Worlds Down Syndrome Day!!!

@vanitha pona jenmaththu vita korai thotta korai pola athaan ippadi arattai adikirom )

Nice to know that its your favorite name.

 

Thanks B. Thanks for stepping in.

 

How friends can help


How should we react if a baby with Down syndrome is born to someone close to us?
Most friends respond to the news of the new arrival from parents in a positve way, some avoid it and some apologise. The bottom line is people don't know what to say, consequently they unintentionally resort to cliche's and sorrow which can be hurtful.

Here are some suggestions for do's and don'ts when a friend or relative tells you his or her baby has Down Syndrome.


Things that parents want to hear:

"Congratulations" first and foremost. This conveys acceptance which is very important to new parents.

Ask the normal questions you would ask any new parent (feeding, sleeping, weight, ask for pictures, etc.)

In most cases, actions speak louder than words. Friends and relatives that actually do something make more of an impact than any words they could have said. Meals, baby-sitting, friends who actually take the time to learn about the disability by researching it. Offering to look up information on the Internet if they don't have access. Concrete things, not 'let me know if you need anything'. Be available.

Compliments.
"She's a wonderful baby and lucky to have parents like you."
"Can I hold her?"

Acknowledgement of the emotions and feelings parents may be having:
"This was probably a big shock, and it will take some time for things to feel in balance again."
"I know I can't take the hurt away but I wish I could."

A card might read "Thinking of you...we love you and love your baby"
Things parents hate to hear:

"I'm Sorry." "What a Shame." "How sad." "Poor thing.". "It could be worse".
Or any statement that conveys or infers pity.

Questions like "How severely is he affected?" or "Didn't you have the tests?"

Statements like "God gives special children special parents."

Sainthood statements. Don't tell parents "I couldn't do it." I couldn't handle it." "You're a saint." Statements like these imply that people with a disabilities are a huge burden.

Stereotypical statements like "They're such happy and loving children." Such comments are just not helpful and not true.


Down the track

Most parents don't feel the need to pointedly refer to Down syndrome later down the track and appreciate others who do not feel the need to comment on it. What is appreciated is when people simply talk to the child, interact with him/her and encourage their children to play.

Try to use the right terminology. Remember that it is a child with Down Syndrome, not a Down Syndrome child. A subtle difference with much meaning and shows that you see the baby before the disability.

Develop and maintain a positive and realistic outlook - offer your help and understanding and support the family in their decisions in regard to their child.

As much as possible, treat this new child just as you would any other child - try not to make allowances, especially in social behaviour and good manners, with regard to the disability. Some skills may take longer to learn than for other children - and that's OK.
Supporting your friends

Parents stay afloat in stressful times by grasping tight to those they trust. Don't force your own opinions on them or do anything to destabilise their fragile life supports.

Listen and be there for your friends.

Questioning the competence of those in charge, belittling the doctor's expertise and encouraging them to seek miracle cures is downright destructive. We need to sustain, not sabotage.

Time heals the deepest emotional wounds, but time spent supported by good friends will help them heal all the quicker.

Source: To Those Campaigning for Acceptance of People With Disabilities, Please Remember This | The Mighty

 

To Those Campaigning for Acceptance of People With Disabilities, Please Remember This


It may just be me, but it seems with all the heavy promoting by various organizations, parents and other people for the acceptance of children with special needs, that we, as a whole, are trying to sell everyone a better, more desirable version of the child and their disability.
I say this as news stories abound everywhere on social media, like Facebook, Instagram and Twitter, with pictures galore of children and adults with Down syndrome, autism or other disabilities. In these pictures the children are participating in athletics like cheerleading, basketball and wrestling for their school teams, graduating from high school with their diploma in hand, modeling for Target, Nordstrom or Toys ‘R Us catalogs, getting a job or even being a bat boy for the Cincinnati Reds.
There are videos of dancers, musicians or athletes with Down syndrome and autism blowing people’s ever-loving minds with their abilities. Marriages, driver’s licenses and college-bound adults with disabilities are also on the rise. How about the teenage kid with autism who’s a physics genius and working on his own theory of relativity?
These are all amazing achievements from awe-inspiring individuals, and we all go “ooooh,” and “aaaah,” and smile. Maybe we even shed a few happy tears watching the videos, hearing the stories and seeing the pictures. Especially those of us who have a child with the same disability. We revel in it, all the while probably secretly, or even outwardly, hoping, yearning and praying for the same or higher accomplishments and recognitions for our child.
Now don’t get me wrong, I think it’s wonderful these people are all able to participate in something they love and excel at it. And I really do enjoy seeing their happy faces beaming with the pride of what they’ve achieved with a lot of hard work. There are so many individuals exceeding expectations, goals and misconceived mindsets, and it is a sight to behold. Of course they should celebrate and share their accomplishments, but I think we as a society desire the “higher functioning” child.
What about those so-called “lower functioning” individuals? What place do they have? Shouldn’t the child quietly sitting in a wheelchair deserve as much recognition and acceptance for their abilities, whatever they may be or as minor as they may seem?
What if a person with significant mental or physical delays isn’t involved in organized sports or can’t be trained to hold a job? What if they’re never potty-trained, always need help taking a shower and are unable to feed themselves with a spoon? Would it really be awful if they never moved out? Can society enjoy an individual who’s needs are higher and ambitions less headline-worthy?
I was especially conflicted in summer when I attended a Down syndrome convention. Everywhere you turned there were presentations and praise for teens and adults with Down syndrome who’d exceeded all expectations. These individuals with Down syndrome were more alike than different from those who don’t have Down syndrome. I felt torn because on one hand, I could see this kind of future for my one daughter, who has Down syndrome and falls under the “high functioning” label (I’ve actually been asked multiple times if she has just “a touch of Down syndrome.
But on the other hand, my other daughter, who also has Down syndrome, wasn’t like these individuals at the convention. She’s perceived as “low functioning” by most who meet her because on top of having Down syndrome, she also has autism. This dual diagnosis makes her different from her peers who just have Down syndrome.


Here I was at a convention all about Down syndrome, yet I felt like my one daughter was somewhat excluded because she couldn’t quite fit the convention’s overall emphasis on individuals with Down syndrome who most would label “high functioning.” It was disheartening.
In my opinion, there should not be such a strong focus on someone’s level of function, how verbal they are or what life skills they’ve mastered when trying to obtain acceptance, raise awareness, maintain dignity and gain the use of inclusive practices. Perhaps someone with a disability feels like they’re in the shadows, ignored or undervalued when compared to peers with the same diagnosis who are celebrated for their successes in their life.
My wish, no, my dream these days is for everyone to value, respect and praise individuals like my daughter, who have multiple diagnoses.
Or the child who will never walk.
Or the nonverbal teenager rapidly rocking in church and making loud vocalizations.
Or the 35-year-old man holding his mom’s hand at the mall.
I want these people to be valued and praised as much as the ones who can run, talk, dance in recitals, score a touchdown, shoot a winning 3-point-shot, earn their high school diploma or graduate from college by the time they’re 16. I’d also love to see a child with Treacher Collins syndrome or a cleft palate (repaired or not) grace the pages of a department store catalog.
If you’re promoting the acceptance of disabilities, then please embrace and include everyone — the lower functioning, the mid-functioning and of course the higher functioning. They all have a story and need to be celebrated because in the end all life is precious, no matter the functioning level.