The Baby with the Bathwater

I don't know what to say.

This evening I read this... well, shocking... post by Mom-NOS over at Hopeful Parents.  Horrified, I watched the video of a New Hampshire local budget committee member Ray Shakir.  And I read the story about the comments that New Hampshire state representative Martin Harty made this week. 

Go ahead....  take a peek.  I will wait.

Excuse me... but what the F*CK is wrong with people???

I make a real effort to stay away from politics on my blog.  Obviously, this will be my exception.

I recognize that times are tough.  We, as a country, have been used to wealth.  When you think of the standard of living that most of the people of the world have, we are blessed to live in this country.  And as we now struggle to regain our footing after the economic downfall we've had, I would ask that we be very careful not to also lose our soul. 

I know people are scared and distrustful of the powers that be.  I get it.  I even share it to a certain extent.

I would love to believe that this is just a bizarre exception.  That politicians in New Hampshire are just drinking some really bad water.  However, I fear that this kind of politics is more prominent than just a few bad eggs. But if we, the people of the United States, fail to educate and care for its most fragile and vulnerable citizens, we are doomed.  What kind of "great country" could we be if we allow that?  Since when do our economic difficulties become equated with losing our morals, our ethics, and our very soul?

Words

A summary of some words used by the J-man tonight, phonetically presented.

eea- uup :  Ketchup

aa-kk :  Clock

av eem :  Shaving Cream

topp :  Thomas (sounds just like stop, without the 's', and much confusion ensued because he also says stop)

OO-ooo :  Orange Juice

uggt :  Chicken Nugget

Hmmm... I wonder how much we miss in any given day??


Update:  Words from this morning

auG-lat ookie :  chocolate cookie (when he says chocolate it sounds like he has a giant phlegm ball in the back of his throat)

ava : Lava

eil-t-er :  Helicopter

bee- gn : Bacon

Helpful Tip of the Day:  Trying to speak J-man?  Try each word by pronouncing everything from the back of the throat, sorta like after a lot of dental work or having a mouth full of peanut butter.

Storytelling 2.0

We have a new app for the IPad that I just have to tell you about.   It is pretty fracken cool.

It is called Stories 2 Learn, and it has become something of a rage in the IPad/IPhone special-needs scene.  It is a social stories program that allows you to create stories to teach concepts like sharing and cooperation with pictures from the child's own life, or to provide preparation for something new coming up.  I am not using it for social stories (yet!), but rather to create stories with pictures about J-man's day or about the people in his life as a mode for conversation for us.  I have made two stories up to this point, one with simple pictures of family members so we can talk about Mommy, Daddy, Papa and Mumu, etc etc, and the other one is about what we do at OT. 

Here is a video of J-man scrolling through the A Day at OT story.  Usually I would be commenting about the pictures (trying to get a little conversation going), but in this video I wanted to just show how it worked. 



As you can see, you can put your own pictures, text and voiceover in the story.  How cool is that?

What You Ought to Know

Energy

I have none.  Nada. Zip. Ziltch.  The center of a doughnut.  The money in my wallet. 
The trust in my heart.

None.

Winter is long. Sunlight is scarce.  The house and all who live here have a serious case of the midwinter blahs.  J-man in particular has been restless, itching to have action and activity.  And Mommy's energy level is not helping matters.  A little bit too much TV has been watched.  A little bit too much IPad time.  Not enough to do, and not enough energy to do it. 

So, as you may already know, we decided to start OT again. 

We took an OT break for about a year and just focused on speech.  It was a good plan.  And it saved Mommy from having to deal with two sets of therapies at the same time.  But with the long, slow winter creeping along, OT would help J-man work on some of his motor issues, endurance issues and play skills.  And... let's face it... OT is FUN.

The trade off is time.  My time.  And miles on the car.  My car. 

Because I have some pretty solid opinions on philosophy and approach for therapy (ahem), I ended up choosing a OT clinic about 30 minutes away from our home.  And, ironically, it is also 30 minutes away from our speech therapist.... who is 30 minutes away from our home.  Think of it as a perfect triangle.  Or the Bermuda triangle.  Whatever.

And since we essentially have back-to-back therapy twice a week, I am getting to know this triangle very, very well.  Add in one additional speech therapy day once a week.  And preschool twice a week. And at home therapy time, J-man and Mommy style, all the time (at least it is suppose to be!).  And work (mostly evening shifts, 3-11:30p) two to three times a week and every third weekend (12 hours shifts no less!)...  which is also (you guessed it) 30 minutes away. 

I wonder why I am tired?  And my house is a wreck?  And I don't have friends? Or a life?

But I will say that I think the sacrifice of my time, sanity, and re-sale value of my car might just pay off. 

On Monday, Miss OT suggested that we try some aquatic therapy with J-man at the next session.  I was excited and nervous at the same time.  J-man would either LOVE IT or HATE IT.  Since he has trust issues (just like his mom), I wasn't sure how he would feel about going into a scary pool with a new person.  J-man loves water... sometimes... but has a healthy anxiety about it.  That, coupled with the "new person" anxiety might be too much for success.  Or not. 

Never know until you try.  So we tried.

It took him about 10 minutes to get him near the stairs where he threw lot of ducks and fish and balls and lizards into the water to be fished out.  And slowly but surely, he creeped further in.  Trust grew.  Pretty soon complete joy ensued.  By the end, he was jumping into Miss OT's arms from the side and into the water full force.

When we got home, I showed J-man and Daddy the pictures.  J-man was riveted to the photos.  "Water" he said (with sign).  "Wimming" he said (with sign).  Over and over.  Later that evening he pulled the photos up on the IPad again.  He said water and swimming and go as he pulled me to the door... to go swimming.

Ah, no.

Let's try the tub.

Pass on a Post

Once again, I have been honored to be a guest poster on S-O-S Best of the Best Bloggers.  Check out the list of great folks (and an older post of mine... if you follow me, you will know this post!).

And in that vein, let me share with you a post from one of my favorite bloggers ever, Robert Rummel Hudson from Fighting Monsters with Rubber Swords.

My response to his post:  Hell yeah!

My Valentines



Photo by Jerry Holt







J-man's Attempt at Persuasion

I might be in the running for the meanest mom in the world.

Yesterday was J-man's 4th birthday, and how did we celebrate?

A trip to the doctor's office, of course.

Yep, meanest mom in the world.

J-man and I have been sharing a cold since Christmas (I swear, it's true). Last week mine settled in my chest and brewed into a full-on bout of bronchitis. And of course, it was J-man's turn. So after a (crabby) speech session and lunchtime pizza at his favorite pizza place, I whisked J-man off to our pediatrician

As we pulled into the parking lot, J-man started to cry. "No no no" he called out.

I told him, "No owies... don't worry... no owies!"

He did not believe me.

Crying, he said, "Ar-get??" (Target)

"No honey, later... after doctor." I said.

As I carried him into the building he asked (still crying) "P-izza?".

"No honey, we just had pizza" I told him. Ugh, for any other event we'd have been out of there. But he clearly was sick and needed some antibiotics.

In the elevator, still crying, he pleaded "C-ar? C-ar?", adding the sign for maximal effect.

Heart is breaking here people. Breaking!

In the office, "Go bye-bye, gooo bye byeee".

In the room, still crying, he passes me his coat over and over, hoping I will put it on.  I manage to distract him a little with finger bowling on my phone, but it doesn't last. The doctor comes in, takes on good listen of his chest, and we are on our way with a script in hand. As we left, tears all gone, J-man says to the doctor, "Bye Bye!". And we left calmly and happily... on our way to Target.

Aside from the fact that I felt like Mommy Dearest on the way in, I was also heartily impressed at all the verbal attempts he made to make his wishes know. He tried multiple techniques, different options, and persisted even when mommy said no. He used spontaneous verbalizations. And he did it all while he was in a serious state of unrest.

And yes, he did get a toy at Target.

I am not beneath bribing J-man for his love.

My Groundhog

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?

A Christmas Story

I have had a little bit of writer's block.  Or is it blogger's block?

Anyhoo...

So much has been happening, ranging from ugly viruses to Christmas holidays to work to everything J-man, that where to start and what to say has alluded me.  And to be honest, it still does.  So, in order to break this log-jam, I will just start with a little Christmas story.

We didn't know how Christmas would go this year.

Last year, J-man really didn't get the concept of presents.  And Santa??  Who is that??  And while it was clear that this year he could identify Santa, I was pretty sure he didn't get the concept of Santa. What I wondered, though, was would J-man finally understand the concept of presents?  That they aren't just pretty colored boxes under a tree, but that inside the package was toys? 

J-man totally has the concept of toys.  Daily we are bombarded with requests to go to 'Arget' for 'oys'.  Every Day.  His love of toys... especially new toys... has reached epic levels to wit we must nip in the bud lest we become financially insolvent.  So I suspected that once he opened one or two presents he would get the concept pretty quickly.

And he did.  By present #3.  And he could have stopped... at present #3.  Allow me to introduce...  

Mooooooooon  Baaaaase



J-man, Cousin A-man, and the MOOOON BAAASE
One of the few moments of interactive play between the boys.
Mostly, they fought over it.

Over the last few months J-man has become quite devoted to looking at toy catalogs.  Quite devoted.  Like reading a book, he would look through the pages, point to toys and want me to label them.  His favorite, by far, was this Alien Moon Base and Rocket.  So we took a chance... Grandma got the Moon Base and I got the Rocket.... and hoped that his devotion to the picture in the catalog would translate to toy-love at Christmas.
We had him at Mooooon Baaase. 

His eyes were huge, people.  HUGE.  He insisted on opening it immediately, and from that point onward all other presents took a back seat to his Moooon Baaase.  He wanted to make extra sure we knew what it was.  He was very... VERY.. possessive of it.  Many a battle was waged between J-man and A-man over playing with the Moon Base and Rocket.  Sharing is not easy at Christmas. (How ironic)

But other than the occasional toy battle, J-man shone bright.  He cuddled with 'Papa'. He went sledding for the first time with us. He was fully engaged in decorating the gingerbread house with 'Mumu' and A-man, putting candy pieces on the roof.

It was a charming, beautiful Christmas.

The best Christmas present I could ask for.

Christmas Peace

Peace...

It does not mean to be in a place

Where there is no noise, trouble, or hard work

It means to be in the midst of those things,

and still...

Be calm in your heart.

--Anon.

A Blast From Christmas Past

A Merry Christmas to you all!!! 

Or Happy Hanukkah (from earlier this month)!!!

Or Happy Festivus, if that is your brand of Holiday cheer!!!

Whatever you celebrate, wherever you are,

may you have those you love close

and find joy and peace this season.

Visiting Santa

Last Christmas, Santa was not a big success.

However, for some unbelievable reason, the Easter Bunny was.  Explain that one to me.

The question of the year:  How would J-man react to Santa this Christmas???

So we arrived at the Mall and worked our way to Santaland.  As we rounded the corner, there He was.  I had planned ahead, choosing a Tuesday morning on the hopes that it would be quiet at the Mall and have a minimal line to see Old Saint Nick.  And I was right... the perfect situation to see Santa.  No line.  Same great Santa. 

As we approached, J-man stopped in his tracks.  I knelt down, pointed to Santa, and asked J-man, " Do you know who that is?"

J-man looked wide eyed and said "Ann-ta".

"Yeah,' I said approvingly, 'Do you want to go say "Hi" to Santa?"

J-man grasped my hand, pulled me in the opposite direction, and said emphatically, "Nooooooo!"

Okay.  Message received.  No Santa picture this year.

And then, J-man's preschool had a family Christmas party.  And guess who showed up??

This is as close as J-man would get to Mr. Claus, but he was perfectly fine with him at a distance!   And now we have a Santa picture this year.  All is well with the world.

A Conversation at Bedtime

Yes, you read correctly.  A conversation. 

The scene: J-man playing with my iPad, doing the Starfall app.  (By the way, he can do memory matching games.  Who knew...?)

Mommy says, "Ok buddy, bedtime in five minutes." 

J-man looks up from the game and shoots me a disgusted look.

J-man says, "Noooooo."

"Oh yeah, buddy.... five minutes." I repeat.

J-man sighs.  He looks me straight in the eye and commands, "Smiiiile!"

Apparently, if I am smiling and happy, he doesn't have to go to bed.  Probably worked.  He got another 10 minutes out of me.

Boys Will Be Boys

Really, believe me.... we don't promote violence.  Really. 

But... well... somehow, boys just know how to be boys....

This video was shot at my birthday party last week.  The "battle" began spontaneously between my nephew A-man (the blond) and my J-man (shorter and not so blond), and after a minute of completely normal, appropriate boy battling with the very safe foam swords, I just had to try and capture the beauty.  They loved it. I loved it. 




I think I see some pretty good interaction and turn taking going on. What do you think?  Oh, and although you can't hear it, J-man followed some "encouraging instructions" from the sidelines.  The Cops and Robbers soundtrack provided for your pleasure (and to protect the bad influences.. ahem...lets just leave it at that).

J-man has really taken a keen interest in his cousin, which is just flippin wonderful.  A-man is a little older (5) and filled with energy and great ideas, and J-man definitely is paying attention.  As I have always known he does.

But really.... believe me.... we don't necessarily condone violence...  but what is a little foam swordplay between cousins?

When God Whispers

On Friday, we fired our school district.

And it feels like I have shed the weight of the world.

Like I can breathe again, deep and easy.

Like I am free.

Until we cut them loose, I didn't realize how heavy and trapped I felt.  Like I was slowly drowning.  My hubby said our relationship with the ECSE department was like a relationship with an abusive spouse that you just keep going back to, hoping they will change.  That things will get better.  Or that you have somehow convinced yourself that you can't live without them.  But you can...

He was right.

(Relish that confession, babe, it doesn't happen often ;)

As some of you are already aware, we have had some issues with the school district services.  While I mentioned it on one or two occasions, lately I remained relatively vague about the issues. In part this was because we were in the thick of it and I wasn't sure of the outcome. However, through the magic of server-IP-identification, I also became aware some time ago that someone(s) at the school district have been regularly checking out my blog.  I will confess...  I am kind of amused.  Heck, the Internet is an open forum and I do put it out there.  And actually I have no problem with them reading my blog:  I am proud of my boy and all he is doing! But I was... hesitant... to go into specifics about my anger, frustration and angst regarding our conflict.  Not that I don't stand behind my blog...  what I say here I proudly own... but you know, they don't need to know everything.

Of course, now that they are fired...

I will admit I've had some fantasies about writing this post.  My hubby has been dying for me to tear the district apart, to name names and put it all out there.  But now that it is here...  what do I say?  That they acted poorly, were manipulative and lied?  Of course.  That they have made inappropriate and possibly destructive decisions?  Yep.  That they have failed to listen to us or treat us as equal partners?  Yep  That they have failed in their legal, ethical, and moral obligations to the J-man?  It goes without saying. 

We wouldn't have fired them for anything less.

But aside from telling the basic story in my letter, I have no taste for giving them much more of my time.  Instead, I would rather focus on why it took me so damn long to see what has been obvious all along...

We don't need them.

In case you are reading this, IEP "team", allow me to repeat:

We don't need YOU.

We will do this all on our own.  In many ways, we have been. You had a chance to be a part of something magical, something beautiful, something you could have been proud of.  Something meaningful. If you would have just opened your eyes and really saw him...

You lose.

The system is stacked against families.  The power structure leans heavily in the favor of the school district.  Don't get me wrong. The law is built for us.  But failing to follow the law carries few penalties and doing what is right for the child and the family is not necessarily rewarded.  The ethics seem nebulous at best, and it appears to be fairly easy to convince themselves that they have the knowledge and authority to be the ones making the decisions.  It is okay to keep parents in the dark about their options, because if parents know too much then they might challenge you.  As a parent, this attitude can feel very paternalistic:  Do what we say because we know best.  It is our system, our programs, and if you don't fit or agree.... well, too bad, so sad.  So much for the Individual part of IEP.

So we started with Hope.  Hope we get 'the good ones'.  Hope they will really see our child and work with us.  We smile and try and cross our fingers and pray that they share our vision.  And even as the evidence mounts that is not the case... we still Hoped.  Maybe they will see him as we see him.  Maybe they will.... 

And as Hope starts to fade... it is replaced by Anger.  Anger that they are failing in their duty.  Anger that they won't listen or maybe just don't care.  Anger.  We pay taxes.. have since we were 16 and probably will until we die. We have one child... only one.. and I think we have paid our dues.  J-man is a citizen of the United States of America and our society has decided that ALL children deserve a quality education. They are not allowed to fail. This is J-man's right.  They should feel ashamed, right to the core. 

And under all that Hope and Anger is Fear.  Fear about making the wrong decision.  Fear about defying 'authority'.  Fear about doing it all by ourselves... what an isolating, lonely feeling... How will we do what needs to happen for J-man?  Why can't they just love him as we do?  There is so much to love...

I was stuck by Hope, Anger, and Fear.

And amongst the chaos of this week... the lost Hope, the Anger, the Fear...  I read this post by my friend Ange at Life in the Pumpkin Shell.  The last line struck a chord in me so strong and clear it was like God himself whispering in my ear:

One gift allowed me by the spirits who guide me through...'Walk away when it feels wrong.'

And then, in a wonderful repost-response given to me by Ange about their experiences with their son  (who reminds us of J-man so clearly it is scary), I found solace and fellowship.  And Courage...

So while Hope, Anger, and Fear have failed me,
the Courage to walk away will save us all.

And it feels like we have shed the weight of the world.

Like we can breathe again, deep and easy.

It feels like we are free.

.

My Birthmas Present

I turn 40 on Wednesday. 

Forty.

4-Teeeee.

*sigh*

Anyhow, the greatest Hubby in the world and the greatest Grandma-Mumu  & Grandpa-Papa in the world got together and got me the coolest gift ever!

Yes, my very own iPad!

I had a hard week so they revealed it a little early.  I have been jonesing for an iPad for quite a while.  It just has so many cool features that we can totally use around here... surf the web from the couch, watch movies on a long car ride, play games, etc etc.  Yes, it is a toy.  But, to be honest, I don't have a lot of toys. Also, the iPad also offers A LOT for kids with special needs like my little J-man.  Shannon Des Roches Rosa and Robert Rummel-Hudson offer a great commentary on the impact of the iPad for kids with special needs.

So it is a toy I can feel pretty good about all around.  It is for me AND the J-man.  Guilt assuaged.

That is, if he could figure out how to use it..... Hmmmmm

J-man has shown limited interest in the computer up until now.  Recently he discovered the joys of YouTube, but just enjoyed watching and didn't show interest in trying to use the computer in any other way.  The idea of the mouse alluded him.  He just wasn't ready which is ok because he is only three and a half.

But what about the iPad? 

Allow me to present J-man's iPad skills. 

Game One:  My First Word



In this game, he moves jumbled letters on top of each letter in the word.  When the word is done, the graphic of the word "dances"

Game Two:  Talking Santa



A pure game.  You hit buttons to have Santa do different things (or have things happen to Santa).  Try to ignore the sociopathic joy he gets from assaulting Santa with a snowball, and notice how he follows my directions and shows shared enjoyment. 

At this point I have owned it about 12 hours. 

J-man's time to learn it:  5 minutes.

Persistence

I thought I might do another SNBH.  This Week's Theme:  What is a recent accomplishment that your child has made?

Anyone who follows me regularly knows the strides J-man has made recently.  I view most of his daily strides as major accomplishments, but I decided yesterday's story was worthy of this topic.
**************************************************************

The "guys"

I was parked at the kitchen table working on one of my least-favorite chores:  paying the bills. (Anyone with me on this one?)  J-man comes running into the kitchen and grabs my hand, pulling me out of the chair and into the dining area.  In his hand he was clutching three of his "guys":  Superman, Batman, and the Joker.(He loves his guys)  He looked me directly in the eye with this urgent need in his expression. 

J-man said to me, " aAAh iIm!"

aAAh iIm??  What the....?

"What honey?" I said.

" aAAh iIm!"  he said again, insistently.  Clutching his 'guys' in his hands, J-man rubbed his fists up and down on his chest, trying to sign what he was saying.  "aAAh iIm!"

I imitated his sounds and sign, showing him I was hearing him.

"I'm sorry hon. I don't understand" I said regretfully.

But he persisted trying to get me to understand.  He didn't quit.  He signed.  He forced his words out, even though his mommy didn't understand.  He hung in there.

I watched him, as frustrated as he was, looking for any clue that might help me figure out what he was trying to tell me.  I watched his signing, listened to his words, and looked at his hands clutching his 'guys'. And suddenly it hit me like a ton of bricks...

"Bath time?!?!"  I asked excitedly.  He glowed with relief and excitement, "aAAh iIm!" with the sign for bath.

Persistence.

Some time ago J-man went through a spurt of avoiding bath time.  He just wanted to play, and bath was just a rude interruption.  At that time, we decided to try and make a game of it by putting his "guys" (and he has a lot of guys) on different stairs going up to the second level bathroom, and then had him gathering them as he went up the stairs to the throw his 'guys' into the 'pool' (bath) to go swimming.  And he took to this like a fish to water (hehehe) and it has become a routine ever since.  His guys get a bath.  His guys go swimming, get washed and dried.  He has once again embraced bath time.

How fundamentally frustrating it must be for J-man.  To have these thoughts, these ideas, these words, stuck in his mind and in his throat.  To know that communication is important, to know that he can't do it well, and to know that we adults may... no, probably... miss what he is trying to say.  How does a three year old cope with that?

And yet, he persisted.  He persisted in spite of the fact I didn't understand, in spite of his best efforts, in spite of how very hard it was for him.  Yes, this time his Mommy figured it out, but in his world that is probably the exception more than the rule.  And still...

He persisted.

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

Tataway!

A scene from our day:

J-man brings me his coat and thrusts it into my hands. Now, when J-man brings me his coat that generally means he is bored and wants to go somewhere. 

So I said,  "You want to go?"

He said, "Goooo.   Caar!"  He signed it, just to make sure I got it.

I said "Okay, we can go. Where?"

J-man remained silent as he put his coat on.  I told him to get his shoes and socks, which he did.  As I was putting them on I asked him again, "Where go?"

He just looked at me and smiled. 

"Go Ice Cream?"I said. (This is the usual place we go when we need to Go)

"Nooooo" said J-man.

"Go park?", I said. (Oh please oh please please, not the park.  It is 20 degrees outside.)

"Nooooo", he said again, emphatically, with a slightly annoyed look on his face.  Really, Mommy, the park?  It is 20 degrees outside.

And then it dawned on me. 

"Target?"  I said.

"Ar-get??  Arr-get!!", he crowed.

"You want Toys?" I asked.

"Oys Oys Oys!!!" he exclaimed, grinning ear to ear.  Bouncing up and down. Fully satisfied at his ability to make his wishes known.

And off we went to Target.  When we arrived and settled with cart in hand, I asked, "Where go?"

"Tataway", he pointed emphatically toward the general area of the Toy aisle.  We meandered 'tataway'.  I took a (purposeful) wrong turn.  He grabs my hand and points again, "Go tataway!!  Oys!!".

I may have lost my way a few more times (ahem), but we eventually made it to the Toy aisle.  J-man directs me from lane to lane, carefully examining the toys.    I said "Small toy buddy", hoping it means something to him because let's face it, I don't wanna spend $50 on the Imaginex Dragon Castle, even though I know he has eyed it before.  But lucky for Mommy's pocketbook, he was content with a Playmobile Knight. 

And this scene, dear readers, would have never ever ever happened a few months ago.

Every few months I have this uncanny ability to totally panic.  It occurs to me that we aren't doing enough, or the right things, or enough of the right things.  I make calls.  I peruse the Internet examining my options for therapies or new techniques or some other new information that might help.  I worry and sweat and get myself all twisted up. 

And then J-man sets me back on course.

"Tataway!"

On "Getting It"

I rarely write about my job.  It's not that there isn't a plethora of material there.  Many times my work environment can put the 'D' in drama.  I just feel that this space is more about my parental journey rather than my professional one.  However, there are times when I become acutely aware of the bi-directional influence the personal and professional have on each other, and I guess this is one of those times.

Yesterday, my primary went home.

To clarify, a "primary" refers to a patient... in our case, a baby... with whom a nurse makes a commitment to work with throughout the patient's stay.  In essence, you are assigned that patient every time you work.  Now, in many places within a hospital, there is no need for such an arrangement.  Most hospital stays are meant to be short term and brief.  Indeed, insurance prefers it that way.  But the NICU is different.  Our babies will stay with us for weeks, often months at a time.  For many babies, this stay is marked with extreme critical needs and an ever-increasing series of complications.  Primary nursing is meant to give our babies some nurses that can provide consistency, an ability to maintain an 'arc of the story', and a means from which parents and other family members can develop a meaningful relationship with at least one consistent face.  Additionally, primary nurses tend to become strong advocates for both the patient and the family. Many times, a primary nurse becomes the patient's voice in a complex world.

We take it pretty seriously. 

I like to take primary patients, although I am not always willing to do so.  It is a major commitment.  You have to be willing to stay with that patient through discharge.  You have to be willing and able to work with the family.  You have to commit to whatever happens with that patient, and it can range from beautiful to tragic, sometimes in the same week.  So whenever I do take a primary patient, it is usually after a lot of thought and contemplation. 

Or, in the case of Baby F, I decided during my first 12 hours shift with him (I admitted him).  Sometimes you just gotta jump into the deep end of the pool, ya know?

Baby F was a micropremie, the smallest of the small and youngest of the young.  To give you some perspective, Baby F was born under 500 grams.  The can of Chunky Chicken Noodle soup next to me is 527 grams.  Yeah, that is small.  And he was young (gestationally speaking), skirting the edge of viability.  One third of babies born at his gestation today do not make it to discharge.  And of the ones that do, they often have major medical complications.  To primary a baby like F is setting yourself up for a long term gig.   And it was... Baby F stayed with us over 100 days.

But then, I got to have yesterday.  I got to see him leave with his loving parents, on minimal medical assistance and as far as we can tell today, his future looks very bright.  And I got to be a part of that.  I will, forever and ever, be a part of that family's story.  Years and years will pass, and he will grow up and be who he will be, and at major milestones (graduations, weddings, etc), I will be in some small way remembered.  I will be remembered as I remember exactly who came to J-man's delivery from our NICU (Miss L and Miss K), even though they were only there for 6 minutes... okay, maybe 7... as I remember every person who has worked with him, who has had some impact on our lives. They are a part of our story.  It makes me ever more aware of my responsibility and duty to these families.

I think being J-man's mom has made me ever more sensitive to the impact that I have on families.  I think I "get it" more than I did before.  Sometimes, that just means I know that I don't "get it" at all.  I judge a little less, have a little more compassion, and understand at least in some way the crushing weight that this experience can be for a family.  I am not sure that I could have gotten here without J-man...  I think one believes that they "know" what it is like or what they would do if it was them in that situation, but they don't  You never do.  You just can't. You just need to go through it to even begin to truly "get it". 

My Open Letter featured on The Thinking Person's Guide to Autism has gotten some amazing... I mean AMAZING... responses.  Two school districts from opposite ends of the country wanted to use it for teacher training. A hospital in Canada the same.  I have had many people repost, many emails of appreciation, and I have been a little shocked and deeply honored.  But as I look back, while I did write it as a parent of a special needs child, I think I also wrote it as a professional.  It was as much a letter to my old self, "pre-Jman", who maybe didn't quite appreciate my role in these families stories.  I didn't understand them.

But I think I "get it" now.

I hope I do.  Or at least I am trying harder.

SNBH Question of the Week

So, I have decided to join the fun with the Special Needs Blog Hop Question of the Week.  I have never done this before, so be gentle with me...



The Question:  Tell us a funny memory involving your child.

I am going to share two.  The first happened this summer.  I am not sure why this memory strikes me, but it is a great memory.  Our friends were visiting from out of state, and we were celebrating a birthday of one of their kids.  The whole group of us (house of 9 people!) were sitting around the table having birthday cake.  I wasn't sure if J-man would eat it.... he has issues with new food, even if it is yummy stuff like cake.  He has trust issues.  So, we gave him a small piece and figured what will be will be. 

Good food and good conversation were flowing  and to be honest, I was paying very little attention to J-man.   I would imagine he might have been trying to get my attention in his subtle, non-verbal way.  Or maybe not.  Who knows. 

Anyhoo, we were munching and talking when... out of the blue...  J-man exclaimed "CAKE!" and pointed directly at the cake.  For a split second the table fell completely silent, and I looked at his plate.  His cake was gone.

So, apparently, J-man likes cake.  And wanted more.  And got more, immediately. 

That is my first really clear memory of J-man doing a spontaneous verbal request.  It always makes me smile.

My second memory is really just a fun video from when J-man wasn't even one, and before I knew something was 'developmentally off' (although there was a seed of doubt).  It is right before Christmas, and he is laughing at a video.  I just love the sound of his laugh.



Now, a question for you all. I am curious... who are you? Except you, mom... I know you read. And a handful of my friends... but what about the rest of you? I would love to know who you are. If so inclined, drop me a line and tell me a little of your story.   Or just give a hey-ho in the comments! 

Bathtime Is Playtime

WARNING:  Three year old boy in bathtub.  No 'naughty parts' seen, but if you are a perv who gets off on watching a three year old in a bathtub, bugger off.

I just had to post this short video of J-man in the bathtub.  We are playing "the lion is chasing Buzz and Woody".  (You might wanna turn your sound down just a tinge, because it is very echo-y.  And my voice is obnoxious.)



Now, this is a pretty good example of the CP approach, and yet I fail miserably in one area:  Matching.  Clearly, I am overtalking him.  I really should have minimized my words and word combinations a lot more.   But he is keeping up with the action okay.  This is the first great example I could get of where he is at in his pretend and interactive play.  This is pretty typical for us... he can take it out one or two ideas, but it sort of stalls there.  But, given we had NO pretend play three months ago, I call it a win. 

The other part I love is how much he is watching my face for my reaction.  He is really enjoying my over-reaction to the lion.  And did you notice how he wanted to keep it going by telling me to have the dolls go "that-a-way".  Pretty darn cool. 

A Green Flag Parent in a Red Flag World

Last May, I posted an article written by Dr. MacDonald called Red Flags vs Green Flags.  I find this ironic and kinda funny because I had discovered this piece well before I knew anything about Dr MacDonald and Play to Talk/CP.  It had been posted on another site, and to be honest, it just spoke to me. 

I thought of it again this week after talking at length to a friend of mine dealing with some tough issues with her child.  She was very discouraged about the messages she was getting from people working with her child.  They were highly negative, and most certainly do not match her (or mine for that matter) perception of her child.  Whenever she talks about something that is new and positive, she seems to get the "Yeah, but..." response.  You know, it goes something like this...

"Yeah, but really he should be doing X, Y, and Z... and well, he is only at C, D, and E...(insert dismissive shake of the head)"

"Yeah, but he never does that at school... and really, he is too far behind his peers to catch up"

"Yeah, but .... (and then that weird look that says they clearly think you are in denial about how terribly, awfully disordered your child is and really you should just come to grips with their assessment of his skills)

The thing that just killed my friend (and me too, for that matter) was that it seemed to her that even suggesting that her child was making any progress as akin to her being in denial about how bad he was.  When she spoke about progress at home, or how he could do certain things in other environments like church or daycare, they doubted her.  She felt dismissed, like the progress she was seeing was not real because they didn't see it.  When you are a parent of a child with special needs, it can feel like you are bombarded with negative messages about how your child is lacking.... how they are "less than"... how they (and you) are failing.  It can make you feel alone and powerless and unsupported.

It is very hard to be a Green Flag parent in a Red Flag world.

So I posed this question to the Communicating Partners group:  How do you deal with the Red Flag people? You know, the ones who say "Yeah, but..." whenever you say something hopeful, or talk about amazing progress, etc etc... Who always seem to look at deficit instead of progress? Who just can't be positive, or must temper every positive thing with something negative? Like being hopeful and focused on the positive is a disease?

And Dr. MacDonald responded.  I felt like I had to share it.  Here is (in part) his message to us parents:

Believe in Yourselves More than Professionals!

I say further that you need to do what evaluators only rarely do-- and that is focus on what the child can do.  Professionals often seem to think that to justify their job they need to identify all kinds of mistakes your child makes.  I claim that your child does not make mistakes, they are developmental growth steps.  There are no mistakes, just practices for success.

Professionals would go much further with our children if they would take a developmental approach by identifying what the child can do and have him do more of that.  Stop putting yourself down because you have a child doing less than same-aged peers. That does not make him wrong, and it does not make you wrong.

How often do you feel wrong when someone accuses your child of being wrong???

Don't be blown away by negative evaluations any more than if someone said you have the wrong kind of car, or dress or house.  Be proud of what you have done for yourself.  That will help your child be proud of what he can do.  If he is not proud, he will do less and believe less in himself. (Attitude matters!*)

Realize your child is learning from you all the time and he is learning much more than what you say or try to teach him, he learns how to believe and think by watching you.

STOP BELIEVING PROFESSIONALS KNOW MORE THAN YOU DO ABOUT YOUR CHILD. THEY DO NOT.

In fact they cannot know who your child is and what he does and can do unless they watch him with you and get a thorough report on what he does at home.

Also, professionals are usually asking the wrong questions.  They seldom know much about early development and what children need to do before they're in school (and how to encourage it*).  Skills such as social play, imitation, turn taking, deliberate communication, initiating, responding. listening, and many others are seldom evaluated and yet they are the keys to learning and communicating.  Realize that you often buy into a system that is keeping your child down.  Start seeing how and when you are doing that, such as when you push your child to do things he is not ready for, making him avoid you and others by acting in ways he cannot try to do.

Be more focused on what your child can do and get him to do it more.  At the same time, focus on what you do when he is performing well  -  keep doing it.

Be sure he is your partner more than your student. 
And ask yourself: WHOSE CHILD IS HE OR SHE ANYWAY?


When was the last time a professional gave you a pep-talk like THAT?
I adore Dr. MacDonald.  Thank you!


* my comments based on other posts from Dr MacDonald

EE Ru EEEee

Happy Halloween Everyone!!

Ok, the day after.  But I have to tell you all about our Halloween night. 

So, as noted in the previous post, J-man had a choice between being Superman or Spiderman.  Now these options were picked by me because a) they were easy, b) they were cute, and c) they were easy.  I knew that J-man didn't really get the concept of Halloween, so I figured he wouldn't care.

Oh silly Mommy, how wrong you are.

The day before Halloween, we made a trek to Target for Halloween candy...thus guaranteeing that it would only be in my house for 24 hours before the big event and decreasing the likelihood of it ending up on my thighs (I failed, by the way.).  Once there, J-man took charge, commanding me to go "Tat Way" until I wove my way to the costume area.  Amongst the sea of sadly picked-over costumes, J-man found his Holy Grail:

Dash from The Incredibles

Sucker!!!

So, we were set for the Big Event.  Our neighborhood is CRAZY for Trick-or-Treating.  Some family several blocks away runs a hayride through the neighborhood, bringing kids from one area to another.  There can be 10+ kids on a trailer and as they arrive at our circle, they swarm like angry bees, running from one house to the next.  The neighbors go crazy with the decorations, from cute to spooky.  It is a Big Event here. 

Frankly, I didn't know how this would go.  He woke up from a late nap in a foul mood, which didn't bode well for the festivities.  But we donned the Dash costume and headed out, fully expecting to do maybe three houses before he had enough.



Spooooooky

Oh silly Mommy...

He LOVED it.  The first house was a bit scary because he had no idea what was going on.  There were kids everywhere dressed in costumes and running around, and he was a little intimidated.  But he really caught on quickly to what to do:  Ring the doorbell, hold out your bucket, and say Trick-or-Treat. 

Or as J-man says it:  EEE Ru EEEeee

Which he DID!!  Over and over again!  We must have done 15+ houses before we called it a night.  J-man would have kept going too!  My hubby and I were very pleased, and very surprised.  But I shouldn't have been... 

J-man is going to show us all!