Wednesday, June 8, 2011

Parent's Resources for Guidance on Down Syndrome

When Jett was first diagnosed with T21, my family and I were drowning in a sea of information. I did not like a lot of what I was reading. Much of it was depressing and negative with a focus on accepting the fate of your child with DS instead of assisting in finding answers, treatment and solutions. Please benefit from our experience and enjoy this extensive list of resources that you will find positive, helpful, proactive and full of solutions!

Great Books

If your public library doesn't have these books, certainly request it for yourself and so that others can find the books after you. Usually libraries can borrow books locally and even from libraries across the country. Also check your local DS organization, often they have lending libraries as well. Be sure to share this list with them in case they are missing some crucial books. Please don't let lack of money shouldn't stand in your way of getting this valuable support. 

Check out the DS Day to Day amazon store for these books.

Brighton Baby A Revolutionary Organic Approach to Having an Extraordinary Child by Roy Dittmann OMD MH
A superb guide to healthy living. A must-read if you'd like to have another child!

Dr. Oz's You: Having A Baby. This excellent book is not about DS, but it explains everything you need to know to have a healthy pregnancy and baby. It also is a great introduction to epigenetics, which you will need to understand. I don't recommend this book lightly, I believe I've read at least 20 prenatal books and this is the one I recommend.

Down Syndrome: What You CAN Do by Kim & Qadoshyah Fish
With almost 600 pages, you will find answers to many of your daily questions in an easy to understand style. Chapters include inspirational stories and tips about, breastfeeding, nutrition, intervention, speech, neurodevelopment, heart, thyroid, digestion, health care guidelines, and adoption -- all focused on DS.
The downloadable version is only $5 and you can get it instantly!

Children of Dreams, Children of Hope by Raymundo Veras
This book is great for inspiration.

How to Teach Your Baby to Be Physically Superb : Birth to Age Six
A plan of action to start treating your baby right away. (You'll see from the comment that How Smart is Your Baby? also by the Domans, is recommended as well. My library didn't have that one so you'll have to see for yourself.)

Vitamin Therapy and Down Syndrome; Unlocking the secrets to improved health, intelligence and behavior
by Kent McLeod FREE download!! Do it, now!

Medical Treatment of Down Syndrome and Genetic Diseases by M.A., M.D. Henry Turkel and M.A. Ilse Nusbaum (1985)

Nourishing Traditions: The Cookbook that Challenges Politically Correct Nutrition and the Diet Dictocrats by Sally Fallon and Mary Enig (Oct 1, 1999) A practical, entertaining guide to a can-do diet that is both nutritious and delicious. If I had to pick a diet that I believe is best for families of loved ones with DS, this would be the diet. If "stomach issues" are present, I'd look to Dr. Campbell-McBride's book.

Gut & Psychology Syndrome by Dr. Campbell-McBride 
Learn from a neurologist and practicing nutritionist about the true connection between nutrition and brain function. Excellent information on feeding babies and children, failure to thrive and so much more! This book is definitely one to read and keep for reference. 

Successful Parenting of Children with Down Syndrome by John Unruh. Kay Ness, Jett's neurodevelopmentalist recommended this book. I haven't read it yet, but will do so soon.
How to Multiply Your Baby's Intelligence by Glenn Doman and Janet Doman
Has some of the same information as How to Teach Your Baby to Be Physically Superb, but is different. You may want to look through them both and decide whether or not to get them both. My local library had both and I read them together, so I can't remember off hand the differences.

Play To Talk: A Practical Guide to Help Your Late-Talking Child Join the Conversation by James MacDonald Ph.D. and Pam Stoika Ph.D. A guide for children of all ages. Teaches you how to communicate with your child and get him to communicate with you.

Early Communication Skills for Children with Down syndrome by Libby Kumin. I have not read this book; I'm going by recommendations from others.
What To Do About Your Brain-Injured Child by Glenn Doman
If you are action-oriented, you can read this one later. But if you want to better understand the theory behind the Doman methods in order to get motivated, read it sooner. Would be a good companion to read while you work with How to Teach Your Baby to Be Physically Superb. Okay to get from the library rather than purchase.

Naturally Better Kids by Kristin Morrison
A great book that shares Kristin's journey as she struggles with her son, Griffin's diagnosis and finds answers to treat him. She has great ideas here, but it can be overwhelming at times since it's written in journal style instead of as a step-by-step how-to book. Be ready to cry and rejoice with her! She also has an immediately downloadable version.

How to Teach Your Baby to Read by Glenn Doman, Janet Doman
This is a super great book. You don't need to start this until your baby can identify pictures, but you need time to read it and to make or purchase the flash cards. If you are making them yourself, you need a couple of months to do it so you won't be overwhelmed.

 How to Teach Your Baby to Swim 
You can start this right away, if desired. If you believe you may encounter asphyxiation problems, you may want to leave this to a professional.

How to Teach Your Baby Math 
You don't need to start this until you've started teaching him to read, but before two years old is best (although with DS, your window of opportunity may be longer). Again, you need time to read this book and to make or purchase the flash cards. After you've read How to Teach Your Baby to Read, you would only need to get this book from the library since it follows many of the same principles.

Einstein Never Used Flashcards: Or How Our Children Really Learn
This is NOT a DS-specific book. (In fact, one of its purposes is to let typical parents off the hook when it comes to Doman-like exercises.) It explains how & when typical children learn without early intervention. It's been helpful to me because, first, when I see how advanced Jett is because of the early intervention, it's encouraging. And second, it gives me specific learning-based milestones to make sure Jett is meeting them on time or early. It also has helpful exercises to do with your child at various ages (much later than with babies). As parents with compromised children, we have to be much more proactive and provide much more stimulation than parents with typical children. Please keep that in mind as you read the book. Not a must-read, but interesting.

Gross Motor Skills in Children with Down syndrome: A Guide for Parents and Professionals by Patricia C. Winders
Has very helpful exercises in it to give our kids opportunities for physical development. I don't agree with everything in this book, so as you go through the exercises, KEEP IN MIND: our children should not be put into positions that their bodies (bones, muscles) may not be ready to support. Encouraging movement and giving them opportunities to put themselves into positions is great. If you are mindful of this idea, it's a safe book to follow.

Fine Motor Skills for Children with Down syndrome: A Guide for Parents and Professionals by Maryanne Bruni
Has activities to encourage fine motor skills from birth to early

The Baby Book: Everything You Need to Know About Your Baby from Birth to Age Two (Revised and Updated Edition) by William Sears, Martha Sears, Robert Sears and James Sears (Mar 2003)
It's all about how to care for a (typical) baby. It shows you all the milestones and answers a million questions about what is normal or not. I reference it all the time. But, I'd ignore the entire section about DS. It's all about untreated babies and is outdated. It's over 750 pages. I recommend the entire Dr. Sears series since it supports attachment parenting.

The Attachment Parenting Book : A Commonsense Guide to Understanding and Nurturing Your Baby by William Sears and Martha Sears (Aug 7, 2001) I know I already recommended the entire Dr. Sears' collection, but I needed to mention this one separately as well!
The Attachment Connection: Parenting a Secure and Confident Child Using the Science of Attachment Theory by Ruth Newton Ph.D. and Allan Schore Ph.D. Get from the library. It explains the science and research behind why attachment parenting produces the happiest, healthiest and smartest children.
How to Give Your Baby Encyclopedic Knowledge
Great, but not as important as other skills. I haven't read this through yet, but I will when I have his other issues taken care of. (LOL!)

Also check out Bill and Ria's blog post Down Syndrome Book Review List for their opinions on books about DS.

Great Videos

Here are great informational videos on Down syndrome: 

Here are some free online videos of  Doctors' Presentations on Biomedical Issues in Down Syndrome. 

Great DVDs

Parent Kit: Using Oral Placement Therapy With Your Child - TalkTools®  This is a great DVD for parents to learn quality, at-home speech therapy. You can purchase the entire parent kit which includes all the tools necessary including a 3-hour DVD where Sara R. J. demonstrates how to use each of the tools at home. This is a link to just the dvd . Talk tools works on building oral motor skills (muscles in the mouth) to build a foundation for speech production. A must-buy!

Communicating Partners DVDs: ECO I and ECO II and Shortcuts are great companions to or replacement for the Play To Talk books because they show you exactly what to do and how to do it. I'm a big fan of James D. MacDonald's techniques.

Great websites

Down Syndrome OPTIONs  
A new and growing resource for positive information about options for those with T21. Be sure to "Join the Community." You'll find lots of articles about diet and nutrition written by parents of children with T21. Coming soon: Alternative Therapies, Supplement Facts, Thyroid Info and more. The community is invited to share their stories on what has worked for them.
Shares a positive approach to dealing with T21 issues. The 15 Things Every Parent Should Know... is a must read! The forum features very experienced parents who are proactive and share a lot of research and tips.

River Bends
A great resource for information about medical aspects, inclusion, therapies, early intervention, home schooling and much more regarding T21.

Super Down Syndrome

Chiropractor, Yoga teacher and Dad to Xervier, with T21, Paul Doney shares his collection of research about Down syndrome.


A wonderful idea! You fill out a profile on your loved one (doesn't have to have Autism) including strengths and symptoms. Then you share what has and hasn't worked (medicine, surgeries, therapies, supplements). Then you can compare and contrast your choice of treatment with others who have similar strengths and symptoms as your child. Ingenious! All the information is private and protected. Plus, you can ask Dr. Baker questions--and get answers!

Great Blogs

Got Down Syndrome
Qadoshyah Fish, sister to brother, "O", with T21, has a wealth of information and personal stories to share. She and her mother wrote and edited an impressive collection of articles that make up the book, Down Syndrome: What You CAN Do.

Down Syndrome: A Day to Day Guide
In my blog, you'll find an organized place for the information you need to care for and treat your loved one with T21 plus lots of updates on my sweet Jett!

The Down Syndrome Action Plan

Geralyn Spiesz shares her success with her son, Lucas, who is doing very well.

Great Forums

Einstein Syndrome's Email Listserv 
A bunch of super researching family members from around the world. (You'll find me here.) Really the best place for up to date info by forward-thinking, proactive families. Each post is sent in an email.

Baby Center's Unlimited Potential Forum 

A group of parents of young children w/DS who believe in their child's unlimited potential focusing on Neurodevelopment Therapy and biomedical intervention. (I check in here often.) You visit the website to read the past posts and then post as needed. Is visible to anyone. Not a private group.

Yahoo's DSTNI (Down Syndrome Targeted Nutrition Intervention) 
This is Dr. Leichtman's group. He is a pediatrician, geneticist and nutritionist. He specializes in children with DS and has seen thousands and thousands of our kids. I do think he undertreats the thyroid issues in our child, however, he is a great source of information.

Yahoo's Down Syndrome Information Exchange 

A good list for current news and research and activism. (Not sure how much they support "treating" our kids.)

Yahoo's Communication Support Group 

Learn how to slow down and playfully interact with the goal of speech, with emphasis on teaching preverbal and communication skills.

Yahoo's Down Syndrome & Autism Dual Diagnosis Group 
Started by a biomed mom of a young child w/DS and ASD to give us a place to discuss the best course of action.

For the Yahoo groups, you can just subscribe to the Daily Digest to get just one email with all the day's posts. Just start reading and learning.

Great Face Book Pages

DS Day Today's Community Page
My community page. You can see our Family Album and find out the latest goings on and musings. Just "like" to receive updates.

The Kay Ness Group
This is Jett's neurodevelopmentalist's group. She posts tons every day on topics not always specific to T21, but ones that support a healthy lifestyle, proactive ideas and the latest research. If you don't have time to explore the internet yourself, let Kay do it for you.

For parents with a prenatal diagnosis or a baby under a year old, you can join the Facebook group called Down Syndrome Baby Steps for support through the first year.

For parents/caregivers for individuals with Down syndrome, join the Facebook group Unlimited Potential, which focuses on neurodevelopmental therapy and the Trisomy 21 Nutrition and Supplementation GroupPlease let us know if you want to join so we can add you.
For parents with babies and young children with Down syndrome, join the online group Unlimited Potential Parent Group.

Enjoy a vast amount of information sharing for parents of individuals with DS at the Einstein Syndrome Forum.
For parents with family members with the dual diagnosis of Down syndrome and autism spectrum disorder, join the DSA of Louisville to learn about IEPs, etc. For putting together a plan of action including biomedical intervention, join the yahoo group called DS-Aut Recovery.
For Australian families with a child with Down syndrome, there's a Facebook group that's just for you! If you want to join, contact them at their page.
For UK families with a child with Down's syndrome, there's a Facebook group called Down's Syndrome Proactive Parents UK. Please let us know if you want to join so we can add you.
Para las familias que hablan español, hay un grupo de FB llamado Padres proactivos párrafo Síndrome de Down.
Para as famílias que falam português, há um grupo chamado FB 21 A Trissomia do Amor. Este grupo discute uma ampla gama de tópicos, incluindo supplemenation para indivíduos com síndrome de Down. Para perguntas específicas sobre tais terapias alternativas, você pode marcar "DS Daytoday".
Colorado Families, there's a proactive Facebook group just for you to share local resources.

1 comment:

Kelley said...

But you're missing how Smart Is Your Baby which is THE guide for the first year. It covers physically superb, how to teach to read, how to multiply intelligence and what to do about your brain injured child for the first 12-18 mo and it is much more easily readable than the How to Teach.. books are, with tons of pictures and graphics and better editing.

I was SO disappointed I'd gotten the other books and didn't know about How Smart is Your Baby until it was almost too late to matter.