“When I was a baby…”

So. Last night, Teddy was sleepy and asking me in a sleepy voice to tell him about when he was a baby. What else did I do when I was a baby? (It started when he asked me when we got his IV pole.) So this led to lots of discussion about his infancy. Most of which is depressing. Every third thing I said was that he really liked to snuggle, but he didn’t want to hear that over and over, so we talked about hospital, and dialysis, and Nurse Jen, and Dr Jetton, and driving to Iowa City, and taking baths, and getting his tube, and getting other tubes and getting them out. We looked at pictures on my phone. 80% of which are in the hospital. And we talked about a lot of non hospital stuff, like that he loved Genna and would just stare at her all day. But man, so much of his life happened in the hospital. Heck, my favorite Funny Teddy moments are all medical-related. And it’s fine. It’s his life. I need to get past always feeling sad about his early years because I don’t want him to feel sad about them.
So today we’ve received another packet from the government about Teddy (it’s related to Medicaid). “How has this disability affected your life?” Also, I have less than an inch of space to answer that question.
How HASN’T being born with renal failure affected his life? I mean… there isn’t a single aspect of his life TODAY that isn’t directly impacted by that. Developmental delays. Sensory processing disorder. Eating. Balance and body awareness issues. sleep. speech issues. adhd. cognitive issues. anxiety. motor delays. Well, OK. The heart defect and the subglottic stenosis aren’t likely related. Do you suppose “in every way” would suffice? I don’t even understand this question – isn’t the nature of disability such that it affects your life fairly completely? Especially if you’re born with it? It’s like saying “how has being Caucasian affected your life?”

Croup, apnea, and hearing

Soooo… in my ongoing effort to keep this blog a place where I can go to remember T’s personal history, while also keeping friends/family current, here is an update.

T’s been getting croup every month since May. May, June, July, and August were all mild enough to only require a few days of prednisone but not ER. They mostly started in the MORNING, which means I can get on top of it with pred before night. (And yes, croup is actually worse at night, your body’s natural levels of something I’ve forgotten the name of lower at night, and that lets croup get worse. Will be discussing with God in the future.)

About Oct 10, I allowed myself to observe (in my head, not out loud, I’m not THAT stupid) that he hadn’t had croup in September. Oct 20, he had the worst croup episode to date. *note to self: never notice anything ever again*

This is from my Facebook: “So. This morning. T woke up at 5ish with a slightly stridory cough. I thought ‘I will need to remember pred before bed tonight.’ About a minute later, ‘no, pred right now.’ Went potty, came back, he was REALLY struggling to breathe and decided on er. Halfway to hospital, I decided I wished we had called 911. We got to er 15/20min after he woke up with the slight cough. O2 of 70 with a doc standing by to intubate.”

That is how fast he can crash with croup.  (struggling to breathe: retractions at collarbone and ribs, drooling, unable to sit or stand, coughing with every inhale.  Then halfway to hospital, he stopped coughing. He couldn’t.)

And when I say “doc standing by,” I mean, the doctor brought a chair and sat at the foot of the bed. Out of the way of the nurses and RTs, but RIGHT THERE. For an hour or so.

And then as I run down to the bathroom after he’s stable to a) pee and b) have a moment, I pass the doc quietly saying to another doctor that that was scary. Ha. Then he came back in to tell me “that was a pretty significant episode of croup.” I think he could see the crazy in my eyes that told him I was already well aware of that.

The thing about airways, especially in kids, or so I am told, is that they’re fine until they’re not. Even once we got his airway open enough to get his sats up, he was still NPO for several hours just in case, because having an open airway at that moment still wasn’t any guarantee that he wouldn’t suddenly collapse.

So, back to otolaryngology we go. Fortunately, we already had an appointment with them because his apnea’s been markedly worse lately, and the monthly croup plus worsening apnea seemed to be related/concerning, plus the whole Teddy-cant-pass-a-hearing-test thing. Does he need tubes again? Does he need hearing aids? I’m tired of being put off by local docs, I want this solved. (detectable fluid in ears doesn’t seem to be evident every time he doesn’t pass a hearing test, so…) So we’re seeing audiology and oto in January, which was the soonest they could get us in.

PCIT experiences

I’ve heard good things about PCIT from others. Evidently it’s all about having a great provider. We did not have a great provider. I’m not sure there are any great providers in central Iowa.

The first phase involves learning to play with your kid. I read through the rules and thought, “yeah, isn’t that how you play with a kid?” but now I’m in a few groups on FB where people are trying PCIT and it’s all new to them, so maybe not. Basically, do you what they’re doing. You don’t direct, you follow. You copy, you repeat what they say, you observe aloud what they’re doing. And you don’t ask questions.

Our provider assumed I’d have a hard time with this, because I homeschool. Evidently homeschool moms just can’t stop teaching, ever.

And to a certain extent, she was right. I ask questions. Kid says “What is that?” I’m not going to answer with what it is, especially if I know they know. I answer “What do you think?” Because that’s also good parenting.

But what kept me from “passing” was a) not enough of each of these things (observing, repeating, etc) in the first 5 minutes after we arrived – when he was mostly walking around the room getting settled in. Hard to repeat their words when they aren’t talking.  and b) asking questions – because when I can’t understand him, which I often couldn’t at the time we were doing it, I guess at what he said but I ASK it. PCIT wants to you state it definitively. But that is completely counter to best practices with communication difficulties – I’m not going to assume I can speak for my child. If I don’t fully understand him, I’ll take a stab at it, but I won’t TELL HIM what he told me. That’s rude, plus it just makes him mad. “blee do”  “Do you want Playdough?”  will elicit an agreeable “yes” or “no” from him.   “You want playdough” will result in angry “NO!” and immediate frustration. NOT MY GOAL.

So fine. I was having a hard time passing, but I contend that the standards were silly.

But what made us quit was the next part.

The next part, you move to giving the child orders and enforcing consequences for not doing as told. First consequence, the time out chair. Child must sit for a certain amount of time, still and quiet. If they talk, the time starts over. If they continue to not “obey” in the time out chair, then they go into the punishment closet, which they call something else. It’s a small room where the child is placed, alone, for a period of time.

So, knowing Teddy as I do, I know how this will go down. He can’t sit still and quiet. He just isn’t  capable. So he’ll refuse to do something, then will be unable – due to a neurological condition – to sit still and quiet.

And like hell I’m locking him in a tiny closet for that. Just no.

Teddy Eating: Guess What, I have a good handle on it.

Conditions that must be present for Teddy to eat:
– Food he can handle
– A calm environment
– An environment without pressure
– A distraction
– No interruptions

Take one of these away, no eating.

I’m working on eating when away from home. It’s a struggle. Consider your typical gathering with several families eating a meal. You have:

  • Lots of noise
  • pressure to eat (eating is expected)
  • A NOT calm environment
  • Lots of interruptions

I can usually manage at larger gatherings for meals if I can take him into a different room with just us and his Kindle, if I can ward others off.

But otherwise, eating just isn’t going to happen. And that’s frustrating. It’s a skill I’m working on with him. I don’t make a big deal out of it. I don’t demand everyone adjust their lives to suit him – that isn’t very realistic. I see how he does with everyone in the same room, and if that isn’t working, I see if I can move him somewhere else quieter and with fewer interruptions/bad distractions.

Do I wish he didn’t have these requirements? Sure. I wish he would just eat like a regular kid. But wishing doesn’t make it happen, unfortunately.

Disaster Planning for Special Needs Families, part 3

Now let’s talk about PLANS.

First. This first bit is general stuff for any family. Now, while there is no emergency, think through four places you can go and meet up with others in your family. Think of one location in your neighborhood. Another location outside of your neighborhood but in your town. Another location outside of your town/vicinity but in your state. And another location outside your state. Friends’ or family members’ houses are ideal, but nearly any place will work. Obviously, you will want to choose locations based on how they may be able to accommodate your special needs. Planning to meet up at Aunt Susie’s place isn’t a great plan if your family member uses a wheelchair if Aunt Susie lives in a 5th floor walkup apartment.

Communicate all of these places with everyone in your family. In the event there is an emergency and you are unable to communicate with others in your family, you just follow the plan. If the emergency affects just your house, you know to meet up at your neighborhood spot. If the emergency affects your neighborhood, you know to meet up at your town spot. If the emergency is more widespread, you meet up at one of the other locations.

Now, here’s the special needs part. Think through ANY special considerations involving your special needs family member. What if your family member uses a wheelchair, but the family member who isn’t at home has the accessible van? What if you anticipate that your family member would melt down if an evacuation were necessary? What if your family member has severe anxiety about leaving the house? How will you handle these things? Have a plan NOW so you don’t have to come up with one on the fly.

Bonus points: write down these plans and put them in your binder.


Second. Communications. In many emergencies, local communications can quickly become overwhelmed. But sometimes, though you can’t connect a call across town, you can still call out of your area. Establish a friend or family member who doesn’t live in your area who can serve as a communications hub for your family. Then have everyone MEMORIZE this number.   Also: write it in your binder.


Third. Predicted Emergencies. In the event of any sort of predicted emergency (hurricane, civil unrest, major ice storm), remember that your family is not like other families. Your family has special considerations. Think through those special considerations NOW.

For example, in my family, if there was a major ice storm predicted, or if we lived in an area expecting flooding, I’d need to check to make sure we have enough medication on-hand and, if not, contact the pharmacy and ask them to work it out with the insurance company to let us refill early just in case.

When Teddy was on dialysis, we knew we’d need to report to the hospital (2 hours away) in the event of any major power loss, which might have meant that we’d plan to travel sooner rather than later if a major winter storm was predicted.

If your special needs family member is dependent upon electricity to survive, maybe you need to think about installing a generator (and keeping sufficient fuel safely stored). Or perhaps you need to consider evacuating your home to someplace with more stable power in advance of any predicted emergency. (For example, many families in Orlando move into Disney hotels during hurricanes.)

Sometimes, the best course of action for a special needs family is to get out of dodge sooner rather than later. This is a VERY tough call to make, but if you have some place you can go, and you can get there without too much hassle, it might just be best to get out before the emergency hits.

Look at Harvey – I absolutely understand why people didn’t evacuate, and I think that, all things considered, it was the best decision for most people, even though it didn’t work out so great in retrospect. But families with special considerations might have decided to leave a few days in advance of the storm – just in case. Is this always going to be possible? No. But if it is possible… maybe it’s best to go.

I read a story about having to rescue several dozen pediatric dialysis patients from their homes for dialysis before not getting dialysis killed any of them – the national guard and coast guard helicoptered them to the hospital. I’ve had friends get stuck at home in snow and ice storms and start to panic about getting their kids dialysis. And I get it – I’m not judging those families, at all. I can’t say I’d have done anything different (of course, we were already IN the hospital for the vast majority of Teddy’s days on dialysis…). Making the decision to leave is HARD, and it seems SO silly when nobody else is leaving, and when there may not even be a storm, and even if there is, it probably won’t be that bad. But, if possible, getting out early might be the easiest course of action when it all comes down to it.

I’d sure as heck rather be laughing at my very cautious self while spending a few days with an out of town friend than be stuck in my home in a panic about my special needs family member.

Disaster Planning for Special Needs Families, part 2

Now let’s talk about… THINGS

Get out some paper. At the top of one page, write, “Things Needed To Stay Alive.” Take a minute and write down all the things your special needs family member needs in order to stay alive that go beyond everyday needs. (For example, if your family member eats orally and can eat relatively normal foods, you don’t need to write this down.) Our list includes medications, feeding pump supplies, and baby food for the tube. (He gets a blended diet at home, but access to fresh fruits and meats plus a quality blender, cooking supplies, etc., seems a bit much to manage during an emergency, so we plan to fall back on baby food.)  Perhaps your family member needs a ventilator, or a CPAP, or catheters.

On another page, write “Things Needed To Function Well.” On this page, write down everything that your special needs family member won’t actually die without, but that will make everything go more smoothly. Our list includes a few special toys, a weighted blanket, playdough (portable and helps keep his hands from being destructive), and the kindle/charger. Perhaps your family member needs a nightlight, or a particular “thing” that soothes them. Or maybe you don’t *NEED* a piece of medical equipment to survive, but having it would be better than not having it – I have our manual blood pressure cuff on this list, as well. His pressures are stable enough that during an emergency, I could probably get by without it, but I’d feel better having it.

Now, look at list #1. Can you make a “go kit” for your special needs person that includes these items? Chances are good that you can include SOME, but not all. I can put feeding pump supplies and syringes into a bag, but I can’t pack away the pump or his meds. Pack 10 days’ worth of whatever items you CAN pack away into a special (roomy) bag that is used JUST for this purpose

Then, type up what is left on your two lists – start with “needed to live,” and move on to “would be nice.” Include quantities for what you’d need for ten days. Type “IN CASE OF EMERGENCY” at the top. Print this list in a largeish font size. Attach this list (laminate it if you can) to your bag.

Note that I say TEN days here. The people at ready.gov recommend that “go bags” have three days of supplies. But your special needs family member *requires these things to survive* and also *you can’t usually buy replacements or easily acquire them at shelters.*

I know you think you’ll remember this stuff. But sometimes in the press of a major disaster, things you think you will remember go right out the window. You’ve already done all the thinking now, when you’re calm. During the emergency, just look at the bag, start at the top, and fill it with what’s on your list.

(Then consider making more general “go bags” for everyone in your family, with clothes, food, and supplies for 3 days.)


Disaster Planning For Special Needs Families

Disaster planning is something EVERY family should do. EVERY FAMILY. This isn’t just for preppers. Have a plan for when something goes wrong. Here. https://www.ready.gov/make-a-plan

Special/Medical needs families have an even more pressing need to have a WRITTEN and UPDATED disaster plan. Because we need things you can’t buy in stores. We need things that the Red Cross won’t have. Sometimes, our kids will die if we don’t have the right things.

I’m going to walk you through three parts of disaster planning here, with special needs families in mind:
1. Papers
2. Things
3. Plans

Today’s installment… papers.

BUT let’s first talk about what a disaster is. A disaster could be a hurricane. Or a wildfire. Or an F5 tornado. Or an Earthquake. A chemical spill. Could be a housefire. Or leaking gas pipe in your home. Civil unrest. A car accident 100 miles from home. A large political crisis that impacts transportation (like 9/11 or a nationwide trucking issue).

But when we’re making disaster plans, we’re preparing for the WORST. If you have plans for the worst-case scenario, scaling those plans back to accommodate smaller scale disasters is easy.

So, STEP ONE. Think of the worst disaster you are likely to encounter in your area. Where I live, I rank large scale tornado as the MOST likely scenario.

Now, let’s talk…


Yes, with our fancy electronic gadgets, we hardly ever need paper any more. But if you’ve evacuated your home and are stuck somewhere with no internet or no power, you might want some paper copies of important documents. Consult Ready.gov or other blogs and resources for general paperwork needs, but for special needs families, you’ll want:
– Copies of insurance cards
– Printed out list of current medications and supplies (with Ref numbers if applicable)
– Printed out list of current diagnoses
– Doctors’ names and phone numbers. Yes, you probably have these memorized, but you’ll want them on paper also because, well, what if you’re not available?
– A mind dump of things that are important for others to know about your special needs family member, organized by topic.   “Sleep. X sleeps only when in a dark room with white noise and a weighted blanket.”  “Eating. X can only eat the following textures.”  Because, again, what if you aren’t there?
– Anything else you can think of that is unique to your situation that might be nice to have on paper.

Now, what to do with these papers? Buy yourself a three-ring binder and a pencil pouch. Print all this stuff out, three-hole punch it, and keep it in the binder, along with some loose-leaf paper and a few pencils in the pencil pouch. Label it clearly. Show it to everyone who is involved in your special needs family member’s life, and show them where you keep it. Keep it somewhere handy and accessible. I keep ours near our back exit. You might decide to keep yours with the rest of your medical supplies.

And, this is important, REFUSE TO FEEL SILLY ABOUT THIS. This isn’t silly. This is smart. Smart families plan ahead, and this is even more important when you have someone in your family who isn’t typical.