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For the Love of Sophie Annalee

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Editors

Sorcha Hyland
Lara Mann
Deb Griswold
Elizabeth Kozleski

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.


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