Somewhere on the Spectrum. Written by Jenna Nelson
Somewhere on the Spectrum
I’ve heard horror stories about Parents getting their Autism diagnosis for their kids, but for us it was a different story.
Looking back, I can’t tell you exactly when my kids regressed. I wasn’t looking for it. I had Tyler two days before Justin turned one, so to say I was distracted was an understatement. I tried my hardest to juggle between the two, making sure to read with them a few times a day, floor time, taking walks and talking about everything (now we’re putting on your shoes). Trying to split my time between both of them. They both progressed with the “normal” time frames for milestones.
It wasn’t until later that I could look back and see that they both regressed somewhere between a year and a year and a half. They slowly started losing language, becoming more rigid in routine and preferences in movies, food, toys and places we went… If we went to the “wrong” grocery store they would have a full blown meltdown. I had NO CLUE what was going on! They had never done things like that before. I just assumed all of this was them going through a phase. I got reassurances and advice from EVERYONE.
“Don’t worry, he’ll talk when he has something to say." “Some kids are just like that.” “You need to make him eat what you eat or he’s always going to be a picky eater.” “He just needs more discipline.”
We couldn’t do anything. We couldn’t go anywhere. Justin became solitary… played and did things by himself. He was less affectionate. Lost eye contact. I’d have to make him give me kisses. It was the same with Tyler for the most part.
Tyler became more aggressive. He would (and still does) physically hurt himself, throw himself to the floor, throw his head back on whatever – concrete, tile… Honestly, I was scared he would REALLY hurt himself. I would try to calm him down. People told me to hug him really tight and he would wear himself out and stop. Nope. That just made him even angrier. Eventually I figured out to just get under him to keep him from hurting himself until he could calm down himself. I ended up getting hurt, but it was better than him getting a concussion or a broken arm. Or I would move everything that was around him so he couldn’t hit anything.
We had to “baby proof” the house again. They started destroying everything, screaming over everything… the only time they were ever really happy for an extended period of time, was when we were outside or in water. We took half an hour to an hour long walks 1-3 times a day, depending on how bad the day was.
Every night I cried myself to sleep. I just wanted to be a good Mom and a good Wife. Sure, I thought that I wanted to go to college and become a lawyer… or travel the world. But as soon as I had Justin, I realized my passion in life… I realized why I had always been so incredibly excited about working at the Pregnancy Support Center or the Daycare, why I loved hanging out with kids… I was being prepared to be a great mother! Yet, here I was. Bawling my eyes out into my pillow because I couldn’t teach my kids to talk. I couldn’t get them to color. I couldn’t get them to do anything they were supposed to. Other kids were learning letters, numbers and colors… and here I was trying to figure out ways to keep their diapers on so they wouldn’t smear their poo all over the walls.
“What’s wrong with me? Three years of working at a daycare with other peoples kids… and I can’t even teach my own. I’m a horrible mother. My kids would be better off without me. What’s the point in me even being here… being alive?” Depressed doesn’t begin to explain how I felt.
I grew resentful towards my husband. He got to leave the house. He got to get away from the stress and frustrations I had to deal with all day, every day. I would scream and yell at him, sometimes over absolutely nothing. Sometimes over everything. We got married very young, and I’ll admit, we really didn’t understand how to have a healthy relationship, let alone a healthy marriage. How to really communicate with each other. (We’re still working on it!). We almost got a divorce a few times. I despised him for working and leaving me to deal with the kids by myself. But I hated myself more. The one thing I’m supposed to do in life, is to take care of my kids… and I can’t do it.
That was a really dark year and a half to two years for our family. I struggled every single day.
Then, when I was still trying to make my kids do normal things, we were at a friends house for dinner. The kids were playing when my friend said to me, the boys acted and had similar mannerisms as a little boy she watched during the day. He had Autism. At the time, I couldn’t remember ever hearing about the word.
That night, after I FINALLY got the boys in bed around 11, I googled Red Flags for Autism. Clicked on the first link and started reading. One after another after another….. my heart started beating faster the more I read.
My kids are Autistic. There wasn’t a doubt in my mind. I started pulling up everything and anything I could find about Autism. I’ll be honest. A lot of it confused me. There were so many acronyms and long words. Aspergers is Autism? But this Autism is like that, and that Autism is like this and… My head was spinning.
But I did know one thing for sure by the time I was done reading many hours later… it wasn’t my fault my kids weren’t like other kids. I cried for a whole other reason that night. Not because my kids weren’t ever going to be “normal” or that they may never talk… but because I WASN’T a horrible Mother. I wasn’t doing everything wrong.
A few months later we got their diagnosis of Severe/Regressive Non-verbal Autism. Dr. Richard Dowel at the Children's Development Center has an amazing and reassuring way of explaining the complexity that goes on in their brain. I felt like I truly understood why my kids were the way they were. Dr. Dowell actually told me that I was one of the few parents he had met that had done such a great job figuring out our kids without even knowing what was wrong with them… that he was impressed with me and how well I handled our situation and how I responded to the kids while we were in his office.
I had a huge smile on my face as we were leaving, as I was being drug around by two crazy kids. I made it into the truck before I started bawling. Not only wasn’t it my fault, I was actually doing exactly what my kids needed at that time. I was being a good Mother.