by Good Dog! Yellow's and Sebastian's Mom Kimberly
A little over 2 years ago, I posted the below on FaceBook to explain Sebastian’s sensory processing challenges that impact his walking and my hopes around how A Superdog for Sebastian would help him...
Yesterday, we went to Michael’s craft store with Yellow. It was the first time he walked the entire time (without having to ride in the cart or have me carry him). Sebastian was focused on our shopping list and staying next to Yellow.
The fluorescent lights overwhelmed him while we waited in line but he was able to overcome it with some stimming behavior (I call it “the Stevie Wonder rock”). A woman standing behind us didn’t give us a strange look like what would normally happen. Instead, she was kind and complimented his dog.
We finished paying and as we headed to the car, Sebastian proudly carried our shopping bag (another first!).
Two years ago, this kind of outing was something I could only wish for. Something so simple as a trip to the store became a reality yesterday. I could never thank enough all the donors and supporters who made this happen. 💙
June 5, 2016 - FaceBook post
Walking. I never anticipated that walking would consume most of my thoughts. But it does. It's stressful. Like many parents, we cheered Sebastian on when he took his first steps at 10 months old. He progressed quickly from those first few stumbling steps to full on running. Looking back, I had no clue that "walking feet!" would become my daily mantra. I bet that sounds pretty typical, right? Lots of parents yell at their kids to slow down and not run. I wish that was just the case, but there's more to it...
Sounds crazy but it wasn't until right before Sebastian's 5th birthday that we (his occupational therapists and I) realized he doesn't walk. He only runs or wants to be carried.
Why? .... Well, there's a couple of reasons...
1) Sebastian has vestibular dysfunction.
Your vestibular system is the part of your senses that controls movement and balance. It's like internal GPS for your body to keep you coordinated with space and time... But Sebastian's internal GPS is like listening to Siri in a foreign language.
So even though vestibular senses are an unconscious function, Sebastian has to consciously focus on his vestibular actions to maintain balance, hand-eye/eye-foot coordination, postural control, eye control, and even just to get both sides of his body efficiently working together.
2) Sebastian has proprioceptive dysfunction.
The proprioceptive system is what allows us to have body awareness. That is, if you close your eyes right now, your muscle and joint receptors will let you innately know the placement and movement of your body parts. So you don't have to think to know if your sitting, laying down, crossing your arms, etc.
Sebastian's system doesn't give him those signals properly. This is why he still walks on his tip toes, slumps his body, pulls down on my arm when we hold hands, walks stiffly, shuffles his feet, and prefers me to carry him so he can get the deep pressure (aka bear hug) that makes him feel secure in the world.
Can you imagine how exhausting and stressful it would be if you had to focus on all these "little" things just to walk?
What about sitting at a table in a restaurant?
Or trying to keep up with directions during gym class?
Or simply trying to sit and listen to the teacher at circle time.
Sebastian is a superhero in so many ways. Not just because he's able to fly all over the place, has no sense of fear, and can keep going even when he's been hurt. Sebastian's a superhero because throughout all of this --- all of these extra steps he has to take to appear typical --- he perseveres.
He wants to do his work to please his teacher. He wants to use gentle hands to hug his friends. He wants to keep up to play with his brother.
On the days where it's just easier for me to carry him even when I don't want to, I do. If it gives him an ounce of peace in his day to not have to think about how to use his body, it's worth it. It weighs heavily on my mind that I won't be able to do that forever, so I still encourage him to walk. It's a hard balance.
I'm sure you can imagine how sad it feels to get looks and comments from other parents and kids when we take our daily walk to school. Sebastian doesn't notice it- yet. But I do. And I don't blame them because it's not like they know what is going on with Sebastian. It's not fun to get bumped into or ignored when you say good morning. And who wouldn't wonder why a normal looking kid isn't walking like a "big boy". And I'm sure I look like a helicopter mom yelling at him to slow down and use his "walking feet" when he's running ahead.
So while his Superdog will be a great companion for his daily battles of using his body, I hope it will also help change the disapproving looks he gets to empathetic ones instead. Because as cute as he may be, cuteness eventually wears off. And as hard as he tries to do what he's supposed to, tiredness and frustration eventually sets in. And as he grows older and more aware of his differences, it'll be nice to have a superhero dog partner that will always be there for him - so he can finally just be a kid.