Sunday, March 13, 2016

Dropping All the Balls

I'm not sure how to break this to you, so I think I'll let this slightly modified transcript of an IM exchange I had with a friend tell my story for me:

ME: At this point, I feel like I'm dropping balls all over the place. I didn't get nearly as much done during break as I wanted. Plus, we almost killed Pink with peanuts. 
(She's fine). 
FRIEND: Oh geez! Peanuts that is. Plenty of time for the other stuff. What happened? 
ME: I preface by saying that Pink ALWAYS complains about dinner and almost always says stuff she doesn't like makes her feel funny. Add to that the fact that Ren has just recently started cooking again, so she's getting a lot of healthy food she doesn't like. And, she never hesitates to tell Ren she doesn't like his cooking. THIS is an ongoing battle with Pink. 
Yesterday, Ren put zucchini in the curry. She said it made her feel funny and refused to eat it. Happens All. The. Time. 
Then she said it stung her throat. Something about the way she described it made me check the ingredients list on the box. The curry we always use seems to have a new formula that now includes PEANUT BUTTER!!! 
For the love of God. Because now Ren's upset because Pink's constant complaining is impossible to read, and he's terrified that he's just done something that hurt her. 
And, we don't know whether to use the epipen or not because she's not really showing any signs of reaction, and she says she's feeling much better now that she knows she doesn't have to eat the zucchini. So, I give her Benadryl, grab her epipen, and put her in the car to go to the immediate care clinic (EDITOR'S NOTE: The immediate care clinic is 5-minutes away and is an ER-level walk-in clinic that is 20 minutes closer to our house than the nearest ER. Calling an ambulance would have taken A LOT longer). 
At the clinic, the nurse said Pink didn't look like she was having an allergic reaction but that I should keep an eye on her through the night because everyone metabolizes differently. So, I slept with her all night to make sure she was ok. 
She was. 
I hate food allergies. 
FRIEND: Geez. Maybe just use curry powder from now on. Holy hell.

*****

Yeah, so, apparently Ren and I inadvertently gave Pink peanut butter just TWO days after our annual visit to the allergist who said we should be especially careful about her peanut allergy since her test results indicate a very severe allergy (despite the fact we've never seen a severe reaction--THANK GOODNESS). My friend was kind enough to say that we shouldn't be too hard on ourselves, but I have struggle with that. I don't think we could've forgiven ourselves if failure to double-check ingredients had caused Pink a serious reaction. It never even occurred to me that something we always eat could suddenly become dangerous.

We still don't really know whether she had a reaction to the curry or not, but we are sure we need to work even harder to help Pink see the importance of not being so hyperbolic. I mean, when a kid has asthma and severe food allergies, we need tom help her figure out other ways to talk about things she doesn't like without saying they make her feel funny. Yesterday, as soon as I told her she didn't have to eat dinner, Pink said she felt all better, even though I hadn't given her the Benadryl, yet. But, when I pressed her, she also said her throat felt like a combination of itchy and bruised (which sounds a lot like an allergic reaction to me). 

So, yeah, I feel like I learned nothing from this day in the life of a kid with food allergies. I mean, I don't know whether Pink ingested peanut butter or not. I don't know whether she had a reaction. I don't know whether I should've used the epi-pen "just to be safe," and I don't quite know how to interpret her hypochondriacal responses to foods she thinks she might not like. 

I do know, however, that I will be reading ingredient lists every dang time from now on.

Wednesday, March 9, 2016

Squeeze On

When we moved three years ago, Ren and I decided to get rid of the ratty, old couch that we'd been moving back and forth from rentals to storage sheds as we relocated here, there, and everywhere during the final years of grad school. It was uncomfortable, the edges were frayed, the cushions were torn, and it had holes in the bottom that allowed things to fall so deeply into the springs that it required all sorts of contortions to retrieve them. The couch looked like it fit better at a frat house than our living room, so selling it to a bunch of college kids made a lot of sense.

Except for one thing:

Where's Sky?
Sky loved this couch with a capital L.O.V.E. When the world around him got too overwhelming, he'd bury himself under the seat and back cushions and get his sister to pile on the pillows before jumping on top (not pictured, obviously) to give him some serious compression. (An old post about the Sky's couch is here.)

Understandably, Sky protested our sale of this, his most prized sensory intervention. So, when we decided to sell the couch, we promised Sky we'd find something just as good or better. Of course, I had no idea how hard that would turn out to be. For one thing, the nicer, new furniture we bought doesn't have a lot of removable parts to enable children to burrow into them. 

And, even though I made two quick purchases-- a weighted blanket

and a crash pad--


as soon as we got to our new home, they didn't work nearly as well as the old couch even though I probably paid more for each of them than I did for the couch, which we bought used from a fellow grad student. (They work great for other things--like sleeping and crashing--but not for compression.)

For the past couple of years, then, we tried to make due with what we had on hand--mostly this has meant Sky comes bouncing up to me when he's overstimulated and demands that I squeeze him as hard as I can. There are two problems with this approach, though. First, he's getting bigger and bigger, and soon I won't be able to squeeze him very effectively, and second, if he has to depend on me to help him self regulate, he will never learn to actually self regulate.

So, this Christmas, I broke down and bought a Giant Peapod XL.  It's been perfect for getting Sky to independently pursue sensory intervention when he starts to feel overwhelmed. He willingly climbs into it when he feels he needs a good squeeze. And, not only does it squeeze, but it also rocks back and forth, which is very helpful feature for a kid trying to self-sooth. 

There are a couple of downsides, though. Whoever named this product wasn't lying; it IS giant. Think inflatable life-size canoe. In your living room. I mean, I'm pretty sure it's a big as the couch we sold. Also, it's inflatable, so it just begs for kids to come jumping. When we aren't using it, we store it on its side and against the wall, and we've put some pretty clear rules into place for its use. Still, I imagine its inviting puffiness will attract some unwanted jumping. ***

But, Sky loves it. 

Exhibit A--Little Sister demonstrates.

Heaven.

Blissfully buried.
In fact, all three of the kids like climbing in and relaxing. This is one of their favorite places to read books, and if they sit, two of them can use it at the same time. So far, the benefits far outweigh the inconvenience of having a large pea green canoe taking up space in the basement. I guess the moral of the story is that you shouldn't sell your ratty old couch, even if it does have tears and holes. But, if you do, you can always get a giant pea pod.






***Even without the jumping, our OT tells us these usually only last a couple of years before springing an unfixable leak. The first one we got came with leak in it, and Kelly at autism-products.com was amazing. She got another one in the mail to me ASAP, making the whole exchange fairly stress-free. I will definitely keep using autism-products.com for all future ASD-related purchases (and, no, she didn't pay me to say this). The peapod comes with a repair kit and instructions for fixing leaks.