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:

More information can be found at:

• Fragile X Association of Australia
• National Fragile X Foundation - USA

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.

PS - A podcast is available of a Fragile X Awareness Day segment on today’s Australian ABC National Radio Breakfast Show

Post from: Blogging Sueblimely

Fragile X Awareness Day 22nd July 2008

Congratulations to Jon Pfeffer and his father Steve on the completion of their mammoth bike ride, starting in Brisbane 4th May and finishing today in Broome. The Journey from east to west Coast Australia was over 5,000km so this is no mean achievement! Training and planning the event began back in October 2006. Jon’s stepbrother-in-law, Nick, joined them for the first 1,000km of the journey.

View Larger Map

Steve and Jon have been riding to raise awareness for BeyondBlue and and awareness and funds for Plan Australia, which respectively work to fight depression and child poverty. They have been blogging about their preparation and journey on their Brisbane to Broome Charity Bike Ride site.

Romance was in the outback air when Jon proposed to his girlfriend Emelie, when he met her at Mt Isa airport on 30th May. The sign on the ground says “Will you marry me?”.  Many congratulations Emelie and Jon.

If you want to offer your congratulations you could do so via the Brisbane to Broome Facebook Group. Donations to show your appreciation of the effort and dedication of these intrepid travellers and to support the work of Plan can be made on the Brisbane to Broome Everyday Hero Page.

Post from: Blogging Sueblimely

Riding, Fundraising, Blogging in Australia

Blogger’s have a voice can use it to spread the word. Brighter Planet recently put out a challenge. Their aim was to get 350 bloggers displaying the 350 badge on their sites and in return they offered to offset 350 pounds of carbon in the participants names! They have achieved their goal but are carrying on with their campaign.

They liken the offset of 350 pounds of carbon to flicking off 100 lightbulbs for a day or going two weeks without your car. So let us together try to turn off thousands of lightbulbs and display the 350 badge on our sites and add our voices to the growing noise 350.org is making.

To get more details and the code for the badge visit 350.brighterplanet. To find out more about the 350 movement and how you can help in other ways visit the 350.org site

Post from: Blogging Sueblimely

350 Ways To Save This Planet

In gratitude for your comment I will follow this up with a post talking about the methods you suggest, with a link to your blog or a blog post of your choosing.

Suzie has a BHAG (Big Hairy Audacious Goal) and towards this aim she giving out prizes and holding a Tweetathon tonight. I am going to say no more as you can read all about it on Abundance Highway. (my evil plan to get you to visit her site and take part - should I have admitted that I wonder?)

Tweetathon and Team World Update

The Tweetathon came about in a discussion between Suzie, Liz Strauss and Glenda Watson Hyatt You can read more about this at:

Be The Law of Attraction in Action: Join Team World

The Prizes

This is one good example of the usefulness of Twitter for bloggers

If you are contributing a comment regarding how to make a blog post go viral and want me to link to one of your blog posts, rather than your blog, then please leave the link in your comment.

Post from: Blogging Sueblimely

Tweetathon Tonight - Pass It On

I am pleased to join Mimi of Mimi Writes in encouraging bloggers to join in unity with bloggers from all around the world in the 4th Blog Blast For Peace Day, 4th June, 2008.

“One of the hardest things in life is having words in your heart that you can’t utter.”James Earl Jones

Now is your chance to utter some of those words in your heart.

How you can help with this very worthy project.

• Spread the word with an announcement post of your own.
• Join in yourself. Visit Mimi’s Blog Blast for Peace Page for full details on taking part and to let her know you are participating.
• Publish your ‘Peace Post’ on 4th June, 2008.
• Read and comment on the Blog Blast for Peace entries.

Inspiration for the Peace Globe images came from a a small blue marble" created in 1920 by Mimi’s grandfather.

Post from: Blogging Sueblimely

Announcing Blog Blast For Peace June 4th 2008

My youngest son has Fragile X Syndrome - the only currently known genetic cause of Autism and the most common known cause of inherited intellectual disability. As a carrier I too have some symptoms although carriers are not affected intellectually.

Post from: Blogging Sueblimely

Blog for Autism Awareness Month

Please keep in mind while you read this post that I believe that my own experiences are mine alone, everyone is different, everyone finds happiness in different forms and different ways. I am not presuming to advise anyone. As Algernon Black said.

“Why not let people differ about their answers to the great mysteries of the Universe? Let each seek one’s own way to the highest, to one’s own sense of supreme loyalty in life, one’s ideal of life. Let each philosophy, each world-view bring forth its truth and beauty to a larger perspective, that people may grow in vision, stature and dedication.“

How do you define happiness?

• Possessing a positive attitude to life and being content with life and who I am.
• Gaining satisfaction in helping others,
• Following achievable, realistic goals
• Continuing to grow and learn without being dissatisfied with where I am today
• Being balanced in mood without any major highs or lows,
• Living up to my own expectations of myself not what I think I should do or be.

On a scale of 1-10, how would you rate your happiness now, versus when you were a child?

Age 1-5/now = 9/9 Age 5+/now 4/9 The missing “1″ is because I have not experienced all there is to experience in life and never will - life is too short, some things I do not want to do and others are not possible.

What do you do on a daily basis that brings you happiness? (and how consistent is the feeling of happiness throughout your day)

When I am happy I do not stop to think about it.When I do I realize that the feelings of happiness are nearly always there - these days.

What brings me happiness -

• The happiness and good spirits of those close to me - bad mood of others can turn my own maybe too easily.
• Spending quality time with my family doing things they and I enjoy. As kids get older I find that harder to do and quality time often just means sitting in front of the box watching same show together.
• Helping others in some way - sounds trite but it is true. If I am honest I help only in ways I choose but then my heart is in it.
• A quiet passion for what I am doing - quiet because I hate the feelings of being overexcited.
• Solitude, not being disturbed in train of thought. I probably need more solitude than most.
• Achieving what I set out to do in a day.
• Doing activities I enjoy - web designing, blogging, being creative in thought and actions, watching favorite DVDs, online communication with friends, occasionally spending time with friends in real life.

What things take away from your happiness? What can be done to lessen their impact or remove them from your life?

• Any hard to solve problems my children or partner or extended family have. Pondering on what will happen to my disabled son in the future. Pondering on what will happen to my disabled son in the future. (repeated for emphasis!) negativity, self criticism , feelings of selfishness, thinking about myself too much. Lessening their impact - work on solutions and don’t dwell on problems, take action, counter negativity with the positive, think of others more, humor, sing “Always look on the bright side of life” Minor irritations such as windows not letting me save images. Solution - tell my partner I am pissed off just after writing a post on happiness and falling into fits of laughter.
• Not taking my “happy pills”, not having enough sleep, repetitive chores (ironing in particular). being disorganized, not focused and being behind with too many things. Solutions - Just Do It or in the case of ironing don’t do and buy clothes that do not crease - avoidance has its place.

What do you plan on doing in the future that will bring you even more happiness?

I am not seeking more happiness, do not know if more even exists, but I do want to continue to grow and improve.:

• Continue learning
• Try to be more selfless
• Helping others more.
• Succeeding in my goals.
• Learn to be more organized and focused.
• Work on the best solutions for my disabled son’s future.
• Travel more overseas
• A ’sea change’ - moving out of the city.

When I started this post I had no intention of adding my own thoughts but just answering the project questions. When I came to think more on the topic I realized that because of my own experiences maybe I am qualified to talk more of happiness (and the opposite) from my own perspective . Having suffered from anxiety and depression, mainly a result of being a carrier of Fragile X Syndrome, for more years than I care to remember, I cried out for solutions to feelings of happiness. I am very very fortunate to have found them, although the quest took a great deal of soul searching, hard work and admitting I could not achieve it all by myself. By not starting on the quest early enough the problems in my life just compounded.

What I have learned.

Happiness

• I have learned that happiness is achievable.
• I should not have expected happiness to come to me, I had to go out and find it.
• Happiness did not take the form I imagined it would.
• What I wanted and what I needed were often not the same.
• I had to let go of self and stubbornness and allow others to guide me, cajole me and, at times, even make me pick myself out of my dark places.
• I left it far too long before I took action.
• I learned eventually to look in the right directions and not let the failures of others deter me.
• Some people are happy in their misery, I had to stop letting their examples convince me that I could not succeed.
• I had to want to be happy and not find benefits in not being so.
• I found that happiness was staring me squarely in the face and I did not need to make any major lifestyle changes. I had to change my attitude.
• I learned that tomorrow always has the potential to be a better day. Yesterday has gone, I don’t waste time on regrets and “what ifs”. Today is the present - savor the gift.
• I can always improve myself further and continue learning all my life. This thought is exciting
• I am an individual with my own unique personality and genetic make up. I do not need to compare myself to anyone else unfavorably and I do not need to focus on my weaknesses but enhance my strengths.
• I am not perfect by any means but no-one is. I accept that I have limitations and can live with and within them and still be happy.

Clinical Depression

• Clinical depression does exist and you cannot always just think your way out of it.
• To get a range of specialist medical help, do not rely on a GP alone.
• If medication is prescribed by a specialist take it and not be stubborn and bloody minded.
• If a medication does not work try and try again until you find one that does. When I found the right one after months of trial and error the result was magical.
• My magical results were just a starting point which gave me the ability to start work on other areas.
• To work as hard as I could to defeat the ‘black dog’, be determined and use every resource available to me.
• Exercise - however much my mind told me not to. Even a daily short walk was of help.
• Adversity can indeed make us stronger.
• To lean on others but to fight hard to stand up by myself.
• Embarrassment, shame and self blame should have no place in my thinking.
• By being open about my own experiences and successes I hope to encourage others to do the same, to show others they are not alone and that there is a way out.

I dedicate this post to Bryn, David, my kids and my sister who never stopped having faith in me, saw positive traits in me, when I was blind to them, and helped me in countless ways. Sometimes thank you just cannot express nearly enough but thank you from the bottom of my heart.

Post from: Blogging Sueblimely

Sueblimely Happy Happiness Writing Project

The answers from each entrant are being posted to his blog each day for 4 weeks of February. Week three is in progress now.

How you can participate in the Happiness Project.

• Alex asks us to follow the project from interview to interview and leave thoughtful, insightful comments.
• Join in yourself by
  1. Answering the project questions in a post on your own blog:
     1. How do you define happiness?
     2. On a scale of 1-10, how would you rate your happiness now, versus when you were a child?
     3. What do you do on a daily basis that brings you happiness? (and how consistent is the feeling of happiness throughout your day)
     4. What things take away from your happiness? What can be done to lessen their impact or remove them from your life?
     5. What do you plan on doing in the future that will bring you even more happiness?
  2. Alex asks us to “Be as genuine as possible when answering the questions”
  3. Link back to and post a link to your post in the comments of the Happiness Project: Series Of Interviews With Top Bloggers: Win Over $650 post in order to let others known about the project, and so that Alex can keep track of who is taking part.

Links

Introduction post and contest rules

Happiness Project Category Archive

Project Entrants

Post from: Blogging Sueblimely

The Happiness Writing Project

My friend, Renny, tells us about the co-founder of LinkedInNorway, Morten W . Morten ,who is trying to raise money for CARE Norway, recently walked a lap of the Oslo City Hall for every 90 Norwegian Krona (NOK) that had been donated; accompanied by Renny. His next challenge will be when he reaches 20,000 NOK and walks 40 laps which will take approximately 6 hours.

Care Norway “places special focus on working alongside poor women because, equipped with the proper resources, women have the power to help entire families and communities escape poverty.”

Please read more about Mortens admirable efforts on Renny’s blog at Care for Women Living in Poverty and if you wish to donate you can do so here on the CARE donation page

Post from: Blogging Sueblimely

CARE For A Walk

I am so heartened to learn that blog readers have rallied round, not only to publicize Richard’s plight but also to give hard cash to help him out.  Richard removed the button once he felt he had enough funds to see him through the next couple of months of air fares and medical bills. I commend him for his honesty.

I was pleased to see Darren Rowse who can reach so many people with his blog, posting about Richard’s challenges. Well done Darren.

Post from: Blogging Sueblimely

Bloggers did Unite to Help