Welcome to Hell Land

By Mary Latini

The very first thought on every parent’s mind when their child is diagnosed with autism is that somehow we are going to defeat this. It does not matter what type of crap anyone feeds you, you are inclined to believe it. My (now x) husband with his degree in psychology and steady temperament was caught off guard with this. I was bewildered in a different way. I didn’t believe it was permanent.

Somehow, when you go to your first parent’s meeting at the school designed for children with autism and they tell you the inevitable “welcome to Holland” story, you get a sense that autism is not necessarily a bad thing, it’s just different. We believed that, because we had to!

We got Kevin Troy into one of the best schools in the country for autism. At the tender age of 2 years old, I had to put my baby who could not speak into a school He would have his own classroom and he would have a teacher using a technique called ABA (applied Behavioral Analysis) 6 hours per day five days per week. We were to continue his therapy at home with a special ed teacher. This had to work! After all there was so much support here. It was so upbeat. The motto of the school was “95% of our students will speak by 5 years old.” We had every reason to believe that Kevin would speak.

Months went by. Kevin was being trained like one would train a dog. It was repetition and reward. We attended a 3 hour class 2 nights a week for a year to learn how to use this ABA technique so Kevin would be successful 24/7. We had to additionally go into his classroom for 1 hour every two weeks to be trained one on one with the teacher. Nothing was left to chance! We did everything that was asked of us.

Despite extreme dedication, every medical intervention, nutritional, herbal, natural healers, immunologists, geneticists, neurologists, you name it; essentially the needle didn’t move. Our son did not speak.

At the parent classes the two of us sank lower and lower into our folding chairs as we heard other parents around us gleam over how their son was now speaking and they could not shut them up. Kevin had two signs “Me” and “More” and sometimes he even said “Me’. But that was only when he wanted a cup of juice.

Then something happened. After a year of hard work and dedication from an entire team of experts, Kevin accomplished his first goal. He was now three years old. He did not play a song, on the piano. He did not read his first word. But he did…Point. Yes, it took us a year of dedication and training to get Kevin to independently point at an object. In the world of Autism, this was a big deal! This could lead to being able to ask us for things. I can remember his teacher, Jenn, teaching us patiently. We had to unfurl his little pointer finger and hold it out for him. Then we would say the word “POINT.” This was repeated 10x every hour, hand over hand. On the 10th time he had to do it himself. If he could do it independently on the 10th time for a whole week, then he would progress to doing it 2x independent and 8x with our help. This, along with other goals like “wave hello”. and say “ME” were his goals.

It took time, but slowly we began to realize that whatever ability Kevin had we had to accept… and like a tulip, both those abilities were unique and delicate. We had to maintain everything vigorously or it would be lost. It was up to us. Our job was to love him and to accept him for who he was and to be patient, infinitely patient with his progress. Even though “Holland” seemed like “Hell Land” at times, we had to remind ourselves to look at the beauty and be grateful for each small win. We had to look at the bed of tulips and not expect to pick a rose, because there were none to be found.

Published by Mary Annine

I’m the mother of 2 boys; now both teens. One severely autistic, nonverbal with severe epilepsy, and the other an extraordinarily boy who is clairvoyant, a gifted musician and a passionate aviator. I am a lifelong piano teacher and blessed to have a career doing what I love. This blog is about the amazing lessons my boys have given me through our journey together.

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