by Annie | Sep 7, 2023 | Blog
My brilliant fifth grade teacher had our class memorize a poem by Jack Prelutsky called Homework! Oh, Homework! The opening lines are “Homework! Oh, Homework! I hate you, you stink! I wish I could wash you away in the sink!” Relatable, right?
I was in fifth grade in 1992 and can still recite much of the poem from memory. I remember thinking how cool Ms. Johnson was for letting us acknowledge how much we despised homework. And for a second, some of us thought this poem meant we’d be homework free that year… we weren’t. A great way to start the year, though!
Homework in our house now is usually an anxiety-ridden, multi-hour event. I often find myself reciting the opening prose of that poem in my head while I use every fiber of patience I have to help Fletcher make it through. This is our third year of Fletcher having actual homework – not including his full year of virtual learning which if you don’t mind, I’d rather not relive.
We’ve learned to approach homework differently. While I’d rather just power through and get it all done, that isn’t what works for Fletcher. So we’ve figured out how to incorporate strategies to manage his sensory needs which usually helps temper the amount of stress he feels. Nothing works one hundred percent of the time, but we’ve experienced a decrease in the colossal after school meltdowns and the painstaking procrastination of simply getting started.
I’ve learned that the first few weeks of school (sometimes longer), I can’t plan on getting anything of my own done between Fletcher arriving home after school and bedtime. I found when I tried to cram in responding to emails, flying to meetings or getting anything checked off my to-do list, it added to the level of stress. Eliminating all expectations of myself (outside of getting dinner on the table) has made a huge difference in the climate of our house because I can focus my attention on the boys and getting their immediate needs met… and I’m not stressed out about not getting anything else done.
Tonight Fletcher had two assignments that involved writing and coloring and had to read for twenty minutes. He’ll tell you proudly that he doesn’t craft and writing has never come easily to him so naturally, he’s not a fan. The All About Me page he was assigned was so visually stimulating with boxes and clip art and words that there was no question in my mind as to why he was so stressed. He truly didn’t know where to begin, which object to color first…much less what color to choose. If I didn’t realize what was happening, I would’ve thought he was purposely trying to get out of his homework. But the anguish on this kid’s face over what color to use to shade in an ice cream cone was real.
We broke up his sheet into manageable chunks. One box at a time. He was able to articulate that he thought music might make him calm, so we put his headphones on and he listened to the music of his choice while he worked (letting him choose gave him some control in a situation that felt completely OUT of control for him). Then I offered to use our massage gun to apply a little sensory input to his legs while he worked – that was a winner. The drawing was stressing him out (his words!), so I suggested maybe we do photos instead. We happened to have a polaroid camera for an activity with his brother so he used that, but using a phone and printing out the pictures would’ve worked just the same. That was the ticket. His whole demeanor changed and all of a sudden, my third grader approaching meltdown city became a homework enthusiast. His focus was on getting it done rather than thinking of all the obstacles in front of him. And I took a whole body breath when that shift happened. Because sometimes strategies feel like a hail mary pass in the final 5 seconds of the Superbowl.
Reading rates right up there with writing and crafting on his list of least favorite activities. So to get through his 20 minutes (a 5 minute increase from second grade!) we incorporated movement, breaks, a timer and several venue changes. He read for 5 minutes and then took a break to jump on the trampoline. He read at the kitchen table, on the swing, and then finished on the crashmat. And miracles DO happen because after the reading timer went off, he read for another minute “because I did waste a little of my reading time.”
We make it through homework by taking care of Fletcher’s sensory needs first. We’ve learned it just isn’t productive (or pleasant) to try and force him to get it done by sitting and powering through. Would we like homework to be done in 30 minutes? Sure. But that just isn’t our reality. So instead, we’re prioritizing his sensory needs, building homework in as a major part of our nightly routine and not sweating the small stuff.
As a quick sidenote: As Fletcher has gotten older and work has gotten more challenging, I’ve learned to find my voice with his teachers. Advocating on his behalf as it relates to assignments and expectations has come into play on numerous occasions. Now, with Fletch there’s a fine line between struggling to sit and do the work and not wanting to make an effort (he’s a path of least resistance kid) so we sometimes have to dance around that a bit. But ultimately, we know our kid best. He has experienced enough challenges already, I’m not going to have one or two assignments unravel all the work we’ve done and make school a completely negative experience because we just won’t come back from that. Instead, I figure out with the teacher where we can meet in the middle. Maybe that’s having him articulate his story for me to write down or type if the assignment is about sentence structure and paragraphs, not penmanship. Or maybe it’s having him complete enough math problems to demonstrate proficiency in the concept and leaving it at that. Life for our kiddos has to be about balance and that just isn’t a one size fits all situation – especially for our kiddos who are neuro-divergent with or without sensory needs.
To a manageable, successful and peaceful school year – however that looks for you and yours!
XOXO
by Annie | Jun 8, 2023 | Blog
I’ve been at this for a while. Four and a half years of navigating the sensory needs of our boys with the help of many therapists and practitioners. And as a result, most days I feel like I have a decent handle on things (although it didn’t feel that way in the beginning). There are hard days of course, but even the difficult ones feel far more manageable now than they did when we first embarked on this journey.
But this experience is also incredibly humbling. Even after 4+ years of therapy appointments, adding “tools” to our toolbox and implementing strategies at home, I’m reminded that we’re all still learning. Constantly learning. And sometimes learning feels overwhelming. For all of us.
A few weeks ago, Max had 5 therapy appointments. Three that were our usual speech and OT visits and two that were new. He’s exhibiting some new developments in the area of speech which is really exciting and we’re trying to capitalize on his progress. But with that comes a lot of “new to us” strategies and the expertise and professional opinions of a half dozen or so folks who have been in their respective fields for decades. It’s such a privilege to have access to so many resources, but I ended the week feeling completely overwhelmed as I sorted through recommendations, suggestions, and strategies and tried to piece together what was doable for us (and Max).
The irony is that the new developments are Max communicating to us how he needs to be taught. He’s using his favorite shows (Peppa Pig and Blaze and the Monster Machines) and picking out specific sounds, words and phrases. He has us repeat the phrases being said in his show over and over while he feels the vibration from our vocal cords and watches our mouths intently. After much repetition, he is able to come up with his own approximation of the exact word or phrase he selected. It’s incredible to watch him. He’s so proud of his success and continues to amaze us with his self-awareness.
The strategies being suggested by therapists recently have the potential to positively impact him in several areas, but aren’t necessarily directly supporting the way he’s communicating that he learns. So with a finite amount of time in a day, we’re trying to determine what to focus on, how much to push him, and how to also consider and respect the awareness he has of his own needs.
What I’ve come to understand is that the intentions of therapists and practitioners are typically good and are meant to be in the best interest of the child. But the truth of the matter is a therapist sees a child maybe once a week for forty-five minutes – sometimes even less. They get only a tiny snapshot of a complex child and the life of the family that supports them. And often, they don’t have access to the other therapists supporting the same child so are making recommendations based on simply their own discipline and experience, not necessarily considering what has been suggested by others. That’s not the fault of anyone, but it does demonstrate the holes and gaps that exist in our systems. And it requires caregivers to connect the dots to the extent they’re able.
Parents are with their children all the time. In our case, we’re the safe space, the landing pad, the zone of comfort. And sometimes strategies where a demand is being placed on a child are difficult to implement in the home environment where all they want to do is unmask and bask in the regulation of being in their favorite, safest spot. Beyond that, parents and caregivers are managing households. Often balancing the needs of other children, work, school functions, sports and other activities, family obligations. Is that to say that suggested strategies shouldn’t be implemented at home? No. We’ve found a tremendous amount of success with many things therapists have suggested along the way. But we’ve also had to make choices, sometimes opting out of things that haven’t worked or felt like too much paired with strategies being suggested by other therapists. We’ve ultimately come to the realization that we just simply can’t do it all. And that’s okay. Because every day, we’re bringing our best. And sometimes that’s just what it is.
After a particularly difficult appointment, compounded by the weight of the last few weeks, I chose to take care of myself for a bit. I had a good cry and Max and I took a long drive. We picked up lunch, walked through the grass with our bare feet as we smelled our neighbor’s fragrant lilacs and then relaxed at home for the afternoon – no demands, no work, no strategies. I was completely emotionally exhausted from our appointment, but found joy in watching Max toggle between jumping on the trampoline in just a t- shirt and then running across the yard to swing. All while his face was adorned with the purest smile as he uttered the purest giggles. Salve for the soul.
We regrouped and I was able to take a deep breath and reflect. That particular appointment reminded me that sometimes being a constant advocate for your child is hard. This journey wasn’t meant to be easy, but sometimes it can be a real doozy.
Hang on, friends. If whatever you’re navigating feels hard, it is. Remember to take care of yourselves however you can and always, always feel empowered to advocate for your babies.
by Annie | Apr 1, 2023 | Blog
I’m struggling.
We are raising two neuro-divergent boys in a world that is very different from the one that raised us. Access to technology, social media, availability of information, residual effects of a global pandemic, gun violence, climate change, mental health crises… It’s a lot.
Our boys have vastly different levels of exposure to information based on their respective needs and experiences.
Fletcher attends a school that is kindergarten through eighth grade. It has been a great fit for him. He has had very strong veteran teachers at every grade level who have been the perfect balance of structure and nurturing for him. They have all quickly identified that he is very smart, but often struggles with effort. He needs frequent breaks, and gentle reminders to not shout out answers the minute they pop into his head. And also requires the occasional chat about being mindful of boundaries and personal space.
He is around peers diverse in background, culture, home situation, primary language and age and we are grateful for the rich upbringing that provides. Many of his friends have older siblings. He feels like he IS a middle schooler, so therefore is drawn to them whenever possible (playing basketball or soccer on the playground, for example). And one of the ways he connects with Mike is through football. He’s the ballboy for Mike’s high school football team and spends a lot of time from August through November with high schoolers. This group of young people has embraced Fletcher in ways I could never have imagined. He is one of the team which has been absolutely incredible when it comes to finding a sense of belonging, building relationships and having people to look up to. I love that for him so much. He’s the oldest, so doesn’t have any older siblings to admire. This experience takes care of that for him. And he absolutely lives for Friday Night Lights.
Being a football family has had a profound impact on all of us. Five years ago, Fletcher couldn’t attend Mike’s games because the speaker volume and decibels sent his sensory systems into overdrive and it was meltdown city. That was before we knew he had sensory processing challenges and before he had the language he needed to describe what was happening inside that sweet little body.
So now, this kid is on the sidelines every Friday night. He’s interacting with officials, holding two footballs at once, following the game and knowing when to give a ball to the ref. He’s fist bumping, chest bumping and high fiving these giant high school football players. He stands proudly next to his daddy and without a shadow of a doubt, knows that’s exactly where he belongs. But, that means navigating a world that is more mature than he is which brings with it access to language that as a mom I might prefer he learn a little later in life. The positives trump that though.
Max on the other hand does not attend school. Schools aren’t currently set-up to nurture his success. That’s not anyone’s fault, it’s the nature of how the educational system has evolved. Schools are underfunded, under-resourced and staff are burned out from carrying the burden of having to be everything to everyone for decades…and then through a pandemic.
So Max’s socialization with same-aged peers, or children in general is relatively minimal, although we’re working hard to create opportunities to change that. His learning happens through experience. We are in occupational and speech therapies two times per week each, we swim at a local YMCA 3-4 times per week where he interacts with the staff and senior swimmers before their water exercise class. We make frequent visits to museums, the zoo, libraries and nature centers in the area as well, but we mostly navigate those places on our own. And he spends a lot of time with both sets of grandparents and other members of our family.
I have a lot of control over what Max is exposed to and I suppose there’s some comfort in that for me. That’s very much not the case for Fletcher. He spends quite a bit of time away from home at school and in various activities where neither of his parents are with him. He has an acute sense of hearing. While it’s selective at times, or hard to access when he’s ultra focused on an activity he’s interested in, he hears every adult conversation within earshot, every big word used, every swear word uttered by a peer or high school football player within a 5 mile radius, and takes note of the context. His vocabulary is expansive for this reason, and has been since he could talk. Like policing my driving etiquette at 2 “Mommy, your hands should be at 10 and 2.” Or “Do you have your seatbelt on? Safety first!” (for the record, I always wear my seatbelt ;))
If I had a nickel for every time someone commented on his language acquisition as a little one, we’d for sure have a private jet that could take us on fun little family vacations so we could avoid the sensory nightmare that is an airport. A girl can dream.
Fletcher is eight. His brain doesn’t necessarily compute when it’s the right time or place for a word or phrase. It doesn’t say “just because you KNOW the word doesn’t mean you should use it.” What he thinks, he generally says. Out loud. In public. Sometimes even telling adults about their behavior. He’s responsible for causing hilarity to ensue on a moment’s notice, lots of laughter and humor… but also some of the most cringey moments of my life. You know, balance.
Max is limitedly verbal. Talking is not his primary form of communication…yet. He uses a PECS communication system flawlessly as well as an assistive communication device we call his talker. Both systems are set-up so that he can easily have his needs met. He’ll eventually be able to carry on a conversation with his talker, but isn’t quite there yet. The words he has access to are those that are either pre-programmed, or what we add, based on his likes, dislikes and general needs. He doesn’t have the privilege? of adding words to it that he overhears in someone else’s conversation or thinks are cool because an older kid was using it on the playground.
And then there’s technology and social media. Max NEEDS technology. Fletcher LOVES technology. The lights, the noise, the fast pace, immediate gratification… It feeds so many things for him. But it can also be a parent’s nightmare. Technology isn’t like it was when I was growing up. I was happy with Oregon Trail and maybe a memory game – Pac-Man if I was lucky. These kids have the world at their fingertips using a very intuitive system. It’s simultaneously amazing and terrifying. The constant need to adjust parental controls, getting out in front of what things you KNOW you don’t want your child to be able to access and then the fear of all the things you may not know. Fletcher isn’t on any social media apps, but loves a few shows that are only available on YouTube. That is a rabbit hole in and of itself.
So I’m struggling with how to navigate this very big, information-saturated world full of incredible tools, but also things that can be harmful to littles who don’t even realize what they’re being exposed to.
Fletcher is an empath. He feels on a deep level. He’s kind, compassionate, extremely energetic and bouncy. He’s observant. He’ll be the first to notice your haircut, a tiny bruise on your leg, your squishy arms, and will tell you that you are beautiful as you’re getting ready to leave for work. He’s a giant personality in a body that reflects having tall parents rather than his tender age. And… sometimes he also uses colorful language. I have zero control over that.
I’m struggling with not holding him to an unachievable standard. With letting him be a kid and not feeling like I have to hover, hyper analyze every situation, every interaction with other people, every….thing. While also making sure he stays safe, knowing that many of the people he interacts with don’t know his story, our story.
The caring about other people’s opinions ship sailed a long time ago (or so I thought). I guess I’m afraid of our kids being judged by people they interface with who don’t know what they navigate on a daily basis. Of being disciplined for something they can’t control and can’t verbalize. Their challenges aren’t “visible” necessarily, which often adds an additional layer to life for us.
All this to say, that I’m simply struggling. We’re navigating all of this as it comes – and in the best way we know how.
I’m not coming with any real global solutions at this point. Just the admission that I’m having a hard time – and maybe you are too. Or maybe, you have this all figured out. And if that’s the case, please share your tips and tricks for navigating this complex part of parenting. I know I could use them, and so could many others!
XOXO
by Annie | Mar 28, 2023 | Blog
Dear Parent –
If you’re feeling overwhelmed with the emotional roller coaster of parenting a child with sensory integration challenges, and frustrated by not knowing where to look, who to talk to, or how to get started on a positive path forward, you’ve come to the right place…because about five years ago, I was exactly where you are.
First, I’m sending you a giant mama hug – this kind of journey can be really isolating and incredibly difficult. My husband and I have two boys – Fletcher who is 8 and Max who is 5. Both of our kids have sensory processing disorder, among other challenges. We have learned a lot in the last 5 years. When we were at the beginning of discovering the needs of our oldest, Fletcher, it was difficult to imagine that life would ever feel easier. But it does now. The strategies he’s learned have helped him immensely. And us, too.
If your child isn’t in occupational therapy, I’d recommend asking your pediatrician for a referral ASAP. I have a background in special ed and didn’t realize the breadth of what OTs do until Fletcher started. Now OT plays a big role for both of our boys. Getting an OT eval will let you know if that’s a strategy that might help. We had a horrible initial experience, but have since landed at an amazing place with therapists I can’t imagine life without. (So if you don’t feel supported by an OT or don’t feel like they connect with your child, keep looking.) Our occupational therapists have been a huge support for me, too. Sometimes it’s nice to know when you’re on the right track and they’re really good about letting us know that. I’ve also learned so much from them about effective strategies to implement at home.
I’m including some of the tools we started using with Fletcher when he was 4 that were really helpful for all of us because they gave him some control in situations with regard to naming how he was feeling and/or the root cause (Zones of Regulation and HALT). Visual schedules have also really helped both boys. For kiddos with unique neurology, it can be hard to organize around what’s coming next or what they need to do (morning routine) so I included some information about that here, too.
Following is a description of some of our favorite tools for managing transitions, feelings, emotions, and meltdowns. Emotional regulation was a really critical place for us to start for Fletcher, but everyone is different. To be honest, they’re things that all kids would benefit from.
Visual Schedules: What I’ve learned over time (and it makes total sense!) is that kids (people) with sensory challenges, ADHD, ASD, EBD, etc. struggle to organize around transitions and what’s coming next (and to be honest, so do I!). They often need ample time to help their mind shift – which means that providing them with a visual schedule gives them the tools they need to know what to expect and how to prepare themselves. We have visual schedules for morning, after school and bedtime routines and when he was really little, we made him visual schedules for school as well. We started this when he was 2 without knowing what we were doing because our mornings were really hard. He likes a schedule he can check things off of so I either laminate them or put them in a sheet protector and give him a dry erase marker. It gives him some control which is also key. I attached a few samples.
Zones of Regulation: When Fletcher was three/four his meltdowns were REAL and they were frequent (I’ve also learned that meltdowns are different from tantrums. Tantrums tend to be behavioral and usually stop when a child gets what they want. A meltdown occurs when a child feels overwhelmed by feelings, surroundings, overstimulation, anxiety, etc.). And the problem was he just didn’t have the words to tell us how his body was feeling. Zones of Regulation completely changed that for us. Basically, it works on emotional control and self-regulation by aligning feelings with colors. So we often say “Fletcher, how does your body feel?” and he’ll respond with “yellow because I’m nervous about school” or “red because I’m angry that I can’t have a treat.” But it didn’t start out that way. He’d simply just reply with a color and we’d go to the chart and then try and figure out what was causing him to feel that way. Five years later and we still ask him how his body feels sometimes and he still responds with a color followed by an explanation. This strategy is woven into the fabric of our family. For more information about Zones of Regulation, you might be interested in their website: https://zonesofregulation.com/index.html and I’ll attach some Zones visuals with characters that we really like (Star Wars is a fan favorite here). We have them posted in all major areas of our house for quick reference – even now several years later. It just helps all of us.
HALT: In addition to identifying HOW Fletcher was feeling, it was important to also give him the tools to help us know what he needed. The premise of HALT is that often, emotional dysregulation can be tied to something they need…
H- Hungry (need to be fed!)
A- Attention (need someone to play with them or to feel connected)
L- Lonely (need a hug)
T- Tired (need rest, less stimulation, nap, etc.)
After just a little bit of modeling, Fletcher began quietly going over to our HALT poster to point to what he needed and often, if we addressed that, the emotional dysregulation usually dissipated. The key for him was having some control in being able to name what didn’t feel right.
COMFORT/DEEP PRESSURE: Both of our boys really benefit from deep pressure. So often during a meltdown or difficult moment we think kids need space. Sometimes that’s true, but often they’re actually craving connection but don’t know how to ask for it. Now, during a meltdown or tough moment, we’ll say “do you need a hug?” Ninety nine percent of the time they respond positively and we give them a giant bear hug with some extra squeezes which helps meet some of their immediate sensory needs.
Attached to this post are visuals for Zones of Regulation (not my work), HALT and sample visual schedules.
I’ll start with this. It’s a lot of information and is so much more sustainable in little bite-sized chunks. (I have felt completely overwhelmed for much of our journey as I’ve tried to figure out how to make things work for us…it’s definitely not a one size fits all.)
And I’m here. Reach out. Send me an email, comment on this post, leave a message on Facebook, parents need support, too <3.
Welcome home.
Annie
H A L T – Black and White
Zones of Regulation Printables
Visual Schedule Daily Routine
by Annie | Mar 26, 2023 | Blog
We’ve entered the phase of life where Fletcher and his buddies, in all of their eight-year-old glory, call each other bro or bruh…almost exclusively. I even have the pleasure of being referred to as “bruh” if the circumstances are right, it’s an honor, really :). Some of my mom friends and I have fully embraced this by including bruh in our vernacular. A simple text of “Hi! Bruh is ready to be picked up!.” or “The bros had a great time.” It’s a fun way to show our solidarity in enduring the various phases of parenthood. There are many ahead for which I’m certain I will be ill prepared.
Fletcher is lucky to have a really great core group of friends at school. They’re mostly very close, pretty inclusive and wild about soccer and basketball. Several of his buds are very similar to him. Boatloads of energy, in constant motion, brain moving 1,000 miles a minute, easily distracted, the type who gets report card comments like “he’s such a great kid, but is VERY social.” You know, the modern day, more politically correct way of saying “talks too much.”
With kids in any grade level, there will be conflicts that come up. Mostly, Fletcher and his friends are able to work through them pretty well and move on. I don’t hear too much about squabbles. They’d rather spend their time playing together. Fletcher has a pretty tight-knit grade level that’s diverse in culture, ability and learning style and we absolutely adore that for him. There has never been a question if he’d be accepted and that’s really true about everyone else, too. They help each other out, embrace one another’s quirks, and genuinely care about each other. I sometimes wonder if navigating the pandemic together made them closer.
Fletcher is extremely intuitive and an empath, feeling feelings on a visceral level. He’s pretty aware of his surrounding and voluntarily pinpoints when someone else is hurting and usually makes sure they’re okay. So I was a little thrown off by a message I received from another parent recently indicating that Fletcher had been ignoring her son, requesting he sit somewhere else at lunch, etc. We preach and model kindness and inclusivity at home so my initial reaction was to be really disappointed.
A recovering people pleaser, I had to resist the urge to apologize profusely and take total responsibility for his actions, because I only had one side of the story. Historically, this would’ve derailed me for days. Being a mom is deeply personal for me, which is impacted by the complicated and long journey we’re on. A part of my own journey has been working on processing, addressing and then letting go. I can’t be everywhere all the time to monitor and help navigate situations, I can only do the work at home to make sure Fletcher is prepared.
I had a very polite text exchange with this mom, whom I really respect, and Mike and I had a long talk with Fletcher about kindness and being sensitive to the feelings of others. The rational part of me knows that it is our job to make sure our son has the tools and strategies he needs to be kind. It is not our job to force him to be friends with everyone. That’s a really big, unrealistic expectation – even for adults. He’s allowed to feel frustrated or annoyed at times, or feel that he needs space.
Here’s the honest truth. This is a very age appropriate conflict for two kids their ages and an opportunity for both of them to learn about friendships and healthy boundaries. There are two sides to every story as they say, and I think it’s important to honor that. If this progresses, I’ll be asking the guidance counselor at school to run a circle with the two boys so that concerns can be addressed. But for now, I’m going to let this continue to play out, resist the urge to insert myself, and not project my own feelings or previous experiences onto my child.
Most people don’t know how far Fletcher has come or how hard he’s worked to get to where he is. They also don’t realize that despite how confident he presents and how boisterous and outgoing he is, he struggles, too. He’s a head taller than most of the kids in his grade so he’s frequently perceived as being older and more mature than he actually is. His impulse control, hyper focus during play and sensory integration challenges can present some challenges for him. Sometimes, all of this is really difficult to balance.
Sigh. Friendships can be hard. Even in second grade.
Speaking of friendships, let’s talk about birthday parties.
Last year almost to the day, I wrote about the birthday party conundrum: whether to stay or to go. I was concerned with hovering too much, but I was also nervous to leave – just in case Fletcher got overwhelmed in an unfamiliar environment, had a hart time respecting personal space or had a meltdown. Because of the pandemic, he hadn’t had many opportunities to practice being with a larger group of kids, in a relatively unstructured environment without me.
I opted to leave last year. The conditions were right. Fletcher was attending the party of a dear friend whose parents know and adore him and would have called me if anything came up, so it was a very safe way to give him some independence. He did great. And I was reminded that a little independence is good for him. And good for me, too.
Fast forward a year. We’re in the midst of Fletcher’s power week of 3 birthday parties in 10 days. This kid’s social calendar is lit. He looks forward to these parties and I’ve loosened up a little bit with how to handle whether to drop him off and go or to stick around. I’m the school dropoff/pick up parent so generally know the school families better than Mike does, therefore, I usually do party duty which I don’t mind. Many of the parents have become my friends which is a bonus.
I handle every party individually, but here are the general guidelines I follow:
- If it’s in a structured environment with parents we know well, I’ll generally leave and let Fletcher enjoy the bro-filled hype of an eight-year-old birthday party on his own.
- If it’s an unstructured environment with parents we know well, I kind of feel it out. I may decide to stick around in the background, but could also feel okay leaving. My gut usually takes the guesswork out of it for me. Sometimes I’ll leave for a little bit so as not to hover, but then return in 30-40 minutes to check-in.
- If it’s an unstructured environment with parents we don’t know well, I generally stick around. I’ll bring a book or some work to do and set-up somewhere where I can observe from afar and only intervene if it’s really needed.
- If I’m really unsure, I’ll offer to stay and help, or we may skip it all together, but that would be an extreme situation.
It comes down to this: Level of structure, how well we know the family and safety. Kids are going to be kids. The excitement (and sugar) of a birthday party naturally increases their volume, energy level and general enthusiasm and intensity. I don’t worry too much about that stuff. I just want to make sure Fletcher is set-up for success.
Take aways from this? Friendships and birthday parties alike are about balance. Sometimes that’s hard to achieve with kiddos who struggle with regulation, but it’s possible. Generally, if supportive work is put in on the front end by kids and parents alike, everyone will experience success in the long run.
by Annie | Mar 22, 2023 | Blog
Max had surgery last week. Three pretty routine procedures – ear tubes and the removal of adenoids and tonsils. But with the myriad of other things he has going on, they kept us overnight (which eased my Mama heart in the best way). I was grateful to know we had the support of a whole medical team if he struggled with pain or hydration.
This was his fourth hospital stay in the last year with the most recent (and scariest) being his brain surgery last April. So it was safe to say we were all a little on edge. Not because we were worried about the outcome of the procedures. More that we all had a lot of feelings and were incredibly anxious to have surgery behind us. Anticipation is often the absolute worst part. It’s possible that much of the trepidation came from the reminders of the last year. I know that was a lot of it for me. And Fletcher for sure.
What I know to be true about our little clan is that we all navigate feelings differently. Much like me, Fletcher is the picture of an empath. He feels on a visceral level. Where he’s different is that he is quick to put words to his feelings. He always amazes me with how he articulates exactly what’s going through his head and how it makes his heart feel. I have some things to learn from him.
Mike tends to internalize feelings and works to be stoic leading up to an event. He channels any angst he’s feeling in getting immersed in a show, work, or focusing on something football related. There’s a part of him that feels like he needs to be steady for me. Sometimes that’s true. When he falls apart is on the day of, specifically when Max is taken back for surgery. That’s the hardest for him.
The way I navigate situations like this can best be described as unpredictably, productively messy. I go into hyper overdrive. Cleaning, organizing, checklists, playing out every possible scenario in my head to make sure I’ve thought of absolutely everything, and generally avoiding the things I know will knock me down a few pegs on the anxiety scale. Things like yoga, breath work to regulate my central nervous system, exercise… you know… the really productive ways of navigating anxiety. But on surgery day, a switch flips. The nervous butterflies in my stomach magically disappear and I become a lot like my mom in similar situations. I’m even, matter-of-fact, calm and ready to conquer any obstacle in front of us.
Max is always delightfully himself. He handles my whirling and twirling with ease as he unapologetically reminds me in subtle and not so subtle ways that he has needs that need to be met.
The important thing for us to remember is that all of our feelings are valid and so are the ways we work through them. A part of my fervor is to make sure everyone has what they need to make whatever we’re navigating go as smoothly as possible. Luckily, last year’s big surgery taught us a lot in terms of setting all of us up for success. And I should add, success doesn’t always come neatly packaged with a perfect bow on top.
Here are our go-tos:
Visual Schedules: Both of our boys are very visual. So they each had a visual schedule that let them know what they would be doing, where they would be and who they would be with. Max’s surgery day schedule had things like a picture of the parking garage, the hospital, him in a hospital gown, a photo of his surgeon, him recovering with his blanket, and a picture of Mike and me,
Fletcher’s included his schedule for the day – morning routine, school, getting picked up, being at my parents house, etc. He knew he would be picked up from school by his Mimi and Papa on surgery day, but was feeling like he wanted to know exactly what they would do after school, so he FaceTimed them before bed the night before and he got to help decide how their time will be spent…giving him a tiny bit of control over what’s happening. Control (no matter how big or small) is key for littles in times of uncertainty.
Updated Communication Board: Max uses a communication board as one of his primary ways of getting his needs met. I created a page just for his hospital stay so he would have easy access to the big things he’d likely need to communicate (popsicle, apple juice, water, throat hurts, doctor, etc.)
This time around I also made him a small PECS board (paper communication board with photos of a popsicle, mom and dad, blanket, juice, etc.) to keep with him during surgery so when he woke up in the recovery room before Mike and I were able to see him, he could see our faces, ask for us (or a popsicle), and know we’d be returning soon. It didn’t occur to me to do this for his brain surgery last year and when we got to the recovery room he was inconsolable. That’s the last time I’ll ever make that mistake.
Comfort Object: Before Max’s brain surgery I took both boys to our Children’s Hospital so Fletcher could SEE where his little brother would be during his stay there. We stopped in the gift shop and he picked out a monkey made out of the sequins that you can flip up or down. He took that to school with him the day of Max’s surgery and kept it in his backpack, knowing he could lay eyes on it if he needed to. He decided to do the same thing for Max’s procedure last week. It’s become our surgery comfort monkey of sorts.
Max’s comfort object is his blanket which went with him into surgery and was there with him before we were able to see him. The medical staff tried to put a sticker on his blanket with his name on it. That was a hard pass for him. “If the sticker wasn’t on this blanket when I got here, it doesn’t belong on there at all.” 🙂
Books: Fletcher and I read our favorite books the night before surgery- many of them gifts from my fifth grade teacher (Goldilocks and the Three Dinosaurs, Red and Lulu, Miss Nelson is Missing). Fletcher wanted to read In My Heart: A Book of Feelings by Jo Witek first. My sister sent us this book in the beginning of the pandemic and it’s the best for talking about feelings. The last line is “My heart can feel so many feelings, and yours can too. Today, my heart is proud. How does your heart feel?”
“Nervous” Fletcher said immediately.
“Tell me more,” I said.
“I’m nervous about Max’s surgery. And I can’t picture exactly what I’ll be doing after school tomorrow so I’m nervous about that too.” (Cue FaceTiming his grandparents).
Reading this book also allowed me to share why I was feeling nervous. It normalized and validated the uneasy feeling in our tummies. I’d be lying if I said that didn’t help me, too.
Sensory Tools: We use these moments to dig into our sensory toolbox and bring out our old favorites. Weighted blankets, fidgets, deep pressure, squeezes, heavy work, swinging, etc. It always feels good to fall back on the things we know will work. The night before surgery Fletcher requested a heavy blanket and he slept great. We packed a bag full of Max’s favorite sensory tools to have in the hospital as well. Familiarity in object and action are sometime the best way for us to regulate.
We’re hoping that this is the end of surgical procedures for our family for a while but are grateful for what each of our experiences has taught us about the kind of support we all need before and during a major event.
Surgery went great, recovery has been challenging (a whole blogpost in and of itself), but every day gets a little better.
