A Different Kind of Valentine's Day

My Valentines
Photo from 2009

I sort of forgot it was Valentine's Day.  I find that odd, as I did remember to bring Valentine's cards for J-man to hand out to the other kids at his program.  Made a point, in fact, to go back into the house and get them before we left.  But at a late afternoon lunch with Big Daddy, he said ... sorta as a side note..."oh Happy Valentine's Day".  And I went "yeah... I kinda forgot.  There is a card for you in the drawer at home....".  And we both wrinkled our noses and laughed.

We aren't anti-Valentine's Day.  While there is plenty of reason to think Valentine's Day is just this made-up-marketing-buy-candy-and-jewelry-holiday, I also see nothing wrong with celebrating love and romance.  Taking one day out of the year to just be sweet to each other.  It's cool with me.  We just didn't really do that this year.  This year seemed to be a "we love each other everyday" kind of year, with no special pressure one way or another to somehow prove it today.

So instead of roses and romance, how did I spend my day?

Well, last night our Miss Dolly had to go in for emergency surgery.  She had an uterine infection, and it needed immediate care.  I spent pretty much the entire evening at the vet with her, getting home after midnight and getting up far too early this morning with a very cranky J-man.  Big Daddy fetched a very tired and sad little dog home while I delivered J-man to school.  Cranky.  Then I spent about an hour in a meeting with J-man's OT, discussing his latest evaluation and new plan of OT action. It involves pencils and fine motor skills and feeding.   Slow and steady wins the race, right?

After the rather productive OT meeting, I embarked on my newest folly of epic proportions  project.  Somehow... and I am still not exactly sure how this happened... I got suckered talked into helping spearhead a group that is trying to get insurance coverage mandated for individuals with autism in my state.  Right now 29 states have some level of mandated coverage...  and Minnesota is not one of them.  What this means is that very few private insurers will pay for any therapy or services for autism (ABA, Speech, OT, whatever is needed), and that most families have to turn to the state Medical Assistance plans to get any coverage whatsoever.  And that coverage is extremely difficult to obtain...  lots of hoops, lots of hoops.  It is a dicey situation, and one in which I want to help rectify.  And now, suddenly, I am in this position to help recruit and organize people to write, call, and visit their legislators at the Capitol to try and get some legislation passed and policies changed.  

Dude, I am just a mom!  

Here I am with this little team of people, starting a Facebook group, making up a website, having phone conference calls and today...  today I went to the Capitol and had my very first meeting with my Senator.  I told him our story and showed him videos of J-man's progress.  Talked about the issues specific to us right now.  He asked questions.  I answered some of them... failed some... and promised to get back to him on those things I could not answer. 

Dude, I am just a MOM!

But here is the thing...  even though I believe that 'politically' he was not one to likely support issues like public insurance or putting mandates on private companies or etc etc etc... you know the drill... when he saw the changes in J-man on video! How utterly amazing he is!  When it was there, in his face, and I said to him :  we are the lucky ones.  We get to have this because my employer is knowledgeable and understands its importance.  There are so very many who DO NOT GET EVEN A CHANCE to see if therapy could help them....

I know it made an impression.  I could see it in his eyes.  I think that when this issue comes up again for him, he will not disregard it or shrug it off. He will remember J-man, the little boy in the video, and he will spend a little time learning more and being open to the issues.  And maybe... just maybe... help be part of a real solution.  That is the power of telling your story.

So I guess that is why I got suckered talked into doing this crazy stuff.  Because in the end, if I am not part of the solution, who will be?  I might be 'just a mom', but I am J-man's mom. 

And J-man matters.  

What No One Ever Told Me

You know....

... when you dream about having kids there are many things that you never think of.

You know you won't get a lot of sleep. You will probably be a little poorer in the wallet (but richer in the heart, of course).   Your relationship with your spouse will become different.  Your time will not be your own.  And of course, you know that you will change.

But there are some things... some specific things... that just never occurred to me.  Believe it or not, it wasn't autism.  That actually did occur to me.  Heck, I am an NICU nurse with multiple degrees in developmental psychology...  I am sure you can't even begin to guess the number of different things that did occur to me.   I promise you... I over thought the whole thing.

But boy, I missed some stuff.

Like Power Rangers.

Did you know there are 17 different Power Ranger series?  Not shows.... series!  Did you also know that you can get all of them on Netflix streaming?  Yes, you can.  And did you know that... if you watch them often enough..you might actually begin to rate your favorites?  Become involved in plot lines?  Slowly see your brain cells whittled down to the point where you actually keep watching it even when the kid has left the room?

So tonight I was hanging out with the J-man watching the newest series he has discovered (Power Rangers Wild Force), when a thought crossed my mind.

'Hey', I thought, ' I wonder if any of these actors ever did anything else after they were a Power Ranger?  I mean, all those Disney kids get contracts to eventually be in some movie... but the Power Rangers?  I don't think I have seen any of them go on to fame and fortune.  Is being a Power Ranger the kiss of death for one's acting career?'

I couldn't get this thought out of my head.  Big Daddy said "Google it", so I did.

Did you know that Wikipedia has an exhausting source of information on the Power Rangers?  And every Power Ranger actor there has been?  I found myself doing research about what other shows the Power Rangers actors have done outside of the Power Rangers domain.  I stuck mostly to my favorite series, Power Rangers Jungle Fury.

(Yes, I have a favorite series.  Don't judge!)

What I learned was that most of them went on to do other kids shows or some more B-rated stuff.  You know, the "straight to video" stuff.  But then, I discovered that my favorite Power Ranger,

(Yes, I have a favorite.  Weep for me)

Wolf Ranger RJ... aka David de Lautour..  is in the new Fox series Touch.  Which is coincidentally a show about an autistic child whose ability to see patterns gives him some kind of superhuman ability to predict the future. I haven't seen the show yet, so I have no idea if it is any good.  Anyhow...

And I feel like I have come full circle.

Then I realize I have spent a good chunk of time cruising the Internet looking up the career paths of Power Ranger Jungle Fury actors, and know that I really need a life.

Seriously.

Lord help me.

The Nature of Keyboard-ness

This is a piano.  

Wait...or is it a keyboard?

Or is this a keyboard?

What makes a piano a piano?  What makes a keyboard a keyboard? 

What gives something keyboard-ness?  Or piano-ness?

Pianos are:

* Often, but not always, made of wood.

* Tend to have legs, but not always.

* Have keys, black and white.

* Those keys make sounds and music.

In contrast, keyboards:

* Tend to be electronic.

* Have keys, but can have keys with letters, numbers, symbols, and or be black and white.

* Can be used to make sounds, play video games, amuse mommy on the Internet, make daddy be really serious on the phone or make music just like a piano.

So which word more accurately describes this object?  

One of the things I hate about ABA is that they seem to be as stuck and rigid in their protocols as some of the kids they are suppose to treat.   So, a little background on his program…

J-man is in an Applied Behavior Analysis-Verbal Behavior program with a "natural environment" component to it.  That means he spends a small portion of his day doing "table tasks" (i.e. discrete trial stuff) and the larger portion of his day playing in the natural environment and putting those skills to work. There are some benefits to discrete trial stuff, but I often have huge issues with it.  Indeed, I have been struggling with a love-hate relationship with ABA-VB.  Don't worry, I am working on a blog post... heck, probably a series.... about the pros and cons of ABA-VB.  But that is a major project... and I just want to vent about this one pet peeve.  Consider it a taste test of some future blogging moments.

Every day J-man has a little written note that comes home with him that documents what he did that day, things he is accomplishing in his program, and what he is still working on (or struggling with). 

 Lately, he has been stuck on the word "keyboard".  So here is the "problem" (and I use that term loosely).

During his 'table time' (ITT, or discrete trial time), he goes through various exercises that are fairly rote, not terribly interactive, and bent on teaching simple skills like labeling objects.  J-man typically kicks ass on all these tasks.  We are often told he masters tasks very fast, sometimes within a day or two of being introduced a task.  

He really isn't there because he can't learn, people.

Anyway, the last week or so we have been getting updates saying that he is getting stuck on the word "keyboard", and could we practice labeling it at home.  Our therapists explain that they show him a picture like this:

And instead of saying "keyboard", he says "piano".

And of course, because the curriculum calls it a keyboard, they have to get him to call it a keyboard.

Are you kidding me????

One of our (sweetest) therapists explained that if it was in the "natural environment" (NET), they would accept piano.  Well, of course they would!!!  Because in the real world if I called this a piano, you would probably agree with me.  In fact, you may even call it a piano too.  It may not even occur to you that it is also a keyboard because let's face it:

THIS is a keyboard for most of us.

This illustrates one of my biggest pet peeves about ABA.  There isn't an allowance for creative or critical thinking.  Piano doesn't count because it is during "table time"... and the curriculum says "keyboard"... he has to say keyboard to show he knows what it is.  

Are you fucking kidding me????

And at what stage, exactly, should a child developmentally be able to make this distinction?  Do they actually know this? And why exactly is it important??  It wasn't like he called it a flute, for crying out loud.  Or a pickle.  Jeeezz...

The meaning of words (semantics) is a language skill that develops over the first 10 years of  life.  The ability to understand that one object can have multiple names, and that those names are not always stand alone in the what they can mean, develops over time...and speech-language pathologists don’t even test for this skill until a child is over the age of 5.  So developmentally, the fact that J-man is selecting to use a word that frankly... in my opinion... is a more accurate description of the functionality of this object and is less confusing than the term keyboard to me seems.... I don't know... extremely appropriate.

But then what the hell do I know?

I am just a mom, right?

The Reason I Have a Headache

The following are excerpts of conversations had with J-man over the course of the day.  See if you can detect a theme.


Me:  Wanna go potty?
J-man:  No way!

Me:  Want some raisin bread?
J-man:  No way!

Me:  Let's put on your shoes and go see Mumu.
J-man:  No way!

(at the Walk for Autism Speaks today)

Me:  Let's go back and see the giant frog (a character he loved)...
J-man:  No way!

Me:  Want a cookie?
J-man: No way!

Me:  Time to find Daddy.  We are going this way...
J-man:  No way!

Me:  Time to eat!
J-man: No way!

Me:  Let's play cars...
J-man:  No way!

Me:  Let's watch a movie..
J-man:  No way!

Me:  Let's pray for world peace and all the chocolate we can eat...
J-man:  No way!!!

Me:  Time for bed!
J-man:  No way!
Me:  Oh, most definitely, YES way!

Okay, now, this just isn't FAIR!

Glasses????

Are you fricken kidding me???

I took J-man to the pediatric opthamologist today.  His vision is perfect.  PERFECT!  But... of course... there is a problem.  His right eye turns in when he looks at things in close range.  The doctor said that if that isn't corrected, he will lose vision in that right eye over time.

Great.  Just fricken great!

Apparently the fix is glasses.  Or surgery.  And clearly, glasses are the first choice for the doctor.

I am not so sure.

Let me just say upfront that this rather innocuous event has just devastated me.  In the grand scheme of things, this isn't that big of a deal.  Right?  Right??  But it feels very 'salt in the wound'-like. I mean, come on.... can't we catch a break on something??? Of course, I reflect back on the trauma of my own glasses-filled childhood....



Circa 1989
No wonder I couldn't get a date.


... and I think about my baby boy's beautiful eyes behind glasses and wanna weep...


Can you imagine glasses
covering these baby blues??


But what I think has me most....twisted up... is HOW AM I SUPPOSE TO GET HIM TO WEAR GLASSES?????  Cripes, I can't get him to sit... fully clothed... on a potty chair.  I can't get him to try any new food, ever.  I can't help him brush his teeth. 

So how am I suppose to get him to wear glasses????

Pity Party, Table for One

Welcome to my Pity Party. 

Feel free to pull up a chair.  However it is BYOB (bring your own bitchin').

I have heard some people don't believe in pity parties.  Well, bully for you.  However, I am human and I feel the need to rage against the universe and bitch a bit.  So if this ain't your cup of tea, I will not be offended.  I'll just drink more wine.

And now... without further ado...  a list of Things I Hate (in no particular order of hated-ness)

*  I hate that when I am driving home with J-man from his new program, there is no conversation.  It is a long car ride and there is no response to "what did you do today?".  He can't tell me if he had fun, if he likes his teachers or other kids in the class.  There is just silence.  Except, of course, for the immediate request for ice cream that comes from the back.... "ie-eam!  ie-eam!!".  And that leads to....

*  I hate that I buy ice cream for J-man every day because he asks for it.  But it is the only thing he says.  So I can't seem to help myself.  And no doubt his future obesity will be my fault. 

* I hate that every stinking thing I read about feeding my kid makes me feel even more guilty, helpless and worthless as a parent. So thanks for that, a**hats!


*  I hate that J-man has such a narrow range of food interests and there doesn't seem to be anything I can do about it.  And yes, you could say that I should just not give him anything but healthy food and he will eventually eat.  But you don't know J-man....  he very well might starve himself.  Seriously.

*  I hate that I have zero glimpse into the future for J-man.  None.  Not even the illusion of what the future will be for J-man.  Should we save for college?  No idea.  Should we plan on him living with us for the rest of his life?  Couldn't tell ya.  Will he ever have friends?  Your guess is as good as mine.  Will he even care?  I'm going to say yes, but can I even be sure of that?  The answer is no.

*  I hate that I have to fight to get J-man to even do basic crap... like brushing his teeth.  Or use the toilet.  Or ride a trike.  Or have a friend. 

*  I hate that my own illusions of human goodness have been shattered.  And not by Watergate, or the fact it seems like every male politician seems to have a problem keeping Mr Willy-Winky in his pants, or that Wall Street seems hell-bent on proving that they have zero ethics or morals at all.  While all these things definitely erode at one's confidence in humankind, I have found myself more personally violated by the events with the school district this last year.  That the people who are suppose to help don't.   That I can't trust the system that I should be able to trust.  That in the end we really are alone in all this. 

* I hate that nothing is ever normal and it appears it never will be. And yes, normal is boring.  I don't care. 

* I hate that everything is just so f*&%ing hard. 

What it is like...

... to watch a movie with J-man.  The action really gets started at about 1 minute and 30 seconds, give or take.



That phrase making your ears bleed?  "More puppieeee (movie)"

Playing Hookie from IEP Season



(Check out this very cool site and buy their stuff. 
Or at least just check it out!
http://theparentside.blogspot.com/ )


This year, I am missing IEP Season. 

Actually, I am not exactly missing it.  IEP Season, that is.  I am not missing it AT ALL.

It is like I am suppose to be at an all-day staff meeting with a boss who can either be sweet as pie or a complete prick.  Who cuts my budget.  Wants me to work Saturdays.  And moves my desk into the basement.  And takes my red stapler.

And instead, I took a mental health day.  I called in and am frolicking at the beach.  Or going shopping.  Or doing yard work.  Or having painful dental work.  You know, something better than the anticipatory soul crushing anxiety and emasculating experience of IEP meetings. 

Not that I am bitter or anything.

I know my reprieve is probably short-lived. Unless I homeschool, I am pretty much doomed to have to enter the IEP arena again.  I will have to go back on my meds, endure the stress-induced ulcers and migraine headaches, and pray pray pray that no one breaks my baby boy. 

But until that day comes, I am going to bask in the sun with my son.  Make the decisions that are right for our family... our son... without condescending "we know better than you" attitudes.  Enjoy the company of professionals whose first priority is the J-man... as it should be. 

Bliss!

Some Things Are Not DIY

J-man hates to have his hair cut.

HATES. IT.

Usually it involves crying and tears and sobs and a nervous hairdresser doing a scissor cut.  No clippers, thank you very much.  So I tend to put it off...

...and off.... and off....

And this time we decided that maybe we could just try and do a buzz cut with the clippers at home.  Maybe, just maybe, having Mommy and Daddy doing it in the comfort of his own home might work for the J-man. 

Again, as so many times before, Mommy was so, so wrong.

How Bad It Got :

Just call me Shaggy

And Our First Attempt (before he freaked)

Our very sad asymmetrical back buzz cut



Because we know when we are licked.... and when we don't have a clue what we are doing... we decided that the professionals could earn their money (and a hefty tip) to fix our screw-up and deal with our little J-man.  And let me just say... thank goodness she went SHORT.

A little more of a short-and-tight look

Note to self.....some things to never DIY:

           1. Heart Surgery
           2. Dental Work
           3. Cutting J-man's Hair

Melt Down Man

I would love to say that this is the angelic face that we have embraced this week.

So sweet....  so innocent.... so lovable...

But alas, the J-man has been more like this:

GROWL

Still cute and lovable, for sure, but more prickles and thorns than any rose bush.  J-man has erupted into a full-fledged control freak with superhuman capabilities to meltdown.  If melting down was a superpower, he would be wearing a cape and a MDM symbol of his chest.  Melt Down Man, capable of exhausting his parents in one single tantrum!!!  He has driven me to make emergency phone calls to my special-needs-momma-posse for advice and help.

I got some good advice, and we have started implementing it today.  No miracles, alas, but we are gonna commit to setting some bigger boundaries and consequences.  An consistent approach to his overwhelming emotional upsets. 

You know, that whole "parenting" thing. 

So Happy Mother's Day to all those mommies and mommy-helpers out there. 

Say a prayer or cross your fingers that I make it through this particular level of mommie-h-e-l-l.

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

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

Everyone Pays the Piper

Yesterday we came home from our long weekend away. 

We had a great time.  A great time that was made even greater by the fact that everything appeared to go wonderfully with J-man and Grandma Mumu.  Of course, I doubt Grandma Mumu would tell us if it didn't go well... but based on the condition of things when we got home, I believe it probably did go quite well.

HOORAY!

But, my friends, everyone has to pay the piper his due.

And oh, we are paying....  we are paying...

We have had no less than four complete and total J-man meltdowns since yesterday evening.  For our normally mild-mannered boy, that is impressive. 

Meltdown #1:  Pajama Bottoms of Doom

We arrived home to smiles and excitement and clingy happiness. All was well as the afternoon turned into evening.  We managed to get bath done (early) without incident, changed into pajamas, and then had dinner.  J-man's dessert was fruit pudding.  And that was the beginning of the end.

He spilled the pudding on his pajama bottoms.  And not just a little spill...  almost-the-whole-jar spill.  He was a little upset, but didn't too phased by losing his dessert.  However, changing the pajama bottoms???  Well, that was a disaster of epic proportions!  As we hand-washed the bottoms (since he was already in complete meltdown mode), he hysterically 'demanded' them.  Grabbed them and tried to put them on (soaking wet).  As the bottoms were drying, huge choking sobs while he 'circled' the dryer. 

It wasn't pretty.

Meltdown #2:  Diaper of Doom

Changing a diaper this afternoon.  J-man was so pissed off at the idea that he literally went into the trashcan, took out the dirty diaper and tried put it back on. Enough said.

Meltdown #3:  Just Obey Me, Dammit!

J-man lost it when Mommy wouldn't hang upside-down from our inversion table for an undetermined amount of time like he wanted.  When I left the room, I was berated with chants of  "no stop no stop no stop!!!"... which eventually transitioned into ....

Meltdown #4 :  Bedtime of Doom

Let's just say that he has gone to bed, sans pajamas.

Whew.

Big Daddy is concerned that J-man was like this with Grandma Mumu.  Maybe.  However I think that J-man was holding it together while we were gone, but now that we are home he now can have the complete breakdown he needs to have.  It is like his frustration/anxiety reserves are completely used up, and he has nowhere to go but into meltdown mode.  I kinda knew this might be coming.  I am trying to take the stance of total patience, which is only possible because I did have a long weekend away.  It is clearly apparent when J-man has gone beyond throwing a temper tantrum and into meltdown-la-la-land, and when I need to go from limit setting to calming down and comforting. 

So here we are, paying the piper.  Here's hoping the bill isn't too high.

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

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.

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!

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.

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.

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.

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.

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.