Speech and Language, Part 2: Strategies for Early Intervention (31 for 21, Day 25)

According to all the experts, early intervention with Down syndrome is the key, especially in regards to speech and language development.  This can seem a bit daunting, however with the aid of an early intervention team, you can create the best environment possible in which your child can learn.

The following information is taken from Buckley and Le Prèvost's article Speech and Language therapy for children with Down syndrome (2002).  So far, it is the best one-stop source of information regarding early interventions with speech therapy that I have found. Listed by age group, it outlines the goal centered approach that is often used.

Preschool

Knowledgeable therapists who are up to date with the latest research materials are important to this age group.  As kids with DS tend to have issues with hearing, speech and memory issues it is important to focus on auditory discrimination, oral-motor skills, speech and language work. In the first year, home visits should occur at least monthly. if not more frequently.  When the child is over a year old, other methods can be employed, including groups sessions. Groups are particularly helpful as children tend to mimic each other.

Goals for the first year

• Create an environment that encourages communication, including understanding how speech and language develops and the specific needs of the child
• Provide support for feeding, including oral-motor activities
• Encourage various communication skills:  eye contact, turn taking, pointing, joint-referencing
• Improve auditory discrimination by targeting speech sounds, including those in the phonological loop and babbling.
• Encourage signs and gesturing to augment comprehension

Two Years of Age

• Continue to foster an optimum environment for communication
• Keep a record of speech sounds as work is continued to support hearing and speech sounds.
• Teach word comprehension through play:  games, objects, pictures and actions.  Keep a record of words spoken/signed
• Encourage constructions of two or three words through play and imitation
• Address any other issues (due to high incidence of ASD)

Three to five years of Age

• Continue to foster an optimum environment for communication
• Continue to target hearing/speech production; keep a record of speech sound and progress
• Teach vocabulary, grammar and syntax using play and visual aids such as books.
• Keep a record of vocabulary and comprehension.  
• Continue to address any other issues (such as ASD)

Primary School

It is ideal if children receive speech and language therapy in school.  Although individual children will vary greatly in skills, all will understand much more than they can produce.  As with the younger ages, therapists working with children with Down syndrome between 5 to 11 years of age should be knowledgeable re: current research, development, working memory, etc.  For this age group, they should also understand how reading supports the development of vocabulary, grammar, and clarity of speech, as well as the importance of auditory discrimination for speech sounds, phonics and working memory.

Goals

• Focus on speech, vocabulary, grammar and communication.  Keep detailed notes of progress
• Separate comprehension and production goals for vocabulary and grammar
• Goals for speech, such as articulation, phonology and intelligibility
• Assist teachers:  with incorporating speech/language goals into lesson plans and encouraging use of visual aids/reading to assist with language
• Assess oral-motor skills, such as feeding, chewing and drinking.
• Review goals with parents and teachers
• Continue to foster an optimum environment for communication, ensure all (including teachers) understand needs of child, goals set and why.
• Continue to address any other issues (such as ASD)

Methods for Goal Implementation

• Seen and assessed monthly at school.  All involved (teachers, parents, assistants) should have activities to include daily
• Activities to be created by speech/language therapist
• Additional weekly or monthly sessions with speech/language therapist to assess progress and change approach if necessary

Secondary School

Therapy should continue with this age group;  however age-appropriate modifications should be made to activities.  Skill level will vary, however comprehension will still outweigh the ability to express one's self.  Continue reinforcing that reading supports the development of vocabulary, grammar, and clarity of speech, as well as the importance of auditory discrimination for speech sounds, phonics and working memory.  Social skills, such as conversation may need to be addressed further.

Goals

• Focus on speech, vocabulary, grammar and communication.  Keep detailed notes of progress
• Separate comprehension and production goals for vocabulary and grammar
• Goals for speech, such as articulation, phonology and intelligibility
• Assist teachers:  with incorporating speech/language goals into lesson plans and encouraging use of visual aids/reading to assist with language
• Assess oral-motor skills, such as feeding, chewing and drinking.
• Review goals with parents, teachers and teenager
• Continue to foster an optimum environment for communication, ensure all (including teachers and teenager) understand needs of child, goals set and why.
• Continue to address any other issues (such as ASD)

 Methods for Goal Implementation

• Seen and assessed monthly at school.  All involved (teachers, parents, assistants) should have activities to include daily
• Activities to be created by speech/language therapist
• Additional weekly or monthly sessions with speech/language therapist to assess progress and change approach if necessary

 Adulthood

Studies have shown that therapy can continue to improve speech and language skills well into adulthood.  However, more resources are needed for this age range as they are generally not readily available

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

Therapy Thursday: All About the Crawl

Like any other parents, we are excited when our children reach their milestones.  Our son Wyatt, who has Down syndrome, is no exception.  However, with his cardiac issues and his prematurity, he has some added challenges that even his peers with Trisomy 21 do not.  At this time, at almost 20 months of age, he can expertly commando crawl, sit up on his own and has begun grasping the edge of things and attempting to peep over.  He is not pulling himself up, standing or creeping.  At times it can become frustrating and it begs the question:  is there something that we can do to "speed up" this process?  Right along side this comes the parental guilt:  are we doing the right things for our son?

There is a lot of literature out there about treadmill walking;  I will not deny that the research looks promising, especially with getting kids who are creeping (on their hands and knees) to the walking stage weeks earlier. As it turns out however, commando crawling is an extremely important stage of development that helps map and incorporate all the senses and should therefore be given as much attention as possible. 

When a child learns to crawl on their stomach, they:

• learn to focus their eyes on near objects
• discover the placement of their torso, legs and arms through tactile stimulation with the floor (develop proprioception - the awareness we have of our limbs as we move them)
• Use almost all of the major muscle groups
• Learn co-ordinated movement (especially 'cross pattern movement' of right leg, left arm then left leg, right arm)
• Learn muscle balance (the ability to steady one's self using their muscles, primarily those in the 'core')

Co-ordinated movement is very important as it is a skill that we use all our lives.  Developing 'cross pattern movement', that is the ability of simultaneously moving the right foot and left arm, then the left foot and right arm, is used in all forms of human movement, including walking.  During belly crawling, the arms, legs and torso receive sensory (tactile) information that helps the child improve their development of such movement.  Almost all the muscle groups are used and it is only by learning to alternate the flexion and extension of their joints that the child will crawl.  The more the muscles are used, the stronger they become and in turn, the stronger the crawling becomes.  It is in this way, the child develops their arms, legs and trunk;  in conditions such as Down syndrome where there is lower muscle tone and looser ligaments, this is a very important stage.

As mentioned previously, crawling utilizes tactile and proprioceptive receptors throughout the body.  The information received by these receptors during crawling comes simultaneously from both the right and left side of the body.  As the child becomes more adept at crawling and integrating this sensory information, they further the development their tactile senses and in turn continue to develop their muscle tone even further. As well, they develop muscle balance, learn to use utilize vestibular balance (balance that is monitored by the sensory system in the inner ear) and continue to develop their proprioception.  The more all of this is developed, the stronger the muscles and sensory connections become. 

Some children with Down syndrome may take even longer than their peers to progress from a commando crawl to a creep as they may require more input and time to make the necessary connections.  However, continued practice has shown to provide a strong foundation for future movement.  Wyatt is one of those children.  Allowing him to continue practicing his crawling and encouraging him to creep (along with his other exercises, such as weight bearing) will only strengthen his motor and sensory skills and give him the best possible practice for when he does begin to walk. 

Abdel Rahman, Samia A., and Afaf A M Shaheen. "Efficacy of Weight Bearing Exercises on Balance in Children with Down Syndrome." Egyptian Journal of Neurology, Psychiatry and Neurosurgery 41.1 (2010): 37-46. The Egyptian Journal of Neurology, Psychiatry and Neurosurgery. Web. <http://www.ejnpn.org/Default.aspx>.

Bruni, Maryanne. "Occupational Therapy and the Child with Down Syndrome." Down Syndrome: Health Issues. News and Information for Parents and Professionals. , 2001. Web. <http://www.ds-health.com>.

Doman, Robert J., Jr., and Ellen R. Doman. "Down Syndrome: The Importance of Crawling on the Stomach." The NACD Foundation 22.12 (2009): n. pag. The National Association for Child Development. Web. <http://nacd.org/index.php>

Winders, Patricia C. "Physical Therapy & Down Syndrome." National Down Syndrome Society. National Down Syndrome Society, Web. <http://www.ndss.org>

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Olympic Spirit

As much of the planet knows, we are smack dab in the middle of the Olympics.  My news feed has been awash daily with national pride, good natured ribbing and sadly, some not-so good natured politics.  My favourite posts so far are from the parents who are winning silver in their hair from the "sports" that their kids are reenacting in living rooms around the world.  We too have been affected by the spirit of the 30th Olympiad, but not in a way that you might think;  there have been all sorts of medal winning moments here as of late but you won't see any of them replayed on the news.

Last Monday we trekked to the pediatrician's office.  Fortunately for everyone involved, it wasn't a repeat of our previous trip.  We decided to be ahead of the game by confirming the appointment properly twice and arrived over 15 minutes ahead of schedule.  For our efforts, we were rewarded by getting in early;  the secretary mumbled bitchily about the people ahead of us being late, so our appointment time would be moved up.  (Sha-ZAM!)

Zoe, our little mighty mite, is now 10.06 kg (22 lbs) and her older brother Wyatt is 9.06kg (20lbs).  Zoe's weight for her (corrected) age scores her within the 50-75th percentile , while Wyatt is bang on at the 50th percentile for his corrected age on the Ds charts.  Their length has also shown improvement as Zoe, at 75 cm (30 inches) holds her ground at bang on the 25th percentile, while Wyatt has jumped up to the 25-50th percentile at 73 cm (29 inches).  That's great news as I was beginning to fear that they would be tiny forever. 

I found myself irked at a couple of questions that the pediatrician asked.  Such as "does he know his name?" I had to stop and count to ten at these moments and remind myself that she only sees him once every 3 months.  He has come so far since our last appointment that she has a lot of catching up to do.  As we went through the list of accomplishments and goals that we and our ICDSP worker have for him, the subject of the sleep study came up.  We did not receive any results of any kind after his ordeal study and to be honest, I was a little annoyed by it.  As it turned out, she did receive results (in June).  According to the report, Wyatt's apnea levels were within normal limits at all times.  However they did note that he was some snoring at various points, the cause of which was difficult to assess due to... [are you ready for it?]...  "loud parental snoring".  I think I laughed and quipped something about a family of large tonsils, but I could have quite nicely crawled under my chair and died of embarassment.  Did you see the pallet I had to sleep on?  Puh-leeze.  In any event, there are several things with this: 

1) Any higher pressure in his lungs is not due to sleep apnea.
2) He does not have sleep apnea so surgery is not going to be as scary. 
3) I'm betting they will move his surgery date up (due to the pressure being caused by other things).  

Finally, my favourite:
4)  Wyatt may not have sleep apnea, but I probably do. 

We've been chuckling about this for quite some time, despite my mortification.  Sean was more than happy to regale our ICDSP worker when she arrived Monday.  I was in and out with Quinn as we were in the garden staking up our tomato plants, but when not listening to Sean's stories of my snoring, she worked on several things with Wyatt.  He's had a little plateau as of late with the mobility, so I could almost hear the frustration in her voice as she said "He's so close to sitting up, he's got all the parts, he just needs to put it all together".  I agreed and then we discussed working on his ball rolling and sitting exercises.  

The very next day, Wyatt decided to take matters into his own hands.  Mid morning, Quinn looked over to find Wyatt sitting up in the corner.  Excitedly he pointed it out and we all clapped (including Wy, who instead of clapping, raises his hands and waves/Kermit the frog flaps yaaaaaaayyyy! ).  I didn't think much of it as he was right beside a lot of objects that he could have pulled/pushed himself up on.  Later on, in the middle of the floor, he did it again!  And again!  Four times in one day, twice witnessed!  It was amazing.  That was a gold medal performance if we had ever seen one.  It didn't stop there either: the next morning as the babies were exploring the living room, Wyatt was really straining to peek up over the edge of one of the toy baskets.  I casually remarked "Geez Wyatt, if you want to see what's in there, you should sit up!".

So he did.

He leveled his gaze at me, pushed backwards with his arms and pushed himself into a sit.  Then he grabbed what he was going after out of the basket.  It was phenomenal.

Wyatt decided to go for the triple play when he learned to roll the ball later on that same afternoon.  We were sitting with our legs in a V-shape, to allow the ball to roll between us.  Now, previous to this, we would start rolling a ball and Zoe would zip by and run off with it.  It would not matter what type of ball it was either;  large, rubber, tennis, O-ball, we have them all.  We'd start with one, she'd plop herself down in my lap, intercept the ball and be gone!  I'd look at Wy, take another ball out of the basket and roll that one to him.  He'd eventually hit it back to me and whoosh!  Here's Zoe again, going off in a different direction with a ball in each hand.  I thought initially "she's got both her hands full, now's our chance" and went for the third ball. Naturally, I was wrong and she, believing what we had was better, dropped one of the balls and went after the new one.  This would continue on until the basket was empty and she had a stash of balls over in the corner like some sort of obsessed sporting goods squirrel. It also wouldn't matter if I grabbed up one of the ones she'd already taken, as she'd take those back as well.  However, that particular afternoon, Quinn managed to keep her occupied for a few minutes.  We were using a ball with a rattle in it, so for the first bit, Wyatt would just pick it up and shake it.  Then he would rattle it a few times then push it towards me with the back of his hand.  Then he would just roll it towards me.  We were only playing for a short time, but it too was outstanding.  I tried to mix it up a bit with telling him to "shake it!" then "roll it", which he did, flawlessly.  Once again, he has shown us his own unique learning curve of "nothing, nothing, nothing... mastery!" He has shown us again to never lose hope.  He will get there, you just need a little more patience.

Zoe is breaking family records left and right for her physical prowess.  She figured out one day not too long ago that she could climb me like a rock wall.  She digs in her tiny fingers and will use her teeth and toenails if necessary.  It's cute, scary and, well, painful (for me) at times.  Once she figured that out, it was only a matter of time before she made it up to the couch.  Then the couch became a trampoline.  To her credit, she's only vaulted off the couch twice, but I can't tell you how many times I have grabbed her off the arm of the couch as she tries to use it as a pommel horse.  Never mind the silver, I may not have any hair left by the time this one reaches adolescence.

She's also shown a little more interest in her twin as of late.  They are always aware of each other, but other than a fleeting moment here and there (such as her trying to pull him up to a stand by his ears or removing some cherished object that he is currently enjoying), they as most children their age, tend to parallel play.  I've found them working together on several instances, an idea that I have to admit that I can find a bit unsettling.  One of their newest tricks is what we call "boosting the signal".  Before, if one cried, the other would look over as if to say "what's your problem?"  Like this:

"WTF Dude?" (2 days before their first birthday)

Now, if one cries, the other will do the same to make sure they get heard.  I've watched the other look at the crier first to assess the situation and then respond with a yell of a similar pitch, volume and timbre.  It is... freaky.  Especially when there are no tears on the second twin and the keening stops the absolute second the first twin does.

I've also found Zoe sitting down next to Wyatt and chatting to him.  We were coming in from one of our many shopping trips the other day and I had only managed to get Zoe out of her car seat in the living room before having to quickly run back to the door (to assist Sean with some armful of awkwardness he was trying to bring in).  By the time I had walked the 30 feet back to where they were, Zoe had sat down on the floor next to Wy in his car seat and was babbling away at him.  At one point she leaned in and patted him on the head as if to say "S'ok.  Mom will be back soon.".  On my return however, she wobbled off pretending she had more important things to do.  Typical.  Wyatt however, beamed at her from his chair and said "Zazazaza!".

If you're keeping track of Team Logan's teeth tally, we currently have Quinn at -1 (+3 adult), Wyatt at +2 and Zoe at... somewhere between 8 and infinity.  Seriously, it's really sharp in there and there was a period of a week where I was trying to peer in/feel around for a total.  I finally figured out that if I dangled a cookie up over her head, she'd open her mouth and look up.  Works for both toddlers and pets.  I discovered then that she has 11:  eight in the front and three molars.  Apparently, cuspids are still for losers.

Quinn is having all sorts of adventures that only a boy of six can appreciate.  He's discovered that he loves day camp, which is awesome.  They swim every day, hike, climb the rock wall, do crafts, archery... all sorts of outdoorsy sporty stuff, which he likes very much.  We like the fact that it gives him a break from the babies, puts him with kids his own age and then runs him bloody ragged.  He tells us of his day in a sleepy voice once he gets home and assuming he stays conscious through his dinner, he retires early to do it all over again.  It is awesome.  He is growing up so damn fast; at least this way he has some great summer memories that don't involve the TV or waiting patiently for one of us to finish something so that it can be his turn.

When he's not exploring the great outdoors or playing with his siblings, Quinn continues to draw.

On my beer fridge, yet.

When I found this international salute, I was stumbling blurry eyed to my Tassimo, which sits on top of the mini-fridge.  I called him over and asked him about his artwork;  he proceeded to whip out his globe and not only show me each of these countries, but also the capitals.  Wow.  That's a lot from a 6 year old, especially before 8 am (and more specifically, my coffee).

We are not a sporting family, but we have won more than our fair share of victories here lately. They probably seem not much to most people, but to us they are world class performances.  Wyatt works harder every day than other kids his age.  Right now they are all doing their own thing as they grow:  Quinn is picking at his dinner in larger quantities and is now going to bed early, Zoe eats everything that isn't nailed down and has given up sleeping at night and Wyatt sleeps only at night and during mealtimes.  Just as the Olympics started, lots of folks were talking about the "Olympic Mom" Best Job Commercial from P&G. I can relate to this.  My family is a lot like this.  Watching Wyatt sit up for himself the first time, after months and months of trying... I can't even describe properly how that felt.  No crowds roared.  No medals were awarded,  but, I felt so incredibly proud as I hugged my child and cried.  I relate a lot more to this one too, one that does not get the same amount of airplay:

The rest of the world may not see Wyatt as I do... yet.  One day they will.  One day he and others with a learning disability will be able to live their dreams, free of prejudice.  Soon.  Until then, we will continue to press on, through the pain and the rewards alike.  Come what may, my children, are always going to be 1,2,3 on the podium as far as this judge is concerned.

What is this "Normal" of Which You Speak?

Today is Saturday, a unique breed amongst the other days.  To many, it's the first day in their two days of respite from the rat race.  To me, a shiftworker, it's just another day.  Today, in fact, is day four of nine, where I am supposed to be cleaning the basement and the stairs.  Since my sciatica has been ranging from cripplingly painful to moderately bastardly in the last week, we can safely assume that isn't happening today.  Instead I will blog...

Today's entry is made possible by my shiny new 'puter which came about solely because my other "laptop" decided to wink out and not display anything any more.  I say "laptop", as any sort of illusion that this thing was in any way portable had long since died out.  In the six years that it had been in almost constant service, we had first witnessed the demise of the battery which forced it to be plugged in at all times.  My then three year old son decided to play with it one day and in the space of 2 seconds had managed to rip off the "S" key.  It then became permanently tethered to both the wall and a desk as we had to plug in an external keyboard.  It has been moved from the basement to the bedroom and finally to the living room with the advent of the twins.  Where it sat, for many months, wheezing along with an external drive in situ, which kindly did all its major remembering for it.  Now, *poof*. It is blind.  Unfortunately, I have a whole whack of things on there that I did not back up and need to get off there before we either relegate it to the recycle centre or rebuild it for our son.  Yes, the same one that ripped off the S key.  The irony is strong with that one.

Saturdays have taken on another meaning for me;  Special Saturdays.  Those familiar with Twitter lingo will recognize #CT (Charity Tuesday) #FF (Follow Friday) and the like.  The special need community has started another: #specialsaturday, in the hopes of raising awareness.  This week's topic is technology:  how much Team Logan relies on their technology was highlighted this week with the "laptop".  Not only is it a much needed source of respite and an outlet for me, but it is also the hub of the house.  (Thank goodness it is back...)

My bloggy friend Renata over at Just Bring the Chocolate has come up with what I think is a brilliant way to spend a Saturday.  Unlike your typical blog hop, where participants jump from one to another to get to know other bloggers, she's added a twist.  A challenge, if you will.  Instead of dumping my URL and running ... er... trying to put your best face forward or whatever it is that you do, this time, there's work involved.  Renata has challenged us to "redefine normal".  I love this concept.  Love it.  In her words:

"There is no such thing as the normal family, just varying degrees of weirdness. Just like the pile of things that sits hopefully at the bottom of the stairs waiting to be carried up day after day, after a while, we don't even see our own idiosyncrasies. Parents of special needs children, arguably, embrace this weirdness to a more impressive level than many other families, and, should you come across us, you shouldn't be surprised if some of it leaks out into everyday life."

Oh yeah.

We've always been a bit "off".  Even before children, my husband and I were geeks.  We are, what I like to refer to as "delightfully eccentric".  We read a lot.  We know a little about a lot of different topics.  I am creative without actually being an artist of any sort of description.  When our eldest was born, we just incorporated one more into our weird little herd.  Quinn, as it turns out, is really smart, funny, sensitive and really into arts and crafts.  If that kid ever figures out what he is really good at, he is going to be rich.

We amped up the oddity factor when I conceived our twins.  Rare in itself, having twins brings on its own set of unique problems and creative solutions.  We've adapted behaviours for survival.  When one of those twins turned out to have special needs, there was a whole other level of urgency added to "adapt or be destroyed".

To prove Renata's theory that we overlook our idiosyncracies, I had a really hard time coming up with one little thing that makes us unique (since we have adapted everything quite well into everyday life).
I have been very fortunate that other than one surgery thus far with my "typical" twin, we haven't had to do much extra with Wyatt's Down Syndrome medically, other than go to a ridiculous amount of appointments.  By "ridiculous" I mean "mind bogglingly insane amount" as both kids have their own issues that require attention.  As they were 6 weeks premature, Zoe is followed by the neonatal clinic at the hospital.  We have a couple of appointments a year there as they evaluate her development.  She also has a Family Doctor, a Pediatrician and a Surgeon (who repaired her hernia).  Wyatt, so far, has the following:  a family doctor, a cardiologist, a cardiac surgeon, a pediatrician, an ophthalmologist, an ENT, an audiologist, a speech therapist and OT/RT/PT.  My kids need an assistant, which has handily come in the form of their stay at home Dad, another unusual thing about our family, when you get right down to it.  But, I don't think of these things, I only consider ourselves as fortunate as there are no tubes and wires with Wyatt; we have been spared the onset of CHF with his AVSD so far.  There have been no medications to give (other than mineral oil in his ears).  We have been "lucky".

Furthering her concept along, I was wandering around the house doing this and that and trying to come up with what made us different;  as I was doing this, I kept having to rearrange, pick up or sort out piles of stuff.  In our house, "the pile of things that sits hopefully at the bottom of the stairs waiting to be carried up day after day" is literally just that.  Piles and piles of stuff.  We have piles and piles of extra things that parents of singletons, special needs or not, simply do not have to cope with.  For example, our main floor consists of a large eat-in kitchen and a combination living and dining room.  Since Wyatt and Zoe have come into our lives, I no longer have a living-dining room; rather I have an area with couches and a main floor nursery.  The table has been moved out, creating an open area for the kids to roll around and play in.  There is a play pen in there at all times, a ready "penalty box" or soft place to put sleepy little people.  In front of our antique sewing machine, there lives what I like to call our "therapy corner";  a collection of items used for Wyatt's daily PT that have either been adapted for the cause or brought for that purpose.

Our regular readers will recognize The Bean and The Speedbump.  Along with these are (left to right):  2 nursing pillows, a stack of pillows, two "banana" neck stabilizers, an infant anti-rolling brace thing, a rain stick, a blow up roller with balls inside, two Bumbos, two stuffed friends, a yellow happy face ball, a beaded wire toy that suctions to the floor, an infant head rest pillow, the safety mirror,  a tambourine, the gymini-jillikers, a spare bathtub and two Sleep Number bolster pillows.

Any or all toys can be commandeered for the cause at any time:  we have four baskets that are about 1 foot cubed, full of baby toys that are jammed under the coffee table.  Stuff.  We has it.

Team Logan is nothing if not adaptable.  It's "do or do not. There is no try".  Renata has brought a good point forward:  in all our trying to show inclusion, to show our "normalcy", we've started to overlook the little things that make us, us.  We've forgotten what it was to incorporate every adaptation into our routine and as a result, minimize the hard work that we do.  Along with inclusion, I think we have to celebrate that too.  We do work hard.  We don't want to lose sight of that, even if it is a labour of love.  We have our little quirks too.  So, time allowing, I will be participating in the "Define Normal" bloghop.  Once a week, we should have a time to reflect on our little peculiarities, to embrace our differences with a little whimsy.

...And lettin' our freak flag fly, baby.

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

Better Living Through Peek-A-Boo

I haven't been feeling very brave.

I knew it was here somewhere...  It must be under the 19+ loads of laundry that I have dealt with (so far!) in the last 4 days.  Maybe I left it in my work bag?  Perhaps I kicked it under the couch by accident.  Whatever, where ever... the last couple of days I have been wandering around like the cowardly lion, looking for my courage.

Courage really isn't the right word for it either.  Neither is "special" or "blessed" or any other adjective that people use to describe "Special needs Moms". You know that thing that makes my magic helmet and the proverbial double edged sword less heavy?  That. 

The cause?  Nothing really.  Not any one thing and everything, all rolled up in puff pastry.  Probably a little bit of a crash too, as we are still coming down off the kids birthday's and Wyatt's new-found sitting prowess.  It happens.  No matter how hard you try, you do have days where you are worn down.

I came to a realization the other day as I stood downstairs at my bar, waiting for my morning cup of Tassimo.  I glanced over at a stack of books and saw our copy of "What to Expect the First Year".  As I stood there, waiting for the last few drops of coffee to fall, I smirked and half chuckled to myself.

There is no manual with a special needs child.  There is no manual for Down syndrome.

I used this book religiously with Quinn, our eldest.  Each month, I was delighted with each new thing that he had picked up.  Most of the time, I lauded him for being "ahead".  As parents, we dream and delude ourselves all the time.  We aren't supposed to compare our kids with others, but we do it without fail.  "See that?  With that fine motor control, he could be a surgeon or a dentist!"  "With those long fingers, he could be a concert pianist!"  "He's three months ahead with his speech!  Let's hope he stays out of public office..." and so on.  Constant comparison, constant validation.  As the title says, I knew what to expect with him.  There were very few surprises.

Zoe?  Pretty much the same thing.  She will always have the "six weeks corrected" with each of her milestones.  This makes it a little worse in a way, as "...she certainly isn't acting like a preemie!  Look at how far ahead she is!" 

Then, there is Wyatt.

With him I got a list of facial features, potential physical ailments and things he cannot do.  There is no set list for "can" or "will" or "when".  Information is partial at best.  There is no comparison, no handy yardstick. Instead of a book telling us "What to Expect..." we now have to embrace a whole new philosophy:  "In His Own Time".  There is no instant gratification with this one.  It takes a metric f☠ckton(ne) of patience and another still of sweat equity.  And time.  Lots and lots of time.

To me, everything happens for a reason.  As the fates would have it, I lost "What to Expect..." until a couple of weeks ago. I remember looking for it frantically at a few points, hoping to find an answer to some obscure question or another.  It's being lost until now has turned into a blessing in disguise, really.  For all our good intentions, month by month, week by week detailed comparisons between the twins would have been inevitable.  Contrasts would have been more obvious.  The differences at various points would have been heartbreaking.  Instead, this book remaining lost for so long kept everything a little more vague.  At least in this one instance, a little bit of ignorance was bliss.

I would not begrudge Wyatt a single thing.  Any dedicated parent will say that they would do anything for their kids.  I'm just putting my money where my mouth is.  Each and every thing has to be thought out; you constantly have to be aware of what skill you are trying to develop and what the ramifications are.  This morning for example, we had half an hour of controlled kneeling and quiet play therapy, followed by fun tambourine time.  I have learned that Zoe will be intrusive, no matter what you do;  while I am changing Wyatt's diaper, she is trying to step over him as she cruises around me and chatters.  Instead of pushing her away, I set her up on the double pillows too.  The babies got some face to face talking time as I gently held my sons hips and shoulders in alignment and his knees together.  They pulled a toy back and forth between the two of them, both of their chests on the pillow and when that became tiresome, Zoe rolled over and lay half propped on them, still chattering over her shoulder to her brother and I.  They each got a tambourine and after the usual back and forth trading between the two of them, I took a little time with each of them and explored the different sounds and actions.  Wyatt at first was sitting up, but he was obviously tired so he lay propped up on a nursing pillow and held his tambourine (and the maraca he was hitting it with) up over his head.  We patted, hit, shook and head butted our jingly noisemakers for a couple of minutes until Sean and Quinn returned and Zoe almost bowled me over as she ran for the gate, screeching for joy.  Sounds like a fun half hour, right?  The kneeling was to continue strengthening his core, getting his hips and legs ready to that unsupported and be able to get those knees under him so that he may learn to crawl.  Bringing his hands together and banging objects together are not milestones per se, but are important skills to refine as they lead to so many others.  Finally, connecting the dots between action and sound is an ongoing lesson, especially with kids with Down syndrome who are so visually oriented.

With Quinn, I tried to add certain skill enhancing activities, just like a lot of parents, simply because I could.  If I forgot or didn't have enough time, it wasn't that big of a deal.  He picked things up very easily.  With Wyatt, I have to.  Like Yoda says "...There is no try."

I found my "brave" last night.  Little did I know it was hiding under a blanket.  Wyatt would not sleep for love nor money and he was hanging out with us downstairs.  I had a fire going and a glass of wine in my hand and I was getting a little bit discouraged with him as he would not sleep, despite my best attempt at a Zen atmosphere.  I took another sip and started scrolling through my phone.  I heard a "YAH!" and looked over.  He grasped the edge of his blanket in both hands and pulled it up over his head.  Tired, (as we have been working on peek-a-boo games since they were very young) I gave a half-assed "Where's Wyatt?", only to have him quickly drop the blanket and grin at me.  I could not have been more surprised.  I gave him the "There he is!" and looked over at Sean.  He asked  "Where's Wyatt?  Where's he at?"

The blanket went up again.

Then it came down.  "THERE HE IS!!" we both yelled in unison. 

We did this for a good ten minutes.  Sometimes he would peek around the edge of the blanket and grin at me.  Sometimes he would get distracted by the TV and then yell at me and make different sounds at me to continue our game. He would go back and forth between both of us.  It was awesome.

I know... it's just peek-a-boo, right?  Not really.  See, much like our kneeling and tambourine time, it means a lot more.  It gave him an opportunity to communicate with us, one that he initiated himself.  We got to make eye contact and react to one another.  It also showed us that he is working on object permanence, that he has made the connection that when his vision is blocked by something (in this case the blanket), we and the world still exist.  As this is a visual task, it is not surprising that children with Down syndrome progress with it faster.  He showed us that cognitively, he is coming along.

For us, it was a much needed shot in the arm.  Physically, the evidence was there that he was progressing.  Now we have proof that everything else is too.  Each little step answers a few more questions and gives us a little boost that keeps us going.  Forget chemistry, we have better living through peek-a-boo.

Bravery?  Where are you?

Oh there you are!  I see you...



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Makin' Progress

Busy, busy...

It has been such a busy week with Team Logan.  We have updates, we have birthdays, we have goals.  We have cupcakes.  What's better than cupcakes?

Wyatt went for his one year hearing test a week ago and did very well on all accounts.  As yours truly was working, Sean had to take both babies by himself.  Wyatt did not have to be asleep for this test (thankfully); I think that would have been almost impossible to achieve. You may remember from the last audiologist appointment that Zoe screamed loud enough to be heard inside a soundproof room.  She stayed true to form and did not disappoint this visit either.  However, despite the not-so-ambient noise from my daughter, the audiologist felt that Wyatt's hearing was within normal limits except for one small area which was inconclusive.  She was unsure as it could have been Zoe's interference and distracting abilities or just Wyatt deciding not to respond to the sound.  Regardless, we took it as good news.

The very next day was their first birthday.  Although I did blog a bit of a retrospective in the morning, the afternoon and evening were spent with the babies.  Lots of pictures were taken and vids were shot.  Both Wyatt and Zoe loved their first taste of cake, which wasn't anything fancy.  For Quinn's first birthday I went all out and made a special no added sugar, no egg thing that tasted vaguely like raisin bread.  This time around I didn't have time (or the desire, frankly) to make anything like that, so instead we opted for angel food cake cupcakes (with confetti sprinkles) and whipped cream.  Naturally, they loved them. 

Babies Eating Cupcakes.  YUM!

Saturday was their birthday party.  Unfortunately, we woke up to a blanket of snow.  That meant that most of our party guests (who were coming from out of town) were unable to make it as they were pretty socked in.  It's February.  In Canada.  What can you do?  We still had a great time with the few that did come and the babies were thoroughly fêted.   

Aside from cake, they've explored quite a few new foods and textures lately.  Both are crazy about cheese (cottage and cheddar) and were treated recently to their version of mac n' cheese (just don't tell them it has pureed cauliflower in it).  They've attempted very small pieces of cooked broccoli;  Zoe was nonplussed while Wyatt thoroughly enjoyed it.  That is, until I discovered that he was just stashing it in his high palate.  Pancakes, raspberries, watermelon... and the list goes on.  The biggest change in their diet this week has been switching them from formula to homogenized milk.  They are still breastfed most of the time, but their diet was supplemented with formula when I was at work and with a small "top up" at night.  That has been switched out to milk and thankfully, everything is well so far.  Next up:  eggs.

At our session this morning, we discussed future goals with Wyatt's therapists.  At six months, we hoped that by this time Wyatt would be sitting independently (while bracing himself), propping himself up on his hands while on his tummy, pivoting while in that position and starting to commando crawl.  As of this morning, he can sit up independently while braced for 5 minutes (and without bracing for a short period of time).  He props himself up on his hands while on his stomach and can pivot slightly less than 90 degrees.  His rolling has improved to the point where he can log roll non-stop and in both directions.  He is not crawling, although he did demonstrate a little "going backward" today when he was trying to reach for a toy (and was able to "push off" of his worker's hand and slide forward to reach his goal).  Everyone is pleased with his progress overall.  Today we set new goals:  Hands free sitting, pivoting 90 degrees, backwards or forwards commando crawling and feeding himself more independently.  The last is a bit of a tricky one as he is quite content to grab a handful of my hair or another foreign object and put it in his mouth but not food.  He picks his solid food up, plays with it, but if he eats it, generally it is because we are putting it in his mouth.  I think it's just a matter of proper motivation, as I turned my back for a second on Saturday to help a party guest with something and turned back to find this:

Wyatt's Ninja Noms

No one can resist a cupcake.  No one.

Slowly and carefully, Wyatt is developing, albeit at his own speed.  He is strong and healthy and continues to delight anyone in his presence.  At one year in, we know we are still new at this;  it will probably get a lot harder as he grows older.  Right now we are progressing and that deserves to be celebrated.  Quite possibly with cupcakes.

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I've also done a guest spot on "Life with Penis People" this week.  Stop by, say hi to Danielle and read my post "A Little Longer and a Little Different".  You won't be disappointed.

Sittin' Pretty

Life has been kicking my ass lately.  Stress is high, motivation is low.  Haters gotta hate.  Between appointments and bookings and weekly therapy and work and the never ending train of things going by, I've found myself impatiently waiting for sight of that caboose.  Thankfully here is a break in our schedule, this train has finally passed and the crossing bar is going up.  I'm off for a few now and I could almost hear the engine revving in my head to get the hell out of Dodge. Which I did, as soon as the lights stopped flashing.  Zoom!

Team Logan has been hitting the milestones hard in the last while;  there have been quite a few "firsts" and realizations with our little brood.  For example, we seem to have a finite amount of teeth in this house.  Zoe has sprouted three little pearly daggers, while her big brother Quinn has lost two and is possibly working on a third. The first one to fall came out by accident;  Quinn was running around the living room and slipped and bumped his mouth on the couch.  There was blood... lots of it.  He was pretty freaked out at first until I explained a few things.  1) the bleeding would stop eventually and 2) his hysterics at the sight of blood would have nothing to do with [this weeks goal of] becoming a doctor.  Thanks, Wonderful World of Psychiatry. 

His second tooth came out a few days ago as I "accidentally" popped it out as I was "assessing" it.  His two adult incisors are growing in at a furious rate and the baby tooth had fallen over and had started to imbed itself sideways in the gum.  After the initial shock and surprise (and less freakout as there was less blood), it lay in it's jewelry box totally forgotten about for two days.  He finally remembered to put it under his pillow last night and was rewarded with a dollar.  He added it to the five dollars he got for his first tooth and is [quote] a happy miser [end-quote]. 

Zoe's latest kick is shouting.  I don't mean yelling as she is hungry/tired/hurt, but rather shouting for shouting's sake.  She'd make a great Vogon guard.  Her babbling just seems to be set on 11 at all times and when not exploring the endless permutations of "Dada", "Daddy", "Bob" and "Bop", (complete with wild hand gestures) she works on her version of The Who/CSI Yeeeeaaaaah!.  At all hours. At random intervals.  It's especially charming after a couple of night shifts. *shiver*.

She's also almost walking.  The cruising is one handed at best and every object that she can roll or shove across the floor is an assistive device.  This includes (and is by no means inclusive of):  Wyatt's "Bean", the Bumbo chairs,  the musical table, and a 10 lb basket of toys.  She'd roll Wyatt along if she could.  I'm not kidding.  She's a bulldozer.  You have been warned.

We've added a few things to the babies' diet as well.  The pediatrician was shocked that we had Wyatt on more than a simple puree.  We've been slowly bringing more texture/less moisture to their food for some time now.   Zoe should be eating a lot of finger foods, but it is hard to have two completely different meal textures on hand at all times.  Instead, we've reached a happy medium.  Our homemade oatmeal has more lumps, as does the barley.  They eat rice shaped pastina:  mixed into their food, in clumps with melted cheese, and individually if they want.  If they have a pureed banana with their cereal in the morning, we set some aside and cut it up into tiny little bits for them to work on.  Zoe works on her pincer grasp with Cheerios, Rice Krispies and Special K, while Wyatt works on his tongue muscles and synchronizing his chewing and swallowing.  You may have to feed the pieces of cereal to him, but you also have to count your fingers afterwards. Recently, we've added cottage cheese, mashed textures and tiny chunks of cooked fruit.  It's been successful all over.  I haven't quite introduced them to their Momma's famous homemade mac and cheese yet, but after some pretty frustrating months, it looks like we will get there.

The best news all week was Mr. Wyatt's sitting progress.  He's been improving slowly in this area for the last little while.  We've been working on his core, improving his posture and putting him in a sitting position as much as possible.  Our perseverance paid off yesterday as he managed to sit, unassisted for over a minute!  It was amazing! 

Look what I can do! We managed to get him to do it again, at least long enough to take the above picture.  He's tired... you can tell as he is starting to list to port.

We've found lately that putting one of the smaller nursing pillows around him while he sits gives him a tiny bit of support (and a handy crash pad).

Sittin' and a' grinnin'

Life with Team Logan is never dull.  But, that's life with special needs.  Sometimes you need a helmet, sometimes it feels like your heart is about to burst.  Big girl panties are a must and we don't have any positions open for part time people.  Somehow though, it all works.  It isn't easy to get out of bed some days, but we are getting there, one milestone at a time.  We may not be rich or have the best of things, we may be short on sleep... but we are sure sittin' pretty. 

Yes.

Down, But Not Out

As I was pulling on my "Mom uniform" this morning (yoga pants, random oil stained T-Shirt, slightly too-tight hoodie, raggedy pony tail), two things occurred to me.  The first thought involved cursing with the realization that I was going to need socks (AKA Satan's footwear) for my eventual run to Costco.  This irritates me every time as I abhor socks and rarely wear them.  Even in January.  In Canada.

The second thought involved a bunch of new information about the twins, especially Wyatt.  Miracle upon miracles, the socks came easy, the Costco run (and most of the day) is over, the socks are off again.  Here I am, ready to share.

Last Wednesday, Wyatt had a trip to the cardiologist.  I was a little antsy as this was the first trip that Hubs had to do on his own (as I was at work).  In typical Logan form, the entire thing was a fiasco.  I won't spoil his story, but I will say there was a garbage truck, a bunch of staring people and a broken elevator. There was also some unexpected news.

At our last visit, we were told that we were looking at pushing Wyatt's surgery off to somewhere between ages 3 and 4.  As of this visit, the plans have changed.  There is some concern about the relative pressures in the chambers of his heart.  The thinking now,  is that since he is doing so well (and is still largely asymptomatic), that we will be doing his surgery sooner rather than later.  We are waiting for an appointment with the surgeon at "Sick Kids" (The Hospital for Sick Children) who will assess Wyatt and ultimately make the decision on when he will do the surgery. 

Let's just cut to the chase and say this was not the results that I was looking for.

I don't know why, but I was hoping that the hole in his heart was closing, or was doing so to such a degree that we could wait a few years.  I know, it is a long shot, but with the results that we have had so far, a mother can hope.  And I did.  What else could I do?

Sean called me at work when he got home from his doctor adventure.  I have a post-grad student currently, and all he heard me say after "How did it go?" and a long pause was a tiny "oh".   Despite the presence of logic, despite my understanding of the situation, it still felt like something had kicked me in the chest.  No matter how straightforward this surgery is going to be, I still don't have to like it.

Once we have a surgery date, we can start planning;  without that date, things are pretty much up in the air for the next, oh, eternity until we have that particular date.  I am trying very hard not to let that stress me out.

Tuesday morning, we had another double booking adventure.  Fun! (No, not really...) Wyatt's therapists were here Monday and as far as we knew, we only had our eldest son's parent teacher meeting at 8:30 am the following morning.  Right in the middle of the session, we got a phone call from the pediatrician's office reminding us of our appointment the next day.  At 9:30.  At the opposite end of town.  Yikes!

Our day went something like this: both got up, he got eldest ready for school and then took him there for the parent teacher meeting.  In the meantime, I got the babies up, fed, dressed, bundled and in their car seats, ready for Sean's return at around 9.  We loaded everyone up and shot across town.  We were only a few minutes late (thanks to the worst parking lot EVER) and only got the secretary's half-assed snarky disapproving face.

Once in, it was another episode of unloading, undressing, handing off and handing back of babies as we got them weighed and ready for the Doc.  Wyatt is currently 14 lbs, 13 oz while his "little" sister is now 16 lbs, 14 oz.  Zoe is also 2 cm longer than her brother.  The effects of the hypotonia and delay are getting more noticeable.  However, on the positive side of things, both are growing steadily on their prospective charts.  The pediatrician was impressed by Zoe's level of mobility and Wyatt's current functioning (learning to sit, discovering feeding himself and chunkier textures, no choking, happy as a lark).  All was going pretty swimmingly until Wy's physical assessment when she found tiny petechia on his chest and sent us immediately to the paeds clinic at the hospital to get his platelets checked.

[Record scratch] Pardon?!

I know it sounds innocent enough, just a little poke for some blood work, but to me it was a whole lot more.  One, the last time the pediatrician said "oh..." and pointed at something, Zoe ended up having surgery.  Second of all, thrombocytopenia in an 11 month old (6 weeks corrected) boy with Down syndrome could mean any number of things, up to and including leukemia.  People with Down syndrome have a low risk of most cancers, but they have a high risk of leukemia.  If it wasn't that, what was it?  How would this impact on his eventual heart surgery?  Was it related?  My head was spinning and my chest was tightening up as Sean dropped myself and the babies off at the hospital as he went to retrieve Quinn from school. 

I had to hold him down, which was anything but pleasant.  We are so lucky that he is a tough little guy as after a few snuggles, his big tears dried and we hung out to wait for results.  Both babies snoozed in the stroller while I texted the BFF madly as we swapped medical diagnoses and mega-grease lunch ideas back and forth.  After half an hour, I returned to the clinic.  I was only there a few minutes when one of the nurses called me over and told me his bloodwork was fine.  I swear my knees buckled in relief, but I'm sure all they saw was my grip tighten on the stroller as I exhaled.  The pediatrician had added a TSH to the order set, (simply because he would have that tested at about a year) but that would not be back for a while.  Since I had the info that I wanted, I chose to go home.

On the way home we totally greased out at Burger King.  Whopper, poutine, coke and an hour later, another damn Whopper.  Yes, you heard me.  I consumed enough calories to feed a family.  By the time I was headed for my nap (in the hopes of getting my chest muscles to stop hurting), the office had called to say that all the bloodwork was fine.  Thankfully.  Thank you universe... who/whatever is listening.  Thank you.

The last week has been riddled with drama.  In all fairness, we've been lucky for a while;  I guess it was our turn.   Like any parents, we get knocked down from time to time.  Without trying to sound like a Chumbawumba tune, we get back up again.  And again.  And again.  We have to.  For ourselves and for our family's sake.  Once we get our date, we will plan and it will all fall into place as it should.  It will suck, but it will happen and we will get through it as a family.  Of that I can assure you.

But, as the song says, I get back up again. You're never gonna keep me down.  Even with stupid socks.

Therapy Thursday: Workin' It!

It's been a while since I gave a proper update on Wyatt's progress.  That's not due to anything other than time, or rather, my profound lack of it.  Then there were things like holidays and anniversaries to consider... and, well, I fell into that trap of thinking that there wasn't much to report over all.  However, since the end of November, our little guy has made some strides.

Wyatt is still working on rolling both ways and "pushing up" on his hands.  Like his siblings, he seems to be more intent on discovering his verbal prowess, so it has been a bit of a frustrating couple of months to not see much improvement.  This is typical for Wyatt... plateau, plateau, plateau... and then boom!  Mastery! 

We have been continuing on with his positioning and gentle resistance.  Along the way, we have added a few things of our own that the OT's have approved.  He and his sister have a ton of toys;  some of the more simple ones such as heavier rattles and weighted balls have really helped to develop his eye-hand co-ordination (especially as he moves things from one hand to the other). Toys such as blocks have helped his grasp and a little ingenious configuration of plastic links has helped both his grasp and build his arm strength.  Wyatt likes to grab your pinkie finger in one chubby fist and your thumb in the other and "drive"; with this in mind, Sean put together an inverted Y shaped configuration of plastic links, where he held the single strand and Wy grabbed one side of the V part in each hand.  With that, we would then gently pull on the links and Wyatt would pull back, creating resistance.  We were amazed initially at his determination to pull on the links until we discovered that he was just trying to get them to his mouth to chew.  Amused, we let him have a little nibble now and again, just to reinforce a sense of accomplishment.  Even though pushing himself up has proven to be a bit of a stumbling block, he can quite contentedly rest on his elbows, shift his weight to one side, grasp a toy, chew on it and switch hands and comfortably shift his weight to the other side.

Casually shifting his weight
from one side to the other
so that he can play with his
version of free weights

His pivoting still needs some work, but is coming along.  He still prefers to roll to the one side, but we are encouraging him (with rolling exercises) to go the other way as well.  He can do both, he just prefers not to.  I personally don't have a full grasp of his rolling capabilities as I seem to always miss most of it. I sit and wait for him to do it, I get distracted and poof!  He is across the floor.  For all I know, he can teleport.

We are working with him, to some extent, every day.  Even if it is only a few minutes here and there in between the rest of the functioning of my crazy-busy family.  Mornings after breakfast seem to be the best time for him as he is alert and energetic (somewhere around 10:30 and 11, after cleanup and getting dressed).  He has a good hour or so of floor time which, in itself, helps him develop and grow, but we throw in a few exercises just to help him along.  Our workers (there are two of them currently, our regular worker and her student) are also OT's and they have begun visiting us twice a month to follow his overall progress.  Usually it is monthly visits, however we are getting double service because we have twins and a student available to us.  Either way, the time between visits allows progress to be assessed a little better as it is more noticeable.

Initially, we started with blanket or towel rolls.  Being a nurse, I'm an old hand at blanket rolls and can prop/secure/restrain anything with a blanket, anytime, anywhere.  We would use them to prop under his chest to help him raise up, we would put one on either side of his hips to keep his legs straight and not "frogged" (he likes to rub his feet together when he is lying on his tummy), we would use them to sit him more upright in his high chair.  We still use them for the latter, actually, especially if lunch is after a long exercise session and he is a little droopy.  Then, along came an object that we affectionately refer to as "The Speed Bump", which is a vinyl bar that, well, looks like a speed bump.  It can be used for a variety of things, up to and including propping him up on his hands and helping him sit.  He's not really a fan of the Speed Bump, and after a short time will tire of it.  I finally saw him pivot for the first time one day as he decided that he had enough time of the Speed Bump being under his chest and arms, pushed himself carefully down and to the side.  He then put his head down and promptly had a nap.

Wyatt working on his core

One of the more welcome additions to his routine in the last couple of months has been "The Bean".  Exercise balls are routinely used for developing balance and core strength;  kids with hypotonia are no exception.  We tried a few shapes and sizes out with Wyatt and found that an oval shaped "ball" with a slight depression in the middle was what worked best for him.  With "The Bean", we can work on his core strength and balance just by having fun with him.  For example, laying him on top of the ball and holding his feet and rolling it forward (while saying "Wheeee!" of course), he automatically pushes himself up and utilizes his head, shoulder, back and arm muscles to steady himself.  We also sit him on the Bean and holding his waist, bounce him up and down (he LOVES this).  I will say that once the ball/Bean was introduced, he did have an exponential jump in his balance. Within a two week period, he went from a floppy, bean bag baby that would nestle into your shoulder to a stiffer baby that would hold himself away from you when held him. 

Peekaboo!

Also in our regimen is a safety mirror which adds more fun and discovery to our exercises.  We like to put it on the floor and when he is getting tired on the Bean, it gives him something new to discover.  Since the introduction of the mirror, he will now try to put his hands flat on the floor (mirror) as he rolls forward.  We also use it across his lap when he is sitting to provide a little more interest into his grasping and banging of objects (and distract him from the idea that he is sitting). He loves to look at himself in the mirror, always has.  Our counter in the bathroom where he gets his bath has a huge mirror behind it; he watches us in the mirror and as "the other baby" have his tubby.  It wasn't a big stretch then, to incorporate it into our play and therapy sessions.

It may seem like a lot of work, having daily exercise sessions, but it really isn't.  Unlike traditional physiotherapy, we don't have pack up and lug him off to yet another appointment that he may not be receptive to, depending on the time of day.  Instead, we do it at home on his schedule and our therapists come to us.  This is important as we have a kindergartener who goes half days and Wyatt's twin Zoe who is hell bent on making what is left of my hair, grey.  We also make things fun.  Therapy isn't therapy, it's playtime and often all three kids are involved.  My eldest especially, as he keeps a critical eye on us to make sure that we are doing things right to help Wyatt with what he refers to as his "floppy-gitis".  Quinn came up with this term all on his own one day;  he was sitting beside me as I manipulated Wyatt into another position and he asked me what was wrong with him.  (We had already had quite a few) talks about DS.)  Being the Mom that I am, I answered "what do you think is wrong with Wyatt?" After a pause, Quinn looked at me and answered "I think he has floppy-gitis".  Not surprisingly, it stuck (and it was all I could do to keep from laughing).  At Christmas, my brother visited and I encouraged Quinn to tell his Uncle "what was wrong with Wyatt" as I thought that Bro might get a kick out of his nephew's clever terminology.  My whole plan backfired on me however (and demonstrated what a brilliant advocate he will be one day), as my son gave me a very long look and leveled his gaze on his uncle to report--in the most patient voice ever--"Uncle Bill, Wyatt has Down Syndrome". 

I had to leave the room. 

Like anything else, we've made Wyatt's therapy an adventure, one that we can all take part in.  Making it fun only serves to ensure that we participate as often as we can and that he grows up appreciating at least some forms of exercise.  It is frustrating at times and the results are slow at best.  But, the results are there.  They are visible in his thicker legs and stronger, steadier upper body, they are palpable in the muscles of his back as we pick him up.  Although I never seem to be able to watch him roll and pivot about the floor, he is doing it and managing to turn himself around (in fact, he will do this in his crib and I will find him stuck with his feet out through the bars).  As his arms grow stronger, as his back and legs develop more, the closer he is to crawling and walking.  We will get there eventually.  It will take time, but we will get there... One Bean-y bounce at a time.

What a Year a Difference Makes

One year ago today I was sitting in a neonatal cardiologist's office watching fish.

There were a variety of goldfish and a large sucker fish who was avidly doing its thing as it hung on the side of the glass.  It sat there, mesmerizing me and munching on microscopic algae as its tail waved in the current.  The hum of the filter provided balm to my already fraying nerves;  my aunt had passed away a few days before and I had just heard that a dear colleague had been almost killed in a car accident.  My belly had grown to enormous proportions and I could barely walk, stand or sit.  I was ignoring the itchy/sweaty/squeezy feeling my "batman" support tights were imposing on my lower half in the fight to keep me from getting a blood clot.  It didn't matter.  I was the sound of one hand clapping.  I was Zen.  I snapped out of my daze only slightly when my name was called and ambled into the office, a lazy smile on my face.

Less than half an hour later, Zen would be replaced by Stunned with an Underscore of Building Panic.  An echocardiogram on both my unborn babies had shown that baby B, my girl, Zoe, was fine but baby A, my boy, Wyatt, had AVSD and probably a chromosomal disorder, most likely Down syndrome. If the doctor had leaned over the counter and slapped me with a dead fish, I would not have been more surprised.   I listened and made notes and teared a little. I (somehow) had the presence of mind to write things down, as my memory was shot and I knew that my relative calm was momentary.  That stunned feeling got me into a cab and got me home.  Once inside the door I half tore off my coat and finally collapsed, sobbing.  It was an ugly cry, a guttural cry.  Definitely a contorted 'wild horse face' cry.  I was completely oblivious to time and space and the pool of dirty, salty water that had melted off my boots and was currently soaking my pants.  I was alone and completely helpless and beyond any hope.  You hear people say things like "it felt like my heart was ripped out" and you think "really?", but this... this is pretty much as close to the truth as you can get.  Your chest aches, you can't breathe and you have that discombobulated feeling that you are teetering and about to fall, about to slip into unconsciousness or death.   The room was spinning to keep up with my racing thoughts. All the reassurance from the genetic counselor in September was pointless.

They were wrong.
My son was disabled.
He was less than perfect.
My son, my baby boy, might die at worst or be delayed at best.

Why?

Why why why why why?....

Why, when I had done everything right--when many people do drugs and all sorts of horrible things when pregnant then go on to have healthy babies--I have this happening to me?  I pulled myself up to the island and half-collapsed again and cried into a stack of bills and junk mail, all the while still clutching my keys. An indeterminable amount of time later, I stood up, hastily wiped away the tears and trails of snot and cleared my now sore throat.

I had phone calls to make. 

It's been a full year and I still tremble a bit when I think of that day.  That day was really Day 1 of my New Year.  Day one of My Year of Down syndrome.  In the subsequent weeks my panic would lessen as my knowledge grew.  As my understanding and acceptance grew.  As my network grew. As I ultimately got over myself.

During this time, I've done a few things.  I've created this blog and found a little bit of therapy and a whole lot of coping for myself.  I'd also like to think I've become a better writer in the process. If the emails and PM's and comments are to be believed, I've touched many.  When someone contacts you to say "I don't know anyone with Down syndrome and I don't have any kids and I found your blog by accident when looking for wine blogs... but I really like your stuff", I think you can say that you are doing something right.  With this blog is the Facebook page, the Twitter feed, Pinterest and the poor neglected YouTube channel.  Between all the social networking, the research, the kids and my full time job as a Mental Health RN, well, let's just say life is pretty full.

My personal support system has expanded as well.  During the course of the year, I've met up with (both in real life and virtually) parents of children with Down syndrome.  Now, my network stretches across the planet, from the UK and Ireland to California to South America and on to Australia and the South Pacific.  It is unbelievable, it is fantastic and so comforting to know that we are all united in this one thing.  Almost everyone has a story like mine;  they can remember the day they ''found out" in crystal clarity.  Sometimes it was ahead of time, more often than not, it was in the delivery room or in the NICU.  We all have different levels of understanding, our lives have taken many different paths and we all certainly don't see eye to eye.  But we all share this one this one thing.

We've seen a wave of inclusion in this time too, from home coming kings and queens to cheerleaders and swim teams.  The latest is a boy named Ryan, who appeared in an ad for Target.  We don't have Targets here yet (so I haven't seen the ad first hand), but they are on the way this year.  I look forward to supporting them in the future if they continue with such inclusive advertising, although, being Canada, we'll probably end up calling them "Tar-Jzay".

The biggest thing this year, no surprise, is the babies themselves.  Zoe, Wyatt's "typical" twin is bent on being Daredevil.  She is determined to make her own way as, unlike her brothers, she is an almost walking, almost talking marvel at 10 mos.  No one told her she was "6 weeks corrected", and I'm pretty sure she wouldn't listen if you did.  Wyatt has beaten quite a few odds himself, other than the 0.003% we were given as the chance he had DS in the first place.  His AVSD is quite balanced and has proven to have little or no effect on his development.  The boy that was supposed to be in congestive heart failure by one month and needing open heart surgery by 3-6 months has pushed off his surgery to 3-4 YEARS of age.  We have a cardiology appointment coming up this month and we will see if what I think (and hope) is actually happening:  that he has pushed his surgery date back even farther.  We work on his muscles daily and he sees the OT twice a month.  He has gone from a fearful unknown to a 4lb, 13oz baby with no muscle tone and an upside down ECG to a thriving 15lb (-ish) ten month old with sparkling eyes, a sense of humour and the ability to charm everyone around him.  He, himself, is the greatest accomplishment of this year.

We've all come a long way from my puddle on the kitchen floor.  Patience, time and education have gotten us all here;  these things will sustain us through the years to come.  We have learned to embrace all of our children for who they are, especially our twins that are so radically different.  I've even found a few moments here and there to regain my Zen.  What a year we have had. What a year a 'difference' makes. 

My Happy, Healthy Baby Boy<
Wyatt, 10 months old.

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: