Beyond Awareness: National Down Syndrome Acceptance Month

by Meriah Nichols from The Huffington Post:
October is Down Syndrome Awareness Month here in the United States. I'm personally not out to promote awareness anymore, because we are there already.
We are aware.
We are aware that people with Down syndrome are the same as people without: deserving of equal rights, opportunities and privileges. We are aware of what features associated with Down syndrome look like, we are aware of discrimination and prejudice that is regularly leveled at people with Down syndrome.
We are aware that the world is not often kind to people with Down syndrome -- that people with Down syndrome can suffer horribly at the hands of people who do not accept them. Those hurting hands can belong to relatives, to members of the justice system, to acquaintances or strangers. Yes, we are aware of this, and perhaps this is partly the fear that keeps women from choosing to have a child with Down syndrome, perhaps this awareness does more harm than good.
I want us to try to move beyond awareness. I want us to move into acceptance.
Let's try to put our awareness into action and actively accept people with Down syndrome. Let's try and move two steps past our comfort zone, whatever that might be.
Are you uncomfortable around people with Down syndrome? Let's be honest here. If you are, go ahead and challenge yourself to just go up to someone with Down syndrome, look at them and greet them from your heart. A sincere "hello".
And then move forward.

10 things TO SAY when a baby is born with Down syndrome

by Gillian Marchenko from SpecialNeedsParenting.net:

Today is October 1st, which kicks off Down syndrome awareness month.  In honor of doing my part to raise awareness about individuals like my two daughters Polly and Evangeline, I’m sharing one of my favorite lists: 10 things TO SAY when a baby is born with Down syndrome.

A while back I posted 10 things not to say to a parent of a child with Down syndrome.

Someone emailed me a day or two later.

“My father and I were talking about your post about 10 things not to say to a parent of a child with Down syndrome, and we were wondering … What should we say?  … Please, help us. We really want to know.”

I was touched by this person’s desire to learn about such a delicate subject.

I’ve given this some thought. I know every parent is different, so not all of these on my list will resonate with everyone.

Here’s my list of 10 things to say to when a baby is born with Down syndrome

10. How are you doing?

After my daughter Polly’s birth and diagnosis of Down syndrome, I appreciated friends and family asking how I was doing. I realize not everyone would want to talk about their feelings but it meant a lot to me when people reached out and “went there.”

Easing into Eugenics: Forecasts of a Diminshed Down Syndrome Population

by Stephanie Petroni from northernhoot.com:
In examining the evolution of society’s treatment of those who experience perceived disabilities- intellectual or physical, it would seem that progress has been significant. The last institution in Ontario that warehoused almost 2, 000 people with developmental disabilities was closed in 2009. Individuals were relocated to their original communities where most will live out the rest of their days in small group homes or in fewer cases, with family. The educational system and workplace are striving towards inclusive environments and there is an increase in government support for individuals so that people of all abilities may fully participate in all aspects of community.
However, various Down Syndrome organizations, as well as many self-advocates, have been sounding the alarm on the topic of pre-screening for the extra 21st chromosome during pregnancy.

Dementia in those with Down syndrome now twice as likely

by Christina Finn from thejournal.ie:

THE PREVALENCE OF dementia among people with Down syndrome has almost doubled, according to a new study by Trinity College’s School of Nursing and Midwifery.
Dementia has increased from 15.8% to 29.9%, according to the second wave of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (TILDA).
This is a much higher level than those seen in the general population.

Intellectual disability 
Not only has the prevalence almost doubled, but the study, which is the first one in the world to include people with a intellectual disability (ID) into a long term ageing study, shows that the average age of the onset of dementia for people with Down syndrome is 55 years old, with some cases presenting in their 40s.
By comparison, the majority with dementia in the general population are over 65 years of age.
Osteoporosis has also doubled since the first wave of the report three years ago. It has doubled from 8.1% to 16.4% for those with an ID. The study showed that nearly 70% who took part in the health assessment study had poor bone health, which the report states indicates a high level of under diagnosing.
There was also a 50% increase in cataracts.
Other findings show that those with an ID are less like to suffer from other conditions.
Rates of hypertension were more than 50% lower in the ID group (17.5%) than those in the general population (37%).

Helping children with Down syndrome to develop clearer speech

Helping children with Down syndrome to develop clearer speech People with Down syndrome often struggle to express themselves clearly. This can be frustrating and a significant obstacle in daily life and in education. Speech clarity is one of the most common concerns identified by families of children with Down syndrome. To help children with Down syndrome develop clearer speech, we are developing new, evidence-based resources to practice speech sound recognition, discrimination and production, combining speech sounds, and saying and repeating whole words and phrases. DSE's See and Learn Speech resources begin with See and Learn Playing with Sounds, offering activities to expose young children to individual speech sounds, to teach them to distinguish between sounds and to encourage them to imitate and practice saying individual sounds. Next, See and Learn Putting Sounds Together provides activities to help children practice saying simple vowel-consonant combinations and symbolic sounds. NEW EDITIONS AND APPS COMING SOON - New versions of See and Learn Playing with Sounds and See and Learn Putting Sounds Together will be available both as apps and as printed kits in late October. Following from See and Learn Putting Sounds Together, See and Learn Saying Words offers activities to practice saying whole words in sets of words beginning with the same sound. Research suggests that repeated practice saying whole words can improve speech clarity for young people with Down syndrome. Together with See and Learn Saying More Words and See and Learn Saying Later Words, DSE's speech resources offer structured activities to encourage regular speech practice. AVAILABLE NOW - Our new See and Learn Saying Words, See and Learn Saying More Words and See and Learn Saying Later Words apps are available to download now for iPads, Android tablets and Windows 8.1 tablets and PCs. Our apps include both UK and US English resources, guides and record forms. UK English printed editions of See and Learn Saying Words, See and Learn Saying More Words and See and Learn Saying Later Words are also now available to order from our UK online store. (Printed US English editions will be available soon from our US online store.)

Saying Words See and Learn Saying Words provides simple activities that encourage the imitation and repetition of one- and two-syllable words. It includes eight sets of words, each starting with a speech sound that usually develops early in typical development (b, d, m, p, y, n, w and h). Saying More Words See and Learn Saying More Words continues to introduce target words representing a range of vowel-consonant combinations and vocabulary suitable for younger children and likely to follow developmentally from those introduced in Saying Words (c/k, ch, f, g, r, t and v). Saying Later Words See and Learn Saying Later Words includes activities to practice six sets of one or two syllable words beginning with sounds that typically develop following those introduced in See and Learn Saying More Words (sh, th, s, z, l, and j).

See and Learn Speech webinar Join us on Friday for a free webinar to learn more about our See and Learn Speech resources and how they are designed to help children with Down syndrome develop clearer speech. Find out more...

Support better education for children with Down syndrome For over 30 years, DSE has advanced our understanding of the needs of children with Down syndrome and pioneered better teaching approaches. Our research and resources help over 130,000 people in over 190 countries worldwide each year. Our work for young people with Down syndrome and their families around the world depends on the generous support of our donors. We need your support to fund vital new research, to develop and evaluate new and improved teaching resources, and to develop and provide more effective training for teachers, teaching assistants and therapists. Help us ensure a better future for children with Down syndrome today. Donate

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