The VCFS and 22q11 Foundation supports families and persons affected by VCFS or Deletion 22q11.

THe VCFS 22q11 Foundation

Velo-cardio-facial syndrome (VCFS) is a genetic syndrome. It is the result of a submicroscopic deletion on the long arm of Chromosome 22 in the “q11” region- deletion 22q11. VCFS affects approx. 1 in 2000 - 3000 persons making it the second most prevalent genetic syndrome after Down syndrome VCFS is the most common genetic syndrome associated with cleft palates VCFS is the second most common genetic syndrome associated with congenital heart defects 99% of the VCFS population will have a learning difficulty or disability 30% of the VCFS population will develop a mental illness VCFS has more than 180 annomolies associated with it The name velo cardio facial syndrome comes from the Latin words "velum" meaning palate, "cardio" meaning heart and "facies" having to do with the face.

Sunday, November 28, 2010

VCFS Supports World Rare Disease Day

VCFS 22q11 Foundation 
Proudly presents

World Rare Disease Day 
28th February 2011

Cafe Vivo

388 George Street, Sydney NSW 

6.30pm to 8.30pm
$35 pp
(only 70 tickets available)
Contact: president@vcfsfa.org.au 

Wednesday, November 24, 2010

Individual Education Plans (IEP)

This morning my daughter’s school called me to a meeting about her IEP for next year. Given that we are moving to a new school as we are moving away from our hometown, I was very grateful to the special ed teacher and class teacher for this. 
Every child with special requirements should be given an IEP and should be entitled to one, no matter where you live, what school you go to or how much money you have. 

So What is an IEP ??
The Individual Education  Plan (IEP) is a written plan developed by the parents and the schools special education team that specifies the students academic goals and the method to obtain these goals. There should also be a section relating to social skill and objectives.
IEP writing is one of the most important responsibilities of a special education teacher.
Understanding the sections will help you write with more confidence.

General Information
The first part of the IEP is general information. You need to be sure that phone numbers and addresses are correct. Also prepare the signature page which should include the student if the student is 16 or older.   When a student turns 16, they need to be part of transition planning, which will be part of the IEP.

Special Consideration 
This section should discuss the specific challenges the child faces eg: communication, behaviour etc..Any special requirements the child has should be noted in this section. 

Present Achievement Levels
Present levels are one of the most important parts of the IEP, and should be attended to first. This includes some standardised evaluations and tests to determine the child’s current achievement levels.

This section ends with strengths and needs. These can be taken directly from the Evaluation Report , but each need must be addressed either in the educational goals or the specially designed instruction.

The next section is for special services a child will receive, such as speech therapy, occupational therapy or adaptive physical education and includes the frequency and duration of services.
The last section includes supports the teacher will get, which may include training, consultations with the psychologist or behavior specialist, or in the case of the general Ed teacher, regular meetings with the special education teacher. 

Sunday, November 21, 2010

Stress worse than ever!!

Does it feel like your “stress temperature” has gone up around ten degrees the last few years?  According to the American Psychological Association’s Stress in America survey, your kids are feeling it too.  The new survey details the impact of different types of stress on the family, and the news raises some serious concerns about how children are coping with it.  According to the survey, 17 percent of children who say their parent is always stressed are likely to feel high levels of stress themselves compared to two percent of kids who report their parents are never stressed.  This means that children are not only aware of the family stress, it is increasing their levels of stress as well.  The ill-effects of stress on children’s health is a serious problem, and we know from research that experiencing family stress creates unhealthier kids.  The APA survey provides further data that suggests children and teens likely often turn to unhealthy eating or passive, inactive behavior to cope with stress.  TV watching and listening to music are higher in stressed tweens and kids, perhaps contributing to the higher levels of pediatric obesity measured over the past five years.
Far from being “character building” for children, stress places children in a situation in which they are worried but have little or no power to correct the situation.  Children are perceptive, and quickly pick up on parents’ frustration, more frequent family arguments, and negative changes in the emotional tone of the family.  What happens when they feel this tension but can’t do anything about it?  Children translate these feelings into bad habits and behaviors.  The APA survey found that parents typically underestimate the amount of impact their levels of stress have on children in the family, which is easy to justify when parents are worried about a job or financial situation. 
Given the fact that parents have real worries and that they can’t just make their own stress disappear because of the kids, what can be done to help kids with the situation?
  • Watch those negative offhand comments – Its natural to express the stress through comments like “We’re stuck” and “why does it always happen just when we are getting back on our feet,” but kids take these comments literally.  Try to replace these comments with suggestions for action instead, like “we’ve really got to figure out a plan to deal with our bills.”
  • Take a walk instead of turning on the electronics – Role model good stress management by asking the kids to take a walk around the block or playing catch in the backyard.  Even a small amount of physical activity can help reduce stress.
  • Teach the kids to be solution-focused instead of worry-paralyzed – Ask kids about their own levels of stress and worry, and help them understand how having a plan can make the situation better. 
  • Make ‘em laugh – Laughter goes a long way in busting through tension and worry.  Try a family joke night or funny mime competition to keep things funny and active at the same time.

Wednesday, November 17, 2010

Cards on the table

See the article below about the Christmas cards that portion of sales go to charity. 

I wanted to point out that 100% of profits from the sales of the VCFS 22q11 Christmas cards goes directly to the VCFS 22q11 Foundation.  I would encourage you all to buy our cards and know that 100% goes to us!!!!! www.vcfsfa.org.au 

Unicef Christmas card

CHOICE looked into Christmas cards that give a portion of the sales to charity, and found even savvy consumers can misunderstand how much of their dollar goes to charity. Almost half the respondents in our online charity Christmas card survey expected that between 20-50% of the cost of a card would be donated to charity, and almost a third put that figure at 51-70%. With those figures in mind, it may surprise you to learn the actual percentage donated by many card providers.
We found several charity Christmas card providers donating as little as 10% of the wholesale price of a card – which really amounts to small change. On the upside, charity cards are still a way to make a small contribution with an item you are likely to purchase at some point anyway.
  • Flaming Rhino Design , one of the smaller greeting card providers we surveyed, donates 10% of the wholesale price. It has raised in excess of $410,000 for its chosen charity, The Salvation Army, since 1997 when the program began.
  • Hallmark , Australia’s largest greeting card provider, contributes 10% of the wholesale cost of nominated card box sets to its chosen charity, the National Breast Cancer Foundation (NBCF) at both Christmas time and Mother's Day. This has resulted in donations totalling over $1 million since the program began in 2002.
  • Of course, there are examples of card providers donating more than 10% too. Charity Connections is a small outfit based in Adelaide’s CBD that donates a whopping 79% of all proceeds to the 45 different charities it supports. The different charities and cards associated with them are listed on the website so you can choose who your money goes to.
However, probably the easiest way to ensure the highest amount of your money goes to the cause is to buy direct from the charity. Most now have websites where you can order online. One great example we found was the Cards4Kids program, which is run purely to assist Barnardos, a charity dedicated to helping children facing abuse or neglect. You can buy Christmas cards and other festive items online at Oxfam and Unicef. In these cases, all profits are delivered to the charity organisations. At Oxfam's website you can actually custom design your own printable cards or e-card, a personalised touch which is also a bonus for the environment.
While not strictly a charity, Mouth and Foot Painting Artists has been operating since 1956, allowing its members to completely support themselves through sales of their paintings, reproduced as cards and other items. Through illness, accident or birth defect, members have been deprived of the use of their hands, but taught themselves to paint with their feet or mouth. As the group is at pains to emphasise in its literature, "AMFPA is run by mouth and foot painting artists who want - not pity - but a chance to earn a living".

Other reasons to buy charity cards

Of course, buying a charity Christmas card provides more than just the sum of your donation. While the fundraising is an important element to charity Christmas cards, many organisations also see it as a way to raise awareness of a cause and a charity’s brand.

“Offering cards is just one way to engage people in our work at Christmas and spread brand awareness and goodwill,” says Barnardos Marketing Director, Jill Atherton. "The most effective way to help the children we care for is still to give a direct donation. That said, Cards4Kids, the social enterprise that produces and sells our cards, provides a valuable income stream and we are very glad to provide our supporters with the opportunity to involve us in their Christmas celebrations.” 

Monday, November 15, 2010

Missed diagnosis: 22q11.2 deletion syndrome

July 1, 2010

(PhysOrg.com) -- An article published in the June issue of the journalNature Reviews: Neuroscience provides one of the first comprehensive overviews of the genetic, neural and cognitive bases of a frequently undiagnosed congenital disorder with an array of complex genetic, medical, neurological, behavioral and psychiatric features: the often baffling chromosome 22q11.2 deletion syndrome (22q11.2DS).
Those with 22q11.2DS can display a panoply of congenital heart and oral/palatal/, other medical problems,  and , so it often is mistaken for other conditions, said Tony Simon, a professor of psychiatry and behavioral sciences at the UC Davis MIND Institute and an author of the article.
"There is such a huge variation in the manifestation of 22q11.2DS that few physicians recognize it for what it is," Simon said. "But it's important that doctors be more aware of it so children can receive early identification services and management for each of the problems that may develop."
The condition's name describes a location on the 22nd chromosome, where a tiny bit of  is missing: a microdeletion. The submicroscopic loss of DNA affects expression of some 35 to 60 genes. While it can be inherited, the mutation usually arises spontaneously. It is diagnosed using a test called fluorescence in situ hybridization.
Among the first to encounter children with 22q11.2DS may be pediatric cardiologists, because many children with the disorder are born with serious heart defects that require surgery at birth. Among these is tetralogy of Fallot, which occurs in nearly one quarter of people with 22q11.2DS. The defect, a complex of four heart malformations, is the most common cause of "blue baby" syndrome.
Abnormalities in the development of the palate and surrounding throat structures also are common in the disorder, as are facial abnormalities, learning disabilities, low calcium, thyroid and  levels, low muscle-tone and short stature. Immune-system abnormalities can make it dangerous for many affected children to receive certain live vaccinations. 

Sunday, November 14, 2010

Investing in Our Teachers, Investing in Our Economy

Grattan Institute-  Investing in Our Teachers, Investing in Our Economy

- A Grattan Report

Improving teacher effectiveness would have a greater impact on
economic growth than any other reform before Australian
governments. The improvement in student learning could lift
Australian students to the top of international performance tables.
An increase in teacher effectiveness of 10% would lift Australia’s
education systems into the highest performing group of countries
in the world. In the longer-term, this improves the productivity of
Australian workers, which increases long-run economic growth by
$90 billion by 2050, making Australians 12% richer by the turn of
the century. This is in addition to the other benefits to individual
wellbeing and society of better education.
Improving teacher effectiveness also has substantial economic
benefits for individuals. Young people who stay in school and
invest in further education can expect to earn an additional 8-10%
per year for each additional year of education they undertake.
Increasing teacher effectiveness is thus perhaps the single most
profound economic transformation open to Australian
governments. Improvements of this magnitude are achievable.
Each grade needs to incorporate an extra 5% of a year’s worth of
learning for our students to be amongst the best in the world.
However, education policy priorities would need to change. Past
investments to improve school education have not yielded results.
Policies reducing class sizes have driven much of the increase in
education expenditure in Australia over the last decades. These
policies have been politically popular and are intuitively appealing.
Advocates argue that a teacher should be able to offer more to
fewer students.
The evidence does not support these policies. The vast majority
of studies around the world have shown that class size reductions
do not significantly improve schooling and student outcomes. For
example, recent evidence from Florida that emphasised class size
reductions in the early years of education shows that policies
reducing average class size by about 2.5-3 students had no
impact on improved schooling, but cost over $1 million dollars per
school per year.
The evidence shows that improving teacher effectiveness is the
best method of improving student performance. It is more
important for a student to have an effective teacher than to be in a
class with a few less students. Teacher effectiveness has a
greater impact on student performance than any other
government school education reform. Initiatives to improve
teacher effectiveness not only help students more, they cost much
This report does not point the finger at teachers. On the contrary,
this report argues for improved investments in teacher
effectiveness. This will have the greatest benefit for our students
and is the most effective method of making Australia’s school
education systems the best in the world.

Wednesday, November 10, 2010

World Rare Disease Day

I am trying to organise a lunch on World Rare Disease Day  on the 28th Feb 2011.

I need the following so if you can help please do

  • Location
  • goody bags
  • lucky door prizes
  • vouchers
  • people to attend
I would like to do it somewhere in Sydney preferable the city, north shore or northern beaches.



Monday, November 8, 2010

Heres what I Can Do - I can be happy and successful!

So you have a child that is challenged and needs special assistance with many different things in life (I try not to use the term disability)

Sometimes parents, teachers, carers and peers miss what is most important to these kids.  I believe it’s time to look beyond what our children's weaknesses are and focus some attention on WHAT THEY CAN DO! 

Nurture this and praise them for their efforts. If we do this I believe our kids confidence will grow and then they may be inclined to climb other mountains and take on other challenges that they would not normally try. 

We could spend endless hours trying to teach our kids the things they find extremely difficult and get very disappointed with the results. Would it not be a great thing to see them achieve in areas of strength and build up that self esteem!!!! 

I do not proclaim to have an special qualifications when it comes to this other than being a mother of 3 gorgeous kids, one who is learning challenged. 

Unfortunately in our society we are constantly bombarded with things about IQ and tonight’s show on channel 9 is no exception. Rather than making families participate and find out who has a higher IQ, why don't we look at the achievements of everyone. 

I am going to use a phrase I have been using for months now 


Accept life is unfair, some people are born with disabilities or are challenged and we need to accept this fact . . Remember Newton could have complained about the Apple falling down the tree could hit his head...but instead he identified the Law of Gravitation and is now known as The Father of Physics,

Accept Failure, Understand behind every Success there is a Failure.

I am not saying don’t try to teach them things they find difficult or hard, I am saying give them a chance to be good or successful at something they can do, build self esteem and confidence and we may find that the things they can’t do may become things they can do because they may not be afraid to try them!!


Advocate for your child

Being a parent of a child that has special needs or is challenged is daunting. Sometimes we find ourselves faced with the reality that our life is not what we expected. Words and labels are placed on our kids, we are judged and we feel lost sometimes. Be positive and accept this as a challenge to ourselves, be your child's advocate.

Sunday, November 7, 2010

Time is our gift

Today I listened to the webinar from Happy Child with Michael Grose. I must say something that struck a chord with me was the constant promotion of ME TIME.

This is so important that I feel I need to blog about it. 

Spending time for yourself or yourself and your partner should be a priority even before the kids at times. Remembering that this time has to be quality not just a rush job to get your hair done or nails painted before taxiing the kids from one event to the next. It should be dedicated time to "sit back and smell the roses" enjoying yourself. 

We should make sure that this time is purely our own, not limited to 30 minutes between serving our kids. Kids need to learn that parents and carers need a rest sometimes, which does not include being constantly hassled for this or that. Kids have to learn to be independent and do things for themselves sometimes. 

Never feel guilty about getting a sitter to care for your kids. It is actually a good thing to do. If you are constantly working for your kids you are going to burn out. Give yourself and your relationship with your partner the respect it deserves. We did not have children so we could forget about ourselves or our partner. We have them to share in the joy of our life. Life will change after we have kids but it does not have to end. 

Put yourself 1st sometimes and see how things change. If you are happy and content then you may find your kids and family life will be a reflection of you. 


Thursday, November 4, 2010

Parents - It's Okay to Let Your Children Fail Sometimes

I found this blog on the Happy Child website. I think it is something we should all learn and understand. Thanks Happy Child for sharing this insight.

By Arun Abey - 30th October 2010

As Harvard’s Positive Psychology Lecturer and author of best-selling book Happier , Tal Ben Shahar has spent his life studying what makes people happy. And his mantra to his students is “learn to fail, or fail to learn.” 
This can be applied to parenting too. Letting our children experience minor failures, without rushing in to save them, helps them learn key skills that are essential to deal with the inevitable disappointments of everyday life.

Of course when it comes to our children, this can be easier said than done. How do we watch as our children make wrong turns, wander aimlessly or head off down streets we already know are dead ends, without warning them? How can we sit back as they under-prepare for exams, make inadequate effort in homework, or choose not to practice for sporting or music events even when we know the disappointing outcome that will result?

We do it by knowing it will make them happy – not fleetingly, but over the course of their lives. By letting our children struggle, just a little, we help them learn two of the key skills to lifelong fulfilment – developing resilience and finding flow.

Resilience is the ability to endure harsh conditions, great setbacks and the deep sadness that may come, for example, from the death of a loved one, and eventually return to recapture your joie de vivre.

During their lives, as much as we hate to believe it, our children are inevitably going to experience adversity and hardship, which is why to ensure they thrive, we must help them cultivate resilience by letting them experience minor failures.

When our children get a detention for not doing their homework, fail a test or are left off a school sports team, they are able to see how their actions impact directly on outcomes helping them learn problem-solving skills, persistence and inner-strength.

Flow is a state of total engagement where time passes unnoticed. It occurs when our highest skills just meet our highest challenges and research shows finding it is one of the keys to a happy life.

But in order for our children to find flow we must allow them to be challenged, not just remain in their comfort zones. After all we don’t find flow when we are bored...

Tal Ben Shahar calls this place 'outside the comfort zone but before the panic zone, the stretch zone'. This is a learning space that requires children to exercise courage and tolerate a certain amount of fear. It is where flow, optimal functioning and most learning occur.
Failure as opportunity

As parents it’s important to let children know that any failure on their part is normal, expected and even welcome, as it means they are learning and stretching themselves.

Some of the most successful people in the world see their failures, not as failures but as part of the journey to success. Before inventing the light bulb Thomas Edison made more than 1,000 failed attempts which he refused to call failures.

I have not failed 1,000 times” he said. “I have successfully found 1,000 ways not to make a light bulb.”

Tuesday, November 2, 2010

Oprah Sydney Meet Up gives VCFS exposure

On Monday night i had the great chance of giving VCFS exposure to almost 100 people who came together to discuss education in Australia. Thanks to Nancy Georges the organiser i was able to talk about VCFS and discuss the issues facing our kids at school. Oprah Sydney Meetup

With this new networking group I think the VCFS word will spread like wildfire.  On top of this our TV commercial featuring Lisa Wilkinson is still being aired on Channel 9 WOW!!! Great Work