Monday, May 20, 2013

Eating is Hard

Let's face it - even for very typical kids, parents put in a lot of work keeping them fed. In the beginning, it's breast or bottle (or both) and all the time and equipment and hassle either way...but by 2 or 3 most kids are pretty good about feeding themselves. Even so, there's still the preparation of food, the buying food or growing food, the trying to find things your kids will eat on their picky days (and we all have those phases and things we like and don't like).

Leaf will be 2 in less than a week. Breakfast this morning was a mashed banana in yogurt...and it took over an hour, 3 bibs, and 3 HMEs (a little barrel that goes over the trach and keeps moisture in - it's an artificial nose of sorts) to get through the meal.

Off and on, Acorn decides that instead of food, he'd prefer a carton of his high calorie formula. It's supposed to only be a supplement, and he gets one every morning for sure, but as short as he usually is on calories, it's not like we can say no. As it is, his diet is pretty limited - he rarely eats meats, and mostly sticks to carbs and veggies.

We hear from people every once in a while that kids won't starve themselves - that eventually they'll eat. Clearly those people have never met kids like mine, or kids who can't eat orally.

Friday, May 3, 2013

Sensory Processing and Panic

When people talk about sensory processing disorder (SPD), most of the time you hear about how children need input - spinning, swinging, carrying heavy loads. And often you hear about texture sensitivities - kids who won't walk on grass, who only wear clothes made of certain materials, who think the seams in socks are painful and who find the tags in their shirts unbearable.

You hear less about auditory processing, but just as the other senses can be disjointed and dysfunctional, so to can the ability to process things a person hears.

Our current working hypothesis is that this is part of Acorn's difficulties. Especially since he follows directions well when they're given in sign language (visually) as opposed to verbally. All of our private therapists (OT, speech, psychologist) believe this, and while the school is not so keen on the idea, they agree that there are times his hearing seems off, and that directions given in sign language or using PECS or a communication device are easier for him to follow.

We've known for a long while that something was off in his hearing (though repeated hearing tests have shown normal hearing). As a small baby, his reaction to many toys that made noise was complete and utter terror. As he's grown, that's improved, but things like lawn mowers and vacuums still bother him. There are times where things you say don't seem to make sense to him, even though the same words made sense the day before.

The most amusing - or maybe most embarrassing - outcome of this is actually fairly common in kids with SPD.. More often than not, if you ask him to put on a specific article of clothing, he takes off a different article of clothing. So when the occupational therapist asks him to put on his shoes, he sometimes tries to take off his pants. She says it's a daily occurrence there, and everyone expects it, so at least we feel less crazy when it happens at home.

All of this background is so that you understand why what I'm about to relay happened, and why it was so scary for us.

Acorn does best with a very consistent schedule, because it's easier for him to know what to expect. Explaining changes to the schedule is hard, because he doesn't always process what's being said.

We needed to make up some swimming lessons he missed due to illness,  and so we were going to swimming at a different time than usual, on a different day than usual.

We all told him that he and I were getting in the truck to go swimming. Instead of running for the truck, he waved "bye" to me. When prompted again, he came running, but still didn't really get it. I went and opened the truck door, and told him to come and get in, but he walked to the car, hoping to get in there instead.

I reminded him that we were taking the truck, and asked him to come over and climb into his car seat. And then I opened my door to put my bottle of tea into the cup holder.

When I turned around, he was no where in sight.

In fact, he was not in the street, not between the cars, not in front of the cars......he had vanished.

Instantly, I started to panic, though I knew he couldn't have gone far, and anyplace in the street would have still been in my line of sight (we have a corner lot, giving a lot of street to look for him in). Since he hadn't come past me, he had to be somewhere down the side of the house.

I started around the side of the house, since that wasn't in my direct line of sight, and as I walked farther from the cars, I could see him hanging out at the corner of the deck. He looked at me somewhat confused, wondering why I was calling for him.

Relieved, and also mad, I picked him up and carried him back to the truck, in hopes that we wouldn't be too late for swimming....and with me wondering again how many times this sort of thing is going to happen. He's only escaped the house once, but he's since learned to take the plastic door knob guard off the door, so it's likely only a matter of time before he escapes again. We already have rules that if we're playing outside and he runs into the street, we go in immediately. He's bolted in parking lots.

But so far, there's no real way to get it across to him that running off like this isn't a good idea.

Wednesday, May 1, 2013

Oxygen Masks As Metaphors

If you've ever been on an airplane, you know the speech the flight attendants give includes the statement that you should put on your own oxygen mask before assisting other passengers.

That same sentiment goes around special needs communities fairly frequently too, as an admonition to parents to take care of themselves. And honestly, that's been bothering me off and on for a while now. 

Maybe for some people it makes sense. Not to dismiss the wide variety of special needs and medical issues and disabilities out there, but I'm sure that for some families, it really won't kill anyone if parents take a night off, hire a sitter, and go to dinner, even if it takes a lot to find a sitter that will keep their kids.

At our house, however....sitters are just not going to cut it. We need someone trained to care for Leaf - trach trained and reasonably good at assessing her respiratory status. We really need someone familiar with sign language for Acorn. And to find someone who can do both kids at the same time is clearly just not going to happen (even our primary nurse, who has cared for both of them individually over the years, has said they're too much for one person, which makes me wonder a bit about the days my husband or I have both of them by ourselves)., oxygen masks are real, not just a metaphor. If we don't put a real oxygen mask on a child when they need it because we're trying to put on our metaphoric mask, bad things happen. And that's not happening if I have any control over it.