It may or may not have been a month since I’ve posted (hint: it has)! *insert eye covering monkey emoji here*
Sorry, friends. But I’ve been so discouraged lately, which means I haven’t really wanted to write.
There is good and bad to report, however, so I’ll start with the bad news, and end with the good. It’s always best to end on a high note, right?
So, we’ve started the autism therapy…we’re a week and a half in. And I could not have prepared myself for how difficult it has been. Is it worth it? They say it will be, but more on that in a minute.
The sessions are set up in a 45-15-45-15 way…45 minutes of therapy, 15 minute break, repeat. Technically I’m not supposed to be in the room during therapy, but since S is very stranger-danger right now, I’m allowed to be there. But, part of me being in there means that I’m pretty much there in presence only…so during the 45 minutes of therapy, I’m not supposed to talk to or interact with Scarlett in any way. Doesn’t sound too hard, right? Well, it’s mostly not, until S has a meltdown, and then it’s game over for me.
I would like to preface this by saying that my daughter is not really prone to meltdowns. They don’t really happen all that often…mostly if someone takes her toy, or tells her no. She’ll cry, flop around, try and bang her head into things…the usual. I typically pick her up, give her some deep pressure, snuggle her, tell her she’ll live, and she’s good to go. Start to finish is usually well under two minutes.
I told the coordinator and the supervisor well before S started therapy that she has MANY sensory integration problems…she doesn’t like loud sounds, is scared of new people, doesn’t want to be touched, etc., etc. I assumed that because these people are working with autistic children (who frequently have sensory issues) day in and day out, they’d be used to it and wouldn’t come in and do everything I specifically said not to. BIG FAT NOPE.
They are nice people. They are lovely people (from what I can tell). But out of 5 sessions so far, most have had some kind of meltdown, and two have had big ones (10-20 minutes in length).
THAT. NEVER. HAPPENS.
The supervisor was here yesterday and said that children often do it for attention, and that is not my girl. I told her that, and told her why I thought she was melting down (aka why she is…I worded it in an, “I think this is why” way, but I know my girl). Once, the therapist sat very close to her and tried to engage S in a loud (but nice) way, and today, the therapist tried to do hand over hand to get S to stack rings.
The girl cried like I have never seen her cry before. It was awful. It was heartbreaking. And I had to sit there and do nothing as she crawled into my lap screaming, flopped her body around, pushed her head and body into mine looking for pressure, and wrapped her arms around my neck looking for comfort.
Simply put, it breaks my heart.
It is heartbreaking to not be able to comfort your child when they’re desperately seeking it. It is heartbreaking to watch your child struggle. It is heartbreaking to watch your child hurt. It is heartbreaking to know what will calm your child and be unable to provide it. There is nothing about it that isn’t heartbreaking.
The frustrating thing about it is that it is something that shouldn’t be a big deal. Hand over hand to stack a ring should not be something that causes the world’s most epic 20-minute meltdown (he timed it…I’m not exaggerating when I say 20 minutes). It shouldn’t terrify my child to that extent when someone touches her. But it does, and I still don’t know how to deal with that.
Someone said, well, she just needs to get used to it. It’s a learned behavior. Okay, but it scares her. You can hear in the way that she screams that she’s terrified. So whether or not her fear is justified in my eyes, it is for her. I’d imagine it’s the same with a schizophrenic. You don’t tell a schizophrenic person that the voices that they’re hearing aren’t real, because to them, they are. I can sit and tell Scarlett all day long that she’ll be okay, but she is still scared, and I’m supposed to sit there and do nothing about it.
They said last week, “well it’s for her own good”. Yes, well that’s what they would tell patients undergoing shock therapy, and most of the time, it didn’t turn out so well for those folks. And that’s what I feel like I’m watching– I feel like I’m watching them put her through shock therapy. It’s horrifying. It’s heartbreaking. And I hope it gets better, because I don’t know that my heart could take it if this continues happening day after day, week after week.
To come full circle, when the therapy is going well, it goes well. I know that she’ll benefit. It’s obvious that what they’re doing is truly for her own good, and that it will help in the long run.
For that, I am thankful. I am thankful that she is in therapy, and that she continues to improve. She has made so many leaps lately, it’s mind-blowing. She is drinking water like a champ. She sits in her high chair at mealtime and will self-feed (most of the time). She’s interested in using a utensil. She finally sat in the bath, and now LOVES them. She babbles all the time. There are so many things that I have to be thankful for, but for now, it’s just a little hard to see the forest through the trees.