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.
Friday, May 3, 2013
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).
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.
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.
Monday, April 29, 2013
Lunch For Acorn
I'm still a little shocked that Acorn will be going to kindergarten in the fall.
One of our big concerns is lunch - he's picky, and it's an all day kindergarten program, so we'll have to work something out, lunch wise. Though the staff at his new school are quick to assure us that many kindergarteners can't figure out their lunchboxes the first month or so, Acorn's fine motor skills are a little behind, and that makes it an even bigger challenge for him.
One of our big concerns is lunch - he's picky, and it's an all day kindergarten program, so we'll have to work something out, lunch wise. Though the staff at his new school are quick to assure us that many kindergarteners can't figure out their lunchboxes the first month or so, Acorn's fine motor skills are a little behind, and that makes it an even bigger challenge for him.
One tool in our tool box is the PlanetBox lunch boxes I bought last year. Unlike many other lunchboxes in my stash, Acorn can open these on his own.
 |
| My lunch earlier this week - sandwich, salad, cookies |
Being able to open his lunch box all by himself will be a huge step towards independence.
Monday, April 8, 2013
Hospital Food
Hospital food is a mixed blessing - on one hand, it's generally available much of the day, and in many hospitals now, it's available for delivery right to your child's room.
On the other hand.....it's expensive, and of mixed quality.
When Acorn and Leaf had RSV earlier this year, we were trading off who was at the hospital and who was elsewhere; the person coming in to switch shifts brought in food. K brought us dinner a couple nights too. We had a similar pattern in the fall of 2011 when both were hospitalized, just before Leaf got her trach, and the weekends we stayed at the bigger hospital with her, we brought in food in much the same way. This winter's stay made me think, "you know, we ought to write up a plan for what we're going to do about food when we're stuck here so that we can just tell someone to go shopping or go raid our pantry, and bring back X, Y, and Z."
When Acorn had his tonsils out, we almost ended up spending the night. The doctor wanted us to stay longer and make sure he was going to drink well enough; the nurses were panicky about his sats dropping very low and the amount of oxygen he needed to come back up to normal. In the end, we went home on oxygen, because the doctor knew us well enough to know we would be fine at home, but that was long after we'd bought lunch and eaten in the recovery room waiting for transport to the floor, and not before we'd started making plans for someone to go retrieve dinner.
So, that had me thinking again about what an emergency food run would look like for a hospital stay, and I figured I'd share with you all.
First, of the three hospitals we have doctors at, we only will allow for inpatient stays at two of them. Of those two, all but a few areas have a bedside cube fridge. They do not have vending machines in easy reach of the rooms - one has them on the same floor but out in the lobby, and the other has them on some floors out in the entry, but not on all. Too far to walk unless a child is napping (and for us to be inpatient usually involves a child who's not well enough to wander the halls without a mask, and of course mine won't wear masks).
Both hospitals have microwaves available on the floor. And silverware and plates, if need be, though I think it may be worth setting up a stash of plates and plastic ware here at the house for someone to grab. They also have cups, straws, and ice readily available. Both have coffee and milk easily available too.
Acorn is pretty picky when it comes to eating, so if he's inpatient, we've found that it's worth packing in some things he will eat - multigrain or honey nut cheerios for example. His Boost is another good choice - he'll drink it under almost any circumstances, and at 360 calories and 1/4 of his daily vitamin and mineral needs per juice box, it's a reasonable substitute for food when he's not interested in eating.
Leaf subsists mostly on purees and formula. We know the closer hospital doesn't carry her formula, so we need to pack that if she's inpatient.
That leaves food for us adults.
For breakfast, something easy, like muffins or bagels is probably the best choice. They store and transport well, and we can eat them whenever we're up.
For everything else, our best so far has been sandwiches. A loaf of bread, some cheese, and some lunchmeat will last a fair number of meals. Chips of some sort, individual sized fruit cups, and some soda make the second most useful batch of foodstuffs.
For slightly longer stays, prewashed lettuce, tomatoes (and a good knife), croutons and salad dressing, grapes, and other snackable foods make a good addition. Lettuce and tomatoes can go on sandwiches or become salads. Fresh fruits and nuts make good snacks too.
And in the end, we can eat fairly healthy all from the confines of a hospital room, without breaking the bank.
On the other hand.....it's expensive, and of mixed quality.
When Acorn and Leaf had RSV earlier this year, we were trading off who was at the hospital and who was elsewhere; the person coming in to switch shifts brought in food. K brought us dinner a couple nights too. We had a similar pattern in the fall of 2011 when both were hospitalized, just before Leaf got her trach, and the weekends we stayed at the bigger hospital with her, we brought in food in much the same way. This winter's stay made me think, "you know, we ought to write up a plan for what we're going to do about food when we're stuck here so that we can just tell someone to go shopping or go raid our pantry, and bring back X, Y, and Z."
When Acorn had his tonsils out, we almost ended up spending the night. The doctor wanted us to stay longer and make sure he was going to drink well enough; the nurses were panicky about his sats dropping very low and the amount of oxygen he needed to come back up to normal. In the end, we went home on oxygen, because the doctor knew us well enough to know we would be fine at home, but that was long after we'd bought lunch and eaten in the recovery room waiting for transport to the floor, and not before we'd started making plans for someone to go retrieve dinner.
So, that had me thinking again about what an emergency food run would look like for a hospital stay, and I figured I'd share with you all.
First, of the three hospitals we have doctors at, we only will allow for inpatient stays at two of them. Of those two, all but a few areas have a bedside cube fridge. They do not have vending machines in easy reach of the rooms - one has them on the same floor but out in the lobby, and the other has them on some floors out in the entry, but not on all. Too far to walk unless a child is napping (and for us to be inpatient usually involves a child who's not well enough to wander the halls without a mask, and of course mine won't wear masks).
Both hospitals have microwaves available on the floor. And silverware and plates, if need be, though I think it may be worth setting up a stash of plates and plastic ware here at the house for someone to grab. They also have cups, straws, and ice readily available. Both have coffee and milk easily available too.
Acorn is pretty picky when it comes to eating, so if he's inpatient, we've found that it's worth packing in some things he will eat - multigrain or honey nut cheerios for example. His Boost is another good choice - he'll drink it under almost any circumstances, and at 360 calories and 1/4 of his daily vitamin and mineral needs per juice box, it's a reasonable substitute for food when he's not interested in eating.
Leaf subsists mostly on purees and formula. We know the closer hospital doesn't carry her formula, so we need to pack that if she's inpatient.
That leaves food for us adults.
For breakfast, something easy, like muffins or bagels is probably the best choice. They store and transport well, and we can eat them whenever we're up.
For everything else, our best so far has been sandwiches. A loaf of bread, some cheese, and some lunchmeat will last a fair number of meals. Chips of some sort, individual sized fruit cups, and some soda make the second most useful batch of foodstuffs.
For slightly longer stays, prewashed lettuce, tomatoes (and a good knife), croutons and salad dressing, grapes, and other snackable foods make a good addition. Lettuce and tomatoes can go on sandwiches or become salads. Fresh fruits and nuts make good snacks too.
And in the end, we can eat fairly healthy all from the confines of a hospital room, without breaking the bank.
Tuesday, April 2, 2013
The Swamp Sensory Bin
Acorn had his tonsils out last week. It's been a rough few days here.
Acorn loves Kermit. I thought, "hey, how about a swamp themed sensory bin for this long weekend?"
Thanks to Tammy at Praying for Parker, I had water gel to use for the base, which I colored with green food coloring. It says a half teaspoon to 4 ounces, but I doubled the water because an early test showed that to be the texture of very firm jello, and I wanted something less thick.
Frogs, snakes, and lizards are from a party supply store.
Yeah....he wants nothing to do with it. He touched it, made a face, and shook his hands until it all flew off his hand.
So much for that idea.....
Monday, April 1, 2013
Stuff in a Pot
Repost #5 - last one!
*****
Of course, I don't actually have a "right" pot for this - my bigger stockpot is about 4 times the size of this one. I used to have a perfect pot, but it scorched, and now burns anything tomato based, and rather than risk people ruining dinner again, I retired it. It's ok, it cooks down as the leafy things cook.
There is a lot in tonight's dinner that I never ate as a kid - that we would never have been allowed to even buy or cook when I was growing up, because my dad is a very picky eater - he makes my kids look like great eaters :)
This has been my go-to for using up veggies before they went bad, but now that we're not getting a big box every week, I had to buy stuff specifically for this.
"Stuff in a Pot"
1 (or more) packages of smoked sausage. I like kielbasa for this.
Lots of random veggies
garlic - we have a jar of minced garlic, so for this pot I used a big spoonful, probably 1/4 cup. Use less if you don't like garlic, or more if you're making a bigger pot
pepper (1 T or more if you make a bigger pot)
basil (1 T or more if you make a bigger pot)
Tonight, we have a bundle of Swiss chard, a leek, most of an onion, most of a bell pepper, a half dozen small redskin potatoes, the leftovers of a bag of shredded cabbage, and 3 carrots. We've used eggplant, apples, grean beans, peapods, broccoli, cauliflower, squash, sweet potatoes, and probably some other things before too.
Chop into bite sized pieces, and cook for 30-60 minutes until everything seems cooked. Serve with warm crusty bread or garlic bread.
*****
Ever have one of those moments when you realize you picked the wrong pot?
Of course, I don't actually have a "right" pot for this - my bigger stockpot is about 4 times the size of this one. I used to have a perfect pot, but it scorched, and now burns anything tomato based, and rather than risk people ruining dinner again, I retired it. It's ok, it cooks down as the leafy things cook.
There is a lot in tonight's dinner that I never ate as a kid - that we would never have been allowed to even buy or cook when I was growing up, because my dad is a very picky eater - he makes my kids look like great eaters :)
This has been my go-to for using up veggies before they went bad, but now that we're not getting a big box every week, I had to buy stuff specifically for this.
"Stuff in a Pot"
1 (or more) packages of smoked sausage. I like kielbasa for this.
Lots of random veggies
garlic - we have a jar of minced garlic, so for this pot I used a big spoonful, probably 1/4 cup. Use less if you don't like garlic, or more if you're making a bigger pot
pepper (1 T or more if you make a bigger pot)
basil (1 T or more if you make a bigger pot)
Tonight, we have a bundle of Swiss chard, a leek, most of an onion, most of a bell pepper, a half dozen small redskin potatoes, the leftovers of a bag of shredded cabbage, and 3 carrots. We've used eggplant, apples, grean beans, peapods, broccoli, cauliflower, squash, sweet potatoes, and probably some other things before too.
Chop into bite sized pieces, and cook for 30-60 minutes until everything seems cooked. Serve with warm crusty bread or garlic bread.
Thursday, March 28, 2013
He Asked For Milk
Today Acorn had surgery - tonsils out, new tubes in his ears, and a sedated hearing test for good measure.
We always knew that surgery would eventually be harder as he got bigger and older and more aware and more able to communicate....and apparently we're there.
The morning started with him asking for milk - not such a big deal anymore, because he can do that easily in sign language. Only this time, I had to say no. No, I'm sorry, no milk this morning.
Which he followed with "milk please. "
Again, "No, I'm sorry, no milk this morning."
"Hungry. Milk please." as he led me into the bathroom, where we keep the cooler that usually has his special high calorie "milk" for the morning.
And so I said, "no milk this morning, but we can go watch a movie...."
He remembers everything he sees. The toys in the surgical waiting area were great....but walking back to pre-op, the complaints started. And yet for all the complaining....he willingly went back with the anesthesiologist without any Versed. Stickers were enough of a bribe for him to go.
Everything went well. His hearing is fine (which means that the issues we see really are processing issues, not physical issues). In the recovery room, though, his sats dropped into the 70s as he started to rouse, in part because he wasn't swallowing secretions....and in part because he's always needed a little more O2 after surgery, and having been sick all winter, he really wasn't starting out at baseline.
So, we're hanging out in a room on the floor for now, waiting to see if we can get him off the O2 before the doc leaves at 4:30, arguing with people who want to make him more comfortable...but want to check his vitals first, which just sets him off in a tizzy again. As long as he can drink his "milk" and watch his favorite movies, he's in a decent mood.
But still....this has been both more and less difficult than any of us anticipated......
We always knew that surgery would eventually be harder as he got bigger and older and more aware and more able to communicate....and apparently we're there.
The morning started with him asking for milk - not such a big deal anymore, because he can do that easily in sign language. Only this time, I had to say no. No, I'm sorry, no milk this morning.
Which he followed with "milk please. "
Again, "No, I'm sorry, no milk this morning."
"Hungry. Milk please." as he led me into the bathroom, where we keep the cooler that usually has his special high calorie "milk" for the morning.
And so I said, "no milk this morning, but we can go watch a movie...."
He remembers everything he sees. The toys in the surgical waiting area were great....but walking back to pre-op, the complaints started. And yet for all the complaining....he willingly went back with the anesthesiologist without any Versed. Stickers were enough of a bribe for him to go.
Everything went well. His hearing is fine (which means that the issues we see really are processing issues, not physical issues). In the recovery room, though, his sats dropped into the 70s as he started to rouse, in part because he wasn't swallowing secretions....and in part because he's always needed a little more O2 after surgery, and having been sick all winter, he really wasn't starting out at baseline.
So, we're hanging out in a room on the floor for now, waiting to see if we can get him off the O2 before the doc leaves at 4:30, arguing with people who want to make him more comfortable...but want to check his vitals first, which just sets him off in a tizzy again. As long as he can drink his "milk" and watch his favorite movies, he's in a decent mood.
But still....this has been both more and less difficult than any of us anticipated......
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