Ask The Expert: Is It Necessary To Test Again?

  • June 7, 2013 7:23 am

My son was tested 3 years ago and was diagnosed with a math disorder and now his school is asking for an updated full evaluation because next year we will be applying for high schools.  Why does he need to be tested every 3 years?  What does the full evaluation entail and can’t he just be tested for the math disorder?

Your child needs to be retested every three years in order to determine how the current recommendations and accommodations are meeting your child’s needs. It is hoped that the changes that were put in place based on the initial assessment have helped your child. As your child gets older and advances in their academic career, he or she might need changes to their accommodations. This may include receiving additional time when taking in-class tests or additional academic help with certain subjects. Also, as your child gets older, s/he will have a better ability to not only discuss their difficulties, but also to understand how their difficulties influence them, why they get special accommodations, etc.

The full evaluation will include academic and intellectual testing, which will help compare your child’s potential with how they are performing in the classroom. It will also include academic reports, input from parents, teachers, and your child, and other measures which are designed to better understand and evaluate your child.

Retesting just for the math disorder would not take into account other aspects of your child that may have changed over the past three years. It is likely that he or she will have different strengths and weaknesses. Also, depending on your child’s age, he or she can be more involved in the process and start to become their own best advocate. In addition, as children age, there are more tests available to better determine the specific issue(s) that are affecting your child.This will result in more thorough, complete, and accurate recommendations and accommodations.

Jason Arkin, PsyD

Capacity to Love

  • October 19, 2012 2:41 pm

Recently, the Pathways Institute facilitated some parent discussion groups at the Parent Education Network (PEN) September parent meeting. Instead of focusing on their children, the parents were asked to share their experiences and talk about what it has been like for them to raise a child with learning and/or attention differences.

The sharing was heartfelt, moving, and emotional. The Pathways Institute had contemplated offering a support group for parents of kids with learning and/or attention differences – where they could support each other as well as exchange information and experiences – and the meeting at PEN confirmed that such a group would be helpful and is much needed.  It was a challenge for most parents to talk about themselves versus their children, but as they did many teared-up and a few cried. It was clear by the end that most parents need support to deal with the guilt, helplessness, acceptance, overwhelm, sadness and grief. It was also clear how deeply these parents love and cherish their children.

As the parents spoke to each other, some themes emerged:

  1. 1.    Frustration
  • Many parents felt as if their children were trapped in an educational system that does not meet the need of so many children – that the methods of educating children were too rigid and too narrow.
  • Parents spoke about the painful reality that they had to give up certain things like family vacations because the child can’t be out of their structure and comfort zone without big meltdowns. For some families, that included not even being able to have family dinners together.
  • Many parents felt judged by family and friends about their “parenting” and how others don’t understand that some issues are not parenting issues, but are instead issues related to learning and/or attention (and therefore can’t be “fixed”).
  • Some parents turned anger and/or frustration on themselves.
  • Many people – teachers, therapists and other professionals – don’t understand what “slow processing speed” is, and thus it is very challenging to get the necessary accommodations for a child.
  • Parents expressed frustration about knowing something was wrong with their child and being dismissed/not listened to by others.
  • Many parents expressed frustration and disbelief that teachers and educators don’t even read the ISP or IEP, and that many are unwilling to accommodate the educational needs of their child.
  1. 2.    Overwhelm
  • Many parents expressed deep feelings of guilt that the demands of parenting an LD/ADHD kid is can be overwhelming. They thought they somehow should be able to do it without complaint or with ease.
  • For some parents, the stress of parenting kids with learning and/or attention differences had led to divorce.
  • Children with learning differences can have a much longer dependence on the parents, which can be very draining over the long term.
  • Several parents asked how do we “build a community of understanding friends or friends with the same parenting challenges”? They reported feeling isolated and alone in their struggles and challenges.
  • Sometimes a child’s learning and/or attention differences can mirror that of a parent’s, which can make it doubly challenging.
  • Knowing the difference between respecting a child’s difficulty versus allowing the child to slack-off when they could be doing more is confusing.
  • Parenting a child with learning and/or attention differences can be exhausting. Many parents reported feeling some envy for other parents who they perceive as having it easier than themselves.
  • Parents reported that it is difficult to take care of themselves in the face of taking care of a child with a learning and/or attention difference.
  1. 3.    Acceptance
  • Many parents struggled with denial about their child’s learning and/or attention differences. In some families, one parent continued to be in denial while the other struggled alone to help the child. At times parents differed about what interventions should be taken. Sometimes the kids moved in and out of denial.
  • Sometimes a child’s challenge mirrors that of a parent’s, so they need to move into acceptance together.
  • Some parents felt it was important to accept “simple” interventions, such as the importance of exercise in order to help kids integrate especially before homework.
  • In the process of wanting to do everything they can for their child, parents at times feel they are doing too much. There is work in figuring out the balance between protecting/caretaking and leaving the child to his or her own devices in a healthy way.
  • Some parents discussed going to a group on codependency to help them learn about it and work on it with their children.

Some parents felt tremendous relief over receiving a diagnosis for their child. They felt deeply validated about their own experience and that they were given a language for their experience (and their child’s experience) and struggles. Some parents felt tremendous loss when their child was diagnosed. They felt a loss of the fantasy of who their child might be and what they hoped their parenting experience would be.  That said, many parents felt that there were immense gifts they received through parenting a child with learning and/or attention differences. They spoke of the ways their children were creative, bright, and even gifted. They spoke of how they had gained the ability to accept others for who they are, and grown in their capacity to love.

The Pathways Institute provides psychoeducational testing, consultation, and reports with understandable explanations for parents and teachers, and second opinions on school-based testing. We help parents navigate the next steps of diagnosis, intervention, and remediation, and offer therapy to support parents through the complex experience of raising a child with learning and/or attention differences. We also offer groups for kids and teens, helping them to build resiliency, understand how they learn, and how to advocate for themselves. For more information contact the Pathways Institute assessment program (click link).

The Right of Every Child

  • May 7, 2012 10:50 am

Recently, in anticipation of National Child’s Mental Health Awareness Week, the Directors of Pathways Institute interviewed a colleague who has a daughter with learning and attention differences.  Pathways Institute works therapeutically with people who have learning and attention differences and their families, and helps them to navigate the system to get services.

When did you notice your daughter’s learning differences? 

I was lucky: when my daughter was quite young – a little over one year old – I noticed she didn’t have hand dominance.  I remembered reading an article about hand dominance as a possible early indicator of learning disabilities while I was in graduate school.  At that point I started to pay closer attention to the how she was developing.

What happened next?

In preschool they did a “ready for kindergarten” screening and the occupational therapist conducting the screening noticed a couple of things.  She noticed the lack of hand dominance and the inability to cross the midline, meaning she would start drawing on the left side of the paper with her left hand get to the middle and switch to her right hand.  She alerted us that we might want to have her assessed.  We set that up and discovered a couple of things that surprised us: our daughter had weak core strength and no hand dominance.  The recommendation was she do occupational therapy.  We started it and it was helpful.  She spent two years in OT and at the end was able to cross the midline and the OT felt she chose to be right handed.  At this point she is still quite ambidextrous.

How did she do when she started kindergarten?

This was the beginning of a very difficult time for her and us.  She had a great deal of difficulty learning to write her letters and she was already identified as a child that was unable to pick up the first pieces of reading.  It was recommended to us she do some afterschool work with her kindergarten teacher on phonics.  We signed her up and she did two rounds of 6 weeks.  At the end very little progress was made and when we asked the teacher, who had a masters level degree as a reading specialist, if she thought we were dealing with dyslexia, she wouldn’t answer the question.  I learned later that she wasn’t allowed by the school district to answer.  This will remain forever immoral and unconscionable to me.  Here we had a child who needed help and they refused to tell us, for political reasons.  But in spite of this lack of information, I knew that learning disabilities are genetic, and I have a sister who is dyslexic, so I was now “on the case,” so to speak.

Was the school supportive?

We had to push and push for testing, and finally at the end of second grade she was tested.  But she still somehow managed to fall in the low, low averages which would not qualify her as learning disabled.  The testing showed just a couple areas of significant deficit: in particular, she scored at 2% for short term visual memory processing.  Because she was strong in other areas, she didn’t qualify.

There is an undeniable conflict of interest if the same institutions that have to provide the services are doing the testing.  I know most parents with dyslexic kids are shocked to discover – and the generable public should also know – that the acceptable averages to qualify as learning disabled are so low that kids have to be several grades behind in school before they qualify for services in California.  And even then some don’t.  My kid didn’t.  Most kids that fall that far behind experience depression and anxiety.  This should be unacceptable and people should be outraged.  In essence we didn’t get anywhere with the school district, we had incredible problems trying to get help for our daughter, but that’s a story for another day.  Suffice it to say that sadly schools and educational administrators don’t appear to be interested in why a child isn’t learning.  This should be the mission and mandate of special education, not “does a child simply qualify.”  It is a broken system where everyone ends up demoralized.

What was it like for you to be denied services for your daughter?

Traumatic.  My wife and I were incredibly confused, distraught and angry.  We really didn’t know where to turn or what to do.  And we were both well-educated professionals.   We couldn’t understand why no one seemed to want to talk to us or how could it be that all these education professionals, who must have evaluated hundreds of kids, were acting like they didn’t have clue?  Our daughter’s principle told us, “Why don’t you take her to one of the private schools that specialize in learning disabilities?”  It is hard to know if she was asking us to leave or telling us she couldn’t help or both.

Luckily we had a friend who told us about an amazing organization: Parents Education Network (PEN).  We were introduced to several PEN members, and talking with them was like walking out into the sunlight after being in the dark for years.  They told us to stop talking to parents of kids without learning disorders, stop talking to educators who don’t care or aren’t interested or able to think about your child, and surround yourselves with supportive friends, family and the parents of LD kids who are a few steps ahead, join PEN and get more information and education.  Finally, they said be prepared to sacrifice and invest in your child.  We were lucky that it was possible for us. It isn’t for most people and that is one of the great educational crimes of our time.  PEN saved our sanity and in ways ultimately our family.

What was it like for your daughter?

It’s very painful to recall.  During her K-3 years in school she just went down, down, down emotionally.  Every day she went to school and was frustrated and failing in making the kind of progress her peers were making.  She was a good kid and so she never acted-out in school, although some kids do.  But at home she was angry and in a dark place.  She hated school and didn’t want to be there but went anyway.  She was an incredible trooper as we were intervening with reading specialists and math tutors.  She’d go to school all day and then 4 days a week go to tutoring; she was exhausted.  She was sad.  She wasn’t well received socially; she did have a few friends but I think because she was so insecure and frankly exhausted she could be controlling and inflexible.  It was hard on her friends and hard on her.  Her insecurity stemmed from living in body with neurophysiology that was failing her in school.  I think she was riddled with fear and quite anxious.

What help and treatment did you seek?

We went to a very wise child psychologist, who told us to get her out the school, change her environment and put her in a school that specialized teaching kids who are dyslexic.  He told us this wasn’t a parenting problem – we had been told it was a parenting problem at different points by school administrators and unkind people who saw an unhappy kid and blamed us, the parents. He recommended we get her neuropsychological testing which was informative and verified what we knew in our gut: that our daughter had learning and attention disorders, although they failed to give her a diagnosis of dyslexia.  Once she was at the new school with experts they all said, “Your kid is dyslexic”.  As an aside, we were so glad to learn that finally, in the upcoming DSM-V, dyslexia will be included with an understandable and researched-based criteria.  You have no idea how relieving this will be for us and millions of parents and kids who are dyslexic.  An actual criteria worked on by the Shaywitzs, the leading researchers and experts in the field.

Did you feel relief after the neuropsychological evaluation and diagnosis? 

Recently, I saw a clip of an interview with James Redford about his new movie, The D Word.  It is about his son’s journey with dyslexia.  He was asked the same thing.  His answer was something like, “No I wasn’t relieved once there was a diagnosis, my son was functionally illiterate and I was still caught in the fear of wondering how this kid is going to make it in life.”  I nearly broke down in tears when I heard that clip – another parent, a father, that really understands.  I wasn’t relieved either.  I didn’t know how my daughter was going to do.  Would she ever get to a place of acceptance, would she learn to read, would she have the chance to go to college?  Would she plateau at a very low level, would she ever feel secure?  A child’s world and job is school, and when they start out failing the psychological impact is huge.  I knew that kids with LD and ADHD are at high risk for dropping out of school, drugs and other impulse disorders.  I wasn’t relieved I was still terrified.

You have seen a change in your daughter over the past few years.  What’s different now since she has been at the school these last 4 years?

My sister is a psychoanalystand I remember talking to her about my daughter when my daughter was about 7-years-old.  She said, “You know, some day she will need to tell you what is was really like for her.”  I was puzzled, I didn’t really get it because I thought I knew what it was like since I has been through it with her.  My sister said, “She will need to tell you how painful it has been and likely how angry she has been at you, because she is dyslexic and in that way different from you and Lori (my wife).  You and Lori didn’t struggle in school and you don’t struggle with learning now.”  At that time, my daughter would just express anger and shut-down, she never was able to talk about what was happening.  She was obviously young so I couldn’t expect it but was this ever going to happen, this kind of conversation with my daughter?

Even after going to the new school my daughter struggled at first – she saw it as a school for losers.  She was projecting her own insecurity and lack of acceptance on the school and kids.  Gratefully, we were referred to a truly gifted child psychologist who worked with her.  This psychologist really understands LD kids and is so incredibly patient, sensitive to and interested in their amazing minds.  She has helped my daughter accept being dyslexic.  It wasn’t quick, and it wasn’t cheap, but the therapy and the education has been worth every penny, miles of carpool, and thousands of hours of time.

I always hoped the day would come as my sister suggested it might, that my daughter would be able to say to me and my wife the truth about her experience.  That day came about a month ago.  It happened when my daughter was having a brown out (unable to recall from memory knowledge she had the day before) and struggling with homework.  She was tired and frustrated and then just began to weep.  She said to me, “You don’t understand what it’s like.  I have to work so hard and sometimes I just can’t remember or find things in my mind.  And you aren’t dyslexic.  You and mom never have these kinds of problems and you’ll never know what it is like.”  I knew then that she had really begun to develop a place of deep acceptance of herself and that she could now tell me what was so painful, that things were easier for me, that she was different than her mom and me.  It was a deep expression of psychological security and healing.

I still get anxious – currently I worry about next steps as we begin to look at high schools – but I am not as scared.  And when I can sit back and just see what she has accomplished I am filled with the deepest respect and love for her.  I have to keep working on having faith so my own fears don’t get in her way.  I now believe that she is going to have an amazing future.  She is the strongest person I have ever known.

How does your daughter feel about herself today?

Well you’d really have to ask her.  What I see is that my daughter is learning, she values her unique out-of-the-box thinking mind, she wants to be a scientist, she has learned to be quite flexible, and has a full social life of friends.  She is able to laugh and recently just happened to say how she doesn’t feel angry any more.  We owe a great debt to all those who have supported her and us.  Both my wife and I feel that educational advocacy for this population of people will be our life’s work.  Every child and family should have this kind of success, whether they have money or not.  It is the right of every child to learn and grow to their fullest potential.

Helping kids make better choices (about drinking)

  • March 19, 2011 1:31 pm

Parents with tweens or teens often wonder how to effectively parent their children so that the kids can make sound decisions even when their parents are not around, including decisions about drugs and alcohol.

A recent study in the Journal of Studies on Alcohol and Drugs has confirmed that parenting style, in fact, does have an influence on their child’s impulsiveness, including control over their drinking, and the possibility of alcohol problems.  Julie Patock-Peckham, Ph.D., and colleagues broke parenting styles into three categories: authoritarian (emphasis on rules and obedience and lack of discussion), authoritative (clear rules and instructions but open to discussion), and permissive (behaving more like a friend than a parent).  Of these three groups, the authoritative parents were most likely to do a better job of monitoring their child’s social life and plans, and these kids were the least likely to act impulsively and have problems with alcohol.

The most surprising aspect of the study was the discovery that parental gender also plays a factor – and that it is the opposite gender that plays the bigger role. In other words, girls with authoritative fathers displayed fewer impulsive symptoms including alcohol-related problems; similarly boys with authoritative mothers displayed more self-control.  Conversely, kids whose opposite-gendered parents were perceived as permissive were linked to more impulsivity and alcohol-related problems.  The authoritarian parenting style did not serve to gain the parents access to monitoring their child’s life and therefore did not give them an advantage in that way.

The reason for the gender significance is not yet understood, but it certainly underlines the importance of a parent’s gender in unexpected ways.  Opposite-gendered parents can feel at a loss, at times, on how to parent the unfamiliar, especially as a child moves into puberty.  It turns out that parent’s role is not diminished, and instead plays a crucial role in their child’s continuing development.  It is crucial for the opposite-gendered parent to be clear about the rules and expectations for their child, but to also cultivate an atmosphere where the child feels comfortable talking things over with the parent and sharing with them what is happening in that child’s life.

Samantha Smithstein, Psy.D.

Sometimes what you need is hard to swallow

  • December 14, 2010 2:02 pm

Frequently when a therapist suggests that his or her patient might be helped by psychotropic medication the suggestion is met with concern, doubt, or even anger. This is even the case when a patient has been suffering for years from mood, impulse, or attention-related issues. Additionally, often patients try medication, experience relief, and then decide abruptly to stop taking medication without consultation with their therapist and psychiatrist; often while simultaneously self-medicating with illegal drugs, alcohol, or unhealthy behaviors. This can be especially true during the holidays, when the pressure to be happy is intense, the feelings of depression are frequent, and the availability of unhealthy behaviors is high.

No doubt prescribed psychiatric medication is not a perfect science: there are side-effects and sadly medication doesn’t always work and provide the relief of symptoms and quality of life improvement sought by the patient. However, all too often side effects and/or the efficacy of the medication are not the reasons people stop taking helpful medication. Instead, the reason expressed is more likely to be “I just don’t want to be on medication (for the rest of my life).” Why?

Unfortunately, in large part this is because there remains serious stigma, shame and fear of psychiatric medication and psychological treatment. According to NARSAD, the Mental Health Research Association, one in five Americans suffer from mental illness in a given year but only one-third seek treatment. In San Francisco it is estimated that close to ten percent of the population suffers from a serious mental illness. In a recent study, psychiatry residents – those doctors learning to help people with mental illness – acknowledged that while they would tell others about being in psychotherapy, they had not admitted to anyone that they were taking psychotropic medication because of the perceived stigma even amongst their peers and superiors. In a study earlier this year, it was found that even the drug companies that market psychotropic medications to doctors were perpetuating rather than breaking-down the stigma attached to mental health problems.

Of course, the ads from the medication companies and fears of the psychiatry residents are simply a reflection of the societal stigma that still exists. And yet medications have given so many people a chance at living a happier, more fulfilled life. Rather than a weakness, character flaw, or sign of a mental deficiency, a psychiatric condition is a medical condition that needs to be treated. Without a doubt, there are many ways to approach psychological problems without medication. This can range from psychotherapy, to meditation and/or yoga, to exercise, to lifestyle interventions, or some combination these interventions. But in some cases, just as with any medical issue, medication can make a tremendous difference. For example, medication can make a profound change in a patient who has been in psychotherapy for years and has made tremendous progress psychologically, emotionally, and in making healthy lifestyle choices, but remains unable to shake a pervasive negativity about herself that makes it very difficult for her to achieve satisfying, intimate relationships. Once on a low dose of anti-depressants, she may find that the negativity has lifted and she is much more healthy psychologically and capable of relationships than she imagined.

Part of the resistance to medication is due to a societal backlash. Pharmaceutical companies make a profit from selling medication and our culture has a tendency to look for the easy answer to problems, sometimes in a pill. Many have turned to medication inappropriately – over-medicating our children or those struggling with mental illness. It has become clear through these experiences and in research that medication is not always the answer and most often not enough as a solution. However, it is also clear that in some cases medication is one tool in the toolbox of interventions that can make a tremendous difference.

Samantha Smithstein, Psy.D. and Elizabeth Corsale, MA, MFT

Important new study on dyslexia and IQ

  • January 14, 2010 5:10 pm

How often have you felt your dyslexic child is incredibly bright even though they have been floundering or failing in school? How often have you felt confused, frustrated, sad and wished someone could explain to you why your son who understands the big bang theory ad nauseam can’t remember the word “the?”

Gratefully, there is a new study defining dyslexia, which was conducted by Dr. Sally E. Shaywitz of the Yale Center for Dyslexia and Creativity.  It was a 12-year study, which followed typical learners and dyslexic students. The study found that unlike typical readers where reading and IQ track and influence each other, IQ and reading are not linked in dyslexic student’s brains.

Dr. Shaywitz also states that, “Typical readers learn how to associate letters with a specific sound. “All they have to do is look at the letters and it’s automatic…It’s like breathing; you don’t have to tell your lungs to take in air. In dyslexia, this process remains manual.” In other words dyslexic kids who are able to read are doing so because of learning strategies such as reading slowly, using place markers or using their finger to track the words as they read, rather than simply remembering the sound.

In other words, when typical learners see the word “the,” we recognize it because it’s alive and kicking in the language processing memory part of our brains.   But when someone with dyslexia sees the word “the,” he or she is seeing it for the first time! S/he has to decode the word in order to read it each and every time.

We can (and should) all contemplate all the new questions that are associated with this study.  For example, if reading doesn’t influence a dyslexic child’s IQ, what does?  Regardless, what we are left with is the importance of knowing that not being able to read well is not the same as not being intelligent.  And an incredible feeling of amazement that these children continue to want to learn despite the significant learning disability inherent in dyslexia.

Elizabeth Corsale, M.A., MFT

Get Adobe Flash player