Monday, October 28, 2019

Parenting a Child with Special Needs is Different

I 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.


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.

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."

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.

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.

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.

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.

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.

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).

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.

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.

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.

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."

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..

Special needs parents think that hospitals are a last resort - that you're more likely to get sick there than anywhere else.

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.

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.

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.

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.

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.

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.

Saturday, May 13, 2017

Pagan scouting type stuff

So....

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....

.....so we're for real on our own.

This is my plan: every weekend (because weekdays are school and weeknights are therapy), we will plan to do 4 things:  

One life skills type thing
One craft project or other creative thing
One physical activity
One Pagan "lesson" of some sort

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.


This weekend's list:

Cooking lessons are starting tomorrow morning.
We have a paint-a-horse kit waiting for tomorrow too.
This afternoon was swimming
This morning we did some drumming.


Tell me what you're doing - scouting? Something else?

Monday, August 15, 2016

And 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.

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.

Monday, May 2, 2016

Mom in the Middle

I know I said I was going to write more. Follow-through has not been my strong point lately.

There's a post over on The Mighty about being the mom in the middle - about not quite fitting into various parenting categories.

I find, these days, that there are so many middles to be in the middle of. 

I'm no longer a 'medically fragile' mom...but we're still more complicated, medically, than most kids. 

I'm now officially an 'autism' mom....but actually don't identify with the perspectives of many vocal autism parents. 

I'm a cerebral palsy mom....but my kids walk and eat and run and climb. 

I've been a heart mom...but everyone was discharged from cardiology in February, for good, with totally normal hearts.

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....

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.

Monday, October 5, 2015

I am at a loss today.

I learned that yet another trach mom I know has to face an unbearable truth: her child died.

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.

Always, it's "an accident" and "accidents happen" and they're not really liable for anything that went wrong.

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).

And these kids are fragile, and you should have expected that sooner or later, they'd die.

Except, you know, there's dying from their condition, and there's dying from a caregiver choosing to do something that leads to death.

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.

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?

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.

I hug my kids every time it happens. Because what else can you do, other than think "it could have been us."

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?

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.