And Off We Go...

Big Daddy and I are heading out for a long weekend away.  Without the J-man.

Our first long weekend away since the J-man was born. 

Allow me to do the math:  4 years, 2 months, and 26 days.

And I am so excited and so incredibly anxious!  Excited because... you know.... I am going AWAY.  Anxious because.... you know... I am going WITHOUT THE J-MAN.  And for anyone who has a kiddo like Mr J, you understand the completely messed-up conflicting feelings about leaving.

(even for just a long weekend)

He is staying with Grandma Mumu. 

They get along great.  They will have fun!

He will be fine.  Fine fine fine fine fine fine fine fine FINE.....

He will behave.  Behave behave behave behave behave....

He will hardly miss me.... oh, who am I kidding?  He freaks out when I do a 12 hour shift at work.  He WILL miss me. 

He will survive.  And so will Grandma Mumu. 

(I hope)

********************
This post was submitted for the S-O-S Best of the Best series on Anxiety published on May 15th, 2011.

Looking for Help with Research!

Hi all!

Just thought I would pass on an opportunity for you to help further research!  A doctoral student contacted me looking for parents to fill out his survey from parents with children on the spectrum.  From his survey:

The aim of this study was to develop improved diagnostic measures for individuals with Autism Spectrum Disorders (ASD). In particular, I am focusing on developing appropriate measures to assess for problems/challenges that may exist along with ASD.


If you have a child who has been diagnosed with ASD, please consider participating. 

The Link:  https://www.surveymonkey.com/s/ASDStudy

Gravity Pulls You In

I have been asked to participate in the Best of the Best Blogger Book Review and Giveaway!  Numerous bloggers are getting together and reviewing books that they have have particularly helpful and moving.  Please check out all of the wonderful reviews, and hopefully get yourself a free book!!

As you know, I do have a policy of reviewing materials.  So in the spirit of full disclosure, my choice for the Book Review is one in which I already have some personal connection with:  Gravity Pulls You In: Perspectives on Parenting Children on the Autism Spectrum (Eds: Kyra Anderson and Vicki Forman).  One of the editors, Vicki Forman, is a friend of mine and has written one of the best memoirs I have ever read, This Lovely Life.  I have previously reviewed it here.  So when this book came out I was fairly sure it would be brilliant. 

And it is.

Gravity Pulls You In is a series of hauntingly honest and poignant essays and poems reflecting the experiences of parents raising their children on the spectrum.  This is not an advice or treatment book.  This book will not necessarily be the "chicken soup for your soul". Nor is it a book of rants by disgruntled parents. Instead, these are carefully crafted and honest reflections that will touch you deeply.  Every time I read one of these pieces I grow a stone in my throat, my eyes mist, and my heart is squeezed rather painfully. Prepare to be moved.

I recommend a bottle of wine with this book.  Yes, the whole bottle. 

And in the spirit of the Best of the Best Blogger Book Review and Giveaway, I will draw a name from those who comment here (or drop me an email if you are shy) and that lucky person will get their very own copy of Gravity Pulls You In.  But you only have until April 30th to respond!!!

Cavities, Seizures, and Mommy Regret

J-man's latest (brief) visit to the dentist has revealed three cavities.  At least.  The dentist could only take a quick peek because J-man was in full freak-out mode when she tried to examine him.  But, in that quick look she saw three and is afraid there may be more. 

Sigh...

It kinda pisses me off because I made a point of asking her if we could get sealants for his teeth at our previous visit. Given his significant oral aversion and refusal to allow me to brush his teeth, I just knew we were setting ourselves up for cavity city.  He will brush his own teeth... sorta....  you know, as good as any orally-averted-four-year-old can.  But she said then that they don't typically do it on baby teeth...  which is both stupid and bogus.

Anyway, the best way to address this problem is to have J-man put under sedation and do a full exam with x-rays, fix the cavities, put on sealant (grrrrr!) and possibly put on caps to the back teeth (not sure we want to do that).  Clearly, sedation comes with some risks...  risks that are probably necessary if we are going to fix his teeth... and since we are doing it, we might as well think about what else might need to be done at the same time. You know, the biggest bang for our sedation buck. 

His tonsils are fine so no biggie there.  He has never had an ear infection so no tubes needed.  He is due for some immunizations so we will get that done while he is knocked out.  And I am looking into whether we could have an ABR (auditory brainstem response) hearing test done at the same time (also best under sedation).

But there is this little voice in the back of my head that is saying "have them place electrodes for an EEG....  have them do a 24 hour EEG...."

You see, when J-man was 2 1/2 yrs old, he had a sleep deprived EEG.  Basically, a sleep deprived EEG involved waking J-man up at 2am and keeping him awake until about 8am. Yeah, that was fun.... try it sometime. Then, at the hospital, they placed the electrodes on J-man for the EEG (yeah, that was a barrel of monkeys too), and he was allowed to sleep for about 45 minutes while they measured his brain activity.  The reason he had the EEG was to rule out seizure activity as a potential cause for his developmental delays.  And all signs from that EEG were normal.

But... there are three factors that nag on my brain....

First was the sleep-deprived EEG.  Typically, those types of EEGs are less reliable in detecting seizure activity purely because the window of time to measure brain activity is so short.  Being sleep-deprived is suppose to induce enough stress to spur on "seizure like" activity during the first round of the sleep cycle.  My problem is that it is such a small snapshot that the likelihood of missing some seizure activity is very broad.  And, given the trauma of actually going through the electrode application, I am not thrilled with the idea of re-doing it all for a 24 hr EEG.

The second issue is my recent reading about the increased incidence of seizures (particularly absence seizures) in children on "the spectrum".  It is highly correlated, and that has me concerned. If J-man was having absence seizures, it could greatly impact his ability to learn.  And absence seizures are highly treatable.  AND the typical onset of absence seizures is between the ages of 4-12 yrs old.

The third issue?   J-man has displayed a few of the very subtle signs of absence seizures. He has times of just staring off into space, usually for only 10-15 seconds.  He has these moments where he shakes his head like "no no no" out of context.  I thought he was thinking of something, but could it be a tic?  And he has these times where he is remarkably crabby... not tantruming, just out of sorts. Of course, those symptoms could also be related to his developmental delay, or his auditory processing, or his lack of social orientation, or....   just being J-man. 

But there is this little mommy-voice that is just freaking out a smidge.

Now, Big Daddy will not approve of doing another EEG based on such flimsy evidence.  It was very traumatic for J-man to get those electrodes on, and he is almost two years older and much stronger.  And it is quite likely that the doctors wouldn't want to do it after sedation anyway, so even thinking about it for the whole bang-for-your-buck sedation event is maybe just wishful thinking on my part.

But I can't suppress this feeling that this would be our best chance to ease my mind.  Or not.

Classic J-man: Part Two

(Wanna read part one?  Click here)

In my latest attempt at winning the Meanest-Mom-of-the Year award, we left the evaluation and went straight to speech therapy.  And then... the icing on the cake.... J-man had a dentist appointment (oh and he has at least 3 cavities, which means a lot of future joy for us).  Yes, I think the Meanest Mom award is in the bag!!!

To make it up to him, I took him to Pump It Up for an Autism Speaks fundraiser benefit. 

If you have never heard of Pump It Up, it is pretty darn cool.  "Bouncey" houses on a grand scale, big enough for mommy and daddy.  Our local Pump It up offers a monthly "Sensory Night" for special needs kids and their families and it is wonderful.  There is nothing like being able to take your child somewhere and know... on some level... everyone there 'gets it'.  And J-man loves... LOVES... it there.  The Great Open Jump had a special early time set aside just for special needs kiddos, and so I figured we would go for about an hour early on in the evening and bounce with the boy.

When we arrived, I was quite surprised to find that there was only one other child there with his mom,  a little four year old boy whom I'll call P.  Other than them, we had run of the house.  P was absolutely thrilled we were there.  He has high functioning autism and was very verbal and happy that a 'friend' had arrived to play with him.  I cringed a little.  Given the events of the day, I wasn't sure if J-man would give him the time of day.  Or even glance his way. 

I couldn't have been more wrong.

After a little warm up time, the boys were chasing each other.  Each boy was pulling the other in one direction or another.  At one point, J-man gestured to P and said (in a demanding voice) "down!".  Initially I thought he was trying to get the boy off a perch that J-man had claimed as his own, but then I realized he wanted P down so they could keep playing their chase game.  Amazing!

Up and down the inflatable slide.

Cruising around in kiddy cars.

Wrestling around with big laughter.

It was interactive and joyful for a whole hour.

I rarely get to see J-man with his peers.  While he goes to J&J, I don't get to observe him.  And I figure that he probably doesn't engage much with them, especially with little assistance to foster relationships.  The demands of the classroom and on his ability to engage are probably too great.  But with this boy, in a physical activity where there were no expectations or high demands on his language skills, he glowed. 

Consistently inconsistent.

Classic J-man.

Classic J-man: Part One

J-man can show many faces in a single day and is heavily influenced by the approach that people take with him.  Explaining that to people who don't know him well can be difficult.  When I try and explain who he is and how he functions, well.... (it just doesn't matter if they are a 'expert')...  there is this sense that they don't believe me.  Or trust my instincts... my understanding... of what makes him tick.

So when my very words were verified by the J-man during his evaluation yesterday,  it was a little bittersweet.

Yesterday J-man had a "full psychological evaluation", including an IQ test.  You may be asking yourself:  Err, why?? 

Well.... we are considering enrolling J-man in a new specialized preschool program that has special needs children included.  If we decide to do it, it will be a trial... we love J&J, but we would like more support for J-man's language development.  One of the requirements is a full evaluation including an IQ test (remind me someday to give you my rant on IQ testing in language impaired/socially delayed/autism spectrum kiddos).

And, of course, I knew J-man would not comply with an IQ test.  Oh no, not my boy...  but you know, they aren't gonna listen to me.  So we went ahead with the full knowledge that this testing would have nothing to do with his abilities.  And ...hmmm, about 5 minutes in the Dr O knew it too.  Dr O was a very mild mannered, gentle man, and I don't think J-man hated him.  But (for those of you who follow J-man's story) J-man does not respond well to new adults.  I knew after the first time Dr O addressed J-man that he was not going to get J-man at his best.  It probably didn't help that the first sentance he uttered to J-man had 9 words in it (I counted).

The next phase of the evaluation was the Autism Diagnostic Observation Schedule (ADOS) .  I have really kinda avoided having the ADOS done up until this point.  You might find that strange, but really... I have had good reasons!  You see, in my former life (before J-man and Big Daddy), I used to work as a child fellow in an autism clinic and helped administer the ADOS on a regular basis.  Ironic, I know.  Anyway, one of the downsides to the ADOS is its heavy use of language, especially receptive language skills.  So a child with significant challenges in language are already at a disadvantage in the ADOS.

Anywoo...

Since I was very familiar with the test, it was hard to me to not... well, put my oar in.  I held back as much as possible.  Really, I did.  It became clear fairly early on that J-man was not remotely interested in doing anything Dr O wanted him to.  He wanted to get J-man to play with cars.... J-man wanted the Legos on the shelf.  He blew bubbles and a balloon up.... usual big fun for the J-man... he was only mildly interested. 

J-man was in "I don't want to do what you want me to do because you want me to do it" mode. 

One element of the ADOS is having a "birthday party for the doll".  There is a playdough birthday cake, a plate, a fork, a cup, birthday candles, and (of course) a doll.  The administrator has the child help make the cake, put the candles in, pretend to light them, blow them out, sing happy birthday, and then feed the baby.  Or at least some participation in the play activity.  The purpose of this exercise is to examine the child's social engagement, social play, and pretend or imaginative play.

Dr O announced the birthday party.  J-man barely glanced up.  Dr O got out the playdough which peaked J-man's interest.  He joined Dr O at the table.  Dr O suggested J-man put in the candles in the playdough cake, which he did.  He encouraged J-man to blow out the candles.  J-man sorta, kinda did it.  Dr O started to sing Happy Birthday.  J-man said "No no no no no no!!".  He isn't a big fan of singing. 

And I thought it was just me...

Dr O then tried to get J-man to feed the baby.  J-man headed for the other side of the room and started to play with legos. Sigh....

Dr O asked me if J-man ever shows imaginative or pretend play.  I said yes, but it was still emerging.  But, I said, this whole "event" is more about J-man not doing what we want him to do, not because he doesn't know how to pretend or exhibit pretend play.  I told him that J-man does readily engage in social learning, but not social engagement. I could see on Dr O's face that he wasn't sure about my assessment of the situation....  mommy in denial, perhaps?

And then... get this.... it is fricken classic!!

As we are discussing this, J-man ventures over to the birthday party table.  He picks up the folk, puts cake on it, and feeds the baby.  Starts to make smacking noises... yum yum yum.  Gives the baby a drink from the cup and makes gulping noises.  By this time, Dr O's jaw is on the floor.  He hands J-man a blanket and J-man puts it on the baby and says "nigh nigh".  And then he was off... across the room... back to the legos.

Classic J-man.

Which is what I said to Dr O, and I could tell that my words were now carrying much more weight. 

We should get the evaluation back in a couple of weeks, but I am pretty sure he will be diagnosed with autism or PDD-NOS.  I know from his performance on the ADOS, he was at his worst.  So, we shall see...

But do you think the story is over???  Oh no... stay tuned for part 2... coming soon!

Tubby Time and Superman

I wanted to share a little video I shot this evening of J-man and I playing while he is in the tub. 

Now, as you watch, you will hear J-man doing a lot of talking.  Listen carefully.  The vast majority of it is unintelligible.  But he is saying all of the names of the superheroes, and while I can understand them, you probably can only get a few.  The list is as follows:  Aqua Lad, Aqua man, Superman, Red Tornado, Batman, Robin, and Kid Flash.






I am working on balancing and matching him in our play, and I think I am fairly successful.  Certainly, he seems to be enjoying it!

Manipulation, thy name is J-man

Tonight, like most nights, I put J-man down for bed. 

I crawled in with him and read him two stories.  Okay, in truth, it was the same story twice:  Going Bananas (a Super Friends book).  But only because he wanted it twice.  Now, J-man has developed this quirky habit of bringing one of his toys (or sometimes several of them) to bed with him.  And not the plush, snugly kind.  Nope... hard toys like airplanes, evil robots, or pirate boats.  Tonight was no exception, with his large WWII Imaginix warplane in hand.  After the second reading of Going Bananas, I promptly declared "nigh-night" and turned the light off.  Most nights I lay with him for a while to get him settled.

And (as is his new habit) J-man promptly grabbed my hand, lead it toward the light, and said "Light on?!"

"No no... light off.  Nigh-night", I replied (as I do every night).

We do this a few times and then he quiets down and (I believe) starts to fall asleep.  Ten minutes go by, and just as I am about to leave, J-man turns over, grabs my hand again and says "Tory??"

'Tory?'  I wonder.  What the heck is he talking about?  He repeats it several times and leads my hand (again) to the light.  And suddenly it dawns on me:  Story! 

Are you telling me he is asking for another story???  Are you serious??  So I turned the light on and said "Do you want another story???"  He said 'tory" again and I picked up another book and started to read (this time, Thomas the Tank Engine)...

... and I was promptly ignored as he started to play with his airplane.

Sucker!!

The little bugger KNEW that if he asked for another story I would turn the light on.  Manipulative little bugger!  Clever, too.

Stumped

I confess...

... I have a relatively arrogant attitude about my ability to handle/figure out/strategize issues surrounding the J-man.  Now, that doesn't mean I am always right...  or that I have any of the right answers.... or that I do any of it right.....  but I do have an unparalleled faith in my ability to do something.  I am a researching fiend. I over-think everything to the Nth degree.  And I can and will make some decision and then go forth and (for ill or good) confidently set forth on a path...

...except now.

I am paralyzed with indecision.  I am mystified with what to do.  I don't even really know how to start, where to start, and if to start.

And what has me in such a twisted state??

*sigh*

Potty training.  Toilet learning.  Dumping the diaper.  I'm a Big Kid now...

I hate the toilet.  Hate it. 

Yes, yes.  J-man is not potty trained.  Not even close.  Not even in the same zip code.  In fact, dare I say he is actually repelled by the idea of even sitting on the toilet??  I promise you...  J-man doesn't give a rat's *ss about being a Big Kid. 

Now, don't get me wrong:  I have done my homework.  I have now read three books on potty training, one of which even pertained to special needs kids.  I have read a number of websites, talked to numerous friends, and even watched a DVD on the topic.  I have purchased two potty chairs and two kid sized toilet seats.  We own Elmo's Potty Time.  Today I was pursuing Amazon.com to find a potty doll and mini potty chair for demos (even though I think it would be a waste of time/money... because unless the doll is Batman or Superman, he isn't going to care if it pees in the potty).  We even decorated the toilet area just for the J-man:

(He loves it.  Still doesn't mean he will sit on the toilet)

But I just can't pull the trigger on actually starting the process.

In part because I don't even know how to begin with him...

You see... while he likes stickers and M&Ms, he doesn't love them enough to actually sit on a toilet and try and pee for one.  And earning a sticker on a chart isn't exactly exciting for him.  Bigger presents might... might.... work in a very isolated "get him to sit there for 30 seconds" kind of way, but overall is impractical in the long run.  He isn't overly excited about praise from us.... or being like the other kids.... and diapers just don't bother him.  At all.  And while I do think that he has a basic understanding of the whole "potty" thing, it is hard to know because he so completely wants nothing to do with it that I can't really tell if he gets it or not.

And maybe he isn't ready...

.... but he is FOUR.

Four and not even started down the path to being potty trained. 

And I am at a complete loss for what to do now!!!  I feel like waiting is a bad idea...but failing seems like a worse idea.... and how to do it is a complete mystery to me  (potty parties vs scheduled pee-time vs naked baby vs sticker charts vs cold-turkey-on-diapers vs etc etc etc etc etc).

ARRRGHHGHHH!!!!!!!!!!!

In the next couple of months I will have a lot of time to actually devote to this (going through a significant reduction in work hours a la partial layoff... yah me), so I feel this THIS IS IT.  Time to do it.  The universe has spoken. 

But J-man isn't listening (nothing new there) and I don't know how to get through.  Or even get unstuck.

Just for Fun

J-man and I had a little playtime today and made up our own version of bowling. 

I don't think Superboy, Astroboy, giant Gorilla-man, and the Transformers minded.... Much!

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.