Therapy Thursday: Speech and Language, Part 1 (31 for 21, Day 18)

The development of speech and language is important for many reasons, including the formation of both cognitive and social skills.  To children with Down syndrome, early interventions in this area are very important.  Cognitively this is important as:

• Increased vocabulary translates to increased understanding of the environment
• Using language increases thinking and reasoning abilities

Whereas socially, language:

• Gives the ability to navigate through world
• Helps control behaviour (by being able to express thoughts, feelings and desires)

The delays with Down syndrome are not universal;  not only do they vary in severity between individuals, but they also occur only in certain developmental areas and not others.  In regards to both speech and language, this area is fragmented into some skills being strengths and others 'weaknesses'.


Strengths

• Social development
• Social Understanding
• Communication (non-verbal, gesturing) 
• Visual short term memory 
• Visual-spacial processing
• Perception
• Socialization
• Development of daily living skills

Weaknesses:

• Development of spoken language (phonetics, syntax)
• Problems with speech (planning, articulation, phonology)
• Delayed acquisition of vocabulary (which is understood much before it is used) in early years.  (This becomes a strength however, by the teenage years)

'Receptive language', that is, the language that is understood, is much more developed than 'expressive language', or the language that is able to be spoken.

There are a variety of reasons that the development of speech and language are impacted by Trisomy 21.  They include:

• Impairments of brain functioning which impact the phonological loop of working memory
• Hearing deficits (including conductive, sensorineural)
• Oral-motor difficulties (which will impact speech-sounds and word production), found with structural, muscular or innervation differences.
• Vocabulary delays

[Next week:  Strategies for early intervention]

Buckley SJ, Le Prèvost P. Speech and language therapy for children with Down syndrome. Down Syndrome News and Update. 2002;2(2);70-76.

Martin, Gary E., Jessica Klusek, Bruno Estigarribia, and Joanne E. Roberts. "Language Characteristics of Individuals with Down Syndrome." Topics in Language Disorders 29.2 (2009): 112-32. Web.

Moment to Moment

"The ability to be in the present moment is a major component of mental wellness." 

--Abraham Maslow

Many people aspire to "live in the moment".  In today's world it has become cliché.  In Team Logan's world, this is our reality; we live in a series of moments, strung together like beads.  There are many reasons we do this; we do this for happiness, we do this for survival.  We do this out of a need for stability, even for a need of self-actualization. Most of the time it just boils down to 'because we have to'.  There is always a lot going on which makes planning and projecting almost impossible in some ways.  The past few weeks have contained some very significant moments.  Some are happier than others.  Many, especially those from work, are best forgotten all together.   There are the game changers too... those are the ones that we have learned truly matter.  We have learned to parse through all our moments and live in the ones that mean the most.  It's not about hiding or being in denial;  it's about staying focused and enjoying ourselves as much as possible.

A very significant moment occurred a week ago Thursday.  That morning, I found myself once more staring at fish.

Unlike the last time that I found myself tranq'ed by this particular tank, my daughter was buzzing around the room, occasionally stopping to gaze up at the waving tails within.  Her twin, my son Wyatt --- the reason we were here --- was perched on my knee.  I bounced him absentmindedly as he watched his sisters antics and grasped my fingers with his chubby fists.  The bubbling of the aerator was soothing;  once more I found myself falling into a trance when we were called into the cardiologist's office.

The uncertainty of Wyatt's heart has been looming over us for so long.  Like the Sword of Damocles, it hung in the balance on the barest of horse hairs .  So far, so good:  no CHF;  no meds;  no cyanosis.  No coughing due to fluid in his lungs.  No infections outside of the two colds the kids have endured.  No antibiotic use outside the NICU.  We've been lulled into a sense of comfort by our lives, we've tricked ourselves to not see it.  Occasionally, we look up and remember.  Sometimes I can almost feel it's keenness whisper across the back of my neck.  Whether we want to admit it or not, we are "cardiac parents".  Our son would be farther along in his development if he didn't tire so easily.  This day we will get answers.   We find out if we're continuing along, or if we're steeling ourselves and actively planning for his surgery and subsequent recovery.  There is a lot hinging on the next hour or so, ranging from the usage of accumulated vacation time to Christmas plans to our future in general.

It's a familiar place, this office.  I like the doctor very much.  His wife is also lovely and works as his sonographer.  Both are very highly regarded in their field.  However, my stomach is in knots and my son can feel it.  He is not himself today.  Although a little tired, he should still be more outgoing, friendlier.  Even when exhausted he waves at strangers and smiles toothy grins at old ladies in the supermarket.  Today he is in "Michigan J. Frog" mode.  Somber, half gazing around him, shoulders slumped.  Looking every inch the stereotypical archetype of Down syndrome.  I too am going through the motions as I robotically move about this appointment.  Wyatt is weighed and measured:  10kg, 70 cm (22lbs, 27.5in).  He's a little heavier in the few weeks since the visit to the pediatrician.  We go on to consult with his physician. 

History is gathered, Wyatt is assessed.  We return briefly to the waiting room before being called in for his echocardiogram.  For the first time here, Wyatt is sedated, given a tiny drop of midazolam in some chocolate milk.  As it takes effect, he becomes slower and looks drunk.  He stayed awake through the entire procedure, calmly gazing around and occasionally focusing on the Dora the explorer tape the sonographer had popped into the overhead TV.  We went back to the waiting room one more time, before I was called in to see the results.

As always, the cardiologist played the recording for me.  In real time, I watched my son's tiny heart as it beat within his chest.  The ventricular aspect is almost indistinguishable at this point;  to my untrained eyes it looks like a simple narrowing in the septum.  Two valves opened and closed with each beat;  above which the atrial septum was distinctly absent.  The beat was strong, regular, steadfast.  The back flow through the valve highlighted in colour.  "A few stitches" would ease this problem, nothing more.  I nodded, smiled appropriately, waiting and attuning myself to his every gesture, his every nuance so that I would not miss or mistake the information that was coming:

Pre-op appointment in 8 months.  Surgery, most likely within a year.

It is not bad news, it is not good news.  It is news that allows us to breathe again.  To plan.  To have some kind of idea what the next little while is going to look like.  It may seem like an incidental but there are so many things at stake.  Vacation time can now be planned and the current accounts that were held back "just in case", used for their intended purpose (and alleviate my current level of exhaustion).  Anniversaries, birthdays, Thanksgiving, Hallowe'en... these events are allowed to exist again.  Although their exile was self-created, it is impossible to imagine the future while that blade could fall any minute.   It's still there, but is supported by much stronger stuff.  We have a plan. We can do this.  This was an important moment;  this is one of the moments that allow us to live.

A few days before our trip to the doctor, we were eating dinner in front of the TV and Zoe was doing her best to cruise for tidbits.  The night before had been complete hell for both her and us as she was awake and screaming a great deal of it.  She has quite a few teeth coming in at once and I have no doubt that her mouth is terribly sore.  So much so that her appetite has decreased overall and she is more apt to eat soft squishy things and drink her milk.  I'm not adverse to giving the kids food off my plate either as I want them to eat and to experience different flavours and textures.  So, she was travelling back and forth between Sean and I and taking bites of our pizza.  At one point I made her use her sign for "more" and half jokingly said "say please".  I didn't get my please, but what I got was even cooler.

She said "Mama!".

I have been almost torturing her for months with "Mumumum".  My eldest son did not call me "Mum" until he was much older.  He was speaking in full sentences by the time I actually got a "Mama" out of him;  up until that point he had called me "Lady".  Zoe's "Mama" was typical of her;  sudden, it caught me off guard and was accompanied by a grin that would lead you to believe that she could do this for months but just didn't feel like it.  I tried not to freak out but still scooped her up and danced around the living room a bit while covering her with kisses.  It was awesome.  All the kids joined in the fun as Wyatt screeched and giggled on the floor nearby while Quinn shouted "woo hoo!".  Truly a banner moment.  She has been doing it sporadically since then, but she is aware that it has impact, the little minx.

Nine days later, the babies and I were in the kitchen as I was feeding them dinner, while Sean prepared ours. Wyatt was across from me in his high chair and both babies were babbling away in between courses.  At one point he said "um um um" and I smiled at him and said (like I had a million times before) "say Mama". 

So he did.

Not only did he say "Mum mum" but he held up his spread hand and tapped his thumb to his chin, making the sign for mother as well.  Suddenly, things got pretty blurry and I was lightheaded as I choked back the scream of delight that would surely have scared the daylights out of him.  As it was, I still pounded my feet on the floor and a few tears rolled down my face as I squeaked "He said Mum mum!  He said it!  AND THE SIGN!"  I covered my little guy in kisses as I had his sister;  he just laughed at me and reached for his dessert.

These are the moments that you live for as a parent;  as a special needs parent, doubly so.  We have no room for complacency on Team Logan; each new feat is celebrated to the max, each new skill rewarded.  All the sleepless nights, all the fatigue, all the hours of therapy, all the pain is gone in an instant and replaced instead with a supreme joy that I doubt I could explain fully.  Imagine a hundred pipe organs exploding into fanfare while fireworks rocket overhead and you will not even be close.  These are the moments that make everything worthwhile.  These are the moments that make you feel alive.

We will have more moments of note in the near future.  Our eldest starts Grade 1 on Tuesday.  We will have new words, new signs, new methods of locomotion and expression.  There will be more teeth, more texture and more variety to meals. There will also be the sleepless nights, frustration and tears... some of which might actually be from the children. 

What a Long, Strange Trip it's Been

The last little while has been a complete blur of appointments and late nights.  Copious amounts of carbs have been consumed (and cheese, most often together).  Much sleep has been lost or interrupted.  Tempers have been a bit short on all accounts, including both of us, the kids and the people that we have had to interact with.  At various points, this past week has seemed to never want to end.

It started the day after the birthday party (Monday, April 23rd).  We had an OT visit where several things were looked at in detail.  One, how well Wyatt's mobility has come along in the last few weeks.  Since the last update, he can make his way across the floor, half dragging, half commando crawling.  We have not seen him sit up (by himself) since the party, however he has come very close several times.  It's probably like the rolling thing;  we won't actually see him doing it for a while.  We'll just look over and assume he just teleported, or in this case, was magically repositioned while we weren't looking.  We are trying to get him to understand what his legs and feet are for (other than additional hands);  we have a variety of sitting/kneeling/bent over positions for him to practice and to get used to putting some weight on his legs.  So far, not much, but we are trying.  Point of interest number two:  how far his eating skills have come in the same amount of time.  We talked about finding a good time for another speech-language assessment before the OT left.  We should have an appointment by our next visit.

The following day (April 24th) meant an appointment with the pediatrician for both Wyatt and Zoe.  I don't know about you, but a snotty receptionist can really set me on edge.  This one in particular seems to have majored in Passive-Aggressive with a minor in Bitch.  The day before, she had telephoned to confirm our appointment.  During that call, no actual appointment time was mentioned when she spoke to my husband; I assumed I had the correct time listed in my phone.  You will imagine my surprise as I blustered into the office, 15 minutes early (for a change!) only to be met with cold silence.  Once I had dug out our health cards and settled my daughter (who had just had what could only be a harrowing stranger experience in the elevator with a kindly old man who told us all about his twins), I turned to face the receptionist.  She barely made eye contact, quickly scooped up the cards and said quietly "I just called your house."  "Oh?"  I answered, confused.  "What's wrong?"  "You're half an hour LATE!" she informed me in clipped tones, barely containing her hostility.  I whipped out my phone to check the times and surprise, there was no match.  For some reason, our appointment had been moved to 9:45.   My husband (to the receptionist's surprise) walked in a minute later and reminded her that she did not mention a time on the phone and therefore, did not confirm the appointment properly. Mistakes had been made all around.  There was another period of awkward silence, where I prepared to get comfortable in the waiting room as I figured she would now make us wait.  A few minutes later, she approached the babies with artificial sweetness and told us that it was time to come in.  We maneuvered our beast of a stroller through the narrow hallways into the exam room and began to get them undressed for their weigh in.

Aside from that little bump, the rest of the appointment went well.  There was no one else in the office at that time, so the doctor was able to see us.  Zoe now weighs 9.14 kg (20.1 lbs) while her now little brother Wyatt weighs 7.95kg (17.49 lbs).  They are both small for their age, at 70cm (27.6 inches) and 67cm (26.3 inches), respectfully.  Their big brother Quinn was 25 inches at birth, just to offer up a little comparison.  Both rank somewhere in the 5th percentile for height on their respective charts (although Zoe has crept up a bit in the weight department).  Numbers aside, both are happy, healthy infants who are doing well in their own way.  Wyatt attempted to sit up while we were there, which made the doc happy.  Zoe wasn't too keen on walking barefoot on a cold floor, so she did not get to show off her running prowess.  The doc made sure that we got an actual appointment card this time and we took our leave.

Wednesday (April 25th) was the ENT.  Sean took Wyatt by himself, as it was an early morning appointment and it interfered with Quinn's schoolbus time.  I was expecting the boys home shortly after 10 but they didn't arrive until 11:30 or so.  I was a bit confused at first, but Sean explained that our bad doctor karma from the day before had spilled over into this appointment as well.  Although they were on time, the ENT was not.  After sitting for almost an hour, the doc wandered in the front door, ignored what was now a packed waiting room, went straight to the back and had the first patient sent in. It was apparent that he was in a shitty mood by the time Wyatt's name was called;  he then proceeded to take it out on Sean.  We haven't been exactly diligent with remembering to put drops of mineral oil in Wyatt's ears (to keep the wax loosened) and the doc let Sean know a little more brusquely than necessary that this wasn't cool.  In fact, his tone suggested negligence.  He even went so far as to accuse Sean of using Q tips on him which, if you don't know, are a no-no with ears as they are self cleaning (Q tips just impact the wax).  Sean tried to explain how we never use Q tips and clean only the external ear and when that was completely ignored, he half-desperately threw in a "you know my wife is a nurse, right?"  for good measure.  This all had very little effect on Dr. Grumpypants who continued by demanding to know when Wyatt had a specific hearing test done.  We do keep on top of all his hearing appointments, but lets face it, we have no idea what exact tests are taking place, just what the results are at the end.  This was not an acceptable answer either and prompted him to place an angry call to the audiologist's office. After extracting the gunk from Wyatt's ears (which, wasn't too bad at all), the boys were then sent back to the waiting room to wait.  During that stay, Sean overheard the secretary talking to the audiologist's office and learned that the specific test that the ENT was peaking about was not done at the last appointment... as it had been done at the one before.  This fact would have been apparent if he had bothered to read Wyatt's chart. A more sheepish ENT called them both back in to let them know the results of the hearing test and that based on that information and the examination that he had just performed, Wy's ears are just fine, thanks.  See you in 6 months.

Flash forward through a whirlwind of my 6 year old's actual birthday (April 26th), one twelve and one 16 hour night shift (April 28th and 29th).  It was now Tuesday of the next week (May 1st) and time for Wyatt's sleep study at Sick Kids.  Prior to this, we had to fill out a sleeping/eating log for 10 days;  it was only through some miracle that I remembered to yell at someone at the last minute to grab it as we were going out the door.  Even for overnight, I had to take a lot of stuff for me and one baby.  Jammies, diapers, wipes, cream, pillows, emergency bottle, Tylenol, toys, 'whoosh whoosh bear', the stroller to push all our stuff around in... plus I brought the laptop "just in case".  Although it turns out that there is a complementary TV in the room (and free WiFi!), I wanted the ability to play a movie or write/fool around on the internet if I couldn't sleep.  I figured that, much like sex in the champagne room, there was no sleep in the sleep study.  I had no idea how right I was going to be. 

It was a good thing that we arrived early as it gave me a little extra time to get lost.  It's a pretty straightforward hospital in most respects, but you have to trust me, getting lost is a specialty of mine.  Sean claims that I have a compass in my head like everyone else, but unlike everyone else, mine is broken and just spins.  I do make up for this with my map skills...  To prove this point, seconds after I discovered a wall map, I found the Atrium and the elevators that I needed.. 

Sick Kids is a fabulous place... I have mentioned this before.  The main elevators are a sunny yellow and the whole place looks like it was designed by a toymaker.  However, if you have vertigo like me, it's a little unnerving getting from the central elevator hall to one of the quads. 

You can see the yellow elevators on the left.  Photo courtesy of skate_simmo

We were greeted by our Tech who assured me that they do sleep studies on babies all the time. In fact, last week he had three babies there at the same time (the lab has four beds).  We were shown to our room and I set everything up while Wyatt got to play in his crib a bit and stretch out after the car ride.  I realized somewhere during my exploration of the room that psychiatry has ruined me:  the entire time I was setting up, all I could think of was how unsafe the room was.  Including the closet, which was just the right depth and had a bar in there that someone (small) could hang themselves with.

Our room.  My daybed is in the back there

My bed.  I've slept on a lot worse, trust me.  For my convenience, I'm right next to the hanging closet.

Baby logistics is another specialty of mine.  Knowing that I had to feed him for him to go to sleep and assuming that there was a tangle of wires in his future, I had to work out how we were going to do this.  Our Tech and I talked about it and he would come back to wire my son up when he started to look a little sleepy.  I tried to make Wy feel as comfortable as possible;  he had a few toys there, a few homey smells and I set up the laptop and streamed some music for him (they have a radio on all night for noise and company).  He started to look a little droopy and I called our dude in to (literally!) hook us up.

For those that don't know, during a sleep study you are monitored for quite a few things.  Your heart rate, your breathing and your oxygen/CO2 levels are important.  They also monitor brain waves so that they know how asleep you really are. Finally, they monitor movement, to see how restless you are.  Basically this translates to an ECG, an EEG and an oximeter.  There was also a camera in the room and an observation window if needed.

In total, there were about 20 'leads' or wires about his little person.  Two on each of his legs, four on his chest and the rest on his head.  There was also a O2 sat (oximeter) on his toe an a CO2 monitor on his chest (that was relocated to his back in the middle of the night).  He looked like a little Borg.

Resistince is futile.  (He's not crying BTW, just mid-babble)

He got a little Teletubby hat made out of some Surgifix (stretchy tube mesh that they put over IV's and lines and things) to keep the wires on his head.  The Tech put a towel over the lead box on the bed hoping that Wyatt would forget it was there and I was given the OK to feed him.  I set up shop beside the bed, gingerly pulling on the wires all the while hoping there was enough slack.

He wouldn't sleep for love nor money.

Usually he falls asleep during his bedtime "snack".  No dice.  I whipped out a bottle of homogenized and heated it up for him.  Nope.  At one point I  turned on the end of the hockey game, hoping he'd get tired (he watches a lot of hockey with Daddy if he can't sleep at night).  We called Daddy, we sang songs, we rocked, we burped, we got Tylenol.  Finally, about 10:30 he went to sleep in my arms.  I carefully tucked the towel underneath him so that he would not immediately roll on the wires (or catch them in his sleep), put up the side rail and tiptoed to my cot.  I didn't realize how tired I really was until my eyes closed while I was typing on the laptop.  I shut everything down, pulled the blanket over me and drifted off. 

At 2 am I woke to him stirring and was at his side a minute later when he started to cry.  Once he is down, Wyatt does not wake up in the middle of the night unless he is sick.  What I found when I got there was pretty much heart stopping:  all the wires were wrapped around his neck.  I sat my crying boy up and started to gently un-garrote him;  he looked like a kitten tangled in a ball of yarn.  At one point I had to go get the Tech for help as I was afraid of dislodging everything.  It took a bit, but we were able to free him from his wire-y prison. 

I am sooo tired!  I also HATE this hat!

For his trouble, he also ended up with a nasal cannula, which he also hated.

This thing is 'teh suck'.

You can bet that he was wide awake after that, so I put the radio on over the phone and held and rocked him.  He kept trying to pull out the cannula and that one purple wire in the photo above, so the only thing I could do was to put him on my left shoulder, tuck his one hand into my armpit, hold him (under the wires) under his bum and hold his other arm down with my right arm as it held him over the wires.  And rock.  Which I did...  For a solid hour.  I thought he was asleep at one point and tried to put him down but it didn't work as he was crying and rolling and threatening to get tangled up all over again.  Finally, he was a sleeping rag doll again around 3:15 and I tiptoed back to my cot.  I had a hard time settling as well;  I think I got back to sleep around 4, although I woke up several times to unfamiliar hospital sounds.

My eyes opened again at 10 minutes to 6, so with a sigh, I started quietly packing up the room.  The test ended at 6 and our Tech was there promptly to unhook Wyatt from his torment.  We turned all the lights on and found my little lamb sound asleep.  I hated to wake him up but it was time to go.

Wakey, wakey Wyatt.

The conductive jelly that was in his hair, despite the reassurance that it was water soluble, would NOT come out with warm water and a cloth.  I got him dressed, packed up the room, stripped the beds and was out by 6:30.  I managed to get lost a completely new way before (gratefully) finding the Whaaambulance and my family waiting for me outside the Elm St. entrance.  We rocketed home in the fog and by afternoon, all 5 of us went down for a nap.  After a nice bath, Wyatt also had 95% of the tape and goo out of his hair.

My week did not end there as I had a 12 hour night shift the next night (May 2nd).  I also start a new 4 day tour tomorrow (May 5th) but the kids have settled back into their routine.  I won't know the results of the study for a while.  In fact, I'm not sure how I will find out exactly;  we will probably hear from one of his doctors and/or get a phone call or a letter.  I do know that while I worked the night away, everyone slept very well at home, in their own bed. 

It's been a busy, crazy, cranky and tiring spell for Team Logan, but we have come out the other side of it.  I know I will be happy to see Wednesday morning (May 9th), when I start my next run of 5 days off. One of the good things about blitzing through a bunch of appointments is getting them all over with... which we have, until the next go around in a few months time.  In the meantime, we won't be idle waiting for results.  Instead, life will go on as it does for my raucous household.  Full of laughter, life and love.

Now that's worth the price of a few crappy nights sleep, isn't it?

The Working Mom Blues

Being a working Mom ensures many things.  For example, it forces me to leave the house.  It also guarantees that I remember to shower, brush my teeth, change my clothes and run a comb through my rebellious hair.  I get to talk to more adults, which is also a bonus, although most of them have some kind of mental illness (or are really not very grown up at all).  Still, it keeps my brain from turning to complete mush from the constant noise or too many episodes of The Price Is Right.

It also makes sure that I miss out on a lot of things too.  There is an old Nursing chestnut that says something along the lines that you get to spend all the holidays with your friends... at work.  Shift work makes it difficult to schedule things like appointments, which, in a house that has Specialists up the wazoo, means that I don't always get to go.  We also have three kids with commitments at various points in the day so the scheduling tends to get a little interesting.

Last week Sean took Wyatt to his first speech assessment.  According to both my husband and the reports that came home, Wyatt is doing very well in this area.  To be honest, I wasn't sure what to expect.  Other than making different sounds, what could they evaluate?

Officially, the exam is called an "Early Response to Learning Intervention (ERLI)" and is given through ErinOaks.  In the course of the hour or so that they spent there, Wyatt was evaluated in a variety of areas.  Each area was graded as "No concerns were observed or reported in these areas", "Difficulties were identified in these areas" and "Continue to check progress in these areas".  Thankfully, notes were given as well, so that we could understand exactly how he was meeting or not meeting each of the assessment criteria.  Wyatt was assessed in the following: (note, this is taken directly from ErinOaks Kids ERLI form)

• Social Communication [The child's ability to communicate and connect with others, including greeting, making eye contact to communicate, sharing interest and enjoyment]
• Play Skills [Play skills an communication development are closely related]
• Understanding Language [The child's ability to understand language, including following directions, responding to questions, understanding words and concepts]
• Expressive Language [The child's ability to express his or her wants, needs, ideas and feeling s in a variety of ways including gestures, sounds and words]
• Speech/Articulation [The ability to pronounce speech sounds and coordinate speech movements]
• Stuttering
• Behaviour
• Other [e.g. feeding/swallowing, motor skills]

Wyatt rated "No concerns" in his social communication, which was no surprise to anyone here.  He is very vocal.  There were also no concerns with stuttering or his behaviour as well.  I was happy to see that there were no "Difficulties" noted;  most of the above was rated as "Continue to check progress".  The therapist provided a list of behaviours/activities/actions that she observed Wyatt performing that we are to continue to build on.  For example, under play skills, she indicated that he should continue to explore toys and working on being able to bang them together.  Under "Understanding Language", anticipating daily routines and attaching meaning to familiar terms were listed.  What do these have to do with speech you may ask?

Language acquisition is a major part of our development.  In order to communicate, you need names for things.  We have words for thinking, remembering, knowledge, reasoning and communication.  By attaching meaning to a specific routine for example, such as "lunch", Wyatt will learn an important association. Children with Down Syndrome are visual learners, so attaching sounds (words) to a witnessed action is also an important part of this.  Hopefully, at some point, Wyatt will be able to hear "Where's Daddy?" and turn his head to find him.  To typical children, this is a very easy thing to learn.  Zoe has been able to do this for months.  For those with DS, it takes a lot longer as they have to develop each connection individually.  He has to connect Sean's "Sean-ness" with the sound of "Daddy" (which is tricky for sight learners;  he learns my mouth shape but the sounds I'm making might as well be an ambient radio on in the background for all the relevance they hold).  Wyatt has to develop the ability to think of the word "Daddy" when he sees Sean.  He also has to further his object permanence and his awareness of himself and other beings in space and time.  Our ability to learn language also affects our ability to develop memories;  with that in mind, he has to have the words "Daddy" and "Where" in his repertoire before he can start remembering where Daddy actually is.  Finally, he has to connect those words and a memory with an action of his own so that he can turn his head and look for "Daddy"... which, in itself will take longer due to the slow reactions of his muscles. 

With my absence most of the time, it will be Daddy that Wyatt remembers more.  I will say that there has been great improvement since my return to work;  now, when I get home Wyatt greets me with the biggest smile and an enthusiastic giggle-shout.  A few months ago, it would take time for him to warm up to me after a prolonged absence.  In a little selfish sense, this stings a little, however in the bigger picture as long as he is making these connections, it doesn't matter who they are with. 

There are days that I feel that I am missing out, it is true.  However, I stop and remind myself that I am fortunate to have my husband at home and that at least one of us is sharing all the major moments with the kids.  Quinn spent a lot of time in day care and as a result we missed a lot of "firsts"; that won't be the case here.  Not being home all the time makes what time we do have together that much sweeter and I can savour it that much more.  After four 12 hour shifts, his laughter is music for my soul.  He seems to smile with his whole being; he is almost radiant as he chases away any lingering blues that I might have.   As he continues to further his skills and starts to sprout teeth, we will be closer to that elusive "Mama".  Until then, everything he does gives us plenty to talk about.


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Speak to Me

Speech can be very difficult for those with Down syndrome.  Due to delays in memory and aural learning, as well as co-ordination issues due to lack of muscle tone and control, speech  develops very late compared to "typically developing" peers.  Most actual speech therapies start after the first year (about 18 months of age), which begs the question, what can be done in the mean time?

One of the areas that you can work on with your infant is developing the face and mouth.  These are the same exercises that one would use to strengthen the facial/mouth muscles and increase sensation in preparation for eating.  These techniques are courtesy of ICDSP:

Facial massage:  Using two fingers or your thumbs, stroke the baby's face from the upper cheek close to the ears down to the corners of the mouth.  Then, stroke down from under the nostrils to the top lip.  (Do this 3 or 4 times a day before eating)

Palatal massage:  Insert a clean finger into the baby's mouth and stroke the roof of the mouth (the palate) from the middle to the side, stopping at the gum line.  Return to middle and continue to other side; repeat 3-4 times prior to every feed

Gum massage:  Trace along the gums with firm pressure from the front to the back on each side, top and bottom.  Do this 2 to 3 times, twice a day.

Chewing/Toy Mouthing:  introduce and encourage the child to use a variety of teething rings, soft toys and feeding utensils;  introduce horizontally and to the side to encourage biting of the toy.  Do this 3 to 4 times, each side.

Along with these techniques is the single most effective tool to strengthen the oral muscles:  breastfeeding.  As it provides more resistance than bottle feeding, it encourages the development of the muscles of the lips, cheek and tongue and enhances the coordination of these with breathing.  Soother use is also encouraged for this reason.

Another area that can be worked on is sound recognition.  As children with Down syndrome are primarily visual learners, the goal is to help the infant link sound with facial expression.  When the child is alert and relaxed, find a comfortable position that places both of you at eye level.  Remove any background distractions such as a radio or the TV and make eye contact with your child as you make sounds.  As you make each sound, monitor your baby for any reaction.  Encourage repetition by repeating any sounds that he or she makes.  You can make non-speech sounds (which include clicks, pops, "raspberries", etc) or speech sounds (which are repeated consonants or vowels or combination).    Make exaggerated examples slowly and clearly to help the baby hear and react to the sound.¹

Talking, singing and playing with your baby face to face will also encourage the little one to pay attention to sound. Ensuring optimum hearing through frequent assessment will also help them acquire language. 

Although statistically, many children with Down syndrome do not learn to talk until much later than their typical peers, it is possible to help them prepare for this eventuality.  By encouraging strong facial muscles along with memory, speech and language skills, the child will be able to speak more clearly and have an increased vocabulary.  Which, is extremely important for those very first spoken words. 

I won't say "Mama" for a while yet, but it will be phenomenal when I do.

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1.  Courtesy of R. Grey, Speech-Language Pathologist at Trillium Health Centre: