They are Just Numbers.....

"They are just numbers."  "Try not to get caught up in the numbers."  These are the responses you get when you're mind is reeling over assessment results....

Last Wednesday, Josiah had his "6-month" assessment.  The "6-months" delineates the time since the last eval (at one year).  For this review, early intervention utilizes the "Michigan" evaluation tool.  The test yields numerical results in each category.  The numbers reflect the developmental age of your child, in each category.

Please note that Josiah is currently 18 months old.

Last week's test yielded the following results:

Adaptive: 10 months

Personal/Social: 14 months

Communication
     Receptive: 8 months
     Expressive: 7 months

Motor
     Fine: 7 months
     Gross: 8 months

Cognitive: 9 months

I had been looking forward to this evaluation.  I couldn't wait to "see how far he's come."  I mean, he only starting sitting in January.  He began crawling in February.  I couldn't wait until the numbers reflected his great progress.  If he wasn't 18 months old, the numbers would've have seemed so discouraging.

It's hard to explain how a mother feels with something like this.  I see Josiah every day.  I know how much he "knows."  I see how "smart" he is.  He is an inspiration to me, every day.  Then, I see the numbers.  Cognitively, he's a nine month old.  He certainly doesn't seem like a nine month old.  He's 'so much smarter than that.'  That's the Mom speaking.  Josiah is just so much smarter than the numbers reflect.

Motor - 7 and 8 months.  As much as the numbers are disappointing, I can also see the truth in them.  Josiah's older brothers were sitting independently at 6 months.  They crawled by 8 months.  They were walking at 11 months.  Conversely, Josiah was able to sit independently at 15 months.  He isn't walking yet.  He's almost 19 months old.  I know this is common.  I know this is not 'unusual' in the world of extra chromosomes.  We were prepared for this.  We know this, intellectually. 

As parents, we just want it to be different.  We do but we don't.  We don't want to change a thing about Josiah.  He is perfect just the way that he is.  We just want things to be as easy for him as they have been for his brothers.

We want so much for him.  We want so much for our boys.

In the end, I know Josiah will meet all of the developmental goals.  I know he will accomplish amazing things.  I just need to remember that it will all come in time, in his time, in His time.

Here's to perseverance, and patience.

"Patience is waiting. Not passively waiting.  That is laziness.

But to keep going when the going is hard and slow -

that is patience."

Author unknown

Steady Progress

Since Josiah's EI assessment, things have been moving steadily along.

Last week, Josiah met with D for physical therapy.  Once again, he was (apparently) out to impress.  D repeatedly put him on his tummy; he repeatedly tolerated it.  D was thrilled, again.  Josiah performs tummy tricks like a trooper.  He has started to utilize weight bearing in his arms, as shown here:

He is also starting to pull his legs under him.  These are two great steps towards crawling.

Although I don't have pictures yet, Josiah has started "side sitting."  He hates it, but is started to "feel" it.  I'll get some pics soon.

Josiah worked with K this week, if you can call it work.  For the first time ever, Josiah genuinely appeared to be 'lazy'.  He showed no interest in working.  It was hysterical!  He didn't want to roll over.  He didn't want to cooperate with tummy time.  He wanted no part of his session.  He was interested in casual play, feeding, and sleeping....too funny :)

I'm still waiting on the detailed notes from the assessment; I will post once available.

Meanwhile, I weighed Josiah yesterday.  It's only an estimate BUT he weighed in at approximately 13.6 lbs.  It's a definite weight gain.

Josiah will attend his first DS Clinic tomorrow.  We only have vague information regarding what will transpire there.  I'll look forward to telling you all about it.....

EI Assessment 052412

Yesterday was Josiah's much-anticipated 6-month EI (early intervention) assessment/review.  K (childcare specialist) and I have been excited about today, expecting to see great improvement.  After all, we thought, he had so many obstacles in his first few months.  He had multiple VSD's and ASD's (that we didn't know about, at the time).  In Dec, he had RSV (a blessing after all - without it, they wouldn't have found the holes in his heart so quickly).  At the end of January, he had open heart surgery; Then, he had a six week recovery period.  So, really, he's only been ABLE to make improvements since early-March.

Josiah was up early, fed, changed, and ready to greet his 'girlfriends' upon their arrival at 8am :).  The mat was ready to go; Josiah was ready to play.  This was an unusual session and Josiah sensed that.  I think he was a bit disappointed, at first.  D (physical therapist) always greets Josiah with songs....that was not true yesterday.  Josiah missed it, I could tell lol. 

Josiah was engaging with both K & D.  K performed most of the 'tests', while D observed (and recorded) the results.  Josiah did well at rolling over, grasping toys, even reaching for toys (at times).  He wasn't impressed with tasks requiring him to tap, look at items, etc.  He was very vocal with his 'girls'.  He's a social little guy :)

Josiah did very well yesterday!  The 'results' indicate the "functional" age of the child (at what age the child is currently functioning at).  Here is the score summary (when I get the detailed report, I will post the specifics):

• Gross Motor: 4 months (not surprising - this involves trunk, head, neck control, etc.  I'm tickled that he didn't score lower :)

• Fine Motor: 5 months

• Social/Emotional: 5 months

• Receptive Language/Communication: 5 months

• Self Care/Adaptive: 5 months

• Expressive Language/Communication: 6 months

• Cognition: 6 months

We are thrilled that he has made such great improvements in such a short period of time.  This little guy is amazing!!!!

A great EI Assessment

Early Intervention came out today to do their "Assessment" of Josiah.  The 'assessment' is really a formality, as the Down Syndrome automatically qualifies him for services.

The five-member team arrived.  Josiah was such a good boy and remained engaged (as much as an almost-six-week-old can be) with the process.  They remarked how relaxed he was.  They remarked how social he was (making eye contact, etc).  The performed various tests with him, testing social skills, gross motor skills, vision, hearing, etc).  The assessment lasted approximately one hour.

Then came the scoring.  Based on scores alone, Josiah doesn't qualify for services.  They say he shows no delays as this time (which, according to them, many DS kids already show signs of delay at 5 weeks).  Despite the great scores, Josiah will have EI services until his third birthday.  It's nice to know he has a team of people ready to help him reach his full potential.  We expect nothing less than that for all our children <3 

From the day we received the diagnosis, Carl & I believed in our hearts that Josiah would be very much like our two older boys.  Today confirms it.  Josiah is a six week old baby.  He loves to be held.  He loves to be cuddled.  He is a social little butterfly that loves people.  He is a smart boy.  We've known that from the beginning.  He is so much like our other boys.  We are truly blessed.

Another great day :)