But Mini doesn't understand birthdays. Every year we teach him how old he is and we teach him how old he'll be on his next birthday. Sometimes he fusses about aging another year "NO, I don't WANT to be six! I want to be FIVE!" because he is, by nature of his disorder, change averse. His dad and I, along with his therapists and our family, prep him for his birthday by getting him excited to eat cake and potentially getting new toys and, of course, getting to sleep in the camper which he loves.
The day before his birthday, I cried every time I thought about it. A friend of mine asked why I was crying and I said "I think I'm scared." It makes my heart crumble- thinking about how birthdays stress Mini out already- at age 5. It makes my heart crumble when I think he doesn't even understand what "birthday" means, or that once you've been 5 for a year, you become 6 and then 7 and then 10 and 17 and 24. I'm scared of another year older already, even at age 5, because it's another year of missed developmental milestones, of words he should be saying, or feelings he should be able to communicate, of conversations he should be having. It's another 12 months of catch up that needs to be accomplished in 6 months... someday- who knows when.
It's another year of Autism.
It's another year of wishing he could understand THIS:
But instead, singing happy birthday while he turns away from us and won't blow out his candles, and instead doing this:
We had just returned from a vacation the week before, so as it turns out, the four-day camping trip was too much. He had a tough weekend- behaviorally and emotionally. He can't tell us how he's feeling so we just try to suggest ways to make him happy or try things to make him feel safe but, unfortunately, we mostly failed him in Davis. He didn't want us singing happy birthday. He hardly ate. He ran away from me constantly at the fourth of July parade. I took him back to the campground before the fireworks even began because he was so visibly anxious about them. It was exhausting and tearful, and I couldn't wait to get home. Neither could Mini.
If I could rub the genie bottle and get one wish, it would be to open up his head and look inside. It is devastating to me to have a six year old little boy whom I mostly feel like I don't even know. It makes my skin sting and my soul break open with sadness when I think how hard it must be for him to not be understood, to not be known. There are times when we "get" him, when we do the right thing and he is happy and well adjusted, but when he's down and out and I can't help him, I feel like I'm just going to stop breathing. I can't help him. I can't fix this. I can't make him feel safe. All the things in my job description as "mom," I can't do. There is not a word in our language that properly communicates how deeply I ache to know Mini. If no one else ever knows him, if no one else gets him, his family should be the place he doesn't have to try to explain. The fact that I can't be that kind of home to him is like nails running down a chalkboard in my head, ever minute, every day.
Yes there are tons of happier topics, tons of accomplishments and tons of wonderful days. The week before his birthday, we had an absolutely amazing vacation, which he loved for all of the seven days we spent traveling around. But for now, I'm stewing over the next year, trying to figure out how we can get to age 7 knowing more than we do at age 6. Trying to cram 18 months into the next 12. Trying to open up a beautiful brain to peer inside and expose all knowledge and inspiration he has for the world.
That's what birthdays mean to me.
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