Disheartened

(FYI: I bold terms that relate to the world of Autism in support of awareness and education. In some instances, I will hyperlink these terms to literature that will provide you further information. Just trying to do my part for the Autism community.)

I live life by seeing the “glass half full” as much as possible. I have been faced with some pretty tough hardships, but have managed to survive them with a bit more strength each time. Nico’s Autism has been, by far, the toughest hardship of my life. I like to force myself into thinking that it’s actually my Mom’s tragic death (she died when I was 17) that is my ultimate hardship because I don’t want to believe that my precious son could ever be a hardship, but on days like today it’s difficult to convince myself otherwise. And today isn’t even the worst of days we have had with Nico, but it’s one that leaves me feeling disheartened.

See, Nico is still minimally verbal. He is definitely not nonverbal; he can communicate basic needs and can communicate with some 2-3 word sentences, but there is really no two-way communication with him. I’m not able to enjoy hearing him rattle off how his day was at school or how he feels when I am gone all week for work. Our conversations are very one-sided; I share with him and ask him questions and he takes it in without much response back. Instead, Nico mostly repeats back what I am saying. One hallmark behavior of Autism is echolalia and Nico is extremely echolalic.

We have worked so hard on helping him work through this behavior and respond appropriately to questions and conversations. Some days are better than others, but most days he walks around the house scripting books he has memorized by heart. Nico loves books…no, I mean he literally LOVES books. They are his toys. He has 100s of books and he spends his days listening to his books being read aloud on random YouTube Kids channels that he somehow finds on his own. It’s like listening to audiobooks, but instead of a professional who was hired to read that book for audio purposes, Nico finds aspiring internet TV actors who must do this in their down time between casting calls and their 3 part time jobs. Some of them are real characters, but they must have had great phonics and reading teachers because they pronounce well and are very engaging. That’s honestly all I care about (being a former English Language Arts teacher); my kiddo must always have great articulation and know his grammar rules….even if he may never fully communicate…sigh.

Just saying that makes me tear up. I want Nico to start talking so much more than he is. He has such an expanded vocabulary. I know because he is reciting book after book to himself and the words he is spewing out are not just run of the mill high frequency words that Kindergarteners his age are working with. He just isn’t using this vocabulary in appropriate ways yet. Instead, we have to stop him from scripting, have him look us in the eye so he knows we need his attention, and then ask him a question or communicate something to him. At that point, we pray that he registers what we said and responds appropriately. However, more often than not, Nico repeats what we say which then causes us to spiral down the rabbit hole of using our prompts like, “you can say…” or “look at me and listen…” over and over again until we get some semblance of a correct, registered response.

Today has been a day like that. Nico is just not responding appropriately and I feel like we are regressing instead of moving forward. I cannot fathom a world where my son cannot communicate with me. I want to have deep conversations with him, crack up laughing from his jokes, console him when he has a crappy day. I am wallowing a bit today, I know. I am currently looking at my glass as half empty, which is so out of character for me, but it is what it is. Autism is my greatest hardship. It’s uncertainty and lack of answers eats me alive. I go to bed thinking about it and wake up to it beating down my door.

When Nico was first diagnosed, I asked the pediatric neurologist point blank: “will he ever talk?” and he told me that he wasn’t sure. He said that research is showing that most children, if they do not start communicating by age 8, may never fully communicate at all. Their communication will be limited. I feel like Nico is a ticking countdown timer and age 8 is our expiration date even though I have spent endless hours researching and have heard countless stories of children with Autism learning to communicate later in life and going on to earn college degrees. I know in my heart Nico is meant to do great things in his life and that is what silences this dreaded timer in my head.

I will not; however, forget to recognize how damn lucky I am though. I know of other Autism families with children and adults who are much more severely impaired than Nico. I always have a strong level of perspective around this, but I am a realist. I allow myself to feel my feelings fully and deeply. This is how I am able to push forward each day. Life for us isn’t easy. I can’t “fix” any of it. I have to just stay the course and keep advocating with patience, love, and hope. What keeps my glass half full today though is the fact that my son is a literacy nut, just like his mama! His absolute love for words and language is infinite and so I know he is building the most incredible repertoire of vocabulary in that mystical brain of his everyday.

Which, to be honest, makes this whole post the most insanely ironic one ever to be read. Ha, how ’bout that?

3 thoughts on “Disheartened

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