Aptos, CA psychologist: parent with child with autistic spectrum disorder & epilepsy asks for advocacy help.

Thursday, April 21st, 2011

A mother of child with special needs (Asperger’s Disorder) emailed me asking for help. She lives in Redlands, CA. Her child has an Autistic Spectrum Disorder, is hearing impaired and has epilepsy. The child is in elementary school.

Parenting a child with these kinds of problems can be overwhelming. As there are many parents who face these difficulties, perhaps a general post may be helpful both for this one mother and for other families. Most importantly, know that there is help, there are resources and you don’t have to do this job alone.

The mother wants an advocate to assist her in the IEP process. She asks for immediate help.

She — and anyone in California — can call me for a free 15 minute consultation concerning psychological issues. Call 831 688-6002. Leave name, number and brief information as to situation. I will e-mail back a time to call me.

Before calling, find the most recent three year psycho-educational assessment done for the child. Every three years in California the school psychologist, Resource teacher and other professionals write reports summarizing progress. Those reports typically contain invaluable information. I will ask questions about those reports and may ask you to FAX it to me.

For more information about me, Dr. Cameron Jackson, go to Monterey Bay Forum, www.freedomok.net look at the top where it says Autism. Also look under the Categories for Autistic Spectrum Disorders. I wrote those posts.

I have 5+ years experience as a school psychologist in California and I am a licensed psychologist who specializes in assessment of children and adults. I am particularly interested in Autistic Spectrum Disorders.

Here is some general information that may be helpful to this mother and other parents with children with special needs, developmental disorders and autistic spectrum disorders:

1) The parent has the right to call an IEP meeting, again and again. This parent should find out what the IEP coming up is about and get an agenda ahead of time. Let the school know in writing that you as parent plan to request a series of meeting until all issues get resolved. Send the letter to Special Education Director, Principal, School Psychologist. Keep a copy for your file. Do not sign any IEP unless completely satisfied.

2) This child with some form of autism, epilepsy and hearing impaired is probably best served with an IEP under Other Health Impaired. And not served well under Specific Learning Disability (SLD). Autistic-Like is an education category that might be appropriate IF the therapy component is in place. From what the mother told me there is no appropriate therapy going on to address social deficits.

So this parent needs to know what Category the child receives services under and to request that the Category be changed to Other Health Impaired. All the mother needs is a brief letter from her doctor.

3) By California law, this child is entitled to a Free and Appropriate Public Education — called FAPE. It is not appropriate to put a fifth grade student into a first grade class for example. And, if the school district does not have appropriate public school classes then the district may be on the hook to provide a non-public school placement. Yes the schools and every public agency has budget woes. So, this parent needs to get some self education via the Internet as to what FAPE means.

From the tone of the email this mother sent, it appears that she feels lost in the system. Perhaps this mother can connect with the school psychologist for assistance. Also, there are a number of non-profit organizations that focus on assisting families with special needs. This mom might do well to explore which ones are in the Redland’s CA area. Up in the Santa Cruz-San Jose area for example there are two organizations: SPIN and PHP.

One possible advocate in Redlands, CA: When I Googled Redlands, CA Special Education an article popped up about a school counselor who wants to improved the IEP process. Her name is Yurida Nava and information about her is in the article below. I do not know anything more about this person than what is written below.

Student Encourages Advocacy for Special Education Students
November 23, 2009
While working as a school district translator, Redlands School of Education counseling student Yuridia “Yuri” Nava says she became concerned some special education students were not being well served by their school counselors.She says the counselors often attended Individualized Education Plan (IEP) meetings with students, but did not always advocate for the students during discussions about which services they should receive, what education goals should be set and how their day-to-day school life should function.
“The counselors were there, but I felt they were not really a voice for the students – the IEPs were sometimes finalized in ways that were not in the best interest of the students,” Nava said.
Now, Nava is working to change those shortcomings by calling attention to the problem. One step in that effort came in November, when she presented her research during the California Association of School Counselors conference in Temecula.During the conference, she shared her research exploring the preparation levels of counselors working with special education students. As part of her study, counselors in two school districts were surveyed about their knowledge of the IEP process and whether they were prepared to help special education students and families.
She said she found that most counselors did not recognize their role in advocating for special education students. Some counselors also did not fully understand the IEP process and the role that they should play, she said.
Nava – an aspiring counselor who would eventually like to get her doctorate – said she credits assistant professor Janee Both-Gragg with encouraging her to conduct and present the research.
“The professors, including Dr. Both-Gragg, are like fuel – they fuel the passion that you brought when you came here. They prepare you and encourage you to do more than you ever imagined,” she said. “I’m so excited and thankful to be presenting at the conference and I know I wouldn’t have made it to this point without their support and belief in me.”

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Aptos psychologist: Asperger’s or Non-Verbal Learning Disability? An example of Peter…

Sunday, December 5th, 2010

written by Cameron Jackson DrCameronJackson@gmail.com

Does Peter — this is a hypothetical clinical case — suffer from NLD or Asperger’s Disorder or PDD-NOS? So some combination? What is the best fit? Many of the facts are true however names and identifying information has been changed to protect privacy.

Remember the children’s verse: “Peter, Peter, pumpkin eater… had a wife and couldn’t keep her… so he put her in a pumpkin shell… there he kept her very well… ”

It certainly was socially inept of Peter to keep his wife locked in a shell….Was that the best that Peter could do?

Non-verbal learning disability (NLD) was much talked about 10 years ago. Maybe because NLD never made it into in the Diagnostic and Statistical Manual (DSM-IV) it’s only known in certain circles.

In some ways NLD is similar to 298.0 Asperger’s Disorder — which is a diagnosis in the DSM-IV.

Many people somewhat approximate the diagnosis that are in the DSM-IV. The issue is to find the best fit.

Let’s see what is the best diagnosis for Peter. A number of facts are changed to protect privacy. Let’s see whether Nonverbal Learning Disability (NLD) or Asperger’s fit as a better fit for this young man.

Peter — not his real name — is in his middle 20′s. He went to private schools in Santa Cruz County and finished at an alternative high school. Both his parents finished college and work professionally. Peter is an only child.

From his father for years he heard, “Just step up to the plate… you can do it… Try harder…” Yes, Peter has low self esteem.

Per comments from his teachers, Peter has always had problems with organization and finishing assignments. Sometimes he failed classes in high school as he did not turn in assignments. He teachers comment on his high language abilities and creativity.

Peter was never identified for special education. In 8th grade the resource teacher sent his parents a letter saying that he did not have a learning disability. As it was simply a letter sent to the home there was no one to one discussion with the school psychologist.

Had there been a school meeting, a psychologist would have noted that there was a huge, larger than 45 standard scored difference, between visual abstract reasoning ability and general academic performance. A 15 point difference is statistically significant and important. So here Peter has a 45 point standard score difference between visual abstract reasoning abilities and general performance and has no learning disability? Of course he has and did. It was not identified however in 8th grade.

Because there was no meeting of psychologist and family in 8th grade Peter’s disabilities were not identified. That Peter has extraordinary high visual abstract reasoning abilities as well as very high verbal reasoning abilities lessens the likelihood that Non-verbal Learning Disability best describes Peter’s difficulties.

Peter has heard for many years, you can do it… just step up to the plate….you’ve got great talent.

Peter is not convinced that he can do it as he flunked out of college. He had to take and pass a particular class. Having flunked it once he went back to the same instructor, the same lectures, the same assignments. How to apply certain skills to improve him portfolio was the task he flunked before. And — as you might guess — he flunked it again. And then he flunked the same class a third time. Clearly there was no academic advisor available to recommend a different strategy to getting a pass in the required class.

Peter started college at age 21. Before going to college he got some tutoring from a Santa Cruz tutoring organization. It is my understanding that this tutoring organization lacks psychologists on staff and does not use diagnosis. So, again, similiar to 8th grade, his family did not have input into Peter’s disabilities based on psychological assessment.

It does not appear that there were any accommodations put in place to assist Peter to succeed in college once he got there. Peter was across the U.S. in a different state. He had never had an IEP and he had never been identified as having developmental learning disabilities.

What is Peter good at doing? He can tell oral stories. He can write stories. He does have difficulty finishing the writing of stories. He does better with the structure of a class to finish a story.

The purpose of diagnosis — after getting the best fit diagnosis — is the suggest appropriate treatment. It looks like NLD is not the best fit diagnosis for Peter.

However, Peter has heard from one parent for many years that he has NLD. Probably based on these discussions, Peter thinks that hi is neurologically defective. One step in treatment is to change the mind set of Peter to view himself as neurologically different not neurologically defective. Web sites such as Wrong Planet.net may assist Peter to view his differences in a positve way.

Per the article included below NLD is due to traumatic brain injury of the right side.

The following was found by Google to nonverbal learning disabiliites and was written around 2000.

Success for Young Adults with NLDBy Kathy Allen

“NLD (Syndrome of Nonverbal Learning Disabilities) is a complex disorder of the brain that causes wide-ranging effects on the day-to day functioning of young adults in work and college.

The most likely cause for this disorder is a congenital or traumatic injury to the right brain. This is the location of the majority of the long, mylenated fibers which are the “highways” of the brain. The right brain takes care of many diverse functions such as planning, organization, social interaction, maintaining mood, and coordination.

Although each individual is affected differently, this disability generally impacts a young adult’s ability to organize schedules, carry through on tasks which require multi-step planning and follow-through, and deal with changes in time and place. Difficulty with subtle nonverbal cues are also common in most NLD students. NLD often causes high anxiety and impairs the fluid use of socially correct language. Double meanings, sarcasm, and polite white lies are all difficult for these young adults.

Many of these students are very bright academically, and it is easy for professionals and teachers to be confused or annoyed by the gap between their high academic skills and their poor organizational abilities. Unlike blindness or other sensory disorders, this disability is invisible. While students with cerebral palsy are routinely provided with note takers or computers,it is very difficult for college students with NLD to receive services. Frequently, these students are told they are irresponsible and should just try harder. But since NLD is a serious condition, the student is only able to achieve success when specific interventions are in place. Without help, students can become crippled by anxiety and shame, frequently dropping out of school and developing severe psychiatric problems. With these interventions, many students succeed in work and school.

The methods used are neither complex nor expensive, but they do require a radical change in perspective. First, professionals must be educated about the disability. This will lead to the understanding that right-brain injuries are real, although invisible, and pose a great challenge to the student. Counselors must be positive and affirming, and let the student know that they are a team who will work together to find strategies and support for the student. Young adults with NLD are so used to school and work authorities who are frustrated with them that even this simple change in perspective can be very powerful. Having an informed, helpful person to aid in the student’s problem-solving is crucial to student success. Given the time constraints that many professionals and teachers face, a question often asked is, “How can I achieve a basic understanding of NLD?”

There are excellent articles available at www.NLDline.com or www.NLDontheweb.org However, a model I use with students may be useful in seeing how the condition impacts day to day living.

(Here I insert the model with the island in the middle with the palm trees, and grass hut, then other concentric circles that get into the area of comfort like words about facts, predictable safe people, routine and structure. Outside of that are the circles with time and spaces that change, unpredictable people, ideas about theoretical people.)

From this model, it can be seen that the student with NLD is most at home in the world of words about unchanging, intellectual facts. Students enjoy and excel at learning the vocabulary and rules about everything from physics to computer games. This ability is a mixed blessing, as our society often defines people with large vocabularies as being very bright and capable in all areas. Instructors and counselors may be surprised and indignant when NLD students do so poorly in organization and time management, forgetting deadlines, appointments, and changes in class time. We know from experience that most students with NLD will do best in classes or jobs that have a heavy emphasis on facts, memorization, and a built-in schedule. Classes in which the bulk of work is done in class are especially successful, such as writing workshops, labs, or practicums which use special equipment. This is because the class itself provides the structure for the student.

Predictable, accepting people are also near the area of comfort, and from this we see that students/workers find it easiest to succeed if they deal mainly with these types of people. Most students with NLD suffer from a great deal of anxiety due in part to the disorder and in part from their inability to read faces and nonverbal language with ease. NLD students should have access to instructors and counselors who will be accepting of the fact that the student may need accommodations.

Just outside the comfort zone are ideas and inferences about facts. We can see that critical thinking may challenge students a little more. Drawing conclusions, solving problems that are written or presented in a different way than they were taught, and some aspects of inferential thinking may be more difficult than one would expect. Symbolism in novels, stories, and poems can be quite difficult for these students.

Moving further outside the zone of competence, we see that issues of time and space will pose challenges for the student affected by NLD. It may take anywhere from a several days to a few years for a student to navigate around the college or large work area. Support staff can help offering an escort to help point out and write down landmarks, a “script” of where to go, while some students with NLD will use a map.

It is equally difficult for our students to cope with time. Time is simply not a concrete fact that can be seen or touched, so it has little reality for these students. Regular appointments for work meetings or office hours are preferable to those which change. Use of an appointment book is very helpful. Ideally, a student will be shown several different ways to keep track of appointments, rather than only one. For important appointments, an e-mail or phone call from a counselor or coach can be a great first step. After a few weeks, the student can call the coach as a check-in that he/she remembered the appointment. It should not be assumed that the student is unmotivated based only on ability to be present at an appointment, as this is a part of the disability.

Far outside the comfort zone, (near the alligators!) we find unpredictable people and those who are ignorant of the impact that NLD has on a student. “Unpredictable people” for NLD students, are those who moods or disposition alter quite a bit from day to day, those who have a very neutral face with little expression, or those who raise their voices at unexpected times. This can be very stressful for the student. If the unpredictable person is accepting of the student, however, most students can eventually learn to cope with this type of person.

The greatest problem for students with NLD are people who are know nothing about NLD and are aggressive or hostile toward the student. Many are sure that the student has just been overprotected and needs to deal with the “real world”. While “tough love” works with some students, it rarely does with the NLD student. They misread “tough love” as meaning the employer or instructor hates them, and they rarely understand such vague concepts as “pull yourself together”, or “grow up”. Instead of making positive changes, they are flooded with anxiety.

It would be best for students to avoid this type of person if possible. If not, the student should go with an anchor person who can help with the situation. Role plays in which the student successfully explains the disability to a sympathetic listener, even by initially giving an information sheet about NLD and answering questions, should be extensively used first. This can be followed by explanations to an sympathetic adult (such as an instructor) in a real life setting. Only then should role plays toward a person with a more negative mindset begin.

NLD students have so often been told, “You ought to know that by now!” that they are very hesitant to seek help. It will help to tell the student that you will not shame her for asking “stupid” questions. After an explanation, have them explain the work assignment back to you. It’s useless to say, “Do you understand?” when a student isn’t sure what he or she might be missing.

Finally, for many students, one of the most difficult things in college or work is to make a hypothesis about the imagined behavior of people not personally known to the student. This struggle is seen in work when young adults deal with the general public, especially with frustrated customers. It’s also seen when students try to respond to questions in literature classes. Tutoring may be helpful here, as are templates for writing. In the same way, a worker should receive clear directions about how to handle people related problems. The more detail offered, the better the results will be.

Key strategies in helping the student will include:

· Understanding NLD

· Using student’s strengths in memory and rules to offset other problems

· Providing extra help in management of time and organization

· Use predictable, accepting people to problem solve solutions.

· Emphasize self-advocacy through scripts and role play

· Offers of help develop systems for student to track appointments

· Understand that the student is hesitant to ask for help.

· Offer tutoring for written assignments, especially novels or stories which involve complex characters and symbolism.

There are many other ways to help, including low and high-tech aids, but they are beyond the scope of this article. Although the focus here has been on the young person’s challenges, NLD young adults also have many wonderful traits such as persistence, reliability, honesty and a desire to succeed. Helping them to use their strengths to compensate for their problems is the key to success.

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Aptos, CA psychologist: Is Asperger’s Disorder a “hot” diagnosis? Why?

Friday, March 19th, 2010
wash hair 148x300 Aptos, CA psychologist:  Is Aspergers Disorder a hot diagnosis? Why?

washing hair

Like designer jeans, Asperger’s Disorder has become a “hot” diagnosis.

Asperger’s is much more preferred by parents as a diagnosis than a diagnosis of Mental Retardation. Or Autistic Disorder. It’s easy to see why: In Asperger’s Disorder the person’s cognitive I.Q and functional abilities (self care abilities, ability to work) are in the normal range.

In Asperger’s Disorder, only the social abilities are in the Borderline or Deficient range.

One young woman I recently had the opportunity to assess (a young 18 year old with Asperger’s) said that she preferred to learn over the Internet — with her lap top on her bed — so she did not have to interact with people. She views her mother as her best and only friend. She tries to stay “with it” by not showering and having dirty hair — as that is socially acceptable here in Santa Cruz, California. She is right — in Santa Cruz, California dirty hair and rarely washing hair or taking showers is “in”. In certain circles.

written by Dr. Cameron Jackson DrCameronJackson@gmail.com Monterey Bay Forum www.FreedomOK.net

I got this — thank you — from Autism Blogger:

“Storyline on the new NBC sitcom “Parenthood” is raising public awareness of Asperger’s syndrome – at least according to Google searches.

“Asperger’s” (and various misspellings) were among the top Google trends Wednesday morning after the second episode of the hourlong drama, which features a character with Asperger’s, aired Tuesday night.

“Asperger’s is a form of high-functioning autism often characterized by inability to pick up on social cues, heightened sensitivity, and an intense focus on only one or a few interests. Because it is at the low end of the autism spectrum, people without awareness of the condition may assume someone with Asperger’s is simply quirky or socially awkward. (This is not an accurate description of Asperger’s — Dr. Jackson www.FreedomOK.net

On “Parenthood,” parents Adam and Kristina Braverman (played by Peter Krause and Monica Potter) are told their young son Max (played by Max Burkholder) may have Asperger’s, and Adam is seen struggling to connect with his son.

“Parenthood” writer and executive producer Jason Katims has a 13-year-old son with Asperger’s, and has said NBC was “supportive but wary” about the Asperger’s plotline.

“They want to be careful of making something either feel too heavy, or something where you’re not talking to a large enough audience,” Katims told the Newark Star-Ledger.

“My hope would be that it normalizes it,” Katims continued. “So there’s no stigma to it, no mystery to it.”

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Aptos psychologist: Even MORE people will be diagnosed “austistic spectrum disorder”

Thursday, February 11th, 2010

The next version of the Diagnostic and Statistical Manual (DSM-V) more than likely will collapse Asperger’s Disorder and PDD-NOS into “Autistic Spectrum Disorder” (ASD). If you want to comment go to the following web site.

I think the new definition of ASD is cleaner and well written. It still needs something in the diagnostic criteria that addresses how substantially handicapped the person is by his/her particular symptoms.

The flip side of diagnosis is treatment. A diangosis of “Autistic Spectrum Disorder” should include the specific deficits — and degree of deficit — so as to suggest appropriate, individual interventions.

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Monterey Bay Forum is a member of various Web rings

Tuesday, December 8th, 2009

Web Rings which Monterey Bay Forum has joined include: Asperger’s Web Ring, Assistance Dog World, Children’s Advocacy, Northern CA Webring and Home Education Special Needs …
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Aptos psychologist: Easter Seals offers P.L.A.Y. autism therapy in Santa Cruz & Monterey Counties www.freedomOK.net/wordpress

Sunday, May 24th, 2009

written by Dr. Cameron Jackson, Ph.D.. L.D. Licensed Psychologist 831 688-6002

Children with a diagnosis of Autistic Spectrum Disorder (ASD) (Autistic Disorder, Asperger’s Disorder, Pervasive Developmental Disorder, NOS) have major social and communication difficulties.

Families need to be given the TOOLS how to have fun and be spontaneous with their children as they teach them. It is very hard on families to be social and engaging with ASDD children who seem to be in their own world, who seem to ignore their parents, who seem unaware of brothers and sisters.

The P.L.A.Y. project’s goal is to teach parents to PLAY in a fun way in developmentally appropriate ways. Not only the child – the whole family can benefit. Currently available in Monterey County, P.L.A.Y. is also available to Santa Cruz County parents. P.L.A.Y. is a vendor of San Andreas Regional Center which covers the four counties of Santa Cruz, Monterey, San Benito and Santa Clara. Pl.L.A.Y. is a regional center vendor for under 3 children. It is appropriate for children before attending school.

The following information comes from the Easter Seals site. There is a link to the site at the bottom.

“Easter Seals P.L.A.Y. Project (Play and Language for Autistic Youngsters) program started in 2006. The mission of the project is to help young children (up to age 6) with autism spectrum disorders and their families obtain interventions that consist of 2-3 hours of intensive, individualized therapy per day, and are integrated with other therapies saving the parents time and money.

“The P.L.A.Y. Project is unique in that it provides training for the parents of children with autism so they can implement therapy at home. Easter Seals has home consultants, including specially trained occupational therapists and speech pathologists, to implement the P.L.A.Y. Project, enabling them to teach parents how to initiate therapy in the home setting. A child with autism needs 20-30 hours per week of therapy to learn and grow as quickly as possible. This project is highly cost effective for families and enables the child to receive a continuum of service throughout their day.

“The P.L.A.Y. Project was founded by Dr. Rick Solomon, who has diagnosed and treated children with autism for over 15 years. Dr. Solomon’s initial study of 70 children with autism demonstrated that 65% of the children in the P.L.A.Y. Project made good to excellent progress. Solomon’s study has been given tremendous credibility with its recent acceptance for publication in the Journal of Autism and receipt of a National Institute of Health grant.

Goals of the P.L.A.Y. Project include:

Improving parent/child relationships.
Improving behavior of the child reducing stress within the home.
Including siblings in coaching and training.
Creating strong families including improved spousal relationships
Improving child development so children are ready for school.
Improving systems for families so services are integrated, accessible, culturally-appropriate and of high quality.
The P.L.A.Y. Project is partially funded by First 5 Monterey County, First 5 Fresno County and the Fansler Foundation.

“If you or someone you know would like information regarding the P.L.A.Y. Project, please contact Drea Martinez at 559-267-3952 in Fresno and Mark Wenzler at 831-684-2166 in Monterey.

“For more information about the P.L.A.Y. Project, you can also visit www.playproject.org.

Above comes from Easter Seals

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