Two years ago, on August 2, 2006, my world was forever changed.
It was on that day when my older son, Jacob, was officially diagnosed with autism. By the time we received the official diagnosis it was clear that he was on the spectrum, but the official diagnosis really made everything “real.”
Prior to that point we had enrolled Jacob in occupational and speech therapy classes (at our own expense) to help him learn to more effectively communicate.
He had minimal language, but was more prone to pointing to things he wanted. More commonly, he would take our hands and guide us to what he wanted.
Jacob’s diagnosis allowed us to receive a vast array of services — free of charge — through our Regional Center, a quasi-governmental agency that connects children with special needs with qualified providers. The main service we receive for Jacob is a one-on-one therapy called Applied Behavior Analysis (ABA). Jacob qualifies for 40 hours a week of services — which now are divided between his time in school and the ABA he receives at home.
After approximately a year with one vendor who we found to be highly disorganized and unprofessional, we were fortunate to change agencies. Jacob now receives his ABA therapy from the Center for Autism and Related Disorders (CARD) — a worldwide leader in the field founded by Dr. Doreen Granpeesheh. We have also explored alternative biomedical treatments and experimented with a gluten and casein-free diet.
Without question the past two years have been beyond hard — I could have never imagined our family would have been confronted with so many life changing and life threatening situations. In early 2006, as it was becoming increasingly clear that Jacob was dealing with something more significant than speech delay, his younger brother, Max, was born six weeks premature with a host of life-threatening challenges of his own.
For Max, basic survival was the main issue — he nearly died three times in as many months and I even gave him CPR — on my birthday of all days — after he stopped breathing, turned grey and went limp. We spent weeks in hospitals with him, NICUs, PICUs, Children’s Hospital, you name it. All the while we knew that Jacob needed more help than we were able to give him.
The experience drained us emotionally, financially and physically. Having one special needs child is one thing, having two really tests you. We sometimes refer to Jacob and Max as our “million dollar babies,” because the direct and indirect medical care they have both received in the past two years has easily totaled $1 million or more. Fortunately we had insurance, but unfortunately, our insurer was adept at finding all sorts of clever reasons why they were not liable for paying for various treatments.
However, despite the multitude of challenges we have faced in the past two years both Max and Jacob have made tremendous improvements. By most accounts they have both beaten the odds and continue to surpass expectations.
Although he still has a ways to go, Jacob is now very talkative and interactive. He is full of joy and has an impressive ability to play with words and exhibit creative thinking. Max is a gregarious fireball who has a lust for life that is inspirational — he is the kind of person who other people want to be near. I admire them both tremendously and know that they are my strength.
I now feel that I have my sons back and am finally able to experience something close to “normal,” whatever that really is! I can now imagine what it will be like in another two years and am excited and hopeful about the potential both boys have.