Our child is “different.”
When deciding to have a baby, we dreamed of having a stereotypical one – smart, healthy, happy. Easy. (Whatever the heck that means, right?! Ahh… pre-kid ideas of parenting are just wrong… lol!)
And Leo has been smart, healthy, and happy, but also more.
Ever since he was a baby, there was just something a little different about him.
Which, I must say, I’m very grateful for. He has taught me more about myself and pushed me into a philosophy of parenting, and here, I would have otherwise thought was wrong or weird, but now am passionate about.
(And, Leo, if and when you read this, I want you to know how much we love you. How driven, persevering, resilient, intelligent, sensitive, and amazing you are. Yes, you have some challenges because of the way your body and brain work together, but you are strong and I know you will use it to fuel an empowered, well-lived life. I started this blog to share what we learn about you and how to help you, so other parents with children wired similarly have something to help them find resources – and a family and child to relate to. We are all better together. Love you, sweet boy!)
When he was just 6 months old, he went on a nearly month-long nursing strike – meaning he wouldn’t nurse without the conditions being just right. It took me weeks, even with help from online resources and experienced mom friends, to figure out. It was seriously terrible for both of us (but we overcame it, thank goodness for baby carrier nursing, yaya!).
When my husband and I would catch colds and cough in the middle of the night, he would startle awake and cry inconsolably.
Dogs were scary. Fireworks were terrifying.
He scarcely let anyone else hold him, including his dad, late into his toddler years.
Not to mention, I basically couldn’t let him down to do anything, like even brush my teeth or step into another room, for more than a few seconds at a time without him getting very, very upset (goodbye clean house and mowed lawn – and thank goodness for my ring sling and mei tai baby carriers!).
And don’t even get me started on sleeping. It has always taken a lot of time to get him to calm down enough to go to sleep, even as a very young baby – every glimmer of light, movement, minuscule sound, or new visual stimulation would startle him back awake. Even when I got him to sleep, he would wake shortly thereafter – at a year, he was still waking 7 times per night. I stopped wondering when he would sleep through the night at 3 years old.
As a toddler, he loved things that spun (and still does!) – like the washing machine and mixer. I just thought it was cute, even when we had to sit in the laundry room for what seemed like hours while he watched the washer go around and around. 😁
And, he was a serious thrill seeker. The first time we took him to Montana Fair’s carnival when he was just shy of 3, he happily went on the kiddie “tower of terror” (without me) for his first ride and, to my surprise, LOVED it. Like couldn’t get enough of it and other rides kids his age wouldn’t go on – and would laugh and giggle the entire time. (I used to think this was in stark contrast to his other reactions and behaviors, but now see how they relate.)
Then, there were the tantrums.
When things didn’t go the way he anticipated or how he wanted, they were worse and longer than anyone else’s kids. He would throw himself on the floor for long periods of time, kicking and screaming, oftentimes biting and hitting or banging on things to help calm himself.
Since he was my first child, and I’m an avid reader of all things child development and parenting, I always determined his behaviors and tendencies were “normal” and developmentally appropriate – and that he was just a sensitive kiddo who needed a little extra love and guidance and would eventually be able to manage his emotions.
Until he turned 5.
Then, his behaviors started to seem developmentally inappropriate – and maybe even getting worse.
Although he was no longer throwing himself on the floor every night when something didn’t go quite right, he would still be very upset for 15 to 30 minute stretches just about every evening and had a very hard time calming himself down without me intervening in some way… and would still kick or hit or even bite when in this stressed state of being.
To top it off, he was all of a sudden very, very nervous about being out of my sight – anywhere, even at home. He would get freak out if he didn’t know where I was all. of. the. time.
After a particularly tough week in which Leo got very scared at the grocery store when I stepped down an aisle and he continued walking just a few steps past, had a nearly hour-long meltdown after coming home from day care one day (even with me holding him for comfort), and refused to go into the dentist’s office after never having problems previously, I remembered a good friend of mine asking if I had ever thought of seeing if he needs OT, or occupational therapy.
The day she mentioned it, Leo had just had an aggressive outburst and emotional meltdown when playing with her kids after being in a noisy area. She said she thought the sound might have been a trigger for him. (It was far from his first out-of-control moment with her kids, as they went to day care together and were basically like siblings, so she had observed other reactions and behaviors of his as well.)
I didn’t really know what she meant by the comment.
I didn’t even know what OT was or what it stood for.
So, I all but ignored her comment and just filed it away mentally.
(Note to self: when a person who works with children professionally mentions something like that, it’s worth asking what they mean to understand more… it takes a bit of pride swallowing, because you don’t want anything to be “wrong” with your kids, but it’s probably worth your while.)
Then, while the memory of the OT recommendation festering in my mind, I came across a Facebook post on a parenting site I follow that was a fellow parent’s question about a baby who cried inconsolably at a bunch of things like Leo did when he was little – a comment on it recommended getting an OT evaluation.
I was like, “OK, what the eff does OT have to do with all of this?”
“Why would a child need it? Especially one who is so dang smart? How can a child that’s so incredibly bright have something ‘wrong’?” (And I’m not just saying that as his mom, his care providers have all commented on his brains.)
So, like any sane parent, I Googled it. 😉
What I found and learned about was nothing short of profound.
I learned about a disorder called Sensory Processing Disorder on STAR Institute for Sensory Processing Disorder‘s website. I read about some of the symptoms, many of them directly relating to Leo’s, so I kept reading.
I eventually made it to their checklist for parents who wonder if their child has SPD.
I went through it and – bam! – it was like a smack across the face!
I checked off nearly every box in the mini-questionnaire for his age – and when I did the baby/toddler one from memory, too.
Their site had resources galore and confirmed that OT is very helpful for kiddos with sensory processing issues. And that yes, oftentimes very bright kids struggle with sensory processing issues.
I was awash with emotion.
So happy I had found something that might help Leo manage his body and emotions – and help us better teach and guide him. We were running out of ideas and were feeling quite conflicted and overwhelmed, so now we had hope!
But I was also so sad. So disappointed I hadn’t been open to something being “different” about him earlier. We could have gotten him help sooner. How hadn’t I noticed? Or paid better attention to the clues? Or just straight up been open to the thought? Hello, regret. Sigh.
But, as my friends and family reminded me, he is still very young and not even in school yet… many people don’t get their kids help until things get bad in school or the teen years.
So, I put my big girl panties on and dealt with it.
The SPD site recommended a clinic in Billings called Blue Skies Pediatric Therapy.
I gave them a shout and, after jumping through some hoops (i.e. getting a physician’s diagnosis and prescription for OT), we got in for an initial evaluation in mid-November.
The tests they ran were very interesting and eye-opening. They noticed things we never had before and am still amazed we never picked up on.
He still had a few reflexes remaining from birth (which should have been gone) that were hindering his gross motor development, resulting in weak core and shoulder muscles – and making daily tasks very hard for him.
He also had some bilateral coordination issues. He wouldn’t cross his body when doing fine motor tasks, like picking up beads, and would switch hands instead – meaning his nervous system and brain weren’t quite in sync.
And we already knew he was also very sensitive to sound and touch, which meant his nervous system would get overloaded from unexpected loud sounds or touch, affecting how he interacted with others and us, and is another sensory processing issue.
As a result of Leo’s nervous system not quite being in sync, by the end of each day, he was easily overwhelmed and emotional. Just like you and me, when things don’t go our way, we can get a bit “edgy,” but for people – and especially children – with SPD, they have a much harder time managing their emotions and behaviors.
The Occupational Therapist told us that she felt OT would help really help Leo and us, so we’ve been every week since then.
It was wonderful to have this explanation.
To top it off, the initial sessions affirmed our parenting philosophy was on track and exactly how they coach parents who aren’t currently parenting in that manner to evolve to, which was a relief, because I was starting to doubt myself.
Now that we’ve been going to occupational therapy for about 6 weeks, we have gotten a lot of fantastic ideas and resources that have dramatically improved Leo’s life – and ours.
It’s a work in progress, and we still have a hard moments (and sometimes days) here and there, but some of the things we’ve learned and are using in our parental “toolkit” now are:
- Do hard labor – Leo has always been a very good helper and we’d noticed that he was almost always in an excellent mood when he finished, but didn’t know how important it is – especially for him – to do “hard labor” every day. Things like vacuuming couch cushions, stacking wood, sweeping, shoveling snow, and just plain ol’ roughhousing. We’re also working on getting sensory equipment set up in our home (i.e. swings and a “jungle” that’s basically a collection of stretchy hammocks to play in). We hadn’t been diligent about coming up with things to do – especially in winter months – but now we have lists to give us ideas. Whenever Leo seems like he’s getting out of sorts (and isn’t hungry), we work with him to come up with something physical to do. It’s like magic! And we usually get a cleaner house as a result, lol!
- Make a plan – The first thing at every OT appointment Leo does with his therapist is to make a plan. She sets out a collection of pictures of things she wants him to do, then he gets to choose which ones to do and what order to do them in. We’ve started doing this at home – especially on days where Leo wakes up a bit “prickly” – and it’s also like magic! (Although, we have also learned that you have to do the plan exactly in order, or else it’s really hard for him and the shit hits the fan.)
- No more tickling – I have always been sure not to overly tickle my kids, because I remember how much I hated being tickled so hard I couldn’t breathe, but I read in one of the books I bought about SPD that tickling can be especially overwhelming to sensory kiddos’ nervous system and to ask your child whether or not they like it (because it can also calm some of them, depending upon how they are wired). So I asked. Leo said he didn’t like it – and actually got very upset when I asked him about it! So it’s a no-no for us now.
- Bite on chewies – Leo is also oral-motor, so he chews on the inside of his mouth when nervous or bored, sticks out his tongue when doing tasks he has to concentrate on, bites on his shirt, and more. Turns out, there’s a thing called “chewelry” – chewable jewelry – and he loves it! Because he can use it when he’s feeling anxious or needs to concentrate, his nervous system isn’t nearly as out of whack at the end of the day as it used to be.
- Wear weighted blankets and vests – We’ve yet to get these made for home use (they’re freakin’ expensive to buy online), but they’re on our list, and he’s used them at therapy and really liked them. They are calming to the nervous system due to the added weight on the body.
- Do body brushing (Wilbarger Method) – Leo’s occupational therapist showed us this technique for calming the nervous system and it’s another thing he absolutely loves that we’ve seen positive results with. We do it just about daily (should probably do it more) and have found it a wonderful part of our bedtime routine.
We are so grateful to have found these answers for Leo – and us!
I will continue posting about what we learn – because yes, we know there will be more (and there already has been, but this is enough for now) – and how things progress in order to inform our friends, family, and caretakers, while also helping guide and inform others who might happen across this site who are struggling to help their child with his/her emotions and body.
After all, I might not have figured this out if it weren’t for knowledgeable friends and online resources, so I’d like to pay it forward!