My daughter was diagnosed with Autism in May 2021 at age two-and-a-half. I also have a neurotypical son who’s eight years older. The period leading up to my daughter’s diagnosis was relatively brief, all things considered, but certainly intense and, as many of you in this community will be familiar with, involved a lot of paperwork, meetings with specialists, and waitlisting. We were blessed to be able to afford a private assessment, in the end, to speed things up. I know that is not possible for a lot of people. The phrase, “you have to spend money to make money” seems applicable here, but if you don’t have that money in the first place, what do you do? It’s a broken chicken and egg system.
Things I have learned the hard way this past year …
A “full-time” one-on-one support person at daycare is funded for only 15 hours. How is this considered “full-time?” Forget working full time, but do get on the waitlist for this one-on-one funding as soon as you can.
That, while I am grateful for any hours our daycare gives us beyond those 15, it’s still okay for me to be mad at the government for considering this enough and leaving families like mine with kids with extra needs hanging.
That you can be on the respite funding waitlist with MCFD for a really, really long time, like years. Seriously, how badly do I have to be drowning to access this? If I can still ask this question, maybe I am not drowning enough.
That “settled” is only a relative term. I’m now thinking ahead to Individual Education Plans (IEPs) and my eyes already straining from the future paperwork. Again, how does anyone with a kid on the Spectrum have a day job?.
I still feel like I’m falling down the rabbit hole of Autism, just over a year later. Like we’ve circled the tip of the iceberg and we have no idea how much lies beneath the water. But, now I know I can access information on all my iceberg-related questions through the community at AutismBC. It’s like they are handing me the whole scuba gear, including oxygen tank, and instructing me on how to use it.
My Meets. My Gift.
When I joined the AutismBC Meets Caregiver Evenings support group, I was in a burnout phase. Between going pedal-to-the-metal in getting my daughter’s therapies underway, still working a part-time day job, the on-going pandemic, and everything else I had going on in my life, I was struggling to cope. I was acutely aware of a gap in my support network. I needed a community of other parents and caregivers, who would really get where I was coming from. While the therapists who work with families like ours have high levels of empathy, and I am very grateful for them, they don’t understand the way fellow parents of children with autism do. Same with our friends with neurotypical kids. I needed a community with lived experience like mine.
The Meets are a safe space. We can take turns talking — or we can just listen if we don’t feel like talking — on a variety of topics, without judgement. Common themes that come up are parenting challenges we have had since the last Meets, advocacy issues we’re facing, upcoming developmental milestones around things like school that we’re worried about, interactions with those outside of the autism community which might be positive or negative, and our exhaustion at having these extra challenges to face. We can ask each other for advice, share resources, and talk about the great things that our children and grandchildren are also doing, because autism does also come with a lot of strengths. It’s a gift.
I have had so much great advice from the Meets and I’m looking forward to even more. I like how Lisa Watson describes parenting children with autism as an experience rather than a journey. I can see it both ways, but “experience” makes sense in that it’s not a cycle with an end. It’s an ongoing, beautiful, part of who our children are. I like that some of the parents have kids older than mine so I can hear about what joy and challenges I may have to look forward to in the future and learn from their experiences. Some of the great advice I have had is to start looking into what an IEP is well in advance, don’t worry about trying to make your family mealtimes look like those from a neurotypical family’s, try to take breaks when you can, and in a follow up email after one of the Meets, I got the very good advice that my daughter will tell me what she needs. It’s okay to let go of expectations. It’s okay to relax into this.
My Meets. My Lifeline.
Having this adventure of diagnosis happen during the pandemic, I have tried to look on the bright side… lots of resources and help offered by distance over Zoom, the school moms at my son’s school I didn’t have to mask my emotions for as I was coming to terms with this gift to our family… but it’s hard to keep looking at the bright side when my daughter and I catch virus after virus (mostly from her daycare, but the social skills she’s learning are so good!) and have to move appointments, cancel plans, as I try to still maintain a part-time job to help support my family financially. And that’s the other thing, working part-time, while managing my daughter’s therapies, while making time for my other child, my marriage, my self? It’s impossible. I am burnt out, parts of some days barely treading water, and I suspect a lot of other parents in the Autism community feel the same way right now.
So how do I get through this? The twice a month Monday evening Meets with AutismBC helps A LOT! As do the twice-a-month sessions with my counsellor. If you do not have a counsellor, I highly recommend getting one as soon as possible, put it on the top of your priority list. I also have a steady walking buddy who saves my bacon more than she knows and doesn’t judge when I complain about life, I offer her the same courtesy. Her kid is neurotypical, but she has years more experience than me in life, and that helps a lot for a sounding board. I also keep hidden chocolate in the house. Dark and salted; it works for me. Do whatever you need to do to take care of you.
When people donate to AutismBC Meets, they are giving other caregivers like myself the priceless opportunity of finding and being in a supportive community that benefits not just the caregivers, but the caregivers’ families. When you lift one person up, you are lifting everyone up. And that makes the world a better place.
Everyone needs a place to Meet.
Everyone needs a place where they feel safe to open up and share their challenges and triumphs.
A place to connect with a community of people who understand and can offer advice.
A place to listen, learn, and laugh. AutismBC Meets support group provides opportunities for people in the autism community to connect, empower, and learn from one another. We believe in the power of community to uplift each other through all of life’s ups and downs.
Help autistic people and their families find a safe, judgement-free environment to be themselves. Donate now at autismbc.ca/donate