Thanks to the Generator Blog for putting me onto some of the image generator tools- it would have saved me a lot of time if I had found this site to begin with.
I occasionally divert from the topic of blogging and take advantage of the power of blogging to spread the word about important causes. This one is especially dear to my heart as my third child, a son, is fully affected by Fragile X Syndrome. I am a carrier and had a 50/50 chance of passing carrier status or the full mutation on to each of my children, although I did not know this before he was born. I have not been able to trace any other instances of it in my family although I know my mother was a carrier too and either her mother or father passed this on to her.
I have written a post over at the Aussie Bloggers blog which gives more specific details on the Syndrome and will add links for more information at the end of the post so I will talk here more in terms of my experiences.
When my third son was born, I knew there was a problem almost right from the start. Although I was told that I should not compare his progress to that of my other children, who tended to be early in their milestones, my little Fraggle was behind in everything. On top of this he was allergic to so many foods, threw up constantly, had recurring ear infections, had problems with a turn in his eye and had the strange but endearing habits of flapping his hands when excited. He did not seem to have a lot of physical strength but could get into positions that would make a contortionist proud. At age 18 he is still so flexible that he chooses to sit watching TV with is chin propped up by his foot! We seemed to spend half our life visiting doctors when he was young. I know now that all of his symptoms added up to Fragile X Syndrome. He has an intellectual disability, autistic and ADD (attention deficit disorder) symptoms and sensory defensiveness particularly to smell and sound. Recently anxiety has become a problem. He loves the footy but cannot attend matches because of the crowd noise.
He was not diagnosed until he was nearly 4 because at that stage even pediatricians had not heard of it. Since then it has become more widely known thanks to the efforts of those involved in Fragile X groups and organizations around the world but there is still a way to go.
You may ask why you need to know about Fragile X if you do not have a family member or a friend’s family affected by it.
For a start you may know someone who is affected but this person does not have an intellectual disability. Affected girls may be average learners at school with a weakness in maths. They may be shy, have difficulty with eye contact and suffer from anxiety. Up to 6% of children diagnosed with Autism have Fragile X Syndrome. If a child has developmental and learning problems with autistic symptoms but not enough to be diagnosed with Autism it could well be Fragile X. Although there is no cure for Fragile X, as yet, the therapies and medications used to treat it can be very effective in reducing many of the problems associated with it. Diagnosis is very important.
You or someone you know may be a carrier, with none of the symptoms that characterise someone with the full mutation of the gene. The Fragile X gene seems to work overtime to compensate in carriers whereas the protein it produces is absent or in short supply in those affected.
Female carriers can have problems with irregular, infrequent menstrual cycles and early menopause and they have a greater chance of having twins. They have a higher tendency to suffer from anxiety, depression and shyness. As a carrier I am familiar with all of these, as was my mother. One in 256 women are carriers! Being aware of the reasons for it all, being treated appropriately and making some lifestyle changes made a huge difference to me. I read last week about a study showing that Fragile X can result in sleep problems because of a lack of a Circadian Rhythm. I am not sure if this applies to carriers too but it has always been the case with me. Working from home allows me to not have to worry about not having a sleep pattern. It comes in very useful when building web pages for overseas clients and I can converse with them during their working hours
Older male carriers have a high incidence of a condition called FXTAS (Fragile X Associated Tremors). If they are unaware that they are carriers this is often misdiagnosed as Parkinson’s disease.
I have started a Fragile X group on YouTube to gather together Fragile X videos made by professionals and families of people with Fragile X Syndrome. Here is one of my favorites:
There are quite a number of parents of children with Fragile X blogging - you can find some of them via the Fragile X Webring and on the blogrolls of these sites.
I would not normally ask this but please consider informing as many people as you can either about this post (or a Fragile X Site) to help this awareness day is be successful.
Here is a little bit of light relief for you to help you relax.
Smores keyboard - for when you have published something you regret and need to eat your words perhaps?
phonemyphone calls your phone for you on schedule. Think of the possibilities: You can tee up a call as an excuse for:
Rushing off to the computer when you have an irresistible urge to blog.
Keeping the kids quiet - "shhh, you know you shouldn’t be noisy when I’m on the phone" - it works sometimes.
Escaping from a boring meeting/date
Your ideas?
For those of you who have a different perspective on what you read, Wordle may be for you. Create graphic representations of words you choose or enter your del.icio.us name to create a customizable (although not clickable) tag cloud. Save it to the wordles gallery with a link to your blog (every link counts!)
For those of you who enjoy taking photos of yourself in mirrors (with your clothes on!) Karen Chan invites you to join her in her Facebook Group "Doing The Karen Cheng". You are not alone, there are almost 1,000 others there to give you support in your unusual pastime.
You may not thank me for this one - The Impossible Quiz I have got as far as the duck image - sometimes fun can turn to frustration :-). It was too large to embed here so the image is just a link.
The title may suggest recovering deleted files from a reformatted drive but I am talking about something more personal - emotional trauma and my own recovery from losing files in a hard disk reformat from hell.
As a confessed internet addict, who virtually lives online, the news that an error had caused not only my computer’s C drive to be reformatted as planned, but my D drive too, struck horror into this little geeks heart. Did I ever tell you I am only 5′ 2″? D drive was not only my document store but held the backups I had done of my C drive prior to the reformat.
Being quite neurotic about the possibility of losing data, I had a few precious moments of relief when I realized that I had been doing regular scheduled backups of most of my important stuff onto my 3rd drive - daily and weekly. I could restore these files and I would be hot to trot again. WRONG. Would you not expect Windows XP backup program to be reliable? Wouldn’t you think that it had matured over the years, since the dark ages of DOS, that it would have got over its aversion to a 256+ filename structure and recognize newly created folders?
Initial relief turned to dismay as I opened folders in my restored backup to find there were no files inside them. It was like peeling the layers of wrapping paper off in a game of pass the parcel and finding no surprise inside. Disappointment is a mild word for what I felt; my attitude towards Microsoft less than charitable and my language not suitable for republishing here.
Restored deleted folders
Always looking on the bright side of life I was comforted that at least I had backed up my work folder and my server files to my 3rd hard disk before reformat and all my Wordpress stuff had been copied to my laptop so that I could continue blogging during the reformat. Who needs photos when you have the subjects around you, after all my son’s Deb Ball is still fresh in memory and I have a DVD. Sob.
The good news is that my partner has weaved some magic and managed to get most of my files back from the wiped backup and document drive - most of the deleted files were really only pretending not to be there. The bad news is that files I deleted long ago have also been restored and come back to haunt me. There is no real structure to the 15,000 or more folders that have been recovered. I have to search through each one to hopefully find files I recognize.
Putting Thunderbird data back together again has been a Humpty Dumpty of a task, especially as there are remnants of about 30 versions of my mail and address book folders - the one I want and 29 backups that I don’t and they have the same filenames. I think I have got most of my photos back although some have not restored correctly and will not display.
I think I will survive this trauma but I am wondering what lack of posting will do to this blog, my rankings probably dipping. I have not been visiting others and commenting - apologies for that. If I do happen to have ongoing psychological problems due to all of this, anyone know of a therapist that deals with post traumatic software disorders? Maybe with regression therapy I will not need to restore files but will remember all the contents.
If I can bring myself to do so, I will share some of my recovery stories with you soon, with details of what I did to recover my data, as well as some valuable lessons I learned about backing up data. Only about 2000 folders to go through then I can start putting files back in their right locations so that I have a chance of finding them again. Then again I may just repress the memory of the last week completely.
Absolutely nothing to do with the subject of blogging, except that this is a topic on many Aussie blogs today. Today is “Australia Day“; a day of celebration in this country. The 26th January is the date of arrival of the First Fleet in Sydney Cove in 1788, which brought the first contingent of convicts, soldiers and sailors to Australia. I would hope that if the date were to be chosen these days it would not be a date linked to the first British Settlement of Australia.
The reason - It is thought that immigration to Australia commenced around 50,000 years ago, its first inhabitants arriving via the Malay Archipelago and from New Guinea via a land bridge. Subsequent to the British arrival, the Gold rush, which started in 1851, brought other Europeans, Chinese and North Americans.
After WWII Australia’s population increased rapidly; hundreds of thousands of displaced Europeans emigrated to Australia. Many more English arrived under assisted passage schemes and were colloquially called the”10 pound poms”. My own family was almost one of them. Other major points of origin were Greece, Italy, Germany, Yugoslavia and the Netherlands. After Australia’s discriminatory “White Australia Policy” was abandoned in the early 1970’s many immigrants from Asia and Africa were also able to call Australia home.
I arrived here 27 years ago from Yorkshire, England, on a working holiday and decided to stay. My father’s family were Irish. I love Australia’s for its multiculturalism; its rich diversity of culture, beliefs and experiences; My own neighbors hail from Europe, Africa and Asia. The “I am Australian” song by the Seekers sums up Australia’s rich and very long history for me. I have played it at least 5 times while writing this post.
Loz of Midlife Journey reminded me of this song in his own post about Australia Day - he talks about his own familiy’s history in our country which dates back to the First Fleet’s arrival 26th January, 1788 - an interesting read.
Colin Campbell commented “Australia Day is very like the 4th of July in the US. Great weather, lots of family and friends and just hanging out.” Thanks Colin - That pretty much sums it up.
I was able to quickly import my existing subscriptions from Bloglines into FeedDemon, keeping the folder structure too - a large amount of feeds that I have collected over 4 years or so making many of them out of date, or no longer read, meaning a long reorganization for me.
Newsgator has recently made all its RSS suite of products free. In addition to FeedDemon they also offer NetNewsWire, the Mac version, NewsGatorGo for mobiles and NewsGator Inbox for Outlook.
All these RSS services synchronize with each other. For example, I can add feeds to Newsgator Online and they will appear in FeedDemon too. Other tools offered by Newsgator are Feedstation, which allows you to download multimedia content and synchronize it with your iPod or other portable media player andNewsGator Desktop(Beta) which resides in your system tray and informs you when there is an update to one of your feeds.
I thought I would give this method of reading feeds a try; although I still prefer to get some feeds delivered by email and some via email news reader, I found that I was not visiting Bloglines frequently to read the others.
Another useful tool from Newsgator is NewsFriends for Facebook users. “With NewsFriends, you just select friends and automatically get the news they are reading. You can also pick packages of popular feeds on topics like entertainment, sports, and top news selected by NewsGator editors or add news feeds directly.”
I could not resist reading instead of organizing and came across We Blog Cartoon by Dave Walker, which is where the above image comes from. Not only does Dave offer the use of the images for blogs but gives you the the link code to use the images directly from his site. After having a pleasant respite looking at his amusing cartoons, I had better carry on trying to get out from under the RSS pile. Before I go I thought I would share this one you too.
Sueblimely |
Category: Humor, Image Tools |
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