Choice in the Cold Light of Day: USA Today Column on Down Syndrome Screening

There is a column in USA Today from a couple of days ago by Dr. Brian Skotko, concerning the implications of the new blood test screening for Down syndrome that will be available at 10 weeks of pregnancy.

The article speculates about what may happen now that a far less invasive test for Down syndrome will be available: "Will America cull people with Down syndrome?"

Dr. Skotko writes that he and his team surveyed over 3,000 families who have a family member with Down syndrome to find out how they view the effect this condition has had on their lives. Surprisingly (or not!), the results were massively positive, with 99% of respondents answering that they truly love their DS children and even 88% of siblings responding that having DS in their family has made them better people.

Besides looking at the expressed satisfaction (for lack of a better word) of DS families, Dr. Skotko also mentions the achievements of some people with Down syndrome.

And he goes on to say, "I care deeply that patients receive accurate, up-to-date, balanced information so they can make informed decisions. Yet, as a physician, I am not in the business of telling expectant couples what pregnancy decisions they should be making when their fetus has Down syndrome. That is their decision."

Very difficult decisions indeed.

What Dr. Skotko does not address is the overall impact on humanity that could result from a sharp reduction in DS births. Do we really want to mess around with the essence of humanity by altering the balance and diversity that has existed for tens of thousands of years?  Do we have the wisdom that is needed to alter the nature of our species? Some may say, yes - many would say, clearly not.

But, equally clearly, the impossibility of imposing responsibility for the societal impact of these decisions on pregnant women and their spouses.

And don't forget, it doesn't end with Down syndrome. Who knows what possibilities could be opened up with advances in genetics and medicine, even in the short term, never mind in a few decades? This is a conversation that is very large and yet as intimate and personal as there is.

I am afraid that time and science may not allow us to adequately weigh or understand the consequences.

Person with Down's Syndrome Wins Employee of the Year

Awesome story!

This type of news really bodes well for the prospects of more disabled people taking a meaningful roll in the workforce.

Wow! 8 awesome art ideas for special needs kids from an art therapist

A little cramped for time here so just going to have to make do with a link!

Shirking, I know!

These ideas are from the really great blog, Love That Max.

How do You Find a Babysitter for Your Special Needs Child?

Finding a good, reliable babysitter is never easy at the best of times.

When you have kids with special needs, this challenge is amped up several-fold.


Paula Shuck over at the Thrifty Mommas Tips blog just put up a post about this yesterday and her thoughts ring true, that's for sure.

The most common solutions for this problem usually come from within the family - either older siblings or grandparents. However many people do not have the luxury of having these options close at hand. Even when you do, many special needs children present special challenges that go beyond the normal capabilities of a grandma or big brother...

The CLSC often has a list of babysitters you can refer to, however this is offered as information only - these babysitters are not verified or recommended in any way. And very few of them would be capable of handling kids with special needs.

Another solution for some people could be to take advantage of the respite services offered by ARSDI. Their facilities, such as the Betournay Centre in St. Lambert, do look after special needs children and even have the option of weekend respites. So this is a possibility that could be followed up with the ARSDI directly.

As a way of opening up other options for families in the Montreal south shore area, RAPID (Resources for the Anglophone Populations with Intellectual Disabilities) is going to be facilitating an adapted babysitting course for babysitting children with special needs, on or about the last weekend of November. Stay tuned for the details, which will be announced soon

"A Portrait of Autism" - Amazing job of digital painting on tablet

Sportball Instruction Coming Next Week at REACH

An interesting new activity called "sportball" will be coming to REACH School this coming Wednesday, Oct. 12.


Children from several classes will be involved and their parents have received a letter.

Sportball is a relatively new method of introducing children to 8 ball sports: soccer, hockey, basketball, baseball, volleyball, tennis, golf and football. The objectives of the REACH initiative are fitness, cooperation and tracking.

For more information, please see www.sportball.ca.

"Jersey Shore" (??) Comes to REACH St. Lambert, Fri. Sept. 16

You might call this a heads-up ~ although there may be many jerseys seen on the south shore tomorrow, no, it is not Jersey Shore.

REACH School kicked off the year with a corn roast and its annual meeting, both over the past week, giving parents plenty of opportunity to see the school and classrooms and meet with their childrens' teachers, the staff and the new school principal.

Tomorrow the beginning-of-the-year fun stuff continues, as students will be wearing their favourite sports jerseys  in recognition of National Jersey Day, which is an offshoot of Sports Day in Canada.

Next Friday, Sept 23, will be the school's Terry Fox Run/Walk. And the following week REACH will be going apple picking!

Plenty of energy and excitement around the school as usual this year and, as always, the students are so anxious to embrace learning in the secure and supportive environment provided at REACH!

Special Olympics: Overview of Programs on the Montreal South Shore

There are several Special Olympics programs in different sports happening in several communities around the Montreal south shore / Monteregie area.

There are many summer and winter sports offered and in general both francophone and anglophone athletes are involved.


Following is an overview of what is presently available:

Track & field on Monday night 7:00 pm in St.Lambert

Soccer on Thursday at Boucherville and Saturday in Greenfield Park

Swimming on Wednesday at Boucherville.

Floor hockey and basketball: starting in September

In the winter there will be...

Alpine skiing Monday night at St. Bruno

Cross country skiing on Saturdays at St. Bruno

Snowshoeing Wednesday nights in Longueuil

Special Olympics volunteers and organizers are hoping to meet you soon and talk about the special olympic movement...a great place to be...!

Founded in 1981, Special Olympics Québec (SOQ) offers over 4,100 special athletes with training and competition programs in 14 official sports and 3 in development designed to increase their well-being, self-sufficiency, self-esteem and social integration.

Rapid is hoping to have a representative from the Special Olympics attend a meeting soon to discuss their programs on the south shore.

For further information or details on the events listed above, please email the Special Olympics contact for the south shore at lajemmerais-vr@osqsectionsoq.qc.ca.

The contact for the Southwest / Chateauguay region is chateauguay@osqsectionsoq.qc.ca.

ARSDI Program Overview as of September 2011

ARSDI is the French acronym for the South Shore Association for the Intellectually Handicapped. This organization serves the south shore of Montreal area with a variety of services from their offices and respite centre located in St. Lambert at the addresses below.

ARTS AND CRAFTS

(ADULT PROGRAM)

Teacher: Sandra Beauregard

10 weeks

Cost: $100

Saturdays: 10 – 12

MUSIC THERAPY

(ADULT PROGRAM)

Teacher: Helen Gaudreau

10 weeks

Cost: $100

Wednesdays: 6:30 - 7:30 P.M.

GENTLE GYM

(ADULT PROGRAM)

Teacher: Jaime Moar

10 weeks

Cost: $100

Tuesdays: 6:30 - 8 P.M.

THE HANG OUT (in english)

Monitors: Chrissy and Nathan

10 weeks

Cost: $100

Every second Thursday: 6:30 - 9 P.M.

For young adults, ages 16 - 30.

RESPITE

(CHILD PROGRAM)

We offer a 24-48 hour respite

service every weekend throughout

the length of the year, as well as

two 10 day long respite periods in

march and july.

AFTER SCHOOL PROGRAM

(CHILD PROGRAM)

We offer an after school (2:30-6)

program throughout the school

year, and we are open on

pedagogical holidays (7:30-6).

DAY CAMP

(CHILD PROGRAM)

Every summer, we offer a day

camp for childrien, that is 8 weeks

long. The day begins at 9 and ends

at 4, with a daycare service from

7-9 and 4-6.

ADULT SLEEPOVER CAMP

A camp offered off grounds, runs

every summer for 3 weeks.

Ages 21 and up.

ADULT PROGRAMS

ARSDI courses are offered at 240

St. Laurent, St-Lambert

Winter and Fall

Qualified Teachers

Attentive and Bilingual

CHILD PROGRAMS

After school program

Day Camp

and Respite service

offered at

80 Bétournay, St-lambert.

For Information Please Call the ARSDI: 450-671-5344

Website: http://www.arsdi.org/

Parrainage Civique Champlain Releases Fall Program

(Thanks to one of our readers for passing this info along)

There is always a link to Parrainage Civique Champlain's website on the sidebar also. The website is in French only however the organization has indicated an interest in offering services to anglophones.

Programmation d’automne

Bonjour chers parents,

L’été tirant à sa fin, nous profitons de l’occasion pour vous faire part de notre programmation d’automne. Nous vous demandons de réserver vos places le plus rapidement possible puisqu’elles sont limitées.

Soirées gardiennage

Les temps de répit sont rares? Nous vous offrons une soirée de congé parental en amusant vos jeunes au Parrainage civique! Pour la session d’automne, nous vous proposons deux dates soit :

*Le vendredi 30 septembre, de 18h à 22h

*Le vendredi 4 novembre, de 18h à 22h.

Coût par jeune, par soirée, 20$.

Cafés-rencontre

Puisque pour la deuxième année consécutive, les cafés du mardi ont été populaires, nous proposons aux parents deux dates à l’automne ou nous ferons un petit brunch pour se rencontrer et jaser, en tout simplicité. Encore une fois, réservez vos places dès que possible!

*Le dimanche 16 octobre, de 10h à 12h,

*Le dimanche 20 novembre, de 10h à 12h.

À noter que vos jeunes sont aussi les bienvenus! Une activité sera planifiée pour eux pendant que vous relaxez!

Another View on Autism Treatment Methodologies

As anyone with any interest in the subject is aware, ABA has become a very widely used and accepted method for treatment of autism spectrum disorders. Many jurisdictions have created substantial budgets to provide ABA early intervention for increasing numbers of children. Nonetheless, the success of the treatment does vary among patients, as the following suggests:

 In a 2009 review of 11 studies published from 1987–2007, the researchers wrote "there is strong evidence that EIBI (a type of ABA) is effective for some, but not all, children with autism spectrum disorders, and there is wide variability in response to treatment." Furthermore, any improvements are likely to be greatest in the first year of intervention.^[91] 

So there is definitely always room to look at alternatives to ABA, especially in cases where its results have appeared to be limited.  

One such alternative out there is the "Son-Rise" Program offered by the Autism Treatment Center of America. There is an interesting comparison of the two approaches on the link. According to their material, Son-Rise's strategy builds on relationships whereas ABA addresses behaviors more directly.

Son-Rise was the title of a book written in the '70s by Barry Kaufman, the father of an autistic boy. Kaufman and his wife Samahria went on to found the Autism Treatment Center of America and the techniques they use are based on what they developed to treat their autistic son.

Hyperbaric Therapy Expensive But Many Believe it is Effective

Hyperbaric therapy is a treatment that is available, with multiple claims regarding its effectiveness in a variety of special needs situations.

Many believe it is effective.

The claims of some private clinics offering the treatment are quite extensive.

They say it is useful in treating ADD, autism, cerebral palsy, Down syndrome (and trisomy 13), dysphasia, fetal alcohol syndrome,  multiple sclerosis, Parkinson's, and stroke, among other diseases and conditions.

Yet, it is not covered by Medicare in Quebec.

There is plenty of anecdotal evidence to suggest that the treatment at least has a temporary effect on patients.

Hyperbaric therapy was looked at in a recent news story on CTV News.  They say that a round of 40 treatments can cost $5,000 in Quebec and that some parents have noticed improvements and have returned to continue with more treatments. Obviously there is little way of knowing whether these improvements would have occurred without the treatment. Neither is it certain how permanent they will be.

In the U.S., hyperbaric therapy is indicated for 14 applications with medicare coverage, mostly physical healing enhancement situations such as skin grafts, etc.

One small double-blind study in 2009 showed hyperbaric therapy to be effective for treating certain aspects of autism, particularly social interaction and eye contact.

However a randomized study for the Center for Autism Related Disorders (CARD) found that the therapy had no effect. (Doreen Granpeesheh, Jonathan Tarbox, Dennis R. Dixon, Arthur E. Wilke, Michael S. Allen (2009). The lead researcher is also the founder of CARD.

Mike Reid Memorial Softball Tournament this Weekend

The tournament begins tomorrow evening in Greenfield Park and continues right through the weekend. In the past there have been over 30 mens teams and a good number of womens teams as well.

The tournament is held annually in the memory of Mike Reid, who grew up in Greenfield Park and died in 1984 at age 20 after a courageous battle with Duschenne Muscular Dystrophy. Hundreds of thousands of dollars have been raised for charity over the years.

Here's the link to their Facebook group.

Quebec Releases Interactive IEP Tool

The Quebec Ministry of Education, Leisure and Sport (MELS) has released an interactive IEP (Individualized Educational Plan) tool that can be used in any school in Quebec.

IEPs are used to help describe and organize the support measures and personalized follow-up that are necessary to help students with special needs progress in their schooling and to foster their success.

The benefits of using this standardized IEP according to MELS, include

• a common understanding (especially by parents) of the individualized education plan
• closer cooperation among personnel
• a focus on the process and the student's needs
• better preparation of personnel
• rapid transfer of information between school boards
• easier management of a school's individualized education plans
• archiving of and ready access to any individualized education plans developed for a given student
• updating of common definitions of the needs, capacities and objectives recorded in the individualized education plan

Many of those points seems to describe simply the benefits of IEPs.

Team Canada Will Participate in Abilympics for the First Time this Year in Seoul

The International Abilympics is a world-wide competition that showcases vocational skills of persons with disabilities in skilled trade and technology areas.

The games have taken place every three or four years since the first edition was held in Tokyo in 1981, but Canada has not participated until now.

According to the Abilympics Canada Association website, the members of the Canadian team going to Seoul will come from Quebec, Nova Scotia and Newfoundland and Labrador. They will compete in such events as computer assembly, painting, photography, digital poster design, cake decoration and desktop publishing.

Four years ago the Abilympics were held jointly with the World Skills Competition, however this year the two events have been separated for whatever reason. This year the skills will be in London. There is also a Canadian team going to this event however it does not include people with disabilities.

According to the website, Abilympics Canada is an initiative of the Nova Scotia branch of Skills Canada and the organization seems to be more or less centred in Nova Scotia, with most of the particpants originating there. However there is a national board of directors, which includes a representative from the Montreal English School Board. 

Down Syndrome: Technological Advances Raise Soul-Searching Questions About the Meaning of Life

Within a matter of months, the progress of science has outstripped our ability to process consequences and, unnoticed by most everyone, stands on the precipice of redefining human life.

Ever since the rise of humanity, Down syndrome, or trisomy 21, has been an integral part of the human condition. Despite all the efforts of medicine and therapy, Down syndrome has always been present. The population with Down syndrome plays a considerable role in almost all communities around the the globe. This may not be the place to discuss the extent of this role. Suffice to say that it is significant, it has existed since time immemorial and it provides a window into the human soul that would otherwise be difficult or impossible to find. Sooner rather than later, it is going to be left up to us to decide what value this role has to humanity.

Now, as has become widely known over the past number of weeks, the possibility of non-invasive prenatal testing for Down syndrome in the first trimester is imminent. This in itself is a development that pushes the philosophy and boundaries of human reproduction in a new direction that could take decades to assess and understand. It also represents an idea that will be controversial and contentious for all foreseeable time.

Then, just as this bombshell has landed right in our philosophical kitchen, science has launched another barrage on another front. As discussed here yesterday, drug therapies that can be expected to improve memory and other cognitive abilities in people with Down syndrome, are in human trials. And, even if this particular drug isn't as effective as hoped, there is plenty of reason to believe that some other drug will be identified in the near future. 

Where does this all leave Down syndrome?

The fact is that the new prenatal testing regime is just around the corner and its use will spread prolifically. After all, it seems inconceivable that society would forcibly put the responsibility of raising and caring for Down syndrome children onto people who do not feel able to accept this destiny. At the same time, many people will work to slow the effect of this testing. Pro-life advocates and religious fundamentalists will be front and centre. There are countries, even in the advanced western world, such as Ireland, that don't even have prenatal screening because abortion in any form is illegal.

So things will take some time to unfold completely. Who knows? The possibility of effective cognitive therapies may even give more people the courage to see Down syndrome pregnancies through to term even when screening comes out positive.

Yet, even with that outcome, we may find that Down syndrome as we know it will eventually come to an end as drug and other therapies mitigate the effects of the condition to a point where it becomes beyond recognition.

Which brings us back to the original question - do we have the right to interfere with this process?

Considering that, as it is, as many as 90% of Down syndrome pregnancies end in miscarriage, it could be understood that any birth of a child with Down syndrome is a minor miracle of nature all by itself. Something like the salmon that leap raging waterfalls to make their way upstream to spawn. Only a small few make it through. But do they have an important job to do? Virtually everyone who has had contact with Down syndrome people inevitably declares that their lives have been changed and that Down syndrome people have brought them joy, insight, empathy and even some kind of magic.

Many many people have tapped into the metaphor (or is it a cliche?) of Down syndrome children as "angels". You may or may not understand this in a religious sense.

Yes, having a child with Down syndrome is painful in many ways. But is this a necessary pain for humanity? Is it the price we pay to have messengers of unconditional love living amongst us?

Is this one kernel of the essence of humanity that we cannot do without?

New Treatment to Improve Cognitive Function in Down Syndrome with Drug in Clinical Trials

A drug that is effective for improving cognitive function in mice with Down syndrome is in final stages of a clinical trial on human Down syndrome patients..

“We are hoping to enhance memory and learning in those with Down syndrome,” said Alberto Costa, MD, Ph.D., an associate professor of medicine and the neuroscientist leading the effort. “We have been studying this drug for three years and are now ready to analyze the data on our trial. Our team at the University of Colorado and Children’s Hospital Colorado expects to have the results in the next two or three months.”

"Hoping to enhance memory and learning in those with Down syndrome"

 As explained in detail in an article in the New York Times Magazine this past weekend, Down syndrome is the result of such a complex over-representation of genetic material (an extra chromasome containing some 500 genes in each and every cell in the body), that scientists had long despaired of ever finding meaningful treatment or cure.

However, recent developments in genetics and other realms of science have opened the door to some interesting possibilities.

For one thing, Down syndrome has come to be closely associated with Alzheimer's disease. Another huge development was the creation in the 1980s of a mouse exhibiting many characteristics of Down syndrome.

Enter Dr. Costa. The drug he is currently testing is Memantine, which was approved for use in treating Alzheimer's in Europe in 2002 and the U.S. in 2003. The same drug, under the name Ebixa, has been conditionally approved by Health Canada for treatment of moderate and severe Alzheimer's.

More information on Memantine as an Alzheimer drug can be found here.

Special Needs Charity Energized by Founder Robert Pio Hajjar

The charity, which operates mostly in Ontario, based in London and Toronto, is called Ideal-Way. They take a progressive approach to their work, creating opportunities for people with special needs to participate in art shows, poetry contests and other activities.

The similarities with other organizations ends with the founder, Robert Pio Hajjar, a man with Down syndrome. Check it out...

Interview on the Team 990 About Special Needs Soccer

A couple of weeks ago, Randy Tieman of the Team 990 radio in Montreal, did an interview with Barbara Cheetham, of Lakeshore Soccer, who is one of the coaches involved with the "Super Sonics" special needs soccer program there.

The interview is very informative and, dare we even say,  inspirational. You can listen to the full interview: here.

"There are no liimits as to how far we are willing to go to spread this", says Cheetham.

She adds that the Super Sonics are willing to work with other clubs to help them set up their own special needs soccer programs.

One of the strategies they use that they find works well, is that they have young soccer players aged 14-18 who are willing to get involved as coaches. These youths develop a "magical connection" says Cheetham, with the special needs players.

She also says that they have participants with autism, Down syndrome and other conditions, and it is her experience that most of the children thrive in the environment and have a great time. Often, she says, it is their parents who have low expectations, whereas the kids themselves have a lot of fun.

"We're trying to spread the news around the communities that we are there for children with even the most limited abilities."

"Even if they can't speak, even if they can't, what people would say, function, the magic happens when you put a leather ball filled with air on a field or in a room, and they just find something which inspires them."

Quebec Athletes Bring Home the Gold from Special Olympics World Summer Games in Greece

Canadian athletes from the province of Quebec have returned home from the 2011 Special Olympics World Summer Games with a total of 12 medals.

The games were held from June 25 to July 4, with 7,500 athletes living with an intellectual disability representing 185 countries. The week of competition was held in Athens, Greece, home of the ancient Olympic Games, and featured competition in 22 sports.

The south shore was represented extraordinarily well, as St-Jean-sur-Richelieu's Justine Morrier potted two golds and a silver medal in swimming.

An overview of the Special Olympics activities ongoing on the Montreal south shore will be provided here in the near future.

English Quebec School Boards Hoping For Promotional Bang from Videos

A couple of video initiatives earlier this year have made a pretty decent attempt at marketing our English Quebec Schools via the video strategy. Both Riverside School Board and the Quebec Association of English School Boards have placed videos on Youtube that have collected a good number of viewers.

Riverside School Board's The Power of Pink was uploaded in January this year and is a response to the viral "Pink Glove Dance" in support of breast cancer research.



The Quebec Association of English School Boards hired Montreal rapper Annakin Slayd to produce a promotional video for the "Go Publique" campaign to increase attendance in English public schools in the province.

 



Pretty cool stuff - hope it has a good effect...

The Centre for Brain and Mind Opens at UWO

The University of Western Ontario opened one of the world's premier research centres in cognitive neuroscience yesterday. Now, such diseases as schizophrenia, Alzheimer's, autism and others will be studied under one roof in a state-of-the-art facility.

The Centre for Brain and Mind unites researchers who were previously scattered around the campus and further leverages the university's longstanding expertise in the field.

The facilities include equipment such as one of the world’s most comprehensive biomedical imaging suites and one of only three 7T MRIs used for neurological use worldwide. 

Special Needs with a Special Flair

An overview of the Greenfield Park Centennial Art Show, where RAPID's special needs community artists had their work on display, along with many of Greenfield Park's talented visual artists. The woman in the wheelchair in the centre of the photo is also enjoying her centennial year this year!

An art show put on by RAPID community members has been called a brilliant success!. RAPID held its first ever art exhibition at the Cynthia Coull Arena community centre in Greenfield Park, July 4-6.

Mosaic inukshuk created by the students of REACH School

The exhibition was held in conjunction with the Greenfield Park Centennial Art Show, celebrating the 100th anniversary of the incorporation of the town.  The RAPID show included work from throughout the south shore special needs community, including REACH School, the ARSDI and adult and school age people with special needs and a special flair for creative expression!

The Greenfield Park Centennial Committee organizers were open and enthusiastic about RAPID's participation from the outset. RAPID was encouraged to get involved and given substantial space to prominently display their works.

RAPID organizers have had a vision of potentially developing a special needs art exhibition in the future, however the opportunity to piggyback on the Greenfield Park Centennial may have accelerated the timetable for this project by a period of years. With a venue, a large number of artists and a certainty of visitors already in place, the Greenfield Park Art Show was a perfect opportunity for RAPID's artists (and organizers) to get their feet wet. By all accounts they will be eager to get involved with future such opportunities that may arise.

RAPID also had the opportunity to spread the word about their services and gave out many business cards and pamphlets during the exhibition.
   
A huge thank-you goes out to all the staff and organizers from the Greenfield Park committee and city who helped make this exhibition possible!

More Cases of Special Needs Kids Mishandled by Transport Services

Earlier this week a Montreal west island boy with cerebral palsy was dropped off at the wrong address in downtown Montreal. The 19-year old, who is confined to a wheelchair and unable to speak, was dropped off at the Montreal Children's Hospital, instead of day camp. The hospital and day camp have identical address numbers on different streets. The boy's mother discovered the situation when she called the day camp and found that he hadn't arrived.

The Montreal Transit Commission's adapted transport bus dropped the boy off, even though there was no one there to meet him.

In another case also this week, a New Jersey school bus driver and an aide have been fired after a 4-year-old was not dropped off and spent the morning in a parked bus while temperatures outside soared to over 100 F. The boy was discovered by a mechanic and required medical attention.

Many similar cases have been reported recently.

Without wanting to sound alarmist, the frequency of these incidents indicates that there is a problem that needs to be addressed.

One solution in use in some places is a buzzer at the back of the bus that needs to be manually switched off before the keys can be removed from the ignition. This however does not address the problem of dropping passengers off at the wrong place.

RAPID Gets Official Charitable Organization Status

RAPID has now received its charitable organization status and federal tax number, after years of perseverance.

RAPID, or "Resources for the Anglophone Population with Intellectual Disabilities", is a south shore (Montreal) based non-profit organization whose mission is to facilitate services, communication and support for members of its community.

With its charitable status, RAPID will now be able to issue official tax receipts for donations, which effectively puts it into the big leagues in terms of credibility. Not only will RAPID have a much better chance of receiving donations from companies or large corporations, it will also be in a position to receive support from charitable foundations.

During the time that the application for charitable status has been in the works, RAPID has had the opportunity to conduct needs and interest surveys within its community and have accumulated substantial data, which gives them a good idea of how current services are lacking.

RAPID's recognition as a charitable organization was officially announced at the Annual General Meeting held June 15.

Marie-Victorin School Board Loses Attempt to Force Child to Attend Special Class

Reevaluation of Special Needs Education in Quebec? 

South shore Montreal area parents who sued the Marie-Victorin School Board in 2006 have won their Human Rights Tribunal case against the board.

The parents, whose son attended regular classes for his first two years of schooling, were furious when, after evaluation by a school psychologist, the school board insisted that he then go into a special class for children with intellectual difficulties.

Please see this article by Gabrielle Duchaine in rue Frontenac (now archived at www.exruefrontenac.com) for a full report on the case.

The tribunal found that the school board had put their prerogative to group children appropriately for their own purposes, ahead of the boy's interests and his right to be treated equally. There is speculation that this ruling will force CSMV and other school boards in Quebec to re-evaluate their special needs policies from top to bottom.

From the point of view of parents with kids who have special needs this decision comes as welcome news. However, the counterpoint is that it becomes painfully obvious how the dysfunctional system permits five years of a childs' education to fly by while such a case bounces around on its way to a final ruling.

REACH School 2011 Graduation June 16

REACH School's graduation and final concert of the year was held June 16 at St. Andrew's Presbyterian Church in St. Lambert.

The school, which provides specialized education for children, aged 4-21, with intellectual disabilities, celebrated the achievements of three young graduates and presented a number of awards, accompanied by an inspirational concert program.

Included in this year's awards were, the James O'Donnell Memorial Award, the Bill Clahane Memorial Award, elementary and secondary awards from the Riverside Teachers' Union, the Sheila Woods Memorial Award, the Riverside School Board Bursaries Achievement Awards, the REACH Certificate of Merit, the Riverside Administrators' Awards, the Commissioner's Awards of Merit, The Sports Merit Award, the Travel Training Award, the Work Study Award, the Music Award, the Robert Hobbs Memorial Award, and the Michael Poirier Memorial Award.

Congratulations to this year's three graduates, to all the award winners and to all the students and teachers of REACH for another successful year!


Members of the entire community joined in for a rousing rendition of the REACH Song, which is as follows:

The REACH Song

When the world leaves you feeling blue, you can count on me
I will be there for you
When it seems all your hopes and dreams
Are a million miles away, I will reassure you
We got to stick together, good friends there for each other
Never ever forget that I got you and you got me, so

Chorus:
Reach for the stars, climb every mountain higher,
Reach for the stars, follow your heart's desire,
Reach for the stars and when the rainbow's shining over you
That's when your dreams will all come true.

There's a place waiting just for you, it's a special place
Where all you dreams all come true,
Fly away, swim the ocean blue, drive that open road
Leave the past behind you
Don't stop, gotta keep movin'
Your hopes, you gotta keep buildin'
Never ever forget that I got you and you got me

Chorus

Don't believe in all that you've been told
The sky's the limit, you can reach your goal
No one knows just what the future holds
There ain't nothin' you can't be
There's the whole world at your feet

REACH, Climb every mountain
REACH, Reach for the moon
REACH

The song was written by a member of the REACH community a few years ago. It would be much appreciated if someone could fill in the name of the author by way of a comment.

RAPID Annual General Meeting Wed. June 15

The Annual General Meeting of RAPID will be held Wednesday, June 15 at 7:00 p.m. at the ARSDI in St. Lambert, 240 St-Laurent St.

RAPID stands for Resources for the Anglophone Population with Intellectual Disabilities. The organization is conceived as serving the Montreal south shore area, although there are no formal geographical boundaries.

RAPID is a non-profit organization established by parents and community members with a shared interest in improving the quality of family and community life of people with intellectual disabilities and their families.

RAPID acts as a liaison between existing service providers and the community and is actively engaged in facilitating improved communication and access to services for our community families.

The AGM is an important opportunity to share our results and future plans with members and the population at large.

Using the iPad as a learning device for autistic kids

Here are a couple of great links sent by one of the RAPID members.

The first is an article exploring the benefits to autistic kids of using an iPad for learning.

The second link shows a few of the apps specially designed for special needs learning.

The video below is one of many on Youtube showing the iPad being used as a learning device.

Conservative candidate says autism "not a disability" but a special interest group

This blog is not intended as a political exercise, however there are times when the limits of ignorance exceed expectations and some response or exposure is called for.  

Conservative James Moore, the candidate in the  Port Moody–Westwood–Port Coquitlam riding, said that autism is not a disability - it is a special interest group, at an all candidates meeting.

In response to a question about whether he would support legislation to amend the Canada Health Act to include autism treatment (ABA/IBI) under Medicaree, he said,  "No, autism is not a disability and The Canada Health Act is not for Special interest Groups."

Perhaps this gives some insight into why Conservative candidates during this election campaign were either not allowed, or were afraid, to attend all-candidates forums. Let's hope more of the candidates aren't hiding opinions like Moore's.

Following is the report taken directly from the Medicare for Autism Now website:

Asked at Riverside Secondary All Candidates Meeting today in School Gym for RIDING:
Port Moody–Westwood–Port Coquitlam
Incumbent JAMES MOORE was present. He has missed one meeting and was scorned in the local newspaper for his absence when caught tweeting about the hockey game.
* Kevin Kim Green Party of Canada – absent
* Mark Ireland New Democratic Party- answer YES
* Stewart McGillivray Liberal Party of Canada -answer YES
* James Moore Conservative Party of Canada – answer NO – autism is not a disability and The Canada Health Act is not for Special interest Groups.
* Paul Geddes Libertarian – definitely not – medicare should be privatized – the night before his reply to creating laws to Civil Rights for disabled people received the answer that minorities can’t expect handouts.

On the same website there are reports that several Liberal and NDP candidates responded positively to this question.

Thank-you to Facing Autism in New Brunswick for bringing this issue to the forefront.

Liberal Senator urges feds and provinces to work out better way to handle autism

In an article that appeared in the Ottawa Citizen on April 2, just after the federal election was called, Liberal Senator Jim Munson called for active cooperation to address autism in Canada.

It isn't much to ask that a federal minister sit down with provincial counterparts and representatives from autism organizations to devise a better way to operate. It is time for federal politicians to take a leadership role.

Two recommendations from the report that I consider most crucial are national standards for treatment and research, and a national strategy for equal treatment and services across the country. Courageous actions are now needed to deal with this emerging crisis.

More to come on the federal election and special needs.

Family of four ordered deported from Canada because daughter has cerebral palsy

A family of four with a daughter who has cerebral palsy is fighting a deportation order. They were refused permanent resident status and ordered deported last year. The girl was judged to be an undue burden on the Canadian Health system.

Their only recourse now is an appeal to Immigration Minister Jason Kenney, which was launched yesterday.

Another great year for REACH and the McGill University Double Challenge program

It's one sign of spring that we don't like to see - yesterday was the final day for the year of  REACH and McGill University's "Double Challenge Program". In this program, all REACH students spend one morning a week at McGill, taking advantage of the specialized equipment, facilities, including the gym and pool, and teaching expertise, available at McGill.

The way the program works, all the REACH students and accompanying staff get on a school bus in the morning and are transported to McGill. Then, each student is paired with a McGill special education student, who puts together a program based on the student's level and aptitude. 

For the past few years, the REACH Governing Board and volunteer parents have organized a spaghetti lunch when the bus returns from McGill. This is enjoyed by all and definitely helps to streamline the balance of the day.

Alberta's Wildrose Alliance Party's interesting education platform

Alberta's provincial Wildrose Alliance Party has been making headlines of the past year or two most notably for running up their polling numbers to present a clear and present challenge to the ruling Progressive Conservatives.

Although Wildrose has that 'breath of fresh air' sort of naivety to it, one soon realizes that the party is of the extreme right variety.

Nonetheless, they do have some interesting platforms and leader Danielle Smith brings mojo not seen for quite a while in Alberta provincial politics. Wildrose currently has four sitting members in the Alberta Legislature and threatens to increase that number significantly in a future election.

Of special interest to this blog would be some of Wildrose's education policies, especially its special needs policy.

Following are some of the party's talking points:

Parents and teachers have a limited say in how special needs funding is best used, and there is a movement under to force special needs children into regular classrooms whether the supports are there for them or not.


It's not clear whether the motivation is cutting costs, or a misguided ideology - either way it needs to stop...


...We would then mandate that adequate funding follow each special needs student wherever their parents want to send them.

Below I've copied the full text of the Alberta Wildrose Alliance education policies, as they appear on the party's website on today's date.

One very interesting aspect of this policy is that, unlike Quebec's ~further right~ party, the Action Democratique, Wildrose advocates a return to virtually full local control of schools at the local school board and school level. You may remember that the Action Democrtique under Mario Dumont had floated a concept where they would remove local school boards entirely and run everything from Quebec City. What a nightmare that would have been (and still could be...).

• Empower individual public, Catholic and public charter schools by implementing a funding model that sends per-student operational and maintenance funding directly to the school each student attends. Individual schools will then be able to determine how to allocate those resources most appropriately (i.e. more teachers, new equipment, etc).
• Transfer decision-making authority concerning the building of new schools away from the provincial government and place it squarely in the hands of locally elected school boards. This would be done by implementing a publicly disclosed and objective funding formula that grants capital funds directly to local school boards based on student enrollment, school utilization rates, student growth projections and other relevant factors.
• Establish multiple pilot projects across the province where open-enrollment and tuition-free public, Catholic and public charter schools are permitted to opt into a competency-based learning and assessment education model. Students in these schools will have the opportunity to learn at a pace and in a way that is tailored to their individual needs and will not move on to more advanced material until they have demonstrated strong understanding of previously taught subject matter. Students who learn at an accelerated pace under this system will also be able to obtain college and university level course credit while still in high school.
• Grant public, Catholic and public charter schools more flexibility to offer a specialized curriculum track in the trades, arts, music, physical education and business.
• Protect a parent’s right to choose what school their child attends (public, Catholic, public charter, private or homeschooling) and continue the current Alberta Education practice of permitting a fixed percentage of regular per pupil funding to directly follow a student to a private school of the parent’s choice if desired.
• Mandate the public reporting of each school’s graduation rate and overall subject-by-subject assessment results so parents have the information they need to make informed decisions regarding their child’s education.
• Work with teachers and other educational professionals to replace the outdated and inadequate Provincial Achievement Tests (PAT) with a new standardized assessment model that evaluates a student’s actual improvement and comprehension of subject matter and more effectively identifies where further learning is required. It is also important to ensure teachers are provided with the professional development training necessary to implement such a model.
• Ensure students are properly assessed and any special learning needs identified as early as possible in a child’s development. Mandate that adequate funding follow each special needs student to the institution of that child’s parent’s choice to be used in a way that the parent and the school’s learning support team feels will best meet the individual needs of the child.
• Give special needs students the opportunity to attend the same classrooms as regular students where appropriate. In such cases, it is critical that adequate supervision and support be provided to the special needs student in order to ensure the classroom remains a healthy learning environment for all students.

Lakeshore Soccer has a special needs program

Lakeshore Soccer's special needs program offers soccer for kids with special needs from ages 4-16. The program is called the "Super Sonics".

More information can be found at this article in the Montreal Gazette or on the Lakeshore Soccer website.

We are not aware of any opportunities open to one and all for special needs kids on the south shore to play soccer. (if you are aware of anything - please leave a comment to that effect)

"Disable Bullying" U.S. group targets bullying of special needs kids

Glee star Lauren Potter, an actress with Down syndrome, is featured in a video that is part of a campaign to reduce bullying of special needs kids, launched by a coalition of U.S. groups .

The campaign, nicknamed "Disable Bullying", has been developed in response to rising evidence that special needs kids are 2-3 times more likely to be bullied than other kids. As detailed in the report Walk a Mile in Their Shoes, kids with special needs have consistently been identified as more likely to be targeted by bullies at school, in cyberspace and even among siblings.

Disable Bullying is a national campaign in the U.S. aimed at raising awareness of this problem and helping parents to gain the tools to alleviate it.

The campaign expands on five simple steps that parents can use to disable bullying of their special needs kids:

1. Educate
2. Ask Questions
3. Speak Up
4. Build Community
5. Disable Bullying

"It was the best day of my life!"

Yes, Eric Stitzenberger of Drayton Valley, Alta., who has Down syndrome, had an amazing day this past weekend when he scored three baskets in a high school basketball game against another school.

There is a very cool video on the link, which is a CTV News story.

LDAQ annual conference to be held in Montreal Mar 23-25, this week.

Intervenons en toute «connaissance»

The Learning Disabilities Association of Quebec is holding its annual conference this week at the Fairmont Queen Elizabeth Hotel in Montreal.

With over 2000 attendees and 100 presenters from the health and education sectors expected, this is one of, if not the largest conference in the field in Canada. Honourary chair for the conference is Monique Brodeur, Ph.D., Dean of the Faculté des sciences de l’Éducation de l’Université du Québec à Montréal.

The theme of the conference, Intervenons en toute «connaissance», or something like "Intervene knowingly", as it is translated in the conference program. There are a few English language presentations scheduled and described in the conference programme. Additional information does appear on the LDAQ website (http://aqeta.qc.ca), mostly in french.

Yet another incident as special needs kids being mishandled by school buses all over North America

A boy with special needs who functions at the level of a three-to-five year old was dropped off at the wrong address by a Calgary school bus Monday and left to stand there by himself. The boy's parents found him an hour later.

This is only the latest in a long parade of similar incidents. In fact, it is surprisingly difficult to find a specific incident by searching the internet, due to the fact that there are such a large number of similar incidents. Three separate cases in January, 2011, alone were found in a few seconds of searching.

Most of the incidents involve the children being left in the school bus.

A comment on one article indicated that the person's acquaintance was a bus driver in NY State and had been arrested and charged  after a similar incident. In most cases the bus companies seem to get by with a "sorry" and the drivers are often let go.

In another incident this January, a boy in the Windsor area was left strapped on a wheelchair for 2-1/2 hours in an unheated bus.

Obviously, school boards have a variety of procedures in place in attempts to prevent these situations. However, just by scanning the incidents, it seems that these procedures are invariably labour intensive and create openings for human error to creep in, resulting in these traumatic incidents.

Quebec "coalition" for successful integration says inclusion has "gone way too far"

A new "Coalition for Successful Integration" of special needs kids in Quebec schools was launched recently and snagged headlines in the Montreal Gazette and elsewhere. The coalition is spearheaded by the Fédération autonome de l’enseignement, a teacher's union, and also includes the Association des pédiatres du Québec and the Fédération nationale des enseignantes et des enseignants du Québec, as well as some individual members. The coalition is seeking support from the public.

The central idea of the coalition, according to its website, is that the integration of special needs kids in regular classrooms has gone much too far. (L’intégration dans les classes ordinaires des élèves handicapés ou en difficulté d’adaptation ou d’apprentissage (EHDAA) est allée beaucoup trop loin.)

The coalition's material frequently refers to the concept of inclusion (the term more often and probably more properly used in English, rather than "integration") as a "dogma".

The coalition's statement of principles includes such points as: Nous sommes persuadés que la décision d’inclure un élève à la classe ordinaire doit prendre en compte le meilleur intérêt de l’élève mais aussi l’impact de sa présence sur la réussite des autres élèves. In other words, the decision to include a student in a regular class must take into account the best interests of the student as well as the impact of their presence on the success of the other students.

Excusez-moi? That's only one of several statements that leaves one checking the year on the calendar to make sure we haven't somehow been returned to the 1950s. 

Most often this blog is presented from an objective perspective. But with all due respect, (and as much restraint as can be mustered) the ideas expressed in this declaration reflect extremely poorly on the professional associations / unions whose ideas are purportedly reflected here.

Not to mention, this coalition's commitment to an inclusive approach in general becomes embarrassingly apparent as one realizes that there is no English on the coalition website.

Stay tuned.

New prenatal testing for Down syndrome raises sensitive issues

The recent announcement that a new blood test devised to test for Down syndrome early in pregnancy has been proven highly accurate is going to result in intensified discussion of related ethical issues.

As seen in this CTV News story, there are a large range of opinions and concerns on this question.

When it becomes available, the new, non-invasive, blood test could be given earlier in the pregnancy than the status quo amniocentesis test, which has a one per cent chance of causing a miscarriage.

As the story goes on to address, parents would then have the opportunity to consider terminating a pregnancy at an earlier stage, when there would be possibly less emotional attachment. It is also quite possible that many more mothers would choose to have the blood test than currently have amniocentesis. With the predictable result of fewer Down syndrome births.

However, the ethical concerns being raised are powerful and important. Such questions as: do we have the right to "weed out" the less than perfect of our species? Those who have had the opportunity to live with people who have Down syndrome almost invariably state that these people make a rich contribution to the lives of all who know them. Do not Down syndrome people make up an important facet in the human mosaic? If the number of Down syndrome births were sharply curtailed by systematic testing, would we be in danger of removing a part of human diversity that is indeed necessary?

Without even getting into "cost to the medical and educational systems", "Pro Life/Pro Choice" angles or fundamentalist religious opinions, we see there could be legitimate, and at times contentious, concerns about new, easier, prenatal testing, not only for Down syndrome but also other so-called "abnormalities".

There are quite a number of comments following the CTV News story - I took the liberty of copying them and posting them on the Rapid Facebook group discussion section, in case they disappear from the CTV site at some point in time. The range of opinions is important to acknowledge and consider.

Special needs hockey tournament hosted in Vernon, B.C.

Young hockey players with developmental disabilities such as autism, Down syndrome and others are participating in a hockey tournament in Vernon, B.C. this weekend.

There are about 80 players involved, with teams from Vernon, Kelowna, Penticton and Nanaimo. The tournament is called the Super League Hockey Tournament.

Focus Groups will seek to assess health and social services needs and experiences of English-speaking community in south shore Montreal

The Community Health and Social Services Network in the South Shore Montreal (Monteregie) area is setting up a series of focus groups in the English speaking communities in the area.

According to the CHSSN, the reasons for the focus groups are:

"To assess the needs and experiences of English speaking citizens in relation to their accessing and receiving Health and Social Services.  This information will help influence future requests for money, projects etc. which will work towards helping the English speaking community here on the South shore (Brossard, LeMoyne, GPK, St. Lambert, Saint-Hubert, Chambly, Boucherville, Longueuil, Saint-Bruno etc.)."

There will be four two-hour focus group evening sessions held in St. Lambert, March 21-24, on the following topics:

1) people under 50 years of age with children living at home
2) Caregivers of people of all ages
3) Caregivers of people with chronic illnesses/conditions (ex: diabetes, schizophrenia, intellectual disability, etc.)
4) People 14 years of age and older experiencing or knowing friends experiencing problems with addictions: Ex: gambling, drug, alcohol, video gaming, internet etc.

The rationale cited is that this is an opportunity for people to say what is good and bad with the present situation and to help do something about it.
 
The CHSSN was seeking 10 participants for each session.

Robot to help autistic kids is a "simplified human"

The robot nicknamed "Kaspar" is being developed and tested in England.

Youtube Channel Covers Subject of Severe Autism

Newly added on the right menu bar under 'Net & Communities' is CDFoakley's Youtube Channel called "What is Severe Autism". There are currently 41 videos there. A pretty thorough and sensitive look at this subject. Topics range from general information to specific issues, such as services for autistic adults or nursing care for autistic adults.

Protein Dose Reverses Learning Problems in Down Syndrome Mice

A team of scientists at the National Institutes of Health in Bethesda, Maryland engineered mice to replicate Down syndrome and then showed that learning problems experienced by these mice were reversed by treatment with proteins. They found the treatments could be successfully administered either pre-natally or on adult mice.

Pretty cool news feed gadget

This latest blogger widget is a news feed just added at the bottom of the column on the right. The cool thing about it is that you can click on the term you want and the news feed for that topic will show right away. Other terms can easily be added - please request by way of a comment.

RAPID ARSDI joint Open House Set for Feb. 21 in St. Lambert

The joint RAPID - ARSDI (L’Association de la Rive-Sud pour la Déficience Intellectuelle) open house will be held Monday, Feb. 21, at 7 p.m., at the ARSDI office in St. Lambert at 240 Saint-Laurent.

 The Open House will include a financial planning seminar specially designed for people with special needs in the household. There will also be information tables from both ARSDI and RAPID, as well as a chance to see the ARSDI facilities first hand.

There will also be a town hall type session, where a new survey will be presented with the objective of learning more about the type of services that the community needs.

Rapid-ARSDI Open House - first event of 2011 in final planning

Watch for news of the first RAPID event for 2011 - It will be a joint Open House with ARSDI (L’Association de la Rive-Sud pour la Déficience Intellectuelle) - date and time TBA mid-late February. There is also planned to be a financial planning seminar with a focus on special needs issues held in conjunction with this open house. Stay tuned for further news!

Rapid Meeting

The next Rapid meeting is Tuesday, Jan. 11, 5 p.m. at the ARSDI. Major item of discussion will be the Open House now in planning for the latter part of February.

REACH Holiday Concert a Much-Loved Tradition

While many children and their parents are busy with ballet recitals, choir concerts and school plays at this time of year,  for many REACH students and their parents, the annual Christmas concert is their time to shine.

REACH's Time to Shine

The REACH School Holiday Concert was held Dec. 17 at St. Andrew's Presbyterian Church in St. Lambert. As always, there was a great turnout and a near-packed house, including parents, Riverside School Board representatives and other community members, for the occasion.

Without more careful research, it wouldn't be possible to say that the REACH holiday or Christmas concert has been presented every year without fail for any particular length of time. It is certain, though, that the tradition has endured many, many years and holds a special place in the hearts of all of the members of the REACH community.

This year's production included songs by all of the classes, with inclusion of various props, musical accompaniments and audience participation. There was also an entertaining Christmas play performed by the older classes. Following the student features, there was also a carol sing-a-long including the audience.

The morning's proceedings began with a singing of O Canada and  brief addresses by the school principal and the church reverend. Following the concert, participants were invited back to the school for a potluck lunch contributed to by the parents.

REACH Students Enjoy Seasonal Festivities

As may be well imagined, there are some daunting challenges for any school to present a Christmas concert in this day and age. Issues ranging from what to politically correctly call the event through to rehearsal logistics all create hurdles to the production of a successful concert.

In the case of REACH School, there is the obvious challenge involved in conceiving and adapting all of the aspects of the program for such a diverse community. As a school for intellectually challenged kids, REACH personnel do a lot of thinking outside the box to create an event that all can participate in and enjoy, while still providing the audience and parents with an occasion to remember with pride and fondness for years to come.

Due to the size and sparse population of REACH's huge service area, there are only a small number of students in each age group and ability level. However, the diversity and age range of the school's students do allow for creation of a program that includes humour, song, creativity, fun, sharing, interaction and great memories for all.

 Strong Ties in the Community Appreciated

REACH's strong ties within the St. Lambert and south shore community are most appreciated at this time of year. The ability to use the facility offered by St. Andrew's church illustrate once again how REACH has always benefited from the physical assets of the community and the neighbourly warmth and generosity of the people of St. Lambert.