He Helps Me to Stay Good

I keep waiting to write and update about Kindergarten.  I keep thinking that I haven't given it enough time to really give an accurate picture on how it is going. I keep waiting for the other shoe to drop.  Shame on me.

John is doing exceptional in Kindergarten.  While being denied at our final IEP (about 2 weeks into the school year) with the public school district, words such as "exceptional", "fantastic", and "wonderful" were being used to describe my son.  The evaluators said that he got to parts of the test that they normally don't administer (usually a child will "top out" on a section of the test when they get 3 wrong in a row, or something similar to that---they keep administering that section until he tops out.) Many sections, John was able to get into 5th grade material.  I never doubted his intellectual ability.  I've never questioned his academic ability.  We always knew he was smart, even brilliant in some areas.  Now we had some testing that showed that.  Needless to say, these test results were showing us that his "issues" were not interfering with his ability to learn.  In fact, he was accelerated in many areas.

As far as Kindergarten itself, John has integrated well.  He is focused, attentive, wants to please, and keeps up with the daily demands placed on him.  He is well behaved and socially at the level he needs to be.  He has made a best friend and has a group of buddies.  He is reading 5th grade level words and his reading comprehension is at a 3rd grade level.  He is highly interested in math and doing 1st grade level skills.  He is struggling with his writing and drawing as it relates to spacial relationships.  He is still going to OT and working on fine motor skills, sensory processing, and eating.  He is now one third of his way through the school year and everything is going better than we could have even hoped for, considering that when he was 2 and a half, they told me he was only functioning at a 10-17 month old developmental level.   He was only functioning at one third his chronological age.  They had prepared me that there was a chance he may never function at the appropriate age level of his peers.  There were so many unanswered questions and "what if"s back then.

John is an amazing little boy who has worked so hard to be where he is at.  I am so proud of him.  I cannot tell you how relaxed and at peace I have become on this journey.  I owe it all to faith, prayers and hard work. 

John goes to a private school and on Fridays they go to mass.  One morning, the priest was asking the children where God is.   John raised his hand.  Into the microphone, he said that God is in his heart.  The priest turned to John and said, "what is he doing in there?".  John replied, "He helps me to stay good".

Starting Kindergarten

Lots of thoughts, fears, and excitement have been built up for tomorrow.  I feel like we've spent the last 3 years working towards this one day.  There is a whole life for John past Kindergarten and yet, there is something very special about tomorrow.  I have spent the whole summer, going back and forth between feelings of "he's ready" to "there is no way he's going to be able to do this".

But, no matter how tomorrow goes and no matter how the year goes, John has been preparing for milestones like this since we found out about his at risk behaviors.  We have helped John become ready by being proactive parents when we were told that something wasn't quite right.  Regardless of a label or the absence of a diagnosis, every child struggles with something.  I'm at a point where I can say that I am proud of Bill and I for being proactive in learning what it was John needed to succeed.  I am proud of my boy who is now entering Kindergarten at a private school with his sister.  There was a time when we didn't know if they would be going to the same school or not.

I am proud of the therapists at Casa Colina and the teachers John has had along the way.  La Verne Parent Participation Preschool and My Gym Little Learners were the best pre-K prep for John.  He excelled this year and I'm so thankful that we decided to have him wait a year for Kindergarten.  John has a big heart and this year, he was able to show it off.  The growth he has shown has been amazing and watching him over the last year made me realize that the pathway we went down 3 years ago was the best thing that happened to us.

The people we have met, the programs he's been in, the friends we've made, the stumbles we've had, and the teachers he's learned from has led us to be in a wonderful place today.  It's why I've written this blog.  Being proactive and learning how to help John navigate the world has been (and will continue to be) the best (and hardest) thing I've ever done and will do.  This journey has taught me to appreciate development and not take simple milestones for granted.  We really have only just begun, but I've learned to rejoice in the milestones along the way.  And right now, I want to take a breath and enjoy where we are and not worry about where we are going.  Right now, I want to celebrate his successes.   I don't want a label to set him up for failure  --- I want the journey to build his confidence.

Here's to Kindergarten. 

Imaginary Friends & Pretend Play

John has a whole 'team' of imaginary friends these days.

Gabriel is the first one.  He is older than John (Katie's age in fact).   Gabriel manages a fantasy baseball team.  John is one of the players on Gabriel's fantasy team.  Every day, John tells me if Gabriel benched him for playing bad or if he hit home run and gave Gabriel lots of points.  John will put himself on the DL (Disabled List) or let me know if he is DTD (Day to Day).  He has also pointed out that there are some days when Gabriel wants to trade him. Gabriel is always getting to do things and go places.  If we are going to a baseball game, Disneyland, or grocery shopping, John will tell me that we will get to see Gabriel there because his mom is taking him there too.  He will greet Gabriel at the location and have conversations with him.  He pretends to get text messages and phone calls from Gabriel.

Marvin is another imaginary friend.  Marvin is Gabriel's cousin.  When Katie and John need more players for their game, Marvin shows up.  Marvin is going into Kindergarten, just like John. As time goes on, it seems that wherever Gabriel is, Marvin eventually joins him.

Sarah is John's imaginary girlfriend.  I think Katie had some influence in creating this one.  When I ask John about Sarah, he tells me she is older than him.


Katie and John play make believe all the time.  I bring this up in today's blog because there was a time when John didn't have imaginary play.  Earlier in our journey, I would be asked by therapists and evaluators if John had the ability to imaginary play.  I remember believing that he did because I saw him one time get into our closet and pretend it was an elevator, but for the most part, it was the only example I could ever think of. 

Now the concern is whether or not he will grow out of the imaginary friend as he grows and develops.  Katie had an imaginary friend named Aubreen that still pops up every once in awhile and has companions in her stuffed animals.  When Katie was 4 or 5, she introduced us to Aubreen's brother,  Caden.  Caden was blamed for everything Katie did wrong.  Daddy had to kick him out of the house.  Katie never brought him back, even though Aubreen was still an integral part of her imaginary play.

With Katie, the imaginary friend surfaced when we moved into a new home.  With John, it seemed to be related to a real Gabriel at his school, who would be really friendly one day and then the next, tell John he didn't want to play with him.  I think it was his way in controlling Gabriel's actions.

Kids on the autistic spectrum often have difficulties with imaginary play.  Oftentimes a child with autism has difficulty determining how to use common objects, like a hairbrush or spoon. They often have to be "taught" how to use it. But, they have an even greater difficulty in using them in pretend play.  For example, a typical developing child can pick up a spoon and pretend it's a microphone or use a cardboard box and pretend it's a car.  Many autistic children wouldn't have the ability to pretend in this way.   When testing for autism, an evaluator may give the child a doll and a hairbrush and tell them to use the brush on the baby.  They may give them a doll and a piece of doll furniture and ask the child to put the doll to bed.  The absence of pretend play skills is an indication of autism. Many on the spectrum can only think in concrete terms and more often than not, pretend play skills are very abstract.


Many people have heard about the idea that an autistic child just lines up toy cars.  The idea behind this is that the child sees the toy for what it's made up of, not exactly what it is.  So, they look at the colors, the wheels, how it works, the details... instead of the fact that they can push it and move it and pretend they are driving a real car.  So, the autistic child is lining them up, grouping them, creating patterns, and using them more in a realistic, concrete way, not in the abstract play way.


Play is important because children learn, negotiate, grow, and communicate through play.  Social relationships are gained through play.  Social relationships are hard for children on the spectrum. Oftentimes, social skills have to be taught to these children for them to function on a day-to-day basis.  Things that typical developing kids pick up naturally have to be taught to the autistic child.

With regards to imaginary friends and whether it's healthy or not, many argue that in children, it's perfectly healthy and helps to develop a self esteem.  Concern is usually taken when a teenager develops an imaginary friend or a child plays with the imaginary friend at school instead of his peers.  Imaginary friends are often used for comfort or loneliness when other 'real' friends are not around, often in the home.  Children love fantasy and imaginary friends are part of a fantasy game.  Once the child matures, they will keep their 'friend' more as a fond memory of childhood than a reality of someone with them.

I found this on a website called www.wisegeek.com
"Some parents become concerned when an older child continues to cling to the idea of an imaginary friend. They worry that the child is unable to tell the difference between fantasy and reality, or that the child is developing unhealthy habits associated with his or her imaginary companion. Most of these concerns are unnecessary; the majority of children who have imaginary friends are aware that these friends are not real. Children also do not tend to blame their imaginary friends for bad behavior; more often than not, imaginary companions are role models to the children who invented them.
Problems arise when a child of any age prefers the company of an imaginary friend to spending time with his or her peers. Many children who form imaginary friendships are extroverted and naturally very social, and therefore do not have trouble forming similar bonds with other children in the real world. If a child has no other friends besides the imaginary companion, however, then that child may be using the imaginary friend to combat feelings of loneliness and isolation. Exclusively preferring imaginary companions to real ones may also be an indication of reduced social skills, so children who show these preferences should be encouraged to try new activities and meet new potential playmates."

Occupational Therapy in the Pool

At Casa Colina, John is taking swim with an occupational therapist.  It has been so rewarding on so many levels.  John is 5.  In January, he was not water safe. 

I've had private swim instructors for 3 years try to teach him in my parents pool.  He is good at distraction and a master of manipulation.  He was in charge more than the teachers, having them resort to baby games you'd play with toddlers or use in a mommy and me classes.  He'd sit on the edge or on the step, they'd splash water on his legs and the two of them would sing silly water songs that would end with John being pulled into the pool.  John would love this so much that they would do this over and over.  He wouldn't attempt picking anything off the bottom of the pool, would get disorientated when his head would go under water, and could not hold his breath. He hated doing anything with the kickboard and refused to do "big arms".   He'd swallow lots of water and most attempts to teach him to close his mouth just didn't work.  We'd resort to him wearing a life vest every time he went in the water.  He had no fear at other times and would want to jump off the edge, but then do nothing to try to swim to the side.  The life vest made it more fun for him and put us at ease.  But, that doesn't solve the problem.

This year,  I talked to John's OT about moving an OT session into the pool.  Casa Colina (where John is in OT) advertises an 8 week swim program that is taught by an Occupational Therapist.  After speaking to her, I realized that this was the perfect fit for John.  The water provides a sensory experience for him and they can work on motor planning, as well as water safety and swim.

Watching him progress so rapidly in this class has been so awesome.  They work on strengthening his core, breath control, floating, swimming, motor planning, water games, swimming to bottom of pool, jumping in and swimming to the edge, etc.   Having an OT teach John these skills was exactly what we needed to see improvement.  He's on his second, 8-week session.  He is holding his breath, swimming to the bottom and getting rings, swimming the length of the pool, and floating on his back.  He used to avoid tipping his head back, but she got him to relax and float.  She taught him that when he is swimming or feeling like he is sinking, he can roll to his back and float.  She has worked with him, going from front to back and then back to swimming.  He has some motor planning work to do on this skill, but it's a long way from sitting on the edge singing songs and being splashed in the legs!  They work a lot on strength, endurance, muscle control, motor planning, etc., while playing games and swimming.  It's a great fit and I'm so thankful for the programs we have found for John. 

SIPT & John's Results

Last month, John went through a series of 17 tests that are incorporated into the SIPT. (Sensory Integration).   The tests themselves and the results were fascinating.  One of his new Occupational Therapists recognized that he could benefit from the test and administered it to him over a four week period.  She felt that his current program was trying to correct certain behavior and teach certain skills, but wasn't looking at "why" he had certain deficits and "why" he wasn't excelling in certain areas.  As he develops and we get more in depth into the "why" behind his behavior, the diagnosis seems to be moving away from autism, however sensory integration and autism are highly connected, so caution needs to be taken before making this kind of judgment.  Over the last year, his social awareness and behavior has blossomed.  Many of his deficits are now in motor planning, with praxis problems and a delay in behavioral/emotional.   The SIPT gave us very interesting results and a very good plan of how to correct what we are seeing.

Since the purpose of the blog is to journal, as well as educate and explain, I am going to go into depth on the test, as well as the specific results for John and what it means for kids with these issues.


(the following information was taken from information put together by Casa Colina taken from A. Jean Ayres, Ph.D)

SIPT, Sensory Integration, and Praxis Defined
SIPT stands for Sensory Integration and Praxis Tests.  They help us understand why some children have difficulty learning or behaving the way we expect them to.  They are not measuring intelligence, language, academic achievement, or social behavior.  But, the test assess sensory processing that relates to those functions and the ability of the child to perform in those arenas.  The test also evaluates praxis, or the ability to cope with the tangible, physical, 2 and 3-D world.

I've blogged about Sensory Integration before, but to re-define it here, it is the neurological process by which sensations (through skin, eyes, joints, gravity, and movement) are organized for use.  Our brain is working in the background to filter, discriminate, and modulate all the sensory information it receives.

Praxis is the ability by which we figure out how to use our hands and body in skilled tasks. (like playing with toys, using a fork, building a structure, cleaning a room, working a job)  This includes knowing WHAT to do, as well as HOW to do it.

Children with a dysfunction in Sensory Integration and Praxis have difficulties with visual perception tasks and are inefficient with their interpretation of the sensations they receive from their body.  In basic terms, these children have difficulty in organizing their body and their behavior.

SIPT in depth
There are 17 SIPT tests.  Those tests fall into 4 Categories
1. Motor-Free Visual Perception

• ability to visually perceive and discriminate form and space without motor coordination
• child shown puzzle pieces and a form board; has to look at pieces and visually perceive which piece would fit without placing it or trying it in formboard
• when child makes decision, picks it up; examiner notes which hand was used, whether they crossed the midline
• continues to more advanced, where pictures are hidden among other pictures and child has to perceive a figure against a confusing background

2. Somatosensory

•  assesses tactile, muscle, and joint perception  ("Soma" means "body")
• Child is encouraged to "feel", not "see"
• child must identify what shapes they are holding in their hand without looking
• Using cardboard, child's hands are placed underneath; examiner touches child on one of his/her fingers. Child must tell examiner which finger was touched
• being touched can make child uncomfortable, so examiner is looking for "tactile defensiveness"
• The conscious sense of joint position and movement is evaluated by the child's attempt to put his or her finger at the same place the therapist put it
• the therapist will draw simple designs on back of child's hand and child must attempt to copy
• the therapist will lightly touch the child's arm with a black pen, leaving a dot (while child's arm is under cardboard). Child must try to touch the dot without looking (assessing whether the child felt the pen touching their skin and the accuracy of the sensation)

3. Praxis

•  assesses ability of child to interpret verbal instructions to assume certain positions with the body "put hands on top of head"
• evaluates the ability to copy simple designs
• evaluates ability to build with blocks (therapist models a structure they built and child must copy) ;  evaulates visual form and space perception
• child imitates unusual body postures that are done by the therapist
• the child imitates movements and positions of the tongue, lips, and jaw ( oral praxis, oral motor)---a child with a deficit here would have eating and speech issues
• child imitates a series of simple arm and hand positions

4. Sensorimotor

• evaluates the ability to coordinate the two sides of the body
• assesses the degree of sensory integration of the proprioceptive sense (muscle and joint) and vestibular Sense (gravity and head movement)
• Eye hand coordination is measured; how well a child draws a line on top of a printed line -- executing this takes eye muscle control, practive ability, visual perception, and motor coordination
• measures the duration of the reflexive back and forth eye movements following the rotation of the body; it is a way to tell how well the nervous system integrates with the sensations from the vestibular system

Motor Planning, Dysfunction, and the Nervous System
When we need to do something with our bodies (play with a toy, write a note, type on the computer, walk across a room, do a jumping jack, lay down, sit on a chair, etc.), we need to:
1. have the idea of what to do
2.know how to execute it
3. physically execute what we want to do

In executing movement of our bodies, it involves fluidity and  muscle control, as well as the actual execution of the movement.  Children with sensory integration dysfunction cannot execute the movement accurately due to the inability of the brain to interpret and communicate the sensory information to the rest of the body.  The nervous system is not receiving the appropriate "feedback" it needs to remain in a "calm" state and therefore, these children's nervous systems are always on "high alert" and in defense mode. 

John's Results
The tests revealed that John has Dyspraxia and a Modulation Disorder;
specifically Visuo-and-Somotodyspraxia


Children in this group have low scores in Design Copying, Finger Identification, Graphesthesia(copying design therapist drew on hand), Postual Praxis, Sequencing Praxis, Bilateral Motor Coordination, Standing and Walking Balance, Motor Accuracy, and Kinesthesia (joint position and movement)

Understanding Modulation Disorder
A child out of the "normal", also known as "out of sync" can either fall into under responsive or over responsive to the sensory information.

Our brains are discriminating every sensation and then sending the message to our bodies to react to the sensation.  A normal modulation leads to appropriate "feedback" for the nervous system, resulting in a calming, positive experience.

When our brains do not discriminate that information correctly, there is a modulation problem, leading to the under and over-responsive behaviors.

A child who is over-responsive to touch, for example, would over-react to stepping into sand.  They won't be able to tolerate that touch and their behavior will reflect that, keeping the nervous system from ever receiving appropriate "feedback" to calm and enjoy it.

A child who is under-responsive takes longer to discriminate that sensation, therefore resulting in the need for "more" of the sensation, craving an abnormal amount of that sensation before the nervous system can become calm.  In sand, that child may need to bury their bodies in it, roll around in it, squish in their hands, etc.

For John, he is under-responsive in tactile, vestibular, and proprioception.  He may not know what he is feeling as he touches something if he is not looking at it.  He craves lots of movement, swinging really high, thrill rides, bounces up and down, crashes into things like couches and furniture to get "feedback" for his nervous system, etc. Because of this, if he doesn't get "enough" feedback, then his behavior,  his attention span, and his ability to sit and learn become effected.

He also seems to modulate sound and smell in the opposite direction, being over-responsive to those senses.  If something smells bad, he no longer can concentrate, starts acting "crazy" and "loopy" and is no longer "in control" of his behavior.  Loud sounds scare him, and can lead to anxiety over the anticipation of things like fireworks, blenders, hair dryers, etc.

What can be done to correct the modulation disorder, dyspraxia, and Sensory Processing Dysfunction?

The good news: LOTS OF THINGS can be done!!!

The key to John's success in overcoming the modulation, dyspraxia, and sensory processing issues will be to INTENSIFY every sensory experience he has to make sure his nervous system receives the "feedback" it needs from those experiences, so it can learn to be in a calm state.  Our brains can learn to regulate themselves.  Many of the things we have been doing over the last year incorporated many of these things, which would explain the significant gains he has made.  Here are examples of things we can do in the home, as well as in therapy, to help John receive the appropriate level of sensory "feedback" to help regulate him to a "calm" state, for lack of better terms.  ;)

Heavy in Proprioception; Intensifying every sensory experience

• Fingerpainting with sand in the fingerpaint
• Swimming
• Deep Pressure hugs, squeezes, massages
• Heavy "work" (push, carry, move)
• Use ankle weights (3 lbs. each ankle)
• Large trampoline
• Swing Set with tire swing, rock climbing wall, slides, swings, etc
• Shaving Cream in bathtub to fingerpaint with
• Barefoot outside
• Sandbox in backyard
• Bury toys in sand
• Hide toys in play dough
• "touch game" - find hidden objects where vision is blocked so only using hands to find the object

To help with Oral Praxia issues (EATING ISSUES)

• start meals off with something more resistant / harder to chew like bagel, beef jerky, starburst, granola bar
• Extreme temp foods (not burning, but very hot or very cold)
• Use of straw in cups
• Use of twisty loop straw
• thick smoothie, shakes
• more sweet
• more tang
• INTENSIFY eating experience

Study linking vaccines to autism a Fraud

http://www.cnn.com/2011/HEALTH/01/05/autism.vaccines/index.html?hpt=T1&iref=BN1