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Letting Go and Being Okay

For our Pathways Institute Ask the Expert blog, we asked parents for their stories, with the idea that it would be helpful for parents to hear from other parents about their struggles and transformations. We asked: What has this journey of parenting kids with learning differences meant to you? How has it transformed you? This is the response from one of our parents. She requested to remain anonymous out of respect for her children.

I grew up in an alcoholic family system where there was one crisis after another. In-between there was a fair amount of numbness and once in a while good times.  I spent time in therapy, at first trying to get control of my own self-destructiveness, then surrendering to the reality of needing help. I learned to be able to deeply think, wonder and take the time that I needed to understand myself. I was challenged to understand that drama, and emotional upset were different from being present and being in real contact with myself.  I learned to meditate and continue to do so daily –  I highly recommend it.

When I turned 30,  I was no longer terrified of intimacy. I got married and by 32 had a daughter and a son. I couldn’t have asked for more, I was truly happy and felt on the right path for life.

Then, when my son was young, he was diagnosed with dyslexia.  I was told he should go to a school that specialized teaching dyslexic boys. This was hard to hear but thankfully the school was in the same town we lived!  I told myself, “this dyslexia thing is just a little hiccup. Things will be fine.” I thought my son would beat this thing called dyslexia and perhaps be the next Steve Jobs, Charles Schwab or Sir Richard Branson.

During my son’s first year in the special school, my mother was diagnosed stage 3 breast cancer while caring for my father who was in the late stages of  ALS.  I believed I would be fine and I could handle all of it.  But I just couldn’t. My family was fractured and I felt completely out of control about everything and kept wanting to scream:  “WHY ISN’T ANYONE LISTENING TO ME AND LETTING ME BE IN CONTROL?”  Somehow, in the middle of all it all and in a moment of grace, I was reminded of Al Anon something I had done before and I went to a meeting.

It took a while for me to get clear-headed in Al Anon and watch my self-righteousness cool down, soften and  slowly peel away by listening to the wisdom, generosity of spirit and great humor of the group members.  I started to realize I needed to surrender the “people, places, and things” I couldn’t control, and a shift happened: things greatly improved for me with my siblings and parents.

But as things got better with my family, I realized I was not done with my work in Al Anon. I was still in a battle of wills: my will versus reality regarding my son and dyslexia. I realized I needed to stay in Al Anon years after the family crisis had abated because I was treating dyslexia like alcoholism and my son as if he were an alcoholic.  I was trying be in control an uncontrollable situation.

My son  was making progress in school but it was slow and no one was telling me he was going to be the next Steve Jobs.  The experts were saying that he was struggling to accept his learning difference, which is why he is so angry and anxious all the time.  He needed therapy, additional tutoring and massive amounts of patience from his parents.  I wasn’t very good at patience; I would get upset, angry and anxious.  I would try to force solutions.

There were times when my son behaved like a PTSD survivor.  He would be given an assignment in math and by the time he got home he couldn’t remember how to do the problems.  He would descend into anger, escalate, perseverate and explode in rage, because his brain was having  a brown-out and sometimes a full black-out.  I would  panic and think, “I have to do more of this and more of that, find people who can help him.” I would email the teacher, upsetting my son and creating serious problems in my relationship with him.

Gratefully, in Al Anon I learned to not talk to the dyslexic kid when the dyslexic kid is doing homework.  I learned to  breathe, walk away, and stay calmly,  “I’m sorry homework is so hard for you.”  I have learned to calm down because there  is nothing I can “do” and more importantly I now have faith that my son is okay and going to be okay even in the middle of his struggle. Our son has the help he needs, is allowed to appropriately express his feelings and thoughts about how hard having dyslexia is at times, and is loved no matter what.  I have begun to understand that I can never protect both my child from the suffering and struggles that come with life, including this one.

I am also now learning that I need to come to terms with being OKAY even if others in my life are struggling or suffering.  Being okay doesn’t mean I am uncaring about another’s struggles , in fact there are times that I am involved in trying sort out my son’s learning problems and participate in the process supporting or  finding a solution. It just means that I don’t have to join the suffering.

The 11th step in Al Anon is “Sought through prayer and meditation to improve our conscious contact with God as we understood Him, praying only for knowledge of His will for us and the power to carry that out.” Meditation has given me an important coping and resiliency tool, and where I have learned about and practice detachment. Detachment isn’t disconnection or disinterest.  Detachment is the ability to say to myself, “Let go. There is nothing to carry, nothing to become distraught about.”

I use to think that I wasn’t allowed or entitled to experience real joy, freedom or happiness if others and in particular if my son was struggling.  What kind of parent would have a good day while their kid was struggling with reading?   I would sink into GUILT.  But I now realize not only am I allowed to be free of guilt and experience the good stuff in life, my son who struggles with learning needs to see that I  am okay.  In fact he deserve to see that I am not taking on his learning struggles psychologically and emotionally.  He needs to experience me creating positive interactions with him.  Otherwise, if I’m an anxious mess, a negative downward cycle begins to corrode our relationship – we are on a sinking ship together.  When I keep a sense of humor and my deep sense of gratitude, and keep moving forward, it gives him the feeling that he’s just a teenager and I’m just his mom, and everything will be okay. It gives him hope, and the balance we both need.

Yeah Right: The Day to Day Reality of Life with a LD

I recently sat down for coffee with a parent of a teenager with learning disabilities.  She told me her daughter has the “kitchen sink” when it comes to LD.  She went on to say that her daughter has a reading disability and an unusual ADHD presentation. Unusual I asked?  She said, “My daughter had been diagnosed fairly young with ADHD but several neuro-psychologists and psychiatrists still feel it’s not quite accurate”, she sighed, “even the experts are confused.“ Her daughter has short term memory deficits, extremely slow processing speed but her working memory is okay and her long term memory is superior.   Her daughter was transferred in second grade to a school that specializes in teaching kids with dyslexia and attention issues.  “This was the best decision we ever made. The school emphasized helping kids develop resiliency through acceptance of their LD, encouragement and building on their strengths.”  I thought it sounded like this family had a great outcome to a challenging set of problems.

 

Last week I was able to talk to her daughter, a high school sophomore and ask her about her experience and what it was like to have a learning difference.  “I hate having a learning disabilities because it make learning hard and sometimes I still worry about getting through high school and college.” You can imagine my surprise as I had preconceived ideas that she would talk about how great things are now.   She said that going to the  K-8 school was probably the best thing that happened but then she relayed a recent story.  She said that she was telling her current favorite English teacher about her K-8 school and how the teachers at that school always said that dyslexia was gift.  She lit up with laughter while telling me that her current teacher responded, “Yeah right”!  I asked her why that made her light up?  She told me that she understood why the school and teachers talked to the little kids about their “gifts”.  She remembered wanting to give up when she was in third grade and that positive message helped her to keep going and trying, but she said it wasn’t the whole story.  She felt it was important that teachers don’t sugar coat the challenges of having LD and they needed try harder to understand LD kids and be real with the older kids with LD.  She said that gifts came from dyslexia but dyslexia itself wasn’t a gift, it made learning so hard and still even now many teachers don’t understand and care about how hard it is for her to learn.  She told me,  “Many teachers seem clueless about what it’s like to have short term memory problems and how hard I have to work, repeat, repeat repeat, repeat, repeat, repeat and repeat to get things into my brain.”  After she shared all of this, I could only imagine how relieving it was for her to have her favorite teacher get it and her with that exclamation of yeah right.

 

This made me think about how important it is for all of us to remember and appreciate that all  kids have an inner psychological and emotional world.  Therefore it is essential that we support, accept, work with, appropriately and accurately accommodate kids with LD and their families in the reality of what it is really like day to day living with learning disabilities.  If we only focus on the negative such as neurological deficits then we will miss the blessings and gifts;  but likewise, if we only look for the positive such as strengths, then we will miss the challenges and even the suffering of the individual.  We have to have balanced approach and become interested in the whole child and the entire experience of what their life is like as they navigate learning and living with a learning disability.

Elizabeth Corsale, MA, MFT

Ask the Expert: Why Was My Son Referred for Psychological Testing?

My son was referred for psychological testing? Does this mean there is something wrong with him?

First off, there are many reasons why your son may need psychological testing. A child can be referred for testing because he or she is having interpersonal difficulties, be depressed, not be able to sustain attention in class, or have trouble with academics as a result of a learning issue.

It may be the case that your son is struggling with a kind of internal turmoil that psychological testing can help to clarify. While there might not be a severe problem with him currently, getting psychological testing can help ensure that he gets the help he needs so that future difficulties can be minimized. Good psychological testing should include highlighting strengths, clarifying difficulties, and increasing self-advocacy.

While it can be a difficult and potentially expensive process, it is important to be aware that the overall goal of testing is to provide preventative and proactive support. This does not guarantee that your son will not experience difficulties, but it can help to minimize academic, biological, and emotional barriers for the time being and even for the long run.

There are other types of testing that may be relevant to your son. If it seems as though an academic issue is the root cause of their emotional distress (i.e., difficulty with schoolwork, leading your son to have negative self-talk that results in depressive symptoms), academic testing may be recommended. If the testing reveals that your child has a learning or attention difference, early intervention can help to alleviate some of the emotional turmoil your son may be experiencing. It is also extremely helpful to have early diagnosis and intervention documented for later when they are needing additional accommodations such as more time on standardized testing.

Regardless of the type of testing, be it psychological or academic, the goal of testing is to understand your son better, and to provide recommendations and strategies to help him flourish and succeed.

Jason Arkin, PsyD

The Myth of the Average

The following is an interview Todd Rose, faculty member at the Harvard Graduate School of Education, author of Square Peg, and co-founder of Project Variability. In his recent Sonoma TedX talk “Ban the Average he explains the myth of the average and how it harms kids in the education system by depriving them of learning, and our society as a whole, robbing us of needed talent and creativity.

We found his work to be highly relevant to the work we do at Pathways Institute, where it is part of our stated mission to help all children “function at their highest level and bring their unique gifts to the world.” We began the interview by asking him about the Myth of the Average:

 

L. TODD ROSE:  The Myth of Average is a belief that’s been prominent in most sciences and in education. It’s the belief that we can use statistical averages to understand individuals. Scientists have come to realize that it’s a myth, and over the last 10 years have been moving from averages to individuals, so for example we’re hearing a lot of things like ‘personalized medicine.’  Unfortunately, education has not quite realized the myth yet, and so what we have is a situation where not only do we accept the idea of designing something for the individual based on the average, we actually promote it.  The myth is that the average is fits for most people, when, in fact, it doesn’t.

Interviewer:  And how does that hurt us?

L. TODD ROSE:  When it comes to designing environments it hurts us in two ways.  As I said in my TEDX talk, the first is that you can be incredibly talented in one area, but average or below average in another. For example, say you’re really gifted in math, but you are an average or below average reader. The way our education system is designed will make it very hard for us to be able to get at your talent, because even in math class many of the problems are reading problems, so the reading problem can mask what you’re really good at.

The second way it hurts us is that someone can be unbelievably gifted in something, but their environment won’t challenge them because it’s teaching to the average. They end up getting on-board and doing only what they are supposed to. In this way, designing environments to averages end up hurting even our best and brightest.

Interviewer:  So how does that play itself out in our everyday world?  How are these problems going to effect all of us, even if they don’t harm us personally?

L. TODD ROSE:  Good question.  To me, the effect of the Myth of the Averages is even broader than education.  It’s really about how we develop our current and future talent pool, and as you know we have big challenges in our society and need all of the talent and creativity we can get.

We already have all the raw talent that we need! If you think about something as big as finding a cure for cancer, we need as many people who have the talent and the work ethic becoming scientists and chasing down this problem as possible.  But if we design our educational environment so that an individual’s limitations make it almost impossible for us to get to their talents, then we are going to lose a whole bunch of talented individuals, and in my mind we’re in danger of losing the cure for cancer.  If we extend this myth of averages all the way it has very serious implications, because when we studied cancer on the average, it led us to conclusions that were not helping us actually cure people.  And since we’ve gone away from average and started studying cancer, individual cancer, we’ve made great progress.

The workforce environment is not dissimilar. We’re trying to get people to be the most productive and effective person they can be. But if the environment is designed around averages, it makes people less efficient, less creative. So, you know, in every sector of society this idea of average has turned out to be a sort of barrier to advancement.

Interviewer: I see.  And so what does Ban the Average mean?

L. TODD ROSE:  Well, to me it’s step one of a two-step process that gets us away from this average and toward helping our institutions become institutions of opportunity that can actually nurture individuals.  So Ban the Average is the first step. It’s about helping people realize the average really is the problem. We can’t move forward until we realize that.

The phrase “Ban the Average” comes from the Air Force, which gained insight about the Myth of Average 60 years ago, when cockpits, jumpsuits, and instruction was designed for the mythical average person.  They they realized it was a problem, and even though they didn’t really know what the solution was that didn’t stop them from saying, ‘You know what?  We know the average is hurting our performance and shrinking our talent pool, so we’re going to ban the use of average.’ That initial step was enough to make a signal to the market that things were going to change, and it forced designers and entrepreneurs to create better solutions.  So we can talk about solutions, which is ultimately what needs to be done, but until we have the common understanding that the myth of average is a problem we’re not going to get very far.  So Ban the Average is the first step.

Interviewer:  And how does Project Variability fit into this?

L. TODD ROSE:  Project Variability is an enabling organization.  We see this emerging new science of the individual and we have the knowledge that we to be able to create an environment that understands individuals and nurtures individual potential.  At the same time, we’re seeing a massive shift toward technology in every sector of society, from workforce to science, and in education.  So we see a wonderful opportunity to combine those two in ways that enable us to do things that are almost magical, quite honestly, and that won’t actually cost more money. We can do things in education today that we only dreamed of before.  But it requires making good choice.

What we realized as a team was that those choices are rarely going to be made on their own because people in all parts of the current system have an interest in keeping the status quo.  What we’ve decided to do is be an organization that exists solely to initiate the transition from average to individual.  We’re doing it as a messaging campaign: to communicate to the public so people understand what’s possible and what to ask for, to ultimately create the demand. At the same time, we’re going to enable scientists and entrepreneurs to create solutions that will meet the demand. The truth is, is we exist to put ourselves out of business.  We just need to change the demand structure and help create some new solutions. At that point our goals have been met.

We highly recommend you watch Todd Rose’s Sonoma TedX talk “Ban the Average.

And a special thank you to Peter Dippery of Fuse Media for help making this interview possible.

Ask The Expert: Is It Necessary To Test Again?

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

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).

Enjoy Your Life

Sometimes change is simple, even if it’s not easy

Enjoy your life and be happy. Being happy is of the utmost importance. Success in anything is through happiness. More support of nature comes from being happy. Under all circumstances be happy, even if you have to force it a bit to change some long standing habits.

Just think of any negativity that comes at you as a raindrop falling into the ocean of your bliss. You may not always have an ocean of bliss, but think that way anyway and it will help it come. Doubting is not blissful and does not create happiness. Be happy, healthy and let all that love flow through your heart.

— Maharishi Mahesh Yogi

 

To many, this quote by Maharishi Mahesh Yogi may seem trite, or overly simplistic. And indeed, there are times when we need more than this to create happiness—we may to make changes in our lives or our behaviors, we may need insight and/or healing. We may need transformation through meditation, psychotherapy, or relationship before we can apply new ways of thinking effectively.

However, there is a basic truth to the above quote, as evidenced by Cognitive Behavioral Therapy (CBT); a psychotherapeutic approach that addresses dysfunctional emotions, behaviors, and cognitions through a goal-oriented, systemic process. It is also evidenced through programs such as the 12-Step programs, which helps its members transform, in part, through addressing habits of thought. Programs such as this address a basic truth in the same way Maharishi does: habits of thought create an experience in life, and sometimes we have to consciously change those habits in order to create a different experience, one of happiness.

The Right of Every Child

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.

When Is Therapy Done?

Everyone who has been in psychotherapy has had the question arise: When am I done here?

This question is a good one, as there is no obvious ending point for psychotherapy – it isn’t like a course of antibiotics, or a broken bone, when the ending of treatment can be prescribed.  With psychotherapy, the ending has to do with 1. the goals of the therapy (which can grow and change), 2. the ability of the therapist to adequately address those goals and 3. the ability and/or willingness of the patient to do the work necessary to complete the goals.

Let’s address each of those questions individually.

1.    Have I achieved the goal(s)?

This question is an interesting one.  Often, people come into therapy with acute problems which tend to improve after a while, sometimes within several months.  If the goal was to address these acute problems, there can be a perception on the part of the patient that therapy has done its work and they are therefore done.  That is certainly one way of looking at it but is it a good enough reason to end therapy?

Often the improvement someone experiences is because they have been able to identify the problem, learn new communication skills, and experience being heard through nonjudgmental inquiry and feedback from the therapist.  They learned their part in their problem and/or the psychological impact of the problem and have been able to begin to talk freely about the problem.

However, several months, or even a year, is usually not long enough to address the underlying vulnerabilities that led to the acute problems in the first placeThis makes the person highly vulnerable to repeating the acute problems in the future.  It is also not typically long enough to create a lasting change, so that the person may find that they are coping better but they have not made the deeper changes that address their orientation to life, work, or relationships.  If the goal is to have fewer symptoms and feel generally better, that goal might have been met, but if the goal is to have a broader understanding of themselves and a shift of perception enough to implement lasting change, they may not be.

Take, for example, the case of Marty: Marty came to therapy to try to figure out why she was so burnt out in her chosen field as a creative director in an advertising agency.  Her goal for therapy was to get back her passion and excitement about her work.  Through therapy she discovered that it wasn’t really her work that was the problem.  She and her husband were parenting three teenagers and had very little time for themselves and each other.  Her therapist came to feel that an underlying issue was Marty’s lack of self-care, and began to work with Marty on it. Marty discovered it wasn’t that easy.  It was easy to support her husband to go swimming and get back to his passion for woodshop.  But for some reason she couldn’t seem to sign up for yoga, painting and ask her kids to pitch in more.  Slowly her therapist suggested that perhaps they needed to look a little more closely at her childhood growing up with an alcoholic mother and father.  Marty was willing to consider adding this to her goals and realized that she was never very good at taking care of herself, she was good at surviving in an out of control alcoholic family.  After a few months she was able to sign up for yoga and a few months after that she signed up for weekend painting class.

As in the example above, deeper work often means a revision of the goals.  Sometimes it means that the therapist and patient do not have shared goals – the therapist may see the potential for greater change and the patient may not be interested (see #3).  But often as the patient and therapist work together they come to see that there are goals that were not initially apparent.

2.    Is my therapist capable of helping me achieve my goals?

This is also a very important question and one that can be difficult to assess.  Sometimes people encounter frustration with their therapist and feel they must leave – that they are not done with therapy but done with that therapist. This very well may be an accurate assessment on the part of the patient: even if people seek specialists for their particular problem, or they get a recommendation from someone who they know, not every therapist can work well with every person – there needs to be a “fit” for the therapy to work.  Additionally, some therapists are more skilled than others.

However, often people underestimate their therapist and leave instead of working with their therapist to see if the frustration can be resolved.

Take, for example, the case of Sue and Dave: Sue and her husband Dave brought their child to a therapist because they had reports from school that he wasn’t doing well academically and were concerned that their son had an emotional issue that was causing him to lose concentration.  Sue and Dave luckily saw an adult & child psychologist, Dr. Lee, who not only specialized in mood disorders but also in learning disorders.  After an initial evaluation the psychologist told them that he felt their son didn’t have mood based learning problems, rather he suspected the neurological based learning disorder dyslexia.  Initially Sue and Dave were upset by this thought, and felt Dr. Lee was the wrong therapist for their son. However, after discussing it further with Dr. Lee they agreed to testing and discovered Dr. Lee had been correct.  Dr. Lee was able to work with the family to help them accept the diagnosis, including the depressed feelings Dave initially experienced as a result. Dr. Lee was able to support Dave to work on all his feelings and now both Sue and Dave are involved parents and advocates for their son, and their son was able to receive the help that he needed.

Often, the therapist and patient can work through the impasse together and the process itself can be a very effective part of the therapy.

3.    Am I willing and/or able to do the work necessary?

This final question is crucial.  The process of therapy is intense and powerful. Often when people find their symptoms are (temporarily) alleviated, they feel incredible relief, and this feeling of relief allows them to feel the possibility of wellness.  Typically, as they continue in therapy, they then begin to feel uncomfortable. The therapy process begins to take a deeper look into the person and his or her life. Unpleasant feelings can emerge, such as feelings of dependency, or a deeper unhappiness.  More subtle thought distortions, relationship patterns, or acting out can begin to be revealed, and all of this can be frightening or make the patient feel worse.  This is a common time when people have the urge to leave.

Take, for example, the case of Tony: Tony came to therapy after his partner discovered Tony’s compulsive sexual behavior involving internet pornography, multiple affairs and frequent encounters with prostitutes.  His partner had told Tony if he didn’t get help to stop his behaviors, she would leave and take their three kids with her.  Tony was motivated to change, got into an intensive outpatient treatment program, joined a twelve step program and his wife joined a support group. Tony was hugely relieved that things started to calm down at home and he and his wife were finally able to communicate without painful arguments.  Six months into the therapy, Tony had a very deep session with his therapist acknowledging he thought he’d been depressed since his mom died when he was eleven years old.  A week later Tony came to therapy stating he was confident he was over his problems and decided after six months of no longer acting-out in his sexual compulsivity he was done.  His therapist asked him if he thought he’d touched on something very painful when he had brought up his mother and that he had more work to do to grieve her loss and look at the corresponding depression he’d had since that time.   Tony disagreed and in a couple of days sent her an email stating he would not return.  His therapist called him back and told him that her door was always open to him and encouraged him to consider a final session for closure.  Two months later he returned to therapy and said his wife had caught him again on an internet pornography site. His twelve step sponsor said he was still in his addiction and he needed to get additional help of therapy to get and stay sober.  He acknowledged he wasn’t done and indeed was really just getting started.  Tony later learned that when he had been in so much pain remembering his mother, it wasn’t his sober adult mind doing the thinking and acting, it was the addict defensive part of his mind that was telling him to run and hide from therapy. That was a part of his mind that had developed to help him survive a traumatic event when he was young but it was no longer helpful – it was self-destructive.

People spend a large portion of their lives acting without knowing really why or where the action is coming from.  Part of the goal of therapy is to develop a mind that can think “real thoughts” versus automatic responses, awareness of feelings and ability to tolerate them, so that conscious decisions can be made and intimacy can be created.  The discomfort – experienced as frustration, irritability, restlessness, sadness, pain, anger, unhappiness, etc – can be an indication that the real work can begin – the work of discovery and healing.  The deeper problems are now within reach and are available to be explored and resolved.

Samantha Smithstein, Psy.D. & Elizabeth Corsale, MFT

Helping kids make better choices (about drinking)

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 problemsJulie 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.

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