The Charlie Summit

31 for 21 Challenge – Day Twenty-Nine

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Last Monday, we hosted a ‘Charlie Summit’ at our house.  Claudia, teacher Chris, and Jennifer – three of the key members of Charlie’s team were all in attendance.

When Charlie was born we started at ground zero as far as our knowledge of what a Down syndrome diagnosis actually meant.  How would this diagnosis make our baby different from other babies?  Fortunately, Charlie was blessed to not have any of the common health issues that are often associated with Down syndrome – but he obviously still had the syndrome.

So how would Charlie be affected?  The most obvious area is physical movement.  Individuals with Down syndrome have low muscle tone.  And while Charlie’s tone is quite good, I remember when he was a newborn and would fall asleep in my arms – he became as floppy as a wet noodle.  As a result of lower muscle tone, it is more difficult to reach most of the traditional milestones that most babies accomplish naturally.  Rolling.  Sitting.  Crawling.  Walking.  Even speech is affected because of lower muscle tone.

The key is – while it may take longer for someone with Down syndrome to meet many of the traditional milestones – they can all be achieved.  And more often than not, a little therapy (occupational, physical and speech) helps to move things along.  These therapies ensure that each developmental milestone is reached in the proper order and helps the body to move properly – not just following the path of least resistance.

Naturally, since my Charlie is going to be the best kiddo with Down syndrome ever, we scheduled an appointment for his first early intervention evaluation when he was just weeks old.

A year later I can look back a bit fonder on that appointment, but during the actual appointment I was a mess.  I was a parent suffering from performance anxiety.  For my five week old son.  He was being evaluated on his physical movement, speech (yes, at five weeks), nursing and social skills  The list of things to evaluate seemed to stretch on for at least a mile.

At the beginning of the evaluation I proudly told them how Charlie had already rolled from his tummy to back – multiple times.  They quickly explained that this was highly unusual because ‘they’ didn’t typically reach such milestones early.  And they pointed out that he was likely rolling early only because of the discomfort caused by his reflux.  It was probably a fluke.

Meanwhile, my darling newborn son was lying on the middle of a mat while three people with clipboards surrounded him.  Alex and I watched from the sidelines.  Were we supposed to cheer for our baby?  Exactly what are you supposed to encourage your five week old baby to do?  Charlie actually spit up most of the time.  Cried.  Nursed.  Back on the mat.  More notes and questions for mom and dad.

A few weeks later we got the evaluation summary.  The good news – Charlie was doing everything that a baby his age should be doing.  By pretty much just laying on that mat.  He had all of the standard baby reflexes (the ‘startle’ reflex, etc.)  Then there was the ‘exception’ – he was delayed one week in the social skills section.  And he didn’t seem responsive to my comforting at the evaluation.  What!?  I read through the rest of the evaluation in tears.  My son wasn’t responsive to me – his mom?  Sure, during most of the evaluation he cried.  He was in obvious pain because of his reflux.  I tried to nurse him, but I was sitting on the floor with three people with clipboards observing.  I was a bit tense myself.  This was my first evaluation too.

How dare they say he was delayed by one week.

Alas my skin was thin – paper thin.  I was new at this.  I wasn’t yet accustomed to the many professionals that would check out, observe and evaluate Charlie in the next months.  It didn’t help that I was still overwhelmed by Charlie’s diagnosis.

There were other evaluations.  There weren’t any clipboards, or questions for mom and dad.  Instead, I was the one doing the evaluating.  Many of our dear family friends have babies that were born a few months before, or even on the same day as Charlie.  I’m not going to lie and say that wasn’t hard.  And I’m not going to go into detail as to just how hard – because I’m past it now.

Comparison.  It happens before you even realize it.  I couldn’t help but compare our baby to those of similar age.  But was it really fair to compare Charlie to his ‘typically developing’ peers?  At first it didn’t matter.  I couldn’t help it – I compared anyway.  Anytime we were with another family that had a baby it was excruciating.  Initially it was painful because it was simply a comparison of who our baby wouldn’t be.

But as a baby, most of the differences weren’t that noticeable.  Charlie did pretty much everything all babies do – eat, sleep…well you know.  And he did them well.  He smiled all the time.  He loved to cuddle.  But eventually his buddies started to move around.  Sit up.  Crawl.  Walk.  And Charlie?  He continued happily in baby mode.

Enter therapy.  Occupational and physical for Charlie and educational instruction for mom and baby.  Every Monday morning, every-other Thursday afternoon and every Friday morning.  We have been blessed with therapists who have worked with Charlie patiently, encouraging him with each exercise and new lesson.  They focus on him – the darling little baby boy that he is – and not a diagnosis.

We have worked together to get Charlie’s muscles familiar with the movement necessary to help him reach each milestone. Teaching his body how to properly move.  This is so important, as many babies with Down syndrome often take the path of least resistance because of their lower muscle tone.  Take sitting.  With lower muscle tone it is easier to simply fold yourself in half and flip your legs out to move from sitting into to a tummy position.  However, by taking the path of least resistance it also creates bad habits that can add up and may difficult to break later on.

One milestone that we are currently paying special attention to is crawling.  Crawling is such an important milestone – but not just for the obvious benefits of movement.  Crawling also improves and creates a cross-patterning that is very important in the wiring and development of the brain – for all kids, not just those with Down syndrome. Which makes crawling one of our primary goals for Charlie to reach in the next year.

We do Charlie’s ‘excersizes’ (as named by Henry) daily.  We have dabbled in baby yoga.  A few months ago we started a musical program that incorporates music, singing, rhythm, and movement all together.  We have learned baby sign language.  What spoons and sippy cups to use (and which ones to avoid.)  And we play.  I have teased Charlie’s therapists and we laugh together at how none of these moves are really ‘rocket science.’  Most of the things we do I naturally did with Henry.  For a brief moment.  But this time around I have to be much more intentional and aware of what we are doing and how it is helping Charlie reach his next goal.  So we work together as a team, Charlie setting the pace and the rest of us gently nudging him forward.

I too have learned a new pace.  I wish I could remember ‘the day’ that I turned the corner – the day that my perspective changed.  A particular moment when I stopped comparing Charlie to other babies.  When his age became an irrelevant number instead of a reminder of how many milestones he should have already achieved.  When I simply focused on what he could do.  I have became so proud of all that he has accomplished – each milestone a huge feat.  I realize that there probably wasn’t ‘one day,’ but I am certainly grateful that I have embraced this new pace rather than fighting it.  It is a blessing to simply love Charlie for who he is – not which milestones he has reached.

I now realize that those who make up Charlie’s team also feel the same way.  I don’t think that my skin has necessarily thickened up, but rather my point of view has changed.  Looking back at our initial evaluation, I realize that all of those who were holding clipboards only wanted the best for Charlie and wanted to figure out the best way to help him reach those goals.

That’s why last Monday was so great.  Our home was filled with a therapist, an educator, a family resource coordinator and Charlie’s mom – all of us advocating for Charlie.  Sure, it is still tough when people ask how old Charlie is and then question what milestones he has or hasn’t yet reached, but I know that we will get there.

It felt good to plan and set goals for the next year.  And we will absolutely work hard to reach those goals.  But in the meantime, it is so wonderful to just relish in the joy and pride that I have as Charlie’s mom.  To love my son for who he is – not what milestones he may or may not have reached.

You could say that the view looked good from the ‘Charlie Summit.’

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3 thoughts on “The Charlie Summit

  1. Such an interesting point, Libby, about just observing where our kids are today. Just that. Not compared to where other kids are, or where books say they should be, or where we’d like them to be…Actually, we can even apply it to ourselves too. This is what I am today. This is me. There’s a contentment that we miss and a joy overlooked when we spend all our lives evaluating where we are instead of just being there.

    Thanks for the thought.

  2. Libby
    Just today – we were working on crawling and walking. I need to stopping worrying about milestones and just be proud of Nathan’s accomplishments – thanks for pointing this out.

    Amy’s right – contentment could do us all some good.

  3. Good evening,

    My name is Lorenzo Johns. My wife Lesley and I are taking home our second daughter tomorrow. Her name is Loren Zoe Johns. She will be three months old on December 8. Born 9 weeks early, Loren was diagnosed with Down Syndrome. Both my wife and I have careers that seem to have prepared us for this moment. She is a registered nurse and I am an elementary school teacher who works with students with learning diabilities. Though we were slightly prepared for the potential of this diagnosis before birth. You still aren’t ever ready for the reality. Your journal has been very helpful in just the last 15 minutes. I look forward to following your progress as we begin ours. We leave the hospital tomorrow.

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