Now you see it. Now you don’t.

by Jen Lee Reeves on September 2, 2011 · 10 comments

in 2011, Disabilities, moreincommon

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.)

{ 8 comments… read them below or add one }

Sheeps Eating Me September 2, 2011 at 10:12 am

This is great. My children are the same – my son’s challenges nebulous and hard to grasp, my daughter’s no less challenging but much easier to understand and address. Your words are moving. Thanks!

Jen Lee Reeves September 2, 2011 at 10:30 am

Thanks for the support!! I knew there were others out there who would understand… it’s hard to verbalize, but I needed to put it out there!

anon September 2, 2011 at 3:10 pm

How odd — I was linked over here and looking at the photo of your kids and I absolutely couldn’t tell who had the physical disability until I read the sentence about your daughter’s arm. Then I had to go back to the pic.

As an aside? Your kids are adorable!

Jen Lee Reeves September 2, 2011 at 3:47 pm

Thank you!

Monica Frame September 7, 2011 at 2:46 pm

I am so glad I’m not the only one!! This article could very easily be about my kids instead of yours. Thanks for sharing and for continuing to support this community, even if it’s about our other kids.

p.s. I’m sure you are supporting Cameron just as much as Jordan, but it’s not as obvious. Struggling to figure something out with your kid(s) means you are trying, and that’s what matters. :)

Jen Lee Reeves September 7, 2011 at 3:16 pm

Thank you so much Monica! I am trying hard… And having a less obvious challenge is a lot harder to talk about… Especially as he gets bigger and his friends start searching sites for the dirt on their friends.

Cathy Cook September 16, 2011 at 9:13 am

Thanks for sharing your children with us; they’re beautiful! I enjoyed meeting you this week!

Jen Lee Reeves September 17, 2011 at 2:08 pm

Thanks so much Cathy! It was wonderful meeting ou as well!

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