Posted on Facebook this morning…
Thankfully this “costume” would not interest either of my children, though Charlie Sheen does hold a certain appeal for my son, just not in the buff. The costume(s) Emma picked out, ostensibly for Halloween, but will be worn, undoubtedly, on an almost daily basis for the next few years, are due to arrive any day now. She chose a pink mermaid outfit, complete with magenta feather boa and yes, the tail is covered in sequins. As a backup she opted for a “Renaissance Princess” costume with faux fur and a veil. It’s all very King Arthur meets Lady Macbeth-ish. She whipped right past the costumes for ghouls, ghosts, goblins, zombies and various farm animals. She hovered over a “Rainbow Witch” costume, but ultimately passed it by, pointing instead to the hot pink butterfly, the “ice Princess” and a costume I couldn’t figure out what exactly it was supposed to be, but looked like a giant multi-colored lollipop with wings or maybe it was a G-rated version of Lady Gaga, it’s hard to say. I’m grateful Madonna has yet to come onto Emma’s radar, though it could be argued Lady Gaga, one of Emma’s favorite singers, is not so different. Both appear to favor the cones used as warnings on construction sites for breasts, still trying to work that one out…
Looking back to other generations, it does seem Emma’s love of costumes was shared by several of her ancestors. Both my grandparents, her great grandparents held “costume” parties. There are boxes filled with photographs of my grandparents, particularly my grandmother, wearing some pretty outlandish outfits. My mother has two racks of “costumes” occupying a corner of her project room in her house. I have in my possession a hilarious photo of my mother dressed as Tweety Bird, but haven’t asked her permission to post it or I would. Evidently a love of drama and dress up runs deep in my family, one might even say it’s genetic.
Emma doesn’t care about the candy, she has no interest in going up to people and saying “trick or treat”; for Emma it’s all about the costume. Unlike her brother who sees the costume as a necessary annoyance to getting sugary morsels, sort of like the jacket and tie required at certain restaurants. I have to say, I’m with Emma on this one, other than an inexplicable craving for that truly dreadful candy corn, (what do they put in that stuff?) the idea of wandering around strong arming people into giving me treats doesn’t hold much interest. However it’s right up Nic’s alley. Each Halloween we debate which weapon in his arsenal he will brandish. Usually he chooses several and with the inevitable face paint he demands, resembles something out of a spread in National Geographic featuring child soldiers in some war-torn country. (Yeah, I did just write that. Moving right along) Nic finds Emma’s lack of candy enthusiasm absolutely baffling. And while Emma doesn’t voice her astonishment at her brother’s disinterest in all things costume, I have to wonder that she doesn’t think it… odd.
It began young…
I love it!!!! Halloween is one of my most favorites times of the year. I would totally love to go to a big theater and have hours with the costumes and make-up! Would be a blast! I think it is awesome Emma and Erin is the same way! She is going as Elmo. Brett on the other hand doesn’t appreciate anything on his face or head really so I am still stumped! We will figure something out!!! Have fun!!!
Sounds great. And you will be dressed as….? I will be consulting Emma for guidance on what I will be this year!
:O) No clue! Our usually Halloween dance we always attend is not happening this year so I am really bummed! Probably wear my pumpkin shirt! :O) My really good mask is a bit too scarey yet for the kids! :O)
Loving all the vintage Halloween pics, lol! I really wish Marisa understood the concept of dressing up. She does, however, enjoy the candy! 😉
I was wondering – I’ve heard you mention Joe, Emma’s therapist, many times. What exactly does he do with her? I’m getting ready to fill out some paperwork from the state, to see what other services Risa might qualify for that she’s not currently getting. One of them could possibly be some sort of in home help. But I was thinking more along the lines of physical care – someone to help bathe her, etc, when it gets too much for me. But obviously, she could use any other sort of ST, OT, or whatever else “in house” therapy the state might provide.
I’m currently in a conundrum about hygiene. Sooner or later, I’ll need to do something about the hair on her legs – I obviously can’t take a razor to them, and with her eczema, hair removal cream is out. Any suggestions? (Sorry if this ventures into puberty territory – you don’t have to answer if you don’t want too!)
Joe is Emma’s DIR/floortime therapist. He also works with her on math, reading and writing. Joe developed a math program specifically for Emma and it’s working very well.
As far as hygiene issues.. Hair isn’t really a hygiene issue per se, and it’s also very much a NT construct (and an American one at that). My personal feeling is to leave my daughter’s body alone. But this is where I really rely on my female Autistic friends, because I wouldn’t feel comfortable making these decisions for my daughter. I need help with this kind of stuff.
Any female Autistics care to share their views on this?
I’m uncertain what to do at this point. My instincts tell me to leave it alone – but I’d appreciate another female’s perspective!
I would so love it if Risa could have a therapist to work with at home, one on one. You guys are lucky to have Joe, he sounds quite amazing!
Okay, Angie, just heard back from one friend (by the way, if you don’t know of Karla’s ASD Page on Facebook, you should go visit it. Just a gold mine of great information) Here’s what Karla said:
“It is only in the US that every day bath and hair removal is so damned important. In other countries girls have hair and it is okay. In other countries rules for bathing = when you stink. I live by those rules and it works just fine for me.”
As a side note my father was Swiss, born and raised in Paris, he took a dim view of the very American need for daily baths and showers and felt California’s water crisis would have certainly been alleviated had everyone been more like him (he may have been right!)
Yeah, hair removal creams will make the eczema worse, in addition to smelling painfully bad. It’s not like having natural legs is going to mess her up. My life is awesome and I have the legs I came with.
Another comment from another female friend of mine –
“Autistic girls are no different than other girls. Some love being girly girls, and others don’t. If a girl has always shown an interest in being pretty, dressing up, etc, then that could be continued in an age appropriate way, much to the girl’s delight, and would add to her confidence and self esteem. If a girl has never shown a bit of interest, there is no reason for her to be anything other than she is, for forcing artificial standards of beauty would only make her uncomfortable, and have the opposite effect on her self esteem. There is also the needs of the caregiver to consider. Beauty culture takes a certain commitment in time and expense, and, like anything else in relationships, agreement and compromise must be uniquely met for both. And then there is the sensory challenges of grooming to consider. I cannot stand getting my hair cut, so I wear it long, and whack it off a bit now and then.
I do not know this girl, or her mother. Does the child care?”
Love the costumes! Am not a female so will pass on the hygiene matters . . . Drat, I forgot to shave again today!
And with all that fur, it’s gotta get hot..
Coyotetooth, you are a tooth. Why do you have to shave your enameled visage?
You know that feeling when you haven’t brushed your teeth in a REALLY long time? That feeling like your teeth are getting fuzzy (not that I would know about any of this, these are things that have been told to me..) I’m pretty sure that’s what he’s talking about. Though how he’s able to type is curious. Do you think he just hops around on the keyboard? A lone tooth?
I see you got right to the root of the problem! This ‘yote is not known as a healthy eater . . . So the tooth needs a good scraping!
I’m Emma’s Halloween opposite. Loved the candy, apathetic towards wearing a costume. I also loved being able to go around the neighborhood after dark, and being able to participate in an activity where I felt like a regular kid. In recent years I’ve told people I’m dressed up as a lazy costumeless person.
Last year my then-boyfriend (also autistic) went as a girl and I went as “a lesbian” (“her” girlfriend). I told him he had to shave his legs to make the costume more authentic, even though I personally cannot be bothered to do that myself, and just wear pants all the time. So he had to borrow my roommate’s razor (he tried using his own razor at first, and then I told him men and women have different kinds of razors because we shave different parts of our bodies).
Hi Laura! So wonderful to meet you at the Autcom Conference!! That’s very funny about you and your then boyfriend. What a great costume idea, hilarious!
I had to come back and share this with you. I read this post the other day. At dinner that night, I was telling my Mother the story of Emma and how she loved the costume part of Halloween, as well as what I took from the story, which is that we all celebrate in our own ways. I wasn’t really tuned into my own boys at the time, you know, probably my first adult conversation for the day and all. Anyway, they were listening, of course, and Max piped up with a ton of follow up questions about Emma. He was completely interested in her costume, which has been a challenge for both of my boys on Halloween each year due to sensory issues. I gave him all the sparkley details! It was a great way for us to talk about costumes and different kids who like different things about the holidays. Mine both happen to LOVE the repetition of knocking on doors! They have a door thing…
And in addition to all that, on one of your more recent posts, where you reflected on your choices of anonymity, I wanted you to know that I am also wondering about my own choices in that area lately. I might have given up too much myself, I don’t know…BUT I feel thankful to know you, and your family, (I love your husbands responses to these posts as well!) and it feels more real, and connected some how. Like my family can sit down and discuss our friends’ lives and celebrate with them over dinner, even though we are so far away in other ways. I am being more thoughtful about what I share, and at the same time, I know, living in the open is a powerful rejection of shame and one way that we can all really find understanding.
So, I wish you all a very happy Halloween! 🙂
Oh I love hearing this! Thank you so much and telling me. How great!
Yes, the anonymity piece is tricky, I don’t know that I’ll ever figure it out completely… I read something someone wrote on their blog, it was incredibly personal and powerful and I thought about how so much of the power came from their ability to be so completely vulnerable and how, often those are my favorite posts, the ones that are just beautifully raw, and it feels like such a kind and generous gift.