Silent Sunday: Everybody in the Pool!

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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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.