Enewsletter 21-Dec-2007
	MCDSIG News:   We've (the Townsends) have had a lot going on recently.  We've been busy ever since September between Josh's transition, birthday parties, DSIG meetings and events, Jackson (our new edition), and switching computers that we missed passing on some information.  In the future if I can't keep up with the newsletter I will forward the Bucks County DSIG enewsletters on (they do weekly newsletters and they are very good). I don't aticipate using this much, I try to make sure that our group gets timely and regional specific news, without overwhelming you with email forwards. Now, on to the news:   Our Holiday Party is over, we had a good time and raised $1007.  This is plenty of money to have another year full of free events with money left over for special projects like Operation Gifts, Sponsoring families to the NDSC convention, and we hope to help needy families in 2008 (I'll keep you posted on this). Click here to view the pictures. If you want your pictures added, email them to us.   Our 2008 dates are shaping up.  This is what we have so far.  I will be updating the website with this too.  I will eventually update our upcoming events page.   Date Event Place Feb 22nd Information Meeting (Tentative Topic is Communication Methods) Trinity Lutheran Church Mar 21st 3-21 Eat Out for Awareness TBD May 10th Spring Fling Trinity Lutheran Church July 18th Information Meeting (Families that went to NDSC convention will tell us what they learned) Trinity Lutheran Church Sep TBD Pizza in the Park TBD Nov TBD Information Meeting Trinity Lutheran Church Dec TBD Holiday Party Marjenes   Member in the News - Jake “The Snake” Klouser is on the Pop Warner website.  Go to the link below and scroll down to the Dec 6th portion.  You'll see photos of Jake in action.  The article also helps explain the Challenger League http://www.popwarner.com/07superbowl/championshipblog.asp Events and Places to Go CHOP 5th Annual Trisomy 21 Symposium is April 12, 2008    Competence and Confidence Partners in Policymaking for Children of Families in Early Intervention (C2P2 EI) - C2P2 EI is an innovative training program providing participants with up-to-date information, leadership development training, resources and skills. Participants learn about the local, state and national issues that affect young children with disabilities. A limited number of family members are accepted into the program at no cost to the individual.   Indoor/Outdoor Playground: Kix and Giggles A children's playground called KixandGiggles in Northeast Philadelphia has opened which caters to families with children with special needs (the owner has a child with Down syndrome). I understand that on Mondays the entrance fee is waived for families with children with disabilities (reservations required, I think). URL: http://www.kixandgiggles.com/     Baseball League Forming, see letter below: Dear Baseball Players, Parents and Guardians:  I hope you are starting to dust off your spikes and gloves, because another exciting season of Challenge Baseball is about to begin.  Please ask your friends and classmates if they would like to play, we can always use additional baseball players.  The league requires no registration fee, but asks those who are able to pay all or part of the $90.00 fee.  The Horsham Rotary Club, the Horsham Little League and anonymous individuals defray the costs of the program not covered by registration. Opening Day is tentatively scheduled for Saturday, April 12, 2008, with team pictures tentatively set for the following weekend on Saturday, April 19, 2008.  More details will be provided by email as they become available.  Please send the form and your check to:   Fran Brett, 6 Robin Circle, Horsham, PA  19044 215-672-9263 E-mail fpb1957@aol.com  Challenger also needs volunteers to help with activities, uniform distribution, fund raising, and coaching – everyone is welcome to help.  If you are interested please inform us now.  A planning meeting is tentatively scheduled at the Horsham Library, 435 Babylon Road Horsham, PA 19044, at 7:30 pm on Thursday, January 10, 2008, for anyone interested in helping with the league this season.  In addition, there will be field cleanup day before the season starts, in conjunction with all of Horsham Little League - the date will be announced by email..  We will circulate further scheduling details as soon as possible via email.  Since we provide all communications by email, it is important, if possible, that we have a working email address from each family.  If your email is filtered for spam or other reasons, please permit email from sjaskiewicz@lawsgr.com and bobisandyi2@comcast.net so that you do not miss any important messages.  P.S. For a copy of the registration form, please contact Bob Immerman (E-mail bobisandyi2@comcast.net) or Stan Jaskiewicz (Email sjaskiewicz@lawsgr.com ).     Inspirational Look over Jordan, what do you see?  - Student manager, Jordan Kidder, 18    Kellie Greenwald, who has Down syndrome, shares her secrets of happiness   An inspiration to everyone – story about an active 6th grader   Making the most of an opportunity – A 25 year old's accomplishments.   A Great Blessing -- Student with Down Syndrome Inspires School – a 17 year old student fitting in and making an impact.   My Down's daughter changed my life – a mother's perspective about her daughter.   Life With Anthony – story about a toddler    Adoptive Child With Down Syndrome Gets Good Home, Transforms Parents    63-year-old man with Down syndrome loves life -- and Elvis Jimmy Moline recently celebrated his 63rd birthday by dressing up as Elvis Presley, climbing into a limo with friends and taking a spin to River Vista Center in Redding.    Motivated to raise special child This article goes to show how little things we do can change lives    Raising Awareness  Family has record race with help from Phil - Running to raise awareness    Down syndrome advocate speaks at Misericordia   - Karen Gaffney, 29, the woman who swam across a lake to raise awareness, spoke at a university.  Sports related  Athlete with Down syndrome inducted into SJ Hall of Fame    Taylor Doesn't Let Down Syndrome Keep Her From Golf – 19 year old golfer.    PAL team rallies around boy with Down syndrome –PALS football article    Hockey Program Breaks The Ice For Kids In Sports    A victorious opportunity    La Pine boy scores big points for his team    Cheerleaders  Inclusive cheerleaders win big    Cheers From The Challenged    Cheerleader breaks new ground, draws huge applause – tournament level cheerleader    Student with Down syndrome makes high school dance squad – High school girl is on the cheerleading squad.    Arts  Boy With Down Syndrome Crowned Mr. Wando – Trumpet player    Down syndrome art praised all over world   Dance class builds family for kids with Down syndrome – Dance school in South Dakota    High school play celebrates talents of all students – a school play that includes children with disabilities.   Mexican School for Down Syndrome Art Gains International Acclaim - An art school in Mexico   No Silent Nights For This Choir Group   It's in Their Hearts   Discovering a World of Hope   Local Mothers are the Inventors of Necessities   Science and Medical Down Syndrome Research and Treatment Foundation Awards New $250,000 Research Grant to Johns Hopkins School of Medicine for Novel Potential Therapeutic Target to Address Cognitive Impairment in Down Syndrome   Down Syndrome Babies Helped to Walk Months Earlier with Treadmill Training   Zoom! Babies Learn to Ride Robots at University of Delaware   Therapy Program Takes Steps in Dance    Make Your Own Therapy Tools and Toys   A Range of Disorders Tamed by the Beat    Early Help Key to Speech Therapy Success   Education  Reading Out of the Box Helps Change Lives    Wrightslaw's Special Ed Advocate -- Research Based Reading Programs    Paul Spengle from MARC sent us common mistakes that occur during IEP's.  Click here to see it.  Vocational and Post-Secondary Education Disabled workers find their niche Joe Steffy's double diagnosis of Down syndrome and autism made him unemployable in some minds. His father, Ray Steffy, disagreed. The Steffy family created Poppin Joe's, a kettle corn popping company based at their Louisburg, Kan., home. Joe Steffy is the proprietor, head popper and chief merchandiser. ''My intent was to create something for Joe so that he could be a part of ...  Campuses Widen the Mainstream   Prenatal Motherhood and Genetic Screening    Doctors Urged to Offer Down Syndrome Screening to Expectant Mothers    Mom's Down Syndrome Decision   Smoking is linked to needless tests for Down's Syndrome Smoking is to blame for pregnant women undergoing needless and risky tests for Down's Syndrome, experts warned. Scientists have discovered that chemicals in cigarettes distort the results of screening for disability    Gene tests alarm Down syndrome families You're pregnant. Your prenatal test results are in. And the doctor tells you this: Your baby has tested positive for the chromosome that triggers Down syndrome.    Presentation of Gene Test Data Must Be Fuller, Advocates Say   Social   Loving Them For Who They Are   Person-Centered Planning  Observing Signs of Down Syndrome More Than The Sum of Their Chromosomes Parenting: Dads and Disabilities Statistic: Divorce in Families of Children with Down Syndrome Urbano, Richard C.; Hodapp, Robert M.; American Journal on Mental Retardation, v112 n4 p261-274 July 2007. Abstract: "In this study, we examined the nature, timing, and correlates of divorce in families of children with Down syndrome (647), other birth defects (10,283) and no identified disability (361,154). Divorce rates among families of children with Down syndrome were lower than in the other two groups. When divorce did occur in the Down syndrome group, however, a higher proportion occurred within the first 2 years after the child's birth."    Political   Secretary of Public Welfare Announces PA Youth and Family Institute   NDSC Action Alerts - NDSC offers a service called action alert emails.  These alert you of chances you have to help shape legislation.  We receive so many of these it can be overwhelming and sometimes we don't pass them on in time.  So if you are interested in the alerts, and would like to be added to the NDSS mailing list, send name(s) and email address to advocacy@ndss.org   Requests Request for Illustrations for Children's Book About Down Syndrome Brian Beale, a parent from the Delaware County Down Syndrome Interest Group, is writing a children's book called, "Colin Gets a Chance," which is based on his son, Colin, who is eight years old.  He decided to write this book to help parents and teachers open up the lines of communication about Down syndrome and how much these children have to offer. It is really great for all ages. He is working with a publisher now and came up with the idea to have children with Down syndrome illustrate the book. Several members from the DCDSIG are already involved and their children have started illustrating, but he still has a need for more illustrations at this point. Please see the attached PDF from Brian for more information.  See book below    Media   Documentary: "Dakota's Pride" "Dakota's Pride is a heartwarming documentary about a father's search for the truth about Down Syndrome. Tough questions are posed to and answered by a noted Harvard Physician, and parents of children with Down Syndrome. The answers are surprising and inspiring. In addition to being informative, this documentary celebrates the successes that have been and can be achieved by individuals with Down Syndrome." For more information, including purchasing the DVD, visit the web site visit the website   Zoe Mace -- Once Upon a Time   Music Video: - Standing Outside the Fire   Sujeet Desai's Christmas Album is Now Available   Child King movie – an article    the official website Religious Services Available (MCDSIG is a secular organization, we respect your beliefs and we embrace the diversity of the group. The items below are being relayed to the group.  The text below is written by someone else.  If you would like other services included, feel free to pass them onto us.) Bux-Mont Christian Church: Pug Wugs Program Pug Wugs is a national ministry reaching out to people with mental retardation and their families through the church. The Pug Wugs at Bux-Mont Christian Church began in 1984 as a result of one father's wish for his son with Down Syndrome to be an important and active member of the church family. The church then explored different options and came across the Pug Wug program for people with special needs. The group started with five of the young man's friends; and today it is a group of thirty plus individuals ranging from the ages of fourteen to forty years old. For more information, please visit the web site. URL: http://www.buxmontchristian.com/content.cfm?id=2009    Rejoicing Spirits ministry at Christ’s Lutheran Church, Oreland, Montgomery County.  Ideally, we desire for all individuals to be fully included into a community of believers. However, we have found that there is a population of individuals with developmental disabilities who are not currently part of a church community. The Rejoicing Spirits service could be a wonderful stepping stone for those who have that goal. We have designed an adapted and meaningful worship service aimed to capture the attention and interest of these individuals. The Rejoicing Spirits service is an uplifting experience … even for individuals who already are part of a church community. We are creating an environment that is welcoming and accepting of all children of God. We ask that you distribute the enclosed invitations to 1) families & friends and 2) staff and agencies you work with and 3) all interested and supportive community members.  For more information about Rejoicing Spirits visit, www.rejoicingspirits.org Thank you so much for your support!               This is the information provided by Paul Spengle from MARC, mentioned in the Education portion of the newsletter. Ten Common Mistakes Parents Make During the IEP Meeting by Matt Foley, M.Ed., L.P.C. & DeAnn Hyatt-Foley, M.Ed. 1. Believing the professionals are the only experts. It can be very intimidating to sit at a table with several educators and professionals. Professionals/Educators do bring a great deal of knowledge and experience to the table. Although most parents do not have a background or degree in education, they have a great deal of knowledge and experience regarding their child. Parents are experts in their own right; they also provide historical information and the big picture from year to year. They know what works and does not work with their child and can be a great asset to the IEP team. Parents have an intuitive sense as to what is appropriate for their child. After working with parents for nine years, we are still amazed at how parents are usually intuitively correct about what will work for their child. We encourage parents to follow their hunches. If something does not sound right, check it out. Usually after some research, parents will discover their hunch was correct. 2. Not making requests in writing. Any request a parent makes needs to be in writing. This includes requests for assessments, IEP meetings, correspondence, related services, etc. Written requests are important because they initiate timelines that the school district must follow in response to your request. This will also create a paper trail. When you write a letter be sure to send it certified mail. When you have a discussion by phone with a school official, write a letter that briefly outlines what you talked about. Documenting your conversations helps prevent miscommunication. Documenting requests (i.e., teaching assistant, speech, etc.) for the IEP committee clarifies to the committee what you are requesting and allows you to use your own words (as opposed to the note taker paraphrasing your request). We encourage parents to type exactly what they think their child needs and list why they think it is educationally necessary. This helps parents think through why they are requesting a service for their child. Have the IEP committee record the written request as part of the IEP minutes. At this point, the IEP committee has one of two choices: the committee can accept or deny the request. If the committee denies the request, then they must follow the procedural safeguards in IDEA and provide written notice of why they are denying the parents' request. This method makes it difficult for an IEP committee to tell parents "no" without thinking through the options. If the request is not written down, the school district is not obligated to provide the service. Make sure you write it down. 3. Not being familiar with Prior Notice of the Procedural Safeguards (34 CFR 300.503) All sections of the Procedural Safeguards are important to parents. This particular section gives parents some leverage during the IEP meetings. Whenever parents make a request for their child in the IEP meeting, the IEP committee is required under Prior Notice to provide the parents with written notice with a reasonable period of time. The notice must include the following: · A description of the action proposed or refused. · An explanation of why the agency proposes or refuses to take the action; · A description of any other options that the agency considered and the reasons why those options were rejected.; · A description of each evaluation procedure, test, record, or report the agency used as a basis for the proposed or refused action; A description of any other factor that is relevant to the agency's proposal or refusal. We have found many instances where a parent requests an assessment or service only to have the IEP team tell the parent it cannot be done. By making all requests in writing and by requiring the IEP team to provide Prior Notice, the parents make the team accountable for its decisions. This practice also takes issues out the emotional areas, allowing all team members to focus on IDEA standards. 4. Requesting a related service instead of an assessment that supports the need for a related service. Many times parents will request services such as speech, occupational therapy, physical therapy, etc. in the IEP meeting. Frequently the IEP committee will respond by stating that the student does not need the service. We recommend that parents do not request the service but request the assessment that supports the need for the related service. For example, instead of requesting speech for your child request a speech assessment. Only a certified or licensed professional is qualified to determine if a child needs or does not need a particular related service. As in #2, list the reasons why you think an assessment is educationally necessary for your child and submit your request to the IEP committee as part of the IEP minutes. 5. Accepting assessment results that do not recommend the services you think your child needs. Sometimes parents receive assessment results that do not accurately describe their child and/or do not recommend the amount and duration of services the parents think the child needs. Under 34 CFR 300.352. Independent Educational Evaluation (IEE), parents of a child with a disability have the right to obtain an independent evaluation at public expense if they disagree with the results of the school's assessment. When the parent requests the IEE (in writing) the school has one of two choices: they may either provide the IEE in a reasonable period of time or they may take the parents to a due process hearing. When an IEE is agreed upon, parent and school must come to an agreement as to who is qualified to assess the student. The examiner for an IEE cannot be employed by the school district . Parents should request the school district's policy on guidelines and qualification for their examiners. 6. Allowing the assessment information to be presented for the first time at the IEP meeting. Parents are entitled to have the assessment information explained to them before the IEP meeting. we encourage parents to have the person who administered the assessment give them a copy of the report and meet with them to explain the report several days before the IEP meeting. This enables the parents to think through the information before making decisions for their child. If all IEP decisions are based on the information from the assessment, it only makes sense for the parents to be knowledgeable and informed about the assessment results in a way they can understand. 7. Accepting goals and objectives that are not measurable. Measurable goals and objectives are paramount for your child's IEP. Without measurable goals and objectives, it is difficult to determine if your child has had a successful school year. In working with parents, we have encountered many IEP goals and objectives that are not measurable. All goals and objectives should come from assessment data. Assessment has four different components: 1) Formal assessment (i.e., WIAT, Woodcock-Johnson, Brigance), 2) Informal assessment (i.e., classroom work), 3) Teacher/parent observation, and 4) Interviews. After the information has been collected about the student it is compiled into an assessment report. Recommendations on how to work with the student are listed toward the end of the report. If you receive an assessment report that does not give recommendations for potential goals and objectives, the assessment is not complete. After the assessment has been completed, the IEP committee determines he student's present level of performance (PLOP) and states what the student is currently able to do. The committee then develops the IEP goals and objectives. The goals state what the student is expected to accomplish by the end of the year. Objectives break the goals down into increments. For example: PLOP Based on the Brigance and classroom work, Johnny is currently able to read on a fourth grade level with 90% mastery. Goals By the end of the school year Johnny will be able to read on a fifth grade level as measured by the Brigance and classroom work with 80% mastery. Objectives By October 1, Johnny will be able to read on fourth grade, second month level with teacher assistance as measured by the Brigance and classroom work with 80% mastery. By January 1, without teacher assistance, Johnny will be able to read on a fourth grade, sixth month level as measured by the Brigance and classroom work with 80% mastery. A method of determining if your goals and objectives are measurable is to ask someone who is not on your IEP team to read them (i.e., a teacher, another parent, advocate, etc.). Then ask "Hypothetically, if you were to go into the classroom, would you be able to see my child working on these goals and objectives?" If someone outside of your IEP team cannot answer "yes", then your goals and objectives are not measurable. 8. Allowing placement decisions to be made before IEP goals and objectives are written. Many times after assessment is discussed, the IEP committee will determine the child's placement. Goals and objectives are always written before placement is discussed. To ensure that the child is placed in the Least Restrictive Environ-ment (LRE), the IEP committee must determine: Which of these goals and objectives can best be met in the general classroom? With any remaining goals and objectives that cannot be met in the general class-room, the committee determines: Which of these goals and objectives can be best met in the general classroom with modifications and support? This line of inquiry continues until all placement options have been decided upon for all the goals and objectives. The committee must always start with the LRE and then work toward a more restrictive environment only as necessary. IDEA is very clear that the IEP committee must always consider the general education classroom as the first option for students with disabilities. 9. Allowing your child's IEP meeting to be rushed so that the school staff can begin the next child's IEP meeting. This practice is particularly common at the end of the school year when educators are frantically trying to have IEP meetings for all the students who receive special education services. IEP meetings may be held one right after another. There is no problem with this practice as long as the members of the IEP team feel that all issues have been adequately discussed. Many times, however, parents feel rushed. It is important that all issues are adequately addressed before ending the IEP meeting. When the educators have not planned adequate time to address all relevant issues, request that the IEP team meet again at a more convenient time to further discuss your child's education. 10. Not asking a lot of questions. It is very important to ask questions and lots of them. Educators use many terms and acronyms specific to special education. Parents may become confused when these terms are used during the IEP meeting. This can add to the frustration that a parent may already be feeling when they do not under-stand what is being said. It is important to ask what the terms or acronyms mean. Unless a parent has a background in special education, they are not expected to know the terms and acronyms. Informed decisions cannot be made when parents do not understand what is being discussed. At some point in time we have made all the mistakes listed above. We developed the habit of debriefing after every IEP meeting to discuss our performance during the meeting. We have gradually accumulated information and developed skills and we continue to trust our intuition. We have found that when parents apply the suggestions listed above while working with their IEP committee they will see results. It is important that parents continue to accumulate information and develop skills related to the IEP process. Most parents feel overwhelmed by the special education process. Do not be discouraged in your pursuit to obtain the supports and services your child needs. We found it helpful to break the process down into small steps. When you use the suggestions listed above, you will be that much closer to obtaining your child's Free Appropriate Public Education. After using each suggestion listed, pat yourself on the back for becoming an even better advocate for your child. Paul Stengle Back to newsletter, Education       The book mentioned under "Requests" that needs your help to illustrate.       Colin Gets a Chance By Brian A. Beale     Page 1:   One Saturday morning Colin climbed out of bed.  He just knew this would be the day.  “Today I’m going to get a hit,” he said, as he hopped on his bike and sped away.  He waved to his mom, shouting “I love you,” and pedaled like never before.  Yesterday is gone and today’s brand new.  He thought, “This time I’m going to score!”   Page 2:   This morning seemed different than any other, as the sun shined bright in the sky. “I sure hope Colin gets a chance today,” thought his mother, as she stood and waved goodbye.    Page 3:   You see, Colin had never scored a run.  He’s never even been picked to play.  “I’m always watching other kids have fun,” he says, “But I feel like I’m in the way.”    Page 4:   But he kept on trying just knowing one day that he would finally catch a break.  “I wish they would just ask me to play,” he thought, “I know that’s all it would take.”   Page 5:   Colin pulled up to the field with a big smile on his face.  He was greeted by Coach Lee.  “Billy, shortstop…Tommy, second base,” called Coach, “Colin, you’ll sit here with me.”   Page 6:   “But, Coach,” he said, “Can’t I play?”  Coach Lee replied, “This is the biggest game of the year. I have to play the best players today,” he said, “But you can help me to cheer!”   Page 7:   Coach Lee had never let Colin hit or even swing the bat.  He pointed to the bench where Colin was to sit and the bench is where Colin sat.   Page 8:   Colin was born with Down syndrome so on the surface he’s not quite the same.  I was born with an extra 21st chromosome,” says Colin, “But I’d still like to play this game.”    Page 9:   The team knew if they beat the Bears today, then they would be in first place.  But they also knew how much Colin wanted to play.  They could see it on his face.    Page 10:   With the game on the line and the score tied at four, Billy went over to Coach Lee.  “The team would like you to do something you’ve never done before,” he said, “Let Colin bat for me.” Page 11:   “It’s a tie score with a runner on third,” Coach screamed, “All we need is one hit and we win!”  Billy thought for a moment, looked at his team and said, “We know, Coach.  Put Colin in!”   Page 12:   “Colin may look different than you and me, but his feelings are the same.   We took a vote and we all agree.  Put Colin in the game.”   Page 13:   Tommy added, “Colin may take longer to learn, but none of us care about that.”  The team decided it was now their turn to cheer for Colin at bat.    Page 14:   So Coach Lee handed Colin a bat and said, “Here’s your chance, big guy!”  Colin looked at his coach, put on his hat, and said, “Thanks,” as tears filled his eyes.   Page 15:   Colin walked up to the plate for the first time all year, and he could hear the crowd yelling his name.  “Colin!  Colin!” was all he could hear.  Boy how he loves this game!  Colin has never been so nervous before.  He could hardly hold the bat.   He knew if he got a hit the winning run would score, and he wanted nothing more than that.   Page 16:   So Colin stepped up to the plate.  The pitcher threw the ball.  Colin swung just a bit too late and “STEEEERIKE ONE!!!!” was the call.  He could hear the crowd yelling even louder now as everyone was screaming his name.  He swung at pitch two and hit the ball foul.  Would Colin win the game?   Page 17:   Colin gripped the bat tighter now knowing he needed a hit.  He was down to his last strike.  Billy yelled, “Let’s go, Colin.  You can do it!” as the pitcher threw the ball down the pike.   Page 18:   Colin swung the bat like never before and this time he hit the ball.  The runner on third ran home to score.  “SAFE!” was the umpire’s call.    Page 19:   Colin’s team had won the game.  Coach Lee held him over his head.  As everyone was chanting Colin’s name, here is what Colin said.   Page 20:   “I know I may be different than you so thank you for letting me play.”  He said, “I never thought my biggest dream would come true.  Thanks for making my day!”   Page 21:   Even though the team wanted to win the game, they also thought Colin should play.  They  all decided it would be a shame if they let his Down syndrome get in the way.   Colin would have never gotten to bat if his team did not take a stance.  They were the REAL winners for doing that and finally giving Colin a chance.   Back to Newsletter, Requests.                     - - - - - - - - - - - -