Factoid Friday: 7 Good Reasons to Breastfeed Your Baby With Down Syndrome

It may be difficult to breastfeed your child with Down Syndrome in the beginning.  I had to train Wyatt to latch properly and then how to eat without either choking or exhausting himself.   I was asked many times by (mainly) well meaning friends why I would bother.  I would mumble in my sleep deprived haze about antibodies and future weight issues.  Today's Factoids, now that I am a little more coherent, are good reasons why you should breastfeed your baby with DS.

1)  Breastfeeding provides antibodies and protection from illness.  Children with Down Syndrome are susceptible to bowel and respiratory issues.  Breast milk provides antibodies to fight infection and is easier to digest than formula.

2)  Breastfeeding improves mouth and tongue co-ordination which will aid in speech and language development.

3)  Breastfeeding promotes increased brain growth due to DHA, a fatty acid that is not found in most formulas or cow's milk.  Breastfed children score higher on IQ tests than those raised on formula;  this brain stimulation is particularly important in learning disabilities such as Down Syndrome

4)  Breastfeeding provides the opportunity for extra sensory stimulation as there is more skin to skin contact.

5)  Breastfeeding fosters closeness.  It offers more time to cuddle and spend time and get to know a special needs baby better.  It also boosts the mother's self esteem by providing a way that she can do something meaningful for her child and their health.

6)  Breastfeeding enhances mothering skills.  The patience, encouragement, coaxing and teaching used to help the baby learn to breastfeed will be employed over their lifespan to help them reach their goals.

(Becky Flora, BSed, IBCLC, 2001)

Finally, Number 7 is on me...

7)  Breastfeeding reduces the risk of Type 2 diabetes.  People with Down Syndrome are prone to Type 2 Diabetes for many reasons, including increased insulin resistance, reduced lean muscle mass, increased weight and fat storage. 

And, that's the facts, Jack.  Happy Friday.

Therapy Thursday: Shaping Up

If you haven't realized it by now, hypotonia is one of, if not the major problem for people with Down syndrome.  The muscles are not only slower to respond and can be weaker overall, but they also have reduced endurance.  Ligaments are more elastic and joints more movable which often causes unstable motion.  Compensation is common whereby a child will learn to use one set of muscles as an alternative for a weaker set; this will cause improper motion and often result in chronic pain.  Obviously, since Wyatt is still a little baby, we can't tell him to drop and give us twenty or get him to blast on his quads.  So what then?

Most of what we can do for Wyatt (at this stage at least) is through play.  Thanks to our OT and workers from ICDP, we have a series of positions to allow him to play in which will help build specific muscles and develop specific skills. Each of these corresponds to a specific stage of where the child is positioning themselves (Supine - on their back, Prone - on their stomach and then sitting)  The following information is courtesy of Positioning for Play:  Home Activities for Parents of Young Children by Rachel B. Diamant (1992).

Child Lying on Back, Facing Parent (Supine)

Sit on the floor with your back supported by a couch, chair or pillows.  Stretch your legs out in front of you and place the child between your legs.  Support their head with a small pillow or blanket roll.  Bring the child close to you so that their bottom is close to your body and that their legs and knees are bent.  Ensure their arms are down and close to the body.  Ideas for play:  Hold a toy and encourage the child to reach for it and explore, sing songs, play patty cake, try baby massage or use wrist and ankle rattles.  Encourage the child to reach their feet.

This position:

• Encourages the child to keep the head in line with the body with the chin tucked and the body straight
• Encourages the arms to be forward and down and the hands to come together
• Encourages the hips to be bent, the legs together and relaxed
• Develops eye contact with parent and own lower extremities
• Enables reaching, hands to touch each other, the body and toys
• Develops stomach muscles
• Reduces arching

Child on Your Lap (Supine)

Place yourself on a comfortable chair or couch with your feet on an ottoman or coffee table so that your knees are at a 90 degree angle.  Place your child on your lap, facing you so that their legs are on your chest (with their feet reaching for your face) and their body is resting on your thighs.  Keep the child's legs together and their bottom securely against your waist.  Hold their hands or shoulders to keep their arms forward and rest their head on a pillow or blanket roll to ensure the chin is tucked in.  Ideas for play:  Sing songs, make faces, imitate sounds, use ankle rattles, baby massage, place a toy on the child's stomach to encourage them to explore it.

This position:

• Encourages the child to keep the head in line with the body with the chin tucked and the body straight
• Encourages the arms to be forward and down and the hands to come together
• Encourages the hips to be bent, the legs together and relaxed
• Develops eye contact, hands and legs
• Enables the hands to reach and touch legs/feet
• Develops stomach muscles
• Reduces arching
• Maintains the flexibility of the legs

Child Lying on Parent's Chest (Prone)

Lie on your back with your head on a pillow and place the child on your chest so that they are looking at you.  Hold the child at the chest so that they can support themselves on their elbows.  When they can support themselves on their elbows, support their bottom in order to facilitate them lifting up their chest.  Ideas for play:  Encourage head and chest lifting by singing, talking, making funny noises/faces, move in a slight bouncing or rocking manner to accustom the child to movement, encourage them to touch your face.

This position:

• Develops head control
• Developms muscles in the arms, shoulders and back
• Encourages child to be comfortable lying on his or her stomach

Child Laying on Stomach, Propped up with a Towel (Prone)

Place a towel roll under the child's chest as they are lying on their stomach.  Bring their arms forward, insuring they are in front of the towel.  Push down gently on their bottom if they require more assistance to push up on their elbows/hands.  Ideas for play:  place a safety mirror, pictures or interesting toys in front of of the child.  Encourage them to explore a fuzzy toy.

This position:

• Encourages the head to be up and be in line with the straight body and the chin to be tucked.
• Encourages the arms to be in front and out from under the child (or behind)
• Encourages the elbows to align under or in front of the shoulders and the hands to be forward
• Encourages the hips to remain straight, flat and the legs to be parallel and not splayed.
• Develops head control
• Develops arm, shoulder, back and neck muscles.

Child Lying on Stomach, Supported by Parent (Prone)

With your back supported by a piece of furniture or pillows, sit on the floor and lay the child on their stomach in front of you.  Hold one hand under the child's chest and place the other on their buttocks.  Lift the child's chest with your hand and encourage him or her to push up on their elbows.  Keep the child's bottom flat and the arms in front of the shoulders.  Ideas for play: place a safety mirror, pictures or interesting toys in front of of the child. Tap the chest lightly as you encourage them to lift.  

This position:

• Develops head control
• Develops arm, shoulder, back and neck muscles.
• Encourages the head to be up, in line, the body straight and the chin tucked
• Encourages the child to prop up on elbows or push up chest with arms straight
• Encourages the arms and hands to be forward and the elbows in front of or in line with the shoulders
• Encourages the hips to remain straight, flat and the legs to be parallel and not splayed.

Child Sitting on Parent's Stomach (Sitting)

Lie on on your back with your knees bent and a pillow under your head.  Place the child on your stomach, facing you, with their back and hips against your thighs.  Make sure their legs are 90 degrees to the rest of their body.  Hold the child by the hips and help them balance;  ensure the arms and legs remain forward.  Ideas for Play:  Gently rock and bounce to encourage balance.  Sing "riding songs" and play horse.  Imitate sounds and each others expressions.

This position:

• Develops head control
• Develops back, body and hip muscles
• Develops balance
• Develops eye contact and facial expressions
• Encourages the arms to be free for play
• Encourages the head to be up and be in line with the straight body and the chin to be tucked.
• Encourages the body to be straight and upright, the shoulders down and the arms forward
• Encourages the hips to bed at 90 degrees
• Encourages sitting properly, not sitting on tailbone

Child Sitting on Parent's Leg (as Parent Sits on the Floor)

Sit with your back supported by a piece of furniture or cushions.  Sit the child on one of your thighs so that the child's feet are flat on the floor.  Support the child with your arm, sit them close and ensure their hips are bent to 90 depress.  Ensure the arms are forward.  Ideas for Play:  Sing riding songs, bounce gently and play horse, introduce and hold a toy for exploration, read a story.

This position:

• Encourages the head to be upright, straight and inline with the body while the chin is tucked
• Encourages the shoulders to be down and the arms forward
• Encourages the hips and knees to be at 90 degrees while the feet are flat on the floor
• Encourages sitting properly, not sitting on tailbone
• Encourages the arms to be free for play
• Develops head control
• Develops back, body and hip muscles
• Develops balance

Child Sitting on Parent's Lap while Parent's Legs are Crossed

Sit with your back supported by a piece of furniture or cushions and sit cross-legged.  Sit the child in your lap with their back and bottom are close to your body.  Place their legs over yours so that their hips and knees are at 90 degrees and their feet are flat on the floor.  Support the child's chest if need be with one of your hands.  Ensure their shoulders are down and the arms forward.  Ideas for Play:  Singing finger play songs, patty cake, etc, take apart or put together snap together toys, sing riding songs and gently rock or bounce.

This position:

• Encourages the head to be upright, straight and inline with the body while the chin is tucked
• Encourages the shoulders to be down and the arms forward
• Encourages the hips and knees to be at 90 degrees while the feet are flat on the floor
• Encourages sitting properly, not sitting on tailbone
• Develops head control
• Develops back, body and hip muscles
• Develops balance
• Encourages arms to be free for play
• Reduces arching or extension of body in children with tight muscles

Child Sitting on Parent's Lap while Parent Sits on Couch or Chair

Sit on a couch or chair and sit the child on one of your thighs and put their feet flat on the couch (between your legs).  Support their head and back with your arm, ensure their shoulders are down, their arms forward and the hips and knees are bent at 90 degrees.  Ideas for Play:  Sing riding songs and play horse, introduce a new toy to explore, read a story.

This position:

• Encourages the head to be upright, straight and inline with the body while the chin is tucked
• Encourages the shoulders to be down and the arms forward
• Encourages the hips and knees to be at 90 degrees while the feet are flat on the furniture
• Encourages sitting properly, not sitting on tailbone
• Develops head control
• Develops eye contact
• Develops back, body and hip muscles
• Develops balance
• Encourages arms to be free for play

 
We have found that many of these are positions that we naturally hold him in.  It is also great to be aware of what skills we are honing or what muscle groups we are helping to develop. Also the play portion keeps it from being "work", which is nice for all of us.  Both the babies love their floor time and it feels good for us to be doing something that will help Wyatt develop to the best of his ability.

At Home with Wyatt and Zoe

If a picture is worth a thousand words, then a video clip must be worth, what?  A million?  Two million?

I've been asked to post more of these by a few of you.  I am also exhausting myself, so to keep an easier pace (as we are just over halfway through this challenge), I'm going to let them tell you how they are doing this week.

Both are chewing constantly... those teeth are coming in but extremely s-l-o-w-l-y.  They are grumpy at random and everything is chew, chew, chew!  Wyatt likes one particular red chewy;  it's different sections have different textures and by chewing on all of them he is developing his facial, mouth and tongue muscles.  Zoe... well, she is just a ham (who always loses her soother).  I tried to get Wyatt doing a few things, but Zoe had a "tookie" crisis and tried to climb up on my knee.  Yes, that is black nail polish.

Round two.  Tried to get more of Wyatt, but Zoe dropped by for a visit.

Finally, Zoe Attacks!  (And you get to be nommed by her.)  Enjoy!
 

A Brief History of Down Syndrome, Part 2: Before John Langdon Down

As current data suggests that DS occurs in 1 out of every 700 or so births, you would think someone would have noticed it before 1858 (perhaps in every culture since the dawn of time).  That would be correct.  As Down syndrome has been stigmatized and de-stigmatized at several points in human history, the physical evidence is few and far between.  However, it is still there.

From Prehistory

There are several instances of material evidence from prehistory that experts believe depict Down syndrome.  Clay tablets from Babylon dating back to 4000 BC record congenital 'malformations'.  Included are 62 human 'malformations' (and associated prophetic relations).  There is evidence from the Paleolithic era (18,000 years ago) which may depict Down syndrome or a related condition.  Taurodontism has been found in two teeth of this era, which is often associated with chromosomal disorders such as trisomy 21. (Savona-Ventura, ?).  A skull from a monastery at Breedon-on-the-hill in North West Leicestershire in England dates to approximately 700-900 AD and is alleged to have numerous features typically seen in individuals with Down syndrome.  Among those listed are an overall reduced size, microcephaly, a smaller skull cap, small maxilla, smaller skull length, thin cranial vault bones, smaller face and cheek bones, brachycephaly,  thick mandible, mandibular prognathism and irregular tooth development. (Starbuck, 2011).

Tolteca terracotta figurine

This terracotta figurine from Mexico dates to the Tolteca culture (approximately 500 AD) and depicts facial features that suggest Down syndrome:  small, up-slanting eyes, a small face, noticeable tongue, a weak nasal bridge and an open mouth. 

Olmec Were-Jaguar

Olmec mother holding jaguar child

One of the more disputed theories lies with the Olmec culture (also of Mexico) which existed from roughly 1500 BC to 300 AD.  The surviving art of this culture often depict jaguars mating with older women of the tribe to produce 'jaguar-babies' or 'were-jaguars'.  It has been put forth by numerous sources that these 'jaguar babies' probably had Down syndrome based on the fact that they were a) born to older women, b) were depicted with sharp teeth (possibly ectodermal dysplasia), c) had small, slanted eyes, d) had flattened noses, e) were often rounder or more overweight than other representations of children (hypotonia and hypothyroidism) f) were often depicted in unusually flexible positions (suggesting hypermobility), g) when depicted as infants, were depicted limp (hypotonia again)  and h)  had cleft heads (enlarged metopic suture). Again, the physical evidence is moderate at best making this a widely disputed argument in the anthropological world. 

The Tumaco-La Tolita culture of Columbia and Ecuador (600 BC to 350 AD) is known for depicting a variety of diseases and ailments in their work.  One figurine in particular is suggestive of Down syndrome (Bernal, Brecino, 2006 and Starbuck, 2011) as it depicts a short, obese person with small, up slanted eyes, an open mouth, a small nose with depressed bridge, a small face relative to the rest of the head, a protruding jaw and thickened fingers.

Historical Evidence Potentially Depicting Down syndrome

One of the oldest is a painting from roughly 1505 referred to as "Ecce-homo-scene".  It has been put forth that the child depicted in this painting has the characteristics of Down syndrome.  The eyes are small and slightly up slanted, the neck is broad, the ears small and low set, the face small compared to the rest of the head, there is a weak nasal bridge, the mouth is open and there is an overall stocky appearance.  It could be inferred from this painting that the child is a type of street performer;  in fact there is a monkey on a leash which is grooming the child's hair. Sadly, this last aspect would fit with the times. (Starbuck, 2001)

Virgin and Child with Saints Jerome
and Louis of Toulouse

 The next are a series of religious paintings that have been attributed to Andrea Mantegna (1431-1536).  The first, Virgin and Child with Saints Jerome and Louis of Toulouse (approx 1455 AD) depicts a child with up slanted small, widely spaced eyes, an open mouth with a protruding tongue, short digits with an in-curving 5th finger and a weak nasal bridge with a "button" nose. Also notable is the hypotonic or relaxed facial expression.

Madonna and Child

Virgin and Child

Around 1460, Mantegna created Madonna and Child which has also been suggested to exhibit characteristics of Down syndrome: epicanthal folds, small narrow eyes, an open mouth, hypotonic expression, flattened nasal bridge and button nose.

Also from (approx.) 1460 AD, is a painting entitled Virgin and Child which experts believe to also exhibit characteristics of Down syndrome.  Among those listed are:  epicanthic folds, oblique eyes, open mouth, protruding tongue, in-curving 5th finger, widely spaced first and second toe, a smaller head, a short, broad neck and hypotonic facial expression. 

It has been suggested that the reason for several of his paintings having children with Down syndrome features (while others notably do not) is due to the claim that one of Mantegna's 14 children had Down syndrome and one of his patrons, the Gonzanga family, also had a child with Down syndrome (which reportedly died at four years of age). (Starbuck, 2011)

The Adoration of the Christ Child

One of the most famous examples is found in the Flemish painting The Adoration of the Christ Child, created around 1515 by a follower of Jan Joest of Kalkar.  There are two individuals in this painting that have strikingly different facial features than the others and it has been argued that they depict people with Down syndrome.

Detail of The Adoration of the Christ Child

The first figure is an angel to the right of the Madonna.  Unlike the Madonna, the angel figure displays a flatter than normal face, up-slanting narrow eyes, epicanthic folds, flattened nasal bridge, upturned button nose, a downturned mouth and shorter than normal digits.

Second detail of The Adoration of the
Christ Child

The second figure is a shepherd boy located in the background.  It has very similar features to the previous angel (ie: flatter face, up-slanting narrow eyes, epicanthic folds, a flat nasal bridge, a button nose and a downward turned mouth).  This figure however, also has widely spaced eyes and a hypotonic expression on the face.  It is to be noted that there is a second "daytime" version of this painting where these characters are more typical looking. (Starbuck, 2001)

It is well known that those with disabilities, both learning and otherwise have been scorned, ridiculed and even regarded as evil throughout the ages.  Even Aristotle stated in his Politics: "...as to the exposure and rearing of children, let there be a law that no deformed child shall live."  This has persisted right up to modern day and beyond John Langdon Down.  With this artistic evidence, it makes one wonder if not everyone felt this way.  Aside from the were-jaguars, it is interesting that there are two separate versions of the Adoration of the Christ child and that the infant Jesus was depicted in such a manner.  I would like to think that this would suggest that small pockets of free thinkers, small groups of people who were touched by Down syndrome saw beauty, not an abomination.  I would like to think that there have been people throughout history that did not fear and despise those that were different, but rather saw them as something special.  So much so that they would depict their 'Savior' with those same characteristics.

------------
Bernal, J. E., and I. Briceno, 2006 Genetic and other diseases in the pottery of Tumaco-La Tolita culture in Colombia-Ecuador, Clinical Genetics, 2006

Savona-Ventura, Charles ( ) Historical Perspective Congenital Malformations: a historical perspective in a Mediterranean community

Starbuck, JM, On the Antiquity of Trisomy 21:  Moving Towards a Quantitative Diagnosis of Down Syndrome in Historic Material Culture, Journal of Contemporary Anthropology, October 2011
------------

A Brief History of Down syndrome: Part 1, Part 2, Part 3, Part 4, Part 5, Part 6, Part 7

Hearing Complications with Down Syndrome

Not only does hearing allow us to experience the sounds around us, but it plays a major role in the development of speech. Children with Down syndrome can have a variety of hearing issues, both congenital and acquired, which if not treated can lead to greater problems.

Congenital disorders of the ear generally involve a sensorineural issue (whereby the sensory information is not transmitted or received by the auditory nerve properly). Often this involves the higher tones and is therefore not discovered until later on (as the child would continue to hear many of the sounds around them) and would therefore impact on their development (especially with speech). Routine screening allows for the discovery of congenital ear disorders. Down syndrome may affect any or all of the structures in the middle and inner ear.

Acquired hearing disorders can be divided into two categories: conductive hearing loss and sensorineural hearing loss. These can occur separately or together; many children with Down syndrome have a mixture of both.

A build up of cerumen (ear wax) can easily interfere with the functioning of the eardrum. If mobility of the eardrum is decreased, the sounds transmitted to the middle ear will be decreased as well. This is easily treated by a variety of measures including drops and suction removal by a qualified professional.

Those with Down syndrome can be more susceptible to more infections than the general population and as a result have a higher incidence of ear infections. Over time and especially if left untreated, these infections can cause damage. Fluid buildup in the middle ear, a ruptured tympanic membrane (eardrum) and difficulties with the ossicles can all result from infection.

As well, a condition commonly referred to as "glue ear" can develop. Sticky mucus can accumulate in the middle ear which can literally encase the ossicles and prevent them from vibrating (and therefore, transmitting sound). People with DS can produce more or stickier "glue" which frequently becomes infected as it does not drain away. Further hindering drainage is overall smaller Eustachian tubes in those with Down syndrome as well as the tendency for these tubes to be sharply curved.

With both of these conditions, antibiotics are most often prescribed. If the fluid or glue buildup is persistent, the child may have to undergo a tympanostomy and have "tubes" or grommets placed in the eardrum to allow the fluid to drain away.

As with any potential problem, early intervention is the key. Have your child assessed early by a trained audiologist and your medical team to prevent and minimize the chances of long term hearing loss.

"Anatomy of the Human Ear" shared with permission by Perception Space-The Final Frontier, A PLoS Biology Vol. 3, No. 4, e137 doi:10.1371/journal.pbio.0030137. Creative Commons.

Day of Rest?

Ahh Sunday.  So we meet again.

Sundays start out with that promise of sacred time.  I'm not talking in the religious sense; it always starts out feeling like stolen time for you and your kids.  You may get to sleep in a bit.  Breakfast will be involved.  Coffee will be savoured.  Fun things will be planned for the afternoon. These things rarely come to fruition however as the illusion of Sunday morning is usually shattered by 10:30.  By crying.  Sometimes it's actually the kids doing that. 

I'm often asked questions like "how do you manage" or "where do you find the time?".  Other than my usual stunned look, I often answer with "I don't know" or "when I figure it out, I'll tell you?".  The truth is, time is pretty finite in the waking hours.  When I am off (and not actually sleeping after my night shifts), I have a limited amount of time to get everything [read: anything] done.  Period.

Our 'day of rest' usually goes something like this:

Assuming one of us isn't already up by 6, Quinn gets up around 7-7:30 ish.  There is usually quiet cereal and TV.  The babies wake up somewhere around 8:30 or nine and the feeding commences.  Two babies get their bums changed, two babies get dressed and brought downstairs for some floor time (they spend a lot of time on the floor to build their muscles).  There is a "Medela moment".  We are now somewhere around 10:00 or 11:00.

Lunch is discussed and then abandoned as a topic as we are inevitably interrupted by one of/all of the kids or in a forgetful stupor one of us decides to wander away to try and complete at least one simple task (ie, throw in a load of laundry, unload and reload the dishwasher, fold a load of laundry, what have you).  We usually opt for brunch at this point as quiet cereal and TV were some time ago.  We haven't eaten yet (or Sean has eaten lightly) and Quinn is now ravenous and screechy.  Sean either makes something lovely or "quick and dirty".  I wolf my food in between separating/rescuing/soothing/cleaning/redirecting at least one baby.  Quinn has resorted to making "crafts" out of everything in sight.  Small bits of paper are removed from Zoe's hand/gaze/throat.  Wyatt is either asleep on his tummy or quietly watching everything.  They usually start shouting around now and it is time to feed them again.  Which we do, including real food.  Babies are changed again as we have to hose them both and the kitchen down.  There is another Medela moment.

Then it is nap time.

Naps are a real bone of contention around here.  I'm all for them.  I am pro-nap.  I would rather we all have a little siesta in the afternoon and go to bed a little bit later then have the alternative which involves a lot of screaming, crying and general carry-on.  Quinn napped right up until last year when his daycare provider "helpfully broke him of the habit" [translation:  felt it was stupid and since she drove around all afternoon ferrying various children hither and yon, it was an easier for her].  If anyone needs a nap around here in the afternoon (other than me, of course) it is him.  If he doesn't sleep, he is an absolute terror by suppertime and most of that time will be spent on the stairs in "time out".  A nap for Wyatt and Zoe will be attempted.  They both may nap for a few moments initially, but that will end.  Especially if Quinn is actually asleep as we can only have two out of the three napping at the same time.  One will wake up, (usually Zoe) and be screechy.  Assuming she won't go back to sleep after her soother is found and replaced and hasn't woken up her twin, she'll be brought down to the living room to play.  Where she will until she passes out an hour later, at which time Wyatt wakes up hollering.  If Wyatt wakes up first I can bring him down and plunk him in the swing and he will sleep, but this only happens if Quinn is awake.  Confused yet?  All of this boils down to NO NAP FOR MOMMY.  None.  Dee-nied.

Now it is somewhere around 3 or 3:30.  My eyes are closing now whether I like them to or not.  I hit the Tassimo.  It is short lived as I seem to be able to metabolize caffeine very fast.  I am even more tired 45 mins later. Sean may stumble off to have a nap or have one downstairs as he is entertaining Quinn.  Babies are changed post-nap and put on the floor again.  I may scatter toys around and let Indiana Zoe discover them or lay on the floor and play with them.  One of them will have a "problem" (fussy) so as one parent goes off to do whatever project they had to do for the day, the other entertains kids (usually me). Now there is talk of dinner.  Sean goes off to make that/set up the baby food as I start feeding the babies.  More highchair time.  More hosing.  More diaper changes.  Another Medela moment. 

Dinner is prepared and scarfed down in record time as there is usually at least one member of the family crying or having an issue.  Dishes are attempted, but usually abandoned in the sink.  Issues are addressed and babies are played with as Quinn putters around us, interacting with some or all of us.  It is somehow around 8 now (I am surprised each and every time).  Babies are taken upstairs and if it is a bath night, that ritual is begun.  One of us (we alternate when I am home) is in charge of undressing, un-diapering, towel wrapping, towel unwrapping, drying off, diapering and jam-ifying.  The other is in charge of bathing.  We started out each washing a baby with two tubs but we found that an assembly line type operation works better.  One of us nips off to make up their bedtime "top up bottle" (of EBM) and then its more feeding.  One of us each gives a bottle (we alternate), snuggles and then they are put to bed.  It is now somewhere between 8:30 and 9:30.  Quinn's needs are now met (he bathes opposite to the babies... it was a compromise that makes our evenings not drag on forever) and he is put to bed, usually by Sean as I am having another Medela moment.

Depending on what Monday morning will bring, we either have a few moments to ourselves or one of us is doing laundry or escaping for some alone time.  Or collapsing in a heap in front of the TV.   If I'm working the next day, I'm off to bed.  G'bye Sunday, we hardly knew ye.

So, to answer the question "How do you find time to do it all", the answer really is "I don't".  I also don't even try any more.  "Fires" are put out and we do the bare minimum.  Larger cleaning projects are tackled just like that:  as a large project that takes up a block of time.  Despite all the multitasking and my ability to do just about anything while holding a baby (including write this) , it doesn't get done.  Oh well.  It used to drive me nuts, but I've come to terms with it.  It will all get done... eventually.

Our "day of rest", like any other parents, is a joke.  We have to do two loads of baby laundry a day to keep up with them.  I still wouldn't trade it for the world. Quinn, when not being "Dynamo:  The Kid Dramatic" is really freaking funny and his younger siblings are completely edibly adorable.  I know I have said this before, but Sean and I are incredibly lucky to have each other.  It works.  It gets done.  I don't know how, but it does.  Much like this blog entry, which has taken a ridiculous amount of time to write (and is probably poorly edited).

Happy Sunday.  Enjoy your day of "rest", whatever form it may take.

Added to the 'Define Normal' Blog Hop! Find out more @ Just Bring the Chocolate

Birth Stories

Birth stories are unlike any others.  They are a touchstone for many women, for many families.  I have seen it over and over, women bonding over their stories of pain and fear and finally joy.  I can't think of a greater leveler than birth.  Sometimes the story is happy, sometimes it is not.  Sometimes it just ends a bit differently than you expected.

I have a little baby with Down syndrome (and a twin that does not).   In the time since their birth, I have found that there are elements in our story that are very similar to so many others.  I have read quite a few since then and there have been some, that for one reason or another, have really resonated with me. Today, instead of me just telling you any old thing, I am going to do something a little different.  I am going to share stories of other parents and other babies with Down Syndrome.  Grab a cuppa and a snack and perhaps a handkerchief.  Today is about Birth Stories... with a little extra.

A Birth Story 

Nella Cordelia:  A Birth Story

Lucy: A Postnatal Diagnosis

The Unplanned Journey

Mat's World

Each of these links is a story of anguish and of love.  Initially there is sorrow, but out of that has grown great joy.  Just like us.  I hope you like these stories as much as I have.

Just in case you are new to this blog,  here is our story:

It Only Hurts When I Breathe (Wyatt's Diagnosis)

The Waiting Game (Visiting the Specialists)

The Best Laid Plans (Wyatt and Zoe's Birth Story)

Checking In (in the NICU)

One more little thing before I head for my bed: our story has been shared at Maternity.com.  I was interviewed last month and the story published on Thursday.  You can read it here. Thanks to Jennifer Allen for the opportunity.

Enjoy your Saturday;  I hope you enjoyed Story Time. 

Good night, little one.

Factoid Friday: Perceptions of Down Syndrome

Today I would like to present a series of recent studies about Down syndrome that focus on the overall impact that it has on the family and the well being of individual family members (including the person with DS themselves). The information in each of these studies was gathered with new or expecting parents of a child with Down syndrome in mind.

The first study asked families how they felt about their child with Down syndrome. 

• 99% stated they loved their son or daughter
• 97% stated they were proud of their son or daughter
• 95% stated that their other children (without DS) had a good relation with the siblings with DS
• 79% stated that they felt their lives were made more positive by their son or daughter
• 5% stated they felt embarassed by their child
• 4% regretted having their son or daughter

"The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with DS and indicate that their sons and daughters are great sources of love and pride." - Having a son or daughter with Down syndrome: Perspectives from mothers and fathers., Skotko BG, Levine SP, Goldstein R., © 2011 Wiley-Liss, Inc

The second asked siblings of those with Down Sydrome how they viewed and felt about their brother or sister.

• 96% stated they were affectionate toward their brother or sister with DS
• 94% of older siblings were proud of their younger siblings with DS
• >90% planned to remain involved in the lives of their siblings with DS as they became adults
• 88% of older siblings felt that they were better people because of their younger sibling with DS
• <10% felt embarrassed by their brother or sister
• <5% wished to trade their younger sibling for another without DS

"The vast majority of brothers and sisters describe their relationship with their sibling with DS as positive and enhancing" - Having a brother or sister with Down syndrome: Perspectives from siblings., Skotko BG, Levine SP, Goldstein R., © 2011 Wiley-Liss, Inc

The third study asked people with Down syndrome (that were 12 or older) questions regarding their self-perception. 

• 99% expressed love for their families
• 99% stated they were happy with their lives
• 97% liked who they are
• 97% liked their siblings
• 96% liked how they look
• 86% felt they could make friends easily*
• A small percentage expressed sadness about their life.

(*Many of those who felt they could not make friends easily lived in rural areas where they were isolated)

"In our qualitative analysis, people with DS encouraged parents to love their babies with DS, mentioning that their own lives were good. They further encouraged healthcare professionals to value them, emphasizing that they share similar hopes and dreams as people without DS. Overall, the overwhelming majority of people with DS surveyed indicate they live happy and fulfilling lives." - Self-perceptions from people with Down syndrome., Skotko BG, Levine SP, Goldstein R., © 2011 Wiley-Liss, Inc

  

 ...And that's the facts, Jack.  Happy Friday!

"Wy" Not?

Wyatt, 7+ mos.

In four short days, my twins are going to be 8 months old.

Eight months already... it seems impossible. But here we are.  Not that long ago, both babies were oh-so-very small and oh-so-very helpless in the NICU.  They, and we,  have come so very far.

Continuing from last week, Zoe has indeed learned to crawl.  She is most definitely on the move.  We have started calling her "puppy" as you will look down and she will be happily gnawing on your foot/the table/something she shouldn't have (and you have no idea where she got that something from).  We are in trouble.  Big time.  She also decided to learn to sit up on Saturday.  I looked over at one point and there she was, casually sitting there like she had been doing it all her life.

Wyatt is still working on rolling on his back and rolling over again.  He was assessed at group last week and all are quite happy with his improvement.  He is a little behind according to the developmental scales (more on that next week), but he is progressing steadily at his own rate.  They were pleased with the level of head control that he has mastered as well as the way in which we continue to work with him frequently though play.  His trunk strength and control is progressing similarly.  Through this we are also discovering his capacity to learn, which so far doesn't strike me as being too bad at all.  He doesn't seem to have the ability to remember things that he hears right away (it may take him a few times before he associates a sound with a particular action, which is typical of children with Down syndrome).  He will, however, learn if he sees something.  He watches our faces intently and continues to mimic the facial expressions and sounds that we make.  It is loveable and fascinating all at the same time.

One of our newest "things" is the back and forth communication between the two.  Of course, we have suspected it all along;  a nod here, a touch there, holding hands all the time.  Now they have started to communicate verbally.  It started with raspberries.  Wyatt loves making "thhhpppptttthhhh!" noises and we encourage it as he is actively using his tongue to do it.  The other day, Zoe started doing it back.  Now, if you catch them at the right time, you will hear "thhhpppptttthhhh!" going back and forth between them, with the occasional "ga-ah!" or giggle or Zoe's feet thumpa-thumpa-thumping in between.  I can't tell you how darling it is, I can't even begin to give it justice.  It is wonderfully adorable, totally snorgable moment.  You will need insulin.

Rolling, sitting, crawling, communicating.  That's a lot for a handful of days.  It makes me both curious and apprehensive of the coming weeks.  Soon there will be teeth.  Soon there will be standing.  Soon there will be many more ways for both of them to give us heart failure.  Our journey continues as each milestone is ticked off one by one.  We have learned in the last almost eight months to not ask "why?" but to ask "why not?"  There are so many instances where we would not know the joy that both of them have brought us.  Why two?  Why not?  Why now?  Why not?

Why DS?

Well, "Wy" not?

Added to the 'Define Normal' Blog Hop! Find out more @ Just Bring the Chocolate

A Brief History of Down Syndrome, Part 1: How Down syndrome Got its Name

John Langdon Down was a physician in 1858 who was appointed Medical Superintendent at the "Earlswood Asylum for Idiots" in Surrey, England.  The asylum had been founded a decade before and was maintained as a charity for the learning disabled.  According to Wikipedia:

"People were astonished that he should wish to pursue a career working in the neglected and despised field of idiocy. He had been one of the outstanding students of his time with every prospect of election to the staff of the London Hospital. He was concerned that all children who were afflicted by mental alienation or incapacity of any kind were placed in the category of idiots and regarded as beyond help. He had been enthusiastic about hearing of an experimental school in Switzerland but on visiting it found the inmates neglected and the Patron of the school living it up in the West End of London."

He also denounced the current idea that higher educated women produced 'feeble-minded' children and felt that racial differences were of little consequence (which was very forward thinking of a Victorian gentleman) although he did go about it completely backwards. He published Observations on the Ethnic Classification of Idiots in 1866 where he categorized his patients by their physical or "racial" traits.  In this group were individuals which he felt displayed the features of the Mongols of China;  these became known as "mongoloid". Just prior to this, he had made the distinction between "cretins" (those found do have hypothyroidism) and "mongoloids".  Later on his sons would join him in his practice and continue to explore "mongolism". 

"Mongolism" was the most commonly recognized learning disorder by the early 20th century;  most people with the disorder lived out their short lives in institutions.  As Eugenics became popular, many countries including the US had forced sterilization programs for those with learning disabilities.  Nazi Germany adapted Aktion T4 which led to the systematic murder of hundreds of thousands who were judged "incurably sick, by critical medical examination".  

There were many theories about the origin of DS at this time, including maternal age, inheritable traits and accidents during birth.  It wasn't until 1959 that Jérôme Lejeune discovered the karyotype and subsequently, Trisomy 21.  

In 1960, Dr. Paul Polani discovered translocation and a year later Dr. Clarke discovered Mosaic Down syndrome.

Shortly thereafter, with the onset of genetic testing, it became the norm to institutionalize all people with learning disabilities, including Down syndrome.  The children were removed from their parents, before any bonding could take place and sent away.  I have shared this quote before but feel it is needed again;  this is the mother of a child with Down syndrome.

"Jason was born on June 27, 1974, and was diagnosed as having Down syndrome when he was only a few hours old.  Like many other parents, my husband, Charles, and I were told by the doctor, "Your child will be mentally retarded.  He'll never sit or stand, walk or talk.  He'll never read or write or have a single meaningful thought or idea. The common practice for these children is to place them in an institution immediately."  The doctor went so far as to say, "Go home and tell your friends and family that he died in childbirth.". 

Other professionals were consulted reinforced this philosophy.  One psychologist suggested that raising a child like this would put extreme pressure and strain on our marriage and that the constant disappointment over the years would surely destroy our family."

(Taken from "Count Us In:  Growing Up with Down Syndrome" by Jason Kingsley and Mitchell Levitz, two men with Down syndrome.   This is an excerpt on page three of the introduction, written by Jason's mother Emily.)

A Comparison of the Growth and Development of Institutionalized and Home-Reared Mongoloids During Infancy and Early Childhood was written in 1964 by D.J. Stedman and D.H. Eichorn.  This study opened the door for de-institutionalizing North America.  They found that depriving children of the basics of a steady significant caregiver and stimulation caused cognitive scores to drop even lower than those with Down syndrome alone.  They showed the medical community that those with learning disabilities have both emotional and physical needs that require fulfillment which in turn, fosters development. 

The Mongolian delegate successfully appealed to The World Health Organization in 1961 to drop references to "mongolism" and by 1969 "Down's Syndrome" was becoming more widely used over "Mongolian idiocy".   By the middle 70's, less and less children were being institutionalized and new advances were being made in pediatric medicine.  In the 1980's the average life span had increased to 25; in 2011 it is now in the 60's.

A Brief History of Down syndrome: Part 1, Part 2, Part 3, Part 4, Part 5, Part 6, Part 7

Types of Down Syndrome

"Down syndrome is just Down syndrome, right?"

"Some people have a mild case of it.  Like your boy..."

"He doesn't look like he has it... maybe the doctors are wrong"

(Random things people have said to me)

Today's Medical Monday is about the different types of Down syndrome.  As it turns out, not all instances of Down syndrome are exactly the same like my one friend there would like to think. As well, there is no such thing as a "mild case";  it is like being pregnant, you either are or you aren't.  There are three different types of Down syndrome.  In order to explain them properly, I am going to have to explain a few things in technical terms.  So buckle up friends, here comes the science...

You have 46 chromosomes (bundles of genes) in each of your cells.  Half of these you received from your mother and half from your father.   The exception to this are sex or germ cells (the ova or egg in the female and spermatozoa or sperm cells in the male) which only have half that amount (23) as they will hopefully combine with another sex cell and together make up the full amount.  Those cells with 46 chromosomes are referred to as diploid cells while those with 23 chromosomes are called haploid cells. 

A diploid cell will divide in order to make haploid cells;  this is called meiosis. It will first duplicate the genetic material and then sort out which came from where (Mom or Dad).  Some genes are swapped around at this stage which increases genetic diversity (Mom's blue eyes go in the Dad pile of genes while Dad's brown eyes go in the Mom pile, that kind of thing).  Now that there are two piles of mixed up DNA containing 46 chromosomes each, those two piles will divide into four haploid daughter cells.  During this last division, sometimes things do not go smoothly and things are divided unevenly (try ripping a dinner roll evenly in half and see if you do not have a new respect for cellular division). Sometimes one cell goes away with more information or an extra chromosome than the other one.  This is called nondisjunction.  There are many disorders that are a result of nondisjunction;  Down syndrome is just one of them.

Trisomy 21

When one of the cells comes away from meiosis with an extra copy of the 21st chromosome, it is called Trisomy 21. Every cell of the resulting zygote (and eventually, fetus) will have an extra copy of the gene and the results will be the characteristics of Down syndrome.  95% of the time, this is what happens.

This is what Wyatt has.

Translocation

Somewhere around 3-4% of the time, translocation occurs.  This is where a piece of a 21st chromosome breaks off during meiosis and attaches itself to another chromosome (usually #14).  This extra bit of #21, although attached to #14, causes the characteristics of Down syndrome to occur.  When this occurs, one of the parents is usually carrying chromosomes that are arranged unusually.

Mosaicism (or Mosaic Down syndrome)

This happens in 1-2 percent of DS cases.  The nondisjunction takes place after fertilization which creates some cells with an extra copy of chromosome 21 and some without.  How many cells have 47 chromosomes and how many have the normal 46 will determine how much and where the Down syndrome characteristics will be expressed.

Karyotype of a male with Trisomy 21

Welcome to the Family

Sunday is traditionally a family day around here.  It's a day of sleeping in and huge gaelic breakfasts.  It's a day for going to the park or cooking a giant piece of meat.  It wasn't a big stretch for me then to chose this day to write about families for the 31 for 21 Challenge. 

It can be hard news finding out that your child has DS, I'm not going to lie to you.  When we found out that Wyatt had AVSD and that he may have Down syndrome, my husband and I were devastated.  Initially.  Obviously as time has gone on, as we have educated ourselves and discovered what a joy our son is, that anger and disappointment have dissipated.  However, in the first inital stages, thanks to our overall ignorance of Down syndrome, (and let's face it, an overwhelming lack of support and facts on all sides) it was there, in all it's oogey-boogey glory.

Last month I ended with "The Big Tell"; how to tell people that your child has DS.  There is the other side, the people receiving the information.  I've run into some (mainly) well meaning friends and family that were at a loss as to what to say.  I feel for them, I do.  What do you say to that?  How do you express (what you think should be) support without hurting the new parents' (potentially) already raw feelings?  What can you say without looking and feeling like a doofus?

As time has gone on, I've compiled a (sometimes) humorous  list of  "Sh☠t Complete Strangers Say" in regards to my twins.  Today I have a different list:  "Things Not to Say to Parents of a Newly Diagnosed Kid with DS".  Many of these things have been said to my face. 

"God/The Universe/Mother Nature/Whatever/Whoever gives special people, special/disabled children."  (I'm not feeling so special right about now, thanks.)

"Down syndrome people are so loving/caring/happy" (Not always... sometimes they get sad like everyone else)

"I'm so sorry." (For what?  You didn't give him DS.)

"You're handling this better than I thought/I could." (How do you know how I am handling this?)

"Well, the older you get, the higher the chances." (How is this helpful?)

"Couldn't they tell?" or "Couldn't you do something about it?" (How is this relevant now?)

"I can't tell/He doesn't look it/He has a mild case/The doctor is wrong" (I had him karyotyped)

"Do you know how serious/how he will do in school" (He's just been born.  Did you know how your kids were going to do in school when they were just born?)

"He/she will do great things" (I don't know that right now...)

...and so on.  They may have the best intentions but it is like salt on an open wound. 

I'm a big believer in offering solutions as well as complaints, so here are a few ways to rephrase or "re-frame" what initially can be an awkward situation. 

"Congratulations!"
"Welcome little one!"
"He/she/they sure look like you/him/Great Uncle Wallace"
"When can I baby sit?"
"What do you need?"
"He/she will be fine"
"We will all learn from each other"
"We will always be here for you"

...and anything else positive that you would say to new parents.  As that is what they are, new parents.

One of the nicest things you can do for new parents is to educate yourself and show interest. Let the
parents be your guide however as they are in the initial stages of new parenthood and may not have the mental capacity to absorb a lot of new information. After all, they are hungry and sleep deprived. (Make them a sandwich for heaven's sake).


Oh, I almost forgot the most important thing to tell your friend or family that has just found out that their new child has Down syndrome:

"I love you."

That helps.  A lot.

Homecoming

Those that have "liked" or subscribe to Down Wit Dat's Facebook Page know that I share as many positive Down Syndrome stories as I can possibly find. There are a few that I would like to share today, for the first "Story Time Saturday" of the 31 for 21 Challenge. These are stories of inclusion and of love.

The first is about a girl from Texas named Mariah Slick who was nominated Homecoming Queen.

Azle nominates special girl for homecoming queen

Then, to everyone's delight, she won.

Mariah Slick, Student with Down Syndrome, Crowned Homecoming Queen in Texas 

Then, there is Chase Lollis, the Homecoming King at Dorman High School in South Carolina:

Finally, there is Regan.  The beautiful, caring and dedicated girl in the "Retarded" video that went viral earlier this week.  She made it for her brother Russell, who has Down Syndrome and Autism.  If you haven't seen it:

We will forgive her tears and we will forgive her spelling error. To her, the word is so loathesome, she can't even bear to write it.  Here are two more vidoes by her.  "Me n Russ":

and "Regan and Russell".

You can see in her face how much she loves her brother.  He is not an embarrassment, he is loved.  He is Russell.  My hope is that Quinn and Zoe grow up to be same caliber of advocate for Wyatt.  You can also see from the videos that have sprung up since that she is an inspiration to others.

Three beautiful stories about some very beautiful people.  Can you think of anything better for such a gorgeous fall day?

Just the Facts, Ma'am! Welcome to Factoid Friday

I have a feeling that 'Factoid Fridays' may stick around after the 31 for 21 Challenge is over.  Although it is shorter than one of my usual verbose entries, sometimes it is just nice to have the facts, ma'am.

Your Factoids For Today:

Down syndrome:

• Is the most common chromosomal disorder
• Occurs in 1 out of every 696 births
• Occurs independently of race, religion, creed, colour, socioeconomic status or nationality
• Occurs independently of any maternal or paternal activity prior to conception and pregnancy
• Has a higher incidence as mother's age increases, however 80% of babies with Down syndrome are born to women under 35
• Has a range of learning disability, not a set level of "functioning".

With Down syndrome:

• There is a 40% chance of a congenital heart defect (that will be present at birth)
• There is a 10% chance of the baby having a bowel blockage at birth that will require surgery
• There is a high incidence of issues such as thyroid disease, diabetes and epilepsy. However, as these conditions are treatable, most people with DS lead reasonably healthy lives.
• The average life span in 1983 was 25.  Today it is over 60.

There are:

• Over 400,000 people with DS living in the United States alone
• Approximately 35, 000 people in Canada with Down syndrome

 
People with Down syndrome:

• Attend school (even post-secondary)
• Participate in the major decisions that affect their lives 
• Contribute to society in meaningful and productive ways
• Flourish with a stimulating home environment, enriched educational programs, positive family support and good health care.

(Statistics courtesy of The Canadian Down Syndrome Society, the National Down Syndrome Society and the National Association for Down Syndrome.)

Heal Thyself

People with Down syndrome and their families will deal with many types of therapies in their lives;  Occupational, Physical and Recreational are only a few of the many specialists that will be called into play during Wyatt's lifetime.  Most people when the hear "therapy" think of the psychological type;  that will play a role as well.  During our blogging-extravaganza for Down Syndrome Awareness Month I will be using Thursdays to talk about the different therapies that have helped us and our son.

For our first Therapy Thursday, I figured it would be best if I mentioned our most effective therapy yet and the one that has helped me the most:  this blog.

I am a Psychiatric Nurse... I work in the Mental Health Unit in the ER of a very busy hospital.  There is only one of us on at a time. I am used to seeing people on the worst day of their lives;  I swoop in,  provide support and comfort and then swoop out again.  I shine lights into dark corners, which is not always a welcome thing.  Sometimes I have to restrain people and medicate them against their will.  Sometimes I get hurt.  It's rarely a happy place.

To combat the stress, I have my little hobbies.  I garden.  I take photographs.  I also have a sense of humour that is so dark I can barely see most days.  At some point around 2004, I started my first blog.  Really it was just an excuse to show family some of my photos and tell their stories.  As time went on, I figured out that writing was an excellent way for me to organize my very busy brain.  Sitting down and typing things out often helps me realize what is important, what is most pressing and helps me get a better grasp on any feelings I am having.  It certainly helped me cope with the nightmare of my son's birth.  As time went on, I found myself writing more and more, especially when I had a big decision or a life changing event. 

Down Wit Dat started elsewhere, as a series of updates for my friends and family. After the shock of Wyatt's diagnosis, I had to gain some perspective and fast.  After all, I still had two babies in my belly to finish nurturing.  I had to remain calm when all I wanted to do was fall apart.  I also had umpteen people to tell and since the information was so detailed, I didn't want to risk playing broken telephone.  So, at the risk of annoying old friends and acquaintances, I posted the details to social media.

The response was overwhelming.  I had more support than I ever imagined.  People that I hadn't talked to in eons were now offering whatever they could to help, even if it was a few words of encouragement and hope.  As I plodded through the last month of pregnancy and all the appointments within it, I shared it with others (mainly at their insistence). 

At the same time, I was searching for Down syndrome resources that met my needs.  It was a hard search.  Although my "Medela Moments" guaranteed that I'd be on the computer every four hours, I didn't always have it in me to look up details and search for twins that were like mine.  I was frustrated and ran into so many brick walls.  Over time however, I started to compile a list of resources that I found helpful, links that I found useful and actually learned something from.  Some time around May, I was talking to my husband Sean and he suggested that I start a blog for my Down syndrome related entries.  I hummed and hawed a bit, wondering if I would have the time when he added quietly "you could really help some people".

I thought about that one for a while. 

After Wyatt was born, after we got the official diagnosis of Down syndrome, I felt like I was stumbling around in the dark.  I could not imagine what it would be like to not have a medical background and find this out about your child.  But, so many people do.  I thought I'd put our somewhat unique twin story out there in cyberspace as a beacon and maybe I would find other parents in our position.  Maybe I would help a few people in turn with the resources that I would provide.

My little signal fire quickly caught on and I unwittingly set the forest ablaze.

What I believe I have done and what I wish to continue to do is to spread awareness and education about Down syndrome.  By sharing our story I hope to increase acceptance and inclusion through familiarity.  Down syndrome is not the bogeyman.  It is not the end of the world.  It can be very beautiful, you just have to know where to look, beyond old stereotypes.

If I reach one individual, I have already made Wyatt's journey that much easier.    For that individual will reach at least one other and that person's acceptance can improve the world for someone else with DS.  There is no cure to find or monument to build.  All I ask anyone to do is to open your mind and your heart.  Support inclusion.  Educate yourself and your children.  Understand how using a word to mean one thing when it originally meant another, hurts a group of people that truly don't deserve it.

Writing this blog has helped me become a more open and honest person, which can only serve to make me a better parent to all my kids as I, in turn, become a better person overall.  I have learned much and connected with so many, including the parents of twins that I set out to find so long ago.  It has taught me humility and helped us through a very difficult time.  It has become a conduit for information, awareness and support;  one that flows both ways. I hope to continue to share with you our lives with Down syndrome, to further my education and to foster respect for an often marginalized group of marvelous people.  One of which I am lucky enough to call "son".

Wednesday with Wyatt

Hello World!  (7+ mos)

This post should really be called "The Adventures of Wyatt and Zoe" or "Adventures in Twindom" or something, but since this is supposed to be"Wyatt Wednesday", I should at least try to keep the theme going for the first week. 

Our little people are growing up at an alarming rate.  At almost 8 months old (6 weeks corrected), Zoe is learning to crawl.  She has been army crawling/creeping/pulling herself along the wood floor for a few weeks now.  Last week she started rocking.  Then she would rock on her knees.  Now, using a combination of creeping, crawling, rolling and sliding she can get just about anywhere she wants.  Fast.  Which is frightening.  On the other hand, she is keeping the floors pretty clean and dust free so that is one less thing to worry about.  She has also been able to stand holding on to our fingers for over a month, but has yet to master sitting up.  The gap between them is even more evident now as Wyatt is still working on rolling over and rolling back (as opposed to rolling onto his tummy, looking around/playing for a while, getting tired and then just deciding to have a nap where he is).  I have a feeling that this skill will be just like all the others:  nothing for a long time and then poof!  Sudden mastery.


I need a nap

Mealtimes are another adventure.  Both are doing well with solid food.  In fact, Wyatt is outshining his sister in the eating department.  Although he eats less (she has a voracious appetite!), he has responded well to the sideways spoon technique and eats like a pro now. There is very little "food shaving" or retrieval off of his face.  Zoe still tries to eat the spoon or slurp the food off of it.  She will also dive for the bowl and try and stick her whole head in if I am not careful.  I feed them both from the same bowl and spoon just to keep it easy (I can hear my Infection control peeps cringing at that one, but they already share each others germs anyway).  If I take too long giving Wyatt his spoonful, she will wipe what is on her face on the side of her chair and then lick it off.  She is nothing if not resourceful.   So far, their gastronomical repertoire includes (not in order):  rice cereal, oats, barley, bananas, pears, carrots, sweet potatoes peas and as of yesterday, squash.

They lull you into a false sense of security with their cuteness...

It's almost impossible to photograph them together now, unless they are asleep or engrossed in something.  One wants to go one way while the other does something else. 

There is never a dull moment around the place. If one isn't trying to talk up a storm, the other is (or they are intently watching their big brother give a dissertation on whatever he is about right then).  Wyatt is smiling more spontaneously and laughing more easily these days so he just a little joy to be around.  It's almost if his whole being lights up as his eyes crinkle and he erupts into his face splitting smile.  Regardless of what is going on, they are the perfect antidote for a rough day at work.  Two giggling babies can cure just about anything, I am convinced.

Then, Zoe Attacks!