Special Needs Guide - 2011

inside

* reviews * activities * profile

6

What We Share

When it’s not only a child with a special need

Product and book reviews

Short Takes

10

Special Sports

12

The benefits of sports & recreational programs for children with special needs

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cover story

A Day in the Life

18

Reaching Milestones

22

Kevin Tubiolo shares a day in the life as a father of a son with Duchenne Muscular Dystrophy

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6

Kevin Tubiolo shares some of the successes and achivements of his son Ryan

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health

Health Notes

24

What is Stuttering?

30

Children’s Allergies & the Family Pet

34

After the Diagnosis

36

Recent reports about autism, asthma, allergies, chronic childhood illness & adhd Parents’ questions answered

Does a diagnosis mean Fido & Fluffy have to go?

What to do after your child has been diagnosed with asthma or a food allergy

* advice *

essay

Beating the Bully

28

Parenting a Child with a Disability

32

A mom of a child with special needs tackles a tough topic

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resources 40 Special Needs Resources Listings of area providers & support organizations

Advice from people who know firsthand

Learn to be an Optimist

4 tips to transform your thinking & parenting Rochester Area & Genesee Valley Parent • Special Parent 2011

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publisher’s note

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

The response was again fantastic with heartfelt comments from parents with children of all abilities.

What we have learned over the past few years is encouraging. There is 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 here at the magazine to continually provide an annual editorial guide that focuses on those support agencies, gives voice to area parents, and helps you stay educated and informed.

We offer a special thank you to the parents, especially Kevin Tubiolo for their willingness to share their stories and inspire others.

We are also incredibly proud to share with you that last year’s Special Needs section won a GOLD award for a Supplement within a Publication from the Parenting Publications of America (PPA). According to the judges at the University of Missouri School of Journalism, “A strong combination of tips and features that are well written and well edited. Stories are creative, including a feature on how to introduce art to special needs children.”

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.GVParent.com/SpecialNeeds. This new section of the website also includes an evergrowing set of current articles, topics and resources to visit and read throughout the year.

Regards,

A Special Supplement from Genesee Valley Parent Magazine

Staff PUBLISHER Barbara Melnyk mail@gvparent.com EDITOR Jillian Melnyk editor@gvparent.com GENERAL MANAGER Carol Harvey Carol@gvparent.com ACCOUNT EXECUTIVES Cynthia Goldberg, Carol Harvey, Natalee Kiesling MAGAZINE LAYOUT & DESIGN Jillian Melnyk graphics@gvparent.com

OFFICE ADMINISTRATOR Danielle Street office@gvparent.com CONTRIBUTING WRITERS John Boccacino Susan Cochrane Julia Garstecki Michael Ranard, M.Ed. Vicki Schultz Kathy Sena Kevin Tubiolo Jan Udlock Michael Welch Basic subscription rate: $25/year. Send subscription inquiries and changes to address below. Copyright 2011,

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

on the cover Ryan Tubilo A Day in the Life SN18 Beating the Bully SN28 What We Share SN6 Allergies & the Family Pet SN34 Special Sports SN12 Area resources SN40 PHOTO BY CL!X

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www.GVParent.com/SpecialNeeds

266 Alexander Street, Rochester, NY 14607 p: 585-287-5330 f: 585-287-5344 www.gvparent.com

MEMBER OF PARENTING MEDIA ASSOCIATION

Rochester Area & Genesee Valley Parent • Special Parent 2011

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profile

what we

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share

when it’s not only a child with a special need

By Jillian Melnyk

R

aising a child with special needs is a challenge; nobody can argue with that. There are emotional struggles, physical complexities, doctor and therapy appointments - it takes courage and perseverance from a parent. And it takes a lot of understanding and learning to be aware of the experiences the child is going through. But what happens when this final piece is taken out of the mix and the parent shares the disability with their child? Meet two families for which this is true, the O'Connell Family of Chili and the Gonzalez Family of Rochester.

Aimee O'Connell's oldest daughter Bridget was diagnosed at age four with PDD-NOS and has many hallmark signs of Asperger's disorder and obsessive-compulsive disorder (OCD). Aimee says her younger two children (ages four and two) show "soft signs" of symptoms on the autism spectrum including speech and motor delays but have yet to be formally diagnosed. Aimee, 38, herself has been diagnosed with Apserger's.

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MICHAEL & AIMEE WITH KERRY, BRIDGET & RORY

"In the 1970s, 'Asperger's' was not a household word, especially concerning girls," says Aimee. She was always labeled as gifted and quiet while growing up and since there was never a real problem, she was never evaluated. "I maintained good grades and did everything well except socialize. I made one or two close friends, but otherwise kept to myself," Aimee admits. Aimee says she found solace in college and graduate school where socializing became more intertwined with academics.

"After grad school, I began taking SSRI medication and saw an immediate effect on what I realized later to be obsessivecompulsive disorder. Medication took the edge off the anxiety, and for the first time I could 'feel' liked by others," says Aimee.

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“

In the 1970s, 'Asperger's' was not a household word,

especially concerning girls."

— Aimee O'Connell Aimee, who holds a Master's degree and New York State certification in school psychology, says she was always drawn to the kids with autism spectrum disorder. "It took me a few years of studying autism, attending conferences and writing treatment plans at work before I saw that I fit the description of Asperger's perfectly," she

“

My daughter's reaction looks as strong as a panic attack and the emotions are just as real. It's frustrating not being

able to change this, but it is a blessing that I understand immediately what is going on, and it does not throw me for a loop."

— Aimee O'Connell KIMBERLY & RAMON WITH ABIGAIL, ZANDER & ADRIANA

says. "It put a name on the 'defect' I felt I had as a teenager." Aimee admits that accepting her diagnosis came hard, and she did it in private. "I didn't want wellmeaning friends to suddenly feel they needed to treat me more delicately because I have some kind of problem," she says. "It has taken me eleven years to realize that I have deprived myself of true acceptance and true freedom by fiercely guarding this secret."

Because Aimee was already knowledgeable about the autism spectrum, she says her daughter's diagnosis didn't surprise or frighten her. Now, Aimee uses her own knowledge and experiences to work with her daughter. "During one of my daughter's OCD flare ups, I desperately wanted to show her the assets she has," Aimee says. "If someone had assured me in my developmental years that I was not defective, just perceptively different, I may have listened."

Their shared diagnosis is beneficial in many situations. "I understand her without her having to say anything, so she feels safe coming to me for comfort when she needs some space and does not have to explain what she needs," Aimee says.

Being a good model and showing her daughter that a situation can work out is also something Aimee does to diffuse situations. "Her reaction looks as strong as a panic attack and the emotions are just as real. It's frustrating not being able to change this, but it is a blessing that I understand immediately what is going on, and it does not throw me for a loop."

While in some ways they are similar, Aimee says she and her daughter are still very different and that their shared diagnosis can cause a lot of friction. "I am an eternal optimist; she is a perpetual pessimist. We drive each other crazy with that one!" Aimee says.

Aimee says having a support system is essential. "My husband is extremely supportive and is well aware of my own need for quiet time," she says. As advice to other parents who have special needs and are raising children Aimee says, "Recognize yourself, embrace who you are and forgive yourself before doing anything else. If we are not at peace in our own skin, we can't teach our children how to cope with their own challenges."

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amon and Kimberly Gonzalez of Rochester are both deaf and have three children, Adriana, 10, Abigail, 9, and Zander, 3, who were born severely to profoundly deaf and attend preschool and elementary school at Rochester School for the Deaf.

When Ramon and Kimberly were young, they recall wearing hearing aids.

"Our hearing parents thought it was important for us to hear the environment sounds," they say. But the hearing aids did not prove helpful and they both stopped wearing them once they entered college.

The Gonzalez children do not currently wear hearing aids and communicate via

WHAT HAS BEEN THE MOST CHALLENGING PART OF RAISING A CHILD WITH SPECIAL NEEDS?

AIMEE: “Trying to discern when to push her to keep up with the norm, and when to cut her some slack for her inborn differences. My daughter is considered higher-functioning, so she looks like most of her classmates in most situations, but she reaches her limits much more quickly than they do. It's hard sometimes NOT to push her to keep going when her senses are screaming that she has had enough. My goal is to teach her to cope with life on life's terms so that she can be successful anywhere she goes.”

KIMBERLY: “Sometimes it is hard for a deaf parent of deaf children to know how much to let them explore the world on their own. Crossing the street, going to the corner store, swimming in the public pool and riding bicycle in the neighborhood are examples of small steps that some parents worry about with their children who are deaf.”

CONTINUED >> Rochester Area & Genesee Valley Parent • Special Parent 2011

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WHAT ADVICE WOULD YOU GIVE TO OTHER PARENTS OF CHILDREN WITH SPECIAL NEEDS?

AIMEE: “I have to quote William Stillman, author of Autism and the God Connection: ‘Always presume intellect.’ This doesn't just apply to profoundly disabled or nonverbal children... it means we need to remember that our children know more than we assume. So many times I find that my daughter is wiser than I am in frustrating situations, and if I stand back and listen to her instead of trying to be the expert, we find solutions faster.

My other piece of advice is to find the right balance between pushing to fit in and allowing freedom to be different. That one confounds me daily!�

KIMBERLY: “Start at the right place to obtain an early intervention program, visit schools and see what they offer. It helps to know and understand the support choices that are available for your children and their success.�

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“

ASL/English Bilingual education is important to us as a deaf family. Our belief is to support our children to

experience the tastes of deaf and hearing worlds so that they are able to write English and communicate American Sign Language." — Kimberly Gonzalez

American Sign Language (ASL). "ASL combines hand signs, gestures and facial expressions," says Kimberly. "At home and school, our children use ASL with friends, family, staff and teachers." At school, ASL and written English are also used for instruction and interaction.

While both Kimberly and Ramon are deaf, they want to give their children a diverse upbringing. "ASL/English Bilingual education is important to us as a deaf family. Our belief is to support our children to experience the tastes of deaf and hearing worlds so that they are able to write English and communicate American Sign Language," says Kimberly. "Outside of the deaf community they should know the importance of ASL and English." Kimberly and Ramon also involve their children in a variety of activities. "We placed our daughters in the Henrietta hearing school district summer program to play and socialize with new hearing friends who are children of deaf adults (CODA). They communicate through written English or ASL," Kimberly says. Kimberly stresses the need for out of school and after school activities, both in the hearing community and within the deaf

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community. "We would advise other parents of elementary children with special needs to go to after school programs," she says. Her children attend Rochester After School Academy (RASA) offered by Rochester School for the Deaf, which provides academic, recreational, social, and character development activities for children and their families.

While each of their children is deaf, Adriana, Abigal and Zander are all different, and different from their parents, too.

"All of our children learn in different ways," says Kimberly. "They learn from watching people, reading books, and trying new things. They see so much information every day."

Kimberly's words of advice to other parents raising children with special needs can be applied to all families. "Raise children to eat well," she says. "Teach them how to make their own healthy choices for meals, and sleep enough hours to help them focus on learning new things."

Jillian Melnyk is the Editor for Rochester Area & Genesee Valley Parent Magazine. She can be reached at Editor@GVParent.com

Rochester Area & Genesee Valley Parent • Special Parent 2011

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short takes point to happy Autism affects 1 in every 110 America children. Point to Happy is the first book of its kind, specifically designed for children on the autism spectrum who benefit from visual support. This book is the perfect tool to help children express feelings and identify and recognize things around them like foods, colors, and everyday tasks. The simple photographs are clear, colorful and engaging and feature familiar objects and rituals. The book comes with a soft pointer to use, allowing children to build motor skills while holding and pointing. Point to Happy, by Miriam Smith & Afton Fraser, Workman Publishing, 2011, $19.95

high-ball hijinks "If your child has difficulty swinging – even if the issue stems from physical or sensory processing challenges – try this game that worked for my oldest son, Skyler. High-Ball involves throwing an inflated, bouncy ball toward your child's feet as he or she pumps the swing toward you. The resultant ball-flight is enticing enough for most children to want to pump harder and higher each time. Skyler had almost given up on swinging before a creative babysitter introduced him to this game.

Now, he and our younger son throw the High-Ball to each other, working on yet another difficult skill." — Vicki Schultz is a committee member for the Rochester Walk Now for Autism Speaks and lives in West Henrietta with her husband and two young sons.

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a is for asthma According to the American Lung Association, asthma is the leading chronic illness among children in the United States. The Centers for Disease Control and Prevention (CDC) reports that 7.1 million children, or roughly one in ten, suffer from asthma. UnitedHealthcare and Sesame Workshop, the nonprofit educational organization behind Sesame Street, are launching a new child health initiative: A is for Asthma, an awareness program designed to increase families' understanding and awareness of childhood asthma. The program provides simple tips and supporting resources for children and their families to recognize asthma triggers and manage asthma symptoms.

Program materials, including videos, activity sheets and a newsletter are all child-friendly and feature Sesame Street characters such as Grover and Big Bird. Materials are available in English and Spanish at sesamestreet.org/asthma

Rochester Area & Genesee Valley Parent • Special Parent 2011

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special

activities

sports

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the benefits of sports & recreational programs for children with special needs

Photo Courtesy of Special Olympics

“

Self-pride and self-worth are two of the biggest benefits our students receive. My motto is 'Those

with developmental and intellectual disabilities can do anything that you and I can do, it just might take them a little longer to do it.’" — Anne Harvey, Director of the Dazzle School of Visual & Performing Arts

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www.GVParent.com/SpecialNeeds

By John Boccacino

A

s an impressionable child growing up in the late 1940s, Anne Harvey and her family would go for rides in the family automobile, and sometimes those trips would take them along a stretch of South Avenue that contained a series of big brick buildings.

From these buildings, which featured prison-like bars along the windows, Harvey recalls hearing "piercing screams and painful cries" emanating from the souls residing inside.

Harvey, just five years old at the time, recalls asking her father if that building was a prison, but was told the facility was home to the Rochester Psychiatric Center, then home for children with mental disabilities.

Back in those days, children who were thought to have developmental disabilities were "placed into these jail-like facilities as if they were crazy, not people who desperately needed help," recalls Harvey, now a 64-year-old who currently serves as the director of the Dazzle School of Visual & Performing Arts, a center in Rochester that offers educational programs in dance, music, drama and visual arts for area adults and youth who are physically and mentally challenged.

The conditions of children living with mental and developmental disabilities have certainly improved since those days.

Instead of isolating special needs children in jail-like facilities, thanks to the efforts of organizations such as Heritage Christian Services, Hillside Family of Agencies, Special Olympics and schools like Harvey's Dazzle School, children and young adults with disabilities can participate in organized team sports, star in plays and musicals and even take culinary classes.

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The most obvious benefit is the physical activity. Any opportunity

to get these children involved with sports, and get them started on a healthy lifestyle is big."

— Robin Mitchell, Senior Program Director for Special Olympics of New York Genesee Region Since those disturbing images from her childhood of abused and ignored special needs children, Harvey has spent most of her life trying to improve opportunities for people living with mental and developmental disabilities. Through the Dazzle School, Harvey and her staff offer children and young adults a multitude of extracurricular activities.

"This is all about inclusion and giving these students the chance to learn about the arts and enjoy a hobby while also receiving an education," says Harvey, a Canandaigua resident who previously worked for Finger Lakes Developmental Disabilities Services before opening the Dazzle School nine years ago. "Self-pride and self-worth are two of the biggest benefits our students receive," she adds. "My motto is 'Those with developmental and intellectual disabilities can do anything that you and I can do, it just might take them a little longer to do it.’"

Special Olympics, another local organization dedicated to improving the lives of special needs children and young adults, has also had a profound impact on this segment of the population. From its humble beginnings in the summer of 1963, the volunteer-driven organization has afforded millions of children the chance to compete in their favorite sports in front of cheering crowds.

The movement began when Eunice Kennedy Shriver organized a summer day camp centered around sports for children

CONTINUED >> Rochester Area & Genesee Valley Parent • Special Parent 2011

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Photo Courtesy of Special Olympics

living with "intellectual disabilities" in June of 1963. Five years later, Chicago hosted the 1st International Special Olympics Summer Games, where more than 1,000 athletes converged at Soldier Field to try their hand at Olympic-style sports.

Today, the lessons of good sportsmanship, teamwork and camaraderie are

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still on display at local chapters of Special Olympics. The Genesee Region encompasses 11 counties, including Monroe, Ontario, Livingston, Genesee, Wayne, Wyoming and Yates Counties. According to Robin Mitchell, the Senior Program Director for Special Olympics of New York Genesee Region, more than 51,000

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youths participate in sports across the state, including more than 2,500 athletes in the Genesee Region of Special Olympics.

These eager youths spend hours training for their competitions – at the local, state, national and world stages – all while following a strict code of conduct that stresses good sportsmanship, proper training and competition guidelines while emphasizing personal responsibility. And at no cost to the parent or the athlete.

"The most obvious benefit is the physical activity," says Mitchell, who urges parents of potential Special Olympics athletes to get involved in their children's sports careers, whether as a volunteer coach or as a program or event volunteer.

"Any opportunity to get these children involved with sports, and get them started on a healthy lifestyle is big."

Mitchell adds that, "with the population that we serve, there are very limited opportunities for these people to participate in organized sports. Organized sports help provide our athletes with self-esteem, camaraderie and self-confidence. Those are all helpful traits that will stick with them for the rest of their lives." She says that "Special Olympians are all about breaking down those negative stereotypes and stigmas" about people with developmental disabilities.

CONTINUED >>

Rochester Area & Genesee Valley Parent • Special Parent 2011

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To find area recreational, sports, art, & visual art programs for children and youth with special needs see our listings on page 40.

Mitchell estimates there are roughly 110 training clubs in the area that offer extensive team and individualized training to willing athletes. Anyone interested in participating in a local, regional or state competition must be at least eight years old; children younger than 8 can still try out the Special Olympics' Young Athletes program, where they will learn the fundamentals of the sport while enjoying physical activity and making new friends.

Tim Rowland considers himself a big sports fan, and he is among the 2,500 athletes who attend the various sports competitions in the Genesee Region. A Special Olympian since he was eight, Tim has spent the last eight years playing soccer, basketball and golf while also trying out swimming and track and field.

During his career, Tim has accumulated countless medals and, even more importantly, he's made lifelong friendships while training with the parent-run Westside Training Club.

"I love playing my sports and I love being a part of a team," says Tim, 16. "When we're all playing (together) and we score a goal in soccer, it feels great. Playing sports (with Special Olympics) makes me feel proud of myself."

"Tim has such a variety of sports choices, it's fantastic," adds Vicki Rowland, Tim's mother and a Churchville resident.

"Tim can pick and chose which sports he wants to try, and he's so happy playing his favorite sports. His life would be totally different without Special Olympics."

John Boccacino is a freelance writer living in Webster, NY who reported on sports and local news for more than 6 1/2 years with the Democrat and Chronicle newspaper. Boccacino is a Brighton native who plays basketball, tennis, golf and softball in his free time. He enjoys reporting on a wide variety of sports topics and can often be found watching local high school sports games in his free time.

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www.GVParent.com/SpecialNeeds

Rochester Area & Genesee Valley Parent • Special Parent 2011

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cover story

a

day in the life

By Kevin Tubiolo

A

s a Father to three wonderful children — Denise, 16, Nicholas, 13, and Ryan,11 (who has Duchenne Muscular Dystrophy and is in a power wheelchair) — Kevin Tubiolo and wife Betsy strive daily to provide for each of their kids' "special" needs. Kevin recounts a typical day:

7:30 am Hear Ryan through the monitor yell, "Dad……Daaaaaaad" or receive his call from the phone on his nightstand.

KEVIN & BETSY WITH DENISE, NICHOLAS & RYAN

7:31 Yell down to Ryan in a sleepy/groggy voice: "2 minutes, just give me 2 minutes."

7:33 Sit next to Ryan in bed, remove Ryan's bi-pap mask, knee splints and heel cord braces (AFOs). Ask how's he's feeling and how he slept, to which he replies very descriptively "good."

7:40 Sit him up, position the power wheelchair next to the bed and transfer him to the chair using the ceiling track and lift. (Unless he urgently needs to get up and I manually transfer him.)

7:45 Escort Ryan to the bathroom as he greets and chases the cats, screaming their names "MYKE, DECK, SAM!" (Cats scatter.) Assist Ryan using either the lift in the bathroom or manually transferring (again, based on the urgency). While on the pot, help him change his clothes to avoid an additional transfer later.

8:00 Pour Ryan his cereal and gather his daily medications while he eats. Give him a glass of milk or juice for his combination of 10 prescription pills and vitamins/supplements. Meds include a steroid to help slow the progression of Duchenne Muscular Dystrophy (DMD), and others to regulate heart rate, anxiety, and appetite.

Supplements include Fish oil, CoQ10, creatine, Vit D and Vit B.

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8:20 Breakfast done, brush teeth, video

10:30 Teenager #1 wakens and graces us

game to begin! As much as I encourage the kids not to veg in front of the TV screen, they're going to push the limit to squeeze in EVERY last minute. Ryan wheels into his room, I turn his game on and give him about 60 minutes.

with his presence. Nick and Ryan exchange colorful insults, shadow box and smack each other until I tell them, "ALRIGHT! Knock it off." Nick eats his breakfast and they talk sports and argue over which one of them Megan Fox is going to ask out to dinner.

8:20-9:30 I tidy up a bit while Ry gets in game time. I catch up with my Facebook family, throw in a load of laundry and spend a little time goofing off with the apps/games on my phone.

9:31 Transfer Ryan from his wheelchair to the couch so he can straighten his body out. (The longer he sits in that chair, the more likely scoliosis will occur resulting in spinal surgery – PRAYING we can avoid that.) Put his left hand in his brace to help counter-act the contracture that is getting worse due to his DMD. We catch up on Sportscenter and segue into a detailed conversation about top plays, walk off homeruns, random stats and what the Tigers, Bills, Sabres or Knicks need to do to HOPEFULLY win a few games. This also gives me a chance to sneak in some snuggle time that I hope he never outgrows.

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11:00 They play together on the Xbox or Wii for about 30 minutes, giving me a chance to catch up on some emails, communications with doctors and therapists and get myself cleaned up and dressed for the day.

11:30 Get Ryan's shoes on and we all head outside, chases the cats, screaming their names "MYKE, DECK, SAM!" (Cats scatter.) Ryan rolls to the door, opens it and backs up, rolls through to the door on his elevator lift, pulls door as he backs up and rolls into the lift that he operates to get to ground level. The three of us toss around the Nerf ball, play a game of "House Rules" baseball/homerun derby with his Little League bat and mush ball.

11:50 We take a stroll to the corner store

a mile away, grab a beverage and a snack, take the long way home for about a 3 mile walk.

12:30 pm Return home and make the kids a tuna sandwich, or ham and cheese, (after explaining "No, we cannot have pizza for lunch, and no, we cannot have a box of cookies, either").

1:00 Nick takes off to play at his friends house for the day. I get Ryan to another bathroom visit before he gets on the bus for a physical therapy appointment.

1:01 Teenager #2 awakes, has a quick breakfast and is out the door with her friends for the day.

1:15-1:30 Tidy up kitchen and wash dishes from lunch while Ryan plays on his DSi. 1:30 Ryan gets on the bus for this 45 minute physical therapy session at the school. (Sessions happen three times per week.)

1:30-2:30 Run to Wegmans to get dinner and snacks for Nick's Baseball game and then have a little relaxing time at home.

2:30 Ryan gets off the bus and tells me how therapy went.

2:45 Transfer Ryan from his chair to the couch for some downtime and to straighten him out for a bit. Ryan reads Percy Jackson and I sit with him watching TV and playing Angry Birds (until he takes my phone and continues for me.)

3:30 Trip to the bathroom, transfer Ryan in and out, wash hands, and chase the cats – "MYKE, DECK, SAM!" (Cats scatter.) Then Sammie jumps up into Ryan's lap for a scratch and Ry talks to her in his cute little voice.

3:45 Snack time. Wash and cut strawberries and pour a glass of apple juice.

4:00 Nick comes home from his friend’s house. I tell him to MAKE SURE all his baseball equipment and uniform are together for his game later. Nick and Ryan play Xbox while I switch the laundry and start getting prepared for a burgers and dogs dinner.

5:00 Transfer Ryan to the couch, put on his hand brace and knee immobilizers that help work against his contractures. Ryan watches iCarly. I ask him "Really? iCarly?" He says with a laugh, "Yeah" and calls me a "nube" (part of their made-up kid language).

5:10 Betsy is home from work, Denise is home from friends, Ryan is all ready to get his braces off and I'm seasoning the burgers.

5:20 Burgers and dogs on the grill; broccoli is cooking, Nick and Denise set up for dinner while Betsy helps with dinner, and tidies up and checks the mail. Take off Ryan's braces. Remind Nick to MAKE SURE all his baseball equipment and uniform are together for his game later.

5:30 Bathroom run for Ryan; everyone washes hand and sits down for a nice summer meal.

6:00 Ryan's finished with meal, drives his plate to the sink and jumps on the computer for ½ hour. I tell Nick to grab his gear and hop in the Jeep to get him to warm-up for his 6:30 game.

Betsy and Denise clean up after dinner.

CONTINUED >> Rochester Area & Genesee Valley Parent • Special Parent 2011

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ABOUT KEVIN: What do you do when you are not running after kids?

Catching up on my sports teams, getting work done around the house, networking and goofing off on Facebook.

What is in your briefcase?

Laptop, backup daily dose of Ryan's meds, cell phone, charger, backup battery, about a dozen pieces of mail or papers that I don't need to be carrying every day, Red Bull, flash drive, folders with Ryan's medical notes and contacts, ipod charger, emergency pack of two Tylenol What books have you read recently?

I just finished Freedom: A Novel by Jonathan Franzen and A Vintage Affair

by Isabel Wolff. I am currently working on reading the book of Hebrews.

What gives you comfort?

Being home, spending time with my family and knowing that I am surrounded by a very supportive and loving group of family and friends.

Your favorite meal?

Steak off the grill, potatoes and broccoli.

What do you do when life gets stressful?

Hit the gym for an hour or do the polar opposite – turn myself off from the world and sleep it off. If neither are an option, I use my wit and goofiness to drive my kids as nuts as they drive me.

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6:05 Leave driveway with Nick.

6:06 Pull back in driveway so Nick can

That only took about 3 years off of my life.)

grab his mitt that he forgot.

8:45 Transfer Ryan into the jeep, every-

6:07 Off to the game.

one else helps load up the folding chairs, Ryan's wheelchair and the bags and head home.

6:15-6:30 Drive back, load Ryan's manual chair into the truck, grab folding chairs, sunflower seeds, beverages and the family for the game. Load Ryan into the Jeep and place his power chair in the garage.

6:32 Leave for Nick’s game.

6:33 Back in the driveway, run in the house and grab my phone that I forgot.

6:34 Leave again for Nicks game… again.

6:43 Transfer Ryan into his manual chair, Betsy and Denise grab the chairs and snacks and we find a spot to enjoy the game.

6:45-8:30 We all enjoy a nice summer evening little league game, which includes Ryan questioning the umpire several times in a very load voice ("ARE YOU KIDDING ME?"), spitting out a few hundred sunflower seed shells, checking the Tigers game a few times on my phone and relaying the score to Ryan, capturing the video of Nick's two-run double and scoring by stealing home and posting it to Facebook, and grabbing a quick ice cream. Tell Nick how proud I am of how much better his game has gotten as he grows up and matures. I throw in a little advice on base running. (Do NOT steal home if the batter isn't away and you are charging in as he swings at the pitch!

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8:55 Back home, transfer Ryan out of the jeep into his power chair, he races inside, up the lift and into the bathroom where I transfer him in and out and we wash hands.

9-9:45 Nick and Ryan play Xbox and fight over who is cooler. Betsy cuts coupons, Denise is in her room explaining all of life's tragedies to her Facebook friends and I throw on the headphones for a while and finish up some chores and goof off on the computer for a bit.

10:00 Bedtime, Nick and Denise get into their jams and brush teeth, bring Ryan through the kitchen to yell the cats' names one last time, give him his nighttime meds (4 pills) and help him to use the bathroom for the last time of the evening. Change him into his pajamas while transferring to and from the bathroom, hold him up for a moment while putting him in his chair so I can give him a big hug, get his toothpaste on his toothbrush. Ry brushes his teeth and rolls to his room. I transfer him into bed and adjust him to his comfy position. Ryan reads for a few minutes while I put on his leg braces and bi-pap mask.

Sammie jumps up on his chest and curls up purring. Lights out! Make sure the monitor is turned on next to his bed and cell phone is fully charged and within arm's reach.

10:15-MIDNIGHT Thanks to insomnia I spend a few hours plugged into my headphones again, switching laundry, feeding the animals (3 cats and a bunny), switching laundry again, talking with my wife for a few minutes until she conks out for the night, get Ryan's meds set for the next day, get his clothes prepared, spend a few minutes just staring at him as he sleeps, make sure my laptop case and badge are on the table so I can scoot right out in the morning to work. Finally get the house all locked up and lights turned off.

MIDNIGHT Check Ryan, reposition his body and his bipap mask, make sure he's covered and kiss him goodnight, go to Nick's room, kiss him goodnight and set his TV to sleep mode, say goodnight to Denise who will be up for two more hours chatting, texting and Facebooking LOL, OMG, IDK, TTYL to her friends, brush my teeth, put out clothes for the next day, kiss my wife and hopefully fall asleep by 1-1:30am.

Rochester Area & Genesee Valley Parent • Special Parent 2011

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cover story

reaching

milestones 2006-2010

W

hen Kevin Tubiolo's son Ryan was first diagnosed with Duchenne Muscular Dystrophy (DMD), Kevin says the first thing that ran through his head was, "How bad is this? Is there a chance of a cure? How will his life be impacted by this disease?" Kevin quickly learned the hard truth: no cure and a massive effect on his quality of life. Kevin was told his son would have difficulty walking by age 6, be wheelchair-bound by 10, dependent on a ventilator by 18, and have a life expectancy of only 25 years.

"Having shared custody with his mother, I was losing him half the time and with his life expectancy cut by two thirds, I came to the conclusion that I had one sixth of my child's life," says Kevin. Knowing his odds, he says it was time to do his job as a father. Since Ryan's birth, together they have made amazing achievements and had incredible successes.

"Ryan's journey through this life with Duchenne is far from complete, and my duty as a father who will stop at nothing to bring him every ounce of excitement and joy, will live on forever," says Kevin. "I am very pleased that we have had the opportunities we have to do everything we have for and with Ryan. We have certainly achieved many milestones and our journey continues stronger than ever."

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BORN 1999 By age 2, after noticing delays with his motor skills, Ryan is tested and diagnosed with Duchenne Muscular Dystrophy.

Ryan participates in the Empire State Games for Physically Challenged. He competes in wheelchair track and field, precision throwing and accuracy and other events. He earns 15 gold metals.

MARCH 2003 The year following Ryan's diagnosis, Kevin takes Nick and Ryan to Disney in Florida.

He wants to have a trip that Ryan can enjoy while he still has the ability to walk.

2002 Kevin teams up with Muscular Dystrophy Association and coordinates a charity walk in his hometown of Webster.

The "Walk for Life for DMD" is held for 3 years, draws in approximately 600 people and raises $60,000 from 2003-2005.

"It gave everyone in our family an opportunity to network and share stories and support with other DMD families," recalls Kevin.

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“

Even since Ryan has been in a wheelchair fulltime, we

still make about 2 trips per year to amusement parks like Seabreeze and Darien Lake. And with the help of his aide or other family and friends, we lift him on and off every ride he wants to go on." — Kevin Tubiolo

Just out of surgery, watching WWE wrestling, Ryan observes his hero John Cena make an appearance after returning from his shoulder surgery 6 months ahead of schedule. After screaming with excitement and rolling around as Cena wins the Royal Rumble, Ryan states, "I wish I could be there" as they announce the events for Wrestlemania 24, just 2 months away. "Wish." What is a wish? How do you grant a wish? "Well, I wasted ZERO time, making calls and writing emails to the Make-A-Wish foundation and WWE headquarters," Kevin says. The WWE and Make-A-Wish had joined forces a few months prior and a wish is granted for Ryan. The MAW foundation sends the whole family to Orlando with floor seating to Wrestlemania, a private pizza party with several of the WWE superstars and other Wish Kids, a fun filled day at Universal Studios, and a personal meet/greet with Mr. John Cena himself. Autographs, photos, and shared stories of surgery recovery make Ryan feel like he has a bond with his favorite superstar.

Ryan's condition progresses faster than expected and he loses the ability to walk at age 8.

Ryan meets with a team of specialists/doctors at Cincinnati Children's Hospital. After some evaluation, Ryan takes part in a new treatment concept combining tendon release surgery, orthotics and aggressive PT intended to “Maintain Ambulatory Status” in DMD. By no means is this a cure, but provides a temporary reversing of the affects of disease and slows the progression of muscle deterioration.

2009 At the PPMD annual conference in Philadelphia, Dr. Brenda Wong gives a presentation about the treatment that Ryan received and he is there to stand up and prove its success.

"We are huge Rocky fans, and our family had always wanted to go to Philadelphia just to run up those famous steps," says Kevin. In Philadelphia, Kevin participated in the second annual "Rocky Run," a 3 mile run through the streets of Philadelphia, completing the run at the top of those famous steps. "I came to the base of the steps after the 3 mile run to see my family waiting for me," says Kevin. "I helped Ryan stand from his chair and with every bit of energy and strength left, I assisted him to climb the very first step. Then I lifted him onto my shoulders and ran up those steps with my other children by my side." At the top, Kevin places Ryan on the last step and with everything Ryan has, he takes what is essentially his final step ever without braces, and finishes the last step on his own.

After recovery from surgery and a week of casting and physical therapy, Ryan exceeds expectation and is able to walk with the aide of KAFOs (leg braces).

The treatment is such a success, about one month later he is able to take limited steps without his braces. "This was not even expected and a wonderful blessing," says Kevin. Kevin recalls that this success helps to produce one of the happiest, proudest moments in his life.

On April 19th, 2008 he marries his wife, Betsy with his older son and daughter as groomsman and bridesmaid. Ryan, with his wheelchair in the back room, walks down the aisle as their ring bearer. Through the engagement and wedding planning, there was no thought or expectation that he would ever walk again. Many tears of joy hit the floor.

2010-2011 Ryan participates in two seasons of a Challenger Baseball. He is able to swing from his wheelchair and round the bases. He has two opportunities to play at Frontier Field.

Rochester Area & Genesee Valley Parent • Special Parent 2011

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*

health

health notes

*

recent reports about autism, asthma, allergies, chronic childhood illness & adhd

By Kathy Sena

CATCHING SIGNS OF AUTISM EARLY

A

novel strategy developed by autism researchers at the University of California, San Diego School of Medicine, called "The One-Year Well-Baby Check Up Approach," shows promise as a simple way for doctors to detect cases of Autism Syndrome Disorder (ASD), language delays or developmental delays in babies at an early age.

Led by Karen Pierce, Ph.D., assistant professor in the UC San Diego Department of Neurosciences, researchers at the UC San Diego Autism Center of Excellence (ACE) assembled a network of 137 pediatricians in the San Diego area and created a screening program for all infants at their one-year check up. Their study was published in the online edition of the Journal of Pediatrics.

"There is extensive evidence that early therapy can have a positive impact on the developing brain," says Pierce.

"The opportunity to diagnose and thus begin treatment for autism around a child's first birthday has enormous potential to change outcomes for children affected with the disorder."

The study screened 10,479 one-yearolds in the San Diego region. At their child's regular one-year check up, parents or caregivers were given a brief questionnaire called the Communication and Symbolic Behavior Scales Developmental Profile Infant-Toddler Checklist, which asked questions about a child's use of eye

SN24

contact, sounds, words, gestures, object recognition and other forms of ageappropriate communication. Any infant who failed the screening was referred to the ACE for further testing, and was reevaluated every six months until age 3.

Out of the more than 10,000 infants, 184 failed the initial screening and received further evaluation. To date, 32 of these children have received a provisional or final diagnosis of ASD, 56 of language delay, nine of developmental delay and 36 "other" - totaling a positive predictive value of 75 percent using this simple, five-minute screening technique.

"When we started giving parents the survey, I found that they listened more carefully to what I had to share with them and paid more attention to their child's development," says pediatrician Chrystal E. de Freitas, M.D., FAAP, who participated in the study. "In addition to giving me the opportunity to do a more thorough evaluation, it allowed parents time to process the information that their child might have a development delay or autism – a message no parent wants to hear. But, by addressing these concerns early, the child can begin therapy that much sooner."

The checklist is available at http://www.brookespublishing.com/store /books/wetherby-csbsdp/checklist.htm. It was designed to be administered and scored by a physician. If you have concerns about your child's development, talk with your doctor.

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MORE THAN JUST A COUGH? ASTHMA SYMPTOMS COMMON, SERIOUS IN KIDS

A

sthma is the leading cause of hospital visits and missed school days in children, according to the National Institute of Health. A chronic condition, pediatric asthma requires continual care to prevent serious, life-threatening asthma attacks. According to the Respiratory Health Association, more than 9.5 million U.S. children under age 18 are living with asthma.

"Asthma is generally characterized by excessive sensitivity of the lungs to various stimuli," says Michael Facktor, M.D., a pediatric allergy specialist at Geisinger Medical Center, which has multiple locations in Pennsylvania. "Because this condition is so prevalent in children, we encourage parents to look closely for warning signs of asthma. Your child may have more than just a persistent cough."

According to Facktor, common symptoms include difficulty breathing or rapid breaths, shortness of breath while resting or a persistent nighttime cough.

Triggers that can cause asthma include allergens such as mold, pollen and dander;

irritants such as air pollution or cigarette smoke; cold air or changes in the weather; and viral infections such as the common cold.

"Some asthma patients can breathe normally most of the time, but some children with asthma may experience mild symptoms on a continual basis, in the form of wheezing, chest tightness or coughing - often in the morning, at night or after physical exertion," says Facktor. "When exposure to triggers causes symptoms to worsen, patients experience an asthma attack that comes on quickly with severe symptoms."

If your child has asthma, know the warning signs of an acute asthma attack. These include difficulty breathing, sweating and rapid pulse.

"Fortunately, treatment is available for the long-term management of asthma," says Facktor. "Medications are often effective in reducing underlying inflammation in the airways to relieve or prevent airway narrowing. Quick-relief medications are also used to control symptoms during an attack. During a severe asthma attack, children should seek immediate medical attention."

"Asthma can have a big impact on your child's life," says Facktor.

"Fortunately, with the proper education, treatment and lifestyle, asthma doesn't have to control your child's life."

MANAGING CHRONIC CHILDHOOD ILLNESS CAN AFFECT MORE THAN HEALTH

T

oday, more children than ever survive serious chronic illness. Many thrive as young adults, but a large new study finds that for some, early illness can lead to fewer years of education, more joblessness and lower pay.

The good news is that when they grow up, these kids are just as likely to blossom socially, enjoy romantic relationships and get married as healthy kids, finds the study, which was published recently in the Journal of Adolescent Health.

Researchers, led by Gary Maslow, MD, looked at two sets of interview data from the National Longitudinal Study of Adolescent Health. The more than 13,000 participants were middle or high school students during the 1994-1995 school year. The study compared kids with childhood illnesses – cancer, heart disease, diabetes or epilepsy – with those who either became ill as adults or who had never had one of these four medical conditions.

CONTINUED >> Rochester Area & Genesee Valley Parent • Special Parent 2011

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As a group, children with long-term illness are "are at very high risk of educational and vocational problems," says Maslow, a primary-care research fellow at the University of North Carolina at Chapel Hill and a pediatrician at the Duke University Medical Center.

The study found significant differences as participants reached ages 24 to 32. Children with chronic illness were less likely to graduate from high school, attend college or graduate from college. Only 52.5 percent were employed, compared with 67.5 percent of those with no illness or adult-onset illness.

When a child becomes sick, a family's attention naturally turns to medical issues above all else. "Initially, parents are focused on obtaining appropriate medical care for their children and especially with

cancer, they worry about survival," says Martha Askins, Ph.D., psychosocial director of the Adolescent and Young Adults Program at the Children's Cancer Hospital at MD Anderson at the University of Texas. "Suddenly, usual daily activities and routines such as school take a back seat to the diagnosis and treatment of the child's illness."

However, she says, "once they've gained confidence that the treatment seems to be working well, and they really see that there's hope, (parents) want their child to have as normal an experience as possible, socially and educationally."

Serious illness can interrupt or interfere with school in a number of ways: absences, debilitating medical treatments or disabilities that result from the disease.

"Children with cancer have periods

of time that may go from six months to two years where they can't actually go to school because their immune system is compromised. So it's very important to try to help the children find ways to maintain their academic development and momentum for studies, even though they're not able to participate in traditional classrooms," Askins says. "They may receive homebound education or they may participate in a hospital school program. Even more common are online programs such as virtual school."

If your child has a serious chronic health condition, talk with his doctor about how to help further your child's social and educational development as much as possible while also treating the condition.

COMPUTER-BASED PROGRAM MAY HELP RELIEVE SOME ADHD SYMPTOMS IN CHILDREN

A

n intensive, five-week working-memory training program shows promise in relieving some of the symptoms of attention deficit hyperactivity disorder (ADHD) in children, a new study suggests. Researchers found significant changes for students who completed the program in areas such as attention, ADHD symptoms, planning and organization, initiating tasks and working memory.

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"This program really seemed to make a difference for many of the children with ADHD," says Steven Beck, co-author of the study an associate professor of psychology at Ohio State University. "It is not going to replace medication, but it could be a useful complementary therapy." The study findings were published recently in the Journal of Clinical Child & Adolescent Psychology.

The researchers tested software developed by a Swedish company, Cogmed, in conjunction with the Karolinska Institute, a medical university in Stockholm, Sweden.

The software is designed to improve one of the major deficiencies found in people with

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ADHD – working memory.

Working memory is the ability to hold onto information long enough to achieve a goal. For example, you have to remember a phone number long enough to dial it. Students have to remember the passage of a book they just read to understand what they're currently reading.

"Working memory is critical in everyday life, and certainly for academic success, but it is one of the things that is very difficult for children with ADHD," Hanson says.

The study involved 52 students, ages 7

to 17, who attended a private school in Columbus, Ohio that serves children with learning disabilities, many of whom also have an ADHD diagnoses. All the children used the software in their homes, under the supervision of their parents and the researchers.

The software includes a set of 25 exercises that students had to complete within 5 to 6 weeks. Each session is 30 to 40 minutes long. The exercises are in a computer-game format and are designed to help students improve their working memory. For example, in one exercise a robot speaks numbers in a certain order, and the student has to click on the numbers the robot spoke, on the computer screen, in the opposite order.

"At first the kids love it, because it is like a game," Puffenberger says. "But the software has an algorithm built in that makes the exercises harder as the students get better. So the children are always challenged."

Parents of the participating students completed measures of the children's ADHD symptoms and working memory before the intervention, one month after treatment and four months after treatment.

Results showed that parents generally reported that their children improved in attention, working memory,

planning and organization, and in initiating tasks following intervention. The overall number of ADHD symptoms was also positively affected. These changes were evident both immediately and after treatment and fourt months later.

On individual measures, between one-fourth and one-third of the children showed clinically significant progress – in other words, enough progress to be easily visible to their parents.

Beck says this is the first published study testing this software in the U.S. One of the strengths of the study is that it used a very typical sample of children with ADHD – other studies in Sweden had excluded children who were on medication. Most children with ADHD are on some kind of medication, so it helps to know how this intervention works in these cases, he explains. In this sample, 60 percent of the students were on medication. The results showed the program was equally effective regardless of whether they were on medication.

"Medication for ADHD does not help directly with working memory, and the training program does, so it can be useful," Beck says.

The researchers now plan on extending the work of the study by using more objective measures of children's progress after using the program.

VITAMIN D AND KIDS' ALLERGIES: RESEARCHERS FIND A CONNECTION

A

study of more than 3,000 children shows that low vitamin-D levels are associated with a higher likelihood that kids will develop allergies, according to a paper published in the Journal of Allergy and Clinical Immunology.

Researchers from Albert Einstein College of Medicine of Yeshiva University in Bronx, New York conducted the study and looked at the vitamin-D levels in blood collected in 2005 and 2006 from more than 3,100 children and adolescents and 3,400 adults. One of the blood tests assessed sensitivity to 17 different allergens. They measured levels of Immunoglobulin E (IgE), a protein made when the immune system responds to allergens.

When the resulting data was analyzed, no association between vitamin-D

levels and allergies was observed in adults. But for children and adolescents, low vitamin-D levels correlated with sensitivity to 11 of the 17 allergens tested, including both environmental allergens (e.g., ragweed, oak, dog, cockroach) and food allergens (e.g., peanuts). For example, children who had vitamin-D deficiency were 2.4 times as likely to have a peanut allergy than were children with sufficient levels of vitamin D. The research shows only an association and does not prove that vitamin-D deficiency causes allergies in children, cautions Michal Melamed, M.D., M.H.S., assistant professor of medicine at Einstein and senior author of the study. Nevertheless, she says, children should certainly consume adequate amounts of the vitamin. "The latest dietary recommendations calling for children to take in 600 IU of vitamin D daily should keep them from becoming vitamin-D deficient," she says.

Rochester Area & Genesee Valley Parent • Special Parent 2011

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essay

beating the bully

*

a mom of a child with special needs tackles a tough topic

By Julia Garstecki

A

lthough I appear to be watching my daughter with her friends, I keep a discreet eye on my son Drew. Now that he is older, I have to stop hovering over him, but it's a hard habit to break. He has taken a ball over to a group of boys, which still catches me by surprise, and it's a great reminder of how far he's come. A year ago this never would have happened! I steal glances to see how he interacts with the boys.

He smiles, offers the ball, and gives it a pretty good kick. A game has started. I relax.

It doesn't take long before my heart starts pounding and my defenses go up. The other boys fail to let him have the ball back. They act like they are going to give him the ball, and then they kick it to somebody else. A sort of 'keep away' game ensues before they go back to regular soccer. When lots of bodies head for the ball, my son recoils and walks away from the action. Okay, so he doesn't have the "killer

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ANDREW (IN THE MIDDLE WITH THE STRIPED SHIRT) WITH HIS SISTER AND NEIGHBORHOOD FRIENDS. LEFT TO RIGHT: CHRIS RUEDINGER, GRANT AND HARRISON BRADISH

instinct," but that doesn't bother me. He's laughing, so I remind myself he's having fun. And then the name calling starts, followed by teasing, and yet he's still laughing. He doesn't understand, and I can't decide if I want him to or not. His ignoring their behavior causes most of the boys to get on with the game, but one boy keeps at the teasing, "Stupid! stupid!

You're so stupid."

Frustrated, I call Drew over and tell him to bring the ball, happy that now they have nothing to play.

Nonverbal until four, my son still struggles with language. Primarily, he might say one thing but mean another or repeat the same phrases over and over. In social situations, where conversation moves

www.GVParent.com/SpecialNeeds

“

Nonverbal until four, my son still struggles with language.

Primarily, he might say one thing but mean another or repeat the same phrases over and over. In social situations, where conversation moves fast, his delayed processing and recall puts him at a real disadvantage.�

fast, his delayed processing and recall puts him at a real disadvantage. Also, until he has practiced a skill to the point of muscle memory, he struggles in basic sports (though I do too!). Academically, there are pretty simple strategies to help him.

Socially, however, it's totally different.

I'm not the only mom struggling with a child who tends to get picked on and won't (or perhaps can't?) fight back.

Bullying has become such a problem that there are now bullying laws in effect. And kids with disabilities, no matter how minor or severe, are becoming victims in larger numbers. According to John Hoover and Pam Stenjhem it's called disability harassment. Their article, "Bullying and Teasing of Youth with Disabilities: Creating Positive School Environments for Effective Inclusion," offers schools and parents advice on how to stop disability harassment, including creating an environment that "is aware of and sensitive to disability concerns and harassment." They encourage the community to discuss disability harassment and report it, teach students about it and help to bring awareness to it.

I am all for any help to prevent bullying, but as a former teacher and a parent of a child with a disability, I don't know how much the schools can do to help the situation. I think back to those moments in the park, when I watched my son get called a baby, and how the moms witnessing the event did nothing. Why do they do that? They saw the exchange. How could they watch their children be so cruel and just sit beside and watch?

“

I want both of my kids to understand what bullying looks like,

and how to stand up to bullies, especially when the victims don't understand or can't stand up for themselves.�

I don't want to be the mom that fights my kids' battles, as I think that can only promote the problem. Kids just get sneakier with their bullying, saving it for when parents and teachers can't see.

And I'm not saying that all of these moms let it go. Perhaps they discussed it on the car ride home or saved their comments for later, but in my experience, teachable moments are just that – moments. I want them to teach their child to apologize, or better yet, not to do it in the first place. I have become bolder in speaking to these kids, asking, "Is there a reason we need to find your parents?" or "Does that make you feel better, to call that kid stupid?" I've also asked other parents, who clearly witnessed a nasty exchange if they are comfortable with what just happened, though I admit these direct questions makes me nervous because I hate confrontation.

We've worked very hard to manipulate friendships for my son – choosing friends, creating situations to help him practice social skills. We explain how teasing looks and what he should say if he

feels people aren't being very nice. We aren't teaching him to fight, but I admit I've told him that if he ever gets hit, he can hit back and I won't get mad.

Fortunately, I have some friends with older children who have had some experience with disabilities, whether it's dyslexia, autism, or processing disorders. These boys come over and play with Drew and treat him like one of the boys. I don't want people to treat him with white gloves -- he can be stubborn, cheat, or lie about things.

These boys don't let him get away with it, and I'm glad. But I know they give him extra time to get his thoughts across, or they repeat themselves if they see he's confused. In a sense, they are training him for those playground moments, because we all know kids tease each other and that it's a fact of life.

I want both of my kids to understand what bullying looks like, and how to stand up to bullies, especially when the victims don't understand or can't stand up for themselves. My son is definitely not a fighter, and though there are times I wish he was more assertive and competitive in sports, I'm more proud that when it comes to the playground, he's the first to invite all people to play, the first to ask if somebody is okay, and the first to offer a smile. In that sense, he'll always be a winner.

Julia is a contributing writer to Rochester Area & Genesee Valley Parent. She lives in Bemus Point, NY with her husband and two children. For more about raising a child with a disability, visit www.juliagarstecki.com

Rochester Area & Genesee Valley Parent • Special Parent 2011

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health

what is

stuttering?

*A

parents’ questions answered

By Susan Cochrane

s many as 5 out of 100 children between three and twelve years of age stutter. One percent of the adult population (1 in 100) and over three million Americans stutter.

Stuttering does not discriminate between socio-economic boundaries, nor between race and culture.

It is however, three times more likely to occur in boys than girls. By age twelve, this ratio increases 4/1.

What exactly is stuttering? What does stuttering look like? How do you know if your child is stuttering, or if the interruptions you hear are developmental? What do you tell your child about stuttering? How do you respond to a person who stutters?

With the recent release and acclamation of the movie, The King's Speech, the questions posed above have become more common among parents. More people are asking questions and more people are reaching out for help!

What is stuttering?

First, "stuttering characteristics" are the result of what is happening or what has happened inside the brain of a person who stutters. Stuttering, most likely, results from multi-factorial variables. Research has confirmed that stuttering has genetic links.

Genetics alone account at least 50 percent of people who stutter. Advances in tech-

SN30

nology have improved brain-imaging equipment enough so that scientists have been able to identify differences within areas of the brain that control speech and language, auditory abilities and speech motor functioning of people who stutter versus those who do not. Following stuttering onset, most often between ages of 3-4 years, environmental factors may serve to perpetuate the problem. Stuttering is often accompanied by other areas of weakness such as difficulties with articulation and language or other concomitant problems.

Stuttering is known for its variability and unpredictability. Especially during its early development, the behavior may wax and wane, and at times, seem to disappear all together. This is often the reason parents report they have done nothing to help their child sooner. Stuttering is frequently undiagnosed and often misdiagnosed even by professionals in the speech pathology field. Characteristics of stuttering differ from person to person and no one person stutters in the same way. Stuttering also changes over time.

What does stuttering look like?

Stuttering is composed of affective, behavioral and cognitive variables. Affective variables include feelings the person who stutters has about himself, others and life based on his experience of stuttering.

Behaviors include those things people who stutter do. People who stutter may become "stuck" and unable to get a sound out or they may hold onto a particular sound such as, "shshshsh-shopping." A person who stutters may repeat sounds and words.

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FOR MORE INFORMATION www.stutterhelp.org www.westutter.com www.stutteringspecialists.org A person who stutters my refrain from speaking, avoid social situations and change words or topics. The cognitive piece of stuttering includes what you know, and what and how you think about yourself based on your experience with stuttering. These thoughts are the messages you send yourself and are most often unconscious.

How do I know if my child is stuttering, or if the interruptions I hear are developmental?

If you or your child are concerned about stuttering, seek help from a specialist in the area of stuttering/fluency disorders such as a Board Recognized Specialist in Fluency Disorders. Some more considerable danger signs include stuttering longer than 3-6 months, family history of stuttering and male gender.

What do I tell my child about stuttering?

If your child is having difficulty executing speech, assure him that you are taking care of it. Validate his concern with soothing words such as, "That sounds like it was a bit tricky to say." "Everyone has trouble

talking sometimes." "Mommy and Daddy are taking care of it."

Do not ignore stuttering. When children are young (preschool), you may want to use friendly and meaningful words such as "bumps" or "bumpies" for stuttering. These types of labels may mean more to a young child than the label "stuttering." As children reach school-age, moving towards the label "stuttering" is more appropriate.

If your child does not stutter, but you would like to know how to explain the disorder to your child, you may describe stuttering as a difference in the brain. Explain to your child that it is not his fault. A person who stutters is the same as anyone else except for the "bumps" or interruptions in their speech.

How do I respond to a person who stutters?

Wait calmly and patiently for the person to finish what he would like to say. Do not speak for him. Do not rush or interrupt.

Maintain normal eye-contact. People who stutter know what they want to say. It may take them a bit longer to complete the message.

Stuttering is a highly misunderstood and misdiagnosed disorder. The best thing parents can do for their child who may be stuttering is to get educated themselves so that they may be their child's best advocate.

Susan Cochrane is Board Recognized as a Fluency Specialist. She has worked in the public schools, as an adjunct professor and currently operates Freedom To Speak, her private practice, exclusively treating people who stutter.

Rochester Area & Genesee Valley Parent • Special Parent 2011

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advice

parenting a child with a disability

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advice from people who know firsthand

arents naturally question their skills. Am I too strict?

Not strict enough? Should I make him stick with baseball or should I let him quit? If you have a child with a special need, you may experience a heightened level of insecurity. How much should I push? Is a certain behavior an effect of the disability, or is that a personality issue?

It's hard to know the right thing to do, especially if you do not have experience with disabilities and/or don't know anybody who has one. Below, adults with disabilities offer their perspective on living with a disability and share some parenting tips:

STEPHANIE MAYBERRY blogs about her life with Asperger's Syndrome and insists parents not push children to do something they are not ready to do in hopes of making them “normal.�

"You may feel inclined to make them fit in a 'normal world,' but in a way you take away a piece of who they are‌and that there is something wrong with them," she says. Not all kids (disability or otherwise) want to be social or thrive in social situations. If they want to be social then help them by practicing social skills and providing opportunities to do so, but if they are not interested in joining with groups, respect that. Otherwise, focus on SN32

“

The advice I would give to any parents of children with disabilities is to always be

By Julia Garstecki

social skills as a means of necessary communication, such as turn taking, identifying moods, and instigating play.

patient and supportive."

Encourage your child to do their personal best. MICHAEL BULLING , the 2011 Kenneth Shaw Graduate of the Year from Goodwill Industries International, is known for his strong work ethic and his enthusiasm. An employee at SeattleTacoma International Airport, Michael believes that all people should work hard to "succeed at your highest level, whatever that is. Don't give up, don't give in."

Michael has cerebral palsy and found his job through Goodwill Industries International, a nonprofit organization that helps people with disabilities find employment. His mother was very supportive and held Michael to high standards, which he now holds for himself.

He hopes to someday work as a consultant for companies to hire more people with disabilities.

GABE TRUJILLO emphasizes the important roll his parents played in his success. As a child suffering from asthma, Gabe became sick and ended up in a coma. As a result of Hopkins Syndrome (a rare form of Polio in asthmatics), he is now a quadriplegic. Although news that their son would be spending his life in an electric wheelchair may have been shocking, Gabe says his parents stayed positive.

"They never seemed to be fazed by it," he recalls. "They were positive, upbeat, and

www.GVParent.com/SpecialNeeds

— Gabe Trujillo

supportive through everything." Gabe followed suit, and though fearful at first, he learned to "take it in stride" and he says he is determined to live his life, the way he wants.

Gabe's message is an important one.

Some parents, upon discovering their child has a disability (mild or severe), may become fearful and allow the disability to become the dominant feature in the home.

This may be normal at first, as therapy and the fear of the unknown can certainly be emotional. Over time, however, remember that your children are watching your actions and emotions. Energy is better served by staying positive and proactive.

No child is one thing, and they are definitely not their disability.

"The advice I would give to parents of children with disabilities is to always be patient and supportive," Gabe offers.

"Each child deals with a disability differently, but as long as you show compassion and are dedicated to helping your child overcome adversity and live the life he wants, your child will live a very meaningful and successful life."

Julia is a contributing writer to Rochester Area & Genesee Valley Parent. She lives in Bemus Point, NY with her husband and two children. For more about raising a child with a disability, visit www.juliagarstecki.com

Rochester Area & Genesee Valley Parent • Special Parent 2011

SN33

* children's allergies health

& family pets

*C

does a diagnosis mean fido and fluffy have to go?

By Michael J. Welch, MD

ats and dogs are among the most frequent causes of allergies. If your child is sensitive to other allergens, it is likely that with a pet – especially an indoor pet – in the home, he or she will develop an animal allergy sooner or later.

SN34

“

Be sure to let your child's

Contrary to what many people teachers know of your believe, it's not just animal child's animal allergies to avoid hair or fur that causes asthma and allergies in sensitive difficulties with small animals that are youngsters. While hair or fur sometimes kept as school residents, or may be a problem for some, with animals that other children may bring dander – the fine scales of dead skin that animals noron classroom visits.” mally shed – and saliva can often be more potent sources of difficulties. Cats and dogs attachments to the pet. lick people who pat them, thus passing on Finding out that a beloved pet is a loads of allergens. They also groom themtrigger for a child's asthma confronts selves by licking and nibbling, leaving an many families with wrenching choices. allergenic saliva coating on their fur.

The best course – although not a simple Cats are commonly more allergenic or a pleasant one – is to find a new home than dogs. Although certain breeds of for the animal. However, for a child dogs are said to be less allergenic than whose asthma is under control with medothers, studies don't support this claim. ications and environmental controls, it Comparisons of dogs also show wide may be enough to keep the pet permadifferences in allergenicity between nently outside. individual dogs of the same breed.

Dogs and cats aren't the only culReptiles, fish, and amphibians are prits. Small house pets such as mice, rats, not generally causes of allergy. rabbits, hamsters, and gerbils are occaWhen family history sional sources of allergens, contributing makes it likely that a baby or to the chronic airway inflammation of young child will develop allerasthma. If you decide to keep any of gies, it's best to postpone adoptthese as a pet despite your child's allering a pet for several years until gies, confine the animal strictly to its you are certain that your child cage, clean the cage daily, and keep the is not allergic. However, in cage away from your allergic child's the case of an animal that room. A youngster with allergies should has been part of the family not take part in cleaning the cage or carsince before the arrival of a ing for the pet. child with allergies, deciBe sure to let your child's teachers sions can be more difficult, know of your child's animal allergies to especially when older chilavoid difficulties with small animals that dren have formed strong

www.GVParent.com/SpecialNeeds

Here are some other ideas to try to reduce shedding of allergenic particles and hair and keep saliva-coated hair and dander from collecting in the household dust: • Sweep, dust, and vacuum frequently. • Weekly bathing of the pet in warm water has also been shown to lower the allergenic potential of cats and dogs, including those that never venture outside. • Frequent brushing may also help to make an animal less allergenic. • Be sure to keep any pet strictly out of your allergic child's bedroom and play areas. • Mattress covers, air cleaners, and carpet removal are also useful. are sometimes kept as school residents, or with animals that other children may bring on classroom visits.

A household pet may be unjustly blamed for causing allergy symptoms.

Don't automatically banish Fido to the doghouse unless the results of skin testing or a specific IgE blood test (sometimes referred to as RAST) suggest that your child has an animal allergy.

Occasionally, symptoms that seem to be caused by an animal are, in fact, caused by other allergies. What happens is that pets explore outdoors, then come back into the house with a load of pollens and outdoor mold spores on their coats. Every time the hay fever sufferer pats the pets, an invisible cloud of allergens is stirred up, triggering symptoms.

So, while every family must make the decision about pets when a child displays allergy symptoms, make sure the pediatrician and/or allergist help you understand the options before getting rid of Fido or Fluffy.

Michael J. Welch, MD, FAAAAI, FAAP, CPI, is the editor of Allergies and Asthma: What Every Parent Needs to Know, 2nd Edition, published by the American Academy of Pediatrics. Dr. Welch is co-director of the Allergy and Asthma Medical Group and Research Center in San Diego, CA, and clinical professor at the University of California, San Diego School of Medicine. Read more about the book at www.HealthyChildren.org.

Rochester Area & Genesee Valley Parent • Special Parent 2011

SN35

*

health

after the

*

diagnosis

what to do after your child has been diagnosed with asthma or a food allergy

By Jan Udlock

A

fter your child has been diagnosed with a serious food allergy or asthma, many parents wonder what to do next. "The diagnosis of an allergy or asthma is different than hearing your child has a cold because it is has ongoing issues that can be very unpredictable," says Dr. Saundra Dalton-Smith, physician, and mother of a son with allergies.

"At first I felt like it was the end of the world," says Liz, mother of a three-yearold son who has a nut allergy. "As I've learned more and connected with other parents of kids with nut allergies, I've felt more hopeful. I know with knowledge and preventative measures, we can do a lot to help reduce the risks for our son."

Be prepared that spouses sometimes react differently to a diagnosis. The important thing is to be sure you and your partner have open communication about the diagnosis. Talk it over and listen to each other's concerns. If at all possible, have both parents attend doctor's appointments.

Become an Expert You are your child's advocate. Become informed about your child's disease. Read about it online, in medical journals and at the various allergy and asthma websites.

SN36

Research the medicines your child is taking and educate family and friends and anybody who will be providing childcare, too.

Keep a medical journal for your child where you can write out questions when they come to mind so you can refer to them at your child's next appointment.

Keep all medical records together in one file. Do not be afraid to ask questions until you get a clear understanding of the situation.

"I worried about the long term effects of medications," says Maggie, mother of a daughter with both food allergies and asthma. "I can handle the diagnosis and even the physical trouble, but have a harder time giving medicine everyday."

Have an Action Plan An action plan can be put together to help the child effectively manage their life. It is a set of guidelines that help plan and prepare for potentially difficult situations. A list of teachers and family members who will be responsible for your child need to be informed and can be part of the action plan. The plan should also include a list of food triggers or asthma triggers and phone numbers to contact in an emergency.

Support "Concentrate on getting advice from other parents of special needs children. If other people give you advice, assess their level of expertise on the topic and weigh it accordingly," says clinical psychologist and moth-

www.GVParent.com/SpecialNeeds

“

Concentrate on getting advice from other parents of special needs children. If other

people give you advice, assess their level of expertise on the topic and weigh it accordingly." — Sheela Raja, PhD clinical psychologist and mother of four-year-old child with severe food allergies er of a four-year-old child with severe food allergies, Sheela Raja, PhD. Let others help you. It's really important to know that you're not alone.

Remain calm because your child will look to you for a reaction about how severe the situation is. Talk about their fears and questions. Be honest with your answers to their questions. Remember, too, do not make your child feel bad about their situation.

Mom Self-Care Mothers are notorious for not taking care of themselves. Yet, you can take better care of a child if you are well rested, eating balanced meals and taking a multivitamin. Take time to de-stress and have fun and get out and move. You're modeling a healthy lifestyle for your child as well.

Parents need to be honest with their child, however they need to not discuss their own fears and anxieties about the disease in front of the child. These conversations should be reserved for private conversations among themselves or with other peer adults.

“

As I've learned more and connected with other parents of

kids with nut allergies, I've felt more hopeful. I know with knowledge and preventative measures, we can do a lot to help reduce the risks for our son." — Liz, mother of a three-year-old son who has a nut allergy

Other Siblings Non-allergic siblings can often feel jealous of the attention parents give to their sibling. Parents can let their child know there is something special about every child. "Focus on ways to include them and make them feel special with alone time based on their interests," says Raja.

When asked if she'd do anything differently now that her children are older, Tonya, asthmatic herself and mom of three children diagnosed with asthma, says "I would have researched more and done things such as allergy testing earlier. With each diagnosis, I learned something new."

Children should feel empowered and not victimized by their disorder. "Focus on giving them the tools they need to enjoy life with allergies and asthma, rather than dwelling on the limitations of the disease," says Dalton-Smith. Above all, trust your instincts because your child is depending on you.

Jan Udlock is a freelance writer and a mom of five. She blogs at Imp3rfect Mom

Rochester Area & Genesee Valley Parent • Special Parent 2011

SN37

*

advice

learn to be

an

optimist

*

4 tips to transform your thinking & your parenting

By Michele Ranard, M.Ed.

S

ome days it’s just plain easier to be an optimist than others. Take for instance, the lazy July afternoon when the house is clean, the kids are frolicking in the sun, and the only dilemma is what to serve for lunch. Crown me the optimism queen. But dreary chilled weeknights when everyone needs help with school work, the kids are screaming, there's not a clean dish or smile in the place, and the evening news confirms it: the world is going to…

Well, Your Highness needs an attitude adjustment.

The Need to Change Our Minds Psychologist Martin Seligman, pioneer of positive psychology and author of Learned Optimism: How to Change Your Mind and Your Life, writes "Pessimists tend to believe bad events will last a long time, will undermine everything they do, and are their own fault." Pessimism is about feeling helpless and habitually believing misfortune is our fault.

Does this sound like you?

On the other hand, Seligman writes "Optimists believe defeat is just a temporary setback, that its causes are confined to this one case." Most importantly, he says pessimists can LEARN to be optimists by learning new thinking skills.

The reason it is so important to learn more optimism is not so we can delude ourselves and continue on in a dream world. Becoming a more optimistic thinker

SN38

“

When we overestimate our helplessness, other forces will take control and shape our

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children's future."

— Martin Seligman, psychologist and author of Learned Optimism: How to Change Your Mind and Your Life

pays off because "our thoughts are not merely reactions to events; they change what ensues." The implications for parenting our children are vast because "when we overestimate our helplessness, other forces will take control and shape our children's future."

Dwell on What

Xis Going Right.

Re-focus. Instead of pondering the temporary unfortunate events of the day, re-orient your perspective to all that's going right. Think of that wise quote: "Happiness is not having what you want, it's wanting what you have." Decide what it means for you. Reflect on the specialness and value of your children and family in the scheme of things.

48 hours 'til impact. Want to try something powerful and HUGE? We all go through periods of distress where we obsess and get stuck in commiserating. Try this: if you are going to obsess negatively over something, give yourself a limit of just 48 hours. Two days to rant, vent with safe friends, and resolve the matter within

yourself. Then let it go. No more obsessing about that issue allowed. It's gone because you are learning to become an optimist.

Be a Friend to Yourself.

YIt's okay to be kind to you. Make sure

you are regularly doing nice things for yourself and taking breaks to ease the daily grind. For me, these breaks occasionally involve chocolate. For you it may be a trip to the spa, a lunch with the girls, or a simple manicure. Your physical and emotional health will influence your level of optimism and how you cope. When your coping skills are strong, you will be a better model for your kids so such kindness to yourself really will benefit them!

See the Big Picture.

Z'Lose everything' exercise. It's so impor-

tant to not get bogged down in the trivial and lose hope. Try this exercise: imagine everything you cherish most-your children, family, pets, home, photos, belongings-are suddenly stripped away in a single moment. It's all gone. You are completely alone. Feel this emptiness and loss down to your bones. Let yourself sense the absence of security, love, and laughter. Allow the feeling of barrenness to pierce you and penetrate your heart for a few moments.

Then imagine that in one stroke, every single one of your treasures is returned to you-absolutely all of it resumes its place unharmed. And all this is yours this very moment. Bask in the glow of your riches.

Connect With Optimists.

[Surround yourself with optimistic company.

Life is hard. Relationships and parenting are tough. But sharing with positive thinking friends and family lightens the load.

Make plenty of connections with optimistic caring people who make you laugh and see the glass as half full. Better yet, seek others who see it overflowing! Be lifted by their encouragement and hope, then pay it forward in your parenting. Glow with optimism and watch not just your thoughts, but the events of your life improve.

Michele Ranard has a husband, two children, and a Master's Degree in counseling. She has a blog at hellolovelychild.blogspot.com.

Rochester Area & Genesee Valley Parent • Special Parent 2011

SN39

Resources Activities & Programs. . . . . . . . . . . . . . . . . . . . . . . . 40 Advocacy Servies. . . . . . . . . . . . . . . . . . . . . . . . . . . 40 Day Care & Child Care . . . . . . . . . . . . . . . . . . . . . . 40 Education & Learning Programs. . . . . . . . . . . . . . . . 41 Health, Medical & Evaluations . . . . . . . . . . . . . . . . . 41 Legal & Financial Services . . . . . . . . . . . . . . . . . . . 42 Professional Services . . . . . . . . . . . . . . . . . . . . . . . . 42 Programs & Services . . . . . . . . . . . . . . . . . . . . . . . . 42 Support Groups & Organizations. . . . . . . . . . . . . . . 44

Activities & Programs Cobblestone Arts Center 630 Crowley Rd. Farmington, 14425 . . . . . . . . . . . . . . . . . . . . . . . .398-0220 www.CobblestoneArtsCenter.com If your special education student is aging out of school, we offer an artsbased day program for adults with disabilities. We build confidence and self esteem through visual arts, music, dance, and theater. Also performance opportunities and community enrichment activities exist. Medicaid waivered.

We offer transportation.

Blue Ridge Music Therapy Center 800 East Ridge Road , Rochester, 14612 . . . . . . . . . . . . . . . . . . . 303-0066 www.trinityassistance.org The Blue Ridge Music Therapy Center is one of Trinity Assistance programs that serve to promote and empower individuals with special needs by providing quality music therapy and creative arts programming for people all ages. Blue Ridge offers a variety of services including music therapy sessions, school-based programming, adapted music lessons, homebased consultation, transitional programming, specialized classes, and group sessions.

The Gymnastics Training Center 2051 Fairport Nine Mile Point Rd., Penfield, 14526 . . . . . . . . . . . 388-8686 gtc@frontiernet.net - www.GTC-Rochester.com The Gymnastics Training Center of Rochester's state-of-the-art, 22,000 square foot, fully matted and carpeted facility offers several year-round Special Needs Programs. Options are available for students who are hearing impaired, blind and visually impaired. We also offer a Special Olympics training & competition program. We are also now offering an autistic program for students ages 3 and up. GTC believes that all children deserve an opportunity to participate in the wonderful sport of gymnastics, and look at disabilities as possibilities.

Heritage Christian Stables Owned and operated by Heritage Christian Services 1103 Salt Rd. (P.O. Box 200), Webster, 14580 . . . . . . . . . . . . . . 872-2540 info@heritagechristianservices.org - www.heritagechristianstables.org Find us on Facebook (Heritage Christian Stables) Therapeutic riding program providing riding lessons for people with special needs led by certified instructors. Applicants must be age four and older.

Application/evaluation required prior to acceptance into program.

Day/evening lesson times available. The 13-acre site offers programming rain or shine in indoor and outdoor arenas. Program accredited and instructors certified by Professional Association of Therapeutic Horsemanship International (PATH, Intl).

Hochstein School of Music & Dance 50 N. Plymouth Ave., Rochester 14614 . . . . . . . . . . . . . . . . . . . . 454-4596 Hochstein at Canandaigua, 435 East Street, Canandaigua 14424 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 396-3778 www.hochstein.org Improve your quality of life and enjoy a variety of music therapy interventions in a nurturing atmosphere, designed to address the physical, emotional, cognitive, communication, and social needs of individuals of all ages.

SN40

www.GVParent.com/SpecialNeeds

Special Needs Resources & Area Providers Programs include individual lessons, on- and off-site group sessions, senior citizen handbell choirs and choruses, wellness offerings, various ensembles, Music Lab classes, and individual assessments.

Rochester Fencing Club, LLC 777 Culver Rd., Rochester 14609 . . . . . . . . . . . . . . . . . . . . . . . . .654-6047 www.RochesterFencing.com We serve youth with learning and developmental challenges. Visit our website, come in, or call for more information on how to get started with fencing.

Special Olympics 1 Grove St., Suite 216, Pittsford, 14534 . . . . . . . . . . . . . . . . . . . . . 586-7400 www.nyso.org

Advocacy Services The Advocacy Center 590 South Avenue, Rochester, 14620 . . . . . . . . . . . . . . . . . . . . . . 546-1700 or . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1-800-650-4967 www.advocacycenter.com ~ www.specialedparentcenter.org Information, advocacy and service coordination for individuals with disabilities and their families. Educational workshops for individuals, families and groups on many disability-related topics available. Interactive workshops for organizations and schools to increase their effectiveness working with individuals with disabilities and their families exist. Workshop catalog available online.

Berkowitz, M.Ed., J.D. Legal Representation and Consultation 6605 Pittsford-Palmyra Rd., Suite E-10, Fairport, 14450 . . . . . . . . 421-9094 Joyce Berkowitz provides legal representation and consultation to parents of disabled children, preschool through grade 12, on Special Education issues including school disciplinary actions. She welcomes the opportunity to advocate at Committee on Special Education meetings, represents parents at due process impartial hearings and at ALL levels of appeal.

Center for Autism and Related Disorders, Inc. (CARD) Service Region: Monroe County 6 N. Main St., Suite 110, Fairport, 14450 . . . . . . Toll Free: 1(855) 345-2273 info@centerforautism.com - www.centerforautism.com We diligently maintain a reputation as one of the world’s largest and most experienced organizations effectively treating children with autism, Asperger’s Syndrome, PDD-NOS, and related disorders. Following the principles of applied behavior analysis (ABA), we develop individualized treatment plans for your child.

Day Care & Child Care Child Care Council, Inc 595 Blossom Road, Suite 120, Rochester, 14610 . . . . . . . . . . . . . .654-4720 TTY… . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..654-1224 www.childcarecouncil.com Special Needs Programs include child care referrals (including confirmed vacancy checks), technical assistance for parents and caregivers plus caregiver access to loaned equipment/toys specifically designed for special needs children. The Council is your community resource for all early care and education issues, programs and business start-up. WE DO THAT! Daystar for Medically Fragile Infants 47 Lochnavar Pkwy., Pittsford, 14534 . . . . . . . . . . . . . . . . . . . . . . 385-6287 www.daystarhome.net Daystar for Medically Fragile Infants is a nursing supervised day and respite program for children up to 3 years of age. The Daystar for Medically Fragile Infants home is specifically designed to support families whose vulnerable babies require care above and beyond the capabilities of traditional child care. Open Mon.- Fri. from 7:30am to 5:30pm.

Expressive Beginnings Child Care A division of Heritage Christian Services, 875 Commons Way, Rochester, 14623 . . . . . . . . . . . . . . . . . . . 340-2077 info@expressivebeginningschildcare.org www.expressivebeginningschildcare.org Find us on Facebook (Expressive Beginnings) and Twitter (ExpBeginnings)

Care for infants/toddlers, preschool, pre-k, full-day kindergarten, wrap-around care and school-age summer program. Staff is trained to empower and celebrate children of all abilities. Teachers stay with same group of children through age 3; internet monitoring helps parents be part of their child’s day; fingerprint recognition enhances security. On the Pieters Family Life Center campus.

Education/Learning Programs Augustin Children’s Center 3399 Winton Road South, Rochester, 14623 . . . . . . . . . . . . . . . 334-6000 www.cprochester.org Your child can benefit from our many services delivered at our center, in your home, at school or in the community. We offer Early Intervention Services, Preschool, Physical, Speech/Language, Occupational and Music Therapies and Individualized Adaptive Services. Call or visit our web site for information or to tour our facility.

Communication Center for Hearing & Speech & STARS Preschool 380 Cedarwood Office Park, Fairport, 14450 . . . . . . . . . . . . . . . . 223-5090 www.communicationctr.com CCHS is a NYS Department of Education and Department of Health approved agency that provides special education, speech, occupational and physical therapy services for children birth - 5 years of age. STARS is a preschool program for children with typical and/or delayed development - locations in Gates, Fairport and Webster.

Hope Hall 1612 Buffalo Rd. Rochester 14624 . . . . . . . . . . . . . . . . . . . . . . 426-0210 www.hopehall.org Hope Hall provides an opportunity for children in grades 3 through 12 who struggle in traditional classrooms to become successful lifelong learners.

Hope Hall’s nurturing, non-threatening, creative atmosphere encourages students to take risks in learning and helps them reverse the cycle of academic failure.

LDA Life and Learning Services 339 East Ave., Suite 420, Rochester, 14604 . . . . . . . . . . . . . . . 263-3323 info@LDARochester.org - www.LDARochester.org Since 1963, LDA has been helping families access appropriate educational supports for their children who are struggling in school or who have learning disabilities, ADD/ADHD or other developmental disabilities.

Educational consulting, individualized transition services, college coaching, life coaching, employment support, community workshops and information and referral services are offered.

Health, Medical & Evaluation Dr. Maria Aslani-Breit, D.D.S., PLLC Pediatric Dentistry, 1655 Elmwood Ave., Suite 120, Rochester, 14620 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 427-8620 Our mission is to provide specialized and comprehensive care for children from infancy through adolescence, including those with special needs in a fun, safe and state of the art environment with a focus on prevention and education for the families.

Bright Start Pediatric Services 149 N. Main St., Fairport, 14450 . . . . . . . . . . . . . . . . . . . . . . . . . 377-2230 www.brightstart.biz Bright Start provides therapy services and evaluations for children ages birth to five. Services are provided in Monroe, Ontario and Wayne Counties and include speech/language, occupational and physical therapies, special education, developmental playgroups, psychological and social work and counseling services. Our “whole child” approach generates successful results for each child and their family.

Marcy A. Bush Ph.D. 95 Allens Creek Road Building 1, Suite 324 Brighton 14618 . . . 241-0031 Providing psychotherapy for children, adults and families. Most insurances accepted.

Elmwood Pediatric Group 919 Westfall Rd., Bldg. A. Ste. 015, Rochester, 14618 . . . . . . . . 244-9720 1000 Pittsford-Victor Road, Pittsford, 14534. . . . . . . . . . . . . . . . . 381-3780 www.elmwoodpediatrics.com The Elmwood Pediatric Group has a 65 year history of nationally recognized excellence in pediatric care. Our practice is available 365 days a year and our group is on call 24/7. Our Pittsford-Victor Road office offers morning walk-in hours 6 days per week. Our Westfall Rd. office is located in the Clinton Crossing Medical Complex and offers walk-in hours Mon Thur from 5:30 - 6:30 PM. Flower City Pediatrics / Kristen M. Christian, M.D. 900 Westfall Rd., Ste. 3C , Rochester, 14618 . . . . . . . . . . . . . . . . 244-5510 www.flowercitypediatrics.com Dr. Christian is a board-certified pediatrician who has more than 11 years of experience providing comprehensive health care for children and adolescents in the Rochester area.

Patti Follansbee, Ph.D., LMFT Family Therapist 1441 East Ave., Rochester, 14610 . . . . . . . . . . . . . . . . . . . . . . . . 234-4081 Therapy is available for individuals, couples, and families with a wide variety of issues and concerns. Family life stresses including aging, health changes, mental health, military, relationships, fertility, work, sexuality, and general life stress can be addressed. Couple’s help for relationship problems and marriage enrichment are available.

Rochester Childfirst Network 941 South Ave., Rochester, 14620 . . . . . . . . . . . . . . . . . . . . . . . 473-2858 www.rcn4kids.org Rochester Childfirst Network (RCN) is more! A Preschool. A Place for Children with Special Needs. An After-School and Summer Day Camp for school age children. A Resource for Child Care Providers. A Leader in Early Education for over 150 years. Nationally Accredited. Serving Children 18 mos-12 years.

Freedom To Speak 8619 North Shore Dr., Honeoye, 14471 . . . . . . . . . . . . . . . . . . . . 329-0616 freedomtospeak@frontiernet.net - www.stuttertherapy.com Freedom to Speak is a specialized speech therapy practice dedicated to treating people of all ages who stutter. Susan Cochrane (owner) is a licensed Speech and Language Pathologist and is Board Recognized as a Specialist in treating stuttering. Traditional and Intensive Programs available.

Rochester School for the Deaf 1545 St. Paul Blvd., Rochester, 14621 . . . . . . . . . . . . 544-1240 voice/TTY www.RSDeaf.org With New York State Regents-level educational programs, outreach services, and cultural support, Rochester School for the Deaf is a private, tuition-free school specializing in the education of children with hearing loss. RSD has built successful futures for deaf and hard of hearing children and their families since 1876. Visit us online.

Goodman Pediatrics 500 Helendale Rd., Suite 200, Rochester, 14609 . . . . . . . . . . . . 473-7028 www.goodmanpeds.com Nothing is more important than the health of your child. That’s why our experienced staff takes pride in providing services in a caring manner on the phone and in the office. Our Doctors offer personalized health care to best suit your family’s needs from infancy through college years.

Stepping Stones Learning Center 41 Colebrook Dr., Rochester, 14617 . . . . . . . . . . . . . . . . . . . . . . 467-4567 Info@steppingstoneslearning.com - www.steppingstoneslearning.com Stepping Stones Learning Center strives to be the advocate and leader in the development and implementation of inclusionary services for children of all ages and backgrounds through the design of programs that meet the child’s ever changing needs. Classroom programs provide a unique learning environment for children with and without special needs.

Dr. Marcy Hartle, M.D. 3629 East River Rd., W. Henrietta, 14586 . . . . . . . . . . . . . . . . . . 292-6893 tmasfuller@aol.com - www.marcyhartlemd.com Dr. Marcy Hartle opened her solo pediatric practice because of her desire to supervise every level of care for her patients.

Her wonderful staff consists of Laura Baker FNP, Sheila Wolf RN, Sharon Woodward LPN, Isabel Kolgut Kerr, David Wolf and Jolana Babacek.

Rochester Area & Genesee Valley Parent • Special Parent 2011

SN41

Pediatric Therapy Services of CP Rochester 3399 Winton Rd. South, Rochester, 14623 . . . . . . . . . . . . . . . . . . 334-4330 www.cprochester.org Pediatric Therapy Services (PTS) serves children from birth through age 18, working in consultation with physicians, health care providers and educational professionals. We offer Occupational, Physical and SpeechLanguage evaluation and treatment as well as Assistive Technology services. PTS also has a fully accessible heated therapy pool.

Carol I. Reinhardt, Ph. D., Licensed Psychologist (formerly of Lockwood Psychological Svcs., PC) 481 Penbrooke Drive, Suite 5 , Penfield 14526 . . . . . . . . . . . . . . 678-4773 Providing psychological services for adults, children, and families. Most insurances accepted.

Rochester Hearing & Speech Center 1000 Elmwood Ave. #400 - Rochester, 14620 . . . . . . . . . . . . . . . 271-0680 3199 Ridge Rd. W. - Greece, 14626 . . . . . . . . . . . . . . . . . . . . . . . 750-2140 1170 Ridge Rd. - Webster, 14580 . . . . . . . . . . . . . . . . . . . . . . . . . 872-8073 info@rhsc.org - www.rhsc.org RHSC provides comprehensive evaluations/interventions to address speech, language and learning needs of children to age 21, and hearing evaluations and hearing aides for all ages. In addition, specialty evaluations and ongoing programs are available to address spoken language processing, social skills, reading, writing, spelling and childhood apraxia of speech.

Legal & Financial Services Richard Kroll, ESQ 2425 Clover Street, Rochester, 14618 . . . . . . . . . . . . . . . . . . . . . . 271-4470 Practice covers Trusts, Estates, Wills, Probate, Asset Protection, Elderlaw and Special Needs Planning. Located In a convenient suburban area.

MassMutual Financial Group Financial Architects Special Care Planning Team . . . . . . . . . . . . . 399-8367 600 Clinton Square, Rochester 14604 www.financialarchitectsupstate.com Our SpecialCare Program works to empower families by giving them the information that they need to make choices for their special needs children to help ensure that their strategies will not impact benefits from government programs. We also provide appropriate referrals to further assist families with their unique situations.

Parker Law Office 2425 Clover St., Rochester, 14618 . . . . . . . . . . . . . . . . . . . . . . . . . 224-2425 www.parker-law-office.com Parker Law Firm focuses on issues relating to family and divorce, education law, and discrimination/employment rights, in the contexts of litigation, collaborative law, arbitration, and mediation. We take the time to listen with sensitivity and focus on your goals. At the same time, we will aggressively protect your rights.

Professional & Business Services Red Stone Studios 626 County Road 27, Pittsford, 14534-3717 . . . . . . . . . . . . . . . . . . 383-4529 www.redstonestudio.com Red Stone Studios provides families with an opportunity to capture those special smiles and expressions that make your child unique. Having worked with Day Star and the Special Olympics, we understand that caring and patience are a must when working with children with special needs. We shoot on location and/or in the studio, whichever fits your needs.

Programs & Services 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.

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Center for Autism and Related Disorders, Inc. (CARD) Service Region: Monroe County 6 N. Main St., Suite 110, Fairport, 14450 . . . . . . Toll Free: 1(855) 345-2273 info@centerforautism.com ~ www.centerforautism.com CARD diligently maintains a reputation as one of the world’s largest and most experienced organizations effectively treating children with autism, Asperger’s Syndrome, PDD-NOS, and related disorders. Following the principles of applied behavior analysis (ABA), we develop individualized treatment plans for your child.

Clinical Associates of the Finger Lakes 590 Fishers Station Dr., Suite 130, Victor, 14654 . . . . . . . . . . . . . . 924-7207 2765 Buffalo Road Suite 1B, Rochester, 16424 . . . . . . . . . . . . . . . 924-7207 www.clinassoc.com Our exceptional staff of highly qualified speech-language pathologists, special educators, physical therapists, occupational therapists, social workers, and school psychologists provides evaluation and therapeutic/educational services to children to meet the needs of each child and family we serve.

CDS, Inc. 860 Hard Road, Webster, 14580 . . . . . . . . . . . . . . . . . . . . . . . . . . 341-4600 www.cdsunistel.org CDS is a world-class human services organization which supports more than 1,500 children and adults with developmental disabilities in pursuit of their personal dreams. CDS provides Residential, Employment, Transitions and Day Habilitation Services. CDS offers Family Support Services that include: Service Coordination, Support Groups and Recreation Services, specializing in Autism.

Easter Seals New York 103 White Spruce Blvd., Rochester, 14623 . . . . . . . . . . . . . . . . . 292-5831 www.eastersealsny.org Easter Seals New York provides exceptional services to ensure that all people with disabilities or special needs and their families have equal opportunities to live, learn, work and play in their communities. Our ServiceFirst Pledge - Our Customers’ needs come FIRST in all that we do, every day. WHATEVER IT TAKES! Grace Community Services 1786 Penfield Rd, Penfield 14526 . . . . . . . . . . . . . . . . . . . . . . . . . 672-2749 www.gracecommunityservices.com Since 1987, our family-focused agency has been providing individualized and compassionate services to both our residents and community members.

Through faith and caring, we touch lives and help maximize potential. GCS operates Individualized Residential Alternatives, At-Home Residential Habilitation, and Medicaid Service Coordination. Call or visit us online today.

Happiness House 731 Pre-Emption Rd., Geneva 14456 . . . . . . . . . . . . . . . . . . 315-789-6828 5415 County Road 30, Canandaigua, 14424 . . . . . . . . . . . . . . . . . 394-9510 www.happinesshouse.org Happiness House is the leader in services provision for children with disabilities and adults with brain injuries in the Finger Lakes region. Happiness House operates three center-based programs that provide a variety of educational, therapeutic, recreational and family support service options. These programs serve more than 1,000 children and adults.

Heritage Christian Services 349 W. Commercial St., Suite 2795, E. Rochester, 14445 . . . . . . 340-2000 info@heritagechristianservices.org - www.heritagechristianservices.org HCS supports 1,500+ children and adults with developmental disabilities through residential home, service coordination, respite and day programs. Inducted into the NYS Office of People With Developmental Disabilities COMPASS program, it is identified as one of the state’s top service providers. Programs: Pieters Family Life Center, Expressive Beginnings Child Care, Springdale Farm, Heritage Christian Stables and Heritage Hollow.

Mental Health Association Better Days Ahead Family Support Network, A Family Run Service of the MHA 320 North Goodman St. Rochester, 14607 . . . . . . . . . . . 325-3145, ext. 131 www.betterdaysahead.org Better Days Ahead, a service of the Mental Health Association, provides support for families raising children with mental health diagnoses and behavioral challenges. Programs consist of Parent and Teen Support Groups, Parenting Classes, Individual Family Support, Information and Referral to Services, Educational Advocacy, and IDEA 2004 Training Classes.

Ontario ARC 3071 County Complex Drive, Canandaigua, 14424 . . . . . . . . . . . . 394-7500 www.ontarioarc.org Ontario ARC is a non-profit organization that provides personalized services, supports and programs for people with developmental disabilities. The agency’s many supports include: The Autism Center, counseling, guardianship, job coaching & placement, play therapy, recreation & respite, residential, service coordination, as well as school to adult transition.

Pieters Family Life Center A premier program of Heritage Christian Services, 1025 Commons Way, Rochester, 14623 . . . . . . . . . . . . . . . . . . . . 487-3500 info@heritagechristianservices.org - www.pietersfamilylifecenter.org A health and wellness facility for people of all ages and abilities, PFLC recognizes each person as a unique individual with needs and opportunities for growth in multiple dimensions. Offering affordable fitness memberships, various traditional and creative therapies, a state-of-the-art HydroWorx 2000 fitness and therapy pool, fitness classes, programs for youths with/without disabilities and more.

UNYFEAT Upstate New York Families for Effective Autism Treatment . . . . . 248-9011 contact@unyfeat.org - www.UNYFEAT.org UNYFEAT is a 501(c)3 not-for-profit organization dedicated to supporting individuals with Autism Spectrum Disorder and their families by expanding and enhancing opportunities to improve quality of life. Visit our website for more information about our social, recreation and life skill education programs, support services and membership options.

For more Special Needs Resources, Articles and Information Visit www.GVPARENT.com/SpecialNeeds

Rochester Area & Genesee Valley Parent • Special Parent 2011

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National and Area Support Groups and Organizations

To submit your organization’s information, send e-mail to: office@gvparent. com or mail to: GVP Special Needs Resource 266 Alexandar Street, Rochester, NY 14607

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.

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.

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.

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.

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 Autism Jam P.O. Box 245, Fairport, 14450 . . . . . . . . . . . . . 755-0010 info@autismjam.org - www.autismjam.org Autism Speaks www.autismspeaks.org Depression and Bipolar Support Alliance 320 N. Goodman St., Rochester, 14607 . . . . . . . . . . . . . . . . . . . . . . 924-7936 www.dbsaroch.org

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March of Dimes 3445 Winton Place, Suite 121 Rochester, 14623 . . . . . . . . . . . . . . . . . . . . . . 424-3250 www.marchofdimes.com/newyork Meeting Extraordinary Moms Out (MEMO) Erin Beyers erinbeyers@gmail.com Melissa’s Living Legacy Teen Cancer Foundation 1000 Elmwood Ave, Suite 300 Rochester, 14620 . . . . . . . . . . . . . . . . . . . . . . 563-6221 http://melissaslivinglegacy.org

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.

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

CURE Childhood Cancer . . . . . . . . . . . . . . . . . . . . . . . . 800-443-CURE (-2873) www.curechildhoodcancer.org

Muscular Dystrophy Association 1425 Jefferson Rd., Suite 19 Rochester, 14623 . . . . . . . . . . . . . . . . . . . . . . 424-6560 www.mdausa.org

Epilepsy Foundation of Rochester-SyracuseBinghamton 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

National Alopecia Areata Foundation PO Box 150760 San Rafael, Ca 94915 . . . . . . . . . . . . . . . 415-472-3780 info@naaf.org - www.naaf.org National Stuttering Association . . . . . . . . . . . . . . . . . . . . 800-WeStutter (800-937-8888) info@WeStutter.org - www.nsastutter.org 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 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.

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