family,  siblings and autism

W’s turn

img_7215
Gorgeous butterfly at W’s church camp this week.

Most of the time my life is consumed with J. I go to bed thinking about J. I wake up thinking about J. In the throws of summer most daytime hours are spent with J. J and I  get up and run, we work on math, we work on reading. We talk about managing anxiety outside of meltdowns, I coach him through the anxiety meltdowns as they happen. I’m his one-on-one tutor, psychologist, and coach.  Almost every waking minute.

All while W floats in the periphery, taking care of herself, spending time reading in her room or outside with the neighbor kids. Sometimes she’s tinkering with Legos, sometimes she writes stories.

Since she is so independent, I often just forge ahead with J. Occasionally I’ll pop my head in to see what she’s up to just so I feel like I’m not totally ignoring her altogether. It’s mom guilt I constantly struggle with–not just the fact that I spend so much time with her brother, but in some ways, even with the mysteries of autism, I feel like I know J a million times better than I know my W.

I’m not sure how to fix it. I’m not sure if it will ever go away.

These last few weeks it’s finally been W’s turn, and in these few weeks I feel like I’m watching my daughter grow up right in the moment. I’m seeing her vulnerabilities, I’m watching her gain confidence, and I’m starting to understand her personality a little better.

W will be running girls XC team this fall, and so we all (J, W, and me) have been attending summer running practice together. Not together together. During the summer the boys and girls meet and start as a large group, so while W stood timidly (at first) with the older middle school girls and high school girls, I stood with the older middle school and high school boys and then we all run off. J and I are together, and W is off on her own with her girls.

On one of the first days of summer running the girls’ coach asked Whitney if she was the younger sister of another girl on the team. W replied quietly, “No, but I’m the younger brother of J.” It’s something she fesses up to but doesn’t usually want to go into much more detail in public. The coach made the connection right away–that all 3 of us were family–and also read W’s cue of uncertainty. She didn’t want everyone to know that connection. She wanted to be known as just W.

That’s when I realized the one of the little changes in W lately. That identity establishment. Not only does W have to navigate the tween/teen transition that includes so much hazardous territory such as body image, popularity, and self esteem. She also has to navigate her identity with autism–because it’s part of her identity too by default. In some moments she wants to claim it. In other moments she doesn’t. Some days she wants to stand by J. Other days she pretends he doesn’t even exist. It’s as if she’s trying to figure out where she really fits and how much of that autism responsibility she wants to carry in middle school.

img_7209
Me and W at camp!

Social dynamics have always been hard for W to navigate–but almost in the exact opposite way of J. J is totally oblivious to social nuance. W is acutely aware of social nuance. In some ways, her struggles are just as hard as J’s. Because she lives with autism, some of the “drama” at school looks, well, really pathetic to her. Clothing choices and faux pas and “who is or is not dating/hating/talking to whom” are just not the same caliber of crisis as watching your 13 year old brother have a meltdown because an Adele popped on the radio. In some ways she can “adult” better than most “adults.” But the heartbreaking part is watching her still cling onto her childhood, because, in a lot of ways, autism has made her grow up pretty fast.

But with her summer activities these past few weeks, I’ve seen her start to own these situations a little more. W has come home from XC practice really excited about meeting and getting to know the girls on the team better (a couple of weeks ago the girls XC team did a lot of “team building” activities). I’ve seen her a little more confident at home. She’s talking more about her struggles to fit in socially to us (her dilemma about Instagram, for instance. She doesn’t want an account of her own but feels like she has no clue what’s going on with other people because a lot of the traditional “socializing” my generation did in person, her generation does electronically). She’s also talking more about her successful social interactions as well–the new friends she’s making.

IMG_7195Not only through XC have I seen W come out of her shell, but with her church camp last week she’s grown a ton too. I was asked to volunteer and help out the first two days of camp, but for the rest of the week W was at Richmond Lake in South Dakota with 100 or so other girls all by herself. For the most part, when I was there, W wanted to do her own thing (although every once in a while she came to find me just to chat and say hi for a little bit). It was strange to have our baby away from home for a week. It was a strange dynamic in our house with just me, Steve, and J. Even though W is so independent and self-occupied at home, I felt like a big hole was missing in our home. We’re a little team of four people.

W came back from camp on Saturday with big hugs for all of us. When I asked her how it went, she said that, “It was good. I thought I always wanted a sister, but after camp, I realized that I didn’t want one after all. It was all girls all the time. I never had any time to myself, and I really like that. And I missed J.”

Maybe I’m allowed to feel a little less mom guilt after all.

Please follow and like us:

2 Comments