11th World Down Syndrome Conference

I was privileged to be able to attend the conference in Cape Town from 15-17 August 2012.

Sheri Brynard DSI/DSSA Ambassador & Self Advocate addressed the congress as part of the opening ceremony. Sheri spoke on her life as a girl with Down syndrome. She says that all people have problems; her problem has got a name attached to it. She believes that you do not have to focus on what you do not have but focus on who you are and work hard to make the best of your life. To live a full life one must make a difference in the lives of others. Sheri gives meaning to her life by trying to change people’s perceptions about people with Down syndrome. She is a happy woman with an extra chromosome and she is proud to be who she is, a girl with Down syndrome!

Realizing the rights of persons with intellectual disabilities to equitable inclusive education systems Dr Petra Engelbrecht (UK)

Inclusion, as a key educational policy in various countries, recognizes that all learners require mainstream schools that are responsive to all aspects of learner diversity. Important advances have been made in the implementation of inclusive education. Inclusion should be about belonging, accepting and educating all students, regardless of their differences in ability, culture and language.

New therapeutic measures for eye disease in children and adolescents with Down syndrome Farhad Hafezi

Children and adolescents with Down syndrome have a higher occurrence for progressive keratoconus than the normal population. Keratoconus is a degenerative disease of the cornea that goes along with progressive thinning and bulging of the cornea. This usually starts with puberty. If this is left untreated, the child will experience gradual vision loss, ultimately leading to blindness. Parents and professionals must be aware of the importance of regular eye examinations and what to do if your child is diagnosed with keratokonus.
Treatment: corneal transplant can be done but individuals with Down syndrome rub their eyes extensively and the survival of the transplant is at risk. Corneal collagen crosslinking (CXL) is a new and innovative treatment method that arrests keratoconus. It is proven to be a safe and effective treatment. Objective investigation methods like Scheimpflug imaging must be performed on a routine basis to detect keratoconus.

Sign-to-speech in practical use towards better communication Nina Braadland

Speech and signs must go together. Signing helps the child to communicate before he/she can “talk”. Signing helps the child with social relations. Signing is not “dangerous” it makes language more concrete and visual. Speech is a complicated action, signing does not need that much skill.

I hear – I forget
I see – I remember
I do – I understand

Oral placement therapy: the missing link Monica Purdy

This therapy is used in addition to traditional speech therapy to add a tactile component. Adequate muscle movement, strength and endurance must exist for standard speech clarity to develop. The importance of correct feeding techniques for children with Down syndrome was explained.

iPads for learning and lifestyle Rachel Carr, Amanda Corby

The iPad is an exciting technology that can provide endless opportunities to support learning for people with Down syndrome of all ages. The most exciting aspect of this technology is the move away from traditional ‘disability specific’ devices and equipment towards the use of a mainstream tool in a proactive and creative way.

The impact on the family dynamic of having a sibling with Down syndrome Heidi Webber

Siblings must get adequate information on Down syndrome. They must be kept involved. All children must get attention. Siblings must be encouraged to express their feelings regarding the child with Down syndrome.
The role of siblings:

  • They bring ‘normality’ to the family
  • The make the family less isolated
  • They are fantastic teachers and therapists
  • They are positive role models
  • They are patient, loving and all round play mates.

Strong sound family values, firm boundaries, appropriate discipline attainable, realistic goals and positive, warm and supportive interaction between family members promotes sound family dynamics. Siblings need to trust that parents are ‘in control’ of the situation, this can be reinforced by including them in decision making, discussion and task allocation.

Expanding the boundaries of inclusion for children with intellectual disability – an international perspective Dr. Gordon Porter

A school is a better school for all if it has strategies to be inclusive. Teachers cannot decide who they want to teach. All kids need relationships, peer groups and opportunities.

Early intervention – the key to successful development Gillian Bird

Early intervention as part of normal family life is the key to successful development. Through information, support and activities parents can understand how to use their children’s learning strengths to promote development and target aspects of development that may otherwise exacerbate developmental delays.

Rinske Pouwels