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!

The Middle Place

Ever hear the saying "When life gives you lemons, make lemonade" ?

Ok, so here's the problem with that statement. You see, when life hands me lemons, I really want to make lemonade. Really, I do. But see, I cut my finger slicing the lemons up. And then I get lemon juice in the cut, and boy does THAT sting! And then I get blood stains on my brand new white t-shirt trying to find a Band-Aid. Then, while squeezing said lemons, I inadvertently squirt lemon juice in my eye. In shock, I rub my eye with my lemon juice covered hands, which takes a bad situation and makes it worse.  I try (with my one eye) to find the sugar, I realize there is none. The sugar is all gone! So, in a hurry, I run out the door to borrow a little sugar.  I stub my toe on the door jam running out.  I arrive at your door, limping, one-eyed, and bleeding, asking for just a little cup of sugar. 

To try and make my lemons into lemonade.

The evaluation went well.  That is to say, we had it, and J-man was J-man.  Not J-man at his best, to be sure... but not at his worst either.  They tried to do some standardized testing, and did pretty well until he stopped complying.  He did what he normally does in a new, toy-filled environment.... basically told us all to bugger off and let him play. 
 
The Camarata's spent about four hours with us, which was very generous.  After observing, testing and asking us questions, this was what they had to say:
 
J-man does not have 'classic' autism....
 
However...
 
... he doesn't just have a mixed expressive-receptive language delay either.  J-man is in The Middle Place.  The DSM-IV calls it PDD-NOS:  Pervasive Developmental Disorder - Not Otherwise Specified.  Dr. Camarata hates that label.  He says it has become a "catch all" for kiddos who don't fit anywhere else, and is almost worthless diagnostically. And as a diagnostic label, it is going away in the DSM-V (because it is such a mess). 
 

They feel that J-man's issues stem from a temperament that is excessively socially self-reliant and a general lack of desire for engagement.  He wants what he wants, when he wants it, and only his way.  To add to that, he doesn't have good attention directed to social messages.  These two things, in combination, lead to a lack of attention to language cues.  And lack of attention to words, and a lack of desire to communicate.  They said that there could also be an underlying language disorder at work, but until the interaction piece improves, they cannot be sure if these are two independent issues or if one issue is "feeding" the other.

 

And it is no doubt going to be a lifelong issue.

 

They did feel there is ability for "movement" on this "excessive independence" (with a lot of work), but this orientation to not engage, to be alone, is part of who he is.  It could affect all of his lifelong learning. 
 
Friendships (or lack thereof?). 
 
Everything.

 

The Camarata's did give us a lot of advice, techniques they want us to start using, and a commitment to an on-going consultation.  They did say they felt a strict ABA approach was not appropriate, but some modified techniques might be helpful.  They cautioned about pushing language use too hard, and want us to focus on building interaction.

 

But honestly, I can't remember a lot of the advice and techniques.
 
Because I have lemon juice in my eye, my finger is cut, stinging and bleeding, and my toe is throbbing.
 

Fu*king lemonade.

Travel'n Down to Nashville

After much hemming, hawing, a-strumming on the banjo and blowing into a jug, we've made a decision. We are a travel'n down to Nashville to see Dr Stephen Camarata of Vanderbelt University and his colleague (and probably more??? Just guessing.... the name and all), Dr Mary Camarata.

Dr Camarata is a nationally known expert in language disorders, including autistic disorders, mixed expressive and receptive language disorders, articulation issues, and other related developmental disorders. His resume is impressive, including:

• Over 30 peer-reviewed publications related to language disorders, development, and comparable issues;
• Director of Research in Communication disorders at John F Kennedy Center for Research in Human Development at Vanderbelt University
• Research evaluator/participant for the National Institutes of Health Center for Scientific Review
• Director of the Foundation for Late Talking Children

He knows his sh*t.

Recently, Dr Camarata was interviewed on CNN.

About 6 months ago I joined the Natural Late Talkers online support group to learn a little more about this "late talking" issue and to get a different perspective on what might be going on with the J-man. This group is made up largely of parents whose kids do not fit the DSM IV Autism diagnostic criteria, but yet struggle to get educators and professionals to think of their children in any other way. This is a smart group of people, who know the DSM IV very well, and are well informed about what is and is not autism. They don't want an "easier" diagnosis .... they want the right diagnosis. And the right treatment for their very unusual children.

And we fit with them.... their willingness to question, their desire for the right answer... whatever that answer may be.

A large number of these parents have consulted with the Camaratas because of their expertise in the complexities of severe language issues. They are, in many respects, the expert's experts. So we contacted the Camaratas and made an appointment to see them in July for a full evaluation. I don't know what they will say, but I guess I trust that whatever they do say will be right, be true, be accurate.

I just feel it in my gut.

So, here's to answers: good, bad or ugly.

I just wish I liked country music.

Eval-A-Go-Go

We wanted to go to SuperDoc for the SuperEval.


Alas, our dreams ... at least for now... are dashed.


But that is ok. Instead, we were referred to a speech-language pathologist who used to work for the State many years ago, and now owns a private agency in the Cities. According to the Important Person at the Department of Health, she is one of the leading experts in our area on toddlers with significant speech delays, and has very extensive experience with apraxia. Since so many people have been hinting at that, but no one has been able to definitively say that is what is going on, it has been eating at my craw. So, we decided to go for it and see what she had to say.

The eval was TWO HOURS. Actually, to be honest, it was the best eval we have had. She asked all the right questions, made great observations about Jonathan... even keying into some of his more subtle skills and abilities... and listened to both him and me. It was great.

And her opinion? Well, that is complicated.

She does indeed believe that at least a large part of Jonathan's issues are about motor planning. She explained that motor planning issues (like apraxia or dyspraxia) are not like the issues that adults have after a stroke. There isn't just one area that is damaged necessarily. On an MRI, the brain may look totally normal. But the way the different areas of the brain "talk" to each other is disrupted. In other words, these issues are often the result of discoordination of the areas of the brain responsible for speech and motor movements. Getting these areas to work in consort is where the difficulty lies. Because of this discoordination, the child does not interact with speech and language the same way as other children. Frustration ensues, and it can either manifest as shutting down, disconnecting, or acting out. Often these kids also exhibit poor motor coordination in other areas. They may be slow to sit, to walk, clumsy, or resistant to doing certain motor tasks. Much like my boy.

However, she also offered that he may also have some underlying receptive and expressive language issues in conjunction with these motor planning issues. Since apraxia... pure apraxia... is quite rare and difficult to diagnose, she was quite clear that his story is undoubtedly not done yet. But she was firm in that his therapy needs to be very focused on his imitation skills and getting him consistently making sounds, especially on request. She promised a detailed write-up with very specific suggestions for treatment, and asked us to stay in touch and call if we have any questions.

She was also quite clear that... while the "spectrum" could certainly still be in the mix.... she felt that much of what she was seeing from him really pointed to his language delays. She was firm in saying that unless there was a dramatic change in his behavior.... greater social withdrawl or sensory issues... that a specific autism evaluation might not buy us much but a "label". And since we already have services, and will continue to have services given the extent of his language delay, there is no need to impose any other label on him. Useless, actually.

It was one of the best evals that we have had. I am not sure she told me anything more than what I already suspected, but I do feel like she really understood Jonathan and was able to articulate his needs. It will take me a while to digest what this might mean...

I was... am... impressed.

Pia