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Tuesday, June 30, 2009

Luke Deserves So Much More

Luke Deserves So Much More

Stephen Drill - Article from Sunday Sun

June 21, 2009 10:26am

LUKE Modra spends 20 hours a day locked in a spartan room. He's alone. His guards pass his food through the door.

He has a TV in his room, but no remote control.

For Luke, simple luxuries such as toasters or a kettle are banned in the suburban Melbourne house that has become his prison.

Luke has never broken the law. He has never been charged or convicted of any wrongdoing.

But he has been given a life sentence - autism, a complex condition of developmental disorders that affect communication and social skills.

"Everybody deserves somebody to love, something to look forward to. Luke doesn't have that now," his mother, Ellen, said.

Luke, 20, is considered one of Victoria's most severe autistic cases. So bad are his symptoms that his heartbroken parents have been unable to care for him at home for the past five years. Because of his violent tendencies, he now lives in a Department of Human Services residential property. He shuns human contact and even his carers are frightened to be in the same room with him.

And his devoted parents are desperate for help. While Mark and Ellen acknowledge they are unable to care for Luke, they argue the care provided by the DHS is not right for their boy. "He has almost no interaction with other human beings," Mr Modra said. "It's like living in a private hell." Mr Modra said Luke spent all day tearing up his clothes because he was so bored. "But if you were in there, you would be doing the same thing," his father said.

Meredith Ward, from the Victorian advocacy body Autism Family Support Association, agrees.She said she had not heard of any other case in which an autistic person was cared for in the manner of Luke Modra. Ms Ward has seen Luke's accommodation, describing it as a jail. "For an adolescent, the DHS should be able to come up with some other support model," Ms Ward said. "He has no quality of life - and neither does his family."

Ellen and Mark are fighting for their son's dignity and are determined to restore some joy to his life. They say he deserves that. Mrs Modra remembers the joy she felt bringing her much-longed for baby boy home from Waverley Hospital in 1988. She considered she had achieved life's ultimate trifecta: the perfect baby, the loving husband and the sprawling family home.

Mrs Modra, now 50, left her job as a medical scientist at the Peter MacCallum Cancer Institute to be a stay-at-home mother. Husband Mark was earning a comfortable wage as an engineer and she said life was near perfect. 'HOW could I be so lucky?" she said this week.

It was a mother's instinct that first made Mrs Modra suspect something was wrong. She said the family celebrated the joy of Luke's first smile, his first words, his first steps and all the milestones of a child's life. But there was a nagging doubt in his mother's mind.

The maternal health nurse told her she had nothing to worry about; Luke was doing well for his age. Mrs Modra said she noticed that at family birthday parties Luke never seemed to mix with his many cousins. "If they were playing in one room, he may just sit alone in another," she said.

Mrs Modra raised her concerns with her siblings, who also had young children. She also talked to other mothers about Luke's shyness. "But they would say, without realising Luke had a disability, that he was talkative," she said. "They would give as an example that he could come into a room and tell you the name of nearly every piece of furniture."

Mrs Modra shared her concerns with doctors, but said they assured her all was well.

When Luke was 2 1/2, the Modras welcomed another baby, daughter Hannah. Two years later - on a Friday in 1993 - the Modras were called to the Royal Children's Hospital. A doctor gave them four pieces of paper and left the room. On the final page, buried in almost the last paragraph, was the word which shattered their lives. Luke was autistic.

"It was 5.30pm and the doctor waltzed back in and suggested we call some support services to discuss the condition," Mrs Modra said. "He then showed us the door." Ellen and Mark went home in tears. Later, Luke went to Essex Heights Primary School in Mt Waverley, which under principal June McDonald was renowned for its inclusive program for children with disabilities.

But in 2000, Luke was moved to Bulleen Heights Special School and his parents say his violent episodes worsened. Ellen, who was looking after Luke and four other children at home on her own, would drop off her oldest son at the school gate where she said he would be met by up to six men who would "look at home on the Collingwood back line".

She said they would frog march him into his "classroom", an isolated area fenced off from the other students. "The school suggested Luke go on medication, mild sedatives to keep him a little bit calmer, a little bit easier to control," Mrs Modra said. Reluctantly, the Modras agreed, but the school continually asked for dosage increases so that Luke could be kept under control. Luke's violence became worse.

The shattered parents said the medication turned their son, who had been able to read, write and communicate, into a "zombie". "His eyes would roll back in his head, his tongue became wooden and he would go into spasms," Mr Modra said. After seeking further advice, Luke was taken off medication. He remains non-medicated.

After five years at the special school, Luke was told he was no longer welcome. His teachers said the 15-year-old was too dangerous to be in the company of children as young as eight. At the same time, respite carers said he was too hard to handle.

Finally, breaking under the stress of caring for Luke at home without respite care, Mrs Modra marched into a DHS office and demanded a short respite. Luke has not been home since, remaining in the care of the DHS.

And on the eve of his 21st birthday, his parents revealed that he spends up to 20 hours a day in solitary confinement in a "community based" DHS property. They say his carers will not be in the same room as him and that they deliver his food through the door.

"When Luke goes out, he has to walk through a specially designed cage so he and his carers never share the same space," his father said. Even DHS insiders, who asked not to be named, said Luke's carers were unable to handle him. "They are really good at keeping him in isolation," a source said.

His carers say they can't be in the same room as the strong young man because he can be violent. Luke's family admits he is no angel, but says he deserves better. "There has to be a better, more humane way to deal with people with severe autism rather than just locking them up and throwing away the key," Mrs Modra said. DHS spokesman Brendan Ryan said if Luke's parents had concerns, they were "happy to discuss them".

BUT Mr Ryan said the DHS was satisfied with Luke's level of care. "He is receiving a wide and intensive level of care," he said. Mr Ryan said there were staff at Luke's house 24 hours a day.Speech pathologists were also provided, he said.

Mr and Mrs Modra say they have been offered $350,000 a year to pay for carers if they take Luke home. That is estimated to be tens of thousands of dollars less than the cost of keeping Luke in DHS care.

His parents have bought a flat for Luke next to their house and Mrs Modra has returned to work to help pay the mortgage. But the couple say they cannot yet have Luke at home because they are still trying to cope with the tragic death of their 17-year-old daughter, Hannah, in January.

In a diary found days after her death, one of Hannah's last wishes was that Luke have proper care. "Her dream was to one day get married to a fantastic husband who would ride bikes and go on hikes with Luke, that was in her diary," Ellen said. "She died two days after she wrote that."

Ellen said Hannah had a close relationship with her brother. "Hannah was the sort of girl who would always come to see Luke," she said. "She saw the worst of it. She really hated it."

The Modras are regular churchgoers and said that faith had given them hope. "What we have always wanted is for Luke to be a valued member of society," Mrs Modra said.

"I just want kids like Luke to be supported and respected and to live happy and productive lives."

Tuesday, June 23, 2009

Thinking Positively: How Some Characteristics of ADHD Can be Adaptive and Accepted in the Classroom


Are ADHD kids annoying? This is a question that I ask in my seminars. Depending on the course and the teacher comments range from "oh yea" , "Sometimes", "Not Really" I then tell my participants that what ever they think they are they are" Our intervention is typically guided by our perception of the child or student. How can behaviours that are displayed by some of our ADHD kids be accepted in the classroom?
Sherman, Rasmussen and Baydala note that children who are ADHD respond to salient or novel stimuli and become easily distracted. Thus attention problems result in decreasing ability to attend to tasks that require sustained attention.
Some strategies that may help children read and write
  • paraphrasing
  • limiting distractions
  • scanning for headings
  • graphic organizers - flow charts, models of written work, and aiding in self-editing
The authors found that strategies helpful for ADHD students are beneficial for all students.

Thinking differently can change how we intervene with our ADHD children. Rather than always telling them to "Be quiet" "Sit down" Use these as their strengths not their deficits. If the child is always talking rather than tell them to stop actually tell them you love how good they are at communicating. Use the problem solving technique and let them know your concerns."I like it when you talk but when you are talking and when I am talking no one else can hear us. What can we do to make sure that only one person speaks at a time?"
Give them the responsiblity to solve the problem rather than trying to coerce them to stop and risk escalation.
Sherman, Rasmussen and Baydala note that children who are exceptional with music, art, sport exhibit those behaviours that have been labeled negative or non-compliant. For instance energetic, impulsive, creative, impatient, distractable are labels used in a negative manner but when examined using a positive mind set they take on a whole different meaning.
Do academic acheivements define who our children are? Are there characteristics that are beneficial in other environments but not applicable to school? Does this make children failures? Maybe it is the system that is failing these children not the children failing within the system!

Thursday, June 18, 2009

People With Autism Better at Problem Solving


A new study done by Harvard and University of Montreal compared the abilty of 15 Autistics and 18 non-autistics in completing the Raven's Standard Progressive Matrices (RSPM) - a test that measures hypothesis-testing, problem-solving and learning skills.

"While both groups performed RSPM test with equal accuracy, the autistic group responded more quickly and appeared to use perceptual regions of the brain to accelerate problem-solving," says lead author Isabelle Soulières, a post-doctoral fellow at Harvard University who completed the experiment at the Université de Montréal. Critics of the study said that autistic people would not be able to complete the test because of its complexity. The study showed that Autistics could complete the test as efficiently and had more highly developed perception than non-Autistics.

"This study builds on our previous findings and should help educators capitalize on the intellectual abilities of autistics," says senior researcher Laurent Mottron, the new Marcel & Rolande Gosselin Research Chair in Autism Cognitive Neuroscience of the Université de Montréal and psychiatry professor. "The limits of autistics should constantly be pushed and their educational materials should never be simplified." The researchers hypothesized that Autistics would be able to complete the complex test and surpassed their expectations.

Never underestimate a child because of their diagnosis!

Saturday, June 13, 2009

Building A Solid Foundation for School - A Communities Approach


The Australian Research Alliance for Children and Youth presented a paper titled "Building a Solid Foundation for School - A Communities Approach. The paper argues that there are more factors involved in school readiness than just the child's ability or maturity level. Readiness for school involves a partnership between the family, child, school, the community and the services provided within that community. The integration or partnership of these components build a solid foundation that caters for the social, emotional, physical and cognitive needs of all those involved in the partnership.

The child can no longer be looked at as a bystander to their own development and involvement. The authors note that "The agentic child is defined as a social actor who participates in his/her life and co-constructs education with adults and peers [2]. It is the collaboration between the child and the adults that makes for a successful process. Indeed, recent policies focusing on
young children assert this view." Children are shaped by the process of involvement in the experiences they encounter. They are not passive participants. Therefore the collaborative partners must work together to provide the child with positive experiences as they enter school or transition from one school to another. "The process of starting school should not be sur-rounded by loss and grief; rather it should be a time of optimism and excitement, as solid foundations, which have been built over time, support the transition to a new way of being – that of a school student."

To improve outcomes for children we must work together as a community to nurture the needs of the child. Providing quality resources and programming for the child and the family throughout their entire school life is required to promote a healthy lifestyle as an adult. Family daycares can provide early literacy and numeracy curriculum and information to parents as more children are in daycare from an early age.

Parents and children can become involved in community organized events that showcase important issues like safety, hygiene, nutrition, how to look after their body, traffic safety and many more. These programs in the community can be beneficial for child, parents and the agencies offering the event.

The paper outlines many strategies that schools can implement as children transition into school: play based learning, welcoming events, rest breaks and more.

This information is extremely important to consider for our children with disabilities as the community becomes an outlet for services to aid in the transition of children into a suitable school environment. The school also needs to look at the child's strengths, interests, ability level in order to implement a program that is based in the individual child.

The paper encourages communities to become more involved as the education of our children becomes more complex. The collaboration of partnerships within the community is paramount in giving children the most engaging and positive experiences to enhance life long learning.

Monday, June 1, 2009

Talking to Your Kids About Their Abilities

Tito Rajarshi Mukhopadhyay is a remarkable young man from south India with a special talent. Severely autistic and nearly non-verbal, Tito can communicate his thoughts and feelings through remarkable prose and poetry - written in fluent English. Tito's view of the world provides an extraordinary opportunity to explore the hidden world of autism.

Children with a disability know they are different in some way to their peers but sometimes have difficulty expressing their feelings around these issues. They may present behaviour that seems aggressive or non-compliant as a way to communicate their sadness or fear around being different than their peers. Some important things that may help:

1. Adults sometimes get very busy. Remember to take the time to sit down and talk with your kids not at them. Try to discuss things that may be bothering them.

2. Actively listen. Acknowledge their feelings. If your kids say that they hate being different. Our first reaction is to say something along the lines of: "Sam, your not so different than other people your age" or "Sam it's ok to be different, everyone is different" What happens is we as adults move into the mode of not acknowledging their actual feelings and we immediately try to solve the problem or make it better. Another approach is "Sam, you hate feeling different? What's going on?" or "I can see that your upset about feeling different, what is happening that you feel different?"

3. As children begin to communicate with you about their feelings you are actually teaching them by acknowledging their feelings how to problem solve on their own. The potential of any child unless they are severely brain damaged cannot be predetermined. As we make assumptions about what someone is capable of doing because they have been diagnosed with a particular disorder may in fact become a self fulfilling prophecy. There are many people out there who have accomplished things beyond anyone's expectations even their own.

4. When we have conversations with our children it is so important to help guide them but not overpower them as they need to become capable of making their own decisions. Some kids may seem like they are not able to make decisions for themselves and we try to "persuade" them by exerting control or force. This rarely works with positive outcomes and is based in "power over" punitive philosophies.

5. Caregivers, teachers do need to ascertain a baseline of skills and work toward their strengths while working on their deficits as well. Sometimes we concentrate way too much on what they can't do rather than what they can.

6. A reader of these posts asked how they would tell their older child that he will not be able to drive. It might be important to talk to this young man about his feelings as he I'm sure wants to be like all the rest of the young men his age. Get down to the emotional baseline and see what is acutally going on for him as it may become more about the emotion surrounding his idea that he may not be able to drive. Use the collaborative problem solving method that encourages acknowledgement and solutions based on Dr. Ross Greene. See previous posts.

The following people are truly inspirational:

1. Sophie Delezio: http://news.ninemsn.com.au/article.aspx?id=98939
2. Eric Weihenmayer: http://www.touchthetop.com/
3. Famous people with Autism/Aspergers;
  • Gary Numan, British singer and songwriter [15]
  • Dawn Prince-Hughes, PhD, primate anthropologist, ethologist, and author of Songs for the Gorilla Nation [16]
  • Judy Singer, Australian disability rights activist [17]
  • Vernon L. Smith, Nobel Laureate in Economics [18]
  • Satoshi Tajiri, creator of Pokémon [19]
  • Daniel Tammet, British autistic savant, believed to have Asperger Syndrome [20]
  • Alonzo Clemons, American clay sculptor [31]
  • Tony DeBlois, blind American musician [32]
  • Leslie Lemke, blind American musician [33]
  • Jonathan Lerman, American artist [34]
  • Thristan Mendoza, Filipino marimba prodigy [35]
  • Jerry Newport is an author, savant, and has Asperger's. His wife, Mary Newport, is also a savant on the autistic spectrum [36]
  • Derek Paravicini, blind British musician [37]
  • James Henry Pullen, gifted British carpenter [38]
  • Matt Savage, U.S. autistic jazz prodigy [39]
  • Henriett Seth-F., Hungarian autistic savant, poet, writer and artist [40]
  • Tito Mukhopadhyay, author, poet and philosopher [41]
  • Taken from: http://autism.lovetoknow.com/Famous_People_with_Autism

Bullying: Making School a Safe Place to Learn

                                                         FREE RESOURCES A number of children and families are being affected by bullying...