I’ve been trying to figure out how to best describe my brain as of late. And I think the closest I can come is a can of alphabet soup that someone has shaken…vigorously. There’s so much swirling around up there and I haven’t had the time or space to sort through it all, much less form the scattered letters into words or thoughts. We have been really busy paving a new path… sometimes fumbling, but mostly, finding our way.
You may recall that several months ago we decided to pull Max out of school. We have not regretted that decision for a millisecond. It was absolutely the right choice for him and for us and we would make the same choice again. That’s not to say that he won’t be enrolled in school again at some point, just not right now and not until it’s the right fit. That’s also not to say that any of this is easy. (This is my plug to TRUST YOUR GUT. When we took Max out of school my gut was the loudest voice in the room. She clearly stated it was time to go. We didn’t know what was next, but it was abundantly clear that staying wasn’t an option…and that was absolutely right.)
Max is doing his learning at home, in therapy, and through lived experiences. We’re out and about a lot. Visiting local museums or the zoo, swimming regularly, practicing using his talker at Target and Costco, hiking, and frequent visits to the library. His growth has been really incredible to watch. Sometimes we have to remind ourselves to stop and take it in. It’s worth it.
Today was a rare day where Max and I didn’t have any therapy appointments. We had a slow morning with heavy work, matching, fine-motor and sensory-based activities and a whole bunch of snuggles.
I was plugging along, just minding my own business, feeling really okay with how we’re managing until I was chopping sweet potatoes for dinner. I had music on in the background. And soon my chest felt just the way it does before a good cry. Heavy, tight and tingly.
I went from really okay to not. In a matter of seconds. Confused, I racked my brain to think of what flipped. Mid-chop, I realized it was a single phone call I had earlier in the day.
About a month ago I learned about a school that sounded like it could be a really good fit for Max – if school in the traditional sense is ever going to meet his needs. I reached out to schedule a tour and didn’t hear back. So I called today. The woman on the other end of the line abruptly stated what I imagine she has told a host of other families. Their tour schedule is full, the enrollment period for next school year is closed and it won’t open again until February of 2024. “Well that makes our decision easy, thank you.” I replied.
But there was this prickly feeling that lingered. And it wasn’t until I was prepping dinner, listening to one of my favorite artists, that it surfaced.
Having a potential option for school for Max next year was a glimmer of hope I suppose. But not necessarily because we feel like he needs something different than he’s getting now. Rather, the shifting of the responsibility of deciding WHAT he needs and HOW he’ll get it. The thought of having an additional team of partners to play a significant role in his education. Others to teach him, to foster his social/emotional learning alongside similar aged peers, and maybe know a little more than we do.
The rational part of me realizes that we know what he needs better than most and are working really hard to ensure he has access to all the experiences and resources that will help him become exactly who he is meant to be. And there’s never any guarantee that an additional team of partners will be the right fit. We have an amazing village of therapists, family members, doctors and friends that pour their love and expertise into our family and we’re so incredibly lucky.
The emotional part of me is exhausted. And worried. And fearful. And grateful. And every other emotion that comes along with parenting and educating in a realm that’s unfamiliar and unpaved. We haven’t just changed course. We’re creating the course.
This course, path, road… isn’t on any map. There is no guide. And it looks nothing like anything that’s remotely familiar to either of us. There’s incredible promise and hope in that, but also this terrifying, nagging voice that says “but what if this isn’t right either?”
I’ve recently had some promising conversations with others about the potential of creating opportunities for Max and other kids who experience life like he does. Things that don’t exist yet in our area, but could play a really important role in promoting the social development of kiddos like ours and also redefine how learning looks for students who struggle in a traditional educational setting simply because it is not designed with their success in mind. THAT’S Hope.
Back to the endless thoughts swirling around in my head. When I can quiet my mind, I realize that a journey like ours, and the one many of you are on… requires a kind of bravery, trust, and tenacity that can take a lot of energy to find.
Bravery to go against the grain, to challenge existing systems that aren’t working, and to be a constant advocate even when (and most importantly) it isn’t comfortable.
Trust in ourselves, our partners, in the dear ones advising us, in our parental instincts, and trusting that our children are our guides and were entrusted to us for a reason.
Tenacity in finding the energy to keep going. Keep trying. Keep creating. Keep loving. The tenacity to keep asking questions, keep searching for answers, and the tenacity to know without a shadow of a doubt that if it doesn’t feel right, it isn’t.
A few weeks ago I sat down with my husband to have him help me figure out how to fit everything in each week – I simply couldn’t find a solution that felt good and there didn’t appear to be anything that could be taken out. That’s usually where I start removing things that are my bucket-fillers which isn’t good for anyone. (Can you tell we’ve been down this road before?!)
He suggested that I get out of the house and do some writing and work on the weekends. I proceeded to give him a whole sermon about the need for family time on weekends blah, blah, blah. He looked at me and said “Annie. We don’t have to do things the way everyone else does. Our weeks aren’t typical. So our weekends might not be either. And that’s completely okay.”
And you know what? He was absolutely right. That simple statement was such a gift because it gave me the permission to let go of the picture I had in my head – the story I was telling myself about how our life should look. And just remembering that now gave me a little boost to keep moving forward on this path of ours that looks nothing like the one others are traveling. While we don’t know where it’s taking us, and it often involves unpredictable twists and turns and a blind spot or two, I can find beauty in the road less traveled. Because it’s ours.
When things on this journey feel hard and overwhelming, I usually need rest. Sending a giant dose of brave, trusting, tenacious love to you and yours. With the hope that you, too, can rest. Thank you for being my safe place to land.