Oh no, I've said too much
I haven't said enough
I have tried, not always successfully, to highlight on this blog the aspects of having an autistic child that do not suck. (Yes, I said "autistic child" instead of child with autism. I may break all sorts of rules today.) I do so because it doesn't take much imagination to imagine the ways in which it does suck, and I feel some responsibility to be in the "Behold, I bring you tiding of great joy! It does not suck," category of mothers. But inasmuch as this blog is for me as much as it is for you, we're taking a trip to the dark side today. Today I really need all of you to send me warm fuzzies, prayers, Aqua Velva slaps, candle-lighting ceremonies, sacrifices of goats, and all other things you send people from afar so that they know you are thinking of them.
Here are some ways it sucks that you may not have thought about:
1. It sucks when you're having a happy day with your family, autistic child included, and some well-intentioned friend or relative asks you, "Have you thought about how you'll handle <insert future inevitability here>?" The answer I usually give is that I live my life with general forward motion through my ability NOT to think about the future. I quote Cyrus the Virus from Con-air: I never think that far ahead.
2. It sucks when you are having a bad day and someone tries to bring you into the lighter side by saying that your autistic child is loving, or adorable, or happy, or anything that doesn't have all that much to do with the future we don't talk about. Make me laugh by calling me and saying, "You just had to call Mom crying, didn't you? You couldn't just suck it up. Now she's back on that cross and I swear there's actual stigmata this time. We're calling in a Cardinal to verify."
3. It sucks when your teacher's child describes you, to your face, as the sort of parent who "needs a lot of hand-holding." Note to self: change, and become the sort of parent who berates teachers and administration for not "forcing" child to learn to speak/self-toilet/stop pulling hair. Yelling instead of crying: I can do that!
4. It sucks when you take your autistic daughter to her well-child appointment and you and the doctor have a discussion about whether or not its better for your child to reach menarche before beginning depo provera. This conversation hits you hard, the same way it hit you when you first got the diagnosis. Except then you could take things a lot more one day at a time. Now? The future, that future is now.
5. It sucks when you are Jewish, or kind of Jewish, and your autistic child turns thirteen. She is thirteen and she is changed in body only. You were never planning a Bat Mitzvah because you're only Jew-lite, or Jewish when there are latkes around, but it's there in your soul, in your DNA (and hers), and there's enough of it that Hitler would have given you both a free train ride to Poland.
As surely as Rosh Hashana feels like the New Year whether you celebrate it or not, thirteen will never be just another number to you.
Because your child goes to a Jewish School and you live in a Jewish neighborhood and you have lots of Jewish Facebook friends, you see a lot of Bat Mitzvah announcements and suddenly, now that your child is thirteen, they make you cry. You are happy for those young ladies and their parents have every right to be proud. Just ...please ignore the crying voyeur in the corner.
That's me in the corner.