Posts filed under 'Down Syndrome'

New Down Syndrome Association Web Site

Jill O’Connor (from the Down Syndrome Association of NSW) visited us today with her husband Brendan and son Declan. I’m working with Jill to set up the new web site for the DSA.

December 31st, 2002

Footings Poured

I’ve added a couple of interesting links to the Down syndrome links page. One is a report into inclusion in NSW schools, and the other is the transcript of an SBS show about inclusion in mainstream schools.

The concretors poured the footings for the back room today, and the builders removed the brick from most of the walls across the back of the house. They’ve also begun digging holes out the front for the new balcony poles.

The new footings have just been poured!

October 16th, 2002

DSA NSW Conference 2002

Megan and I attended the Down Syndrome Association of NSW conference up at Collaroy this weekend. They had some great speakers talking about things like Makaton sign language, communication and social skills, legal issues, etc. It was also nice just to meet and talk with other parents.

October 13th, 2002

Grace In DSA Newsletter

Grace’s photo was published in the Winter edition of the Down Syndrome Association of NSW newsletter, along with an introduction letter from Megan and I. They put the photos from each newsletter online (hers is the bottom left picture). A bigger version of the same photo is available on this site.

August 3rd, 2002

Disability Support Pension Reform

In their 2002-2003 Federal Budget, the federal Government announced a reform of the eligibility criteria for the Disability Support Pension. These reforms will have significant impact on working adults with Down syndrome, lowering their income and benefits, and thus affecting their ability to lead an independent life.

Please read this article about how one individual, Lisa McKerlie, stands to lose out. Have a think about the impact these changes will make on her life.

If you agree that the changes seem unjust, please contact your local MP.�You can look them up here:

For further information, see the Down Syndrome Association of NSW web page and media release. Even if you just send off a quick email to your local MP pointing them to these web sites, you’ll be helping a group of people who really need it.

For those in the Gilmore electorate (from Kiama down to Durras North), here is Joanna Gash’s email address for your convenience: Joanna.Gash.MP@.aph.gov.au

May 25th, 2002

Down Syndrome Links

I’m trying to collect more sites about Down syndrome. If you have any suggestions, please email me.

Articles

Welcome to Holland – An article about what it feels like to find out your child has Down Syndrome, and a fresh way to look at the positive side of life.
Stories By Linda Moran – Essays by a freelance writer who has a son with Down syndrome.


Australian Sites

Down Syndrome NSW (DSANSW) – The support organisation we belong to.
Vinson Report of the Public Enquiry into Public Education – A report into inclusion in schools in NSW.
Disabilities and the Classroom – The transcript of a show that was screened on SBS in October 2002 about inclusion of kids with disabilities in mainstream schools.


Other Countries

The Down Syndrome Home Page (International)
Communicating Partners (US) – Dr James MacDonald, who works with children with Autism and Down syndrome
Down Syndrome Research Foundation and Resource Centre (US)
Down Syndrome: For New Parents
National Down Syndrome Education and Research Institute (US)
Down Syndrome: Health Issues (US) – Essays written by a pediatrician who has a son with Down syndrome, to help other parents.
Growth Charts (US) – Growth charts for children with Down syndrome.

April 2nd, 2002

Heaven’s Very Special Child

A meeting was held quite far from Earth.
“It’s time for another birth.”
Said the Angels to the Lord above,
“This special child will need much love.”

“Her progress may seem very slow,
Accomplishments she may not show,
And she’ll require extra care
From the folks she will meet down there.

“She may not run, or laugh, or play.
Her thoughts may seem quite far away.
In many ways she won’t adapt,
And she’ll be known as handicapped.

“So let’s be careful where she’s sent,
We want her life to be content.
Please Lord, find parents who
Will do a special job for you.

“They will not realise straight away
The leading role they’re asked to play,
But with this child sent from above
Comes stronger faith and richer love.

“And soon they’ll know the privilege given,
In caring for the gift from Heaven.
Their precious charge, so meek and mild,
Is Heaven’s very special child.”

This poem was written by Edna Massimilla. It was first published in The Optimist – the newsletter for PROUD, Parents’ Regional Outreach for Understanding Downs, Inc.

March 30th, 2002

Nortel Raffle Fundraiser

Every Friday, we have a raffle at my work (Nortel Networks in Wollongong) to raise money for charities. Normally the proceeds go to Camp Quality, but one Friday a month the money goes to a different charity, to spread the benefit around.

Because the NSW Down Syndrome Association has given Megan and I so much help since the birth of Grace, I asked if they could be added to the rotating schedule. Today was their turn. Since it was my cause, I bought $10 worth of tickets (normally I just buy $1 or $2 worth). When the raffle was drawn, I won! First prize was a choice between two bottles of alcohol or a $50 gift voucher, so I took the $50 and donated it to the DSA.

March 8th, 2002

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