012 664 8871 dsat@downs.org.za

Petra Congress 2012 Feedback

Healthcare and Children with Down Syndrome:

When raising a child with Down syndrome, one of the concerns is the medical side.
It is difficult to find a good medical practitioner who can treat your child and provide you with medical information specifically related to Down Syndrome.

Doctors should do the following:

 
Screen for problems
 
Provide information on Down Syndrome
 
Diagnose problems
 
Provide treatment
 
Manage Symptoms

Why parents struggle to find good medical practitioners for their child with Down Syndrome:

 
Doctors have too little information and/or experience on Down Syndrome
 
There is little about DS in medical training
 
Good information about DS health issues is not always available
 
Lack of research
 
Lack of good evidence about best treatment and management.
 
It is unlikely that DS will reach the top priority list of the Dept. of Health.(more likely that they will give attention to HIV/AIDS, TB etc.)
The outcome in reality is thus:
 
Problems are missed because doctors does not know what to look for (Thyroid)
 
Diagnostic overshadowing-problems assumed to be ‘just part of DS)
 
You may feel that the doctor is not listening to you
 
You may not bother to go to the doctor because you think they won’t know what to do.
How to change this:
     
Create greater awareness
     
Implement programmes (identifying problems)
     
More research
     
Support professionals
     
Give doctors the information – but in the right way
     
Work in Relationship with doctors

Young persons with Down Syndrome and Relationships:

Young persons with a disability have the same needs as any other person. They also want a partner, someone to go out with and have a relationship with.

What stops them from having a relationship is that they do not know what to talk about, not having information about sex and not being married.

According to the young person with Down syndrome, no one is supporting them to have a relationship.

Parents said that in order for the relationship to work between 2 young persons with an intellectual impairment, the values of both parents need to be the same.

The young persons need to get information about safe sex, emotions, how to treat the other person, how to handle conflict situations etc. from the parents.

Information on relationships:

www.dubbeltutsatt.se

www.changepeople.co.uk

Self-Advocacy:

To be a self-advocate is not something one has, it is something one learns.

It means:
 
To look after yourself or those you are fond of
 
To take a stand on life and the opportunities are met by
 
To have a desire to transform or change

The following applies to a self-advocate:

  • What do I want with my life
  • What does my family want with their lives
  • How can different plans work together
  • Do we support each other
  • How can our plans get support from others

Self-Advocacy through the Voice of Canadians: The VATTA project:

The VATTA:

  • Is a group of 6 young adults who advocate on behalf of Canadians with Down Syndrome.

E.g. When someone enquires about pre-natal screening the young person with Down syndrome will go out and give the information and support.

  • Provide the Canadian Down Syndrome Society (CDSS) Board of Directors with insight
  • Help CDSS focus their efforts
  • Demonstrate the capabilities of people with DS
  • Educate and promote awareness
  • Establish connections with other advocacy groups
  • Address questions raised by CDSS

Visual Support in the Workplace:

The importance of work for a person with Down Syndrome:

 
Give them identity
 
Improved Self-esteem
 
Improved Confidence
 
Learning New skills
 
Social Connections
 
Making a contribution

Persons with Down syndrome have better visual short term memory than verbal short term memory.

Visual supports:

  • Photo’s, symbols, drawings & images
  • Use in conjunction with verbal information.

Why does it work:

  • It strengthens visual memory
  • Allows for longer processing time
  • Breaks down messages

In the workplace:

  • Reduces anxiety
  • Encourage independence
  • Increases Confidence
  • Helps with self-management
  • Encourages young person to think about work methods

No one package fits all persons

Always involve the young person with DS, ask them what they think they can help to make it work.

Time Tables:

  • Time tables help to support memory
  • Increases independence
  • Helps the person stay on the task
  • Supports transition to the next task
  • Support consistency but also prepare for change in routine

Instructions and Procedures:

  • Break down tasks
  • Increases independence
  • Increases productivity
  • Ensures task is being completed effectively

If one approach does not work, try something different,do not give up.

Ask the employer for feedback

Supported Employment:

Why it is difficult for parent to place their child in the open labour market:

  • Parents feel the work is demeaning
  • They often have unrealistic expectations
  • Fear that their child will not cope
  • Ongoing financial burden
  • High anxiety levels

Lessons learned by parents:

  • Employment can work
  • Increased self-esteem and self-confidence
  • Remuneration benefits help.

Early intervention:

  • Observe your Child’s behavior
  • Respond immediately
  • Imitate child’s behavior
  • Repeat activities
  • Follow your child’s focus attention

Strengths of Down Syndrome

  • Visual processing
  • Receptive language
  • Non-verbal social function

Weakness

  • Gross Motor

How to use the information:

  • Copying
  • Visual Support
  • Target Language
  • Support group networks (parent support groups)
 
Support the child to succeed
 
Keep Trying
 
Motivation
 
Visual Supports (numbers)

Processing speech:

  • Face to face interaction
  • Listening to sounds and words
  • Speech rhythm/hearing

Spoken language

  • Say words
  • Syllable
  • Sorting words
Language
Through play:
  Ball,
Banana
 

www.ncb.org.uk/early-support/resources/publications

Impact on Family Dynamics of having a sibling with Down Syndrome:

Family means a party of travellers

Family resilience factors

  • Positive family relationships
  • Ability to laugh and have fun
  • Close family
  • Confidence and optimism
  • Flexibility
  • Good boundaries
  • Effective communication
  • Consistent, reasonable family rules

Individual Resilient attributes:

  • Good Judgement
  • Social competence
  • Self-agency
  • Intelligence
  • Communal Behaviour
  • Friendliness
  • Helpfullness
  • The gift to reach out for support

Families tend to ‘dis’ ‘able’ the differently abled person more.

ROLE OF SIBLINGS

 Family less
isolated

 Bring normality to
family  experiencing
‘abnormal’ events

 Positive role models
 (mostly)

 Patient, Loving&
all-round awesome
playmates.

 Fantastic teachers
and  therapists
(siblings play and
teach)

Which child do you love the most???

“You love the child who needs you at that stage the most”

How do we do this:

  • Adequatesibling preparation
  • Keep siblings informed and involved
  • Realistic expectations
  • Encourage siblings to express feelings
  • Alone time for siblings
  • Give siblings their space
  • Positive awareness

The sibling should not become the parent!

Thanking you for the opportunity to attend the Congress.

Petra Le Roux