by Annie | Jan 12, 2022 | Blog
I realized I don’t share as much about Max on the blog as I do about Fletcher – largely because so many of our universal strategies are most often used with Fletcher. Max is no less of a presence at our family, though. He does everything on his own terms – always has. I’ve said this before, but neither of our kids fits neatly into a box. And we wouldn’t have it any other way. We’re pretty certain that Max has said “you can have your typical child-sized box, and let me show you where to put it. Don’t mind me while I’m over here carving my own path. No boxes allowed.”
We navigate a lot of unknowns with Max which for me often translates into worry and anxiety. Beyond some genetic, sensory and communication things at play, we know how incredibly bright he is and so desperately want to let him unfold in his own time while struggling to not force him to HAVE to check the boxes established by societal norms. He seems to get there when he’s ready. (There isn’t a checkbox on any form for that!).
Max challenges us to think differently and has unapologetically propelled his parents into the roles of fierce advocates, detectives, researchers, protectors and challengers. Despite having few words, he has the wisdom of someone who has been around for a while and the grit to get his needs met under any circumstance. The way his mind works is absolutely fascinating. You have to experience it to really know. He is as charming as he is headstrong and has this spry little way of winning the hearts of those who cross his path, even while he’s gently pushing them out of his bubble.
I’m not sure anything could have prepared me for how rich parenthood would be with our kids – but especially Max. It’s not without challenges, certainly. But the rewards are unlike anything I’ve ever experienced. Three years ago I wasn’t in a place to acknowledge or even realize the rewards. We were barely surviving. Everything felt hard with both kids. But with time and lots of therapy comes wisdom, growth and the ability to take a step back in order to appreciate what’s behind you, in front of you, and what progress really looks like.
Today, for example, was progress embodied. You see, it wasn’t long ago that Max couldn’t wear shoes and socks and was so gravitationally insecure that he needed to be carried, worn or bundled securely in the stroller at all times. The poor guy struggled and at the time we didn’t understand why. There was no playing at the playground (because it was an anxiety-ridden experience for him), no experiencing the world around him from the perspective of standing on his own two feet, and things like walking into therapy were a heart-wrenching production. Every. Single. Time.
Gradually with the help of OT and craniosacral therapy we got the gravitational security figured out and then the shoes and socks. And then he was more willing to walk on his own, eventually running, jumping and now even galloping. But never could he walk the whole way into or out of therapy. The task was far too overwhelming for him.
We’ve been adding more distance incrementally and that often includes a meltdown of sorts which is hard. But then today it happened. He got out of the van with a purpose. He marched himself into the building like a man on a mission and headed straight for the therapy gym. He even let me lead us on a quick detour to fill my water bottle without getting derailed. I was preparing for damage control of epic proportions for altering our normal routine – but it wasn’t needed.
On the way out it was the same thing. We put his boots and coat on, he said goodbye to his speech therapist and off we went. Down the hall, to the right, out the doors, and to the van. Not a peep. I couldn’t believe it. We were there just yesterday for OT and he was beside himself about walking down the hallway after therapy. Today? Not a problem.
For some this might seem like such a small thing, but for us, it was a victory to be celebrated. I gushed over how proud of him I was and he sat tall in his car seat with a smile that spanned the width of his cute round face. He did it and he knew… he was beaming.
2022 has been big for Max already. He whispered two words together during OT yesterday, has actively participated in his virtual learning groups for the last week and a half (which he seems to love), identified and named two colors during a virtual session with his classmates yesterday and has been a really good sleeper. I can’t even find the words to describe all of the emotions wrapped up in this one little paragraph. Things are on the move for Mr. Max.
When I lay with him at night I can really see it. He’s clear, connects differently and is more deliberate in his actions.
Most nights he turns towards me, holds my face in his hands for a little while, looks me directly in the eyes and flashes a sweet little grin as if to say “Don’t worry, Mom. I have this all figured out.” It melts my heart unlike anything else can.
I’ll take that reassurance from now until forever. There’s nothing like it.
Here’s to a year of victories for all… big or small.
by Annie | Jan 11, 2022 | Blog
“Mama?” Fletcher said in a tiny voice as he finally settled into his third chair for virtual learning this morning. He ditched the dining room table and the portable tv table and opted for using a hardcover book as his writing surface for the morning so he could sit in our comfy living room chair with a foot stool. That wasn’t a battle I was going to fight.
“Yeah buddy?” I replied.
“Can I have a hug?”
Mondays are hard for us. The transition from the weekend into a new week is always tricky. Sometimes we’re pleasantly surprised and other Mondays we struggle more than usual. The difficult part is we just never know how it’s going to go so we have to be mentally prepared for any scenario. Also hard. (I did yoga and a little meditation last night in preparation for today. In hindsight, I’m glad I did!)
We’ve started a Sunday night routine to help our brains know that the following day is Monday. We take early baths, get in our cozy jammies and watch America’s Funniest Home Videos together as a family before bed. It’s the only night that AFV is on and the only night we watch it together. It’s also the only night we have that exact routine and we always talk about the upcoming week. Foolproof, right? WRONG.
Today Fletcher was completely blindsided by the fact that it was Monday. He thought with complete certainty that it was Sunday despite the fact that we did our Sunday night routine, had a full weekend together, talked about the week, got clothes set out and made sure we were set for another week of virtual learning. It was a rough way to start the day.
He was clingy, struggled to focus unless I was sitting in the same chair with him (it’s the pressure of creating a Fletcher sandwich between me and the arm of the chair), was irritable, easily frustrated, edgy and ultra sensitive. He couldn’t find a comfortable spot. The chairs didn’t feel right, the table was too high, he didn’t want the exercise ball or heavy blanket, nothing I suggested was a suitable option, and his words were sharp. Despite completely losing it inside, I kept my voice calm and level and worked really hard to continue to validate how he was feeling while providing him with clear expectations, choices and boundaries.
We’ve been at this long enough for me to know that his words and actions were a function of his sensory dysregulation rather than anything I did or said. So we focused on that. I gave him deep pressure and big squeezes, sat in the same chair with him for the majority of his morning meeting so he knew I was close, and made sure I validated how hard mornings can be – especially Mondays. Maybe most importantly, no matter what he did or said, I always offered him a hug and was quick to oblige whenever he asked for one, even when I had to dig really deep. Despite the frustration each of us was feeling, he needed those hugs…and so did I.
After a while he seemed to settle in and participated along with his class. He eventually completed his asynchronous work and by the afternoon was in a completely different frame of mind. We splurged over the weekend and rented Sing 2 so we got one final watch in this afternoon before our rental expired (It’s totally worth it, by the way. Such a great movie. And really amazing for sensory-seekers…Fletcher was up and dancing for most of it!). And he was thrilled to greet his dad at the door and let him know that he was all done with his work for the day. We like to celebrate small wins and the big ones.
Tonight I reveled in some one-on-one time with Fletcher as we read books before bedtime. We mapped out our day tomorrow, taking special care to ensure he knew it was Tuesday which meant school. I gave him the choice of opting out of OT tomorrow night if his body needed a break recognizing how taxing virtual learning is for him (he opted for the break) and then we recapped what went well today. It took him a minute to think of something. So I started listing things that I could think of and pretty soon he had a whole list. I loved ending the day on a positive note, we don’t always take the time to do that, but it was a good reminder for me to incorporate that as often as we can. Here’s hoping we can build off of that list tomorrow.
To a better Tuesday for all! <3
by Annie | Jan 10, 2022 | Blog, Uncategorized
Like most of the country, COVID transmission rates in our community are scary high. So with one day to pivot, we returned from winter break to virtual learning. (We learned last year that we don’t call it school because Fletcher needs to differentiate between virtual and in-person.) Fletcher struggles with virtual even though he does great when he’s at school with his classmates and for the first time, his brother, Max, hopped on the virtual train as well. So we have K-3 and 1st grade virtual learning happening at the same time. It took me a day to get my head in the game and shift from our usual school routine, sift through a little PTSD from our difficult virtual experience last year, call in our village for extra sets of hands and recall some of our best strategies. The rest of the week went much smoother than day one. Our sensory strategies were key.
Here are our top 5 in no particular order:
- Gum: During virtual learning Fletcher is allowed to have gum anytime he needs it. He chews, chomps and blows bubbles all while focusing on what he’s learning. It gives him really important oral input which helps him regulate while having to sit in the same spot for long periods of time. Max doesn’t chew gum, but gets his oral input from frozen chewies, crunchy snacks, and his beloved fruit snacks.
- Multiple Seating Options: In a momentary lapse in judgement on day one last week, I thought the solitude of Fletcher’s room would be the best spot for doing virtual learning. That only resulted in him laying in his bed. Which was okay for a little while (until he was completely under his covers!), but ultimately didn’t work in the long run. So instead we set him up in the dining room and switched out a chair for an exercise ball. He doesn’t use it all the time, but when he does he is bouncing on it during his lessons – and that helps him focus… that’s a direct quote! You could do something similar with a different kind of cushion, a wobble seat, chair that spins or rolls, etc. You could also incorporate a massage pad if you have a kiddo that really likes pressure. Max doesn’t really sit at all. He roams around his learning space while listening to what’s happening on the computer and occasionally gets some input from jumping on the trampoline. It works for him.
- Movement Breaks: Even when they don’t realize it, their bodies needs loads of movement breaks. So during any break in classes before they do anything else, they have to move. Heavy work comes into play here, but so does swinging, jumping on a trampoline, going for a walk, playing tug of war with the dog – anything to get them active and exerting energy.
- Flexible Scheduling: When his class isn’t meeting synchronously, Fletcher has independent work to do on the computer. Sometimes it works for him to do his independent work during the allotted time, and sometimes it doesn’t. We do it when it works for him. I don’t force it. For example, Friday he was exhausted and burned out from the week of virtual learning so we decided to do his independent work over the weekend. He got up on Saturday morning and knocked it out in 15 minutes almost all by himself without any resistance. And he was super proud of what he was able to do on his own. We also don’t participate in specials. Some kids love classes like art, music and gym. Fletcher enjoys them in person, but virtually they’re the equivalent of watching paint dry for him (no offense to the very talented teachers!). We’ve made the decision to use all of his virtual energy for his core content classes and we opt out of specials. It’s too long of a day otherwise and results in meltdowns. Not worth it.
- Weighted blankets, pressure, and fidgets: When things are really hard, we incorporate a heavy blanket on Fletcher’s lap. Sometimes I’ll provide deep pressure on his arms, hands or back as well… that input seems to him regulate him. And finally, we always have some kind of fidgets available within reach so he has something to keep his hands busy. The fidgets take a little practice as it relates to keeping them in his lap and not interfering with the lesson taking place, but he’s getting that figured out.
I’m simultaneously grateful that my kids are safe at home in the midst of such a COVID surge and exhausted from the circus that takes place here everyday. I know that in-person learning works better for Fletcher especially, and am hopeful it’s safe enough for him to go back soon. Max seems to enjoy being in his home environment while also participating in his school routine and it’s been nice to gain a better understanding of how he connects to lessons and his classmates.
Whether your kids are virtual or in-person this is an incredibly difficult time to be a parent. Sending strength, solidarity, and the gentle reminder to trust your gut when things get really tough.
XOXO
PS: A shoutout to the amazing educators who have learned to pivot on a moment’s notice and are able to bring their nurturing classrooms to the virtual setting when necessary! It’s no small feat, but so appreciated!
by Annie | Dec 5, 2021 | Blog
Like most, we were in complete survival mode from March of 2020 until August of that year. And then something in me flipped. I went from straight survival to complete panic. I couldn’t begin to imagine how we’d survive a pandemic winter without ready access to our swingset and the ability to visit the many sprawling outdoor spaces that our community offers. We were outside as often as possible – Mother Nature had been our greatest gift up to that point, our complete and utter saving grace.
When the panic set in, I immediately ordered a patio heater online and we picked it up at a local hardware store – nevermind that it was a sweltering 90 degrees outside.. I thought that knowing we could be somewhat warm while enjoying a bonfire during our upcoming Wisconsin winter would help. Despite feeling a little better knowing we’d have heat while gathering with a friend or family member outdoors in the middle of a polar vortex, I still felt this relentless nagging fear about being stuck inside during a cold snap without the physical outlets our kids so desperately needed.
So in my unreasonable state of panic, I began scouring Pinterest and everything else the Internet had to offer. I started googling indoor ninja courses and then indoor playsets. They either wouldn’t work for our space, weren’t something both boys could enjoy, or were insanely expensive. I eventually graduated to thinking that maybe we could just create some kind of built-in structure in our basement. How hard could that actually be?! (Note: we’re not the build-it-yourselves kind of people despite really wishing we were!)
I found a few photos online, borrowed an idea or two from each of them and began envisioning our ideal sensory space. We called a local guy we knew who did handy work and pitched the idea. He thought it was something he could probably figure out and had some availability in November of that year (perfect timing!).
In our panic-stricken haze we got to work. We tore out the old basement carpeting, found some interlocking foam flooring that we thought would provide a decent cushion, got rid of our old furniture, taped out a rough design of the structure on the floor, found safe ways for Fletcher to “help” remove the tack strips (!!!) and hoped that this would be the answer to our prayers.
Let me tell you this was one time in my life where my extreme panic and anxiety turned out to be completely worth it. Our basement sensory gym has far exceeded our expectations. What was once a place for random play equipment, an old leather sectional draped with clean laundry begging to be folded and other odds and ends has been transformed into our sensory sanctuary. It’s a gathering place for our boys and the other littles in our pod. Most importantly, it’s where we can play as a family and where our boys have access to the tools that help the most with their sensory regulation. Fletcher told his OT the other day that he likes to go down there when he needs a “sensory break.”
We made it a “yes” zone. Meaning, there’s nothing they can’t jump on. We replaced our old furniture with a giant 7-foot bean bag filled with memory foam (best decision ever). It’s the kind of thing that absolutely envelops you when you lay down to watch a movie, but it also dubs as an epic crash mat. We had our craftsman add a slide, monkey bars, climbing elements and space that we could store costumes and toys underneath. We recently had him come back and add hardware for swings. I modeled it after a set-up at our OT clinic so it allows us to switch out what type of swing or hanging bar our kids want to use – we have come to appreciate and embrace our need for versatility.
We didn’t do all of this at once. We added things as we could. And we were fortunate to have a space that we could ultimately treat as a blank slate. I know that’s not the reality for everyone. Here’s the thing about sensory spaces. You don’t need a lot to provide kids with the sensory input they need, but having some outlets at home is helpful for everyone. A small collapsible trampoline for jumping, maybe some kettle bell weights for older kids, a teeter popper, a foldable mat, resistance bands, a yoga ball for bouncing on and stretching, even a small scooter maybe. There are loads of great ways to incorporate activities that provide necessary sensory input and they don’t have to take up a lot of space. They don’t even need to be permanent to be effective.
As winter is quickly approaching (or here for some of us!), I wanted to share our sensory gym in case you’re in panic mode like I was a year ago. Feel free to comment below if you have questions about our space or are looking for ideas. I’m happy to share what we did. Following are links to some of the key components we included as well.
In sensory solidarity! XOXO
Interlocking foam flooring
7 Ft. bean bag
Crash mat
Hardware for swings
Climbing holds
by Annie | Dec 2, 2021 | Blog
It’s early December and here we are… in that really tricky time between holidays (and both of our boys have December birthdays, too!). Several weeks that are packed with an abundance of things to celebrate and yet riddled with anticipation, excitement, sugar highs, choirs of “how long until?’ and if you’re like me, some anxiety about how to manage all of the things and all of the emotions that are along for the ride.
We do a lot of countdowns, timers, visual schedules, calendars and an intense sensory diet, but Fletcher, bless his heart, gets so laser-focused on holiday related details and has a hard time deviating from those thoughts.
For example…one of my aunts gets the kids advent calendars each year which they love. Fletcher especially looks forward to them. He’s been asking every day for weeks how many days until December 1st. The countdown has been real. So yesterday was the day. He got to search for the number one, carefully open the little cardboard door and remove his long awaited chocolate treat. Perfect. We were good then, right?
Wrong. Because he knows that everyday from December 1st until Christmas Eve he gets to do the same thing. And while this is meant to be something fun for him, it’s a lot of temptation to not open every door in one sitting. And again another balancing act.
After several go-arounds, I know that this time of year is especially intense for us. Intense doesn’t necessarily mean hard, bad, or dreadful. We still find lots of joy. It just requires a different mindset on my part. Being mentally prepared seems to help me pack the extra patience and temper my responses. I know that Fletcher is going to ask the same question multiple times. He’s trying to organize his mind around what to expect when. Understanding that helps me help him. And at almost 7, I’m working hard to help Fletcher come up with his own strategies and ways for managing his excitement and anticipation as well which takes a little bit off of me.
I know that without a doubt the “most wonderful time of year” is anything but for a lot of people and I’m extending holiday solidarity “holidarity” if you will, to anyone else helping kiddos who struggle to navigate such exciting, unstructured and anticipatory times.
XOXO
by Annie | Dec 2, 2021 | Blog
Fletcher has gone to occupational therapy once a week for almost 3 years with the exception of a few months in the very beginning of the pandemic. OT has been a crucial part of our weekly routine and something he has both needed and benefitted from (and if we’re being honest, something that I needed, too!).
The first two weeks of November he had rough sessions, exhibiting behaviors that we hadn’t seen in a really long time. If my kids have taught me anything, it’s to be acutely aware of what they’re trying to communicate with not only words, but actions. Something seemed off. He was resisting swimming lessons, too, and I wondered if maybe he was just burned out.
So along with his OT, we decided to take a few weeks off (of all of his activities) and resume after Thanksgiving. We had been going for so long that I had to check-in and remind myself that taking a few weeks off would be fine (despite my gut reaction of wanting to resist any change in our routine) – and probably good for all of us.
And you know what? It absolutely was. When he returned this week, I wasn’t met with resistance on the way and he had ideas for how he wanted the session to go. During his session, his OT asked him if the break from OT went okay and he replied with “yeah, I think my body needed it.”
Fletcher has always been a perceptive kid with an innate ability to articulate his feelings and needs, but that statement confirmed for me that we made the right choice and that even if he can’t tell us with words, his actions never lie.
Here are my two take-aways from this:
- Sometimes we all need a break. I forget this (often) and am always grateful for the reminder because even our littles who depend on all of the structure we provide them need breaks. If things are feeling like too much, take a little time off. Maybe it’s skipping a week or two of therapy to regroup. Maybe it’s saying no to a gathering of friends or family if the thought of it is overwhelming. Maybe it’s not signing up for a session of an activity. And maybe it’s putting on a movie for the kids and retreating to the other room by yourself to relish in the silence for a second. However it looks, give yourself and your family members the grace and permission to scale back.
- Our kids know. Whether they have the words to articulate it or not, they know. They know when they’re tired, worn out, burned out, frustrated. And often, they know that they need something different than what they’re getting. Meltdowns, tantrums or defiance are all forms of communication and maybe even code for “I’m struggling and I don’t have the words to tell you.” In the moment it can be so hard to see that, especially if as the parent or caregiver you are in fight or flight mode, but when we give ourselves the time and space to take a step back and key into what’s happening, we might just find clarity in their messaging.
The further along we get in our sensory journey, the more it becomes crystal clear that our boys are our north stars. Our guides. Our greatest teachers. And we know that we have to be open to learning from them, it makes life better for all of us. We have a lot of hard moments. But we also have so many things to celebrate. It’s in the celebratory moments that I’m reminded of how far we’ve come.
Three years ago, talking about “how far we’ve come” wasn’t on my radar. I felt like I was drowning in an abyss of unpredictability, big emotions, meltdowns at a moment’s notice and the constant feeling of being overwhelmed. There was no light at the end of the tunnel… we weren’t even IN a tunnel because there certainly didn’t feel like a way out.
When I really need to be reminded of our collective progress, I look up at the ceiling of our van where there are still visible remnants of an applesauce pouch that was launched in my direction during a meltdown. The cap flew off and applesauce went everywhere. I was too tired and deflated to even care that it had gotten on the fabric ceiling of our vehicle. And so there it stayed. When I see it now, I can pause for a moment and think… “I can’t even remember the last time we had a meltdown like that.”
Strength and support. Love and light.
