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.  

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.

Visit with Dr. Bauman & John's Diagnosis

On Tuesday, John, Bill and I visited Dr. Margaret Bauman, who is an Autistic Specialist in Child Neurology out of Massachusetts General Hospital. She works with Children's Services at Casa Colina and travels every quarter to visit. We had an hour-and-a-half appointment with her for a second opinion/diagnosis and next steps.

First of all, I want to say that it was a pleasure to talk to her. She does research into the causes of autism, as well as treating patients with Autism and has a good understanding of the development of children. She suggested so many things and gave us such a good analysis of the situation.

To see Dr. Bauman, an exetensive packet of information must be supplied that includes birth records, hospital records, any testing scores, analysis, or assesments, etc. She also met with John's teachers at Casa Colina and spoke to them about their observations. When Bill, John and I arrived, we went into an office with lots of toys to keep John occupied. (6 months ago, they wouldn't have kept his attention, but today, John was able to play most of the time without being re-directed. During the last half hour, he became more 'needy' of my attention and even started to do things like climb on the table and laugh after I told him to stop)

Dr. Bauman talked to Bill and I a long time, asking us questions about his development, behaviors, things we've noticed, therapies we've done, improvements we've made, etc. After our discussion, she gave us her assesment of John.

She believes that John has PDD-NOS. To understand this, let me break it down.

PDD is the category, which is Pervasive Developmental Disorder.
There are 5 disorders that fall under the PDD category. They include Autism, Asperger's, Rhett Syndrome, fragile X syndrome, and PDD-NOS.

In simple terms, the NOS, means Not Otherwise Specified, meaning that many symptoms are present that resemble those other 4 disorders, but not enough to receive a diagnosis.
Now, to make it clear, PDD is the autistic SPECTRUM, so all 5 of these diagnosis are on the spectrum, but to a varying degree, with PDD-NOS being the one that shows the least amount of symptoms.

There are a few things that she pointed out that are a cause for concern. A few that we talked about are:
- his lack of interest in people, limited eye contact
- his play skills (allows others to set the framework of play and then he 'learns' play, rather than naturally picks it up)
- his irregular sleep patterns
- sensory issues
- eating issues

In moving forward, she would like to find out WHY John is showing these symptoms and if other things are wrong. She is sending us to 3 other specialists to begin with.

1. a developmental optomitrist - She wants visual perception, visual tracking, and depth perception looked at. Not what he sees, but how he sees. This could lead to an explanation of limited eye contact or limited social interaction. (From PubMed.Com: The role of the optometrist in treating children experiencing learning disabilities embraces numerous areas beyond the customary optometric services. Etiological, diagnostic and therapeutic factors are discussed stressing visual functional disorders, perceptual-motor and developmental lags and cognitive style.)

2. a Gasteroentologist, which will test him for acid reflux, which could explain his poor sleeping patterns, resulting in tired, lazy, and poor concentration/attentive skills. She also wants them to confirm or rule out a lactose intolerence, so we know if we should keep him on or off dairy.

3. a Neuro Psychologist that would look at cognitive skills and agree/disagree with the diagnosis. A neuropsychologist is a psychologist who specializes in studying brain behavior relationships. Neuropsychologists have extensive training in the anatomy, physiology, and pathology of the nervous system. (Sensory issues & problems deal with the brain's inability to process the information correctly that the nervous system is sending it) This person can also be involved in the IEP (Individualized Education Plan) meetings with the School District. She can help to be an advocate for John's Educational Needs.

After seeing these 3 specialists, we will then re-visit Dr. Bauman in January.

The other thing that is recommended to do is at Casa Colina. We are getting a swallow test done with a speech pathologist. The teachers at Casa think he is aspirating while eating. (inhaling food/debris into the wind pipe or the lungs) This is caused by apraxia or low tone in the mouth. Basically, poor oral motor skills causing his muscles within his mouth to not work together while eating. (She also told the START teachers that we may want to consider a sleep study because if he is truly not sleeping well, it would explain many of the symptoms John shows during the day from lack of sleep.--although she didn't mention it to Bill & I)

Now, as far as moving forward with his "education", she gave us a bunch of advice. She says she does not want to see him in an autistic class or a class with kids who have behavioral problems because she believes John needs models in the classroom to teach him how to interact socially. She is afraid that it will hinder his development to "learn" by picking up on autistic behavior and not have a model that he can raise up to. She said that Katie has been John's best teacher and helps to structure his play.

So, she recommends that he be put in a preschool program that is "integrated" with children who are "normal" , as well as slightly delayed, but not with kids that have behavioral problems for fear he'd model the behavior. She wants him in the bottom or the middle, as far as skill set, but not at the top. She says other states have wonderful programs for this, but she doesn't think California has anything set up like this. She said that the integrated class would have 2 teachers and then a one-on-one aide for John to be guided back into participation if he wanders.

For me, Dr Bauman's words, diagnosis, and advice validated all the feelings that I have had --- some days feeling like it's "textbook autism" and then other days that seemed like the diagnosis was wrong. But, to be clear, the diagnosis was never wrong. 6 months ago John was a different kid. He had no speech, his cognitive level was very immature, he had no joint attention (ability to point out objects), etc. After understanding this disorder, the only diagnosis he should have received 6 months ago was autism. The fact that we are at PDD-NOS is an indication that early intervention is working, that Neurofeedback is working, and that with prayer, hope, hard work, and a battle plan, there is a chance for healing.