You’re probably thinking, “Yeah, yeah, yeah, everyone’s kids get older and all their parents get all weepy and wistful about it and crap.”
It is true. That definitely happens.
But this kid, this little hilarious, smarty pants, incredibly sweet boy:
Is the reason I’m in business today.
Is the reason I started my business (well, it was mostly his nursery and my super Type A tendencies and a lack of ANY woodland animal-motif things out on the market at that time).
Is the reason I channeled my frustration with a colicky baby into sewing Boppy Covers while on maternity leave.
Is the reason I STRUGGLED so much when returning to the corporate world, and feeling like I was swimming against the current while attached to an anchor I didn’t realize I should have accepted in the first place and taken the very hard and financially terrifying road of quitting my day job to run my business and stay home with him.
So I continued to struggle, even after I left the corporate world and worked for an independent retailer as a fabric Buyer, which was a DREAM job, but once I got pregnant with our second kiddo (aka BAM), I had to make a choice. The dream job, in order to do it the way I really wanted to, was to throw myself fully into it, just like I’d thrown myself into being a parent, just like I’d jumped in feet first into being an entrepreneur.
But that anchor was still there. I could still feel the pull of it; not weighing me down, but tethering me to the really important things in life.
At that time I finally saw the anchor for what it was, and instead of struggling with it, I pulled up anchor from Portland. I took it with me to Astoria, quit my full-time job, and picked up a remote part-time support gig for consistent pay. My studio, at the time being an off-site space, moved back home where I could work until the wee hours of the morning and still be there for cries in the night from nightmare-ridden children.
All of these things have been for a reason. I know, I know, I’m getting all woo-woo on you, but that anchor may have been something in my subconscious that was always there, trying to help me stay grounded to find my way home. I don’t know why I grappled with it for so long.
And no, that anchor was not for me to quit my job and business and be solely a stay-at-home mom. Rob can attest that he would best me at that job all day, erryday. He works full-time and he STILL kicks my ass at housework and meal prep. It didn’t take me long to realize I’m not wired to be a stay-at-home mom, and that’s ok. I salute those parents who rock being a stay-at-home parent, because it’s an incredibly tough and (mostly) thankless job. Not to mention unpaid. I mean, come on, all other countries except Sweden can get with the program on this one, am I right?!
But I’ve always felt drawn to flexible schedules, flexible workflows, and flexible parenting. Which may have been why I didn’t play so well with the rules of the corporate world.
And boy, have I needed to be flexible, especially with this kid.
I’ve had to completely change how I parent.
STORY TIME (sorry guys, this is long. This has been in me for a long time and I’ve never written about it so here goes):
About the time we moved to Astoria (summer of 2015), we noticed a change in his behavior. He was 3.5 years old. We chalked it up to the big things that happened so far that year- he got a new baby brother, we completely uprooted and moved two hours away from Portland, and we were in a minor car accident that could have ended tragically. It was a helluva year.
Then school struggles were worsening. One preschool was simply not a good fit (long story), and the other preschool?
That preschool helped push us in the right direction. They did SO much to try and keep him calm, to avoid any triggers, as random as they were. We worked together to mitigate these meltdowns, and I received many a call to come help when they needed me. I’m still so amazed and thankful they tried so many intervention methods to try and keep him there and keep him happy.
But it was not meant to be. In the midst of crazy show prep for Crafty Wonderland, my biggest show of the year, I got the call that would be the final one for him from the school.
It was devastating, for both us and the school. They knew, deep down, he was not a malicious kid. He was not purposely disruptive or destructive. They knew he was a sweet, polite kid. But the meltdowns were random and they were explosive and they simply did not have the staffing and the tools at their disposal to keep him there. To this day, I am still so impressed they stuck it out for the three months he was there. BAM goes there now, and I am continually thrilled we have such fantastic care in our small community.
They recommended getting him screened though Early Intervention. Despite all his average/above average assessments at 18 months and two years, I took them up on it.
He qualified for services. Twice a week, he would get to go play and work with the amazing folks at the ESD. It is in the same building as his old preschool, so it was easy to use that as an incentive; if he did well and worked hard, he would get to go upstairs to visit his old friends.
They recommended other screenings, including speech and hearing. He qualified for Occupational Therapy (OT). When his food regression got to an alarming point of no more than four foods, OT was a godsend, and we spent all last summer driving into Portland once a week to work on eating and learning how to parent a kid who is a resistant eater. Four hours a week in the car. With both kids.
We’re doing it again this summer. Emotional regulation occupational therapy for him every other week, speech therapy for BAM every week. I’m thankful it’s a beautiful drive and my guys are good in the car.
Then it came time for Kindergarten. Rob and I struggled; we were on the fence. Do we label him or do we not label him? Do we just redshirt him and wait another year? If we waited, he would have an entire year with no support services, because Early Intervention ended once he reached school age, aka five years old. The ESD told us in order for them to help him, he has to be labeled (ok, they didn’t say it that way, but it was more about having the proper screenings to see if he qualified for services at the grade school level). They couldn’t offer support without it.
They conducted an ADOS, and he has an autism diagnosis at the ESD level. It was not a medical diagnosis, but it gave him the support he needed to start strong in Kindergarten with an IEP (that’s an Individualized Education Plan, which means he has support in school to help him succeed).
At first, Rob and I were conflicted with the concept. We were so misinformed; we thought autism was diagnosed between ages 18 months and two years (where his ASQ was neurotypical at that time). Where the hell was this coming from, at four to five years old?
He has a specialist at the ESD, and she is absolutely phenomenal. She emits positivity and calmness, and has helped us in SO many ways to change how we parent, including understanding that symptoms of autism can manifest themselves at a later age than the typical screenings for it.
He started Kindergarten slowly, attending only half days to start in the Learning Center. The staff there is AMAZING, and we love love love them. He definitely had a rocky start, so they’ve seen the bad, bad, bad meltdowns that not even our immediate family has seen.
But they’ve worked with him. Rob and I have worked with him. Occupational Therapy has worked with him, and education. As in educations for Rob and myself.
He eventually got to attend all day, and spends time in his regular Kindergarten classroom as often as they can make it happen.
But ever since his ESD qualification, I’ve felt like we were in limbo. Sure, the ESD gave him an autism diagnosis, but after reading up about the medical diagnosis and that it can change into other things like ADHD, OCD, etc., I pressed on for a medical assessment.
In April, he had an ADOS by a medical psychologist, and he is indeed autistic.
For him, it doesn’t change anything. My guy will always be my guy, no matter his neurological situation. He’s still the happy-go-lucky, wicked smaht, hilarious kid he’s always been.
For Rob and me, it changes many things, but was also a more definitive point in the right direction. I felt more comfortable buying and borrowing books, reading blogs and Facebook pages dedicated to being neurodiverse since the medical diagnosis. I am still learning and will continue to learn how to best parent him and support him.
It was confirmation, a big one, of why that anchor was there in the first place. The root of why I was (and still am) so tenacious with my business, with my stubborn insistence to have my studio home-based again. Why working full-time outside the home just didn’t feel right.
THIS IS MY WHY.
I’ve been holding this in for so long, not because I was afraid, nor because I wanted to hide it.
I wasn’t ready. I just wasn’t ready. When we were in the thick of things, in the depths of the worst of meltdowns, by him and by us, I wasn’t ready to talk to anyone about it, despite multiple open invitations to do so by people who have been down this road. It was so incredibly isolating, and at times it still is, but I’m getting better about being more vocal about it.
This isn’t a “Woe is me/us” post; far from it. Writing about it, seeing the words on the screen is motivating and empowering for me. I’ve already devoured a few books on autism and the more I learn, I feel more confident as a parent. I’ve learned SO much and there is still so much more to learn.
I’m also getting better about asking for help, something I am notorious for neglecting to do when I need it most.
HOW YOU CAN HELP
Well, if you’ve made it this far in one sitting, bravo! I sat down to write a “Happy Six Year Birthday” blog post and it blossomed into two years worth of things I’ve been holding in.
This will probably be the first and last time I talk about this on this blog. It is not my intention to use my child’s neurodiverse status as a way to make a buck. His status, however, has become a motivator for me to be available for him and help him with access to support and therapies, which does require two things: a flexible schedule and money. Those therapy appointments are not free. While the medical bills are definitely wince-worthy, the improvement we see over time is worth its weight in gold.
But I still need to be able to financially contribute to this family, but also be as flexible as Elastigirl from The Incredibles (sorry, that’s BAM’s Flavor of the Week movie and I nearly have it memorized now). At this point, having a full-time job outside the home is not possible in order to continue making progress and avoid regression.
Thanks for reading. It really means a lot. If I’m compelled to write more about our journey, I’ll end up writing on a completely different blog that is not associated with my business.
If you’d like to know more about autism, I highly highly recommend to look at the experts themselves: autistic people. Yes, doctors and psychologists are well-educated on the subject, but the more I read from folks who are autistic themselves, the more I understand and can empathize.
Hey there, I'm Holly Marsh (Maker/Illustrator/Mama/Nerd), the force behind MarshMueller. I started the company in 2011 after getting frustrated with the ho-hum options in big box stores when creating my first son's woodland-animal-themed nursery. I hand-pick every fabric, thread color, and zipper, design my own sewing patterns, and moosh them all together to create rad products for parents and gift-givers in my Astoria, Oregon studio (aka MarshMueller Secret Labs).
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