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For the Love of Sophie Annalee

Sophie is an excellent student. She loves her three big brothers, her dog, soccer, and loves to read. Her favorite books are about historical fiction. Recently she read books on September 11, World War 2 and The Battle of Gettysburg.

She is the “baby” of the family. Sophie, like most youngest siblings met milestones early, eager to keep up with the boys. She is a curious, creative and active girl. She is truly the apple of her family’s eyes. Sophie is amazing and today she is a star is so many ways.

I am Sophie’s Mom. I spent twenty years in the field of special education.  I taught for fifteen of those years at various levels including elementary, middle and high school.  I spent three years as an autism consultant and am currently a special education administrator. I have four degrees including a doctoral degree in special education from the University of Kansas.  None of these high and mighty accolades fully prepared me to be the Mama of Sophie Annalee.

            Always curious, always active, when Sophie became mobile, I put up the usual gates at the top of the stairs and around the fireplace.  She climbed over the gates and pushed through all barricades. She was around eighteen-months-old when she made her first escape.  I was folding laundry and she was standing behind a curtain watching it snow outside the sliding glass door. I turned around to give her a “boo” behind the curtain when I was surprised to find the door was ajar and little footprints in the snow.  I ran to follow the footprints and found her in the front of the house, naked aside from her diaper. She was happy as a clam!

As Sophie grew older, her typical toddler behavior became more difficult.  It was nearly impossible to get her to sleep before 11 pm and she rarely slept through the night.  At the daycare where all of my children attended, I frequently heard, “she is so different from her brothers!”.  Going out to eat was a nightmare, movies were impossible and grocery shopping was exhausting (I would give her a bag of powdered doughnuts to eat as I shopped…I was too busy to notice the judgement bestowed upon me)! 

Just before Sophie’s kindergarten year, I took her to a child psychiatrist.  After a few visits, the doctor confirmed what I suspected: ADHD, combined type.  Before school started, I spoke with Sophie’s teacher to prepare for the school year.  This teacher fostered a relationship that made Soph want to do anything to please her.  In fact, I began to tell her at home, that I would tell Mrs. T if she didn’t go to bed, or take a shower or any other task she protested.

In first grade, demands began to increase.  The more she was asked to do, the harder Sophie dug in her heels.  When her teacher left for maternity leave in the fall, Sophie fell apart.  We held on for dear life until Mrs. O’D returned. It was then that I brought up medication.  Mrs. O’D felt that it could be helpful, so we took the plunge. Our doctor started with a non-stimulant and it was helpful.  Not only did Sophie’s behavior improve, but academics became easier as well. Sophie had struggled all year to pass spelling tests and now generated perfect scores.  The sides of the paper that were previously torn and tattered with erase marks and doodles were now pristine.

At home, Sophie’s behavior continued to escalate.  Failing to inform Sophie of a change in routine after school left her completely unhinged.  One evening, I turned my car towards the middle school instead of turning towards home. She began to scream and cry; she didn’t want to watch Isaac play basketball.  I moved her brother, Eli, to the front seat so he would not get injured from the shoes, books and other flying objects. She continued to scream and cry for the ten-minute ride to the middle school.  Once there, she refused to get out of the car. I sent Eli inside to watch the game while I waited just inside the door where I could see her, but she could not see me. It seemed like an eternity before she finally came inside. 

Over the summer, the lack of routine affected Sophie more than ever before.  I would wake up in the middle of the night to find her creating spaceships out of various boxes and objects from our home.  Another middle of the night project included cutting all of her Barbie doll’s hair, putting it into small storage bowls, filling the bowls with water and freezing it.  I have no idea what her imagination was doing at that point.

Sophie is incredibly creative.  She made this castle in the middle of the night all by herself.  She used cardboard boxes, computer paper, glue, crayons and blue tape.

Before Sophie’s second grade year, she started her first stimulant medication.  This worked like magic at school. Her teacher also implemented new strategies including sensory breaks and a reinforcement system so Sophie could earn craft time at the end of the day.  Sophie loves sharks, so Mrs. H allowed her to choose different pictures of sharks to self-monitor her behavior throughout the day. Mrs. H was able to connect with Soph on a different level and Sophie blossomed.  She began to love reading, she showed confidence in her academic ability and she loved going to school.  

At home, however, we faced the same struggles. Her brother, Eli, began to show signs of anxiety and depression.  Through counseling, we found that by constantly allowing Sophie to lead the direction of our family, he learned to become extremely withdrawn and passive.  If he wanted to get dinner from McDonalds, but Sophie wanted Taco Bell, we ate Taco Bell. If Sophie wanted to watch Tom and Jerry and he wanted to watch Backyardigans, we watched Tom Jerry.  He learned that his opinion was not of importance so he quit attempting to have one. His very quiet personality moved even further inward to avoid the fury of Sophie. I had Mom guilt. Mom guilt. Mom guilt. 

Back to the doctor and more medication.  We increased Sophie’s dosage of Concerta and added guanfacine.  This was to help make our evenings a little less chaotic. I hoped this would allow me to be a mom to all of my children, not just Sophie.

Sophie started third grade this year and I requested a 504 Plan.  She is blessed with another amazing teacher who has formed a relationship with my very spunky girl.  She is doing well academically and most evenings are tolerable, if not fabulous. We still have moments when she removes her brothers’ pictures from the wall because she is mad at them.  She still writes apologies notes that start with, “I’m not sorry I yelled at you, but…”. She still slams the door and hides in closet until she can calm down and I still find her old shoes buried in the backyard.

The medication helped slow Sophie’s impulsiveness and increased her ability to concentrate for longer periods.  Sophie, however, has not changed. The people in her life have changed responses to her behavior. Our entire family has more structured schedules and routines. At home we use a behavior chart that Sophie checks regularly. She earns an allowance, loves to shop and having this bit of independence and money to spend is motivating and important to her. Her behavior chart and Sophie’s ability to understand and relate to it allows her to self-monitor. The behavior chart and medication eliminate many of the struggles we experienced at home. When it’s time to shower, I set the timer for three minutes for her to get into the shower. If she refuses, I don’t say a word to her. I simply re-set the timer for three more minutes. I repeat the process until she gets in.  I make a note in her chart when she complies or doesn’t. I use this system for taking medication and other tasks that cause her to dig in her heels. At the end of the week, we review her chart, she receives her allowance. Noting on her behavior chart, without saying a word is incredibly helpful. This also helps her understand that she is in complete control of her allowance and when and how she can spend it. 


Sophie is a master Lego builder.  She can put together any Lego plan.  She belongs to the Lego club at her school.

Lessons I Learned

I realize now that I minimized ADHD when I was teaching.  Kids with ADHD rocked in the chair while reading and spaced off in class.  And that is just the beginning. My daughter yearns for routine, struggles to communicate her feelings and strives to do the right thing even though her impulses take over more often than not. 

I have learned so much from loving and raising Sophie! Even with my extraordinary education and training I did not fully understand the perspective of being a parent to a child who needed more than others. I could not completely empathize with the parent who gets those calls from the school. I also did not fully comprehend the family dynamics that occur under these circumstances. What I have learned from Sophie has made me a better parent, a much more empathic educator, an administrator who understands how very critical it is for that parent/teacher/administrator relationship to be strong and collaborative.

In reflecting upon my experiences I offer these tips to parents raising children who have ADHD.

Ten Tips for Parenting a Child with ADHD:

1.      Ignore, ignore, ignore!

 It’s so hard to ignore the slamming door, the “I hate you” scream or the refusal to get out of bed.  As a parent, our impulse to correct our child in that moment This will only backfire and increase the intensity and duration of the behavior.  It is crucial to give your child time to cool off and process before attempting to engage.

2.      Follow up after a blowup.

It is critical to process with your child after an incident has occurred.  Use these moments for you and your child to learn from the situation. Talk about what each of you could have done differently.  Talk about how you will each handle the situation if it presents itself again.

3.     There is no right or wrong with medication.

Medication is a very difficult and personal decision. Sophie was in the first grade when we decided to attempt medication.  She was struggling behaviorally and academically. Within a few weeks, she was able to get every word correct on her spelling test.  Her handwriting became incredibly legible. The sides of her papers were not torn with doodles covering every empty spot. We attempted multiple combinations of medication before we found the mix that worked best for Sophie, but it has been well worth it.

4.     Children with ADHD do not want to misbehave. 

Impulsivity is a characteristic of many individuals with ADHD.  This may manifest itself as being impatient, blurting out, and an inability to restrain emotions and actions.  Teaching a pause helps children slow down and think before acting. Sometimes, the action happens too fast, but it is important to practice the pause, role play and go through scenarios using a pause.

5.     Attempt to keep a consistent routine.

Children with ADHD are working hard to organize their world each day.  Providing structure and routine may alleviate some stress they feel in daily life.  Additionally, when children know what to expect, behaviors are less frequent. 

6.     Use positive reinforcement.

Continually catch your child doing good and acknowledge them with specific praise.  “Thank you so much for putting your backpack on the hook when you came home.” Sophie has worked for many things such as craft kits, ice cream after school, and making me ride a roller coaster with her at Worlds of Fun. 

7.     Communicate early and often with your child’s teacher.

It is incredibly important to have an open and honest relationship with your child’s teacher.  Be realistic about your child when you talk to his/her teacher. Work with your child’s teacher to provide reinforcement at home for a “good” day at school. 

8.     Talk to your child about ADHD. 

Don’t avoid the topic as if there is something “wrong” with your child.  I tell Sophie that her brain is wired differently. It helps her think about things in different and creative ways, but is also makes it harder for her to control her actions.

9.     Continually point out the wonderful things about your child.

Self-talk patterns in humans is developed before the age of ten.  Acknowledging those traits that make your child unique builds esteem and leads to long-term positive self-talk.

10.   Not every child with ADHD is hyperactive. 

Some children are quiet and may get lost in his or her own thoughts.  These children may have difficulty starting and finishing a task. It is helpful to break tasks into small steps, use a timer and use visuals reminders.


Sophie loves to play soccer.  Her favorite position is midfielder.  She gets to run and kick the ball most in this position!

Biography

Dr. Toni Cook is a proud graduate of the University of Kansas.  During her years at KU, she studied under Dr. Michael Wehmeyer, researching best practices for students with significant support needs.  Toni left KU with the quest for equity and persistence in supporting students to become as self-determined as possible. 

Dr. Cook is currently is the Assistant Director of Special Education for Liberty Public Schools in Liberty, MO.  Prior to this position, she served as an Autism Consultant in the Shawnee Mission School District and a special education teacher for 15 years in the Raymore-Peculiar School District, among others.  Her favorite and most challenging position was that of a teacher for students with extensive support needs. She taught students who were eligible for special education services under the category of autism and intellectual disability (ID).  During her years in this classroom, the students taught her more than she could have ever imagined. She now writes a blog for her company, Cook Behavior Co. In this blog, she includes information for families and teachers about navigating the world of special education in schools.  She includes stories and tips from her time teaching and consulting. The goal of Toni’s company is to enhance the educational experience of students with extensive needs by supporting families and teachers.  You can find her blog at www.cookbehavior.com.

What a Difference a Year Makes

ku-sped-logo

First year Doctoral students in the Department of Special Education at the University of Kansas share thoughts on their transition to this amazing experience!

Presence

Paloma Perez-Clark

I’ve been flooded with knowledge and wisdom from others all around me during this first year. Being present and mindful have been the keys to learning for me every day. Finding joy in my daily activities allowed me to discover many great opportunities disguised as hard work. I continue to refine my priorities and increase my focus thanks to the immense support of my family, research team, and friends!


Finding Neverland

Suman Rath

When I got my letter admitting me to the doctoral program in special education at KU, the first thought in my mind was total disbelief. I have come a long way since then yet everything is so exciting, thrilling and beautiful. The friends I have made, the great faculty I have met and the inspiring conversations I have had are all part of the journey in finding neverland! A neverland where creativity is encouraged, every student and individual is equal and there is justice, equity and fairness all around. If I ever falter, I have an extremely dedicated group of mentors, advisors and faculty members to encourage me forward. I feel privileged to be at KU and almost done with my first year. Everyday, I wake up with a purpose and a set determination to move forward. I thank my advisor, faculty and fellow graduate students for this purpose!


Proud

Kyunghwa (aka “Kay”) Park

When I came to Lawrence last summer, I was apprehensive about fitting in an entirely novel environment and surviving the 1st year of doctoral program at KU. But during this time, not only am I in awestruck admiration for the passion and scholarship evident in each professor, but I also am thankful for the privilege to sit among my inspiring fellow classmates every week. I am proud of KU special education program, my cohort fellows and myself who is part of it. The picture that best fits my year! “Bluestocking”


Growth

Heather Jeanne Forbes

The thought of moving across the country and away from my family was difficult, but I found a great deal of friendliness and support here. I’ve learned a lot about research, the field, and my own abilities. It is clear the program is designed to help you succeed, and I look forward to new challenges.


Change and the Right Fit

Haidee Jackson

This year has been an eye-opening, mind-boggling, and altogether a humbling experience for me.  I have been exposed to many different philosophies, paradigms, and practices that I had not considered before this first year.  I am grateful for the opportunity to grow, learn, and self-actualize among an outstanding group of peers and amazing, supportive faculty members.


Relieved

Jenee Johnson

This is my dog, Lala. I love her a lot.

I was anticipating a great deal of stress as a first year doctoral student; I was nervous I wouldn’t be able to “keep up” with the program. This year has been challenging, but the program is designed so you develop skills along the way. I’m still very humble, but I’m not insecure.

I’m excited to learn more and thankful to be surrounded by people who want me to succeed. 

The Department of Special Education at the University of Kansas consistently ranks as one of the top graduate-level special education programs in the country. In the latest edition of U.S. News and World Report’s America’s Best Graduate Schools, the Department of Special Education at the University of Kansas ranked number one overall. Each year, the Department continues to enhance its master’s and doctoral-level programs to ensure the best preparation of special education teachers, teacher educators, administrators, and field researchers. Students who receive their professional development through the Department have the opportunity to learn and work closely with nationally and internationally renowned faculty. The Department’s commitment to effective teaching, excellent field supervision and support for novice special educators, innovation, and leadership make the University of Kansas a great place to begin or further a special education career.

Professional and Personal Change

MARTHA ELFORD Fulbright Specialist 2018–2019

University of Jyväskylä, EduCluster Finland and Niilo Mäki Institute invited Fulbright Specialist Martha Elford to Finland to collaborate on enhancing teaching and learning with technology, and on developing current in- and pre-service teacher training practices by using digital guidance systems. Dr. Elford’s long experience and research in the area were deemed very important by her Finnish hosts. At the same time, the Finnish experience turned out to be transformational for Dr. Elford herself.

Ambassador’s reception. The second orientation day was concluded with a reception in honor of the 2018-2019 U.S. Fulbrighters and was hosted by the
Ambassador of the United States to Finland Robert F. Pence.

Dialogue Leads to Professional Improvement

I had no idea what it would mean to me personally and professionally to come to Finland as a Fulbright Specialist. My experience as a Finland Fulbrighter changed me professionally by informing me of pedagogical practices that would improve my teaching at the university level as I design and deliver online instruction. I witnessed the integration of pedagogy into every presentation and course design in which I participated — from the Fulbright Orientation to Grade 6 practice teacher. This reminded me that pedagogy should be integral and intentional for education to be done well. As a professional who focuses on teacher preparation, I attribute my experience as a Finland Fulbrighter to instilling in me the renewed purpose to infuse pedagogy into the life and work of every special educator and classroom teacher who enrolls in my university courses.

Dr. Elford in a low-tech seminar recording a lecture for
University of Jyväskylä


Another way my experience as a Finland Fulbrighter changed me professionally was by giving me a voice. I have never felt as valued and as listened to as a professional and as a person. I am so impressed by how sincerely interested and committed the educators in Finland are to learning and engaging in dialogue that leads to professional improvement. The conversations I had with Finnish educators gave me confidence that I could never have achieved as a professional without this experience.


Dr. Elford with Päivi Kananen, International Coordinator
University of Jyväskylä Open University

Finally, my experience in Finland changed me professionally by giving me the opportunity to witness first-hand what I have heard about education in Finland for the past 15 years. By seeing Finnish education with my own eyes, I have the professional responsibility to spread the good word about what we could be doing in the USA to incorporate a research-to-practice model that works so well in Finland. Although not everything can transfer directly across cultures, the one thing that makes sense to me is to at least examine more closely the research that is coming out of Finland related to Dyslexia and Literacy. This research could make an important difference in education in the USA.


Dr. Elford visiting Valteri with Project Coordinator Juha Lahti from the Niilo Mäki Institute. Valteri is a national Centre for Learning and Consulting. It supports the neighborhood school principle by offering a wide range of services for general, intensified, and special support.

The Finnish Work-Life Balance

I grew personally while in Finland through the friendships I made. I honestly felt that every person I met deposited a token of wellbeing, kindness, and value into me as a person. I still marvel at how quickly I formed relationships with the other Finland Fulbrighters. I am sure it was no accident because one of the things I learned about Finnish people is that everything is intentional and purposeful. I noticed how my colleagues in Finland had a healthy work-life balance, and I wanted to bring that home with me. Their examples made me believe it is possible for me, too. I started practicing some new behaviors while I was in Finland related to wellness and work-life balance. I find it difficult to describe how invigorating this has been for me. It is as if just being in Finland gave me permission to be my best self.


March Madness – American Voices presentation with Ruth McDermott-Levy, PhD, MPH, RN an associate professor at the M.Louise Fitzpatrick College of Nursing, Villanova University.

Finland is part of me now. Being a Fulbright Finland alum adds a dimension to my identity that I did not know was missing. Because of Fulbright Finland, I am a better professional and a better person.

Dr. Marti Elford is the Program Designer for the online High Incidence Disabilities Teacher Education Practicum program at the University of Kansas. Dr. Elford has experience as a classroom teacher, a reading specialist, and an instructional coach. Dr. Elford earned her Ph.D. in Special Education at the University of Kansas as a doctoral fellow with L-TEC, Leadership in Teacher Education Core. As a post-doctoral fellow, Dr. Elford supervised two research projects: a Poses Foundation grant studying Instructional Coaching, and TeachLivE, the use of simulation in teacher preparation programs. Dr. Elford’s research interests include the impact of coaching for pre- and in-service teachers on professional growth, using virtual learning environments, such as TeachLivE, for teacher preparation and professional development, and using technologies such as bug-in-ear to deliver immediate feedback to teachers and students.

Fulbright Finland

This article is used with permission from

Fulbright Finland News

a biannual magazine published by the Fulbright Finland Foundation.

From Aidan’s Voice to AbleVoices

Jen Vogus is a parent, educator, photographer, and disability advocate.  Her passion for photography began years ago when she started taking pictures of her son, Aidan, who does not communicate verbally.  She captured his daily life and favorite things so he could share them with peers and teachers at school, giving him a voice to share his interests and all that he is capable of doing.  She is a graduate of the TN Council on Developmental Disabilities’ Partners in Policymaking Leadership Program, a board member of The Arc Williamson County and a founding and continuing parent advisory council member of WCSLink, a special education parent organization that collaborates with the local school district.  She combines her passions for teaching, photography, and advocacy by developing and leading photovoice projects that put cameras in the hands of young adults with disabilities, empowering the participants to utilize their own photography as means of self-expression.  She has had the pleasure of presenting her story and about the AbleVoices program at a numerous state-wide and national conferences including The Arc national convention and TASH’s national conference.

Jen and Aidan Vogus

I’ve always had the tendency to notice and appreciate the more ordinary things in the world around me, but it is my experience as a parent of a child with a disability that has really heightened this for me.  My son, Aidan, began having seizures shortly after birth due to a novel chromosomal deletion.  His development lagged behind his typically-developing peers as those first several months and, eventually, years went by.  No matter how many doctors we saw, how much physical and speech therapy we did, and how much love and support we gave at home, he was not meeting those age-appropriate milestones.  Slowly, I began to understand the challenges Aidan would face and the degree of help and care that he would always need.

Aidan swinging

When reading books and talking to professionals about parenting a child with a disability, one recommendation I heard often was to put behind the expectations you had for your child before he was born.  Longing for baseball games and learning to ride a bike were counterproductive- a parent shouldn’t focus on what he cannot do, but what he can do.  Which made perfect sense to my husband and I, and we welcomed that approach whole-heartedly.  But even for the most loving and patient parent, this can be challenging at times when you are in the midst of life’s daily struggles where even the simplest of things are difficult and you long for a “normal” life for yourself and especially for the child that you love unconditionally.

Aidan and his dad

When Aidan entered elementary school, it became increasingly difficult for me not to compare him to the other students and constantly worry about what the future holds for him.  The gap in abilities grew wider and wider as each school year passed and the list of activities he could participate in got shorter and shorter. But I knew I had to tackle my feelings of worry and negativity that were keeping me from happiness and living in the moment.  That is when I decided to really embrace the “ability” part of disability… it didn’t matter what the other kids were doing- it only mattered what Aidan was doing and more importantly, how he was feeling.  I really set my mind to notice the little things more than ever.  Little things like his infectious smile, his unbridled excitement when he saw someone mowing the lawn, his quiet focus as he watched an animal go by, and his amazing connection to and love for music.  Aidan is Dave Matthews’ biggest fan!  Because, for kids like Aidan, and really all kids, the little things in life are the big things and they need to be celebrated.

Aidan saddles up!

Parents are their child’s best advocate and this role is especially important when your child does not communicate verbally and has considerable physical challenges.  At school, Aidan has limited ways to communicate with his teachers and peers and they are often not able to see the things in him that I did.  I shared Aidan’s “little things” with his teachers and aides but the stories got lost after they were told.  I tried to think of a way I could share this information in a more permanent and visual way.  So I began to photograph the things Aidan was doing and the things that he enjoys.  I sent the photos with captions to school with Aidan on Monday mornings for him to show his teachers and peers.  It gave him a voice to share his interests and all that he was capable of doing. 

Aidan swimming

Teachers and other students were delighted to learn that Spiderman is his favorite superhero, that he takes riding lessons on a horse named Lady, that he can hold his breath and swim down to the bottom of the pool, that he loves the thrill of the wildest rollercoasters, and that he gives his dad the biggest bear hugs of all.  “That is so cool, Aidan!  I like those things too!” students would say.  This feedback, in turn, helped me to realize that Aidan is, in fact, more like other kids than he is different from them.  And the other adults in his life were seeing this as well and becoming strong advocates for him.  Taking photos that made me grateful for Aidan was also a catalyst for him building more lasting and meaningful connections and interactions with his peers (who became his friends) and his teachers and the other adults in his life.

Aidan shares his photos

I began putting the photos in a book and that inspired others to contribute to it.  His teachers and aides at school also began taking photographs of Aidan during the day to share with us at home all that he does and enjoys at school.  Pretty soon his photo book took on a life of its own- he helped type the captions, glued the photos into the book, and shared his visual stories with everyone.  He has been keeping a photo book of life at home and school since the second grade and now he is a junior in high school!  And, more recently, we’ve started his own Instagram account to share photos. 

Aidan and Duke

As a result of taking these photographs of Aidan, I became more and more interested in the technical and artistic aspects of photography. I immersed myself into learning the various settings to creatively control the camera and obtain better exposures, which led me to getting involved in classes, workshops, and related professional organizations.  So capturing Aidan’s “little things” has also made me grateful for an additional reason- it’s given me an outlet that is creatively, intellectually, and professionally stimulating.

Jen working with an AbleVoices student photographer

After seeing the powerful effects of photography for Aidan, I sought ways to take the benefits to him to people with disabilities more broadly.  Specifically, I’m now using photography as a tool for communication and advocacy beyond Aidan’s past needs (specifically the photo books) and just looking at and sharing photographs, but taking them as well.  There is a growing body of research on the benefits of photography with under-represented groups, such as at-risk youth, women without healthcare, and older people with early-stage dementia for example. Putting cameras in the hands of people who feel like they “do not have a voice” as an outlet to express themselves and tell their story has become an increasingly utilized approach. Research and practical interest in utilizing photography with children and adults with disabilities are expanding.  I realized quickly that I am not alone in my discovery of the benefits it has offered Aidan.

Jen and an AbleVoices student.
Photo courtesy of Robin Conover

After learning about the photovoice approach and participating in an intensive training, I have developed the AbleVoices program, teaching photography as a means for self-expression and empowerment to young adults with disabilities transitioning from school to adulthood.  Working with a new group each semester, they engage in several getting-to-know-you activities, learn how to use digital cameras, participate in photo scavenger hunts to develop their “eye”, learn basic composition techniques to better tell their story through photographs, and have collective discussions about their photos.  The culminating experience of the project is to exhibit photos that showcase their strengths and represent themselves as individuals in a gallery space so that family, friends, and the community can celebrate their work.  Students are able to keep their camera so they can continue to make photographs after the project ends. 

An avid photographer in Jen’s AbleVoices program
Photo courtesy of Robin Conover

Having people with disabilities share and take photographs embraces the concepts of dignity, self-determination, and allows us to see new possibilities and opportunities in the lives of those we interact with and care for so much.  We’ve all heard the phrase, “A Picture is Worth a Thousand Words” (probably a thousand times!) but there is real value in this cliché, sometimes in unexpected ways. 

My challenge for people in the disability community is for them ask their family member, their student, their client, or their loved one to express themselves by sharing and taking photographs… the end result is a direct line to the heart!  What we discover is that we learn as much from them as they learn from us.  Photography is a powerful way to create a better tomorrow for people with disabilities!

Jen and AbleVoices students

To learn more about the AbleVoices program, watch this short YouTube video FHS AbleVoices or visit Jen’s website at www.jenvogus.com/able-voices.

Life, by the Numbers



Brian Herndon, PhD., is Associate Professor of Teacher Education at John Brown University.  He also holds a Graduate Certificate in Leadership in Special and Inclusive Education Program from 
The University of Kansas School of Education.  

I’m a numbers guy.  I love numbers.  I did my dissertation as a quantitative study because the last thing in the world I wanted to do was to transcribe countless hours of interviews.  At the time, there was nothing about that process that appealed to me. 

….Numbers tell a story. 

Let me tell you mine:

46 – the number of trips I’ve taken around the sun

17 – the number of years I’ve been joined on those trips with my wife, Jenny

4 – the number of children we have

1 – the number of children we have with disabilities

5 – the number of degrees/certificates I have

21 – the number of years I have been an educator

6 – the number of years I served as a school administrator

3 – the number of years I’ve served as an educational advocate for families of children with disabilities

100s – the number of times I’ve served as the Local Educational Agency Representative (LEA) for Individualized Education Program (IEP) meetings

0 – the number of times I have felt comfortable dropping my son with Down syndrome off at school

Nate Herndon

Those are some numbers!  Yet, there is something missing.  There is a narrative behind those numbers which doesn’t emerge by examining the numbers, alone.

Lived experience has a way of showing the importance of the narrative behind the numbers.  As I examine those numbers, I see one that really stands out to me.  It’s not the number of degrees I have, though that’s impressive.  It’s not the number of times I have served as an LEA in IEP meetings, though that’s also impressive.  

It’s the number that doesn’t hold a lot of value: 0.  You see, that number, above all the others listed in my story, holds a tremendous amount of value to me.  I have a son with Down syndrome.  His name is Nate. He is a very bright, articulate boy with 10 years under his belt.  He reads, writes, and understands numbers.  He’s not on grade level, but he is (mostly) educated in the general education classroom.  He has behavior issues from time to time, and this is the thing that causes me the greatest fear.

Here is a bit of the narrative that gives value to the 0:

I’m a professor at the local university in our town, and my son’s school is on my way to work, so I am privileged to get to take my son to school every day.  Every day, this is what our drive sounds like:

Me: “Nate, tell me what your day is going to look like today.”

Nate: “It’s going to be good.”

Me: “What does ‘good’ look like?”

Nate: “Listening to my teachers.  Doing the teacher’s work.  Following directions.  Being responsible.”

Me: “Very good. I hope it goes well for you today. How many smiley faces do you think you will get on your chart?”

Nate: “All of them!”  

Me: “Good deal, buddy! I hope that happens!”

As I ‘round the corner in my ’02 Outback, I see Nate’s school, peeking out from behind the trees, as if to taunt me in a childhood game.  My stomach tightens.  I become aware of my breathing.  “Just breathe,” I tell myself.  “It will be okay,” I whisper reassuringly.  “He’s had several good days in a row.  So, today should be no different,” I say to myself, trying to ease the anxiety building in my chest.  I try to relax as I pull into the center turn lane, clicking on my left blinker.  

We make the turn into the school’s driveway.

Herndon family

“Nate, take your buckles off and get your backpack on,” I tell my son.  We roll toward the drop off lane.  “Alright, get out.  Have a great day!  Be good!!”  I say it almost as if to convince myself that it’s possible as much as I am telling it to him.

My experience and my education have taught me that all children with disabilities should be educated in the Least Restrictive Environment, unless the nature and severity of the disability is such that the child cannot be educated with his or her nondisabled peers, even with the use of supplementary aids and services.  IDEA 2004 does not provide definitions for this statement beyond what you have just read.  IDEA 2004 does state that children whose behavior is severe enough can be removed from the general education environment.

“Education is the most powerful weapon you can use to change the world.”
Nelson Mandela

My 46 trips around the sun have taught me that not all school districts view special education law through the same lens.  There is varied interpretation about statements in the law, specifically when it pertains to educating children with disabilities alongside children without disabilities.  We have worked very hard to make sure that our son has equal access to the same things that all children have access to in school.  We have worked very hard to ensure that our son is educated alongside his peers without disabilities.  

Nate and his siblings after a community theatre production

It has not been an easy journey, and it has not been without great sacrifice.  I believe that the mild bouts of anxiety I experience nearly every day are related to the fact that I know all of our work on behalf of my son could come to a halt, should the district determine that my child’s behavior is too disruptive for the general education classroom.

Nate playing baseball

My education through the University of Kansas School of Education has taught me that when we educate children with disabilities alongside children without disabilities, we normalize disability.  We help those without disabilities view those with disabilities as experiencing something that is a normal part of the human journey.  Children with and without disabilities become adults with and without disabilities.  

When disability is normalized and children with disabilities have been part of the regular education setting for most of their educational career, then being an adult with a disability is not so disabling.  It is our hope and dream that our son, Nate, will be a valued and valuable member of society, contributing to the world around him in a myriad of ways.  My wife and I understand that the likelihood of this happening diminishes greatly if he ends up in a self-contained classroom.  So, even though our son is only in 4th grade, we know how incredibly important it is that we are building a solid foundation of inclusion for him.

“Inclusion is not a strategy to help people fit into the systems and structures which exist in our societies; it is about transforming those systems to make it better for everyone. Inclusion is about creating a better world for everyone.”  
Diane Richler, past president, Inclusion International

Returning back to that “0” in my story, I know that I will never feel comfortable dropping off Nate at school or waiting in the car rider line to pick him up.  I have three other typically developing children, so I know the feeling that other parents experience when they drop off or pick up their children at school.  

However, the feeling is different with Nate. If I never feel that way dropping off or picking up Nate, it will be okay.  It is minor in comparison.  The fight for my son is real, and I will not back down until he has true equality under the law.  Even if it means experiencing a bit of pained anxiety in my chest every day.

Nate playing basketball

I write this post because I believe it is important for practitioners and researchers, alike, to understand the narrative of the “special needs parent.”  I’m a member of a few Facebook pages for parents of children with Down syndrome.  We don’t experience life in the same way as other parents, and this includes the simple things like dropping off and picking up our children from school.  The anxiety we experience when we see our child with their behavior improvement plan sheet in their hand as they make their way to the car rider lane runs deep, and it extends far beyond the drive home. We want to feel “normal,” whatever that may be.  Right now, for us, “normal” is associated with anxiety and pain.

I suggest that educational practitioners and researchers note this, make the necessary accommodations for us, and include us in research on this matter.  My hope is that together as researchers, practitioners, and parents, we can create a world where disability is not so disabling and where children who experience life differently will be included as a regular part of society.  Until then, we “special needs parents” will continue to fight, both silently and vocally, yet always with the pains of anxiety and stress coursing through our veins.

Herndon family

Dr. Herndon is Director of the Missouri Center for Inclusive Education.

“We envision a world where school systems are designed to accommodate the needs of all children (Kozleski, Thorius, & Smith, 2014; Kozleski, Gibson, & Hynds, 2012; Bryk, Gomez, Grunow, & LeMahieu, 2015). Schools have, in the past, segregated children, specifically children from historically marginalized groups of people (Theoharis, 2007), and it is our hope that we change the practice of segregating children, specifically children with disabilities. Children with disabilities deserve to be educated alongside their typically developing peers, and we will always work toward that end.”

Bryk, A.S., Gomez, L.M., Grunow, A. & LeMahieu, P.G. (2015). See the system that produces the current outcomes. In Learning to improve: How America’s schools can get better at getting better (pp. 57-85). Cambridge, MA: Harvard Education Press.

Kingston, M., Richards, C., Blank, R., Stonemeier, J., Trader, B., & East B. (2014). Leading education reform initiatives: How SWIFT (Schoolwide Integrated Framework for Transformation) coordinates and enhances impact. Issue brief #2. National Center on Schoolwide Inclusive School Reform: The SWIFT Center, 1-14.

Kozleski, E.B., Thorius, K.K., & Smith, A. (2014). Theorizing systemic reform in urban schools. Ability, equity, and culture: Sustaining inclusive urban education reform, (pp. 11-31). New York, NY: Teachers College Press.

Kozleski, E.B., Gibson, D., & Hynds, A. (2012). Changing complex educational systems: A framework for collaborative social justice leadership.

In Uhl-Bien, M. & Ospina, S. (Eds.), Advancing relational leadership research: A dialogue among perspectives (pp. 263-286). Charlotte, NC: Information Age Publishing.


Never did I dream where I would be now!

Deborah Parker, M.S.E.
2018 University of Kansas Graduate
2018 NC CEC Teacher of Excellence


As I opened a box that was delivered recently, I was very excited!  It contained my cap and gown for my December graduation with a master’s degree in special education with an emphasis in autism.  I may sound just like any other graduate …except that I have taught for 20+ years and will turn 60 in January.  Why would anyone my age go back to school when they should be planning for retirement?

Realizing just how fast my graduation from KU is approaching made me reflect on my time there. It began 5 years ago when my principal asked to speak with me about working with students with autism who were coming to our school. 

I hoped this new position would provide an opportunity to learn more about helping students develop pre-academic communication and social skills. 

I also hoped I could build strong relationships with parents.  

I couldn’t wait to begin!

I immediately fell in love with my students and their families.  Most of my students were intellectually able to learn the curriculum, they were eager to learn, and our relationships were strong.  I quickly realized, however, that I would need to incorporate specialized instruction (including adaptations and modifications) as a part of class routines.  I needed to explore the use of evidence-based practices within inclusive settings where all children are fully included.

“Together”

Initially, I felt out of my depth. 

I watched videos on YouTube and read everything I could find on how to teach my students. I did a lot of soul-searching, praying, and reflecting on the past year.  I truly wanted to meet the challenge of advancing the goal of full inclusion for Pre-K children with autism.  This was what I wanted to do with my life, and I needed to return to school to learn to be more effective.  Fortunately, my husband was very supportive.

I researched various schools and decided on the University of Kansas because of their multifaceted curriculum and reputation as the number #1 public education program in the US.  I applied for their Graduate Certificate in Autism, was accepted, and began classes.  I loved the individualized feedback and communication with my instructors, learning about the most current trends, issues, and practices in the field, as well as experiencing the immediate and practical implementation of what I was learning. 

What a difference it made it my class!  My students with autism began to blossom.  They learned to follow schedules, communicate, and express the knowledge that they were in a safe and loving environment.  They began to communicate and interact with staff, students, and families through smiles, hugs, and active engagement.  As they grew, parents began asking for suggestions about how to better communicate and socialize with their students at home and in community settings.

When I completed the Graduate Certificate, I realized I wanted to continue toward my master’s degree, so I applied and was accepted into the program. Words cannot express what I have gained from being a student at the University of Kansas.  Dr. Glennda McKeithan, an instructor for several of my classes, became a mentor and friend.  She helped me to develop confidence in my knowledge and ability to teach my students and to advocate for them and their families.  I know how to assess my students’ needs, determine which of the Evidence-Based Practices would meet their individual needs, and how to collect data to measure their progress. I can interpret and elaborate on student needs/instructional practices when I speak with administrators, county staff, service providers, parents, and other educators.  Dr. Jason Travers, my advisor, has gone above and beyond in helping me to meet my graduation requirements. 

2018 Yes I Can Award
North Carolina Council for Exceptional Children

I have become more actively involved in local and national organizations such as the Council for Exceptional Children, Division on Autism and Developmental Disorders, Autism Speaks, and Professional Educators of North Carolina.  I was nominated for and won the 2018 Teaching Excellence Award, and one of my students won the 2018 Yes I CAN! Award.  I was also elected to be part of the executive boards on both state CEC organizations. I am now actively working with educators all over my state from multiple institutions of higher learning and school districts to make decisions about resources, staff development, and evaluating policies.

Deborah Parker, M.S.E and Michael Wehmeyer, Ph.D.
University of Kansas 

As I prepare to graduate from KU, I am immensely grateful for all the KU staff has helped me to accomplish. Never did I dream where I would be now.  I came to KU with little to zero belief in my abilities. I am now confident, knowledgeable, and know I can make a difference in the lives of my students and their families. I am thrilled my husband and two children will be with me as I walk down the hill and receive my graduate degree. The pride they communicate about what I have achieved gives me a feeling I cannot describe. 

University of Kansas Department of Special Education 

I am working with two colleagues on a manuscript intended for publication in a peer-reviewed journal. I will present my research at the 2019 NC CEC Annual Conference, and I am hoping to continue my education to earn a Ph.D. which will help me to learn more about my field and working with adult learners. I am inspired to help others find the passion, knowledge, and confidence I have.  All students deserve to have the best teachers!

Thank you to the Special Education Department at the University of Kansas who have developed such an effective, personalized and meaningful online program!

Unteaching and Unlearning is Intellectual!

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The “apprenticeship of observation,” introduced by Dan Lortie (1975) provides a lens through which we can consider why preservice teachers (and the general public) may feel they know all they need to know about teaching and learning.  They went to school, kindergarten through 12th grade, at least, and have had numerous teachers across their educational experience.  As a result, they may enter into a teacher preparation program with the belief that they know what teachers do, why teachers do what they do, and how they, as teachers themselves, will do it better.

High quality teacher preparation programs typically prepare candidates through a mix of theory, evidence-based and best practices, and field experiences. Teacher educators and preservice teachers often struggle with the disconnect between the preparation program’s teachings and the practices and strategies preservice teachers experience in their field placements.  This is when we must also tackle “unteaching” of misunderstood or misinformed educational practices and “unlearning” of the things we think we know about what it means to be a teacher.

white board

Unteaching

Unteaching requires us to acknowledge some of the commonly-held beliefs and practices prevalent in schools and classrooms; as well as to challenge those practices that are problematic with evidence and applicable strategies.  For example, in early childhood teacher preparation, we are charged with unteaching shaming and punitive behavior management systems such as clip charts because these systems persist in practice.  Simultaneously, we teach the evidence about social emotional development, community building, and trauma-informed care, which are all in direct conflict with systems like clip charts.  Both are critical to future teachers’ ability to eschew traditional systems and instead implement best practices in meeting the needs of their learners, teaching the behaviors they want to see, and honoring the individual and unique needs of each child.

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Unlearning

Unteaching is hard work but unlearning is even more challenging.  The “apprenticeship of observation” is so powerful.  Unlearning is the act of letting go of ideas, beliefs, and practices we believed to be true, effective, and valuable.  When presented with more compelling evidence for an alternative approach, we unlearn the previously held belief and replace it with a new belief.  Years of watching disruptive kids be removed from class, conforming to threats of punitive consequences (e.g., your grade drops one letter grade for late submission), and expecting school success to be measured by compliance with rules, many future teachers struggle to adopt more equitable, intentional strategies focused more on teaching than on punishment.  As I have become more intentional in implementing unteaching pedagogy in my courses and interactions with preservice as well as inservice teachers, I have become increasingly aware of the challenges we face in creating inclusive, accepting, responsive learning environments for learners and teachers.

In an attempt to “bridge the gap” (is this the most overused phrase in education?), I, along with my colleague and friend at James Madison University, Dr. Mira Williams, started a website with an intentional social media presence in an effort to make our own unteaching pedagogy and unlearning practice visible to other teacher educators, teachers, and learners.

Social Media As A Tooleducation-1580143_1280

We started by building a Facebook page for sharing blog posts and resources with a growing community of teachers.  However, on advice from a trusted marketing expert/friend, we branched into Instagram.  Do you know that there are thousands of teachers on Instagram who post about their lessons, their resources, their struggles, their wins, their processes, their thinking, and their outfits of the day?  Neither did we.  The hashtag teachersofinstagram has over 3.7 million posts as of today and the Instagram teacher leaders boast upwards of 40,000 followers.  Where are teachers going to share resources, ask for support, get new ideas?  Instagram.

Our site, @teachingisintellectual, attempts to provide bite size best practices to our small but growing community of followers.  We use apps such as Word Swag and PicLab to create visuals in order to communicate an idea or to pique interest for a click over to the blog.  We engage with the growing number of teachers we follow as well in order to contribute to the community and build relationships.  We have learned so much about what teachers want support with, where they look for solutions, and how they challenge each other on matters of unteaching and unlearning simply by following, participating, and listening.

The culture of education dominating teaching Instagram is in many ways different than what those of us who no longer teach in PK-12 environments may believe.  The #teachersofinstagram have taught us innovative classroom practices.  For example, just this weekend, a third-grade teacher we follow on Instagram posted an anchor chart she made with her students about consent.  The post has since gone viral and national news outlets such as CNN and MSNBC ran stories about her post.  Popular education Twitter accounts have tweeted about it with many prominent voices in education boosting its’ reach.  Teachers are using their social media presence to get the word out about their work.  They are telling their own stories.  We are simply listening. We then use our resources as partners to respond in ways that are useful and supportive of the unteaching and unlearning of flawed practices with a focus on replacing them with better strategies.

We aim to grow our reach in order to use our platform to inform our research but also to provide a hungry, deeply committed community of educators with the resources they are seeking to unlearn ineffective practices.  Additionally, providing preservice teachers access to teacher leaders on social media who are making their innovative, creative work visible, shows what is possible.  The #teachersofinstagram are modeling best practices in real time with real students in real classrooms.  We believe partnering with these teachers and learning from them could be a critical 21st century step in bridging the much-talked-about research to practice gap.

 

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Jen Newton is an assistant professor at OHIO University.  Dr. Newton’s research interests include strengths-based approaches to families, early childhood inclusion, and inclusive teacher preparation.  She regularly presents locally, regionally, and nationally on a range of inclusive educational topics.

She served as an early interventionist and an inclusive prekindergarten teacher prior to pursuing doctoral studies.  Dr. Newton earned her doctorate in special education from the University of Kansas and spent four years as an assistant professor at James Madison University in Harrisonburg, Va., then three years at Saint Louis University before finding her home at Ohio University.  Follow her on Instagram and Facebook @teachingisintellectual and her website www.teachingisintellectual.com

 

 

 

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