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Transcript of Down Syndrome
Down syndrome is a naturally occurring genetic disorder caused by the occurrence of an extra chromosome 21. It is typically characterized by mild to moderate mental impairment, flattened facial appearance, short stature, and weakened muscle tone (hypotonia) in infancy.
photo retrieved from http://www.theatlantic.com/health/archive/2012/04/why-so-many-babies-are-still-being-born-with-down-syndrome/254869/
Down Syndrome occurs at the time of conception when the baby inherits genetic material from each parent.
The only known risk factor for conceiving a child with Down syndrome is associated with women being over the age of 35.
Women can undergo several tests during pregnancy that will reveal if their baby has Down syndrome.
If a mother has had little prenatal care such as ultrasounds and blood tests, Down syndrome can be diagnosed after birth as well.
When a child with Down syndrome is born, there are obvious physical features that would indicate to your doctor that chromosome testing needs to be done.
Halton Down Syndrome Association
The Halton Down Syndrome Association is a volunteer non-profit organization working to improve the quality of life for people with Down syndrome.
Their goal is to see children affected by Down syndrome become responsible, self-sufficient, fully integrated members of the community, who are accepted by their peers, and who are able to lead happy, productive lives.
New Host Family program
Social and Networking events, Advocacy
Membership in the Canadian Down Syndrome Society ($25/year).
Support and Services
Down Syndrome Association of Ontario (DSAO)
The Down Syndrome Association of Ontario (DSAO) is a charitable, non-profit organization, which is composed of local Down Syndrome Associations from across the province.
Local Down Syndrome Associations throughout the province provide direction to the DSAO by sending local representatives to sit on the DSAO Board of Directors.
Through consultation with the local associations, the DSAO Board determines the ways it can be the most helpful to the people of Ontario with Down syndrome and their families.
Their mission is to ensure equity in all aspects of life for persons with Down syndrome in Ontario.
They network,share,educate and communicate information and resources.
Advocate and lobby for opportunities and equity. (e.g. Employment, Education and Medical, Social and Independence etc.)
Create an environment that is inclusive and supports cultural diversity.
Develop relationships with other like minded organizations (Federally & Provincially)
Canadian Down Syndrome Society
The Canadian Down Syndrome Society is a national non-profit organization providing information, advocacy and education about Down syndrome.
They raise awareness and provide information on Down syndrome through the prenatal, early childhood, school years, adulthood, and retirement stages of life.
Up-to-date information through the CDSS website for individuals with Down syndrome, their families, educators, caregivers and professionals.
Toll-free information line: 1-800-883-5608
Resource centre and library
Network of over 50 Down syndrome groups
New Parent Packages containing a wealth of information for new and prospective parents
New Parent Visiting Program, Service Relationships Workshop
Down Syndrome Association of Hamilton www.dsah.ca
This Association is a charitable organization that envisions a society in which each person with Down syndrome is afforded dignity and respect, and is honoured and supported.
They believe that all children with Down syndrome should have the choice of an inclusive education.
The goal is for people with Down syndrome to be able to make real life choices, to work for equal pay, and to have access in adulthood to decent and appropriate homes which they are able to call their own.
Current and accurate information about Down syndrome , Helpful health and medical information, Valuable direction with respect to income tax matters, available subsidies, and benefits, Education and school information, Opportunities for child, parent, and family social networking, Workshops and meetings, Family social events, New baby visits, School visits, and Informed, engaging speakers for your community group, school, or special event.
Issues: Lack of funding for programs, inadequate housing for adults, only the Catholic Board offers inclusive education.
Support for Families
The best kind of support for families who have a child with Down syndrome are support groups and online support groups.
They bring a wide range of families with different backgrounds together who share the same struggles and challenges.
Allow people to obtain first hand advice from others who understand what they are going through.
The best way to get connected with other parents and to find support is by contacting your local Down Syndrome Association.
These associations can also connect you with specialists that can help your family adjust to having a child with Down syndrome.
Some associations offer family workshops that give you strategies and education on family concerns.
The McMaster Children’s Hospital provides “The Down syndrome Care Path”. The Care Path involves having a development pediatrician check the needs of the child and starts from there.
It is crucial that a child with Down syndrome has a good support system around them.
A good support system benefits both the child and their parents.
Another crucial type of support is good health care.
Many children with Down syndrome have health complications beyond the usual childhood illnesses and will require more extensive healthcare and checkups.
It is important that you find doctors that your child is comfortable and gets along with.
This support includes: physiotherapist, speech and language therapist, occupational therapist, cardiologist, audiologist and dietician.
Children with Down syndrome also need support within a childcare or school environment. This can include a specialist teacher, or a personal educational assistant.
In Canada, there are many health supports a child with Down syndrome may need that are covered under Canadian health care.
Children with Down syndrome and their families may need professional involvement as soon as they are born.
Families who express the need for respite may receive funding from the Ministry of Community and Social Services on an annual basis.
A child with a proven disability will receive money from the government. For children with Down syndrome, it is known from birth that they have a disability. Unlike a child with Autism, funding is provided right away.
Canada Child Tax Benefit – The Canada Child Tax Benefit is a tax-free monthly payment made to eligible families to help them with the cost of raising children under age 18.
Also, there are many grants a child with a disability can apply for to obtain extra help. When in college a child with a disability will receive, “The Canada Student Grant for Students with Permanent Disabilities that provides $2,000 each school year (August 1 to July 31).
Potential Funding Options
If an Early Childhood Educator were to have a child in their classroom with Down syndrome, there are some things they would have to consider.
When designing the environment, the ECE should make adaptations in the classroom to make it inclusive.
Advice from the child’s occupational therapist is a great start for creating classroom adaptations that support independence and self-help skills.
While teaching a child with Down syndrome, the ECE should consider speaking directly to the child while using visual supports and having them seated near the front of the classroom.
Independence in small motor self-help skills should be supported through relevant materials. e.g. buttons, coats, daily care routines.
Considerations for ECE's and Self-help Skills
Photo Retrieved from http://vectorblog.org/2013/07/a-major-discovery-in-down-syndrome/
Photo Retrieved from http://www.cbc.ca/strombo/social-issues/hey-canada-its-national-down-syndrome-awareness-week---meet-nicholas-popowich.html
Accessing the curriculum. (2013). Retrieved August 3, 2013, from Down syndrome education online: http://www.down-syndrome.org/information/education/curriculum/?page=3
Canada Student Grants for Students with Permanent Disabilities. (2013, July 22). Retrieved August 3, 2013, from CanLearn: http://www.canlearn.ca/eng/loans_grants/grants/disabilities.shtml
Centre, T. C. (2004, January). A guide for families of children with Down syndrome. Retrieved August 3, 2013, from http://www.hamiltonhealthsciences.ca/documents/Patient%20Education/DownSyndromeBooklet.pdf
Down Syndrome. (2013, July 8). Retrieved July 12, 2013, from Genetics Home Reference: http://ghr.nlm.nih.gov/condition/down-syndrome
Fergus, K. (2009, October 12). How is down syndrome diagnosed? Retrieved from About.com: http://downsyndrome.about.com/od/diagnosisdownsyndrome/a/Diagnosisess.htm
Germain, R. (2013, January). A 'positive' approach to supporting a pupil with Down syndrome. doi:10.3104
Heyn, S.N. (2013). Down syndrome. Retrieved from http://www.onhealth.com/down_syndrome page2.htm#what_are_the_risk_factors_for_conceiving_a_child_with_down_syndrome
Medlen, J. (2008, July 2). Creating support for families of children with Down Syndrome. doi:10.3104
Resources. (2013). Retrieved August 3, 2013, from Down syndrome Association Peterborough: http://downsyndromepeterborough.ca/resources/
Rodriguez, M. (2007). Extra or missing chromosomes. Retrieved from http://genetics.thetech.org/ask/ask234
Staff, M.C. (2011, April 7). Down syndrome. Retrieved from The Mayo Clinic: http://www.mayoclinic.com/health/down-syndrome/DSOO182/DSECTION=tests-and-diagnosis
The Chedoke Child and Family Centre MacMaster Children's Hospital. (2004, January). A Guide for Families of Children with Down Syndrome. Retrieved from Hamilton Health Sciences: http://www.hamiltonhealthsciences.ca/documents/Patient%20Education/DownSyndromeBooklet.pdf