For this purpose, I have created, in April 2009, a series of mini-challenges aimed at developing basic skills, necessary for building (or better putting things together) in Second Life. I wanted to exploit the advantages of: a) micro-learning by creating activities that could be carried out in just a few minutes; b)    learning by doing and exploratory learning by designing activities that achieved through practice and which solutions had to be “found out” by the learners themselves; c) self-paced learning by giving total freedom to participants to carry out the activities in their preferred rhythm and order; and finally d) create a (sort of) playful learning experience.

The mini-challenges were structured as follows:

• One evocative and short title
• One image that shows what has to be achieved by the student: the image of the challenge.
• One simple instruction about a task to perform which evidence of performance can be shown by the students in a screenshot With eventually, a question.
• Finally, a set of resources that would help the student to solve the mini-challenge, if required

I published each mini-challenge in a dedicated forum, and asked the participants to reply with the visual evidence of their performance. I loved designing these mini-challenges and the participants enjoyed doing them. And I have received positive feedback about them:

• “Marga this is an excelent approach to get the teachers ready with the SL basis. I enjoyed it a lot! The exercises are easy and fun, the overhead comes when you have to take the picture, upload it to flicker, get the code for the medium size and create your record here! Nice idea!” Max Ugaz
• “Thak you very much for the opportunity Margarita. The tasks are very simple. At the beginning they look somehow challenging especially for a newbie like me. But I manage to master some skill by attending workshops given either by MUVEnation colleagues or other instructors in other regions inworld. I see these are the basics.” Hamid Mernaoui

I only wish I have realised how successful this approach was and have used it to design the activities of the introductory course!

Here my first 6 mini-challenges. I have been asked permission to re-use these mini-challenges in other teaching contextsAnd I have happily accepted. These challenges are released under Creative Commons, by attribution, non-commercial. If you build upon this work, remix or translate it or even build extra mini-challenges like these, please share! I am also happy to share the verctor files I used for the keyboard and mouse in the pictures.

01 – How to take snapshots of your interface?

Take two photos of your interface with your avatar facing the camera:

• the first with the snapshot button
• the second showing the snapshot window, by using the Screen print key of your keayboard

Put the photos on your Flickr account and post it here, in medium size, as a reply to this discussion.

02 – I go nuts when I see all these numbers

Create 4 boxes on the ground:

• The first will be a perfect cube with size at X:1.750, Y:1.750, Z:1.750
• The second will be a large prim X:3.250, Y:3.250, but with Z:0.750. Mind the dot!
• The third will be a tall and thin prim X:O.950, Y:0950, Z:4.500
• The Fourth will be a wall X:0.200, Y:3.000, Z:5.000

If your prims with the modification get half buried in the ground, then lift them up by pulling the blue arrow. Now guess! What are all these numbers for? Which coordinates X, Y, Z help you to make an object larger? Which help you to make an object taller?

Want more?

• Opening edit tools – Second Life Video TuTORial QUICKTIP
• Learn building at the Ivory Tower of Primitives
• Strongly advised: The 1-prim barstool trick – Second Life Video TuTORial (If you manage to make a barstool, sit on it and add it to the photo)
• For a quick overview on building: Building is Second LIfe

03 – One meter higher please!

Take a photo of the 4 prims created during challenge 02, but positioning them precisely on the space, in the MUVEnation sandbox

• First prim, the cube, at position X:135, Y:205, Z:25
• Second, the large prim, at position X:138, Y:205, Z:26
• Third, the thin and tall prim, at position X:141, Y:205, Z:28
• Fourth, the wall, at position X:143, Y:205, Z:32

Now guess! What does the black bar with numbers in the upper part of the screen indicate? If someone asks you to put a box a little bit higher, which position coordinate do you have to change: X, Y or Z?

04 – Remind me again: How do I duplicate an object?

Take a photo of 10 walls, their size is X:0.200, Y:3.000, Z:5.000. You will have to make the first wall and then reproduce the others 9 horizontally. To duplicate just SHIFT+click+drag on X. Once finished, make sure that all your walls are spaced horizontally, 0.500 between them! What? Aha! Work out how you do this by increasing your horizontal position!

Now guess! Which coordinate do you have to drag to duplicate a prim vertically? How do you make sure that your objects are positioned precisely at 0.500 from each other?

Want more?

• Go to the Duplicating prims station in the Ivory tower of primitives at http://slurl.com/secondlife/Natoma/176/196/26
• Shift-drag to copy objects – Second Life Video TuTORial
• Copy prim
• Building in second Life Basics 4: duplicating objetcs

05 – Rotate that prim and show me the East!

Take a photo of a wall with size X:0.200, Y:3.000, Z:5.000, with the initial rotation at 0, 0, 0, when you are rotating it to the East. Your photo must show the rotation circle on Y (green) around the object and the related grid with East and West positions. Final rotation should be 0, 90, 0.

Want more?

• Go to the Rotating prims station in the Ivory tower of primitives at http://slurl.com/secondlife/Natoma/161/171/26
• Rotating a prim: http://www.youtube.com/watch?v=sHSSfCRPIZ0

06 – Under the grid

Rez two boxes, standard size in the sandbox. Sit on the first. And put the second one at Z:24.500, then rotate on X it at 225. Activate the local ruler mode and make it visible by touching the green/orange position ‘sliders’ (or tiny triangles or whatever you prefer to call them). Take a photo of yourself under the grid!

Now guess! What are the differences between world and local grid? Why the local grid is useful?

Want more?

• How to use the building grid – Second Life Video TuTORial
• Using the Grid in Second Life for Prim Placement
• Reference ruler & grid – Second Life Video TuTORial QUICKTIP

Professor Shirley Williams, from The University of Reading, led this process and developed herself the tutorials that we first used in the course:  Building with limited space, Workshop on using the Builder’s Buddy Script, Unpacking your Holodeck, and Putting content inside your Holodeck. She also blogged about it here: Holodeck: first steps at production and Builder’s Buddy First workshop

The participants found the process particularly challenging. We even had a collection of Holodeck horror tales in a dedicated forum! But despite the complexity, 50 participants effectively engaged in and completed the production of their learning scenario with either the holodeck or the Builder’s Buddy Script. To support this process, I have also developed a detailed visual tutorial of the 2in1 Production Holodeck that can be found here: Creating a simple scene with the Holodeck!

The release of these tutorials launched an interesting discussion about pro and cons of the 2in1 Production Holodeck for educators and its comparison with the Builder’s Buddy Script. You will find here 3 teacher’s point of view about their use, all based in personal experience of the tools: Jaime Álamo Serrano, professor of chemistry at the University of Valencia, Spain; Nergiz Kern, English language teacher in Turkey, presently completing a MA in Educational Technology and TESOL at the University of Manchester; and me!

For Jaime, the main criticism was related to the conceptual differences between exterior and interior scenes that are not so clear:

I would add that the difference between exterior and interior are not so clear. For instance, to say that a house is the exterior and the furniture is the interior is very restrictive idea, because you cannot ass more interior scenes as any new replaces the former. Instead think of ‘exterior’ as what will be permanent and not changed accordd different ‘changing’ (interior) scenes. Another example: think of your classroom. Some furniture will be always the same, but in each day or session you’ll use specific scenes for the topic of that class. You need different interior to practice different sets of vocabulary, botanical species, architectonic samples, and so on. So that part of the furniture, educational tools and other parts being always there should be ‘exterior’. A kitchen, another example, will have different foods each time you teach how to cook. These changing foods will be the interior.

In relation to using the Holodeck versus the BB script, Jaime’s opinion is that:

The Builder’s Buddy is much more customizable than the Holodeck. It’s open source and free.

Also the BB rezzes the components more precisely and much better than with the Holodeck

Also the BB has the possibilities to Reset and Record again  that the Holodecks lacks.

In addition when using the BB you can nest several levels of BB scripts. When using the Holodeck, only two (interior and exterior). Besides the BB provides a much nicer and intituitive menu system.

Finally, the only issue is that you have to learn to handle the channels.

My opinion is that:

• The process of using the BB script and the Holodeck are close: making scene, putting scripts, taking back, recording position… However using the holodeck is more complex. Once you learn one, the other won’t be very difficult to learn.
• On the other hand I find the holodeck, once you’ve learned how to use it, quite practical, in one single object you have all the scenes you need.
• I agree: “the Builder’s Buddy is much more customizable than the holodeck. It’s open source and free”.
• I agree: “Also the BB has the posibilities to Reset and Record again that the holodeck lacks”.
• I agree: “Using the BB you can nest several levels of BB’s. Using the holodeck, ony two (interior and exterior)”. But I still prefer the Holodeck menu, because it offers all in one.
• Finally what I really prefer in the Holodeck is the easy way to be used by visitors and owners with different set of rights , without touching the scripts.

One issue that came often during the MUVEnation programme was the complexity of using the Holodeck. I’ve received requests for help and even complaints about people who could not use the Holodeck because it was too difficult. At the time, some of these people were not yet able to position correctly a platform or a door, to modify alone a simple script, or even to retrieve the Holodeck object in their inventory or to send a landmark to another resident’s profile. Without any doubt using the Holodeck is much more difficult than using the BB script. And in the Holodeck’s user manual, it is clearly stated that the Holodeck is for people who have two months of building experience.

But what concretely is two months of building experience for an educator? In helping the students to understand and use the Holodeck I observed that those who succeeded were confident inworld and were capable of 1) managing their inventory and retrieve perfectly any element within; 2) positioning precisely objects in the grid; 3) editing the basic features of these objects using the camera independently of their avatar’s position.

At the time of this discussion, in April 2009, Nergiz Kern’s opinion was:

So, on one side we have the issue with building skills. You need to have some basic building skills as you mention. You don’t need to really now how to “build” from scratch, though. The scenes most of us built are made up of freebie objects like chairs, boards, tables, etc.. So, you only need to be able to move them and position them where you want. The only scripting skills you need for the BB script is to be able to open a script, modify and save it. For simple scenes (that are not nested), the only thing people will need to change in the script is the channel number. The version we are using, makes changing other settings easy, too. On the other side, we have the different tools, namely the holodeck(s) and the BB script. Which is easier, more intuitive and more practical? I think we can’t anwser the more practical question clearly because a lot will depend on your needs and the purpose of the scene. If you, for example, need a shell, a holodeck can be easier because it provides you with ready shells that you can, then, modify according to your needs. In order to build shells with the BB script, you need to have good building skills and it will take time. I agree with Marga, that the holodeck allows you to have everything in one place/prim with a nice menu to select the scenes you want. On the other hand, I can easily hand out the boxed scenes made with the BB script. Holodecks, because they are commercial products, have some important limitations regarding permissions. I am not quite sure yet how far these go but this makes them less useful for educational purposes, especially when you want students to work together or don’t have the money to buy everyone a holodeck. Regarding ease of use, there seem to be huge differences between different holodecks. I have unpacked, rezzed and browsed through the scenes in the Production holodeck, unpacked the scripts, etc. But reading the long instruction and reading all your “horror” stories, did not make me want to use it. Around the same time, I was provided with a Horizons holodeck. And I have to say, creating a scene was very easy, even easier than with the BB script. There is only one script and the moment you put it into an object, it’s position is recorded. It’s also much cheaper then the Production holodeck. Another advantage is that rezzing and clearing scenes is much easier, also changing permissions from private, to public or group. When rezzed, the holodeck looks like a disk which is easier to click on than a small wall pannel. It has a small wall pannel, too and even a HUD to control it, when this is want you want. There is only one problem that I have to find out about. Once you create a scene and save it, it becomes unmodifiable which is a complete nuisance if you want to change a scene or even only rename it. My conclusion is that the BB script

• is easy to use once you have used it a couple of times and practised by creating mini scenes,
• It doesn’t cost anything,
• you can easily share your creations
• you can be creative with the box. It can come in all kinds of shapes (Nick/Corwin showed me one that came in the shape of a rucksack which had a picnic scene in it).
• The nesting allows for complex structures. Again, it was Nick I thik who showed me a kind of pyramid. Each time you clicked one level the next appeared. Great for presenting something in a gradual way.

If you have a folder in your inventory with all the boxed scenes, it is not much more difficult or time consuming to drag out the scene you need than to rez your holodeck and select the scene from the menu. Also, sometimes, you might not want others to see all your scenes. You could have differen copies of your holodeck for this but then it gets complicated again. If you want all your BB scenes in one place, you can create a picture board like you did, Marga.

Nergiz has also extensively written about her experiences using the holodecks for education in:

• Building holodeck scenes in Second Life
• Holodecks and language learning
• Holodeck or Builder’s Buddy Challenge

And you, Holodecks or Builder’s Buddy Scripts, what do you think?

*At the time of the production of this tutorial, many teachers asked me how was it done. Here some information about the process: the visual tutorial was made from the experience gained during the workshop to my own students. It took me 32 hours of work. This included in particular: the review of the complete documentation of the holodeck, writing the story board/scenario, testing the instructions, 50 snapshots taken inworld to illustrate each of the steps of the tutorial, preparing the layout and putting together the objects (photos and text) into Comic Life.

Please, no more photos…, by Paula FJ

Summary

This pattern highlights the tension between personal online identity authoring and the responsibility we have towards others when their identity is enmeshed with ours. Specifically, how parents and guardians mitigate the risks associated with publishing online images of their children and the resulting contribution they make to a child’s digital identity.

Authors*

Margarita Pérez García, Steven Warburton, Phil Archer, Josie Fraser, Sally Griffin, Jim Hensman, Mark Kramer, Finbar Mulholland, Leon Cych, Jonathan Poole, Mira Vogel,  Yishay Mor. *Please ensure that the full development history remains with this pattern so that all authors are acknowledged.

Problem

Photographs have an important place in presenting, reflecting and understanding our identities, and in preserving our memories. The ease of capturing digital images combined with the proliferation of social sites and services for publishing them online make it is simple to share such content publicly on the Internet.

Parents and guardians who create an online identity that includes images and text about their children inevitably contribute to their children’s online presence. Parents and guardians can unknowingly participate in the construction of the digital identity of dependents who subsequently have little control over how they are presented or who they are presented to.

Whatever the reasons or justifications for the online publication of these images, the problem remains. An online picture of a child that is posted on the Internet contributes and/or interferes with that child’s online identity before they understand the implications and are able to build and manage their own digital identity. At worst these images can present a series of risks that need to be mitigated:

• Potential for abuse – this can be via cutting and pasting images, editing images or changing the context within which an image is viewed.
• Access to personal information – images can be used within flaming, stalking and cyber-bullying type behaviours.
• Identity theft – too much personal information can accidentally be made visible and lead to identities being stolen.
• Attraction of unsolicited communication – this could be to a parent or child represented in a given image via the online service in which the image resides, but this could also translate into tracing a person in the real-world if geotags (geographical identification metadata usually consisting of latitude and longitude coordinates) have been used.
• Misinterpretation – information may be inappropriately represented, errors amplified and false conclusions drawn, for example when images are taken out of their original context and aggregated into pornographic collections.
• Interference – images that persist over time have the potential to affect their adult life for good or ill. The created identity can interfere with the identity the children create for themselves in the future that will evolve over time as they play with their identity.
• Potential embarrassment of children in the short, medium and long term.

Forces

Parents and guardians have different reasons to publish photos of their children. They do not need any authorisation or a third person’s consent to do so – they are legally responsible and by default this includes the responsibility for their digital identity. The reasons for publishing images can be varied:

• Sharing our family life history with friends and family around the world. Often this includes non-digitally literate members who will not create an account on a photo-sharing service to access private photos and therefore images are left visible in the public domain;
• Sharing and reflecting on our lifestyle and identity as we navigate through life with children;
• For common good or social interest, for example by creating a portfolio of a rare health condition to solicit information and help.

Whatever the reasons that parents and guardians have, the online publication of photographs uncovers a number of tensions:

• The act of self-conscious identity development of the adult’s digital identity versus the contribution this makes to a minor’s digital identity, including the new perceptions and the impact of a public photo on the audience and the subject of the photo itself;
• Assuming full authority and control over a minor’s digital identity versus the lack of consent and informed judgement about that impact on the child’s identity;
• The persistent nature of online images that fix identity versus the dynamic and changing nature of a child’s identity and the freedom of identity play;
• Conflict between the parents and guardian’s personal benefit in building digital identities of familyhood and the potential dangers that are a child might become exposed to in this process;

These forces stress the need for negotiation and vigilance around any piece of visual information on the Internet that relates to a minor.

Context

Theses issues are relevant to all parents and guardians who are legally responsible for the children within their care. More broadly, they also resonate with any situation where someone manages their own or another’s online identity and therefore have an ethical responsibility to consider issues such as the online safety of those they portray. Although this pattern is drawn from case-stories that focus on the practice of putting images of children online, it is applicable to many situations where the sharing of digital content impacts on others, with a particular poignancy to vulnerable populations.

When we refer to publishing images online we do mean the activity of uploading images that include parents with their children or depict children alone, into an online portfolio (e.g. blog, social network sites like Facebook, or a photo-sharing service such as Flickr or Picassa) where the content of these sites is potentially open to public view or can be accessed by Internet search engines or aggregation tools.

Solution

The children’s views and integrity must be respected. Put them first! Accept that managing online identities is an ongoing task that requires effort and vigilance.

Concrete solutions:

• When choosing a service be aware of what kind of functionality the online photo management and sharing application offers. It is of utmost importance to choose a service that offers good privacy protection such as granular control over who can view your images.
• In Social Network Services (e.g. Flickr) use the privacy settings and the safety controls that are provided. Do not assume that privacy is the primary goal of any service provider.
• Limit the number of public photos in SNSs and make sure you set passwords or other security features to access these pictures. If the service doesn’t offer safety controls and granular access, then consider not using the service.
• Monitor any changes that the service provider may make to privacy controls in the future and review the implications in terms of access to your stored content.
• Change access permissions from public view to private contacts as necessary and do not forget to manage your network boundaries. Review your list of contacts and ask your self: ‘Who are my friends?’.
• Delete or hide photos that are vulnerable to dangers such as discrediting or suspicion.
• Add appropriate reproduction rights to your images e.g. All rights reserved or Creative Commons (http://creativecommons.org/about/licenses/)
• Prevent automated association in other peopls’s ‘favourite’ collections and galleries by monitoring activity, blocking favourites and altering default authorisation settings that allow your photos to be added to third person galleries.
• Use the service providers “report abuse” functionality to report any suspicious or unwanted activity from external parties or other site users.
• Digitally alter a photo to obscure identification of children that are included in photos with adults, for example by blurring facial features.
• Consult the child who is in the picture and check that they are happy to see it online.
• Monitor and control tagging of your photos by preventing automated and/or human generated tags being added that could be used to name people represented in the photos.
• Use geotagging with caution. If you are not sure what it does then leave it alone!
• Hide the photos of your children from public search engines.
• Avoid giving out too much information in photo titles, descriptions and comments.

Support

This pattern is supported by two case-stories:

• Pérez Garcia, Margarita. (2009). Controlling Flickr Contacts in: The Pattern Language Network case stories repository. Retrieved August 12, 2009, from http://patternlanguagenetwork.myxwiki.org/xwiki/bin/view/Cases/ControllingFlickrContacts
• Fraser, J. (2009). Other people’s identities in: The Pattern Language Network case stories repository . Retrieved August 12, 2009, from http://patternlanguagenetwork.myxwiki.org/xwiki/bin/view/Cases/otherpeoplesidentities

These two case-stories are completed with references to five others textual narratives:

• Brady, Christian. (2007, January 4). Why you can’t see pictures of my kids… in: Targuman. Retrieved August 12, 2009, from http://targuman.org/blog/2007/01/04/why-you-cant-see-pictures-of-my-kids/
• Camplese, C. (2007, January 31). Flickr You in: Cole Camplese: Learning and Innovation. Retrieved August 12, 2009, from http://www.colecamplese.com/2007/01/flickr-you/
• Couros, A. (2009, January 13). Flickr Perversion in: open thinking. Retrieved August 12, 2009, from http://educationaltechnology.ca/couros/1203
• D’Arcy, N. (2007, February 1). Deflickring in: D’Arcy Norman dot net. Retrieved August 12, 2009, from http://www.darcynorman.net/2007/02/01/deflickring/
• Fraser, J. (2007, February 3). Pictures of children online in: SocialTech. Retrieved August 12, 2009, from http://fraser.typepad.com/socialtech/2007/02/pictures_of_chi.html

Though different, these case-stories complement each other by providing insights from differing perspectives about the use of social media. In particular the use of the online photo management and sharing application Flickr to publish images of family life, including those of children alone or with their parents. The case stories come with three visual narratives depicting (i) a family image taken out of context by being added to a child pornography collection (ii) a parent’s action statement against the open publishing of images of children (iii) and a photo from an art project ‘The Privacy of Our Kids in Flickr’ uses images of children deliberately published by parents under the Creative Commons licence By-SA-NC.

Conclusions

This pattern can be generalised to any situation where we produce content that references others and make it publicly visible, for example at a conference or workshop where we may take pictures of participants and outputs and put them up on Flickr. Other related patterns may arise from the following situations:

• Publishing compromising personal online images may be against social norms, cultural codes or have a negative impact on professional life
• Publishing online pictures of minors such as pupils and students
• The ethical considerations we need to address when we knowingly create content that will contribute to a third person’s online image

For this pattern two questions remain unanswered:

• Ethically, is it up to parents to create an ID for their children?
• At what point can a child be sensibly consulted for consent on the publication of an online picture depicting them alone or with an adult? Is there particular moment at which children should be engaged with these decisions?

Finally, what can we expect in the future. Perhaps one of the solutions we will see is the ability to add digital rights management (DRM) to an image that could allow for legacy photos to have their rights reassigned at a later date so that others can delete or manage them.

References

• Keeping Kids Safer on the Internet: Tips for Parents and Guardians, http://www.missingkids.com/missingkids/servlet/PageServlet?LanguageCountry=en_US&PageId=3601
• Kids Online: Balancing Safety and Fun http://wiki.idcommons.net/Kids_Online and Kids Online Charter by IDcommons http://wiki.idcommons.net/Kids_Online_Charter
• Parents photographing and videoing school events, http://www.teachernet.gov.uk/wholeschool/familyandcommunity/childprotection/usefulinformation/photosandvideos/photoschoolevent/
• Protect Your Child From Identity Theft, http://www.parenttalktoday.com/parenttalk/2008/05/protect-your-child-from-identity-theft.html
• How safe are my children’s photos? Discussion thread in Flickr: http://www.flickr.com/help/forum/61339/?search=neighborhood

Licence

This work is licensed under a Creative Commons Licence: Attribution, Non-Commercial, No Derivatives.

Development history

The production of this pattern involved 12 persons at different levels (authoring, review and shepherding) during 12 months, from January to December 2009.

The authors of the present version should be cited in the following order: Margarita Pérez García (primary author, led and was involved in the production of the pattern from the beginning to the end, throughout 3 workshops plus continuous personal research), Steven Warburton (shepherded the working groups during the development, and from the second workshop, contributed to its continuous improvement),  Phil Archer, Josie Fraser, Sally Griffin, Jim Hensman, Mark Kramer, Finbar Mulholland (authors in alphabetic order who participated in the first workshop where the pattern idea emerged); Leon Cych, Jonathan Poole, Mira Vogel, (authors in alphabetic order who participated in the second workshop where the pattern was improved),  Yishay Mor (shepherd during the 3 workshops).

The first version of this pattern was developed during the 1st Eduserv Digital Identities workshop in January 2009 organised by the Rhizome project (http://www.rhizomeproject.org) and is the product of a working group that included: Phil Archer, Josie Fraser, Sally Griffin, Jim Hensman, Mark Kramer, Finbar Mulholland, and Margarita Pérez García. For more information see: http://digitaldisruptions.org/rhizome/2009/06/22/case-story-workshop/

The second version of this pattern was developed during the 2nd Eduserv Digital Identities workshop in March 2009 and is the product of a working group that included: Leon Cych, Jonathan Poole, Mira Vogel and Margarita Pérez García. For more information see: http://digitaldisruptions.org/rhizome/2009/08/05/scenarios-patterns-workshop/

The complexity of this pattern demanded a number of revisions. It was clear that two or possibly more patterns sat within the same problem space: online publication of images of our children; publishing of photos of pupils and students; potential contributions to a third person’s online identity; and publishing personal images that are vulnerable to discrediting or suspicion. The final version of this pattern therefore focuses solely on the online publication of images of children by parents and guardians. It was prepared by Margarita Pérez García and presented to the 3rd Eduserv Digital Identities ‘Writers workshop’ and has been updated by Margarita Pérez García and Steven Warburton after shepherding by Jim Hensman, Yishay Mor, Andy Powell, Megan Smith, and Steven Warburton. For more information see: http://digitaldisruptions.org/rhizome/2009/12/30/writers-workshop/

Citation

• MLA: Pérez García, Margarita, et al. “Putting Children First.” The Rhizome Project. N.p., 01 01 2010. Web. 11 Jun 2010. <http://digitaldisruptions.org/rhizome/2010/01/01/puttingchildrenfirst/>.
• APA: Pérez García, M., Warburton, S., Archer, P., Fraser, J., Griffin, S., Hesman, J. et al. (2010, January 01). Putting children first. Retrieved from http://digitaldisruptions.org/rhizome/2010/01/01/puttingchildrenfirst/
• CHICAGO (Documentation 1): Pérez García, Margarita and others. “Putting Children First.” January 1st, 2010.http://digitaldisruptions.org/rhizome/2010/01/01/puttingchildrenfirst/ (accessed 11 June, 2010).
• CHICAGO (Documentation 2): Pérez García, Margarita, Steven Warburton, Phil Archer, Josie Fraser, Sally Griffin, Jim Hensman, Mark Kramer, Finbar Mulholland, Leon Cych, Jonathan Poole, Mira Vogel and Yishay Mor. “Putting Children First.” January 1st, 2010.http://digitaldisruptions.org/rhizome/2010/01/01/puttingchildrenfirst/ (accessed 11 June, 2010).
• ASA: Pérez García, Margarita, Steven Warburton, Phil Archer, Josie Fraser, Sally Griffin, Jim Hensman, Mark Kramer, Finbar Mulholland, Leon Cych, Jonathan Poole, Mira Vogel and Yishay Mor. “Putting Children First.” January 1st, 2010.http://digitaldisruptions.org/rhizome/2010/01/01/puttingchildrenfirst/ (accessed 11 June, 2010).
• TURABIAN: Pérez García, Margarita, Steven Warburton, Phil Archer, Josie Fraser, Sally Griffin, Jim Hensman, Mark Kramer, Finbar Mulholland, Leon Cych, Jonathan Poole, Mira Vogel and Yishay Mor. “Putting Children First.” The Rhizome Project. Available from http://digitaldisruptions.org/rhizome/2010/01/01/puttingchildrenfirst/. Internet; accessed 11 June 2010.

For more information on citing multiple authors see: Articles with More than Three Authors

Further information

Design pattern methodology and participatory pattern workshops for digital identity see the Rhizome Project website at http://www.rhizomeproject.org See also the Pattern Language Network database at http://purl.org/planet/Main/

Contacts (and for comments and suggestions)

• Margarita Pérez García, MENON Network EIGG, BE: contact(@)margaperez.com or margarita.perez(@)menon.org
• Steven Warburton, King’s College London, UK: steven.warburton(@)kcl.ac.uk

For commenting this post, please go to: http://digitaldisruptions.org/rhizome/2010/01/01/puttingchildrenfirst/

I have more than 100 portraits to paint! These are my first 22 so far (Flickr names when real names of the artist are not available):  Julia Kay, dolores666, FlickChick2, viavisconti1, Patricio Villaroel, Jerry Waese,  Anne Watkins, Marina Mozhayeva, Andrew Mirzoian, Mariah O’Neill, Gila Rayberg, Martin Beek, Barry Farmer, Rita Flores, razor_nl, Roger Lee, Murilo S. Romeiro, Cloudbuilder, NC Mallory, RK Schlueter, Monica Machniewska, and Andy Donohue.

What I can say is that all the information I’ve gathered over the years concerns the clinical and surgical aspects of the sternal cleft repair. There is very little information ‘out there’ for lay readers about direct or side effects of the condition that may impact the children’s growth. However I make here a list of the information I have, either because I read it in an scientific article, was told by the doctors following my daughter’s case, by parents of children having a partial or total sternal cleft, and even by a young adult whose cleft was closed at the age of 2.

• isolated sternal clefts seems to be asymptomatic and many authors of scientific articles affirm that there is no impact a part from the aesthetics consequences of the chest difformity. One doctor even said to me that if I judged that my daughter could deal with her appearance, then there was no need to undertake the sternal cleft repair. I have written about this issue in Sternal cleft: repair or not repair? Mother’s questions to a scientist and in Asymptomatic sternal cleft: is the repair necessary only for aesthetical reasons?. However, Doctors Alexander A. Fokin and Francis Robicsek in: Management of chest wall deformities in Advanced therapy in thoracic surgery, in: Kenneth L. Franco, Joe Billy Putnam, Robert S. D. Higgins, J Sanchez, PMPH-USA, 2005, 548 pp. give 6 indicators for external cleft repair, amongst which a) Enlargement of the defect over time will worsen in appearance and make it more difficult to correct, and b) paradoxic respiratory movements of the chest induce dyspnea and presispose patients to recurrent respiratory infections.
• My daughter’s doctors and also three other families of children with isolated upper sternal cleft affirm that after the closure they can move their arms normally and can do any sports without problems.
• Again doctors, families and also one young female adult whose cleft was closed at the age of 2 said that the cicatrice is barely visible. Usually families do not share photos showing the result of the surgical repair. And I have found only one on the Internet.

Now, my personal experience is the following:

• My daughter’s cleft has not been repaired early because the doctors wanted to see if the sternum would grow alone and the cleft close naturally over the years. It has until a certain point: now a thin layer of the cartilage bone has grown covering a a good third of the cleft. Here you will find some recent photos. You will notice that she has a little wart on her skin where the cleft starts.
• She has never suffered from any respiratory issues when she has caught colds. Although it is a little impressive when she cries or cough. As I said before, Fokin and Robicsek point to: paradoxic respiratory movements of the chest induce dyspnea and presispose patients to recurrent respiratory infections. And in Upper sternal cleft associated with unusual symptoms, S. Sen reports a case of sternal cleft with unusual symptoms such as dysphagia, restricted lingual movements and a voice problem.
• The only thing I have noticed, and also another mother in her daughter too, is that my daugther’s neck seems shorter. I’ve read about this in an article, but cannot recall now what the article was.

Here also some recent references and a name of an expert with 27 years of experience in sternal clef repair: José Ribas Milanez de Campos, from the Thoracic Surgery Department, Sao Paulo University Medical School General Hospital, Sao Paulo, Brazil.

• Repair of congenital sternal cleft in infants and adolescents by José Ribas M. de Campos, Luiz T.B. Filomeno, Angelo Fernandez, Raul Lopes Ruiz, Hélio Minamoto, Eduardo de Campos Werebe, and Fabio B. Jatene published in The Annals of Thoracic Surgery.
• Twenty seven-year experience with sternal cleft repair by José-Ribas Milanez de Campos, João-Carlos Das-Neves-Pereira^_*, Manoel Carlos Prieto Velhote, Fábio Biscegli Jatene published in the European Journal of Cardio-Thoracic Surgery. This article was discussed publicly in the letters to the editor. See: Use of titanium plates in repair of adult complete sternal cleft by Khaled E. Al-Ebrahim and Reply to Al-Ebrahim by José Ribas M. de Campos and Joao-Carlos Das-Neves-Pereira.

The MUVEnation open online programme gave me the opportunity to organise such a work. First, back in September 2008, I coordinated the efforts of 33 partcipants in the introductory course for the identification of more than 100 tools used for teaching and learning in Second Life. Later, in March 2009, 55 education professionals (lecturers, researchers, learning technologists and teachers) have collected, tested and fully described more than 150 tools for teaching and learning in Second Life. The result of this collective work has been transformed into a book, published as an Open Educational Resource under CC licence by attribution unported, so anyone is free to distribute without restrictions: adapt, translate, re-mix and improve it.

The book is presently under a last quality control review for public release and it should be available by the end of March 2010. The book was edited by me in collaboration with Jaime Alamo, professor at the University of Valencia. The list of authors who contributed to the collection is here:

Editors

• Margarita Pérez García
• Jaime Álamo Serrano

Reviewers

• Jaime Álamo Serrano
• Sam Boswell
• Louise Drakley
• Laura Fedeli
• Benoît Lacherez
• Erena Leon
• Karsten Oster Lundqvist
• Margarita Pérez Garcia
• Shirley Williams
• Darren Wright
• Production editor & design
• Margarita Pérez García

Authors

• Jaime Álamo Serrano
• Teresa Almeida d’Eça
• Cristina Arnau
• Serkan Baykusoglu
• Antonella Berriolo
• Sam Boswell
• Pilar Cantero
• Dolors Capdet
• William Colmenares
• Caterina Coluzzi
• Emilia Corsi
• Cristina De Angelis
• Cedric De Meyere
• Carmela Dell’Aria
• Eugenio Di Rauso
• Louise Drakley
• Antonella Elia
• Laura Fedeli
• Luca Ferrari
• Bex Ferriday
• Gloria Gómez-Diago
• Dafne Gonzalez
• Melanie Hughes
• Moira Hunter
• Evelyn Izquierdo
• Nergiz Kern
• Samuel Landete
• Erena Leon
• Angelina Macedo
• Elisabetta Marzetti
• Hamid Mernaoui
• Michele Moretti
• Elisabetta Nanni
• Giuliana Perco
• Margarita Pérez García
• Ljuba Pezzimenti
• Raul Reinoso
• Sabine Reljic
• Melanie Rubenbauer
• Ramiro Serrano
• Adelina Sporea
• Annamalia Tancredi
• Patrizia Tancredi
• Max Ugaz
• Anna Vartepetiance Salmasi
• Azucena Vazquez
• Steven Warburton
• Darren Wright

The 150 tools described in the book were organised in the following sections: communication, delivery of learning material, content creation, organisation of meetings and events, collaboration, assessment, feedback and tracking, gaming, and multi-purpose tools. The book also has a special section for Sloodle with descriptions of : Sloodle Chat Logger or WebIntercom, toolBox HUD (gestures, microblogging), Freemail for Sloodle (to be integrated inside the HUD), Distributor or Vending Machine, Presenter, Browser, Metagloss, PictureGloss and PrimGloss, Reg&Enroll booth (Enroll to a group/course), Choice, StipendGiver, Quiz-collaborative-game, Quiz Chair (for multichoice, true-false, short answer and numerical), Quiz-on-pile and the Awards System.

An excerpt of the chapter 01 – Communication can be downloaded here: Chapter 01 – Communication

Mon fils a deux mois et est atteint de cette malformation. Nous avons vu un chirurgien de Necker qui programme l’intervention prochainement. Comment s’est déroulée l’intervention ? et l’hospitalisation ? Quelles ont été les suites ? Merci pour vos réponses, car la peur de l’inconnu nous angoisse beaucoup. (Voir son commentaire en contexte ici)

Moi, aussi je me suis posé ces questions et n’ai pas pu trouver de source faisant autorité en la matière, ni de témoignages de parents accessibles sur Internet. Alors, je me suis adressée directement à Necker et aussi contacté des parents qui avaient laissé des commentaires sur ce blog , ainsi que des parents d’enfants ayant été opérés à Necker.

La fente sternale de ma fille ne concerne que le tiers supérieur du sternum et elle est isolée; c’est-à-dire qu’elle n’est pas associée à d’autres malformations ou maladies. J’avais donc le choix de l’opération selon que je considérais que ma fille pouvait vivre ou plutôt bien vivre avec sa malformation de la poitrine car cette malformation ne nuirait pas son à développement. Nous devions nous décider très vite, car plus l’enfant grandit mois sa paroi thoracique est “malléable”.

Je devais donc décider d’une intervention chirurgicale pour des raisons esthétiques sur un corps qui n’est pas le mien, qui ne m’appartient pas et surtout, sur un corps qui est sain. J’ai écrit sur ces questions dans Sternal cleft: repair or not repair? Mother’s questions to a scientist. Et je vous livre ici le compte-rendu de mes recherches:

Les questions-réponses aux médecins

• Mon Pédiatre n’a pas trop d’avis sur la question car Il ne s’y connaît pas du tout. Mais il s’est porté volontaire pour m’aider à comprendre le jargon médical des articles scientifiques, et après lecture, m’a conseillé de l’opérer. Il ne peut cependant m’éclairer sur les questions relatives à l’interventions, ni aux phases pre et post opératoires.
• Le docteur Faiza Khan a pris le temps de me répondre de docteur à patient et aussi de maman à maman. Elle me conseille la réparation de la fente sternale, tout en essayant de comprendre les raison de mon angoisse face à l’inconnu.
• J’ai posé 10 questions par email à l’équipe de médecins qui suit mon enfant à Necker. Le secrétariat du service m’a transmis les réponses (ici en gras) aux questions suivantes:
  • Quelle est la méthode de réparation chirurgicale que vous utiliser pour refermer la fente sternale? La méthode consiste à rapprocher.
  • Existe-t-il des méthodes d’intervention, je pense à des implants, qui pourraient nous permettre d’opérer mon enfant plus tard lorsqu’elle pourra participer à la prise des décisions? Non
  • Existe-t-il des interventions qui laisseraient une cicatrice horizontale? Non
  • Quelle est la durée de la période de rétablissement, lorsque l’enfant doit rester à la maison? 45 jours
  • Est-ce douloureux et pendant combien de temps après l’opération? Lorsque mon enfant sera chez vous, elle sera prise en charge, mais après à la maison quels sont les soins que nous devons lui prodiguer? Les douleurs peuvent persister pendant 1 semaine. Il n’y a pas de soins particuliers à prévoir à la maison
  • Combien de temps, après l’opération, sera-t-il nécessaire pour récupérer un mouvement total des bras en arrière? Pourra-t-elle pratiquer n’importe quel sport par la suite? Il faut compter 2 mois pour la récupération. La reprise des sports sera possible par la suite.
  • Avez vous des photos des patients opérés dans vos services où l’on peut apprécier le résultat de l’intervention? oui, il existe des photos.
  • Qui va opérer mon enfant? Les opérateurs seront le Pr. Glorion et le Dr. Padovani.
  • Est-il possible de se mettre en contact avec les autres familles des enfants opérés par vous? Je pense aux deux cas de fente sternale dont vous m’avez parlé. Oui dans la mesure où eux sont d’accord.
  • Y-a-t-il un soutien psychologique dans votre service, à la disposition des familles et des enfants qui vont subir une intervention chirurgicale? Oui, nous avons une psychologue dans le service.

Les entretiens avec les parents

J’ai contacté plusieurs parents d’enfants dont la fente sternale a été réparée. Dans tous les cas, les enfants ont été opérés entre les deux et les dix-huit mois de vie. parler de la malformation de son enfant n’est pas facile, d’autant plus que certains parents, tout en reconnaissant l’utilité des information que je publie ici depuis bientôt 5 ans, avaient peur de trouver des informations appartenant à leur vie privée diffusées sur Internet. Aussi il m’a été impossible d’obtenir de photos d’enfants après intervention. Mais ces quelques conversations de parent à parent m’ont aidé à apaiser mes angoisses. Une maman très généreuse a passé plus d’une heure au téléphone avec moi. J’ai été aussi contactée par un adulte ayant été opéré enfant à deux ans.

• Il s’agit d’une opération longue.
• L’enfant ne souffre pas trop compte tenu du programme de gestion de la douleur postopératoire.
• Le rétablissement peut prendre de 10 à 15 jours à l’hôpital, ensuite l’enfant peut rentrer à la maison.
• Les soins prodigués à la maison sont tout à fait gérables par les parents, pour les soins les plus délicats on peut toujours aller en milieu hospitalier.
• La cicatrice s’estompe très rapidement et elle est à peine visible au bout de quelques années.
• L’enfant peut très rapidement recommencer une vie normale: tout faire, y compris le sport.

Dans deux cas, les fils non résorbables utilisés pour refermer la fente sternale ont cassé ou se sons détendus. Dès lors on considérerait l’utilisation des fils résorbables. J’ai aussi entendu dire que lorsque les fils non résorbables cassaient ils pouvaient ressortir légèrement créant des protubérances sous la peau. Mais franchement j’ai déjà du mal à imaginer le résultat de l’intervention, encore moins les complications.

La recherche d’informations scientifiques

J’ai continué ma recherche de sources scientifiques pour savoir s’il y avait d’autres raisons, mis à part les raisons esthétiques, justifiant la réparation des fentes sternales isolées ou asymptomatiques. Dans le post Asymptomatic sternal cleft: is the repair necessary only for aesthetical reasons?, je rends compte d’un article scientifique où l’on trouve 6 indicateurs pour la réparation des fentes sternales, au delà des raisons purement esthétiques. Deux indicateurs de la liste m’ont amenée à reconsidérer l’opération:

• “Enlargement of the defect over time will worsen in appearance and make it more difficult to correct”
• “paradoxic respiratory movements of the chest induce dyspnea and presispose patients to recurrent respiratory infections”.**

Mon enfant sera opérée le 7 avril 2010, si j’obtiens l’accord de la caisse d’assurance maladie belge.

** Alexander A. Fokin and Francis Robicsek, Management of chest wall deformities in Advanced therapy in thoracic surgery, Kenneth L. Franco, Joe Billy Putnam, Robert S. D. Higgins, J Sanchez, PMPH-USA, 2005, 548 pp. Alexander A. Fokin est également réferencé pour son classement d’indications pour la réparation des fentes sternales dans: Michael J. Sundine, Treatment of sternal clefts in Reconstructive Surgery of the Chest, Abdomen, and Pelvis, Gregory R. D. Evans, Informa Health Care, 2004, 473 pp.