GVP Special Parent Guide 2013 by RocParent

Rochester Area & Genesee Valley Parent â&#x20AC;˘ September 2013

www.RocParent.com

Special Parent Supplement

contents /

rochester area & genesee valley special parent / 2013 edition

b publisher's note m essay / What I Wish You Knew... Tips & tales from a mom of a child with disabilities

Q health / Food for Thought kids & food allergies

T community / A Special PTA -

an inside look at fairport's special education parent-teacher association

U travel / Enjoying Disney with Special Kids

A health / Getting Active -

extracurricular activities & children with special needs

G health / Especially Sleeping sleeping, snoring & Special Needs

J community resources

on the cover Aurora Olcott What I Wish You Knew 36 Visiting Disney with Special Kids 46 Kids & Food Allergies 40 A Look at Fairport's Special Education PTA 44 Special Needs & Sleep 54 Rochester Area & Genesee Valley Parent â&#x20AC;˘ September 2013

publisher's note / by Barbara Melnyk

elcome to our FOURTH annual Special Parent supplement within the September issue of Genesee Valley Parent. For the past several years we have been dedicating a large section of our September issue to articles, personal stories and resources related to special needs. As a result of the overwhelming response, in 2010 we created a more extensive supplement for parents to read and hold onto.

The response continues to be fantastic with heartfelt comments from parents with children of all abilities. What we have learned over the past few years is encouraging. There are a wealth of resources available in our community for parents who have children with special needs – you’re not alone. It’s that community support which inspired us to continually provide an annual editorial guide that focuses on support agencies, gives a voice to area parents, and helps you stay educated and informed. A special thank you to the parents and businesses for their willingness to share their stories and inspire others. A special thanks also to Dresden Engle for sharing her heartwarming story and insight. We are also incredibly proud to share with you that last year’s Special Needs section was awarded silver place for Special Section within a Publication from the Parent Media Association (PMA). According to the judges at the University of Missouri School of Journalism, “A lot of practical advice for parents of kids with special needs is combined with stories that give insight and understanding for all other readers. Excellent resource listings as well.” This is the fourth year in a row that this section has been recognized with an award and we hope that you will be inspired by this year’s selection of articles. Also, remember that in addition to the printed version of this guide, you can also find the digital edition online on our website at www.RocParent.com/SpecialNeeds. This dedicated section of the website also includes an ever-growing set of current articles, topics and resources to visit and read throughout the year. Regards,

Staff publisher Barbara Melnyk mail@GVParent.com EDITOR-IN-CHIEF Jillian Melnyk editor@GVParent.com COMMUNITY EDITOR Natalee Kiesling Natalee@GVParent.com Account Executives Cynthia Goldberg Natalee Kiesling Magazine layout & design Jillian Melnyk graphics@GVParent.com CALENDAR EDITOR calendar@GVParent.com DISTRIBUTION MANAGER Sandy Citarella

contributing writers John Boccacino Dresden Engle Wendy Helfenbaum Julia Garstecki Malia Jacobson Basic subscription rate: $25/year. Send subscription inquiries and changes to address below. Copyright 2013, by GVP, Inc. All rights reserved. Reproduction without permission is strictly prohibited. Distribution of this magazine does not necessarily constitute an endorsement or necessarily reflect the opinions of this publication.

Genesee Valley Parent Magazine PO Box 25750 Rochester NY 14625 p: 585-348-9712 f: 585-348-9714 www.RocParent.com

member of parent media association

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Special Parent Supplement

buzzworthy / items of note Sensory Friendly Films

upcoming events and dates of note

This program provides a special opportunity for families to enjoy their favorite films in a safe and accepting environment. The auditoriums dedicated to the program have their lights up, the sound turned down and audience members are invited to get up and dance, walk, shout or sing!

September

Upcoming Screenings: October 5- CLOUDY WITH A CHANCE OF MEATBALLS 2 November 9– FREE BIRDS December 7- FROZEN 2-D Where: AMC Loews Webster 12, 2190 Empire Blvd., Webster, NY 145804 WHEN: All shows are at 10:00 am. Dates and films are subject to change. For more information: 671-0941, www.amctheatres. com/movie-theatres/amc-loews-webster-12

allergy eats If your family has dietary restrictions due to a food allergy, you know how difficult it is to dine out and feel confident that the restaurant is adequately equipped to prepare a safe dish. Finding an allergy-friendly restaurant has just become MUCH easier with a handy (and free!) app and website called Allergy Eats. Enter the criteria (dairy free, gluten free, etc) and your location and it generates a list of restaurants in your area that meet the requirements. Patrons are encouraged to leave reviews after each visit so the information stays current and users stay informed. Allergy Eats has been endorsed by the Asthma and Allergy Foundation of America, and has been featured in the Washington Post, Seattle Times, Boston Globe and many more. Visit www.AllergyEats.com or download the free app for more information and to try it.

free digital books

Monday, September 9 SUCCESS STRATEGIES FOR FAMILIES WITH ADD. 7-8:30pm. Henrietta Public Library, 455 Calkins Rd. 359-7092. www.hpl.org Sunday, September 15 ROCHESTER KIDNEY WALK. Registration & family fun at 8:30am, walk at 10am. Frontier Field,1 Morrie Way, Rochester. 234-7660. www.donate.kidney.org

Sunday, October 13 3RD ANNUAL TOWPATH BIKES BREAST CANCER AWARENESS RIDE. 10am. Mendon Ponds Park, Clover St. & Pittsford-Mendon Center Rd., Pittsford, 14534. 381-2808 www.towpathbike.com

Sunday, September 29 MARY CARIOLA: WALKING ON SUNSHINE. Registration 9:30am, walk at 10:30am. Ontario Beach Park, Rochester, 14612. 271-0761. www.marycariola.org

Sunday, October 27 AL SIGL COMMUNITY WALKABOUT. Registration 8:30am, Walk 9:30am, Costume Contest, 10:30am. Eastview Mall, 7979 PittsfordVictor Rd. 223-4420. www.alsigl.org

October

Saturday, November 23 GILDA'S CLUB HEROES BALL. 6pm. $175 RIT Inn & Conference Center, 5257 W Henrietta Rd, Henrietta www.gildasclubrochester.org

Friday, October 4 FLOWER CITY DOWN SYNDROME NETWORK PHOTO GALLERY EXHIBIT. Black Radish Studio Village Gate, 272 N. Goodman St., Suite 501, Rochester, 14607. 662-9585. www.fcdsn.com Saturday, October 5 GEORGE EASTMAN HOUSE PHOTO FINISH 5K. 8am. George Eastman House, 900 East Ave., Rochester. 271-3361. www.photofinish5k.eastmanhouse.org

Does your child have difficulty reading or have a learning difference like dyslexia? You might qualify for free digital books and reading tools from Bookshare! Funded by the Department of Education, this service includes more than 150,000 books from popular literature to textbooks and teacher-recommended reading. Memberships work like an unlimited library card where children can explore the digital library, download books, and read on their own. Students can also be signed up through their teacher and school. For more information visit www.bookshare.org

October 8, 2013 AutismUp’s Annual Fall Conference with Paula Kluth, Ph.D. 9 am - 3 pm Burgundy Basin Inn www.autismup.org

Sunday, October 6 17TH ANNUAL BUDDY WALK. 11am. Webster Thomas High School, 800 Five Mile Line Rd Webster, 14580. 662-9585. www.fcdsn.com

November

Sunday, November 24 TURKEY CLASSIC 5-MILE RACE AND 1-MILE FAMILY FUN RUN. 8-11am. SE Family YMCA, 111 E. Jefferson Rd, Pittsford. www.rochesterymca.org/turkeyclassic

December

Wednesday, December 11 ROC THE DAY. The Rochester community’s 24-hour giving extravaganza. Last year, more than 6,000 ROCstar donors gave over $875,000 to help local notfor-profits. All day. www.roctheday.org

find more upcoming events on our online calendar at www.RocParent.com/calendar

Rochester Area & Genesee Valley Parent • September 2013

essay/ by Dresden Engle

what I wish you knew... tips & tales from a mom of a child with disabilities

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ake it your own!” has been the multi-season mantra of American Idol judges who encourage young singers to stand out and be different. It’s funny, when you think about it, because that’s a big switch from what kids have been conditioned to do. We spend our childhood trying to fit in by looking like and acting like everyone else. When we get older and are competing for jobs — as a national musical artist or a salesperson — we realize we need to be different from the masses to get noticed. We finally learn, perhaps too late in life, that diversity is good. But in first grade, you just want to look and act like everyone else. You want to ride the same bus and wear the same sneakers as all the other kids. For children with disabilities, fitting in is hard and being “different” hurts. It would be helpful if fellow students are taught by their parents that it’s OK to be friends with a child with a disability and to be more understanding and compassionate. But, unfortunately, mom or dad most often does not know how to handle this, either. Heck, before I was a parent of a child with a disability, how much did I know and understand? Here are some tips and tales about kids with disabilities and what we parents wish you knew.

Riding the Little Bus

My 6-year-old daughter Aurora enjoys riding her little bus, and the personal attention that comes with it. Her bus comes about 10 minutes after her sister’s big bus, the one all the kids in the neighborhood ride. The downside to this arrangement: the other neighbor children don’t know Aurora because she rides a different bus and is in the special-ed classes. And she does wonder “when” she will finally be able to ride the big bus. Due to a hospital mishap at birth, Aurora has brain damage, officially diagnosed with cerebral palsy and epilepsy. As a result, she has developmental and motor delays and disabilities. What this means is she acts 4 years old instead of her

second-grade age, wears braces on her feet and ankles, has little use of her left arm and hand, wears glasses due to cortical blindness, and has a one-on-one aide at school due to behavior issues that include hurting fellow students. At first, we tried the big bus for kindergarten, but Aurora’s behavior was more than the bus driver could handle. Also, her sister and a neighbor let us know that Aurora was being taunted on the bus by older kids who were egging her on to misbehave. Per our request, the school principal watched tapes from the school video monitoring system. Unbeknownst to me, he called the involved youth to his office to talk with them. How did I find out this occurred? A parent called me and said the following: “My sons were scolded by the principal for an incident on the bus. Could you and your daughter come to our house so you can explain to them what is wrong with her?” Wrong with her? While Aurora may have disabilities, she is beautiful and friendly and funny and I grow more in love with her every day. Therefore, there is nothing “wrong” about her. Needless to say, I never went to that woman’s house.

continued >>>

A Guide to What Terms to Use

As we all strive to be sensitive and aware, here are some tips regarding using the least −offensive and most-respectful language related to people with disabilities. Say “disability”: The preferred terminology is disability or disabilities used after the verb, as in “my daughter has a disability” or “my daughter has to undergo several therapy sessions due to her disabilities.” The label “disabled” implies the person can do nothing, when in fact a disability often only affects a certain part of the body and that person, in fact, can do many things. Don’t say “handicapped”: Worse than “disabled” is the word “handicapped.” Guess where the word came from? (Prepare to be surprised.) It means that one with a disability always has her cap in her hand, looking for a handout … her cap is handy. Say “accessible”: The word accessible is preferred, as in accessible parking or accessible entrance or restroom. Other tips: Please refrain from the words “wheelchair bound” -- those who use a wheelchair for mobility find it degrading. Other terminology frowned upon is saying one “suffers” from a disability or is “stricken with” a disability. Simply say “has a disability.” Learn more about accepted terminology at: • www.miusa.org/ncde/tools/respect •h ttp://inclusioninthearts.org/projects/aboutdeal/glossary-of-preferred-terms/

Rochester Area & Genesee Valley Parent • September 2013

What Parents Wish you Knew… “Children with autism are less likely to have friends at school and more likely to be bullied. We look to parents and teachers to help teach tolerance and understanding.” — Sherry, mom to a child with autism “Please don’t say ‘I’m sorry’ when you meet my child. Different does not equal less. And you could learn a lot about compassion and goodness from my amazing child.” — Tanya, mom to a child with Down syndrome “You need to include the child in all activities, so he or she can learn and grow and feel included. Don’t be afraid to invite a child with a disability to a birthday party, for example. His or her parents can assist in pre-planning for accessibility to the venue and other details, such as special food that may be needed.” — Paul, dad to a child with cerebral palsy

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Yet Another Step Away From ‘Normalcy’

The phone call I should have been expecting did eventually come from the principal − Aurora would now be riding a BOCES bus by herself. Yes, the “little bus,” the one kids joked about while I was growing up. I began to cry on the phone. When the principal asked why I was crying, I replied, “When you are a parent of a child with a disability, every time he or she is moved yet another step away from normalcy, it’s just hard to accept.” (Now, I understand “normal” is just a setting on a washing machine, but that was the wording I chose to explain my feelings that day.) I could have fought it, but you learn to choose your battles. The battle I was suiting up for was the annual meeting where her first-grade services were to be discussed and decided upon. My husband and I were ready to feel beat up, as we often had been made to feel like bad guys each time we were called to school for a behavior incident. How do parents handle this kind of news and the feeling that they are being judged by medical and school officials? You just learn to become your child’s biggest

advocate − from (as in our case) taking her dozens of times to Boston so she could be treated by the country’s top neurologists to fighting for a one-on-one aide so Aurora’s behavior wouldn’t result in a fellow student being seriously harmed.

Parents Don’t Get Manuals with the Disability

I never thought I would say these words: “Well, I’m sorry the brain damage didn’t come with a manual!” And I surely never thought I’d be saying them in anger to a school administrator who was making me feel guilty for my daughter’s poor behavior that day. She was rattling off my daughter’s wrong-doings (tipped over chairs, thrown toys, classroom aides being poked and pinched), almost if she was expecting me to give answers for the actions. I actually found myself being thankful I had another student at the school, so the administration wouldn’t write me off as a bad parent, since the general-ed sibling was so well behaved. The reality is that parents of children with disabilities never get a crash course in how to handle what is thrown our way. But, since we live it every day, we can share tips with other parents.

Special Parent Supplement

Tips so We All Can Feel More Comfortable on Either Side of the Fence Please don’t assume or say there is something “wrong” with our child who has a disability. Rather, sincerely ask us what his or her challenges are, so you can learn, and in turn explain it to your child. I do my part by openly telling fellow parents about my child’s challenges; I know they want to know but are uncomfortable asking. Please ask your child to not “ignore” children with disabilities, even if it’s a little uncomfortable that they are “different,” with braces on their legs, yelling out of turn, using a wheelchair, using sign language, or talking to themselves. Yes, it’s OK to say “hi” to these fellow students, eat lunch with them, and play with them on the playground. I’ve been told by adults with disabilities that they are invisible to most people. Let’s start teaching this lesson early to our children, so no one is invisible, ever. Explain to your children what the word compassion really means; not pity, but compassion as well as respect and acceptance. Be compassionate when you encounter a child with a disability — visible or not — throwing a temper tantrum. I sometimes find myself telling strangers, “She has a disability” when we are being stared at in a store. I shouldn’t need to do that. If you wish to learn more about special-ed programs at your child’s school, especially since integration is now the trend, contact the principal or the district’s special-ed chairperson rather than a parent of one of the special-ed children. You have a right to ask questions and to be concerned about education and positive school experiences.  Dresden Engle is a Rochester-based PR professional and writer, as well as a comedian and singer and proud mom of two second-graders. Rochester Area & Genesee Valley Parent • September 2013

health / by John Boccacino

Food for Thought 

kids & food allergies

s area parents prepare to send their children off to school for the start of another exciting school year, most families go through a comprehensive checklist to ensure their children are as prepared as possible. Among the back-to-school tasks, parents will make sure the proper school supplies are purchased and that both parent and child know the route the bus will take to and from school each day if transportation is required. For the parents of the roughly six million American children living with food allergies, going back to school means another, more daunting task: keeping their children safe at school from the potentially life-threatening allergic reactions that can arise from their allergies. As far as these parents and children are concerned, attending school is more than learning about math and science while fostering relationships with their school mates. School can be a battlefield, where each new school day, each class trip and each birthday party can present potentially life-threatening challenges in the form of allergic reactions to peanuts, tree nuts, milk, cheese and gluten, among the wide array of food allergies. According to the most recent data provided by Food Allergy Research and Education (FARE), approximately 15 million Americans live with food allergies, with 1 in every 13 children being affected

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by food allergies. That means, roughly two children in every classroom in this country come to school with a pre-existing food allergy. Forty percent of children with a food allergy have already endured a life-threatening or severe allergic reaction. Every three minutes, someone in the US visits an emergency room because of a food-related reaction. That threat is real for parents like Tara Spitzer-List, a Gates resident who has two sons with food allergies. Ethan, 6 (turning 7 in September), is allergic to peanuts, milk/dairy and shellfish while Joshua, 4, is allergic to tree nuts. Ethan used to be allergic to eggs, but has since outgrown

that allergy. However, his peanut allergy is “severe,” according to his mom, who discovered that Ethan had food allergies when he was nine months old, and that Josh became allergic when he was 2 years old and heading into pre-school. While the school is supposed to be a learning environment, it can also be a hazardous environment for parents and children living with food allergies. SpitzerList says she makes Ethan’s lunch every day because “it’s just too difficult for the school to provide him with a safe, tasty lunch” given his allergies. “It was hard in the beginning when we first found out, esSpecial Parent Supplement

pecially for me because I like to cook for my family and milk, cheese and creamy kinds of foods were some of my favorites to cook. Not anymore,” says Spitzer-List, who added that it seems like more and more children are growing up with food allergies compared to when she was a child. “My advice for other parents (when it comes to kids with food allergies) is just to ask about what kinds of food they can eat instead of being so quick to say ‘I don’t have anything you can eat.’ Food labeling is getting much better in this country, but some people still don’t realize there can be hidden ingredients or a small amount of nuts in many common foods that could send Ethan into a bad reaction.” An adverse reaction to food can cause a child to experience any number of the following symptoms, depending on the type and severity of the allergy: breaking out in hives or rashes, vomiting, swelling of the face and even difficulty breathing. And these food-related reactions don’t just affect the children living with these allergies. Nowadays, most schools are highly aware of the dangers presented by food allergies, with separate nut-free, dairy-free and gluten-free tables and rooms being established to allow all children the chance to thrive in school without fear of an anaphylactic reaction. Peanuts and tree nuts are among the most likely culprits when it comes to severe allergic reactions, but allergens such as fish, milk and gluten can also cause reactions in children. One of the best ways to prevent reactions is simple: wash your hands, especially after snacking on nuts. That simple measure can help prevent the spread of peanuts and associated proteins that can linger behind and potentially cause an adverse reaction in an unsuspecting child. Jacqueline Griebel, the head of school for the Webster Montessori School that offers both school and wraparound (pre- and post-school care) to 110 students, says educating the parents on the dos and don'ts of food safety is essential for maintaining a safe learning environment. Each of the students in the school is responsible for bringing in his or her own lunches, so if a parent isn’t careful, she could accidentally create a situation where another child’s safety and welfare could be endangered. For one week each year at the Webster Montessori School, each child is responsible for providing a snack for their classmates, and to help parents with this process, the school will circulate a detailed shopping list that highlights what foods are safe and acceptable for consumption, and which foods could cause problems. “The kids with food allergies are fairly aware of their allergies, and they love to help each other out when it comes to educating their classmates on what types of food can and cannot be around,” says Griebel, who helps oversee the training for the school’s 20 employees. “It makes children really think about themselves, their bodies and what types of food they are consuming. But at the end of the day, we need to rely on the adults in the school and also the parents to know the various dietary restrictions and make sure a safe environment is maintained.” Aidan Beaudrie was just 11 months old when a day care staff member fed him a peanut butter sandwich. Almost immediately after consuming the peanut butter, Aidan suffered an allergic reaction, his face swollen and puffy. Luckily, Aidan didn’t go into anaphylactic shock, and when the day care notified his mother, Patty, of the incident, she instantly knew what to do. Aidan was given some liquid Benadryl and soon after, the swelling and puffiness subsided. Aidan, now continued >>> Rochester Area & Genesee Valley Parent • September 2013

13 and an eighth grader at the Hope Hall School in Rochester, lives with both a peanut and a tree nut allergy. Patty says her son suffers with the “highest level” peanut allergy and carries his EpiPen around with him at all times. An EpiPen contains a calculated dose of epinephrine by injection, and is most commonly used for the treatment of acute allergic reactions to avoid or treat the onset of anaphylactic shock. Initially, Patty says some school officials were concerned about giving a needle to a child, but since an EpiPen usually only buys the person 20 minutes, Aidan carries two EpiPen’s on him at all times to cover himself in case of an adverse reaction. “This is a life or death situation and the biggest thing is to make the parents feel comfortable that their child is safe while at school,” says Patty, whose son wears a Medic Alert bracelet and who has been well-trained on identifying symptoms that could lead to an outbreak. “When Aidan goes to a friend’s birthday party, we will often provide his own cake or ice cream so he can celebrate with his friends, says Patty. "You want a special needs child (like Aidan) to be like every other child, and having food allergies can definitely make a child feel separated from the other children. This is a life-saving battle and Aidan’s life depends on handling this properly.” According to the Centers for Disease Control and Prevention study conducted in 2008, there was a marked 18 percent spike in food allergy cases between 1997 and 2007. The study revealed that the number of people living with food allergies is also on the rise, but researchers haven’t been able to figure out why the numbers are climbing. For Rachel Chalmers, the associate executive director of the Stepping Stones Learning Center in Rochester, there is no such thing as too much communication when it comes to accommodating children with food allergies. Serving more than 500 students between the ages of 2 and 21, Stepping Stones employs 150 staff and has a full-time school nurse on campus for any and all medical emergencies, including allergic reactions to foods. Families enrolling their children in the center are encouraged to notify the school of any pre-existing medical conditions. Whenever a child with a food allergy is signed up, the nurse will then notify that child’s teacher of the situation, carefully explaining the sensitivity of the allergy. A second school administrator then double-checks and makes sure that everyone involved knows there is a child with a food allergy in their classroom and where to locate the pertinent emergency medication that could save that child’s life. “We rely on the information provided by our families, and we make sure our staff is trained on administering an EpiPen in case of accidental exposure,” says Chalmers. This year, Chalmers and her staff have, among the many children with food allergies, a set of twins who are allergic to seven or eight different food items, Chalmers says. The school has both a peanut-free and a tree nut-free room set up to accommodate children with those allergies. “All our staff know what to do in case of an emergency. Since I started here, we’ve definitely seen more cases of food allergies. It’s always been a serious threat but we try our best to not let that impact how a child engages in our activities while remaining aware of how life-threatening a situation can be.”  John Boccacino is a freelance writer and monthly contributor to Rochester Area & Genesee Valley Parent Magazine. He is currently the Director of Sports Information for Keuka College. He lives in Webster, NY.

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Special Parent Supplement

Rochester Area & Genesee Valley Parent â&#x20AC;˘ September 2013

community / by Jillian Melnyk

A Very Special PTA ď&#x20AC;˝

an inside look at fairport's special education parent-teacher association

e all take a different journey but in some ways we're similar," says Jackie Ray, a Fairport mother of three: Ashley (10), Austin (15), and Alexis (19). At age 7, Austin was diagnosed with ADHD and by 9, he received an Individualized Education Plan (IEP). Austin is currently in his sophomore year at Fairport High School and Jackie has taken on the role of chairperson for Fairport's Special Education Parent-Teacher Association (SEPTA), an organization that formed last year for parents of children with special needs. the lynaugh family â&#x20AC;&#x201D; holly barret & joel lynaugh with noah, bailey & benjamin

Making Connections

Fairport's SEPTA began after parents in the district saw a need for information sharing and wanted a place where they could come together to learn from and support one another. The goal of the group is to offer a place that provides both support and advocacy. "I can share my knowledge and what I've learned as a parent so that somebody else can learn from it," says Jackie. The group currently consists of approximately 50 members who have children in grades Kindergarten through high school in the Fairport school district. "It's beneficial to be within a group of parents who are struggling with the same challenges, who want the best for their kids and to get the most from the school system but don't necessarily known how to navigate that or advocate for their children," says Holly Barret, a SEPTA member

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and mother to three boys: Noah (10), Bailey (15) and Benjamin (18). Bailey has been diagnosed with ADHD and has OT issues. He has gone through a variety of therapies that include resources and special education. "We knew something was wrong in Kindgergarten," says Holly, who wishes that the SEPTA had been around when Bailey was first diagnosed. "When you get a diagnosis you have a lot of questions and it's surprising how many people don't have the answers." A diagnosis can also be isolating. "I felt like nobody else was going through this except me," recalls Holly. She was lucky enough to find a friend with a child who had a similar diagnosis so they could counsel each other and learn from each other's experiences. continued >>>

Starting a Special Education PTA

If you are looking to start a similar group in your own district, Holly recommends finding a few like-minded parents to help you get started. You should also connect with your school's current PTA and call a neighboring school district that has a special education PTA to learn the ins and outs of getting the group organized. "We shouldn't be spending time re-inventing the wheel, we should be sharing our experiences and what works and doesn't work," says Holly. "The majority of our time is spent offering resources and building support for parents." Jackie also recommends that you talk to families and parents in the district to learn what they want and need from a special education PTA. Fairport's SEPTA routinely polls their members so they know what parents are looking for and what kind of resources and speakers to offer. The group has found that community organizations and resources are more than willing to come in to speak. Many have presentations ready, "you just have to make the call," says Holly. Special Parent Supplement

That camaraderie and support that Holly found is just what Fairport's SEPTA aims to offer − a venue for parents to share their experiences, learn, and create friendships. The group offers a network of parents who are eager to share what they've learned and gone through − what has worked and what hasn't for their own children. "If we can share stories between us and find what works for some kids and test it on our own, I feel like we can help our children unlock the potential that they have," says Holly. "We know they have that potential, but others might not see it so clearly." She adds that when faced with a diagnosis, parents may not even know what resources to ask for or where to seek help. "Just having people coming to speak on a monthly basis about an area that you may not have confidence in, or need some skills building or awareness of, is really helpful," says Holly. During the school year, Fairport's SEPTA brings in speakers from local organizations as well as from the school's administration. Last year, speakers included The Advocacy Center and Fairport's Special Education Department. "It was one of the most eye-opening two hours I sat through," recalls Holly of last year's presentation by Fairport. "We just want to be visible," says Jackie, who wants the group to become a voice for parents in the Fairport district. The group is currently working on new projects and organizing it's line-up of speakers. "The biggest goal is to make it known to Fairport that we're here."  Jillian Melnyk is the Editor for Rochester Area & Genesee Valley Parent. To comment on this story, contact her at Editor@GVParent.com

Rochester Area & Genesee Valley Parent • September 2013

travel / by Wendy Helfenbaum

Enjoying Disney with Special Kids Advance planning and on-site flexibility helps ensure a worry-free vacation

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oing on a family vacation to Walt Disney World conjures up wildly opposing emotions for many parents of children with special needs: excitement and anticipation, coupled with anxiety and dread. What kinds of challenges will we face upon arrival? How will my child react to the intense stimulation and long waiting lines at popular attractions? Should we bring our own wheelchair, or rent one? Will my hotel room be sufficiently accessible? Fortunately, an experienced Disney travel guru and the theme park itself offer up successful strategies that make it easier than ever to plan and enjoy your trip.

Do your Homework

In his more than 400 visits to Disney theme parks over the past 20 years, Bob Sehlinger has picked up a trick or two. The best-selling author of The Unofficial Guide to Walt Disney World says that knowing your child is perhaps the most important thing to consider before planning your trip.“It’s primarily a matter of being self-aware, and really understanding what your child’s difficulty is and how that’s going to impact the vacation,” explains Sehlinger. “There are kids that have disabilities that are very mellow; they’ll always do well. There are kids that are high-strung, or have autism, and they might have a rough time at Disney World, because it’s sensory overload all the time. It varies based on condition and from one personality to another. If you know how your child responds to certain situations – both fun and stressful – you can anticipate what’s going to happen.” Keeping that in mind, start by visiting the official Disney website at https://disneyworld.disney.go.com, where you’ll find comprehensive information on everything from which attractions might be frightening for children with cognitive challenges to where you can rent assistive listening devices to which restaurants permit service animals inside. When booking your trip, either through a travel agent or directly through Disney, be sure to request a copy of the Guidebook for Guests with Disabilities. It’s organized by theme park and provides a detailed overview of special services and facilities for guests with disabilities. You can also visit https://disneyworld.disney. go.com/guests-with-disabilities/ for more information.

Decisions, Decisions

Families who don’t want to drive back and forth to the theme parks may consider staying on-site at one of the several dozen Disney resorts, all of which offer special equipment and facilities for guests with disabilities, including roll-in showers, bed rails and easy transport to all the parks via buses with wheelchair lifts. To find out more, call the Walt Disney World Resort Special Reservations desk at 407-939-7807. “Disney will accommodate you in every way that they can,” notes Sehlinger, adding that it’s a good idea to read up about Disney’s attractions long before you leave on vacation, and pick ones suitable for your child’s age and temperament. Sehlinger’s book features a handy "Fright Potential Chart" that clearly describes the intensity level of each ride or show. Creating an organized plan for your family is a must, because wandering aimlessly around the Magic Kingdom guarantees that you end up seeing a whole lot of nothing, except the backs of people's heads as you stand in line for hours. “Having a good plan is primarily a matter of time efficiency,” says Sehlinger, who includes tools to reduce waiting times in his book and also online at www.TouringPlans.com. If you want to avoid huge crowds, visit Disney the week after school finishes, or the week before school begins. Turn your touring plan into a graphic display that your child can follow by using one of the interactive map tools on Disney’s Website.

Safety First

Make a plan with your children in case they get separated from you. Let your children know that they can approach a Disney employee, called a Cast Member, for help. Tuck a piece of paper with your name and cell phone number, and details about your child’s special needs into your child’s pocket. Each morning, take a photo of him or her before you head out to the park, so that if your child does get lost, you have digital photos to show security guards or local police.

A Little Extra Help

Try to be at the theme parks 45 minutes to an hour in advance of its opening and head straight for Guest Relations, located at the park entrance. There you’ll find a wide variety of tools designed to help parents of children with special needs. If your child has the type of impairment that is not immediately obvious, pick up a Guest Assistance Card (GAC), which allows easier access to various attractions while also helping to

SPECIFIC INFORMATION FOR... Visitors who use wheelchairs or have mobility difficulties • Bring your own wheelchairs or rent one for $12 per day at any Disney park. Electric Convenience Vehicles (ECVs) are also available. Each Disney resort also reserves a few wheelchairs for hotel guests. • Many of Disney’s transportation systems between parks are wheelchair-accessible. Buses can accommodate various types of wheelchairs provided it easily fits the wheelchair lift; some motorized chairs and ECVs are too wide or too long for the standard bus lift. Elevators and entrance ramps to the Monorail system are located throughout the parks and various resorts. • Wheelchair users must transfer laterally to seats for most rides, but there are some exceptions. For example, for the Animal Kingdom’s DinoLand ride, TriceraTop Spin, there’s a special dinosaur with a swing-out side and a drop-down ramp that provides access inside the vehicle for guests using wheelchairs. These unique vehicles also allow guests to manipulate the height and pitch movement of their dinosaur from their wheelchair as they circle the sky with other riders. Also, several boats inside the Jungle Cruise feature a special lift that allows access for guests in wheelchairs. Visitors with visual or hearing impairments • All Disney parks provide Braille guidebooks, audio guides, assistive listening systems, handheld video captioning and other devices to assist those with visual or hearing impairments. Stop by Guest Relations at the park entrance for a complete list of rental fees and availability. • Most theatre shows also feature reflective captioning, which uses an LED display to project personal captioning onto an acrylic panel positioned in front of the visitor. Simply let the show’s host or hostess know that you’d like to try it. • Sign Language interpretation for Disney’s live shows can be arranged a week in advance by calling the park’s information line at 407-824-4321.

continued >>> Rochester Area & Genesee Valley Parent • September 2013

Timesaving itineraries and a handy Crowd Calendar for $11.95:

avoid repeating long explanations all day long at every ride or show. Bring along a note from your child’s doctor confirming his or her needs to speed things up at Guest Relations. A GAC enables the guest and up to five companions to tour an attraction with extra assistance, such as special entrances and exits, use of a stroller as a wheelchair, alternate boarding or disembarking locations, access to quiet spots or waiting areas, and close seating for shows. Show your GAC to the first Disney cast member at each attraction when you require a little extra help. Don’t forget to pick up a free, colorful "First Visit" pin for your child along with your GAC.

Great money-saving ideas:

Crowd Control

Terrific cyber tools & books to find deals & insider tips: Online forums for families of children or family members with special needs: • http://mouse-aid.com/community/Default.aspx • www.diz-abled.com/Disney-with-disabilities-media.htm • http://pixiedustinn.com/disabilitiesfaq/DisabilitiesFAQ.html

www.touringplans.com

www.mousesavers.com www.themouseforless.com

Comprehensive general information, and a link to disability info: http://allears.net/pl/snbook.htm

More tips for families:

www.disneyworldmoms.com

Blogs for breaking news and discussions about Disney: www.disboards.com www.wdwmagic.com

Books about Disney for people with special needs: • PassPorter’s Open Mouse for Walt Disney World by Deb Wills and Debra Martin Koma (PassPorter Travel Press, 2007) • The Child with Autism Goes to Florida Theme Park & Resort Guide by Kathy Labosh (Labosh Publishing, 2005)

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“The only way to really beat the crowds is to be one of the first ones through the turnstile,” says Sehlinger, who advises riding the most popular attractions on your list first, no matter where they are located in the park. Although it may sound daunting to criss-cross the park several times a day, doing so can save up to four hours of wait time in lines, and countless tantrums from both your children and your spouse. “We recommend discussing the plan with the kids, saying ‘You’re going to get to do everything you want to do, but we’re going to have to move in this particular order, or we’re going to have to spend more time waiting in line,’” explains Sehlinger.

Training for a Marathon?

Depending on which Disney theme park you’re visiting, expect to walk up to 7 miles a day. Rental strollers can often accommodate children up to age nine, and, at under $15

per day, are a worthwhile investment for when your kid refuses to walk another step. Sehlinger also suggests regularly checking your child’s feet throughout the day. “Kids get blisters, and ignore it, and by the time Mom knows about it, it’s debilitating and can potentially affect the rest of the vacation,” he says.

Take a Break

Don’t try to do everything in one day. Very few people possess enough stamina to spend 12 straight hours at a theme park. The constant sensory stimulation that permeates Walt Disney World often leads to overload, quickly followed by major meltdowns. If your child tires easily, or requires lots of quiet time, be sure to schedule in a nice, long afternoon break away from Disney. Going back to the hotel for a nap or a splash in the pool will restore everyone’s energy. “Don’t get hung up on how many rides you fit in during a day,” cautions Sehlinger. “You just have to stop from time to time and ask, ‘What is it that would really make us, as a group, happiest right now?’, and then just follow that instinct.”

One Last Sanity-saving Tip

Sehlinger calls Disney “the vacation that fights back.” “It’s fun, but it absolutely is not relaxing,” he says. “When you come home, you’re going to have had a great time, but you’re going to be pooped. It’s really smart to come home a day early have that extra day to recuperate before going back to work or school.”  Wendy Helfenbaum is a Montreal writer and television producer. http://www.taketwoproductions.ca.

Special Parent Supplement

Rochester Area & Genesee Valley Parent â&#x20AC;˘ September 2013

health / by Julia Garstecki

Getting Active 

Students with Special Needs & Extracurricular Activities

ne of the most important aspects of school is non-academic extracurricular activities. Students who participate in extracurricular activities, such as sports, chess, music, student government, yearbook clubs, and other special interest clubs, develop talent, skill, and teamwork. By participating in extracurricular activities, students have an opportunity to make friends they would not otherwise have made during the regular school day. The importance of extracurricular activities cannot be overemphasized, particularly for students with special needs who are mainstreamed because it provides an opportunity for them to learn new skills, improve their talents and self-esteem, and develop relationships with their peers. In addition, when students with disabilities participate in extracurricular activities, other “non-disabled” students will look past one’s “disability” and focus more on one’s talents and skills. Therefore, it is important that parents understand that students with special needs have the right to participate in extracurricular activities at school. There are so many skills that a child with special needs must work on, and many of those life and academic skills are addressed at home and at school. But our children need to also learn to play and interact with other children, and develop their own hobbies. Part of our responsibility as parents is to help our children gain the tools they need to lead happy, productive, fulfilling lives as adults, and an important part of anyone’s happiness is their hobbies. These activities also can teach important social skills, help increase muscle tone and physical fitness, and target learning in fun ways. Here are some tips to help you choose

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the right extracurricular activities for your child with special needs.

Know Where to Go

There are lots of different area agencies and companies that can help you identify all of the options available to your child. Your child’s school may offer on-site programs in a setting that is familiar and comfortable to your child. Your local YMCA or other gyms may offer classes and less-competitive sports leagues that are more inclusive of children with special needs. Local churches, libraries, community centers, Boys & Girls Club, and 4-H are also other great places to inquire about local

clubs and teams. Ask parents in your neighborhood and school about other local companies, like karate and dance studios, and find out how their experiences have been. Your child might then be able to attend an activity where he already knows some of his peers.

Use Your Child’s Strengths

If your child is still working on his cooperative team skills, consider starting out with activities that offer “parallel” opportunities – swimming, track, golf, bowling, hiking, dance, photography, music lessons, art classes, and martial arts are all great opportunities, and Special Parent Supplement

KNOW THE LAW

The federal law known as Section 504 of the Rehabilitation Act requires that public schools provide students with disabilities equal opportunities to participate in extracurricular activities as their non-disabled peers. Those who enjoy reading regulations may refer to 34 CFR Section 104.37. Many schools must also comply with another applicable federal law that prohibits discrimination on the basis of disability: The Americans with Disabilities Act. Like Section 504, the regulations that public entities (which include schools) must adhere to under the Americans with Disabilities Act are stringent. Children with disabilities may also be protected by another federal law known as The Individuals with Disabilities in Education Improvement Act. This is a very important law that affords children with disabilities the right to a “free and appropriate education.” A “free and appropriate education” may include gym classes, including physical and occupational therapy, as well as any extracurricular activities that may be available to the general student population. Under these federal laws, schools must not discriminate against students on the basis of disability and may be required to implement necessary modifications or provide accommodations in order for students with disabilities to participate in extracurricular activities. If your child has a disability and is interested in participating in an extracurricular activity, but has not been able to do so, your child may be a victim of disability discrimination. It is important that you advocate on behalf of your child and speak with the school to find out why your child has not been afforded an opportunity to participate in an extracurricular activity of his or her choosing. If you are unable to make headway with the school, you may wish to consult with a child advocate or a special education attorney for assistance.

many of them offer later opportunities for more cooperative activities like relay races, group art projects, music groups, and karate sparring. Is your child highly active? Does he light up when he hears music? Does he start dancing as soon as he hears a beat? Focus on activities that will allow him to feel happy, capable and confident, and fully participate with his peers.

Meet the Adults

It is important as a parent that you be comfortable with the adults caring for your child. Find out who would be the teacher and assistants working with your child, and don’t be afraid to ask if the organization has references or background checks. Talk to families who are currently working with that adult.

Be a Spectator

Ask if you can watch a lesson or a game before your child begins to participate. If your child enjoys watching activities, bring him with you and try to get some feedback from him on what he thinks about what he is seeing. Watch his reactions to the activity – nonverbal reactions can sometimes be more telling than what they say.

Try Before you Buy

Many companies that offer lessons will let you try a free or discounted lesson before buying a package, so ask if this is an continued >>> Rochester Area & Genesee Valley Parent • September 2013

option. If you are considering enrolling your child in a sports league, try the sport with them, your family, or some friends to see if they enjoy it or have any challenges that you may want to address first. Look to see not only if they have some of the prerequisite skills they may need, but also if they seem to enjoy the activity. Keep in mind that your child may need to learn more about the activity before he really enjoys it, but hobbies should be pleasant experiences!

Practice Makes Perfect

If your child’s new hobby involves a lot of new skills, consider letting him practice parts of it at home with familiar people (i.e. hitting a baseball or catching the ball) before you introduce him to a team where he must not only perform these component skills, but also put them together with many others. Give your child opportunities to practice her new skill in between scheduled activity sessions. Ask if you can take a video of a part of your child’s lesson, as this may help with practice when you don’t have the coach or instructor there with you.

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Utilize All of Your Resources

While your child is learning the activity, she may need extra attention or instruction to keep up with the other kids. If she has a sibling or cousin who is skilled in the activity, see if they can join your child as a junior coach or assistant. Is your child receiving OT? See if there are skills they can work on in therapy that will help him gain competence in his new hobby. Does your child have an ABA therapist? ABA therapy often incorporates generalization of skills, so talk with your ABA therapist about whether they might be able to shadow your child during some sessions or incorporate similar activities into therapy.  Julia Garstecki is a teacher, freelance writer and proud mom to Drew and Stephanie. She lives in Upstate New York. See more about parenting a child with disabilities at www.juliagarstecki.com

Special Parent Supplement

Rochester Area & Genesee Valley Parent â&#x20AC;˘ September 2013

health / by Malia Jacobson

Especially Sleepy 

snoring, sleep & special needs

any children with special needs also face significant sleep challenges, a draining double-whammy that leaves millions of parents and children exhausted. The National Association of School Psychologists reports that as many as 30 percent of children may have a sleep disorder, but rates are much higher among children with special needs. Recent studies published in Pediatrics link childhood snoring and sleep apnea, or “sleep disordered breathing,” (SDB) to behavioral problems and an increased need for special education. In fact, SDB is strongly associated with conditions like Down Syndrome and Cerebral Palsy. What’s more, sleep problems can be especially devastating to children with special needs, because the resulting sleep deprivation can worsen the symptoms of their existing medical or behavioral problems, says Carole L. Marcus, MD, director CHOP Sleep Center in Philadelphia.

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Night Rumbles: Snoring & Sleep Apnea

Most children snore once in a while, and 10 percent snore most nights. But these nighttime noises shouldn’t be dismissed as “normal.” Researchers now believe that snoring is on the same spectrum as sleep apnea, a disorder characterized by pauses in breathing that cause brief awakenings. Left untreated, sleep apnea can contribute to behavioral problems and learning difficulties, even hyperactivity. A study by the American College of Chest Physicians found that children who snored

loudly were twice as likely to have learning impairment. The potential impact is so severe that the American Academy of Pediatrics recommends that all children who snore be screened for sleep apnea, says Robert Heinle, MD, of the Nemours/Alfred I. duPont Hospital for Children Sleep Lab in Wilmington, Delaware. Other SDB warning signs include sleeping in strange positions, experiencing night terrors, bedwetting, or perspiring during sleep, says Renee Turchi, MD, board-certified pediatrician with St. Christopher's Hospital for Children in Philadelphia. How to Help: The good news: nearly all otherwise-healthy children with sleep apnea respond well to having the tonsils removed, says Marcus. Back-sleeping can exacerbate snoring; regular snorers or those with sleep apnea should choose another position (“back to sleep” is still best for babies, however).

Beyond Snoring: Sleep & Special Needs

Rates of sleep apnea and other sleep troubles skyrocket for children with special needs. "About two-thirds of children with Down Syndrome have sleep apnea," says Marcus; a larger tongue, a small mid-face, and lower muscle tone make these children more prone to SDB and apnea. Children with cerebral palsy, spina bifida, and other conditions associated with low muscle tone also have higher rates of sleep apnea. According to multiple studies, over half of children with Down syndrome ages 7-11 wake during the night, and nearly 40 percent wet the bed. Children with autism can have difficulties with the circadian rhythm, the sleep-wake cycle that governs wakefulness and sleep, driving them to stay up too late, says Marcus. “Our brains regulate sleep, so if the brain is abnormal for any reason, sleep is going to be impacted, too.” How to Help: Though some special-needs sleep problems are physiological in nature, such as those related to low muscle tone, many are behavioral, such as habitual night wakings, waking too early in the morning, or fighting bedtime. “Often, parents may not set the same bedtime limits for children with special needs that they set for other children,” says Marcus. Defining clear parameters for sleep — including when bedtime occurs, where a child sleeps, and what is an acceptable hour to wake in the morning — and gently yet firmly enforcing these household rules, night after night, can help get sleep on track for children with special needs.  Malia Jacobson is a nationally published health journalist and mom. Her latest book is Sleep Tight, Every Night: Helping Toddlers and Preschoolers Sleep Well Without Tears, Tricks, or Tirades.

Rochester Area & Genesee Valley Parent • September 2013

community resources

National and Area Support Groups and Organizations 2-1-1 Finger Lakes Region ��2-1-1 or 1-877-FLNY211 www.211fingerlakes.org 24-hours a day and 7 days a week free, confidential, three-digit phone service that connects people to local specialists which can address their needs.

Autism Jam P.O. Box 245, Fairport, 14450 � 755-0010 info@autismjam.org - www.autismjam. org

292-BABY Administered by Monroe Community College �� 292-BABY (-2229) www.292baby.org/index.htm A community which links parents and child care providers with other professionals, existing community resources and each other.

Depression and Bipolar Support Alliance 320 N. Goodman St., Rochester, 14607 �� 924-7936 www.dbsaroch.org

Al Sigl Center 1000 Elmwood Ave., Suite 300, Rochester, 14620 ��442-4100 www.alsiglcenter.org Working together to develop a collaborative community solution for accessible space for programs and services to bring abilities to life. The Arc of Monroe County 1000 Elmwood Ave., Rochester, 14620 �� 271-0660 www.arcmonroe.org Arc provides a warm environment where individuals with mental and/or developmental disabilities exercise their unique talents. Arthritis Foundation 3300 Monroe Ave., Suite 319, Rochester, 14618 ��264-1480 info.uny@arthritis.org - www.arthritis. org Asperger’s Support Group Contact Beth Grier-Leva, Twelve Corners Middle School, 2643 Elmwood Ave, Brighton 14618 �� 288-4150 The Association for the Blind and Visually Impaired (ABVI) Goodwill Industries of Greater Rochester, Inc., 422 S. Clinton Ave., Rochester, 14620 �� 232-1111 or TTY 232-1698 www.abvi-goodwill.org The Autism Council of Rochester, Inc 1000 Elmwood Ave Suite 200, Rochester, 14620 ��413-1681 info@theautismcouncil.org www.theautismcouncil.org Providing high quality and individualized community integration services. We support youth, young adults, and parents of individuals with Autism Spectrum Disorder (ASD) and other developmental disabilities

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Autism Speaks www.autismspeaks.org

Dream Factory of Rochester PO Box 308, East Rochester, 14445 �� 234-0740 Rochester@dreamfactoryinc.com www.dreamfactoryrochester.com A volunteer organization that fulfills dreams for children diagnosed with critical or chronic illnesses. Compeer Rochester, Inc. 259 Monroe Ave., Rochester, 14607 ��546-8280 www.rochester.compeer.org This non-profit helps adults and children overcome the effects of mental illness through the healing power of friendship. Continuing Developmental Services Parent Support and Education 860 Hard Rd., Webster, 14580 341-4600 apopeck@cdsunistel.org www.cdsunistel.org Group for parents and family members of people with disabilities to come together for support, resources, and information sharing. CURE Childhood Cancer �� 800-443-CURE (-2873) www.curechildhoodcancer.org Easter Seals New York 103 White Spruce Blvd., Rochester, NY 14623 (585) 292-5831 ~ www.eastersealsny.org

Epilepsy Foundation of RochesterSyracuse-Binghamton 1650 South Ave., Suite 300 Rochester, 14620 ��442-4430 www.epilepsyuny.org Flower City Down Syndrome Network 2117 Buffalo Rd., Suite 132 Rochester, 14624 ��568-7421 www.fcdsn.com Food Allergies: Coping, Teaching, Supporting 31 W. Church St., Fairport, 14450 ��264-9033 www.FACTSplace.com

Future Care Planning 1000 Elmwood Ave., Suite 500 Rochester, 14620 �� 402-7840 www.futurecareplanning.org Create comprehensive plans on behalf of adults with disabilities. Hunter’s Hope Foundation P.O. Box 643, 6368 West Quaker St, Orchard Park, 14127 �� 716-667-1200 info@huntershope.org www.huntershope.org Juvenile Diabetes Research Foundation International (JDRF) 1200-A Scottsville Rd., Suite 100 Rochester, 14624 ��546-1390 www.jdrf.org/rochester Kirch Developmental Services Center Golisano Children’s Hospital at Strong 601 Elmwood Ave., Rochester, 14642 ��275-2986 www.stronghealth.com Make a Wish Foundation of Western New York 26 Corporate Woods, Suite 10 Rochester, 14623 ��272-WISH (9474) or �� 1-888-336-WISH (9474) http://wny.wish.org

March of Dimes 3445 Winton Place, Suite 121 Rochester, 14623 ��424-3250 www.marchofdimes.com/newyorg

Noogieland 255 Alexander St., Rochester, 14607 ��423-9700 info@gildasclubrochester.org www.gildasclubrochester.org Serves children with cancer or children with a family member who has cancer - making sure everyone gets the social and emotional support the need. NYS Office of Mental Retardation and Developmental Disabilities 44 Holland Ave. Albany, 12229 �� 866-946-9733 Toll Free www.opwdd.ny.gov Ontario ARC 3071 County Complex Drive, Canandaigua, NY 14424 585-394-7500 ~ www.ontarioarc.org

Regional Early Childhood Direction Center Monroe #1 BOCES 41 O’Connor Road, Fairport 14450 ��377-4660 www.monroe.edu/recdc Supporting families with children birth to 5 years by providing free information and individualized assistance. Special Olympics 1 Grove St., Suite 216, Pittsford, 14534 586-7400 ~ www.nyso.orgw

Melissa’s Living Legacy Teen Cancer Foundation 1000 Elmwood Ave, Suite 300 Rochester, 14620 ��563-6221 http://melissaslivinglegacy.org

Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) 2982 South Union St. Rochester, 14624 �� 594-4621 or �� 800-716-SOFT (-7638) barbsoft@rochester.rr.com - www. trisomy.org

Multiple Sclerosis Society Upstate New York Chapter 1650 South Ave., Suite 100, Rochester, 14620 ��271-0801 or �� 800-FIGHT-MS (344-4867) CHAPTER@MSUPSTATENY.ORG www.msupstateny.org

Find even more listing and businesses that support your family online at www.RocParent.com

Muscular Dystrophy Association 1425 Jefferson Rd., Suite 19 Rochester, 14623 �� 424-6560 www.mdausa.org National Alopecia Areata Foundation PO Box 150760 San Rafael, Ca 94915 �� . 415-472-3780 info@naaf.org - www.naaf.org

To submit your organization’s information, send e-mail to: office@gvparent. com or mail to: GVP Special Needs Resource P.O. Box 25750 Rochester, NY 14625

National Stuttering Association ��800-WeStutter (800-937-8888) info@WeStutter.org www.nsastutter.org

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