I'm so glad you made it here! This is a great time to have a healthy, happy baby with T21. Your baby's future has never looked better (and is looking better every day). I would love to tell you that you can find a physician who will know exactly what to do to best care for your baby. Unfortunately, that is not the case. Although your physician may not yet know the best way to treat many aspects of your baby's development, which I understand is a scary thought, rest assured that I will share with you what is working for my son, Jett. And I will help you get in touch with experienced moms, clue you in to great resources and keep you abreast of the most recent research and brainstorming about Down syndrome. You are not alone. You have all the resources you need to be a successful parent. You will be empowered to give your baby the best possible future with the best possible treatment. Your baby's future is in good hands -- yours!
I know it takes a while to come to terms with your emotions. It's okay to cry, to be angry, to blame yourself and others. Please
accept all of these feelings as a normal, healthy reaction to
disturbing news. This is an uncertain time for you, full of the unknown.
Allow yourself to grieve and vent and ride out the emotional roller
coaster. Talk to friends and family (but keep in mind they
understandably have the old stereotype in their mind). Write in a
journal. You don't have to share it, you
don't have to read it ever again. In fact, you can even rip out the
pages and throw them away. But, do acknowledge your feelings and express
them so that you can move forward.
It's natural to feel overwhelmed....
There's a lot of information here. You can't learn
all of this in one day (or month or year...)! I'm hoping to save
parents the time and anguish of sorting through all the information
that's out there on T21. I want to allow you to spend quality time
enjoying and nurturing your child rather than spending the time that I
already have going through piles of research. I am open minded and
update blog posts according to my latest findings, but I do have
specific beliefs about what works best and what doesn't and I only
share what I either endorse or am still open to and researching. Feel
free to share your experiences, questions and solutions you may have
privately (click my profile for my email address) or as a comment for
all to see.
You have some time!
Please do not feel that you have to give your sweet little one with
his/her delicate tummy lots of vitamins and supplements right away! My
Jett couldn't tolerate anything other than breast milk for the first
four months and he's turning out very well. Some babies can take a
vitamin from day one and some babies can't tolerate anything until 6
months old. All is not lost! It's most important that you attend to
his/her basic baby needs (see Feeding & Early Care) plus extra
stimulation (see Early Therapy). Your love and attention is what he
needs most during these precious first years!
Keep up-to-date by subscribing in a reader to this blog or sign up to get each new post automatically sent to you by entering your email address in the "Follow by Email" box on the right of your screen. I'd love to know that you are actively reading by adding yourself as a "follower." It's a small way to let me know you are listening! You can friend me on Facebook as well.
Keep up-to-date by subscribing in a reader to this blog or sign up to get each new post automatically sent to you by entering your email address in the "Follow by Email" box on the right of your screen. I'd love to know that you are actively reading by adding yourself as a "follower." It's a small way to let me know you are listening! You can friend me on Facebook as well.
Also read New? Start Here to learn more about my philosophy and for updates on Jett's wonderful progress.
Where to Start
- Find A Quality Physician
- Gett Organized with a Medical Notebook
- Check out this list of the Best Resources for Guidance on Down Syndrome
- Which Lab Tests to Request, What they Mean and How to Get a Good Blood Draw
- Create a toxic free environment to give your baby the best possible start.
- Learn about and find an QRI Cold Laser specialist, the sooner, the better. (Better yet, get your own laser so you don't have to travel and continuously pay a specialist.) Helps with gross/fine motor, cognition, sleep, potty training, social skills, etc.
- Learn about and Find a Neurodevelopmental therapist for an overall plan.
- Learn about and find an ABM therapist for extra gross motor support.
Breastfeeding Mom's Nutritional Support
Feeding & Early Care
Moms,
caring for your sweet one will be your number one priority. These
posts will help address some common questions and concerns.
Healthy Alternative to Conventional Infant Formula
From the Einstein-syndrome website: Feeding an Infant with Trisomy 21
From the Einstein-syndrome website: Feeding an Infant with Trisomy 21
Why a Sippy Cup isn't recommended a blog post from speech learning pathologist, Sara Rosenfeld Johnson
Keeping Nasal Passages Clear & Mouths Closed
Keeping Nasal Passages Clear & Mouths Closed
This
is an important issue for our babies with DS. You need to be aware of
how immunizations can directly and permanently effect your baby.
Please take the time to see this easy to understand video on Vaccines and Down Syndrome.
Please take the time to see this easy to understand video on Vaccines and Down Syndrome.
Achieving Iron Balance with Diet
Whole Grains Reduce Mineral Absorption
Foods that Fight Alzheimer's Disease
Whole Grains Reduce Mineral Absorption
Foods that Fight Alzheimer's Disease
Nutritional Supplementation (Targeted Nutritional Intervention)
Early Therapy
You want to start at-home therapy as soon as possible instead of/in addition to outside therapy. It's an easy fun way to bond with your baby while
providing much needed stimulation. The work you do now will prevent many
problems from ever arising in the future.
Learn about and find an MNRI therapist, the sooner, the better.
Learn about and Find a Neurodevelopmental therapist for an overall plan.
Learn about and find an MNRI therapist, the sooner, the better.
Learn about and Find a Neurodevelopmental therapist for an overall plan.
Oral Motor Therapy from the Bits of Real Life Blog
Early Educational Support
The more you do now, that more time your baby has to learn and develop his mind.
Learn about and Find a Neurodevelopmental therapist for an overall plan, including early educational ideas.
Treatment for Brain Health
We
all want a cure for DS. These posts explain the latest treatment
plans/biomedical intervention (usually don't start directly in the child until 3-6 months of
age depending on your baby's digestion). I have many posts exploring
brain support, but as a new parent, it's best to stick with researching
proven treatments that offer a lot of guidance. Our children may all
share an extra chromosome, but since every child is different; it's
important to follow your child's cues & clues.
Overview
Details
This post will lead you to a whole mind set in caring for your child.
Success Stories
Wondering how well treated kids are doing? Take a look for yourself.
- 20 year old Nathan Purdy Speaking He's been supplemented for many years and his awesome mom worked extensively with him. A delightful young man!
- Emmanuel Bishop playing the Bach Minuet on violin at age 14. I know he's on a multivitamin, not sure what else, but his Dad is an advocate and avid researcher. Emmanuel is also a great swimmer, golfer, is bilingual and does speaking engagements.
- Meet 10 year old Lydia Supplemented and was on neurodevelopment program, both at early ages.
- Gryffin & Lucas
- Lucas and his inventors
- Lucas en espanol Speaking Spanish at 4 years old. Supplemented and on neurodevelopment program with mom as OT.
- Teyjas, 4 years old, recites the alphabet backwards. He was only taught it forwards.
- 4-year-old Jett speed reading. "An Alphabet of Dinosaurs". Started neurodevelopmental therapy since around birth and TNI at 3.5 months old.
- Laura's "K" Reading Ages 2-4 She's been on a neurodevelopment program early with a healthy, organic diet and started TNI at age 3.
- Six year old Mac reading
- Jett at 19 months reading 9 words in 1 minute 40 seconds.
- Video of Jett sight reading at 18 months old.
- Jett Pretending to Read at 16 Months Started neurodevelopmental therapy since around birth and TNI at 3.5 months old.
- Sleep Study: The Results
- 11 year old Lydia speaking on what it's like to be a preteen.
- Biomedical intervention in adults
Forum
Here's a forum for babies with DS whose parents believe in their Unlimited Potential. I'm there a lot.
Spiritual Guidance
From the Christian perspective, The Purpose Driven Life by Rick Warren has a chapter called, "You are Not a Mistake" that is available for free.
Here is a list of interesting articles and inspirational essays and poems compiled by Ria and Bill on their blog:
Creed for Babies with Down Syndrome by Anonymous
Friendly Observations for People with Down Syndrome by Karen Gaffney
The Impact of Childhood Disability: The Parent's Struggle by Ken Moses, PhD
The Special Mother by Erma Bombeck
Thoughts of a Mom by Maureen K. Higgins
Welcome To Holland by Emily Perl Kingsley
Welcome to the Magic Kingdom by Jill Kocian of Rivers of Joy
What Parents Wish They'd Known - Reflections on Parenting a Child with Down Syndrome (downloadable pdf file)
Buying Guides
Handwriting ResourcesNon-toxic Diapering Supplies
Review of BrillKids Little Reader
BrillKids discounts for Special Needs Families
All Posts Regarding Infants & Babies
Getting Organized: A Medical Notebook
Lab Tests: Which to Request, What they Mean and How to Get a Good Blood Draw
Lab Tests: Which to Request, What they Mean and How to Get a Good Blood Draw
Sharing Inspiration to Support the Yamini Foundation
Handwriting Resources
Alphabet Tactile Quilt
Glutathione
Glyconutrients
Piracetam
Link Between Sleep Deprivation & Alzheimer's Risk
Achieving Iron Balance with Diet
Why supplement and monitor zinc?
Neurofeedback
Lydia Does Math
The First 2,000 Days are Critical
Constipation: Causes and Cures
Financial Asssistance Beyond Insurance & Medicaid
Hyperbaric Oxygen Therapy
Methylation Pathways
Whole Grains Reduce Mineral Absorption
Feed Memory by Kan Herbs
Lydia's Success Story
Meet Lydia
Foods that Fight Alzheimer's Disease
The Importance of MagnesiumHandwriting Resources
Alphabet Tactile Quilt
Glutathione
Glyconutrients
Piracetam
Link Between Sleep Deprivation & Alzheimer's Risk
Achieving Iron Balance with Diet
Why supplement and monitor zinc?
Neurofeedback
Lydia Does Math
The First 2,000 Days are Critical
Constipation: Causes and Cures
Financial Asssistance Beyond Insurance & Medicaid
Hyperbaric Oxygen Therapy
Methylation Pathways
Whole Grains Reduce Mineral Absorption
Feed Memory by Kan Herbs
Lydia's Success Story
Meet Lydia
Foods that Fight Alzheimer's Disease
Teaching the Alphabet
Gift Ideas for Babies & Toddlers
Little Reader Chinese Review
DS Track at AutismOne Conference in 2012
Hyperbaric Oxygen Therapy
Teaching the Alphabet
How to Find A Quality Physician
Sharing Inspiration
Handwriting Resources
Alphabet Tactile Quilt
The Importance of Magnesium
Glutathione
Glyconutrients
Piracetam
Link Between Sleep Deprivation & Alzheimer's Risk
Achieving Iron Balance with Diet
Why supplement and monitor zinc?
Neurofeedback
Lydia Does Math
The First 2,000 Days are Critical
Constipation: Causes and Cures
Methylation Pathways
Whole Grains Reduce Mineral Absorption
Feed Memory by Kan Herbs
Lydia's Success Story
Meet Lydia
Foods that Fight Alzheimer's Disease
Review of BrillKids Little Reader
Why B12 & Folinic Acid for Down syndrome?
Reflux in Down syndrome
Reflux: Treating the Problem Not the Symptoms
Signs of Nutritional Deficiency
Survey Results: Are Unvaccinated Children Healthier
Probiotic/Yogurt Strains: Benefits and Uses
First Shoes: What's Best?
Vitamin C Plays Important Role in Brain Function
Keeping Nasal Passages Clear & Mouths Closed
My TV/Video Strategy
Cinnamon can prevent and cure Alzheimer's
Jett "Reading" at 16 Months
Prozac & Vision Problems in DS
Cure Tooth Decay & Gum Disease Naturally
Pulmonary Hypertension: Causes, Symptoms, Diagnosis
Hashimoto's Encephalopathy Mimics Alzheimer's Disease
Get Your Own Neurodevelopmentalist
Readeez Sale!
Noggin and BDNF Promotes Neurogenesis
Natural Ways to Help with ADD & Hyperactivity
Vaccine Information Coalition
Parent's Resources for Guidance on Down Syndrome
Six Foods that are Surprisingly High in Toxins
Cerebral folate deficiency in Down syndrome
Little Reader Chinese Review
DS Track at AutismOne Conference in 2012
Hyperbaric Oxygen Therapy
Teaching the Alphabet
How to Find A Quality Physician
Sharing Inspiration
Handwriting Resources
Alphabet Tactile Quilt
The Importance of Magnesium
Glutathione
Glyconutrients
Piracetam
Link Between Sleep Deprivation & Alzheimer's Risk
Achieving Iron Balance with Diet
Why supplement and monitor zinc?
Neurofeedback
Lydia Does Math
The First 2,000 Days are Critical
Constipation: Causes and Cures
Methylation Pathways
Whole Grains Reduce Mineral Absorption
Feed Memory by Kan Herbs
Lydia's Success Story
Meet Lydia
Foods that Fight Alzheimer's Disease
Review of BrillKids Little Reader
Why B12 & Folinic Acid for Down syndrome?
Reflux in Down syndrome
Reflux: Treating the Problem Not the Symptoms
Signs of Nutritional Deficiency
Survey Results: Are Unvaccinated Children Healthier
Probiotic/Yogurt Strains: Benefits and Uses
First Shoes: What's Best?
Vitamin C Plays Important Role in Brain Function
Keeping Nasal Passages Clear & Mouths Closed
My TV/Video Strategy
Cinnamon can prevent and cure Alzheimer's
Jett "Reading" at 16 Months
Prozac & Vision Problems in DS
Cure Tooth Decay & Gum Disease Naturally
Pulmonary Hypertension: Causes, Symptoms, Diagnosis
Hashimoto's Encephalopathy Mimics Alzheimer's Disease
Get Your Own Neurodevelopmentalist
Readeez Sale!
Noggin and BDNF Promotes Neurogenesis
Natural Ways to Help with ADD & Hyperactivity
Vaccine Information Coalition
Parent's Resources for Guidance on Down Syndrome
Six Foods that are Surprisingly High in Toxins
Cerebral folate deficiency in Down syndrome