A Story in Three Parts

Part one, as relayed to me by my husband

Today, my hubby picked J-man up at preschool.  As is often their habit, he swung into the drive-thru to grab dinner on the way home.  When they left the drive-thru, J-man called from the backseat,

'ar-get??"  J-man said, reaching forward. He said it again, reaching toward my husband with serious intent.  My hubby, always a softy for the J-man's desires, turned the car around and drove to the Target down the road. 

When they arrived, my husband went around to get J-man out of his carseat.  Upon doing so, J-man lunged toward the front seat, repeating over and over "ug-get, ug-get".

J-man did not want to go to Target.

J-man wanted a chicken nugget.

Part two: The OT evaluation

Yesterday we took J-man for an OT evaluation.  We have taken an "OT break" over the past year, and recently decided to start it up again.  We found a place that had similar philosophies as us, and we were visiting for the first time.

When we arrived, the director gave us a tour. The clinic is.. in a word... awesome.  I wished I was a kid again.  There are multiple gym rooms with swings, mats, toys of every kind.  There is a blacklight room, with stars on the ceiling and big floppy cushions.  They have a POOL for aquatic therapy.  It was a child's dream playland come true. J-man was nearly giddy with excitement.

And that tour, my friends, was a singular mistake.  Because once you have been in the candy store, you just don't want broccoli.

The evaluation took place in one of the many gym-like treatment rooms.  There were plenty of toys, all well out of reach, to just tease the J-man.  And clearly, doing the standardized testing they wanted to do was soooooo not what J-man wanted to do.  The temper tantrum was fairly fierce. 

Abandoning any hopes of formal testing, the evaluator tried to get J-man to play with some of the equipment.  But by this time, he had reached Defcon 4 of Crabby.  Eventually, he requested a ball, and they went into the next room to get one.  When they got back, J-man was still unsatisfied.  He came up to me and said over and over "be-ball, be-ball".  He signed ball, over and over.  We showed him the balls that had been brought in, but he still looked at me with these pleading eyes... "be-ball, be-ball".

The visit was something of a total disaster.

As I lay in bed that evening and went over the events of the day, I suddenly had a flash of insight.  I recalled that on one toy shelf, toward the top, there was a toy basketball hoop.

Be-Ball.  Basketball.  He wanted the basketball hoop to go with the ball.

Part three:  The Transition

J-man transitioned from the young preschool room to the older preschool room this week.

It was a day I had been secretly... or not so secretly... dreading.  I feared.  What if J-man couldn't handle the transition?  What if he couldn't leave his beloved teachers?  What if the couldn't keep up with the demands of the other room?  So much doubt has been spoon-fed to us recently (and you know who you are), that I was on pins and needles. 

J-man rocked it. 

From all reports, he was in bliss to be in the new room.  Everyone... and I mean EVERYONE... was shocked at how well he did.  I received an email today from the Director of the center with this simple message in the subject line:  J-man is having a GREAT day in the FISH room... with this picture attached:

When I picked him up on the first day of the transition, I had an opportunity to talk to his new teacher, Miss H.  She was glowing.  She told me that when J-man came over, the other children were full of questions.  She introduced him to the class and reminded them that they had all been classmates before, and that he was moving into their room now.  She told me that several of the children said "Oh YEAH, I remember J-man.  He is my friend", and there were several volunteers to be J-man's "buddy for the day" to help him learn about the classroom and the toys.  It seems that the children welcomed him with open arms.

To them, he isn't disabled.  He isn't "defective" or "wrong" or "delayed".  He isn't one big, fat negative... a never-will... a can't do.  He isn't "other".  How the adults in his life fail him, time and time again, and yet these children just open their arms and accept. Today, he is their friend.

To them, he is just J-man.  Perfect as he is. 

******************************

I am not sure what I am trying to say with these stories.  I have been thinking a lot lately about our issues with the school district, of the choices we are making and the decisions that others have made.  I have been trying to read the tea-leaves of the future, to try and anticipate what our next, best move is.  As he now moves into his new room, I still fear.   I still wish that he could have more support, so that when he tries so desperately to communicate, someone would be there to hear.  To understand.  To be his bridge. 

But maybe I, too, underestimate him.

Maybe he will just be his own bridge.

Proudly Flying Those Green Flags!

Don't hate, my Vikings friends.
I gotta have some team to cheer for!
Go Pack Go!

Ok, I am a Vikings fan... sadly... but my Number 2 team is the Packers.  So here is hoping they make it to the Big One.

Regardless of whether or not the Packers go all the way, it doesn't matter.  We are flying some pretty big Green Flags in this house.  But these are Green Flags a la Jman. 

Increased Imitation: Check
Increased Turn Taking: Check
Increased Communication: Check
Increased Shared Enjoyment: Check Check
Increased and more effective vocalizations:  Check Check Check

Today, we played "Buzz Lightyear Kicks a Stormtroopers Booty", "Spiderman and Batman Crash Cars", and had our own Wrestlemania session.  Long, sustained, appropriate interactive play.  Last week, J-man blew us away at speech therapy with his engagement, his requesting, his reciprocal play, his shared enjoyment and giant smile, and his willingness to even work on articulation tasks while in the midst of his play.  His vocal attempts at communication are off the chart... intelligibility very slowly increasing... but let's face it:  It is still a 50/50 deal.

Of course, there is also an uptick in frustration and temper tantrums.  And he isn't too fond of the limit setting I have started to enforce hardcore.   But doesn't that go with the territory?  In fact, I think that also deserves a Check!

On Children

I feel very negligent about the blog. 

I have started about a billion (ok, slight exaggeration) posts in my head, but this last week has kicked my booty.  My hubby had shoulder surgery and is currently going through a very painful recovery.  I had a (good) meeting with J-man's preschool, and also toured another private school for the future (which I really, really liked).    J-man  was sick early in the week, and I caught his cold late in the week.  Oh, and the regular chaos is also in play. 

Consider my booty kicked.

So, once I have my life straightened out (or at least a little less curvy), I promise to come up with some insightful stuff. 

In the meantime, I wanted to share with you a poem I stumbled upon this week that really hit a chord with me.  I will probably talk about it later, but in the meantime, here it is for your pleasure.  Discuss.


On Children
by Kahil Gibran

Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.


You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

"Where's Spot?"

A few weeks ago I was listening to a show on NPR in which they were discussing films and film-making, and I remember thinking, "Wow, if I could do it all again, it sure would be cool to be a film director.  Make these great stories, think about storytelling frame by frame, setting tone, etc etc.  How fun would that be??!"

However, as you can see from the video below, I will not be quitting my day job.  In my defense, however, this video was taken with my Samsung Moment phone via its' digital camcorder, propped with a  'phone holder' made of Trio blocks on a stack of books on J-man's nightstand.   So clearly I was lucky to get even this....

I wanted to capture one of J-man's best moments, and bedtime stories are quickly becoming that time.  We are reading a new book, "Where's Spot?", a flip-book with hidden animals under the flaps.  J-man thinks the flaps are like doors... as you will hear!




Ding Dong!!!

Naughty Notes

I was honored to be invited to participate in the S-O-S Best of the Best Blogs.  The topic this month is social skills and play skills in children with invisible special needs, and I was happy to share this story.  Thank you again to S-O-S for the opportunity!

The note from the preschool teacher:

... J-man was a little aggressive today with the kids... he was tackling one of the kids in fun!

Upon reading a note like this, most parents would be upset.  Horrified!

Me?  I was thrilled!

J-man is nearly four years old with significantly impaired language (think 2.5 standard deviations below the mean), apraxia of speech (hence huge intelligibility issues) and social skill delays.  When J-man was evaluated this summer, the assessment noted :  ...clinical impression is that J-man's challenges are related to his language challenges and a self-directed temperament in which maintaining a modicum of control is important. 

Translation:  J-man is a control freak who tends to keep to himself.  Yep.

Understanding how J-man relates to his world, to people, and to communication in general has been a bit of a puzzle for us.  He has always exhibited an interest in other children.  He finds them funny, amusing to watch, much like TV.  But his understanding of how to engage others, especially children, has always lagged far behind.  He watches from the sideline, quiet and withdrawn.  The tremendous language issues he deals with are only part of the problem... no doubt probably the central feature of his social deficits... but there is also this inattention to social cues, this lack of desire to engage, that exacerbates the problem. 

Six months ago, if another child took J-man's toy, he would walk away. 

Six months ago, if other children were running a race, he might watch.  He might not.

Six months ago, if other boys were wrestling each other, rough play, tackling...  he might ignore them completely. 

And today, when the boys in J-man's classroom start rough play, he tries to join in.  When the kids race around the playground, he races with them.  When another child tries to take his toy, he defends himself.  In other words, he is slowly starting to do what every other child his age does. 

When a child has a significant language delay, the emphasis seems to be on building vocabulary and getting the child to respond to requests for information (i.e. answer questions) and follow directions.  While this can demonstrate the 'raw' language and knowledge that a child has, I think it provides an illusion of communication ability that does not actually exist.  What is lacking... and what is essential... is the ability to have engaged social conversation.  Teaching a child to talk, to 'respond', is one thing.... teaching a child to become socially engaged and communicative is something entirely different. 

We are trying to embrace the Communicating Partners approach, which focuses on the importance of building social communication instead of merely language.  It is a slower approach, I think, dependent of a series of techniques that pull the child into paying attention to social cues, engaging in positive interactions, matching the child where they are and allowing them to build their language within the context of social relationships.  Again, the basic principles are as follows:

Balance: Talk about as much as your child; wait and take turns.

Match: Talk in ways that are possible and interesting for the child.

Respond: Talk about your child’s immediate experiences and ideas.

Share control:  Allow both you and the child to lead and follow equally.

Be playful:  The more enjoyable you are, the more your child will talk.

What we have found by engaging J-man with these techniques is that he has become aware of us. More present.  And aware of the importance of communicating with us.  Don't get me wrong... he still sucks at it.  And his ability to naturally engage and understand social cues, language, and rules will probably always be 'different'.  But it is like he is slowly waking up.  It is a beautiful thing, and a terribly fragile thing.

There is still  great reason for concern.  Because, while it is totally "developmentally normal" at four years old to engage in rough play with your peers, understanding the subtle social cues of when, where, and how to do this are well beyond J-man.  And explaining it, also well beyond him.  And the likelihood of him understanding.... well beyond. How will he develop these skills without the fundamental innate ability to develop these skills?  He is at this awkward crossroads of starting to see the value of social relationships and the complete lack of language and skills to really make those relationships work. 

My job is to help him.  And how do I do that when I can't be there to support it?  To translate his limited, awkward speech, to interpret the actions of others, and his actions to others?  To guide him? That was my hopes for what the school district support would have provided, but as you all know, that is no longer an option.  And so, we go on our own....

Ahhh... and there is the rub.

Anyone got tickets to Hawaii?

I need a vacation.

A real vacation.

Over the past few weeks I turned a "2010 wrap-up post" around and around in my head. How would I describe the last year?  What were the lessons learned?  Highlights, lowlights?  And after some deep, quiet, reasonable contemplation, I realized.....I sooooo need a vacation. 

2010 sorta sucked.

Not that there weren't some definite highlights.  J-man made some pretty cool gains, and we are on track to keep-on keepn' on!  But the lowlights... ahhh, the lowlights.  School issues, health issues, work issues, family loss, etc etc... the list goes on and on.  Family de la J-man has had quite a long, long year. 

And now it is 2011, and the future is murky and uncertain and a little scary.  And hopeful and optimistic and exciting.  And here (in the great white north) it is cold and cold and cold.  And I am tired... bone tired.

I sooooo need a real vacation. 

Highly unlikely to happen this year, but one can dream...

Is This Apraxia?

This is the Talking Santa App for my IPad.  It was $1.99.

Amongst all the features, you can get presents from Santa, give Santa cookies and milk, roll a giant snowball over Santa, take a picture of Santa with his friends, be mooned by Santa, make it snow and play Jingle Bells, tickle Santa, and beat him up.  Nothing says Merry Christmas like a giant snowball in Santa's face?

Santa also talks back to you.  When you vocalize to Santa, the program records your words and plays it back to you  in a kind of creepy "Santa" voice.

I shot this video of J-man "talking" to the Talking Santa Program on my IPad.  I originally shot it because it was cute... he clearly had learned that it made noise back to him... but then after I watched it I had to wonder:

 Is he actually talking to Santa?





 If I listen closely, I swear I hear a few words... or vocalizations that come close words. He waits for Santa to respond... and then responds back.  And when he adds the gestures, it makes me even more curious.  He will often "talk" to us like this... strings of sounds, often vowels, that have a slightly conversational tone to them.  It doesn't always feel like it is directed to us.  We do get quite a bit of directed one-word speech, usually related to a particular request.  But could this type of vocal play actually be his attempt to 'talk' to us?  But that the words allude him, or he is unable to even form them?

Is this apraxia?