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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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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Don't forget to vote for Down Wit Dat as About.com's Reader's Choice for Special Needs Parenting Blog.   You can vote once a day, every day until March 21 using an email address or signing in through Facebook.  You can vote HERE.  -Jxox

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.

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.

Therapy Thursday: Shaping Up

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

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

Child Lying on Back, Facing Parent (Supine)

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

This position:

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

Child on Your Lap (Supine)

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

This position:

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

Child Lying on Parent's Chest (Prone)

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

This position:

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

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

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

This position:

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

Child Lying on Stomach, Supported by Parent (Prone)

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

This position:

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

Child Sitting on Parent's Stomach (Sitting)

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

This position:

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

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

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

This position:

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

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

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

This position:

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

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

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

This position:

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

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

Learn to Speak "Therapist " in a Few Easy Steps

Down syndrome, like most things, flourishes with the right attention.  In terms of therapy, this includes a multidisciplinary approach.  As each of these Allied Health specialties has their roots in medicine, it may seem to the uninitiated that they have their own language.  For our second Therapy Thursday I thought I'd define some of the most common terms that one would run into.  It always helps to know the language of the place you are visiting.

First, there are the disciplines:

Occupational Therapy:  Promotes the learning and strengthening of specific skills that aid an individual with the activities of daily living.  

Recreational Therapy:   Promotes well-being and the reduction of stress and anxiety by providing recreational activities.  This also promotes socialization.

Physical Therapy (or Physiotherapy):   Promotes optimum physical movement and co-ordination with a focus on preventative care.

Speech Therapy:   Promotes clearer, more expressive and understandable speech

Some important terms relating to Down syndrome and their relevance:

Hypotonia:  Weak or low muscle tone. The muscles also have reduced endurance.
Impact:  Infants with hypotonia have difficulty learning to breast or bottle feed as they are unable to maintain a proper latch and tire easily.  Later there will be a delay in both gross and fine motor skills as well as significant delays in holding the head up (for example) and the ability to sit, crawl, stand, etc.  Hypotonia also has an impact on learning to eat and swallow solids as well as learning to speak. It is important that those with hypotonia learn to use the correct muscles for movement as compensation often occurs (by using other muscles instead), leading to chronic discomfort and the underdevelopment of key muscle groups.

Hypermobility or Hyperflexablility:  joints that bend farther than normal.
Impact:  Much like weak muscles, the ligaments are tend to be looser in those with Down syndrome which creates joints that flex farther than normal. Hypermobile joints tend to interfere with the normal physical development and can cause chronic pain later in life.

Macroglossia:  an "enlarged" tongue.
Impact:  An enlarged tongue interferes with all aspects of eating, swallowing and speech acquisition.  It can also interfere with sleep and with enlarged tonsils and hypotonia, contribute to sleep apnea.

Receptive Language:  The ability for an individual to comprehend the language that is spoken or signed to them
Impact:  This can cause difficulties in learning, social interactions and communication.

Expressive Language:  The ability for an individual to express their thoughts and feelings in a verbal, sign or written form.
Impact:  This can cause disturbances in learning patterns, limit social interactions, communication and is frequently a source of frustration for the individual.

Oral-Motor:  That pertaining to the functionality of the anatomy and muscles of the mouth, lips, tongue and face.
Impact:  Many aspects of life, including speech and eating.

Gross Motor Skills:  The ability to use the larger groups of muscles.  This starts with the development of posture and continues on to include sitting, standing and walking.
Impact:  Improper use of these muscle groups will affect movement and comfort for the individual for the duration of their life. 

Fine Motor Skills:  The ability to use the smaller groups of muscles, mainly those in the hand in tandem with eye movements.
Impact:  Any motion or skill that requires successfully grasping and/or picking up an object

Activities of Daily Living (ADL's):  Everyday self care activities such as feeding one's self, brushing teeth, getting dressed, etc.
Impact:  Directly dictates the level of independence an individual has.

Range of Motion:  The extent a limb or joint can comfortably move.  Active Range of Motion is the extent that the person can move themselves, while Passive Range of Motion is the extent of movement when it is manipulated by another person.
Impact:  This directly impacts levels of movement and comfort.