Seeking Understanding

It's been two weeks since we received the official diagnosis. As lengthy as the process was, I expected that I would be more prepared to accept the news. I was wrong. I've learned, believing something to be true and then actually hearing it are completely different actualizations.

So what am I all torn up about? My son's behaviors didn't magically change the moment we received the diagnosis. The support he will need to develop also did not change, though I didn't realize how much support he will need.

I knew so little about the "A" word until last year. In fact, I have never actually met a child or adult I knew had autism. Yet ASD impacts 1 in 54 children...that's an astonishingly high statistic for never knowingly have met someone with autism.

Zayne passed all of the early screenings from his pediatrician without any concerns. He never had any issues speaking and seemed to develop well in most areas. I remember we use to pride ourselves on how "independent", "original" and "fearless" he was, joking that Zayne would probably be that kid always keeping us on our toes as a teenager. He would even greet guests at our Bed & Breakfast with a handshake, saying "Hi, I'm Zayne." He seemed to be advanced for his age, reciting from memory whole books and his ABCs around age 2. He could even recall sight words by age 3.

But then things began to start to look a little different. I don't exactly remember what made me pause and begin to think that something was off. Was it the blankets he would lay out on the floor from wall to door in the exact same order every night, with smoothed edges and a scream when anyone disturbed the order? Was it his lack of interest in any new movies other than "Finding Nemo"? Or how about the fact that there seemed to be no form of punishment we could use to change bad behaviors? Again, I don't remember but I know that things began adding up that something was abnormal.

Let's fast forward back to today: Why am I so torn up over something I have known in my heart to be true for over a year? It's because I am still searching for understanding. I am, by nature, a problem-solver. I don't like to dwell on things I can't change and lord knows I can't change what has happened. But there are still so many unknowns for the future.

It is so fitting that the symbol for Autism is a puzzle piece because this journey so far has been like trying to fit together a puzzle. ASD looks different for everyone. Some don't talk or are lower functioning. Some end up highly intelligent or savants to some extent. Some don't like changes in routine or have various sensory concerns.

So where does Zayne fit in and how do I support him best? How do I know if his behavior is "normal" 5 year old behavior or if it is related to ASD? Most of all, how do I appropriately parent him with all of these unknowns?

Despite what some people think, he will not grow out of being autistic. He will be given therapies in an attempt to help him fit in to this world. No parent knows exactly what the adult version of their child will look like but they can usually guarantee that certain things will develop as that child gets older. For Zayne, those guarantees are filled with big question marks rights now.

I know this will sound incredibly crass but I have to be frank: for me, hearing all the support that Zayne will need and hearing the official diagnosis was the death of the aspirations I previously had for him. I didn't think this would impact me but I find myself grieving over that. It sounds selfish, maybe even dramatic but everyone processes things in a different manner and this is where I have been over the last two weeks.

Allow me to explain. Most every parent envisions certain moments they want to see with their child: moments of belonging and moments of comfort with others. We find this when we see our child sit along side other children during story time or while they play with others on the playground. They build relationships, they care about others. I never had aspirations of my child being popular but I certainly hoped that he would still develop key friendships because let's be real, we all need a support system and outside of our family, that system is made up of our friends.

At this moment, people are like objects to Zayne. He takes no interest in them. And because of this, I worry about him and whether/how this will develop in the future. I worry if he will develop a support system outside of us (his parents). Selfishly, I also mourn this as a parent thinking about all of the lost moments we won't have as a result of his condition.

There are a lot of unknowns right now and I'm trying to learn as much as I can to be the best parent I can be for him. I'll get over the selfish thoughts as I process more. I'll get over my grieving and help him overcome all that I can. For now, I am not seeking perfection but I would settle for more understanding right now.

Thank you for following me in this journey. I decided to begin writing this blog for Zayne to read as he gets older, to help grow more awareness of autism, and for anyone who is facing a similar type of situation/thoughts.