A huge thank you to Lis for writing this and sharing her perspective with us!
This blog post is going to be a little different, I’ve invited Lis, an actually autistic parent to guest blog this week, and I hope you enjoy her story!
Hi! I’m Lis! I’m a mother to my 2 boys who are autistic, and I’m autistic as well. Autism was something we learned about almost a year ago, and since then I’ve done quite a bit of research and self-discovery, and it’s become clear that everyone on the spectrum really are different in our advantages and disadvantages, and pinpointing a single straightforward methodical approach wasn’t realistic because of the way our differences vary. So I had to drop everything television and family members taught me about being a good mother in order to give my son’s Spencer (3) and Jayce (1) a good system and someone they can trust, and doing so meant I had to adjust to their lead instead of expecting them to only follow mine.
Before I had my kids, I would worry about the uncertainty of becoming a mother to a tiny little life. I wouldn’t be able to focus on my own issues and not having the freedom to let myself fall apart and take a nap when things became too much to handle. But as soon as I saw Spencer, my perspective changed. I was no longer the angry resentful person I was before. I want to be clear here; this doesn’t mean everyone will have the same experience with being a parent. But my children saved my life.
Even though my perspective on being a mother changed, I still wasn’t able to comfort my son during his first few days of life. He didn’t want to be held or caressed or comforted in the ways you’d assume most infants would. Touching seemed to send him into shock, but I wasn’t aware he was experiencing a sensory overload at the time. I just knew he didn’t like it, and I thought I wasn’t holding him good enough, or maybe my chest wasn’t comfortable enough for him. I plagued myself with questions, wanting to understand what I was doing wrong. Keep in mind, I had no idea we were autistic at the time.
We experimented with different soothing techniques and decided to get him a rocker that was low to the ground. I’d then put on a video of slow, colorful blobs for him to watch. Sometimes that can soothe me, and I thought maybe he’d like it too. He LOVED it. Now I had a better understanding of him. He was a mini-me! When he seemed stressed, I’d look around the room and think to myself, “What could be bothering him? Is it bothering me too? I do remember feeling stress a few minutes ago, even before he started crying… OH! THE LIGHT! Maybe if I turn the light off.” And it worked.
Whenever I took a little extra time to focus on my surroundings, I found a solution. I had succeeded in connecting with my son in a different way, and I wanted to know WHY we were so alike. A few months after his first birthday, Spencer was still not addressing me or his dad, but I thought it was too early to put the pressure of language on him. As his second birthday comes around, everything was the same. He still wasn’t trying to get our attention with “mama” or “dada” or “look” or any kind of word or sound. He was always preoccupied in his own thoughts, and I empathized with that.
He liked observing other kids when they played, yet hesitant to play with them. Early intervention was suggested by a family member and we looked into it. When his hour-long sessions began at our home, his behavior shifted. He didn’t like being forced to carry out the same repetitive tasks they asked of him on a daily basis. for him it was an anticipated anxiety from the moment they walked into our home. I could feel his emotions by observing his behavior, he knew what was going to be expected of him, and he didn’t like any of it. His lack of cooperation resulted in a bad experience for him, and that’s not something we as autistics can just forget. We’ll play the scenario out over and over in our minds, and we’ll be against doing it again because of the extent of how much we experience feels traumatic. So the more he was asked to follow along and do as he was told, the more he resisted. I had to constantly insist breaks when he grew impatient. “You HAVE to be the mean strict mom,” his teacher said to me. I disagreed, but I figured if they have professionals who have been doing this for over 25 years, they must know what they’re doing. Right? I was only a first-time mother at this point. But mean mom never worked. Spencer stressed when I tried to enforce even the smallest of rules, and it took away his motivation to want to do good. Early Intervention suspected he may be autistic because of his speech delay, sensory needs, and hyperactivity. I had no idea what Autism was at the time.
7 months later, Spencer gets his Autism diagnosis + ADHD. The moment I walked out of the Developmental Pediatricians office, my mind began to race. All the differences they pointed out about him were things I could relate to or something I already went through and learned how to overcome over the years. I could understand not wanting to make contact, not wanting to be touched, always in a world of my own. Feeling uncomfortable and like everything around me was *too much.* I wanted to know right then and there… Am I autistic too? Is this the reason why I’ve always felt like a “freak?” Was my entire life simply a misunderstanding? What does this even mean for us? Should I get a diagnosis? Will they try to take my sons away from me?
It took me a few months to process all of my new found information, but once I was comfortable enough coming to terms with who I am and what makes me different, I put all my efforts towards trying to better understand autism, for myself and my children. I had a few realizations along the way. One of the bigger ones being, my son’s require a little solitude throughout the day. They need time to reflect on the events that have taken place, and how they felt about them. We ALL need time to reflect and relax. But breaks don’t work well for Spencer and Jayce without incorporating fun activities that would require them to decompress. So at home, we switch between an hour of high packed energy games (this works for my kids, but someone else may need to adjust accordingly, everyone has different interests and routine preferences) then we have 40 minutes of downtime. Jayce goes into his bedroom and he likes to lay back with his blanket to study his cars up close, and Spencer loves watching educational videos to relax. I have this all set as a daily routine, but I make sure that within that routine, something changes. The times are the same, but the activities change. They must always change for the routine to stay effective, as they get bored easily and like not knowing what to expect.
If I give Spencer something he loves too often, it’ll lose its importance to him, which means he’ll be less motivated. My youngest son Jayce is a little different, as he enjoys knowing what to expect, even as a 1-year-old this personality trait is already defined. It truly depends on our style and personality. So for example, they use the therapy swing 3 days out of the week, unless it’s requested more often than that. Same goes with the see-saw, the trampoline, playdough, kinetic sand, puzzles, video games… the list goes on. They tell me what their needs through body language.
Finding a morning school routine that suited us was a challenge like it is for most parents, this is nothing out of the ordinary. But after a little trial and error, we found something that worked. Getting dressed goes like so: We assist in putting one piece of clothing on every 10 – 20 minutes, depending on how they feel that morning. Sometimes they’re comfortable enough in the moment to let me put on more than one. And when I put their clothes on, I join them in their moment first, so that they don’t feel all of my actions don’t feel only about what I need from them. I’m joining their perspective as well, and that makes them feel valued, and so they’re happy to cooperate.
I try my best to avoid using the word “no” with them, but I do use it during dangerous moments where they may possibly harm themselves or someone else, but every family is different, has their own set of rules and if the word no works for you, that’s okay too! My sons also enjoy when I hum to them with good vibes while rocking back and forth. The gravitational pull of the motion of coming back up is something they find comforting, and the humming helps me to express the love I have for them both. It really boosts their mood. It’s just about experimenting and learning from all of the experiences until you find what works for them and what they enjoy.
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