December 16, 1995 marked a special day for my husband and me. It was the birth of our first son, John Taylor Queenan, who we called Taylor. A happy couple now became a family. We had dreams of a perfect and happy life for our son. Taylor met the typical developmental milestones. But at the young age of nine months, he contracted the Roseola virus. High temperatures of 105 degrees took control of his body for three days. But at last, the fever broke and the virus seemingly left his small body.
It’s only with the hindsight of today that we now know the virus never left. It is alive within the walls of Taylor’s body and it has turned his world upside down. What did leave was the child we once knew. As first time parents, it wasn’t obvious right away. But it later became evident that our happy child, John Taylor Queenan, had disappeared from our world into the unknown world of Autism.
When Taylor reached 19 months of age we absolutely knew something was drastically different. It came in the form of a little girl at the door of our daycare provider. She answered the door and when I asked how old she was, she responded “one” and held up her finger to show me. I sunk with confusion. Taylor could not do that and he was nearly twice her age. I called and demanded an appointment with our pediatrician that same day. The typical questions were asked, but no definitive answers were given. While there was mention of several developmental delays, they were quickly dismissed as Taylor did not and still does not fit any particular mold. The little known word Autism came up – but was again dismissed. The doctor said he was too playful, social and happy to have Autism. Little did they know or understand what would be an epidemic of the future. This was 18 years ago and Autism was almost unknown.
I left the doctors office – with no answers and no reassurance – and stopped at our local bookstore to purchase every book I could on Autism. I read and wept; realizing that what the doctor may have not wanted to tell me was actually true. The description in the book was my child – our child, who had Autism. A mother instinctively knows and it did not take an official diagnosis to realize our new reality.
That day our dream changed. In subsequent years, my husband and I spent every day trying to reach our child and bring him back into our world. I remembered at the time saying our life had been so easy and everything just fell into place. But I also always knew that any cross I was to bear would involve our children – because that is where it would hurt the most. We desperately sought treatment – although the denial was so strong that we could have easily slipped and ignored the inevitable. I thank a higher power for convincing us to take action and giving us the strength to move forward – despite our refusal to accept that our son would somehow be different.
Applied Behavioral Analysis (ABA) treatment was initiated immediately. It saved Taylor from living in a world of silence. His language improved each and every day. And today, although not perfect, he mostly speaks in complete sentences and is even using normal teenager slang language. Language has become the least of our concerns. But there is not a treatment for Autism that exists that we haven’t tried. Thank God again for giving us the determination and means to improve his life beyond what once seemed an impossible mountain to climb. Taylor has exceeded the expectations of others and we never gave up hope or perseverance in believing he could.
Along with ABA, I also credit biomedical treatment that we started at the age of four. It was extremely hard to find the providers at that time and so I became “a doctor without the education.” Biomedical intervention helped to “cure” Taylor’s body. Today, this is the treatment of choice for many and is widely acknowledged and accepted.
Through the years we have had many challenges and I know we’ll have many more. We are not the typical family. In fact, you actually become immune to some of the things that can occur – because in Taylor’s world, they just make sense! He has a reason when he sets off fire alarms or wants to drive someone else’s tractor! He is a perfectionist who has the inability to cope when things go wrong. Good thing we can cope or we would really have problems. It is just another day and you realize what’s really important. You build tough skin so as to protect yourself.
Our younger sons, Chandler and Parker, have lived an atypical life as well. But they are better children and people because of Taylor and his Autism. They have learned coping skills beyond what most encounter in a lifetime. They are caring, understanding and patient because of their brother. Because of Taylor, I did not vaccinate either one of them and I tell them Taylor may very well have saved their lives. They are compassionate human beings. We are all the products of our environment. To that we are also thankful.
We have never said “why us?” but instead “we know why.” Things do not happen without reason and do not happen if you cannot handle it. Things do not happen without purpose and everything is intentional. You have to have the solace in knowing that your child is here to help you as much or more than you are to help him. We are a better family because of Taylor.
But today, it is not just the present that we are concerned with. It is his next chapter that leaves us lacking sleep at night. Who will care for him when we are gone? Where will he be welcomed and appreciated for his uniqueness and strengths, his abilities and passion for life? How can he live a productive and happy life complete with enjoyments that we all take for granted?
That’s why I felt it was so important to help create Sunflower Hill. My husband and I envision a life for our young adult and others that is better than what exists today for individuals with developmental disabilities.
Our children deserve the same life that comes easily for others. Sunflower Hill can be a community of “like individuals” who become a family. I envision a retirement-like lifestyle where they can work, socialize and live their lives to the fullest and the best of their abilities. After 18 years, I still have not succumbed to giving up and my husband and I still have goals of Taylor living an independent life. But if not, Sunflower Hill will be the next best thing.
by Angi Queenan