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.
by Annie | Mar 10, 2022 | Blog
I received the most beautiful handmade card in the mail today from one of my dearest friends. She’s a person who seems to know just what I need at the exact right moment.
The card contained the following poem:
Pluviophile (A lover of rain; one who finds joy and peace of mind during rainy days. I had to look it up!)
The rain sings against my skylight
Chiming and skidding
A cold, March rain
Welcomed by me
Signaling a breath of hope
It whispers
Spring is coming – hold on
So, I hold on
As I have done eons before
Grabbing my rain slicker
Tramping through puddles
Feet wet because of course
I can’t find my boots
Face wet because of course
I don’t want my hat
The cool, not-snow rain
Reminds me there is a seedtime
Buried underneath that grimy grass
Feeling it blossom in me
In spite of the cold
Because of the rain
And I lift up my face
And sing into the rain.
~Jeanne Anderson
Every bit of this resonated with me, especially the hold on part. I feel like that describes the last several weeks for us and the few weeks ahead. And quite honestly, the life of a parent, and life in a pandemic. We’re holding on.
But also, it’s March. Albeit a mild winter, it’s beginning to feel long and we’re all anxious to spend hours outside – we’re almost to spring, and we’re holding on.
And then the part about feeling it blossom in me – in spite of the cold, because of the rain. That spoke to me the most. We’re holding on for sure, but we’re also growing and will eventually bloom – like the flowers that will come from the seeds buried under the grimy grass.
In this family, we swing in the rain – and the opportunity is just around the corner. Join us. Get outside every opportunity you get, encourage all of the littles in your life to do the same. There is no better salve for the soul than a giant dose of Mother Nature – even if it’s (and especially!) in the rain.
There is hope in holding on.
And may you have or find a friend who knows just what you need in the moment you need it. <3
by Annie | Feb 22, 2022 | Blog
Life is about seasons. We’re in a difficult one. Likely not the hardest season we’ll endure together, but one that is testing us – challenging us in ways we weren’t necessarily prepared for.
I’d qualify the occasional pedicure, date night out, yoga class or workout as self care. They allow you to relax, recharge, reconnect, restore. We need all of that right now, but we also need stability, permission to let go of things, and the ability to let people in for support in ways we’re not accustomed to. And we need to love ourselves and each other through the hard.
We’re home and healing from a traumatic 48-hour ordeal with Max over the weekend, finding comfort in being in our own space and loved and cared for by family and friends. We’re clinging to the familiarity of our routine and allowing ourselves to slowly come down from the chaos by resting and restoring any order that we can. The further out we get, the more manageable things feel.
We’re really cognizant of needing to process all that has taken place so we can free up the mental capacity needed to wrap our minds around what’s next (thank you, therapy!). That process, however, is slow which isn’t how I typically operate. I’m working really hard to be in the moment, take things one day at a time and resist the urge to always be ten steps ahead. With age and experience often comes wisdom, I suppose. Our boys have provided us with many opportunities to learn the past few years.
I was feeling like maybe I was doing something wrong, though. I couldn’t grasp everything that was taking place, was finding it difficult to feel anything really, and aside from our ER escapade, haven’t really cried. And that’s weird, I’m the crier in the family.
My sweet cousin sent me a beautiful message this weekend that provided me with so much comfort. She shared that from her own lived experiences, the brain tends to temper what it allows you to access because sometimes it’s just all too much. I needed to hear that.
It occurred to me that together, and maybe with the help of our brains only giving us access to what we can handle, we’re beginning to move beyond self care to self love and while maybe it’s out of necessity, it’s certainly an opportunity for growth.
Our kids were covered yesterday for a few hours and Mike and I were encouraged to get out of the house. We did just that, taking a drive south to a nearby outlet mall. Did we need anything in particular? No, just time together. Is shopping our favorite? No, not by a long shot. But it was a destination and beyond needing to process things together, I also craved cozy. I had this desire to find all of the soft, cozy, comfy things I could to wrap myself in this week. We went with that. It gave us a purpose.
In the car on the way down, we spent time talking about all the ways we’ve been supported in such a short period of time. People have dropped off meals, treats and the most thoughtful gifts, have sent the kindest, most heartfelt messages, and have wrapped us in the acknowledgement that they’re in this with us. Our people have shown up for us in unexpected ways. Kindness is such a beautiful thing and we’re really feeling it – every thoughtful gesture adds fuel to our strength.
We also took some time to talk about how we’re both feeling. We balance each other out in that way. Mike is the immediate researcher, I am the hopeless optimist. We take different paths to get to the same place. In this case, we’re sitting tight and waiting for more information about Max’s Chiari 1 Malformation. Until we know more, we just can’t make major decisions. But I’d be lying if the elephant in the room isn’t a big one – you never want to even think about any type of procedure involving the brain, but especially not for your baby. No matter how qualified and talented the neurosurgery team is. It’s utterly terrifying.
There were periods of quiet on our drive, too. Simultaneously lost in thought, the weight of the silence palpable – a common understanding of the road ahead and an unmarked path to get there.
We loved and ARE loving each other hard. I knew Mike needed us to process things together (as did I) and he knew that I needed a cozy new sweatshirt, comfy joggers and some soft socks (I also LOVE a good deal, that helped a little, too). As I’m writing this it sounds so strange that I felt like I needed those things. But in the moment, it was what made sense.
We bought our favorite tea and vowed to end our nights with a warm mug together – more cozy and comfy, but in a cup. We committed to exercising through this challenging time for clarity, energy and capacity rather than finding comfort in our favorite take-out which is our usual go-to.
We bought new socks for the boys to get us through this week because neither of us felt like taking on the dreaded task of pairing the socks that live on Laundry Mountain downstairs. We’ll save that for next week. Funny how something seemingly so small – like socks – brings such a tremendous sense of relief. One less thing.
I’m also being really honest with myself about what I have the capacity for during this season. I usually forge ahead, push through, slide into bed completely exhausted at night because I’ve packed entirely too much in. I’m used to being the doer, the problem solver, the helper. Those things define me in a lot of ways. I’ve had to give myself a few pep talks recently, however. I just can’t be all of those things right now and even though on some level it’s just how I do life, I have to lean into the support we’re receiving and pull back on the rest. And I’m finding the grace within to be okay with that.
Our family calendar is filling up with follow-up appointments for Max, an extended three-day EEG monitoring experience next week, another MRI, more x-rays and the addition of qualified and talented folks being added to his team. With each appointment, procedure, test we learn a little bit more. If not a direct answer, certainly another clue to support whether or not we’re heading in the right direction. As his pediatrician confirmed today, we’re navigating several issues simultaneously and they’ll be handled separately until there’s reason to believe that they’re connected.
We’re learning so much with a lot coming at us at once. When I take a minute to pause and reflect, I feel less overwhelmed and more grounded, finding gratitude in the opportunities we have to learn and grow. Not only the new knowledge we’re gaining about the medical things impacting our sweet boy, but also how to support each other in new ways, how to receive the humbling kindness from our village, but also the acknowledgement of what an extreme privilege it is to have so much love and support, access to really talented medical staff, therapy, insurance, and extra snuggles. Beyond the immediate fear that unknowns (and sometimes knowns) provide, there are also things to be celebrated.
