Puppy Love

Here is a sentence I never ever really thought I would say:

I want a dog. 

It isn't that I am not a 'dog person'.  I like dogs.  But I never really thought I would actually 'desire' a dog.  But I do.  I want a dog. Really! There are many reasons I want a dog (the snuggle factor, man's best friend, the unconditional love, substitute baby factor, etc etc), but one central reason is that I have seen how J-man reacts with a dog. 

We had a Pet Day at J-man's program the last week.  There were assist dogs there, as well as other people's family pets.  J-man has always shown some interest in dogs from a distance, but up close and personal?  Well, he got a little scared.  So we went to Pet Day thinking that exposing him to some dogs in a controlled setting might help. 




Puuuppppy  Luuucy!

 J-man loved it!  He especially fell in love with the little lady named Lucy.  Puppy Lucy, Puppy Lucy.  J-man squealed, giggled, and (playfully) chased after the dog.  He adored it when Puppy Lucy gave him 'kisses" and then proceeded to make puckered 'smack smack' noises to her to try and get more.  He cried and cried when we went home.

"Puppppppy  Luuuuucccyy"

Now he brings his stuffed dog everywhere.  And I mean everywhere... to therapy, to Target, etc.  He makes it give him 'kisses'.  He sleeps with it.  And when he was with Puppy Lucy he was soooo engaged.  My gut just says that he would do great with the right dog.

But I am the only one.  Big Daddy says no.  Mumu thinks it is a bad idea. 

Dogs are "too much work", apparently.

I am bumming because I just think it would be great and I wish I could get the others on board.  But hey... I also don't want to be the only one excited about it.  And it appears that if I went out and got a dog, I would be the only one happy about it. 

Except J-man.  I think he would be thrilled!

A Career Option?

 

J-man found my camera.  A sample for you.

Someday you can say "I knew him when...."

Spectacles

It started out last week with 6 seconds at his new program. 

Built up to wearing them for 10 minutes at a time yesterday.

And today, he wore them for the half hour car trip to therapy. 

So we are getting there!  They are too big...  a by-product of me not being able to really size them when we purchased them... but I think we can work with it. 

What do you think?

Skipping Best of the Best for July

I really love writing a monthly post for the Best of The Best folks. 

However, this month, I think I have to skip out.  You see, the topic is "sleep issues and the special needs child". 

Ummm... J-man actually sleeps like a dream.  Well, like any other four-year old, at least.  The whining at bedtime is nominal.  He rarely wakes up in the middle of the night, and when he does he usually goes back to sleep fairly easily.  Doesn't sleep in our bed.  Wakes up between 6am and 8am most days.  And aside from the fights to get him in-and-out of his pajamas, we really have it quite lucky.  We do stick to a fairly consistant routine, but even when things switch up (like trips to the cabin, etc)... it isn't so bad. 

Of all the things we have to deal with, sleep issues really aren't one of them. 

Which from what I hear is incredibly lucky. 

So I think it might be best to skip out on this one. 

But check them out anyway... no doubt they will have lots to say on the topic!!

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. 

Best. Laugh. Ever.

Up North, Ya Know, U Betcha

Itching to get out of town (even for an overnight), J-man and I headed 'up-nordt" to hang out at my parent's cabin. Alas, Big Daddy had to work all weekend, which was a major bummer since it was Father's Day weekend and all. But since he works from home I figured he would rather we be out of his hair... plus a kidless house can be awful nice.


Life is simple "up nordt". As you can see, people in the northland find all kinds of ways to amuse themselves.

Suck it, NYC.
You might have Broadway,
but we have meat raffles!

I know you are jealous.

The highlight of the weekend was going out on the boat. J-man loves the boat. And apparently, J-man loves fishing. This was an unknown until this weekend when we went for a little boat ride and Grandpa started a little fishing. He caught two.

And J-man was in love.

He squealed. He laughed. He wanted to hold the fish. Clean the fish. No really, he took a towel and 'cleaned' them. We let Grandpa do the real dirty work.

J-man has zero... I mean zero... fear of fish.



The next day, Grandpa produced a J-man size fishing pole. J-man is in love with Grandpa now.   J-man was also a bit of a menace. He wanted to "cast" the fishing pole just like Grandpa did. Except there are three really big problems with that. The first was that he does not have the motor coordination down to do a real fishing cast. The second... he has no patience for failure. The third? He will not take direction from anyone. He got the jist of what to do from watching Grandpa, but refused help. So he swung the rod... with a live hook buried in a fake worm... around willy-nilly.

I still have visions of losing an eye.

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)"

In Defense of Media

This month's topic over at Best of the Best SOS for Parents is on the effect that media (TV, computers, etc) has on special needs kids.  I am going to go out on a limb and say that I think the effects might be... oh, what is the word???.... oh, yeah, BAD.  And I am going to guess that many of the other fabulous bloggers will either spend time writing about either how evil TV/Computers are OR how overwhelmingly guilty they feel for allowing their children to watch/play said media. 

And they would be right.  TV is evil.  It is passive and minimally social.  It is often violent.  It is very repetitive, simplistic, and requires very little use of imagination.  All kinds of (poorly designed) studies show that letting your kid watch TV is like feeding them lead-paint and mercury-filled tuna with a BPA-infused glass of red-dye-#2 Kool-aid spiked with vodka.  I am actually surprised child-protective services isn't called.  And I feel very guilty about letting J-man watch TV or play on the IPad.  On the tally sheet of "how I fail as a parent", TV watching is #1 with a bullet. 

So, having said that...  allow me to spend just a few moments to defend media for special needs kids.

(and oh boy, does it ever need a defense!)

Letting J-man watch TV allows me to not go ape-shit insane.
 
     Parenting a special needs kid is not for the weak.  The analogy of "it is a marathon, not a sprint" comes to mind.  And TV is like the porta-potty along the way... Gross, but a necessary evil. While J-man watches Little Einsteins, I get to do exciting things like dishes.  Or laundry.  Or pee.

The repetitive nature of TV does actually teach J-man something.

     When J-man floored us with his knowledge of the alphabet, it wasn't because we didn't think he could learn it.  It was because we never taught it to him.  In our world, we had bigger fish to fry.  So where did he learn it??  I am guessing Sesame Street.  Maybe SuperWhy.  Now, of course, knowing the letters and using them to create words are two entirely different things.... but hey, that is one thing off my list! 
    Also, watching the same shows over and over and over and over again allows J-man to hear words being used in the same context with the same reference point.  The difference between TV and flashcards might only be in the entertainment value.

TV can be a medium through which we engage each other. 

     A few months ago, Mary Camarata from the Vanderbilt Late Talker Foundation saw our video of J-man watching Aladdin with Big Daddy:



She LOVED it, and actually used it in a lecture series about media.  And yes, she thinks media is evil too.  BUT, she noted that in the case of this video, we were using the context of the show to create opportunities to engage J-man, and though this engagement he went from single sounds to repeating 3-word utterances (unheard of for him at that time).  Her point was that sometimes media can be used as a springboard to engagement and discussion, but that it requires an active thought by us parents to make that happen.  But it can be an entry point into their world.

Other media, like the all-holy IPad, provide a ton of different cause-and-effect learning opportunities.

Shannon Des Roches Rosa from Squidalicious has numerous articles touting the benefits of the IPad for children with disabilities (like her son Leo).  Check her out!  What little I can add is that the IPad is huge reinforcer for J-man, and an activity that we can engage in together.  Let the bribing commence!

So there you have it.  A few small points of defense for media .  Now you will have to excuse me, J-man and I have a date to watch Blue's Clues for the 100th time.  I wonder if Steve will wear that sexy striped shirt again? 


    

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!

Video from IMFAR

I just thought I would share this great interview with the keynote speaker from the Internation Meeting for Autism Research.  Brings me back to my old days.

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

I Owe You...

... a blogpost.  I have been tardy, meaning to write many times but just not having the time to be witty and articulate and interesting.  Not that I am that any other time....  but I can't even fake it right now.

So instead, I will just grace you with some pictures of the J-man.



He is resourceful.



He made me slide down this too.  Oh yes, he did.



He really needs to learn how the ride a trike





This might be ther first time he has ever said 'cheeeese' to a camera

 A little side note on the whole "he needs to learn how to ride a trike" caption. 

J-man can't ride a trike yet.  He doesn't have the motor planning skills to coordinate peddling.  Yesterday I saw our neighbor with his little boy who is the same age as J-man ...

(and whom, by the way, never ever talk to us for no apparent reason whatsoever...  ok, maybe it is because of this moment)...

... riding a two-wheeler.  A bike! 

Sometimes I just wanna beat someone's a**, ya know?

Jaws



Villain a la James Bond


Four stainless steel caps. 

J-man isn't quite the arch-villain Jaws from the James Bond movies, but his mouth has got a bit more bling to it.  In the end, four cavities (sigh), caps and sealants on teeth, and one heckva long day a the Children's outpatient day surgery.  J-man was a trooper, however.  He did excellent with the pre-op exam, tolerated the whole mask-put-him-to-sleep routine, and woke up afterwards fairly easy and with minimal whining.  Altogether a big departure from what I expected....  of course, I expected h-e-l-l.

I must also give props to Children's... and yes, I do work there, so I might be a little biased.... but I must say they did a wonderful job with him.  I was with him until he was asleep and was allowed in the recovery room before he woke up (not standard, but they acknowledged my great wisdom in knowing what would work for him waking up).  They were gentle, used simple language, showed visuals in addition to talking, and generally took my lead on what would work best.  I was very pleasantly surprised.  Not sure why, but I was.

Daddy

Once upon a time....
There was a boy who loved his mommy.
Preferred her over all others.
Mommy, mommy, mommy.
The sun rose and set with mommy.

The daddy felt sad.
The boy liked the daddy, but chose the mommy.
The daddy felt like a third wheel.

The mommy told the daddy...
Someday this will change...
You will be the chosen one.
The sun will rise and set with you.

The daddy did not believe the mommy.
The daddy was wrong.
The mommy was right.

Because one day it was daddy, daddy, daddy.
The sun rose and set with daddy.
Daddy played the best games.
Daddy was awesome.

And mommy was relieved...
Because she could put up her feet...
And delight in the chant daddy daddy daddy!!

Best of the Best: Anxiety & Stress

I am once again honored to be a part of the Best of the Best series on SOS Research for Parents.  This month's topic was Anxiety and Stress...  which pretty much summarizes my life.  Anyhoo, I thought my last three posts pretty much summed up how something as simple as a weekend away can have far-reaching consequences. 

Ahhhh... but also great blog material, so there is that!

Check out the Best of the Best this month!!  Wonderful writers with a lot to say!

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.

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?