You're Doing It Wrong

Ever have one of those "Ah ha!" moments when you figure out why something isn't working as expected?

 

Yeah.

 

We've been fighting Acorn about keeping the sensory bin contents in the box - or at least on the shower  curtain we're using as a drop cloth. But somehow the desire to pour rice (or any number of other things) out on the floor just past the edge of the plastic is too strong.

 

He started OT at a new therapist this past spring, and they have beans & rice in small swimming pools. He never dumps it over the side there, and rarely even throws the contents of their bins.

So....

 

This week I bought a small pool. Sensory bins are great for keeping his hands busy post-surgery, and distraction is always good. Sure enough, it was nearly half an hour before we had rice on the floor....even with him pouring rice from a standing position.

 

 

Surgery

Today (when I'm writing this, which is still technically Thursday), Acorn had surgery to finally finish the hypospaduis repar that we started just about 3 years ago.

It's been a tough evening of pain management and distraction (and over an hour spent tracking down a specific med he needs post-surgery). Acorn has screamed himself hoarse today, and is far too jumpy for my comfort.

And it followed a long morning of not eating, being the next-to-last case in the OR, and trying to get my own fasting blood work done after he went back, but them taking over an hour of what turned out to be a 90 minute surgery.

We're hoping tomorrow (today by the time you read this) will be better.

A funny thing happened in the pre-op room. We got several staff members that didn't know us, and one asked if this was Acorn's first procedure. We kind of laughed and said no. And then they wanted to know what else he'd had done. A quick run through puts this at either 14 or 15 procedures total....and he only just turned 5 a month ago.

For those of you with kids with medical issues, you'll understand when I say that's not really a lot of procedures. After all, another friend's daughter had a procedure done last week that puts them in the mid-70s, count wise, and her child is only 7.

On the other hand, those of you more familiar with typical kids might be thinking this is an outrageous number of procedures - I remember one mother I know getting upset that her 3 year old was going to have tubes put in her ears, and it would be her first surgery ever, and she was just too young for that sort of thing. That same week Leaf, at 8 months, was having her 4th procedure, and that didn't count the month that she spent sedated.

It's all about perspective, you know?

Some days, it's easier to find that perspective than others - and I'll be the first to tell you that compassion for others is easier on days when you find that perspective. I'm guessing that it's easier to find perspective on days when you don't have a sobbing child, but right now, even the fact that I have to say that suggests to me that there are some people (on both sides of the special needs divide) who will never find it.

Pagan Festivals and Kids

I'm just going to put it out there that if things were not so complicated this year, and if I'd known about it sooner, I'd've be pushing for us to go here:

http://www.ratatask.org/CampIdunna/index.html

This is how we used to run our big SpiralScouts camping trips when we were leading a group - long before we had kids, long before ventilators and pulse ox machines and tracheostomies.

Lots of activities - water play, crafts, hiking, outdoor skills. Lots of good food, and shared meals. Story telling, enjoying nature, and a community of families who came together for the weekend.

Don't get me wrong, these events were exhausting. We frequently had 50 or more campers to plan for across anywhere from 2 to 5 SpiralScouts Circles and Hearths. But we also split the work. We divided up who was responsible for which meal, each smaller group took on an activity for the whole group, and there were plenty of adults to work with smaller children on things at their level while the bigger ones worked on more advanced skills with other adults.

The kids were the focus, but the adults had fun all the same. Child care wasn't an issue, because the whole event was child oriented. Even for families with special needs, things could be situated to work - we took dietary restrictions into account when planning meals and snacks, we could be flexible as needed to work with a child's specific needs.

Last year it was clear to us that Acorn wasn't going to be successful right now in our local SpiralScouts group (or any other scouting type organization, actually). The debate of whether to do our own Hearth or whether to just wait and see if he was more ready in a year or two was won by exhaustion and apathy - we've done nothing this year, and have not decided about next year.

But sooner or later, I think we'll end up doing something. I just don't know what yet.

It's Birthday Season!

Leaf's birthday was 3 weeks ago. Acorn's was just 2 days ago. And it's been busy.

Acorn's final few days of special ed preschool were this week. We've had lots to organize, including making sure he'll have access to his communication device through the summer - a recent trial shows that while he uses PECS at school willingly, he flat out refuses to use the pictures at home. I guess the fact that he uses them at school is a testament to the communication difficulties he's had with them all year - as soon as they gave him something that they actually wanted him to use, he took off in telling them his needs.

I've been working with several others on a Pagan set of PECS images. I'll have to figure out where we put them on Acorn's device, but they will make having even a basic discussion with him about Sabbats and altars much more useful.

After last year's experience, we're skipping ESY. Knowing how many families fight for their summer hours, it makes me a little skittish about the whole thing, but it's just not a good setup for Acorn. It's a short day, and only a couple days a week. Instead he can hang out at daycare (who is really geeked about using his communication device), and play in the sprinklers and make friends.

Leaf is finally walking, so we're suddenly finding that she's into everything - she's tall enough to see over the edge of the dining room table, so not even the table is a safe place to put things.

And while we're again missing what I'm told is an awesome local Pagan festival this weekend, we're just not in a position to swing it with Leaf's gear this year. Maybe next year...maybe we can do a day trip next year. It's hard to get out and be a part of the community this way, but we will have plenty of time in future years.

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.

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.

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).

Besides...here, 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.