New Blog Location

I am going to be adding new features and changing the physical look a bit for my blog, so I am moving the location of the blog to be able to make the changes, including an easier blog address.  It can be found at http://beingproactive.blogspot.com/.  Please sign up as a follower on this new site to receive updates.

THANKS!

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

Literal thinking

There are a lot of examples where my son has taken things very literally.  Just today, he went to lay down for a nap at 2:17.  He told me he was going to get up at 2:27.  Well, he fell asleep and woke up at 3:25.  He was screaming for me and when I went into the room, he was in tears about how it passed 2:27.  I tried to talk him through it, calm him down, etc.  He stopped crying, but wouldn't get out of bed.  He started crying again and I couldn't get him to calm down until I changed the clock to read 2:27.  He watched me change it and that didn't bother him.  But, he couldn't get out of bed until it said 2:27 on the clock.

Autism and Literal Thinking
Autism children, especially Asperger's take metaphorical things literally.  They don't understand things that are meant to be jokes (like go break a leg) even when explained to them.  They can't comprehend a "figure of speech" and how it relates to a situation. 

Abstract thinking is often taken for granted. There are many abstract concepts such as time, relationships, multiple representations, non-verbal communication, inferences, social interactions, and idioms.  An average person is able to understand many of these with no problem or a simple explanation, but those with Autism, Asperger's or PDD may have a difficult time understanding it, if they ever understand it at all.  If someone is going to be taught about abstract thinking, a verbal explanation is often not enough.  Physical representations or reptition is often used to help those literal thinkers how to comprehend something that is abstract.    For my son, John, time to him was what the clock said---not the actual time it was.  He was satisfied once the clock read what he wanted it to.  Often times, the passage of time has to be shown in a visual representation for it to be taught to a literal thinker.  By using a calendar to show when something is happening, they are able to understand that they must wait.

Why Occupational Therapy Works for Kids on the Spectrum

Occupational Therapy is one of the treatments for kids on the Autism Spectrum.  The main reason for occupational therapy is that children can work on fine and gross motor skills, as well as overcome some of their sensory processing difficulties.

A developmental delay in gross motor skills might mean the child can't ride a bike, may run in an awkward manner, or may have difficulty kicking a ball.  Therapists use organized play to work on these gross motor skills.  If a child has severe delay with gross motor skills, then physical therapy would work better.

A developmental delay in fine motor skills might mean the child has trouble feeding themselves, getting dressed, or writing.

Occupational Therapy can help with self care issues and academic skills.  They may work on writing, cutting with scissors, as well as developing the muscles required for those skills by playing with play dough, stringing beads, and squeezing sponges. 

The goal of Sensory Integration Occupational Therapy is not to teach behaviors or skills, but to help with neurological processing deficits, teaching them to adapt to the environment around them. This could include teaching tolerance to different textures, loud noises, and bright lights.  It involves determining what kind of sensory issues a child has and helping him/her get the sensory input they seek in a controlled environment.

With Sensory Integration, the therapist will be helping the child manage his/her body in space.  An OT can also help the child with communication and interaction with others through therapy known as Floortime, where the therapist gets down on the floor and Plays with the child.  The therapist works on transitions from one activity to another if transitioning is an issue with the child. Determining strategies that work can help outside of the therapy session when the child is at home, at school, and in the community.

Childhood Apraxia of Speech

Apraxia is a neurological disorder that results from poor motor planning.  Physical therapy, occupational therapy, or speech therapy can help kids with Apraxia.  Developmental Apraxia of speech interferes with the child's ability to produce different sounds needed for intelligible communication. 
 The child may know what he/she wants to say, but the area of the brain cannot "motor plan" appropriately to make the muscles of the jaw and mouth move appropriately to make the sounds.    Even when trying to correct them, the child cannot figure out how to make the correct syllables and sounds.  Some signs of apraxia include children who have very limited sounds they can make, intelligible speech that doesn't "clear up" with time, inconsistent speech errors, frustration with speech correction attempts, ability to say short words but can't string a series of words together, drops ending off of words, can imitate sounds better than plan them on their own, etc.

The information below is taken directly from www.aprakia-kids.org.

What is Childhood Apraxia of Speech?

Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia. No matter what name is used, the most important concept is the root word "praxis." Praxis means planned movement. To some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder.
The act of speech begins with an intention to communicate.  Next, an idea forms, outlining what the speaker wants to say.  The words for the desired message are put in the correct order, using the correct grammar.  Each of the words are comprised of a specific sequence of sounds (also called phonemes)and syllables that must be ordered together.  All of this information is translated from an idea and information about order of sounds into a series of highly coordinated motor movements of the lips, tongue, jaw, and soft palate. 
The brain must tell the muscles of these “articulators” the exact order and timing of movements so that the words in the message are properly articulated. Finally, the muscles must work properly with enough strength and muscle tone to perform the movements needed for speech.
In typically developing speech, children make word attempts and get feedback from others and from their own internal systems regarding how “well” the words they produced matched the ones that they wanted to produce.  Children use this information the next time they attempt the words and essentially are able to “learn from experience.”  Usually once syllables and words are spoken repeatedly, the speech motor act becomes automatic.  Speech motor plans and programs are stored in the brain and can be accessed effortlessly when they are needed.  Children with apraxia of speech have difficulty in this aspect of speech.  It is believed that children with CAS may not be able to form or access speech motor plans and programs or that these plans and programs are faulty for some reason.

How Is CAS Different Than A Speech Delay?

A true developmental delay of speech is when the child is following the "typical" path of childhood speech  development, although at a rate slower than normal. Usually this rate is in pace  with the child’s cognitive skills. In typical speech/language development, the child's receptive and expressive skills increase together to a large extent. What is often seen in a child with apraxia of speech is a wide gap between their receptive language abilities and expressive abilities. In other words, the child's ability to understand language (receptive ability) is broadly within normal limits, but his or her expressive speech is seriously deficient, absent, or severely unclear. This is an important factor and one indicator that the child may be experiencing more than "delayed" speech.  In the case of such a mismatch in skills, the child should be evaluated for the presence of a specific speech disorder such as apraxia. However, certain language disorders may also cause a similar pattern in a child. A gap between a child's expressive and receptive language ability is insufficient to diagnose apraxia.

HBO Movie Link

Here is a link to the official movie trailer and movie info on the Autism Movie that HBO Produced.


http://www.hbo.com/movies/temple-grandin#/movies/temple-grandin/index.html

HBO Special on Autism - Great Website

Taken from : http://www.templegrandin.com/

Temple Grandin, Ph.D., is the most accomplished and well-known adult with autism in the world. Now her fascinating life, with all its challenges and successes is being brought to the screen. HBO has produced the full-length film Temple Grandin, which premieres on Saturday, February 6th on HBO. She has been featured on NPR (National Public Radio), major television programs, such as the BBC special "The Woman Who Thinks Like a Cow", ABC's Primetime Live, The Today Show, Larry King Live, 48 Hours and 20/20, and has been written about in many national publications, such as Time magazine, People magazine, Forbes, U.S. News and World Report, and New York Times. Among numerous other recognitions by media, Bravo Cable did a half-hour show on her life, and she was featured in the best-selling book, Anthropologist from Mars.
Dr. Grandin didn't talk until she was three and a half years old, communicating her frustration instead by screaming, peeping, and humming. In 1950, she was diagnosed with autism and her parents were told she should be institutionalized. She tells her story of "groping her way from the far side of darkness" in her book Emergence: Labeled Autistic, a book which stunned the world because, until its publication, most professionals and parents assumed that an autism diagnosis was virtually a death sentence to achievement or productivity in life.
Dr. Grandin has become a prominent author and speaker on the subject of autism because "I have read enough to know that there are still many parents, and yes, professionals too, who believe that 'once autistic, always autistic.' This dictum has meant sad and sorry lives for many children diagnosed, as I was in early life, as autistic. To these people, it is incomprehensible that the characteristics of autism can be modified and controlled. However, I feel strongly that I am living proof that they can" (from Emergence: Labeled Autistic).
Even though she was considered "weird" in her young school years, she eventually found a mentor, who recognized her interests and abilities. Dr. Grandin later developed her talents into a successful career as a livestock-handling equipment designer, one of very few in the world. She has now designed the facilities in which half the cattle are handled in the United States, consulting for firms such as Burger King, McDonald's, Swift, and others.
Dr. Grandin presently works as a Professor of Animal Science at Colorado State University. She also speaks around the world on both autism and cattle handling. At every Future Horizons conference on autism, the audience rates her presentation as 10+.
Dr. Grandin's current bestselling book on autism is The Way I See It: A Personal Look at Autism and Asperger's. She also authored Unwritten Rules of Social Relationships, Animals Make us Human, Animals in Translation, Thinking in Pictures, Emergence: Labeled Autistic and produced several DVDs. All books and DVD's available through Future Horizons.
Temple Grandin's work continues to inspire millions, drawing superlative reviews such as these:
"Temple is my hero. She has my vote for the person who has provided the greatest advance in our understanding of autism this century."

-Dr. Tony Attwood, world renowned expert on autism spectrum disorders

Autistic Artists

I've been bad with keeping up with the blog lately.

A friend sent me this website and it really touched me.  It says a lot about Autism Spectrum Disorders without any words.  The imagery is beautiful.

Take a look:   Autistic Artists

I'll try to update more often.

Fever

John started running a fever yesterday. Today, when he woke up from his nap, he was "barking" in chest. I took him to the doctor and he is beginning to get croup. No wonder our week has been so bad. Most children's behavior is worse when they are sick. Autistic spectrum kids are no different. Many of the "stereotypical" behavioral patterns are worse when they are coming down with a cold, fever, or sickness of some sort. Our week has been terrible after such a good first two weeks of school. I feel bad for the little guy. Daddy comes home from his business trip on Saturday. Can life please return to "normal"!!!??? Thank you.

weighted blankets

I am researching weighted blankets and came across these sites. I am not endorsing them over any other site, but providing you links for you to easily access, read, and decide for yourself.

Weighted blankets are thought to calm, relax, and aid in sleeping for kids with Sensory Processing Disorder, who are anxious, have trouble sleeping, or crave deep pressure. They come as small as lap blankets to help a child sit still when seated at a table or desk, doing homework, busy work, computer time, listening to someone lecture/read/talk, or eat. They also have toddler size, twin, full, and queen sizes for sleeping. They come in different fabrics and with different amount of weight. Most OTs agree that the weight of the blanket should not be more than 10% of a child's body weight.

http://www.weightedblanket.net/index.htm Monthly Giveaway of a blanket
https://www.cozycalm.com/ Owned and Designed by a woman with Asperger's
http://www.quietquilt.com/ Owned and Designed by parents with a son on the Autistic spectrum
http://www.affordableweightedblankets.com/ Owned by grandparents of a boy with Autism who is non-verbal

Rough Days

Today John ran a fever. This could explain some of his erratic behavior over the last couple of days. I've noticed that when anything out of the ordinary makes John not feel well, the stereotypical behavior is brought to the forefront. With my husband out of town on business and John coming down with something, we have had a rough day every day since Monday.

Today, John was triggered when my mom wasn't staying for dinner. He wanted her to eat with us, but she was heading to her home to eat. He purposely spilled his orange juice, which then set him off, bolting to another room, spinning in circles, crying and disrupting "order" by taking balls out of the ball pit and throwing them. He was put in a time out, but wouldn't stand against the wall and ran to the freezer, opening and closing the door. A second attempt sent him bolting to the ball pit, throwing his whole body clumsily into the edge and over the top, laying very still saying "mommy don't take me out. no time out." I told him he had a few minutes to calm down and then he needed to finish the time out. It took coaxing and a stronger will than his and I managed to get through the time out. As soon as the timer beeped, the smile appeared on his face and he came to me for the hug. The beep of the timer not only ends the time out, but is ending the behavior. I need to use that.

Documenting - September 2009

It's been awhile since I've written, and one reason that brought me back was the documentation journal that this blog provided me. The other is the outlet to get it all off my chest.

The summer overall was rough as we began seeing behavioral problems surface in John that we hadn't had before. We have analyzed each week with our own interpretations, biases, and "Best Guesses". Some of the reasonings we used were the lack of schedule and routine, too much high fructose corn syrup in his diet, a delayed developmental phase of terrible twos that appeared inappropriate for our almost 4-year old son, John discovering and learning where the discipline line was, etc.

Some of the things we have begun to see are:

• bolting to a different room in the house when something is upsetting, and "destroying" organization in that room, whether that be dumping books, blocks, or toys on the floor, ripping up paper, spilling a glass of juice on purpose, pushing the ice maker dispenser button so ice hits the floor, or banging a toy on a glass window.
• out of control emotional responses to his feelings
• inability to re-gain composure with an intense emotional meltdown that includes hurting himself during discipline (bumping head on wall, slamming hands on different surfaces)
• anger management issues
• Emotional responses leading to above behavior when someone tells him he can't do something
• whimpering and withdrawing when triggered
  
• preference to go to sleep when upset (another withdrawing sign)
• Disinterest in potty training anymore, regressing to almost infancy again
• Pushing mattress off bed and sleeping on box springs, preferring the weight of the mattress on legs and back at times (sensory pressure)
• Fleeing in opposite direction in public when he was upset and didn't want to be where we were, with no regard for safety
  

In response to this, we visited the autistic specialist again, looking for advice for schooling (since we've been denied services through the school district), advice for the behavior at home, and advice about his clumsiness/ankle issues. (John kept twisting his ankle all summer; x-rays show nothing, but his ankles and feet physically look like they are growing improperly).

The doctor suggested a few things - speech therapy, occupational therapy to deal with sensory issues, an in home educator who can help with behavior issues, separation issues from me (since he was having a hard time at the end of the school year with fleeing to the parking lot looking for me, or wandering to Katie's classroom to find her), and a one-on-one aide in the classroom. We are also set to see an Orthopedist at the end of September for his ankles because she does agree that his ankles seem to be too floppy, no muscle tone, and are growing wrong.

Well, that all sounds fine, but when you are denied service, all of the cost for that therapy comes out of pocket. Occupational therapy is recommended 2 times a week at one hour each. I have been quoted up to $190/hour for this service. (that would be almost $400 a week for OT alone) We opted for an in-home teacher at $65/hour to get started.

We enrolled John at two preschools. On Monday and Friday, he goes to the school he went to last year, but we put him in with his own age. Last year, we put him in with the kids who were learning to talk since speech was so new, but he was with kids 1-1.5 years younger than him. So, this year, he is still the oldest in his class, but he's with the kids that turn 4 this school year. He's also at La Verne Parent Participation Preschool (LVPPP) on Tuesday and Thursday.

The first 2 weeks of school were awesome! He was soooo good! Anxiety caused him to chew on his shirt during class, but he had NO OTHER ISSUES at all!!! He has even got to a point where he is close to being potty trained again. It was even reported to me that he consoled a girl who was crying because she got hurt and he told her he'd hold her hand until she felt better. (He actually noticed someone else upset, recognized it, made the effort to socialize, and accurately followed through - way to go John!) Last Friday, Bonita Unified School District special education came and observed him because I appealed the IEP (Individualized Education Plan) last June. He did well that day.

Last Thursday, my husband left for a business trip in China and John came down with a cold. We've been trying to video conference through Skype so the kids can see Bill. John really likes it. The last two days have been draining. When we arrived at preschool, John began riding the bike around the playground the wrong way. He was corrected and told to go the right way. He got off his bike and began walking backwards around the playground, making his way to the bathroom. I was talking to his teacher and I saw this. I followed him, afraid he was looking to run down the hall. Instead, he said he had to go poopy. So, I stepped back to let him go. He started flushing the toilets over and over. I went over to him and asked him what was wrong. He wouldn't look at me and didn't say much. He said he wanted to wash his hands "all by himself" and then go home, so I told him I would sit on the bench and wait for him to wash his hands. then I would let him play on the playground and I would not leave him. I sat on the bench right outside the bathroom door as he watched me. He then turned to the sink and began angrily pushing the soap dispenser making a huge soapy mess in the bathroom. I ran back in and began cleaning it asking him what was wrong and he took off running down the hall. I finally found him in a classroom just standing near a shelf. He told me "I'm having a hard time. School is too crowded". I told him we'd go home.

At home, I set up an obstacle course in the living room, creating a surface to run through out of a memory foam mattress (which we called the mud), had him climb over the ottoman (the mountain), jump into the 4 hula loops laying on the ground, crawl on the box springs of the couch, slide down a cushion, push two exercise balls across the room, and bounce 10 times on another bouncy ball. He did this about 4 or 5 times, each time getting more and more tired. I made him finish the last one, which was a struggle (he went to his room wanting a nap), but he was very excited when he finished his last "Lap", asking for high tens, saying "I DID IT".

Today, he had LVPPP. He was excited to go because it was his share day. Each kid gets one day where they get to take the share bag home and are given a special color. They have to bring 5 objects that are that color and share it with the class. John got blue so he got to bring legos, Thomas the Train, a book, a post office wooden structure we have, and a car. He was ready. We got to school and he was supposed to "sign" in, a ritual they have the kids do. He was signing in the wrong area and he was corrected. He started "stabbing" the paper with the marker, then scribbled all over it, pushed the table around and then started writing all over the floor. I went to grab him and begun cleaning it up, when he ran to the other side of the classroom and started throwing the blocks all around the room. Parents were staring in shock, while the teacher and I dealt with it. A little girl came up to John and told him that he shouldn't throw when he's mad. The teacher is very good with John and she turned to me and told me she would call me if he wasn't doing well. I left and John had a few "sensory" things come up (where he wanted to use his hands in the paint instead of brushes, took off his shoes in the sand, etc.), but no more behavioral issues.

Tonight at home, John became out of control again, running around the house, destroying order and organization. I gave him a time out, during which, he was jumping up and down, throwing himself on the floor, and carrying on. I kept adding a minute every time he'd bang his head or slam his hands on the wall. Once the timer went off, the tears stopped, a huge smile came over his face and he ran to me for his "after time out hug". It's almost as if the timer beep is what he can use to bring the anger under control.

What I didn't know until later today was that Bonita Unified School district showed up yesterday at his preschool again for a second day of observation, that I was unaware of. She called today because she heard I had to take John home. So, I told her about the last two days. They are gong to observe him again next Monday.

I'm a video editor and I'm working on a large project on a Documentary on the Life of Fr. Damien. He is being named a Saint in October. We received a St. Damien medal recently and John has taken a fond interest in it. I also made duplications for a priest of the Damien chaplets with the prayers and songs you can say to Damien, asking him to pray to God and intercede on your behalf. The chaplets I made were on CD, so every once in awhile, I pull one out of the bunch and put it in to make sure the duplication burn was good. So, John has heard it play a lot. He learned the song before I did. He now takes his Damien medal to bed with him, and sings the song. I pray with him and it's cute to hear him ask Jesus and Fr. Damien for a "marigold" (miracle). I want to help John so much. He is doing so well from where we began 18 months ago, gaining speech, cognitive skills, reading skills, etc. But, emotionally, he's lost. There is this cloud that comes over him, his sensory information gets in the way at times, and he is out of sorts. I feel so bad for him and just want more than anything to give him peace and take away the anxiety he feels. The best I can do for him right now is pray that he gets his marigold.

Moving Forward

We met with the autistic specialist again and here were her recommendations:

1. In Home Behavioral Program - to deal with social anxiety, separation anxiety, emotional control, eye contact issues, and potty training

2. OT and Speech Sessions (out of pocket)

3. One-on One Aide in Classroom to assist with re-direction and help him maintain focus and attention

4. Orthopedic to look at his feet and ankles, which are weak and turning inward.

New Trigger Discoveries

We have made huge progress over the last year and as John's language continues to develop, I am noticing new triggers to his behavior. He is know able to communicate his feelings better, so I am able to understand some of the "why" s behind his behavior. It seems that separation anxiety and social anxiety are playing a HUGE role in how he behaves in public. In the home, he communicates better, socializes better, and is more animated. It seems to be an INTENSE shyness in public that is hindering his pragmatic speech and social development.

As noted by the neuro-psycologist, he has a social interest, but he tends to be on the outside watching in, trying to figure out how to break in. If I am with him, he wants me to hold him and if someone talks to him, he often will answer and then bury his head in my shoulder, with a feeling of being shy.

We've seen progress over the last few months with social communication. He acknowledges other children with hellos and goodbyes. He answers questions when he is asked, often in a full sentence. For example, "John are you OK?" He responds, "Yes, I ok." as opposed to just "yes". He is asking his own questions now, which was a huge step for him. He is very good at asking for something he wants me to get him, using language instead of taking me to the object.

He has joined a MY GYM gymnastics class, which he loves and will be attending a Parent Participation PreSchool in the fall, which emphasizes on social integration rather than academics. Academically, John is taking everything in and is doing very well. He counts to 200, reads digital clocks, understands time, knows bigger and smaller, counts objects, sight reads 50-100 words, knows every street in La Verne and can tell you how to get to certain locations by telling him where you are starting and where you want to go. He almost seems to have a photographic memory when it comes to directions and reading. His favorite toys or things to do right now are cars, the computer, riding his bike, and reading books. His favorite book right now is "Llama Llama misses Mama", which is another reason that makes me think that separation anxiety is a problem for him. He likes to look at the pictures and talk about the Llama going to school and being dropped off by his mom and not knowing what to do when she's not there. The book's lesson is that Llama can love his Mama, but he can also love school if he gives his friends and teachers a chance....and that Mama always comes back. He loves screaming the line in the book that reads "Mama, you came back!"

NeuroPsych Evalutation Report

We received the evaluation report from Dr. Seibert regarding John's evaluation from Feb-April.
At the time of this test, John is considered 3 years, 2 months old.
Listed below are some of the highlights from the 12 page report:

Areas of concern defined by parents:
1.He needs to be taught certain things that other kids seem to pick up naturally
2. Demonstrates some echolalia (repeats the ends of some questions when asked)
3. Preoccupations with narrow areas of interest and focus (in phases)
examples: clocks, lining up cars, left-turn arrows, train tracks,& reading clothing tags
4. Frustration tantrums -- problems managing anger
5. Craves sensory stimuli (specifically with hands/touch, chew non-food items)
6. Trouble with eating (messy eater, prefers to use hands, overstuffs mouth)

Areas of concern Socially:
1. Limited eye contact
2. Unable to show comfort to others in distress
3. Some pretend play
4. mostly parallel play

Areas of Concern defined by Current Teachers:
1. Little Attention Span
2. Easily Destracted
3. Limited Spontaneous Speech
4. Limited to no interaction with other children
5. Loves sensory activities (finger painting, eating with hands, feet in sand)
6. Limited interest in classroom when given free time (lines up cars or 'reads' a book)
7. Delayed academically
8. No eye contact

Things the teachers did not notice:
1. No strange or odd preoccupations
2. No behavior problems
3. No transition tantrums

Observation In the Clinic over 2 observation days:
1. No tantrums or upsets
2. mild mannered
3. Reduced eye contact
4.quiet most of the time, with only one-word utterances
5. Poor intelligibility of speech
6. Fairly distractible, but was able to maintain focus if sitting on lap, bounced, or squeezed

Observation at School:
1. John did not remain on carpet square during storytime and had to sit on teacher's lap to maintain focus
2. Wandered room
3. Responded to yes/no questions
4. Kids lined up to wash hands, John consistently wandered out of line; needed re-direction
5. Food placed in front of him, told to wait, kept putting hands in spaghetti; needed to be reminded to wait multiple times
6. Facial expression blunted most of the time
7. Complied with verbal instruction but never made eye contact; appeared not to be paying attention, but would respond appropriately
8. Messiest eater in the class
9. After lunch, wandered over to line up cars
10. Wandered to book area, opened book, sat down, and "read" it
11. On playground, rode tricycle alone most of the time
12. Smiled at girl who climbed on "caboose" of tricycle
13. Stopped bike purposely to have 2 other girls crash into him; all giggled; John repeated again
14. Gravitated to outskirts of playground most of time
15. Seemed to be "in his own world"

ADOS test (Austim Diagnostic observation Schedule):
1. John responded to name by turning toward examiner
2. Poor eye contact; used eye contact to get the examiner to do something again
3. Showed some shared enjoyment with examiner, but not consistent; interested mostly in having sole control over a toy; needed to be re-engaged to play with examiner
4. Did not spontaneously give objects to examiner; but would comply after repeated requests
5. Could show functional use of toys when prompted but did not demonstrate any symbolic play on own
6. Did not initiate any social interactions, but did not mind the examiner playing alongside him
7. Produced single word utterances, most not intelligible
8. Showed only occasional, unusaual sensory behavior -- objects in mouth
9. According to ADOS, fell within the spectrum, but not autism, per se

GARS test completed by parents scored an 81 -- meaning "possibly" has autism

Other Tests Administered:

• DAS-II - Differential Ability Scales - Verbal & Non-Verbal Cognitive Development; John scored in the 66th percentile for Verbal Comprehension (average) and 58th percentile for Naming Vocabulary (also average); For the Non_verbal section, he scored in the average for Picture Similarities, but scored mildly impaired on Pattern Contruction; His total scores for this test was a 96, and fell within the average range (39th percentile)
• Although the examiner felt that the scores need to take in account that John had a very low attention span, needed frequent re-direction to the tasks at hand, cues to remind him to persist in his effort, prompting to consider the full range of answer chocies before responding, etc.
• PLS-4 - PreSchool Language Scale - measures comprehension and expressive language skills; John's auditory comprehension scored of that of a 2-year 11 month old child (average range for his age) Most advanced skills he showed was the ability to distinguish activities that were day from activities at night. He could understand picture analogies, identified objects, identified colors and common activities, understood quantitive concepts (one vs. all), and descriptive concepts (big vs. small) Could follow 2 step commands, but COULD NOT show spatial concepts (on, off, in, out of), pronouns (I, me, you) or negatives (show me the baby that is not crying) His scores resulted in that of a 2-year 8 month old, which is on the low average for his age range.
• VABS-II - Vineland Adaptive Behavior Scale - questionnaire filled out by parents; day-to-day functioning;
  
• Communication scored low at 1 year 11 months;
  
• Expressive Language scored at 2 years, 10 months;
  
• Written Language was HIGH at 4 years, 3 months - able to recognize upper and lowercase alphabet, own written name in printed form;
  
• Daily Living Skills ---
  
• Personal Care-2 years 9 months,
  
• Domestic Care - 2 years, 2 months;
  
• Community Functioining HIGH at 4 years 5 months
  
• SOCIAL skills - low at 1 year, 7 months;
  
• Play behaviors -1 year, 10 months
• Coping - 2 years, 7 months
• Fine Motor - 3 years, 5 months

DIAGNOSTIC IMPRESSIONS:

• Basic Language skills have caught up to low average-average range, he still shows delays in speech intelligibility, as well as in pragmatic use of language in social/communicative ways
• Delays in age-appropriate social and play behaviors
• Shows some atypical restricted and repetitive behaviors
• Falls short of Autism Diagnosis at this time
• However, meets criteria for PDD-NOS, Pervasive Developmental Delay, Not Otherwise Specified, otherwise known as "atypical autism"
• He has shown signs that intervention boosts his progress

RECOMMENDATIONS:
1. Parents should request an IEP (Individulaized Educational Plan) from Bonita Unified School District based on this second opinion requesting:

• Placement in a classroom with a better teacher-to-student ratio than a typical educational classroom; Should have curriculum appropriate for average-range overall intellectual level, but with resources that meets his needs for supervision, assistance, difficulties for sustained attention, and facilitation for social activities OR in a regular classroom with a one-on-one aide
• John clearly needs speech therapy to address intelligibility and language pragmatics
• John should receive an OT evaluation to address sensory issues and motor skills concerns

2. Parents should re-apply through regional center for services that may benefit them in the community based programs
3. Parents should seek additional play and social opportunities and instruction for John with peers close in age; John needs facilitation to initiate and sustain engagement with other children and verbal cues to help him play
4. Seek parent education and support services

Articles on Autism & A Poem

I have some current news articles on autism.

Here is a USA Today article that talk about how some kids with autism can recover and become undiagnosed.

Here is an article from Time on a genetic clue that may eventually explain why autism affects boys rather than girls.

I also found a poem that touched me. Read below.

Walk With Me

Walk in my shoes
for one single day.
Then you'll see why
I need to pray.
Come live in my home
for a week or two
and then remember
I am just like you.
I didnt ask for the things I was given
I didnt choose this road I have taken
Walk a mile with me hand in hand
Then perhaps you will understand.

I'm not really complaining
about the stress in my life,
I know that we all have
some toil and some strife.
But walk with me, when you think
I am wrong, walk with me
and you'll start to belong.
Embrace my sorrows,
like they are your own,
And then you will know me
And see I have grown.

The journey I take
is different from yours
My life took one of those
unexpected detours,
But this road that I travel
is not really so long,
If the people who watch me
will join in my song.
Listen to my footsteps
and watch how I dance
And then you will know me
and give me a chance.

Take heart and remember
It can happen to you,
who knows where my pathway
will cross over to you?
So speak to me softly
if you can't understand
Remember I once stood
right there where you stand.
And walk with me gently
when the day is at end.
And then I will know
I can call you my friend.

copyright 1999
Sally Meyer