Autism, Acceptance, and April

April is Autism Awareness and Acceptance Month

For some people it is a month devoted to building awareness.  For some it is about teaching acceptance.  For others it is about rallying for a 'cure'.  For others it is about building support.  And for others it is about celebrating autism's challenges and triumphs.  It is a mixed bag of responses in a divided community, with  some horribly harmful messages (like using the word "hate")  and beautifully inspiring messages.  It is exhausting and inspiring and frustrating and motivating.

On April 1st, I helped spearhead a fundraiser for a local autism organization that provides supports, information, and activities for the local community.  It is an organization affiliated with the program J-man goes with, and they are small potatoes:  simple events, seminars, and the like.  For example, they are holding an upcoming fundraiser to help a family in the program whose autistic child has cancer.  That is what they do.  They don't promise a "cure"and aren't looking to change the world.  They help small groups of people with simple things.  They hold fun events that are sensory friendly and autism accepting.  It is local level advocacy that I can really get behind.

The Ladies from Salon Onyx

Highlight It Up Blue for Autism was my brainchild:  Get blue hair extensions for the month of April and use your blue hair as an opportunity to talk about autism and what it means for you in your life.  To educate people, to generate discussion, and hopefully affect people in some small way.  My friend Tera and I organized it online.  We got stylists from a local salon (Salon Onyx) to volunteer their time.  We made a Facebook page.  We networked.

Tera of Tera Photography
These amazing photos are hers!

The turnout was amazing.  Considering myself and my friend Tera organized it via email and Facebook, we were both stunned at the number of people who showed up to get silly blue hair extensions, make a donation, and meet each other.

Over 160 people stood in line:  mothers, fathers, brothers, sisters, friends, family, autistics and neurotypicals, professionals, teachers and lay-people.  People who want a 'cure'.  People who believe in neurodiversity.  People who knew very little about autism.  People who live with autism every day of their lives.  People who do every therapy known to man.  People who don't.  The rainbow of beliefs about autism was represented in those people who stood together in line this one day, who laughed and giggled about getting a silly little blue hair extensions, who had their photo taken, who shared the experience with their friends and family on Facebook.  They all shared one thing, though:

Love

Love

Love

They may love someone with autism.  They may BE someone with autism, and they love themselves and their friends and family.  They want others to understand it;  they want to understand it themselves.  Some flounder.  Some don't. But they all LOVE.

This month I devote to loving autism.  I believe in acceptance, insofar as I believe that my boy has a brilliant brain that experiences the world differently and that is okay. His brain needs to learn about the world differently and that is okay.  I believe his path to happiness might be different and that is okay.  I believe he is capable and able and disabled and that is okay.  That is my message this month.  In fact, it is not just okay... it is good.

He is the Amazing J-man.

J-man, I love you.

Six More Weeks of Winter?

Five years ago today, J-man was born.  The high that day was -10 F below zero.  It was Groundhog's day.  Clearly, when Mr Groundhog poked his head out and saw it was -10 below zero, he turned his furry butt around and said "c-ya in six weeks, suckers!"  Every year since, Mr Groundhog has poked his head out, gave the skies an evil eye, and high-tailed it back underground for six more weeks of winter.  Withdrawing and hibernating in his little cave.

According to the folks in Pennsylvania, Mr Groundhog did the about face again today.  Six more weeks of winter.

But I beg to differ, Phil.  I feel spring in our air.  I see J-man starting to bloom.  I think our winter is nearly over and we are going to be seeing the sun.  So go hide in your hole, Phil, if you need to.

We are emerging.

Channeling Michael Jackson

The other day J-man did something that was completely new for us. 

He came running to me to show me his "owie". 

Now, by "owie" I don't mean a real, honest-to-goodness injury that would leave a child bleeding and crying.  No, this was that tiny-scratch-you-can-barely-see kind of owie. He came running to me... genuinely concerned... wanting kisses and comfort and a solution to this microscopic gaping wound. 

I offered a band-aid.

I offered a band-aid knowing that J-man hates band-aids.  Always has.  Other children might be covered with band-aids from head-to-toe, but J-man wants nothing to do with them. (Note:  This is from the kid who did THIS.)  But hey... what else could I possibly offer?   Dermabond?  An ER visit? 

So I offered a band-aid.  And he said yes. He said yes as he "fake cried" his way to the bathroom with me in search of said band-aid. Being fairly shocked and somewhat skeptical, I found a small band-aid in the first aid kit and offered to put in on the "owie".  It was then J-man realized that no, he really didn't want a band-aid because he hates band-aids. 

"No ban-ai!  No ban-ai!"  he shouted at the top of his lungs.  He looked perplexed for a moment, and then came up with a fairly genius solution.  He said, emphatically, "loves!"

Huh?

As he chanted this word in an ever-escalating panicked voice, I tried to decipher what he was saying.  And then it hit me....

Gloves.

Holy Crap.  He wants to wear gloves to protect his 'injured' hand.  HOLY CRAP!!

Allow me to note at this time that J-man has never, ever worn gloves.  Period.  Lucky for me I had just purchased a set of small boys gloves and so we got them and put them on.  And he kept the glove on.  All day.  All night.  All the next day.  He wore it to eat.  He wore it to sleep.  He wore it to our Halloween Party and Trick or Treating. 

Two days later, the glove is finally gone.  And the wound is healed.  That, my friends, is alternative medicine.

The Glove
(Ignore the chunky witch next to J-man)

Happy Halloween

I was a little worried about today.

J-man woke up on the wrong side of the bed.  Grumpy and tired, his favorite word was "no".  He took it to the extreme this morning, refusing to go potty.  Until 11am.  Yes, you read that right. He "held his water" from 8pm the night before until 11am.  Now, that's a super bladder and a stubborn streak!!!  The rest of the morning and early afternoon seemed to follow this course:  "No" to anything/everything I said.  Period.  But he seemed to get over it by evening and trick-r-treating went awesome. He loved his costume, he loved all the other costumes.  He loved the door knocking, the saying "trick or treat", and getting the candy.  And he doesn't even LIKE candy.

 Halloween is truly J-man's holiday. 

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!

The Little Things

I will say being J-man's mom has definitely helped me pay attention to the little things in life.  The simple pieces of the puzzle.  When they fall into place, there is no missing them.  No ignoring or having them pass by unnoticed.  The smallest gain, the simplest milestone is noticed and honored and cherished.  It is a double edge sword, of course, because the lags and delays are there too, and every 'problem' makes me afraid we have a Problem. I notice them too.

But one thing that I hope J-man comes to know about his mommy is that ... if I am anything... I am present and aware of him.  The whole of him. 

And that every single moment matters.

Hot Summer Days

I owe you a post, but I haven't really had a chance to sit down and write.  As you will see, J-man and I have been VERY busy. 






This is an excellent language day for J-man. If you have ever wondered how J-man's apraxia and ASD affect him, here you go! What you are hearing is his language delay and apraxia, but if you listen very carefully you will hear him say a lot.... even one or two full sentences!!  His engagement is pretty great today... and yes, I should be playing with him... I promise you, I did put the camera down and get wet!! 

It is the only way to spend a hot summer day!

A Career Option?

 

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

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

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????

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)"

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

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!!

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.

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!

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!

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.