Tic Toc Autism Clock: A Guide to Your 24/7 Plan

By Elizabeth Obrey and Linda Barboa

Autism does not sleep. When night falls, families everywhere tuck their children into bed for what will typically be a good night's sleep, but the care required by the child with special needs continues around the clock. Like Grandfather's pocket watch, if not wound consistently, the ticking will stop. Without proper early intervention there is a very real danger of watching a child fade from this world into a world he has created in his own mind. There is a push toward early diagnosis and education because it is universally understood that early intervention is vital for optimal gain. The younger a child is, the better chance of increased efficacy and possible re-growth of neural pathways. Teachers and therapists often provide some services during the day, but the family is the 24/7 team.

• Language: English
• Publisher: Goldminds Publishing
• Release date: Oct 4, 2015
• ISBN: 9781942905608

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Introduction

A Look Back by Elizabeth

When my daughter was six years old, she said to me, If I were you and you were me, and you were lost I would come find you.

To completely enjoy and connect with this book you need to know my family. As I sit on the couch after an eight hour mental health first aid training, I am exhausted. But to wait until I am rested and seated in an organized home office? Well, let’s just say it will never happen, so I begin. I am 46 years old, if I remember correctly, and I need glasses. As I profess that wrinkles are a sign of a life well lived, reading glasses are a rite of passage I dread.

Nicole was born 22 years ago. Initially overjoyed with our baby girl, I quickly began to struggle. I tried so hard to be a good parent. I loved this baby, but as each new day came she responded less and less. I remember watching her struggle with toys at the age of 18 months and realizing she had no idea who I was or why I was there. It broke my heart. As she grew I was devastated. Within her first year I began to wonder how other people did it. I was surprised I wasn’t a better mother, or so I thought.

At 2 years and 3 months, after making and breaking appointments for 9 months, we began our journey with autism. A month later I sat with her on a couch at church. Across from us another child the same age was asking his mother questions as they looked at a book together. Nicole snuggled against me. I was startled to have her show me this affection. I looked down and saw silent tears rolling down her cheeks. I knew then that there was a child aching to come out of this shell, or world as it is commonly called. I promised her we would find a way. Later that week we started our journey.

At two and a half she was formally diagnosed with autism. At this point she made no eye contact, she did not speak, hardly slept, seemed in pain, was frustrated, would hurt herself, and had seizure-like tantrums that lasted 45 minutes to two hours all day long. She screamed so hard that blood ran from her nose. Nicole would scream and beat herself and anyone who approached her, all the while signing please help! I remember many nights kneeling by her bed praying that she would just be alive in the morning. I could not understand how such a small child could endure such intensity.

We began early intervention which took every ounce of my strength and the dedication of many family members and friends. Within 9 months Nicole began to add words to her almost 200 sign vocabulary. At four and a half years we took her out of the special needs program and placed her in a private school. With the help of a caring teacher she was able to make a full transition.

While her journey is far from over, she is self-sufficient, has a career she loves and bought her first car. Nicole is not free of her autism but has learned to cope with it. Autism has become part of her personality, which allows her to see the world in a very special way.

My second child, Brooke, is 19. She is attending college with scholarships, and is living with intense allergies. She has discovered a love of dancing. She is a joy to her family, never complaining that because of her brothers’ therapy costs she had to start college with a new set of braces on her teeth because funds were never there before.

Samantha is 15, a trained animal handler and is an international baccalaureate high school student. A tiny gal with scoliosis, she works out to be able to hold the owls up when presenting. She is a sister who more often than not is caregiver to her brothers. Sam is a talented artist with the goal of being an animator.

As my eyes are wet with each yawn I want to tell you about Nathan, but first I want to explain why I am so tired tonight, more than most. After a botched swim trip yesterday Nathan could not let it go. Samantha and I took shifts last night making sure our swimming-obsessed Nathan did not leave the house on his own. This night it became real. This had been a year that had set a precedent number of drowning of children with autism being reported in the media. Those families brave enough to share their pain protected my child last night. Thank you for helping me understand it is a real first time danger. Bless you.

Twelve years ago Nathan joined our family. Our first boy. A little guy who wasn’t able to come home with us. Rather he went to the newborn ICU with oxygen and heart complications. As the years passed the diagnoses came. Congenital heart disease, autism, growth delay, brain damage, apraxia and chromosome abnormalities. Despite his challenges and with intense therapy beginning at 14 months, by age seven Nathan began to read and could speak spontaneous 3 to 4 word sentences. They were need based, but he was off to a great start. Five years later, following a series of regressions and autoimmune complications Nathan is nonverbal and trying to rebuild lost skills.

Chase is nine. A perfectly wonderful surprise addition to our family. We enjoyed 6 weeks of bliss at his birth. Then it began. The twitching, the screaming, the not sleeping-ever! Misdiagnoses, hearing complications and autism delayed an epilepsy diagnosis. With a complete set of diagnoses, including chromosome abnormalities and a treatment plan in place Chase began to progress. Today he never gives up as he desperately tries to make friends. He does not understand why his efforts are not reciprocated. He is excited about his transition to church scouts, park board soccer and moving from hippotherapy to regular horseback riding lessons.

Then there is Daddy. He is gone most of the time doing contract work out of state. We look back wishing we had tended as much to our marriage as we did to medical appointments and therapies. The strain on a family that struggles with autism is incredible and very detrimental. Parents may be consumed with guilt. It is extremely difficult to keep a family together and loving under these conditions.

I am grateful to my extended family and friends without whom life would be a battle lacking a victorious outcome. Rather, now it is a series of redefined achievements and successes.

Throughout the years, many medical professionals and educators have passed through our lives. Some were short relationships, while others were more enduring. Through the speech clinic at our local university where Nathan received services, I met Dr. Linda Barboa, one of the supervisors at the clinic. When I met Dr. Barboa I knew I had met a kindred spirit. When Dr. Barboa later accepted an appointment to become the director of the autism center that my boys attended, the partnership was rejuvenated and strengthened. We were a well matched alliance-a veteran educator and a parent of multiple children on the spectrum. We both had words and experiences to share with others, and we became a team. We worked shoulder to shoulder to not only educate my sons, but to help parents of newly diagnosed children navigate the system. It was from that challenge that the spark was lit to write our first book, Stars in Her Eyes; Navigating the Maze of Childhood Autism. Before the ink was dry on that book we realized the need for a follow-up book and we began writing this manuscript.

Whether your child is lost in another world, or merely shows the suggestion of autism, time is of the essence. Children want to be reached, but without proper intervention there is a risk they may further close themselves off. In this book, Dr. Barboa and I offer to you a 24/7 Plan© and the hope needed to make every minute count. Please use this as a workbook. The wide margins are designed for your personal notes in order to make Tic Toc your own.

A Look Forward by Dr. Barboa

Often a child with a developmental disability requires support 24 hours a day, seven days a week. Like Grandfather’s pocket watch, if not wound on a consistent basis, the ticking will stop. Without early intervention you risk a very real danger of having your child fade from this world to one he has created in his own mind. If you learn nothing else from these words, please understand that time is of the essence and share that message. Remember though, it is never too late to begin or begin again. There is a push toward early diagnosis because it is universally understood that early intervention is vital for optimal gain. The younger your child is, the better chance of increased efficacy and possible re-growth of neural pathways.

While treatment at a younger age is preferable, understand that whatever age your child is, keep working with him, because there are still gains to be made. We are seeing older children challenge the idea that only the younger set is likely to succeed. Never give up because you have an older child. Liz Becker, author of Autism and the World According to Matt continues to chronicle the advances that her son Matt is making toward living independently as a young adult. She lovingly shares his amazing achievements and milestones. So although early intervention is optimal, as Dr. Temple Grandin tells the world, It is never too late to expand the mind of a person on the autism spectrum.

Part I of this book provides the foundation to understand autism and how it may be affecting one or more of your child’s senses. This knowledge is your building block for your child’s home program. In these introductory pages we introduce you to the idea of creating your own 24/7 Plan© to guide your child through life. Here you will find templates and examples for your individualized family program. Although you will eventually design your own forms and templates, having this pattern to follow will help you along that path. We discuss the various strategies and techniques available to youin essence your own personal toolbox.

Part II introduces the reader to a variety of interventions that you may tailor to meet your child’s communication, behavioral, and social and sensory needs. We share strategies and techniques to assist you in teaching your child through play, reading, language activities, social activities and cooking. This section provides a glossary style, comprehensive listing of helpful strategies and tools to fully understand autism and implement whichever lessons apply to your child. Each of 26 lessons addresses various aspects of communication, behavior, sensory needs and social skills. Elizabeth shares Parent to Parent Tips and I include Professional Tips for each lesson.

My lengthy career as a speech-language pathologist (SLP), a special education director, a university professor, and the director of the autism center have allowed me to learn a tremendous amount from many children and their parents. Working both in the United States and Europe has given me a global perspective on treatments for children with special needs. My work in the university gave me access to research and instructional techniques which I am honored to share with these families. Including Elizabeth’s experiences as a parent of three children on the spectrum enabled me to breathe life into the written words as we joined together to record them here for other parents.

As we worked to weave all the various interventions into one cohesive 24/7 Plan©, Elizabeth described the interdependency of the different techniques this way. I know in my heart sign language unlocked the door to my daughter Nicole’s world, sensory integration let us in, behavior therapy made it a joy to be there, and time brought her back to our world. Our challenge in this book is to give the reader insight into your own world of possibilities.

If you look at the seemingly insurmountable task you have ahead of you and say, I just can’t do it, think for a moment about those parents who have lost a child to illness, disease or tragic accident. What they wouldn’t give for more time or even one last chance to hold their missing child and say, I love you.

Abraham Lincoln said, The good thing about the future is that it comes one day at a time. Your time is here and now. The future belongs to your child. Armed with the information in this book, your own notes written in the margins, and the knowledge that time is your most precious resource, let’s get started!

Part I

The Basics

Chapter One

Getting Started

"Let him who would enjoy a good future waste none of his present."

Roger Babson

Autism does not sleep. When night falls, families everywhere tuck their children into bed for what will typically be a good night’s sleep. But the care demanded by the special needs individual continues around the clock. Teachers, therapists, and medical professionals often provide some services during the day, but the family is the 24/7 team. Moments are precious and time is valuable; use both wisely.

To help you along this journey ahead of you, it would be beneficial for you to gather some good, comprehensive guides and introductory books about autism spectrum disorder, such as Stars in Her Eyes; Navigating the Maze of Childhood Autism, by Dr. Linda. Barboa and Elizabeth Obrey. Start to build your own personal autism library. As parents and educators who love children with autism, we have learned that your understanding of autism is the greatest tool available to you for getting results and decreasing frustration. This understanding becomes the cornerstone for the 24/7 Plan© you will build. As your family navigates through the maze of childhood autism you will continually be searching for clear, reliable information. You will find yourself reaching for these books time and time again as new issues arise. Over the years your child will grow and change, and your family library will remain a life line. Throughout this book, in our discussions of various topics, we will suggest books which we have found to be particularly helpful.

The magnitude of what you are undertaking may seem daunting. Pace yourself, be patient when looking for results, celebrate the small accomplishments, and be leery of quick cures or therapies that have a single narrow focus. However, be careful not to dismiss your child’s options too quickly. If you don’t understand the science behind a certain therapy, that procedure may seem odd to you. This is when you should seek advice from your team of doctors and therapists, talk to other families and educate yourself before making a decision about whether to use it.

The American Psychiatric Association produces a manual which is used by clinicians and researchers to diagnose and classify diseases and disorders. This manual, known as the DSM, was recently updated to its fifth revision. The DSM-5 has changed how the diagnostic professionals define, categorize and diagnose autism. What was previously delineated as many different diagnoses along an autism spectrum are now largely grouped together into one inclusive diagnosis called, autism spectrum disorder.

This book, or really any book, is not to be used to self-diagnose. There is a very real and serious consequence of self-diagnosis or parent diagnosis of a child. A self-fulfilling prophecy happens when it is so strongly believed that a person has a certain condition and is treated in such a manner as having the disorder that the person begins to actually develop those traits. By treating a child who does not have autism as though he has autism, you may actually be training him to display autistic characteristics. Doing that will greatly decrease his quality of life and his potential for a bright future. The professionals you are working with are trained and should properly diagnose your child. If you feel a diagnosis is incomplete or incorrect, please seek a second opinion. As a parent, trust your instincts. People do make mistakes, while others try to diagnose beyond their abilities. Persistence may be required. Be sure the professionals who are diagnosing your child are trained in autism and are up to date on the latest criteria for diagnosing Autism Spectrum Disorder. If you have more than one child and the older one has autism, the younger ones may just mimic the older one, as can happen in most typical families. Don’t mistake a simple mimicking action for autism in a sibling. The behaviors and symptoms of autism will not be fleeting or inconsistent for a child who will receive a diagnosis. However, as you have already learned, siblings are not immune to receiving the same diagnosis.

Childhood Autism

A child with autism lacks the normal developmental processes and sequences a typical child goes through. There are delays in many areas. The list includes, but not exclusively: language, speech, nonverbal communication, cognitive (thinking), adaptive (physical) behaviors, social behaviors and social relations. There are sensory processing deficits and autism is often accompanied by multiple other diagnoses. With that said, there are children who have achieved developmental milestones but later regress in those skills. They also can receive a diagnosis of autism.

As you begin to plan your interventions, you will find many lists of characteristics of autism. While of value, no list can ever match up definitively to your child. The following are common areas of concern, or warning signs that you may want to address in your 24/7 Plan©.

Lacks appropriate eye contact; avoids sustained eye contact

Delayed or lack of spoken language with no means of compensation

Lacks appropriate gestures used for communication. May use some broad gestures to fill needs (leading by the hand to refrigerator to receive a drink)

Lacks facial expression

Repeats speech sounds heard from others (echolalia)

Inappropriate response to sound; including no response

May seem to want to be alone, withdrawn

Has a hard time interacting with others

Fails to reciprocate socially and emotionally

Laughs inappropriately

Lacks make-believe and imitative play for developmental level

Resists cuddling (may cuddle on own terms)

May not like touch or may seem not to feel it

Lacks fear of danger (or may be afraid of things not typically feared)

Has outbursts or severe tantrums

Preoccupation with behaviors that are abnormal in intensity or focus

Preoccupation with odd or repetitive play

Needs order

Can’t deal with change

Has nonfunctional routines or rituals (such as rubbing cheeks before going through a door, flipping lights on and off repeatedly)

Sustained repetitive motor mannerisms (hand flapping, spinning, head banging, any self-stimulating activity)

Obsesses with objects or parts of objects, including collecting

Lacks appropriate response to pain, including insensitivity to pain

With this list in mind be aware that other medical or psychological diagnoses may be found to affect your child. These co-morbidities will need attention, too. After 6 months of almost daily therapy, Chase had become very compliant and even joyful during therapy. Yet, at every 6 weeks evaluation his test scores remained the same. No progress in his skills was noted. None! Then came a second diagnosis; complex-partial epilepsy. Sensing a mother’s fear about starting her 3 year old, who couldn’t communicate, on anti-seizure medications, the neurologist began to speak. You want all of these hours of therapy to work, right? You have to get his seizures under control first. That night Chase slept through the night for the first time in a long time. Short term memories went to long term storage. Lessons learned during the day were now taken to the next day and were no longer forgotten. You must deal with the medical or psychological barriers preventing you from helping him succeed socially and cognitively.

It is most fundamental to understand what autism is and how it affects your child. With that understanding you will have the knowledge and confidence to begin and maintain your 24/7 Plan©. Autism in its most basic form can be described as hypersensitivity (overreacting) and hyposensitivity (underreacting) to stimuli, and communication barriers. Internal stimuli stem from feelings inside the body. Environmental stimuli come from outside the body. Stimulation is anything that creates a feeling which