Reasons, Seasons and Forever

And just like that…my written word is back.

The last several months since the holiday season have been pretty trying. I had been wondering for quite some time, even before the holidays came, why I was struggling to get my thoughts out let alone on paper. Writing had always come natural to me; yet, here I was unable to get my thoughts out and even my words out at some moments. For the first time in my whole entire life I could truly understand what Nico probably goes through daily, and let me tell you…no wonder my child is exhausted and can become emotional at the drop of pin.

However, after weeks and weeks of physical, mental, emotional, and psychological struggle, I was finally diagnosed as a COVID long hauler. I knew there had to be a reason why I was not myself and seeming to slip further and further away from myself. When I caught myself losing patience with Nico and feeling like his autism was too unbearable to manage. I knew something wasn’t right.

I had someone tell me again the other day that there must be a reason why I’ve had to deal with all these challenges and continue to face stressful times, so it made me stop and think about things. Is there truly a reason? Or is this just a season in my life?

It has been a slow recovery to get up and running again, and with a high-octane toddler demanding every ounce of my attention as soon as he sees me, I feel like I’ve been neglecting Nico; that is not something that I have ever allowed myself to do. I feel old and tired and my energy is slacking when it comes to advocating for Nico. I would’ve never dreamed that my neurotypical son would be more of an energy suck than my child with autism, but he has thrown me for a loop. My Max is wicked smart and funny, but he’s certainly not for the faint of heart, that’s for sure. He is a typical two year old with an independent mindset, and that makes it’s difficult to manage him when he thinks he can do it all on his (toddler) own.

And so I began to think back to what I have always consider one of my mantras in life, which funny enough, Hoda Kotb also referenced recently on the Today Show, that there is a reason or a season for everything that happens in life, while other things could or will be forever.

Reflecting on my current life sitch in this way is helping me compartmentalize my emotions and is giving me the much needed perspective that is necessary to let go of things I may have been holding onto for far too long.

Like, I know the reason for my brain fog is due to COVID. However, my thoughts are gelling again and I can literally get my words out without stumbling. That was god awful. Nico is getting past his episodes of rage that we were experiencing with him over the last several months and I am now convinced that the reason for his drastic change in behavior was because he was vibing off of me.

Nico and I have always seemed to be acutely in tune with each other, ET-style as I like to call it, and for those past months that I was struggling with the long haul effects of COVID, Nico felt there was something different about me. He knew I wasn’t myself. I was severely depressed, always in pain, irritable, tired, and just not the mom he come to know me to be, so he was reacting to this change in my behavior the only way he knew how.

It didn’t help that my husband and I had begun to struggle. He was unsure of how to help me and that frustrated him. He didn’t know how to manage Nico’s regressive behaviors and his rambunctious two year old at the same time; that would’ve been a huge ask for anyone. And he was battling with how to take control of our household reigns when he knew so much of it was what I managed (just like I would’ve been paralyzed if the tables were turned and he was sick…he maintains our whole home exterior and all upkeep), and now I was sick and tired and couldn’t even remember what he told me 20 minutes prior. Our home had suddenly become a place of stress and duress, so naturally, Nico’s meltdowns, physical aggression, and lack of language came flooding back and, boy, was it a rough end of the year.

But, all that to say…there were reasons for why we had those severe struggles last fall and winter and we have since broke free of that tumultuous time. And, like clockwork, Nico has readjusted and is back to being the Nico we have come to know, love and understand.

Which makes me think about how hopefully Nico will get to a place in his life where I won’t have to worry constantly or hold my breath waiting to hear if he’s had a good day or not. He’ll have gained enough coping mechanisms and exposure to real world situations that he will be able to live more independently. And I can look back on these early years as just a season in Nico’s life. A time, place, and space where Nico’s life was challenging, but it didn’t end up completely defining him. Now, this doesn’t mean that I believe his autism is merely a season in his life, but my hope for my sweet boy is that the struggles he faces now won’t be the ones he faces down the road.

Because when I think of the seasons in my life and how they have played a role in where I am today and who I am today, it just has always made sense to consider these experiences “seasonal.” They came, made an impact in some way and then faded off into the sunset. I remember Hoda describing her relationship and subsequent breakup with her fiancé, Joel as a season in her life and I couldn’t have empathized with her more. I equate a lot of my seasonal circumstances to relationships.

I’ve had great friendships that have carried me through some really difficult times on this Autism journey and I was so thankful to have them. Like when I first moved to Texas and met my first group of Autism moms. All of our kids went to the same therapy center. We bonded over our kids’ trials and triumphs. They were the first non-family guests that were ever invited to Nico’s birthday party and that was HUGE for me. But, as the years have passed, we’ve naturally gone our separate ways; however, I will always have my arms and my door open to them if we shall reconnect. If we don’t that’s ok too because those friendships impacted my life in the most indelible way.

Some friendships aren’t meant to last forever. I’ve learned to be ok with that and I need to teach Nico to be ok with that too. Nico has some really sweet friends in his classroom this year who keep an eye out for him, make sure he isn’t struggling, help him when he needs it, and just think he’s a cool kid (which he really is). But, it’s inevitable that with time and age, some kids may not be able to stay friends with Nico. It just may not be something they are capable of doing, but it won’t mean that those friendships are now in vain. Not at all. That’s because Nico went to school happy due largely in part to those kids being his friends. And what I love about seasons is that I am constantly learning from every seasonal circumstance.

In the end though, there are things that I know will be with me for the foreseeable future and probably then some. I know I will forever worry to my core about Nico more than I think I will worry about anything else. And unless I know he is able to live an independent life or at least have someone by his side loving him, partnering with him, and supporting him, I will probably spend the rest of my days willing myself to live forever. I know parents worry about their children forever, special needs or not; there is just another layer of concern that automatically comes when your child cannot advocate for himself.

I have people tell me constantly that “all parents worry about their kids forever…that’s normal” and my forever thought—not response—but thought always is…yes, but the degree in what we worry about is vastly different. You can’t always explain what it’s like to be a special needs parent, but I’ll tell you what…the people I deem forever friends and family are the ones that have seen me at my absolute lowest—in tears or enraged—and still choose to stay because they know sometimes I just get exhausted and overwhelmed trying to stay strong and hold it together. They are there for Nico, loving him, working to understand and relate to him, and having patience with the life that we live currently, which dictates that we stay in and open up our home instead. Believe me, my husband and I would love to go out; we know this isn’t our forever situation but for now it is and we’ve embraced it. My husband and I will always make great forever friends because we will be able to empathize if these situations arise in our friend circles.

Nico is going to have an autistic brain forever. I don’t try to figure out what caused it or nail down the reasons behind it. I don’t believe that it’s seasonal and with countless hours of therapy we can “cure” him out of it. I’m not looking for any of that. Autism isn’t something we’re afraid or ashamed of. What Nico does have that are seasonal are these God awful allergies! This is the only cure I’m looking for!

Nico’s autism does not define him; he defines what his autism looks and feels like. And as he gets older, I want him to understand that there are reasons for why he may not respond to, cope with, relate to and learn things the way others do, and that’s ok as long as HIS way of doing those things feels right to him. All I want for Nico is that he paves his own path in life, and he does it as independently as possible. That’s my ultimate goal and forever hope for him.

Autism does not define our children. Our children define what it is and what it isn’t. After all, the true kaleidoscopic power of Autism is that what you see at first glance is only a fraction of what it can be; the inner beauty of Autism is infinite and it captivates you the more time you spend within it’s polychromatic world.

Nico is my kaleidoscopic masterpiece. He shifts and changes before my eyes everyday and I am always in awe of his new reveal.

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