In the last year, we've been fired from our pediatrician's medical practice, had Child Services sent to our door, and entered a litigation battle with our son's school district. All because we choose to parent our children a little different from the norm. Maybe a lot different.
It all started with our oldest son, who has a severe brain malformation and pretty significant special needs. During his first year and a half, we were good little sheep and we followed along with what doctors and therapists recommended. Until we woke up to reality and realized that the path we were on would lead to the slaughterhouse. Not quite, not really, but it would lead somewhere ugly (surgeries, prescription medications that cause side effects that lead to more prescription medications that lead to more side effects that lead to more prescription medications etc). We hopped off the Western medical treadmill and decided to forge our own alternative path.
As a meditator, I felt that it was important to take a holistic approach to our son's care. Instead of forcing him to move his limbs, I felt we need to work WITH him, not against him. I found therapeutic approaches that were much gentler, more holistic. I Informed myself about everything, including vaccines, and decided against further vaccinations.
Our doctor wasn't pleased. We spent several years avoiding Western therapeutic approaches, and using practices such as craniosacral therapy, acupuncture, homeopathy, and Feldenkrais. We had Waldorf educators come to our home and teach us how to implement a gentle rhythm in his life. Even with all his medical problems, our son was well and, most importantly, very happy.
When he was three years old, I became pregnant with my daughter, and when she was six months old, I got pregnant again with my son. They are now almost seven, three, and almost two. I decided to stay on the same path with my typical children, and to focus on alternative and holistic healthcare.
But because of my son's very real, very medical needs, such as severe lung disease, a feeding tube, and a shunt, we've had to keep him in the care of a pediatrician. Said pediatrician wasn't very happy when we chose not to vaccinate the two little ones. And one day, after my son got a small burn on his leg from riding around with his dad on a quad, child services showed up at our door.
Our doctor had called child services and said we were neglectful parents. We hadn't vaccinated our kids. Our son was getting burns in his skin. Our children weren't followed regularly by their practice for well checks. Why do we need well checks for our typical children, when they are followed by a homeopath and we know they are healthy? We've been there and back when it comes to healthcare and development, we would KNOW if something was going on with our little ones. But that makes us neglectful parents. And not vaccinating is the ultimate sign of neglect. When we called the pediatrician's office, we were informed we were no longer welcome as patients.
Apparently, I didn't get the memo that making different choices for our children would result in persecution.
And while we dealt with this situation, with weekly visits from child services, our son’s school district decided to takes us on and we found ourselves in a legal battle. Although my son is severely disabled, he is actually very smart. He cannot control his body at all, has almost NO voluntary movement. Yet he understands language, cause and effect, and the world around him.
When he was just two years old, we gave him the opportunity to play with a computer that reads his retina, so he can control it with his eyes. He became an expert at controlling this device after only a few attempts. When we showed the school district, they claimed that it was purely accidental and unintentional. Even though we purchased and sent the device to school for them to use, they refused to use it because they simply didn't want to accommodate to him. Effectively, they silenced his voice, his only way of expressing himself and his needs.
In the midst of all our other struggles, we found ourselves in litigation with the school district. After presenting ample evidence of our son's cognitive skill, we won the case, and they had to agree to use the device. Except now, the school hates us.
Two months ago, when my son went to school with his nurse, we were told she wasn't allowed to be in the building with him any more. She was escorted to the principal's office, and off campus. Apparently the school has the right to restrict access to healthcare personnel. Even though my son is full care, with multiple devices in his body, he doesn't have the need for a one on one aide. Why? Because she makes them accountable for the use of the computer, and can tell us how often they are (or are NOT, as is the case), using the communication device.
So now we're back to litigation. Our son has missed two months of school. And we are the most hated parents at the school for simply fighting for our son.
But as a Buddhist, I refuse to stay mired in the muck. I choose to view all of these experiences as opportunities to grow and learn. To practice compassion. Offering my children an alternative, holistic approach to their life and health is something I will continue to do, even if I have to take on doctors and school districts. Deep in my heart I know this is what's best for them. And if in the journey I have to go from sheep to wolf, then HOWL.
Marcela De Vivo spends as much time as she can advocating for her children. With Richard Isaacs, her son’s special education lawyer, she tries to spread the world about advocating for children with special needs and educating parents about their special needs children’s right to a customized educational approach. Follow her on Facebook and Twitter to connect!
