So far this year, although cardiology discharged us, we've had the saga of Acorn randomly passing out (apparently it's not epilepsy, the reigning theory is vaso-vagal weirdness), Leaf's hives from hell that lasted a month the first time, and then came back 3 or 4 more times for a few days at a time, Hand Foot and Mouth disease (resulting in a febrile seizure for Leaf), and Leaf falling down the stairs and cutting open her cheek bone.
That last one is killing me - it's not healing nicely, even after 6 hours in the ER to get it stitched up (they wanted to be sure her skull and brain were intact, and there were 3 pediatric trauma calls after we got there, and at least 1 just 20 minutes before us). In fact, the cut is still wide and gappy a week later, after it took us 2 days to get the scabs melted enough to get the stitches out. The pediatrician suggested taking her back to the ER so they could drug her (again) to get the sutures out, but we were not real keen on yet another visit.
As if 2 ER visits in one weekend wasn't enough trauma for all of us. That's actually a new record.....shortest time between ER visits. Even RSV with 2 complex kids couldn't manage that.
People keep saying it's not a big deal, but the truth is, it's a huge deal. Of all her scars, this is one she can't easily cover. This is one that will be in every photograph for the foreseeable future. "If it bothers her" seems like a senseless thing to say, because of all the scars, this is the one people are going to ask about.
People comment on how beautiful she is. And I can see that coming to a screeching halt when she turns and they see this gash. Being cute has gotten my kids a lot further than they would otherwise get, because people respond to cute, and want to be near and help cute.
And even if we did take her to a plastic surgeon.....that's a whole nother round of trauma. More doctors, more surgery, more hospitals....
This never-ending cycle is exhausting.
Showing posts with label acorn. Show all posts
Showing posts with label acorn. Show all posts
Monday, August 15, 2016
Tuesday, August 18, 2015
Still here
We're still here.
It's been a long summer, and we still have several weeks before school starts, but it seems like it's nothing but drama.
Leaf's g-tube surgery went well....but then healing was hard to come by. She rejected all the sutures, and the surgical site broke open from the new wound. Nearly two months of wound care were required to get it healed - and I suppose it could look worse, but it could look better, too.
Preschool is going well. They were nervous, but she's mostly been good for them. She has a 1:1 aide working on going potty and as a general extra set of eyes, but she's not taking off running all the time because they're holding her interest. Other kids want to be her friends.
Acorn, too, is holding his own this summer. Although there have been behavior challenges, by and large they've been containable.
We've struggled with what to do with the kids on weekends. I keep thinking that I should do something Pagan-like with them, but the idea of actually planning anything gets pretty overwhelming, and then I think, well if I'm planning it for them, why not plan something for more kids, and then it spirals out of control.
As for me? I published a book (finally!). That's been quite a whirl-wind of emotion and chaos. But it also feels good to be DONE with it. What's next? Dunno, exactly, though I've been taking submissions for a children's prayer book anthology, and my goal this year has been to realize that I'm working on the universe's timeline, not my own....and that things happen when they happen.
We ran a donation drive for school supplies for foster kids on my reservation. It was a huge success, and we're hoping to do even more next year. I want to do more community stuff.
I need more sleep. I am tired all the time, and I hurt all the time - and that's not new, but it's getting worse, so it's probably time to do something about it. I finished off my Reiki Master/Teacher certification, wrote some classes on other topics....and have done nothing with them.
I really think I want to do something other than being an engineer, but being an engineer pays too well to walk away from. That's going to take some thinking.
We're meeting with Acorn's staff and his new teacher this week, to get them all trained on his communication device. We're hoping for a really good year with staff who are ready to jump in with both feet and make things happen. Maybe I can ride that energy along with them?
It's been a long summer, and we still have several weeks before school starts, but it seems like it's nothing but drama.
Leaf's g-tube surgery went well....but then healing was hard to come by. She rejected all the sutures, and the surgical site broke open from the new wound. Nearly two months of wound care were required to get it healed - and I suppose it could look worse, but it could look better, too.
Preschool is going well. They were nervous, but she's mostly been good for them. She has a 1:1 aide working on going potty and as a general extra set of eyes, but she's not taking off running all the time because they're holding her interest. Other kids want to be her friends.
Acorn, too, is holding his own this summer. Although there have been behavior challenges, by and large they've been containable.
We've struggled with what to do with the kids on weekends. I keep thinking that I should do something Pagan-like with them, but the idea of actually planning anything gets pretty overwhelming, and then I think, well if I'm planning it for them, why not plan something for more kids, and then it spirals out of control.
As for me? I published a book (finally!). That's been quite a whirl-wind of emotion and chaos. But it also feels good to be DONE with it. What's next? Dunno, exactly, though I've been taking submissions for a children's prayer book anthology, and my goal this year has been to realize that I'm working on the universe's timeline, not my own....and that things happen when they happen.
We ran a donation drive for school supplies for foster kids on my reservation. It was a huge success, and we're hoping to do even more next year. I want to do more community stuff.
I need more sleep. I am tired all the time, and I hurt all the time - and that's not new, but it's getting worse, so it's probably time to do something about it. I finished off my Reiki Master/Teacher certification, wrote some classes on other topics....and have done nothing with them.
I really think I want to do something other than being an engineer, but being an engineer pays too well to walk away from. That's going to take some thinking.
We're meeting with Acorn's staff and his new teacher this week, to get them all trained on his communication device. We're hoping for a really good year with staff who are ready to jump in with both feet and make things happen. Maybe I can ride that energy along with them?
Wednesday, April 22, 2015
Long Time, No Post
You know, I felt like things were sort of winding down. Like, without trachs, and with Leaf's g-tube on it's way out (well, ok, out this summer, but it hasn't really been used since September), that there wasn't much else to write about on this crazy journey of ours, because things were going to be "normal," or at least something approaching normal.
Except....they're not.
There are still therapies. Still IEPs (and we've added in regular behavior check-ins for Acorn with the principal and his teacher). There are still people who don't get how much work we put in every day to have Acorn be as close to fitting in as he is (people who think, "he's so close, if you just did more with him, he'd be fine.")....as if fitting in is the be-all end-all of what someone needs to be successful in their lives.
Leaf is moving from her daycare in June, to a school-based preschool (which will be part time this fall, with a few hours in the special ed preschool). Daycare is unable (or unwilling) to move her into their preschool class with kids her own age, because they can't keep track of her there. Frankly, we get a lot of complaints about how she sneaks out of the current room, with 2 adults and 8 kids. And weekly reports that her feeding tube needs to be seen by a doctor (it looks amazing, actually - a little leaking is normal, a little irritation is sometimes expected, so I don't know what their issue is). And they've been asking us to help figure out how to keep her from pulling her hair....because, you know, we're child psychologists, and no one there knows anything about how kids behave.
Leaf is talking too, though much of it is scripted and repeating things she's heard. Still...we get sentences, at appropriate times, with appropriate meanings. After all our work to get her a communication device, she doesn't need it at all, and Acorn is using hers, because the approval for his is still in progress.
Acorn, too, has made huge strides. He says hi and bye to people. He signs, "May I leave please" to be excused from the dinner table. He can, with prompts, go into his closet, pick out a shirt, put it on, pick out and put on clean underwear and pants and socks, and find his shoes and put them on.
Speaking of underwear....Acorn is, finally, by and large, potty trained, and more and more independent about going (instead of needing to be told to go) every day....including going in stores and at therapy and other public bathrooms, which was unthinkable 2 years ago. We recently discovered he had a UTI because he went on the floor, with a horrified look on his face - he hadn't gone on the floor in a couple of months, and was normally not horrified by it, but just sort of "oh well" before.
So...yeah. There's still a lot going on. There's still stuff to work out. Less complicated? Maybe...but mostly just differently complicated.
Except....they're not.
There are still therapies. Still IEPs (and we've added in regular behavior check-ins for Acorn with the principal and his teacher). There are still people who don't get how much work we put in every day to have Acorn be as close to fitting in as he is (people who think, "he's so close, if you just did more with him, he'd be fine.")....as if fitting in is the be-all end-all of what someone needs to be successful in their lives.
Leaf is moving from her daycare in June, to a school-based preschool (which will be part time this fall, with a few hours in the special ed preschool). Daycare is unable (or unwilling) to move her into their preschool class with kids her own age, because they can't keep track of her there. Frankly, we get a lot of complaints about how she sneaks out of the current room, with 2 adults and 8 kids. And weekly reports that her feeding tube needs to be seen by a doctor (it looks amazing, actually - a little leaking is normal, a little irritation is sometimes expected, so I don't know what their issue is). And they've been asking us to help figure out how to keep her from pulling her hair....because, you know, we're child psychologists, and no one there knows anything about how kids behave.
Leaf is talking too, though much of it is scripted and repeating things she's heard. Still...we get sentences, at appropriate times, with appropriate meanings. After all our work to get her a communication device, she doesn't need it at all, and Acorn is using hers, because the approval for his is still in progress.
Acorn, too, has made huge strides. He says hi and bye to people. He signs, "May I leave please" to be excused from the dinner table. He can, with prompts, go into his closet, pick out a shirt, put it on, pick out and put on clean underwear and pants and socks, and find his shoes and put them on.
Speaking of underwear....Acorn is, finally, by and large, potty trained, and more and more independent about going (instead of needing to be told to go) every day....including going in stores and at therapy and other public bathrooms, which was unthinkable 2 years ago. We recently discovered he had a UTI because he went on the floor, with a horrified look on his face - he hadn't gone on the floor in a couple of months, and was normally not horrified by it, but just sort of "oh well" before.
So...yeah. There's still a lot going on. There's still stuff to work out. Less complicated? Maybe...but mostly just differently complicated.
Wednesday, November 12, 2014
6 years
6 years ago today, Acorn got his trach.
They tell you that sometimes things happen that change your life forever - I'm never sure I believe that really, because every day changes your life forever. You're older, maybe you learned something new, whatever - every day is different, even if they often seem the same.
But his trach was, in many respects, life changing.
He survived. He thrived. I met lots of other people who I would never have otherwise even said hi too on the street - some of them have become close friends over the years. I have become a closer friend to Death than I would have thought possible.
I've learned a lot about people (both in general and in specific). Who sticks around when the shit hits the fan, who slinks out, and who hides under the desk asking if you've finished sanitizing the room yet can be surprising.
Dozens of doctors, nurses, hospital visits, and more...and I still wouldn't say our life is normal.
But I also wouldn't trade it for anything.
They tell you that sometimes things happen that change your life forever - I'm never sure I believe that really, because every day changes your life forever. You're older, maybe you learned something new, whatever - every day is different, even if they often seem the same.
But his trach was, in many respects, life changing.
He survived. He thrived. I met lots of other people who I would never have otherwise even said hi too on the street - some of them have become close friends over the years. I have become a closer friend to Death than I would have thought possible.
I've learned a lot about people (both in general and in specific). Who sticks around when the shit hits the fan, who slinks out, and who hides under the desk asking if you've finished sanitizing the room yet can be surprising.
Dozens of doctors, nurses, hospital visits, and more...and I still wouldn't say our life is normal.
But I also wouldn't trade it for anything.
Saturday, July 19, 2014
An Ending
Today is our very last nursing shift - as of this writing, there is less than an hour left. Leaf was successfully decannulated (had her trach permanently removed) on the 4th of July. Happy Independence Day indeed.
It's just as well - the continuing little issues of having nursing have reached a point of overload, and I need to have my house back, where things don't disappear or get used up without notice.
Leaf has been going to daycare 2 days a week for the last month or so, and enjoys it. They're nervous about her g-tube, but they don't have to use it, so it's all good.
Acorn is in summer school 3 mornings a week, and at daycare the rest of the time, in preparation for Kindergarten, Take 2. He's made so much progress with speaking lately, that I wonder how much he'll need the new communication device we're waiting on - it'll be needed, but he can make himself clear now with some prompting.
And everyone got new bikes this spring - Leaf got an adaptive tricycle, and Acorn got a 2-wheeler with training wheels. Acorn is not so sure about riding his bike out and about, but Leaf is very serious about riding hers. We're hoping to plan some outings with some of Acorn's school friends to encourage him to ride.
So....yeah. There's a lot of re-organizing to do, and re-arranging in Leaf's room, and supplies to be given away, but we are officially a trach free house again! Time for a celebration I think!
It's just as well - the continuing little issues of having nursing have reached a point of overload, and I need to have my house back, where things don't disappear or get used up without notice.
Leaf has been going to daycare 2 days a week for the last month or so, and enjoys it. They're nervous about her g-tube, but they don't have to use it, so it's all good.
Acorn is in summer school 3 mornings a week, and at daycare the rest of the time, in preparation for Kindergarten, Take 2. He's made so much progress with speaking lately, that I wonder how much he'll need the new communication device we're waiting on - it'll be needed, but he can make himself clear now with some prompting.
And everyone got new bikes this spring - Leaf got an adaptive tricycle, and Acorn got a 2-wheeler with training wheels. Acorn is not so sure about riding his bike out and about, but Leaf is very serious about riding hers. We're hoping to plan some outings with some of Acorn's school friends to encourage him to ride.
So....yeah. There's a lot of re-organizing to do, and re-arranging in Leaf's room, and supplies to be given away, but we are officially a trach free house again! Time for a celebration I think!
Thursday, May 8, 2014
Growing Like Weeds
A funny thing happened recently.
I realized that Acorn can now hold my hand.
Which is not to say that he didn't hold it before...but that before, he held my hand like a toddler, holding a couple fingers, his hand (and/or wrist) completely envoloped in mine. And now his hand is big enough to actually hold my hand like everyone else holds hands.
This growth thing is subtle. It's a pair of shoes that no longer fit. Pants that were too long that now aren't. Getting to be too hard to carry up the stairs when he's asleep. Words (actual words, and attempted words) coming from his mouth. Writing his name, and walking with me in some cases rather than needing to be shepherded along. Swinging on a big kid swing (and needing 2 people to get him out of a bucket swing....not doing that again!)
Leaf, too, is growing. Tall enough to pull things off the counters. Quick to get on and off furniture. Walking for blocks and blocks - a half mile or more - rather than it being a challenge for her to just get around our block. Riding a tricycle, and cracking jokes (body and potty are two very different signs, but the words sound the same....and making you say one so she can sign the other is hilarious).
Time speeds by, and sometimes I think there are not enough photographs in the world to capture everything I want to capture of them. Photos might capture the smiles, and a video might capture their giggles, but neither can capture the feeling of the world's best hugs, and neither can capture the comparison in my head of tiny preemie hands that couldn't hold the end of my finger and big kid hands that hold my hands back.
Friday, November 8, 2013
Thankful
I know a lot of people are posting something they're thankful for every day this month. I don't need to list a new thing every day, because every day I'm reminded of how lucky we are, and how thankful we should be, by two smiling faces (yes, even when they're sick, we can usually get a few smiles).
I'm thankful that my children are alive. Many go through less and are not so lucky. Many do not get to see their children grow up.
I'm thankful my children can walk. Many never do, or lose the ability to.
I'm thankful my children can eat. Even when I'm annoyed by the what and how....there are children who never develop the necessary skills to do so, and children for whom most or all foods are unsafe.
I'm thankful my children can make sounds. I'm not always thankful for the volume or pitch of those sounds, but we went so long without hearing either one's voice that I will never wish they should just shut up. Many parents I know tell me that some day I'll wish they stop talking, but I can't imagine that ever being possible. There are parents who will never hear their children's voices, and parents whose children have passed who will never hear their voices again.
I'm thankful that my children communicate at all. It has been a struggle, and we're all often frustrated, but there are others for whom communication is not so easy.
I'm thankful my children can breathe. Sometimes that's a little sketchy, but for something we all do continually, I've seen what happens when they don't breathe, and it makes me all the more aware of how lucky we are.
I'm thankful for diapers - though I'll be more thankful for potty training - their bodies work they way they should on this front, and that makes life much less complicated. Not everyone has that benefit.
I'm thankful for my children's health. I know they're not as healthy as some, and there will likely always be issues on that front, but things could be so much worse.
I'm thankful for a job that provides insurance that provides for their needs, even when I don't really feel like it meets my needs.
I'm thankful for a spouse who is involved in my children's care. I'm thankful for friends and family who accept my children as they are.
I'm thankful for loving and competent care givers - nurses, teachers, aides, and more - who make working and sleeping a little more possible.
But mostly, I'm thankful for smiles and hugs and tickle fights and bicycle rides. I'm thankful for morning snuggles and bedtime snuggles and singing and laughing.
Tuesday, September 24, 2013
Kindergarten and More
Psssst: Did you know I'm giving away The Earth Child's Handbook, Book 1 & 2, over on janetcallahan.com? Giveaway ends October 1, so go enter now!
******
Ai yi yi, what a month.
Acorn started kindergarten:
It's been quite an adjustment, all in all. New building, new rules, new people, new schedule, packing his lunch every day....but it's gone well. Acorn's aide (he has 1:1 support all day) signs, which has been a huge thing for him and for us. We're going to meet all the therapists next week, and discuss whether there need to be adjustments to his IEP.
Also, Leaf finally got AFOs, after arguing with one doc, getting SMOs that no one thought actually did what they needed to do, arguing with the doctor again, and changing doctors:
We've also had a UTI (acorn), a bout of atelectasis (Leaf), exhaustion (mama and daddy), and generally kept our heads above water. What a concept!
How's your school year going?
Friday, August 16, 2013
The Chaos of Nursing
Can I just tell you how challenging it is to have nurses here?
Have I mentioned how hard it is to keep anything and everything "weird" picked up and out of sight?
We fail at that regularly - I know, because one of our new nurses is Pagan, and we know because she decided to ask based on a few things left out here and there.
I mean...it's really really really nice to have a Pagan nurse.
Really nice. A relief.
For the first time ever, we went to Pagan Pride Day as a family (and boy did we need the extra set of hands!) - something we've never attempted before, because we were afraid to ask any of our obviously Christian nurses to go. We don't have to watch every word out of our mouths. And she's a really good nurse. Maybe not as experienced as some (she's younger than I am), but smart, on her toes, picks up after herself (a big pet peeve here of late), pays attention to Leaf's subtle signals, and has managed to gain Leaf's trust in only 5 shifts - that's a big deal.
And it's a nice thing for her too. If you can imagine working for families all the time who honestly believe that anyone who believes what you do is evil, you can guess how some of these have gone for her, even without her coming out of the broom closet.
Of course, we also know that the agency (and many current and former nurses) think we're odd. I think we're odd, at least compared to most people I know, so it's not a shock, but if that's what they think based on our carefully cleaned up home.....goodness knows what they'd think if we didn't.
Our favorite nurse is out on medical leave. We've oriented 3 new nurses in the last 6 weeks and we still have open shifts. More new nurses to come....more opportunities to scare people away.
Sigh.
Have I mentioned how hard it is to keep anything and everything "weird" picked up and out of sight?
We fail at that regularly - I know, because one of our new nurses is Pagan, and we know because she decided to ask based on a few things left out here and there.
I mean...it's really really really nice to have a Pagan nurse.
Really nice. A relief.
For the first time ever, we went to Pagan Pride Day as a family (and boy did we need the extra set of hands!) - something we've never attempted before, because we were afraid to ask any of our obviously Christian nurses to go. We don't have to watch every word out of our mouths. And she's a really good nurse. Maybe not as experienced as some (she's younger than I am), but smart, on her toes, picks up after herself (a big pet peeve here of late), pays attention to Leaf's subtle signals, and has managed to gain Leaf's trust in only 5 shifts - that's a big deal.
And it's a nice thing for her too. If you can imagine working for families all the time who honestly believe that anyone who believes what you do is evil, you can guess how some of these have gone for her, even without her coming out of the broom closet.
Of course, we also know that the agency (and many current and former nurses) think we're odd. I think we're odd, at least compared to most people I know, so it's not a shock, but if that's what they think based on our carefully cleaned up home.....goodness knows what they'd think if we didn't.
Our favorite nurse is out on medical leave. We've oriented 3 new nurses in the last 6 weeks and we still have open shifts. More new nurses to come....more opportunities to scare people away.
Sigh.
Friday, August 2, 2013
Milestones
Normally around here we talk about inchstones, but in this case, I think it's really time to use the word milestone.
Earlier this week, sitting in the waiting room for the speech therapist, Acorn got out his communication device, and from the main screen, he hit the following buttons:
Quick Talk (a page with lots of sentence starters)
I want
to eat
snacks
chips
"I want to eat chips"
A whole sentence. By himself.
When I told him we didn't have any, he said it again - several times.
Eventually, we went back to our speech therapy session and he said the same thing to the therapist. She found him some cheese puffs, and then asked for more, saying both "more" and "I want that" with his device, and with sign language, multiple times.
Hooray for breakthroughs!
Earlier this week, sitting in the waiting room for the speech therapist, Acorn got out his communication device, and from the main screen, he hit the following buttons:
Quick Talk (a page with lots of sentence starters)
I want
to eat
snacks
chips
"I want to eat chips"
A whole sentence. By himself.
When I told him we didn't have any, he said it again - several times.
Eventually, we went back to our speech therapy session and he said the same thing to the therapist. She found him some cheese puffs, and then asked for more, saying both "more" and "I want that" with his device, and with sign language, multiple times.
Hooray for breakthroughs!
Monday, July 15, 2013
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.
Friday, July 12, 2013
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.
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.
Wednesday, July 3, 2013
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.
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.
Saturday, June 15, 2013
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.
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.
Monday, May 20, 2013
Eating is Hard
Let's face it - even for very typical kids, parents put in a lot of work keeping them fed. In the beginning, it's breast or bottle (or both) and all the time and equipment and hassle either way...but by 2 or 3 most kids are pretty good about feeding themselves. Even so, there's still the preparation of food, the buying food or growing food, the trying to find things your kids will eat on their picky days (and we all have those phases and things we like and don't like).
Leaf will be 2 in less than a week. Breakfast this morning was a mashed banana in yogurt...and it took over an hour, 3 bibs, and 3 HMEs (a little barrel that goes over the trach and keeps moisture in - it's an artificial nose of sorts) to get through the meal.
Off and on, Acorn decides that instead of food, he'd prefer a carton of his high calorie formula. It's supposed to only be a supplement, and he gets one every morning for sure, but as short as he usually is on calories, it's not like we can say no. As it is, his diet is pretty limited - he rarely eats meats, and mostly sticks to carbs and veggies.
We hear from people every once in a while that kids won't starve themselves - that eventually they'll eat. Clearly those people have never met kids like mine, or kids who can't eat orally.
Leaf will be 2 in less than a week. Breakfast this morning was a mashed banana in yogurt...and it took over an hour, 3 bibs, and 3 HMEs (a little barrel that goes over the trach and keeps moisture in - it's an artificial nose of sorts) to get through the meal.
Off and on, Acorn decides that instead of food, he'd prefer a carton of his high calorie formula. It's supposed to only be a supplement, and he gets one every morning for sure, but as short as he usually is on calories, it's not like we can say no. As it is, his diet is pretty limited - he rarely eats meats, and mostly sticks to carbs and veggies.
We hear from people every once in a while that kids won't starve themselves - that eventually they'll eat. Clearly those people have never met kids like mine, or kids who can't eat orally.
Friday, May 3, 2013
Sensory Processing and Panic
When people talk about sensory processing disorder (SPD), most of the time you hear about how children need input - spinning, swinging, carrying heavy loads. And often you hear about texture sensitivities - kids who won't walk on grass, who only wear clothes made of certain materials, who think the seams in socks are painful and who find the tags in their shirts unbearable.
You hear less about auditory processing, but just as the other senses can be disjointed and dysfunctional, so to can the ability to process things a person hears.
Our current working hypothesis is that this is part of Acorn's difficulties. Especially since he follows directions well when they're given in sign language (visually) as opposed to verbally. All of our private therapists (OT, speech, psychologist) believe this, and while the school is not so keen on the idea, they agree that there are times his hearing seems off, and that directions given in sign language or using PECS or a communication device are easier for him to follow.
We've known for a long while that something was off in his hearing (though repeated hearing tests have shown normal hearing). As a small baby, his reaction to many toys that made noise was complete and utter terror. As he's grown, that's improved, but things like lawn mowers and vacuums still bother him. There are times where things you say don't seem to make sense to him, even though the same words made sense the day before.
The most amusing - or maybe most embarrassing - outcome of this is actually fairly common in kids with SPD.. More often than not, if you ask him to put on a specific article of clothing, he takes off a different article of clothing. So when the occupational therapist asks him to put on his shoes, he sometimes tries to take off his pants. She says it's a daily occurrence there, and everyone expects it, so at least we feel less crazy when it happens at home.
All of this background is so that you understand why what I'm about to relay happened, and why it was so scary for us.
Acorn does best with a very consistent schedule, because it's easier for him to know what to expect. Explaining changes to the schedule is hard, because he doesn't always process what's being said.
We needed to make up some swimming lessons he missed due to illness, and so we were going to swimming at a different time than usual, on a different day than usual.
We all told him that he and I were getting in the truck to go swimming. Instead of running for the truck, he waved "bye" to me. When prompted again, he came running, but still didn't really get it. I went and opened the truck door, and told him to come and get in, but he walked to the car, hoping to get in there instead.
I reminded him that we were taking the truck, and asked him to come over and climb into his car seat. And then I opened my door to put my bottle of tea into the cup holder.
When I turned around, he was no where in sight.
In fact, he was not in the street, not between the cars, not in front of the cars......he had vanished.
Instantly, I started to panic, though I knew he couldn't have gone far, and anyplace in the street would have still been in my line of sight (we have a corner lot, giving a lot of street to look for him in). Since he hadn't come past me, he had to be somewhere down the side of the house.
I started around the side of the house, since that wasn't in my direct line of sight, and as I walked farther from the cars, I could see him hanging out at the corner of the deck. He looked at me somewhat confused, wondering why I was calling for him.
Relieved, and also mad, I picked him up and carried him back to the truck, in hopes that we wouldn't be too late for swimming....and with me wondering again how many times this sort of thing is going to happen. He's only escaped the house once, but he's since learned to take the plastic door knob guard off the door, so it's likely only a matter of time before he escapes again. We already have rules that if we're playing outside and he runs into the street, we go in immediately. He's bolted in parking lots.
But so far, there's no real way to get it across to him that running off like this isn't a good idea.
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.
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.
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.....
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......
Friday, March 1, 2013
Babies Don't Keep
Mother, O' Mother, come shake out your cloth,
Empty the dustpan, poison the moth.
Hang out the washing, make up the bed,
Sew on a button and butter the bread.
Where is the mother whose house is so shocking?
She's up in the nursery, blissfully rocking.
Oh, I've grown as shiftless as Little Boy Blue,
Lullaby, rockaby, lullaby loo.
Dishes are waiting and bills are past due,
Pat-a-cake, darling, and peek - peekaboo.
The shopping's not done and there's nothing for stew,
And out in the yard there's a hullabaloo.
But I'm playing Kanga and this is my Roo.
Look! Aren't his eyes the most wonderful hue?
Lullaby, rockaby, lullaby loo.
The cleaning and scrubbing can wait till tomorrow,
But children grow up, as I've learned to my sorrow.
So quiet down cobwebs; Dust go to sleep!
I'm rocking my baby and babies don't keep.
~ Ruth Hulbert Hamilton
I find myself remembering this poem more and more often these days.
We're discussing Acorn going to kindergarten this fall (though his IEP will be later this month, and it's not a done deal until then). He's more than half my height (he's 3 feet 6 inches tall - pretty good for a kiddo who started out only a foot long). He's swimming, and very serious about it - and he looks so much older these days, with the thin but strong body of a little boy who plays hard, instead of the somewhat rounder look of a toddler:
And Leaf took her first step (just the one though) this week - we're hoping her new SMOs will help with that, but they're dwarfed by the velcro that holds them in place:
Even so, she's getting big too. In a year we'll be talking about transitioning from early intervention into special ed preschool. With any luck, we'll be trach free or nearly so by then, and probably talking about swimming lessons or dance class or something like that for her too.
Definitely not babies anymore...which always catches me by surprise.
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