Paving the transition path to help families find hope and practical advice

Adam Kantrowitz

When my son, Adam, was diagnosed with autism at the age of two and a half years old, my world as I knew it was forever changed. Not only was I a new mother with a six month old daughter, but I now had a son with a disability, one that few understood. In preparing to raise a child with autism, I quickly learned that I needed to become a staunch advocate for my son. Advocate and mother are words that seem innately interchangeable, but as a mother living with a child with autism, you become an advocate in ways never before imagined.

With a diagnosis in the range of moderate to severe, it was imperative that Adam get the early intervention and appropriate support he would need in order to flourish. Trying to find the appropriate preschool for him would prove to be a daunting task, one that I had little knowledge about and everywhere I turned it seemed others did as well. I felt lost, confused and very overwhelmed. My husband and I were trying to meet the needs of both of our children and it was most challenging. We knew that we needed more information in order to make educated decisions regarding Adam’s overall well being and that of the family’s as a whole.

I began researching and reading every piece of literature that I could obtain. Following more than one year of research, the information I found most promising in meeting Adam’s needs was that of 24 hour educational and residential programming. While my husband and I struggled with the notion of having our three and a half year old son enrolled into a residential school, we knew that Adam needed more than we could provide. We began searching for a school that we felt would provide an effective approach within a nurturing environment, one that would offer behavioral, physical and emotion support. We were also very frightened for our son and his future, yet equally if not more, determined to provide the best for him.

As a result, my husband and I began exploring potential schools in New York, Connecticut, New Jersey and Florida, with the latter in the mix because that was where my mother lived. We knew that if we were going to enroll Adam in a residential school, we would not only want it to be a place that was highly regarded, but also trusted. Adam’s learning was important to us, but even more important was our need to be reassured that our son would be safe and happy. Such a decision would require a great deal of change for all of us. It meant uprooting our family, leaving our jobs, our community and other family members behind, however we wanted what was best for Adam and being miles away from him was not an option.

One day, our search came to an end and our hope renewed while watching a segment on PBS regarding schools for individuals with autism. The documentary featured a school called Boston Higashi. Higashi, an international school for autism, based on the visionary methodology of the late Dr. Kiyo Kitahara of Tokyo, Japan called Daily Life Therapy, offered the holistic approach to education that we were looking for and that individuals with autism would benefit from. We scheduled an appointment and traveled from our home in New York to Massachusetts for an interview. We found the school’s educators to be informed and their strategies to be in alignment with our values and beliefs. Following the interview, Adam was accepted into the school and we made the decision to enroll him.

As I talk about my personal journey with Adam and the trials and tribulations throughout the years, it is his first years that were the most emotionally trying. The idea of sending our three and a half year old son to a residential school brought about so many emotions, including separation anxiety, loss, helplessness, and sadness. For Adam’s sake, I knew it had to be done.

After we consulted with school professionals, we agreed that it was best to have Adam attend both the day school and the residential program full time during the week and to have him home each weekend to be with his family, including holiday and vacation time. This was an ideal plan. However, we learned that before we could make the transition to weekend visits, a separation process would be employed.

The separation process entailed approximately three months wherein we would not be able to have contact with Adam. The process was in place to help Adam learn greater independence and to use newly learned skills pertaining to every day life both academically and socially. It was highly recommended by Higashi educators who believed that Adam’s age was ideal to begin behavioral modification. Such a transition would prove to be extremely difficult for us both, yet the best decision for Adam in the end. As we charted through unfamiliar territory I was filled with questions and self doubt. The one thing that helped me to remain positive was in knowing that I was doing what was best for my son.

Adam attended the Boston Higashi School in 1988, the first year that Higashi came to the United States, with the mother school located in Tokyo, Japan. As we made the trip to Massachusetts to bring Adam to school, I can remember being consumed in thought of parting ways with my son, still very much a baby, for a three month period and how that would affect us all. Three months is a long time, especially for an absence between a mother and her child. Adam and I had been inseparable until this point and I knew it was going to be the hardest thing I ever had to do. What if he thought I abandoned him? Would he think that I didn’t love him anymore? How would he interpret the separation time? Surely not in the way an adult would, it may feel like forever to him. I wasn’t sure how I would manage such an emotional transition and wondered if I had the strength to say goodbye to Adam.

Upon our arrival at the school, Dr. Kitahara greeted us, along with other teachers and administrators. Although I couldn’t speak with her directly due to differences in the languages that we spoke, it was her first words to me through translation that made future possibilities for Adam seem within reach for the very first time. Understanding the challenges associated with transition, she knew exactly what to say. Her words were simple, yet profound. She said, “some times you have to say goodbye before you can say hello.” As I listened to her words, I realized that I would be saying goodbye to my son who was challenged in every aspect of his life, but that with the help of the school, I would soon be saying hello to a son who now possessed some of the necessary tools to get through every day life.

As I began packing for our move to Massachusetts, approximately one month into the three month separation process, I received a call from the school physician. He explained to me that Adam was loosing his hair and that he felt that the loss was a direct correlation to Adam’s separation anxiety. I was aghast with this news. My child was hurting. He could not understand why his mother was not by his side. He requested that we come right away to visit Adam. I would not have had it any other way. We had a family member watch our daughter and my husband and I left immediately.

Once we arrived at the school, I went to Adam’s classroom. I walked in, but Adam’s back faced the door and he did not see me. When I approached him, and he saw me for the first time in a month, he placed his small hands onto my face, as if examining me, and threw his arms around me. I was overcome with emotion and so was he. I took him by the hand and led him out of the classroom so I could talk to him privately. His teachers advised that I speak to him as if he understood every word I was saying. I spoke to him from the heart, but with every intention of helping him to understand that he was not being abandoned. I told him I loved him very much and that I had to pack our belongings from home so that I could move to Massachusetts to be with him. I knew he understood, as he once again put his arms around me and hugged me. Without him seeing, I wiped the tears from my face as I led him back into the classroom and reminded him that his father and I would be back to see him soon and that he needs to do his very best to learn all that he can in school. I left feeling more concerned than ever before for my son’s emotional welfare, as it was not known how he would continue to fair in my absence.

It would only be two weeks later on yet again another road trip from New York to Massachusetts, this time for good, that I would receive a follow-up call from the school. Fortunately, it was good news. Adam’s hair was growing back. As I breathed a sigh of relief, I knew that this was only one transition of many that we would experience together. I had already learned so much and had grown from the many facets within this emotional transition. I learned that there is no love like a mother’s love and that as mothers we have an unyielding inner strength and determination to do whatever we must to ensure our child’s well being. I also learned that there would be many more transitions throughout Adam’s life that I would need to direct, support and provide for. In essence I would continue to be the staunch advocate that a disability like autism demands. I would be my son’s strongest advocate.

Transition does not end here. There is always more to prepare for and more to study and experience. For Adam and me, there would be the transition from childhood to puberty, a prerequisite to the bridge from teenager to adult, with the latter requiring a move for Adam from the school into community programming. There would be one emotional transition after another with each transition different than the last. In some ways it would become easier, in that as a parent you gain greater confidence with each successful experience, yet new experiences are equally challenging, requiring new learning in a sea of uncertainty.

Join me in learning about my continuing journey with Adam. Learn about the transitional phases that ensue and how as a parent of a child with autism, it is critical to gain all of the knowledge you can about the transition process as a whole. My story is one of many. The need for support groups, networking and knowledge surrounding available services is critical. What you need to know in order to successfully navigate the myriad of complex processes within the system is paramount. More specifically, it is my desire to offer support to individuals with autism spectrum disorder and other disabilities to best prepare for the transition of turning 22. My website is designed to provide the tools through testimonials, consultation and fundraising measures in order to prepare them before and during their transition from the school delivery system into the community. This road is not one to be traveled alone. Together we can make a difference.

Website Builder