I blog about my daughter with autism, about her life, about her art, about funny stuff she does, about good times and bad.
I thought I might start sharing some of my entries here, as an effort to raise autism awareness. Often diaries on this site about autism seem to center around vaccine issues, which is a shame, if you ask me.
This latest entry is about some of the expenses that are not talked about in relation to autism. It's not all about treatment and therapy. There are all kinds of extraneous costs that really add up over time. I don't expect any insurance company to reimburse us for these costs any time soon.
Visit her website to read more about Ellie, autism, or to see some of her artwork.
www.elliecastellanos.com
One of our greatest expenses related to Ellie is not therapy, or treatment, or doctor's visits.
It's beds. Well, beds and mattresses.
We started off with a regular twin, normal for most small girls. It was a nice twin bed, a cute brushed metal frame with an antique white finish. Problem was, the covers kept falling off because Ellie is a thrasher at night. You should see her hair when she gets up in the morning--it looks like someone attached a bird's nest to the back of her head. It's super fun to brush.
You might think that covers coming off in the middle of the night isn't a Red Alert situation, but you'd be wrong. Because if the covers come off Ellie at night, then Ellie gets cold, or she misses the weight of the covers on her while she sleeps, or both. The bottom line is, if the covers come off Ellie in the middle of the night, then Ellie wakes up. And if Ellie wakes up, Ellie is up for the rest of the night. And if Ellie is up, Mama is up, because Papa has to bring home the bacon, so he needs his beauty sleep. If Mama doesn't get up with Ellie, sometimes funny things happen, like floods, or the house filling with gas from the stove. Ha-ha! That's funny stuff!
If Mama is up all night, she looks and acts the next day like a creature from a horror movie--her eyes get all twirly and tentacles come out of her ears and she grows sharp teeth and claws. She growls and huffs and puffs.
So nobody in the house was happy with Ellie on a twin mattress. Ellie got a queen size bed, and everybody was a little happier in the Castellanos house. But some dummy forgot to get a protective cover for the queen size mattress, and guess what? Sometimes Ellie would get horrible diarrhea in the middle of the night, no one knows why. So Ellie needed a new queen mattress for her new queen size bed. And a protective cover.
Of course this mattress was too hard, and our little Goldilocks felt she needed a softer place to lie her head. Back to the store for a memory foam topper, and the bed was just right. It was all good for a while.
In the past few months it's been all we could do to get Ellie to sleep in her own room. Any bed but hers was the bed she wanted to sleep in. She wouldn't play in her room either, and in the dead of winter it gets a little brisk in the basement play room. So she kind of took over Lilia's room, which made Lilia very sad and complain-y. I also noticed that Ellie's favorite place to play was on top of Lilia's tall, tall bureau. She would take the mattress off of Lilia's bed and put it on its end, balanced against the bureau, and she would play up there. I guess it was like a little treehouse for her, but I would have to reassemble the bedroom every day in order to keep Lilia's head from exploding.
This takes us to our latest in Ellie's Bed Adventures. A loft bed for Ellie. I, of course, searched for the modest loft bed that would satisfy our needs and not break our bank account wide open, but Alex decided Ellie needed the super-awesome-deluxe model of loft bed, which was delivered in 800 pieces a few days ago and is waiting for Alex to come home from his business trip and assemble.
And of course there was the requisite, "Why does Ellie get everything?! I want a loft bed, too!" so a trip was made to Ikea to trick out Lilia's room so she wouldn't feel more neglected then the already does. They sell the coolest wall lamps that look like flowers! New curtains, and one of those princess/mosquito net things for her bed and Lilia was satisfied, poor lamb.
Stay tuned for updates as to whether this loft bed makes Ellie like her room more and keeps her from dismantling Lilia's room every day.
These are the un-talked about costs of raising a child with autism. The price you pay for sanity and a modicum of peace. It's expensive.