Patient Resources for the Down Syndrome Program
Resources for Expectant Parents
- Understanding a Down Syndrome Diagnosis
A booklet of information for expectant couples who have received a prenatal diagnosis of Down syndrome and have not yet made a pregnancy decision. - Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome
A booklet of information for expectant couples who are preparing for the birth of their baby with Down syndrome. - Your Loved One is Having a Baby with Down Syndrome
A booklet for expectant parents to give to family, friends, and co-workers, explaining Down syndrome. - MDSC’s First Call Program
A volunteer, state-wide group of trained parent mentors available 24/7 to listen, share, answer questions, and provide valuable information.
Resources for Families Coping with a Miscarriage or a Loss
- Coping with Loss: Down Syndrome
A book that offers support to families who have experienced a miscarriage or lost a baby or child with Down syndrome
Resources for New Parents
- Breastfeeding Your Baby With Down Syndrome | View PDF
- Informação útil sobre a lactação materna e os bebês com síndrome de Down | PDF
- Información útil sobre la lactancia materna y su bebé con síndrome de Down | PDF
- Helpful Resources for Your Baby with Down Syndrome
A list of resources from the MGHfC Down Syndrome Program about Down syndrome, breastfeeding support and Early Intervention. - Welcoming a Newborn with Down Syndrome: A New Parent’s Guide to the First Month
A book offering support and accurate, reliable information on everything parents need to know for that first month. - MDSC’s First Call Program
A volunteer, state-wide group of trained parent mentors available 24/7 to listen, share, answer questions, and provide valuable information
Disability Organizations
Local Organizations
- Massachusetts Down Syndrome Congress (MDSC)
- Massachusetts Department of Developmental Services (DDS)
National Organizations
- The Arc
- Best Buddies
- Down Syndrome Affiliates in Action
- Global Down Syndrome Foundation
- LuMind IDSC Down Syndrome Foundation
- National Down Syndrome Congress (NDSC)
- National Down Syndrome Society (NDSS)
- Special Olympics
Types of Down Syndrome
- Mosaic Down Syndrome | View PDF
- Translocation Down Syndrome | View PDF
- Trisomy 21 Down Syndrome | View PDF
Directions to Your Appointment
Sleep and Apnea
- Breathing Mask, How to Wear with Success | View PDF
- Obstructive Sleep Apnea | View PDF
- My Face Mask: A Coloring Book of Adventures (PDF)
- Sleep Studies for Children and Teens (PDF)
- Sleep Studies for Adults (PDF)
- Obstructive Sleep Apnea in Children with Down Syndrome | View PDF
- Preparing for Your Child's Sleep Study | View PDF
- Treatments for Obstructive Sleep Apnea | View PDF
Other Medical Information
- Abnormal Blood Tests | View PDF
- Atlanto-Axial Instability (AAI): What You Need to Know | View PDF
- ADHD in Individuals with Down Syndrome (video)
- Behaviors of Children with Down Syndrome | View PDF
- Birth Control: Choosing One That Works for You | View PDF
- Blood Tests in Children with Down Syndrome | View PDF
- COVID-19 and Down Syndrome: What You Need to Know
- Dentist Visit: How to Prepare | View PDF
- Dry and Sensitive Skin Care Tips | View PDF
- Flu: Flu Vaccine Information for People with Down Syndrome | View PDF
- Gout: What You Need to Know | View PDF
- Guardianship Checklists and Guide (PDF)
- Hearing Loss | View PDF
- Hematologic and Oncologic Conditions in Down Syndrome: For PCPs | View PDF
- Español: Afecciones Hematológicas y Oncológicas en Personas con Síndrome de Down: Descripción General Para El Proveedor De Atención Primaria | PDF
- Infantile Spasms | View PDF
- Leukemia and Down Syndrome: What You Need to Know | View PDF
- Moyamoya Syndrome: What You Need to Know | PDF
- Physical Activity: Moving More: The Importance of Physical Activity | PDF
- Regression and Down Syndrome | View PDF
- RSV: How Palivizumab Can Prevent RSV in Babies with Down Syndrome | View PDF
- Vaccines to Consider for People with Down Syndrome | View PDF
Family Resources
- Grief: How to Help When Your Loved One Is Grieving | View PDF
- New Parents: Helpful Resources for Your Baby with Down Syndrome | PDF
Imaging
- MRI: What to Expect | View PDF
- عربى ما الذي يمكننا توقعه من مخطط حركة الأمعاء الخاصة (MRI)بالطفل (الأشعة بالرنين المغناطيسي | PDF
- Español: Obtención De Imágenes Por Resonancia Magnética (MRI) | PDF
- Kreyòl Ayisyen: Imajri a Rezonans Mayetik (MRI) | PDF
- Português: Imagem de Ressonância Magnética (IRM) | PDF
- Sedation/General Anesthesia: What to Expect | View PDF
- تعليمات ما بعد المسكن أو التخديرعربى | PDF
- Español: Sedación/Anestesia General (GA) | PDF
- Kreyòl Ayisyen: Sedatif Anestezi - Jeneral (GA) | PDF
- Português: Sedação Por Anestesia Geral (AG) | PDF
- Sedation/General Anesthesia: Home Care Instructions | View PDF
- تعليمات ما بعد المسكن أو التخديرعربى | PDF
- Español: Instrucciones Para Después De La Sedación O Anestesia | PDF
- Kreyòl Ayisyen: Enstriksyon Pou Suiv Apre Yon Sedatif Oswa Apre Yon Anestezi | PDF
- Português: Instruções Após Sedação Ou Anestesia | PDF
- Video Swallow Study: What to Expect | View PDF
Celiac Disease
Constipation
- Medications to Ease Constipation | View PDF
- Understanding Constipation in Children with Down Syndrome | View PDF
Nutrition and Feeding Resources
Contact a Specialist
Infant
- Breastfeeding Your Baby With Down Syndrome | View PDF
- Informação útil sobre a lactação materna e os bebês com síndrome de Down | PDF
- Información útil sobre la lactancia materna y su bebé con síndrome de Down | PDF
- Breast Milk or Formula, Tips to Offer | View PDF
Toddler
General Nutrition
- Iron Deficiency: Tips to Treat Iron Deficiency with Diet | View PDF
- Iron Deficiency Anemia: What You Need to Know | View PDF
- Español: Información para comprender la anemia por deficiencia de hierro en personas con síndrome de Down | PDF
- Lactose-Free v. Dairy-Free How to Tell the Difference | PDF
- Living a Healthier Lifestyle (PDF)
- Nutrient Density | View PDF
- Eating Fiber to Ease Constipation | View PDF
- Eating Fiber to Ease Constipation on a Gluten-Free Diet | View PDF
- Vitamin C: Tips to Get More Vitamin C from Food
Texture Progression
- Purees, Starting | View PDF
- Purees Food Chart | View PDF
- Thick Purees, Starting | View PDF
- Thick Purees Food Chart | View PDF
- Soft Solids, Starting | View PDF
- Soft Solids Food Chart | View PDF
- Solids That Are Harder to Chew, Starting | View PDF
Life Skills Handouts
- Asking Someone I Trust for Help (PDF)
- Bathing and Showering by Myself (PDF)
- Brushing Teeth (for Families) | View PDF
- Calling 911 (PDF)
- Doctor's Visit: How to Prepare | View PDF
- Getting Dressed By Myself (PDF)
- Health Insurance: What You Need to Know | View PDF
- Healthy Lifestyle: How to Live a Healthy Lifestyle (PDF)
- Household Chores (PDF)
- Laundry: I Can Do Laundry on My Own! (PDF)
- Personal Information: How to Share | View PDF
- Physical Activity: Learning How to Wear My Physical Activity Belt (PDF)
- Practice Sheet: Learning My Personal Information (PDF)
- Prescription Medications: What You Need to Know | View PDF
- Public Restroom, Using a (PDF)
- Public Transportation, Using on My Own (PDF)
- Safety Around Strangers (PDF)
- Sleep: Creating a Bedtime Routine (PDF)
- Swallowing a Pill By Myself (PDF)
- Talking to the Doctor (PDF)