Carter Calcano – Jan 6, 2012
(T21, ASD/VSD/PDA repair 2.23.12)

WELCOME TO HOLLAND by
Emily Perl Kingsley c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life
I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and
Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

GET CONNECTED
Community and support are vital in this journey . Friends and family can only help so much, seek out other
Down syndrome families. New York City has a wonderful, caring network.
BAMPODS Support Group , contact Margie Rosado ( Margie.Rosado@cqbwp.com
)
Gigi’s Playhouse http://www.gigisplayhouse.org/location-NewYork.asp
National Down Syndrome Society www.NDSS.org
- An organization created to benefit people with Down syndrome and their families through national leadership in education, research, and advocacy.
National Down Syndrome Congress http://www.ndsccenter.org/ - A network of local and regional groups across the country formed of parents, families, and self-advocates that holds a national convention each summer.
Down Syndrome Community NYC listserve
If you would like to subscribe to this group:
1. visit http://groups.yahoo.com/group/dscnyc/join
-OR-
2. send email to dscnyc-subscribe@yahoogroups.com
Down Syndrome Advocacy Foundation (Long Island) http://www.dsafonline.org/
The Association For Children with Down Syndrome http://www.acds.org/
Long Island Communites of Practice http://www.licop.org/
Down Syn Forum http://www.downsyn.com/ - A support board for parents of babies and children with Down syndrome.
Down Syndrome: Health Issues http://www.ds-health.com/ - An information site maintained by Dr. Len
Leshin, M.D., F.A.A.P., and father to a son with Down syndrome.
Trisomy 21 Online Community http://www.trisomy21online.com/ - A support board for parents of babies and children with Down syndrome.
The Arc of the United States (ARC) http://www.thearc.org/ - The largest grassroots organization of and for people with intellectual and developmental disabilities.
Baby Center Bulletin Boards, Down syndrome http://community.babycenter.com/groups/a315/down_syndrome
Baby Center Bulletin Boards, Down syndrome pregnancy http://community.babycenter.com/groups/a14515/down_syndrome_pregnancy
Down Syndrome Pregancy http://www.downsyndrompregnancy.org/ - Down Syndrome Pregnancy, Inc. is a
New Jersey charitable corporation which provides information and support to expectant parents preparing for the birth of a baby with Down syndrome. You can download a copy of Diagnosis to Delivery: A Pregnant
Mother’s Guide to Down Syndrome from this site.
NY Special Parent – various resources for families with special needs children http://www.nyspecialparent.com/

RESOURCES FOR CAREGIVERS:
Healthcare Guidelines, as recommended by the NDSS http://ndss.org/en/Healthcare/Healthcare-Guidelines/
BLOGS: are a peek into the lives of other DS families. It is nice to know you are not alone. Many of them are a good resource for DS info as well. http://www.medicalassistantschools.org/top_down_syndrome/ (list of top 30 DS blogs) http://skiingthroughlife.wordpress.com/ http://billandria.blogspot.com/ (reviews educational resources) http://noahsdad.com/ (the wife is a pediatrician) http://confessionsofthechromosomallyenhanced.blogspot.com/ www.mystubbornmiss.com/ www.kellehampton.com/
American Airspace (Michael Berube): http://www.michaelberube.com/index.php/weblog
Baxter Sez (Alison Pipmeir): http://piepmeier.blogspot.com/
EDUCATION/DEVELOPMENT: downsed.org
have some good videos and brochures, also their own literacy program
Zero to Three http://www.zerotothree.org/
National Association for the Education of Young Children http://www.naeyc.org/ readeez.com
- fun videos talktools.com for oral motor
Enchanted learning: http://www.enchantedlearning.com/Rhymes.html
ASSISTIVE TECH:
United Cerebal Palsy has a SHARE Library where you can borrow equipment http://www.ucpnyc.org/site/c.buIWJcNSKnL6G/b.6561479/
JCC free assistive tech consults on Sundays with Mark Surabian email: athelp@me.com
RECREATION :
There are a ton of fun recreation activities with typical peers as well as ones especially for children with special needs. Ask your service coordinator for more information.
Achilles Kids http://www.achillesinternational.org/programs/kids/overview
Wendy Hillard Dance http://www.whfny.org/
Daniel’s Music Foundation http://www.danielsmusic.org/
Long Island Lacrosse www.longislandblues.org/files/specialneedslacrossespring20122.pdf
Special Olympics New Jersey http://www.sonj.org/
Sprout www.gosprout.org/ (also have a film festival)
Excel Play at Chinatown YMCA iPAD APPS
The iPad is a great learning tool especially since it is interactive and visual. The are some great augmentative communication apps. Many apps intended for children with autism are also good apps for children with DS.
Special Words by Special iApps http://itunes.apple.com/us/app/special-words/id451723454?mt=8&ls=1
Special Stories by Special iApps http://itunes.apple.com/us/app/special-stories/id478550473?mt=8&ls=1
Memory Fun By BarneApps AS http://itunes.apple.com/us/app/memory-fun/id413868533?mt=8&ign-mpt=uo%3D4

Woodbine House has a whole section of DS books:
BOOKS http://www.woodbinehouse.com/Down-Syndrome.29.0.0.2.htm
Books for Parents:
Babies with Down Syndrome: A New Parents' Guide by Susan J. Skallerup
Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives by Kathryn Lynard Soper and
Martha Sears
The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery by Kathryn
Lynard Soper and Patricia E. Bauer
A Good and Perfect Gift: Faith, Expectations and a Little Girl Named Penny by Amy Julia Becker
Down Syndrome Parenting 101: Must-Have Advice for Making Your Life Easier by Natalie Hale
Early Communication Skills for Children With Down Syndrome: A Guide for Parents and Professionals by Libby
Kumin
Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic by Martha Beck
Life As We Know It: A Father, a Family, and an Exceptional Child by Michael Bérubé
Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome by
Jennifer Graf Groneberg
The Shape of the Eye: Down Syndrome, Family, and the Stories We Inherit (MEDICAL HUMANITIES SERIES) by George Estreich and Marcia Day Childress
A Special Kind of Hero: Chris Burke's Own Story by Chris Burke
Count Us In: Growing Up with Down Syndrome (A Harvest Book) by Jason Kingsley and Mitchell Levitz
Choosing Naia: A Family's Journey by Mitchell Zuckoff
The Memory Keeper's Daughter: A Novel by Kim Edwards
Books for Kids:
My Friend Isabelle by Eliza Woloson and Bryan Gough
My Friend Has Down Syndrome (Let's Talk About It) by Jennifer Moore-Mallinos and Marta Fabrega
We'll Paint the Octopus Red by Stephanie Stuve-Bodeen and Pam Devito
The Best Worst Brother by Stephanie Stuve-Bodeen
In Jesse's Shoes by Beverly Lewis (not specific to DS but special needs in general)
My Name Is Jacob, I Have Down Syndrome (Freckle Books) by Laurie L. Beetler, Shelly Brucker, Wendy
McClure and Maria Holubek
My Sister, Alicia May by Nancy Tupper Ling and Shennen Bersani
I Can, Can You?
by Marjorie W. Pitzer
Be Quiet, Marina!
by Kirsten Debear, Laura Dwight and Kirsten DeBear
Books for Teens:
Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters by Brian Skotko and
Susan P. Levine
The Sibling Slam Book: What It's Really Like To Have A Brother Or Sister With Special Needs by Don Meyer and David Gallagher
Films and Television:
Life Goes On - http://www.imdb.com/find?q=life+goes+on&s=all
Girlfriend - http://www.imdb.com/title/tt1470859/
Monica and David - http://www.imdb.com/title/tt1553066/
Yo Tambien - http://www.imdb.com/title/tt1289449/
What’s Under Your Hat?
Outsider: A Film about the Life and Art of Judith Scott - http://www.imdb.com/title/tt0756698/fullcredits#cast

EARLY INTERVENTION (EI):
Infants and toddlers from birth to three years old who have a disability, a developmental delay or a physical or medical condition that has a high probability of resulting in a developmental delay, such as Down syndrome, may be eligible for free Early Intervention (EI) services.
Get started with early intervention as soon as possible. As they say, “the earlier the better.” It is better to contact the agency directly rather than going through EI. If you go through EI they will assign you to an agency and quality of agencies vary widely. It is best to get a recommendation for an agency.
The Early Intervention Program: A Parent’s Guide for Children with Special Needs – Birth to Age Three
- http://www.health.ny.gov/publications/0532/
For additional information about Early Intervention in NYC, please contact:

The NYC Early Intervention Program 212-219-5219

Resources for Children with Special Needs, Inc. 212-677-4650

Advocates for Children of NY 212-947-9779

Sinergia / The Metropolitan Parent Center 212-643-2850

United We Stand 718-302-4313

YAI 212-418-0323.

Early Childhood Direction Center 212-746-6175
Once you’ve started the EI process, ask your service coordinator about getting on the waiting list for
MEDICAID WAIVER. Most people use OTSTAR and SKIP.
Aquatic therapy has many benefits for our children. It is possible to get it funded through EI if you find an OT or PT that is willing to do it. But it is difficult to find someone.
If you want to go through private means you can check out Angelfish Therapy http://angelfishtherapy.com/ they meet on Mondays at St. Bart’s pool 109 East 50th Street
You could also expose your baby to the pool yourself and use a neck ring under adult supervision
(http://www.waterwaybabies.com/)
YAI and Bank St also have weekly playgroups that can be approved through EI.
If you have nutritional issues you can get a nutritionist and feeding specialist through EI.
If you need help accessing resources or have some extenuating circumstances you can request social work services through EI.

RECOMMENDED PEDIATRICIANS:
Dr. David Fernandes
126 95th Street
Brooklyn, NY 11209
(718) 238-7842
Dr. Allison Gati
Westcare Pediatric
241 Central Park West
Between 84th & 85th Street
212.787.1788
Dr.Palmo Pasquariello, Dr. Brovender (he is actually Dr. Cross' husband- the developmental ped at NYpres)
Global Pediatrics, PC
1559 York Avenue(Off 83rd)
New York, New York 10028
Tel (212) 585-3329
Fax (212) 585-3717
Dr. AnnMarie Greco
215 E 95th St
New York, NY 10128
(212) 996-8000
Dr. Ramon Murphy or Daniel Cammerman at Uptown Pediatrics
96th & Park Avenue
212-427-0540
Dr. Jack Levine (also developmental specialist)
Kew Garden Hills Peds.
11-49 70th Rd Kew Garden Hills 11376
718-268-5282
Gary Edelstein
Manhattan Pediatrics
16 E 60th St Ste 410
New York, NY 10022
(212) 326-3351

RECOMMENDED SPECIALISTS:
AUDIOLOGIST
Anita Stein-Meyers
Center for Hearing and Communication
50 Broadway
6th Floor
New York, NY 10004
917-305-7700 (Phone)
917-305-7888 (Fax)
Astein@chchearing.org
CARDIOLOGIST
Dr. Salvatore Presti
25 Schermerhorn St.
Brooklyn, NY 11201
(718) 923-1123 and 110 East 59th Street
New York, NY 10022
(212) 838-9880
Dr. Shubhika Srivastava
Mt. Sinai
212.241.8662
PEDIATRIC HEART SURGEON
Dr. Nguyen
Cardiothoracic Surgery
Mt. Sinai
1190 Fifth Avenue
212.659.9472
DENTAL
Mark Hochberg
212-879-3956
Dental Clinic (many special needs patients)
LIJ/Cohen's Childrens Hospital
718-470-3110
ENDOCRINOLOGIST
Sharon Oberfield
212-305-6559
ENT
Dr. Ward of Dr. April
Oxford Building
428 East 72nd St Suite 100 btw York and 1st Ave
New York, NY 10021
Phone: 646-962-3017
Fax: (212) 746-8124

Jacqueline Jones
212-996-2995
Dr. Eli Grunstein
Morgan Stanley Children hospital and also at another office on the Eastside
212-305-8933
GI
Dr. Anil Kesavan
505 East 70th Street
Helmsley Tower, 3rd Floor
New York, NY 10021
Phone (646) 962-3869
Fax (646) 962-0246
Dr. Fredric Daum (Chief of Gastroenterology)
Gatroenterology Winthrop Peds.
120 Mineola Blvd. Mineola NY.
516-663-4600.
He is a potty training specialist for special needs kids. He holds a seminar for the parents and tells you what to expect then gives you one on one instructions and keeps in touch with you thru the entire process. It is a tough course he is no nonsense but knows what works. It is especially beneficial for kids who are with-holders of BM.
LACTATION CONSULTANT
Susan Burger
917-912-8066 sburgernutr@nyc.rr.com
NEUROPSYCH EVALS
Dr. David Salsberg - office at Ruske Institute (takes insurance) or through private practice PALS
OPTHAMOLOGIST
Dr. Richard Levy
1305 York Ave
New York, NY 10021
Phone: (646) 962-2020
Fax: (646) 962-0602
Mark Steele
40 West 72nd
212-981-9800
Dr Kodsi or anyone in that practice
LIJ
600 Northern Blvd. Great Neck NY
516-470-2020
The Eye Clinic for those whose insurance is not taken at Dr. Kodsi's office is in the same location, She works there as well. LIJ Vision Clinic 516-470-2030.

ORTHOPAEDICS
Dr. Shevaun Doyle
Hospital for Special Surgery
535 East 70th Street
New York, NY 10021
(646) 797-8816
John Blanco
Hospital for Special Surgery
535 E. 70th Street
New York, NY 10021
Tel: 646.797.8366
Fax: 646.797.8361
David Feldman
NYU Langone
67 IRVING PLACE, 8TH FLOOR
NEW YORK, NY 10003
212-533-5310
ORTHODICS
Lorelai Orthotics-Prosthetics
212-727-2011
PULMONOLOGIST / SLEEP STUDY
Dr. Carin Lamm
212-305-5122

DOWN SYNDROME MEDICAL CENTERS:
Child Development Center
Morristown Memorial Hospital
100 Madison Avenue
Morristown , NJ 07960
973-971-5227
The Judy Center For Down Syndrome
Hackensack University Medical Center
30 Prospect Ave.
Hackensack , NJ 07601
201-996-5839 http://www.thechildrenshospitalhumc.net/index.aspx?LOBID=1036
Schneider Children's Hospital
Developmental & Behavioral Pediatrics
1983 Marcus Avenue, Suite 130
Lake Success , NY 11042
516-802-6100
Down Syndrome Program
Robert Warner Rehabilitation Center
Women & Children's Hospital of Buffalo
219 Bryant Street
Buffalo , NY 14222
716-888-1300
Down Syndrome Center of Western Pennsylvania
Children's Hospital of Pittsburgh
3420 Fifth Avenue ,
Pittsburgh , PA 15213
412-692-7963
Trisomy 21 Program (long waiting list)
The Children's Hospital of Philadelphia
34 th Street and Civic Center Blvd
Philadelphia , PA 19104
267-426-5283 http://www.chop.edu/service/trisomy-21/home.html
Eastern PA Down Syndrome Center
P.O. Box 60
6900 Hamilton Blvd
Trexlertown , PA 18087
610-402-0184
(Pediatric and adult)

EVENTS/CONFERENCES/ WORKSHOPS
Attending various events is an opportunity to learn more as well as network with other families. Some of the events are very family friendly or will provide child care.
DSAF Yearly Conference at CW Post of Long Island University
Princeton University http://www.princeton.edu/~pda/Index2/Welcome.html
NDSS Monthly Webinars http://www.ndss.org/en/Affiliates/Monthly-Affiliate-News/
RCSN workshops http://www.resourcesnyc.org/
Buddy Walk in Central Park (Saturday in September) http://www.buddywalk.org/
World Down Syndrome Day, March 21 http://www.inclusive.org.br/?p=21921
Romp for Research http://www.rompforresearch.com/
YAI yearly conference: http://yai.org/resources/conferences/yai-conference/ (free if you get service coordination through YAI)
A Special Day for Special Kids (Long Island) http://www.specialdayforspecialkids.com/
FOR LATER DOWN THE ROAD
RCSN hold workshops and trainings for turning 3 and turning 5 transitions as well as all stages of life. http://www.resourcesnyc.org
Recommended Preschool age 3-5 programs


UCP
YAI Roosevelt/ Grammercy


Bank St
Central Park Early Learning Center
NYC Public School Info http://schools.nyc.gov/NR/rdonlyres/AFAF452E-E9BF-450F-814A-
FEABF4654882/0/KindergartenOrientationGuide2011.pdf http://schools.nyc.gov/NR/rdonlyres/0797E0DD-0BD0-4734-9D50-1F5453198287/0/Parent_Guide_English.pdf http://schools.nyc.gov/NR/rdonlyres/40AB0005-93E8-405F-897C-
A657A9CA372B/0/WelcometoKindergarten122711.pdf
Educational Advocacy
- Advocates for Children
- RCSN
Inclusion Research http://schools.nyc.gov/NR/rdonlyres/40AB0005-93E8-405F-897C-
A657A9CA372B/0/WelcometoKindergarten122711.pdf (pg 38,39) http://www.down-syndrome.org/information/education/overview/

Psychological Evaluations
The Board of Ed usually uses Woodcock Johnson or Stanford Binet. You can also get other evaluations done such as WISC or Differential Ability Scale (DAS) through an independent evaluator
- The Dean-Hope Center for Educational and Psychological Services (CEPS) has been helping individuals, couples and families for more than 50 years, with everything from learning disabilities assessment and child play therapy. Services are provided by advanced graduate students, supervised by TC faculty. Services and assessments are reasonably priced and are determined by self/ family income after the initial consultation.
To apply, call: (212) 678-3262, or visit: www.tc.edu/ceps.
- The Psychological Testing Service at the NewYork-Presbyterian Phyllis and David Komansky Center for
Children’s Healthy provides psychological and neuropsychological evaluations of children and adolescents, both privately and through the Payne Whitney Child and Adolescent Outpatient Department. Additional services include consultations with parents and appropriate referrals. To schedule an appointment, please contact Gail Ross, PhD, Associate Professor of Psychology in Pediatrics and Psychiatry, at (212) 746-5717. http://nyp.org/komansky/patient_care/medical_services/psychology/index.html
- AHRC http://www.ahrcnyc.org/
- Dr. David Salsberg office at Ruske Institute (takes insurance) or through private practice Pediatric
Assessment, Learning & Support (PALS) http://rusk.med.nyu.edu/pediatric-outpatient-psychology-service