tag:blogger.com,1999:blog-20926707871904197562024-03-14T01:36:37.006-04:00Our Little AcornPagan parenting, special needs style - one medically complex preschooler, one medically fragile toddler, lots of chaos.kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.comBlogger359125tag:blogger.com,1999:blog-2092670787190419756.post-86802683739299575342019-10-28T14:34:00.000-04:002019-10-28T14:34:11.498-04:00Parenting a Child with Special Needs is DifferentI suppose it goes without saying that parenting is different when your child isn't typical. Oh sure, there are some things that are the same....but clearly we have different priorities and experiences.<br />
<br />
<br />
When typical parents say they're exhausted, they mean they've had a couple bad nights, or maybe that they have an infant who's still up several times to be fed. <br />
<br />
Special needs parents mean they're still up multiple times a night, with their four or 6 (or 16) year old. They're waking to alarms several times, or staying up all night watching the video monitor to catch the nurse they're sure is sleeping, or listening for their child to climb out of the bed and go sneaking through the house, in hopes of catching them before they get out the front door and become one of those news stories with headlines like "Six Year Old Found Wandering on Interstate in Only a Diaper."<br />
<br />
When typical parents talk about their child's upcoming surgery, they say things like, "it's her first! how awful that she has to do this when she's so young, she's only five!" And they talk to their friends with complicated kids, telling us how they guess we get used to this sort of thing.<br />
<br />
Special needs parents know that you never really get used to sending your child to surgery. And we cringe at all the carrying on - especially when that first surgery for our friend's child comes the same week as our child's sixth or tenth or forty first, and our child is younger than theirs, and our child's procedure is something far more life-altering (or life threatening) than the tubes their child is having put in their ears, or the tonsils they're having removed.<br />
<br />
When typical parents take their child to the ER, it's full of people they don't know, lots of rushing around and lots of complaints about waiting while others are cared for.<br />
<br />
Special needs parents know the drill - we've been there too many times. We expect a wait (unless we're coming by ambulance, and even then we know there will be waiting), and come with plenty of distractions, for us and our child (and frankly, most of us don't go unless we expect to be admitted). The staff mostly know us and wave as we come through, and probably have already called ahead upstairs to tell someone to start looking for a room for us.<br />
<br />
When typical parents are in an ER or hospital, they see people in white coats come and go, asking questions and making decisions and treating their child.<br />
<br />
Special needs parents know that not everyone in a white coat is a "real" doctor - there are med students and residents, and you can tell by the cut of their coat, and we aren't really fond of taking orders from people who aren't actual doctors, so we tell residents exactly that (bonus points if you've ever made a resident cry, pass out or look like they were going to pass out, or have gotten them to whine to their attending that having you there isn't fair because you know more than them).<br />
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When typical parents have a child admitted to the hospital, you'd think based on their facebook posts that the world was ending. Their 2 night stay was the worst experience of their life. And I suppose maybe it really is the worst thing that's ever happened to them, but it's hard for most of us special needs parents to imagine a life where that's the worst.<br />
<br />
Special needs parents typically measure their hospital stays in weeks and months (and sometimes years). We know where the coffee machines are, where to park for the least cost (or how to get parking vouchers), and which cafeterias and restaurants have the least awful food. We know which "beds" (hahahaha) offered by our hospitals are the least likely to leave us unable to move in the morning. We know what the rules are to get a space at Ronald McDonald House, and we know whether it's worth trying to get a room there or whether we'd better just stay with our child.<br />
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When typical parents send their kids off to school, they have a couple of parent-teacher conferences, and maybe a few notes or phone calls through the school year. They join the PTA to be supportive of their child's school, or they don't.<br />
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Special needs parents have IEPs. If we're really lucky, we have more than one for a single child in a school year (they're supposed to be good for 3 years)....or several back to back for several children with needs. We make them write in sensory breaks, medical treatments to be done at school, goals for the school year beyond the standard curriculum. We work with aides and therapists and special teachers and more every year to help our children be successful. And then, assuming we can figure out how to stay awake long enough, we join the PTA because we figure it's better to be known by our child's classmate's parents in hopes that they'll think of our child as a real person, rather than "one of those disabled kids in that special room."<br />
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When typical parents think of someone with a complicated medical condition with lots of medications and care, they think that hospitals are probably the best place to be..<br />
<br />
Special needs parents think that hospitals are a last resort - that you're more likely to get sick there than anywhere else.<br />
<br />
When typical parents say their child is a picky eater, they mean they don't eat everything that mom or dad think they should eat, or that they claim to only eat mac & cheese and chicken nuggets. Typical parents will tell you that a child will eat if they're hungry enough, because they won't starve themselves.<br />
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Special needs parents know better - they've spent hours feeding their child, and hours in therapy hoping they'll taste one new food. They know feeding tubes. They know that some children (maybe even their own) eat only one texture or only one food, and will, in fact, starve if that's not an option.<br />
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When typical parents give birth, they hear their child cry, see their child immediately, usually hold them within a few minutes (maybe even an hour), and can room in with them during their stay. They have "take-home" babies, who go home with them a day or two later.<br />
<br />
Special needs parents often don't see their babies immediately after birth - their ears strain in vain for that first cry. It could be hours or days before they see them, and longer before they hold them. They go home while their children stay in the NICU.<br />
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When typical parents talk about their child's first words, it's with great excitement at first....but often followed quickly by complaints about their constant stream of words. More words follow seemingly effortlessly.<br />
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Special needs parents hope their child will eventually talk. Some of them wait for those first words forever. Others spend hundreds of hours and thousands of dollars on therapy to even get basic speech.kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-19839015481323536562017-05-13T19:25:00.001-04:002017-05-13T19:25:37.855-04:00Pagan scouting type stuffSo....<br />
<br />
It will cost a small fortune for us to start a SpiralScouts hearth, and it will cost even more by the 2nd year to join a local Pagan group's scouting program....<br />
<br />
.....so we're for real on our own.<br />
<br />
This is my plan: every weekend (because weekdays are school and weeknights are therapy), we will plan to do 4 things: <br />
<br />
One life skills type thing<br />
One craft project or other creative thing<br />
One physical activity<br />
One Pagan "lesson" of some sort<br />
<br />
I'm pretty sure that some weekends are not going to work. And that some weekends we're not going to get it all done. That's ok....the plan is what's important.<br />
<br />
<br />
This weekend's list:<br />
<br />
Cooking lessons are starting tomorrow morning.<br />We have a paint-a-horse kit waiting for tomorrow too.<br />
This afternoon was swimming<br />
This morning we did some drumming.<br />
<br />
<br />
Tell me what you're doing - scouting? Something else?kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-5080347230586747842016-08-15T10:00:00.000-04:002016-08-15T10:00:00.842-04:00And on and on and on and on and...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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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....<br /><br />
This never-ending cycle is exhausting.<br />
<br />kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-13078043258571490692016-05-02T12:46:00.000-04:002016-05-02T12:46:51.806-04:00Mom in the Middle<div class="" data-block="true" data-editor="4t73o" data-offset-key="bt5f0-0-0" style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 12px; line-height: 16px; white-space: pre-wrap;">
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<span data-offset-key="bt5f0-0-0">I know I said I was going to write more. Follow-through has not been my strong point lately. </span></div>
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<span data-offset-key="bt5f0-0-0">There's a post over on The Mighty about <a href="http://themighty.com/2015/08/in-between-being-a-special-needs-mom-and-a-typical-mom/">being the mom in the middle</a> - about not quite fitting into various parenting categories.</span></div>
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<span data-offset-key="bt5f0-0-0">I find, these days, that there are so many middles to be in the middle of. </span></div>
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<span data-offset-key="bt5f0-0-0">I'm no longer a 'medically fragile' mom...but we're still more complicated, medically, than most kids. </span></div>
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<span data-offset-key="bt5f0-0-0">I'm now officially an 'autism' mom....but actually don't identify with the perspectives of many vocal autism parents. </span></div>
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<span data-offset-key="bt5f0-0-0">I'm a cerebral palsy mom....but my kids walk and eat and run and climb. </span></div>
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<span data-offset-key="bt5f0-0-0">I've been a heart mom...but everyone was discharged from cardiology in February, for good, with totally normal hearts.</span></div>
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<span data-offset-key="bt5f0-0-0">I sometimes think that we're too busy drawing lines....and forgetting to treat each other as moms, each of whom has challenges - some big, some little, but all important....</span></div>
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And I wish that we'd all think about that more often. Every mom is important. Every child is important. One's challenges may be bigger than another....but a small challenge can need just as much support from our communities as a big one, depending on the circumstances. </div>
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kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-86376405242381012562015-10-05T17:08:00.001-04:002015-10-05T17:08:44.059-04:00I am at a loss today.<br />
<br />
I learned that yet another trach mom I know has to face an unbearable truth: her child died.<br />
<br />
Yet again, due to negligence. Or a nursing error. Or whatever nice words the agency and the police plan to use to explain it away.<br />
<br />
Always, it's "an accident" and "accidents happen" and they're not really liable for anything that went wrong.<br />
<br />
Except, you know, they are. Nurses are licensed professionals. The agency is covered by insurance, and licensed and accredited. They are supposed to be the help that families of complex kids need - it's not like we can take a child with a trach to a mainstream daycare (they'll tell you their license and insurance don't cover that kind of care, and they aren't trained).<br />
<br />
And these kids are fragile, and you should have expected that sooner or later, they'd die.<br />
<br />
Except, you know, there's dying from their condition, and there's dying from a caregiver choosing to do something that leads to death.<br />
<br />
But what you find out over time is that not all of those nurses have as much training on trachs and ventilators and feeding pumps as parents are required to have to take their child home. That their training in meds is not always what you'd hope (like the lady we had who charted that she'd given both an albuterol inhaler, and a nebulizer, in the same 1 hour period). That their understanding of the job is less than you'd expect - like the ones who think working nights means they get to come to work at your house and sleep, instead of monitoring your child while you sleep.<br />
<br />
And if you can't trust these professionals who are sent to your home to be helpful, and to care for your child.....who can you trust?<br />
<br />
I'm weary. We've been trach free for good for about 15 months now, and I've left most of the groups that are trach related because I can only handle so much drama. But....these things travel back to me, and we're there all over again.<br />
<br />
I hug my kids every time it happens. Because what else can you do, other than think "it could have been us."kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-49260951940737692592015-08-18T20:11:00.001-04:002015-08-18T20:11:35.820-04:00Still hereWe're still here.<br />
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It's been a long summer, and we still have several weeks before school starts, but it seems like it's nothing but drama.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Acorn, too, is holding his own this summer. Although there have been behavior challenges, by and large they've been containable.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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?kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-31767212218474963042015-04-22T12:47:00.003-04:002015-04-22T12:47:26.578-04:00Long Time, No PostYou 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.<br />
<br />
Except....they're not.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
So...yeah. There's still a lot going on. There's still stuff to work out. Less complicated? Maybe...but mostly just differently complicated.kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-25271779222551335272014-11-12T14:11:00.003-05:002014-11-12T14:11:59.170-05:006 years6 years ago today, Acorn got his trach.<br />
<br />
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.<br />
<br />
But his trach was, in many respects, life changing.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Dozens of doctors, nurses, hospital visits, and more...and I still wouldn't say our life is normal.<br />
<br />
But I also wouldn't trade it for anything.kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-14359329085257757422014-07-19T13:58:00.000-04:002014-07-19T13:58:01.020-04:00An EndingToday 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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!kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-22039256190548802732014-05-25T11:12:00.001-04:002014-05-25T11:12:23.499-04:00Birthday<div class="separator" style="clear: both; text-align: center;">
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Today is Leaf's 3rd birthday. We've come a long way.</div>
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For Mother's Day, her early intervention specialist helped her make the card above, with the poem about how we may be tired of cleaning up handprints, but someday we'll look back and realize how small they were.</div>
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I always have mixed feelings about that poem - they have<i> no idea </i>how small her handprints were 3 years ago. Her whole hand was the size of a quarter - now, finger to wrist, her hand is the size of my palm, which is not small at all. Her arms and legs were about the size of 2 of her fingers now put together. Her whole body would have fit in her bike helmet, and her shoes now are longer than her torso was then.</div>
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We are cleared for an attempt at decannulation at some point this summer, depending on schedules. She's getting an adaptive tricycle in a few weeks courtesy of her therapists and the hospital. She's signing and babbling and getting a communication device.</div>
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And she's clearly 3. The attitude shows.</div>
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So, Happy Birthday, Leaf - you're bigger than you were, but you've got a long way to go before you're grown up. I suspect it's going to go by faster than any of us expect. :)</div>
kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com1tag:blogger.com,1999:blog-2092670787190419756.post-3619473358772312872014-05-08T09:00:00.000-04:002014-05-08T09:00:01.495-04:00Growing Like WeedsA funny thing happened recently.
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I realized that Acorn can now hold my hand.
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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.
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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!)
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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).
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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.kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-55587858402633698122014-01-09T08:00:00.000-05:002014-01-09T08:00:00.962-05:00What You Shouldn't Do For Parents With Special Needs Children There are <a href="http://preemiemomblog.blogspot.com/p/what-can-i-do-for-my-friend.html">plenty</a> of <a href="http://www.familylife.com/articles/topics/parenting/challenges/special-needs-child/10-ways-to-help-parents-of-children-with-special-needs#.Us3qOZ5dWfY">posts</a> out <a href="http://www.sheknows.com/parenting/articles/1004097/when-families-fail-parents-of-children-with-special-needs">there</a> on <a href="http://anearlystart.wordpress.com/supporting-a-preemie-family/">how</a> to <a href="http://www.huffingtonpost.com/maria-lin/special-needs-parents_b_1338169.html">help</a> (or at <a href="http://commonhealth.wbur.org/2011/06/insensitive-remarks-preemies">least</a> not <a href="http://www.sheknows.com/parenting/articles/1004097/when-families-fail-parents-of-children-with-special-needs">offend</a>) <a href="http://www.preemie-l.org/advice.html">families</a> <a href="http://www.theupsideofdowns.org/support/helping-parents-of-children-with-special-needs">dealing</a> with a <a href="http://ywamassociates.com/news-and-articles/responding-to-a-friend-or-family-in-a-medical-crisis/">medical</a> <a href="http://www.takethemameal.com/blog/19-ways-to-help-during-crisis.php">crisis</a>.<br />
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Can I give you some advice though? Sometimes, it seems people get hung up on their perception of what families need, instead of what they actually need. And if you're on the outside looking in (and that includes grandparents), you don't know the whole story, and it's never <i>your </i>story - it's about the child, not about you. It may be challenging for you as a friend or family member, but you'll never grasp the magnitude of how challenging it is for the parents, and the child's needs come before your wants or your comfort.<br />
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So let's talk about perceptions.<br />
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When you think about your friend or relative who now has a child with special needs, do you think, "oh, their house is always a wreck" or "that mom doesn't dress as nice as she used to or take care of herself the way she used to," or "they don't ever go out and they used to go out every week," or some other critique of how life has changed?<br />
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Sure, maybe they're depressed - it's very common in families with complicated kids. But, first and foremost, their priorities have changed. I know in our house, the bee-bee-beep beep beep of the pulse ox is going to come before anything else, even if it means burning dinner.<br />
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Don't assume you know what the problem is if you're not talking with them, asking how things are going, and being a part of their life.<br />
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Most parents in this situation find that of the many many people who say they will help when asked are never heard from again. Whether they don't know what to do, or are afraid, or embarrased....we never know, we just know that all our good friends no longer are interested in spending time with us. We get that our lives are complicated, that we have less time than we used to, that we often cancel unexpectedly....but that doesn't really seem like the sort of thing that should impact a friendship when we have a good reason for all of that.<br />
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Want to help them?<br />
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Don't ask what sort of book you should get them, or how to drag them to therapy.<br />
Don't ask other parents what your loved one needs.<br />
Don't think it's about you.<br />
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Here's the thing: If you want to help, do something, don't just stand there.<br />
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Show up.<br />
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Wash the dishes, clean the toilets, or whatever else you see that needs to be done.<br />
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Show up.<br />
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Ask about the medical things you need to learn to babysit. If they have other kids, take them to the park, or swimming, or whatever.<br />
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Show up.<br />
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Interact with their child with special needs - sure, you may suck at it in the beginning, but they're still a child.<br />
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Show up.<br />
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Bring dinner. Arrange to bring dinner to the hospital, or something that can go in the freezer at home for a day when time to cook goes poof. Call and say you're on your way and ask if you can pick up anything from the grocery store.<br />
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Show up.<br />
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Are you seeing a trend here?kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com2tag:blogger.com,1999:blog-2092670787190419756.post-51808599278941372542013-12-16T15:59:00.003-05:002013-12-16T15:59:42.191-05:00It's ComplicatedThis weekend Leaf has been in the hospital. We originally figured she had a little cold that was setting off other issues, but our lovely little girl managed to show no virus activity from her swabs....not the first time she's done that and still been very sick, so whatever.<br />
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The thing is...this sort of experience always make me grieve for others, not so much for us.<br />
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We know Leaf will get better in a couple days. We're pretty sure we'll be able to get her trach out in the spring. She walks, she signs, even if she's not talking yet. She's still eating partly by tube, but making progress. Cognitively, she appears to be just fine.<br />
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Acorn too, improves each week. He can ride a bike (with training wheels) and write his name. He can do puzzles like a pro, which is new this month. School is going well, with a few bumps, and they believe he's quite smart, that he grasps phonics, that he might be reading some words.<br />
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But we have friends who are not blessed this way. Friends whose children will always have trachs and feeding tubes. Friends whose children will never walk or talk. Friends whose children will likely need life long care, for as long as their lives are. Friends whose children face "life limiting" conditions (the polite way of saying that they will die before their parents do). Friends whose children have been through more than twice as many surgeries as my two combined, and who still have many more to go.<br />
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It's all about perspective, and it's a complicated way of looking at the world.kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-46639852852576149812013-12-09T09:00:00.000-05:002013-12-09T09:00:00.526-05:00When Accessibility is an Afterthought<div class="separator" style="clear: both; text-align: center;">
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Yesterday we went to a local Pagan event, held at a nearby city's community center.<br />
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The event was exactly as described - lots of cookies on tables, walk around and fill your box of cookies. The cookies have so far been very tasty, and the money raised is going towards funding a building for the local Pagan community, which will be quite welcome.<br />
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What was unexpected was the method of getting to the room that the organizers found themselves in:<br />
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Yes, that is our double stroller, exactly as long as the elevator is wide, and almost as wide as it was deep. There was not room for 2 adults in the elevator with the stroller - in fact, it was a challenge for me to push the button myself once we were wedged in there.<br />
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You know, I get that we're a little strange taking the kids so many places, and that the fact that my 5 year old is often in a stroller is a bit strange too (though if you'd ever chased him through a mall, or had him bolt in a parking lot, you'd totally get why he's there).<br />
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But I wonder how many people besides us have found this elevator challenging?<br />
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It was clearly put in sometime after the building was built.And I suppose it's better than nothing. But still....kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-34786014963160818112013-11-25T08:30:00.000-05:002013-11-25T08:30:01.463-05:00Parents and VIllages and PagansLots of thoughts this week about how Pagan groups accept (or don't) the children of their members, and how that plays out at festivals.
We are not at a point in our house where attending events regularly is doable in any sense of the word. But even if it were, I suspect we'd avoid most groups and events for the foreseeable future because of the way that most groups handle children.<br />
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There are basically 3 ways Pagan groups and events handle children. (1) No children, (2) Children are allowed if they can follow an adult standard of behavior that parents are expected to police, (3) Your kids, your problem - you want to let them run loose, great, if not, you figure out how to keep them under control. There are a very few places that offer some sort of childcare, and when they do, it's usually organized by a parent.<br />
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Festival wise, I have a hard time justifying spending several hundred dollars to attend a weekend festival where I'll be lucky to participate in more than 2-3 scheduled events. If my husband and I each take a shift with both children so the other one can have a child free shift, and then we each take a shift with each of the children to do something fun with them independently, that's 4 shifts, and by the time you add in meals and a super early bedtime for Acorn, and that's probably most of the day.<br />
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Additionally, it's not like my children are old enough for me to leave them in a tent asleep while my husband and I do something fun after dark, so evening things are basically out, unless we each take a night solo (and really....what's the fun in that?).<br />
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This even boils over into teaching - because if I use one of my slots of time with no children to teach, then I really have very limited time to enjoy the rest of the event.<br />
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Even with childcare...we're probably still in that sort of spot, though Acorn could probably manage childcare if they were prepared for him (though given the difficulties finding him a babysitter, I'm guessing that most places still wouldn't keep him). Some places assume a more laissez faire, free range sort of child policy, and my kids are just not safe that way at this point - I desperately wish that they were, but to practice free range parenting your child has to be able (and willing) to consider the best course of action, and Acorn is not there yet - and Leaf is too young to expect that.<br />
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For local ritual groups, the same situation would apply either I have to find someone to babysit, or I have to find a way to convince my children to be still and quiet at all times, and to only act appropriately....and let's just say we're not there yet.
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I wish more Pagan groups would get on with realizing that parents can still be active members with the right support, and that children aren't an annoyance to put in the closet.<br />
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I strongly suggest that you read <a href="http://www.amazon.com/gp/product/B009S8UBT0/ref=as_li_ss_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B009S8UBT0&linkCode=as2&tag=paganshopcom-20">Don't Leave Your Friends Behind</a><img alt="" border="0" height="1" src="http://ir-na.amazon-adsystem.com/e/ir?t=paganshopcom-20&l=as2&o=1&a=B009S8UBT0" style="border: none !important; margin: 0px !important;" width="1" />, which is a book about parenting and social justice movements if you're interested in other ideas for how we could do better for families. (that's an affiliate link, by the way).kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-17914211898296313482013-11-15T09:00:00.000-05:002013-11-15T09:00:01.651-05:00Beyond Special Needs 101I'm feeling, lately, like there are 2 types of special needs support groups out there - the ones that take all comers (or at least, all those with the appropriate condition) where the new folks ask the same questions over and over and over again - even if there's a FAQ or "start here" page - and the ones that are...more mature. The families who've been at it a while eventually congregate in other communities, where the lines between conditions are more fuzzy, and the focus is more on practical day in and day out things.<br />
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While those groups that those new families find first are useful...I feel lately like I'm putting far more into them than I'm getting out of them. There are so many things we have done...and the things that are new to us are generally not things that families who are new to this special needs life really are going to know about.<br />
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It's not likely that we'll ever be a completely typical family - some of the kids' needs are going to continue indefinitely. But I'm thinking it's time to take a break from many of the groups I've been a part of for the last few years. Maybe I'll go back sometime.kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-9718370237388531192013-11-08T09:00:00.001-05:002013-11-08T09:00:00.394-05:00ThankfulI 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).
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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.
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I'm thankful my children can walk. Many never do, or lose the ability to.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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I'm thankful for loving and competent care givers - nurses, teachers, aides, and more - who make working and sleeping a little more possible.
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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.kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-61996382140508921002013-10-08T07:00:00.000-04:002013-10-10T09:42:38.978-04:00Technology Speaks<!-- START TOP CODE --><strong>Welcome to the October 2013 Carnival of Natural Parenting: Kids and Technology</strong><br />
<em>This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by <a href="http://codenamemama.com/2013/10/08/5-ways-extend-screen-time/" target="_blank">Code Name: Mama</a> and <a href="http://www.hobomama.com/2013/10/raising-kids-who-love-tv.html" target="_blank">Hobo Mama</a>. This month our participants have written about their families' policies on screen time.</em><br />
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More than most families, technology is a central facet of our lives.<br />
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We have oxygen machines.<br />
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Machines that breathe when they can't.<br />
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Machines to suck out the mucous when a child can't blow their nose or cough it up.<br />
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Pumps to feed children through tubes in their bellies.<br />
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Machines to keep track of oxygen saturations and heart rate.<br />
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And we've agreed that we aren't about to let these things get in the way of our attachment to our children. We've worn them while carrying oxygen and feeding pumps. We've even occasionally (gasp!) Co-slept with a ventilator. <br />
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To be fair, we also watch a lot of videos - video helps with Acorn's comprehension, because he's so visually oriented and struggles with receptive language. They're part of our anti-anxiety routine for doctors visits and part of how we're learning sign language. More videos than I would ever have agreed to years ago. We're picky, though, in terms of what we watch.<br />
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But sometimes technology can bring us closer. The new gadget in our lives lets my son talk to us - to anyone.<br />
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While most parents rejoice in a child's first words, they still take them for granted. They expect words to come pouring out of their child, and eventually they start focusing on teaching them not to talk unless it's the right time or place. They learn to talk, and then to read and to write and to type, the flow of words moving faster and faster.<br />
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Communication is part of what makes us human. Communication binds us together. While sign language has served us well...Acorn's fine motor skills are not keeping up with his need to tell us what he's thinking.<br />
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To learn to use this device, we've spent a lot of time playing video games on tablets and phones - working those fine motor skills such as they are, finding their limits, and then trying to push further. Learning how to navigate tablets with their taps and swipes and different screens. Learning that touching different spots makes the device do different things....make noises, move, talk.<br />
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This isn't the sort of decision we make lightly, but we know Acorn has a lot to say, and it's nice to give him the opportunity to speak his mind.<br />
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And it doesn't hurt that there's less complaining at dinner when he can ask for exactly what he wants.</div>
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<a href="http://codenamemama.com/carnival-of-natural-parenting/#carnatpar" target="_blank" title="Carnival of Natural Parenting"><img align="right" alt="Carnival of Natural Parenting -- Hobo Mama and Code Name: Mama" border="0" class="alignright" src="http://i233.photobucket.com/albums/ee159/lintpicker/CNPnaturalparent.jpg" /></a>Visit <a href="http://codenamemama.com/carnival-of-natural-parenting/#carnatpar" target="_blank"><strong>Code Name: Mama</strong></a> and <a href="http://www.hobomama.com/p/carnival-of-natural-parenting.html" target="_blank"><strong>Hobo Mama</strong></a> to find out how you can participate in the next Carnival of Natural Parenting!<br />
Please take time to read the submissions by the other carnival participants (list will be updated throughout the day on October 8):<br />
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<li><strong><a href="http://www.hybridrastamama.com/2013/10/technology-taken-away-childhood.html" target="_blank">Has Technology Taken Away Childhood?</a></strong> — Jennifer at <strong>Hybrid Rasta Mama</strong> worries that technology is intruding on the basic premise of childhood - active play in all forms! Join her as she takes a brief look at how play has changed as technology becomes more integrated into the daily lives of our children.</li>
<li><strong><a href="http://jennifermcmillin.blogspot.com/2013/10/fostering-healthy-relationship-technology.html" target="_blank">Fostering a Healthy Relationship with Technology</a></strong> — Jenn at <strong>Adventures Down Under</strong> describes her children's love of screen time and how her family implements their philosophy and policies on technology.</li>
<li><strong><a href="http://http//crunchyconservativemommy.blogspot.com/2013/10/kids-chores-for-tech-privileges.html" target="_blank">Kids Chores for Tech Privileges</a></strong> — <strong>Crunchy Con Mommy </strong>shares how tying chore completion to iPad privileges worked in her house to limit screen time and inspire voluntary room cleaning!</li>
<li><strong><a href="http://sustainable-mum.blogspot.com/2013/10/screens.html" target="_blank">Screens</a></strong> — Without the benefit of her own experience, <strong>sustainablemum</strong> explains her family's use of technology in their home.</li>
<li><strong><a href="http://bangerlm.blogspot.com/2013/10/screen-time-battle-of-ideologies.html" target="_blank">Screen Time - The Battle of Ideologies</a></strong> — Laura from <strong>Laura's Blog</strong> explains why she is a mom who prioritizes outdoor natural play for her kids but also lets them have ample screen time.</li>
<li><strong><a href="http://raisingarevolution.tumblr.com/post/63454461808/october2013-blogcarnival-technology" target="_blank">The Day My iPhone Died</a></strong> — Revolution Momma at <strong>Raising a Revolution</strong> questions the role technology plays in her life when she is devastated after losing her phone's picture collection from her daughter's first year.</li>
<li><strong><a href="http://www.meegs1982.com/2013/10/finding-our-technological-balance.html" target="_blank">Finding our Technological Balance</a></strong> — Meegs at <strong>A New Day</strong> talks about how she finds balance between wanting her daughter to enjoy all the amazing technology available to her, without it overwhelming the natural parenting she's striving for.</li>
<li><strong><a href="http://www.hobomama.com/2013/10/raising-kids-who-love-tv.html" target="_blank">Raising kids who love TV</a></strong> — Lauren at <strong>Hobo Mama</strong> sometimes fears what children who love screentime will grow up to be … until she realizes they'll be just like her.</li>
<li><strong><a href="http://www.togetherwalking.com/1/post/2013/10/no-limits-on-screen-time-is-that-natural.html" target="_blank">No Limits on Screen Time? Is that Natural?</a></strong> — Susan at <strong>Together Walking</strong> shares misconceptions and benefits of having no limits on technology and screen time in their home.</li>
<li><strong><a href="http://www.mommajorje.com/2013/10/screen-time.html" target="_blank">Screen Time</a></strong> — Jorje of <strong>Momma Jorje</strong> shares what is currently working (and what hasn't) regarding screen time in her household.</li>
<li><strong><a href="http://livingmontessorinow.com/2013/10/08/positive-use-of-technology-with-kids/" target="_blank">Positive Use of Technology with Kids</a></strong> — Deb Chitwood at <strong>Living Montessori Now</strong> tells about her family's experiences with early technology, shares helpful resources from around the blogosphere, and speculates on what she'd do as a parent with young children today.</li>
<li><strong><a href="http://your-fonder-heart.blogspot.com/2013/10/why-i-will-never-quit-you-tv-ready.html" target="_blank">why i will never quit you, TV</a></strong> — How Emma of <strong>Your Fonder Heart</strong> came to terms with the fact that screen time is happening, and what balance looks like between real and virtual life for both her toddler AND herself.</li>
<li><strong><a href="http://www.ourlittleacorn.com/2013/10/technology-speaks.html" target="_blank">Technology Speaks</a></strong> — Janet at <strong>Our Little Acorn</strong> finds many uses for technology - including giving her child a voice.</li>
<li><strong><a href="http://codenamemama.com/2013/10/08/5-ways-extend-screen-time/" target="_blank">5 Ways to Extend Children's Screen Time into Creative Learning Opportunities </a></strong>— Looking for a way to balance screen time with other fun learning experiences? Dionna at <strong>Code Name: Mama</strong> shares 5 fun ways to take your child's love of favorite shows or video games and turn them into creative educational activities.</li>
<li><strong><a href="http://friendly-encounters.blogspot.co.uk/2013/10/what-parents-can-learn-about-technology.html" target="_blank">What parents can learn about technology from teachers</a></strong> — Douglas Blane at <strong>Friendly Encounters</strong> discusses how technology in schools enhances children's learning, and where to find out more.</li>
<li><strong><a href="http://www.blogger.com/blogger.g?blogID=2092670787190419756#" target="_blank">5 Tips for a Peaceful Home</a></strong> — Megan of the Boho Mama and author at <strong>Natural Parents Network</strong> shares her favorite 5 tips for creating a peaceful home environment.</li>
<li><strong><a href="http://www.citykidshomeschooling.com/2013/10/technology-and-natural-learning.html" target="_blank">Technology and Natural Learning</a></strong> — Kerry at <strong>City Kids Homeschooling</strong> writes about the importance of technology as a tool for natural, self-directed learning.</li>
<li><strong><a href="http://www.jananas.com/babies-and-technology/" target="_blank">Babies and Technology</a></strong> — <strong>Jana Falls</strong> shares how her family has coped, changed their use of, relied on, and stopped using various forms of technology since their little man arrived on the scene</li>
<li><strong><a href="http://her.joshandrosemary.com/blog/kids-and-technology/" target="_blank">Kids and Technology</a></strong> — Rosemary at <strong>Rosmarinus Officinalis</strong> talks about the benefits of using technology with her preschooler, and includes a few of their favorite resources.</li>
<li><strong><a href="http://wp.me/p2L387-1H6" target="_blank">Using Technology to Your Advantage: Helping Children Find Balance</a></strong> — At <strong>Living Peacefully with Children</strong>, Mandy discusses how technology can be used or abused and gives a few tips to help children learn balance.</li>
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<!-- END BOTTOM STRAIGHT LIST CODE --!> kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com6tag:blogger.com,1999:blog-2092670787190419756.post-443190430742057442013-09-24T19:20:00.001-04:002013-09-24T19:20:24.118-04:00Kindergarten and More<div dir="ltr">
<b>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!</b></div>
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Ai yi yi, what a month. </div>
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Acorn started kindergarten:</div>
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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.</div>
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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:</div>
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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!</div>
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How's your school year going?</div>
kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-75704612514307181002013-09-02T14:33:00.003-04:002013-09-02T14:33:52.945-04:00We Know Too Much<i>I had something else in mind for today, with school starting tomorrow and all, but it's been a rough couple weeks amongst our special needs friends. We'll get back to school stuff later...</i><br />
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*****<br />
<br />
We know too much.<br />
<br />
We know that every surgery has risks, and we know people who've seen them first hand.<br />
<br />
We know that surgery is sometimes (more often than we'd like) our only option.<br />
<br />
We know that an ominous silence after someone posts "heading to the hospital" isn't good.<br />
<br />
We know when a friend says they're taking their child to the emergency room whether it's likely to be a short stay or not, based on the issues presented.<br />
<br />
We know, because we know them and their child, whether that stay might mean not coming home at all.<br />
<br />
We know that those blog posts with cryptic titles usually mean nothing good.<br />
<br />
We know which ER to go to in our area, based on what we need and what doctor our children need to see.<br />
<div>
<br /></div>
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We know that we often know as much about our children's specific issues as the doctors who care for them.<br />
<br />
We know that as a group, moms and dads of children with medical issues are often smarter than doctors.<br />
<br />
We know more than the EMTs who come when we call 911.<br />
<br />
We know that the nurses who work in our homes are a blessing and a curse.<br />
<br />
We know that hospital nurses likely don't know much about some of the things that are our daily lives.<br />
<br />
We know what many diseases entail, even if our children don't have them, and we weep with friends when their children are diagnosed, because we know how the story will end.<br />
<br />
We know that doctors are people too - they're not gods, they make mistakes, and they don't know everything.</div>
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kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-69008751373500392752013-08-16T21:03:00.002-04:002013-08-16T21:03:43.257-04:00The Chaos of NursingCan I just tell you how challenging it is to have nurses here?<br />
<br />
Have I mentioned how hard it is to keep anything and everything "weird" picked up and out of sight?<br />
<br />
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.<br />
<br />
I mean...it's really really really nice to have a Pagan nurse.<br />
<br />
Really nice. A relief.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
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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.<br />
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Sigh.kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com0tag:blogger.com,1999:blog-2092670787190419756.post-46987516249429395942013-08-02T10:00:00.000-04:002013-08-02T10:00:00.868-04:00MilestonesNormally around here we talk about inchstones, but in this case, I think it's really time to use the word milestone.<br />
<br />
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:<br />
<br />
Quick Talk (a page with lots of sentence starters)<br />
I want<br />
to eat<br />
snacks<br />
chips<br />
<br />
"I want to eat chips"<br />
<br />
A whole sentence. By himself. <br />
<br />
When I told him we didn't have any, he said it again - several times.<br />
<br />
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.<br />
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Hooray for breakthroughs!kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com1tag:blogger.com,1999:blog-2092670787190419756.post-85936670727994684672013-07-26T10:00:00.000-04:002013-07-26T10:00:00.131-04:00PerfectOn one of the groups I'm a part of, a mom asked when we knew that our children would have special needs, and one of the responses from another mom was that her child was perfect until the day she was born. I know this mother loves her daughter greatly...but that struck a chord with me.<br />
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At our worst with Acorn, during the one point in his life that there really was fear that he would not survive, I asked a good friend what we would do if the doctors couldn't "fix" him. The friend told me that I shouldn't think in terms of Acorn being broken - sure, not everything was quite up to spec, but if I started thinking that way, I wouldn't be able to celebrate his successes.<br />
<br />
And that's true. Over time, I've come to see both Acorn and Leaf as perfect - just like every other child is perfect, no matter what challenges they face. There may be parts of them that don't work the same as most people.....but all of us have things that make us unique.<br />
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Even so, we're still perfect. They're still perfect. Their special needs and disabilities don't take away from that perfection.kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com1tag:blogger.com,1999:blog-2092670787190419756.post-32631340581132760192013-07-19T10:08:00.000-04:002013-07-19T10:08:00.122-04:00Pagan kids and our religious freedomsI've been thinking about this topic for a bit after running across an out of print book this past week, titled <i>Pagan Child: A Handbook for Teachers, Carers, Childminders, and All Those Involved in Looking After the Children of Pagan Parents</i> by Dee Weardale. This book was published in the mid-90s in the UK, just a couple of years before I found Pagan folks at college and learned that there were other options when it came to religion.<br />
<br />
<a href="http://www.ourlittleacorn.com/2011/07/our-life-in-fishbowl.html">I've talked before</a> about the challenges we face when it comes to caregivers. Clearly, though, I'm not the only person who has wondered about your run of the mill daycare and our kids.<br />
<br />
Around here, a fairly sizeable percentage of daycares and preschools are run by Christian churches. It's an obvious choice for them - if they're big enough to have classrooms for their Sunday School programs, they've got those rooms sitting largely unused all week.<br />
<br />
Our current daycare for Acorn did ask about our faith - the owner ran across one of my blogs. But she was respectful, and it has never come up again. Our previous daycare, however, told me at one point that they "do a Christmas program, with traditional songs and stuff" and that they planned to continue to do so, because "we don't have anyone here who objects." Which I guess is code for "everyone here is nominally Christian or afraid to say otherwise."<br />
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But that does leave me wondering - in some areas, it's likely that church-based centers are the only option (or the only affordable option, which is a totally different post for another day). Even all of the small centers I interviewed that advertised themselves as being "green" or "organic" turned out to be heavily Christian based - some even using pre-packaged Christian curriculums, even though that wasn't mentioned in their ads at all. So even here, with one of the largest Muslim populations outside of the Middle East, along with sizeable populations from all corners of the globe, daycares that aren't Christian are hard to find, and are so much the norm that they don't see a need to mention it.<br />
<br />
Actually...it's somewhat interesting that both our local Hindu temple and one of our Mosques here in our small suburb have Montessori based preschools....<br />
<br />
So...what should daycare providers know about our kids? Mine aren't likely to say anything that might cause a stir anytime soon, but I bet yours talk about holidays and witches and that sort of thing once in a while.kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com3tag:blogger.com,1999:blog-2092670787190419756.post-92005370812655234482013-07-16T10:28:00.001-04:002013-07-16T10:28:16.818-04:00Feeding Tubes Aren't EvilHave you seen <a href="http://youtu.be/z6ACE-BBPRs" target="">this video</a> going around of Mos Def having a Guantanamo Bay style feeding tube put in?<br />
<br />
Have you read any of the <a href="http://www.latimes.com/news/opinion/editorials/la-ed-force-feeding-guantanamo-bay-prisoners-20130714,0,7123352.story">stories </a>in the <a href="http://www.policymic.com/articles/39395/guantanamo-bay-hunger-strikes-will-force-fed-prisoners-push-congress-to-close-the-prison">news</a> going on and on about how awful and disgusting the process is in relation to the Guantanamo Bay situation?<br />
<br />
Do you remember Kathie Lee and Hoda<a href="http://www.today.com/id/29054368/#47061122"> talking about the feeding tube diet fad last year </a>(fast forward to about 5:11 into the video)?<br />
<br />
Feeding tubes are a useful tool when used appropriately. NG tubes *can* be traumatic to put in. But the media keeps leaving out one important thing: many adults and children (like mine) are alive because of feeding tubes.<br />
<br />
I really wish the media could separate "feeding tube" and "reason it's being used."<br />
<br />
Then again, that's true of a lot of things in the media these days....kadierahttp://www.blogger.com/profile/03303473037288003918noreply@blogger.com1