Friday, July 12, 2013

He bit. I cried.

I'm wallowing in sadness today. It's a pity party all my own, with a little glass of wine and self-indulgent moping with lots of sighing. I feel bad on so many levels.

We went to our church's family camp this week. And let me say first off that most of it was wonderful. We had moments to really connect with other people, to refresh old friendships and make new ones. I got to go to the "adults'" program, which fed part of me that's been pretty neglected lately. People were amazingly supportive of us and of Soren, asking how to help, including us whenever they could, asking about us and our journey and excusing our not-so-quiet early exits from most events.

And Soren did great in so many ways: he got used to eating in a huge dining room filled with chaos and noise (okay, he ate mostly grated cheese and saltines, but whatever, he ATE!); he adapted really well to the babysitter we had arranged for the mornings; he loved swimming with his daddy in the lagoon.

But on Wednesday evening, he bit another little boy--hard. And then I cried. A lot.

I cried out of embarrassment and empathy for that little boy and his momma. For a little guy who was bitten for no reason that he could fathom and for the momma that had to explain autism to a six-year-old. For knowing how it feels when our children are hurt by others.

I cried out of mortification that we made a scene. Ending a lovely conversation with other adults mid-sentence to deal with the chaos. Soren and I both crying as I shooed him into our cramped little room that all three of us shared and sat bewildered on the sagging bed.

I cried that the week had been hard. It was hard for Soren to sleep and eat and keep himself busy. It was hard for us to manage night waking while worrying about waking up everyone else (Soren is still doing night waking for one to two hours at a time, usually accompanied by happy and LOUD jumping). It was hard to not have adult time with Erik or other church friends because one of us is always on and following Soren around, especially mid-meal. I was resentful that we took time out of adult sessions to check a six-year-old's diaper.

I cried out of jealousy of all the other parents who gloried in the fact that this was such a safe place for their kids to run around without parental supervision. That that will never be our experience.

I cried out of isolation. That we needed to provide so much alone time for our kid that we were really hiding in our room much of the time. That I couldn't have deep conversations with others that lasted longer than Soren could finish his saltines. That so much of my identity and daily occupation is caring for my son and how limiting and boring that feels some of the time.

And then. And then I cried with crushing guilt because I was raging about all of this to Erik in front of my son. He may or may not have understood me. But I know in my tantrum I said phrases like "why is this so hard" and "I'm just exhausted" and "I'm so embarrassed." And my child should not hear that from his mom.

And finally, I cried out of shame for leaving camp early, avoiding talking to others about why we were leaving. I felt like leaving was a failure on my part--of planning, of emotion, of not reading my kid's overstimulation, of not having enough energy. Of expecting so much. Of quitting.

I've taken a day to process all of this, and I think I have a bit more distance and peace about the past week. I'm tempted to tie it all up with a nice bow and declare something like "we did our best" or "lessons learned"--something that will feel resolved for me and you. But the truth is I'm really sad, and right now, I'm going to leave it at that.

Friday, July 5, 2013

Birthday Number 6

Happy birthday to the boy who changed everything. I adore you.

Tuesday, July 2, 2013

New blog Facebook page

Just a quick note to say that this blog has its very own Facebook page, here. I thought it would be a good place to post blog updates and more musings about parenthood, special needs, and the like. I'd love your Likes and comments!

Monday, July 1, 2013

Music therapy camp and Seattle Center

Last week Soren went to a five-day music therapy camp at the EMP museum here in Seattle. What a lucky duck to be able to have such wonderful guidance with music (with our beloved Lindsay as his 1:1 aide/intern) in that fabulous space. I spent the first day shadowing Soren because he was anxious, and it was great to see how music fostered his focus and awareness and encouraged him to participate with group activities. He perked right up when a song had his name in it, and he really got into banging on drums at certain points in songs (and he hasn't been interested in drums before). And you should have seen him stare intently at the music therapist playing a guitar (natural eye contact!) and later actually initiate strumming the guitar himself.

Because the camp was only two hours each day, I didn't have time to go home or do errands while I waited for Soren, so I stayed around Seattle Center the whole time. It was a treat to have coffee in the Armory and explore the grounds before all the tourists woke up. Friday my parents joined me on a quick tour of the Chihuly Garden and Glass museum on what turned out to be a perfect Seattle summer day.

I couldn't resist this little sign.


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