Thursday, December 12, 2013
When I got up this morning, Ren handed me this. "Sky said we should open it together."
So, we did. And we were both kind of blown away. It's not our birthdays or mother's/father's day. It's just a regular weekday in December.
Although, not any more.
See, I was really in need of a love bomb, too. The last five months have been so great and so hard. We love our new house, and I really do have the best job. But, moving is hard. Everything takes time. The kids have struggled to settle in. And then, the back surgery.
It's difficult to put into words what it's like to go through multiple major surgeries with a loved one. I mean, it's hard, obviously. Life is turned on its ear--the routines fall apart and the work piles up. By about 15 days post-op, I lose my patience with everyone (and especially Ren). Unfortunately, recovery takes much longer. Days 16 to 160 kind of stink. I feel simultaneously pissed off and guilty for feeling pissed off. I'm pretty sure Ren goes through something similar. He feels guilty for being grumpy and for asking me to do things he used to be able to do for himself. We fight. Because he wants to do more and I don't want him to overdo it even when I really do need the help. I can't face the idea of another back surgery, so my pleas with him to let me take care of things have a certain urgency that he doesn't appreciate. It's all so ridiculous and so understandable and so darn frustrating. So, Sky's timing is pretty impeccable.
Thanks for the love bomb, Buddy! We needed it.
Monday, December 9, 2013
As you guys know my 9 year-old son Sky is on the autism spectrum. While his autism is "mild," it impacts every point of contact he has with the world around him--his senses, his understanding of language, and his ability to read social cues. We received his diagnosis three years ago this week, and every year, I try to commemorate what I've come to see as this rebirth in some way. It wasn't as much a rebirth for Sky as it was for Ren and I, because for the first time ever, we could understand why he did the things he did, and we could become much better parents for him. We feel so incredibly blessed by this life we have and especially that this diagnosis has helped us help him.
I started blogging not long after his diagnosis because I was looking for a community of parents who had been through this. Autism can be lonely because there is so much misinformation and missing information, and there really is no handbook for how to get your kid all the things he/she needs. In other words, I started blogging for myself. But then a funny thing happened. Sky took interest in my blog. He wanted to hear the stories I was telling. Then he wanted to tell his own. If you have a chance to look through the archives, you will see him desperately trying to help others understand what it's like to have autism. (The posts under the label "Illustration by Sky" touch on this topic the most).
As many of you know, over the summer, we had to move. We moved away from the occupational and speech therapists who'd worked with Sky for more than two years. We moved away from the small school full of friends who've known him since the first days of his diagnosis and who came to accept him just as he is. And we moved when he was in third grade, just when kids seem to be more aware of the social nuances of life and a lot less forgiving of difference.
The move has been hard for me because I completely lost my network of support and have struggled to locate therapists who can help the way the ones we had before did. But, the move has been harder for Sky. He's not like everyone else. He makes a lot of noises, asks weird questions, misreads social cues, and consistently invades peoples' personal space. Not the best traits for helping the new kid fit in, and he's feeling his "difference" like never before. Every day, he says to me, "Mom, it seems like the kids don't understand what it's like to have autism" or "Mom, I miss my old friends because they 'got' me" or "Don't they know how hard I'm trying?" Last week he told me that he's always picked last for gym (everyone's worst nightmare) and that "it's hard to be friends" with the little girl who lives across the street and who happens to be in his class because "every time I try to talk to her, she walks away." My heart is breaking for him, but more than that, I worry because he is getting discouraged, and he no longer feels confident enough to advocate for himself. He's a smart, kind, and funny kid, but he's losing his voice.
So, my wish is this. I wish you, my readers (and your friends and neighbors, and heck, even complete strangers), would love bomb Sky by reading his old posts (click on the label below) and offering him encouraging feedback. By telling him what he helped you understand about autism, and by encouraging him to write more. Let's help him rediscover his voice and to keep telling his story.