by Annie | Oct 28, 2022 | Blog
I’m writing because I honestly don’t know what else to do with my “big” feelings as we frequently call them and this journey sometimes requires an outlet.
First of all, I’ve been struck lately by all the good around us. We were shown incredible love during Max’s surgery in late April and that has carried us through. But I’ve taken notice of the little (but really big) ways people demonstrate love to us when least expected. Just this morning, Max and I were at the grocery store. He was really upset that the cashier was taking items out of our cart to scan them. Recognizing that Max was struggling, the cashier quietly called his colleague over to help him bag so they could get us on our way more quickly. It didn’t require a dramatic scene, he didn’t make a big deal out of it, he simply did it because he knew it would make things easier for us. And I noticed. I have countless other examples like that from just the last few weeks and I wish I could do more than just share a genuine “thank you” as I’m flying out the door to get Max settled.
None of these random acts of kindness, however, are quite at the level of what we experienced late yesterday afternoon.
I finished a different blog post while waiting for Fletcher at OT about making the decision to remove Max from school last week (which I’ll put up shortly) – one of the reasons was safety, as he was quietly leaving his classroom and walking down three flights of stairs by himself – past the front door which lead to a very busy street. We felt like it was just a matter of time before he realized he could push the doors open and get outside the walls of school. The thought of that was completely terrifying.
Ironically, while we were at Fletcher’s appointment, Max got the idea that he wanted to go to the park. He was being cared for by a dear family member who knows him well, loves him beyond measure and is very in tune with his needs. Max was moving around their house as he normally does. It’s essentially his home away from home and he’s very comfortable there. The back door was shut tight but not locked. He’d play in one room, pitter patter to the next, explore, maybe toss a rubber ducky into the bathroom toilet (that’s a new thing!), settle into the couch to watch a show, and do it all over again. When the movement became silent his caregiver thought Max was hiding. Efforts to call his name and search the house came up empty – he couldn’t be located.
Fletcher and I drove in the driveway shortly after. We searched the entire house together and outside – no luck. I decided to drive to the park nearby which Max loves – he is taken there frequently. When I got back in the car to drive the equivalent of three or four city blocks, I heard a police siren and then it abruptly stopped. My heart started to race. I drove one street over, took a quick right and saw a police car across the busy street along with two women…. And MAX.
I whipped into the nearby driveway, got out of the car and scooped Max up. He was hysterical. Not because he was scared necessarily, but because the folks protecting him were preventing him from going to his beloved park.
I learned that the two women had both stopped their cars on the busy road, got out, and ensured Max got to the sidewalk safely. They called the police and stayed with him until the police arrived. I can’t even bear the thought of all of the what ifs. We live in a city where reckless driving is rampant. I’m thanking my lucky stars that these women were driving down that road at the exact time we needed them.
They greeted me with such grace. They were so grateful Max was safe and that I was there. In the moment I didn’t even think to get their names or contact information, but you better believe I’ll be paying it forward. And the police officers were amazing, too. Max was less than thrilled that they were trying to keep him safe, but they handled it all with poise and understanding and no judgment. It was absolutely everything we needed. Kindness, grace, and genuine compassion.
Here’s the honest truth. This could’ve happened to any one of us. Max is with family (including us) 100% of the time. He’s nonverbal and very quiet, but wickedly smart. He is an adept nonverbal communicator and has a tenacious way of getting his needs met. Apparently even if it means walking himself to the park. We’re vigilant about locking doors and always knowing where he is, but as he grows older and smarter, it’s becoming increasingly more difficult to stay two steps ahead of him.
Our extended family has several examples of how God has demonstrated steadfast love and grace at very critical times. Our experience yesterday will without a doubt be added to that list.
Rather than dwell on all the ways this scenario could have ended differently, we’re choosing to bask in the overwhelming gratitude we have for the angels among us. And also for the love we’re consistently shown – by our support network and by complete strangers. Are there sideways glances from folks in public sometimes? Sure. Nothing is perfect. But if we chose to focus on that, we’d be bitter and angry. And to be honest, the folks making assumptions about our kids and our life aren’t privileged enough to experience all of the really good stuff with us – I feel sad for them in that regard.
Remaining focused on all of the good (which completely outshines the not so good), gives us hope, appreciation, and the capacity to gracefully receive love in the most unexpected ways.
We’re over here pivoting quickly – researching GPS monitoring systems, making communication boards to be placed by all doors, figuring out if we need motion sensor alarms and developing strategies to support Max around the events that took place yesterday so we can prevent that scenario from happening again.
But we’re also taking the time to reflect on how lucky we are to be surrounded by so much good. So here’s to the good. May you seek it, may you give it, and may you experience it.
by Annie | Apr 15, 2022 | Blog
Pouring from a Cup Filled with Overwhelm, Anxiety and Depression
You may know our whole story, you may know parts or maybe you’re new here. Welcome. We’re a family of four navigating sensory processing disorders with both of our boys – ages 7 and 4. They are the greatest joys of our life, but this journey hasn’t been easy.
To be very clear, I’m not writing this for sympathy. I’m clinging to my own vulnerability because I believe so strongly in normalizing the importance mental health, having difficult conversations to support each other in knowing that life is hard and sometimes we just can’t do everything all on our own. And that seeking help is more than okay, it’s paramount.
Our youngest son has really been through it the last eight weeks. In addition to weekly appointments for speech and OT, transitioning from one communication device to a new one and returning to school after a long hiatus because of the Omicron variant, he’s had two hospital stays, two outpatient tests, two sedated MRIs, the removal of a fingernail because of MRSA, and the diagnosis of a Chiari Malformation at the base of his brain. This is the abbreviated explanation, but basically his cerebellar tonsils are growing into his spinal cord and need to be operated on to prevent scoliosis, eliminate extreme headaches and blocking spinal fluid from being able to flow through. So we have a four hour brain surgery ahead of us. In thirteen days to be exact. We’re totally counting.
Our life without all the extra excitement is pretty intense. And I say that in the most loving way possible. But it’s just a lot. A lot of appointments, a lot of learning, a lot of trial and error, a lot of questions, a lot of curiosity, a lot of balancing, a lot of pivoting, a lot of anxiety, a lot of pressure, a lot of stress, but also a lot of happiness, love and strength.
Most days I feel like I have things pretty well handled. At least on the outside. I can mostly keep up with all of our obligations, communicate regularly with both boys’ teachers and therapists, try really hard to manage work (I’m lucky to have a job that is flexible), and even sneak in a few playdates, coaching Fletcher’s soccer team and the occasional date night or coffee with a friend.
I usually don’t experience the feeling of collapsing onto the couch after a long day and thinking “I’m done with everything and now I can rest.” It’s more like “I have a list of 1,000 things that still need attention, but I’m too tired so I’m going to sit here in my numbness knowing that I need to be doing something else, but it’s going to have to wait because I just can’t.” I know so many can relate to the heavy feeling of “the work is never done.”
That feeling has completely taken over since learning about Max’s surgery. The last few weeks I’ve toggled between kind of paralyzed and kind of productive (really only with very concrete organizational projects. If you need containers labeled or drawers cleaned out, I’m your girl. Everything else feels too hard). And totally overwhelmed. To be honest, I’ve towed this line for quite a while, always figuring out how to keep it together, navigate the daily grind and ensure things are relatively in order at home. Maybe a bit of imposter syndrome. Because I’m the girl that has always had it together and I absolutely don’t right now.
In addition to meeting with my amazing therapist, I’ve been on an anti-anxiety medication for a while. Amid all of our current challenges, it didn’t feel like it was doing the trick (and in hindsight it probably hadn’t been enough for longer than that) so my doctor increased my dose a few weeks ago. That helped for a while and then we added more layers to our already chaotic life. I heard the words brain surgery and immediately felt stuck. Like my feet couldn’t leave the ground no matter how hard I tried. I could tell you what needed to get done, but I couldn’t get my brain to tell my body to do it.
The conversation about Max’s pending surgery was like a violent gust of wind that peeled each one of my fingers from the ledge I was already clinging to…without warning, I was sent into the abyss of the unknown. And for someone who likes to have control, that’s one of the scariest places to be.
My husband and I process things in a different order – which is often one of our collective strengths. We both start with information gathering. And then he goes directly to emotion. So, while at our neurosurgery appointment when we learned Max would need surgery, Mike teared up as soon as the doctor left the room. It’s one of the things I love most about him honestly. He’s not afraid to access and show emotions.
I, on the other hand couldn’t cry for three weeks. And it wasn’t until a dear friend looked me in the eyes and said “Annie, how are you doing?” It took me that long to get to a place where I could feel and show emotion. After gathering information and trying to wrap my mind around all of it, I became paralyzed. And then I started furiously nesting. Organizing the pantry, drawers, closets, things that haven’t been touched since we moved into our house six years ago. And honestly, I still can’t let myself think about the magnitude of the surgery and our sweet baby boy. It’s too much, even though we know it’s necessary.
I went to see my doctor for a follow-up yesterday. I was anxious. I’ve put on weight, I’m feeling “stuck,” I struggle with even menial tasks, and I can’t seem to climb out of the puddle of overwhelm quicksand I’m living in. To be honest, there’s shame attached to all of that for me.
When I tell you I’ve never felt more validated by a doctor than Doctor C., it’s not an exaggeration. She has this magical way of meeting me where I am and making sure I leave feeling heard, valued, important and cared for (if that doesn’t sound like your doctor, switch to a new one. You deserve someone like Dr. C.). Beyond prescribing an additional antidepressant to add to my daily regimen, she gently reminded me that my life circumstances warrant feeling all the things that I do. My anxiety melted away with her sincere eye contact and genuine compassion in that moment. And so did some of the shame of feeling like I can’t keep up. I was able to find grace for myself and take a breath deeper than I’ve experienced in weeks. I felt lighter.
“You can’t pour from an empty cup” is a saying I use often. I’ve probably written it a thousand times as well. It’s one of those things I tell my close friends when they’re going through a hard time, but also something I forget to tell myself.
I can tell you with complete certainty that if you can’t pour from an empty cup, you absolutely can’t pour from a cup filled with overwhelm, anxiety and depression. You might as well fill that cup with cured cement. Nothing is coming out.
My family deserves to have a mama whose cup is full enough that I can be available for all of them. And I deserve that, too. Available in a way that isn’t just going through the motions, muscling my way through the day. But in a way that makes me present, in the moment, finding joy. I love joy. I just haven’t been able to feel it much lately.
So for now, I’m perfectly okay with getting support from my therapist and finding comfort in using medication to get me through an exceptionally difficult time. I know that I can’t (and I don’t have to!) do this by myself. I am prioritizing things that bring calm to my life. Doing yoga before bed, enjoying a warm cup of coffee, blogging at a quiet coffee shop, getting lost in a show, going for a long walk. I also know that slowly, I’ll begin to remember what life feels like when I’m not floundering under the weight of so many heavy things.
I want to conclude by saying that grief, feeling overwhelmed, anxiety, and depression are all relative. I’ve had people I love talk about something hard happening in their life and then follow it up with a quick “but this is nothing compared to what you’re dealing with.”
Yes, it is. It’s okay to feel like things are hard and overwhelming without comparing it to what others may be navigating. That in itself is giving yourself grace and validation. Do that every single time.
My wish for myself as it’s also my wish for all of you…
To more joy and more laughter. And light found in the form of support – no matter what that looks like.
A big thank you to all of our family and friends for the ways you’ve supported us during one of the most difficult times in our lives. We are stronger because of all of you.
Love and light, friends. <3
by Annie | Apr 12, 2022 | Blog
Bringing Sensory to the (Easter) Basket!
I always have grand plans of being ultra prepared and then time plows right through said plans and we’re sitting at the week of Easter. I picked up some great sensory toys for our boys’ Easter baskets at Dollar Tree a few weeks ago on a whim which you can view on the first and only TikTok video I’ve ever made, ha. Seriously, though, some really great sensory friendly options.
Fidgets
One of my favorite ways to bring more sensory-based toys and tools into our house is through gift giving. It puts a fun spin on things that also serve a purpose. Fidgets make really great additions to baskets and stockings, things left by Lucky the Leprechaun, or gift toppers if you’re fancy. We have some favorites that I thought I’d share in case you’re looking for some last minute items for your baskets…here are our top five:
Pop-it : Both of our boys (ages 3 and 6) love the pop-its that my sister bought them for Christmas. They’re great because they are much quieter than bubble wrap and are super portable. They are also easily washed in the sink!
Wacky Tracks: Super versatile, also really portable (I usually keep some in the car and/or my purse), and fun to see the various ways kids put them to use. These are used almost daily during virtual learning in our house – they fit very discreetly in a little lap.
Fidget Ball: This thing is like Rubiks Cube meets Pop-It and it’s as fabulous as it looks. Fletcher loves that it’s round and that he can feel the ball popping from one spot to another while he tries to solve the puzzle.
Arrgh! Ball: The Arrgh! ball is one of our favorite new things of 2021. We learned about them from our craniosacral therapist. They’re super fun because they’re squishy, but they also have a little weight to them which provides wonderful input. Both of our boys love the Arrgh! Ball. A quick note of caution: One that we purchased has water beads inside. Looks super cool and adds a textural element to the ball. However, if you have a child with endless curiosity like we do, they may find their way to the plug at the bottom and figure out how to get some of those water beads out (this definitely happened to us within 20 minutes of owning it, ha!)
Therapy Putty: This putty was one of the first tools we received from OT and remains one of Fletcher’s favorites. The containers come in different strengths depending on the level of input you’re looking for. Therapy putty is a great sensory tool disguised by fun colors and compact containers. (We sent some to school with Fletcher in his backpack when he was just beginning his sensory journey and really struggling. It was used as a “take a break” activity for him.)
Basket Fillers
Our good friend Emily the OT is frequently asked about sensory basket fillers for Easter, but also for other occasions like birthdays. Following is her go-to list of tried and true sensory basket fillers:
1-Chewy
2-Chalk
3- Easter Light up spinner toy
4- Water Wow
5-Pop tubes
6-Bath toys
7-Jump rope
8-Sensory drum
9-Poke a dot book
10-Touch and feel books
11-Crinkle paper
12-O ball with scarves
13-Scarves
14-Maracas light up
15-Kazoo
16-Koosh balls
17-Slinky
18-Glow sticks
19-Easter stickers
20-Magic towels (dollar store)
21-Capsule sponge
22-Visual bubbler
23-Puffer chicks
Egg Hunt Sensory Strategies
While we’re talking about Easter and some of the more traditional activities, you might consider some of the following strategies to help your sensory kiddos manage what can sometimes be a chaotic, overwhelming and overstimulating experience…. THE EGG HUNT.
- Visual schedule (create a visual schedule with pictures so your child knows what to expect, the order of activities, where they’ll be looking for eggs, etc.
- Color code eggs: Give each child ONE color egg to hunt for. So Ryan knows ahead of time he is only looking for yellow eggs and Ari knows she is only looking for purple. This cuts down on the anxiety.
- Egg hunt social story – similar concept to the visual schedule above, but another way to lay out expectations and the overall experience.
- Quiet area for breaks: Create a safe space for your kiddo to retreat when/if they’re feeling overwhelmed. With color-coded eggs, the “rush” is eliminated and they can find their respective eggs when it works for them.
- Practice ahead of time!: Create an egg hunt or other hide and seek games prior to the day of so they’re comfortable with what to expect.
Wishing all a low-stress, low-anxiety, enjoyable weekend!
by Annie | Apr 4, 2022 | Blog, Uncategorized
Fletcher is seven and may be well into his birthday party prime, but because of the timing of the pandemic hasn’t had many opportunities to attend parties other than for family. If I’m being honest, not having the pressure of navigating invitations from classmates was maybe a bit of a silver lining during an otherwise difficult few years. It gave us extra time to work through some sensory things with him before putting him in what would have been totally overwhelming situations. The inevitable noise, the joyous chaos and constant movement of everyone around you is enough to send me over the edge much less a child struggling with sensory integration.
I am Fletcher’s sensory regulator. He relies on me to help him navigate situations when he’s too overwhelmed to come up with strategies on his own. He likes the security of knowing I’m in close proximity and knows I will reassure him that no matter how difficult, we’ll figure things out.
His bestie from the block had a birthday recently and invited him to her party. He was so excited. Like “set the timer on Alexa for 5 hours and 47 minutes the morning of the party” excited. And then “ask Alexa how much time is left on the timer every 10 minutes for 5 hours and 47 minutes” excited. He couldn’t wait.
This was a very safe opportunity to give independence a try, as our families are close and they love and understand Fletcher in a way that puts Mike and me completely at ease. Under normal birthday party circumstances where I may not know the family well, I would have stayed for the party, in the background of course.
There’s a fine line between protecting your child’s story by not sharing things about their struggles (that they’d prefer to keep private) with families of their buddies from school and putting measures into place that will ensure their success. To be honest, not all adults understand sensory processing challenges and sometimes that can be tricky, especially when they don’t know your child that well and perceive certain behaviors as defiance or disrespect. I know it’s a part of life, but its hard for me to bear the thought of an adult misunderstanding my child and a situation becoming unnecessarily negative as a result. It’s happened.
Fletcher and I had a long talk about the party and I wanted to let him decide how big (or little) of a role he wanted me to play. This was new territory for both of us.
“Fletch, would you like me to leave or stay?”
“Can you do a little of both? Then I can conquer my fears, but also know you’re coming back soon.”
“Absolutely, that sounds like a perfect solution. I’ll drop you off and get you settled and then come back in an hour, does that sound good?”
“Yeah, I like that idea.”
So that was our plan. I checked in with my friend, the mom of the birthday girl, and let her know how we were going to do things. She assured me that she’d send a text if anything came up before I got back. It was the best case scenario for letting Fletcher find his way in a social situation without me…hovering.
On our way to the party, between asking how many minutes until we would arrive, Fletcher paused and said “Mom? Can I tell you something?”
“Of course, Bud, what’s up?”
“I think I can stay the whole time by myself. My tummy is nervous and excited, but mostly excited. If I start feeling unsure, I’ll just ask Janny to text you and then can you come right back?”
“Absolutely. I think this sounds great. I’ll stay close and if you need me I’ll be there in 5 minutes.”
So THAT is actually what we did. And Fletcher did great. He was confident, comfortable and at ease. And you know what? So was I. Which was a gift. Because when your babies are out there on their own and unprotected it can be really scary for a parent.
Here’s what I think set Fletcher up for success:
- He was super comfortable with both the birthday girl and her parents so he knew he wouldn’t have any trouble asking for help or for them to get ahold of me if he needed something.
- The party was in a structured setting. It was held at a science venue in our area and the majority of the two-hour festivities were facilitated by one of their staff. I think an unstructured situation would have been a little trickier for him.
- We had prepared as much as possible by having several conversations and coming up with a plan together. He really liked having a say in how things would go.
Here’s what set me up for success:
- I was super comfortable with the birthday girl’s parents. We’re close friends, they know Fletcher well and I know they’ll always have his back.
- The party was in a structured setting so I didn’t worry about all of the unpredictable scenarios that can come along with a free-for-all situation.
- We prepared with conversations and came up with a plan together.
Funny how being set-up for success looked almost identical for both of us. Another example of how this journey is such a family affair.
And now we know how we’re going to handle birthday parties and other invitations moving forward. We’ll discuss the structure, decide how much or how little I need to be involved, come up with a plan, and make sure we’re all comfortable with it ahead of time knowing that there is always room to make changes.
Flexibility, mutual trust, communication and a little work ahead of time seem to be the key ingredients to our recipe for social success – along with relying on our sensory strategies and tweaking things as necessary. I know it’s unlikely that every party will go this smoothly, but it sure feels good to have had so much success to begin with. A shoutout to our village people who are on this journey with us and show their support no matter what.
by Annie | Apr 2, 2022 | Blog
I’ve never been the quiet, reserved type, although I’ve learned recently that I’m an introvert/extrovert hybrid and honestly lean more towards the introvert end of that spectrum. I used to resist time alone and now I crave it and need it to recharge.
I’m vocal when I need to be and especially if I’m really passionate about something, but in the past I would defer to the “content experts” in the room – whether it was a meeting, a class, friendly discussion or a doctor appointment.
So when we began our sensory journey I made the grave assumption that the therapists, doctors and specialists on our team knew best. What I learned, however, is that my gut is the real expert.
I’m not talking about the process of diagnosing, being up on current research, or laying the groundwork for a solid medical plan. Those aren’t my areas of expertise and I always listen to what our providers suggest and how they support their decisions to know if it’s something that we feel good about. The last part is important. I can tell by the way my gut feels during and after an appointment if something is going to work for our family or if we need to go back to the drawing board. It took me a while to realize that. But now I really pay attention to it – it’s a knowing of sorts. Intuition at the most granular level.
My kids are my area of expertise. My gut never lies. And I continue to learn to trust that. So when a nurse in the ED a few weeks ago was oblivious to how her constant talking was further agitating Max in an already stressful situation, I was frustrated that I didn’t assert myself and politely ask her to stop talking, as it was putting him into sensory overload (and quite frankly Mike and me, too!). Trust me, that will not happen again. I keep coming back to the idea of “what you permit, you promote” and that helps me assert myself in the toughest, most challenging moments when I need to advocate the most.
I talked about the worst therapy experience we ever had with Fletcher in this post from last year. Never returning to that therapist was the first time I really felt empowered to make that kind of decision on behalf of my boys with regard to their sensory needs. And I’ve made several since.
Ultimately, there is absolutely no one else who can advocate for our boys like Mike and I do. No one. So if not us, then who? We have a responsibility as their parents to be fierce in our quest to provide them with access to the tools they need to live their truest, most authentic lives. Even (and especially!) when we’re made to feel like someone else knows better. No doctor, therapist or educator knows our kids better than we do, no matter how amazing they are, but they do play an important role. Each professional that enters our sensory circle contributes to our collective ability to get our kids what they need – sometimes that means strategies or interventions that are successful and other times it is more about teaching us what doesn’t work. We view both scenarios as positive on some level – even if we’re left feeling frustrated, defeated or unheard. Ultimately, it all helps us get to a place where our kids have access to the tools they need.
As we approach an extensive and involved medical procedure for Max, we’ll be carrying this concept of fierce, unwavering advocacy with us. Advocating for him isn’t a choice. It’s a necessity.
by Annie | Mar 31, 2022 | Blog
We’ve had one heck of a few weeks. Of course, it’s all relative, right. Because considering the devastating events currently taking place in Ukraine and so many other places, we have very little to complain about.
Complain, no. Process, yes.
If we don’t process, we compound. And if we compound, all of that manifests some other way. It’s a vicious cycle.
So we’re working really hard to process despite all of the really really hard things happening around us. The world is so heavy.
Two hospital stays in two weeks wasn’t easy, nor is sifting through all of the information that was thrown at us in that same amount of time.
But this experience has provided a platform for gratitude. Not just in the fact that we were grateful to learn that Max isn’t having seizures or grateful that his finger is healing, but also grateful and privileged quite honestly, to watch Max surprise us in the most encouraging ways.
Max has risen to the occasion. Every single time. As a parent of kids who struggle with sensory integration I know from experience that things rarely go as planned. As such, my brain has been conditioned to prepare for every possible scenario to the best of my ability. And honestly, it’s that part that feeds my anxiety the most. The not knowing what to expect and/or if I’m adequately prepared.
Our first hospital visit was a surprise. So we had nothing with us for the first night except the clothes on our backs and our phones. I had only packed enough diapers and snacks for what we had planned for the day (lesson learned) and we were running on empty.
Despite Max doing fine with minimal access to toys and his regular sensory tools from home on our unexpected hospital stay, I packed up half of our house to go for our extended EEG a few weeks ago. Mike met us at the hospital and wheeled in a wagon full of toys, games, and even a collapsible camping hammock chair that I planned to use if Max needed swinging input. I had all of our chewing, swinging, playing, snacking and deep pressure needs covered. And probably those of every child on our floor. I think on some level, packing and planning was the only thing I felt I had control over. So I did it with fidelity.
Max needed very little of what I packed. It was there in case we needed it, but he was perfectly happy watching a show, eating some of his favorite things, exploring the room, and gazing out of our 7th floor window. I should have realized that. He’s a pretty easy kid all things considered.
I thought for sure he’d rip the electrodes off of his head. He doesn’t wear hats or mittens and is so protective of his face that he doesn’t like anything on or around it. I envisioned them having to reapply the electrodes more than once – I had the whole scene playing on a constant reel in my head. I was mentally prepared for a three day battle even though I knew that Max wasn’t the first kiddo with sensory issues to have an EEG.
The process of the electrodes being applied to his head was the worst part. He didn’t like being confined to a bed, although didn’t hate the body wrap they put him in. He didn’t love the wet glue or the shot of cold air they used to adhere each electrode – but who would? No amount of Peppa Pig or Blaze and the Monster Machines was going to help. So we just gritted our teeth, clenched our fists and got through it.
He had 26 electrodes attached to his head, a gauze bandage wrapped around them, and a knit cap over them that also encased the wires. The wires were a few feet in length and connected to a box in a backpack that he wore around. That was all connected to a 30 foot cord that allowed him to be hooked up, but still mobile. He didn’t love the wrapping so they topped it with a foam helmet that had a chin strap. Also not his favorite.
I just knew we’d be exchanging tugs for the length of our stay, he’d tug on the wires or his helmet and I’d tug them back into place. And that happened for a while. But then, it didn’t. It was as if Max realized this was just a part of the deal and he left it all alone. And in that moment and the moments following, I felt my angst subside a little bit with the understanding that our boy wasn’t just tolerating, he was adapting. ADAPTING.
We returned home after our stay relieved to know that Max isn’t having seizures, but that his pauses are likely a part of his processing. He missed quite a bit of school amidst the Omicron variant and appointments so we were glad to have him return the week following his EEG. There again, while I had a feeling in my gut that he’d return to his normal routine without a stumble, I was prepared for a meltdown that mirrored the beginning of the school year.
When we arrived at school on his first day back, a big smile adorned his sweet face. I got him out of the car and he walked with confidence and then RAN to the door of the building. He saw his teacher, went straight to her and never looked back. My heart simultaneously leaped and melted.
We’ve passed week three of him being back in person and it has been the same thing every day. Not a tear shed. Not even a look of trepidation. Another break through really. He adapted to being away from his peers and his daily routine and then adapted right back no matter how much time had passed.
I was sharing all of Max’s recent successes with my aunt who plays a significant role in the ways we support his development including connecting us with our most amazing craniosacral therapist. She said something that really stuck with me. “You’re seeing less of his challenges and more of his break throughs.” Yes! We absolutely are!
While we have a bit of a scary road ahead in addressing his Chiari 1 malformation at the base of his brain, we’re really looking forward to seeing less of his challenges and celebrating more of his break throughs. Kids are far more resilient and adaptable than we give them credit for. There’s a lot to learn in that.
