Superhero Ben turns 6!

It's been a while again so here's another update about Ben's journey thus far. Sorry this one might be lengthy as we have almost an entire school year to cover. 

Ben recently just celebrated his 6th birthday! Year 6 is bittersweet for me since he's physically out of that toddler phase and doesn't fit on my lap as well and picking him up is a workout to say the least. I know it's all apart of growing up and milestones (not just for him but us as parents as well) but still stings a little if I am being honest. He'll be my baby Ben forever!!! 

From the Doctor:

At his 6yr check up he grew 3 inches and gained 4lbs since August. Medically he is overall healthy and right on track for his growth curve. He receieved a new set of SMO's (braces for his ankles) that continue to help him with balance and stride while he walks. We are also going to have him seen by an ENT soon for concerns about quality of sleep. We have noticed he mostly sleeps with his mouth open (snoring at times) and wakes up super early (sometimes in the middle of the night a few times). Adam has severe sleep apnea so if that's been passed down we'll need to have that addressed as soon as possible. 

As far as what's going on with his syndrome, nothing much has changed, even in the broad spectrum. There is a Facebook group for people with (or parents of people with) Sifrim Hitz Weiss and I'm pretty sure we aren't the only ones frustrated with the lack of further research as more people are being diagnosed. We all understand that research takes time and money but it just seems like any time anyone tries to get anywhere or get questions answered we are just sent back to the original research paper written and told its so rare that there just isn't a need for more info until more people are diagnosed. How do we move forward if we aren't given any where to go? But for now, we have a diagnosis at least and that small FB community to talk through things with. That is a win in my book! 

On to school: 

We knew he was rocking Kindergarten from the start, he's come home exhausted every day and from the notes in his backpack he overall loves school. He is Mr. Social Butterfly, absolutely loves getting to help with the snack cart for his teachers and seems to be a fan favorite to many in the school. I've been approached by several teachers saying "Ben is your son? Oh we just love him, he always comes up and high fives us and is just so happy to see us each day." And he truly is happy to be there!

As a mom of any child (neuro-typical or not) you hope that they behave and are kind while they are away from you. Ben definitely has shown he thrives at school. Here is a note his teacher sent us recently that made my seasonal allergies (I'm not crying, you're crying!) act up. 

All the feels, am I right? 😭 I mean he is sweet at home the majority of the time but we are also his comfort zone so all of his aggression, frustration, anger and other unpleasant emotions get spilled onto us as well. Don't get me wrong, I'll keep it this way. Act out and beat me up all you want, I'm your safe space dude! I'm happy to be your punching bag...just not literally as you get bigger ok bud! 😘

Academically he is on track for Ben. His teachers quickly realized he does things in "Ben Time", at his own pace and isn't going to let anyone rush him. I'm sure that's super frustrating for his associate who helps him because as his mom I can't tell you how many times I've wanted to throw my hands up and do things for him when he's acting like Dash the Sloth from Zootopia getting his shirt on or trying to brushing his teeth but unless you want a melt down, you just let him do it on his time. He has exceeded expectations when it comes to story comprehension and math concepts but is still working out the kinks of reading, writing and speech (although he's much easier to understand than previous years of school). It truly does melt my heart to watch him trace his name on the fogged over door each morning while he waits for the bus. He's come so far in such a short amount of time of learning and there is just so much more to come! I'm sure the challenges are to come with academics getting harder in years to come but for now he is right on track with where he needs to be, for Ben in Ben's time. 

We also signed him up for some adaptive sports over the school year. He absolutely loved Little Ninjas (through Johnston Community Programs), basketball and is currently in soccer (both through CanPlay) and will soon be in baseball through Miracle League. This guy is not letting a little Hypotonia (muscle weakness) keep him still, he loves to move and shake these days. 

As his mom I'm not just elated that he's active and willing to participate, believe me he has no problem jumping in and showing off his dance moves (not shy one bit like both his Papas!), it also reassures me that he is going to be accepted for what he brings to the table and people aren't just looking at him as a child with a disability. They're all there for the same reason and it's awesome to find a community like that. 

Overall to sum it all up healthy, happy and still my personal superhero as we navigate life. To quote you Bennyboy, "You make my life so happy" sweet guy. I can't wait to see what adventures year 6 brings us! 

Thanks for reading!