Dealing with Doctors: Questions to Ask As you Self-Advocate

This is a reprint of an old post I have over at Teddy’s blog.

This is essentially an article about how to be a good patient. And I know you know I don’t mean the “shut up and do what they tell you” type of good patient.

Too many doctors these days are too busy to really take the time to sit and have a conversation with you. (Especially OB’s – those prenatal visits need to be longer than 10 minutes!) We have always chosen doctors for our family that will take the time, and we lucked out with Teddy’s nephrology team being so awesome because we were hardly in a position to be picky in the beginning  – though we certainly would have switched by now if we were unhappy. But I talk to too many people online who have questions – very serious questions – about their or their child’s health and they’re having to turn to the internet for information that should be coming from their doctors.

Yes, it would be nice if your doctor sat down and chatted with you for 10-20 minutes about test results, current concerns, what’s going on with you or your child, etc. But they rarely do. But that does not mean that they WON’T if you ask.

So ask. You NEED to ask! You should NOT have to search the internet for information about a test you’ve just had. Your doctor, who is looking at the results and went to medical school for the sole purpose of being able to discuss those results with you – should be able to provide you with information specific to YOUR case. You should not need to turn to Facebook with questions like “our doctor said x, what did she mean?” Your doctor, who is the one who actually said the thing, should be able to explain herself in every day language.

I am NOT discouraging you from doing your own research. Just the opposite, in fact. I’m saying that the Google can’t tell you, for example, what the unique set of lab results you have really means, and it can’t tell you how concerning they are in YOUR unique situation. Your doctor can. But sometimes you have to ask them to.

I know it’s difficult to come up with intelligent questions when you’ve just been handed some new information, but we’re not always given the opportunity to process before discussing with a doctor. (You should ALWAYS be able to call or message your doctor after your appointment with followup questions, though.) I know I usually need a day or two to do some research on my own before being able to formulate truly good questions.

But sometimes, you don’t need really good questions – you just need SOME questions, and you really need to ask those questions more or less immediately. Keep these easy questions in your back pocket. (Literally, if it helps. Take a notebook to EVERY appointment, and write these questions on the first page.)

– Can I have a minute?

– What does this mean?

– What were the results of this test exactly?

– What is the normal range?

– What does this test tell us? What doesn’t it tell us?

– Is this concerning?

– Does this need to be treated?

– What are our options? What are the alternatives?

– Do we need to treat this right away? What happens if we wait?

– What does this word mean?

– What is your recommendation?

– Can you please explain that again?

– Can you draw a picture or is there a drawing or photograph we can look at? (Super helpful – our urologist drew us pictures at several points when Teddy was in the NICU. I had the nurse make a copy of one of them for us. I laugh now, because the procedure was so simple in comparison to our knowledge base NOW… but at the time, we were overwhelmed and it was all new to us, and the picture was so important to our understanding.)

Those questions should give you a good foundation of information. I personally think the most important one is “what does this mean?” It’s all-purpose.

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Using Home Currency As A Reward System

Yes, I used to be one of those parents who believed children should not be given external rewards very often. If you give external rewards, they become performing monkeys, and they stop doing things for their intrinsic value. And honestly, that worked out pretty well for two of my kids.

Then I had Tbear. ADHD plus other struggles. Turns out, “ADHD disrupts a person’s ability to manage their own behavior and act with future consequences in mind…If a task in itself provides motivation (such as video games, comic books, or TV) they have little or no problem sticking with it — but that’s because the activity contains its own rewards. Give these kids a task where there is no external reinforcement or payoff, and their persistence falls apart.” (https://www.additudemag.com/motivating-adhd-kids-rewards-consequences/)

They need external rewards.

And, to a certain extent, we ALL need external rewards to persist in tasks that aren’t inherently rewarding. How many times have I sat down with myself before a really boring task and said, “ok, get this done in an hour and then you can go get some fancy coffee”?

But obviously, you can’t bust out a cookie or trinket every time your kid does something, right?

We’ve found using a home currency is PERFECT for our ADHD kiddo, and the other kids don’t mind it, either. Our home currency is those store-bought pompoms. We call them Fuzzies. But you could use poker chips. Plastic discs. Actual tokens. Honestly whatever you have on hand.

Each kid gets a jar. I decorated their jars with vinyl designs, but before I had a vinyl cutter, I just used Sharpie. Tbear is both the youngest and the most challenged – his jar is actually a bit smaller than the others, so he can fill it up faster.

Then we decide what earns fuzzies. We choose a few specific tasks that each child needs to work on – doing those things earns fuzzies. They earn fuzzies when they do the thing. What are some tasks? Currently, my older kids earn fuzzies when they go out of their way to be helpful to someone else in the family. When one of them was over-reacting to everything by screaming, we added “handles being upset without screaming” to the list. Tbear earns fuzzies for doing what we ask him to without arguing, and for cleaning up after himself without being told. For any new task, or any task the child is still struggling with, there is ONLY reward. ONLY earning fuzzies. We are clear with everyone involved what earns fuzzies. We keep a written chart on our fridge, so that nobody forgets (especially mom).

Once the child is succeeding at EARNING fuzzies with a task, then we (sometimes) add losing fuzzies for failing to do the task. If we ask Tbear to do something and he refuses, he loses a fuzzy, for example. Again, we’re very clear with everyone about how they could lose fuzzies. These things are ALSO written on our fridge list.

But what’s the point of the fuzzies? If you’re lucky, your child finds earning the fuzzy to be reward enough. Tbear went YEARS of just accepting that the fuzzy WAS the reward, and he LOVED earning them. It was kind of awesome.

Then he got wise.

Our rewards system is, like the earning system, divided by age group. The older kids have a more complex system. X number of fuzzies can be turned in for getting to take a walk up to the store and spend their own money on a small treat, for example. Or X number can be turned in for some free downloadable content on a game. Or they can choose to turn in a whole jar for ice cream from DQ, fancy coffee, a small toy or treat (in the $3-5 range), or $3 towards a future larger reward.

Tbear can only turn in full jars, and he always wants toys. I actually shop for the things I know he wants on eBay and try to keep a few on hand. He’s also matured to the point that if he finds something he wants while we’re out shopping, I can actually buy it right then, but put it in the closet until he earns it with fuzzies. Delayed gratification. So he’s working on skills WHILE working on other skills. We also occasionally get slightly more expensive toys (like $8-10) and he has to have TWO jars to earn that. This is REALLY hard for him, but I think it’s a good thing for him to work on.

And, you guessed it, the rewards are ALSO written on our refrigerator list. I personally think writing things down is really important. Everyone thinks they’ll remember, but then you get a month or so down the road, and one of the kids says, “don’t I earn fuzzies for x?” and then it’s CHAOS. Avoid that. Write it all down.

All About… Syringe Holsters

We have JUST finished a redesign of our popular Syringe Holsters – and we’ve made them into something you’re going to love even more! Here at Wallypop, we pride ourselves in bringing you handmade items that bring a real, practical improvement to your life, and we think these redesigned Syringe Holsters do exactly that!

First, when or why would you use a Syringe Holster? Most people use them for when they’re away from home and will need to give meds. For example, we most commonly use our syringe holsters when we’re gone for the day for trips to the hospital for clinic or other appointments. Most people who purchase a Syringe Holster have previously tried carrying their pre-drawn liquid medications in plastic bags, or in various hard plastic containers, or even – like I did a few times – in cups. But plastic bags can get messy and are hard to locate in your bag. Hard plastic containers are so bulky. And cups obviously don’t work all that great.

Benefits of using a Syringe Holster? Convenience. Less mess. Easy to find your medications in your bag. SO CUTE. Reusable. Collapsible. Protects your syringes better than plastic bags. And a further benefit of the Syringe Holsters is the ability to sort your medications by type or, as I do, by time. I load up our Holster with all the meds for the entire day, but I order them by time, so I can just work my way from left to right as the day wears on.

Our new Syringe Holsters have 8-9 pockets (the one pictured has 8) and will hold up to 20 syringes. And though I say “up to 20,” your average person who uses a variety of sizes of syringes will fit more like 8-12 syringes, depending on whether you want to use the larger last pocket there for gtube cushions, a small med bottle, etc., or if you want to use it for syringes. These holsters will accommodate up to about 30 mL syringes.

We can absolutely make larger (or smaller) holsters. We’ve made holsters for 60 mL syringes. We’ve made holsters for 30 syringes. We’ve made holsters for 5 syringes. We can make a holster to suit your needs!

After you fill your syringes and cap them, load them into the holster with your syringes, extension, gtube cushions, whatever. Then just roll up the Holster and fasten it with the elastic cord. It secures with a cord lock. (A vast improvement, I think, over the ribbon ties of our older model.)

Our syringe holsters are still constructed using the high-quality methods we’ve always used – a layer of decorative fabric on the front that shows when the holster is rolled, a layer of decorative fabric on the inside, matching or coordinating fabric for the pockets, and a layer of sturdy thicker material hidden inside to give the holster structure, sturdiness, and longevity.  For this model, we’ve added nice, sturdy elastic cord (the same elastic cord we use on our babywearing items) and high quality cord locks.

Our syringe holsters do NOT come with any of the accessories pictured. Syringes, extensions, medications, and gtube cushions are not included. You can purchase Wallypop/Boulevard Designs Tubie Button Cushions separately, but syringes and extensions need to come from your pharmacy, your DME supplier, or a retail medical supply store.

Available through our own website here, or from our Etsy store.

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How Do I Deal With All The Other Parents?

How do I deal with Typical parents?

Let me pause right here at the beginning to say that I personally don’t find any offense in terms like “normal” or “regular” or “typical” or really anything. Like most words, they can be used in a way that is offensive – and they can be used non offensively, as well. I tend to use these words in this context to capture that feeling many of us have of being distinctly “not normal/regular/typical” – as in, “outside the norms” or “outside the average.” Our lives are not within the norms, our lives are not average. That’s not necessarily a bad thing. It’s not necessarily a good thing. It’s just a thing. If the word “normal” or “regular” offends you, you might choose to skip this post.

I see this feeling being expressed in special needs groups all the time.

“How do I handle my feelings when I read about my friends’ kids, who are all typical?”

“When I read my Facebook feed, I just feel icky about my own life – my kids will never do the things everyone else’s kids do.”

“We’re in the hospital dealing with x, what do I do about listening to my friend/sister/mom complain about a teething baby/a cold/a scraped knee?”

“I’ve been functioning on 5 hours of sleep or less nightly for a decade – I can’t handle my regular parent friends acting like they know what that’s like because their 6 year old had one rough night, but I don’t know what to do with that.”

It’s all variations on the theme of “How do I deal with all the regular parents?”

 

This Feeling is OK

You need to know that this feeling is ok. It’s perfectly acceptable to feel like this. I don’t know what percent of special needs parents feel this way at least once in their life, but I’m betting it’s a high percent, based on how often it comes up.

 

What is a Typical Parent?

A friend (herself a “typical parent” asked me once, “but what is a typical parent?” Speaking in generalities, in this context, “typical parent” is meant to encompass parents who have only typically developing children. Parents who have no special needs children, no medically complex children, no children with mental illness. I was a typical parent until my youngest was born. It’s not a bad thing.

 

What is the real problem?

Back to these vague icky feelings when bumping into typical parent concerns.

I think most of us understand that the real problem here is us, right? Obviously, on an academic level at least, we understand that the people experiencing normal parent things are distressed about those things, and those feelings of distress are perfectly normal. Teething does suck. Hitting is hard to deal with, and embarrassing on top of it, even if developmentally appropriate. Sick kids, even if sick with minor things, are hard. Losing sleep, even if just one night, is still hard.

Moving away from parenting, it’s like if a tornado destroyed your house and then you also see that a friend’s car broke down. You’ve lost EVERYTHING and your friend is whining about her car. But you can, at least academically, also understand that having to deal with a broken car is ALSO frustrating and expensive, even if it isn’t as devastating as losing everything you own.

Just because you’re experiencing something HARDER doesn’t make other people’s things NOT HARD.

But I don’t really need to say that, I don’t think. I think most people completely understand this. That’s what makes the icky feelings. We know that the other people aren’t doing anything wrong, and yet we feel…. We feel a lot of things.

 

What we’re feeling

What are we feeling? Jealousy. Loneliness. Left out. Alone. Like an outlier, a freak. Like the only one who has to deal with stuff beyond the typical.

And, in typical (see what I did there) human fashion, the thing we most often FEEL is anger. Humans are so good at anger. Anger is easy to feel, and it hides other emotions so we don’t have to acknowledge or deal with them. Anger – usually hiding something else.

So, if I’ve described you here in his post – finding it hard to cope with all the “normal” people in your life and their seemingly stupid, piddly problems, when you’re over here dealing with some really big stuff – take a bit and examine what it is you’re really feeling.

This might be a difficult exercise.

I think, for many, it’s jealousy and aloneness.

As Kermit said, it’s not easy being green. It’s not easy feeling like the ONLY ONE. And oh, how we want normalcy. Not “our” normal. Not “the new” normal. Just straight up normal. Or not even normal. Just not crisis.

When I was exclusively pumping for Tbear (who is tube fed), a post by someone trying to deal with their baby wanting to nurse all the time just shoved me right off of some invisible ledge. That was jealousy. SO MUCH Jealousy. I would have sacrificed my left breast to the gods of food if my child would just eat with his mouth. I would NEVER complain about nursing too much – how DARE she complain about something like that, when I would GLADLY sit in my chair ALL DAY and nurse my sweet baby if that’s what he wanted?  That, friends, is jealousy. Yep. I could own that. It was jealousy and it left me feeling really really icky, because this poor mama did nothing wrong and I hated her for a moment.

 

So what do we do?

I have a few suggestions of things that I’ve done that seem to have helped.

First, obviously, recognize – out loud – that the problem is you. The problem is you and that is OK. You’re dealing with a lot. But you need a solid understanding that the problem is not other people. Again, I think most of us already have this. Obviously, other people experiencing every day things and talking about them – even complaining about them – is absolutely fine. Do people in general complain too much? Sure, but that’s almost beside the point.

Second, practice kindness to yourself. Accept this part of you. You’re jealous and you feel alone. Or whatever feelings you identified earlier. These feelings are ok. You’re ok. You’re fine. You’re not a bad person.

Third, let go of the idea that your feelings are wrong because others have it worse than you. Embrace, instead, the similar but slightly different idea of practicing gratitude in your daily life. Your feelings are ok, they are not WRONG. But neither are they necessarily productive. Consider, every time you have these icky feelings, thinking about the things you have to be thankful for. Read, if you like, this post about how special needs parents are more grateful than typical parents. I think it’s so true. We have SO MUCH more to be thankful for. How many typical parents experience the level of joy that I did when Tbear zipped up a jacket by himself for the first time? How many typical parents celebrate things like a few ounces in weight gain, or a regular poop? They’re missing out.

Fourth, fill your life with nontypical parents and children. I really think this is what made the difference for me. I left all my regular parent groups, so I’m not inundated on social media with regular kid problems any more. I joined a ton of special needs groups. (Having a kid with a billion diagnoses makes that easy, lol.) I made friends with other special needs parents. The parent part of my social media feeds now are about 60% special needs kids and parents and 40% typical kids and parents. The special needs part is now the norm in my world. It feels normal. I feel like less of an outlier. I don’t feel like The Only One any more.

And that feeling? That no-longer-alone-in-this. That I-belong-somewhere. That is what makes it so much easier to not get bothered by the “my poor baby (4 year old) has a cold and is just miserable and we’re all so worried, even though she’s typically very healthy, we have no reason to think her body won’t fight this off in a few days, and needing to utilize a hospital or even a doctor has literally not even crossed our minds” type of posts.

 

I feel like I need to repeat for all of my typical parent friends. The problem is NEVER you. I NEVER want you to feel like you have to censor yourself around me. Your experiences are your experiences. It’s OK to say that your child’s cold is really bothersome. It’s ok to complain about teething. Just because someone else in the world is experiencing worse things doesn’t make your thing not a thing. I have friends whose child has died – and they would give anything to have my problems with Tbear because it would mean their child is still here, with them. I know this and yet that doesn’t make the things Tbear has to deal with any less difficult. You can complain about something while at the same time being grateful you don’t have something worse. Humans are complex creatures – we can multi-task.

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Helping Families who have a Kid in the Hospital

This is a reprint of an article I wrote a while back for Teddy’s blog. 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.

1. Bring Food.
– Real, Homecooked meals
– Snacks
– Chocolate
– Coffee
– Vegetables
– Fresh Fruits
– Flavored Drinks, or pop if the person drinks pop.
– Good coffee
– Good fast food, if they eat fast food. (About a week in, and I start craving french fries)

2. Gift Cards
– Places that deliver food to the hospital
– Hospital system food (many hospitals have in-room meal delivery for parents and these meals can usually be purchased FOR parents in the hospital cafeteria)
– 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)

3. Company. Just bring yourself.

4. Unexpected surprises. Of any sort.

5. Treats for the child.
– A fun hospital gown
– 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

6. Mail. I love getting mail when I’m in the hospital.

7. Texts or email just to check in.

8. Books, magazines that are something the parent would realistically read. This isn’t the time to sell your friend or family member on a new parenting style, religion, or diet.

9. Use of a laptop, kindle, ipad, or similar if they don’t have one.

10. 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. Bring a game or activity to do with the child.

11. 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, clothes, etc. 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.)

12. 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. Obviously, you need to use good judgement here.

13. A ride. If they took an ambulance to the hospital, they don’t have any easy way to get home. We’ve also had times we took the car to our local hospital and were transported from there to the children’s hospital 2 hours away. We then needed help arranging for our car to get from the local hospital to our home, and then we needed a way to get home. It’s a lot of vehicle shuffling.