Okay, I've been slacking. I'll have to talk about IEP's later, but this story needs a bit of a preface. At our IEP meeting a couple weeks ago, Carver's OT suggested we consider having him evaluated for vision therapy. She works with his fine motor skills and one day used kidney beans as part of their therapy. One fell on the floor and he tried to pick it up, but instead of grabbing the bean, he fixated on a red stain on the carpet and repeatedly tried to pick THAT up. So she started wondering about depth perception, etc.... I loved that she was thinking about the whole picture, considering how we might help him. I welcomed the suggestion. She gave me a few places to try and I set up a free screening for today at place in Bellevue with a certain Dr. (OD). I have to admit I was a bit skeptical going in. Vision therapy isn't exactly mainstream and I'm mostly a mainstream kinda girl. I'm going to try to be fair to him as best I can, but when I can't help myself, I'll switch to italics.
It was in a nice enough office in a medical part of town, near the hospital. The staff was friendly, there were toys, the doctor was exceptionally friendly. He asked questions, looked at Carver's eyes with lights, watched how he "tracked" a ball on a stick. Or, in Carver's case, how he did NOT "track" the ball on a stick. The dr. turns to me and says, "this is huge. see how he can't even follow the movement of the ball?"
Hmmm... my skepticism is growing by the minute. The room is fascinating, full of crazy optometry equipment, a video screen, files, books, computers, monitors, chairs, lights, the whole gammet. Everything I've read on SPD tells that in such a stimulating environment, they have a hard time focusing.
He asks him to name things on the screen, which Carver can do. He puts special lenses over Carver's eyes, follows them with a light and determines that his vision is unimpaired. I figured as much. But he also said that Carver has a hard time focusing on things up close (bringing his eyes together) and probably sees double. I think he ascertained that from the two tries he gave him to look at that same little ball on a stick. But the dr was between me and Carver and I'm not exactly sure where that conclusion stems from. The doctor demonstrated for me what it might be like to look at a written page and see double (not that I couldn't imagine this.)
He asked about our insurance, who it's through. I told him Blue Cross and he said, but what company? I told him Derek's employer and he said confidently, "oh, then it'll be fine."
What?! It's a small company. How does he know? Weird.
He kept pressing me to say that Carver doesn't want to look at books, that he prefers to do other things. But Carver loves to be read to. He asks questions, points to things, wiggles around on the couch like crazy - yes. But books haven't been an issue for him in a long time.
So he recommended an addition full evaluation ($290 out of pocket) and then personalized vision therapy. They'd look into insurance costs for us for that. I asked him what vision therapy might look like for Carver. He said that they do a lot of it at home now, downloading therapy homework on the computer and then submitting it back to the office. We don't have to come in all the time.
HELLO! Carver is 4!! He can't use utensils or pencils with consistency. He's supposed to do homework on the computer!?!?
Also, they do pictures that they can only see one part at a time without using both eyes together, using games and whatnot. That made more sense, but it's still pretty nonspecific.
He said a lot of crazy stuff that I won't be able to remember accurately. Here's the gist, without any of my commentary thrown in, I promise. He's been doing this for 40 years and can always figure out what is going on with kids. If he just thinks about it long enough, he can find the reason for their behavior. Sensory motor processing issues (he called it something like that) is really just that the kids are stuck at a lower form of development and they haven't reached vision yet (since it generally comes later in the developmental process). If you do vision therapy, it'll fix all the other stuff because essentially it'll fix his SPD. He gave the example of sitting on his stool. He relies on vision to keep himself there, but if you're wiggling all around to find the edges of the stool and understand gravity, that's just socially unacceptable. It's not wrong, these kids are born obnoxious, they just need to be taught to use vision to understand the world instead of their tactile senses. He recently went to a workshop where someone taught him that speech is related to our thought process because it's like talking in your head! (He said this was great enthusiasm, certain that he was enlightening me on this point, as well.) Vision is integral to this process. I'm still unclear how he connected that. Oh - maybe it was because if we could see what was really going on around us, we'd be able to communicate about it. I think that was it. On our way out, he asked about Carver's eating and said that we crave what we're allergic to and we should really consider switching to soy or eliminated wheat if that's what he likes. Talk about random, although food issues aren't to be ruled out. I just didn't think OD's were nutrionists or gastroenterologists. I asked how attention span played into it and I think he said that vision therapy would help him focus on things longer, that his behavior would drastically improve.
WHOA. I don't know what to say to all that!! Seriously?! He downplayed the importance of language, assured me that vision therapy fixes SPD because we just need to give Carver a new way of gaining information. It was absolutely crazy. I've NEVER met a doctor so completely uneducated in SPD - EVER. It was mind boggling.
Even with all my inward rantings and my outward struggles not to look at him like he's crazy while he's talking to me, I think there could be a grain of truth mixed in all of that mumbo-jumbo. I get the idea that helping Carver focus and track things with his eyes would help his ability to do fine motor skills. It might even help him learn to take in his environment in a more organized, controlled way. But we are not going back there. I'll look into another place or two and see what comes of it. Sheesh! What a waste of time. At least it was free.
Tuesday, October 20, 2009
Thursday, September 10, 2009
Dr. Glass, pediatric neurologist - Part 1
Okay, I'm starting to get paranoid that I'm going to forget stuff and then I'll get the paperwork and he won't have mentioned things I cared about. I just like to worry. I'll fill in the holes later.
We talked about Carver's basic history, timeline.
We talked about how we handle temper tantrums - how often, what they are about, etc... He recommended using parental "mechanical arms" to restrain Carver during a tantrum and using the words "I know you are upset. When you are ready, we'll play/go back/finish up." No arm rubbing, no pacifier, no calming words or rocking. The point is that he learns to calm HIMSELF and I really like that. I've already started using it and I feel so much more in control because it's NOT in my control anymore, if that makes sense. I don't have to figure out how to talk him out of the tantrum because that's not my job. Good feeling. He said that essentially, we don't want to rescue him from his frustration/tantrum and send a message that he can't do it by himself, that he needs us to do it.
(I've been trying to give him LOTS of opportunities to do things himself because it builds self confidence and besides, it keeps him happy. Nothing as fun as moving garbage cans on garbage day!)
Also, tantrums may start out about something in particular and then turn into "mad because I'm mad" and certainly they feel remorse for anything they did when they lost control. And it's a definite loss of control. He recently hit a friend when he was upset about the friend needing to go home and I knew he felt bad afterwards, but he didn't really mean to. I guess he did because he aimed and everything, but it was such an impulsive action that it wasn't intended. It must be terribly frustrating to not know how to handle negative emotions.
I loved what Dr. Glass said about temper tantrums. Carver learns throught them. It might be appealing to avoid them, to give in to what he wants. But it doesn't teach him anything. It's in learning to manage that anger and disappointment that he makes progress. Great perspective.
On a related not, he said that kids learn more from watching how other kids are disciplined and treated than how they themselves are disciplined. So as we respond to Grace can teach Carver powerful lessons. And vice versa. Which should help with some of her imitations of his less appropriate behaviors. Interesting to consider. AND praise is nice, but what you hear people say about you to another matters the most. I think that's true of adults, too, and the reason gossip is so destructive.
We talked about quiet times. I confessed that I lock him in his room every day for quiet time, he cries and usually falls asleep on his bed. He was a HUGE fan of this (whew!) and said that kids need more downtime, especially after a long day at school. He said 30 minutes of screen time can really work, as well, so long as it really ends at 30 minutes. The fact that Carver is often climbing in his bed and going to sleep is also a good sign because he's listening to his body and solving his own problem. Usually I hear him play for a minute or two and yesterday he only played, but honestly - it's 4:30 by the time we're back from the bus stop and finished with our quick snack. He's exhausted. And it gives me a chance to decompress school with the girls - do homework, review backpacks, hear their important news.
We talked about his anxiety the night before and he said it was absolutely related. So is Carver's recent sleep walking. He said night terrors are common, too.
Basically, Sensory Processing Disorder is broken down into 3 parts.
1 - AROUSAL:
A normal state of arousal varies between a lower level (think of someone easily distracted at a cocktail party, talks to lots of people, doesn't concentrate on one thing at a time, doesn't maintain good eye contact) and a high level (think of someone that walks into that same cocktail party and immediately observes what everyone is wearing, how the furniture is arranged, where the food is, where the exit is, who is talking to whom and probably doesn't even want to be there. Also more likely to have good eye contact in conversation). Derek and I are on that end! :)
Beyond that lower end of normal you have ADHD. They have such low levels of arousal that they have a hard time functioning because they are so neurologically drowsy. Stimulants bring them up into the normal range. I'm guessing that it's distracting to be so under aroused, maybe the world seems abrupt and hard to figure out?
Above the high end of normal, you get SPD and beyond that is the Autism Spectrum. So SPD, whether over-sensitive or under-sensitive is a higher state of neurological arousal. It's complicated because there are all these overlapping issues, right? Definitely! Carver's always so tuned into what's going on around him - the sounds and sights - that he just wants to touch it all, be a part of it all. (Other kids might be trying to avoid all those things.) We try to calm him with sensory therapy to offset that over-arousal. It's hard to focus on filling out all those school emergency forms if your kids are pulling at you, the oven is beeping and it's a really hot day. That's the feeling of over-arousal.
2 - SENSORY ISSUES
Carver is over sensitive to sounds. He is scared of thunder, garbage trucks, sudden applause, yelling children, etc... He is under sensative to touch and oral sensations. He craves things in his mouth (gum, yum-yum, toys, crocs! and strings - food, too!) He also seeks physical touch, swinging, crashing into stuff, my arms, hair, etc...
3 - ANXIETY
It's not hard to imagine that a world like Carver's is overwhelming. That's why routine is so important, why it helps keep things in order. Disruptions to his routine are often causes of tantrums. Dad had to go help with a move instead of finish our family bike ride. A sudden change of plans is very difficult. Or giving stuff to people, things he's gotten to associate as part of his life. For example - the zucchini. Dr. Glass said that while he may not like zucchini, he's realizing where it fits in his life. It grows in the backyard, we cut it off, put it on the counter. When I give it to a neighbor, it's distrupted from our regular routine. I'm thinking that if the regular routine was to wrap it up and take it to someone, that would be no problem. Unforunately, life is full of unexpected events. I can't really avoid all of them.
I think he said that we treat the sensory needs to help regulate his over-arousal. Swinging and crashing, tickling and spinning in a chair gives good steady sensory input to minimize the "cravings" and give him a feeling of order and balance to accomplish other tasks.
We also talked about his dyspraxia or apraxia. He rated him about a 7 1/2 on a scale from 0-10, 0 being no dyspraxia and 10 being most severe. Carver really didn't talk much for him, so I might bring that down a notch. Still, it was a good reminder that his delays are significant. He recommended speech therapy in addition to what he gets at school. The wait list is probably til around January at Children's Therapy Center but we're on it just the same. I might see if I can find another place to go, although if we stick with CTC, it makes my appointments with Dr. Glass more legitimate (we got to see him because our previous therapist pulled some strings).
He talked about language (grammar, usage, etc...) as a wall and how delays are like bricks missing from the wall. You can add them in later, but those holes affect ability to communicate effectively. He said that often with dyspraxia there are language holes. It is hard to know which came first, but there are clearly gaps in what Carver understands and communicates. We're filling them in, though, little by little.
He thought that we'd be better off tackling rumination later when Carver has more language skills.
I asked about potty training, if I can wait for the same signs of readiness of typically developing kids and he said yes. He will get there and in the meantime, make it a non issue. That's hard, but I've been trying already. I'm sure our pressure on him relates to his withholding issues right now. It'll be awhile. He recommended TRIPLE underwear when we're ready or undies under the pull-up. Maybe NEXT summer? :)
His wife does behavior counseling and he is going to give us her contact information. I guess she is one of the few in the area to meet with families and help them tackle behavioral issues. I mentioned that I was on the OT list because I wanted more help with those sorts of things. Really, he doesn't think that OT is as important as developing language skills. And OT wouldn't solve all those issues. I'm curious to see what his wife does.
He warned that reading might be hard, but that's hard to predict. He thought that writing would definitely be a challenge. I'm so mature I'll worry about that later.... Okay, okay - I am so full of present day worries, I don't have room for those!!
He listed a bunch of qualities that these kids have, here's the few I can remember:
charming
kind
empathetic
inflexible
He was right on the money. Carver is really delightful. And exactly like that poem about the girl with the curl in the middle of her forehead -
when she was good, she was very very good and when she was bad, she was horrid.
He played with Carver, talked about flashcards:
"what's this?"
tree
"what falls out of a tree?"
people
"people fall out of a tree?"
yes
"what goes on the ground under the tree?"
people
okay.... moving on....
"what's this?"
sun
"is the sun hot or cold"
cold
"the sun is COLD?"
giggles, yeah
"Carver, is the sun hot or cold?"
cold
Hmmm... I think these illustrates the kind of language gaps that we're dealing with. Sometimes I wonder if Carver thought it was a game to tease Dr. Glass, but really he answers crazy like that to all sorts of things.
He had him push the button on a small measuring tape with his pointer - Carver LOVED that game because Dr. Glass made a funny sound and zipped it back up. I also think Carver laughed and laughed in part because he was SOOO tired and because it was a release from the anxiety of being in this small room with only a few toys and 3 adults talking about him. It was adorable.
He checked reflexes, looked in his eyes and mouth. Carver loved that little hammer. He had him chase the measuring tape down the hall and as soon as he brushed next to him, he dashed off to another classroom. A constant challenge for me, too.
He said that SPD kids really respond to reaction. Facial expressions, tone of voice, body language. They are super receptive. Keeping a blank face can really help "win" battles. I think Carver feels like he wins when he gets any reaction at all -positive or negative. Unfortunately, he wins all the time around here!
I wish I'd asked about flax seed oil. Anyone know what he thinks of that sort of thing?
Okay, that is a lot of stuff. And really, I'm SURE I left out more. 90 minutes is a long conversation. But I'm worn out....I bet you are, too! More later when I have those doctor notes.
We talked about Carver's basic history, timeline.
We talked about how we handle temper tantrums - how often, what they are about, etc... He recommended using parental "mechanical arms" to restrain Carver during a tantrum and using the words "I know you are upset. When you are ready, we'll play/go back/finish up." No arm rubbing, no pacifier, no calming words or rocking. The point is that he learns to calm HIMSELF and I really like that. I've already started using it and I feel so much more in control because it's NOT in my control anymore, if that makes sense. I don't have to figure out how to talk him out of the tantrum because that's not my job. Good feeling. He said that essentially, we don't want to rescue him from his frustration/tantrum and send a message that he can't do it by himself, that he needs us to do it.
(I've been trying to give him LOTS of opportunities to do things himself because it builds self confidence and besides, it keeps him happy. Nothing as fun as moving garbage cans on garbage day!)
Also, tantrums may start out about something in particular and then turn into "mad because I'm mad" and certainly they feel remorse for anything they did when they lost control. And it's a definite loss of control. He recently hit a friend when he was upset about the friend needing to go home and I knew he felt bad afterwards, but he didn't really mean to. I guess he did because he aimed and everything, but it was such an impulsive action that it wasn't intended. It must be terribly frustrating to not know how to handle negative emotions.
I loved what Dr. Glass said about temper tantrums. Carver learns throught them. It might be appealing to avoid them, to give in to what he wants. But it doesn't teach him anything. It's in learning to manage that anger and disappointment that he makes progress. Great perspective.
On a related not, he said that kids learn more from watching how other kids are disciplined and treated than how they themselves are disciplined. So as we respond to Grace can teach Carver powerful lessons. And vice versa. Which should help with some of her imitations of his less appropriate behaviors. Interesting to consider. AND praise is nice, but what you hear people say about you to another matters the most. I think that's true of adults, too, and the reason gossip is so destructive.
We talked about quiet times. I confessed that I lock him in his room every day for quiet time, he cries and usually falls asleep on his bed. He was a HUGE fan of this (whew!) and said that kids need more downtime, especially after a long day at school. He said 30 minutes of screen time can really work, as well, so long as it really ends at 30 minutes. The fact that Carver is often climbing in his bed and going to sleep is also a good sign because he's listening to his body and solving his own problem. Usually I hear him play for a minute or two and yesterday he only played, but honestly - it's 4:30 by the time we're back from the bus stop and finished with our quick snack. He's exhausted. And it gives me a chance to decompress school with the girls - do homework, review backpacks, hear their important news.
We talked about his anxiety the night before and he said it was absolutely related. So is Carver's recent sleep walking. He said night terrors are common, too.
Basically, Sensory Processing Disorder is broken down into 3 parts.
1 - AROUSAL:
A normal state of arousal varies between a lower level (think of someone easily distracted at a cocktail party, talks to lots of people, doesn't concentrate on one thing at a time, doesn't maintain good eye contact) and a high level (think of someone that walks into that same cocktail party and immediately observes what everyone is wearing, how the furniture is arranged, where the food is, where the exit is, who is talking to whom and probably doesn't even want to be there. Also more likely to have good eye contact in conversation). Derek and I are on that end! :)
Beyond that lower end of normal you have ADHD. They have such low levels of arousal that they have a hard time functioning because they are so neurologically drowsy. Stimulants bring them up into the normal range. I'm guessing that it's distracting to be so under aroused, maybe the world seems abrupt and hard to figure out?
Above the high end of normal, you get SPD and beyond that is the Autism Spectrum. So SPD, whether over-sensitive or under-sensitive is a higher state of neurological arousal. It's complicated because there are all these overlapping issues, right? Definitely! Carver's always so tuned into what's going on around him - the sounds and sights - that he just wants to touch it all, be a part of it all. (Other kids might be trying to avoid all those things.) We try to calm him with sensory therapy to offset that over-arousal. It's hard to focus on filling out all those school emergency forms if your kids are pulling at you, the oven is beeping and it's a really hot day. That's the feeling of over-arousal.
2 - SENSORY ISSUES
Carver is over sensitive to sounds. He is scared of thunder, garbage trucks, sudden applause, yelling children, etc... He is under sensative to touch and oral sensations. He craves things in his mouth (gum, yum-yum, toys, crocs! and strings - food, too!) He also seeks physical touch, swinging, crashing into stuff, my arms, hair, etc...
3 - ANXIETY
It's not hard to imagine that a world like Carver's is overwhelming. That's why routine is so important, why it helps keep things in order. Disruptions to his routine are often causes of tantrums. Dad had to go help with a move instead of finish our family bike ride. A sudden change of plans is very difficult. Or giving stuff to people, things he's gotten to associate as part of his life. For example - the zucchini. Dr. Glass said that while he may not like zucchini, he's realizing where it fits in his life. It grows in the backyard, we cut it off, put it on the counter. When I give it to a neighbor, it's distrupted from our regular routine. I'm thinking that if the regular routine was to wrap it up and take it to someone, that would be no problem. Unforunately, life is full of unexpected events. I can't really avoid all of them.
I think he said that we treat the sensory needs to help regulate his over-arousal. Swinging and crashing, tickling and spinning in a chair gives good steady sensory input to minimize the "cravings" and give him a feeling of order and balance to accomplish other tasks.
We also talked about his dyspraxia or apraxia. He rated him about a 7 1/2 on a scale from 0-10, 0 being no dyspraxia and 10 being most severe. Carver really didn't talk much for him, so I might bring that down a notch. Still, it was a good reminder that his delays are significant. He recommended speech therapy in addition to what he gets at school. The wait list is probably til around January at Children's Therapy Center but we're on it just the same. I might see if I can find another place to go, although if we stick with CTC, it makes my appointments with Dr. Glass more legitimate (we got to see him because our previous therapist pulled some strings).
He talked about language (grammar, usage, etc...) as a wall and how delays are like bricks missing from the wall. You can add them in later, but those holes affect ability to communicate effectively. He said that often with dyspraxia there are language holes. It is hard to know which came first, but there are clearly gaps in what Carver understands and communicates. We're filling them in, though, little by little.
He thought that we'd be better off tackling rumination later when Carver has more language skills.
I asked about potty training, if I can wait for the same signs of readiness of typically developing kids and he said yes. He will get there and in the meantime, make it a non issue. That's hard, but I've been trying already. I'm sure our pressure on him relates to his withholding issues right now. It'll be awhile. He recommended TRIPLE underwear when we're ready or undies under the pull-up. Maybe NEXT summer? :)
His wife does behavior counseling and he is going to give us her contact information. I guess she is one of the few in the area to meet with families and help them tackle behavioral issues. I mentioned that I was on the OT list because I wanted more help with those sorts of things. Really, he doesn't think that OT is as important as developing language skills. And OT wouldn't solve all those issues. I'm curious to see what his wife does.
He warned that reading might be hard, but that's hard to predict. He thought that writing would definitely be a challenge. I'm so mature I'll worry about that later.... Okay, okay - I am so full of present day worries, I don't have room for those!!
He listed a bunch of qualities that these kids have, here's the few I can remember:
charming
kind
empathetic
inflexible
He was right on the money. Carver is really delightful. And exactly like that poem about the girl with the curl in the middle of her forehead -
when she was good, she was very very good and when she was bad, she was horrid.
He played with Carver, talked about flashcards:
"what's this?"
tree
"what falls out of a tree?"
people
"people fall out of a tree?"
yes
"what goes on the ground under the tree?"
people
okay.... moving on....
"what's this?"
sun
"is the sun hot or cold"
cold
"the sun is COLD?"
giggles, yeah
"Carver, is the sun hot or cold?"
cold
Hmmm... I think these illustrates the kind of language gaps that we're dealing with. Sometimes I wonder if Carver thought it was a game to tease Dr. Glass, but really he answers crazy like that to all sorts of things.
He had him push the button on a small measuring tape with his pointer - Carver LOVED that game because Dr. Glass made a funny sound and zipped it back up. I also think Carver laughed and laughed in part because he was SOOO tired and because it was a release from the anxiety of being in this small room with only a few toys and 3 adults talking about him. It was adorable.
He checked reflexes, looked in his eyes and mouth. Carver loved that little hammer. He had him chase the measuring tape down the hall and as soon as he brushed next to him, he dashed off to another classroom. A constant challenge for me, too.
He said that SPD kids really respond to reaction. Facial expressions, tone of voice, body language. They are super receptive. Keeping a blank face can really help "win" battles. I think Carver feels like he wins when he gets any reaction at all -positive or negative. Unfortunately, he wins all the time around here!
I wish I'd asked about flax seed oil. Anyone know what he thinks of that sort of thing?
Okay, that is a lot of stuff. And really, I'm SURE I left out more. 90 minutes is a long conversation. But I'm worn out....I bet you are, too! More later when I have those doctor notes.
Tuesday, September 8, 2009
Back to Preschool 2009
HURRAY! The day we've been waiting for has come. And oh - what a day. What a night before the big day...
We told Carver last night that we were taking him to a doctor in the morning, then play with Grace, eat lunch and hop on the bus to school. It's kinda routine to go through these main events ahead of time. I also use a velcro strip and pictures on the fridge to illustrate each day, at least SOME days. :) Anyway, he went to bed okay but woke up sometime... (Daddy got him first, I'm a little slower to hear things at night) and he tossed and turned and whimpered for hours. He didn't have a fever, his cold is gone, his stomach wasn't making churning noises. He just couldn't sleep. Sometimes he said that something hurt, but it wasn't clear if anything really did. We did drinks of water, a change of pjs and took turns sleeping in his bed. He seemed to calm down when we talked to each other, rubbed his arms and back and head. I began to believe that he wanted to sleep but couldn't - that he had anxiety about today. And I still believe that.
He'd asked questions about the doctor - "look tummy?" No, not this time. "Look ears?" Nope. I didn't know how to explain pediatric neurology to him. Guess I should've thought of that sooner. He asked if the doctor was nice and I had assured him he was. Daddy was coming, too, which probably triggered something unusual to him. Also, it was his first day with a new preschool teacher and the room hadn't been set up completely at the open house. It was new and different, even though we'd done it before. Preschool was after lunch instead of after breakfast. Looking back I think it was a lot to worry about. And we probably should've surprised him with the doctor part. He doesn't mind going to see a doctor and doesn't really need prep for it. I thought he might even be excited. I'll blog about that another day, but it was a really great visit. The office will send us notes from the appointment in a week and I can use them to "remember" all we talked about. It was right about 90 minutes, we got home with time for a little swingset time, some lunch and the Letter Factory as a transitional, calming time before hopping on the bus.
About 12:40 we start waiting for our 12:45 pick-up time. I shoulda known better. Buses are ALWAYS late on the 1st day.
Carver stuck a screwdriver in a random piece of Styrofoam and pretended to paint the house with a terrible squeaking noise.
Then he goofed around with Grace for awhile...
Until it was now 1 pm and I called transportation to make sure we hadn't been forgotten. Nope. Just slow buses.
Grace and Carver were yelling and hitting each other so off to her nap she went. This is actually Carver running to rescue his precious bag of school supplies - Wheat Thins and Kleenex.
And it was just the two of us. And the camera.
He swept the driveway.
He inspected the sewer. He even yelled down there a bit.
Finally, FINALLY the bus came about 1:15. Whew. It was a long wait. He was hesitant, he wanted to wait til it had stopped making those sounds buses make when they brake. Then he climbed on and waved good-bye.
And then it was VERY quiet standing in my driveway. I was a tiny, tiny bit sad about that silence. But mostly happy that we'd made it. I loved the peace and quiet that afternoon - I just need to learn how to manage my days to take the most advantage of it. I should've napped! What a concept!
I worried about how afternoon preschool would be, but Carver came off the bus happy as a clam and didn't melt down until AFTER we'd picked up the girls at their bus stop (another story for another day, but it turns out the school district thinks I can be in 2 places at once) and got in the house. A little quiet time-turned naptime and we survived. I can't let him sleep too long, but he needs a break from everything by 4:30. This just might work.
We told Carver last night that we were taking him to a doctor in the morning, then play with Grace, eat lunch and hop on the bus to school. It's kinda routine to go through these main events ahead of time. I also use a velcro strip and pictures on the fridge to illustrate each day, at least SOME days. :) Anyway, he went to bed okay but woke up sometime... (Daddy got him first, I'm a little slower to hear things at night) and he tossed and turned and whimpered for hours. He didn't have a fever, his cold is gone, his stomach wasn't making churning noises. He just couldn't sleep. Sometimes he said that something hurt, but it wasn't clear if anything really did. We did drinks of water, a change of pjs and took turns sleeping in his bed. He seemed to calm down when we talked to each other, rubbed his arms and back and head. I began to believe that he wanted to sleep but couldn't - that he had anxiety about today. And I still believe that.
He'd asked questions about the doctor - "look tummy?" No, not this time. "Look ears?" Nope. I didn't know how to explain pediatric neurology to him. Guess I should've thought of that sooner. He asked if the doctor was nice and I had assured him he was. Daddy was coming, too, which probably triggered something unusual to him. Also, it was his first day with a new preschool teacher and the room hadn't been set up completely at the open house. It was new and different, even though we'd done it before. Preschool was after lunch instead of after breakfast. Looking back I think it was a lot to worry about. And we probably should've surprised him with the doctor part. He doesn't mind going to see a doctor and doesn't really need prep for it. I thought he might even be excited. I'll blog about that another day, but it was a really great visit. The office will send us notes from the appointment in a week and I can use them to "remember" all we talked about. It was right about 90 minutes, we got home with time for a little swingset time, some lunch and the Letter Factory as a transitional, calming time before hopping on the bus.
About 12:40 we start waiting for our 12:45 pick-up time. I shoulda known better. Buses are ALWAYS late on the 1st day.
Carver stuck a screwdriver in a random piece of Styrofoam and pretended to paint the house with a terrible squeaking noise.
Then he goofed around with Grace for awhile...
Until it was now 1 pm and I called transportation to make sure we hadn't been forgotten. Nope. Just slow buses. Grace and Carver were yelling and hitting each other so off to her nap she went. This is actually Carver running to rescue his precious bag of school supplies - Wheat Thins and Kleenex.
And it was just the two of us. And the camera.
He swept the driveway.
He inspected the sewer. He even yelled down there a bit.
Finally, FINALLY the bus came about 1:15. Whew. It was a long wait. He was hesitant, he wanted to wait til it had stopped making those sounds buses make when they brake. Then he climbed on and waved good-bye.
And then it was VERY quiet standing in my driveway. I was a tiny, tiny bit sad about that silence. But mostly happy that we'd made it. I loved the peace and quiet that afternoon - I just need to learn how to manage my days to take the most advantage of it. I should've napped! What a concept!
I worried about how afternoon preschool would be, but Carver came off the bus happy as a clam and didn't melt down until AFTER we'd picked up the girls at their bus stop (another story for another day, but it turns out the school district thinks I can be in 2 places at once) and got in the house. A little quiet time-turned naptime and we survived. I can't let him sleep too long, but he needs a break from everything by 4:30. This just might work.
Tuesday, September 1, 2009
Summer recap
Oh, boy - what a bad blogger I've been! Our summer has gone fast and been SO much better than I feared. I really dreaded the "all day, every day" feeling of summer and was sure that Carver would regress with just me as a therapist. And that I'd lose my mind. But he's been doing great!! So did I! Here's what's new:No more naps - except for that classic dozing in the car
He's jumping like crazy. Get that kid a trampoline! :)
I hear him playing around with sounds. Big "p" sounds in particular.
We got a swingset and it's been fabulous for him. The kids play together well, too.
Carver's on a waiting list for private OT services.
He has an appointment with a pediatric neurologist next week
Preschool will be in the afternoon this year, starting Sept. 8th
Carver starts swimming lessons in a couple weeks!
He's talking so much more, has lots to tell us about.
He wants softer karate chops and tickles (a good sign!)
the yum-yum stays in the bed
We didn't have a really regular routine since there were so many trips and adventures over the summer, but he thrived on the new things to do and see. I loved seeing him play with his sisters this summer, but I think everyone is ready for a little space. I'm excited for afternoon preschool because his little sister still naps and I am GUARANTEED peace and quiet 4 days a week. WOW! Also, we can go to library storytimes and stuff together. And preschool gets the grumpy time.... when Carver really needs stuff to do. He has a new teacher this year, she seems great, he's super excited.
The pictures are from our weekend picnic dinner up at Mt. Rainier. It is rare to have any pictures of Carver turn out well, but these were pretty good!
Monday, June 15, 2009
Endoscopy Day
First the main headline: the test results were normal. If that's what you were curious about, I've saved you the trouble of reading more than you wanted. :)
Now the nitty gritty... We had a check in time of 8 am, scheduled procedure of 9:15 am. Carver could eat normally up to 7 pm the night before, which was fine. We always finish dinner by then. He had water at bedtime and then that was it until after the endoscopy. I was a little worried about him getting grouchy in the morning, but he did fine with it. He got up at 5, but Daddy got him to get back in bed and slept til we woke him up to leave just before 7. I made it downtown with almost no traffic whatsoever. We checked in at 3 desks, got bracelets for him and his dog (and I totally blanked when she asked my social security number - embarrassing!) and waited. And waited. We saw a cool octopus painted on a wall, a neat bench that looked like a Native American canoe (boat to Carver) and mostly walked around touching everything. Carver was SUPER excited to be there. He'd heard my explanation to the girls and immediately latched on to sleeping at the hospital. He was also looking forward to juice afterwards since I'm cheap and never buy it anymore.
Carver was about out of fun things to do when the nurse called us. We followed her back to an exam room. She did his blood pressure, temperature, height and weight, tried to get the oxygen reader on his finger but he wouldn't cooperate for that one. He got to change into a hospital gown on top and funny socks with "stickers" (non skid paint) on the bottom. In this room he got to watch Diego and Dora, which was nice. After another while waiting in here and being prepped on the schedule two -three different times, I signed another consent, met the anesthesiologist who took us back to the operating room.
Whoa. It was a big stark room with a lot of equipment and at least 5 adults. Carver and I were both intimidated. He just stood there and I tried not to look at stuff that might be scary. He climbed up onto the bed with some help and then refused to wear the mask. In all my briefing at the hospital and before hand, no one had bothered to tell me that his inital anesthesia would be laughing gas through a mask. I would've prepped him and it might have helped. But maybe it wouldn't have. I wish I would've had the opportunity and that was my only complaint for the day. They tried to make it fun by showing him that breathing in the mask would make a balloon inflate. Nice try!! In the end, all of us held him down and he cried into the mask. I wiped his tears, told him it was okay and watched his eyes roll back and his body relax. It only took 15 seconds or so, I'm sure. Crying probably helped. But it was sad to watch. We moved him to a good position on the bed and they ushered me out. I didn't want to be there, but it was a tender time to leave him. I probably looked worried because the nurse walking me out to the waiting room asked if I was okay. Or maybe most parents have a hard time with it. I didn't cry, but it was easy to imagine the tears coming!
I waited a few minutes, remembered that I knew things would be fine and picked up the book I brought to pass the time. I jumped at every door creak, but it was nice to think about something else while I waited. I bet it wasn't 20 minutes before the doctor came out with pictures of Carver's stomach, small intestine (right?), and esophogas. All normal. They were very pink and squishy looking. Maybe I'll scan the picture for you. Or maybe not. I'm a liberal arts major and body stuff can kinda creep me out sometimes. A few more minutes passed and the nurses came to tell me he was waking up.
He was in a new room in a small hospital bed with railings, not a crib though. He had those heart monitor stickers on, an IV on the top of his foot and was sitting up without his shirt on. He'd wanted it off in the operating room. The nurses just loved him because he woke up so suddenly. They told me he turned onto his stomach with his bum in the air and pulled his Buzz and Woody blanket over his head. He peeked out and said, "hi." What a cutie he can be! He was dizzy and still a little groggy when I came in, but he drank some apple juice and nibbled on an orange popsicle. He wasn't keen on taking out the IV, but we got it out. He really was a cutie. Several times he saw a mask hanging by the cords and whatnot and said, "all done balloon." But he didn't freak out and I promised the balloon was all done. No more mask, Carver. He wanted to keep his pjs bottoms on, but I put his t-shirt on and his crocs and he walked out with me. We sat on the boat bench and he ate his fruit snacks then I carried him to the van. And home we went!
My friend Caroline had his sisters all morning so I picked them up and made it home for some Kipper time before lunch. Not too bad! I expected him to be dizzy, but he really wasn't. He sure was when he got tubes a couple years ago! He didn't ever take a nap. I suppose even a medically induced nap counts as a nap. Darn! He's happy as a clam, good as new - well, more like every bit as grumpy as normal and getting into mischief everywhere I turn. Did I mention he likes to go outside and turn the sprinklers on right now!?
There are still biopsy results to come. Probably a week, maybe two. I expect that they'll be normal, as well. And that's fine with me! Another problem or decision sounds like a lot to deal with right now. I think they also test for allergies, which will be interesting since we have a strong family history of allergies.
Meanwhile, I have the assurance that proceeding with treatment for the rumination is all we can do. And since it seems to be a hard row to hoe, I need every bit of assurance I can get.
Now the nitty gritty... We had a check in time of 8 am, scheduled procedure of 9:15 am. Carver could eat normally up to 7 pm the night before, which was fine. We always finish dinner by then. He had water at bedtime and then that was it until after the endoscopy. I was a little worried about him getting grouchy in the morning, but he did fine with it. He got up at 5, but Daddy got him to get back in bed and slept til we woke him up to leave just before 7. I made it downtown with almost no traffic whatsoever. We checked in at 3 desks, got bracelets for him and his dog (and I totally blanked when she asked my social security number - embarrassing!) and waited. And waited. We saw a cool octopus painted on a wall, a neat bench that looked like a Native American canoe (boat to Carver) and mostly walked around touching everything. Carver was SUPER excited to be there. He'd heard my explanation to the girls and immediately latched on to sleeping at the hospital. He was also looking forward to juice afterwards since I'm cheap and never buy it anymore.
Carver was about out of fun things to do when the nurse called us. We followed her back to an exam room. She did his blood pressure, temperature, height and weight, tried to get the oxygen reader on his finger but he wouldn't cooperate for that one. He got to change into a hospital gown on top and funny socks with "stickers" (non skid paint) on the bottom. In this room he got to watch Diego and Dora, which was nice. After another while waiting in here and being prepped on the schedule two -three different times, I signed another consent, met the anesthesiologist who took us back to the operating room.
Whoa. It was a big stark room with a lot of equipment and at least 5 adults. Carver and I were both intimidated. He just stood there and I tried not to look at stuff that might be scary. He climbed up onto the bed with some help and then refused to wear the mask. In all my briefing at the hospital and before hand, no one had bothered to tell me that his inital anesthesia would be laughing gas through a mask. I would've prepped him and it might have helped. But maybe it wouldn't have. I wish I would've had the opportunity and that was my only complaint for the day. They tried to make it fun by showing him that breathing in the mask would make a balloon inflate. Nice try!! In the end, all of us held him down and he cried into the mask. I wiped his tears, told him it was okay and watched his eyes roll back and his body relax. It only took 15 seconds or so, I'm sure. Crying probably helped. But it was sad to watch. We moved him to a good position on the bed and they ushered me out. I didn't want to be there, but it was a tender time to leave him. I probably looked worried because the nurse walking me out to the waiting room asked if I was okay. Or maybe most parents have a hard time with it. I didn't cry, but it was easy to imagine the tears coming!
I waited a few minutes, remembered that I knew things would be fine and picked up the book I brought to pass the time. I jumped at every door creak, but it was nice to think about something else while I waited. I bet it wasn't 20 minutes before the doctor came out with pictures of Carver's stomach, small intestine (right?), and esophogas. All normal. They were very pink and squishy looking. Maybe I'll scan the picture for you. Or maybe not. I'm a liberal arts major and body stuff can kinda creep me out sometimes. A few more minutes passed and the nurses came to tell me he was waking up.
He was in a new room in a small hospital bed with railings, not a crib though. He had those heart monitor stickers on, an IV on the top of his foot and was sitting up without his shirt on. He'd wanted it off in the operating room. The nurses just loved him because he woke up so suddenly. They told me he turned onto his stomach with his bum in the air and pulled his Buzz and Woody blanket over his head. He peeked out and said, "hi." What a cutie he can be! He was dizzy and still a little groggy when I came in, but he drank some apple juice and nibbled on an orange popsicle. He wasn't keen on taking out the IV, but we got it out. He really was a cutie. Several times he saw a mask hanging by the cords and whatnot and said, "all done balloon." But he didn't freak out and I promised the balloon was all done. No more mask, Carver. He wanted to keep his pjs bottoms on, but I put his t-shirt on and his crocs and he walked out with me. We sat on the boat bench and he ate his fruit snacks then I carried him to the van. And home we went!
My friend Caroline had his sisters all morning so I picked them up and made it home for some Kipper time before lunch. Not too bad! I expected him to be dizzy, but he really wasn't. He sure was when he got tubes a couple years ago! He didn't ever take a nap. I suppose even a medically induced nap counts as a nap. Darn! He's happy as a clam, good as new - well, more like every bit as grumpy as normal and getting into mischief everywhere I turn. Did I mention he likes to go outside and turn the sprinklers on right now!?
There are still biopsy results to come. Probably a week, maybe two. I expect that they'll be normal, as well. And that's fine with me! Another problem or decision sounds like a lot to deal with right now. I think they also test for allergies, which will be interesting since we have a strong family history of allergies.
Meanwhile, I have the assurance that proceeding with treatment for the rumination is all we can do. And since it seems to be a hard row to hoe, I need every bit of assurance I can get.
Wednesday, June 10, 2009
Gastroenterology
That's a mouthful, huh? And why is it called GI for short? Where's the I?! I'm assuming it's for intestinal? Anyway...
The doctor was great. Carver actually spit up a little in the office and I was able to show him before I wiped him clean. Just the classic white curdles. I felt like the doctor took us seriously, considered the implications of SPD and make an accurate diagnosis.
It's not what I wanted to hear.
It's called "rumination" and it's a VOLUNTARY regurgitation, a habit or nervous twitch in the stomach that forces food back up. I've googled it and it fits Carver perfectly. It's more common in infants and children with developmental delays/disorders, it's (sadly) often linked with a lack of attachment or the absence of a mother. But we're not going to dwell on that part because it's not our situation, right?
Carver's tendency to eat quickly and not chew well lets the food sit in his stomach longer, making it easy to regurgitate. We'll work on those as best we can.
Another recommendation was to use bio feedback, which is more a psychology technique that builds association with the habit until you can use that association to control and eliminate the habit. For example, singing the ABC song is something other families have done with each regurgitation. I'd be singing it continuously sometimes. He suggested a toy that makes noise, essentially a distraction that will take attention from the behavior and eventually replace it. I get the concept, I'm just not sure how we're going to do that exactly. He recommended a child psychologist for more help. Sometimes anxiety/anti depressants help, but he doesn't recommend that. Thank goodness!
Speaking of medication, he'll stay on his Zantac indefinitely. It doesn't help the rumination, but it will control the acid and prevent damage to his esophagus, teeth, etc... Carver doesn't mind taking it, it doesn't have negative side effects. The dose was right, so we'll be refilling that somewhere cheaper than Bartell's and trying harder not to forget.
The doctor also said that there was a 5% chance there was something else involved and said we could elect to do an endoscopy (en-DAH-scuh-pee). I still have to repeat it in my head a couple times to say it right. Anyway, it's the procedure where they send a camera inside, take pictures, biopsies and rule out any other medical, physical problem. Allergies, hernias, ulcers, etc... It's done with general anesthesia at the Children's Hospital in Seattle. We've been there with ear tubes and it's a very similar experience. It'll be half a day at the hospital for a 10 minute procedure. He couldn't recommend it necessarily and left it totally up to us. His nurse told me after he left that he's very straight forward and would've said one way or the other if it mattered to him. I liked knowing that, but I still wished he'd just decide. Then I thought about my last post and how much I believe in mothers knowing what's best for their children. And I suppose I'm grateful to be involved and respected in Carver's healthcare.
I worried and thought and second guessed all the way home. And I prayed - a LOT. I've been fasting and praying to know what to do, to get answers and to be able to help Carver. I worry a little about the anesthesia because I can't help it. But in the end, I really feel like it is a good idea to go ahead and do the endoscopy. We might not find anything, but that alone would give me the energy and focus to move forward on the rumination with no question in my mind that there might be more to it. I'm pretty sure I don't WANT to find anything else. That would just make everything more complicated.
The endoscopy is Monday morning, bright and early. I haven't gotten all the instructions yet, but I know for sure that he's not eating anything after 7 pm the night before. And I think he's on a smoothie diet the 12 hours before that. It's a good thing he likes that sort of thing, but I still anticipate a rather grumpy day.
I think we'll know some results right away, but the biopsy results will take longer and will be discussed in another office visit. I feel tired thinking of another long-term condition to overcome, but I am so grateful to KNOW. It's where everything has to start. Now I just need to focus on HOPE in the future and the courage to keep heading that direction.
The doctor was great. Carver actually spit up a little in the office and I was able to show him before I wiped him clean. Just the classic white curdles. I felt like the doctor took us seriously, considered the implications of SPD and make an accurate diagnosis.
It's not what I wanted to hear.
It's called "rumination" and it's a VOLUNTARY regurgitation, a habit or nervous twitch in the stomach that forces food back up. I've googled it and it fits Carver perfectly. It's more common in infants and children with developmental delays/disorders, it's (sadly) often linked with a lack of attachment or the absence of a mother. But we're not going to dwell on that part because it's not our situation, right?
Carver's tendency to eat quickly and not chew well lets the food sit in his stomach longer, making it easy to regurgitate. We'll work on those as best we can.
Another recommendation was to use bio feedback, which is more a psychology technique that builds association with the habit until you can use that association to control and eliminate the habit. For example, singing the ABC song is something other families have done with each regurgitation. I'd be singing it continuously sometimes. He suggested a toy that makes noise, essentially a distraction that will take attention from the behavior and eventually replace it. I get the concept, I'm just not sure how we're going to do that exactly. He recommended a child psychologist for more help. Sometimes anxiety/anti depressants help, but he doesn't recommend that. Thank goodness!
Speaking of medication, he'll stay on his Zantac indefinitely. It doesn't help the rumination, but it will control the acid and prevent damage to his esophagus, teeth, etc... Carver doesn't mind taking it, it doesn't have negative side effects. The dose was right, so we'll be refilling that somewhere cheaper than Bartell's and trying harder not to forget.
The doctor also said that there was a 5% chance there was something else involved and said we could elect to do an endoscopy (en-DAH-scuh-pee). I still have to repeat it in my head a couple times to say it right. Anyway, it's the procedure where they send a camera inside, take pictures, biopsies and rule out any other medical, physical problem. Allergies, hernias, ulcers, etc... It's done with general anesthesia at the Children's Hospital in Seattle. We've been there with ear tubes and it's a very similar experience. It'll be half a day at the hospital for a 10 minute procedure. He couldn't recommend it necessarily and left it totally up to us. His nurse told me after he left that he's very straight forward and would've said one way or the other if it mattered to him. I liked knowing that, but I still wished he'd just decide. Then I thought about my last post and how much I believe in mothers knowing what's best for their children. And I suppose I'm grateful to be involved and respected in Carver's healthcare.
I worried and thought and second guessed all the way home. And I prayed - a LOT. I've been fasting and praying to know what to do, to get answers and to be able to help Carver. I worry a little about the anesthesia because I can't help it. But in the end, I really feel like it is a good idea to go ahead and do the endoscopy. We might not find anything, but that alone would give me the energy and focus to move forward on the rumination with no question in my mind that there might be more to it. I'm pretty sure I don't WANT to find anything else. That would just make everything more complicated.
The endoscopy is Monday morning, bright and early. I haven't gotten all the instructions yet, but I know for sure that he's not eating anything after 7 pm the night before. And I think he's on a smoothie diet the 12 hours before that. It's a good thing he likes that sort of thing, but I still anticipate a rather grumpy day.
I think we'll know some results right away, but the biopsy results will take longer and will be discussed in another office visit. I feel tired thinking of another long-term condition to overcome, but I am so grateful to KNOW. It's where everything has to start. Now I just need to focus on HOPE in the future and the courage to keep heading that direction.
Thursday, June 4, 2009
Lesson #4: Mother knows best
Next week Carver will see a pediatric gastroenterologist at Children's Hospital to get to the bottom of his regurgitation. He's been "spitting up" continually since he was an infant. It was curdly milk for a while, lately it's been more acidic. I'll spare you too many details, but his chin is raw from the drool and occasionally has just terrible breath. He has also been addicted to milk/cheese/yogurt his whole life - which I think is his way to soothe his stomach. Doctors have REPEATEDLY blown me off - many different doctors. Last time she assured me that reflux would hurt, that the main symptom is stomach upset. Well, Carver's not going to be able to communicate that to me even if he realized that his stomach hurt - and I'm not sure he'd know. So I finally decided that as his mother, it's time to refer myself to a specialist. Of course, I called and made that oh-so-helpful pediatrician do the paperwork. I've talked to friends in the medical field and got some invaluable tips about other possibilities, procedures and ideas. I'm determined to see this through. If it means I break down and cry to the GI doctor next week, I'm not leaving without a plan.
It's not easy to work through referrals at this hospital, it's intimidating to go there without a full knowledge of the specialty, but I've done my research and I'm taking a list of symptoms and observations of Carver. The last mediocre doctor gave me a prescription (generic Zantac) to try and it's possibly helped the acidity of the regurgitation, but not the frequency. And I still don't feel comfortable blindly medicating what could be a more physical problem. I'll keep you posted.
I kick myself for not pushing the issue sooner, but I think I had my hands full with the rest of the sensory issues and now I've reached a plateau where I can tackle another set of problems. It reminds me of what I learned the first time around. When you know as a mother that something is wrong, you don't give up until you get the help your child needs. No good doctor should dismiss this motherly intuition, but so many do!! I just don't get that. Don't ever back down when you think something is wrong -with your child or yourself. It's worth pushing for answers!
It's not easy to work through referrals at this hospital, it's intimidating to go there without a full knowledge of the specialty, but I've done my research and I'm taking a list of symptoms and observations of Carver. The last mediocre doctor gave me a prescription (generic Zantac) to try and it's possibly helped the acidity of the regurgitation, but not the frequency. And I still don't feel comfortable blindly medicating what could be a more physical problem. I'll keep you posted.
I kick myself for not pushing the issue sooner, but I think I had my hands full with the rest of the sensory issues and now I've reached a plateau where I can tackle another set of problems. It reminds me of what I learned the first time around. When you know as a mother that something is wrong, you don't give up until you get the help your child needs. No good doctor should dismiss this motherly intuition, but so many do!! I just don't get that. Don't ever back down when you think something is wrong -with your child or yourself. It's worth pushing for answers!
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