WWW.DSACTIVE.ORG.UK TWITTER: @DSActive FACEBOOK: DSActive dsactive@downs-syndrome.org.uk DSActive Sailing Coach Education Workshop 1
Down’s Syndrome Association • 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 DSActive Sailing Coach Education Workshop 2
Topics to be covered • What is Down’s syndrome • What is the DSActive Programme? • Coaching, Organisation & Communication • Athlete Development DSActive Sailing Coach Education Workshop 3
What do you think when you hear the words… Down’s syndrome DSActive Sailing Coach Education Workshop 4
About Down’s syndrome 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 DSActive Sailing Coach Education Workshop 5
What is Down’s syndrome? • 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%) DSActive Sailing Coach Education Workshop 6
Incidence of Down’s syndrome • 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. DSActive Sailing Coach Education Workshop 7
What can the extra chromosome do? • Cause common physical features • Cause some additional health issues • Result in some level of learning disability DSActive Sailing Coach Education Workshop 8
What can the extra chromosome do? Features at birth • Hypotonia: relaxed muscle tone • Hypermobility: Very flexible joints Physical characteristics • Facial profile • Eye shape • Smaller mouth cavity • Sandal gap • Palmer crease DSActive Sailing Coach Education Workshop 9
Neck Instability • 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 DSActive Sailing Coach Education Workshop 10
Neck Instability DSActive Gymnastics Coach Education 11 Workshop
Possible health conditions • Congenital heart defect • Hypothyroidism • Gastrointestinal • Respiratory • Hearing • Vision • Immune system • Hypotonia – relaxed muscle tone • Hypermobility – very flexible joints • Neck Instability • Hip Instability DSActive Sailing Coach Education Workshop 12
How people with Down’s syndrome see the world • 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 DSActive Sailing Coach Education Workshop 13
Hearing and Vision • 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. 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 / DSActive Sailing Coach Education Workshop 14
What is life like? Development: Same milestones, just sometimes at a slower pace Adulthood: Nobody can accurately predict Support and an inclusive society are crucial indicators of success. DSActive Sailing Coach Education Workshop 15
Myths, Truths and Terminology DSActive Sailing Coach Education Workshop 16
Myth or truth? Task 1 DSActive Sailing Coach Education Workshop 17
Myth or truth? Have a life expectancy of less than 35 years old Are always happy and affectionate Are extremely strong Are only born to older mothers All look the same DSActive Sailing Coach Education Workshop 18
Myths and Truths Myths Truths 1. Have a life expectancy of 60 1. Have a life expectancy of less than 35 years old years old 2. Experience the same range 2. Are always happy and of emotions as anyone affectionate 3. Are likely to be weaker due 3. Are extremely strong to hypotonia 4. Are only born to older 4. Are born to mothers of all mothers ages 5. All look the same 5. Are more likely to look like family than another person with Down’s syndrome DSActive Sailing Coach Education Workshop 19
Terminology Task 2 DSActive Sailing Coach Education Workshop 20
Terminology Suffers from Down’s syndrome A person with Down’s syndrome Mentally disabled Condition A Down’s syndrome person Who has Down’s syndrome The chance of a baby having Down’s syndrome Learning disability Mongul Illness Disease The risk of a baby having A Down’s person Down’s syndrome DSActive Sailing Coach Education Workshop 21
Terminology Correct Incorrect 1. Condition 1. Suffers from Down’s syndrome 2. A Down’s person 2. A person with Down’s syndrome 3. The risk of a baby having Down’s syndrome 3. The chance of a baby having 4. A Down’s syndrome person Down’s syndrome 5. Mentally disabled 4. Learning disability 6. Disease 5. Who has Down’s syndrome 7. Illness 8. Mongul DSActive Sailing Coach Education Workshop 22
Children with Down’s syndrome - 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 ¹ https://www.downs-syndrome.org.uk/for-families-and-carers/growing-up/child-development/ 23 DSActive Sailing Coach Education Workshop
What is the DSActive Programme? DSActive Sailing Coach Education Workshop 24
What we do • 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 DSActive Sailing Coach Education Workshop 25
Why was it started? • 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 DSActive Sailing Coach Education Workshop 26
Research • 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 DSActive Sailing Coach Education Workshop 27
Benefits • 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 .” DSActive Sailing Coach Education Workshop 28
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