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Enewsletter 22-Jan-2008 |
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MCDSIG News:
Our meeting for Feb 22nd will be postponed to a time in March due to presenter schedules and Rose and I won't be able to attend because our son Jack will be recovering from minor surgery.
Also the 3-21 eat out, this year falls on a holiday. We probably won't have the turn out that we had last year. Instead of having a group thing, we encourage all of you to celebrate this day on your own. (3-21 symbolizes trisomy 21)
Protection
I constantly come across articles about abuse as I filter through the news for our enewsletters. I typically don’t pass these sad stories onto the group, but I would like to make sure that we are on the look out for signs that our children are taken advantage of or abused. Not just by peers but adults as well. A recent incident was brought to my attention that could have been worse if it wasn’t for parents and other teachers correcting the situation. If you would like to know more about this instance, please drop Kristine Acevedo an email.
Sports for our Children
Baseball: See below for an invitation for challanger baseball:
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Dear Parents,
NEO sports are starting a Challenger Division of Baseball. We will be playing at Burholme Park on the T-Ball fields starting on Sunday April 13th at 11 PM. Registration will be held from January 24th thru March 31st at Burholme Park from 11AM to 1 PM. Please feel free to contact me with any questions. My phone number are: Cell: 215-913-3814 Home: 215-333-7046 E-Mail: jakester419@comcast.net Thank you John Klouser
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Soccer:
TOPSoccer (The Outreach Program for Soccer) is a community-based training and team placement program for young athletes with disabilities. The program is designed to bring the opportunity of learning and playing soccer to boys and girls who have a mental or physical disability. The goal is to enable the thousands of young athletes with disabilities to become valued and successful members of the Lehigh Valley soccer fraternity, Eastern Pennsylvania Youth Soccer (EPYSA) & US Youth Soccer families. For more information on TOPSoccer, please email chittura@yahoo.com
Medical
Our children are constantly teaching us things about ourselves as we teach them. Recently a huge medical breakthrough taught the medical community the uniqueness of our children and shed some light on tumor growth. See the many articles below to learn more about the discovery:
Gene Dose Affects Tumor Growth - The number of copies of a particular gene can affect the severity of colon cancer in a mouse model. The research team describes how trisomy 21, or Down syndrome in humans, can repress tumor growth.
Down's syndrome gene protects against cancer - Researchers in the United States say the chromosomal abnormality that affects people with Down's syndrome also protects them against cancer.
News-Medical.Net: http://www.news-medical.net/?id=33936
MSNBC: http://www.msnbc.msn.com/id/22474607/
Reuters: http://news.yahoo.com/s/nm/20080102/lf_nm_life/cancer_down_dc_2
BBC News: http://news.bbc.co.uk/2/hi/health/7167892.stm
Prenatal
Our neighbors in Bucks County were in a great article about prenatal screening. Mariah Drenth and Diana Santoro were interviewed for an article, found online at: The Risks of Testing. The paper version has some great pictures too.
After DNA Diagnosis - this isn't really specific to DS prenatal testing, but gives an idea of some benefits of DNA anaylsis
Message from NDSC about Prenatal testing:
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Dear NDSC Members, Last month, the American College of Obstetricians and Gynecologists (ACOG) released their Practice Bulletin 88, which expanded on their earlier Practice Bulletin 77 regarding prenatal screening and invasive diagnostic testing for Down syndrome. Below is the NDSC response, which was endorsed unanimously by your Board of Directors at their mid-year meeting in Boston last weekend. The statement expresses the Board’s concerns with the Practice Bulletin, but also recognizes ACOG’s reference to referrals to parent groups when a diagnosis is made. This is a positive step and we look forward to working with ACOG to ensuring that all patients are given accurate, up-to-date information. This statement was released to the press January 15th. Thank you for your support of NDSC’s advocacy efforts. If you’d like an electronic copy of either of these Practice Bulletins, please contact sue@ndsccenter.org for a PDF copy. You can also read our January 2007 response to Practice Bulletin 77 on our website at this link: http://www.ndsccenter.org/news/pressRelease.doc David Tolleson FOR IMMEDIATE RELEASE ATLANTA (January 15, 2008) – In its December 2007 Practice Bulletin 88, the American College of Obstetricians and Gynecologists (ACOG) expands on its position regarding invasive prenatal diagnostic testing for Down syndrome, which was originally outlined in its January 2007 Practice Bulletin 77. The main recommendation is “invasive diagnostic testing should be available to all women…Maternal age of 35 years alone should no longer be used as a threshold to determine who is offered screening versus who is offered invasive testing.” Though the guideline states “prenatal diagnosis is not solely performed for assistance in the decision of pregnancy termination,” the implication is that a baby with Down syndrome is a bad outcome that should be avoided. Furthermore, there is no scientific evidence presented to support the recommendation which is based primarily on “consensus and expert opinion”, the weakest level of support. Of equal concern is that the authors of ACOG Practice Bulletins 88 and 77 are neither named nor are any potential financial conflicts of interest disclosed. This omission calls into question the process by which “expert opinion” is transformed into public health policy. Practice Bulletin 88 does suggest referral to the NDSC, NDSS or local organizations, when a diagnosis of Down syndrome is made. Although this is a step in the right direction, there is still much work to be done to convince the medical community of the worth of people with Down syndrome. The National Down Syndrome Congress (NDSC) believes that individuals with Down syndrome have innate worth and should be treated with dignity and respect. The NDSC calls upon ACOG to require that all patients be given, without prejudice, information that accurately reflects the realities of a life with Down syndrome. Furthermore, ACOG and other healthcare organizations should ensure that doctors and other healthcare professionals are adequately trained to provide accurate, non-directive information. Our goal is not to limit a woman’s access to prenatal screening, nor to limit her reproductive choices. Rather, it is to ensure the screening and diagnostic process is done in the context of an informed personal conversation with the woman’s doctor, during which current, balanced information is given about the reality of Down syndrome today. In this way, we hope decisions can be made based on knowledge and not fear. |
Education Resources
ED Pubs Online: Here is a useful website for getting free materials from The US Dept of Ed: http://www.edpubs.ed.gov/webstore/Content/search.asp
Gaskin Update: The following text must be added to IEPs. Until it makes it into a new template, expect to see it attached:
It is the responsibility of each public agency to ensure that to the maximum extent appropriate, students with disabilities, including those in public or private institutions or other care facilities, are educated with children who are not disabled.
Special classes, separate schooling or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability is such that education in regular education classes, EVEN WITH the use of supplementary aids and services, cannot be achieved satisfactorily.
QUESTIONS FOR IEP TEAM:
- What supplementary aids and services were considered?
- What supplementary aids and services were rejected?
- Explain why the supplementary aids and services will or will not enable the student to make progress on the goals and objectives (if applicable) in this IEP in the general education class.
- What benefits are provided in the regular education class with supplementary aids and services versus the benefits provided in the special education class?
- What potentially beneficial effects and/or harmful effects might be expected on the student with disabilities or the other students in the class, even with supplementary aids and services?
- To what extent, if any, will the student participate with non-disabled peers in extracurricular activities or other nonacademic activities?
Latest Wright's Law Newsletter has information on Free Appropriate Public Education (FAPE), how to tape-record meetings, how to write letters to document your concerns, and more. It is really worth your time to check it out and sign up to receive more in the future: http://www.wrightslaw.com/nltr/08/nl.0102.htm
Sample Specially Designed Instruction and Supplementary Aids and Services (this should help parents writing their IEPS) Click here to see the Document
Great Information on www.Edweek.org's blog: Blog submissions are contributed by Mark Walsh who has been covering legal issues in education for more than 15 years for Education Week. He writes about school-related cases in the U.S. Supreme Court and in lower courts. Users should use these blog entries as a useful "jumping point" to find articles of interest. Please click on the link below or copy and paste it into your internet browser. http://blogs.edweek.org/edweek/school_law/
Training
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www.indcreek.org - local organization offers training and really cool fundraising and social activities.
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Transition 101: Leaving Special Ed & Entering Adult Life in the Community
Details: Parents must be proactive in planning their teenagers' transition from special education to adult life in the community, taking the lead in developing Transition IEP goals and life plans. This workshop is coordinated by Jennifer Graham, founder of onTRACK Transition Advisors. During each one-hour class session, you will learn from local parents and professionals who are Transition experts:
Date/Time: 6 Wednesdays, February 6 to March 12 7 to 8 PM
Tuition: $125 per family
Place: MONTGOMERY COUNTY COMMUNITY COLLEGE Blue Bell Winter-Spring 2008
Registration: Select one of these convenient options to register for the class:
· Register on-line at https://webadvisor.mc3.edu/
· Register by phone (215-641-6397) with credit card payment
· Visit the College's Continuing Education offices in Parkhouse Hall, Room 140, Monday through Friday between 8AM and 5PM.
· Secure registration form at http://www.mc3.edu/sa/FORMS/coned/centralRegForm.pdf
Register by mail (Mail with your payment to Montgomery County Community College, 340 DeKalb Pike, Blue Bell, PA 19422)
Register by fax (215-641-6441) with credit card payment.
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Pennsylvania Department of Education Annual Conference: "Indicators for
Success, Improvement, Performance, and Results"
Details: This conference offers a range of effective interventions to assist in
meeting the needs of all students. The preconference session will provide
information on resiliency among children and adults, and the opening keynote
will illustrate characteristics of inclusionary schools that are responsive
to student diversity. See the attached PDF for session and registration
information.
Date: Sunday, February 24, 2008, to Wednesday, February 27, 2008
Place: Hershey Lodge and Convention Center, Hershey, Pennsylvania
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Self-Advocate Training from Vision for Equality
To register for any of
the sessions: Contact Sharon Harper-Young to register: Phone:
215-910-2338, Email:
sharperyoung@visionforequality.org
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"Funding for Services" plus simultaneous Family Training:
"Understanding the MR System in PA/What Do I Do Once I Have a
Waiver?" |
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Pennsylvania's Education for All Coalition, Inc. presents the 3rd Annual
Membership Meeting on Inclusive Education (for parents, educators, related
professionals and others)
Date/Time: Saturday, February 2, 2008, 9:00am - 1:00pm
Place: PaTTAN locations throughout the state For more information, http://www.paedforall.org/
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2nd Annual Variety Show Auditions
Date: Saturday, February 9, 2008
Times and Locations: TBD
"All children are invited to audition. If your child has a talent in the performing arts, including: singing, dancing, playing a musical instrument, or performing a comedy or cabaret routine, they are invited to audition. Please remember that this is
an audition and that they are unfortunately unable to invite every child who participates to perform. Please be sensitive to your child's feelings regarding this matter." If your child is interested in auditioning, please complete the attached form in PDF format. Once they receive your application, they will contact you with the time and location of your child's audition. All forms are due by Friday, February 1st. Please direct any questions to their office at (800) 553-7806.
Inspirational Stories About People with Down Syndrome:
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Skating to the Goal - Brian Collins and his son Danny, 13, at an American Special Hockey Association game at Cantiague Park in Hicksville, N.Y. Danny, who has Down syndrome, plays for the Long Island Blues.
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Hockey Player, Trent Whitfield is a new parent to a daughter with DS, read about their story here: Whitfields Face Toughest Battle Off the Ice
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Family Didn't Know Where to Turn After Life-Changing Surprise – This article documents a family just starting out.
Father Prepared to Give His Son a Kidney -
Blazing a new trail for Down syndrome - Eighteen years ago, when her son was born with Down syndrome, Cynthia Kidder took on a whole new job. Not just raising a child with special needs, but starting an organization designed to create a more positive perception of people with Down syndrome.
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Down's daughter helped save mum - A woman with Down's syndrome dialled 999 and helped save her mother after she had a heart attack.
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This son reveals size of heart
Art/Books and other Media
Books:
An Everyday Inspiration - This is the inspirational life story of Matthew Ian Terry, a young man with Down syndrome, written by his younger sister, Kayla Terry. An Everyday Inspiration started as an AP English assignment for Kayla in her senior year in high school and blossomed into a labor of love and special tribute to her brother, Ian. His story is full of laughter, hope, and overcoming obstacles; it proves that even those who appear to have limited potential have unlimited possibilities.
Devoted Mother of Down Syndrome Son Shares Her Incredible Story to Help Others - 'Journey with Jeff by Sybil Y. Reisch' is an inspirational memoir of the joys and stresses of raising a special needs child.
Artist with Down syndrome makes mark with ‘Kellie’s Book’ - When Carla Greenwald’s daughter, Kellie, was just 17 days old, Carla remembers attending a support group for parents of children with disabilities. A 4-year-old girl in a flouncy dress walked around smiling at all the adults. The young girl had Down syndrome.
Journey with Jeff: Inspiration for Caregivers of People with Special Needs
"When Jeffrey Reisch was diagnosed with Down syndrome, his parents stumbled, but never lost their faith that God had chosen Jeffrey to spread His love and His word. Journey with Jeff: Inspiration for Caregivers of People with Special Needs by educator, author, and caregiver Sybil Y. Reisch speaks frankly of the heartache in equal measures of the joyful surprises of
her twenty-seven year journey with her son. Along with her family and growing community support, she shares a poignant message of sorrow and celebration for caregivers and families of children and adults with special needs."
TV/Movies
Children with Disabilities in Movies, Ads and Television - good article, but great links
Website catalogs films with disability themes: http://www.disabilityfilms.co.uk
Art
Artist with Down Syndrome, Michale Johnson, Needs Work We just heard that Michael's art supply store is closing. He can get a 25% discount until February and needs to get some orders so he can buy portrait-grade canvases, paint, watercolor blocks and brushes and continue his philanthropic projects. For those not familiar with his work, Michael paints small watercolor portraits of children that are printed on note cards and is quite capable of getting a good likeness. Michael is doing some beautiful work. For years his prices haven't changed. He recently received a request from GiGi's Playhouse to donate artwork for their fund raiser and
got a reminder about the NADS Bowl-a-thon. He always gives a number of paintings for their raffle. Please visit the following web site to find out more:http://users.psln.com/sharing/Michael
Tax Stuff
Don't forget about these money saving write offs: Click here to view the Word Document
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