"It's more complex than CP"
Yesterday, we had a neurologist consult for the first time ever, so naturally I was nervous about the unknown. For a while, therapists have been commenting that Braveheart shows signs of Cerebral Palsy however he shows a bizarre combination of low tone and spasticity... But apparently the tightening of his muscles seem all voluntary. When we mentioned the suspicion of CP, the neurologist said "oh no, it's more complex than CP". 😮 We learned a new term from the neurologist: sensory ataxia (**swipe left for more info from eyeandear.org). The neurologist seems to think his movements and lack of coordination are related to sensory ataxia. Then there's the Autism Spectrum Disorder piece, the Congenital Heart Defect, the possible effects from being on bypass twice, from sedation, etc... And biggest of all, his genetic difference. So he's delayed but expected to thrive and is making progress for sure! Just slower than the norm.
His rare genes are something I never discuss here because... Well I didn't want to discuss it. But it seems diving into genetics may or may not be the next step in our journey. What we do know: there are no other documented cases of his exact genetic mutation. It may or may not be related to the signs we see in Braveheart. I'm not going to publicly announce the exact genetic mutation but I just want to bring awareness to the fact that there are genetic conditions out there in which there is no scientific or medical background (yet). He's in a few studies so hopefully that will help any cases that come up in the future!
At this point we have a lot to process and a lot of decisions to make, but we are happy to have learned that nothing seems to be neurologically wrong based on what the doctor observed! She'd like us to hold off on an MRI for now but thinks it would be "interesting to see" what his brain looks like. (I'm curious too!) I'm just grateful for a happy, energetic, quirky toddler. Mystery and all!
What's the deal with stimming?
A stim is short for self-stimulatory behaviors. That is behaviors that occur for various reasons, the main cause being the need for sensory input. Our little guy has been stimming for quite a while. In fact, everyone stims in some way; think bouncing your leg up and down when nervous or tapping a pencil in a desk repetitively. However, stimming is more prevalent in individuals of the Autism Spectrum or those with Sensory Processing Disorder. Stims can vary from person to person but the most stereotypical stims of individuals on the Spectrum are headbanging, head shaking, flapping and rocking back of forth. All of which Braveheart does!
Honestly, it's not been a problem for anyone... Until last week.
Last week, little man was shaking his head (like in the first video) and one of his teachers from our home team held his head srill between her hands and told him to stop. It shocked us because we've never seen anyone abruptly stop his stims that way. His reaction was to start shaking his head even harder, followed by what looked like a full body rebelious jig. Definitely on purpose! Which then made her even more annoyed and once again caused her to stop the behavior.
All of this led to us having a talk with his other teacher who is also specialized in behavior. First off, she was appalled of how the behavior had been stopped by the other teacher. And we learned that unless the behavior is harmful (it usually isn't in his case), there's no need to stop it abruptly. In fact stimming helps him cope with what's going on around him. It just may be disruptive to others! So, we usually just redirect him if it's going on for too long. Or if it's the result of him being overstimulated for whatever reason, we stop the source of the overstimulaion and move on to something else.
Little man has various stims that I honestly find quite cute (see 3rd slide) and they do not interfere with his normal function. So no harm!
Anyone else have any stories about/experience with stims? Feel free to share! 👇
#aheartsomejourney #braveheart #stimming #sensoryseeking #autismspectrumdisorder #autism #chdwarrior #heartwarrior #shonescomplex #gdd
Heart Warrior Blanket
I've been working on a project for a while that I've been nervous/not brave enough to announce. This blanket, inspired by my son and many other heart warriors, is the first blanket of a series of blankets I intend to make. I've already listed it in my Etsy shop "heartsomejourney", and they will be made to order. These are about 34x34in (86x86cm) but can be made larger or smaller per request. If you'd like to order a blanket, you can either visit my Etsy shop or just send me a DM. Orders will take about 2-3 weeks to he shipped.
A percentage of each blanket purchased will be donated to the Children's Heart Foundation and Pediatric Congenital Heart Association for CHD research.
In addition to making blankets, I hope to soon make blankets to donate to NICUs and PICUs but supplies cost so the more sales, the more I can also donate!
I enjoy making each blanket with lots of love, positive thoughts, and prayers for healing. They're handmade and not perfect but I'm pretty proud of them! I hope you'll all like them too! ❤️
Squares based on a pattern by @cutecrochetmakes
#heartsomejourneyhandmade #handmade #madewithlove #crochet
#babyblanket #grannysquares #heartwarrior #chdwarrior #chdawareness #congenitalheartdefect