VCFS 22q11 Foundation Conference Sydney 2011

2011 Conference & AGM

28th August 2011 , 9.00am

The Children’s Hospital Westmead

Lorimar Dodds Auditorium

                              

AGENDA

8.30am                Registration / Morning Tea

9.00am                Maria Kamper - President Welcome

9.10am                Laurie Taylor – AGSA , What does AGSA do & Sibling workshop

9.30am                Tony J. Simon, Ph.D , UC Davis M.I.N.D Institute  -Integrating Cognition, Emotion & Psychiatry for Treatment in 22q11.2DS Via Video

10.00am              Dr Linda Campbell – Centre for Brain and Mental Health Research University of Newcastle

10.30am              Madeleine Randell (Hons student) - "Attitudes to sexuality, relationships and parenting

10.40am              Emma Gallagher (Prof Doc Clin Psych student)- Depressive symptoms in adolescents with velocardiofacial syndrome as they transition into emerging adulthood"

10.50am              Lisa Phillips (M Clin Psych student) -"How do young women with Velo-cardio-facial syndrome view their personal relationships, sexuality and parenthood?"

11.00am              Brooke Sinderberry - (PhD candidate) "Resilience in children with chronic illness"

11.30am              Neil Nicoll – Behavioural Psychologist -  Social Skills

12.00                             AGM

12.15 pm              Lunch with the Experts

Meredith Wilson – Clinical Genetics Westmead Childrens Hospital

Neil Nicoll – Behavioural Psychologist

3.00pm                Kathy Angkustsiri, M.D., Behavioral Pediatrician, UC Davis M.I.N.D Institute -  Anxiety in Children with 22q11.2DS and its Effect on Functioning Via Video

3.30pm                Maria Kamper – VCFSEF 18^th Scientific conference review

4.00pm                Afternoon Tea

Workshops

9.30am – 3.00pm        Sibling Workshop (children to join craft at conclusion of their workshop)

9.00am – 4.00pm        Craft/Activities Workshop

1/2 Marathon for kids with VCFS

This year we not having a fundraising dinner for VCFS,  however we do have a fantastic guy/ parent of a VCFS child who in the past 3 years has turned his life around from fat couch potato to Iron Man.

He is 3 weeks away from participating in the Port Macquarie ½ Iron Man Marathon. He is running for VCFS and raising funds to  help send the kids on a much needed retreat/camp. This would be the first camp of its kind in Australia for VCFS Kids.

I urge you to read his blog and if you are able donate to the cause,  so all the kids get this fabulous opportunity.

Also remember to send Scott a word of encouragement.

Sometimes it takes special people to go out of their comfort zone to help raise awareness and money. I know there are many people in our communities that do this, but obviously this is one close to our heart. It is people like Scott that make me feel like all my work on the VCFS 22q11 Foundation is worthwhile.

http://slongden.wordpress.com/

You can also visit the VCFS site for details  www.vcfsfa.org.au

Scott in action wearing his VCFS hat.

PS: We are having a VCFS 22q at the Zoo day on May 22 . Just $14 pp  A fun day at the zoo that’s it! see our website for details http://www.vcfsfa.org.au/

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 

IQ DOES NOT DETERMINE SUCCESS

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!!

M

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.