Child With Special NeedsPersatuan Sindrom Down Malaysia [PSDM]

13/10/15No. 79, Lingkungan U-Thant ,

55000 Kuala Lumpur ,Malaysia.\

GROUP 8

Introduction To Down’s Syndrome

What about Down’s Syndrome???

Discovery…1866

• John Langdon Down

• Royal Earlswood Asylum for Idiots

1961

• Lancet Medical Journal

FeaturesMental retardation

Epicanthic folds

Flat facial profile

Abundant neck skin

Simian crease

Diseases***

Low immunity

Gap between 1st and 2nd toe

RISK FACTORS• Advancing maternal age35 years old -> 1 in 35040 years old -> 1 in 10045 years old -> 1 in 30• Having a child with Down Syndrome1 in 100• Carriers of the genetic translocation of Down SyndromeBoth men and women

MEDICAL PROBLEMS

• NEWBORN

1)Cardiac defacts (50%)-AVSD ***,VSD,ASD,TOF,PDA2)Gastrointestinal (12%)-Duodenal atresia***,pyloric stenosis,

anorectal malformation, tracheo-oesophageal fistula, Hirshsprung disease.

3)Vision-Congenital cataracts (3%)-Glaucoma4)Hypotonia and joint laxity5)Feeding problems. *usually resolve after a few weeks6)Congenital hypothyroidism (1%)7)Congenital dislocation of the hips

• Infancy and Childhood

1)Delayed developmental milestones2)Mild-moderate intellectual impairment (IQ 35-70)3)Seizure disorder (6%)4)Recurrent respiratory infections5)Hearing loss (>60%) due to secretory otitis media, sensorineural deafness,

or both6)Visual impairment-squint (50%), cataract (3%), nystagmus (35%), glaucoma,

refractive errors (70%)7)Sleep related upper airway obstruction. Often multifactorial8)Leukaemia (relative risk:15 to 20 times).Incidence 1%

• Adolescence and Adulthood

1)Puberty:-Girls menarche is slightly delayed. Fertility presumed.-30-50% chance of having a child with DS-Boys usually interfile due to low testosterone levels2) Increase risk of dementia/Alzheimer disease3)Shorter life expectancy

Prevalence of Down Syndrome

“Persatuan Sindrom Down Malaysia” As A Solution

History of Place

24th September 2000 (Hospital Selayang):76 people consists of a group of concerned parents, medical professionals and some individuals from 7 states met and form a Pro tern committee to form the Association.

11th May 2001:The Association (Persatuan Syndrome Down Malaysia) is successfully registered and established.

Rumah PDSM (Persatuan Syndrome Down Malaysia) is founded.

Objective & VisionVision of [PSDM] is to enhance the quality of individuals with Down Syndrome (DS) and their families, through the perspectives of welfare, health, education

& employment.

Mission of [PSDM] is to integrate, collaborate and build partnerships with the government, corporations and general public to generate awareness and

compassion towards the Down Syndrome community.

Aims and ObjectivesAims:

• Provide information, support and resources to people with Down syndrome, their families, supporters and the professionals who work with them with specific focus on developing countries.

• Raise awareness about Down syndrome and the potential of people with Down syndrome to contribute and live valued lives in the community.

Objectives:

• Disseminate information about all aspects of Down syndrome including prenatal diagnosis, early development, education, medical health, social care, employment, aging and human rights.

• Disseminate information to our national representatives, health, education, social participation and civil society professionals working with or for people with Down syndrome and 2. Capacity build our national representatives in areas including advocacy, self-advocacy, strategy, management, finance, legislation, fundraising, governance, lobbying and rights.

Information ???

What Do PDSM Actually Do ?• This centre currently serves primarily as a weekday day care centre

• Help to cover the parents duties while they are at work (RM 330 per month <- Negotiable) (Operating Hours : Weekdays 9am-5pm)

• Apart from the daily services they host a support group meetings for families living with DS individuals.

• Weekend activities that involves DS children and their families.

Activities Provided

Program Latihan Asas Kerjaya (PLAK)• PLAK is a basic vocational skills training centre started in 2007 in order

to equip children and teenagers with Down Syndrome with skills which help them in finding job in future.• A Career Centre for Syndrome Down was established in 2010 to

expand futher the career training. The goals is to have this special people able to stand on their own feet with minimal support.

Early Intervention Program (EIP)• EIP (Early Intervention Program) is a systematic program of therapy,

exercises and activities designed to address developmental delays that may be experienced by children with Down syndrome or other disabilities.• The goal is to enhance the development of infants and toddlers and

helping families understand and meet the needs of their children.• For children less than 6 years.• Early intervention include physical therapy, speech and language

therapy, and occupational therapy.

Program Stimulasi Bayi (ISP)• Baby with Down Syndrome has poor muscle tone, so

the baby needs to undergo physical therapy to enable them to walk, grip objects and other movements. • There are specific milestones in each of the four areas

of development (gross and fine motor abilities, language skills, social development and self-help skills) that serve as prerequisites for the stages that follow.

Milestone for Down Syndrome

Speech Theraphy• Children and adults with Down Syndrome understand more

language than their expressive language skills. As a result of poor expressive skills,

their understanding can also be underestimated.• Speech production (articulation and phonology) is their weakness.• Learning by: -Visual: Reading and use of computer programmes -Seeing words accompanied with sound and able to read words.

MARCH

20 World Down Syndrome Day & Carnival @ PSDM

2014 (PSDM) Calendar FEBRUARY

21 Family get together @PSDM22 Team Building

JANUARY

3 Himpunan UUM16 Astar Caring Day @ University Malaya

APRIL

9 Smart Kids Fair18 AGM

MAY

23 Family Get Together

AUGUST

6 Menara KL Gala Dinner14 Majlis Buka Puasa

OCTOBER

15 Golf Tournament

NOVEMBER

14 Family Get Together

DECEMBER

3 People With Disabilities Day

Establishing A Wide Connection

Persatuan Sindrom Down Negeri Kedah

414, Lorong Teratai Putih 1Taman Berjaya

05050 Alor Star, Kedah Darul Aman

Persatuan Sindom Down MelakaNo 28, Lorong 1Jalan Bachang Baru 6Taman Bachang Baru,75350 Melaka

Persatuan Sindrom Down Perlis Pusat Nur KasihJln Pegawai

Persatuan Down Syndrome

Pulau PinangCo-28-Gf Kompleks

Masyarakat Penyayang

10460 Jalan Utama, Pulau Pinang

Persatuan Down Syndrome Negeri Johor2c Jalan Yahya Awal,80100 Johor Bahru, Johor

Persatuan Sindrom Down Terengganu1118d, Tingkat 1Bangunan Koperasi Guru,21200 Kuala Terengganu, Terengganu

Pertubuhan Ibu Bapa Kanak-Kanak Keperluan Istimewa

Sarawak (Pibakat)No 9, Jln Rigdeway,

Off Jalan Ong Siang Swee93200 Kuching, Sarawak

Persatuan Down Syndrome Negeri SembilanNo 1261, Jln Teratai I,Taman Teratai 1Taman Marida Senawang70450 Seremban, Negeri Sembilan

No.87 Lingkungan U-Thant,, 55000

Kuala Lumpur

Something To Ponder About

Definition Of Children With Special Needs

• Children with special needs are defined as children who are different from normal children in aspects of mental characteristics , sensory ability , communication skills, social behavior , or physical feature.

• Thus, this difference requires some modifications in the activities of the school or special education services to enable them to grow in capacity maximum. Kirk (1989 )

Educating Children With Special Needs• The Ministry of Education has taken steps to improve the education quality of this group by

providing educational services

• Children with learning disabilities that are under the responsibility of the Ministry of Education includes: • Down syndrome • Mild Autism • Attention Deficit Hyperactivity Disorder (ADHD)• Carebral Palsy • Dyslexia

• Education is given emphasis to the development of the physical, emotional , spiritual and intellectual accordance with the National Education Philosophy . However, the education provided must be commensurate with their abilities ( Mohd Dan , 2007) .

Too Good To Be True For A DS Child

Why??

Hippotherapy & Down Syndrome

Prevention

1⁰ 2⁰ 3⁰

• Health Education • Complete family at young

age• Folic acid supplementation*

• Screening- Ultrasound- Blood test• Diagnostic tests- Chorionic villus sampling- Amniocentesis- DNA analysis

• Physiotherapy• Special care • Follow up with physician*