It hit me as I drove to work. My two kids are so very different and their challenges in life are in many ways very opposite. And the fiery sibling rivalry that roars between them is possibly fed thanks to their individual challenges.
After spending a lot of wonderful time with the special needs community online and in person this summer, I’ve been thinking a lot about physical differences and invisible differences. Jordan’s little arm is obvious. It makes people curious but you almost instantly know she’s different. Her brother Cameron has a brain that makes him brilliant at times and challenging at times. He is very emotional (in good and difficult ways), he remembers scary amounts of details from things he likes (especially media he consumes) and he often gets distracted and unfocused at school. Sometimes when he does things, I’ll get stares or he’ll have classmates that don’t want to be around him. It’s heart breaking… because his challenges are so undefined when you compare it to Jordan. We know what her challenges are and we can work on finding the support and services she needs. Cameron’s invisible challenges are uncertain and we never find a set way to help him stay on track. He’s a two steps forward, one step back kind of kid. Luckily we’re always moving forward, but it feels slow sometimes.
I have a hard time describing this challenge. But I feel like I’m in limbo – always searching to find the right ways to support both of my kids and I always wonder if Cameron is left behind. I worry I can’t understand his challenges and I’m not finding the right solutions for him while I seem to have great success for Jordan. I say this… but she is just getting started with her educational experience. I have no idea what kind of challenges await us with her when it comes to the learning side of things. Today she was learning about concepts like “over, under and on.”
Anyway – the disparity between obvious challenges and invisible challenges are verbalized even better by my new friend Rob Rummel-Hudson. He wrote a post about the disability community and the difference between the seen and unseen world of challenges. I’m reading his book about his daughter Schuyler, Schuyler’s Monsters. It’s fabulous. Rob is an honest, kinda profane (in a way I totally enjoy) guy… And I really want my family to hang out with his family… Even if they live in Texas and I don’t. I do know that there’s a fabulous community of special needs families who are getting better at aligning with each other thanks to the Internet. I feel like my support community is growing so I can better help Jordan AND Cameron. That’s a good feeling.
(By the way, the pictures I included were from a mini-photo shoot we did last weekend with my friend Rhiannon of Lollipop Photography.)