​​​​​​​On My Mind This Week: Understanding Behavior Plans
 September 11, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.

 

I have had a wonderful week coaching a team of special education teachers in the use of functional behavior analysis and behavior plans.  I get jazzed just thinking about the enthusiasm, expertise and dedication of these teachers, and we have had a great time polishing up their behavioral programming a bit in a few short sessions.  Here are some of the things we have talked about. 

Who needs a behavior plan?  The student with behavior indicated as a concern on their IEP.  The student whose behaviors interfere with learning.  The student who is getting caught in the trap of attention for negative behaviors.  It does not have to be only students who exhibit severe behaviors. 

Before you do anything else, define the behavior.  Behavior plans will fail if they address too many things at once, and you can’t take data on something you can clarify.  So don’t say “non-compliance,” describe his behavior: “not responding verbally or with body language to teacher instructions.” 

A behavior plan is different from a behavior contract, which is different from a behavior checklist.  The plan is what you write for the team to detail what everyone is going to do when the behavior doesn’t occur, and when it does.  The plan should include proactive positive programming to prevent the behavior, and it should also have a hierarchy of interventions for use by staff or parents when the behavior occurs.  The behavior plan is not written for the student to read in most circumstances.  It is for the adults. 

The behavior contract, if you use one, is a kid friendly document in which you two agree on what he will do and what that will earn him.  A contract means that everyone gains, so it is not just stating your expectations of the student.  The student should have buy in. 

A behavior checklist is an activity by activity check off sheet, with one or more appropriate behaviors listed.  The student and/ or staff member puts a check (or a happy face, or a stamp…) in the box, and if he gets all of them something good happens.  That may just be showing mom, or it may be a more formalized reward. 

Every behavior plan should start with the positive programing needed to prevent negative behaviors from happening.  A few examples might be a positive reinforcement program, an educational program for managing feelings (like Zones of Regulation), or the use of proactive breaks to lower anxiety and help a student remain included.  We need to put our emphasis here, and often we can keep the behavior from happening in the first place. 

If a child is doing a behavior to escape a situation, and you remove him or suspend him, you may be teaching him to do it again.  It is all about the function of the behavior.  Standard school protocols that mandate suspension miss the fact that such a consequence may make it more likely to increase the behavior rather than decrease it.  You have to look at the child and the behavior, rather than focusing on an across the board policy.

When you take data (and you need to!), address intensity and duration in addition to frequency of occurrence.  How does that look?  If you are collecting information on his temper tantrums, don’t just record the number of tantrums per day.  Use start time and stop time for a total number of minutes, so you know if tantrums are five minutes or two hours.  In addition, use a 1-5 scale of intensity, with 1 being mildest and 5 being strongest ever, so that you can see patterns and improvement. 

Writing a behavior plan and taking data are not just more needless paperwork; we do them because they help us to look at the individual child’s strengths and challenges, and to make empirical decisions about how best to help.  As a teacher you need to be taking data and letting it inform your decision making.  As a parent you need to be sure that empirical data is being collected, shared with you and used.  As an administrator you need to be sure that proactive behavior analysis is occurring as a prevention method, and not only when your staff members and students are in crisis mode. 
 

 

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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What I Read This Summer
September 5, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

My summer is over, and I actually did get to some of the books on my reading list.  This week I want to share two great reads with you all. 

From Anxiety to Meltdown:  How Individuals on the Autism Spectrum Deal with Anxiety, Experience Meltdowns, Manifest Tantrums, and How You Can Intervene Effectively.  Deborah Lipsky. 

Deborah Lipsky has autism, and her book is an incredibly insightful description and resource about the link from anxiety to meltdown for those with ASD.  Lipsky is practical and hands on with headings like “interrupting routines,” “meltdowns are not tantrums,” “substitute teachers as a transition issue” and “too much choice causing a meltdown.”  She has walked the walk, as they say, and her insights are profound.  

I have to say that there are a few times here where I was concerned that Lipsky generalized her personal experiences to all people with autism.  A few caveats would have been wise as she wrote; anxiety is so individual.  Nevertheless, I strongly urge you to read this book.  I learned a great deal, and you will too.

 

Brain on Fire:  My Month of Madness.  Susannah Calhalan. 

I could not put this book down.  A true story of Callhalan’s gut-wrenching and sudden descent into psychosis, aggressive behaviors, inabiltity to communicate,amnesia and physical decline, and the journey to find out that her life threatening symptoms were actually a rare auto-immune disease.  Calhalan’s story sounds like science fiction, which makes it all the more frightening.  Here’s a little sample: 

One day, I woke up in a strange hospital room, strapped to my bed, under guard, and unable to move or speak. My medical records—from a month-long hospital stay of which I have no memory—showed psychosis, violence, and dangerous instability. Yet, only weeks earlier I had been a healthy twenty-four year old, six months into my first serious relationship and beginning a career as a cub reporter at the New York Post. 


If this story were fiction, we would say the author went too far.  It is non-fiction however, and the author is both readable and compelling.  Scary, enlightening, and a must-read. 

 

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Valuable Advice: The Five Year Rule
 August 28, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.

 

I heard a great talk this summer by Peter Gerhardt, Ed.D.  There were many interesting points in his talk, but today we are focusing on my favorite advice of the summer, with thanks to Dr. Gerhardt.  

The “five year rule” as he explains it states that we need to think five years ahead as we develop goals and skills training for our students and children with developmental disabillties.  Specifically, when thinking about the social skills and sexuality instruction, even at a young age, we need to say, “What skills will he need in five years?” and we need to start teaching those skills now.  So for example, if your child is eight years old, what social and sexuality skills will he need when he is thirteen?  Gulp, right? 

We in education are always stuck in reactive mode.  We write IEP goals for issues that already exist, and we focus on what he can and can’t do now. Unfortunately, by the time we start working on it the issue is often huge, and we are too little too late.  How refreshing and wise to take time to think about what he needs next, and how we are going to get there.  This is advice that would have saved lots of angst in my house, and for most of the students I know in special education. 

Whether you are a teacher or a parent, I urge you to take some time this fall to think through each child’s needs using the “five year rule.”  I can’t think of a greater gift you can give.  

 

 

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Teaching, Research, Politics, and the Willing Suspension of Disbelief
 August 20, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

Politics is hard to avoid these days.  As I listen and read, I am continually struck by the fact that many voters believe strongly in their causes or candidates in the face of scientifically verified facts that they simply ignore.  The facts show that the candidate has made false statements repeatedly?  We won’t acknowledge it.   The hard research shows that the accusations against a candidate are untrue?  Who cares, as long as our person wins?

This is of course not a tendency that is limited to politics.  This summer I listened to a radio personality talking with Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases. Dr. Fauci was asked about the best strategy to keep infants and toddlers safe from Zika in Florida since the recent outbreak there.  He urged parents to use bug spray containing DEET, a chemical that repels mosquitos.  The radio host said that she was not comfortable using DEET on small children, and Dr. Fauci explained that the best research found it safe, in addition to being much less risky than Zika.  The host simply stated that she was not changing her opinion, and would not use DEET.  It was an emotion packed reaction, despite overwhelming facts to the contrary.

The history of disability is full of examples of the willing suspension of disbelief.  Repeatedly over the years desperate parents and professionals have searched for a cure for autism or other disabilities, vulnerable to the latest fad that is hyped as a miracle, despite a lack of research to validate those claims. A few examples you may remember include Institute for Achievement of Human Potentials’ Domen and Delacato patterning (1960’s-1970’s),  the Option Institute’s Son-Rise program (1970’s), Facilitated Communication (1990’s), the MMR vaccine scare propagated by now discredited physician Andrew Wakefield (1998), and most recently, the Halo Soma Rapid Prompting Method, or RPM.

We could use any of these interventions as another example of overwhelming empirical research disproving the method, while parents and professionals reacted, at least initially, by maintaining or strengthening their belief in its value.

I did my dissertation on Facilitated Communication (FC).  FC swept the nation in the 1990’s and was believed by many to be a “miracle intervention” for autism spectrum disorders and other disabilities.  FC is an augmentative communication system that involves physical support by a facilitator, who is usually a parent or professional, to the student’s arm or hand as he uses a keyboard device. 

Facilitators’ beliefs mirrored the classic studies of cognitive dissonance, principles that you can apply to the situations in politics and in the news.  There are two primary principles here.  First, because dissonance is psychologically disturbing, it motivates a person to try and reduce the dissonance by either changing his knowledge or changing his behavior. Second, the more valued the idea or behavior is, the more dissonance the person experiences.  Facilitators had, at the time of my research, staked their professions on the technique, changing curricula, discarding other techniques, and making changes in placements and jobs for individuals based on facilitation.  Believers responded by using classic methods to avoid the implications of the research; they used circuitous logic , they made entire sets of new information invalid, and they used different frames of reference to justify their attitudes, such as claiming that studies were rigged.

We can look to the MMR vaccine scare and find the same concerns.  “Believers” wanted to believe, despite overwhelming scientific evidence.  In this case however, the actual source of the original study implicating the vaccine was discredited as a fraud.  Still, celebrities like Jenny McCarthy wrote books promoting the myth, and a huge movement resulted in new outbreaks of Measles as less families vaccinated their children. Despite all the facts, some families still do not want MMR vaccines because they believe in a causal relationship between the vaccine and autism. 

The public radio host who didn’t believe in the use of DEET with children to prevent the spread of Zika did not have any evidence to back up her reservations.  She had one of the leading experts in the world telling her that DEET is our best defense, but she didn’t want to believe him.  Like Jenny McCarthy during the vaccine scare, her celebrity status may have conferred a legitimacy on her for her listeners, who sadly may also hesitate to protect their children.  It is hard to work through the cognitive dissonance and accept that your deeply held belief may be wrong.

The “religious fervor” of those who maintained their belief in these trendy interventions has always fascinated me, and I see the same fervor of belief in politics right now.  Beliefs, and fervent emotions rule voters, rather than facts.  Whether you are experiencing cognitive dissonance and avoiding the incoming facts about Zika virus prevention, special education interventions, or your candidate of choice, we isolate ourselves socially with those who believe like we do and we hunker down.   It is hard, and brave, to face that new information and re-think our beliefs. 

Much to think about.  Want to read more on this?

When Prophecy Fails.  L. Festinger, 1957.

Attitudes Toward and Applications of Facilitated Communication in Greater Chicago.  Nancy Magnus Kopnick, 1995, Dissertation University of Illinois at Chicago.

Autism’s False Prophets:  Bad Science, Risky Medicine and the Search For a Cause.  Paul A. Offit, M.D. 2008.

Asking Questions.  S. Sudman and N.M. Bradburn, 1983.

A Passion to Believe:  Autism and the Facilitated Communication Phenomenon.  1997.

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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​​​For Parents and Teachers:  Tips for a Great Start to School
 August 14, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

School is starting in many parts of the country (I know, it just shouldn’t start before Labor Day, I agree!).  As a parent and as a special education consultant I sit on both sides of the table.  Here is some advice to get the year started in a positive and productive way. 
 

Teachers:

1.    Read the IEP’s and 504’s right away.  I know that the “wisdom” is to wait a week or two and get to know the kids first.  However, that sets kids up for failure in that first week, and makes for a terrible transition.  Kids are in special education for a reason, and the IEP or 504 is designed so that you don’t have to reinvent the proverbial wheel.  In addition, many of these kids will not recover easily from a bad transition.  By providing supports from Day 1 you gain parent trust, student trust, and you minimize behaviors.  Oh, yeah, its also the law.  So please, please be ready on Day 1.  You will be glad you were, when your friend across the hall is dealing with lots of behaviors and other problems. 

2.    Call or email the parents of your special needs students before school starts, or failing that, during the first week.  Just listen.  Let them know you value their input and want to learn about their child.  Be positive.  It will make a world of difference. 

3.    Meetings already scheduled?  Here are a few pointers.

A.    Use adult size chairs.  It is demeaning to be a parent and be asked to sit in a tiny chair.  No matter what you do, this meeting is going to be hard for the parent… intimidating and depressing.  Allow as much dignity as you can. 

B.    Don’t address parents as “Mom” and “Dad.”  This is such a condescending approach.  You can ask permission to call me by my first name if you want me to call you by yours, but unless you want me to spend the year saying, “Teacher, I have some concerns,” please don’t call me “mom” to my face.

C.    Bring food, or offer coffee.  Food and drink bring people together.  They soften and make us more comfortable.  Did you know that every time most parents attend a team meeting they are thrown back into the grieving process for their child all over again? Be kind and gentle.

 

Parents:

1.    Start positive.  Tell your teachers how excited you are, what great things you have heard about them, and how lucky you feel to have them on your team.  

2.    Write a one page (no more, or they may not read it) synopsis of the most important heads up’s on your child.  Put the positives in, but include specific things they need to know ASAP like allergies and behavioral triggers.  Remember, the less you write the more they will read.  Send it to both your special education teacher AND the regular classroom teachers who will come in contact with your child this year.

 

3.    If you want frequent communications from your special education teacher,  let them know the best way to do that.  Be specific about what you want so that you won’t be unhappy.  But be realistic; your teacher has many other children and parents that occupy his day. 

4.    Ask your teacher if she needs any extra supplies.  Does your child go through lots of tissues?  Send extras.  Does your kid eat (literally or figuratively) pencils?  Send In an extra supply.  Have the resources to provide extras?  Ask your teacher what is on her wish list for the classroom.  Remember, many teachers use their own money to buy the things they need.  Fans, used rocking chairs, mini-tramps, bean bag chairs… see what they need. 

5.    Meeting with her?  Be five minutes early, and patient if she is ten minutes late.  Remember that other parents are trying to get hold of her at the same time, and she is being pulled in a thousand different directions.  Have a list in hand of the points that you want to cover or questions that you want to ask.  Be thorough, but keep the time respectfully short.  Say thank you a lot!
 

 

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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​​Do You Know Where Your Teachers Are?
 August 7, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A. 

For many of you it is the last few weeks of the summer now.  You may be reading this from your cabin on a lake, while you watch your children play in the back yard, or between frantic attempts to corral your bored and restless kids as the lack of structure bores in like the heat and humidity. 

Do you know what your teachers are doing?  They are not getting paid for it, but many of them are already back in the school building, setting up their classrooms.  They have already reviewed your child’s special education binder, and they have probably spent the summer attending professional development seminars and reading up on topics that will help them next year.  

The devoted men and women who nurture and care for your children do not get paid as much as nurses, engineers or baseball players.  They do not get paid overtime (although they almost all work extra hours), and they often buy their own supplies.  The paperwork required of special education teachers continues to expand, and the time given to do it never does.  They certainly are not doing it for the money. 

Today I watched a hand-off from one special education teacher to another.  The departing teacher had spent countless hours organizing and detailing all the plans, reward systems, hints, materials and of course official documents to give to the new teacher.  The new teacher was already in the process of calling each family to introduce herself and get input.  The respect for the students and parents that these two professionals showed was both remarkable and heartwarming, but it was not uncommon.  

As a parent of young people on IEP’s or 504’s,  I have done my share of critiquing and rolling my eyes.  I have set high standards, I have worried about my kids, and I have fought for them when I had to.  I am here to tell you though, that I am continually in awe of the teachers in my field and in my community.  Teachers are, without a doubt, the most under-paid, under-appreciated and under-valued group of professionals I have seen.  

So on behalf of all the parents out there, here’s a big thank you to the teachers who are already at school getting ready.  Thank you for your dedication, your expertise and your kindness.  Thank you for hanging in there despite the working conditions.  Thank you for patiently responding to my (and all of our)many emails and phone calls.  Thank you for being open to new ideas and to constructive input.  Thank you for being so amazing.  Here’s to a wonderful school year.

 

 ***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis


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Wonderful Disability Program in Israel
July 31,  2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

I just spent 10 amazing days in Israel.  While my husband was teaming with our fabulous guide to lead our group, I was lapping up the sights, smells, tastes, religious identity and history.  It was my third trip to Israel, but as always I found new insights, even when seeing some sights again. 

I did not get to experience the inspiring program called Nalaga’at in person on my trip, but I was so excited about their concepts that I had to share.  They are top on my “things to do” list when I have another opportunity to visit.


Nalaga’at is Hebrew for “please touch.”  The center offers unique employment opportunities for indivuduals who are blind, deaf, or deaf-blind.  With a focus on theater and the arts, Nalaga’at supports each person’s right to contribute to society in his or her own unique way. 

The Nalaga’at Theater was the first deaf-blind theater group in the world  when it opened its doors in 1999.  Located in Jaffa port, close to Tel Aviv, the company has performed all over the world in addition to regular shows at their Jaffa center.  Most of the 18 actors in the troupe have “Usher Syndrome,” a genetic syndrome.  As a result of the disability, each actor has an interpreter of sign language by touch (think Helen Keller) who accompanies them during rehearsals and performances.  The company uses creative theater language including drum beat vibrations as cues, and training for interpreters in the dark. 

The BlackOut Restaurant is a part of the center as well.  The restaurant is fine dining in the dark, escorted by blind waiters.  The promotion for the restaurant aptly says, “When the eyes do not engage in the eating process, one’s ability to taste and smell food sharpens.  There is so much to be “seen” when eyes are closed…”

In addition, the center is home to an events center and a workshop center with employment opportunities for adults who are deaf, blind and deaf-blind.  They also offer sign language workshops. 

How amazing must it be to experience a meal without vision, guided by someone who lives it every day?  How cool to see high quality theater in a space that supports the communication of actors who are blind and deaf? 

A ten day trip to Israel is way too short to experience even a small number of the wonderful things that the country offers.  I was fortunate to dip a toe in the culture and the history.  I can guarantee you that I will be carving out time on my next trip for a visit to Nalaga’at.  I hope that someday you can have that opportunity as well.

 

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Garrison Keillor and “ Interesting Children”
 July 17, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

This summer Garrison Keilor ended his 42 number of years on Prairie Home Companion on public radio, a unique blend of storytelling, music and homespun humor.  Recently I listed to a fascinating interview with Keillor, who self-identifies as someone on the autism spectrum.  He also has a daughter with Angelman Syndrome, a developmental disability.  If you see him rather than listening to him on the radio, all of you in the autism community will nod your heads knowingly.  He doesn’t make eye contact and is socially awkward, even as he charms and brilliantly captivates.  In the interview I watched, Keillor spoke to parents of children on the spectrum, referring to them as “parents of interesting children.”  I loved that.  If only the world saw ASD kids as “interesting.”


 Garrison Keillor is not the only celebrity to have “come out” as autistic in recent years.  Without wading into the debate about famous folks who may or may not be on the spectrum according to “experts” on the outside looking in, here is a partial list of big names who say that are on the spectrum.  You will be surprised.
 

Daryl Hannah:  actress (Splash, Wall Street)

Dan Akroyd, actor (Ghostbusters, Saturday Night Live)

Tim Burton: director (Beetlejuice, Sweeney Todd, The Musical)

James Durbin: singer, American Idol Season 10

Susan Boyle: singer, Britain’s Got Talent

Heather Kurzmich:  America’s Top Model Cycle 9
 

Look at all these “interesting people.”  Huge successes in their fields, bright and talented.  Does it matter that they have autism spectrum disorders?  Only in the sense that it gives hope to all the children we know who feel different, are bullied or are struggling.  

I look forward to the day when having an autism spectrum disorder is like having red hair or being left handed.  It is another characteristic of what makes a person unique, but it does not define them.  Who knows how many of the kids we know will grow up to be on this list? 

 

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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​​​Finding Your Happy Place
 July 10, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

Recently I got my yearly sail in calm waters across “my lake” in Michigan.  Because I have degenerative disk disease I particularly treasure my time alone in a sailboat.  I never know, year to year, if I will be able to sail that summer or whether a sail will be my last.  When I am out on the boat it is a transcendent experience.  I feel free of limitations, I feel competent and graceful (which I never feel any other place!), and I feel spiritual.  That sailboat is where I go in my mind when I need my happy place. 

This year I chatted with a friend who teaches private skiing lessons.  She had the opportunity this winter to teach a youngster with autism over several lessons, and it was a remarkable, if not stress free, experience.  I can only imagine how it must feel for that child to be on that mountain, free to fly, not limited for the moment by one’s ASD or by the world.  The sensory input, the freedom, and joy must be overwhelming. 

We all need our happy place; the activity or place that makes us feel one with the world and competent.  I have heard this referred to as “flow,” (Mihály Csíkszentmihályi) and I know that it can happen in many different ways in a very individual fashion.  Some of us feel it at work when we are totally immersed, creative and on top of things.  Others find “flow” in a hobby such as running or creating art.  The best teachers experience it when they are in their classrooms and children are engaged.  I know a young man who survived difficult times because he finds that immersive creativity and competence when he is on stage acting.

Individuals with struggles in their lives, whether it is an autism spectrum disorder, ADHD, mental illness, chronic health concerns, or any life challenge, need a place and a way to be “free.”  There is healing in that place, and it can get them through the tougher times.  The challenge is to identify that activity or moment, and to nurture it.  As parents and professionals, we tend to focus on their weaknesses and what they CAN’T do.  The lesson here is that we need to focus more on what individuals love; what they can do and what they want to do more.  While that may be a traditional activity like singing, painting or sports, it may also be quirky.  If jumping on a trampoline is his thing, he needs to have opportunities regularly to experience that joy.  If rocking to music on headphones is his happy place, that’s a good thing.  We all need “flow.”  Think of it as therapy. 

I will spend the next year treasuring my time gliding across the lake, just me, the boat, the water and the breeze.  The young man who does theater gets his moments when the audience is with him, and it keeps him going through his days.   I hope that that young lady who skied down those slopes knew joy and remembers it when things are tough.  We can help children and adults with challenges find those moments, and we can make more of those moments happen in their lives.  Caregivers need happy places too.  

Happy sailing to all of you.

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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​​​​​​​​​​​What Is (and Isn’t) On My Reading Pile This Summer
July 3, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.

 

So I decided to pick some professional reads for the summer, and the first thing I did was to put the word “autism” into Amazon.  The first book that popped up was Autism Breakthrough by Raun K. Kaufman.  That made me really sad.  I am sure that Mr. Kaufman writes a lovely book.  However, the Son-Rise Program, which is the Kaufman’s program and the subject of the book, is not and has never been research based or validated by empirical studies.  This program was the go-to miracle cure when I was in college, and it did a terrible disservice to lots of kids and families.  

I thought we were past this one.  NOT on the reading list this summer!  It is however, a good lesson that you can’t just google for information or resources.  Not everything out there is of equal quality.  Ask someone you trust. 

 

Back to the reading list.  I hope I get to it all: here’s the list!  (Not including my junkie beach reads, of course!)


Thicker Than Water:  Essays by Adult Siblings of People with Disabilities Ed: Don Meyer.  I just finished this one, and it is powerful.  Short essays by a variety of adult siblings, sharing their experiences and feelings.  It is not all sunshine and roses; while some inspire with their optimism and all that they have received as siblings, others tell hard truths of their personal challenges.  Sometimes it is painful, but the truths in this book are fascinating and important.  I recommend it for any family concerned about their special child’s sibs, and particularly for any adult sibs wanting to learn more about what others experience.  Great resources in it too.

 

Here’s the plan for later this summer:


From Anxiety to Meltdown: How Individuals on the Autism Spectrum Deal with Anxiety, Experience Meltdowns, Manifest Tantrums, and How You Can Intervene Effectively by Deborah Lipsky


Brain on Fire: My Month of Madness by Susannah Cahalan

Stay tuned for more reviews, and enjoy the summer.

  

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Not In My Back Yard
 June 26, 2016

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

“I don’t want the elementary schools to merge in our district, said an acquaintance of mine in my neighborhood.  You know, there are a lot of ‘Those Kids’ at the other school.  It would be better if they stayed over at that school.”

That was a long time ago, but with all the hate and fear of whole groups of people in the news, the moment when I realized that those stereotypes were all around me came flooding back.  While my so called friend was referring to children with disabilities, you can substitute any group of people and I believe it would have been the same reaction.  Not those people who don’t look like us because of their skin tone.  Not those people who pray differently than we do. Not those people who entered the country from a different border than our families did.  Not those people who don’t speak English.  Not those people who define marriage differently than we do.

This blog is not about politics, and I try really hard to keep my political beliefs out of my social media and professional life.  Similarly, my religion has no place in my work, and I try to keep those realms separate.  Sometimes however, values and a basic code of right and wrong supersede boundaries.  Sometimes, hate and fear cannot be allowed to “trump” right and wrong. 

I see no difference between the hate filled rhetoric in our world toward immigrants and the hate filled actions toward people in the LGBTQ community.  I see no difference between the hate speech of those who want to build a wall to keep Latinos out and the next planned border (physical or systemic) to separate the Jews from the Christians, or the developmentally disabled from the brilliant, college bound students in a school district.  Bigotry is bigotry, and fear leads to hate. 

To paraphrase Rev. Martin Niemoller (1892-1984), and using the version of his famous words found at the United States Holocaust Memorial Museum:


First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.

Then they came for the Trade Unionists, and I did not speak out—
Because I was not a Trade Unionist.

Then they came for the Jews, and I did not speak out—
Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.
 

I will never forgive myself for not speaking out when my neighbor judged the children at the school down the street.  I was worried about the social ramifications, and I was a coward.  I can only try to speak now, for all my friends with developmental disabilities, for my friends who are gay, for the lovely people I have met over the years who are recent immigrants, and for my friends who are African American.  We cannot let hate win.  Or surely they will come for us all.  

 
 

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Thoughts on the Hea​dlines:  Horror, Blame and Mental Health
June 17,  2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

This week I am grief stricken, and I am angry.  The news is filled with horror.  I promised myself that I would not trivialize the grief of others by piling on to the online world’s blurbs and sad faces, judgements and politics.  I retract that promise; I have a couple of things to say. 

Twice recently I have watched as cruel people condemned the parents of children involved in accidents or tragedies, first at the Cincinnati Zoo and then at Disney World.  In this morning’s paper I read:

“My wife and I have raised two girls…neither one of them was ever grabbed by an alligator.  Where were the parents?”  

Seriously?   I am so angry that anyone would pile on to the unimaginable grief that these parents are experiencing.  So even if you ignore the fact that the father of this child WAS there, and actually fought the alligator unsuccessfully, and even if you ignore the fact that they were in the “happiest place on earth,” presumably a safe vacation destination, and even if you ignore the fact that they were obeying the rules which said “no swimming,” why would you want to add more pain to the ruined lives of these parents?  

I challenge each of you who have raised children to honestly say that you have never turned around in the grocery store to find a toddler gone, and frantically run the aisles in search of them.  I know no parent who does not have that “near tragic” story… “he rolled off the bed,” “he grabbed the bottle of Tylenol,” “she broke free of my hand and ran into the street.”  Accidents happen, and thank God most of them have happy endings.  Mistakes happen, and we say, “There but for the grace of God go I.”  So for the parents who said “I turned my back to grab his brother and he was gone, under or over two barricades in the gorilla enclosure” or “He was playing and it was dark, but he was not in the water, and I was with him, and then, my life as I know it ended,” I say:

My thoughts and prayers are with you.  It could have been me, or anyone I know, and it could have been their child. 

 

And still there’s more. 

The tragedy at the nightclub in Orlando is a cloud over everything this week.  I stand with the families of those who were killed or injured, and with the LGBTQ community.  In today’s news I saw a poll that asked, “What do you think mass shootings in this country are a reflection of?”    Here’s how the answers came in: 

Mental health problems 63%

Gun control laws 23%

Both 10%

No opinion 1% 


OK, let’s think about this.  First of all, what does “mental health problems” mean?  Let’s not throw all our friends with depression, bi-polar disorder, anxiety disorders and hundreds of other challenges out there as the possible reason or mass shootings.  It is stigmatizing, inaccurate, and certainly not helpful.  

If the poll was trying to ask if the lack of support services for individuals with serious mental health problems contributes to their illnesses, and therefore puts them at increased risk of reaching crisis, I can understand the question.  It didn’t say that.  But the reality is that we offer a tragically inadequate treatment continuum for our loved ones with mental health challenges, and so many of them live on the streets, can’t or won’t take medications, turn to suicide, or even, in a few cases, become violent.

And what happens if someone does become dangerous or unstable?  It is easy to get a gun, and with minimal controls on the ownership of guns the individual in crisis becomes a danger to himself and to others.  Is that a reflection of his diagnosis?  Or is it a lack of commonsense laws and regulations? 

We need to take care of each other.  We need to stop politicizing the news, stop blaming the victims, and start doing something about it in a proactive sense.  We need to accept that horrible accidents happen, and sometimes there is no one to blame.  We need to embrace all law abiding people, regardless of their race, religion, sexuality or gender.   And we all need to go home and kiss our loved ones.

 



***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Talking To Your Teenagers
 June 12, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

As my teens and young adults come and go with the end of the school year, I am feeling sentimental.  Of course, it seems like yesterday that they were banging Tupperware drums in my kitchen, wrestling in the family room (until someone started to cry), and giving me grey hair in the driving process.  I have learned a lot over the years by doing most of it wrong at one point or another, so I thought I would share some of what I know.  

Family dinners are important, but what really matters is that you find time together.  Week day dinners have vanished around here, casualties of the appetite suppression of ADHD meds, evening rehearsals, and long days at work.  We value our Friday night dinners together, but more importantly, we catch time with our guys where we can.  Talks in the car can be really helpful, because you don’t have to make eye contact.  Less threatening sometimes.  Take out at 10 PM may not be particularly healthy, but if that is the time that you have, use it wisely.  And Chipotle motivates everyone, even when they aren’t hungry!  

Watch football together, even if you hate football.  Or play video games, or go to a movie that you wouldn’t ordinarily see.  I have flunked this one, at least in the video game department, but the more you share, the more you have to talk about.  At least I am a Game of Thrones fan! 

Meet the posse.  Who are her friends?  Try to get to know them a little when they come to your house, even if your teen is no help in this department.  Is he going out tonight?  Ask who he is going with.  Our rule is that we get to know where you are, and who you are with.  

Learn to listen, not to give advice.  I struggle with this one, even though I know the right thing to do. But truly, often a teen just wants to be heard.  And respected for what she believes, even if you, with your age and experience, know  she is way off base.  

Pick your battles.  I would love my house to be immaculate, but I settle for once a week pick ups.  I gave up on any beds being made (beside my own) years ago, and if we want the lights turned out, my husband and I do it.  On the other hand, there are certain expectations if you live under our roof, and we stick to our guns.  Actually, “no weapons” is one of the things we stick to, but you know what I mean. 

Bounce it off of someone you trust.  I am not always intuitive when it comes to teenagers; my husband usually is.  We learned over the years (the hard way), to talk to each other before we talk to the kids.  He needed the perspective when they were little, I needed the perspective when they hit puberty.  Whether it is your significant other, your best friend or a trusted clergy person, reach out.  Teens are tricky, and it really does take a village.

Trust but verify.  I feel very lucky to have good kids who have been, for the most part, honest with us.  We have at times been told things that we didn’t necessarily want to know, and that we couldn’t share.  We also have an agreement that if you drive there and shouldn’t drive home for any reason, or are somewhere that makes you uncomfortable, we will pick you up at any time with no questions asked.  Safety first. 

Trust your gut.  I think that parents who are involved in their kids’ lives have a sixth sense.  We may not always want to believe it, but we know when they are OK and when there is something to worry about.  If you have concerns, there is probably good reason.  And at that point, you do what you have to do.  If he is drowning you save him, even if you have to do it kicking and screaming.  You are not his friend, you are his parent. 

Last thing… do not abandon hope.  Someone told me years ago that somewhere around the age of twelve or thirteen the switch flips, but when they turn 17 it flips back on and they are human again.  I am not sure about the exact ages, but I will promise you that they do grow up.  And they figure out that you do know what you are talking about.  And they hug you in public again.  And you laugh together about the mistakes they made, and the mistakes you made.  

Hang in there! 

 

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Who Speaks for My Friends?  The Plight of Those With Significant Disabilities
 June 5, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

Meet my friend Bobby.  He is a young adult with autism.  No one would ever have used the term Aspergers with Bobby; he is non-verbal, has severe behavioral challenges, and he is ruled entirely by his senses.  Bobby needs constant supervision in order to be safe, and he does not function safely and successfully in an included environment.  His “least restrictive environment” as we say in education, is a highly structured, unchanging, enclosed environment that provides him with the availability of 1:1 support at all times.  Bobby is a happy young man when he has what he needs, including lots of sensory input of his choosing, predictable schedules and people, and people around him who understand his complex issues.  

Bobby has worked in an adult workshop in Ohio since graduating high school.  His parents, with whom he lives, are aging.  It is their hope that he can have a home in which there is a high level of supervision and without roomates, since Bobby isn’t  really the sharing type.  He can become aggressive if anxious, so it is truly a safety issue. 

In the last few years, the federal government and subsequently the state government have passed laws and regulations that prohibit non-inclusive day program environments like Bobby’s.  His workshop will soon close, and there are very few options out there for him.  While the stated philosophy behind this trend is for work settings to move into the community and to be inclusion settings, Bobby and other folks with his needs are not candidates for these types of jobs or activities.  In addition, there is very little money available to open new agencies or options for the Bobby’s of our community.  

Bobby’s parents have also learned the frightening reality that there are few residential options for him if he doesn’t live at home.  Any funding out there is channeled toward included apartments and other community opportunities, but Bobby can’t live on his own with minimal supports.  He needs round the clock support staff, and the options just don’t exist.  What does exist in terms of “beds” or funding has waiting lists that can be 5-10 years, or more. 

Self-advocacy is a movement that has defined the world of adult disabilities in the last couple of decades.  Brave and eloquent individuals have spoken out about who they are, what they need, and how they want to be treated.  

Here is the problem.  No one is speaking up loudly for Bobby.  Self-advocates can only talk about what they know, and the needs of an individual who can communicate effectively with an audience are not the same needs that he and his peers have.  Legislators are hearing all about inclusion, but not about the end of the continuum folks who feels most comfortable in a segregated setting with highly skilled staff members.  This silent minority has always been ignored by the disability community.  The Bobby’s of the world are not pretty poster children, they don’t offer amazing success stories, and families feel better about the future of their own children with challenges if they only hear about the kids who made it back into the mainstream and lived happily ever after.  

Sorry, too much snarkiness there.  I apologize, but I am so worried about the Bobby’s and their families, and the situation is getting worse. 

Unfunded mandates have been a problem in the world of developmental disabilities for years.  Since the 1970’s when abuses at large institutions began to force their closures, adults with disabilities have been pulled from segregated settings without adequate resources as an alternative.  We want the unsafe settings to go away, but we don’t want to pay for the safe, appropriate settings the dislocated individuals need.  No one wants the return of the horror of those facilities.  However, we seem OK to ignore the desperate needs of the same adults who have no place appropriate to live and no place appropriate to work.  Whatever happened to individualized services?  

We need to advocate for Bobby.  He and his peers need more options for appropriate work settings, including the option to work in a “segrated’ setting if that is what is best for the individual.  That means the law, and the subsequent regulations, have to change.  He needs a place to live, now, that offers the individualized services that will make it possible.  That will only happen with more funding diverted to folks like him.  And he needs us to take an interest in his life and his needs, even if they are not the pretty success story that we want to hear.



 
 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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In honor of all the transitions you are surviving this season, and of the knee high weeds surrounding my vegetable garden, I am re-posting one of my favorite early blogs.  Many of you never saw this one.  


Making My Peace with the Weeds: A Philosophy of Gardening and Raising Boys
May 29, 2016 (originally posted July 31, 2015) 

Nancy Magnus Kopnick, Ph.D., B.C. B.A. 



After thirty years in the field of developmental disabilities, I have learned to pick my battles.  Some behaviors are best ignored, both because it is the best way to reduce a behavior and because you can’t address everything at once.  I use the same philosophy in my vegetable garden. 

My little garden started with a corner of our yard that my husband fenced in for me and prepared the soil.  While it has grown a little in the past three years, it is modest.  Each year he helps me to plant my little seedlings, and he drags the hose over there every day or two to water.  What do I do for my blossoming tomatoes, cucumbers and eggplant, you ask?  Well, I talk to them and I prune them.  I dote on them and get tremendous pleasure out of watching them grow.  Here is what I don't do.  I don't weed.  Well, not very much.  

Today was the first day that I weeded in weeks.  While my aches and pains are minor compared to many, they have been a part of my life for over twenty years, and things like weeding are rarely realistic. Tonight as the sun was going down I went out and struck a bargain with my weeds.  We can co-exist, I explained, as long as you are OK with giving my plants some room.  Any weeds outside the direct perimeter of my precious vegetables are OK with me, and when I can weed I will concentrate on those that stubbornly crop up too close for parallel lives.  I won’t be working my way out very far.  And I’m OK with that.

Raising boys with ADHD requires the same approach.  Yes, you have to be a helicopter mom when you need to (I sure have, just ask my kids!). Even more crucial however, is to love them, nurture them and continue to find indescribable joy in watching them grow into the men they are and will be.  Years of experience, both professional and personal, have taught me that you need to pick your battles.   Like my weeds, if it doesn’t hurt them or anyone else sometimes you have to let it go.  So rooms don’t get cleaned, lights don’t get turned off, grades are not always what you would like, and their choices are often different from those that you as a parent would make.  We as parents and professionals don’t always make good choices in this department, and we “pick weeds” that we should just ignore.  And then we always regret it. 

Having ADD/ ADHD in whatever variety is another way of seeing the world, with vivid colors, lots of humor, and plenty of excitement!  One person’s “behavior” is another person’s humor; one person’s “off task” is another person’s creativity.  One person’s weed is another person’s wildflower. 

  My little garden may be unkempt and full of weeds, but it brings me joy.  My sons, like yours,  are finding paths that are unique.  Those paths may wind around, and it may take them different amounts of time to walk them, but as when I garden, I have to find joy in the process. We all have to find peace with imperfect corners, unexpected weeds, and wildflowers.   And sometimes, just sometimes, we  pick a few that don’t belong.  Or ask for help.  And that's OK. 

 

 

***  The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral support person or from a professional who is trained and certified in behavior analysis.


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Hey Blog Readers, I need some feedback.  Was last week's blog post too long? Should I have broken it into two parts over two weeks?  OK as is?  Please go to the "contact Dr. Kopnick" above, to my Facebook or Linked In page, and weigh in!  And please send me questions or ideas for future posts!



Comedy and Aspergers?
 May 22, 2016

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

You heard me right; that’s comedy and Aspergers!  I just read about four young men who have a successful comedy team, oh and Aspergers too!  They call themselves “Aspergers Are Us.” The guys have been working together since camp days, and eleven years later they have just been featured in a documentary that premiered in March at the South by Southwest film conference.  The film was recently sold to Netflix, and I for one can’t wait to see it.  They also have a national tour coming up.  Below are links to an article about them in the New York Times, and a YouTube video of them at work.  Enjoy! 

http://well.blogs.nytimes.com/2016/04/28/aspergers-are-us-offers-comedy-for-all/?emc=eta1

https://www.youtube.com/watch?v=Zd3n23-1QbE

PS  Drama lessons are a great outlet for your child or young adult with an autism spectrum disorder.   Who knows, maybe that will be your kid starring at a film festival someday?  This all reinforces the truth that we need to focus on young people’s strengths, instead of (or at least in addition to) their challenges.  I know personally that theater can save a kid’s life, but your kid’s talent may lie in ceramics or jazz dance or soccer.  What matters, truly, is that each child has a place where he can shine and feel good about being himself.
 

 

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Gifted and a Disability:  The Concept of 2E
 May 15, 2016

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

Does your child have a high IQ, and also a disability like ADHD, sensory processing disorder, OCD, or autism?  “2E” or “twice exceptional” is a new buzz word for these children, and they have some unique needs.  Another common term is GT/LD, or gifted and talented/ learning disabled.  Let’s talk a little about who these kids are and what we can do to support them. 

The concept of “gifted education” has been around for a while.  Very bright students benefit from services such as above grade coursework, differentiation in general classes, specialized pull-out programs and individual acceleration to keep them motivated and on an appropriate track in school.  Gifted education is often provided through the special education department of a school district, but it is regulated differently state to state.  There is no widespread agreement on definitions in this area, but most sources consider such students to be in the top 2 percent of the population, or above a 130 IQ.  

Young people with disabilities often have more than one challenge.  I recently saw an interesting article that suggested ADHD as a “foundational disorder” that frequently has other conditions attached.  These disorders include a variety of conditions such as learning disabilities, Tourette’s Syndrome, autism spectrum disorders, and/ or apraxia.  

But we are talking now about youngsters who are gifted, and who also have a disability of some kind.  Twice exceptional education was first discussed in education in the 1970’s, but it is still a rarely discussed issue.  It is hard to get a valid prevalence for these kids, because their exceptionalities can vary so widely.  Some sources quote figures ranging from 300,000 to 360,000 in the US, which is somewhere around 0.5% of the total number of children under 18 years of age.  My guess is that this is an underestimate; it has always been the case that once a child is diagnosed in one system (like mental health or developmental disabilities), it is more difficult to get them seen, treated or diagnosed in another system.  Just as it is sometimes difficult to get a child with an intellectual disability diagnosed and treated for depression or anxiety, so too I believe that a child with autism or ADHD is less likely to be identified as gifted and educated accordingly.  

Even for the students who are identified as twice exceptional, resources are scarce and teacher education is slim.  Frequently students who are very bright have trouble getting a 504 or IEP, because they “are not significantly impacted educationally.”  In reality, this student who should be getting A’s is getting B’s or C’s, and the school personnel perceive “average performance” as acceptable.  B’s are just fine if the child is achieving to his potential.  They are not fine when that child has a 140 IQ but can’t focus enough to turn in assignments or finish a test.  They are not fine when the child can play symphonies or do complicated engineering hands on projects but turns in written work that is too messy to read.  Splinter skills are common with these kids too, meaning that there are still some areas of excellence In performance, while they struggle in other domains.  It is not uncommon for a 2E kid to have 30 or 40 point discrepancies in their diagnostic and IQ testing across skill areas. 

While state and federal mandates are focusing more attention in recent years on gifted education, 2E is not yet an area of focus in our nation.  Teachers rarely get training in how to support these students, and districts usually do not have a plan, department or game plan for these frequently misunderstood kids.  There are only a handful of school programs in the country that offer a curriculum for twice exceptional youngsters. 

Students who are 2E often have superior vocabulary and advanced ideas and opinions.  They can be highly creative and have highly developed interests that may not be related to school subjects.  They may have senses of humor beyond the understanding of their chronological peers.  Yet at the same time they often have poor social skills, difficulty with “executive skills” like organization, difficulty with written assignments, and/ or they are highly impulsive. 

Twice exceptional students need accommodations that allow them to compensate for their challenges, at the same time that they are receiving enrichment for their strengths.  While diagnosis of their disabilities is often delayed because these kids can compensate for many of their challenges in their early years, they do in fact need support.  

Appropriate interventions for the twice exceptional student address his academic and social/ emotional needs; his strengths and his challenges.   It is hard to generalize as each child who is twice exceptional is so very different.  However, it is key that interventions include both domains.  Often this student needs enrichment in his favorite areas to keep him motivated.  At the same time, he may need a wide variety of interventions similar to those that a student who has the disability but is not labelled as gifted would need.  In addition, these kids are foolers.  He may compensate for the disability quite well because of his intelligence, and therefore mask the problem.  He is probably a good salesman who can “talk his way out of” most situations.  

Common Interventions: (these are just a few examples)
 

Enrichment activities that are high interest

Talent development (music, art, theater, robotics, etc.)

Pull out for enrichment and for support in challenging areas

Choice to present orally or by making video, project, etc.

Option to request breaks when anxiety is high

Accommodations like standing during work, using voice recognition software to write, preferential seating etc.

Visual supports (written schedules, scripts, color coded filing systems etc.)
 

Want to learn more?  My favorite resource is 2E: Twice Exceptional Newsletter.  It offers some complementary resources at its website, and the quarterly newsletter is worth the subscription cost.  They also have monograms on specific topics/ disabilities that you can purchase.

www.2enewsletter.com 

In addition some resources on gifted education and gifted children have some information on 2E children.

Here are some other good resources: 

www.wrightslaw.com (specifically for 2E) 

AEGUS (Association for the Education of Gifted Under achieving Students) http://aegus1.org/about.html

SENG (Supporting Emotional Needs of the Gifted)   www.sengifted.org

Bright Not Broken: Gifted Kids, ADHD and Autism by Diane M. Kennedy and Rebecca S. Banks.

Teaching Gifted Students with Disabilities, Ed. By Susan K. Johnsen and James Kendrick

This is a rich, and under-researched topic.  There are many, many students out there who are diagnosed as one end or the other, but not both.  And even those who are diagnosed as twice exceptional often do not get the corresponding services.  Much remains to be done!
 

 

 

***  The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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An Insightful Speaker:  Matan Koch on “Universal Inclusion”
 May 8, 2016


Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

Sometimes the opportunity to sit and hear a good speaker is just what I need to inspire me and to give me an opportunity to put my work in perspective.  This week I was fortunate to hear Matan Koch speak.  Mr. Koch has a long pedigree, including Yale University, Harvard law school, and a term as President Obama’s appointment on the National Council on Disability.  Mr. Koch is a speaker, educator, consultant and attorney, as well as an advocate for the inclusion of individuals with disabilities. 

What does “universal inclusion” mean?  It is a mindset; a belief that we all need to take a proactive approach to welcoming individuals, regardless of their unique needs.  He suggests first identifying possible obstacles, then identifying strategies, and doing all of this before the individual with special needs shows up and experiences defeat.  This means making our organizations or businesses with ramps, listening devices, or whatever is needed to include as many people as possible.  It is the “if we build it, they will come” mentality, instead of the “if they come, then we will install it” way of thinking.   

Although Mr. Koch’s talk was primarily focused on adults, I can see the application of “universal inclusion” to schools and community settings for children.  An example would be a teacher who starts the year with visual schedules and multi-sensory learning options, regardless of who her students will be.  Or a music teacher who teaches basic sign with the songs in her classroom.  Or the community center that has the ramp to the stage up all the time, and not just on request. 

To quote Matan Koch, “Everyone has things that they are good at and things that they are not. “  Each of us bring strengths to a community when we join it, even though we bring challenges too.  If we do not open the doors wide enough to include everyone, then we will never know about all the wonderful contributions that those people could have brought.  

A wise man.  We can all learn from him; I know I did.  For more on Matan Koch, here is his website. 

http://www.matankoch.com/

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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On My Mind:  Consequences
 May 1, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

I have the greatest respect for teachers and administrators who are “in the trenches.”  They are some of the most talented, hardest working people I have ever met.  One of the best parts of my job is watching good teachers and administrators balance all their responsibilities and deftly help the children they serve.  Unfortunately there is often too little training for them in applied behavior analysis, and too little support provided in this area for when the crisis happens.  And “consequences” are a huge part of that training.

Let’s look at the issues here one at a time. 

First of all, we know that the end of the year can be difficult for a kid who needs structure, who finds special events over-stimulating or anxiety producing, who finds standardized testing stressful, and even because of an increase in allergens that leaves him feeling unwell.  Many things can increase the rate of behaviors.  Any one of these things could cause additional anxiety in a child, and that anxiety often leads to inappropriate behaviors. That does not mean that he did it on purpose to push his teacher’s buttons, or that he did it because he thinks he can get away with it.  Instead, it means that his anxiety level is too high. 

Behavior 101:  most behaviors in children are either to get more of something or to get away from something.  That something can vary widely, from attention to sensory stimulation, from food to more time with a particular toy or activity.  Behavior analysis is like a detective case; you have to figure out 1) exactly what behavior you are looking at, 2) what the something is that is impacting the behavior, and 3) whether the child is attempting to get more of it or to get away from it. 

I agree that we all need to learn that our behaviors have consequences; that is part of growing up.  However, there is a reason we call it “individualized education.”  One kid’s enticement is another kid’s aversion.  In other words, what is a negative consequence for one child, and hence makes it less likely for the behavior to happen again, may be a positive experience for the next child, and therefore makes him want to do the behavior more.  Let’s look at an example. 

Marcie craves the attention of adults and peers.  She loves the social aspects of the classroom, and can get carried away.  When she is too physical, teachers remove her for a few minutes to a room across the hall.  Because Marcie wants to be in the classroom and does not like being removed, this consequence makes it less likely that she will get physical again.  She is learning what she has to do to stay in the room. 

Sarah, on the other hand, finds the noise level in the classroom very difficult to handle.  When it gets loud she will try to cover her ears, and she sometimes escalates to aggression.  Because Sarah is escalating, staff members will remove her from the room.  However, Sarah’s behaviors are not decreasing, in fact they are getting more frequent.  Why?  Sarah is learning that if she hits or pushes, she gets out of the overstimulating environment that she does not want to be in. 

OK, the takeaway here is that removal from the room may be rewarding for a child.  That doesn’t mean that a stressed kid in meltdown should be forced to stay in the room.  It does mean that you should catch her before the meltdown and offer removal until calm for an appropriate request to take a break.  Teach her that she can earn the removal for a positive behavior.

 

Think about suspension.  When a child is suspended, it is usually more of a punishment for the parents than it is one for the child.  If a student doesn’t enjoy being at school or he finds it very stressful, and his inappropriate behavior results in three days at home, the most likely outcome is that he does the behavior again so that he can get the same result.  So, if he has enough control over his behavior to determine when it happens, (and that is iffy for many special education kids), a suspension is actually reinforcing the behavior and making it more likely rather than less likely.  

The moral of this story is that if your goal is to improve his behavior, you have to first analyze the reason that it is occurring.  What is the thing that is increasing the behavior?  If it is attention your “consequence” will be much different than if he is seeking to escape the situation.  And the best way to change the behavior is almost always to prevent it in the first place by changing the environment so that he uses alternative, more appropriate behaviors to reach his goal.

The analysis of behavior is all about figuring out what is unique to each person in terms of what he or she wants, and what he or she wants to escape.  That is why “individualized education” is so crucial.  Standard behavior plans for a district or school do not address this, and although they may protect the staff members and peers by removing a child, they often do not impact the behavior in a positive direction.  The idea that children need consequences is not accurate; in fact children need consequences (and more importantly interventions in advance of behaviors) that work for that child. 

This is a tough time of the year for many special education students.  School is less structured during the last few weeks, with many schedule changes and additional free time that can be hard to handle.  Our wonderful teachers, who have worked hard all year, are exhausted.  Everyone is in “countdown mode.”  Taking a moment to look at the consequences being used for the students will help all of you to make it to the end of the year successfully! 


 

 

***  The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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​​High School and the “Different” Kid:  You Are Not Alone
 April 24, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

As I posted the joyous pictures of my youngest kid with his friends at Prom on to Facebook this week, other parents were being punched in the gut by the absence of pictures of their kids.  As my son smiled ear to ear and cherished those moments that stay with you forever, there were kids who did not get asked, did not feel comfortable asking, and did not feel welcome attending their school event.  That feeling of exclusion also stays with you forever. 

I have been that other parent, and many of you have too.  As we celebrate graduations, proms, and exciting transitions to new adventures, I want to take a moment and remember that for some teens, this is a particularly difficult time of year.   For some parents, it is yet another painful reminder that your kid is different.  And in many high schools, different is not an acceptable thing. 

Parents who have kids with special needs go through the same grieving process that one experiences when a loved one dies.  In their cases, it is the death of a dream.  The dream of watching him or her play T ball, of watching them go off on a first date, of taking them to college.  The dream of seeing them in a Prom dress or wedding dress, of having a group of her friends who want to hang out in your basement, of playing with grandchildren.  The grieving process is different for each of us, but for almost everyone, life cycle events throw you right back into the grief again.  We may be thrilled for our friends and their kids, but watching the “typical” kids experience the joys of Prom or graduation is difficult to say the least. 

If you are reading this as you live with the hurt, know that there are some of us out there who get it.  As we send our kids off to be with their friends, we remind them to try and include kids who are struggling.  We pray that we have raised them to be kind, and to be inclusive.  We remember how it felt, and our hearts go out to you.  You are not alone.   And it does get better.   

 

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Book Review:  A Memoir on Family, Autism, and Cultural Differences
 April 17, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

There is nothing I love more than a good read, and when it combines my professional and personal interests I can’t resist.  This one had autism, a culture I wanted to learn more about, and family dynamics that felt very authentic to me.   It’s a great read as well.  

The book is This Is Not A Love Story:  A Memoir, by Judy Brown.  I found this book fascinating.  It is the story of a family living in the world of Hasidic, or ultra-Orthodox Judaism, as seen through the eyes of their young daughter.  She explores her parents’ relationship, the effects on her and her family of having a brother with significant impairments both before and after diagnosis and treatment, and her family’s resulting interactions with the larger Hasidic community where they live.  

I found the narrator, who is the author talking about her childhood, extremely compelling.  She is not always likable, and I think that makes the story of her family relationships all the more believable.  Just when I was really disgusted with her, and was ready to give up, she began to grow up and see things from a more mature perspective.  I am not, like some of my book lover friends, always in need of a happy ending.  However, I enjoyed the resolution of this story; it gave me hope.  And that’s a good thing to have these days! 

Enjoy this very thought provoking book. 

 

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.

 

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Quick Help for Harried Homes:  Everyday Behavior Management
 April 10, 2016

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

Here are some basic behavior tips that help with most kids most of the time… there are of course no guarantees! 

Say this:  “If you do fifteen minutes of homework, then you get a five minute break!” 

Lock up your most powerful rewards.  Dole them out when YOU are ready.  Remember that it won’t work as a reward if he can access it any time he wants. 

Use a kitchen timer.  Set it for a reasonable amount of time, with a break promised at the end.  Sometimes just being able to see that there is an end in sight will help him stick with the task or assignment.  

No matter how bad of a day he is having, use three times as many complements about his behavior and rewards (like high five’s and stickers and praise…) as you use redirections or criticisms.  The worse the behavior, the more he needs the positives to turn it around!  

Have a daily schedule for home posted on the fridge on a white out board.  Make sure he sees it each morning and after school.  Include homework, snack, breaks, and any evening activities.  If there is a change, change it on the board, and tell him that you are making the change. 

Make the house rules for good behavior very clear by writing them down and posting them.  Keep them very concrete and specific.  Include what happens if you don’t’ stick to the rules… the loss of an evening privilege?  Make sure it is no more long term than that.  Then stick to the rules!  Here are a few ideas:
 

·         It is never OK to hurt anyone else or to touch them without permission.

·         It is OK to disagree with mom or dad about an instruction one time.  After that, the rule is that you have to           do it.

·         Only adults can change the rules on this list.  If you want to make a change, it is OK to discuss it.
 

Remember, consistency helps.  Talk with your child’s teacher, sitter, and your significant other.  Work on responding in the same way across settings and people.

Give yourself a time out!  If you are losing your cool, put on a movie and lock the bathroom door until you can pull it together.  Hand the kids off to a friend (who will do the same with you when they need it) and go for a walk or take a bubble bath. 

 

Hang in there! 
 

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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A Simple Request:  When Someone Has a Hidden Disability
 April 3, 2016 


Nancy Magnus Kopnick, Ph.D., B.C.B.A. 



I have a hidden disability.  You can’t tell that I have degenerative disk disease, but I cannot lift my own bags onto the conveyor belt at the airport or into my rental car.  I could really hurt myself if I lift more than 15 ish pounds  No big deal; I have lived with the condition for twenty five years.   One adapts.  No big deal.

Except for days like I had this week.  When I told the United Airlines representative at the baggage check that I had back problems, and asked her if someone could please lift my bag onto the scale, she said no. Not “you will need to wait for someone to become available.”  Not “I have to call someone because I can’t do it, but I will get them.”  Just a flat “no.”

 It is not the first time I have experienced this, but I still am shocked and embarrassed when it happens.  It puts me in a difficult situation.  Am I supposed to then lift the bag myself?  That could result in surgery.  Not gonna happen.  Does she think I am faking?  Maybe, as I don’t look like I have a disability.  But I don’t know why anyone would want to fake this.  What was I supposed to do? 

When I get in these situations I have to rely on the kindness of strangers.  Sometimes someone overhears and volunteers.  Often though I have to pick some stranger out and ask them to please help me.  It is humiliating, and there is always the possibility that they will say no.  This time I turned to the gentleman behind me in line and basically begged; I was pretty close to tears by then.  He lifted the bag, and I just kept saying thank you.

Remember when "service" professions were service professions?  When the goal was to help people?  Travel has become a series of trials.  Do I check my bag and deal with lifting it before and after?  Do I carry on and deal with the aisle that I can’t roll it down?  The steps that go up to the plane?  It just keeps getting harder to travel alone.  Its not that my back is getting worse, but there are more and more obstacles and less and less help.  


Finally, there’s the strangers that I have to turn to.  I used to make eye contact with someone at baggage claim, and then ask for help.  Now I can’t make eye contact, because everyone is on their phone.  So while people still say yes, it is much more awkward. 

This is not really about me.  I am healthy, living a full life, and only a little inconvenienced by these situation.  But here is my concern.  There are so many people out there, at the airport and in every community setting, who experience ten times the challenges that I do.  Many of them do not look the part… no cane or crutch, no wheelchair or support animal.  If I am struggling to travel, what is happening to them?  Where is our sense of empathy?  Our basic human kindness?  Think of  the thousands of people who, on a daily basis, get a “no” from the woman behind the counter.  Not “how can I help you?”  Not, “let’s figure this out together.”  Just a humiliating, infuriating “no.”  

We all need to take care of each other. 
 

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.

              

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Ways the World of Special Education Has Changed
 March 20, 2016

Nancy Magnus Kopnick, Ph.D., B.C.B.A. 

OK, I am going to sound really old right now.  Sometimes the truth hurts!  

Twenty years ago we said there was no money.  There still isn’t any money, in fact budgets seem tighter, but wow, have priorities in our world changed.  When I started in this field there were still state institutions (told you I would sound old), and as horrible as they were, that’s where the money went.  Also, in those days the Ohio “169 Boards,” today known locally as Developmental Disability Services, that provided services to children and adults with developmental disabilities, served a preponderance of the folks in our communities.  Today the children are back in their local districts or in small private schools.  The adult services have dwindled, and are in danger of closing all together.  Laws have changed, funding streams have evaporated, and there are not adequate adult services to take their place.

When I began in this field specializing in children with developmental disabilities, anyone who had been identified with autism had severe deficits.  Many were non-verbal, and we taught them sign language as an alternative.  “Picture Exchange” was not established, technology was something in the Jetsons, and Aspergers was unheard of.  All those folks who now are diagnosed with high functioning autism were called quirky or odd, or were given a diagnosis in the mental health world. 

Back in the “old days” all my students and campers who did poorly on IQ tests were called “mentally retarded.”  Like the terms “feeble minded” and “imbecile” before them, these labels became pejorative.  So then we said “intellectually disabled.”  Now fewer and fewer children are being given this label.  Instead we say that students have “developmental disabilities” or “autism spectrum disorders,”  although these terms are not synonymous with “intellectually disabled.”   But it is politically correct, and helpful for funding streams, to put students in the autism spectrum disorder area.  For some the diagnosis is accurate.  For some, it is a way to put a round peg in a square hole.  

Obsessive interests were a problem when I was starting in this field.  My students were addicted to trains, or planets, or maybe TV …   None of them spent time on screens because we didn’t have them.  Obsessive interest in trains then required you to communicate to those around you in order to get to the trains, to talk about the trains, to play games about the trains.  Now that same kid or adult would use his phone or computer to google trains or to play a game on line about trains.  No other people required.  No communication needed.  The interests are still there, but it is easier to become addicted, and there is less communication required to sustain them.  

When I began in the field of special education, it was already the law (Public Law 94-142) that schools serve individuals with disabilities.  We wrote IEP’s with goals and objectives.  However, there were few mandates to test and quantify the education achievements of typical children.  As a result, we did not have to compare curricula or justify not teaching the typical lessons.  Now teachers must teach benchmarks that come from the general education classroom, adapting it to their students and demonstrating how it is achieved.  For the most challenged students, the result is a complex “portfolio” system with documentation and examples of how they taught the content to the child.  Sometimes this is a good thing, and sometimes it results in non-meaningful, fairly ludicrous tasks and tests.  And all of it leads to mounds and mounds of paperwork that is driving skilled special educators out of the classroom. 

When I began in this field we were taught that there was a time and a place for the use of aversive behavioral interventions in the special education classroom when dealing with the most severe situations.  I am not proud of the interventions that I used in my early years, although they were always done with the best interests of the child in mind.  While aversives still exist, the state of the art is positive behavioral support with extensive approval systems in place for any aversives, designed to protect students from over-zealous educators or professionals.   Some things do get better. 

Twenty years ago I was a spry young special educator seeing the world through rose colored glasses.  I had good instincts, and a ton of energy.   But I didn’t always get it.  Now, with twenty five-ish years under my belt, I may have more aches and pains, but I have a wealth of experience to share with the new and spry special educators coming into the field.  And I don’t know that it is better or worse, but it is certainly a different world than it was.  It will be exciting to see where we are in another twenty years.

Off next week because of spring break.  Back in April!

 

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Surviving “Transition” Out of High School

 March  13, 2016 


Nancy Magnus Kopnick, Ph.D., B.C.B.A. 

The transition out of high school to whatever comes next is scary for parents of typical kids, but absolutely terrifying if your son or daughter has a disability.  Even if high school has not been ideal (and most parents I know would call that a huge understatement), our fear of the unknown for our kids makes this a tough one.  There is no clear path for young people with learning, social or emotional challenges.  The laws that protect students with a 504 or an IEP no longer apply in the adult world.  There is no safety net in college or work; no yearly meeting and no guarantee of accommodations.  

In addition, figuring out what he needs can be challenging.  Most of our kids, by virtue of their disability, are easily two to three years behind socially and emotionally.  Still, if they are on diploma track school is over after senior year.  While some may have the extra years until age 21 or 22 (the specifics of that deadline vary by the state) because of their eligibility for an IEP under the law, their peers are moving on.  There may not be an appropriate program for them at the high school, and even if there is, it is hard when typical peers are moving forward.


Here are some areas that you should be looking at with your child and their team in order to assess his strengths and challenges, and to help you figure out the next step. 

Social:  Are his social skills at the level of his peers?   Does he need support and “practice” to be successful in his next phase of life? 

Emotional:  Can he recognize and understand his own emotions, and the emotions of others?  Does he have emotional control if something unexpected goes wrong? 

Organizational: Can he initiate assignments, papers, studying?  Can he break down big projects into little steps?  Does he know how and who to ask for help?  Can he get places on time?  Remember to go at all? 

Independence:   Can he use public transportation or drive?  Are his daily living skills appropriate for a college student or an adult at work?  Can he problem solve when something at work or school goes wrong?

Academics:  Expectations at college are much higher than in a top tier high school.  Professors don’t remind you to turn things in, and they don’t usually lecture on the material they ask you to read.  They may never mention an assignment if it appears in the syllabus.  And although many schools have academic support available, no one will make your kid schedule appointments or go to them.  He has to take the initiative.  Is he ready?

Vocational:  Most people who lose jobs do so because of social skills problems, rather than their work product.  How is his personal hygiene?  Can he get along with others at break?  Is he respectful to those in charge, even when he disagrees?  Will he get there on time? 

Importance of transition assessment:  Obviously there are many issues to a successful transition.  For some students it is helpful to have a transition assessment conducted through school in his sophomore or junior year to see what areas need to be targeted before he moves on.  There are folks out there who specialize in this area.  Ask for this support if you think he needs it. 

Finally, remember that “next is not forever.”  He does not have to have the perfect job next year.  He will probably change jobs a number of times, just like typical folks do, and he will mature and learn along the way.  Likewise, a year in a local junior college does not mean that it is the perfect fit or that he will never be ready for a four year university.  Each step in the journey is a growth opportunity, and there are good and bad aspects to each program.  As parents we so badly want to fix it for our kids; to make it easy.  Yet, at some point, we can’t and probably shouldn’t do that anymore.  And that is really hard. 

Hang in there!

 
 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Tales from a Consultant
 March 6, 2015 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.

 

I love the kids that I work with.  They are creative and unique.  Some of their behaviors over the years have been real adventures for me, and so have my behaviors in the process, so I thought I would share a few with you. 

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I received a call from a parent many years ago.  Her son with autism had a disturbing new behavior; he was urinating in light sockets.  He wasn’t hurting himself, so we assumed he was stopping and starting his stream, but he was producing a light and sound show, much to his delight!  It was clear to us that he was finding tremendous sensory feedback in the experience… the sound of the crackling sparks, the sight of the electrical sparks, and possibly their smell.  What to do?  We cut the power on the switches temporarily.  When there was no feedback our young electrician lost interest quite quickly, and we were able to turn the power on again within days.  He moved on to other  interesting behaviors, his mother was relieved, and I never forgot him!


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I met a family that lived in an urban environment, and they walked everywhere.  The young man with autism in the family was huge for his age, and significantly overweight.  He was a happy guy, but periodically, when crossing the street, he would just sit down in the middle of the road.  We couldn’t lift him!  We also couldn’t ignore the behavior even if it was for attention.  Through a program using positives for good behavior we were able to gradually reduce the behavior.  Still, I can close my eyes and see this guy contentedly sitting in the crosswalk while the world waited on him.

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I have a shoe problem in the work that I do.  I never seem to be wearing the right shoes for that day’s adventure.  It is probably my fault for hanging on to the professional attire thing, but my shoes are pretty practical… low heels, easy to move in.  

Still, that didn’t help on the day that I visited a family where the young lady would never do the challenging behavior when I was there.  The parents asked me to observe through the window.  I went outside, and sank into mud that was like quick sand.  My feet kept sinking lower and lower.  I did manage to observe through the window, but the shoes were never the same. 

Another pair of shoes bit the dust when I got to a school to observe, and the teacher informed me that it was “community day” so we would be walking to the post office.  It was raining, and there were huge puddles everywhere.  It was cold too, and the further we went the wetter my feet became.  I couldn’t feel my toes at the post office, and we still had to walk back.  

One time the shoes were OK, but the rest of the outfit didn’t cut it.  I was working with a family when their little guy “eloped” as we say “in the biz” from their backyard.  Each of us went in search of him in a different direction, but somehow I am the one who had to climb over a wire fence.  As it grabbed and ripped my clothes I remember thinking, maybe I should have worn jeans and a t shirt…  Happily, he was found quickly, but I had to climb BACK over the dang fence!

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This one shows my age.  I have been doing this work so long that when I started supervising staff members in family homes, we had (ready for this, young people?) no GPS, no Mapquest, and NO cell phones.  If a staff member needed me he or she would call the answering machine that we kept on at the office.  Most of our work was after office hours, and I would call the answering machine from the homes of my clients every couple of hours to check for any messages.  I knew their schedules, and could call the number of the family with whom they were visiting by the time I found the message.  It didn’t always work.  We sure could have used the technology of today.


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 I was recently reminded of a night that I spent on a family’s staircase, trying to observe their daughter’s nocturnal behaviors!  Very uncomfortable as “beds” go.  I am still good friends with this mom, even though I don’t think my overnight observation was much help.  But it was an adventure.
 

 

 

***  The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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ADHD and Girls
February 28, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

Have you noticed that most of my posts use the word “he” in examples?  It isn’t a random decision.  The numbers of young people diagnosed with attention deficit (as well as a number of other developmental disabilities) are disproportionately male.  

Let’s back up for a second.  First you have to understand that the categories are confusing.  While the umbrella label for this recognized disability is Attention Deficit Hyperactivity Disorder, not every child with this diagnosis is “hyperactive.”  Since 1994 the official label has been ADHD, but children who fall in this category may be predominately hyperactive, predominately inattentive, or a mix of the two. 

The latest numbers that I have seen indicate that one out of ten or eleven children are being diagnosed now with some form of Attention Deficit Hyperactivity Disorder.  That number seems to be somewhat stable, at least for now.  Within this population however, the existing research says that three or four times as many boys are being diagnosed as girls. That research however, may not be up to date. 

Numbers are a tricky thing, and I am not at all sure that the latest ones in this area are accurate.  It is important to understand that girls diagnosed with ADHD are more often in the inattentive end of the continuum, and less likely to be “behavior problems” that stand out in a classroom.  Like our inattentive boys with ADD, the girls may be the kids in class who are quietly staring out the window, who have trouble staying with the lesson, who lose things or who cannot seem to stay organized.  If you send her to her room to get her backpack, she will likely get in there and forget why she is there.  It is not noncompliance, but it sure can look that way.  And for professionals, the subtlety of ADD that is inattentive is much harder to recognize.  

Girls who are “hyperactive” are often labelled as loners or tom boys, and not identified as having ADHD.  In addition, girls may be more likely to have co-existing challenges such as eating disorders, depression or anxiety, particularly if unmedicated.  Women seem to be identified much later in life than boys, and sometimes mothers self-identify when their children (boys, often), receive the diagnosis. 

All this brings us back to the fact that girls are probably harder to identify, and therefore less likely to be counted in the statistics.  Of course, that means that there are probably many young women out there (and adults as well) who are struggling with ADD without the supports they need.  And there is very little research in existence on the unique issues of females and ADHD. 

So what can you do if you think your daughter has undiagnosed ADHD?  First, talk to your pediatrician.  He or she can start the process of evaluating her, although some pediatricians refer on to colleagues with more expertise.  If you live in a city with a well known diagnostic center for children, consider having her evaluated there.  Children’s Hospital Medical Center in Cincinnati has a program that specializes in ADHD, and offers expertise that will be helpful.  It is also more likely to be covered my your health insurance. 

Got the diagnosis?  Now you need to talk to school about a possible “504 Plan.”  A 504 provides supports at school like preferential seating, extended time on testing, or other accommodations. 

While you are looking into diagnosis and school support, remember that there are practical ways to help her at home.  Make lists.  Break assignments into smaller chunks.  Ask her to repeat your instructions back to you to see if she caught them.  Do your homework too… there are lots of terrific books out there on ADHD in general.  Not so much on girls, but CHADD, the national advocacy and support non-profit for families, is a good place to get started. 

http://www.chadd.org/Understanding-ADHD/For-Adults/Living-with-ADHD-A-Lifespan-Disorder/Women-and-Girls.aspx 

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Conference Next Week in Cincinnati for Families of Special Needs Kids

Friday March 4th is the Empowering Families Symposium at Xavier University's Cintas Center.  There will be speakers, breakout sessions, tons of resources for parents, and I will be at a vendor table as well.  Come say hi!  More information can be found at the following link:  https://www.regonline.com/empoweringfamilies2


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Puberty and Autism:  The Questions You Are Afraid To Ask
February 21, 2016

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

Puberty happens to everyone.  Sorry parents.  And it scares us as caregivers.  But if we can separate our emotions from the facts, it helps us to problem solve our way through a natural, healthy process.   Here are some of the questions I am asked most frequently when I am wearing my “Dr. Ruth” hat. 


Dear Dr. Nancy:  My pre-puberty child is spending lots of time rubbing his “private parts” against things.  Is that normal?  What do I do? 

First of all, most typical children explore their genitals at a young age.  They just manage to be more clandestine about it than kids with ASD’s.  And yes, it is totally normal.  For an older child, pre-puberty, this is simply another sensory thing.  If you can take the emotion out of it from your point of view, it feels good.  Your child, who is probably focused on sensory experiences, has discovered a very powerful one.  Like any other self-stimulation activity (i.e. finger flicking, rocking), you can either ignore it (if it is happening in private), distract him, and/ or replace the behavior with another sensory activity that is more appropriate.  It is important not to make a big deal of the behavior, or to punish for it.  Remember that lots of attention will lead to increases in the behavior, not decreases. 


Dear Dr. Nancy:  My daughter with autism is going to start her period soon, and I am panicking.  Help! 

OK, take a breath.  This process usually goes much better with young ladies with ASD than we expect it to.  The key is to treat it like any other skill, and to teach the steps of the process.  Use the same steps each time, and reward her for following them.  There are some great curricula out there to help you.  Here is my current favorite.  

Taking Care of Myself:  A Healthy Hygiene, Puberty and Personal Curriculum for Young People With Autism  By Mary Wrobel. 

This book, by the way, will help you with specific strategies for everything from nose blowing and using toilet paper, to personal safety and masturbation issues. 
 

Dear Dr. Nancy:  My 16 year old strips in public.  What more is there to say?

This is generally NOT a sexuality issue.  Although it is possible that your teen will masturbate when his clothes are off,  it is much more likely that he simply does not like the feel of the clothes and /or enjoys the feeling of being naked.  He is not trying to be an exhibitionist, and probably not doing it for attention (although I am sure he is getting plenty!)  Think behaviorally, not in terms of cultural norms.  You need to make it worth his while to keep his clothes on.  Is there a material that is bothering him?  Would boxers be more comfortable than briefs?  Is he less likely to strip in jeans than in sweats?  How about a reward twice a day for staying dressed?  Use a visual system so he can see what he will earn and what he has to do to receive it.  Remember, the more “big” attention you give when it happens, the more likely it is to become an attention seeking behavior as well.  Keep your emotions in check and make a big deal of something else if you can!


Dear Dr. Nancy:  My 18 year old is masturbating in class, and the teacher is really upset.   How can I help?


Most teachers of this population understand that masturbation is a highly rewarding self-stimulation activity for our folks with ASD.  It is internally rewarding, and  for some people with autism spectrum disorders, it is the only way that they have found to effectively meet their sensory needs.   Most of the time when I get called in to a classroom where this is a problem, it is because the student is not being kept busy enough.  If he is being stimulated (no pun intended!) he is much less likely to masturbate in public.

Having said that, it is very important that adolescents be taught, systematically, that there is a time and a place for private behaviors.  You can help by establishing a time and place system at home, and being consistent.  Encourage him to appropriately seek that private place when he feels that he needs it, and avoid negative associations.  Then when you are not at home and he starts the behavior, calmly remind him that touching himself there is something we do at home in our room when no one else is with us. 
 

 

There are many issues of concern in this area, and I have only addressed a few here.  More are covered in the book referenced above, and many other great resources out there.  The key is to remember that these are normal, healthy sensory behaviors that need to be treated like any other skill deficit.  Your child can be taught the right way to approach the issue.  No need to panic!
 

 

***  The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Thoughts About “Stimming”:  The Ethics and Practicalities of Stopping a Behavior
February 14, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.



I was recently asked by an attorney about how to handle an adult client on the stand when he “stims.”  Stimming (short for self-stimulation), is also known in my jargon filled world as stereotopy.  What we are really talking about is that repetitive movement, finger flicking, rocking etc. that folks with autism spectrum disorders use frequently as a sensory activity or to lower their anxiety.  It comes in many forms, and can be very subtle.  Stimming can be through eye movement, stealthy fingering of an object in your pocket, or using a certain pattern as you walk down the hall that others don’t even notice.  Often, however, stimming is visible and atypical looking.  Sometimes stimming can be harmful, as in the case of self injurious behavior like head hitting.  How you respond to a person’s self-stimulatory behavior depends on who it is, what type of stimming they are doing, and on the environment.

Let’s get the basics out of the way first.  Any adult who “chooses” to stim, assuming that he is not harming himself or others, has the right to make his own choices.  You can, if you have a relationship with him and you are concerned about his best interests, make a suggestion.  It’s a free country.  But he is likely to ignore you, and your attention to the issue may even increase the behavior.  And remember that he is experiencing a powerful urge, like having an itch that you are telling him he cannot scratch.  Not really a choice, right?

 With children, we sometimes choose to teach them ways to suppress or channel the stimming, in order to make them more socially normative in our world.  Frankly, that only works to a limited degree with many people.  What we can do is help them find more age and environment appropriate alternatives that meet a similar sensory need. 

Sometimes children or adults pick a time and place to stim that is awkward, or that interferes with other people’s activities.  Loud stimming at a Broadway show, for example, may be a problem.  So here is the trick… if you want him to stop the behavior he will need to replace the behavior.  It is not something he can just stop doing; he needs to do something that provides the same feeling of release (i.e. scratches the itch somehow).  The annoyed Broadway visitor who yells at him to stop will just increase his anxiety.  However, if you can plan ahead and offer him a quieter or less obtrusive option, you may be successful.  Perhaps he can have a fidget to hold, or chewy candy, or he can bring a small cushion that gives him enough sensory input to get through the show.

My lawyer friend said that it can be damaging to a client’s testimony to stim on the stand.  That may be true.  On the other hand, if he has a diagnosis of autism spectrum disorder, it should be easy to document that and to show the court that the individual is not being disrespectful.  Being a rocker does not make you less competent.  I know physicians, lawyers and clergy members who never stop rocking or leg bouncing during meetings.  Most of the students I observe in high schools are stimming somehow, whether they play with their hair, twiddle a pen or squirm.  Isn’t it strange that our standards are higher sometimes for people with disabilities than they are for the supposedly “typical” folks? 

Similarly, the client may not be able to maintain eye contact.  While I understand that a jury may interpret that as shifty or untruthful, most of my friends who have these habits are quite capable of explaining their own needs and challenges.  So maybe a better strategy is to ask him to explain why he is doing these behaviors, and what they mean in his case. 

Wouldn’t it be nice if the world would accept us all, in all our uniqueness, and judge us on what’s inside our hearts.  In the meantime, stimming can best be handled with respect and understanding.  Not the answer you were expecting.




 
***  The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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​Who Will Care For Our Aging Children When We Die?
February 7,  2016

Nancy Magnus Kopnick, Ph.D., B.C.B.A.

 

How many aging parents do you know who are still caring for their adult children because of intellectual or social challenges? I know many adults who have high functioning autism, are quirky, or are bipolar, who struggle to keep a job or to be successful socially in our complex world.  Sometimes these folks continue to live with their parents, and sometimes they rely on them for back up, whether that is advice, money, or medical emergencies.  But those dedicated parents are aging fast.  And some day you may be in their shoes.  Not all of our children can or will marry or have children of their own.  And so it will be our turn to worry, to spend retirement bailing out our adult kids, and to wonder what will become of them when we die.  Good and depressed? 

Here are some practical things that we can help those senior citizens to do (or do ourselves) to ease the burden and to prepare for the future: 

 

*Work with an attorney to set aside a trust and to plan financially for the future.  You don’t have to be rich to plan what happens to your money, and you don’t want to give it all to government when you die.  

*Worried about him getting access to an inheritance before he is ready?  Remember that folks with ADD, ASD and many other disabilities mature emotionally and socially several years slower than than their peers.  Perhaps your will should limit access until age 25 instead of age 21?  There are many ways to protect young people and still protect their dignity. 

*Do you have a Power of Attorney prepared for yourself?  How about a Living Will?  These are particularly important when siblings/ adult children may not agree, or if you are worried about who will make decisions on your behalf.  Don’t wait on this one… you can always change it later on. 

*Do you have a Power of Attorney for your adult child?  Does he have a Living Will?  If you are his “go to” you need to know what he wants in case of medical emergency, and you should have the legal ability to make decisions if you have to.  So talk to him about it, and help him to make it happen.  And discuss who will provide that support when you can’t anymore.  Perhaps a sibling needs to share those legal rights with you.  This can all take some time so start now.  

*Is he as independent as possible, or is he being enabled by kindness?  Does he know how to cook?  Does he do his own laundry?  Does he still let his parents do his grocery shopping?  Who makes the calls to arrange for the cable company to set up in his home?  We all need to learn how to negotiate the hassles of day to day life, but the only way to learn is to do it.  We do no kindness if we shelter him, because we won’t always be here.  So push him to get out there, one step at a time.  And then be there to teach him how to navigate the bumps when they happen.  

*There are agencies that support adults who live independently in the community, at the level that they need.  One of my favorites in the Cincinnati area is LADD, or Living Arrangements for The Developmentally Disabled.  They help folks to live in apartments or homes with the level of support that is appropriate for them.  Different agencies offer services for different populations.  Contact your local resources for more information.

*Build a circle of support for your loved one.  He needs more than a person with Power of Attorney; he needs a community.  Who will visit him and check with him when you are gone?  Who will he go to the movies with?  Who will he call with day to day issues, or just to say hi?  Mapping this out and formally asking friends to be a part of a “circle” will give him a better quality of life down the road.

*Pre-pay for your funeral/ burial services.  I know it is easier to avoid this, but the fact remains that it costs thousands and thousands of dollars when someone dies.  Give your adult child the gift of having to do as little as possible.  It is like an insurance policy… do it and then forget about it. 

*Write a letter of love and put it in a safe place, whether it is a safety deposit box or your sock drawer.  Tell him all the things you can’t say at the supper table.  Leave a legacy of support and love.  He will treasure it. 

I know that these are not things we want to face.  On the other hand, everyone will have to deal with them eventually, and what a gift you can give to your loved ones by planning now.  You won’t regret it.

 

 

***  The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Zika, Lead, and Anti-depressants During Pregnancy: 

Recent Headlines and Special Education
 January 31, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

There are some scary headlines lately.  As usual, I have some problems with how they are being reported.  While the Zika Virus and lead poisoning in Flint have long term consequences that are not being discussed much, the latest teaser on anti-depressants implies consequences without adequate research to back it up.  Let’s take these issues one at a time. 

The Zika virus is spread by a type of mosquito, and it is spreading rapidly in the Americas.  The World Health Organization says that “a causal relationship between Zika virus infection and birth defects and neurological syndromes [particularly microcephaly and Guilain-Barre Syndrome] has not been established, but is strongly suspected.”  The numbers are not promising; the virus is rapidly spreading.  Women in South American countries are being warned not to get pregnant, and there are no commercial tests for the virus, and no vaccines or treatments.  It is important to know that the virus is not spread by person to person contact, but only by mosquitos (similar to how malaria works.) 

Since the Zika virus is, at this point, primarily a problem in poor countries where women have limited options for birth control, it seems logical to assume that warnings to not get pregnant this year or next are unrealistic to say the least.  Those same women will have extremely limited options for therapeutic services when high numbers of children with microcephaly and other serious developmental disabilities enter the population.  These kids will have a variety of needs, with challenges that range from mild to severe and that manifest at different points in their development.  However, it is safe to say that their medical, educational, and therapeutic needs will be intense, lifelong and very, very costly.  Many nations will be unable to meet those needs.  And if the virus continues to spread, our country will also face these issues.

The tragedy that has unfolded in Flint, Michigan is hard to fathom.  Through a series of bureaucratic and governmental mistakes related to cost cutting, a generation of children in Flint have been exposed to high levels of lead.  The governor of Michigan has apologized, and promised to fix the problem.  Here is what is not being said.  You cannot fix childhood exposure to lead.  It is toxic, permanently damaging, and has devastating consequences.  The existing treatments to remove lead from the body do not undo damage already done, and the medical strategies can have serious side effects and dangers themselves. 


Flint is an impoverished city with high levels of unemployment and high numbers of minorities.  The generation of children exposed to lead there will need a lifetime of special education, therapies and other interventions.  All this in a city that is already lacking resources, and a state with a challenged economy.  Where are the stories about the future needs of these children, and how does the Governor intend to “fix” this?  I’m still waiting. 

Recent headlines seem to be telling us that antidepressants during pregnancy lead to a huge risk in autism in those unborn children.  While it may be that someday research will establish a causal relationship between these factors, that time has not yet arrived.  The study, at best, establishes a correlation.  It may in fact be that it is the depression, and not the medication, that increases risk.  Or some other factor entirely that we have not yet identified.  Or that the study is not replicable.  We don’t know.  And if sensational news stories cause pregnant women to go off their anti-depressants without talking to their physicians, we could have other serious problems.  

Research studies are happening all around us.  That is a good thing.  It takes years to establish sound results, and many studies.  Often studies contradict each other.   As non-scientists, we have to be careful not to over-react to media attention grabbers.  If you need anti-depressants during pregnancy, talk to your physician.  Weigh the small possibility that your medication can increase your child’s risk of autism against the risks of untreated depression, which are also very significant.  And don’t trust every headline that you read.

 

 

***  The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.​


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Science and Special Education
 January 24, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

I heard a scientist on NPR this week, talking about his work.  He said, “scientists have a propensity to disbelieve themselves.”  He went on to explain that scientists, by the nature of science, have a responsibility to search for the flaws in their findings, and to question themselves. 

I wonder why special education, and education in general, does not take this approach.  While there are a small (and I think, increasing) number of us in support of evidence based strategies as the only responsible and rational way to approach student learning and behavior, the majority of educators continue to use the “try it first, find out if it is scientifically sound later” strategy.  Interventions are often chosen and implemented based on hearsay, parent request, media stories or single case studies that do not prove legitimacy.  

Parents whose kids struggle with developmental disabilities are often desperate for something that will help, and they are uniquely vulnerable.  Too often they are told about an intervention that will cure, dramatically help, or “fix” their children.  There are popular approaches currently, as there always are, that charge a great deal of money to parents for interventions that have no scientific basis.  The parents, who so badly want the strategy to help, fall victim to the placebo effect.  If you want to see positive change, you will… that at least is a scientific fact.


School districts and agencies are also vulnerable.  When parents place pressure on professional organizations it is easy to cave to pressure and offer that intervention.  Most school administrators are not trained to compare and evaluate the efficacy of special education interventions.   Moreover, with inadequate funding for all special education services, often the most cost effective interventions win.  

This problem reaches to our university training programs.  There are few standards to ensure that students who will teach, or administrate, or work in university training programs are versed in the science of evidence-based education.  Some college programs are humanistic, some are focused on subjective research, and some teach evidence based interventions as an option among equals.  

Why have we as professionals in the field allowed this to happen?  Historically, education has not been seen as a “real” science.  The professionals in the field are not paid well, and it has traditionally been seen as a “woman’s field.”  The standards are totally different from other sciences.  Imagine if your physician told you that you should take a medicine for a serious health problem that some other patients had heard was helpful, even though there were no scientific studies to support its effectiveness or safety.  Yet we think nothing of doing that very thing in the world of special education intervention. 

There are changes happening.  In the science of behavior, there is now a license called a Board Certified Behavior Analyst, that requires college courses, on the job supervision, and a rigorous examination.  On the west and east coasts, and in Florida, the BCBA is now a requirement for many positions and organizations.  In the middle of the country, however, the credential is still relatively unknown and is not generally mandated or even understood.  Change is slow.  

In the meantime, it is up to all of us, parents, teachers and the community at large, to be aware that we can’t “fix” most developmental disabilities, and to tread with caution.  Consider the evidence, and be wary of the latest fads if they are not backed up by hard research. 
  

 

***  The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Review:  Go See “The Art of the Brick” at the Cincinnati Museum Center
January 17, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.




The Art of the Brick is a wonderful way to spend the afternoon with your Lego lover, whether young or old.  It is more than just Lego constructions, it is fabulous art by contemporary artist Nathan Sawaya.  The pieces range from replicas of famous works made entirely of Lego’s, to whimsical pieces that Sawaya designed himself.  Some are small and intricate, and some are huge, including a detailed dinosaur and one of the Easter Island statues.  While younger, active children may race through, they will be wowed by the master works of Lego.  And although you are not allowed to touch the art, you are encouraged to take pictures.  One way to ease the “no touching” rule for your little person would be to hand him a camera and turn him loose.  

At the end of the exhibit, in addition to the requisite gift shop, there is a room where visitors are encouraged to create their own Lego art.  And many are on display.  This area is hands on, and perfect for your kid with ADHD or a developmental disability.  Or for 55 year old behavioral consultants who like Lego’s! 

The Art of the Brick is a special temporary exhibit that will only be there through May 1, so don’t wait.  Tickets are $19.50 for adults, and ($12.50 for members), and $12.50 for children ($8.50 for members).  No kickbacks for me because of the plug, but I have to say that I loved it as much as my family did.  It is perfect for the young and the young at heart! 

While we are on the subject, the Museum Center is full of wonderful areas and exhibits to captivate kids with ADHD or ASD, as well as typical kids.  From climbing areas to caves, the Museum Center has it all.  If you live in Cincinnati, a membership will pay for itself quickly.  If you are not lucky enough to live here, a fun weekend trip is a great way to spend time as a family.  

  

 

***  The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Both Sides of the Medication Story For ADHD
January 10, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

The pros and cons of medication for ADHD symptoms are personal in our family.  We have lived with the academic improvements and subsequent changes in self esteem that come from finding the right medicine, and we have lived with the devastating side effects of the wrong medication or too much of the right one.  There is no one right answer, and medication decisions must be made with a skilled physician (often a psychiatrist) who takes the time to understand your child’s individual needs. 

The right medication can allow children or adults to focus and be successful at school or work.  It can improve grades, prevent double booked appointments, and minimize inappropriate outbursts or behaviors due to impulsivity.  Research shows that medication drastically reduces the risk of adolescents who have ADHD to be involved in car accidents, substance abuse and other dangerous behaviors.  Carefully monitored, the right medication can change a life.

However, the side effects of medications are significant.  Youngsters can lose literal inches of growth, they can have significant loss of appetite and weight loss, and difficulty sleeping.  Some individuals may have personality changes, from depression to rage to anxiety.  The risk exists for increases in harmful disorders such as trichitillimania, the need to pull out one’s own hair.  Taken at high doses, some ADHD medications may cause heart problems and other serious medical conditions. 

There is a tradition of “medication holidays” in the management of ADHD medications.  It used to be standard procedure to recommend the summer off, or to suggest that children take each weekend off.  Then the trend reversed, as  the many activities of young people on weekends and in the summer upped the need for focus and behavioral control.  Summer camps, activities and religious schools encourage/ pressure families to maintain medication, for legitimate reasons.  Demands in these environments can be high, and kids suffer as well as the program if they have no ability to function.  But there is a cost.  The weekend may be the only time that little Billy eats, or the summer may be the chance that his body needs to catch up on normal growth. 

So what is the take away here?  Every medication has side effects.  For each individual, you and your physician have to balance the benefits and the side effects, which can be significant.  Sometimes the choice is clear, but often it is a difficult decision.  There is pressure in the traditional school world, where students need to sit for long periods, focus on lectures, take notes simultaneously, memorize out of context, and maintain a decorum that is not “ADHD friendly,” to use medications to support the environment.  That makes sense, as the right meds can be life changing, from grades to self-esteem. 

However, we all need to be aware that the use of medications comes with a cost.   Loss of appetite to the point of weight loss, lack of affect and changes in personality, impact on normal growth patterns, and sleep issues are common side effects.  Less common problems can be frightening, from depression to feeling like ants are crawling all over you.  Puberty can be impacted.  As professionals, we need to be sensitive to the hard choices that families make.  As parents, we need to remember that the kid who has been refusing to take his meds may be experiencing frightening or unpleasant effects.  And that he undoubtedly feels more himself without them. 

Sadly, that exuberant, bouncy kid probably struggles in structured settings without pharmaceutical help.  His impulse control is minimal, and his ability to retain information that is not highly stimulating, despite his intellect, is poor.  In addition, the research shows that he is at significant risk of substance abuse and accidents behind the wheel if not medicated. 

Hard choices.  The decisions are life long, fluid, and ever changing.  We can help by respecting those decisions, and the young people who must live with those choices.

 
  

 

***  The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Book Review:  The Rosie Project by Graeme Simsion
 January 3, 2016


Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

Here’s a fun book to start off your new year in a light, no-stress way.  The Rosie Project is a novel about a brilliant but socially challenged college professor.  In entertainingly Aspergers-style he designs a scientific approach to finding a wife that he dubs the “Wife Project,” but it doesn’t go as he expects.  Enter Rosie, who is everything he is not looking for.  The rest is a delightful surprise. 

While allowing for personal growth, Graeme Simsion does not make his main character anything that seems foreign in an individual with high functioning autism.  Don Tilllman is quirky and endearing, and his friendship with Rosie feels real.  You even get a happy ending!  And I hear that the sequel is fun as well. 

Nothing deep here.  Just a little treat to make those cold winter days go by faster.

 
 

***  The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.

                  

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The Trouble With Labels

 December 13, 2015 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.

 

I have been struggling with the concept of diagnosis and labelling this week.  

I am (still) reading the enormous and impactful book “NeuroTribes:  The Legacy of Autismand the Future of Neurodiversity”  by Steve Silberman.  So much of what has happened in the history of disability and particularly in the autism spectrum disorders world has been about different definitions of labels.  These distinctions affect the number of people who are diagnosed, the way the public views the term and thus the people, and funding that follows the group of people.  And yet the labels can be so randomly determined.  NeuroTribes goes into fascinating detail about the terms Aspergers and Autism, and how arbitrary the current usage is.  It is all wrapped up with World War II, inflated egos, who got the most press, and it has very little to do with science! 

In our current clinical world there is an “epidemic” increase in the number of people labelled with autism spectrum disorders.  Is the increase real, or a function of diagnostics alone? There are strong disagreements here, and I don’t yet know the answer.  I can tell you that just as the numbers of individuals labelled with ASD have exploded, the number of people labelled with other developmental disabilities, intellectual disability, or what used to be called “mental retardation” has plummeted.  Are we diagnosing more appropriately now? Maybe, although there are certainly some professionals out there who are not using differential diagnosis carefully, and the subtle differences between “high functioning autism,” “quirky,” “obsessive compulsive disorder” and “ADHD with anxiety” are challenging for experienced clinicians.  There is also more funding for families if a child has the label of autism, and I have sat across from a psychologist who said, “Would you like me to give him autism?”  Yikes. 

Some days I wonder if we would be better to throw out the labels all together.  Yes, they are important to funding.  And yes, they seem helpful for educational planning.  On the other hand, I design an educational program or behavior program on the child’s strengths and challenges, and not on the word at the top of the page.  In “individualized education,” which is supposed to be the hallmark of special education, we look at each child and design a program that works for him.  If that is the case, why are we so hung up on diagnoses?  The labels are created by us, and then we try to squeeze people into the categories we have artificially invented.  What if, instead of an IEP or 504 that listed diagnoses, we listed his best learning channels, his difficult areas and strategies to work on those areas?  

Before I get hate mail, I know that I am not being realistic.  It is all about money, and funding sources need diagnostic labels.  And I am not saying that autism doesn’t exist.  However, I am concerned about the narrow boxes that labels force people into.  And I am not convinced that we are using them to the betterment of many people.Every individual has strengths and challenges.  Every individual sees the world in a unique way.  And some of our brains work in very unique ways.  Wouldn’t it be great if that uniqueness was seen as an integral part of what makes each person special?  Wouldn’t it be great if we didn’t need labels in order to provide quality educational services?  Something to think about…

Every individual has strengths and challenges.  Every individual sees the world in a unique way.  And some of our brains work in very unique ways.  Wouldn’t it be great if that uniqueness was seen as an integral part of what makes each person special?  Wouldn’t it be great if we didn’t need labels in order to provide quality educational services?  Something to think about…

 

 

***  The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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The Role of Conscience in Autism Spectrum Disorders
October 30, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

How do people with ASD make ethical decisions? 

As a Board Certified Behavior Analyst, I am trained to look at behaviors based on what we can see and objectively describe.  I don’t take data on “anxiety,” but instead on the tantrumming behavior that it may result in.  Still, I recognize that there are things I can’t see or touch that certainly exist, like anxiety, like freedom, or like love.  Similarly, I am trained not to use words like “conscience,” but I know that I have one that impacts my decisions.  I can’t see it or define it behaviorally, but my sense of what is right and what is wrong is deeply embedded and instinctual.  What is the role of conscience in individuals who have autism spectrum disorders? 

Let’s first try to define conscience; it is not as easy as you would think. I found religious definitions, philosophical definitions, evolutionary biology definitions, neuroscience definitions, and secular definitions.  OK, so for the sake of this brief blog post, let’s stick with the basics.  Conscience is often defined as intuition or judgement that assists us in distinguishing right from wrong, leading to feelings of remorse when we go against our values, and integrity when we conform with our values.  While religious views see conscience as inherent in all humans due to a higher power, secular and scientific views perceive conscience as genetically determined, with specific decisions subject to learned cultural norms. 

Most of us learn through language based thinking.  We have internal language that is constantly running in our brains, and many scholars have used our abilities to do this as a primary characteristic that distinguishes us from other mammals.  Yet, you and I have many loved ones and friends with developmental disabilities who think in pictures rather than words.  Temple Grandin has written at length about her visual thinking, and how she uses it even in the formation of concepts and to make generalizations.  Grandin has suggested that while typical humans are blocked from unconscious thought by their language based thinking, individuals with ASD have constant access to that more detailed, sensory based thinking in the more primitive parts of the brain.  Perhaps, she says, the other parts of the brain interfere with the visual and sensory thinking. 1


Temple Grandin make social decisions based on rules that she has devised.  She categorizes situations as either “1) Really Bad Things, 2) Courtesy Rules, 3) Illegal But Not Bad, and 4) Sins of the System.”  Sins of the system are rules that must never be broken, and have severe penalities, even if they seem illogical to Grandin. 

From a practical standpoint, let’s say that I find $1000 in a wallet with no identification on the ground at the grocery store.  My conscience kicks in instantly, and I know that it is wrong to keep the money.  I need to try to find the owner.  I don’t have to go through a long thought process, I just know the right thing to do. 

How would my friend with an autism spectrum disorder react to the same situation? He would probably first run through his internal “videos” to see if there is an existing experience that matches this one, as a guide to what to do.  Assuming he hasn’t found a large sum of money on the ground before, he would start assessing his data.  He would calculate the probabilities of finding an anonymous person in a crowded grocery store.  He would consider whether it is possible match a fingerprint of the owner, and conclude that unless the person has a record that is not realistic. 

Next my friend might debate the pros and cons of keeping the money.  If he has the maturity to recognize that his own thinking differs from others, he may have a system similar to Temple Grandin’s that he has internalized.  He would then run through the laws and rules in this situation, and determine that, though it would not be stealing to take the money, it might be socially unacceptable. 

If he is not in sensory overload by now, he would look to see if the store has cameras, and perhaps suggest checking them for the owner.  He would turn to the authority in the situation, which in this case would be a store employee. 

Can you imagine how cumbersome this process is for my friend with autism?  I used my intuition and relied on my conscience.  My friend processed his previous experiences and current sensory learning, listed and discarded facts, used rule based strategies, and calculated a decision based on all this accumulated information.  He may or may not have come to the same conclusion that I did.  He is unlikely to have been guided by an inherent conscience. 

A parent of someone with an autism spectrum disorder was my sounding board for this blog during its development.  She agreed with my premise, and summed up with the truism that parents need to “teach their children well.”  If conscience is not a prevailing motivator for individuals with autism spectrum disorders, then we know that it is crucial that they have sound behavioral educations, strong social skills training, and lots of tough love as soon as possible to give them the right  “videotapes in their heads” for unexpected situations.

Different learning styles are not right or wrong; they are just different.  Moral behavior based on conscience is not better or worse than moral behavior based on learned rules and rational decision making.  It is very different however, and gives us a great deal to think about.  

Teach your children well!
 

1 Temple Grandin.  Do Animals and People with Autism Have True Consciousness?  Evolution and Cognition, 2002, Vol. 8, 241-248. 

2 Temple Grandin. The Way I See It:  A Personal Look at Autism & Asperger’s.  Arlington, Texas:  Future Horizons, 2008.



***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Movie Review:  “The Accountant” and Its Portrayal of Autism
October 23, 2016


Nancy Magnus Kopnick, Ph.D., B.C.B.A. 

 I had heard that the choice to give the title character in “The Accountant” an autism spectrum disorder had provoked some conversation.  Having seen it, I am deeply conflicted about this movie.  

The Accountant is a fictional action thriller, but the accountant Chris Wolff, played by Ben Affleck, has high functioning autism.  The story jumps between his present day attempts to do his job as an accountant who works with dangerous clients, cooking books, and flashbacks to his formative years.  In the present, he is befriended while on the job at a large firm, trying to find a missing money stream. That neurotypical friend, played by Anna Kendrick, is the one who helps Chris to discover the missing money, and soon the accountant is busy saving Anna Kendrick’s life and taking out the bad guys in fast paced action sequences that would make Mission Impossible fans happy.  We get a happy ending, if you don’t count the bodies, and lots of star power including J.K. Simmons, John Lithgow, Jean Smart and Jeffrey Tambor. 

Ben Affleck’s Chris Wolff is compelling.  I loved the detailed attention to his character.  Chris Wolff speaks like he has autism, walks like he has autism, and has many characteristics of someone with autism.  He experiences anxiety when he does not get to complete routines, and he uses sensory strategies, some less healthy than others, to cope.  While I have seen criticism in reviews of his self injurious behavior when upset, anyone who knows people with ASD is aware that this is not an unrealistic possibility.   

Wolff, who is clearly brilliant, has a need to connect, but doesn’t know how, and he does not get sarcasm.  Yet over the span of the movie he shows humor, familial love, and loyalty, even as his autism is evident.  It is also noteworthy that this movie portrays a man with autism as athletic and good looking, instead of a nerdy guy with glasses. 

During the first half of the movie I didn’t buy the decisions that this man with autism was making.  His behavior does not follow the rules of society, and he knows that he is breaking laws and societal norms.  It was only as the flashbacks continued that I understood the premise on which these decisions were made.  The character has had a life of upheaval… a mother who left, 34 childhood homes in 17 years, and a military father who taught him to fight but did not necessarily instill a sense of right and wrong.  As Ben Affleck said in an interview I read, this is one particular character with a particular set of circumstances that make him who he is.  I did end up finding the character believable, autism and all. 

I had some problems with this script.  Without ruining the movie, let’s just say that Chris’ “contact,” like the voice that instructs in Mission Impossible, is a mystery until the end of the movie.  I have a problem with the way this was resolved from an autism perspective, but we’ll have to talk about it after you see the movie! 

I tried really hard not to like this movie.  I am weary of people with developmental disabilities or mental health challenges being portrayed in the media as dangerous or amoral.  After the tragedy at Sandy Hook Elementary I felt that I had to defend young men with autism spectrum disorders from a world that wanted to vilify them.  I do not think it is helpful to the autism community to portray a murderer as having no remorse, or as a professional killer.  I wish that writer Bill Dubuque, Director Gavin O’Connor, and O’Conner’s fellow producers had made different choices.  I would have been just as happy to sit through a movie about a man whose past made him a killer, without the added “coincidence” that he had autism.  I have to admit however, that the autism was part of what made the character so compelling.  I just wish that wasn’t the case.

This story is fiction.  It has no basis in reality.  However, I am fearful that once again the media is pairing autism with a negative profile for the sake of ratings, and the almighty dollar.  Individuals with disabilities have enough challenges without overcoming high profile characterizations like this one. 

And yet, Affleck creates a compelling and nuanced character in this movie.  His attention to the details of autism is to be lauded, and if I come off my moral high ground, it is a fun, well made movie.  There are good people who have autism spectrum disorders, and there are flawed people who have autism spectrum disorders, just like there are good and not so good neurotypical individuals. This is the story of one person whose environmental and genetic influences created a killer.  I wish I was OK with that. 

When we walked out of the theater my husband, (who knew my concerns going in and my intent to write a blog), said, “You are in trouble!”  That’s because it is easy to like this movie.  If you enjoy a high body count, that is.  Go see it and let me know what you think!   

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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​​​Inclusion?  Least Restrictive Environment and What It Means for Each Child
 October 16, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

What does the term “least restrictive environment” or LRE really mean?  The term itself comes from Public Law 94-142, the original law that protected the rights of children with disabilities to receive publicly funded education.  In its infancy LRE was often about education of any kind, usually in a segregated classroom, frequently an old janitor’s closet or the little room in the basement at school that no one else wanted.  Still, for the families who pushed through this landmark change in the law, PL 94-142 was life changing, and LRE meant that students had the right to be educated in public schools until the age of 22.  

As the years passed, LRE came to mean inclusion for many parents and professionals.  Inclusion, or the completion immersion of a student in the typical classroom, was accomplished only with hard fought battles and over many years.  One of the most referenced cases was a wonderful local Cincinnati family, the Ronckers.  Their battle with the Cincinnati Public Schools was decided in 1983’s Roncker vs. Walter, when the courts stated that the student’s services could be feasibly provided in a non-segregated setting.  

Unfortunately, inclusion has too often become “dumping,” when a student is placed in the typical classroom but without adequate supports.  The result can be an inadequate education for the student, a lesser education for his peers, and tremendous stress for the teachers involved.  And, no surprise, it usually comes down to money.  Supports and services mean manpower, and staffing is expensive.   We could talk all day about the politics of special education, but suffice it to say that districts never have enough money to provide all the services that they need to provide, so they balance needs, “rob Peter to pay Paul,” and are often in reactive mode. 

Least Restrictive Environment today has a more nuanced meaning.  I am no lawyer, so I will quote Wrightslaw, a well-known special education advocacy organization: 

Special education services should be delivered in regular education classes (not special classes, separate schooling, or other removal from the regular ed environment) except “when the nature or severity of the disability of the child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.


The challenge is to define “satisfactory achievement of education” for each child.  LRE is not a place, not a room or a building. It is an idea.  While in the best of worlds we want all students to benefit from the typical classroom, and to grow to their maximum potential with their peers, that is not always easy, or even possible, to accomplish.  The need for unique planning for each student is reflected in the mandate for each child to have an IEP, or “individualized educational plan.”  Individualized means just that; looking at each student’s strengths and challenges, environment and goals, and determining what is best for him.  And for some students that may not mean inclusion.  LRE also may change as a child ages.  Consider these young people:

Ellen has a severe form of autism spectrum disorder.  She is upset by loud noises, bright lights, or strong smells.  As her anxiety rises Ellen becomes self-injurious and will also lash out at whoever is in her personal space.  When Ellen’s anxiety is low she is loving and happy, but it is hard to create the physical environment that allows her to have teachable moments.  That “least restrictive environment” is not in her peers’ third grade classroom.

Mark is a sweet young man who tests far behind his peers in all academic subject areas.  He is socially and emotionally several years behind, but the bigger concern is that the older he gets the further behind he falls.  As he starts seventh grade it is clear that the abstract nature of the curriculum is increasing, and Mark is at a different place.  Despite curricular modification and accommodations, Mark needs some pull out for 1:1 teaching/ tutoring, and the amount of pull out that he needs increases as he ages.  His LRE is more nuanced, but not entirely inclusion.

John can keep up academically with some of his peers in high school, but when he was in public school he was lonely.  School could help him with academic modifications, and they could get him involved in activities, but they couldn’t give him friends to hang out with in the hall.  The kids who he has something in common with, and who are interested in the same things as him, also have disabilities.  John has transferred to an alternative school that is all high school students with developmental disabilities, and John looks forward to going to school each day.  If quality of life is a part of the consideration, John’s LRE at this point in his life is not public school.

I have spent my career encouraging teachers, administrators and parents to look at each child as unique.  I find that our young teachers are “brain washed” that inclusion is good, and any alternative is bad.  This type of oversimplification ignores the needs of families, the social and emotional needs of youngsters as they age, and the complexities of each situation.  Segregation is not a dirty word, unless it is forced upon a student or family because the district is unwilling to do what is reasonable to support the student.  If it is the choice of the family, or is based upon the needs and desires of the student, an alternative setting may indeed be his LRE, and the best fit for a student.  Let’s all remember that there is an I in IEP for a reason.

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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​​​The Value of Community for Individuals with Disabilities
 October 9, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

I have been thinking a lot about community lately, and how much it matters to individuals with disabilities.  “Community” is not just the place that you live; rather it is the people in that neighborhood who get to know you, who interact with you on a regular basis, and with whom you build relationships.  

I thought about community when I sat next to my friend at synagogue the other day.  She has an autism spectrum disorder, and synagogue has become increasingly important to her as she has aged.  She lunches with friends she has met at temple, she knows people when she comes to services or an activity, and she is missed when she does not come.  She also knows many of the songs, and I thought, as we sang together, how vital the temple community is to her quality of life.  This is how it is supposed to work. 

Historically, the idea of community for people with disabilities was not an issue.  Segregation was the norm, whether through institutionalization or more recently, through special education classrooms that had virtually no contact with the rest of their school environment.  The idea that separate was better was challenged by researchers and leaders in our field starting in the late 1960’s and 1970’s.  One of the leaders of this movement in the US was Dr. Wolf Wolfensberger, a German born academic who spent his long career advocating for “normalization” and the “social role valorization” of individuals with disabilities.  He identified the ways that our society stigmatized people who are aged, infirm, disabled or different, and fought  to change those systems.  

I was lucky to have the opportunity to study Dr. Wolfensberger’s work intensively at several workshops, and to visit  Syracuse University during my Ph.D. studies, where his work continued.  Much has changed since Dr. Wolfensberger began to speak out, but there is still much to do.  

A more recent approach to fostering community is the idea of “Community Circles” or “Person Centered Planning.”  In this approach a team of individuals who are involved in the person’s life help them to plan for the present and the future, identifying key persons and activities that will help them to assimilate and be a part of the community.  This approach is used by many non-profit organizations and social service agencies to facilitate positive outcomes for adults.  My friend John has a “community circle” plan in place, that identifies specific adults in his life who care about him, who watch out for him, and who will be there for him as he ages.  

Of course it helps to live in an area where you can access the community.  Since most of my friends with autism spectrum disorders don’t drive, that has usually meant being in walking distance of stores, restaurants, the library, and other community centers.  Unless you live in New York City or Chicago, transportation can be difficult.  However that is changing.  A young person I know just learned to use Uber, and got herself to a program independently.  Without an Uber she would have been stuck at home.  And the pride on her face as she told me of her accomplishment was lovely.  It’s a new world opening up.  

We can help to create a sense of community for individuals with disabilities.  Of course, we could do this for our isolated “typical” neighbors as well; the old, the infirm, the reserved person who lives alone… Reaching out is hard, but it matters.  I have resolved to “put my money where my mouth is,” as they say, and to reach out when I can.  If we all take a simple step, whether it is just saying hello, setting up a lunch, or sitting on someone’s stoop to chat, we will enhance the sense of community for our neighbors and give ourselves a big boost as well. 


 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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Ask Dr. Nancy:  Ten Quick Toileting Tips

October 2, 2016


Nancy Magnus Kopnick, Ph.D., BCBA


This week a mom I have worked with called me the "Potty Whisperer."  I may change my business card! There is no magic in toilet training however.  Here are some basics that apply to many children.
 


1. Urine training often happens earlier than stool training.  Don’t be discouraged if you only get part way.


2.Girls often train earlier than boys.  Many typical boys don’t toilet train until three or four, and even then may have occasional setbacks.

3. The higher the knees of the child on the potty or toilet, the easier it is to do a stool.  Use a stool (no pun intended!) under his feet to raise his knees as high as you can. 


4. It is often not possible to teach toilet training if the child has chronic constipation or irregular stools.  The goal is frequent, soft but solid stools that do not require any straining.  If constipation is a problem, or if the child has to work hard to have a bowel movement, talk to your physician.


5.In order to toilet train, children must feel the need to use the toilet, and they must feel the missed urine or stool if it happens.  Modern diapers are so absorbent and comfortable that they may not care if the “miss” is in there!


6. The more he drinks, the more he will urinate… and the faster he will learn.  You need lots of opportunities to praise him for using the potty or toilet, so more is better!


7. Have rewards ready for the process; you often have to use rewards at the beginning.  Make them little and immediate… a bowl of pretzels in the hall for after hand washing?  A special favorite drink with a little cup up high that you save for a reward? 


8. Sometimes it helps to have a more significant reward for urine or stool in the toilet, but be sure it can only be accessed at that time.  


9.  Don't know where to start?  Try this: 

Phase 1:  reward sitting on the toilet, particularly if it is a new behavior.

Phase 2:  reward dry pants on an hourly or regular basis; have him put his hand there so he understands what you are praising.

Phase 3:  reward any little dribble in the toilet, even if it is an accident. 

Phase 4:  reward significant urine or stool in the toilet.


10. Have an aiming problem?  Try aiming for a cheerio, sitting backward on the toilet, or rewards for good aim.


I know I said ten tips, so consider this a bonus!


11. This is one area in which your child has complete control, hence many of your struggles.  If the process

becomes aversive, or if your child is searching for independence and choices, this is commonly where training becomes a problem.  Remember, keep it positive.  Provide rewards that are of high value to your child, and give them immediately.  And don’t get into a power struggle.  It is better to back off for a few months and then start fresh.

 

*** The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral support person or from a professional who is trained and certified in behavior analysis.


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Disability in the Media:  “Speechless” A Great New TV Program
 September 25, 2016

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

This week I watched the premiere of “Speechless” on ABC (Wednesday nights).  I was leery of this program, as I have seen so many stereotyped portrayals of people with disabilities on television and the big screen.  There are so many ways they could have gotten it wrong.  The show isn’t perfect, but I finished watching with a smile on my face and immediately set by DVR for the season.  Here’s why. 

The show’s name is a reminder that the sixteen year old in the family, JJ, has cerebral palsy and does not speak.  He communicates however, using a head pointer and a letter board.  JJ is a great character; he is intelligent, sarcastic and funny, his eyes reflect his feelings, and we see the world through his often frustrating and sometimes comical experiences.  He has an imperfect relationship with his siblings, just as we all do.  He gets annoyed with his parents just as all teenagers do.  He is not saintly, he is not the evil character, and he does not perform miracles or have a direct connection to the supernatural (like so many of the recent characters with disabilities on TV).   I am looking forward to seeing how the show continues to develop JJ’s character.  

And here is the best part; unlike other shows I have seen, this character is played by Micah Fowler, a terrific actor who actually has a disability.  That is groundbreaking.  The only other time I can remember seeing an actor with a disability was on “Life Goes On,” way back in 1993, when Christopher Burke, who has Downs Syndrome, masterfully portrayed a teen in that family.  Since then most of the characters with significant disabilities on television (i.e. LA Law, Glee, Parenthood) have been terrific characters with interesting story lines, but the actors involved did not in fact have a disability in “real life.”  

Speechless has a brazen sense of humor that I love.  Maya, the mom, is played flawlessly by Minnie Driver.  She is sarcastic and a sometimes strident, always strong advocate for her son.  Maya struggles to balance her role as advocate for JJ with the needs of her other children.  She sometimes irritates the people around her because she doesn’t know when to quit.  Maya has a huge heart however, and you fall for her quickly.  I know so many moms like her in real life.  In fact, some may say that I have been her.  

Speechless sometimes goes too far in an effort to find humor in every situation.  I didn’t believe a couple of the moments in the show, including a scene when the entire school gives JJ a round of applause (for no reason other than being a guy with a disability).  OK, it was a little ridiculous and stretched the point.  I’m willing to give them one or two missteps if they keep offering quality scripts and making me smile.  Which they did.  Here’s to more working actors with disabilities, and to realistic portrayals.
 

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.


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You Know You’re In Trouble When…
 September 18, 2016 

Nancy Magnus Kopnick, Ph.D., B.C.B.A.
 

(For a long time I actually thought our house and family was normal.  I’m not sure when I figured it out, but there have been plenty of things that reminded me…see if these moments sound familiar.) 

 

The other mom’s pat you on the back and say, “Don’t worry, the crossing guard keeps a really close eye on him.” 

His memory is so bad he doesn’t even remember that he is in trouble. 

You are the only one in the house who can find their keys, their wallet, OR their homework in the morning.  Every morning. 

He forgets one shoe when he leaves math. 

The pharmacist knows you by your first name. 

The emergency room triage nurse recognizes you. 

The school nurse is on your speed dial.

There is something alive in his locker. 

It is a good week if you only have one catastrophe at school. 

You hit your (really big) medical deductible in February. 

You buy your third microwave in a year, and your third fire extinguisher. 

Your idea of vacation is the library or outpatient surgery. 

You realize you don’t know what “normal” is but it sounds really boring.
 

 

 

***   The recommendations in this column are not intended for a specific child, but are general ideas that work with many youngsters who have autism spectrum disorders or developmental disabilities.  If general suggestions do not work, it is strongly recommended that you seek guidance from your existing, local behavioral  support person or from a professional who is trained and certified in behavior analysis.Type your paragraph here.


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Nancy Magnus Kopnick, Ph.D., B.C.B.A.

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