Have you seen this great website DS-Health with all things health related to Down Syndrome. Written by at Paediatrician and father of a child with DS, it offers a range of essays reviewing research about topics such as facts, health guidelines, nutrition and common health issues found in people with DS.
Hope you find it useful.
I would like to say thanks to all the people (friends, family, Lifestart) who have allowed Kayla to be who she is without judgment.
I always loved the saying ‘Don’t DISmyABILITY’ used as a campaign by the NSW Department of Ageing, Disability and Home Care (DADHC) and here is why.
Most people with a disability including Down Syndrome have to put up with stigmas and often lowered expectations. Things are getting better – swings for wheelchairs at some parks; buses with ramps; nippers, sailing and surfing programs for the disabled; associations meeting needs and allowing places for voices to be heard and a place in regular schools and workplaces. I encourage you to notice differences and individuality and don’t make generalised comments about your perceptions of people who are not like you.
I wish I could change the name Down Syndrome (DS) which was named after a man named Langdon Down first described similar traits in children in 1886. It is called a syndrome as there are similar characteristics in people with an extra chromosome 21, but mainly people with DS will take after their parents and have attitudes of their own shaped by the people and community around them. If only his name was something more positive perhaps the stigma surrounding Down Syndrome wouldn’t be so bad! The NSW DS association has a club for young adults called the “Up Club” and I love the positive energy that evokes.
Everyone I know who has a child with DS is from a loving family, with support from friends and family and the overall community around them. Nobody asked for or expected it to happen to them and asking why didn’t you have testing done in your pregnancy is like saying the wonderful people I know affected by DS shouldn’t be here. Perhaps when someone with Down Syndrome comes up to you or you pass them in the street don’t presume they can’t understand you and can’t communicate, just have a normal chat.
I want Kayla and our family to be spokespeople to everyone we meet – that people with a disability can lead full lives, go to normal schools, work alongside you and be your friend. Don’t judge people and try to embrace the differences we all have that make us unique and you can help make this world a better place.
Please note that the offer will run untill the 14th of May 2012.
Where better to find a great deal on books, games and music for your child or another loved one this year than the Book Depository with free worldwide postage! Find fabulously priced books, movies, toys and more at The Book Depository. Search special needs, school readiness or latest releases for great recommendations or just get a new movie for the kids to keep them busy over the holidays or find a good read for your self at great prices!
I found these very useful and practical articles from the Canadian Down Syndrome Society which I wanted to share with you. They are fabulously written to help give a parent understanding of some of the behaviours we often see in kids with DS.Hope you can get some good tips too!
http://www.cdss.ca/blog/information/general-parent-information/
Hope you can get some practical tips!
These books are highly recommended from the Topics in Down Syndrome range. For sale only a click away through Book Depository at a great price.
Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals
Early Communication Skills for Children with Down Syndrome: A Guide for Parents and Professional
Teaching Reading to Children with Down Syndrome: A Guide for Parents and Teachers
The Better Start for Children with Disability initiative provides funding for early intervention services.
Children are eligible for the Better Start program if diagnosed with one of the following disabilities:
Each disability included in the Better Start program is subject to an eligibility threshold. These thresholds have been determined by the Department of Families, Housing, Community Services and Indigenous Affairs.
Children with an eligible diagnosis must register for Better Start before they turn 6 years old. A child will have until they turn 7 to access funding.
Children registered with Better Start can access up to $12,000 (maximum $6,000 per year) to pay for early intervention services. These services include:
Families living in outer regional or remote areas may be eligible for an additional one-off payment of $2,000.
This payment is to assist with additional expenses associated with accessing services.
For more information about how to register your child with Better Start call your local Carers Association on 1800 242 636.
It is said that Music and Sound Therapy helps communication and expressions of feelings plus it improves physical and emotional connection with the body. Music therapy has been documented to help adults with dementia, children with autism, Down syndrome and those undergoing rehabilitation. In fact it seems music therapy may help us all.
Down Syndrome
I have never actually met a person with Down syndrome who doesn’t respond to music and who doesn’t like to dance. As often there is associated low muscle tone, hearing impairment and affected sensory development, music therapy is one way that all these senses can be stimulated and would be a positive form of expression. Many therapists and group sessions are set up for people with an intellectual disability and some infant classes include signing songs too. Consider finding a group in your local area.
From our personal view, when Kayla was born with Down syndrome we didn’t know what to expect but she has grown into quite the little performing star. Since the beginning I can remember singing to her and her cooing away with me. Then when she could move, those dance moves really started to shine and continue to develop today with her air guitar motions coming along well. We use songs and movement to music (from Incy Wincy to programs such as Sing with Me) as a tool to help her talk, prompt initiation and improve her memory as to the sequence of actions and sounds which she has responded extremely well to. Especially when Kayla was hospitalised and music therapists from the Nordhoff-Robbins school in Sydney came into our lives bringing fun, guitars, drums and singing – we saw her flourish when they came in the room and she is even featured on their website where you can really see the pleasure!
Related sites:
Australian Music Therapy Association Inc
Down syndrome is caused by an extra copy of chromosome 21 in all or some cells. It is a chromosomal accident, not known to be caused by anything the parents may have done before or during pregnancy. Cognitive and developmental delays range from individual to individual and early intervention can play a large part in improving the overall development of children. First and foremost people with Down Syndrome are individuals and have their own personalities and resemble their parents over their disability and like to be treated as such.