Saturday, December 17, 2011

Inching along.

If you have children, then you most likely have a baby book to record all of your baby's milestones.  Perhaps you have tucked away some little momentos in the book as well...the i.d. band placed around your baby's tiny wrist shortly after birth.  A lock of hair.  Maybe even a first tooth.

When Miss J. was a baby, I loved taking the time to work on her baby book.  I wrote down every new thing she did, every word she said.  I saved every little momento.  I tucked her first drawings in her book, and then the first letters she would scrawl on paper.  Her book nicely documents those early years.

On the other hand, M's book had remained empty for quite a long time.  Partly because there were no milestones to record.. Part of it was that it was bittersweet when milestone did emerge.  They came, eventually, and were celebrated.  But they emerged so late in M's development that a certain sadness always lingered.  Avoiding the baby book was less painful.  For a long time, it lived tucked away in the back of a very high shelf in the closet.  

M's baby book has a section called "Visiting My Doctor". Most parents with typical children will record a cold their baby contracted or an ear infection.  Perhaps even a flu or roseola.  M's page reads like a medical journal.  The single page was not enough and additional pages were inserted by me.  When those were not enough I just moved all that to a three-ringed binder.

Baby books record milestones....but parents of children with special needs know that since milestones are not always a certainty.  We celebrate the inchstones.    Our children's baby books look quite different.

As parents of special needs children.....
We document head control and the emergence of visual tracking.
We document the first time our baby crosses mid-line.
We document pushing up on extended arms.
We document when they can finally side-sit and no longer W sit.
We document when our child can manage a pincer grasp or when they can place objects into a box and take them out again.
We document wrist rotation.
We document our child being able to build a tower of six blocks using one-inch cubes.
We document turning a doorknob.
We document being able to eat food without choking and drinking without aspirating.
We document when our child is able to independently transition from laying to sitting and then into a tall kneel.
We document not only how many words our child can say,  but also word approximations and how many signs s/he uses.
We document our child's use of PECS.
We document being able to correctly pick an object from a field of two, then four, then eight.
We document our child being able to follow first a one step command and then a two step command and a two step command with multiple attributes.
We document the first therapy sessions, the first pair of AFOs, the first set of Theratogs.

Do you know what PECS is?  Or AFOs or Theratogs?  If you don't, hug your child and be glad.

For many children with special needs, skills blossom slowly.  A new skill emerges and may take weeks, months or even years for it to become solid.

When M was 15 months, he figured out that he could get from one side of the room to the other with a primitive commando crawl.  It wasn't a typical commando crawl where the child uses their knees and elbows to push forward.  It was more that M would roll on his side and then would forcefully thrust his body to the other side.  In that thrusting motion,which was primarily using all abdominals,  he was able to move forward an inch or two.  He was able to travel about four feet in five minutes using that motion.  Technically it wasn't crawling, but it was locomotion.  I celebrated that M could cognitively decide that he wanted to get to an object somewhere else in the room and would use everything he had to get there.  A "true" commando crawl  would emerge several months later when he was two.  He managed a proper four-point crawl, on hands and knees with belly off the floor, at the age of  two and a half  years.

When medical professionals want to know when M achieved certain milestones, at times I am unsure of how to answer.  Do you want the age he was when the skill began to emerge, or do you want to know the age he was when a skill was mastered?

I once was sitting in the food court of a mall enjoying the rare treat of being alone.  I observed a mother holding a baby on her lap.  The baby had taken the paper placemat off the plastic food tray and was joyfully tearing the paper to bits. The baby was completely amused, the mother was not.  I could tell she was growing tired of having to bend over to pick up the bits of torn paper.

Clearly she and I saw this scene through very different eyes.

Perhaps this tired mother only saw the mess her daughter was making.  In my experience of parenting M, I was well aware that I was witnessing a neurological milestone.

Tearing paper, as simple as it may sound, is a big deal in child development.  Many neurons need to fire in rapid succession for a child to be able to hold paper steady in one hand and rip it with another.

I know this because I have spent thousands of dollars and many hours in therapy with M to teach him this.

I said nothing to the mother.  I quietly sat and sipped my coffee.

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