Grieving the autism diagnosis: a personal story
Will was attending a small all-Spanish Montessori school for a few months when he was about two and half years old. Everything seemed to be going well until we started to receive reports that he was having tantrums and serious issues with communication. We thought it had something to do with him learning two languages at the same time. My husband spoke English to him and I spoke Spanish. He could definitely understand us, but it took repetitiveness to “reach” him. We had to make sure he was looking at us in the face, but since that was hard for him, he would look away. We started noticing that we could get and keep his attention by using whatever object he was playing with at the moment. The objects tended to be small, like little cars or blocks, something he could keep in his hand. I would bring the block from his hand to my face and then he would “see” me and I could tell him what I needed him to do. Simple commands like “come here” or “sit down” required hand signals to help him understand what we wanted from him. So, most language communication seemed to go only one way. He mostly pointed and made noises to convey meaning, like a whiny “I want that” kind of sound while pointing at one of his most preferred items meant he wanted it. That’s how we understood Will and since we had gotten used to this way of communication, we didn’t think anything was wrong with him.
He also had some interesting abilities. I remember walking into our little game room and seeing a tower of thin wood blocks, the type that are hard to stack even for adults, perfectly stacked to a height close to his. Apparently this type of dexterity is not a common thing in two year olds, so I took it as something amazing about him. To me, he was a smart, independent, sweet, loving boy with some quirks. We didn’t know what to compare him to or that we needed to be comparing him to others to confirm he was developing correctly. He was our first-born so we had no clue as to the right behavior of a two or three year old. The pediatrician gave us some developmental milestones, but since we had not previous experience we truly didn't know what to look for and we were not worried about it. We were happy and we were oblivious.
Then they called us from the Montessori school because Will had had such a meltdown that they couldn’t calm him down for 20 minutes. They suggested that we had him tested for a speech delay with the local ISD. I don’t know if you have ever been through a child with autism’s tantrum, but they are very hard on the nervous system of the caretaker. The screams are as if something is horribly wrong, but they can’t tell you what it is because they are completely hijacked by their emotions and they don’t have a way to communicate. It is so intense that the caretaker truly feels the situation is completely out of their control. It is scary.
We started the testing in January and it took four visits and a full month to get the results. Every time we came in to do one test, they would say “Well, we’re not getting conclusive results, so let’s schedule for another set of tests next week.” It was definitely very stressful not knowing. When we finally got to the fourth meeting with the School Psychologist, Speech Therapists, and Diagnostician, I was ready to know what was going on with Will.
“Will has Autism.”
There was a pregnant pause, and since I didn’t know what Autism really was, I was relieved to finally have something to work with. “Ok. What is it that we need to do to help him?” This took them by surprise (in retrospect, my own response took me by surprise), but they were happy to tell me everything I needed to know. It was overwhelming to receive that much information in the course of one meeting, but I had an answer.
What saved me, and continues to save me, is my daily practice and my toolbox. I have the ability to work with stress in a constructive way and I have support. Right around the time of Will’s diagnosis, I had decided to start a yoga certification for myself. I loved yoga and what it did for my mental and physical state, and what it later did for my spiritual evolution, was nothing short of a miracle. I’m Puerto Rican and if there is one thing we are known for is our passion, temper and fun-loving bombastic ways. Unfortunately, raising kids by yelling and throwing chancletas (flip-flops) at them was out of the question for us. I had to completely overhaul the way I thought I would raise a child. Through my yoga practice and the wonderful people that helped me understand children differently, the difficulties I was having with Will and disciplining him became easier.
My favorite story is when I was telling an older friend about my issues with him and what she told me froze me in my tracks, “Just love him, Nicole”. When I came home that night, I fell to my knees and I apologized to him for all the times I had yelled at him or put him in time out without understanding him. As I cried, I said I was sorry and that I loved him. I could see that he understood what I was saying at a deeper level, and we understood each other much better from then on.
Then came my “aha” moment that would come to form my way of seeing him, and later on, all human beings. My whole paradigm on life shifted when this realization hit me. I’ve told this story many times but it never ceases to amaze me:
When I first truly realized the need to be oneself as one is born into this world, was the day I was watching a movie with Will. We were watching Kung Fu Panda from Dreamworks, now one of my favorite movies and trilogy of all time, and Will was doing what he did, run around the couch in circles while “eeeeeing”. He had just been diagnosed with Autism and had just turned three. I was grappling with the diagnosis, not knowing what to expect from the future and not really understanding what it all meant. So, I felt lost and I was grieving the fact that I would not have a “normal” child like everyone else.
· That I may not be a grandmother,
· that he may not go to college and
· that he may need us to parent him for the rest of our lives
What kind of marriage and family would we be? I had just had my second boy, Stevie, and Will’s stemming had become more acute. We were all becoming more aware of his symptoms, which added to my worry about his and our futures.
So, while I watched the movie with him, already used to him running in circles, but now with the burden of “what to do with this situation”, the perfect message came to me through Master Oogway and Master Shifu, two of the main characters in the movie. Master Shifu had been tasked with training the Dragon Warrior, the one that would save everyone from the wrath of the evil one, Tai-Lung. The problem for Master Shifu was that the Dragon Warrior, according to the Universe communicating through Master Oogway, was a panda that had never even been trained in kung fu but loved it with all his being.
Here is a paraphrased version of the scene:
Master Shifu comes running to tell Master Oogway that he has terrible news.
Master Oogway responds, “There are no such things as good news or bad news. There are just news”.
Master Shifu tells him that Tai-Lung had escaped from prison and was on his way to them.
Master Oogway responds, “That is bad news… if you don’t believe the Dragon Warrior can stop him”.
Master Shifu replies “The panda?!”. Master Oogway says, “Yes, the panda will not fulfill his destiny, neither you yours, if you don’t believe he is the Dragon Warrior.”
Master Shifu says in frustration “That was an accident!” (you need to see the movie to understand why he says it was an accident) and Master Oogway calmly replies “There are no accidents”. Shifu says “Yes, you said that twice before”, and Oogway replies “That was no accident either”, Shifu replies “Thrice”.
Master Oogway finally explains what he wants Shifu to understand, “You need to let go of the illusion of control. Look at this tree, I cannot make it blossom when I want it to or bear fruit before its time”.
Master Shifu replies, “Yes, but you can make the fruit fall (and kicks the tree and many peaches fall, except one more falls on his head a few seconds after the fact when he didn’t necessarily want the fruit to fall). And I can plant the seed wherever I want!”
Master Oogway, like a father would say to a child, “Yes, and you may want an apple or an orange, but you will still get a peach”. And Master Shifu replies, and I identified so much with him, “But a peach cannot defeat Tai-Lung!” Master Oogway delivers the life-changing punchline, “Maybe it can. If you guide it, if you nurture it, if you believe in it.”
That’s the moment when I looked at my sweet little boy, running around the couch, “eeeeeing” away, that I realized he was my peach. I realized that my job as a mother was to believe in him and make him the best peach in the world. The best Will will could be.
The one thing I’ve learned from grief is that suffering can be a tool. After you allow yourself the mandatory period of grieving, you let the guilt and shame go, and don’t ask why this happened. Then you have a choice topick up the pieces, breathe and start anew. Ask for help when you need it and keep going and loving. I promise you things WILL get easier.