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Finding ‘Love in Every Stitch’ Parenting My Child With Down Syndrome

I am knitting. There. I’ve admitted it. After all these years, I am learning to knit. And I am loving it.

I’ve never been a fan, it’s fair to say. There were better things to do with my time; not that I had the time to do better things. I felt superior. That knitting was beneath me. Fanciful yet dull. Not cultured enough. I suppose I even looked down on those who spent time and money on this hobby. Believing them and their creations to be less than. Preferring shop-bought perfection over (what I saw as) imperfect and clumsy-looking. Frills and frou frou.

I was the same with houses. Give me a modern, easy to maintain, some say characterless, property over an older one with its quirky features and creaky floorboards any day.

I didn’t see the joy. The love in every stitch. The story in every room. All I knew was prejudice – towards knitting and crafting. Towards joy. Until last week.

In a few short months I have been truly humbled by some new friends. Their love and joy for this most ancient of crafts has made me realize how much I have been missing. I am coming to regard hand-crafted items I once would have been disdainful of as things of beauty. Things that have the power to make my heart sing, even. Love in every stitch.

So last week, I began to learn to knit. It did not start well. The woman in the shop asked me if I had chosen the right size needles. Did they have the right number on them? She obviously saw my hesitation and suggested I could go back and change them if they were the wrong ones.
I just nodded. I hadn’t the faintest idea what she meant. Her next question stumped me completely.

“What are you knitting? What’s it going to be?” Again, I had no idea. But in a moment, across the counter, I knew it didn’t matter. I knew that whatever I knitted would be beautiful. Unique. A one-off. It mattered not what it was, or how long it would take to finish – if ever. It was mine.

I paid, stuffed the needles and a ball of wool into my bag and left the store. Excited.

There’s a verse in the Bible I have always loved. “You knit me together in my mother’s womb… I am fearfully and wonderfully made.” — Psalm 139.

When my baby was born with Down syndrome, I had many other prejudices that needed taking down. Prejudices about people with Down syndrome. Ideas that they were somehow less than other people. I craved the “perfection” I saw in babies without an extra chromosome. I asked why my baby had been given the “wrong number.” I wondered what she would become. How would she turn out?

Others asked this question too. Some asked it before she was born. They said I could forget about her and try again. Hopefully get one with the right number. For all my prejudices about people with Down syndrome, this suggestion was abhorrent to me.

Five and a half years on and I know now she does not have the wrong number. There is no such thing. She has a different number. That is all. She is knitted together — fearfully and wonderfully made. And there is love in every stitch.

 

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6 facts about Down’s syndrome you should know

Around one in every 1000 babies born in the UK are born with Downs’ syndrome, a genetic condition that affects about 40,000 people in the country, according to the Down’s Syndrome Association.

Down’s syndrome awareness week (20-26th March) focuses on allowing people with Down’s syndrome to express themselves and be heard in their communities. In honour of the week-long event, the DSA has compiled five things the average person might not know about Down’s syndrome.

1. Down’s syndrome is a learning disability, not an illness

Down’s syndrome is not a disease. It is caused by the presence of an extra chromosome in a baby’s cells. People with Down’s syndrome are not ill and do not “suffer” from the condition, they will have a learning disability. The learning disability affects a person’s ability to learn, it does not mean they cannot learn.

2. Relationships are the same

People with Down’s syndrome are perfectly capable of forming all types of relationships with people they encounter in their lives, be it friendship, love or a dislike of someone.

3. Every person is unique

There are certain physical characteristics that can occur. People with Down’s syndrome can have all of them or none. A person with Down’s syndrome will always look more like his or her close family than someone else with the condition.

4. We all get emotional

People with Down’s syndrome have the same feelings and moods as everyone else. They have ups and downs and can like or dislike things and/or people.

5. Not all babies with Down’s syndrome are born to older mothers 

Eighty percent of children with Down’s syndrome are born to women younger than 35. However, the likelihood of having a child with Down’s syndrome does increase with the age of the mother.

6. There are employment opportunities

As long as the right support is given, people with Down’s syndrome are able to work. The DSA, launched their WorkFit programme in 2012, designed to turn the ‘supported employment’ concept on its head. WorkFit is a tailored service dedicated to training employers about the Down’s syndrome learning profile, finding the right employment opportunities, for the right people. There are currently 226 employers registered to the programme including The Environment Agency, Costa Coffee and Premier Inn.

 

Source:standard.co.uk

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What people with Down’s syndrome and their families wish you WOULDN’T say

Since Down’s syndrome was recognised by John Langdon Down in 1866, attitudes towards and knowledge of the condition have progressed and become more informed.

But there’s still a way to go.

One in 1000 babies born are with Down’s syndrome and there are 40,000 indivIduals living with the condition in the UK .

Yet incorrect and hurtful terminology is still common, as are many misconceptions about the condition.

To help educate others an break down the barriers many people with Down’s syndrome face, the Down’s Syndrome Association have compiled a list of things to avoid saying and have debunked some enduring myths.

DON’T say…

  • Suffers from OR is a victim of Down’s syndrome.
  • A Down’s baby/person/child
  • Retarded/mentally handicapped/backward
  • Disease/illness/handicap
  • The RISK of a baby having Down’s syndrome (in relation to pre-natal screening and probability assessments).
  • Down’s (as an abbreviation).

Do say…

  • Has Down’s syndrome.
  • A person/baby/child with Down’s syndrome or who has Down’s syndrome.
  • Learning disability.
  • Condition OR genetic condition.
  • The chance of a baby having Down’s syndrome.
  • DS (as an abbreviation if necessary).

Myths.

  • People with Down’s syndrome don’t live very long.
  • Only older mothers have babies with Down’s syndrome.
  • People with Down’s syndrome cannot achieve normal life goals.
  • People with Down’s syndrome all look the same.
  • People with Down’s syndrome are always happy and affectionate.

Facts.

  • Today, people with Down’s syndrome can look forward to a life of 60 years plus.
  • Although older mothers have a higher individual chance of having a baby with Down’s syndrome, more are born to younger mothers, reflecting the higher birth rate in this age group.
  • With the right support, people with Down’s syndrome can achieve normal life goals. The vast majority of people with Down’s syndrome learn to walk and talk, and many are now attending mainstream schools, passing GCSEs and living full, semi-independent adult lives.
  • There are certain physical characteristics that can occur. People with Down’s syndrome can have all of them or none. A person with Down’s syndrome will always look more like his or her close family than someone else with the condition.
  • We are all individuals and people with Down’s syndrome are no different to anyone else in their character traits and varying moods.

Source:mirror.co.uk

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Mélanie Ségard Will Be France’s First Weather Woman With Down Syndrome

Mélanie Ségard has always dreamed of being a weather woman on TV. On Monday, the 21-year-old Frenchwoman, who has Down syndrome, posted a video on Facebook asking people to like her Facebook page with the hopes of attracting the eye of her local news channel.

“I’m different, but I want to show everyone that I can do a lot of things,” Ségard wrote on her page. “I want to prove it by presenting on TV.” Less than a week later, her video has been watched almost three million times and more than 189,000 people have liked her Facebook page.

“Today, people with a disability are invisible,” a spokesperson for the National Union of Charities for Parents with Disabled Children (UNAPEI), said in a statement. UNAPEI has helped Ségard coordinate her campaign. “The 100,000 likes are a sign of strong support – we are taken aback at how quickly the page became a success.”

So far, Ségard’s campaign is working. She’s caught the attention of BFMTV and France 2 – two French news channels – both of whom have invited her on air to present the weather on March 27. This would make Ségard the France’s first weatherperson with Down syndrome, according to The Telegraph.

In January 2016, two Special Olympics athletes became the first reporters with Down syndrome to work at Denver7 News, an ABC affiliate in the U.S. Hanna Atkinson, 21, from Littleton, Colorado, and Connor Long, also 21, from Louisville, Colorado, conducted interviews and hosted segments on the athletes, coaches, volunteers and families of Special Olympics Colorado. They worked in the studio with anchor Eric Kahnert and out in the field with a production team.

 

Source:themighty

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Supreme Court rejects plea to abort 26-week-old foetus with Down Syndrome

The Supreme Court today refused to allow a woman to abort her 26-week foetus that would be born with Down Syndrome.

The apex court said that aborting a 20-plus week foetus can be allowed only in cases where there is a danger to the life of the mother or the foetus. Medical reports said the woman’s child may suffer from physical and mental problems and with low intelligence, but there was no physical risk to the mother in continuing the pregnancy.

“It is sad that the child may suffer from physical and mental challenges and it’s unfortunate for the mother but we can’t allow an abortion…We have a life in our hands,” the court said.

Down Syndrome is a congenital disorder which causes intellectual impairment and physical abnormalities.

A two-judge bench of the apex court, headed by Justice S.A. Bobde and Justice L. Nageswara Rao, passed the interim order. Meanwhile, the Centre informed the bench that it is considering extending medical termination of foetuses of up to 24 weeks.

In February, the top court allowed a 22-year-old woman to terminate her 24-week pregnancy on the ground that it would endanger her life.

In January, the apex court allowed a Mumbai-based woman, who was in her 24th week of pregnancy, to terminate her pregnancy under the Medical Termination of Pregnancy Act. The court took into consideration a medical report that suggested the foetus would not be able to survive without the skull.

 

Source:timesofindia

Australian model and designer Madeline Stuart, who has Down syndrome, acknowledges attendees after presenting creations from her label 21 Reasons Why By Madeline Stuart during New York Fashion Week in Manhattan, New York, U.S., February 12, 2017. REUTERS/Andrew Kelly

Model with Down syndrome launches design label at NY Fashion Week

Less than two years after making her runway debut, Madeline Stuart, a model with Down syndrome, launched her own fashion label on Sunday at New York Fashion Week with a collection of sporty leggings, crop tops and skirts.

The Australian-born model challenged fashion industry norms with her first catwalk appearance in 2015 and is credited with changing perceptions about people with Down syndrome. She hopes to do the same with her new label, 21 Reasons Why by Madeline Stuart.

Wearing blue patterned leggings, Stuart kicked off the packed show that featured casual looks designed for comfort and ease. She paired short flared skirts with long and shirt-sleeve crop tops and T-shirts that could be mixed and matched with dark and patterned leggings.

“It really does represent who she is,” Roseanne Stuart, Madeline’s mother, manager and design collaborator, said about the collection that will be sold exclusively online.

The collection’s name is a nod to Stuart turning 21 this year and the extra copy of chromosome 21 that is characteristic of Down syndrome.

The genetic disorder that affects development occurs in about one in 700 births, according to the U.S. Centers for Disease Control and Prevention. About 6,000 babies are born with Down syndrome in the United States each year.

Since first stepping on the runway, the Brisbane-based model has not looked back and has appeared in fashion shows around the globe. After walking in two other shows in New York, she is heading to Paris and then Los Angeles and other U.S. cities before returning to Australia in late April.

Stuart, whose speech is limited, wanted to be a model immediately after seeing her first fashion show in Australia.

“Madeline has never had the concept that she can’t achieve anything,” her mother said in an interview, adding that after four seasons modeling in New York, she had shown her staying power.

Sara Hart Weir, president of the National Down Syndrome Society, believes Stuart has been an inspiration for others like her and has raised the expectations of people who have never met someone with the condition.

“By debuting her own fashion line and becoming a businesswoman, she is showing other individuals with Down syndrome that is it OK to have your own hopes and aspirations,” she said.

“The expectations for children with Down syndrome are higher than ever,” she added.

(Editing by Peter Cooney)

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Watch Boy With Down Syndrome Dance With Gaga to “Born This Way”

10-year-old Nico Perry may be non-verbal, but his happy little dance-along with his favorite pop star says it all.

Nico has Down syndrome as well as being functionally non-verbal – so when Lady Gaga started her performance of “Born This Way” at the Super Bowl half-time show, Nico couldn’t agree more.

His father David, who shared the video of his shimmying son on Twitter, couldn’t help but be moved by his son’s enthusiasm.

 

The magical anthem of individuality doesn’t specifically mention disabilities, but Nico relates to the proud message anyway by unabashedly being his funky little self.

“He was born his way too,” said David. “My son dances like someone’s watching. In fact he checks every so often and gets mad if you’re not watching.”

(WATCH the video below)

Source:goodnewsnetwork.org

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Amazing Couple Takes Care of 9 Kids With Down Syndrome: “It’s Such a Privilege”

When Dave and Jane Daulton first learned that their son Tommy had Down syndrome, they prayed that God would “fix” and “cure” him of the disorder, Baby Center blog reported.

But when they almost lost him six weeks after birth, the Pennsylvania family began to realize just how valuable their son’s life was, just as he was.

“[Tommy] went into full cardiac arrest at around 6 weeks old, and we had to resuscitate him several times on the way to the hospital,” Dave Daulton said. “When you’re fighting for your child’s life…it bonds you…it’s like ‘this life is so precious’… we’re happy with who he is.”

However, the story doesn’t end there. Five years later, inspired by their son’s life as well as a dream in the middle of the night about having a baby with Down Syndrome, the couple agreed to adopt ten children over the next two decades who all had Down Syndrome. One child unfortunately died within nine months of coming home with the family, but the remaining children have overjoyed the Daulton family. The family now has five biological children and nine adopted children.

 

“It’s such a privilege. I think everyone should have a child with Down syndrome. We have had nothing but love from these children…we would be so much poorer without them,” Jane Daulton told Christian Broadcast Network.

Down syndrome is a chromosomal abnormality that occurs when a child inherits an extra 21st chromosome, according to the NIH U.S. National Library of Medicine. The condition manifests in varying degrees of severity, but may affect intellectual abilities, facial expressions, cognitive functioning and weakened muscle tone. Childhood speech and language development may be delayed. Other symptoms may include hearing loss, sleep apnea, ear and eye conditions and congenital heart problems, according to the Centers for Disease Control.

The condition occurs in one of every 800 newborns, the NIH continues, resulting in the birth of 5,300 babies annually diagnosed with Down Syndrome. Nationally, about 200,000 people in the United States are living with the condition.

Per the CDC, there are diagnostic tests that can be used to screen for the condition prenatally, leading many doctors to advocate abortion, but many parents elect to grant their child life despite the diagnosis. Many children with Down syndrome grow up to have a reasonable quality of life, and resources are available for parents who initially may feel they cannot cope with the additional challenges of the condition.

“There are 200 million orphans in the world, there are 4 billion Christians. There should not be a single orphan’s bed filled,” Daulton said.

Source:lifenews.com

 

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To Donald Trump, From the Mother of a Child With Down Syndrome

Dear President-Elect Donald Trump,

I am writing this letter to you today to explain why I have been crying in the months after learning you were going to be our President. Did you know we have been weeping? I cannot speak for the millions of others who I hear have been crying in this diverse nation we live in, because I have not walked in their shoes; I can only speak for myself. I am very scared and I want to know what your plans are on a few very important issues that affect the life, the actual heart, of my child.

At 26 weeks in utero, we learned that my daughter would be born with a congenital heart defect. At 28 weeks we learned she would also be born with Trisomy 21, commonly known as Down syndrome, a genetic condition linked to heart defects and various other potential health issues.

I am crying because in the days after we learned of our daughter’s diagnosis, the only thing we were really afraid of was the rest of the world and how it would treat her. The “r-word” instantly stung, and we were suddenly acutely aware of the subtle, underlying, ableism that we were not aware of before. When I heard you had been accused of mocking a reporter with a disability, I gave you the benefit of the doubt at first, because even given the various distasteful remarks that were a part of your campaign, this was much more so. I sought information in your defense. What I found as your defense was that you’ve been making the same gesture with your arms and making the same odd voice for some time now, when mocking someone whose views you disagree with.

Defenders pointed out that in the case of Serge Kovaleski, you weren’t specifically making fun of his disability, it was just the way you “mocked” people. But the thing is, I remember that from elementary school. That’s how children mock people with cerebral palsy, Down syndrome, autism, and other disabilities. Ann Coulter remembers too, according to her distasteful remarks in your defense. Do you remember? It’s almost a relief to think you aren’t even aware that you were doing it, that it’s just ingrained in you.

Almost, but then again, it is terrifying. You’ve not listened when the disability community let you know they were offended, but instead defended and denied your actions. You are now our leader! Shouldn’t our leader be the one who listens when no one else will? I ask that you listen — what you’ve done is hurtful, and frightening, because as the leader of our country you’ve given the rest of our society permission to behave the same way. To marginalize while claiming they aren’t marginalizing. That’s dangerous. Don’t take offense when we tell you this — how were you to know? — but do apologize.

I assume you do not have a relationship with a person with Down syndrome, because if you did, I would think disability rights would have been a more visible part of your campaign. I would like you to know Down syndrome is the best thing that has happened to myself and my family. The other children and adults I have met who have Down syndrome have altered my world view and garnered my respect for their optimism and resilience. My now 2-year-old daughter with Down syndrome is already a valuable part of her community. The Down syndrome community does not want or need sympathy. People with Down syndrome are not suffering from Down syndrome, they are living with Down syndrome.

I also want you to stop for a moment and think about having to constantly and passionately defend Ivanka, Tiffany, Eric, Donald Jr., or Barron’s very existence in this way. Defending their worth in this world.

And while I am not writing today to discuss the fact that the vast majority (the number varies from around 65%-92% depending on which study you look at) of fetuses diagnosed in utero with T21 are terminated, I will assume that given your stance on abortion, you would not suggest this as a better alternative to bringing a baby with Down syndrome into this world. Certainly given how adamantly you were opposed to the thought of “ripping babies out of the mother” in the third trimester, which is approximately when we learned of my daughter’s conditions, it appears you believe she has a right to live.

So given that we agree that my daughter deserved to be born, and given that she contributes and will continue to contribute as much to our society as you or I (honestly, I feel like she may contribute more than I have already) I wonder how you plan to continue to protect her, since she may or may not be well-equipped to protect herself?

I also have a few additional questions for you.

1) I understand you would like to repeal Obamacare (and I know you are not alone in this desire). I would like to know what you plan to replace it with? My daughter was born with a heart defect she had repaired at 3 months old. She sees various specialists to watch for a list of additional potential health issues she is at higher risk for. It is my hope that surely our country won’t desert my daughter and the millions like her, who are at risk of instantly being denied private insurance due to a pre-existing condition while she is still under 26 and on our insurance (or possibly 18, depending on whether or not you also plan to cut that part of the Act), or potentially losing her Medicaid coverage if you roll back the Federal increase in Medicaid spending.

I’ve seen a few proposals floating around, but I want to know what you plan to do, because I have seen little information on the specifics, except that you are most definitely getting rid of the only thing that is protecting my daughter’s life and the well-being of my family at this time. If we were to have to pay out of pocket for her care, we would easily be in devastating debt within several months, and would continue to fall into greater debt with each passing week. Currently, we are contributing members of the U.S. economy.

Can you see how this is frightening? I want to know you have her in mind as you work to craft something better.

2) I’ve heard a lot from you about large employers being responsible for caring for our citizens. What if my daughter can’t find gainful employment? How will you help protect her? We are already doing all we can to put a plan in place for her, should something happen to my husband and I, but our plan also involves some degree of government support, rather than relying solely on a future employer to make sure her needs are met. Can you tell me what you plan to do for those Americans who might not be able to work a traditional job, or who might have a minimum wage job for life due to a cognitive or physical disability, possibly due to unfair hiring practices rather than their own abilities? If your plan is to rely on the free market to help support our citizens, how do you intend to continue to make sure that is happening: that the profits of our largest corporations are, in fact, “trickling down” to our most vulnerable people?

At this point, I want to mention that we don’t know what my daughter will be capable of. She may very well be able to hold a traditional full-time job. Her ability to do so may also be determined by the path our country takes as she grows. It’s important you know that.

3) Finally, I would like to hear whether you value her worth, even though she may not meet your traditional standards of beauty. We’ve already agreed that you believe she had a right to be born. Do you believe she has as much right to respect and dignity as you do now that she is here? Do you think she deserves to be treated like a person and not an object, given that she is both female and has a disability? I would like to give you the opportunity to say as much, because while I haven’t heard you not say it, I have also heard you say several things that suggest the opposite.

In conclusion, I am still weeping, but I have hope. I have hope because you have remained silent on the question of disability rights until now, so perhaps just asking might be enough? I’d like to remind you that this minority group, “the disabled,” is the only minority group that any one of us could find ourselves a part of at any moment, including you or I. Not that this should matter, but I am aware that it might to you.

I’d also encourage you to keep in mind that the parents of children with special needs are some of the most resilient, passionate, and unrelenting folks, and you’d much rather have us with you than against you. We come from all ethnic and economic backgrounds all across the country and vote for different people, but the one thing we have in common is our magnified love for our children — something to keep in mind as we make our way forward.

I have not been very involved in politics or activism in the past, but I can assure you I will be asking more questions, listening harder, and speaking out louder now, and I am sure I will not be the only one. Thank you for helping me find my voice.

 

Source:Themighty

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HIGH SCHOOL WRESTLER WITH DOWN SYNDROME SCORES BIG VICTORY IN NEW JERSEY

A high school wrestler scored a big victory during his varsity debut.

David Richards pinned his opponent in a minute flat to the cheers of teammates, coaches and his parents.

David has Down syndrome and spent years practicing for that moment.

A YouTube video shows what is amazing about athletes with huge hearts and how competition can teach compassion and boost confidence.

It was senior David’s very first varsity wrestling match.

“I saw you flip that guy, was it hard?” Eyewitness News asked.

“It was tough and it was good,” David said.

“The atmosphere in the gym was priceless to see how the place erupted when David got his first fall,” said Mike Kiley, wrestling head coach. “It was great.”

His opponent was freshman Richie Wall, from Middletown North High School.

He volunteered for the bout, and gave David, who obviously soars in the face of Down syndrome, an awesome experience, a win.

“A big kudos to the other coach and wrestler,” said Tim Brennan, assistant coach. “Without them it would not be possible.”

At practice, everyone gives their all and they expect the same from David.

“He brings energy, you tired, you look at David, you’re happy to push a little harder than you would if he were not here,” said Gianni Ghione, David’s teammate.

“We hold him to the same standards and we look for him to improve and work harder the next day,” a teammate said.

“They’re working harder, you’re sweating,” Eyewitness News said.

“Yes, I sweat because I work harder,” David said.

It has paid off.

“Emotionally, he’s very strong; he’s a tough kid, very sociable which is huge,” Brennan said.

You can bet, Middletown North is teaching their guys the same high standards, the life lessons that go beyond the mat.

Anyone who worries or doubts the kindness and the integrity of the next generation can just take a look at these young men.

 

Source:abc7ny.com