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!