Where to start today.
When you’re the mom of a kid with special needs you work in steps. Sections. Small plans. You can’t ever look too far ahead because then everything gets too chaotic, too fragmented, and just too hard to handle. So you work in compartments. In our case it started with Alexandr’s first set of therapy last year. It was a six month compartment, and we set goals. There are always goals, things you hope to reach and see. Little milestones. Small victories. You hope for the best and you try to tune out the children around you, parents too. Not because you’re trying to be mean. You have to, for me when I take in those around me, it’s too much of a reminder of how far we have to climb, and an ever painful truth that we may never get there.
It’s a constant face to the forefront that my beautiful little bear, may never meet the world’s standard of “normal”. I have mourned so much from pregnancy to now, that it has been hard to handle the roller coaster of emotion that comes along with this. When the time came for me to go into the hospital at 30 weeks for the first time, I thought maybe, just maybe, it would all be okay somehow and it was all just a dream. I’d get out and go back to “normal”. Normal. You hear that word so damn often and I hate that word. I wish I could throw it out. What is normal anyway?
I had no idea when I took this picture, alone in my hospital room, that a few short weeks later I would be sitting in an operating room holding the hand of a man named Darrell, my kindly anesthesiologist as he assured me it would all be okay. They were telling me my son wasn’t getting oxygen, and that something was wrong. Dr. Adams, the man who would deliver my son, told me not to worry if I didn’t hear him cry. He probably wouldn’t cry, as they delivered my spinal block and did their best to make sure I was numb prepping me for my c-section as Daniel waited outside.
A short while later Alexandr made his entry into this world and nothing about it has been “Normal” since then. I spent time recovering from my c-section brushing up on infant CPR and learning how to clear his airway in an emergency. Sadly I had to use that once. No one should ever have to see their child turn blue on them. I have.
Alexandr has spent his life fighting but he is here and was released after just under a month in the hospital. When he was almost two years old and could only speak a handful of words, spent more time being entertained by the ceiling fan than his toys, and took no comfort in my embrace. I began to worry. Six months ago right around his second birthday Alexandr was officially pronounced to be delayed by about a year. We truly had an issue. I felt like I had failed him once again. As much as I struggled and felt like I failed standing in that hospital room, standing in my living room after his therapy team left, I felt even more so. That’s when I began to hate the word “normal”.
Alexandr now has glasses as well as Nystagmus which is an uncommon issue where his eyes bounce back and forth, which, he isn’t aware of and cannot control, but can be seen by anyone who looks at it from an outside perspective. Another difficult blow, another thing that cannot be fixed.
After six months of the knock down fight of therapy, Alex has seen good days and bad. We have seen progress but not forward motion. Recently we had a blow to our guts. His therapist came to me and finally said the words that I knew were likely coming but that every parent in my position is so afraid of.
She told me that we should have him screened for Autism Spectrum Disorder. They fully believe him to be on the mid to high functioning end, but ASD none the less.
Compartments, sections, little victories. We struggle every day and we spend our time looking at the smaller parts of our world because we cannot look outside, we cannot compare or big picture.
I took a step back from all of this.
I spent so long blaming myself for all of this and feeling like such a failure for not being able to give him everything, and allow him to have a life free of struggles. I felt as though I had to have done something, anything, to cause this. I know that I am wrong, and nothing I could have done would have made any of this better. I also know that “normal” does not matter. Alexandr is extraordinary.
Alexandr does things in a very special way. Alex sees the world in a way I will never ever see it. I am lucky to be around him. When I finally stopped trying to reach “normal” I found him. I found the beauty in my son just as he is. He shows me every day that he is there, in there, he may not show me in the way that everyone else’s son does, he does in his own way. Alex’s way. Alexandr is a superhero all his own. He hit a small breakthrough recently, and we have seen more progress, he has even found a unique way of communicating.
To other parents, I want to relate to you. I want to relate to parents who have children that carry on conversations with their three year old. My son does not even answer to his name yet. Please never misunderstand me, I cheer for your children, but I do not understand what that is like yet. I wanted to shout from the rooftops because my son who is almost three decided to use a fork for a few bites of his food.
My son still only knows about fifteen words, he often melts down at stores because of the noise, lights, and people, and my daily stories are not the easiest to tell. I spend my days, weeks, and months in small victories, baby steps, and compartments. Please don’t ever misunderstand us, we have to work in these ways to survive. Our time is filled with individual education plans, occupational therapy and speech therapy, and which toys should we buy for the engagement bin. How can we improve our sensory corner? Parenting for me is so very different.
I had a woman stop me during a time where Alex was completely overwhelmed by the grocery store, at the end of a very long trip, he was screeching at the checkout. She leaned over to me and told me I needed to learn to discipline my child.
Our world is different from yours, please please understand we are doing our best, and our world is just not the same as yours. I know at least for Alex, Zane and I, we do everything we can do get through this all together, the best we know how.
We try our best to find joy in our lives, we celebrate Alexandr for exactly who he is.
Besides, what is so great about “normal” anyway? This life is dizzy, it’s hard, and everyone, even people who have children that aren’t special needs may not have it easy, so we celebrate him. He is our superhero, and will always be.
We love you Alexandr, and no matter what, one compartment at a time, we will get through this.