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***
by Annie | Nov 4, 2022 | Blog
Two years. Thirty craniosacral appointments give or take a few. More than fifty seven hundred miles driven.
Worth every mile, every minute in the car, every dime spent. Worth all of it. Craniosacral therapy has without a doubt changed our lives.
In the height of Max’s sensory journey, he was having meltdowns that could only be described as colossal. We couldn’t always pinpoint the root cause and with very little speech, he couldn’t tell us. They were taxing for all of us. Mostly, though, we felt horrible for him. Sometimes the only thing that would work to calm him was strapping him in his car seat and taking him for a long ride. And even then it could be an hour before he’d find his calm. I’ve honestly blocked out much of that stressful time in our lives.
In the summer of 2020 we were on a hike with friends, one of the only ways we could connect with our people during pandemic times. Max was in his favorite spot – snug in our hiking backpack perched high on his mama, feeling and loving the warm breeze on his face. After a while, it was clear he wanted to venture out of the backpack (which was rare!). We were thrilled! He explored, climbed with help and ran. But things took a dramatic turn when I wouldn’t let him walk right into the rumbling river. He absolutely melted, almost crawling right out of my arms multiple times. My friend stayed with me while our spouses and the other littles kept hiking. She made an observation that hadn’t occurred to me – but was absolutely true. After I wrestled Max and hiked with a screaming, squirming toddler back up to the van and got him safely buckled in, I took a deep breath, completely exhausted, sweaty and thankful that Anna Marie had stayed with me despite me telling her I would be fine. We started to chat and she said “it was almost as if he was trying to crawl back up inside of you.”
And he absolutely was. Being on the receiving end of his meltdowns I hadn’t realized what was happening, but his major meltdowns all resulted in him trying to get back to the place he remembered as being the safest, calmest and most quiet…the womb.
I mentioned this to our team of two occupational therapists who specialize in therapeutic listening and my aunt who has been a tremendous guide and advocate on this journey with both boys. They discussed for a bit and then Aunt Kate suggested that we try craniosacral therapy with her friend who was affectionately called the “baby whisperer.”
We knew nothing about craniosacral therapy (a gentle hands-on technique that uses a light touch to examine membranes and movement of the fluids in and around the central nervous system. Relieving tension in the central nervous system promotes a feeling of well-being by eliminating pain and boosting health and immunity), but were willing to trust the process and try anything at that point. Our boy was struggling and so were we.
We drove a little over an hour for the appointment in early November that year. We were anxious and nervous – so much that it was palpable. When we arrived at her office, we encountered the most lovely occupational therapist who specializes in craniosacral therapy – she was kind, unassuming and grandmotherly like hot cocoa and chocolate chip cookies fresh out of the oven. We immediately felt at ease.
She explained that Max would be experiencing somewhat of a “rebirth” that day. A what?! The work she would be doing would compensate for what he missed by not traveling through the birth canal as a result of being breech and then consequently born via c-section.
First step was the hyoid. The hyoid is the bony structure that surrounds your trachea. She checked Max and his hyoid was up too high which was forcing his jaw and tongue forward and causing a reverse swallow (at almost 3, this was the first we had heard of such a thing!). She adjusted his hyoid and put it back where it belonged and then she checked Mike and me for the same issue. Low and behold, our hyoids were both out of place too. With a quick adjustment she clicked them back into place and we could both feel a difference in our swallowing. Crazy, right?
So here’s where this gets really wild. Max would stick his tongue out of his mouth constantly his first year of life. We thought it was cute at the time – his signature look. But now looking back, he was likely doing that because his hyoid was out of place and pushing everything forward. That made us wonder if his hyoid being out of place had contributed to his difficulty with drinking from a cup and his speech development. It’s entirely possible.
Then she adjusted his upper spine, neck and head. He cried a cry we had never heard before. It wasn’t one of pain – maybe relief? He had a little time to organize around the work she had done and then we packed Max back in the car for our drive home. We were struck by his willingness to give his new therapist a high five and a wave goodbye. He didn’t do that very often to people he knew well, much less someone he had just met. And then he proceeded to babble all the way home. Also completely uncharacteristic. We were hopeful, certainly. But had no idea what this new-to-us therapy would mean in the long run.
We were eager to go back for another appointment a month later and brought Fletcher, too . His experience was a little different but no less impactful. After simply placing her hands on Fletcher’s head and by his ears, Mary asked if he had difficulty with auditory processing. We replied with a synchronous “YES!” That had been a huge challenge for him for a long time and the area of sensory processing that he struggles with the most – even after a few years of occupational therapy. We were amazed that she could identify that. She paid special attention to his upper back, neck, head, ears and eyes that day. His ears required a particularly intense “untwisting” of sorts. Fletch still asks her if an adjustment is “going to be a big one” like he experienced that day. She’s amazing with the way she relates to littles and prepares them for what’s coming.
On the way home from our session with both boys, Max was crying in the car. The high pitch of his cries was one of Fletcher’s biggest auditory triggers. Except not that day. He realized Max was crying and then exclaimed “Mom! My EARS! They don’t hurt! And Max is crying!”
Mike and I looked at each other in disbelief. What was normally an anxiety inducing experience for all of us….wasn’t. If we hadn’t been believers in craniosacral therapy before (which we were), we most certainly would have been then.
Fast forward two years. Here’s how craniosacral therapy has forever changed us…
- In just a few sessions, Max went from gravitationally insecure to having a much better idea of where he was in space. Before we started craniosacral therapy, Max wanted to be carried all the time. I wore him in a backpack or baby carrier almost constantly and he would frequently put me between him and anything that felt overwhelming. He was also incredibly unsteady on his feet. Now, Max walks and runs, climbs, goes down the slide and now understands the enjoyment of exploring and experiencing life on his own terms. His general quality of life has increased immensely.
- Shoes. From age two until he turned 3, Max refused footwear. Now we know it was because the only way he felt secure was to have his bare feet directly on the earth. It was grounding for him, a way to know he was safe and stable. After a few craniosacral appointments, he started to better grasp where his body was in space. We were able to put soft bottomed moccasins on him and then eventually graduate to hard soled shoes. He still doesn’t LOVE having his feet covered, as having his bare feet squeezed is a huge part of his sensory input, but he will wear shoes when he needs to. A huge win.
- Headaches. Max had Chiari decompression surgery in late April of this year which is brain surgery. We didn’t realize that he had a chiari 1 malformation previously, nor did we understand that he probably lived the majority of his little life with intense headaches. We are certain that craniosacral therapy helped relieve that pressure for him prior to his surgery. Looking back, we’re so glad he was getting relief, even when we didn’t realize he was in so much pain.
- Fletcher recognizes the ways that craniosacral therapy helps him. His awareness is staggering. He can tell when it’s time for a session with our beloved Mary and chats with her while she’s working on him like they’re old friends. It has become a part of his therapy repertoire – his big giant sensory toolbox.
- Both of our boys are able to identify where they need our therapist to work her magic. Max now walks into her office and places her hands where he needs a release the most. It’s fascinating and to be honest, gives us so much hope. What he may lack in verbal communication he more than makes up for in the unique and innovative ways he finds to communicate his needs. There’s a wisdom about the way he does so with Mary and we feel privileged to witness it.
- Mike and I now receive craniosacral therapy, too. Mary pinpoints what areas are tight and gives our bodies tune-ups when we visit. The physical implications are wonderful and provide a shared experience for all four of us – one we can all relate to. As parents who often encounter stress and anxiety (and let’s be honest, dysregulation of our own) along our journey, this type of therapy brings a warmth and grounding that we didn’t realize we needed. We leave feeling nurtured, cared for and supported.
- The central nervous system isn’t talked about much at a lay person level when it comes to navigating the sensory needs of children. At least that hasn’t been our experience. What we have learned the last few years is that when we take care of our respective central nervous systems, whether it be through craniosacral therapy, meditation, yoga, breathing exercises or by other means, life is generally calmer and easier for all of us.
We’d recommend craniosacral therapy for absolutely anyone, but especially littles (and adults) struggling with sensory dysregulation. As with any therapy, what’s almost as important as the type of therapy is the actual therapist. You’re looking for a therapist who comes with experience, the ability to relate to and connect with whomever is receiving the therapy, and uses intuition as their guide. Our therapist is an occupational therapist by trade. I’ve also known massage therapists certified in craniosacral. Ideally you’d find someone with experience serving children who can meet them where they are and has a deep understanding of the ways sensory dysregulation can impact the human experience.
Our therapist makes such a difference for us that we’re willing to drive 90 miles one way once or twice a month. She’s that good. If craniosacral therapy sounds like a good fit for your family, I hope that you can find someone like that. <3
by Annie | Nov 2, 2022 | Blog
Parenting can be such a roller coaster. Like the extreme kind that takes you around twists and turns at 100 miles an hour followed by a slow climb just to drop you 75 feet with zero notice.
We’re struggling right now with Max using hitting as a way to express frustration and communicate when he doesn’t understand what’s expected of him. With a lack of verbal communication and a long journey to learning a complex communication device, I totally get why he’s frustrated. I’m frustrated with him.
He’s also four and a half and is asserting his independence anywhere he can. That part is very age appropriate. And let’s not forget that he had brian surgery six months ago to relieve pressure in his head caused by a Chiari 1 Malformation and is learning about life without headaches.
His hitting increased at school about a month ago, but so did the demands being placed on him. He had a really great start to the year. There were very few days where he cried at drop-off (maybe only one) and most days he walked right to his classroom to begin his morning routine.
I was starting to receive feedback almost daily about his hitting and kicking and general resistance to being engaged. After a conversation with one of his teachers the week of parent/teacher conferences I felt especially defeated. He is a very unique learner – very curious, routine-oriented and adept at facilitating his own learning. In many ways, he’s very “Montessori” in the way that he plays and learns which generally works for him. However, he also doesn’t fit the “typical” mold of that teaching philosophy, making it awfully tricky to figure out just where he “fits.”
Our conferences informed us that he was hitting more, wasn’t particularly interested in using his talker at school, was interacting with materials that weren’t intended for him, and repeatedly leaving the classroom unattended (we’re talking about a four year old walking down three flights of stairs, past the front door that leads to a busy street solo). While it wasn’t directly said, what I heard was that he wasn’t a good fit for that environment. I left the conversation reeling.
And in the matter of thirty minutes, this was my stream of thought…
“How do we make this work better for him? Do we request a review/revise of his IEP to increase his time in the special education setting and less time in a classroom with 30 kids?”
“I’m not convinced our district is equipped to create a learning environment that is optimal for the way Max learns. We’re clinging to individual teachers who seem to “get” him but is that sustainable?”
“Can we open enroll him to the district Mike works in so by high school they’ll be at the same school?” “That doesn’t really help us now.”
“Maybe we should open enroll him to the district 70 miles from here where a dear family friend will be working next year. With all of her experience supporting kids with unique needs, that could be a great option for him.”
“I’m just going to home school him. We have such a short window of time before school becomes negative and once that happens, we won’t get him back in any building. He learns best in the pool and in nature. We could base our learning in environments that eliminate the stimulation created by 30 other kids in a class. That would be better.”
“Why are we forcing this? He is 4. He doesn’t legally need to be in school right now! We could power through and work really hard to get him what he needs, but at what cost?”
And then before I realized it, I was crying out of feeling overwhelmed and frustrated. But also the unexpected reminder that our little guy isn’t a traditional learner and most definitely does not fit neatly into a traditional education system…. WHICH I would argue isn’t necessarily set up for most kids to succeed.
The next day, still deep in thought, I saw this beautiful tree standing out among the brush adorning the hill where it appeared. Gosh, what a metaphor for our sweet babe. He’s unapologetically bright, brilliant and bold. He doesn’t fit neatly in a mold because he always has and always will do things in a way that works for him. He’s not like anyone around him and certainly doesn’t blend in – that in itself is a gift.
Mike and I had a long chat. Initially we didn’t arrive at a guaranteed plan moving forward, but definitely weighed the pros and cons of each of my thoughts above along with others. The overall theme of our conversation was the fact that our baby is never going to be a traditional learner, he won’t be a traditional anything. And for that we’re grateful. Watching him grow and evolve is one of our greatest joys. It just gets hard when we encounter systems that weren’t set-up to help kids like Max thrive.
We had a review/revise meeting scheduled for the Tuesday following conferences. My aunt was going to observe Max in the school setting in the morning and join us with her expertise for the meeting. We were going to give the new plan until Christmas and then decide if we’d keep him in school or pull him out at semester. But by the day after conferences, after several conversations, we ultimately decided that a new plan in the existing system still wouldn’t give him the support he needed to thrive in the way we know he can. So we made calls that evening and the following day was his last.
I trusted my gut. All along it was telling me that we needed to pull him, to do a hard reset and set-up things at home in a way that help him strengthen the neuro pathways that support his verbal communication. There were voices telling us to wait, to give it time, etc. But we knew that while we had many things – time wasn’t one of them. We couldn’t risk school becoming a negative situation for Max, as that could have terrible implications for him down the line.
I’m reminded that sometimes as parents we feel content and satisfied with how our kids are being nurtured and developed when they’re not with us. And then in a matter of days or weeks all of that can change – no matter how much we respect and appreciate the other adults in their lives.
There are so many growing pains that come along with raising kids, especially those that have specific needs. The longer we’re on this journey, the more I’m learning to trust my instincts and use the resources we have in order to ensure the best possible outcomes for both of our kids. Sometimes that means challenging the systems in place. Sometimes that means having really difficult conversations. And sometimes it means acknowledging when something just simply isn’t working and fighting like hell to figure out what will.
I have a special education background and a lot of flexibility in my job. I know that positions us differently than many other families. I’m not at all suggesting that if school isn’t working for your child you should immediately pull them out, nor am I suggesting that figuring out how to do school at home is the only solution. What I’m emphasizing is the importance of being your child’s advocate, sticking up for your family and challenging existing systems that are old and antiquated and quite frankly ineffective for so many of our kids.
If you had asked me even a year ago if we’d be doing school at home for Max, I would’ve told you probably not. But here we are. I’m fumbling my way through the first two weeks with library story times, trips to the zoo and nature centers and creating organic learning experiences for Max wherever I can. But I’ll tell you that I haven’t had a single moment of regret.
Is it easy? Absolutely not. But it’s rewarding and a joy to be able to follow his lead even when it’s hard. I’m getting even more insight into who he is as a learner and trying to tweak the way we do things to meet him where he is. That way, if at some point he re-enters the traditional school setting, I’ll have even more of a road map to help set both Max and his educators up for success.
For now, as we navigate uncharted waters, I’ll continue to trust my gut. It’s the brightest, most reliable guiding light we have on this path that often feels dark and unfamiliar.
