Occupational Therapy Results

Once again, after a really long break, I say that I'm ready to get back into this. Do I mean it? Only time will tell.  It just seems as if there are so many things to get done during the day, and I never seem to be able to get onto this blog to make a simplepost.  And now, I can't remember where I am in our little history.  I've missed so many important things...I have a lot of backtracking to do!

To help from making a lot of clarifications along the way in regards to other things, let's just get right into our visit to the Occupationl Therapist and what we found out from her.

Upon the request of Jessica Leger, I called the child occupational and physical therapists associated with the Women's & Children's Hospital.  Unfortuantely, they had a waiting list months long.  I did a little investigating online and found a couple other places that sounded promising.  One that I called gave us an online free consultation and asked me to bring Emerson in for a one-on-one evaluation.  They, too, had a months long waiting list, but were willing to at least evaluate him and put us on a cancelled appointment call list while we waited for a permanent standing appointment.

On January 16th (goodness, that was quite a while ago!), Emerson and I went to Pediatric Therapy and Learning Center--Pediatric TLC--for Emerson's evalution.  I had filled out a long questionnaire (and had the daycare provider fill it out as well) about Emerson's medical history, his abilities and any sensory issues.  His evaluation consisted of drawing, tracing, placing pegs, folding papers, picking out shapes, etc for the fine motor activities and climbing, jumping, swinging, crawling, etc for gross motor activities.  Because he took over twice as long on the fine motor activitysection (part of the reasonin being his constant need of redirection and his distractibility to noises coming from the general therapy area), Allison was unable to complete the gross motor activity section.  She got enough of an idea, however, to complete his diagnosis and evaluation.

So, what were the results?  Less than hopeful, but not horrible. All I needed was to hear about more issues with Emerson that we would have to pay heed to and try to wok with, but that's exactly what we got.

Allison's report stated that the test for fine and gross motor skills was incomplete because, during the fine motor section, his distractibility, constant need for redirection, and frequent movement breaks caused the 15-20 minute test to stretch on for just over 40 minutes!  His fine motor precision and integration both tested within average ranges, but his manual dexterity and bilateral coordination were much below average.She did not have time to test his upper limb coordination, balance, running speed and agility, or strength.  She did assess his handwriting abilities where he scored within normal limits for things such as maintaining web space between fingers and arching his hand to hold the pen; he tested within a limited range for the forearm/wrist stabilization and range of motion of digits; and he tested as impaired in areas such as proprioceptive feedback and distal rotation. 

Emerson was also tested in all the sensory areas as well: auditory, visual, vestibular, touch, oral, and multisensory (to see how he responds to a variety of sensory input because, afterall, that's how we all experience the world--thru multiple sensory experiences at the same time).  Just briefly, he tested "typical" in only the visual and oral areas.  Everything else--auditory, touch, vestibular, multisensory--showed a definite difference compared to the average ratings for his age group.

Other sensory areas that were tested showed a definite difference from the average mean in endurance, body position/movement (moving effectively for the task at hand), sensory input negatively affecting emotional responses, and modulation of movement affecting activity level (needing to move constantly).

Overall, the following were Allison's clinical observations:

Proprioceptive System:

Reminder: The proprioceptive system is responsible for our understanding of body position (left, right; up, down).  It also allows us to determine how much force to use for specific tasks (petting the dog vs hammering a nail).  It allows us to perform tasks without vision, such as touching our nose, walking through a dark room, and buttoning the top button of a shirt. 

Emerson exhibited the following deficits in proprioceptive processing--

     *Decreased performance on finger to nose test

     * Poor joint stability in shoulders
     * Poor endurance in unsupported sitting
     * Difficulty following model to fold paper
     * Preferred activities that offered increased crashing and bumping
     * Unable to land on his feet while sliding
     * Decreased balance when vision was occluded
     * Sat on his feet while in the chair

Tactile System
Reminder: The tactile system serves as part of our protective system, specifically to light touch.  Some individuals exhibit an intense reaction to irrelevant light touch inputs, resulting in a protective reaction that is often seen in "flight, fright or fight" reaction.  When individuals respond to irrelevant stimuli as "threatening", they often resort to more protective reactions, such as biting or hitting, fleeing the experience; or shutting down.
Emerson was reported to have increased sensitivities to touch. They are as follows--
     * Dislikes being touched unless he initiates
     * Apprehensive about being barefoot, especially outsde in grass
     * Prefers to keep his socks on
     * Increased mouthing of inedible objects (clothes, rocks, writing utensils, toys)
Another aspect of the tactile system is to discriminate and localize touch. These abilities, in combination with the proprioceptive system, allows us to perform fine motor and self care skills with little to no visual input, resulting in more automatic performance.
Emerson exhibited the following--
     * Decreased localization of tactile stimuli on the arms
     * Decreased awareness of tactile input as noted by increased touching of objects, increased mouthing of inedible objects, doesn't notice when face is messy
     * Decreased graphesthesia (the ability to feel writing on the skin purely by the sensation of touch)
     * Decreased finger identification (when finger is touched and there is no visual stimuli)
     * Decreased supine flexion (lying on back with knees flexed into stomach while keeping head off of the floor)

Vestibular System
Reminder: The vestibular system is responsible for discriminating movement in space with input from our inner ear. It provides us with information about the position and motion of our heads in relation to gravity for the development of equilibrium reactions. This system works simultaneously with the proprioceptive system to regulate muscle tone, develop postural control and balance, and provide a foundation for skill development in bilateral and eye-hand coordination.
Emerson exhibited the following deficits in regards to vestibular processing--
     * Decreased postural control
     * Increased fidgeting at the table
     * Leaning on thetable during fine motor activities
     * Standing up at the table during testing or in-between subtest items
     * Decreased bilateral coordination
     * Decreased trunk flexion while jumping on the trampoline

So, out of all this, what was the assessent and recommendations made by Pediatric TLC?

Assessment
Emerson appears to exhibit significant deficits in vestibular, proprioceptive and tactile processing, which is leading to symptoms of dyspraxia.  Praxis is the ability to plan and carry out a novel activity.  In dyspraxia, a child has great difficulty planning how to approach and carry out new activities.  A child with dyspraxia has difficulty knowing what to "do" with toys or games; instead, the child may resort to lining up toys or simply pushing them around.  (On a side note:  I was reminded of this explanation of dyspraxia just this past week when I took out 2 pails of building blocks for the boys to play with for a while.  Emerson set to work building me a castle, but--unable to "see" how the blocks could work together--he simply stood a bunch of them up on their ends, pushed them close together and declared his castle complete.  Even when we show him how to build towers and walls, he has to be directed where to put each block because he just can't figure it out on his own. His brain doesn't work that way.)

Recommendations
     * Occupational therapy intervention 2-3 times a week for 60 minute sessions, wth re-evaluation at six months
     * Home program to address decreased fine motor skills
     * Home program/sensory diet to address decreased regulation and/or decreased motor planning
     * Therapeutic Listening two times a y for 30 minutes per session


Of course, Allison also listed our goals for Emerson at the time of his 6 month assessment.  They called us every once in a while to see if we wanted to take a cancellation spot, and they finally had one permanent spot open for us on Thursday mornings with a wonderful OT named Lauren. Emerson just loves her tpo pieces!  But we're still waiting for a second standing appointment.  Right now, however, once a week is better than nothing at all.  They haven't given us a specific sensory diet to do at home, but we try to do some of the same things at home that they do at therapy.  I have to stay in the waiting area during sessions--so as to not distract him--but Lauren lets me know what they did that day and ask about modifications we can do at home. 

I think that's enough for today.  I'll fill in blanks as to what they do at therapy and what we do at home to help; and I'll define Dyspraxia as I have SPD and Autism. (Did I write a blog about how they switched his diagnosis from Autism to Asperger's?  Really no difference as far as anything goes except the school district and our insurance are less likely to consider a diagnosis of Asperger's as seriously as they would a diagnosis of Autism.  In the future, Asperger's will be grouped into the Autism umbrella and no distinction will be made. It seems to be hurting us now, though, and I wish they would have just left the original diagnosis alone.  They changed it because Eerson did not have any verbal delays...one of the main differences that marks an Aspie.)

Oh, and a special thanks to Melisa who gave me the gentle nudge I needed last week to get me back writing on this blog.  Thanks, chica!

After A Long Break...

...I'm ready to start blogging again.  And, really, I don't know why I've put it off so much.  Afterall, it's not like I have a job yet!  And my job hunting doesn't take up my entire day every day, nor does housework and laundry (which reminds me that I have some laundry in the dryer that needs to be taken care of soon!)

There has been a lot happening that I need to share with all of you:  Emerson's occupation therapy evaluation and his sub-sequent visits, definitions for the new diagnoses he has received, the Listening Therapy he is a month into, the sensory items we have been trying and opinions as to whether or not they're working, his stint of violence--punching me in the face, particularly--and how we handled it, his behavior at his daycenter and our opinions on how he is doing there and in general, the visit from the Parent Child Center to his daycenter, his upcoming re-testing by the Parent Child Center, Kindergarten registration, the soccer program we registered him for in hopes of helping his gross motor skills as well as his socialization skills, and his ongoing perseveration with dinosaurs.

Whew! That's quite a list and a lot of fodder for upcoming blog posts!  I guess it's more of a list for me so I remember what I need to write about...and you can all hold me accountable if I forget something!

That's all for today.  I actually have a job interview coming up this afternoon, so I need to shower and dress for that.  It's been so long since I've done my hair and wore make-up!  I hope I remember how to do it! LOL 

Rough Road For A While

We've been a little busy lately, so I haven't posted for a while.  There was a hospitalization, a nervous break-down and I lost my job.  I'm trying to stay positive, but when you live paycheck to paycheck and only have a couple hundred in savings...well, it's hard trying to figure out how to make ends meet.  If I don't find a job by the end of next week, we're going to be in some serious trouble.  I filed for unemployment, but that is not even half of what I was making per pay period.  We already live with the basics...basic cable, cheapest phones and phone plan, groceries have been cut long ago, no dinners out ever, morning coffee had been cut a few months ago, no new clothes for anyone--as it was, we only bought new clothes for boys or replaced ours when they got too holey, new shoes only for the boys, haircuts for me got cut down to one or two per year 2 years ago, and so on.  I'll be going through our things--especially the boys' toys--to see what we can sell and we'll probably get rid of the storage unit, which means selling the things inside or trying to find room in the house for them.

I'm worried.  We have special money set aside for Emerson's therapy, at least, that will cover a couple months worth.  I wish I could start my home Scrap 4 Hire business, but really don't know how to go around advertising it and getting some clients fast.  It's only been a week since I lost my job, but I haven't seen anything I'm qualified for. And since our paychecks just covered our bills and left us money for groceries and gas in our cars, I need to find something that pays just as much or more than where I was (since I had so much overtime at myprior job).  It looks like my ex-boss is not going to write a letter of recommendation for me--after almost 8.5 years with the company and getting fired over something that had simply gotten blown way out of proportion and under false accusations--so I'm scared about finding something "good."  I know I need to be patient and to not give up, but it's hard. 

Today, I'm going to apply to a bunch of jobs online because it seems that the companies who advertise online do NOT want you stopping by in person...they often don't list an address, phone number or company name!

Wish me luck...I think I'm going to need it.  I'll be back to post...maybe next week since it seems I'll have sometime on my hands...and then I can fill you all in on Emerson and what we've been up to with his therapy and at home.  I don't think I've even discussed his OT eval yet!

Until then.....

What is SPD?? (Part 1 - Definition & Classification)

Just as in my foray into the world of autism, most of what I say about Sensory Processing Disorder (SPD) will come from Wikipedia and the book I've read on the subject.  Again, I do not profess to know everything, or much of anything, about SPD and I encourage you to read about and research it on your own if you want to learn more.

[Side Note: I will be going back to ASD subjects, but I wanted to forge ahead and get a few things defined and introduced before getting more in depth anywhere.]

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Sensory Processing Disorder is also known as Sensory Integration Disorder or Sensory Processing Dysfunction.  It is a neurological disorder that causes difficulty with taking in, processing and responding to sensory information from the environment around us.

For those with SPD, sensory information may be sensed and perceived in a way that is different from most other people. Unlike blindness or deafness, sensory information can be received by people with SPD, the difference is that information is often registered, interpreted and processed differently by the brain. The result can be unusual ways of responding or behaving, finding things harder to do. Difficulties may typically present as difficulties planning and organising, problems with doing the activities of everyday life (self care, work and leisure activities including work and play), and for some with extreme sensitivity to sensory input, sensory input may result in extreme avoidance of activities, agitation, distress, fear or confusion.

SPD is a widely acknowledged theory, but there is much controversy over whether or not it sould be considered a distinct diagnosis or as a feature of separate diagnosis.  It is not recognized in any standard medical manual such as the DSM-IV, but it is an accepted diagnosis in Stanley Greenspan’s Diagnostic Manual for Infancy and Early Childhood and as Regulation Disorders of Sensory Processing part of the The Zero to Three’s Diagnostic Classification.  SPD is often associated with a range of neurological, psychiatric, behavioral and language disorders.  There is no known cure; however, there are many treatments available.

When you consider all the things your body must do to interspret a sensory message correctly, you realize just how amazing it is!  As listed in the SPD book I read (see side bar to left; it's called Sensory Integration Disorder in the book), successful sensory integration involves the following:

   * Receiving the sensory information successfully (all the things you see, hear, smell taste, and feel start out as waves of light or sound, chemicals in your nose or on your tongue, or pressure against nerve endings in your skin. Those sensations are translated into electrical impulses that zip along neurons in your brain)

   *Interpreting all this sensory information correctly

   *Combining information from different senses to create a complete picture

   *Deciding on a response based on information from all sources

   *Executing that response by sending electrical impulses back out to the muscles and limbs

And we all do this each and every day, constantly, without having to give it a thought...it's automatic and we don't even notice that it's happening!  For someone with sensory processing problems, it's awfully hard to ignore.  They might have trouble:

   * Receiving sensory information successfully if his/her brain needs a larger than normal amount of information before it reacts, or reacts too strongly to a small amount of info

   *Interpreting sensory information correctly if not enough info gets through, or so much information gets through that it is overwhelming and cannot be interpreted

   *Combining information from different senses if info from some of the senses isn't successfully received or correctly interpreted , or info from different senses can't be put together

   *Deciding on a response if s/he doesn't have a complete picture to base it on, or if her/his brain hasn't developed and/or stored a plan for action

   *Executing that response if his/her brain doesn't know what his/her muscles are up to already

Our world and the world of someone with sensory processing problems are different, built by unique brains out of the blueprints provided by the senses.  For someone with SPD, the world might seem bigger, louder, scarier than the way we interpret them, and other things we notice might not register at all!

Let's look briefly at the Seven Senses that send our brains the information about our surroundings and our bodies placement to our brain for processing.  And yes, I said seven. (These are taken from the same Sensory Integration Book at left and discuss some of the possible hyper- and hypo- symptoms of someone with SPD.  Hyper- being when they receive too much info, and Hypo- being when they receive too little info):

   1) Gustatory Sense (Taste).  Craves very strong, sharp or sour flavors; refuses all but the blandest of foods; can't tell the difference between foods; eats or sucks on non-food items

   2) Olfactory Sense (Smell).  Has trouble telling the difference between smells; Can't readily identify odors; has extreme reactions to certain smells; has no reaction to strong smells

   3) Auditory Sense (Hearing).  Has extreme reactions to sirens, alarms, vaccuum cleaners; can't calm down in noisy rooms; doesn't hear or respond to your calls if there are too many other sounds in the room

   4) Visual Sense (Sight).  Can't stand bright lights; feels agitated around bright colors or busy rooms; can't pick items out of a detailed picture or background; can't see how a puzzle goes together

   5) Tactile Sense (Touch).  Has extreme reations to clothing, combing, hair cutting, dental work; doesn't react enough to pain, cold, discomfort; avoids hugs, tickles, cuddles

   6) Vestibular Sense (Balance).  Either fears or craves swinging; becomes upset when tipped backwards; fears heights and having feet off the ground; loves to spin around repeatedly and/or rock back and forth

   7) Proprioceptive Sense (Body Position).  Regularly bumps into things accidentally or on purpose; has trouble planning simple sequences of movements; jumps or rocks; likes hard hugs

Since sensory integration involves receiving and interpreting information from the senses and combining the info to form an accurate picture, problems with one sense can cause problems with all sensory input and output.  If the feel of clothing is a distraction, it's going to affect the ability to listen and see detail and to stay still.  If someone feels off-balance, it's going to effect the way things are seen, how movements are coordinated, and whether or not they are able to hear things and to what extent.  Because of this, it's important to look for patterns of behvior across senses, especially strong over- or under-reactions.

Let's go back to my friend Wikipedia to look at the Classifications fro SPD.  There are three primary diagnostic groups:

Type I - Sensory Modulation Disorder (SMD). Over, or under responding to sensory stimuli or seeking sensory stimulation. This group may include a fearful and/or anxious pattern, negative and/or stubborn behaviors, self-absorbed behaviors that are difficult to engage or creative or actively seeking sensation.

Type II - Sensory Based Motor Disorder (SBMD). Shows motor output that is disorganized as a result of incorrect processing of sensory information affecting postural control challenges and/or motor planning dyspraxia.

Type III - Sensory Discrimination Disorder (SDD). Sensory discrimination or incorrect processing of sensory information. Incorrect processing of visual or auditory input, for example, may be seen in inattentiveness, disorganization, and poor school performance.
 
Furthermore, sensory modulation problems include

• Sensory registration problems - This refers to the process by which the central nervous system attends to stimuli. This usually involves an orienting response. Sensory registration problems are characterized by failure to notice stimuli that ordinarily are salient to most people.
• Sensory defensiveness - A condition characterized by over-responsivity in one or more systems.
• Gravitational insecurity - A sensory modulation condition in which there is a tendency to react negatively and fearfully to movement experiences, particularly those involving a change in head position and movement backward or upward through space.

 Sensory Processing Disorder is a common symptom of autism spectrum disorders, and might be more common in autistic children than in adults with autism.  The trend is more toward undersensitivity than oversensitivity or sensory seeking in ASD, but seeking and oversensitivity do, of course, occur as well.

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I hope this gives you a brief overview of what SPD is and how it can effect those who have it.  We can talk about different therapies later on, and I might go into a few details here and there with it.  But, for now, this should be more than enough to you started!

Take care!

The Good, The Bad & The Ugly...

...but not necessarily in that order.

It was a rough weekend.  All seemed well at first.  We went to the IEP Bootcamp, 3 hours long and quite tiring from all the info we were bombarded with, but I had won one of the door prizes and received $25, so we decided to treat ourselves out to dinner Saturday night...something we rarely do anymore because it's just not in our budget.  We got home and my MIL reported that all went well with the boys.  Emerson hadn't taken a nap--nothing new there--but had laid quietly on the couch while watching a cartoon.  Thom was tired, so he went to lay down for a half hr (which turned into just over 2 hours) and I stayed with the boys.  I was tired too, so I laid down to try to close my eyes for a few minutes while Emerson watched Beauty and the Beast and Parker played with his cars.  I looked up at one point and Emerson had fallen asleep sitting up!  He slept for about 30 minutes, but then Thom got up and it was time to get ready to go out to eat.  Emerson fussed a little about leaving until we told him there were french fries involved. LOL

We chose to eat at Ground Pat'i, a local burger place, because it was sure to have food the boys would eat and it was more of a "family" style place in case Emerson had a fit.  Parker was super hungry and hiscrying made Emerson start acting goofy (standing in the booth, poking Thom on the top of the head, giggling and making noises...all signs that a meltdown was coming), so Thom took him for a walk to the car to get some animal crackers for Parker to munch on while we waited for our food.  Food came.  All is good.  Emerson asked for a hamburger and fries; then he asked for black sprinkles (aka pepper...don't ask me where he got "black sprinkles" since we've always called it pepper. He also calls catsup "red dipping" although we've always said catsup).  Thom grabbed the pepper and sprinkled some on Em's fries.  Meltdown.  Emerson looked at me and his poor face just crumpled into tears...open mouth, tears flowing, snot coming out of the nose.  You could see, by the look in his eyes, that he was not in control in anymore.  It was heartwrenching to see and I have tears in my eyes right now thinking of his face.  He doesn't cry like that often--that my-heart-is-broken, sobbing-from-the-bottom-of-the-soul type of cry--and it breaks my heart every time it does happen.  Thom tried to make amends by offering to let Emerson put pepper on his fries or to blow off the pepper he had already put on, but it wasn't until he picked up all Emerson's fries and I transferred my un-peppered fries over to his plate that Emerson finally, and slowly, calmed down.  He was tired...we knew that and probably shouldn't have pushed him into going out to a place he hadn't been before where Parker was fussy, music was playing, lots of people were talking (although we were early enough that there were only a few full tables around us), and there were simply too many things bombarding his senses.  Luckily, the rest of the dinner went OK.

By the time we got home, it was almost Parker's bedtime.  Thom went to rock him to sleep while I let Emerson finish watching his Beauty and the Beast cartoon.  Thom went to bed, telling me to just bring Emerson into our bed instead of putting him down in his room because #1-Emerson would end up with us at some point during the night anyway, #2-I was tired and didn't need to try to sit in the chair by Emerson's room until he fell asleep as I normally do, and #3-I needed to get to bed early and the only way Thom could make me do that was if I went to bed when Emerson did (he knows me well...I would have been up typing blog posts!)  I told him I wasn't sure it would work, but agreed because I was tired and climbing into bed early sounded really, really good.

The movie was done about 8:40, but Emerson wanted to read a book and sleep in his own bed.  All the better, I thought.  Of course, after we finished the book, he decided he wanted to sleep with Mommy and Daddy in the Big Bed, so away we went.  As he laid down between us, he started his usual talking to himself and moving around.  Thom told him to be quiet and lay still.  Emerson didn't.  Thom repeated himself.  Emerson moved around more.  And because I knew Thom would get annoyed and do or say something that would make matters worse with Emerson, I too started telling Emerson he had to lay still and go to sleep. 

That's when the hitting started.  I had my eyes closed and, out of no where, Emerson punched me in the nose.  Thom saw it and tried to grab Emerson's hand.  Emerson laughed and punched me in the eye.  He was now sitting up and laughing.  His signature meltdown was fast approaching.  Once we reach the laughing and trying to hit or punch the face stage, it's too late to stop a meltdown.  Thom tried to restrain his arms and Emerson arched his back and yelled  little.  He kept saying "No" and as soon as Thom let him go, Emerson lunged at me and punched some part of my face...my eyes, my nose, my cheek.  We tried to talk calmly with just a few words and very clear directions...Stop Hitting, Lay Down, Take a Deep Breath, Don't Punch Mommy.  I told Thom hat Emerson needed to go back to his own room, but Thom disagreed and said that Emerson just needed to calm down and go to sleep because he tired.  I then said that since Emerson was only hitting me, I was going to remove myself from the situation. 

I sat on the couch while Thom tried to rock Emerson on the "safe spot" he had created for Em on the floor near our bathroom (I still don't quite understand what makes it "safe" other than it's close to our bed and close to the night light in the bathroom).  Eventually, Emerson said he had to go potty and he seemed much calmer afterwards, so I went back in to lay down with them.  Once again, Emerson started talking to himself and playing with Teddy Head (his comfort toy he's had since infancy) above his head.  Thom told him to be quiet, lay still and go to sleep.  This time I spoke up and told Thom that this was Emerson's bedtime routine...it was his way of calming himself and working through the day in preparation for sleep.  He does it every night.  I'll hear him whispering in his bed, I'll see shadows of his arms moving around as he lifts up Teddy Head and plays with him.  It's his normal routine that he needs.  Thom said he needed to learn to lay still.  Well, that wasn't going to work and, as if to prove it, Emerson punched me in the eye.

That was it.  I picked up Emerson and told Thom that I understood the theory behind having Emerson start out the night in our room, but it wasn't what he was used to and it was setting him off.  Off to Emerson's room we went.  I laid down with him and he was almost immediately calmer.  I laid next to him and let him talk as he needed, move as he needed.  After a while, he reached over, stroked my cheek and said, "I didn' mean to hit you, Mommy."  "I know you didn't, honey," was my response as the tears came to my eyes.  "I'm sorry for fighting you," he whispered as he snuggled close.  I put one arm under his head, bending it so my forearm went all along his face and my hand was on top of his head.  He pressed his back into my front, so I wrapped my other arm all the way around his torso and held him firmly against my body.  He was asleep within 5 minutes.  Makes me think again about the benefits a weighted blanket might have for him.

On Sunday, Emerson stayed home with Thom while Parker and I went grocery shopping.  I was in high spirits on the way home, with plans for an Arts & Crafts afternoon, but all that changed as soon as I walked through the door.  Emerson had been bathed and put into pajamas.  He had gone to the bathroom and come running out later without his pants on, hitting at the air with his arms and crying hard.  Thom went into the bathroom to find Emerson had gone poopy in the potty...and in his underwear and a couple places on the floor.  We're still not sure what happened exactly, but Emerson was very upset. 

Bowel movements have always been difficult for Emerson.  He waits until the last minute, which often causes accidents both at school and at home.  He also doesn't like to wipe, saying that the toilet paper hurts him.  It's a battle ground when we know he has to go poopy and he just won't.  We insist and try to make him, he refuses and starts to fight back.  He often puts off going pee until it's almost too late sometimes too.  I don't if it's a sensory issue--that his body is unable to "read" the senses telling him that he needs to go to the bathroom--or not.

As he sat on the couch watching cartoons, we could tell that Emerson looked very tired.  Several times, he reached over and started slapping Thom in the face and on the head.  The decision was made to take him into our room, put a video in and Thom would stay with him and take a nap with him.  It was quiet for a long time, and then there was a lot of noise and commotion.  Quiet, and then noise.  Finally, Thom came out shaking and in tears.  He said he just didn't know what to do anymore...didn't know how to handle him.  I looked past him and Emerson was laughing and jumping all over the bed.  I handed Parker to Thom and told him to put the little one to bed while I tried to get the big one to nap.  I carried Emerson--kicking and hitting-- into his room and shut the door. 

The next hour and a half...maybe closer to an hour and 45 minutes...were not much fun at all.  I was punched several times, directly in the eye, and more than once he told me he was going to poke my eyes out.  Once, he hit me in the eye hard enough to make tears come.  As he apologized and started to wipe my tears away, he stuck his finger in hard and said, as he laughed, that he was going to take it--my eye--out.  That is probably the hardest sentence I've had to type on this blog yet.  This behavior that we're suddenly seeing is not the Emerson we know and love.  I don't know where he came from, but it's only been maybe the last month that he has exhibited behavior like this and it's getting worse as time goes on.  It terrifies me.  I don't know what to do with this; I don't know how to handle him when he's like this.  It's as if Emerson is not there at all, as if he can't even hear us talking to him.

Anyway, I finally convinced him to lay under the beanbag chair (I was thinking again about that weighted blanket) by telling him it was a tent and that we were hiding from dinosaurs.  It seemed to be working...he was getting calmer, although he wanted to peak out and shoot at mean dinos.  And then Thom came in with the mylar balloon his parents had brought for the boys the day before.  Why he thought having a balloon in the room would help calm Emerson down I will never understand because all it did was make Emerson jump out from under the beanbag and want to play with the balloon.  It took forever, along with plenty of punching, kicking, biting and pinching, to get him calm again.  Finally...finally...he laid still next to me.  I think his body had just finally given up; he had no more energy.  Still, he wouldn't close his eyes.  He never does.  Even when he's tired and goes to bed without much fuss, he lays there with his eyes open until they close in sleep.  He tells me that he can't close them while he's trying to go to sleep.  "They have to just stay open, Mommy."

The rest of the day was not much different.  Lots of wild attitudes, hitting, being defiant.  We decided on no more cartoons for him.  Period.  But to allow him to watch his dinosaur videos for some quiet time.  He watched one tonight and was quite calm and went to bed without a lot of trouble.  Maybe dinosaurs are his safe zone, the place he can go that is familiar and comforting.  I'll work with that theory for a while and see if it gets us anywhere.

But this whole weekend has made me worried about what will happen tomorrow when he goes back to his day center.  On Friday, his teacher had written me a not that said, "Awful. Rude. Defiant. Deliberate Behavior"  When I asked the other teacher in his room what was meant by the note, she said she wasn't sure because she wasn't in attendance at the time, but Emerson had torn a poster off the wall and screamed quite loudly and a teacher from another class had to come in and remove him.  When I asked Emerson about his day--and it took quite a few questions in a round-about manner, but I've gotten fairly good at that!--, he said his teacher had gotten mad at him because he tore a picture on the bathroom door.  He did it because the other kids were being really loud and yelling "Me, Me, Me" during circle time (I guess to be picked for something) and it hurt his ears. 

The night before, Emerson had been awake from 2:30 until just after 5am, so I knew he was tired going into school that day.  I should have warned his teacher instead of just mentioning it to the co-director who doesn't relate much of anything you tell her to any of the teachers, so hat's my fault.  When he's tired like that, his sensory processing is even worse than usual.  And his auditory processing is so sensitive to begin with!  Emerson also told me that he was taken into the baby room.  Now, in a way this is good because it's much calmer and quieter in there (there aren't many babies and they don't cry very often), but it also made me mad because I know the woman they called to take him out often tells Emerson that she's going to put a diaper on him because he's acting like a baby.  I've mentioned this in passing to the director who, true to form, says that particular woman would never say that and Emerson is making it up.  When I said I've been present when she's said it to him on at least one occasion and, furthermore, the woman herself admits to saying it, the director changed the subject.  I could push my case, but I'm tired and broken down.

But the note on Friday from Emerson's teacher made me think of all the people in our lives who don't, or won't, understand Emerson's differences.  There is the one who told me that Emerson doesn't look or act autistic (I think along the lines of Rain Man), the one who said that they had been present when Emerson was around a lot of noise and it never affected his behavior for the negative (and this, to that person, was proof that there was nothing of truth in his having autism), the one who asked if we were going to continue to see our social worker so we could learn how to parent our children to make sure Parker didn't end up the same way, the one who said there were so many cases of autism because parents were trying to label the children with something instead of taking the blame for poor parenting skills, the one who said he had met my child and could tell that the psychologist and occupational therapist had no idea what they were talking about, another who claimed that all of Emerson's problems were the result of his grinding his teeth at night and that there had been studies done that proved it, the person who said we should put a rubber band around Emerson's wrist and pull it back and snap it whenever Emerson started to misbehave, this was the same person who told us to put a lock on the outside of Emerson's bedroom door to keep him in at night and teach him to sleep in his own bed, the one who said that if Emerson really is autistic then he needs to be put in a special class because he has no right to hold up other students and it's unfair to expect the teacher to have to deal with problems like that, the one who makes fun of the workshops we say we're going to attend, the one who says we're reading into things and making Emerson's behaviors fit a diagnosis so we can make excuses for him, and those are the ones I can remember at the moment.  Other comments have been made and most of these are from the same sources.  Of course, there was the couple next to us on Saturday night who gave us dirty looks when Emerson started crying over the pepper incident.  You could tell by the way they looked at us that they thought Emerson was a spoiled brat.  And I'm sure we'll encounter more people like that in the future.

It makes me very angry because I find myself making excuses for Emerson when I really want to tell them to quit being ignorant assholes and read up on the subject.  I haven't lived in very many places in my life...grew up in Catawba, WI; lived in LaCrosse, WI and Fountain City, WI and Winona, MN before moving south, but I was exposed to a wide variety of people from all over the country and from a lot of different walks of life during that time and I can tell you one thing:  I have never met more ignorant, prejudiced, narrow-minded, opinionated (and not in a good way) people than I have down here.  No, they're not all like that...but there sure seems to be a high concentration of them down here.

But, as discouraged as I get with people, I still am Blessed to have some truly wonderful people in my life.  My parents and sister, who never once voiced disbelief or were in denial over Emerson's diagnosis but who, on the other hand, have helped point out examples of things they noticed and had questioned that fit into the characteristics of autism.  My brother- and sister-in-law in Shreveport who always have encouraging things to say and who have offered to take both boys for a weekend so Thom and I can get away (something we have NEVER done. In fact, I can count on two hands the number of times we've been out on dates since Emerson was born...and the majority of those were for meetings or work functions!).  My sister-in-law and nephew in New Mexico who graciously offered their knowledge and experience any time we need it (my nephew has Aspergers).  My father- and mother-in-law who we can rely on to come down from Pineville (as they did on Saturday) to watch the boys so we can go take care of business.  And my mother-in-law paid me a wonderful compliment this Saturday when she said that, thanks to reading this blog, she felt more knowledgeable and better prepared for taking care of Emerson.  And my dear friend, Alicia, who is always here for me with an encouraging word, a shoulder to cry on and ear that will put up with all my complaining.  She is quite an amazing woman with 2 gorgeous daughters and an adorable son.  She does far more than I do, and I don't know she pulls it off. 

Last Monday when I was having a horrible day because of financial problems and a huge fight with Thom, Alicia happened to send me a very empowering, very uplifting e-mail and I want to share it with you:

Just wanted to say that you are a magnificent woman!!!!  When I think of what you are going through and when I read your blog posts about what you are doing for your family, I am in awe.  You are a STRONG woman.  You are an AMAZING mother.  You go above and beyond--and even to the ends of the earth if necessary--for your sons.  The last several months have been so overwhelming for you.  It's been one thing after another, and you just keep going.  You are weathering the storms.  You have persevered.  You have taken these....."wrenches"....that life has thrown at you, and you are taking them head-on.  You are determined......determined to make a better life for your son.  You are determined to ensure that Emerson has the best of everything he will need to get through life.  Nicole, you are an amazing mother!  You are learning everything you possibly can; you are absorbing it all.  You are doing better, I think, than most people would.  Better than me, that's for sure.

When you look in the mirror, remind yourself that you are the most loving, caring, strong mother your sons have.  You are providing them with everything they need....and more.  Please give yourself a break every so often.  And let Thom help you.  :)  You deserve a break.  Don't feel guilty for taking an hour to yourself.  To take a hot bubble bath by candlelight, with music blaring into your brain, a glass of wine, and a trashy Harlequin romance. (Ok, maybe not a Harlequin because seriously?  But I think you get the point.)  If you want to have yourself a good cry, I'm never far away. 

Strong, resilient, magnificent, loving, compassionate, smart, amazing.  You are all of those things and more.  I admire you so much.  It brings me to tears--even now--when I think of all that you are going through, and you just keep on going.  You an amazing mother, Nicole, and--like your sons--you deserve all the best.  You truly do.  Love you!!!!!

Forgive me, dear girl, for sharing this.  But it has helped me so much...more than you can ever know.  I have it printed out and it is kept on the inside of my binder where I can take it out and read it whenever I'm feeling low about things.  And each time, just as it did now when I read it again, it brings tears to my eyes.  Thank you for taking the time to write this to me.  I love you, chica!

I love all of you.  Whenever I come home from work and feel as if I don't have a support system and that there is no one around me who understands or is willing to try to understand, I remind myself that I have all of you...and I'm grateful. 

IEP Bootcamp

Yesterday morning was our IEP Bootcamp.  It was held at the ASAC (Autism Society-Acadiana Chapter) and our presenter was Mylinda Elliott from Families Helping Families in Lake Charles.  Mylinda has 5 children, all of whom have a learning disability of one kind or another and 2 of whom are autistic--one on the low end of the spectrum (and I think she's non-verbal) and the other on the high end of the spectrum with Aspergers.  Just from listening to her talk, and I had already had a conversation on the phone with her prior to the Bootcamp, you can tell she is a real go-getter who won't take nonsense from anyone.  She really knows her stuff and would be a wonderful advocate to work with...had she been from the Lafayette branch of Families Helping Families.  Of course, I can still contact her with any questions or concerns.  I haven't met the Lafayette advocate yet, but I can only hope she is as strong-willed as Mylinda!

We were a smallish group, which was good because the room we were in was, shall we say, quite cozy.  Let me tell you, I was shocked by the number of parents who came in saying they had children 8, 9 or 10 years old with a learning disability of some kind (Down's Syndrome, Autism, and one woman had a daughter who had benign tumors that grow all over her body, including on her brain, poor thing!) and they all said the same thing...we just go in and listen to what they tell us they're putting on our IEP and then sign it because we figure the school is doing the best for our child. !!!!!!!!!  Frankly, I was shocked.  Here were people whose children have always had IEPs and the parents have never been involved other than to sign their names to them!  And it wasn't as if they were satisfied...they all had quite serious concerns about what was going on.  And it took them 4, 5, 6 years to do something about it?  To learn more?

Maybe they've never heard of a little something called the World Wide Web or a library.

I really don't get it.  These are your children.  They need extra help in school because of a learning disability.  And you're just going to trust the school system to know your children inside out and backwards?  You're going to trust that the school system knows what your goals are for your child and his or her future?  You're going to trust that the school system is naturally going to live up to the No Child Left Behind slogan?  Well,  you're a hell of a lot more trusting than I am then!

And maybe for me part of it is a trust issue.  I don't trust that someone else is going to do their job unless someone is behind them, paying attention and holding them accountable.  I don't trust the school system to find out everything they should to know about my child's needs unless I tell them.  And I'm going to tell them in writing and hand it to the appropriate person myself, so I know they've received it.  I'll even request a meeting so we can go over it together if I feel it's necessary.  I don't trust that anyone whom I request to send in paperwork is going to do it when they say they will, so I'll do a follow-up to see if it's done and I'm going to request a copy for my own records.  We've yet to even reach the IEP stage and I already have 3 binders with our relevant info and paperwork.

Maybe the other part for me is the need to educate myself.  I want to know how the system works.  I want to know my rights as a parent and my child's right as a student.  I want to know what the school system is supposed to be doing, what they have to do by law, and what they can do to ensure even more help for us should we need it.

I don't think this is odd...I think this is being a responsible parent.  And while I did not think poorly of these parents who are just now trying to educate themselves and do better for their children, I will admit to feeling sorry for them and their kids.  From the stories they told, it sounded as if the school system was not playing by the book and was getting off with doing as little as possible for these kids.  It's a real shame and just further proof in my mind that I have to go in knowing my rights and having all my ducks in a row.

Anyway, back to the IEP Bootcamp.

Can I just say...Wow, what a crapload of info!  I felt overwhelmed by it before because I really knew nothing whatsoever about IEPs; and now I feel a little more educated, still overwhelmed and a little bit afraid.  It just seems as if there is so much I'm going to need to know, so much preparation to be made, a lot of parental rights I need to read up on, and a lot of follow-up and "babysitting" that will need to be done afterward.  I've gotten all worked up about it and we haven't even received word from the Parent Child Center yet that Emerson qualifies for help! LOL

We were given a whole binder of info that I've yet to read through, but it's going on my master list of things to look up and learn about.  Mylinda made references to several laws, agencies and terms that I wrote down to look up later.  She talked about so many ifs, ands, buts and how-tos in regards to this whole process that my head is still spinning.  Part of me feels like a bunch of random tidbits was thrown at us and we now have to go straighten them ll out and try to make sense of them.  There were enough of us that it was impossible for her to answer all the individual questions, and each time one was asked and we were put a little off-course by her brief explanations, I got more confused.  I'm the type of learner who needs everything put forth in a clear, concise way with time for questions after.  All the interruptions made it difficult for me, so I'm grateful for the binder because almost everything I'll need to know is in there.  I also learned that Families Helping Families has online workshops!  (I also found some online lectures from Dr. James Ball when I visited his site, so there's another source of info!)

It's beginning to look like I should take a week off of work just to get somewhat caught up on the learning I need to do!

Dr. James Ball, Ed.D., BCBA-D

Last night, Thom and I attended our first Autism related presentation.  It was hosted by the Autism Society-Acadiana Chapter (ASAC) and featured Dr. James Ball, Ed.D., BCBA-D as the speaker. (For those that aren't up on this kind of thing--Ed.D. is Doctor of Education, BCBA-D is Board Certified Behavior Analyst Doctorate -- I had to look up that last one!).

The presentation was titled "Techniques for Systematic Teaching and Reducing Behavior Challenges in Students with an Autism Spectrum Disorder - A Positive Behavioral Support Approach".  It was geared more towards teachers although there was plenty of info for parents to use at home as well.  Here are the goal and objectives of the presentation as laid forth by ASAC:

Goal: Understanding systematic techniques for teaching students on the autism spectrum

Objectives:

• Participants will be able to identify 3 reinforcement techniques to assist an individual on the autism spectrum in the learning process
• Participants will be able to implement 3 specific teaching techniques that will assist an individual on the autism spectrum in the learning process
• Participants will be able to design an individualized teaching program that will assist an individual on the autism spectrum in the learning process
• Participants will be able to design an individualized behavior plan program that will assist an individual on the autism spectrum in reducing problem behavior through a Positive Behavior Support Plan.  

 Dr. Jim was a fabulous speaker.  He has been working in the field for around 25 years and has worked with the whole gamut--from 0-3 years, young school age children, tweens, teens, he currently has 3 he works with who are in college, and his oldest autistic client is now 65!  He has dealt with all ranges of abilities from non-verbal children, including one he has seen since he was 3 and is now 19 and still is unable to communicate verbally, to high-functioning children, some of whom are now in the workforce, married and starting families of their own.  He has lectured nationally and internationally, published in a variety of areas from early intervention to trauma, and has served on a plethora of boards and panels in autism related organizations, and is currently the Chair of the Autism Society of America Board of Directors.  His list of oragnizational work is impressive. 

He also happens to be president and CEO of JB Autism Consulting, which offers private consulting to organizations, families and schools in the areas of behavior, classroom management, curriculum development, social skills development and parent training, to name just a few.  His philosophy, as set forth on his website, is 

It's all about people and relationships...

In order to be effective with any person, on the spectrum or not, you must first treat them with respect.  Show them you are there to help, not to change who they are.  Let them see and understand their strengths while shaping their challenges, which may be holding them back from being successful.

No matter whom it is I am working with, a person with autism, a family, an administrator, or a staff person, the bottom line is: It's all about team work, and getting everyone on the same page.  Making sure every one is headed in the right direction on the same track.

...and, follow up is always the KEY

I've added his book, Early Intervention & Autism: Real-Life Questions, Real-Life Answers, to my Wish List and will look at some of the articles he's written for Autism Aspeger's Digest.

Obviously from the title of his presentation, Dr. Jim talked a lot about behavior and stressed the importance of getting to the cause of the behavior and pointed out the common mistake of just treating the symptoms.  Often, if you're just treating the symptom and the root cause is not being addressed, all you're going to accomplish is stopping one negative behavior and transferring it to another.  Example: Little Toby leaves his seat and goes up to the teacher when she's trying to lecture during classtime.  He gets punished for this by having to sit in time out.  He stops getting out of his seat, but now he is knocking things off his desk instead.  The original negative behavior has stopped, but it has transferred to another negative behavior.  The teacher did not look at why Toby was doing what he was doing...she was looking for a way to stop the behavior she didn't like--getting up from his desk during classtime.  If she had looked at the cause of his behavior--Toby was seeking attention--she could have redirected him into a less disruptive behavior such as raising his hand when he needed attention.  This still might not be ideal in a classroom situation, but it is less disruptive and can be built on from there.

[Side Note:  Without knowing it, Thom and I had started to do this with Emerson.  When Thom and I are talking, Emerson will frequesntly come up and demand our attention.  Thom's solution was to stop our conversation and turn to Emerson; my solution was to ignore Emerson and continue speaking or to tell him, "Go play. Mommy and Daddy are busy."  Both were ineffective and the wrong way to handle the situation.  Thom was teaching Emerson that it was socoially acceptable to come up, interrupt a conversation and expect undivided attention; I was teaching him that what he had to say didn't matter and that we were too busy for him.  During our session with Jessica, Emerson came up and started talking.  Jessica turned to him and said, "Emerson, when Mommy's talking to someone and you want to tell her something, maybe you can say, May I have a turn talking, Mommy?"  So, when I went home that night, I told Thom we were going to start trying it.  Now, when we're talking, Emerson comes up and says, "Can I have a turn talking, Mommy/Daddy?" and we tell him, "Yes" or "Wait until Mommy/Daddy is done and then you can have your turn" and he will stand and wait until we've finished our sentence at least and then we'll turn to him and say, "What did you want to tell us, honey?"  It's a step in the right direction.  He's still coming up and interrupting us, but he no longer expects us to stop and pay attention to just him.  He'll wait until we've finished the point we were making/sentence we were in the middle of uttering or whatever, before he speaks.  We'll slowly stretch out the time he has to wait for his turn and, eventually, we hope that he won't interrupt at all, but will come up and wait for us to finish...knowing that he will get his turn, he just has to wait.]

Dr. Ball listed 4 Functions of Behavior:  Communication, Self-stimulation, Attention Seeking, Escape/Avoidance.  All behavior can be classified into one of these areas.  Our job as parents and educators is to define the behavior as specifically as possible, collect data, do a Functional Behavioral Assessment, establish a hypothesis, test that hypothesis, and review the data for effectiveness.  These are the Behavioral Treatment Guidelines that Dr. Ball uses.  (I'm not going in depth into any of this...just giving you a brief overview of what he discussed) 

It is important to keep in mind that there are no quick fixes when trying to change negative behavior.  Especially with autistic kids when routines are key, it can take several months to over a year to change some behaviors.  It is also important to stop yourself from kicking back and relaxing if you find something that works; these kids are ever-changing...you need to stay 2 to 3 steps ahead of them to ensure the program will continue to work.  you need to alter it as they grow and change.

I'm really glad we were able to go listen to Dr. Jim.  It's a shame we were unable to stay after to meet some of the other parents, some of the teachers present, and speak with Dr. Ball himself.  I did meet Vickie, however, who is the Admin Asst at the ASAC and whom I've talked with on the phone several times.  She is very bubbly and nice, and I can't wait to get more involved with the local chapter of the Autism Society!

So, What Exactly IS ASD?? (Part 3-Diagnosis)

Here we are with the third installment on defining--or attempting to define--ASD.  If you missed them, you can always go back and read (Part 1-Definition & Characteristics) and/or (Part 2-Classifications & Causes).  I think I was going to discuss Diagnosis and Management in this post, and maybe overview Causes again.  Let's dig right in, shall we?

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

Diagnosis is based on behavior.  It can be behavior observed by a trained clinician or through interviews by parents or other caregivers who have observed the child.  There are several diagnostic instruments in use, which I will discuss briefly a little later on.

Autism is defined in the DSM (Diagnostic and Statistical Manual), a publication by the American Psychiatric Association that sets forth standard criteria for the classification of mental disorders.  The current edition, DSM-IV-TR (Text Revision of the DSM Fourth Edition) was published in 2000.  The next edition, DSM-V, is not due for publication until May of 2013.  Autism falls under the prototype Pervasive Developmental Disorders.  Below are the criteria that must be met for a positive diagnosis of Autism:

A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):

(1) qualitative impairment in social interaction, as manifested by at least two of the following:

(a) marked impairment in the use of multiple nonverbal behaviors, such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

(b) failure to develop peer relationships appropriate to developmental level

(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)

(d) lack of social or emotional reciprocity

(2) qualitative impairments in communication, as manifested by at least one of the following:

(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)

(b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

(c) stereotyped and repetitive use of language or idiosyncratic language

(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

(3) restricted, repetitive, and stereotyped patterns of behavior, interests, and activities as manifested by at least one of the following:

(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

(b) apparently inflexible adherence to specific, nonfunctional routines or rituals

(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting or complex whole-body movements)

(d) persistent preoccupation with parts of objects

B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

C. The disturbance is not better accounted for by Rett's disorder or childhood disintegrative disorder.

And for a diagnosis of Asperger's Syndrome (whose major difference is there is no major delay in language development or in curiosity about their environment):

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

(1) marked impairment in the use of multiple nonverbal behaviors, such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

(2) failure to develop peer relationships appropriate to developmental level

(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)

(4) lack of social or emotional reciprocity

B. Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

(2) apparently inflexible adherence to specific, nonfunctional routines or rituals

(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

(4) persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

F. Criteria are not met for another specific pervasive developmental disorder or schizophrenia

Diagnosis can be made by using a number of different evaluative tools in the form of questionnaires, which might be answered by parents, caregivers or a trained evaluator, all of whom base the answers on the observations made and interactions with the child being evaluated.  The most popular are the ADI-R (Autism Diagnostic Interview-Revised), ADOS (Autism Diagnostic Observation Schedule), and CARS (Childhood Autism Rating Scale).  As part of Emerson's evaluation, we also filled out the GARS (Gilliam Autism Rating Scale) form.  Descriptions of each are below.

"A pediatrician commonly performs a preliminary investigation by taking developmental history and physically examining the child. If warranted, diagnosis and evaluations are conducted with help from ASD specialists, observing and assessing cognitive, communication, family, and other factors using standardized tools, and taking into account any associated medical conditions.  A pediatric neuropsychologist is often asked to assess behavior and cognitive skills, both to aid diagnosis and to help recommend educational interventions." (Wikipedia)

[Side Note:  The pediatricians we know if down here in Louisiana would not do an ASD assessment.  We called our local Autism Society chapter and spoke to several people "in the know" and asked for referrals to places who could evaluate a child Emerson's age.  No one has ever mentioned to me anything about a neuropsychologist getting involved.  In fact, half the stuff I'm reading as I learn has not been mentioned to me as far as further evaluations, treatment and therapy ideas, etc.  It makes me wonder if I need to be calling around to more places!  Lesson learned: Do your research and get a second opinion or push for more advice/evaluations if you feel that something is missing in your initial eval.]

Diagnostic Tools (Wikipedia)

ADI-R (Autism Diagnostic Interview-Revised): a structured interview conducted with the parents of individuals who have been referred for the evaluation of possible autism or autism spectrum disorders. The interview, used by researchers and clinicians for decades, can be used for diagnostic purposes for anyone with a mental age of at least 18 months and measures behavior in the areas of reciprocal social interaction, communication and language, and patterns of behavior. 

The interview covers the referred individual’s full developmental history, is usually conducted in an office, home or other quiet setting by a psychiatrist or other trained and licensed professional, and generally takes one to two hours. The caregivers are asked 93 questions, spanning the three main behavioral areas, about either the individual’s current behavior or behavior at a certain point in time. The interview is divided into five sections: opening questions, communication questions, social development and play questions, repetitive and restricted behavior questions, and questions about general behavior problems. Because the ADI-R is an investigator-based interview, the questions are very open-ended and the investigator is able to obtain all of the information required to determine a valid rating for each behavior. For this reason, parents and caretakers usually feel very comfortable when taking part in this interview because what they have to say about their children is valued by the interviewer. Also, taking part in this interview helps parents obtain a better understanding of Autism Spectrum Disorder and the factors that lead to a diagnosis.

The first section of the interview is used to assess the quality of social interaction and includes questions about emotional sharing, offering and seeking comfort, social smiling, and responding to other children. The communication and language behavioral section investigates stereotyped utterances, pronoun reversal, and social usage of language. Stereotyped utterances are the few words or sounds that the individual uses and repeats most often. The restricted and repetitive behaviors section includes questions about unusual preoccupations, hand and finger mannerisms, and unusual sensory interests. Finally, the assessment contains questions about behaviors such as self-injury, aggression, and over activity which would help in developing treatment plans.

Autism Diagnostic Observation Schedule (ADOS):  an instrument for diagnosing and assessing Autism. The protocol consists of a series of structured and semi-structured tasks that involve social interaction between the examiner and the subject. The examiner observes and identifies segments of the subject's behavior and assigns these to predetermined observational categories. Categorized observations are subsequently combined to produce quantitative scores for analysis. Research-determined cut-offs identify the potential diagnosis of autism or related autism spectrum disorders, allowing a standardized assessment of autistic symptoms.

The ADOS generally takes from 30 to 60 minutes to administer. During this time the examiner provides a series of opportunities for the subject to show social and communication behaviors relevant to the diagnosis of autism.  Each subject is administered activities from just one of the four modules. The selection of an appropriate module is based on the developmental and language level of the referred individual. The only developmental level not served by the ADOS is that for adolescents and adults who are nonverbal.

Childhood Autism Rating Scale (CARS):  a behavior rating scale intended to help diagnose autism. CARS was designed to help differentiate children with autism from those with other developmental delays, such as mental retardation.  CARS is considered the gold standard in the field.

The CARS evaluation criteria is a diagnostic assessment method that rates children on a scale from one to four for various criteria, ranging from normal to severe, and yields a composite score ranging from non-autistic to mildly autistic, moderately autistic, or severely autistic. The scale is used to observe and subjectively rate fifteen items--relationship to people, imitation, emotional response, body use, object use, adaptation to change, visual response, listening response, taste-smell-touch response and use, fear and nervousness, verbal communication, non-verbal communication, activity level, level and consistency of intellectual response, and general impressions.
This scale can be completed by a clinician or teacher or parent, based on subjective observations of the child's behavior.

Gilliam Autism Rating Scale (GARS): a norm-referenced instrument that assists teachers, parents, and clinicians in identifying and diagnosing autism in individuals aged 3 through 22 and in estimating the severity of the disorder. Using objective, frequency-based ratings, the GARS can be individually administered in 5 to 10 minutes. The assessment consists of 42 clearly stated items describing the characteristic behaviors of persons with autism. The items are grouped into three subscales: Stereotyped Behaviors, Communication, Social Interaction.

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I hope this has helped some of you understand how a diagnosis is reached and the methods used to make a diagnosis.  For Emerson, we filled out the CARS and GARS forms.  Apparently, as we found out later, we were supposed to fill out one and daycare was supposed to fill out the other.  When we picked up the forms from the secretary, she called over someone else to explain to us what we were supposed to do, and that person told us to fill out both.  I think Jessica was surprised when I told her we filled out both as she assumed Pam at the daycare completed one.  This also explains why Pam kept telling me that Jessica never contacted her...they played phone tag for a while, but once Jessica received the evaluations, she didn't need to speak to Pam any more (I'm guessing) since she assumed Pam had done her part by filling out the questionnaire!  Talk about a confused state for all of us! LOL

This post turned out much longer than anticipated (big surprise), so I will continue with a Part 4 to finish up.  I've also gone back and added descriptors to each part so readers know which each of the "parts" covers.

Plan for Part 4--Management (or Treatment/Therapy Options) and possible an overview of past posts.

Charts

It's the end of another weekend.  Ours started out fabulous--Saturday was one of the best days we've had as a family in a very long time.  We actually interacted as an entire family, and everyone pretty much got along.  That does not happen very often in this house. 

Sunday, however, was another story.  It had it's high points, but it's low points were very low.  Emerson has been having problems with violent behavior lately and we're not sure what's going on.  It really started manifesting itself regularly--as opposed to the once in a blue moon we had been seeing of it--last weekend.  When he gets frustrated or upset or overstimulated (we're guessing that this is what's happening when he starts acting out physically, anyway), he's been laughing, acting silly and then kicking and slapping us.  When he really gets going, it changes to punches,biting and even choking.  I can' remember how many times today he slapped us, punched us in the face or stomach or kicked us.  It's gotten to the point that we're loathe to leave him alone when he's playing with Parker.  We used to let them play while we did something in the next room, since they tend to run in and out of whatever room Thom and I are in anyway, but last weekend Emerson bit Parker while pretending to be a carnivorous dinosaur.  He has also started shoving Parker, quite hard, when he doesn't want him in his bedroom. 

We're not sure what's going on with Emerson or why he's suddenly acting this way, but I did create a "Calm Down" area for him in his room where he needs to go whenever he starts acting that way.  It's just a bean bag in front of his bookshelves at the end of his bed, but he can go there whenever he feels the need (or when we send him there) and close the door so no one bothers him.  After he takes some deep breaths (which we've been practicing) and feels calmer, he can come back out a join us.  It's his safe place.  He went their twice on Sunday--after we sent him there--and both times he came out saying he felt better...and was like a whole different child--calm, quiet and no longer acting up.  It seems to have worked on those occasions, at least, but I'm looking forward to Thursdays ABA (Applied Behavior Analysis)workshop.

But that's not why I'm posting tonight.  I wanted to share Emerson's Routine & Reward Charts with you.  I designed them at home and thn brought them in to work for Stephen to print out for me.  He put the 2 charts on Coreplast for me (24"x18" corrugated plastic--what you say yard signs made out of) and laminated all my little pieces for me!  Thanks Stephen!  They weren't quite thick enough for repeated use, so I cut them out, put double-sided tape on the backs, taped them to cardstock and then cut them out again.  A bit of a job considering there were over 250 pieces, but well worth the effort.

First up is his reward chart.  He gets stickers for getting dressed by himself (including shoes), playing quietly during nap time, putting on his pajamas by himself, brushing his own teeth, and picking up his toys without being told.  But he can lose stickers if he hits, bites, kicks or terrorizes the cats.  Once he gets 5 stickers across, he can choose a little treat--mini marshmallows, Pez, gummy bears or a sticker to wear to school.  After filling up all 25 spaces, he gets to choose a big treat--watching any cartoon he wants (even on a school night), watching dinosaur videos on the computer, receive a small dinosaur figurine (my co-worker bought us 3 bags full of little dino figurines, so we're stocked for a while), or go to the bookstore for a treat and a new book.  Here it is:

I ran out of time, so none of these have Velcro yet, but that's how I plan to attach everything.  I have a 20ft roll of Velcro just waiting to be cut!

We're not using real stickers.  Since he's dino crazy, I went online and found a dinosaur store that sold a bunch of figurines and I picked out 25 that he was familiar with.  I added their names and printed them out on circles:

He will be able to choose which one he wants to place on his reward chart.  Here is how it will look all filled in:

Next up is his Routine Chart.  While transitions are hard for him, our daily routine from week to week is pretty much the same and I'm not so sure he really needs this.  However, it will help him get ready for any changes we will have, and it will be a good way to help him learn the days and months as well as keep track of the passing of time.  I did the days of the week in one color and the weekends in a different color.

 I did the months of the year, the days of the week and the numbers 1-31:

 And I did as many different activities as I could think of possibly needing. 

 I forgot the library...and something else that I've already forgotten again!  But I also want to do a picture for each holiday to use with the chart, as well as  generic something--maybe an arrow--to designate which day we're on.

Here's an example of what next weeks schedule would look like (provided I had the Velcro in place so we could actually use it! LOL)

I laid it our like a calendar, but I'm now trying to decide if the Sunday should represent the Sunday from the same weekend as the Saturday we have scheduled--and then we'd do the schedule for the following week on Sunday night) or if we should do the scheduling on Saturday night, in which case the Sunday would be the day following the Saturday we do the scheduling.  Not sure yet.

Hopefully, I'll get the Velcro cut to size and applied to all the pieces so we can begin using them both.  My boss saw these after they were printed and said I should market them! LOL  Might not be a bad idea...maybe I could make a few bucks to put towards Emerson's therapy!

Until next time, my friends....