WWW.DSACTIVE.ORG.UK TWITTER: @DSActive FACEBOOK: DSActive - - PowerPoint PPT Presentation

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WWW.DSACTIVE.ORG.UK TWITTER: @DSActive FACEBOOK: DSActive - - PowerPoint PPT Presentation

Aug 12, 2023 331 likes •812 views

WWW.DSACTIVE.ORG.UK TWITTER: @DSActive FACEBOOK: DSActive dsactive@downs-syndrome.org.uk DSActive Sailing Coach Education Workshop 1 Downs Syndrome Association The Downs Syndrome Association (DSA) is the only organization in this

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WWW.DSACTIVE.ORG.UK TWITTER: @DSActive FACEBOOK: DSActive dsactive@downs-syndrome.org.uk

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  • The Down’s Syndrome Association (DSA) is the only organization in this country which

supports people with Down’s syndrome at every stage of life

  • We provide information and support to people with Down’s syndrome, their families, carers

and the professionals who work with them, about all aspects of living with Down’s syndrome from before birth to the end of life

  • Since our formation as a local parents support group in 1970, we have developed into a

highly regarded national charity with over 20,000 members and over 110 regional volunteer support groups

  • We have our National Office in Teddington, regional offices in Exeter and Northern Ireland

and home based staff across the country

  • Other projects run by the DSA include our Information team and our WorkFit programme

Down’s Syndrome Association

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  • What is Down’s syndrome
  • What is the DSActive Programme?
  • Coaching, Organisation & Communication
  • Athlete Development

Topics to be covered

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Down’s syndrome

What do you think when you hear the words…

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A Very Quick History of Down’s syndrome

  • Down’s syndrome was first identified in 1866 by an English doctor

called John Langdon Down.

  • The scientific cause of Down’s syndrome, the presence of an extra

chromosome, was then shown in 1959.

  • It is known as Down’s syndrome in Britain, and Down syndrome in the

rest of the World

About Down’s syndrome

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  • A genetic condition, present from the moment of

conception

  • Very rarely hereditary
  • 47 chromosomes in each cell

Three main types:

  • Trisomy 21 (95%)
  • Translocation (2-3%)
  • Mosaic (1-2%)

What is Down’s syndrome?

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  • There are no known environmental causes of Down’s

syndrome.

  • For every 1,000 babies born, one will have Down’s

syndrome.

  • About 750 babies with Down’s syndrome are born in

the UK each year.

  • Down’s syndrome affects people of all ages, races,

religious and economic situations.

  • There are approximately 40,000 people with Down’s

syndrome living in the UK.

Incidence of Down’s syndrome

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  • Cause common physical features
  • Cause some additional health issues
  • Result in some level of learning disability

What can the extra chromosome do?

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Features at birth

  • Hypotonia: relaxed muscle tone
  • Hypermobility: Very flexible joints

Physical characteristics

  • Facial profile
  • Eye shape
  • Smaller mouth cavity
  • Sandal gap
  • Palmer crease

What can the extra chromosome do?

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  • Atlanto-Axial Instability can cause bruising to

spinal column which can lead to neurological problems

  • Inform parent/carer if you notice any of these

symptoms – stiff neck, unusual head posture, alteration in usual walking gait, deterioration in dexterity

  • Injury rate – very low
  • For more information see our DSA Health Series

#12 www.downs-syndrome.org.uk

Neck Instability

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Neck Instability

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  • Congenital heart defect
  • Hypothyroidism
  • Gastrointestinal
  • Respiratory
  • Hearing
  • Vision
  • Immune system
  • Hypotonia – relaxed muscle tone
  • Hypermobility – very flexible joints
  • Neck Instability
  • Hip Instability

Possible health conditions

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  • 100% of the population of people with Down’s

syndrome have poor visual acuity

  • Visual Acuity is still poor even when a person with

Down’s syndrome is wearing correctly fitted glasses for either long or short sight

How people with Down’s syndrome see the world

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14 DSActive Sailing Coach Education Workshop ¹ https://www.downs-syndrome.org.uk/for-families-and-carers/health-and-well-being/vision/ ² https://library.down-syndrome.org/en-gb/news-update/03/2/hearing-disorders-down-syndrome/

  • Vision:
  • Refractive errors – long and short sight
  • 60% of children will need to wear glasses by the age of 7
  • Near focusing – 76% have poor focusing for near targets and poor detail

version

– Even when they wear glasses for long and short sight – Bifocal studies – encourage parents to consider bifocals

  • Hearing:
  • 60 - 70 % affected by glue ear – hearing can fluctuate daily.
  • Particularly thick/sticky “glue”
  • 20% have sensory-neural loss caused by defects/damage to auditory

nerves.

Hearing and Vision

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Development: Same milestones, just sometimes at a slower pace Adulthood: Nobody can accurately predict Support and an inclusive society are crucial indicators of success.

What is life like?

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Myths, Truths and Terminology

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Task 1 Myth or truth?

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All look the same Are only born to

  • lder mothers

Are extremely strong Are always happy and affectionate Have a life expectancy of less than 35 years old

Myth or truth?

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1. Have a life expectancy of 60 years old 2. Experience the same range

  • f emotions as anyone

3. Are likely to be weaker due to hypotonia 4. Are born to mothers of all ages 5. Are more likely to look like family than another person with Down’s syndrome

Truths

1. Have a life expectancy of less than 35 years old 2. Are always happy and affectionate 3. Are extremely strong 4. Are only born to older mothers 5. All look the same

Myths

Myths and Truths

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Task 2 Terminology

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Condition A person with Down’s syndrome The chance of a baby having Down’s syndrome Learning disability Who has Down’s syndrome Suffers from Down’s syndrome A Down’s person The risk of a baby having Down’s syndrome A Down’s syndrome person Mentally disabled Disease Illness Mongul

Terminology

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  • 1. Suffers from Down’s syndrome
  • 2. A Down’s person
  • 3. The risk of a baby having Down’s

syndrome

  • 4. A Down’s syndrome person
  • 5. Mentally disabled
  • 6. Disease
  • 7. Illness
  • 8. Mongul

Incorrect

1. Condition 2. A person with Down’s syndrome 3. The chance of a baby having Down’s syndrome 4. Learning disability 5. Who has Down’s syndrome

Correct

Terminology

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23 DSActive Sailing Coach Education Workshop ¹ https://www.downs-syndrome.org.uk/for-families-and-carers/growing-up/child-development/

  • Children with Down’s syndrome are achieving much more than they did 25 years
  • ago. Because:
  • Increased acceptance and inclusion
  • Advances in medical care
  • Better understanding of the developmental and educational needs
  • Education quality
  • Children with Down’s syndrome usually make progress in most areas, but at a

slower pace

Children with Down’s syndrome

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What is the DSActive Programme?

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  • Participation

– (Our main aim is to increase the number of people with Down’s syndrome who are being active).

  • Marketing
  • Education
  • Festivals – sailing model
  • Coachability

What we do

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  • DSActive was set up in awareness of the sedentary

lifestyles of many children and adults with Down’s syndrome and the subsequent health problems associated with inactivity, including obesity.

  • People with Down’s syndrome also have a range of

health conditions which can contribute to weight related conditions e.g. slower metabolism, hypothyroidism, hypotonia, hypermobility

Why was it started?

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  • In a study on people with Down’s syndrome 44%

were obese and a further 29% were overweight

  • Only 16% of adults with Down’s syndrome were

meeting the government’s physical activity recommendations

  • Research found that many people with Down’s

syndrome did not enjoy or participate in PAN disability sessions

Research

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  • 76% of parents/carers in a recent study have stated that their loved one was

not very active before they started attending a DSActive session

  • Since joining a DSActive session, 27% have lost weight, 68% have improved

fitness, 78% have improved physical ability and over 91% have improved their social skills.

  • Of the people surveyed in our nationwide consultation, 78% regularly

played sport but only 15% of these were involved in PAN disability sessions.

  • “DSActive is vital, where else can my son play football where his disability

doesn’t disadvantage him.”

  • “DSActive acts as a stepping stone for those whose ability allows them to

progress but also a social/community outlet to engage with others through sport.”

Benefits

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  • Following on from the common health conditions and

current activity levels for people with Down’s syndrome, we decided to launch an app that focuses on nutrition and how to live a healthier all round lifestyle.

  • This app includes meal and shopping planners, step by

step recipes and an activity tracker, so all aspects of a healthy lifestyle can be tracked and encouraged.

  • The app is called Health Swap, and is available on

Android/Apple for free.

Going further – The DSActive Health Swap App

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Coaching, Organisation and Communications

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Barriers for players

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  • Communication
  • Individual needs
  • Physical & cognitive differences
  • Self- confidence

Player Barriers

DS Active Logo

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Communication- Keep instructions short and precise, do not overload with too many words. Use demonstrations. Individual needs- Getting to know each individual and how they learn. Physical & Cognitive Differences- Each player will have different physical differences and thought processes, knowing these and adapting the session is important. Self-confidence- Its important to have positive feedback and be enthusiastic at each session.

Solutions

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Task

Barriers for parents

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  • Travel
  • Cost
  • Knowledge of the sport
  • Confidence

Parent Barriers

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Travel- Lift shares, depending where club is, easy access, parking, public transport. Cost- Grants, club afford to cover, apply for funding. Knowledge of the sport- Providing parents sound information of the sport. Confidence- Assuring parents playing sport is perfectly safe. Get them involved in the session.

Solutions

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Coach Barriers

Task

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  • Knowledge of the condition
  • Communication
  • Confidence

Coach Barriers

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Knowledge of the condition- Attend coach education day run by DSActive. Communication- Keep instructions short and easy. Confidence- Getting to know the players and attending regular sessions.

Solutions

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Coach Considerations

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Antecedents Triggers

Consequences Results

Behaviour

  • Behaviour – to call

something a behaviour you need to be able to see it, count it and describe it

  • Adaptive (positive) and

Maladaptive (challenging) behaviours

  • ABC’s of behaviour

Behaviour

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Behaviour

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Challenges

  • Hearing and vision impairments
  • Delayed motor skills
  • Short-term memory
  • Speech and expressive language
  • Widely varying developmental

delays

Strengths

  • Learning by visual methods
  • Receptive vocabulary
  • Understanding word meanings and

concept

  • Learning by modelling and copying
  • Social skills and engaging with others
  • Structure and routine

The Learning Profile

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  • Keep instructions to a minimum
  • Often thrown by change so avoid progressing to

quickly

  • Speak clearly and ensure participants have eye

contact with you

  • Reduce background noise and distractions
  • Respond well to routine
  • Set up equipment before the session

Effective Sessions

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Crosby Lakeside Adventure – DSActive Festival Total participants – 12, range of ages Key lessons learned – don’t organise a taster day during a hurricane

  • Clear communication
  • Wet weather activities if feasible
  • Marketing – DSA, local, club
  • DSActive Coach Education workshop

Case Study

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WWW.DSACTIVE.ORG.UK TWITTER: @DSActive FACEBOOK: DSActive dsactive@downs-syndrome.org.uk