by Annie | Mar 22, 2023 | Blog
Max had surgery last week. Three pretty routine procedures – ear tubes and the removal of adenoids and tonsils. But with the myriad of other things he has going on, they kept us overnight (which eased my Mama heart in the best way). I was grateful to know we had the support of a whole medical team if he struggled with pain or hydration.
This was his fourth hospital stay in the last year with the most recent (and scariest) being his brain surgery last April. So it was safe to say we were all a little on edge. Not because we were worried about the outcome of the procedures. More that we all had a lot of feelings and were incredibly anxious to have surgery behind us. Anticipation is often the absolute worst part. It’s possible that much of the trepidation came from the reminders of the last year. I know that was a lot of it for me. And Fletcher for sure.
What I know to be true about our little clan is that we all navigate feelings differently. Much like me, Fletcher is the picture of an empath. He feels on a visceral level. Where he’s different is that he is quick to put words to his feelings. He always amazes me with how he articulates exactly what’s going through his head and how it makes his heart feel. I have some things to learn from him.
Mike tends to internalize feelings and works to be stoic leading up to an event. He channels any angst he’s feeling in getting immersed in a show, work, or focusing on something football related. There’s a part of him that feels like he needs to be steady for me. Sometimes that’s true. When he falls apart is on the day of, specifically when Max is taken back for surgery. That’s the hardest for him.
The way I navigate situations like this can best be described as unpredictably, productively messy. I go into hyper overdrive. Cleaning, organizing, checklists, playing out every possible scenario in my head to make sure I’ve thought of absolutely everything, and generally avoiding the things I know will knock me down a few pegs on the anxiety scale. Things like yoga, breath work to regulate my central nervous system, exercise… you know… the really productive ways of navigating anxiety. But on surgery day, a switch flips. The nervous butterflies in my stomach magically disappear and I become a lot like my mom in similar situations. I’m even, matter-of-fact, calm and ready to conquer any obstacle in front of us.
Max is always delightfully himself. He handles my whirling and twirling with ease as he unapologetically reminds me in subtle and not so subtle ways that he has needs that need to be met.
The important thing for us to remember is that all of our feelings are valid and so are the ways we work through them. A part of my fervor is to make sure everyone has what they need to make whatever we’re navigating go as smoothly as possible. Luckily, last year’s big surgery taught us a lot in terms of setting all of us up for success. And I should add, success doesn’t always come neatly packaged with a perfect bow on top.
Here are our go-tos:
Visual Schedules: Both of our boys are very visual. So they each had a visual schedule that let them know what they would be doing, where they would be and who they would be with. Max’s surgery day schedule had things like a picture of the parking garage, the hospital, him in a hospital gown, a photo of his surgeon, him recovering with his blanket, and a picture of Mike and me,
Fletcher’s included his schedule for the day – morning routine, school, getting picked up, being at my parents house, etc. He knew he would be picked up from school by his Mimi and Papa on surgery day, but was feeling like he wanted to know exactly what they would do after school, so he FaceTimed them before bed the night before and he got to help decide how their time will be spent…giving him a tiny bit of control over what’s happening. Control (no matter how big or small) is key for littles in times of uncertainty.
Updated Communication Board: Max uses a communication board as one of his primary ways of getting his needs met. I created a page just for his hospital stay so he would have easy access to the big things he’d likely need to communicate (popsicle, apple juice, water, throat hurts, doctor, etc.)
This time around I also made him a small PECS board (paper communication board with photos of a popsicle, mom and dad, blanket, juice, etc.) to keep with him during surgery so when he woke up in the recovery room before Mike and I were able to see him, he could see our faces, ask for us (or a popsicle), and know we’d be returning soon. It didn’t occur to me to do this for his brain surgery last year and when we got to the recovery room he was inconsolable. That’s the last time I’ll ever make that mistake.
Comfort Object: Before Max’s brain surgery I took both boys to our Children’s Hospital so Fletcher could SEE where his little brother would be during his stay there. We stopped in the gift shop and he picked out a monkey made out of the sequins that you can flip up or down. He took that to school with him the day of Max’s surgery and kept it in his backpack, knowing he could lay eyes on it if he needed to. He decided to do the same thing for Max’s procedure last week. It’s become our surgery comfort monkey of sorts.
Max’s comfort object is his blanket which went with him into surgery and was there with him before we were able to see him. The medical staff tried to put a sticker on his blanket with his name on it. That was a hard pass for him. “If the sticker wasn’t on this blanket when I got here, it doesn’t belong on there at all.” 🙂
Books: Fletcher and I read our favorite books the night before surgery- many of them gifts from my fifth grade teacher (Goldilocks and the Three Dinosaurs, Red and Lulu, Miss Nelson is Missing). Fletcher wanted to read In My Heart: A Book of Feelings by Jo Witek first. My sister sent us this book in the beginning of the pandemic and it’s the best for talking about feelings. The last line is “My heart can feel so many feelings, and yours can too. Today, my heart is proud. How does your heart feel?”
“Nervous” Fletcher said immediately.
“Tell me more,” I said.
“I’m nervous about Max’s surgery. And I can’t picture exactly what I’ll be doing after school tomorrow so I’m nervous about that too.” (Cue FaceTiming his grandparents).
Reading this book also allowed me to share why I was feeling nervous. It normalized and validated the uneasy feeling in our tummies. I’d be lying if I said that didn’t help me, too.
Sensory Tools: We use these moments to dig into our sensory toolbox and bring out our old favorites. Weighted blankets, fidgets, deep pressure, squeezes, heavy work, swinging, etc. It always feels good to fall back on the things we know will work. The night before surgery Fletcher requested a heavy blanket and he slept great. We packed a bag full of Max’s favorite sensory tools to have in the hospital as well. Familiarity in object and action are sometime the best way for us to regulate.
We’re hoping that this is the end of surgical procedures for our family for a while but are grateful for what each of our experiences has taught us about the kind of support we all need before and during a major event.
Surgery went great, recovery has been challenging (a whole blogpost in and of itself), but every day gets a little better.
by Annie | Mar 8, 2023 | Blog
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.
by Annie | Jan 2, 2023 | Blog
“Comparison is the thief of joy.” The famous quote by Teddy Roosevelt – and now the title of this post – just hit me with an incredible irony.
I identify a word or phrase for each new year. Last year my phrase was “protecting my peace as fiercely as I protect my babies.” This year, I went with one word… JOY.
I’m going to be exceptionally vulnerable for a moment. Sharing the deepest, darkest parts of our journey isn’t necessarily easy, but it’s important. Because I know how alone I have felt along the way and I hate the idea that others may feel the same way.
This morning I was up early with Max and happy to start the new year that way. We played and snuggled a bit with the coziest blanket and I took the time to do some reflective writing, a short meditation and laced up my shoes for a healthy walk with our dog before Mike had to leave for a day-long football obligation. I was feeling really good, ready to take on the highs and lows of a new year, basking in the notion that with a new year comes a fresh start. And we’re all ready for that.
Tonight, just 12 hours later, my anxiety was rearing its ugly head, challenging me to work really hard to get back to a place that even remotely resembled balance. It’s amazing how quickly a switch can be flipped. Scary, really.
Let me fill you in.
A dear friend invited me to her house to watch a football game. Her parents were coming into town and I was excited to see them, so I went for a bit, leaving Fletcher and Max with my parents. A few other friends were there and I was grateful for the time to catch up. In the group were a few people I didn’t know and several children – around the ages of my boys.
We live a pretty insulated life and sometimes I forget that. The pandemic paired with the needs of Max have really led us to center our lives at home, or at least surrounded by people he is comfortable with. I was never a homebody before 2020, but have really come to appreciate all that being home has to offer. Most days, there’s no place I’d rather be. It’s our safe space, our sensory haven, and our reset button.
We spend a fair amount of time with other people, specifically family and close friends, but I’m not frequently around other kids in social situations where my kids aren’t present. That hits differently. And I’ll be honest, I wasn’t prepared for the feelings it would drum up.
The kids at this very casual gathering were quiet, mild-mannered and independent. If you weren’t in the same room, you wouldn’t have known they were there. That alone is incredibly foreign to me. They calmly played and read as their parents chatted and watched the game. None of this was good or bad, it was just so completely different from what I’m used to. It hadn’t even occurred to me to bring my boys, mostly because I knew this wasn’t a situation that would set either of them up for success.
The littles around Max’s age were carrying on conversations, making their needs known with ease. No communication devices, no visual schedules, no barriers, no frustrations. It flowed for them in a way Max has never experienced. The stark contrast between our realities hit me like a ton of bricks.
Let me be clear. I don’t wish our reality was different. My kids are my greatest teachers. They have given us such a rich existence and it’s an absolute honor to be their mom. But sometimes, experiences like this make me wish that their lives weren’t quite so hard. I can rationalize that hard is relative and often get hung up on that, too. Our hard is nothing compared to what many families are navigating, but I’ve realized over time that it’s important to name it and honor it as being difficult and give ourselves permission to process it as such.
Circling back to the small gathering, I was happy to connect with some of my dearest friends, but I left feeling itchy inside. Uncomfortable, squirmy. Not because of anything anyone did…or didn’t do for that matter. But because of the reminder that our life requires a kind of tenacity on the part of all four of us that you only know when you’re living it.
I know better than to compare. Our kids are pure magic… ALL kids are magic. In their own, unique ways. I usually try to focus on the positives and was honestly surprised by how this very casual get together threw me into a total tailspin. Now I’m wondering if it was because I didn’t know other kids would be there. Do I usually mentally prepare myself for something like this without realizing it? Am I just tired and lost perspective for a bit? Am I carrying a weight I didn’t realize and this just felt too heavy to bear? I may never know. And it doesn’t matter. What matters is what I do with these feelings.
When I picked the boys up and we were leaving my parents house, Max said “go go bye bye” all together… a rare occasion where multiple words were used in sequence. I was so excited – but that excitement is something only Mike can ever truly know like I do. At that moment, I was itchy from the unexpected harsh reminder of an ease of things we don’t have…and then elated by a sentence spoken by our sweet boy…a ray of light… and something we DO have. My head was spinning.
I was deep in thought on the drive back to our safe place. My thoughts spiraled. I went from being overwhelmed with the challenges our kids navigate that many of their peers don’t, to being fiercely grateful these boys are ours, to relishing in Max’s spoken sentence… and I ended up feeling frustrated that there will always be people in our lives who may judge the things we do, but won’t truly know Fletcher and Max because nurturing a meaningful relationship with them requires time, effort, space, empathy, and patience. Whew, anxiety is exhausting.
I started out the first day of the new year filled with joy. I snuggled with my baby boy, I listened to giggles erupting from our basement playroom as Fletcher spent the morning with one of his favorite people. I smiled and laughed with my boys and our dear friends as we soaked up the sunshine at the park on this mild winter day. I felt joy on a visceral level.
And then I allowed an overwhelming comparison to throw me completely off kilter, momentarily stealing the joy that enveloped me just hours earlier.
I’ve circled my way back to being grateful for all of the joy we experience – and all of the ways my boys make life so much more meaningful (and joyful)!, but it’s taken the better part of the evening and some writing (my outlet) to get here. This experience reminded me of how important my mental health is and how critical it is that I make time for being present, mindful and fulfilled. Because as the saying goes, you can’t pour from an empty cup. This is a level of mental and physical exhaustion I don’t have room for.
by Annie | Jan 1, 2023 | Blog
I’ve always loved the idea of a new year. A clean slate, new beginning, the promise of simpler, different, less. I’m not sure, however, that I’ve ever yearned for that more than right now. As I sit in my relatively quiet house (Max and I are the only ones up) and relish in feeling well-rested after happily going to bed well before midnight on New Year’s Eve, I can’t help but appreciate the overwhelming gratitude I have for all that a really difficult year taught us – and all that the promise of a fresh start will bring.
When I think of 2022, my mind envisions the most unapologetic tornado. A spinning, windy, powerful mess of hard with the occasional break in the clouds to let the sun shine through. Chaos, change, healing, fear, the constant pivot. All of it. It wasn’t just the process of a scary surgery for Max, or deciding to pull him out of school. It wasn’t fumbling through finding balance in our schedule with therapy appointments, sports practices for Fletcher, football coaching for Mike and work for me. It wasn’t solely trying to maintain a somewhat organized household (that’s a losing battle most days!), or trying to find a happy medium of time together at home and time with our people. It was all of it – and more,
We aren’t coming out of 2022 unscathed per se, but we’re stronger, healthier, more connected and grateful. I can’t think of a better way to begin a new year to be honest. I’m not suggesting I’d like to experience the lows of 2022 again, but we’re choosing to take the good from the bad and use that as the foundation for this coming year. That feels powerful on some level.
The challenges of this past year helped us experience love on a completely new level. We were loved hard by our families and friends and we felt it. We (I) learned to accept help and support in ways we didn’t know we needed and that forever changed me. We were reminded of the importance of trusting our instincts, that there is no job more important than being relentless advocates for our children, and that it’s okay to not have all the answers…we found beauty in trusting the process.
For 2023 I see light. Less stuff, less chaos, less obligation and most of all, less expectation (that’s the gift I’m giving myself). And as a result, more love, more healing, more presence, more balance and always more gratitude. I wish the same for all of you.
by Annie | Nov 8, 2022 | Blog
Max and I are both adjusting to our new normal since he was withdrawn from school two weeks ago. It’s both wonderful and difficult with peaks and valleys by the minute some days. We’re working really hard to establish a routine in our quest to find the perfect balance of structured activity and time to allow learning to happen organically.
The first week he was home, we went to Target. I made him a Target page on his communication device and in an effort to encourage more consistent use, if he requested something from his page, it went in the cart. We had quite the collection of his favorite snacks by the time we left, but it turned out to be a really great way to reinforce the impact that his talker has on getting his needs and wants understood and met. Target trips won’t be this bountiful all the time, but for now, this is how we’re incorporating more communication in a way that yields a quick reward.
Oreos are one of his favorite snacks. Would I prefer apples or carrots? Of course. But Oreos work for him. The texture, the crunch, the perfectly round shape. And one could argue that it’s hereditary – those delightful little cookies don’t stand a chance with his Gramps!
I wasn’t surprised when on our trip down the snack aisle, he picked a package off of the shelf. Unlike the rest of the items that he threw behind him into the cart, the Oreo package remained on his lap. When we got to the checkout, he was absolutely distraught that items were being taken out of our cart and placed on the belt. It became a scene. The sweet woman behind the checkout counter rushed to help get us out of there as quickly as she could, making sure she gave the Oreos right back to him, as it was clear he was especially frustrated that they had to leave him to be scanned.
Once safely returned to his lap, that bright blue package traveled securely with him to the car. And then with him in his car seat to our next errand. The Oreos came with him through the next parking lot, through the next store and back to the car. Not a single cookie was consumed. But periodically, that package was opened with a pair of big blue eyes peering inside…just to make sure all were accounted for.
They traveled with him in the stroller to pick up his big brother from school that day, back home for our typical after school routine, and they finally landed in a carefully selected spot on the dining room table.
There they were in all of their Family Size Oreo Cookie package glory. And in Max’s mind, that’s where they would stay. Not to be touched by anyone but him. Even his dad who was excited at the prospect of a tasty after school snack…only until he was chastised by his four-year-old. He quickly put the cookies back.
I thought about this whole Oreo exchange. While cute…ish, I knew this was deeper than simply being attached to cookies. Max is navigating a lot of unfamiliar situations right now with more demands being placed on him regarding communication. It’s conceivable to think that he feels very little control over much of anything. That’s hard.
Lightbulb. Oreos are a comfort. They’re predictably delicious, neatly organized into three rows, and in a shiny, familiar, bright blue package. They can be carried, he always knows where they are, and he gets to control the who, what, when, where and why. Some people have emotional support animals, others people or items…same premise.
We headed back to Target today and I had an idea that would hopefully help us avoid the checkout line meltdown while also helping Max feel like he was in control. I’m certainly not the first parent to use this strategy, but it dawned on me after repeatedly replaying our last trip in my head.
As predicted, Max requested Oreos on his talker again. We headed for that aisle and grabbed a package. Consistent with our last trip, those Oreos settled in for the rest of our trip, nestled in Max’s lap. This time, however, I grabbed a second package and placed it in the cart. When we got to the checkout, I placed the second package on the conveyor belt, kindly asked the clerk to scan that one and then put it aside, as we only needed one package…the one in Max’s lap. She graciously complied and we made it through an entire trip to Target without a meltdown. He didn’t give a flying hoot about any of the other items in our cart. He cared about the Oreos.
Max’s prize possession was safely deposited when we got home – this time on the kitchen table. All was well in his world. Until Fletcher got home from school and helped himself.
So next time, maybe we will buy both packages. One clearly labeled for Max’s discretion and the other for public consumption. Either way, I’m reminded about the importance of providing opportunities for control and predictability – especially during a time of significant change. As an adult with the ability to articulate my needs, wants and fears, I certainly appreciate having control – especially during times of uncertainty. The same courtesy should be afforded to our kids, even if it looks different. In our case, like a package of Oreos.
During times of uncertainty, may you and yours find your Oreos. <3
***Visual supports, such as visual schedules are another way to help littles organize around what’s coming next and what to expect – giving them control in a different sense. We LIVE by visual schedules. In many situations, visual schedules reduce or completely eliminate meltdowns because the minds of Fletcher and Max have time to organize around what’s happening and what’s expected of them. It’s magic for us. That’s a whole post on its own…coming soon***
