I always wondered what it was going to be like when I had to explain death to Nico and if he would be able to connect to what I was telling him. Most often than not, Nico lives in his own world with his own thoughts and his own unique perspectives. I have learned to live parallel with him, but I never lose hope that he will reach out and pull me into his world so I can feel a bit more connected to him in an authentic way.
He knew something was wrong when he saw us crying and he knew it wasn’t ok when it came from both his mom and his dad. However, Nico did not show sympathy or concern in the way a neurotypical child might. Instead, he sat on the couch and started to script just a bit louder and more erratically at times. That’s how I knew he was aware there was a problem and it was not good.
Nico has always been in tune with his father’s and my emotions, especially mine. He can pick up on changes in tone of voice or nonverbal cues and will immediately start to overcompensate in his behaviors if he thinks it will help make a situation better. It never ceases to amaze me how Nico can be so aloof to so much when he is being practically spoon-fed the information; yet, be so in tune with things that are almost meant to be invisible.
This is the allure of Autism. I tell ya…
I knew I had to talk to him because my husband and I were pretty emotional and it was going to be a very long evening of constant calls with endless amounts of tears. So, I sat down next to him and I pulled up a picture of his “Abuelita” and I asked him who the woman was in the picture. Of course, I got no response. This is typical whenever I try to have a straightforward conversation with Nico.
I asked him again and this time he answered with an echolalic response (repeated my question verbatim), “Who is this?” so I knew this was not going to be an easy conversation. When Nico interacts with me in this manner it is not only disheartening, but also frustrating because it leads me to believe that he cannot comprehend anything I am saying to him. And it’s crazy for me to think this way because my kid is wicked smart, has a photographic memory, and can literally read anything you put in front of him!
So, how can he not answer a simple “who” question?
I felt myself starting to tear up and I knew I had to stay calm so I simply told him that the woman in the picture with him was his Abuelita and that’s when he repeated “Abuelita” to me. I acknowledged him and said “Yes! That’s her and she loved you very much.”
Nico knows what love is, but I try to show him how it looks and feels in all sorts of ways. So, I hugged him tight and said, “Abuelita loved hugging you and always wanted to give you a big hug when she saw you.”
He allowed the hug, but I knew he was missing the connection. All he did was turn back to his iPad and continue to zone in on the new book he discovered on YouTube this past weekend.
Man, this was tough. I wanted to shake him and just say, “Your Abuelita is gone and she loved you so much and we are all sad! You should be sad too! You need to know these things Nico so you can share in this grief with us!”
I felt so mad at that moment that Nico had Autism. I felt like his Autism was stealing away his ability to mourn with his father and me properly and all I wanted in that moment was for my son to feel grief and share in our grief. I wanted to just get up and walk away from him, but I knew that would not be fair to Nico.
Nico had the right to know his Great-Grandmother died. He had the right to know that when someone whom we love passes away it makes us very sad. And, I also wanted him to know that his Abuelita was now in Heaven with his Abuelito and he had one more angel looking over him. I pointed up to the ceiling and explained that she now lived above us and would always watch over us and keep us safe. He looked at me and then looked up at the ceiling and said “angel.”
He then looked me straight in my eyes, wiped my tears and said, “It’s ok. It’s ok.” And that was it.
He went back to his iPad and for the rest of the evening he lived parallel to us as we continued to grieve and process the news of our loved one’s passing. My husband and I didn’t press him for more of a response to the news nor did we change up anything about his evening routine.
Whether or not Nico has fully grasped the gravity of this family hardship or understands what it truly means to lose someone is left to be seen. I guess we will soon find out over these next few days and weeks.
But, I know that he is processing it in his own way.
It may not be the way I want him to experience it or process it which makes me feel a bit bitter, but I think that that’s just my rage against Autism presenting itself. All I know is that I want Nico to know and feel how much his Abuelita loved him because if he did, grief might not be such a foreign emotion for him.
I know Nico has deep compassion and empathy for others; I see glimpses of it every time he cups my face gently when sensing my anxiousness or when he brings me back to a place of hope with a short, but perfectly pronounced, “give me a hug.” I just hope that this journey we’re about to go on as a family opens him up to us a bit more because we are certainly going to need it, especially his father.
I’m going to give Nico the benefit of the doubt because I have seen him do tremendous things under challenging circumstances before. For Nico, it’s always been on his own time. Showing up for his family in their most dire time of need is something I know my sweet boy will most certainly do…we just may have to embrace that it will be in his own way. But, that’s what will make it infinitely more special and memorable for all of us.
Rest In Peace, Abuelita. We love you so much. Until we meet again….❤️