Monday, 10 June 2013

My Beautiful Son

Tonight I sat down to write an open letter to the community of my son's school. I then saw on Twitter a movement to raise awareness about Down syndrome.  So I thought I would share the letter with you all. 

My son LJ, who has Down syndrome, is my youngest and one of the two who have taught me so many things in their own ways. 

I do NOT believe that "special children are born to special people" nor do I subscribe to any of those cliché statements that people make to parents of children with special needs.

In my opinion, those words would be best replaced with action, in the form of inclusion and equality.

This is what the letter looks like:

Open letter and Fact Sheet about L J and Down syndrome

Thank you to all the families at School who read the fact sheet that was sent home in March. The 21st of March is International Down syndrome Awareness Day, raising awareness however, is a full time job.

As L J’s Mum I hope you don’t mind if I share with you some of our personal favourites or some of L J's personal characteristics in the hope that you, your children and the greater community will come to understand L J more and other people who live with Down syndrome. L J, as you may know, attends this school and is in 4th class, Miss P’s class, he also attends the dance class.

If there is ever anything you would like to ask, I invite you to approach me anytime, introduce yourself and get to know us as I am happy to answer any questions you may have. My name is Sandra.

¨                L J copies behaviours – Good or Bad. This can be a great way to teach him new skills both social and academic.  Unfortunately, it can also be a way for him to learn inappropriate social skills and behaviours from other people.
¨                L J learns visually, which is why there are so many picture instructions in the classroom and why many Teachers and SLSOs wear lanyards with pictures around their necks to help instruct L J and other visual learners.
¨                L J likes to pretend and often uses this as a means of communication by acting out things that have happened when he cannot find the words to express himself, or to explain something he is trying to say.
¨                L J loves to dance, which I think is apparent when you see him perform on stage at Assembly.
¨                L J also likes to play soccer, basketball, hand ball and chasing.  L J likes to play with other kids in all types of games.  Sometimes he does not understand the rules and this is when supervision and instruction is needed to help him integrate.
¨                L J likes to be helpful, picking up rubbish, shutting doors, putting dishes in the sink, sometimes before we are even finished eating! LOL
¨                People with Down syndrome are supported academically with different learning styles and adjustments to the curriculum.  Often this type of adjustment is required to integrate children and people with Down syndrome in sporting activities and work placements also and in general play with various groups of children.
¨                Down syndrome is the name of the diagnosis given when an individual is born with three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. The characteristics of Down syndrome are different in each person despite similarities.
¨                Down syndrome is the most common chromosome disorder that we know of. One of every 700-900 babies born worldwide will have Down syndrome. This number has not changed a lot throughout the entire time that statistics have been collected.
Down syndrome is not a new condition. People with Down syndrome have been recorded throughout history.
¨                There are estimated currently to be in excess of 22,000 people living with Down syndrome across Australia.
¨                Down syndrome occurs in people of all races and economic levels.
¨                The possibility of the birth of a child with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are actually born to women under 35 years of age.
¨                People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood Leukaemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
¨                People with Down syndrome attend school, have jobs; participate in decisions that affect them and their future plans while also contributing to society in many positive and meaningful ways.
¨                All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
¨                Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
How often do you need to write to the school your child attends to "explain him" to them?
My Happy Ending is TRUE inclusion and equality for ALL.
My Beautiful Son LJ