My heartfelt intention is that this particular story, my story (OK, my son, Matt’s story) gives you hope. It was written a few years ago for a presentation I made at a workshop for home educators. Enjoy!
The Journey Begins: The Crossroads, Part I
Public School, Private School, or Homeschool?
This story takes place in the early 2000’s and it is a story about a starfish, a boy, and a coward (or depending on how you look at it — a person with a lot of faith and hutzpah)!
This is the boy…
Matthew was born on July 6, 2001 A few days after he was home; we realized that not all was well with our beautiful new baby boy. It took weeks of searching for the best doctors to help us and thank God, the docs at Yale finally gave us some answers, although not always what we wanted to hear…
Matt was born with an anomaly, which required he have a rather invasive procedure performed by a surgeon every other day, then every 4 days, then once a week, etc. This went on until he was 6 months old.
He was also born with a severe and massive hemangioma. This required some laser surgeries by a pediatric dermatologist and at least 6 baths a day to keep the sites clean and free from infection.
In addition, he was born with a small sacral dimple. All of these medical anomalies were indicators that Matthew had tethered cord syndrome, also known as Spina Bifida Occulta. Thus, he needed spinal cord surgery at 13 months old to release the cord. As a result of Matt’s medical issues he developed a neurogenic bowel and bladder. Those were the medical pieces of his illness, as if that was not enough.
By the time he was 4 years old he had been labeled (inaccurately for many) with the following disorders:
- Asperger’s Syndrome
- Auditory Processing Disorder
- FG Syndrome
- Intellectual Disability
- PDD – NS (Pervasive Developmental Delay – Non-Specified)
- Sensory Integration Dysfunction
- Speech Delay
- Visual Processing Disorder
He was monitored by 10 medical doctors, 3 therapists and one educational consultant or neurodevelopmentalist at this time.
So now I had a quandary: What do I do about school the next year? I knew Matthew was brilliant. He was confident, curious, highly astute, and had a love for life despite his horrific beginnings. He had what educators would call “GRIT”!
Keep in mind I had been a public school teacher for 15+ years and I was deeply enmeshed in it. I loved teaching with every fiber of my being, no matter the grade level or subject matter content. I had taught Kindergarten through 5th grades as a classroom teacher and Reading Specialist; I was a district wide Reading Consultant, responsible for staff development training, as well as a former adjunct instructor in Reading for a state university. You get the point, public school education was my life, literally and figuratively!
Hence, this decision was beyond difficult for me.
To be continued…