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|
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)|
||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:
To be a self-advocate is not something one has, it is something one learns.
||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:
- 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|
||Learning New skills|
||Making a contribution|
Persons with Down syndrome have better visual short term memory than verbal short term memory.
- 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 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
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.
- 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
- Gross Motor
How to use the information:
- Visual Support
- Target Language
- Support group networks (parent support groups)
||Support the child to succeed|
||Visual Supports (numbers)|
- Face to face interaction
- Listening to sounds and words
- Speech rhythm/hearing
- Say words
- Sorting words
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
- Good boundaries
- Effective communication
- Consistent, reasonable family rules
Individual Resilient attributes:
- Good Judgement
- Social competence
- Communal Behaviour
- The gift to reach out for support
Families tend to ‘dis’ ‘able’ the differently abled person more.
ROLE OF SIBLINGS
Bring normality to
Positive role models
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