The A Word

Preface

I started writing this post back in April. If you know me, you know I talk about everything going on in my life. From my kids eating their own shit to my mom bod. I wasn't born with the ability to keep quiet, therefore I tell all the stories. But, there's one story in particular I've been keeping to myself. I'm not sure why exactly. Shame, perhaps. Denial. Overwhelming feelings of failure could be to blame. Anger nudges me as I write these words, and I try to avoid that monster. I figured there would be a day I’d feel okay talking about it, so I started writing with that day in mind. That day still hasn't come, but at this point I feel like I can no longer “hide” what’s going on, because it’s becoming obvious. So, here we go...

Back in March, my husband took Sabin in to urgent care for a double ear infection.

The following night after the urgent care visit, my husband mentioned, casually, that the urgent care doctor voiced concerns about Sabin's behavior, and he wanted to put in a referral to have Sabin see a behavioral specialist. He even threw around the word autism.

Yes, my husband waited a whole 24 hours to tell me this. *insert hard eye roll here*

My first reaction was, "you're just telling me this now?!!!??!???". My second reaction was, "are you sure he said autism?!!??! He saw him all of two minutes!!!!"

I was angry. LIVID. I wanted to march up to that doctor and rip his badge off his shirt. If there's one thing that I loathe the most in this world, it's doctors handing out a diagnosis like dentists hand out toothbrushes. ESPECIALLY when the child is so young. Sabin was BARELY one at this point.

Jump forward a few weeks to Sabin’s first evaluation with the Kaiser “Autism Team”. I was completely uncomfortable with this appointment before we even arrived, and I slipped further into uncomfortable territory while sitting in the waiting room with ten other kids and their parents. It was, what I can only describe as, an autism cattle call. My stomach turned every time a child was called back to see “the team”. I knew the parents were experiencing a lot of the same emotions I was. I could see it in their eyes. I knew there was enough confusion and sadness in that room to fill a semi truck. I’ve had many difficult days in my life, but that day took the top spot.

Meeting with the team was just shy of torture. The appointment lasted five hours. Between seeing four different doctors, and waiting in between each, it was a nightmare. The biggest frustration was they expected Sabin to perform all these “age appropriate” tasks. It was 8 am. And after each doctor, he lost focus more and more. By the time we got to the head of the autism department, both of us had depleted our patience for the day. After talking with the doctor for an hour, she came to the conclusion that Sabin MAY be on the autism spectrum, because of “red flags” (non-verbal, hyper focus on certain things, no interaction, self-stimulatory behaviors) he displays, but because he’s so young, they can’t say for sure. So, I left with more questions than answers. I left feeling even more defeated than when I walked in. I left feeling like I was going to lose my shit.

Fast forward to our meeting/eval with Inland Regional Center. This is a not-for-profit public benefit corporation that helps individuals with developmental disabilities. They are amazing, by the way. They said Sabin is definitely delayed, and they voiced some of the same concerns as the Kaiser doctors. They approved him for in home services, which means, a trained professional comes to our home so many hours a week and works with Sabin to get him where he needs to be.

When we began treatment, Sabin didn't communicate at all. He never answered to his name, he hardly interacted with us, and didn’t interact at all with strangers. Since he’s been with IRC, we’ve seen a lot of progress. He’s still not talking, but he’s interacting more, and since I’ve been working tirelessly with him every day, he’s now using sign language. He’s becoming more aware of the little things. But we still have such a long way to go. We have endless doctor appointments, as they try to rule out everything else. Neurology, genetics, audiology, etc.

This year has been the hardest for me as a mother, as a human in general. I have to work every day to fix an issue, but I don’t really know what the issue is. I don’t know if this issue is fixable. It could be autism. It could be just a delay. It could be sensory processing disorder. This past year has felt like an endless road trip with my family. I’m driving a car with a broken windshield, at night, in a downpour. I can’t see what’s ahead. The road seems to never end. I’m scared. I’m frustrated. I’m tired.

I’m sure there’s hope ahead, but I can’t see it yet. We have more hard days than easy ones. I’m not sure how long I’ll be in this place of grieving, but I’ve been here for a while now, and I’d like to get away from this place.

I’ve had doctors and professionals tell me over and over all the things Sabin can’t do. And yet they tell me it will be okay. They explain why it will be okay. I know it will be eventually, but for now I feel like it won’t. I feel what I feel and no amount of explanation and understanding will make me feel different. Understanding doesn’t take away the sadness I feel when I see kids his age doing what kids his age should be doing. Understanding doesn’t take away the anger I feel when someone looks at him funny because he’s yelling. Understanding doesn't stop the fear of what’s to come. Understanding doesn’t stop the sick feeling in my stomach when I think of someone treating him differently because they don’t understand him.

Sabin turned two today. I made him a cake. I’m going to smash it in his face, just like I did to his brother on his second birthday, because he may not be a typical two year old, but we’re going to treat him like he is. We’re going to continue to celebrate his victories, and continue to love him and support his needs, whatever they may be.

My goal with this post isn’t to gain sympathy. I just hope to give those of you who know Sabin, some understanding.