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

Official Diagnosis: PDD-NOS

I haven't received the official report from Dr. Siebert yet, but after testing, John has received an official diagnosis of PDD-NOS (pervasive developmental delay, not otherwise specified). She suggests that he attend a communications delayed preschool. Once I get the full report, I will update the blog with her findings.

Neuro-Psych Evaluation

To bring everybody up-to-date:
John was diagnosed as "at risk" for autism at 30 months old by Regional Center
When he turned 3, he was evaluated by the school district, who said they do not see a developmental delay or signs of autism that impact education and denied any special educational services.
Regional Center then told us that since he had "provisional" or "at risk" autism to begin with, there never was a diagnosis in the first place.

SO --- we are going through a medical doctor, a neuro-psych to find out if John needs a diagnosis or not. Both Regional Center and the school district determine funding, so we thought we needed another opinion by someone who had nothing to do with funding.

The assessment will consist of parent and teacher questionnaires and interviews, as well as a few days of evaluation of John in different settings and at school, with other kids. We've had 2 sessions already and am looking forward to her assessment.

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.

Autism

I thought I'd take the time in today's blog to concentrate on Autism, the diagnosis John has received.

Autism (defined here by regional center) is a developmental disorder defined as a syndrome causing significant and sustained impairment in social interaction and communication, with restricted and stereotypic patterns of interests, behavior, and activities which appear before age three. Since Autism is a syndrome, all people who have the disorder will not have all of the different behaviors associated with the disorder. Autism is a lifelong disability.

Children with autism are slow developing self-care, communication, social or learning skills. These skills are often uneven, having good skills in one area and poor skills in another. The person will have limitations in understanding words and ideas, and may be inappropriate responses in sight, hearing, touch, pain or balance. Relationships with people and objects may be abnormal.


Here are a list of behaviors that are Characteristic of Autistic Children: (though a child may not show all of these, showing a significant amount of them could lead to a diagnosis of an Autistic Disorder)

• Difficulty expressing needs; severe language deficits
• difficulty mixing with other children (parallel play)
  
• Repeats words or phrases in place of normal responsive language
• Acts deaf at times. Tests in normal range of hearing, but not always responsive to verbal cues (doesn't respond to name when called, for example)
• Resists learning
• No fear or danger
• Resists change in routine
• Indicates needs through gesture (may lead adult by the hand, instead of pointing)
• inappropriate laughing
• resists cuddling
• physical over activity
• avoids eye contact
• inappropriate attachment to objects
• spins objects
• sustained odd play
• standoffish manner
• uneven gross/fine motor skills
• laugh, cries, or shows distress for no apparent reason
• unresponsive to normal teaching methods

John's Autistic Characteristics
I took John in for a speech delay, but had also noticed these things:

• would make eye contact for only brief periods of time - nothing sustained
• Abnormal behavior of touch (wanting his hands in my mouth or armpits all the time)
• Difficult time with pointing out objects
• Communication issues (would lead my hand to what he wanted)
• Scattered skills (on a development chart he would have some advanced skills and lack basic skills like stacking blocks)
• Didn't always respond to his name when called
• always in constant movement

I did not notice: problems with cuddling, social skills, interacting with other kids (although he did not have a lot of opportunity), spinning objects, odd play, inappropriate laughing, attachments to objects, etc.

Characteristics seen in his evaluation

• tip toe walk
• "W" sit on the floor
• did not respond to his name
• reduced eye contact
• low joint attention (ability to point or look at an object one is directed to)
• Could representational play (imaginary play -- pick up a phone and say hello)
• short attention span
• Difficulty with imitation (this one surprised me because at home,he imitates everything Katie does)
• Could hold crayon appropriately
• Completed peg board quickly in only 25 seconds
• Could retrieve hidden toys quickly
• Easily distracted
• Could follow directions in imaginary play (feed the baby, put the baby to bed)
• needed to be reminded to "watch where he was going"
• words used were not recognizable
• Difficulty in sensory processing
• preference for mother
• engaged in non-functional activity (turning lights on and off repeatedly)

The areas of concern were:
Social Skills : Tested at a 10-17 month level (he was 30 months the day of the test)
Language Skills: tested at a 6-9 month level
Problem Solving: tested at a 21 month level

An "area of concern" is determined when a child tests at 1/3 his age in any category. He was 30 months old when he was tested. Any category where he tested at 20 months or lower was labeled an "area of concern".

The pattern of development shows "at risk" behaviors for an Autistic Disorder. At this time, he has not been "officially" diagnosed with Autism. The pattern meets the criteria for an Autistic Spectrum Disorder. Early Intervention was recommended, as well as a re-test when John is 4 or 5. We are also going to be seeing an Autistic Specialist in October for a second opinion.

John's Diagnosis

The motivation for writing this blog is my son, John. He will be 3 in November. Two months ago, he was diagnosed by Regional Center with an Autistic Disorder. His "at risk" behaviors has led them to recommending an early intervention program.

I took him in for an evaluation due to a speech delay. By 2 years old, he hadn't turned his baby babble into understandable words. He had only 2 words that were close to the correct pronunciation -- and those were not "mommy" and "daddy". He could say 'mulk' for "milk" and "butter"!!! Mommy was "baugh-in". He just couldn't move his mouth the right way to get words out. He had created his own language for things and couldn't figure out why we couldn't understand him. Temper tantrums came from frustration and life was very difficult for all of us.

John was a high maintenance baby. He is and always has been "on the go". He is in constant movement, rarely at rest, often irritable, had times when he cry inconsolably, and had poor sleep habits. From the time he was born, he was waking up 5-8 times a night. Every 45 minutes to an hour, he was usually waking up. I nursed him until ten months old and went straight to a sippy cup with milk, skipping the bottle. The milk became a security blanket for him. He'd ask for milk all the time, sometimes foregoing meals to drink milk. If he was tired, upset, or hungry, he wanted milk, and I gave it to him. By 2 years old, he was drinking between 24-36 ounces of milk a day! I had suspected milk allergies and was switching to lactose free and lowering his quantities daily. When he was tested at Regional Center and we were given the diagnosis of Autism, I decided to pull him off of milk completely. That night, we got our first full night of sleep! From that night on, he slept through the night. Life was about to change! His ability to function during the day increased with sleep. I got sleep, which helped me function better in the day!

Regional Center's findings surprised me at first, but I wanted to help John. My mind was all over the place. If I need to place a label on my child to get him help, then there will be a label on him. But, what other effects do labels have on our kids? At what point do we ask ourselves, “slightly autistic or typical boy behavior?” Is Autism the buzz word for the next 5 years? Are kids that don’t fit into a box labeled “autistic”? But, at the same time, we need to get our kids help if they need it. How do we tell if the clinical stuff is right?

The answer is simple. Be a mother. Be there for your child. Know your child. Be cautious, but listen. Fight your child’s battles. Fight for your child. Do everything you can do that helps your child. Not all advice is worth taking. Weed it out. Find out what works for your family and your child’s needs. Pray for your child. Pray with your child. I’m just starting this journey, but to ignore that journey would not benefit John. I'm going to be a pro-active parent and get John the help he needs.