If there's one key thing I've learned from our Autism journey, it's that community is integral. The popular saying, "it takes a village" is beyond accurate.
It's too easy to feel like you're on this journey alone - I know I've felt like that, probably about 95% of the time since Nate's diagnosis. I had people willing to rally behind me, and I was too stubborn to see it. I was too lost and caught up in my own head to let people know how they could help me.
That's the thing - we feel as parents that it's our job and our job alone to navigate this diagnosis. We put up the protective wall, thinking we are the only ones who will ever fully accept our kids for who they are. We get nervous around family, hoping a behaviour doesn't happen. We stop showing up to family gatherings, or social outings with friends. We have lists upon lists of excuses and reasons to explain our kid's to strangers. We have a set of places we can take our kids to because we know the exit routes and their favourite things. Anywhere new is a terrifying venture.
Honestly, what good does that do our kids? I know I dreaded taking Nate to the park because he couldn't handle transitions and there would be a screaming and hitting fit when we left. We spent most of our time staying home, or playing in the backyard, because I had no idea how to "handle" my child. I stopped seeing friends. I stopped seeing most family. I went to my mom's armed with EVERYTHING we could possibly need, because I never knew what comfort item or sensory toy Nate would need.
I quite honestly isolated myself.
I didn't even let myself rely on Nate's father (my partner at the time). I would drown in research, I would read studies and stories - both good and bad, and learn about recent therapies and medicines. I'd absorb so much information, I forgot I was a person, not a computer. I thought all my time with Nate had to be spent doing educational/therapeutic activities, and forgot that he was a kid who just wanted to play (no matter how differently his playing looked like).
Nate and I went through a rocky period. I was newly separated from his father, had moved myself and Nate into my mom's house, and was still navigating life through a possible ASD diagnosis. I didn't know what to do. I didn't know where to start, and I sure as hell didn't know how to ask for help.
I think all parents feel that way, whether you have a special needs child or not. You get told while you're pregnant that everything about being a parent is instinctual and "you'll know what to do." I guess I agree with that, when Nate was an infant. Feed him, change him, cuddle him, repeat. But where is the instinct I'm supposed to rely on when someone tells me my son is "different" and "less than perfect"?
It was months of Nate and I constantly screaming at each other, each behaviour driving me more and more insane. Neither of us understanding the other. Barely scraping by mentally. I am ashamed to admit it, but I'm sure I was the cause of my son's horrendous behaviours in those early days. I didn't have the patience or seemingly, the strength, to handle it. My mom would ask what she could do to help and I'd insist on doing it myself because it was just easier than explaining the DETAILED way she'd have to change him because of his preferences, or how you HAD to cut his food because he wouldn't eat it any other way. I would only leave the house and let her "watch" him when he was napping and knew I could run a quick errand, because he slept like clockwork for 1.5 hours.
It became so much, I took a mental health leave from my job. I spent 2 weeks simply trying to have fun with Nate, to settle our life at my moms, to explore and do things with him that were not geared towards ASD. Wouldn't you know it, a switch flipped.
I started finding joy. I started laughing with him. We started SHARING moments and memories - something professionals say is rare in ASD kids. We shared interests. I started letting my walls down, and let my mom carry some of the load.
When I met my fiance for the first time, it was in his backyard in Stratford and I had had to bring my son. We sat on the grass in the backyard and I prepared my speech of, "this is my son Nate, he is in the process of getting an ASD diagnosis, and he probably won't want anything to do to you." I was petting his dog, when I looked up, and Nate had sat right down in Nick's lap, with a big smile on his face. This kid rarely even snuggled me, or his grandma, but sat down in this "stranger's" lap. My heart filled with so much joy. I didn't feel the need to explain that Nate was "different," or anything of the sort.
After that day, my village expanded. Nick taught me to lower my walls, and to stand up for myself and my son. He taught me that I owe NO ONE an explanation for how my son behaves (unless he affects someone, then obviously we apologize). I met Nick's son, and I learned what it was like to have a neurotypical child. It was an effortless transition from two separated parents with kids, to a blended family who worked together to support each other.
I finally let my mom play a bigger role in Nate's life. After we had moved out, I'd call her with updates on how Nate was doing. I'd send photos to my siblings and my friends, sharing Nate's milestones. I was no longer "ashamed" that my almost-3-year-old couldn't use a spoon. Instead, I bragged about him learning to just HOLD a spoon.
I didn't realize how isolated and lonely I had been, until I became part of a community. When Nate's diagnosis came down officially in October 2021, I joined Autism parent groups on Facebook. They were great, but also overwhelming. ASD is not a one-size-fits-all. It's a spectrum for a reason, and I personally found it so hard to read about Level 1 kids who were living almost normal lives, just as I found it hard to read about Level 3 kids who were in the same or similar boat as myself and Nate. I would cry reading desperate posts from parents who poured their heart out in a post about simply wanting to hear their child's voice. I could relate to so many.
There are tons of communities out there, made for parents like us. Pages like mine, we aren't in competition. We don't sit at our computer and think of the best ways to get page views up. Hell, you've seen me miss a few days of posts because I've been spending time with family! Don't come to me for advice or knowledge on Facebook or Instagram algorithms, cause I'm in the dark there. I simply want a community.
I want to continue expanding my community. I want people to have a safe place to turn. I want people to be able to find a friend who is going through the same thing. I want a mom to read my posts and think, "I'm glad I'm not the only one who feels that way." I want grandparents to read my posts and think, "I wonder if my daughter is feeling this way." I want to START conversations. I want to EXPOSE our truths and hardships. I want us all to know we are never, ever alone in this journey - no matter where you are on this path.
Please, use the forum on this website. Please, write a comment on Facebook. Please, send me a message or an email. Please, share this blog with a friend who's struggling, or a friend you're not quite sure how to vocalize your feelings to. Use this as a resource to start conversations.
But mostly, please use this as a place to feel safe.
We are all a community. Trust me, we need it.
XO
The Spectrum Mom
Commentaires