How Hard Can You Push? (or: Managing Doctor Relationships)

Advocacy for yourself and your child in a medical setting can be very difficult.

Last week, I spent a chunk of time on the phone with a friend whose child, unbeknownst to me, has been experiencing serious medical problems for quite some time now. This friend is beyond frustrated, and listening to her tell me what has been happening, I was frustrated for her.

They are in a situation where the specialist they are seeing isn’t really doing anything for her child. The child is experiencing major medical issues resulting in a greatly diminished quality of life. It’s been going on for a long time, and the doctor is stuck in “wait and see,” “let’s keep an eye on it,” and “wait for another specialist who can’t see you for a year.” It’s honestly unacceptable at this point.

She asked how hard she can push with a doctor.

And I hope that my thoughts on this were helpful to her, and I hope they’ll be helpful to you.

Before I get into the details, the short answer is this: As hard as you need to. But they also can refuse to ever see you again. But that’s not necessarily a bad thing.

The truth of the matter is, it really comes down to how you want to handle this relationship going forward. Is this a relationship you NEED? (How easily replaceable is this doctor?) Is this a relationship you want to preserve? Is this a doctor who’s really gone to bat for your kid, and you’re dealing with an unusual bump in the road, or has this doctor not done anything for your kid and has resisted you at every turn?

How you want this relationship to go is really the determining factor in how hard you can push. If you’re not sure – ask yourself this: If this next appointment doesn’t yield (the specific thing you have been pushing for), do you care if you ever see this doctor again? (To give an example from my own life, we reached this point with a specialist in T’s life. This doctor was literally the only one of his specialty in town, and I’d already met the other doctors of this specialty in the state and they weren’t amazing, so this doctor was my only shot. But he had disappointed us in several areas, and then messed up in kind of a big way. And I had reached a point where he was either going to kick it into gear, or he wasn’t worth the effort.)

If this is a relationship you are strongly motivated to maintain, then you need a gentler approach – but you can still stand up for your child, you can still insist that your questions get answered, etc.

If you’ve reached the point where you’re ready to walk if the doctor doesn’t bring any value, then you can push as hard as you need to. Stay polite. Don’t raise your voice. Stay reasonable. Plan out in advance how you want the conversation to go (at least this helps me) so that you stay on topic. But go after you goal like dog after a bone. You don’t need to be meek. You don’t need to defer to the doctor just because they have a degree. You can stay polite but still be forthright and blunt.

Use declarative statements. Ask questions. Tell them you don’t understand. (By which I mean, for example, “We are not going to pursue x treatment, as I said during our last appointment. We need to discuss alternatives. Can you explain to me why you’re so reluctant to discuss x, y, or z alternatives? I don’t understand why this hospital is unwilling to consider a treatment that is used by (name drop a large hospital that utilizes this treatment). Can you explain to me why, in your opinion, this treatment is inappropriate? I would like a referral to x hospital to discuss this alternative option with their team – can you help us with that, or do we need to pursue it on our own?”) As with any good “debate,” don’t let yourself get sidetracked by other topics. “Can we discuss that after we finish talking about x?”

I’m reading over those questions, and realizing that this is how I talk to doctors all the time anyway, but the difference is phrasing and tone. In every day conversation, I’m casual. The questions are asked with a curious voice. “We’ve talked about switching to x drug a few times, but you don’t seem like that’s a route you really want to take. I know x hospital uses this drug as a standard therapy, can you help me understand why this isn’t something you want to do in this case?”

In THIS case, when you’re at the end of your rope, the questions are less curious and more insistent. Less asking and more insisting.

And at this point, your doctor can get on board, or they can stonewall (in which case, it’s well past time to move on), or they can be polite to your face and send you a letter firing you from their clinic.

But if they’re not offering you any value, you’re better off never seeing them again, anyway, so if you’re 100% comfortable with the possibility that this is the last time you’ll ever see this doctor… go for it.

Guide to Surviving The Holidays With Your Special Needs (OR ANY) Child

Last year, I talked to so many special needs parents who were experiencing frustrating, disappointing holiday seasons. I’m willing to bet that their children weren’t any happier.

So how can we avoid this?

Let’s discuss.

Rethink your expectations.

Your holiday isn’t going to fit your mental ideals. Yes, you may dream of re-creating the Christmases of your childhood – or of creating the Christmas you wish you had as a child – but, especially if your child isn’t a typical child, that might not be very realistic. Create a holiday celebration for the child you DO have, not for the typical child you WISH you had.

Perhaps having wrapped presents under the tree in the days leading up to Christmas is your ideal, but you have a child with ADHD and major impulsiveness issues. If not “ruining the surprise” is important to you, keep those presents well hidden until the children are asleep on Christmas Eve.

Or perhaps your child with anxiety just really falls apart over the idea of having surprises. My youngest doesn’t prefer to be surprised by presents, especially when he knows far in advance that there will be gifts. For his birthday this last year, I just ended up telling him what some of his presents were – he was surprisingly fine with waiting to see them on his birthday, and knowing what was waiting for him helped him be excited instead of anxious.

How can you change your expectations, or what new traditions can you create, that truly help your special needs child enjoy him or herself?

Rethink Social and Family Obligations

Raise your hand if your special needs child LOVES holiday get-togethers and exhibits perfect behavior? Have your hand up? Skip this section. And yay. Truly.

For the rest of us, whose children get overstimulated, whose children hate crowds and noise, etc. – rethink those holiday obligations. All of them. The school party, the church service, the work parties, the friend gatherings, the family gatherings. How many do you really HAVE to go to? For family things can you consolidate or alternate? (We’ll go to the Smith family for Thanksgiving and the Jones family for Christmas, or We’ll go to the Big Family Thing this year, but next year we’re staying home.)

Or, how can you make those gatherings better? Can you limit the time you spend? Is it better for your child if you go somewhere, so you can leave as needed, or is it better for you to host so that your child can be in familiar surroundings?

And, of course, the perennial “my family knows my child is immune suppressed but showed up obviously sick anyway.” Don’t be afraid to leave. You aren’t obligated to stay at a gathering where the other attendants can’t respect your needs, assuming you’ve made them clear.

Get Family To Rethink Their Expectations

Yeah, this is tricky. Because many families prefer to pretend that they have only typical children in their family, and don’t want to acknowledge whatever difficulties your child or children may have. If you can get family on board, great. Explain your child’s difficulties (not their diagnosis, but their struggles) and how family can help. “Johnny really struggles with physical contact – you can really help with this by giving him space. He may not want to hug you, or sit next to you. It’s not personal, he just isn’t comfortable with touch.”   “Rose gets overstimulated easily with all the lights, noise, and goings-on. We’re going to bring her headphones and she might need to take quiet breaks in another room – if you notice she’s stepped away, just let her have her space. She’ll rejoin us when she’s ready.”

Good communication in advance is usually helpful here.

What if Family Doesn’t Care?

But let’s say your family is like many, and they don’t care. (Or don’t seem to care.) The good news is, you don’t have to get your family on board to still take care of your child. Pack a bag of coping skills – physical and mental. Bring whatever helps your kid. Playdough. Weighted lap pad or blanket. Headphones. Electronic Device. Books. Toys. And when you notice your kid is ready for a break, or starting to lose it, just whisk him or her off to your pre-scouted quiet area for a little one on one time until he or she is ready to rejoin the group. No explanations necessary.

Your kid not going to eat what everyone else is eating? Bring food for them. Your kid not going to eat, period? Whatever. Don’t sweat it. (I have kids who just couldn’t eat when they were hyped up with excitement, quite apart from the tube feeder.)

You don’t need anyone else’s buy-in to take care of your kids.

“But!” you say. “BUT!! The mean looks, the rude comments!”  Whose children are these? Not Aunt Susie’s. Yours. Mean looks, you can ignore. Rude comments, you can ignore or address. You’re going to have to play that one by ear. I don’t engage. I ignore, I purposefully misunderstand, I deflect with humor, I change the subject, or I leave the area. Experience has shown me that engaging isn’t worth the effort. But some people have great luck engaging in polite, educational conversation.

If you think your relative/relatives might actually be interested, chat away!

Inappropriate Presents

This can be tricky. Bear in mind that nobody HAS to buy you or your kid a present. Ever. In advance, if your child has particular needs, you can lay the groundwork for good gift ideas. “Hey, you might have noticed that Sam struggles with gross motor skills. I know you bought a bike for the other kids at this age, but Sam is still probably a few years away from being able to pedal successfully – he would, however, really have a lot of fun with .”    One year, I just let family know that Teddy was developmentally still several years behind peers, and in particular with fine motor skills, so he wouldn’t be able to use things like puzzles that require fine motor skills, and if they had any questions about the appropriateness of a gift, just to ask and I’d be happy to help.

But what if your kids get gifts that just don’t work? They can’t eat much orally, and they were given candy. They can’t hold a pencil and they were given coloring books. In general, the only appropriate response to a gift is “thank you.” Even if, even if, even if.  You may disagree, that’s fine. But in my opinion, being rude doesn’t solve anything. Say thank you and move on.

What if the gift giver asked for ideas and then got something else? Say thank you and move on.

What if the gift giver knows that the recipient literally cannot use whatever the gift is? This appears trickier than I think it really is. Think about the gift giver. Are they clueless, do they have difficulties themselves, or are they just mean? Clueless and difficulties can be forgiven – it really is the thought that counts, even with our special kids. Meanness – well, that’s really up to the individual to decide how to handle, and how you handle it will depend on your long term goals for that relationship.

 

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 and 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 reach home or your home has been affected, and you cannot 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 Hurricane 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.

Part 1: Papers

Part 2: Things

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 food for the tube (baby food or Real Food Blends will work here.)  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. Consider storing your binder that you made in Part One in this bag, as well.

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 easily buy replacements or 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.)

Part 1: Papers

Part 3: Plans

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…

PAPERS

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 to add:
– 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.

 

Part 2: Things

Part 3: Plans

Tips for Families planning a Make A Wish trip to Disneyworld

When we were planning our trip, I couldn’t find much online specifically aimed at families taking a Wish trip to Disneyworld. So many of the regular Disney planning things don’t pertain to Wish families, but I had so many questions about the things that would be unique to our trip. Hopefully, this document at least partially addresses that hole. 🙂

What our Wish trip included:

Travel there, travel back, and 5 days of park tickets. (3 Disneyworld, 2 Universal, 1 SeaWorld) You can also typically request one or two special things – we requested tickets to Mickey’s Not So Scary Halloween Party. They say it’s a week trip (7 days), but it’s really just 6 nights with 2 travel days and 5 days to enjoy the trip.

We got a rental car – a van, actually. Some families instead made use of the Mears shuttle service. The car rental included carseats, but we brought our own for Teddy. We used their booster, which was clean and seemed nearly new.

We stayed at Give Kids the World Village, which includes free meals.

There are also a plethora of other tickets available for other experiences and places in the area – you’ll be given a list at checkin. Plan for check-in to take a few hours. Yeah.

This is an excellent resource for planning. It’s the GKTW Village Guide. It has a lot of details in it.  And this is their pre-trip section of their website.

You’ll also want to join the DISboards, and look in their disABILITIES section for lots of great info on Disney with disabilities, health problems, and Wish trips.

DisneyWorld:

Our Wish trip included 3 days of park hopper passes to Disney parks. This is not enough to see everything, so don’t try. Seriously don’t try. Also, Do *not* just show up at Disneyworld without a plan. Get a guidebook or at the very least read some websites to get a good sense of what is there and what you want to see and do. Make note of any time-sensitive plans you might have (parades, fireworks, other shows).

Your Wish trip includes a Genie pass – it’s a pass with Genie on it. This pass is your golden ticket. It plus your Make a Wish buttons and/or GKTW Village button gets you into every Fastpass line, and lets you bypass lines at Character greetings. This means that you can make your plans to ride certain rides without any concern for crowd levels, expected wait times, etc. You don’t need to worry about Fastpass reservations. Just pick what you want to do and go do it.

You’ll also notice, hopefully, that your Wish buttons typically get you better character experiences. Not always, but generally, we noticed the characters spent more time with our kids when they knew we were there with MAW. Sometimes, they shut down the line and let our kids have a little while in the room alone with the characters. Sometimes, they pulled other characters for group pictures (which NEVER HAPPENS outside of a Wish). It was awesome, and the character interactions were probably the highlight of the trip.

If you’re going to see a parade or fireworks, get there early. 30 minutes at least, an hour at least if you’re there during more crowded times. If you see people starting to line up for the parade – find your spot!

You also get a free Photopass CD. Use the Photopass photographers as much as you can (but then also have them take pictures with your camera, or take your own pictures – some of the photopass pictures are very disappointing). Find out before you go about Magic Shots – I totally forgot and am kind of mad at myself. 🙂

Universal Studios:

The “standard” wish trip includes 2 day park hopper passes to Universal Studios/Islands of Adventure. Universal is not a great place for the smaller kids. Teddy had two rides he could do, total in two parks, and one of those he got to do only because the employees were very very kind. He’s no 36 inches tall, even with shoes on. They knew it and I knew it. (But we were on a Wish trip and they let it slide.) It is great for older kids. Like, Wally is 10 and big for his age, and could ride everything and likes thrill rides – he was the only kid who really enjoyed Universal. That said, the treatment at Universal is amazing. The pass for Universal gets you a personal escort from the ride entrance around through back entrances and directly onto the ride. (Disney, you still have to wait a few minutes because you’re in the Fastpass line – Universal is really front-of-the-line access.) Universal also has very very few rides that don’t get you some degree of wet – from sopping wet to just a bit spit on. I don’t enjoy that at all.

We did get to meet several characters, which the kids loved, and we had a lovely lunch at Circus McGurkus.

Again, it’s not a good idea to show up without a plan, but we largely did Universal without a plan (because we totally ignored the plan we had) and it was OK. Lots of wasted time, though. Also, never split up and leave your cell phone with the other adult in your party. Finding your husband and other 2 kids is a great way to waste a few hours at Universal. 🙂

Sea World:

Sea World. OK, I have no issues with animals in captivity. But sea world was dirty and their employees were about what you’d expect for, I don’t know, our local theme park. The experience here just wasn’t as good. The pass you have gets you into their “fastpass” line, whatever it’s called, but that doesn’t really amount for much – or didn’t while we were there.

Give Kids The World Village:

The house that you stay in at GKTW is nice. It’s a duplex, and though we could sometimes hear our neighbors, we didn’t hear them often. The kitchen includes a full size fridge/freezer, a cooktop, a microwave, coffeemaker, blender, toaster, and dishwasher. There’s no housekeeping during your stay, but you don’t have to clean when you leave. There’s also a washer and dryer and free detergent (it’s Tide). Bathtub, shower, two bathrooms. Dressers. Super nice.

A Present Fairy visits every day with fun little presents. Some are kind of junky, some are awesome.

The pool is nice – zero-entry and they have PVC wheelchairs available for use.

The village has all sorts of fun things – characters come for greetings, there are organized activities, there are fun places to visit, a carousel, etc. Some of the activities and whatnot are really amazing, and some are kind of… awkwardly not amazing. But it’s fun!

The food is free with your meal card. The food from Katie’s Kitchen for lunch is REALLY REALLY good. The rest of the food is OK. The express breakfast is not so great, lol, but the breakfast at the Gingerbread house is pretty good. They had good grits and fresh waffles. 🙂 And there’s free ice cream basically all the time. And there’s pizza delivery.

General Tips:

All the parks have bag check. Don’t settle in for the day at the park until you’ve passed bag check. In other words, carry your bags until you get through bag check.

I have a unique way of packing our bags that made things much easier on us. I use a bag within bags system that makes finding things faster and easier. Our big backpack we left in the stroller at all times, and I carabinered it to the stroller to make it harder to steal. Inside was a large bag (the medium wetbag here) full of diapers, diaper cream, wipes, and changing pad. Once through Bag Check, this bag went into the seatback pocket on the stroller for easy access. It was also carabinered in. Then also in the big backpack were a series of both the medium and the small wet bags: one for rags, one for First Aid items (bandaids, advil, Shout wipes, Bodyglide, moleskin, sunscreen), one for Entertainment (coloring books and crayons, bubbles, glow wands), etc.  I also brought the ipod in a waterproof case to which I attached a leash and a carabiner so I could clip it to the stroller. Sometimes T needs to chill out with the ipod, and I’m ok with that, but I didn’t want him dropping it. (I also had a carabiner leash for the sippy cup, and a few other leashes that came in handy for stuffed animals. 🙂 )   I also packed a smaller backpack that I never took off. It contained my money, my phone, and Teddy’s food and meds in a small lunchbag. DO NOT leave anything you can’t afford to lose in your parked stroller.

This was our stroller. Giant carabiner there on the left, to hold misc items. Bag with diapers in it behind the seat (mickey bag). The other seat back held the fan and our daily plans. The panda bear is a stroller lock. We rented a stroller from Orlando Stroller rather than using the park strollers that we could have rented for free with our Wish buttons. The rented stroller is more comfortable, reclines, and has storage. It was worth the money. You can also see the cheap children’s watch I zip tied to the stroller. We don’t wear watches, this was easier that getting out phones. Also I made a stroller tag (picture of McQueen with Teddy’s Stroller printed out and laminated) that I zip tied to the handle – both to allow us to easily identify our stroller, as well as to prevent anyone else from accidentally taking our stroller.

I did most of T’s diaper changes in the stroller. Found an empty corner, situated ourselves so nobody could see, and did it. Cleaner than changing tables in bathrooms.

I bought a stroller fan and it was the best money I’ve ever spent. It’s actually not a stroller fan, but a larger clip-on fan. We only used it for a few hours every day (in October), but it was NICE TO HAVE.

The best thing I did was print out maps of the parks in advance. For Disney parks I used Kenny the Pirate’s maps (Google him). They’re clear and better drawn than the official maps. And they have the name of each attraction written ON the attraction on the map, so you don’t have to use an annoying key. Then I circled the things we wanted to do, made note of any time-sensitive plans we had, and wrote down anything else I thought important… then laminated them. 🙂   A page protector would work just as well. Those maps were awesome.

Meals: Some days we wanted to leave GKTW before they were open for breakfast. Most days, we did not come back for lunch. A few times, we didn’t make it back for dinner. Walmart is just down the road – we stopped and picked up easy breakfast foods (instant oatmeal and frozen breakfast sandwiches), sandwich fixin’s, chips (for Teddy), granola bars, cheese sticks, and GoGurts. And a case of bottled water. I froze most of the water. Every day, I packed Teddy’s cooler with his meds and food and an ice pack. And I also packed a Family cooler, with 2 frozen water bottles, a sandwich for everyone who eats orally, GoGurts, and cheese sticks. I also packed granola bars in the backpack. We pulled out the granola for midmorning snacks, had our sandwiches for lunch, snacked on chips or nuts or bought snacks in the afternoon, and bought dinner if we weren’t back at the Village. Bringing lunch cut down on our expenses and also gave the kids some “normal” food to eat. I do wish I’d done more planning for snacks and dinners, though – we ended up eating some pretty crappy foods. 🙂

We started out each day with 6 water bottles: 2 from the fridge, 2 frozen in the cooler, and 2 frozen and just loose in the backpack. This wasn’t nearly enough, we still bought drinks, but it was a good start.

While I’m talking about meals – we did want to have dinner at one of the restaurants at EPCOT. Most of the restaurants are buffet-style. Teddy, as a transplant recipient, cannot eat from buffets. (Of course he barely eats orally anyway, but he does chew on some foods and we like him to participate in mealtime with us.) When making advance dining reservations at Disney restaurants (and, I assume, Universal ones), there is a place to mark if you have food allergy concerns. Our concerns were not with allergies, but there wasn’t a “my kid can’t eat off the buffet” option, so I selected that. When we arrived, the chef came out to talk me, and I explained the problem, and she said it was not a problem at all to bring him food from the kitchen that had NOT been out to the buffet yet, which was exactly what we wanted. 🙂  (I had checked in advance to make sure this would be OK, so I knew going in that it would be fine. My understanding is that they can do this at ALL buffets. The Chef walked along the buffet with me and I pointed out food I thought he might enjoy, and she brought out his plate for us with fresh foods.)

I’ve read a few disappointing reports from Wish families who don’t feel that their trip was special. I don’t know what the difference is between our experience and theirs. I will say that getting over any shyness about wearing/using the special passes and buttons is key to getting special treatment. People don’t know you’re on a Wish trip if you’re not wearing your buttons. We also didn’t really EXPECT special treatment, so any time we got some, it was fun and special. It’s not really like people went out of their way to sprinkle Fairy Dust on us or anything… but when we gave people the opportunity to go out of their way for us, they often did.

Get the Stroller as Wheelchair pass. You can still park your stroller any time you want, but if it makes it easier, you can bring it in line. We liked having it in line to keep T from licking walls and to keep him a bit separated from other people and their germs. But looking up in advance how each ride worked with wheelchairs might have been helpful. We got great seats at one show, for example, but it took 30 minutes to get out of there afterwards because there was only 1 elevator.

Be kind. Be kind. We saw several of the same Cast Members at Disney on our different days in different parks. They remembered us. Happily, they remembered us because we were kind and fun and polite. Not everyone at Disney is nice (guests). YOU be nice. Being nice and making friends is also your key to a better parade and fireworks experience. People WILL try to shove in at the last minute before parades. If you’ve befriended those around you, you form a loose “team” that prevents those last-minute shovers from shoving in in front of you. 🙂

Be flexible. Your kid getting overwhelmed? Go back to your hotel/Give Kids The World. Or take a break somewhere quiet in the parks. You probably already know this, because you probably already do it in your daily life, but sometimes people get to Disneyworld and lose their minds a little. It’s OK to totally scrap your plans and do something else. ESPECIALLY if your plans are making people unhappy. Park crowded at hot? Eh, go swimming at GKTW instead.

Plan. Not minute by minute. You don’t need to do that level of planning on a Wish trip. But it might be a good idea to look up where the quiet hideaways are in the parks. Where the Wish lounges are (and do be sure to visit them!). Where you might like to eat. Things you definitely want to do.

The trip is for your whole family. Your Wish kid. Your other kids. You. Make sure each person gets to do something special to them. I wanted to watch the musical fountain at EPCOT. So while Randy took the big kids on a ride Teddy couldn’t go on, Teddy and I hung out at the fountain. He fell asleep. I watched the fountain, and laughed out loud by myself, and cried a little. (hush, now. The EPCOT fountains are magical.) It was what I wanted to do MOST. Don’t forget to make room for special experiences for EACH of you.

Emergency Preparedness for those with Medical Needs

My purpose here isn’t to discuss hard-core prepping. I’m not going to give you secrets to stockpiling your prescription meds in the event of widespread social unrest or an EMP. My purpose here is to help those with medical needs, or those with kids with medical needs, to prepare for those everyday emergencies, like bad weather, car accidents, medical emergencies, etc. For ease of writing, I’m going to proceed as though talking about kids with medical needs, but obviously the same principles would apply to adults.

I personally believe there’s no excuse to not be prepared for the unexpected. I’m the type that has Go Bags packed for every member of the family, that runs fire drills at our house, that has rendezvous points established with family members, and that keeps emergency supplies in the car. For my husband’s birthday this year, I’m putting together a Work Emergency Kit. 🙂  We’re prepared. But there’s no reason not to be. And, particularly when you have medical concerns to take into consideration, preparation for every day emergencies is even more important.

The first step is to take a minute to list everything your child needs to survive 24 or 48 hours.

For Teddy, that list would be:

Water, Salt, Meds, Feeding pump (though in a pinch we could make do without), feeding tube extensions, syringes of all sizes, diapers, a few changes of clothes, blended food.

Second, thinking through your daily life, list some emergencies that might arise. In my life, that list would include:

– Unexpected hospital admission
– Car accident leading to lots of extra time away from home that we weren’t planning for
– Bad weather heading to/from Iowa City leading to unexpectedly needing to stay overnight away from home
– Loss of power
– Loss of power combined with bad weather making it difficult to leave the house

For other families, that might include:

– Emergency at school
– Inability to get home from school or work
– Evacuation due to fire, expected hurricane, etc.
– Earthquake

 

Third, and this is deceptively simple, figure out how you’ll take care of all of those things listed in Step 1 if anything in Step 2 happens.

I’ll take one example from our list – needing to unexpectedly stay away from home on a clinic day.
Water: I always have his daily allotment of water with us on clinic days, and I always have two bottles of water for me, so in the event I needed a second day’s worth of water for him, I’d have it.
Salt: I bring his salt for clinic day, and don’t worry about bringing the salt for overnight or the next day. If we have an emergency, missing his salt for a day isn’t going to kill him.
Meds: I obviously bring his morning meds with us, since I have to give him those after labs at the hospital. I also bring his evening doses if the weather is iffy, just in case.
Feeding Pump and Gtube extensions: I bring his feeding pump and cord and two bags with me in what I call my “car bag” that I pack on clinic days – it’s a bag for stuff for the car. I also bring one of each type of feeding tube extension in the “Car bag” (in addition to whatever is floating around in my diaper bag, and in addition to the extensions I pack specifically for that day’s appointments – his bolus tube extension that goes in the small insulated bag with his food and the med extension that goes in the syringe holster with his meds).
Syringes: Since we use syringes throughout the day, I always have what we need with us.
Diapers and Clothes: It’s no secret that I keep a suitcase packed for a week in the hospital in my car at all times. So that takes care of clothes and food for me.
Food for Teddy: On clinic days, I bring Teddy’s entire day’s worth of food, and I also pack in the cooler a second day’s worth of food. This is both in the event of a travel emergency as well as in the event of an unexpected admission.
Misc Medical Supplies: I don’t go anywhere further than walking distance from my home with Teddy without bringing his diaper bag. In his diaper bag is a plastic zip close bag full of those bizarre things we almost never need. A catheter and tape, in case of Gtube breakage. A slip-tip syringe in case I need to flush his Gtube or in case it gets pulled out. Lubricant. Gauze. Tegaderm. A small first aid kit. Zip ties, velcro ties, and a few caribiners (which are useful for securing feeding pump bags in the car, or IV bags, etc.). Bleach wipes and hand disinfecting wipes. I used to carry a ton of emergency PD catheter supplies, as well, but we don’t need those any more.

 

Fourth, and this is the most important step here, actually DO the things you need to do to be prepared. Don’t just think about how you could be prepared. Actually do it. Actually go pack an emergency bag you could grab in a hurry if you needed to. Actually write a list of the things you’d need to grab that are not pack-in-advance-able and actually post it where you keep your medical supplies. Actually send a few days’ of meds along with your spouse to work just in case he gets stuck there overnight.

 

How can I help?

I love this post. I particularly identify with this quote:

The times I have felt the most taken care of and touched by people’s service has been when they went ahead and just served us how they felt led. Many times after the fact we realize that it is exactly what we needed, even if it was just a drink from Starbucks or a run to the grocery store for us. These impact us more than you know. … If you feel led to serve a family, voice how you would like to serve them and then do it. Don’t wait on them to ask for it, because most likely they will not.

I know I personally have moved to asking people if I can do something specific that is within my ability to do and that I think they would appreciate; or that I would appreciate if I were in their place. “Can I bring you a coffee?” or “I’m going to the store this afternoon and would be happy to drop something by – what do you need from the store?” The person can still turn me down if it’s not a good fit (opening the door to, “is there something else you need?”) but I’m not putting it on them to come up with what they need.

This is partially because I’ve been so particularly touched by those who’ve messaged me while I’m in the hospital with Teddy, “I’m driving through Iowa City and I’d love to bring you something – what can I bring?” My answers have varied from Coffee to fresh fruit to french fries from McDonalds. It would feel awkward for me to send someone to the store on my behalf normally. I would not answer “is there anything I can do?” with “can you go to the grocery store and buy me some fresh fruit and some frozen Hot Pockets breakfast sandwiches.” Hello, bossy much? But when the question is phrased such that the person makes it clear they’re already planning to go to the store for me, but merely want to be directed in what specifically I’d like, it’s easier. (And people have generally figured out that what I mostly need when we’re in the hospital is provisions from outside the hospital, since I typically am not able to leave the building.)

 

And her #3 – Don’t Minimize. I’ve found that many parents of medical or special needs kids tend to talk more to other parents with their child’s same diagnosis, because that’s a safe place where most people will say something like “oh, crap” or “that sucks” instead of “oh, it’ll be fine.” At the same time, an “it’ll probably all be ok” response from these other parents-in-the-know is much more reassuring because it’s usually based on fact, not wishful thinking. I’ve learned there are people in my life with whom I don’t share a whole lot because it hurts to hear only denial (or blame) in return. Don’t be that person.

 

Trauma and medical needs, helping kids and parents cope

This morning, I finally sat down to put figurative pen to paper on a blog post about the tough choices parents face during difficult or painful medical procedures.

This afternoon, I spent some quality time with my Feedly backlog and found this article on helping kids deal with trauma. “Trauma Protection for Kids with Special Needs | Different Dream” http://feedly.com/k/17HaRUJ

That was serendipity. 🙂

Teddy’s had more painful things done to him than I care to remember. Most while awake. Most necessary, and most without viable alternatives. It is an unfortunate fact of life for many medical needs kiddos.

And many parents of these kids struggle to figure out their role during these times. Do they stay? Do they leave? Do they help? Do they observe?

If you leave, the thinking goes, your role is one of comforter. Your child doesn’t associate you with the pain, just with the comfort. But then does your child feel abandoned? Are you leaving them just when they need you most? Will they become clingy, fearful that every time you leave the room, someone will hurt them?

If you stay, you can provide support for your child during the procedure. But then are you participating in the hurt? In helping hold your child still, or even simply observing the hurt, are you teaching them that they can’t always trust you to keep them safe?

No easy choices there.

Personally, I have always opted to participate in whatever’s going on. I can hold him firmly but gently, snuggling and kissing in addition to immobilizing. I personally feel like this is a better option than having only medical staff holding him. I can talk him through the procedure, giving voice to what he is probably thinking. And I can be right there with a big hug, snuggle, tuck into the carrier, clothes, blanket, bubbles, whatever he seems to need in the moment the procedure is finished.

We rely on Child Life a lot, too. I feel that I’m better at empathy and they’re better at entertainment. 🙂

Then, though the techniques in the linked article are meant for older kids, I loved loved finding that I’m already doing what they recommend to help kids deal with trauma. Teddy and I talk about what’s going to happen to him in advance, and I talk to him during any procedure, too. I talk to him about what’s happening factually, and I talk to him about how he may be feeling. “You dont like it when she holds your arm down. She holds it like that to keep it nice and still so we can be finished sooner. I know – ouchie ouchie! I hate the tourniquet, too. It’s so tight! You want to take it off. I’m sorry. We’ll let you pull it off when we’re finished.”

As he gets older, we’ll start introducing some therapeutic play, too. He’s already stolen enough tourniquets to open up a small clinic. 🙂

Helping Someone Who Is In The Hospital With A Sick Kid

Do you have a friend facing an unexpected (or planned) hospital stay with a child? Wondering what you can do to help them? Or are YOU facing a hospital stay with your child, and feeling too overwhelmed to come up with something to suggest when others ask how they can help you?

Here are some ideas of things I’ve done for others, things others have done for us, and things that just sound nice.

• Bring Food.
  Real, Homecooked meals
  Snacks
  Chocolate
  Coffee
  Vegetables (vegetables are so hard to get in the hospital)
  Fresh Fruits
  Flavored Drinks, or pop if the person drinks pop.
  French Fries (seriously, we’re in for about a week and I start craving french fries from McD’s)
• Gift Cards
  Places that deliver food to the hospital
  Hospital system food
  Places not owned by hospital but within the hospital (coffee shop, book store)
  Gas Stations
  Hospital hair salon
  Other hospital services that are “extras” like that (UIHC has massage stations, for example)
• Company.
• Unexpected surprises. Of any sort.
• Treats for the child.
  I’ve been surprised that most of the hospital gowns I sell are actually purchased by friends or relatives, not parents, as a fun surprise for the hospitalized child.
  Books
  Craft or activity kits
  A new movie or game
  If appropriate, bringing your kids for a visit, with maybe a board game or group-play video game
• Mail. I love getting mail when I’m in the hospital.
• Texts or email just to check in.
• Books, magazines (or gift card to hospital gift shop to buy one for themself)
• Use of a laptop, kindle, ipad, or similar if they don’t have one
• Offering to hang out with the child so the parent can run to the store, go for a walk, go outside, go somewhere and cry, whatever.
• Help at Home
  Pet Care
  Promises to shovel snow if needed, or mow grass if needed. (in our case, Randy can obviously do these things himself when I’m in with Teddy, but he also has to work full time and be a single parent and he also wants to come visit us on the weekends and it’s just plain NICER for him to not have to worry about these things.)
  Meals for parent/siblings at home
  Light housekeeping
  Ferrying mail between home and hospital
  Helping with other kids (taking them to lessons or classes, taking to/picking up from school, taking on fun field trips, providing before/after school care, etc.)
• And today, in a group I’m in, someone suggested mini bottles of liquor. Which are of course forbidden in hospitals, and aren’t appropriate for everyone, but I’ve had days when an amaretto and coke would have been a nice way to finish out the evening.