Here is a link to “youtube” to learn more:

http://www.youtube.com/watch?v=acV_CwhOOVk

If this project intrigues we suggest you contact DRA to find out more about their intentions and to help in their efforts to end this discriminatory practice eleonard@dralegalc.org or  510 665 8644.   www.dralegal.org.

Which colleges/universities are you attending?

• University of Southern California
• Mills College
• Walla Walla
• University of Iowa
• Community College

When did you decide you wanted to go to college?

• In  Grade V11
• In Junior year in high school
• When I was a little kid
• When I knew what I wanted to study: fashion
• After a gap year

Things they considered when choosing a college.

• wanted a small school because I needed one to one attention.  And, wanted a well rounded
  liberal arts education.
• applied everywhere, was good advocate for myself, looked to see what fit me best, looked for a person who would invest time with me.
• looked for a small college and structured LD (learning difference) programs.
• took a gap year after high school and then chose a community college.  I am not sure where I want to focus my education and need good learning support.
• I have a passion, fashion, and that propelled me to be interested in college.

When did you disclose you had a learning difference?

• Wrote about it in my application and then weeded out schools who weren’t interested.
  Checked out LD resources and asked what accommodations they offer. During the application process I was worried about losing my parents support at home as I have to have everything read to me. I also use Kurtzweil, a speech reader software. I chose Whitman where the Dean told all my professors about my learning challenge.
• I wasn’t afraid of disclosing my learning difference.   If they aren’t willing to both help me and give me accommodations then I knew it was not the right school for me.
• I went to a small school before Mills to gain confidence that I could be an advocate for myself.  Then, I was ready to apply to Mills.
• At a community college you don’t have to jump through hoops for LD support.  I also use
  the Intel Reader.
• I mentioned my learning difference in my application.  At Iowa State they are very helpful and take the extra step to be sure I am successful.

What special technology do you use and/or how did you build community at school?

• I use Kurtzweil, they gave me double time for an exam which I take in another room and am given a calculator.
• I have available through the college an I-Pod, Kindle, Intel Reader and Pens that record what is being taught.

• At college we created community:  Learning Styles Coalition.  We are involved in Project Eye to Eye, a national program developing a coalition of mentoring programs for students labeled with learning disabilities. Now, fifteen of us are mentoring in the Walla Walla Schools.
• I am in a large university (USC) and they have an extensive learning department.  Every class has a note taker and their notes are put on-line. We have a silent commons where kids who have learning disabilities can go twenty-four hours a day. Right next to it is the Writing Center where there are TA (technical assistants) in many fields to help us.  I get help with grammar from them.
• In my college there is no assistive technology so I work with TA’s and professors and have
  extended time for exams.
• At Mills there is a large population with learning disabilities.  I feel very comfortable talking about my issues.
• At my community college there is very little LD community.  My friends who are LD and ADHD are my friends and we help each other.
• I get extra time and I take classes (like sewing) to balance the academic work.   There  isn’t much community, except with my friends.

What are the differences between high school and college?

• Time management is a big issue.  In school we were in class from 8:15 to 4 pm.  In college we may have only two classes a day.  I had to find a place where I could study.  And, I really learned to be a self advocate.  My Mum did most of that in high school.
• At the beginning of each semester I offer to take my professors to coffee and tell them about my learning difference and what I need.
• In high school I had close relationships with my teachers.  In college if you fail he won’t be there for you.  It’s up to you in college.  It’s very important to get the teacher in line with you.  Make sure they know your name and that you are trying.
• In high school there was very little curriculum choice whereas in college you choose what you want to study. It’s very important to be passionate about what you choose to learn.
• In college you have to take the entire experience in your hands.
• Parents absence is a big change.  Those struggles makes you stronger, a better advocate for yourself.  A planner is essential.  Write it all down.
• In college you are a face in the crowd.  To achieve you need to know the things you are good at and vice versa.  College can be a big change.
• I learned you have to go to office hours and talk about the test with the professors. You can raise your grade by keeping in close contact with your professor.  And, be sure to get a reader if you need one.
• Communicating in college with your class mates is very important.
• Find people who study like you do.

Think back to your freshman year, what stands out as most important?

• Self Advocacy is most important.  Parents, ask yourself, have you prepared your
  child to be a self advocate?
• Take a light load in the 1st semester.  It’s a lot just to start college.
• Make sure the professor cares about you.

What did your family do for you when you were in school?

• I started to do panels in grade 7.
• I did role playing with others to learn how to be a self advocate.
• My parents called a teacher to tell them that I was coming to ask for something and asked that they give me space and listen to my request.
• I learned to advocate for myself.
• I was the black sheep of the family.  I never took my parents seriously.  I learned by being in a LD community.   Safe Voices, a project of PEN, taught me how to advocate.

Summary Comments:

• Self advocacy is the key.
• Check out who is the person in each class who sits in the front row.  They are generally a “know it all”. Get into their study group.  I don’t always disclose about my learning challenge at the outset with those groups. If there is a creative aspect I ask to do that.
• Professors can be creepy.  They have brains but mostly no facial expressions. So get to know them.  If they deny you what you need, go to the administration and ask for intervention. Before you go, send the professor an e-mail with the request.  Once you have the denial written down, take it to the administration and ask for intervention. That ends that. Remember it’s your right to have accommodations.
• Parents: let your kids make mistakes.
• Students: have a good time at college, don ‘t study all the time.  Don’t let parents affect your thinking so that you lose your perspective.  Make friends with those who have similar study patterns.
• In high school I was lost and only thought about girls.  In college I found my passion. Don’t worry about motivation, find the passion.
• Gap year is a good way to become re-invigorated.

*SAFE (Student Advisors for Education) is a student community that strives to educate, mentor,
and support students, parents and teachers regarding the challenges and strengths of LD and ADHD students.  This unique group of teens is passionate about learning differently, pursuing
their fullest potential and spreading awareness of their capacity for academic and life success.

This blog is written by Ann Farris, a dyslexic/hyperlexic.

In early December PEN (Parents Education Network) hosted two speakers from the Abbey Neuropsychology Clinic,  Richard D. Abbey, Ph.D., Clinical Neuropsychologist and Diana Barrett, Ph.D., Clinical Psychologist. Their focus  was three complex issues: Depression, Anxiety and Learning. I was impressed with the ease that these two specialists shared the podium as they imparted their expertise. A more detailed background on both speakers can be found at the conclusion of this blog.

They began their morning talk with a focus on depression, advising us that it appears differently with children and adults.   For a child, irritability is a key element.  They become very edgy and display a lack of interest in something that they previously very much enjoyed, walking away from any involvement with it or others. Whereas a tip the speakers provided to indicate whether an adolescent might be in a depressed state is sleeping till noon or complaining about a tummy ache. These are safer ways for an adolescent to express depression.  If there evolves a pre-occupation with poetry whose topic is life threatening, it could mean the adolescent is exploring the possibility.  The challenge for a parent is discovering whether the comments are simply anxiety which interferes with a child’s functioning or whether the issue comes from a depressed state.

Often depression comes when there is a problem with learning. This causes emotional issues. Ask yourself the question: are the emotional issues out of control?  Or is depression causing a learning problem? It is clear that when a child, adolescent or adult is depressed, this state interferes with other and important daily functions.

The frontal lobe of the brain is where Executive Functioning (ie: skill building) occurs. It can be one of the first segments of the brain affected by depression or anxiety. Kids who can’t keep information being taught in their mind are offering a good clue that this skill is not working well.  Perhaps the school teachers are unable to track the child’s reading skills which can result in their teaching approach not matching the way the child learns. When a student hears from a teacher: ”try a little harder”  or, “we just told you” when they are not doing what is being asked, more than likely the child/adolescent internalizes, “I am stupid.”  This can lead to depression.

There is another clue:  Is the student taking a long time to accomplish a task, especially if there is sequence of tasks to accomplish with the project. This inability can lead to the student getting caught up in right and wrong.  And, then they begin to say to themselves if I can’t do it perfectly I am not going to do it at all.  Their anxiety becomes dominant.

These are some questions the speakers provided to begin assessing whether your child/adolescent is experiencing anxiety or depression:

1. Is anything significantly different in any domain of your child’s life?

2. Is their day to day functioning different from the norm?

3. Does the child have a problem reading aloud. Do they lose their place, skipping
words or replacing words?

4. With Executive Functioning: is there a switching of letters and numbers? Can they sort out a lot of information being taught? does their attention keep varying?

5. Are you concerned that your child may not be safe?

There are solutions/interventions to these tell tale signs:  A few are listed below.

1. Professional emotional and learning assessments to diagnose what is happening with your child.

2. Cognitive Behavior Therapy. The process focuses on solving problems concerning dysfunctional emotions, behaviors and cognitions:  I looked up the word “cognitive” on Wikipedia for a definition. It refers to the following skills: attention, remembering, producing and understanding language, solving problems, and making decisions. The speakers had some good news about the effectiveness of Cognitive Behavior Therapy confirming that 75% of the time there is some kind of improvement with anxiety and depression.

3. Medications:  The speakers did not spend much time on this topic. They did comment that kids on medication do seem to have a working memory problem.  This is a controversial issue which has been discussed at PEN many times.  See former PEN and Emotion blogs within my various blogs for more information.

3. Reading interventions.  The speakers cautioned parents to undertake due diligence before taking action.  Some therapies only look at a part of the problem – which may or may not be appropriate for your child.  For an overview the speakers recommend using the National Reading Panel.  http://www.nationalreadingpanel.org.

4. Executive Functioning Coaching.  The need for this skill may not present itself until college level.  When it does, coaching is very important.  Each person needs to learn
how to plan, how to live with goal oriented behavior.

5. Software:  These speakers were promoting the use of a Pulse Pen.   It records what is being said and relieves the need for the listener to take notes.  They also mentioned the Intel Reader which was discussed in more detail in the previous PEN blog.

6. Cogmed:  This process helps improve working memory, expand attention and executive functioning.   http://www.cogmed.com/about-working-memory

7. What to do at home:  Adjust expectations of your child:  Set realistic goals. schedule free time along with time with you, the parent.  Have a listening ear, find a way to bring up the topic you want to discuss or to hear more about from them.

8 School:  School placement is very important.  See previous PEN blogs on this topic.

These speakers gave me a giggle when they said:  We have never spoken to a parent who didn’t think that they were right.  A part of me, Ann, who is writing this blog and is not a parent, sees that part of needing to be right in myself.  It takes time to undo that belief. If you, as parent are so challenged, give yourself time to learn more about the topic. Yes, I know sometimes that’s a difficult step for a parent to take. Our ego can make it difficult for us to accept there is a learning challenge. Your goal is to keep the best interests of the child to the fore. Here’s a sobering comment made by the speakers. There is evidence now that if one parent experiences depression, the risk for the child developing depression goes up. So, if you as parent experience the same issues as the child, the speakers said it helps the child if the parents also do the interventions.

The speakers urged the parents to go to gatherings, like EdRev in San Francisco, a yearly event produced by PEN which occurs at the Giant’s Baseball Park.  Here parents can intermingle with hundreds of other parents and learning specialists and Depression, ansietydiscover ways to increase their knowledge base on the issues facing their child.

Remember, the brain is neuroplastic, it can and does change!

______________________________________________________________________________

The speakers were:

Dr.Richard Abbey is a clinical neuropsychologist who specializes in assessment,  diagnosis, and treatment of ADHD, learning disorders, and other neurocognitive and emotional conditions. Prior to opening the Abbey Neuropsychology Clinic in Palo Alto, Dr. Abbey was a clinical faculty member at Stanford University School of Medicine/Lucille Packard Hospital. His areas of specialty include ADHD (and non-medication based interventions for ADHD), learning disorders, pediatric brain tumors, autism, and treatment of neurocognitive deficits.

Diana Marchetti Barret, Ph.D. is a clinical psychologist who assesses and diagnoses  learning disorders, developmental disorders (e.g. autism, aspergers), mood disorders, and ADHD. Dr. Barrett completed post-graduate work at the University of Utah Neuropsychiatric Institute and post doctorate training at Stanford University School of Medicine, Child and Adolescent Psychiatry. Dr. Barrett also has specialty training in Motivational Interviewing, Dialectical Behavior Therapy, non-medication treatment for ADHD, and Pivotal Response Training (PRT) for Autism Spectrum Disorders.

The speakers can be reached through:  Abbey NeuroPsychological Clinic located in Palo Alto, CA.  They offer ccomprehensive neuropsychological evaluations for infants, children, and adults.  http://www.abbeyneuropsychologyclinic.com

Ben Foss,  Executive Director of Disability Rights Advocates, was a recent guest lecturer at Parents Education Network in San Francisco.  This talk provided some advice for parents who are stymied by the  schools systems when they are being an advocate for their child and his or her  learning challenges.

Mr. Foss is a dyslexic, a fact that  was identified early in elementary school.  His parents were his advocates with the  result of him being placed in special education classes. His nonverbal,  picture-based intelligence was found to be in the superior range. His greatest  difficulty was written language. In middle school he was mainstreamed into  regular school classes where he was able to develop his strengths, all the  while hiding his dyslexia. Law School pushed him to the breaking point. He could no longer hide the fact that he was dyslexic. Thus began a journey of self-discovery that ultimately led him to become an activist in the field of disability rights.

Mr. Foss recommended five steps parents and their child can take with the school systems:

1.       Identify the issues.

It’s important to get a profile of your child. Engage your child and find out where their issues lie. Outline what are the approaches that give your child difficulties. Look for markers. Is the school too demanding for  your child?  Remember, your responsibility is to support your child, be your child’s advocate. State your goals  to solve this issue.

2.       Empower  the child

a.       Check to be sure the child wants to stay in the school.  Engage the child on the child’s terms asking them what they want.

b.       Sit with your child and teach them why a test is important.

c.       Describe to your child how their attitude affects how well they will do in school work.

d.       Teach them to stand up and be independent, speaking up for themselves.

e.       Explore all forms of technology with your child to see where there is a tool that makes the child independent.

3.       Know the law.

Early in your child’s education process find out the requirements for the SAT, the nation’s most  widely used college admission exam. While the date of that exam for your child may be ten years away, the  documentation that you keep will have a major impact on the conditions under which your child takes this test. The goal is to serve the child while not having to engage the law in the process. While it’s important to have the law the goal is to resolve the issue without having to use the law force. Mr. Foss recommends you consider the law a bodyguard that never does anything but looks menacing. And, remember:  document, document, document.

4.       Engage  the school.

Be an advocate for your child at the school. And, have your child learn how to advocate for themselves at school. Let them show the school administration and teachers that they want to become independent.

As a parent, advocate for the accommodations you feel your child needs . Remember, your child wants to keep up with fellow students.  That fact is very important to them. Accommodations can make that possible.

Mr. Foss described his story about creating a device which made him independent.  After Stanford Law School he joined Intel and created the Intel reader which takes text and reads it aloud.  Now he could access the written word much more easily. Mr. Foss commented that there are many similar products now available.  He said some   kids resist using this machine because of their concern that they are not learning in the same way as their classmates. The goal is to help them  see that they can learn faster with the technology.  Sometimes this helps them overcome the embarrassment of using the machine.

5.       Fine Tune your approach.

a. Remember: teachers don’t think about your child. Most just want the learning challenged kids to be sent to special education classes. This means the teacher will just have to deal with the ”regular” student.

b. Re-examine your strategy with your child.  Make sure it includes discovering how to help them overcome their internal monologue that tells them they are the black sheep.  If you ignore this behavior, it will stay with them.  Parents must make overcoming this attitude  part of your strategy with your child.

2.   Know the law.  There are two critical laws that protect students in  education.

“504″  – Section 504 of the Rehabilitation Act of 1973. This law prohibits discrimination in ANY program that receives federal funding.

• “504 Plan” It’s an individualizd assessment and plan.  This plan must reasonably accommodate your child’s specific learning disabilities so that
  his/her needs are met as adequately as the needs of students without
  disabilities. Examples of reasonable accommodations:

- Extended time, preferred seating in the front of the classroom, access to assistive technology.

• “IDEA”  Individuals with Disabilities Education Act.  This Federal law applies
  exclusively to education and provides special education to ensure that the
  students benefit from their education. There are stringent requirements: eg:
  the student must qualify under a “specific learning disability. Contained
  in IDEA is the IEP Plan, (individualized  education plan) which states the education must meet the needs of each student’s unique learning strategies.

Parents must request assessment for school evaluation in writing. The IEP  meeting is to involve the student, parents, administrators and teachers. The discussion will focus on:

1.  Present level of performance

2.  Goals and objectives for student

3. Services required to achieve goals

Measurements of success

Progress reports, Discussion of services (“placement”).
There is a strong presumption in the law that students should learn alongside the general education students.

Parents remember:  document, document, document.  Year after year be sure to have a folder with summaries of all the discussions and other pertinent information.  You will need it when the S.A.T. time comes to get accommodations for your child.

Should the above fail, here are some organizations to approach for help:

1. Disability Rights Education and Defense Fund:   In Northern California, 510
   644 2555.  iephelp@dredf.org
2. National Center for Learning Disabilities “IDEA”  parent guide. http://www.ncld.org/publications-a-more/parent-advocacy-guides/idea-parent-guide3
3.   Wrights Law: www.wrightslaw.com
4.   U.S. Department of Education – Office of Special Education and Rehabilitative Services.  http://idea.ed.gov
   note: this website, although thorough and accurate, is highly technical

The simulation gives the participants an opportunity to discover some of the challenges and frustrations faced by people with dyslexia. As a reminder, dyslexia is a language-based learning disability.  The International Dyslexia Association further defines it by stating the condition refers to a cluster of symptoms which result in people having difficulties with specific language skills, particularly reading.  Spelling, writing and pronouncing words can also be challenging.

Experience Dyslexia® provides an opportunity for non dyslexic-parents, teachers and others – to immerse themselves in the inner turmoil world of a dyslexic.  Six  learning stations each with a different focus give insight into the lives of individuals with dyslexia.  The participants were warned in advance that this simulation was created to be stressful and in some cases fatiguing and emotional. The intention is to offer a true experience of the challenges a dyslexic experiences with the goal of enabling the participants to become more empathetic with the dyslexic student or adult.

What follows is a brief summary of the focus on each station.

Station 1: Learn to Read simulated a beginning reading problem.  The participants were asked to associate visual symbols with sounds to identify words and comprehend the story.  I was the leader of this Station.  There was only one individual in the more than sixty who was able to master the process. At the conclusion participants in each group offered a short assessment of the experience.  They were amazed at how difficult reading was. Some of the words they used to describe the experience were frustration, fear, embarrassment and more.

Station 2: Listen to Me simulated an auditory figure-ground problem. Participants put on a head set and listened to a CD to discriminate between important auditory information (figure) and non-essential background “noise” (the ground) while filling out a worksheet.  For some dyslexics this noise becomes intensified and hearing almost impossible.

Station 3: Write with Mirrors simulated a visual-motor and writing problem. Participants are asked to trace and draw while viewing their work through a mirror.  This simulates the difficulty some students have with fine motor skills for handwriting and the frustration that can occur when students realize their written work is not up to par.

Station 4: Name That Letter simulated a letter-word identification problem. Several letters, r, b, d, g, p, q can be read in the reverse by dyslexics. Participants were asked to read a mirror image of a poor quality copy of a story discovering what it feels like when they have trouble learning to correctly name the letters and associate them with their correct sound.

Station 5: Write or Left simulated the experience of a copying and writing problem which is caused by the lack of automaticity in letter formation.  Clues that this issue is manifesting are slow and laborious writing and frequent self correction when writing. Participants were asked to complete tasks using their non-dominant hand.

Station 6: Hear and Spell simulates an auditory discrimination problem.  Participants are asked to spell a list of words which are dictated three times.  Each time there is a different voice distortion which makes it difficult to clearly hear the words.  This task simulates what it might be like to have a weakness in auditory processing.  For some people with dyslexia it is difficult to remember the number and sequences of sounds within a word.

By the end of the evening this group of parents, teachers and others were exhausted but grateful. Thankful they had some insight into a dyslexic’s challenges.  Nancy Redding, the host for the evening,  reminded us that no two people with dyslexia are alike.  And, she commented that dyslexics are often creative, intelligent with vision and hearing. It’s the areas of language where the dyslexic seems to struggle.

At the conclusion a few of the comments by the participants about the experience were:

• I understand students better
• I feel frustrated
• I am exhausted.
• I wanted the “teacher” to shut up
• I wanted to cheat and look at my neighbors paper

The Experience Dyslexia® — A Learning Disabilities  Simulation kit can be purchased.

The kit includes: Inventory of materials, facilitator’s introductory and final summary scripts, dyslexia fact sheets, individual station instructions, scripts, worksheets and two CDs.

Additional material that the purchaser would need to buy separately are mirrors, pencils, CD players, listening centers/headsets.  The cost of Experience Dyslexia® is $275 plus shipping.

The kit can be used repeatedly for teacher in-service trainings and parent education programs.  It might be a good investment for your school or organization.  Contact NCBIDA at http://www.dyslexia-ncbida.org/simworkshop.html.

Simulation Workshops:  Experience Dyslexia® — A Learning Disabilities Simulation can be presented by the NCBIDA to interested schools or organizations in the San Francisco Bay Area. This cost is $400 for groups of 30 – 60  participants.  Requests should be submitted 6 weeks in advance of your desired date.  Contact: www.dyslexia-ncbida.org/simulations.html.

Finally, a 2008 study from researchers at Southeastern Louisiana University (SLU) using materials from the NCBIDA simulation clearly showed that participation increased awareness of dyslexia among teachers-in-training. The simulation has been shown to be an effective teaching tool.

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In early October Parents Education Network sponsored a Saturday morning discussion on the process of choosing a Preschool or Kindergarten for a child who has special needs. The focus was FINDING THE RIGHT MATCH.

Two professionals working in San Francisco took the stage for the first half and four parents were highlighted during the latter part of the morning.  Both segments were chock a block full of advice.

Starting the morning off were:

Leslie Roffman, Director of The Little School in San Francisco. In her preschool, each year 15%  of the new class has special needs.  She refers to these children as “bumpy kids”. Ms. Roffman has written a book on the topic; Including One, Including All: A Guide to Relationship-Based Early Childhood Inclusion.

Fiona Zecca, MA has an extensive experience including handling special needs students at the San Francisco Unified School District. Currently, she is a consultant and offers Sensory Social Playgroups.

Their presentation began with an upbeat statement:  There exists a school for every child.  The caveat is that there is no perfect school.

Now, to their recommendations andcomments for parents:

1.       Come up with a sane plane for identifying a preschool or kindergarten.  One that includes your fondest hopes/dreams along with a realistic statement of what you would accept.  In other words, broaden your point of view.

2.       Be willing to see your child clearly.  Parents tend to overestimate their child’s
capabilities. Take time to imagine them in a school setting and assess what you feel is the best they will do along with the worst. Remember a school environment for a bumpy child is much more demanding than the home environment.  Ask yourself the question:  Does your child need a more supportive learning environment? Nothing is more exhausting for both parent and child if the child is simply trying to keep up in the learning environment.

3.      Research and experience has shown that the emotional state of parents impacts the child.

4.       The Little School is looking for parents who trust and support the school and are willing to be involved.

5.       Visiting potential schools:

a)  Make a list of the bumpy child’s strengths and challenges using the following categories to organize your thoughts: social, emotional, learning skills, sensory behavior, and physical challenges as well as attributes. One way to assess your child’s need, in part, is to watch how your child interacts at a birthday party.  Does he or she seek the stimulation or prefer to be quiet?

b) When visiting a potential Preschool use this check list and complete during your visit:

Environment: If your child is one that needs space, does the preschool offer this?  Is there a break area where the child can have his or her own space? Is the environment visually over loaded or very organized?  What variety of seats do they offer: comfortable chairs, carpeted floor, colorful balls etc.  What does your child respond best to?

Curriculum:  Find out what is the curriculum and see what it might mean to your child. If your child is stronger in learning than social interaction, perhaps you want an academic environment.

Structure:  how many transitions in a day are there?   Is there a warning to the youngsters before the transition?  Does your child need breaks? Ms.Roffman has found that bumpy kids usually are best in a consistent environment.

Philosophy of the school:   Is there an overall plan or is the process individualized?  Is it okay if the child fidgets?

Social/emotional curriculum: Is the school only academic or is there a social component?  Is it okay to have a learning difference? Is it okay to make a mistake?   What is the school’s approach to different learning styles? Do they adapt the curriculum to the learning style?

How does the school work with families?  Are they open to this?

Now comes crafting the plan for determining which preschool or elementary school to approach.  You need several options for your child.

1.       Pre-school:  if you have a child who is going to need more support, apply to more schools.

2.       Elementary: Elementary schools require screenings/interviews. If you apply to many of them be aware that this will put extra stress on your bumpy child.

With screenings the bumpy child is likely not to do his or her best. It’s etter to describe your child’s difficulties as well as their strong points in advance. Parents who reveal to the schools during the application process that their child has a learning challenge usually have a better relationship  with the schools than those who don’t reveal. Ms. Roffman stated that she has never seen an educator who pays more attention to reports than the screening. To prepare your child for the screening, in advance of the screening, go to the school with your child and play on the playground. Take pictures of the school and put them on your refrigerator.  When starting kindergarten, cut out all outside activities.

Be sure to have a mix of schools to approach including a) your neighborhood school (caveat: if you like it), b) school you think would be most supportive for your  child c) fondest hope and wish d) a school that’s better than your least favorite school.  And, if you have a bumpy kid, include a good number of public schools.

Research the San Francisco Unified School District website:            http://www.sfusd.edu/en/assets/sfusd-staff/programs/files/special-education/.

Finally, pre-school and elementary schools will accept bumpy kids within the limits of who they can teach. In other words, they take kids they can understand. They are more likely to take bumpy kids when they sense the parents will partner with them.

The second part of the morning involved four parents who have bumpy kids. The overall message was:  there is a lot of agony in the process but in the end the child seems to end up in the right place.  Have faith, it will work out.

The following are a few of their comments.

• Sometimes parents get so anxious over the process that it becomes anxiety for its own sake. It was strongly recommended that parents find networks of other parents who are going through the same process.  Learn from each other,  gather intelligence from each other.  Two organizations to approach are:

Parents for Public Schools:  www.ppssf.org

Support for Families:  www.supportforfamilies.org

Several of the parents discovered that the San Francisco Unified School System has a more inclusive and varied program for bumpy kids than private schools.  And, they are more accommodating to the parents points of view.  It is also financially much more attractive.Parents of kids enrolled in private schools may need to finance extra help for their child.  During the interview be sure to ask what special services the private school offers.

A couple of the parents recommended getting the child evaluated as soon as it appears the child is struggling. The SF Unified School System offers the testing process which provides an IEP, Individualized Education Program, for parents and others. The child must be 3 years or older to be tested. One parent approached the preschools with an IEP in hand. They got their 4th choice in public school.  It is working out well and they re-evaluate each year. The child is smart and intelligent but doesn’t deal well with transitions.  They find the educators are willing to hear from the parents and have the goal of their child being successful.

One parent recommended developing a script for approaching each school. She tried her script out at a Catholic School.  It included what she thought the school would discover challenging about her child and said she was willing to partner with them.

One parent re-iterated what the professionals had said earlier:  Make sure you know and see your child as he or she really is, not as you want them to be.  Be prepared that the teachers and educators may have a different idea of what is best for your child.  Don’t put your eggs all in one basket.  Apply to several public and private schools.

One parent describing the emotional journey recommended channeling the anxiety into the information gathering process. Support groups for parents are important.

Remember, check your ego at the door.  Apply to the schools that are the best for your child.

One parent summed it up.  Your choices are important but not irrevocable.  Your decisions are a work in progress.

The 2011/12 Parents Education Network lecture series in San Francisco began with a bang, a powerful bang.  The lecturer, Dr. Leyla M. Bologlu, shared advice that made my heart sing.  She underscored the importance of good, thorough evaluation for both ADHD and learning difficulties stating that the faster the parents take action the better.  It is now proven that early intervention can impact neurological change. The goal is to ensure that the child has a healthy psychological life as he or she goes through the challenges of the learning process.

Some clues: A child exhibiting behavioral issues is a flag that the problem could generate from  a brain-based neurological issue. (A dyslexic has different neurological pathways.)  Or a child exhibiting executive functioning shortcomings as a result of the brain’s inability to manage learning activities may be experiencing ADHD.

Dr. Bologlu gave a graphic description of the brain’s development. The infant brain is relatively smooth.  As the child grows and develops the complexity of bumps and squiggles on the brain increases from experience and exposure.  This description had me wondering how physically crisscrossed is my brain from my dyslexia and hyperlexia.  It wasn’t until I was in my forties when I learned i am dyslexic and in my sixties when I discovered that my real issue is hyperlexia meaning I had trouble in imaging words which are essential for reading and aural comprehension.

The lecture moved on to many types of specialists.  At the outset is the need for parents to identify a competent evaluator who is comfortable embracing specialists in several different fields with discreet skills to address particular shortcomings.   Dr. Bologlu reminded us that kids want to do well.  The adult team needs to discover what is holding them back, what skill set they are missing and sets in motion the steps necessary to improve the ability of the child to learn.

The path Dr. Bologlu recommends to identify the learning challenge includes.

1.       Obtaining a clear statement from the school with details of what seems to be going on/what are their concerns?  If it is you, the parent, who is recognizing there is an isuue, ask for a meeting at the school to check out your hunch.

2.       The next step is identifying a highly qualified educational therapist ( with a master’s degree) who knows and works with a battery of tests available and has experience with children of your child’s age. Tests include:

• Administration of cognitive tests  (not an IQ test)
• Academic achievement tests
• Other screenings/tests including but not limited to: Slingerland,  Levine,  language development/auditory processing, phonological awareness, visual-motor integration etc.

3.       Specialized testing includes:

• Speech & Language Evaluation (be sure the tester has at least an master’s level education)
• Occupational Therapy:  These evaluations and treatments are specific to motor
  development, sensory-motor integration and nonverbal weaknesses.
• Psycho-educational Evaluation:  Be sure the consultant has a PhD in clinical psychology.  The evaluations involve IQ testing, achievement tests, behavioral
  questionnaires, social/emotional testing.
• Psycho-educational Evaluation.  Be sure the consultant has a PhD in clinical psychology.  The evaluations involve IQ testing, achievement tests, behavioral questionnaires, social/emotional testing.
• Neurpsychological Evaluation.  This can include testing for intellectual skills  (IQ testing), as well as congnitive functioning ability which may involve testing for skills in a) language (expressive/receptive), b) visio-spatial/visio-perceptual function c) memory, d) attentional systems, e) executive functioning, f) fine and gross motor functioning, g) sensory integration and more.

The Educational Therapist oversees the testing process.  When she/he receives the assessments from other specialists, she/he draws conclusions and makes recommendations to the parents.  The Educational Therapist must provide the names of the suggested treatment providers – more than one for each type of service.  In addition, the Educational Therapist should make contact with all of the treatment providers recommended to outline the reason for the referral, the treatment focus and the number of sessions per week needed.

Additional appropriate support may include:

1. behavior support in the classroom and at home
2. sensory motor support – handwriting
3. executive functioning skill support (study skills, breaking down large assignments)
4. medication management.  I found it interesting that Dr. Bologhu’s point of view on medication is that it may help with behavior but not with the core issue.

At the conclusion of this lecture the President and Co-Foundter of PEN, Dewey Rosetti, when thanking Dr. Bologlu for her remarks commented:  If only we had had this kind of information ten years ago, what a difference it would have made!  I agree and am just grateful that teh PEN lucture series exists so parents now have the information to take reasoned steps with their child’s learning challenge.

Is a child who is not yet reading, but is very interested in letters, considered hyperlexic’?

Strictly speaking, these children are not hyperlexic because they are not reading. Some children who do not read at 2 or 3 years old may still develop reading decoding or sight-reading at 4 and 5 years old and may then be diagnosed with hyperlexia. Some children who are strong visual learners, though not readers may still benefit from the intervention techniques developed for children with hyperlexia.

Do children with hyperlexia understand
what they are reading? 

They understand what they read about as well as they understand language in general. Many children with hyperlexia have difficulty processing what people say to them. They may have a difficult time using language for thinking and reasoning. They also usually understand concrete language better than abstractions or inferences. Reading supports language learning because it makes the language visual. Therefore, language learning improves, and reading comprehension also improves.

What causes hyperlexia in children? 

The presence of hyperlexia within the context of another developmental disorder reflects a difference in the neurological organization of the brain. While a cause is not yet known, research in genetics and functional MRI studies may provide some information in the future.

Isn’t hyperlexia just a savant skill or a “splinter skill”?

 A savant (like having photographic memory, playing music perfectly after hearing it just once, or doing complex mathematical calculations in one’s head) or splinter skill is an isolated ability that appears within individuals with developmental disabilities. Generally, these skills have no relationship to other aspects of the individual’s functioning. Hyperlexia is not an isolated skill, but a tool which can be used to develop language, to modify behavior and to help the individual make sense of the world.

Does the presence of hyperlexia mean that the children are” higher functioning”?

In working with a large number of children with hyperlexia, we have seen a spectrum of outcomes. Some children, though they may be excellent readers, may exhibit severe and persistent symptoms of autism. Other children have great difficulties
developing verbal expressive language, though their written expressive language
may exceed their verbal abilities. Some children may do well academically, but
may have difficulties socially. It is hard to predict what a child with hyperlexia will be like as a young adult; however, we do know that using writing to supplement their learning leads to better progress.

Do children with hyperlexia get better? 

Children with hyperlexia do improve in language and social skills. Some individuals improve to the point that they are able to go to college or live independently, although some will need special education and supervised living arrangements throughout their lives.

Hyperlexic kids read precociously early but have poor comprehension skills. If you ask them to picture a frog, what they picture is F-R-O-G. They are all about the letters, having almost the opposite problem from that of dyslexics. If hyperlexic kids want to comprehend, which most dyslexics do just find, they need to become all about the pictures.

Gratefully, hyperlexic kids can often be helped by teaching them to visualize what they are reading. Most of us having a dynamic picture in mind as we read. If you aren’t too sure, think about the last time you saw a movie based on a book you have read. If you have ever said to yourself, “Oh, that’s just how I pictured that scene,” or “Noooo! That’s not how I pictured him at all,” then you are creating little movies while you read.

The reading intervention we are considering for Zach helps kids create pictures of what they are reading, and then helps them string those pictures together into an internal movie. I’m going to two days of training to learn how to do it, but it’s not until the end of the month. In the meantime, we have the ever-creative Wendy. She came up with the idea to have the boys use clay to make the scenes for a book they had written with her a couple of months ago.

This past Saturday, we printed the book, sculpted the scenes, and the boys and I took pictures of them. We did a few voiceovers on iMovie and, voila, we’ve got a digital book of sorts.

Enjoy the show: Two Hungry Species on YouTube

(If you notice Mommy’s voice on a couple of pages, it’s because it was dinner time when I decided to try to finish this project. My two hungry species revolted at the end, and they headed to the kitchen to kill someone’s babies if that’s what it took.)

Most parents whose children have a learning challenge look at me with a blank stare when I mention the term Hyperlexia. The same seems to be true with the professionals working in the learning disability field.

Why am I concerned you may ask. I am hyperlexic and I don’t want youngsters (or oldsters, as a matter of fact) to be mis-diagnosed or partially diagnosed as I was twenty years ago. It frequently happens.  When the tester or the learning disability specialist isn’t aware of hyperlexia they lump the child or adult into the dyslexic category. Why?  Both hyperlexia and dyslexia are conditions that affect reading.

Let’s review. Dyslexia means one has a hard time reading words, sounding them out and probably has a poor vocabulary. On the other hand, hyperlexia describes an individual who has difficulty comprehending what they are reading because the individual is not capable of imaging the words they are reading.

Here’s an example.  If someone says: the cat has a pink tail that wiggles, a hyperlexic sees the words but not the images of the cat. Imaging gets much more challenging with complex words.

I was diagnosed as dyslexic twenty-five years ago when in my forties. The testing office said there was nothing that could be done.  I began searching. I discovered quite quickly that I had mastered sounding out words, reading words, and knew I had an excellent vocabulary. It made me wonder.  Why am I a dyslexic?  No one had a response.  I decided that the problem was psychological and embarked on several years of inner exploration.  And, I was advised to remove refined sugar from my diet.  Both the psychological work and the elimination of refined sugar improved my condition some.

In my mid-sixties I attended a lecture given by Nanci Bell of Lindamood-Bell who described the differences between dyslexia and Hyperlexia.  I knew immediately that I was Hyperlexic. Yes, comprehension was my problem. Testing at Lindamood-Bell revealed I had Grade Three reading comprehension skills (and I graduated from the Yale University Drama School).

Parents:  here are some tricks that we, hyperlexics, use to mask our condition:

• When we are talking with another and we don’t understand what is being said we change the subject, or we ask questions hoping that we will get it.
• We talk in generalities.
• We don’t remember what we see or hear and get the person to describe the scene again.
• We use a word, phrase or sentence hoping we are close to what is being demanded.
• We take a long time to get a word.  I find people get impatient waiting for me to say what I know so I will jump in with a phrase praying I am close rather than waiting for the word to come.

Skills a hyperlexic has that makes expressing ourselves difficult for us:

• We are very good at FEELING the whole picture of what is going on in a situation. These feelings can be difficult to verbalize sometimes because:

1. We don’t safe in describing what we see.
2. There is so much jumbled in our brain and feel we must rush so we make up phrases.  e.g. “There are one too many few.”  This was a phrase I said to a waitress when a teenager meaning –  there are too many of us and too few chairs.  This strange way of expressing myself began happening frequently. My parent began calling them Annisms.

Once I discovered the accurate diagnose I took three steps.

1. I signed up for the verbalizing and visualizing training at Lindamood-Bell. http://www.lindamoodbell.com.  It was very difficult to learn how to image but I moved myself from Grade Three to Grade Nine reading comprehension level.
2. I worked with the Masgutova Method to correct my reflexes that were not functioning correctly. http://masgutovamethod.com. An individual’s reflexes are developed while in utero and during the first three years of life.  I discovered that twelve of mine were not operating at optimal level (e.g.) I was unable to crawl when lying on the floor – my left side reflexes did not work.  I decided to combine my emotional issues with the reflex corrections. It was an arduous process but my reflexes corrected over a year and a half.
3. Simultaneously I worked with a friend weekly on reading, utilizing the Lindamood-Bell techniques.  It was a painstaking process. Once my reflexes corrected themselves, my emotional behavior balanced itself and I became a more confident as a reader.  My friend was truly a saint.

In summary, comprehending what I read is still challenging. I have to be bold asking my friends to give me an image or images to describe a word they used when the meaning isn’t clear to me.

I hope my experience with Hyperlexia gives you some tools as you help your child or yourself with reading or aural comprehension. My wish is that the term Hyperlexia becomes a common phrase in the learning disability lexicon.  And, parents, when having your child tested be sure the testing officer is skilled in testing for hyperlexia.

For more information on my experience check out the article I wrote which is posted on this website.  http://dyslexiadiscovery.com/dyslexia-hyperlexia-and-beyond.