*Walks up to internet podium, hands clenched nervously and whole body covered in flop sweat*
*Taps ‘mic’ resulting in predictable/clichéd feedback*
Uh, so, hi. I’m Stephanie, and I’m an ASD parent.
World: “Hi, Stephanie.”
The visionary force behind Prairie Spectrum
Saying I’m an ASD parent just leaves so much out, though. Being a parent is massive in and of itself and just by saying I’m a parent will lead most people to start forming a picture of what I am in their mind. But an ASD parent? That is a whole other set of circumstances that will leave most confused, mystified, or even blank.
So who am I and what does it mean when I say I’m an ASD parent?
I am a 30-year-old mom with two children.
AJ (sometimes a.k.a. Rose) is my 18-going-on-impossible step-daughter who has ADHD and has intellectual and cognitive difficulties. She is currently enrolled in high school and set to graduate in 2018. AJ is very playful and a genuinely nice young lady, lightly peppered with moments of pure spunk and teenage sarcasm that leaves even her dad speechless at times (you wouldn’t know it, but that is saying something).
Daniel (a.k.a. Bandit) is my 3, almost 4, year old tornado. In April 2016, he was diagnosed as being on the Autism Spectrum Disorder (ASD) at the Children’s Development Clinic hosted by CDS (Children’s Disability Services). Daniel is mostly non-verbal. He baby-babbles still but has a small verbal vocabulary and uses limited sign language to communicate (along with screaming, hitting, pulling, pushing, poking, etc.). He loves to sing and his favourite movies are ‘Planes’ and ‘Planes: Fire & Rescue.’ He has more energy than I can fathom, with a laugh and smile that are contagious. In short, he’s a goofball who would be the perfect child if it weren’t for the fact that he’s a typical toddler with adult-sized tantrums and meltdowns (not to mention a stubborn streak taller than I am).
I am, more often than not, and as you can imagine, exhausted. I’m not sure if it’s the ‘can’t-tell-if-the-eyelid-twitch-is-from-too-much-caffeine’ or ‘too-little-rest’ exhaustion). I like to joke with people that I have too many jobs, only one of which pays the bills, and too many parts (part mom, part warrior, part stressed-to-the-max, part trying to cling to my younger, weirder, goofy self, etc.). I have great enthusiasm for baking (yum, carbs), swear too much, and am passionate about many things, mainly my family.
After I received Daniel’s diagnosis, I took to researching as much as I could about what ASD was and the services and resources available to my child and family. I wanted to know more about this new set of circumstances we found ourselves in and where we could possibly end up. I became overwhelmed by the number of ASD sites but was unimpressed by the lack of Westman specific materials. Don’t get me wrong; there is information out there! It just seems to be very well hidden or more specific to the city of Winnipeg.
Between the enormous waitlist for more intensive early intervention therapy, the seemingly non-existent (or at least very little spoken of) parent directed supports (and their lack of communication thereof), and the minimal movement being made to change the faults within the “system” (as observed by me), I began to lose hope and courage at the thought of the type of life Daniel would have and how my family and I could help provide a good life for him. My self-assuredness that I was doing okay as a parent took a good hit too.
World: “Awwww.”
Fret not, dear internet audience, that I let this despair keep me down or sway me from doing my all to make sure that Daniel would have all kinds of options available for his future. Between the mountains of paperwork, endless therapy sessions, and daily battles to get even the smallest crumb of a new type of food tasted, I, and my whole family, stepped up our game and have been giving our all to support its shortest member.
Through this chaos, I kept learning about what to expect, not only as a mom to a toddler, but as mom to an ASD toddler. I learned many new and interesting things. Like how non-verbal has absolutely nothing to do with quiet. How milestones and their expected timeframe are baloney. How when milestones are eventually met, it is even more exciting and craz-mazing than I believed it would be. And how I can never, ever let my pantry run out of KD or blueberries.
What I did not do, however, was remain satisfied with the aforementioned seemingly lack of local specific online and real world resources. Instead, I decided to make my own, so that no one would ever have to go through the same frustration I faced.
Thus, the concept of Prairie Spectrum was formed.
I figured that if I couldn’t get what I was looking for, then there must be other people who must share the same frustration. If there were others, then there was a need for something to be done. I resolved to put all of my research to good use and publish my findings online. I wanted to dig deeper by talking with those in charge of providing ASD-related services and getting more details about what was available and how the systems for providing those services work. I wanted to address the issues that I knew I, as a new ASD parent, had. I wanted to delve deeper into raising autism awareness, acceptance, and advocacy and supporting those with the same concerns. I wanted to talk about and share my struggles so that others would not feel alone.
That, in a nutshell, ladies and gentlemen, is who I am and what I am doing here.
World: *Cheers*