15 people with Down syndrome help pregnant mom

from Raquel Villanueva from 9News NBC KUSA:

On February 9, an expecting mother who had just learned her child would be born with Down syndrome reached out to an Italian nonprofit.

"I'm scared: What kind of life will my child have?" the worried mother asked the Coordown organization in an email.
To help answer her question, Coordown teamed up with Saatchi & Saatchiad agency. Together, they interviewed 15 people with Down syndrome from different countries across Europe.
They released the responses on YouTube, in honor of World Down Syndrome Day, which is March 21.
The sweet answers reassure the expecting mother that her future son will "be able to hug" her and that they will one day grow up and have a job and other responsibilities.
"Sometimes it will be difficult," they caution. "Very difficult. Almost impossible."
But then ask "isn't it like that for all mothers?"

Ukrainians to Help Children with Down Syndrome

from FinChannel.com:
From February 1 through March 29 the fourth stage of the “Silver Coin” charity project will kick off in all branches of the UkrSibbank BNP Paribas Group.

The project, a joint initiative of the bank and the Ukrainian Down Syndrome Organization,  is aimed at raising funds needed for comprehensive diagnostics and providing consultations to the parents of children with Down Syndrome throughout Ukraine .  The initiators of this program plan to publish a special manual for parents. The remaining funds will be channeled into financing programs offered by the UDSO Early Development Center.
 
“The joint efforts of the bank, volunteers, and enthusiastic parents have resulted in this unique opportunity to help families that have children with Down Syndrome, to teach parents and specialists, and to build a decent future for these kids in Ukraine , without abandoning them or immigrating abroad,” says Serhii Kurianov, president of the UDSO and the father of eight-year-old Illia. 

According to the global statistical data, one newborn child out of seven hundred is affected by Down Syndrome. In all cases, this is the result of a purely genetic accident and is in no way connected to the lifestyle of the child’s parents. Nevertheless, even today Ukrainian society is still wary of children who have this condition. People continue to believe that such kids have no future and all attempts to educate them are merely a waste of time.

According to official Ukrainian statistics, every year more than 420 children are born with Down Syndrome in our country.. This is by far the main reason why parents abandon their child in the maternity hospital. As a result, these children become orphans practically from the moment they are born. They simply do not receive enough care and attention to develop properly because, instead of being helped to adapt, they are isolated. As a result, 20% of the children living in childcare centers in Kyiv alone have Down Syndrome, while up to 57% of residents in orphanages for children with disabilities are have Down Syndrome.
Scientists say that proper attention and care can actually have a significant impact on the development of such children. As BNP Paribas said, special programs can help bridge the gap between the child’s intelligence and physical development. Children with Down Syndrome who grow up in families can go to school, create works of art, work, engage in hobbies, and eventually integrate into society.
 
“As members of the bank of positive changes, we at UkrSibbank are striving to break the mould and make a change that will ease the entrenched (and utterly obsolete) negative attitudes to children with Down Syndrome. Increasing numbers of people are gradually realizing that these children have a soul like any other kids; they can feel joy, sorrow, love, and are able to make friends. Their hearts are open to people and they wait for openheartedness in return,” says Kostiantyn Lezhnin, Deputy Chairman of the Management Board at JSC UkrSibbank. “This is the fourth year in a row that the bank is supporting the “Silver Coin” project, and we are truly excited to see some real results. Reconsideration of life values comes at a slow pace, but people are extending a helping hand to these wonderful kids more and more often. Once again we are happy to encourage everyone to join us in this heartfelt initiative and deposit their pocket change in the piggy bank of good deeds. These children deserve our love.”

Hope vs Reality... and Perspective

from BabyCenter's group on Down syndrome:

Yesterday 2 people commented on how smart little B seems and it made me sad. I want to be hopeful but I also want to be realistic. I am afraid of being disappointed maybe? I want to love and accept her no matter what but sometimes my mind wanders to a place where she is keeping up with her peers . How do you reconcile this?

Great question!  I think this is something a lot of parents struggle with.

On the one hand, it's important to know that as a population people with DS have come so far due to changes in acceptance, medical progress, law changes.  We have so many more things available to us, including an easier exchange of info, the learning techniques developed through research at DSE.  People with DS ARE accomplishing things never imagined before.

I see these things, know they are beneficial. Sometimes I worry though - are new parents so fucused on these things that the future of a highly "successful" person with DS is the only future they can imagine?  Are they clinging to that - in a healthy way, or sometimes in an unhealthy way?

I see phrases like "except don't accept" and "more alike than different" sometimes used as things that create a type of tunnel vision - THIS is the path, THIS is the future, if I just concentrate hard enough, give her enough therapies, explore every option, work with her enough, don't accept "that type" of behavior, push, push, push.  The negative flip-side to that - sometimes - is the implication that if a child is not progressing to a certain ideal, it is the "fault" of parents.  They did not "expect" enough and shame on them:  I've seen that come out on this board sometimes, and other places.  And I've seen some parents of children or adults who are not "performing" to a certain level, or "behaving" a certain way, or even experiencing more than the typical medical conditions - stung by comments, with a result that they sometimes feel they are not supposed to share.

The "reality" is that people with DS are a diverse collection of individuals.  A lot goes into that diversity:
- knowledge of parents
- efforts of parents
- opportunities available in the community (school, etc.)
- medical conditions & availability of treatment
- unique genetics of the family
- those genes of that individual - both the variation in the extra 21st chromosome material, and the genes aliong the rest of the chromosomes (There was some great congressional testimony on this but I can't put my hands on it.)
- the presence/ absence of associated with DS but not necessarily common behavioral issues (elopement, OCD, sensory issues, etc.)
- the development & use of safe, proven treatments, some currently in trials, some being developed
- and likely a host of other factors (nature, nurture) that make up who we are.

I have 8 brothers and sisters, all the same parents, same home, same upbringing.  My sister and I are night & day - and the rest of them fall somewhere in between.

People with DS are influenced by that extra 21st chromosome, but are MORE than the 21st chromosome which impacts many systems - they have a whole bunch of other genetic material influencing who they are, and certain of those genes interact with that extra genetic material.
Give your child love, learn what you can, and do what you can, understanding that you still must live your life and you have other responsibilities.  Give your child the proper tools, but try to embrace who she is.  Your child will make you proud regardless of "performance." A child who does not meet certain preset "expectations" is NOT a consolation prize - she is a unique individual with a place at your table, in your home, at your school, in the community, in this world.  She will be your superstar - whether than is seen by some objective measurement or not.

BabyCenter's group on Down syndrome is for sharing our children's triumphs (OK, shamelessly brag), challenges (OK, throw a pity party), ask questions, share advice, experiences and information with each other.