Learning About Autism: One Mother's Journey of Discovery and Love: A Charter School, Teaching Methods, & Resources

By Karen Ingalls

Carol Tucker travels the road of autism and cerebral palsy with her adopted son, Justin, now a young man who routinely astounds physicians with his achievements. She is a special-education teacher, recognized leader in children’s advocacy, and one of the founders of Florida’s first charter school for autism, where she served as director. Through photos and stories, bestselling author Karen Ingalls shares Carol’s journey, then offers a wealth of resources, teaching methods, school choices, and financial-assistance options.  With Karen’s unique insight, Learning About Autism shows how one very determined mother and her family can rise above daunting challenges to thrive and find happiness.

• Language: English
• Publisher: Fresh Ink Group
• Release date: Aug 17, 2021
• ISBN: 9781947893429

Book preview

Preface

Everyone has inside of her a piece of good news. The good news is that you don’t know how great you can be, how much you can love, what you can accomplish, and what your potential is. —Anne Frank

I met Carol Tucker at a gynecological cancer support group meeting, which was her first time to attend. It is always an uplifting, informative, and beautiful time. However, at this meeting, the guest speaker was disorganized and presented her topic on meditation so poorly most of us were more agitated than relaxed.

I watched Carol’s body language and knew she was not getting the information and support she came to receive. As soon as we exited the room, I went up to her and introduced myself. When an energy of love and compassion passes through two people, something special has occurred. That type of energy passed through me. She felt it as well. We talked for a long time and a deep friendship developed which continues to this day.

Carol is an observer. She listens, takes everything in, analyzes, and then decides whether to speak up or remain quiet. When she speaks up, her words are worth listening to, and positive actions usually follow.

For the past two years, she has shared about her life, family, career as a special education teacher, the adoption of two sons with special needs, and her role as a co-founder and Director of Princeton House Charter School.

From the story of Justin, who was born with cerebral palsy and autism, the reader will understand that anything is possible. The more I learned about Justin, met him, and watched him, the more convinced I was that he was a miracle child whose story would bring hope and inspiration to others.

Joshua who has Down syndrome brings to light how lovable he is, intelligent, athletic, and yet has difficulty with behavior when he is not the center of attention.

This is a book about autism, cerebral palsy, and Down syndrome. It will provide information, resources, hope, and reassurance to parents that they are not alone in what can appear to be a lonely and overwhelming life.

I had published four books, written several articles, and had received recognition and awards. Now, I wanted to write a book particularly about Justin’s miraculous journey, the incredible love and accomplishments of Carol and Allen Tucker, and the establishment of the first charter school in Florida for children with disabilities.

The first time Carol and Allen saw a photo of Justin, their spiritual sides saw a child who was beautiful and special. When they saw him in person, their eyes saw the results of a stroke, but most important, they saw his eyes reflecting the real Justin. They saw his soul.

It was with Carol and Allen’s, perseverance and unconditional love plus the mysterious God-given gifts of strength and resilience that made Justin their miracle child.

Out of difficulties grow miracles —Jean de La Bruyère

Introduction

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.

—Christopher Reeve

Justin Andrew was born in Orlando with several health challenges, but he had an inner spirit that only needed and wanted love. He had to wait a little over three years for that love to come into his life.

Some parents choose to not raise a child who has a serious health disorder or disability. Justin’s biological mother knew she could not raise him because of her addiction to drugs. He spent his first nine months of life in a hospital, had surgeries and treatments, and then discharged with diagnoses of cerebral palsy, failure to thrive, and severely handicapped to a foster home for the terminally ill in Kissimmee.

Justin’s mother nor anyone in his family ever came to see him or make any contact.

In another area of Orlando, lived Carol Tucker. She and her husband were searching for a young child or infant with Down syndrome to adopt. She was a teacher for children with various disabilities and a soon-to-be empty nester.

Early in her childhood, Carol felt compassion for those who were retards, which in the 1950s was a common and acceptable name for children with learning disabilities. Her compassion extended to their families. She made friends with those who had difficulty learning or verbally abused with name-calling.

When Carol Blanton Tucker was a shy teenager, she did not expect her future would include being a mother of a severely handicapped child. Yet, when she saw Justin Andrew for the first time, she knew there was something special about him.

This young boy filled their hearts, and Carol and Allen knew he was to be in their lives. Their unplanned journey with autism, cerebral palsy, and behavioral issues led the family to new experiences and accomplishments. When the family later adopted Joshua, a child with Down syndrome, another world filled with love opened up to them.

Justin and Joshua’s adoptions taught them many things about being a parent of a child with special needs. They learned about the lack of information, understanding, and resources for families. They gained medical knowledge about various surgeries and treatments, but regretfully they discovered the medical community did not always have the knowledge and empathy for those with handicaps.

Justin’s diagnosis of autism opened another world for Carol as a mother and educator. She was the primary founder and then the Director of the first charter school for those with autism in Florida. She advocated for the children and their families. Carol designed behavior and learning programs based on her education and experience.

From the story of Justin, the reader will learn about Autism Spectrum Disorder (ASD) and cerebral palsy. Sometimes Autism Spectrum Disorder and cerebral palsy occur together, but they are two different disorders and do not originate in the same part of the brain. Repetitive actions and certain social behaviors characterize ASD. Whereas cerebral palsy involves motor skills, such as balance, tremors, and strength.

The reader will learn about Down syndrome’s causes, symptoms, and traits. Joshua taught the Tucker family how to manage his need to be the center of attention, they provided opportunities for his athletic abilities to be proven, and encouraged his intellect with the availability for higher education.

In 2020, the CDC reported that approximately 1 in 54 children in the U.S. have autism spectrum disorder (ASD), according to 2016 data. (CDC. 2020). About 1 in 345 children (3 per 1,000 8-year-old children) in the United States have cerebral palsy. (CDC. 2020).

In this book, state and federal resources, family programs and schools, and financial responsibilities will be presented. There is information about the effects on a marriage and the family unit, a career, reactions from friends and family members, and the individual parent.

In addition, certain education and teaching programs are recommended. There will be definitions and explanations of such terms as IEP, Matrix, ABA, DSM, PPD-NOS.

Since there are no known cures for either disorder, there is information about various so-called cures to be avoided.

There are many questions and concerns that parents have as they raise their child with special needs. Finances and what to do when the child outlives the parents are major concerns.

The brain is an amazing organ from which both ASD and cerebral palsy originate. Research continues to try and understand the exact causes and hope to find a cure for either of these disorders.

At the end of the book there are lists of references, resources and recommended reading available.

From Learning About Autism: One Mother’s Journey of Discovery and Love: A Charter School, Teaching Methods, & Resources, the reader will learn the important message: anything is possible when there is love. Joshua filled Carol’s dream to raise a child with Down syndrome beyond what she could have ever imagined.

It was Allen and Carol’s unconditional love that opened Justin’s inner spirit, allowing him to become their miracle child. Without Justin being a part of their lives, one wonders if Princeton House Charter School would have become a reality.

Out of difficulties grow miracles. —Jean de La Bruyère

Justin:

The Miracle Child

A child is like a butterfly in the wind. Some can fly higher than others, but each one flies the best it can. Why compare one against the other? Each one is different, each one is special, each one is beautiful.

—Anonymous.

His First Four Years

Justin came into this world on April 1, 1989, with challenges that few newborns survive. After his premature birth at twenty-four weeks’ gestation, Justin spent nine months at the Arnold Palmer Hospital in Orlando, Florida. He had several serious health conditions that needed surgeries and treatments.

His mother was a drug addict, and she continued to use drugs during her pregnancy. She had four other children, one of whom died shortly after birth. The illicit drugs and alcohol his mother took crossed the brain barrier, which is a network of blood vessels and tissue that helps to prevent harmful substances from entering the brain of the fetus. This fetal ingestion caused a stroke on the left side of his brain. A CT (Computerized Tomography) scan of his brain, shows only blackness on the left side.

The stroke caused right hemiparesis (inability to move the right arm or leg) and cerebral palsy, a neurological disorder caused by injury to the brain. Justin showed the typical symptoms of cerebral palsy: inability to hold his head erect and stiffened legs, overextension of his back and neck when picked up, and his right thumb persistently bent toward the center of his palm.

There is no surgery or medication to treat this condition. Only physical, occupational, speech, and behavioral therapies can help those with cerebral palsy to possibly walk, stand, sit, and talk. There are many factors involved in the rate of success of such therapies.

The doctors surgically placed a shunt into the left ventricle of his brain. It went down the side of his neck and ended in his abdomen. Its purpose was to correct the hydrocephalus (an excess of central spinal fluid), which the shunt drained out. Doctors repeated this surgery several times over the years.

Necrotizing enterocolitis (NEC) developed in Justin’s intestines. This disease can occur with premature infants who receive only formula, rather than breast milk. In this condition, bacteria invade the walls of the intestine. Inflammation sets in. This event can create a crack or gap that allows nasty germs to leak into the abdomen. If not treated, it can lead to serious infection and death. (Web MD. 2020).

The surgeon who operated on Justin decided after the second surgery to leave his abdomen open for a significant amount of time. During this time, Justin received