Trisomy 21 ~ Down Syndrome

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*I update this list occasionally as my daughter grows, gets older and we learn more things.  As of today, she has just turned 4 years old.  She walks (I should correct myself, RUNS), talks (with limited vocabulary and clarity), and is just beginning potty training.
Updated April 14, 2016
In April 2012 my little girl was born.  She was not at all who I was expecting.  First, I was in doubt that I was having a girl even after three sonograms.  Second, she was quickly diagnosed with a undetected heart defect, a complete AVSD.  When she was handed to me, for just a brief moment to say hello, I could tell that she was 'different'.  I could see distinguishing features of Trisomy 21, more commonly called Down syndrome.

Even though none of these were expected, I wouldn't change her.  Don't confuse that with I don't want to help her.  As with any of my children, I want to help them do the best they can with who they are.  She's no exception to that.  I still want to help her reach her highest potential.  She does have some more distinguishing characteristics that make her who she is.

On to the purpose of this page, things that I have found extremely helpful and often essential for Dianna's health and development. I've broken them up into areas I make goals for her in.  Many items overlap such as Baby Signing Time; in this case, I put in parentheses the benefits I've noticed.

Health~ Physical and Mental {Including Brain Development}

First, I would highly recommend that you have at least one doctor your child sees that has treated children who have Down syndrome.  We don't, and we've been fine.  BUT, one of the doctors Dianna saw after an episode that landed her in the hospital for a 24 hour observation (choking, aspirating), was so helpful to me.  Unfortunately she wasn't a pediatrician with her own office, but worked on the hospital floor only.  We learned quite a few things about muscle tone and how it impacts all of the body, including the esophagus.  Just want to point that out.

Multivitamins {Nutrivene D Powder}~ A multivitamin in powder form that is specifically compounded for children with Down syndrome.  It has extra zinc to support a strong immune system.  There is extensive information about the ingredients and purpose of each that you can read.  It is gluten free and GMO free.

Essential Oils~ I know there has been a boom in the essential oils market, but they are something I believe help and use them for myself as well.  I don't think you need to use a specific brand but the links I have are to the supplier that I use.  I'll list the ones I have used consistently and found to be effective.  Each of these oils I use once a day, usually on the bottoms of the feet and target area with the exception of the Ancient Healing which I use a few times throughout the day.

Digestion Support  A blend including ginger, peppermint and lemongrass.  I use it mostly to help with constipation but I have noticed that it helps with Dianna's breath.  At times she seems to have sour breath related to reflux.  At her first diaper change of the morning, I rub it on her tummy.  I have learned to not use it just before nap time or bed time because it usually helps her have a bowel movement within 20 minutes.

Ancient Healing  Oil blend that includes frankincense, myrrh, hyssop, cinnamon bark and other oils that smell wonderful and have infection fighting and immune boosting properties.  Whenever Dianna has been out and about a bunch of germs, I will rub this on her feet.  Also, when she does succumb to a cold or other illness, I use this to help hasten healing.
Vitality  A combination of oils including myrtle, sage, chamomile to help balance hormones and thyroid function.  I use it once a day on Dianna's feet and neck, usually at night just before bedtime.

Potential  Oils in this blend include ylang-ylang, tansy, cedarwood and lavender.  I started using this more recently before Dianna goes to physical therapy.  The first time I did this, the therapist {without knowing about my essential oils use} noted that Dianna was more cooperative and calm for her session that day.  I use this mid-morning and then try to do some vocabulary work and other learning activities shortly after.

Also found at Heritage Essential Oils are roll on applicators and spray bottles.  I use the roll on applicators for all of Dianna's oils to make it easy to put on.  I carry them in a little rubber zipper pouch in the diaper bag so I have them whenever needed.

Probiotics~ Many now realize the benefits of probiotics and they seem quite essential to the GI tract in children with T21.  Constipation and low immunity can both be treated by the use of probiotics.  I currently am using Udo's Choice but have used other brands and been happy.  I also have yogurt on my daughter's menu frequently.

Itty-Bitty Yoga~

This is a book with yoga exercises to do for your baby, for lack of a better explanation.  It really is like playing with your baby and spending time with her.  My only regret is that I didn't find this book until Dianna was 18 months old.  There are some wonderful 'poses' to help strengthen and calm your baby, toddler or small child.  I like to use my own songs, poems or words in place of many found in the book but really like the exercises for Dianna.  I believe many of the poses help with brain development as they incorporate 'crossing the body' which has been shown beneficial to brain development.  This was even more important to me since Dianna never did a traditional 4 point crawl, a child's natural way to cross midsection.

And here is one for Toddlers and Pre-schoolers - 8 minute routines.  LOVE!

Gross Motor Skills

Baby Mirror~  Dianna used a baby mirror for a very long time.  It was the only thing she really enjoyed looking at long enough without fussing while on her tummy.  I'm certain any safety mirror would have been just as helpful but the link is to the one I have.

Black and White Images~ Just recently I cam across these black and white durable cards, Wee Gallery Art Cards and wish I had them for Dianna when she was still doing tummy time.  They are black on white and can be flipped for white on black.  There are a few sets, too: sea animals, woodland animals and more.  So cute and captivating!

Soft Rattles~ What is the purpose of a baby rattle?  Read all about the cognitive benefits of baby rattles here.  The main benefit I noticed with my little girls was hand-eye coordination and cause-effect.  But not all rattles are made the same.  She would find one that was easy to grasp but would often bang herself on the nose or in the eye as she was learning to control her hands.  The solution is a soft, stuffed rattle.  But many of those were difficult for her to pick up.  The ring was not an instinctive shape for her to grasp.  I found some very inexpensive soft, stick like rattles made by Garnimals.  I haven't seen them lately but did find an adorable doggie taggie one that is the same idea.

Chiming Wobble Toy~ I have an apple that I call Happy Apple.  Dianna loved this toy and it was key
in teaching her to turn onto her side and tummy from her back.  I don't think the apple is for sale anymore {I got ours at a thrift shop} but this clown is the same concept, a chiming wobble toy that is brightly colored.  And I love many of the toys by Tolo.  They are very durable and encourage child development.

Gross Motor Skills in Children with Down Syndrome~ This book is invaluable for helping your child at home whether or not you use outside therapy.  Dianna certainly needed help learning to do things that I never taught my other children learn to do like rolling over.  The has not been more evident than inn her journey to walking.  The book was a bit difficult for me to grasp the over all layout of at first, but after using it for a month it became easier.  It has very good descriptions of exercises and activities with accompanying pictures.  I cannot recommend this book enough!  Even with Dianna using a physical therapists, I do many more exercises found in this book to help her.

Baby Walker (For Stability and Confidence)
While Dianna was learning to walk and even after she walked, she would frequently use this walker.  It was light weight so she could easily maneuver it to turn and go where ever she wanted.  At the same time, it was stable and did not tip over on her.  We tried others that did tip and she fell and it wasn't fun.  Also, being shorter and on the smaller side, many children with Trisomy 21 would benefit from a smaller walker.

Her therapist would have her practice walking without it, but did not mind her using it as long as she got practice each day without it.   I found that the walker encouraged her to be on her legs more and greatly helped to build up her leg muscles which enabled her to walk.  Dianna was started walking between 18-20 months.

Fine Motor Skills

Wee Sing and Play Fingerplays {Speech and Language}~ As I noted in this post, I really believe Dianna has benefited so much with our little finger games.  She immediately improved her pincer grasp and I began noticing her using more words related to the songs we learned.  She not only will ask to play these games but will entertain herself in the car with them and that's without the cd playing!

Piggy Bank Put-And-Take Toy~  Another gem in learning to control hand movements, eye-hand coordination and fine motor skills.  I think because it plays music {I'm convinced music helps children with Down syndrome learn} Dianna was more motivated to play with this toy and get the coins in the slots.

Gumball Machine Toy~ Again, the one we have doesn't seem to be readily available {unless you
want to pay $80} but the one I linked to is almost identical except for color.  Dianna rarely tires of putting the balls in the machine.  At first it is easy to play with, the balls easily can be placed int he wide opening.  But there are some details that require more work.  The next step for Dianna was learning to open the door to retrieve the balls.  She then learned to pull the lever to get the balls to come out.  She is still working on turning the key to let the balls drops.

Magnadoodle or Magnet Writing Tablet
This has been great for Dianna to learn proper grip.  And it's portable so we can bring it for her to have fun and practice while out. We use one without the extra pieces but the pieces can be beneficial as they work like a puzzle.

Lacing Cards
These are quite a struggle for Dianna right now (just turned 4 years old), but she gets some great practice.  I found a very inexpensive set in the dollar section at Target.  We sit together and I show her how to hold the shape while she pokes the lace through one hole and pulls it through the other side.  She can get it into the hole but is really working on keeping it from falling out.

Oral Skills~ Speech, Language and Feeding

Baby Signing Time {Fine Motor Skills}~ There are different camps out there as to whether or not teach your child to sign.  Does it discourage vocalization?  I don't know.  I don't rely only on signing but I have been teaching Dianna every day signs to help her communicate when she really wants to.  I will say that she does say or at least try to say the words that she signs.  I learned the signs with her.  Another music note, the signs in the Baby Signing Time {not the Signing Time ones though} are taught along with a catchy song.  Dianna will now sign and say baby when she wants to watch these videos.  We have volumes 1 and 3 but I am hoping to get 2 soon.

DK Touch and Learn Flashcards~ I'm a firm believer in stimulating many senses when teaching.  These flashcards are durable and have bright pictures, not cartoon drawings, of items.  On each card is a small section with a tactile element such as a patch of fur on a dog or a sticky area on a piece of bread with jelly.  The back of the card gives some ideas on what to talk about in relation to the card.  Part of learning vocabulary is not just seeing the item and learning its name but talking about it over and over.  These are a great tool.  I just wish the first words had some more basic things other than a firetruck and tractor.  There are many sets though.

Food Chaining~ Teaching Dianna to eat wasn't as easy as giving her mooshy food then progressing to more and more texture and finally to table food.  She really was sensitive to the textures and flavors of food.  When I learned about food chaining, she really began to enjoy more types of food.  This is a link to a source of information that I found helpful, but there is a book that you may want to get if you are having much difficulty in helping your child learn to eat {gagging, chocking, aspiration and just not wanting to try other foods}.  Basically, you should not introduce a new flavor and a new texture of food at the same time.  Dianna really liked sweet potatoes.  So instead of switching her to chunky food like baby chicken noodle soup, I just cut small chunks of a cooked sweet potato.  Once she was used to the texture because she was familiar with the flavor, I gave her soft chucks of other food.  She can eat anything now and she is just under 2 years of age.  She even ate Annie's gummy bunnies today!

ARK Products~ Even with Dianna becoming more receptive to different foods, she still needed to be taught some things about chewing.  I used the tips found in this link to encourage her to chew.  Also from ARK is a drinking bear which we are using for learning to drink from a straw.

Flash Cards
Any cards will do, remind your child to look at your mouth so they practice saying each sound correctly.  Right now (she just turned 4 a week ago), Dianna and I are doing phonics flashcards as I hope to give her practice in forming sounds, but also get a jump start on reading.  She loves doing flashcards even more than having me read to her.  It is a great Mommy and me time and only requires a few minutes a day.

Picture Books
Reading, the same book over and over especially, helps increase vocabulary and encourages practicing fun sounds.  Rhyming books and books with routines as well as books with simple preschool concepts (big/small, colors, in/on/out, happy/sad, etc.). I like to learn the signs for some of the words and use them when we read the book.  I have found that Dianna learns words better when she also learns the signs for them.

Some of our favorites have been and are:
Big Red Barn by Margaret Wise Brown
Little Blue Truck
The Going to Bed Book
Blah Blah Black Sheep

1 comment:

  1. Anonymous12:09 PM

    Thank you for sharing your life, somehow it has reached to me. Cannot help to see that you have learned and shown so much wonderful info concerning your daughter. I have no experience like yours, but feel led to encourage you to turn to Jesus Christ , our almighty God by asking for His help that is exceeding and abundant above all that we ask or think. This life is very short in view of eternity, please for your sake and your children have faith in God.Hope you will be encouraged to and The Lord Bless you. From Kim


Catching my breath. Be back ASAP.