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)

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!

Words

A summary of some words used by the J-man tonight, phonetically presented.

eea- uup :  Ketchup

aa-kk :  Clock

av eem :  Shaving Cream

topp :  Thomas (sounds just like stop, without the 's', and much confusion ensued because he also says stop)

OO-ooo :  Orange Juice

uggt :  Chicken Nugget

Hmmm... I wonder how much we miss in any given day??


Update:  Words from this morning

auG-lat ookie :  chocolate cookie (when he says chocolate it sounds like he has a giant phlegm ball in the back of his throat)

ava : Lava

eil-t-er :  Helicopter

bee- gn : Bacon

Helpful Tip of the Day:  Trying to speak J-man?  Try each word by pronouncing everything from the back of the throat, sorta like after a lot of dental work or having a mouth full of peanut butter.

Is This Apraxia?

This is the Talking Santa App for my IPad.  It was $1.99.

Amongst all the features, you can get presents from Santa, give Santa cookies and milk, roll a giant snowball over Santa, take a picture of Santa with his friends, be mooned by Santa, make it snow and play Jingle Bells, tickle Santa, and beat him up.  Nothing says Merry Christmas like a giant snowball in Santa's face?

Santa also talks back to you.  When you vocalize to Santa, the program records your words and plays it back to you  in a kind of creepy "Santa" voice.

I shot this video of J-man "talking" to the Talking Santa Program on my IPad.  I originally shot it because it was cute... he clearly had learned that it made noise back to him... but then after I watched it I had to wonder:

 Is he actually talking to Santa?





 If I listen closely, I swear I hear a few words... or vocalizations that come close words. He waits for Santa to respond... and then responds back.  And when he adds the gestures, it makes me even more curious.  He will often "talk" to us like this... strings of sounds, often vowels, that have a slightly conversational tone to them.  It doesn't always feel like it is directed to us.  We do get quite a bit of directed one-word speech, usually related to a particular request.  But could this type of vocal play actually be his attempt to 'talk' to us?  But that the words allude him, or he is unable to even form them?

Is this apraxia?

Persistence

I thought I might do another SNBH.  This Week's Theme:  What is a recent accomplishment that your child has made?

Anyone who follows me regularly knows the strides J-man has made recently.  I view most of his daily strides as major accomplishments, but I decided yesterday's story was worthy of this topic.
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The "guys"

I was parked at the kitchen table working on one of my least-favorite chores:  paying the bills. (Anyone with me on this one?)  J-man comes running into the kitchen and grabs my hand, pulling me out of the chair and into the dining area.  In his hand he was clutching three of his "guys":  Superman, Batman, and the Joker.(He loves his guys)  He looked me directly in the eye with this urgent need in his expression. 

J-man said to me, " aAAh iIm!"

aAAh iIm??  What the....?

"What honey?" I said.

" aAAh iIm!"  he said again, insistently.  Clutching his 'guys' in his hands, J-man rubbed his fists up and down on his chest, trying to sign what he was saying.  "aAAh iIm!"

I imitated his sounds and sign, showing him I was hearing him.

"I'm sorry hon. I don't understand" I said regretfully.

But he persisted trying to get me to understand.  He didn't quit.  He signed.  He forced his words out, even though his mommy didn't understand.  He hung in there.

I watched him, as frustrated as he was, looking for any clue that might help me figure out what he was trying to tell me.  I watched his signing, listened to his words, and looked at his hands clutching his 'guys'. And suddenly it hit me like a ton of bricks...

"Bath time?!?!"  I asked excitedly.  He glowed with relief and excitement, "aAAh iIm!" with the sign for bath.

Persistence.

Some time ago J-man went through a spurt of avoiding bath time.  He just wanted to play, and bath was just a rude interruption.  At that time, we decided to try and make a game of it by putting his "guys" (and he has a lot of guys) on different stairs going up to the second level bathroom, and then had him gathering them as he went up the stairs to the throw his 'guys' into the 'pool' (bath) to go swimming.  And he took to this like a fish to water (hehehe) and it has become a routine ever since.  His guys get a bath.  His guys go swimming, get washed and dried.  He has once again embraced bath time.

How fundamentally frustrating it must be for J-man.  To have these thoughts, these ideas, these words, stuck in his mind and in his throat.  To know that communication is important, to know that he can't do it well, and to know that we adults may... no, probably... miss what he is trying to say.  How does a three year old cope with that?

And yet, he persisted.  He persisted in spite of the fact I didn't understand, in spite of his best efforts, in spite of how very hard it was for him.  Yes, this time his Mommy figured it out, but in his world that is probably the exception more than the rule.  And still...

He persisted.

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Pity Party Over

Lemons sliced and squeezed, sugar added thanks to the multitude of friends (in real life and from around the virtual world) sending me cups of it, ice added (thanks Miss Vicki!), and just a little vodka to take the edge off.

A toast to YOU, amazing friends, who have taken my breath away with your kindness.

And now the big question is what now?

And the answer is I am not sure.

We are waiting on the official report from the Camarata's, and have a phone meeting planned once we receive the report.  We will continue to follow-up with them.  I have also contacted a local therapist with experience in RDI and Floortime who we hope to have start working with us.  For us, my hubby and me.  I feel like I need someone more local who can help us figure this stuff out one on one. 

I told our speech therapist Miss S about our trip and what the Camarata's had to say, and she was very supportive.  She knows who the Camaratas are and acknowledged their coolness. She agreed with their analysis, but did mention that she has seen J-man be more interactive and engaging over the last 6 months (WAY more than they did, that is for sure), and that she is very pleased with the progress he has made in speech.  She also told me that she feels that... aside from the interaction piece and the language piece... that J-man is definitely hindered by apraxia.

And here, dear readers, is why parents go ape-sh*t crazy.

You see, the Camarata's don't believe apraxia exists as a diagnosis.  And I told Miss S that, and asked what her thoughts were.  And we had this GREAT conversation about the nature of research, of diagnosis, and of intervention.  Basically, there are plenty of professionals who do not accept the Childhood Apraxia of Speech as a 'real' diagnosis, largely because there is not enough research to support the diagnosis as real or different from other diagnostic categories. And they would be right... the research is not there.  But Miss S did say that if we called it an oral motor planning problem, they would probably be OK with it.  And they probably would...  they definitely said he has 'immature speech patterns', but honestly he used very little speech or speech sounds during the evaluation. 

She said that regardless of the semantics, she has routinely observed his struggle with forming words.  And the truth is, I have too.  I can see it in every attempt he makes.  I swear, sometimes it sounds like he has marbles in his mouth.  And you can tell it is so terribly frustrating for him. 

It was a good conversation, and nice to get the input of someone who has been with him for a while.

So much to digest and think about.  So many unknowns. 

But on a positive note, check out this cute picture. 



 Yes, those are my shoes.

The road is long

J-man has been going to his new speech therapist for nearly one month. Not long, to be sure. But his mouth has been moving more in the past few months than it ever has, making attempts at sounds and words every day. So our new therapist has had some of the best exposure to his new 'skills'.

I asked her yesterday if, given her experience and what she now sees J-man doing, if she thought Apraxia was the right diagnosis for him.

She said yes. Most definitely.

Of course, we both agree that it isn't the end of the story.... there is more going on that just apraxia. But getting a definitive diagnosis of apraxia has been hard because up until a few months ago, he wasn't making enough attempts to say anything. Now, however, she can "see" the oral-motor sequencing problems.

There are days, when J-man is trying hard and doing good, when I feel like maybe we will see the end of this road sooner rather than later. And then there are days... like today... when I just can't imagine how we will ever make it.

Quiet

Sometimes he is so quiet.
Frequently he is so quiet.

Word attempts are sporadic.
I can never predict when
he might make a sound or word.

He doesn't jabber or babble.
Not to himself, and not to us.
At least, not often.

He is quiet.

Some days I think he wants to communicate.
To talk.

Other days I think he is happy being quiet.

Wordless.

Support Team J-Man!!!

We are walking in the Childhood Apraxia of Speech Walk-a-Thon here in Minnesota. It may be cold, it may be snowy, but we will be there! With parkas on!

Childhood Apraxia of Speech is a motor planning problem where the areas of the brain that plan and coordinate speech production do not function properly. Essentially, the way I typically explain it is that it is like having a TV and a cable box, but no cord to connect the two. They both may work great, but all you will get is static. The areas of the brain in apraxia are not communicating in such a way as to allow for speech to occur. Because the motor planning is so difficult, other areas of learning can be compromised. Jonathan has Childhood Apraxia of Speech.

So, if you have a little extra coin, consider dropping it toward a great cause. Very little is known about the causes of Childhood Apraxia of Speech, and treatment is often a long road to go down. The CASANA foundation spearheads this effort, providing money for research and education.

So hey, donate to our team: TEAM J-MAN

1 in 100?

Recently I posted the following video clip on Facebook.


Watch CBS News Videos Online

A dear friend of mine, a grad school buddy, suggested that this study mentioned was seriously flawed (indeed that is true) and that the reason we see these increased rates is because of "a broader diagnostic criteria & greater public awareness". He is certainly not the only one to feel this way... that the rates of autism are some kind of statistical anomaly and not truly reflective of "pure autism". And indeed, while these reasons may be a factor in the rate change and prevalence of autism, I would suggest that those reasons are wholly unsatisfying to both why the rate changes are being seen and what these rate changes actually mean.

Of course, there are two possible lines of reasoning for the changes in the rates of autism.

Reason One: the reason no one wants to be true is that there is a real, honest-to-goodness reason why we are seeing more autism. The possibility that... for some unknown, scary reason... children are having some major neurological event either prenatally or in the very early developmental years that results in the unique autism symptomology. The theories range from the the plausible (prenatal exposure to some kind of teratogen, possible autoimmune issues coupled with environmental or viral insult, mitochondrial issues), to the unique (folic acid overload, Vitamin D deficiency) to the crazy-ass (just Google for the nutcases).

People with no children or typical children are scared to death of Reason One... because lets face it.... if it is Reason One, it could happen to your children. It is nicer to think that it is all genetic, and you are safe, and the rate increase is all about Reason Two.

Reason Two: The new rates of autism are a statistical anomaly, the result of over diagnosis or misdiagnosis, or both (whew, thank god.... it isn't real.... anyhoo.... ).

Ok, let's make the assumption that the true occurrence of autism in the world has stayed stable for the last 1000 years (in essence, there is no other reason for more autism). Given that assumption, what are the reasons for the current changes in overall rates in autism diagnosis? The possibilies, as far as I can tell, fall into the following categories:

1) Autism has been historically under-diagnosed. Basically, this assumption suggests that the current rates are more accurate, and that the previous rates (of 1 in 150 kids) suggest a lack of overall diagnostic ability by professionals in the field and that the broader inclusion of mild to moderate cases actually does reflect the same neurological conditions that lead to these specific disorders. Thus, this suggests 50 years ago we either had:

A) A lot of mild to moderate autistic children running around not getting services, and ending up labeled learning disabled, emotionally disturbed, or ultimately becoming diagnosed autistic due worsening symptoms, or

B) The mild to moderate ones "grew out of it" (which experts say can't happen, but whatever)

2.) Autism is being grossly over-diagnosed. Basically, this assumption suggests that there has been a complete frenzy to diagnose kids with autism, even though they might not meet strict criteria. Diagnosticians are misdiagnosing kids because they either are poorly trained in recognizing 'true autism' or are motivated to "get kids services" and the easiest way is to give an autism label. Therefore, the "new autism rates" are a reflection of a misapplication of the diagnostic criteria and a "problematic" and gross broadening of the criteria.

Of course, this assumption then suggests that the kids that are being NOW diagnosed as "mild to moderate autism" are, in fact, either:

A) Just fine... nothing is wrong with them that a swift kick in the ass won't cure;

B) Suffering from some other condition that causes significant language delays, social delays, and/or sensory issues (see my review of Autistic-Like Graham's Story) and apparently we have no words for and no historic precedent for, or;

C) There are always weird kids... that is all they are and were 50 years ago.

3.) Early identification is the reason we see a rise in Autism rates. So, in the last 10-15 years, a lot of education has gone toward getting doctors and educators 'up to speed' on autism spectrum disorders and working toward an early intervention model that allows these kiddos to get services early and improve outcomes. Ok so, more awareness, more reporting, increased rates. Makes sense.

Except, and here is the part I cannot get my head around... then what happened 50 years ago? So, 50 years ago, a kid was not identified as autistic early... in fact, nothing was noticed until school age. Well, there was 1 of 3 possible scenarios:

1) Kid was not truly autistic, or "grew out of " the symptoms by the time he/she reached school age.... enough so the teacher just thought the kid was weird, but not disabled. Probably didn't do awesome in school either. Experts say that can't happen... neurology is neurology... but whatever.

2) Kid was truly autistic and was stimming like a mad-fiend when he entered kindergarten. Which, if this ended up happening the rates would go UP, right.... just the reporting TIME would change, not occurrence.

3) Once the kid entered school and still had some difficulties and behaviors, he was dealt with as LD or emotionally disturbed.


So, does that mean that we are just re-labeling the problem with new words? If the rates have truly remained the same for the last ... oh, say....1000 years, what accounts for these new kids? Are they faking? Misdiagnosed? Brats? Had they been diagnosed as something else 50 years ago? Or not at all?

That is what makes me most curious. IF the rates are really statistical anomalies, then what would we have called these other "new" kids?

Or, is it possible that these mild to moderate cases are really something NEW? That 50 years ago we didn't see these kids because they weren't there... that something more has happened than just some re-labeling shuffle.

I really don't have any answers, but I can say this. In my humble experience, parents of a child who is given an autism diagnosis rarely sit back and just accept it. Generally, every parent I know looks for second, third, and fourth opinions. Indeed, I would guess that the increased awareness even fuels THAT... going out and finding better doctors, more complete evaluations. And even if there is funny business going on (and I am sure there is)... there is a reason for it. No one I know WANTS their child to have a disability. What they want... what they need... is help for their lost child.

So, what is My Big Opinion?

Call it Autism. Call it Apraxia. Call it Sensory Processing Disorder. Hell, call it the Snowman Syndrome for all I care. But recognize that all of this really does mean something for that 1 in 100 family, regardless of what you call it. Regardless of whether these children are being correctly diagnosed, mislabeled, or are the mark of some new, scary epidemic, we cannot and must not poo-poo these rates. These rates DO mean something. They mean that for one family in one hundred, life will never be the same and they will face struggles that other families will not. It means that their child... whatever the reason... is struggling with something that impacts their ability to learn, ability to form relationships, and ability to interact with their world. For all of our fine categories and fancy diagnosic labels, let's not forget to keep our eye what is really important.

A River in Egypt?

This has been a really weird week. A highly emotional week.

It is hard to get a pulse on what I mean. I am not sure how to articulate it. A bit of a roller coaster ride of emotions, both bad and good. But what I can say is that something seems to be changing around here, and whatever it is... it feels Big.

On the downside, we had a re-evaluation with Dr M at Children's Hospital. This evaluation consisted of a lot of questions regarding the J-man's development, where he is at, what he is and is not doing... and some basic observations of him playing in the room. Dr M completed both the Vineland and the CARS (standardized assessments) and from both these assessments and his 'clinical impression' he has diagnosed Jonathan with "mild autism and significant apraxia".

Of course, the "A" word makes me absolutely sick to my stomach. It is such a loaded word, filled with a lot of scary, negative unknowns and terrifing possiblities. While intellectually I know autism has a very broad spectrum and that many, many people have been diagnosed with the big "A" and either 'come out of it' or been so high functioning that (with intervention) were able to lead great lives... but as a parent, it is still a terrifing word to hear. And it isn't like I didn't know this word might be coming down the pike... I think we have been running from this word since day one.

.

And what does our running from this word MEAN? Is it merely Denial... not wanting to accept what may very well be reality? Or is it something more? Why is it that a large part of my heart and mind that really feels.... believes.... that this is NOT autism? That this is something different, less easy to define, more specific to Jonathan. More based in language and motor planning, not socialization, not sensory. But on the other hand... is that just wishful thinking? Am I turning away from something true because I cannot look it in the eye? He has many of the symptoms... many, many 'red flags'. Is fighting that diagnosis about HIM or ME? If it is me... then I need to get over it. BUT... if it is HIM... then accepting the diagnosis is like giving up on his truth.

.

To add to it all.... Jonathan has had an amazing week. NEVER has he been more verbal... both with signs and vocalizations. I cannot list the number of spontaneous new vocalizations he has had.... word approximations for things like bike, water, cookie, chip, passy, etc etc. He is imitating up a storm... he even copied me making a gobble-gobble turkey sound WITH ARM MOVEMENTS! Sounds that a truck makes... vrrrooom... beep beep noises. We have NEVER heard this from him. He also started preschool this week and did wonderfully. He even sat for circle time and clapped his hands! He has been so engaged, so involved, so here. These might seem like simple, silly milestones to you, but they are miracles for us. Nevertheless, he is still so far away from his peers.

.

So how do I accept the big "A" with a week like this? Or rather, DO I accept it? Is my instinct to reject this diagnosis just denial or is it something more?

Right now, I am going with something MORE.

Of course, that might just be my denial talking.

Giving him clarity

An intriguing thought was presented to me the other day, and I have found myself thinking about it all weekend.

I have always had issues with being excluded from the J-man's therapy. Philosophically, I have felt that it was important for me to learn what to do with him. Also, I have just had a gut reaction to the idea... I just have never thought it will go well. However, our newest speech therapy location does have one-way mirror-windows so that I can sit and observe. Our speech therapist there tried to 'encourage' me to step out and observe, instead of sitting in the room with Jonathan during therapy. I didn't like the idea and neither did Jonathan... he basically melted down every time we tried. So, we have backed off for the summer...

This week I spoke with the Apraxia expert (JJ) who evaluated Jonathan a few months ago. I contacted her because I had recently watched a video from the Childhood Apraxia association. One of the experts interviewed on this video stated that if your child is not making "progress" in speech therapy within a 'short' period of time, you need to seek out other therapy or switch up the techniques or strategies used. My question to JJ was how do I know if he is making progress? What defines progress? Obviously if he is talking up a storm... well, there you go! But if not? Are 5 signs in a year and a half progress? Is that enough?

Anyway, we spoke at length about Jonathan. Where he is, what we are doing, where do we go from here....? I won't bore you with the details. What stuck with me from the conversation was her take on this 'separation during therapy' issue. When I explained the problem, this is what she said:

"(paraphrase)... Well, of course he needs you there! For him, you are his interpreter in a confusing world where he doesn't know how to express his needs or concerns. You provide information and understanding, and he trusts that you ... trusts YOU....will help him. No one else will be able to do what you can for him, and no one can be as effective as you for making the changes in communication he needs. He knows this, and so do you. That is what your gut is saying..."

I like her. We might have to switch therapists again... dang it.

Pia

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