Posts Tagged ‘Down Syndrome’

Does this sound familiar to you?

Sunday, June 12th, 2011

Our little boy was born with Down Syndrome, which doesn’t bother us at all.  He’s just a little normal dude to us, with a chromosome upgrade. It just makes him even more special to us.  He’s our little super-hero … without the cape.

We do know that being born with a disability may be challenging for him.  As any loving parent, it is therefore our duty to protect and assist him throughout his life, making sure he gets all the same opportunities as any other kid.

Parents of kids with disabilities want, for obvious reasons, their kid to attend mainstream school.  They will develop in confidence and get friends and even be part of a gang.

So, because our little dude turns six this year, it means he can start mainstream school.  This is another proud moment in our life.  Our little dude is off to school.

Our oldest daughter is attending an Educate Together School, which apparently is meant to be excellent and very inclusive, meaning that it doesn’t care about religion or disabilities.  It will treat and educate kids equally … or so we thought.

The application / enrollment form for our son was submitted in January and we had the initial chats with the school about his needs.

It’s pretty obvious that he would need some level of support, called Special Needs Assistant (SNA), to help him during the school day, making sure that he does his duties, math, toilet stuff, lunch, etc.  In order to get an SNA, we needed to submit a few documents about his disability to then get him enrolled.

Keyword here.  He had to be enrolled in a school before the Principal can apply for the SNA.

We submitted the necessary assessment reports and waited for the school to contact us.

The contact happened after a recent visit to the US, where we met the principal and the Chairperson from the Board of Management.  Let me just say, it didn’t go as we expected.

Both the Principal and the Chairperson were reluctant to enroll our son due to his disability, using the excuse that he wouldn’t get an SNA – according to the school.  Please note, the principal can only apply for a SNA after he has been offered a placement!  How did they know he would not get an SNA?

Secondly, they didn’t like or accept the reports from the local health-board (HSE) psychologist which clearly stated that our son should go to a mainstream school.  The Principal didn’t think the assessment reports were completed.   However, if the assessment reports were reformulated, then she would give our son a place in the school.

Based on the Principal’s suggestion, the assessment reports were re-written and the psychologist wrote 3 letters to re-iterate her views and support that he should go to mainstream school – unfortunately the Board and Principal back-tracked on their promise!!

The next few weeks were spent arguing with the school, getting letters from the healthboard and contacting various support organisations.

Finally, we received a letter from the school and hoped it would be good news.  But no, the school denied our son a place in the school, because of his disability.

The school in question is Educate Together in Lucan – and this post was created from the following email we received here at My Special Needs.

Dear myspecialneeds.ie,

Please read and promote our story http://www.judgebrix.com/blog/2011/06/09/wrath/

Our son was not enrolled in school because of his ability, despite the HSE supporting us that he should be put in mainstream school.

The principal and BOM simply refused, and didn’t want to apply for SNA either!

Thanks

Monica & Mikkel

Another First for William Loughnane!

Sunday, March 20th, 2011

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A SPECIAL Olympic gold medallist has become the first person in the country with Down Syndrome to pass his driving test.

William Loughnane (26), from Clooney-Quin, Co Clare, got rid of his L plates after recently passing the theory and driving test.

His latest achievement has been hailed by Pat Clarke, the president of Down Syndrome Ireland.

Mr Clarke said that to the best of his knowledge William was the first person in Ireland with Down Syndrome to hold a full driving licence. “For people with Down Syndrome it shows that if they persevere they will get to where they want to get to,” he added.

William, who works in a Centra shop in Ennis, won two gold medals, three silver and two bronze for gymnastics at the 2003 Special Olympic games in Dublin. Four years later, he claimed six gold and one bronze medal in China.

His father Liam helped him with the principles of driving. “I showed him the ropes. He only started in November,” Liam said.

Irish Independent

More Special Needs Cuts!

Sunday, February 27th, 2011

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FURY erupted last night over a decision to deprive children with severe disabilities from getting a second full year of pre-schooling, the Irish Independent has learned.

The move, which will save less than €500,000 a year, will hit families of Down Syndrome children, those with autism and other severe disabilities.

Many had assumed their children could avail of a second year, but now their hopes have been dashed.

Instead, they have been given the option of a full year starting in September, with their children attending Monday to Friday, or splitting the provision over two years.

The INTO last night described the move as a “shocking and mean spirited” decision by the Government, which had promised as far back as 2002 to ensure early education services for children and prioritise children with disabilities.

The highly successful free Early Childhood Care and Education pre-school year began in January 2010. An overwhelming 94pc of eligible children are now participating in the scheme.

About 170 children with severe disabilities were allowed to avail of a second full year starting last September. They were approved on a case by case basis.

But Children’s Minister Barry Andrews‘ office has decided this will not be available to children starting in September this year.

A spokesman for the minister said the 170 children were allowed to enrol in the second year because the first free pre-school year was a “short” one”, having started in January 2010 and finishing in June.

“No child at any stage has ever been approved for two full years,” he told the Irish Independent.

Drastic

But the decision has angered many parents. “As parents, we will not sit on the fence on this. Our children are already facing sweeping reductions in services due to drastic cutbacks,” said Down Syndrome Dublin chairperson Miriam Masterson.

She said the decision could not even be considered a cost-saving measure, when these same people will, in later years, require a lot more help than if they had been given the best start from the outset.

Irish Preschool Play Association chief executive Irene Gunning said the decision was very disappointing as it had not been signalled in advance and parents had an expectation of a second year.

However, Fine Gael last night held out the prospect of reversing the decision. Fine Gael education spokesperson Fergus O’Dowd said the party was committed to spending €20m on a First Step programme to help disadvantaged pre-school children. He said this would include those with severe disabilities.

“A Republic is judged by the manner in which it treats its most vulnerable citizens,” Mr O’Dowd added.

– John Walshe Education Editor

Irish Independent 19th February 2011

Down Syndrome ” look at the person not the disability”

Sunday, September 26th, 2010

 

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Breaking barriers: Reporter Michael Gannon with his mother, May. Picture: Ronan Lang

When Declan Murphy moved away from his home in Waterford to go to Trinity College in Dublin, he knew his mum was worried about him. Declan (33) has Down Syndrome, but that may not have been the entire root of mum’s concern.

“Well, I am the youngest of the family,” says Declan. “I think she missed me.”

Declan is part of an independent-minded, articulate generation of Irish people who have grown up with Down Syndrome but are refusing to be defined by it.

Big into politics,” he is one of a group of young adults with Down Syndrome who have been lobbying politicians as part of their ‘My Opinion, My Vote’ campaign to reform national policies that would help people with DS to attain their work, life and educational goals.

“I asked them for easy-to-read information in simple language and large fonts so we can learn about our rights,” says Declan. “We are Irish citizens, yet we aren’t able to get the same rights as everyone else.”

May Gannon, counsellor and drama-therapist with Down Syndrome Ireland, says that when Declan and other members of the group put their views to politicians from every party in Dublin last March, the legislators were “blown away” by their presentation.

“What they had were people with Down Syndrome telling them that when they opened the door to politicians canvassing, the politicians would say ‘Is your mum and dad in?’ rather than looking for their vote.”

Orla Hannon, a 23-year-old woman with Down Syndrome from Sixmilebridge in Co Clare, says she felt “strong and confident” when she gave the same presentation in Budapest and in Rome.

“We want to empower people with disability to participate in the political process,” she says. “We want the right to get proper education, and get jobs.”

Orla is devoted to books — she reads every night — and would like to work in a library. Her international political canvassing has given her a taste for travel. “I wouldn’t mind going to Denmark,” she says.

In essence, these are adults with dreams, ambitions and opinions. May Gannon’s son Michael, for example, says that although his outgoing personality means he feels people see beyond his Down Syndrome, that equality must become the norm.

“People need to look at the person, not the disability,” he says.

When journalist and broadcaster Brendan O’Connor wrote movingly about the birth of his new baby daughter Mary — who has Down Syndrome — in the Sunday Independent more than a week ago, he made special note of a piece of advice given to himself and his wife Sarah to “remember always that Mary is our baby, one half of each of us, and not a member of some tribe of Down’s people, a membership that sets her apart from us”.

This is absolutely vital for everyone to understand — not just those close to someone with DS, says May.

“People with Down Syndrome are as different from each other as the families they come from,” she says. “As to their ability level — they sometimes live up or down to the expectations of people around them.”

Pat Dorgan has more than lived up to the expectations of his family. The 46-year-old from Cork won two medals for Ireland in table tennis at the 2007 Special Olympics World Games in China and subsequently featured in a national poster campaign for the sport. His brother, the poet Theo Dorgan, composed a poem called My Brother for a pre-Games gala.

His sister Angela calls Pat “the glue that holds the family together”. Pat and those high-achieving adults like him are changing the perception of what a person with Down Syndrome can do. It’s a welcome progression, says Angela, from the condescension of old.

“A phrase that used to drive us mad as kids was, ‘Ah sure, God help us’,” she recalls. “People would ask us if he took sugar in his tea. We’d say: ‘Why don’t you ask him?'”

Similarly, 19-year-old Roisin de Burca from Connemara attracted positive attention last year when she became one of the few people with Down Syndrome to complete a full Leaving Certificate — and she did all her subjects through Irish. She then completed a FETAC course in Business Administration at Galway IT.

“I felt proud of myself, something I can accomplish in life, something that belongs to me alone instead of the family,” Roisin said last June after she won Bank of Scotland student of the year.

“We have moved from a time when people considered that a person with Down Syndrome was ineducable,” says May.

“Research tells us that there is nothing that can be delivered in a special school that can’t be considered in a mainstream school, given the proper supports.”

Getting access to this support — special-needs assistants, access to visual learning materials, speech therapy etc — is a cause of worry, however.

Just this month, Andrew Boyle, whose daughter Zoe (7) has Down Syndrome, challenged Education Minister Mary Coughlan on the withdrawal of Zoe’s special-needs assistance hours from 25 to five a week.

Pat Clarke, CEO of Down Syndrome Ireland, says that most of the charity’s monies comes from fundraising initiatives like next month’s Honey Days.

As better medical care ensures that the average life expectancy of a person with Down Syndrome has increased dramatically, it has thrown up new long-term challenges in relation to accommodation, employment and living.

“Our expectations and the expectations of our children have moved on,” says Pat, whose son David (29) has Down Syndrome. “David’s out there in the community, he’s an excellent swimmer and has won a couple of medals for Ireland, he’s at Dundalk IT three days a week and works at Tesco. He has a blue belt in Taekwondo. He could live independently. We’re in the process of organising a housing association in our local area in Drogheda to do it.”

The fact that the one in every 600 babies born in Ireland with Down Syndrome can now expect an average life expectancy of anything between 55 to 65/70 years can be cheering and sobering at the same time.

Peter Gaw, founder of the Down Syndrome Centre, says: “You get the initial shock of the diagnosis and within hours you’re already thinking, ‘What’s going to happen when I’m not there?'”

Peter’s two youngest children, daughter Tara (11) and son Harrison (9), were both born with Down Syndrome. It is important, he thinks, that parents of children with Down Syndrome are given hope and told that “it’s not all doom and gloom”.

“You try to get back to as normal a life as you can,” says Peter. “My older two children are really good with the two young ones. We wouldn’t change our family.”

The Down Syndrome Centre now funds the country’s first Down Syndrome liaison nurse, who works out of the National Children’s Hospital in Tallaght. She reassures and informs parents when their baby is born with the condition, helping them get through what Sheila Campbell, Chief Executive of the centre, calls the “miasma” of confusion and hurt.

Beyond that, integration into mainstream schools is crucial, says May Gannon: “We might never have known a person with Down Syndrome growing up, whereas now the younger generation will tell you about Mary or Joe ‘who is in my class in school and loves A, B and C’.”

Down Syndrome Ireland (www.downsyndrome.ie) has 24 branches across the country. Their Boyne Valley Honey Days Campaign for October has pots of honey for sale for €2. www.downsyndromecentre.ie is a wonderful resource for people with DS and their families. They have also launched the first online charity dress shop with www.buymydress.ie

– Susan Daly

Irish Independent

Thoughts From the Middle of the Night

Monday, September 20th, 2010

Last week Brendan O Connor wrote an article in the Irish Sunday Independent about his experiences when his daughter Mary was born. Mary has Down Syndrome. It was a powerful piece – very raw- and I have been thinking about what he wrote all week. The article below is not unlike his – but just a few years on!

Thoughts From the Middle of the Night

When my son was born and I was told he had Down syndrome, I did not cry for a long time. But when I saw a girl walking hand in hand with her little brother to the viewing window of the hospital nursery, I could not hold back my tears. I knew my daughter would never walk with her little brother that way. I knew he would never experience the small pleasures of life I always took for granted.

In those minutes my heart was broken and I was overcome with sadness for both my children. Now, almost six years later, I am filled with pity for the misinformed, heartbroken woman who sat crying in that cold hospital corridor, without hopes, dreams, or fight in her. She was wrong about so many things. That part of me continues to be reeducated: I am grateful for every new lesson I learn.

I am thankful to that woman. She found she did have some fight in her. She was not the first mother to fall in love with her newly-diagnosed child. She learned of brave and stubborn mothers who put themselves forward in the media to spread a message of hope. She let the memories of those mothers stir her into action. I shall always revere the mothers and fathers who reached out a hand, and who built a foundation of support, information, and resources for women like me to draw upon. What they did for their children transformed my son’s life. They continue, still looking forward, always reaching back to help others.

I still reach back to the woman I was. I hold her gently and wish that in her grief she could hear me. “It’s not like that. Please don’t lose yourself in that sadness. Hold on, wait and see. So much of that grief is over things that are just not true.” I know she has to sit there crying, and I don’t know how long. I will wait with her and be a friend. My son will be six years old in a month. His sister is seven and a half. When they are not arguing ferociously or ignoring one another, as siblings do, they are the best of friends. They help one another scheme, and protect each other from harm. Both have argued seriously how life for the whole family would be better if the other disappeared, leaving an “only child.” Each misses the other when they are separated overnight. I rarely think about the sister and brother walking toward the nursery viewing window, but sometimes when I see my two walking hand in hand down the beach or up a hiking trail, I think of the poor, sad woman I was that day.

I can’t imagine life without my son. Sometimes when he barrels into my bedroom early Saturday morning to tell me a great cartoon is on, I wonder what life would be like without little boys. But I get up, and find he has quite good taste in cartoons. I think of him in his preschool days, chin raised in pride over some fabulous work of art, like the turkey he pasted up when he was three. I remember him seeing his good buddy from class, Terrell, at a school carnival, and how their eyes met. They squealed in unison and ran to one another like sweethearts in a perfume commercial.

I enjoy the story his teacher relayed to me about how, during a cookie-baking class, he slyly nibbled his chocolate chips instead of saving them for the cookie. I am glad every day to have this son. The world is a better place with him in it. My son is not a Down Syndrome “superstar,” but I wanted him to have the experience of a regular kindergarten. He loves school and has a wonderful teacher. His classmates are charming and funny and bright. But I was afraid of their parents. My son has missed some fine opportunities because many people are as inexperienced and uninformed as I was six years ago. I believe he needs an edge before he can participate successfully in mainstream activities, and that edge is casual acceptance. Last night was parent night at my son’s kindergarten class. I was overwhelmed by the relaxed but purposeful way different parents let me know that they accept my son simply as a child in the kindergarten class. Their hands reach back to comfort the heartbroken woman in the hospital corridor. They comfort her in ways that I cannot. I thank every person who has brought us all this far. Thank you so much.

 

Pamela Wilson
BellaOnline’s Special Needs Children Editor

The Class of 2010!

Saturday, July 24th, 2010

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Nick Lanzi’s parents, Carolyn and Barry Lanzi, help their son prepare for graduation from Vestavia Hills High School Thursday. Nick Lanzi is among several students with special needs graduating from area high schools this spring after years in inclusive settings.(The Birmingham News / Joe Songer)

Don’t tell Nick Lanzi what he doesn’t know.

Don’t tell the new Vestavia Hills High School graduate what he can’t know.Because he knows better.

When doctors diagnosed Lanzi with Down syndrome when he was just a few days old, they told his parents he would never have intelligence surpassing that of a 3-year-old.

But when his 11th-grade American-history teacher passed him a copy of a test made specifically for “special needs” students, he asked for a “real” test instead.

He took it. He made a 96, the highest grade in the class. He made his parents, his teacher and everybody in the class proud.

Lanzi knows he is different. He just knows a different kind of different.

Lanzi, 19, is part of the first generation of special-needs students, including many graduating this spring, who have been taught in regular classrooms their entire time in school. Inclusion is a practice in which mentally or physically disabled students spend most or all of their time learning alongside typical students.

“Inclusion works best when you have a good team of administrators, special educators, good accepting classroom teachers and good peers,” said Carolyn Lanzi, Nick Lanzi’s mother. “He has benefited so much from inclusion, as much from the socialization as the academics. I’m not going to say we haven’t had stumbling blocks, but the parent has to be the advocate.”

Inclusion is a still-growing concept — one that’s been around since the 1970s, but became the norm only in the mid-1990s, advocates say. Research has shown that most physically and mentally disabled students do better academically and socially when with peers. Segregating a child from a regular classroom, research shows, may do nothing but harm the child’s self-esteem and hinder the learning process.

Enhanced settings

Advocates contend that children with disabilities can be successfully educated in regular classroom settings if the right aides and supplemental services are provided.

“There are much higher expectations and less assumptions when a special-needs child is in a regular classroom,” said Susan Ellis, community living coordinator for The Arc of Shelby County. Ellis’ own son, Matthew, has Down syndrome. “Certainly the social skills that come from inclusion are important as well. A lack of social skills is what prevents adults with severe disabilities from being successful.”

Special-needs students are placed in what is called an Individualized Education Program. It includes a written statement of special education and related services the child will need in order to be properly educated, as well as any modifications to the regular curriculum.

The Individuals With Disabilities Education Act, as amended in 2004, does not require inclusion. Instead, the law requires that children with disabilities be educated in the “least restrictive environment appropriate” to meet their “unique needs.”

Inclusion, advocates say, allows students with physical and mental disabilities to experience all aspects of regular school life.

If Lanzi is a measure, the process works.

Everyone at Vestavia Hills, it seems, knows Lanzi. During his four years of high school, he would walk the halls between classes high-fiving friends. He was inducted into the Student Government Association and was named Most Admired by his peers for Who’s Who among his senior class.

The story is much the same for Whitley Means Ware, a 20-year-old with Down syndrome who graduated from Carver High School on Tuesday night.

Not only was she in the regular classroom, allowing her to make friends and learn from her peers, but she was on the varsity cheerleading squad the last two years of high school.

“It helped a lot with her social skills,” said her mother, Brenda Ware. “She is so outgoing anyway, but being around others helped her with her communication skills. Everybody from the teachers to the custodians to the cafeteria workers know her and love her.”

That’s not to say that inclusion always works. It is up to parents and school administrators whether they want their child in a regular classroom setting or to be segregated in a special-education classroom. Many special-needs children do both.

Just ‘there in body’

Still, many schools simply place special-needs children in the back of a regular classroom and give them “baby work,” says Deborah Mattison, a Birmingham lawyer who specializes in special education and disabilities.

“A lot of times, kids can be dumped into a classroom with an aide, and the aide does all the work for them,” she said. “That’s not the way it’s supposed to work. It’s about redesigning the curriculum to make it more functional for the child. Sometimes the child is there in body but isn’t really part of the class.”

When implemented correctly, she said, inclusion works. The social skills alone, she said, are invaluable.

“Oftentimes when these kids leave school, the only people who hang out with them are family members and people who are paid to be with them,” she said. “Inclusion allows these children to make friends, and that’s important.”

Special education has come a long way since the federal Education for All Handicapped Children Act was passed in 1975. Prior to that law, students with special needs were frequently not allowed to enroll in public school. The law was reauthorized over the years and was renamed the Individuals with Disabilities Education Act.

Segregating special-needs children into separate classrooms or schools was common then, Ellis said. But that began to change in the 1990s, when research began showing benefits to inclusion.

While there still are children in segregated classrooms, inclusion is becoming the norm, especially since the No Child Left Behind law was enacted in 2001, Mattison said.

That law states that all children must be educated by highly qualified teachers and requires all students — regardless of their disabilities — to meet state goals on standardized tests.

That caused school systems throughout the country to turn their attention to children with disabilities, by developing and implementing strategies to move those students forward academically.

“Education has come so far,” Lanzi said, thankful for the advocates who she says paved the way for her son. “Unless they’re given the opportunity, you don’t know what they’re capable of. You can’t just close the door on them.”