of the other children in the group. The first "special needs" child in the group will tend to define "autism" for the rest of the parents. If he has poor social skills but good mathematical or reading skills then suddenly your non-academically minded child looks even worse in their eyes.

If you get a subsequent autism diagnosis, you may get some sympathy but the other mothers will still wonder why your child isn't doing as academically well as the other "special needs" child in the group. Again, there may be comments about your abilities as a parent.


Segregation
Finally, there's the point at which formal separation begins. The other mothers increasingly notice that your child is different. They may notice a lack social skills, frequent meltdowns or simply poor use of language and increasingly they direct their children's play towards other children.

The exclusion of the child leads to the exclusion of the mother. These parents want to talk about "happy" things. They're simply not interested in the plight of the special needs child and they don't want to understand the mother's feelings.

As the affected child is increasingly excluded from social events, such as birthday parties, so to is the mother - she's simply not invited. It starts with kiddie events but it soon spreads to adult events like "mothers nights out". The irony of course is that the mother of a special needs child probably needs the company of other adults more than most but the exclusions take all of this away from her. If she has any insecurities, the exclusion will only make them grow.

If you're in a mother's group and you're in this kind of situation, you need to get out fast. This is a sure sign of a damaging and dysfunctional mother's group. It's only a matter of time before you overhear something that you shouldn't or before these exclusions become so overwhelming that it leads to confrontation.

You're better than that.

I'd just like to acknowledge the help of my wife in writing this post. A lot of the things here are very feminine and there's no way I would have picked up on them without her help. Thanks a lot Joey!