The Baseball Game

So John is afraid of fire drills. He found out there was going to be one at school yesterday and we had a meltdown before school. How did I get him out of his funk? I went to his world...

Well, John, life is a baseball game. When it's your turn to bat, you can't just hide in the dugout because you're afraid of the pitcher. The pitcher might be a bully at school, a hard test, a scary ride at Disneyland, or a fire drill. Even if the pitcher seems scary, you have to step up to the plate. Sometimes you might strike out, but sometimes you hit a home run. The umpire is there to make sure the rules of the game are followed. Can you imagine if the umpire wasn't there? Well, I'm the ump, John. I might make bad calls sometimes, but that doesn't matter because whatever call the ump makes is the official call of the game. Sometimes those calls are going to be quiet and sometimes those calls are going to be loud. Sometimes, I'll tell you to just go take your base.

Your coach is Jesus -- he can't play the game for you, but he's there helping you along the way. (like the first and third base coach, mom?) Yes, John. Your team is your family and your friends and they are in the dugout, cheering you on as you step up to the plate. They'll be there to tell you it's ok if you strike out and to celebrate with you when you make a great play. But, you have to take your turn at bat... you can't sit out the game in the dugout. Everybody gets their turn at bat -- remember that. Remember that even though you might have two strikes against you, you still have another swing. When it's your turn in the dugout and someone else is up to bat, encourage them to do well. Now, go to school and hit a home run for me ok?

J: Mom, baseball is my happiest memories. Thanks I'm calm now.

After school, "Mom, I hit a home run today. I'm no longer scared of fire drills. I just needed one more experience to make the play. And, I moved up to yellow (behavior scale at school) It's been a great day".

I love that kid.

Pinterest Board: Autism Strategies

Here is a link to a Pinterest Board on Autism Strategies.  Great ideas here.

http://pinterest.com/mrsdeming/autism-strategies/

Classroom

Found this blog through Pinterest.  Wanted to share.  It's a teacher's design for her classroom to help one child with ASD, but made the changes to benefit everyone in the class.

http://newadventuresinfirstgrade.blogspot.ch/2011/09/where-it-happens-wednesday.html

Navigation

When you have a child who has behaviors that are labeled with adjectives such as "at risk", "high functioning", and "main streamed", sometimes it's hard to navigate in the vast world of the Autistic Spectrum.  Sometimes it feels like you don't quite fit in because there are so many kids that have more serious issues than your child has, they qualify for more services and seem more "in need" than your child is, and it can lead to feeling guilty or worse, may lead to your abandoning acceptance of your child's needs. 

There is a distinguishable difference between using the label of Autism as an excuse for your child's behavior and acceptance of the label to understand how your child learns to guide him through the growing process.  I've never been comfortable with the phrase "He does that because he's Autistic".  I don't like what that implies.  Our attitudes affect our behavior and choices and when we approach the Autistic diagnosis in this manner, we are missing a huge piece of the Autism puzzle.  A child with Autism is not mentally retarded.  A child with Autism is often not learning important development in ways that "normal" children do.  By understanding your own child's unique way of learning, you can teach your child certain developmental milestones that he may have missed.  Progress is possible, but if the attitude you approach your child with is "oh, he's just that way" then you are missing an opportunity to help him grow. 

Autistic behaviors, like chewing or meltdowns, are difficult to overcome....almost impossible at times.  But a child, any child for that matter, needs to be given the tools to cope and work through it.   An autistic child often has a "disorganized" brain.  You need to approach your child and navigate through his individual disorganization.  What is he/she able to organize?  What areas "speak" to your child?  Use those areas of strength to guide your child through the areas where he struggles. 

 For my son, when he was 3, he was glued to the GPS when we were driving.  He needed to know where we were going, where we were, how we were getting somewhere, etc.  My son ended up learning to read that year because of that GPS.  It started with street signs and moved from there.   By the time he entered Kindergarten, he was reading at a 2nd grade level.  Now, at the time, the GPS drove me crazy and if I didn't use it, even for a trip to the bank, there would be meltdowns and frustration.  I slowly had to introduce the "secret spy way" into the mix so that he could cope with not always having the GPS on.  Sometimes mommy just had to take a secret spy way.  To this day, if I drive to a known location and go a different route, he'll say to me, "hey, you took a secret spy way'.  Regardless of your technique, you need to jump into their heads, play their games, and be in their world.  We try so hard to get them in our world by our own navigation that we often hit boulders in the road.   By going into their world and playing along, we can introduce our world to them.  But they aren't comfortable in it until we become comfortable in theirs.  Together you can do this.  Don't worry about the Autistic Spectrum or the exact adjectives used to describe your child's condition.  Navigate his/her pathway together and there will be individualized progress at every bend in the road.  The road keeps going and it's full of rocks, but as a mom and a dad, the only thing that matters is that kid that's entrusted to you. You can't move the rocks out of the way.  You have to bulldoze right through them.

Article worth the read.

Click here for an interesting article from Cal Tech on Autism. They think there might be a connection between a viral infection in the mother during pregnancy and autism. Still researching, but interesting theory. I like the tone of the article and the approach about defining what autism is.

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

Jaundice Link in newborns to autism

http://www.msnbc.msn.com/id/39580262/ns/health-kids_and_parenting/?GT1=43001

Siblings

Here is an article on a research study of the siblings of an autistic child: http://pagingdrgupta.blogs.cnn.com/2010/10/08/siblings-of-kids-with-autism-have-language-delays/?hpt=T2

You Know You're Teaching an SPD Kid when....

 This was an original blog post on "Hartley's Life With 3 Boys" and can be found here.
Hartley Steiner is a blogger with 3 boys, one whom is adopted and suffers from SPD, High Functioning Autism, Bi-Polar, and learning disabilities.  She is an advocate for kids with special needs. She has a very large blog following and lots of information and external links can be found on her site.

I am going to re-post her list here because I think it gives you an idea on how Sensory Processing Disorder may affect your child in a typical classroom environment.



You Know You're Teaching an SPD Kiddo When...(a list for teachers and all of us who watch our kids struggle in school)

1. He chews his pencil, both the eraser and the lead, all day long.

2. He can’t seem to stay seated for over 30 seconds.

3. He constantly wants to get a “drink” but really he is just playing in the sink.

4. During circle time he sits virtually on top of the kid next to him.

5. You have to remind him that he cannot touch the hair of the girl next to him—no matter how cool it looks.

6. You implement Handwriting Without Tears program the first day — because you can’t read anything he writes.

7. He wears the same pair of Soft sweatpants (made to look like jeans) every single day.

8. He is the only one in class standing at his desk.

9. He BLURTS out the answers to every question, and talks all through story time.

10. At recess he climbs on the very TIP TOP of the jungle gym, where he is NOT allow.

11. He spends more time under the table than sitting at it.

12. He lit up when he saw the ball pit in the resource room.

13. He refuses to eat in the cafeteria on “Sloppy Joe Day” because it smells awful.

14. The collar, the sleeves, and a strange place directly in the center of his shirt are all dripping with spit from being chewed on all day.

15. Everyone around him gets a HUGE bear hug, whether they like it or not.

16. He covers his ears when you raise your voice to get the children’s attention.

17. His mother came in with two 3 inch binders, labeled and color-coded, lectured you about the DSM-IV and gave you an ear-marked and highlighted copy of The Ultimate Guide to Sensory Processing Disorder. 

18. During art, he spent most of his time trying to glue his hands together instead of completing the project.

19. He is very proud of being the first kid in the entire school to do the monkey bars backwards.

20. He complains that the lights are too loud for him to concentrate, when you don’t hear a thing.

21. He simply cannot stop himself from using the “off limits” stapler on the teacher’s desk.

22. He knows by memory everything hanging on the classroom walls.

23. He asks you to 'push' him.

24. He can’t keep his hands to himself when standing in line; he is pushing or bumping the entire time but doesn't seem upset by it.

25. He spends his entire recess spinning in circles, but is never dizzy.

26. He is a little too enthusiastic about banging the drum during music class.

27. He takes pride in being the “door opener” or “lunch wagon puller”

28. He can repeat conversations you had with another teacher in the hallway

29. You find things in his desk that don’t belong there; teacher scissors, bingo markers, beads, crayons and other assorted small fun things

30. The bus ride to school seems to wind him UP UP UP— (and so does the bus ride home) no matter how tired you thought he was

Occupational Therapy -with an SI approach

John is attending OT (occupational therapy) two times a week right now at Casa Colina Rehabilitation Hospital.  The therapists working with him are working with a SI (Sensory Integration) approach.  To understand this a bit more, I thought I would define SPD (Sensory Processing Disorder), the treatment, and how it all affects behavior, emotions, social skills, and motor skills.


What is SPD?
First, to understand SPD, we need to look at what Sensory Processing (sometimes called Sensory Integration) is all about.  According to the Sensory Processing Foundation, sensory processing is our nervous systems way of receiving messages from the senses and turning them into appropriate motor and behavioral responses.  If you touch something that is too hot, your nervous system interprets that touch and you react accordingly, realizing it is too hot.  If you hear something that is too soft, you are able to react by turning the volume up because the nervous system interpreted the sense of hearing and sent the message that the volume was too low. 

SPD, or sensory processing disorder, is when the signals do not get interpreted correctly and therefore, responses are not organized appropriately.  The brain receives the sensory information incorrectly and inappropriate responses in behavior, emotions, motor planning, social skills, etc. 

Some people with SPD may over-react to one of their senses, while others under-react.  Some people are bothered by textures, tags on their clothing, certain foods, loud noises, bright lights, etc.  Some people with SPD have poor posture, low motor planning, low muscle tone, appear klutzy, etc.  Others crave sensations in what appears to be "overdrive", where they can't seem to get enough of a particular texture, swinging on a swing, spinning in circles, etc.

MANY PEOPLE THAT HAVE SPD GET MISDIAGNOSED FOR OTHER PROBLEMS BECAUSE THE BEHAVIORAL, EMOTIONAL, SOCIAL, MOTOR PLANNING, ETC. ARE AFFECTED AND CAN APPEAR AS SOMETHING DIFFERENT.

There have often been times throughout our journey where I have wondered if the "at risk" for autism diganosis or the PDD-NOS diagnosis for John was really just SPD.   Children on the Autistic Spectrum have Sensory Processing problems, so oftentimes, both SPD and an Autistic disorder are present.  I hit a point a long time ago where the actual label didn't matter to me anymore.  I know what John's current needs are and I'm addressing those as they come up.  About 3 months ago, it was obvious that he needed OT above all other help.

OT with an SI (sensory Integration) approach is when an occupational therapist works with the child in a "sensory rich" environment in an OT gym.  The therapist will guide the child through play activities that challenges the child in areas where he/she need improvement.   For John, they are currently working on fine motor skills (buttoning buttons, writing, hand games), motor planning (using yoga positions to challenge him to manipulate his body to match a photo and hold position without falling, using obstacle course where he crawls through tunnels, climbs over obstacles, hits a baseball, kicks a soccer ball, bounces on a trampoline, jumps in a ball pit, swings on a trapeze bar, etc), stengthening posture by having him use his upper body more (this week they had him lying on his stomach on a skateboard and had to use his hands, arms, and upper body to move the skateboard through the bases of baseball).

John has a problem with organization in his brain.  There are days where he becomes over-stimulated through  the day and can no longer organize his body, his responses, etc.  There are times you will see him slumped over in a chair---standing facing the chair, with his head in the chair--- constantly moving to get comfortable or he might appear "tired" where he wants to be carried and slumps over ones shoulder like a young infant.   He sometimes throws his head back and shakes his head so his eyes move back and forth.  These are all signs that his brain is "disorganized" and he can't appropriately focus or react to what is going on around him.    Occupational Therapy teaches him how to regulate himself when he gets that way, as well as helps him learn everyday activities through play therapy.

Open Doors - Your Child is Not Broken

Earlier this week some friends of ours took us to an Open Doors Presentation.  The topic was "What is Asperger's/High Functioning Autism".   The presenter was a local representative from SELPA and gave the attendees a wonderful, welcoming evening.   Many parents were there and shared where they were on their journey.  Some had just received a diagnosis, some were suspecting that their child may have Asperger's, and some had "almost adult" children with the diagnosis.


The reason people found themselves at the presentation was different for everyone.  Some were there because they had not found support in their families, communities, or even with their current medical circles.  Some were there to learn more about the diagnosis and ways to help their children.  Others were there to find companionship with others who were going through the same thing.  Even others were there because they wanted to guide and help other parents who were just beginning the journey.


While I found the presentation wonderful, I also enjoyed watching the other parents become enlightened through the meeting.  My husband and I have already hit the point where we realize that our son is going to be ok.   He just learns in a different way. There is nothing "wrong" with him and he's not "stupid" or "unteachable".  He just needs to be taught differently.   The acceptance and realization of this really sets you free as a parent of someone on the spectrum.  It is so important that as a parent you relax a bit and let your kid LIVE.  Sure, there are going to be some tough days.  Anyone who has been the parent of someone on the spectrum understands that BUT.... you have to realize how many wonderful days you have, what a blessing things kids are to your life.

For me, I hit this realization in February 2009 when I miscarried at 21 weeks.  I didn't naturally go into labor, but when the baby stopped moving, I knew I wasn't pregnant anymore.  I had to go into the hospital and be induced to deliver the baby.  It was the most pro-life experience I ever had.  Yes, it was tough. But, I learned how fragile life is, how big that baby was at only halfway through the pregnancy -- and yet so tiny---, and what a blessing each life is that we are entrusted with.   My journey with my son changed at that moment.   It was not the burden it had been the prior year.  The questions of "is he" or "isn't he" went away.  It didn't matter anymore what the label was.. he was my son and I was going to help him find his way.  He was MY blessing.

For me, Open Doors didn't represent a support group to realize that my son is going to be ok.  For me, this presentation made me realize what I needed to "gear up for battle" in the developmental struggles that will lie ahead.  We touched on kissing, dating, the "sex" talk, masturbation, whether to tell your child about their diagnosis, and learned to laugh together.  Being a parent of a child with special needs still involves parenting your child, but looking at it from a different perspective.  As a parent, you know your child best and you can find the best way to help your child survive in this world.  Your child is working really hard all the time and sometimes you need to remember that he/she is still a child.  There are bad days with "typical" kids too.  Our kids are put under a microscope and every behavior, word, utterance, and movement is studied and the diagnosis is to blame.  However, we as parents need to realize that these kids work HARD, are smart, and may need to learn a bit differently from others, but they also need to be allowed to just be a kid.

Where is Thumbkin?

According to The Lotus Tree Sensory Integration Center, 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 pencil or fork, or building a structure. 

Children with praxis problems have a hard time writing, eating with a utensil (often spilling frequently which leads to a preference to use their hands to eat), playing games like rock, paper, scissors or Where is Thumbkin, putting up fingers to show how old they are,  button a shirt, etc.

As a toddler, John would hold 2 fingers (with the opposite hand) when he wanted to show he was 2 years old.  He couldn't fold the other 3 fingers down, while still holding up the 2 to show his age.  He has ALWAYS used his hands while eating and frequently needs to be reminded to use a fork.  He has very little control of it and is considered a "messy eater".    He had problems building towers out of square blocks and during early intervention, they worked with him stacking first 4 blocks, then 5... and then up to 9.    We put a variety of sponges in the bathtub for him to squeeze and release to help him with the muscles in his hand.  The releasing is important because that is the same muscle used to let go of a block with control when it sits on top of another.   In OT, he has been working on buttoning.

More recently, we noticed he couldn't play hand games.  Last week in Kids Crew, the lesson centered around finding "fair" ways to determine who goes first when playing games.  They learned about picking a number from 1-10, eenie-meenie-minee-moe, bubble gum bubble gum, and rock, paper, scissors.  John was unable to make the "scissors" with his two fingers.

Concurrently, he was learning "Where is Thumbkin" at his My Gym Preschool.  He needed to isolate the thumb, the pinkie, and the pointer finger at different points in the song.  At the end, the teacher showed them that if you put all 3 up together, it means "I Love You".  John struggled that day, and the next day had the problems with Rock, Paper, Scissors in Kids Crew.

All week, John has been practicing holding up each finger, singing the Thumbkin song, and attempting to play Rock, Paper, Scissors.  .... AND THERE HAS BEEN SUCCESS!!!   He's got it figured out.  He's able to do it all now and the hang loose sign (like the sticker on the back of Daddy's truck).  I'm so proud of him.  He had to work through some frustration to get there, but he did it all on his own.  Although we've been working on different aspects of praxis since we started early intervention, we concentrated more on achieving the goals that were set for him, like eating with a fork, building the blocks, etc.  He figured out his own goal this week and conquered it before he had to go back to Kids Crew.  This morning he told me, "Mom, I'm going to show my friends in kids crew that I can do it!"  He's proud too! ;)

John Update

It's been so long since I updated the blog, so I thought I would write about what John has been up to.  First of all, John will be turning 5 in November and we have kept him in preschool this year.  He is attending two schools.  La Verne Parent Participation is a co-op preschool that he attended last year and is continuing for 2 days a week this year.  He stays for an additional 2 hours in the afternoon for a pre-K program.  On the other days, John is attending the "Little Learners" program located in the local My Gym facilities.  He goes for 3 hours and it's a great setting for him because the equipment in the room gives him a little bit of self-directed OT (complete with ball pit, trapeze bars, balance beam, monkey bars, slides, bridges, tunnels, trampoline, etc.)

Last September, John visited with Autistic Specialist, Dr. Bauman, at Casa Colina and she recommended a few things for us since John wasn't qualifying for services.  To address the problem of separating from me, potty training issues, and behavioral issues in the home, we hired a therapist to come in the home.  For most of the year, she came weekly and helped John work on conversation skills, feelings, changes in feelings, writing his name, a few exercises for body awareness, and set up monthly and yearly goals for him.

After months of working together, we realized together that what John needed more than anything else was OT.  He was excelling when it came to one-on-one activities and has been reading for a year.  Sensory problems and lack of body awareness seemed to be the reason for most of the problems we were encountering (which we had known for years, but finally were able to get the appropriate program for him).  We had an OT evaluation, which resulted in a recommendation of 2 times a week.  While we waited on the waiting list for therapy, our in-home therapist worked with the OT to come up with activities we could do in the home to help John.

Once we started OT, we changed his in-home to just once a month.  It's great to continue having someone help with goal setting, charting progress, and recommending new programs.  There are a couple of huge things that helped John make leaps and bounds and I'll detail them below.

BASEBALL
John discovered Major League Baseball this year.  After going to a minor league Quakes game, he was hooked.  He follows the stats, the scoreboard, the game, the players, etc.  He quickly became an Angel fan and a rowdy Dodger fan.  What is so significant about this is that prior to baseball, John would not play ball (any kind of ball), wouldn't play catch, couldn't catch a ball, etc. Since baseball, something clicked in John's head, and he started surpassing his monthly/yearly goals.   He is obsessed with dates, scores, and stats.  Every morning, he is up before anyone else and he is on the computer checking MLB.com and checking the scores.  He gives us the update on who won, what inning the home runs were scored in, and what player hit them.   To him, Dodgers are the "right team" and everyone else is the "wrong team".    He has attended about 15-20 major league games so far this season and last night went to batting practice at the Dodger game and came home with an official MLB baseball that a Giants fan gave him.  He turned to my husband and said, "Daddy, some Giants fans are nice!"  Yes, John, there are some. ;)    (to quote my husband's Facebook status today). 

CASA COLINA KIDS CREW
Casa Colina has this amazing program to teach social skills.  It's an 8-week class that John is about 5 weeks into.  John has learned and applied each lesson he has learned at this class and it's such a delight to watch.  The first week was about greetings and salutations.  The second week concentrated on body awareness while talking to others.  They discussed body position (direction facing while talking), eye contact, etc.  The third week they talked about personal space and used the concept of being a "space invader" when they got too close to someone else.  John took this lesson to heart and spent the next week self-regulating himself.  He didn't like the idea of being a space invader.  He'd put his feet on me an then ask, "is this a space invader"?    Every lesson concentrates on social awareness and skills that are used during everyday communication.    It has proven to be so useful for John and is something I'm so glad was recommended to us.  We have 3 weeks left of the program. 

NOW THAT SCHOOL IS BACK IN
From the first day of school, I realized how much we've progressed over this last year.  John is a different kid this year at school.  He is social with the other kids, stays with the group, able to hold focus and attention, and learning to write his numbers. (since he has had very low fine motor skills, controlling a pencil is difficult.)   I can't wait to see where this next year takes him developmentally.  This journey we've been on has been very tough at times, but it has also been one of the most rewarding things our family has been through too.   This next year is going to be a big year for John.  We've come so far and I'm so proud of my little guy.  

April is Autism Awareness Month

http://www.lightitupblue.org/



APRIL 2 is Autism Awareness Day.

Teaching with Music

I came across this article online that I thought deserved a blog post.  The article was found on a UK news website called The Independent in the Science section.

According to the article, learning an instrument enhances the brain's sensitivity to all sounds, including speech, say researchers.  Interpreting the nuances of speech are conveyed in the subtle changes in the human voice.  By learning musicality, one can learn to develop skills that help children process speech.

I started researching about learning through music and found a ton of resources that put music at the center of a child's education.  The Learning Through Music Consultant Group in Minnesota believes that music broadens and deepens understanding of literacy, numeracy, and higher order thinking skill.

Suzanne L Burton, PhD from the University of Delaware wrote an article on building learning centers that are music based.  She says, "A music-based learning center may be created to strengthen and build connections with content areas such as dramatic play, art, science, social studies, and language arts as well as encouraging musical expression and experimentation".  In her article, she outlines how to build music-based learning centers, complete with an outline that goes through goals, activities, and materials you can use in the centers.

The Autism Research Institute has an article on their website that says music can help children succeed in the areas that autism impairs---communication and interaction.

According to musictherapy.org, Music Therapy is the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional.

For children on the autistic spectrum, music gives them a chance to focus.  Oftentimes, a child with autism is overstimulated by sound in the environment that they are unable to focus on what is being said so they become distracted.  Music has a way of holding a child's focus, keeping them from getting distracted.

Songsforteaching.com is a website that lists songs in many different categories to help children learn.  They have a section of songs specific to teaching goals that many autistic children share.

A great article on music therapy, it's benefits and how it applies to children on the autistic spectrum is found here: http://autism.lovetoknow.com/Music_Therapy_for_Autism