I had a crappy day yesterday. While I’m VERY happy with how I’m doing at school and with clients, I’m not that thrilled with how I’ve been managing sleeping. As in not getting any.
That’s mainly due to the kid waking up at night, and running around laughing and playing and trying to make everyone else get up. I try to describe this to people who don’t have kids with autism…yeah. It’s just something that people should be thankful they don’t have to experience. I, for one, am tired of someone (who’s now bigger than me) waking me up and hugging or squeezing me for sensory input, for lying down for 6 minutes only to have to get up again for another 10 minutes to make sure someone’s not in the pantry, climbing on tables, getting into electronics, etc. All. Night. Long.
Parents of infants experience this, as did I. Except this is my fifteenth year of it. And we have done MRIs, natural sleep aids, non natural ones, consequences, routines, and so on. So, yeah.
Anyway after I scratched a car (oops) while parking yesterday I decided I really need more sleep. But even that take a plan: I had to call my ex-husband, his wife, Aidan’s home BCBA, and so on, just to create a plan for him to go to his dad’s one extra night. I have to make videos of myself telling or showing Aidan what to do. I have to have one list for the attendant, make sure his dad has the latest version of the routine, make sure the trainers have trained him on it so it goes smoothly because anyone deviating from it makes a meltdown occur. Exhausting.
I decided to call mothers of older kid like mine. My longtime friend who has a kiddo with autism said when I called her she’d actually been upset about her own son. I nonchalantly said “I cry about my boy every other day or so, when I’m planning stuff out for his future, when I see some little kid doing things he can’t, when I can’t take the constant touching anymore.” She was really surprised, thinking I never got upset and was “over” being upset. What!
This is a message for other sleep deprived moms out there: we all cry. It’s ok. We are all worried about special ed programs and trainers and trusts and custody plans for our AU kid if we are divorced and insurance and so on. We all cry and then move on and do what has to be done. No, other people do not understand: like a classmate telling me the other day their “theory” of autism was “trauma to the parent or to the child” (STFU.) Or another person telling me “Oh all kids hate texting their parents” when I tried to explain how we are breaking down the abstractness (is that a word) of phoning and texting to a very visual kid. And so on. They don’t have our lives, that’s all.
And we all can say no. I do it EVERY day: No, I don’t want to be around a toddler today who can have more of a conversation with me than my teen, (and that’s not because he’s a teen and doesn’t want to talk to me, it’s because he never has had a full in depth convo with me). No, I don’t care to hear about my kid’s stepsister who’s doing all these things to help him, because it makes me sad that a 7 year old can understand some things that he can’t. And I can’t spend my days with my energy being drained by parents (who are not my clients) who are looking for all the answers because they want “recovery” now now NOW.
I might be able tomorrow but not today. And that’s totally okay.