Tips for Surviving a Long Clinic Day with your Child

We drive a fair distance to see specialists (depending on which specialists, 2 hours or 10 hours) and appreciate it when they coordinate schedules to see us on the same day to cut down on driving time, gas, etc. But that can result in some LONG days hanging around a hospital. Here are our top tips for surviving those long days.

1. Pack Wisely

I prefer a medium sized backpack because that’s what I find the most comfortable, but you do what works best for you. Whatever type of bag you choose, keep your things easy to find. I use my small and medium wet bags to keep things organized in my backpack, so when I need to grab, for example, supplies to start a meal with the feeding pump, they’re all in one place together. Any children who come with you who are old enough to carry their own things should carry their own things, as well.

It also bears considering the weather and any other extenuating circumstances. During sketchy weather, I tend to bring the whole medication box and a few days of tube feeding supplies as well as a complete change of clothes and a toothbrush – if a snowstorm blows through sooner than expected, or what was supposed to be rain turns to ice or a tornado, we will have the supplies we need to hunker down overnight, rather than having to push through.

2. Make a list, check it twice

Obviously, you need to bring all of the things you need for the day, plus all of the things you MIGHT need for the day. And though you’ve maybe packed for a day away from home a billion times, if your clinic day involves leaving the house at the crack of dawn or earlier like ours do, you might want to make a list instead of relying on your memory. I pack up as much as I can the night before, then make a list of the things that aren’t packable – meds that need to go in the cooler, for example, or some hot coffee for me.

3. Different bags for different jobs

I like to pack a clinic bag (that I take in with me), a car bag (which holds supplies for use in the car or for keeping in the car as backup), and an emergency bag (this bag actually lives in the car and has supplies we’d need if we have car trouble or unexpected weather delays our return home). We also usually take a cooler, not only for the meds that need to stay cool, but so that we have nice cool drinks when we get back to the car, and to hold snacks that are better cool. And for many years, every clinic day I also loaded up our hospital suitcase, which had supplies to last a week inpatient.

It bears mentioning that in the winter, we also bring a bag that has a complete set of extra winter supplies for everyone, and I also usually throw our coveralls into the car. Again in case of unexpected weather or car trouble.

Two bags on an asphalt roadPhoto by Dids from Pexels

4. Snacks, Lunch, and Water

Pack snacks. Lots of snacks. If you’re leaving early, pack breakfast. If at all possible, make something like a breakfast sandwich for every oral eater and heat it up as you walk out the door for some nice protein to start your day. Make sure your snacks have protein, as well. Have a solid plan for lunch – either pack it or plan to buy it there. And bring drinks – preferably water, but I know I sometimes need either the sugar or the flavor of non-water drinks to make it through clinic days. I try to stick with herbal iced teas, but won’t lie that I sometimes pack myself a root beer for the drive home. In the winter, I sometimes pack myself a hot tea bag and get myself a cup of hot water from the coffee machines for a nice hot tea treat between appointments. When I was bringing the older kids, I’d often pack a hot chocolate mix packet and let them split it between appointments. A little treat tends to go a long way when you’ve got a long boring day.

5. The Car bag

My car bag has a handful of snacks for all the oral eaters, extra water bottles, some rags, DVDs, a few extra diapers, a change of clothes for me and for any children who might need it, emergency supplies like a spare bag for the feeding pump, a shelf stable meal (or cold meal if we’ve brought the cooler) for everyone who’s coming, and any other supplies we may need that we don’t want to carry with us. The shelf stable meals – I can’t tell you how many times we’ve ended up eating them. We can’t always afford to buy food for everyone from the cafeteria, but many clinic days have dragged on much longer than expected and left us starving and needing more than our lunch and snacks. Heat and eat food to the rescue! (We usually bring one or two of those microwave single mac and cheese bowls, a can of spaghettios, and a shelf stable pasta meal.) I also always pack a few of my emergency chocolates. (I hoard a specific type of chocolate that’s only available during the Christmas season, and I always have a few of these in my car bag for the drive home. I don’t really drink, but these are like my version of wine. Bonus: I can enjoy while driving.)

6. Electronics

If you use electronics, long clinic days are the time to get those out. Whether you have tablets or portable DVD players, electronics can help fill hours in the car, hours in the waiting room, and hours in the doctor rooms.

A boy plays on a Kindle in an exam room

7. Audio books or Podcasts

If your child/children will listen to audio books, pick something you can all enjoy together. If your child/children will not listen to audio books, pick something you’ll enjoy while you drive. I have read so many books this way, over nearly 8 years of driving to and from clinic appointments. It gives my mind something to do so it doesn’t go into auto pilot too bad while I drive.

8. Car Games

If your child is capable of playing car games, they can be a great way to fill the time in the car together. I’m Thinking Of, I Spy, Alphabet Games, Would you Rather, 20 Questions, etc. are all great to do in the car and easy enough to do while driving. Parents magazine has a decent list of car games here. These games are also great for waiting for the doctor, as well, as long as your child can quickly transition to another activity when the doctor comes in.

9. Prizes and Activities

I don’t pack a prize for one-appointment days, but for long days, I usually pack some sort of small, cheap, new toy, or an old toy that’s been forgotten for a while. I try to find something that will be engaging for longer than a few seconds. Pullback cars are always a hit with my kiddo, for example. If your kid’s into crafts, bringing the parts needed for a non-messy craft or two would be awesome. Bring a printout of a Lego creation and the bricks needed to make it, or some How To Draw The Thing Your Kid Likes instructions, as well as some art paper and drawing supplies. Some kids are really into coloring or activity books. Obviously you’ll bring activities your kid likes to do, but try to also bring something you can realistically pull off as being a Prize (or a surprise). We usually pull out the Prize after the first appointment. It’s just a little extra something to look forward to on an otherwise boring and sometimes icky day.

10. Work on rules for when the doctor comes in

We have a rule that when a doctor is in the room, kids get my attention nonverbally and they refrain from obnoxious behavior. This is a goal, and it isn’t always achieved. But I do remind them every time we are waiting for a doctor. “What’s the rule for when the doctor comes in?” Make it clear what the expectation is and remind them as necessary.

Mom and boy playing go fish

11. Help older siblings learn to navigate the hospital

Older siblings can start learning how to navigate the hospital on their own. Help them notice where the signs are, the name of the place where you are, how you got there, etc. Point out where the bathrooms are when you walk by them. If you feel safe enough, and if your kids are old enough and well enough behaved, they can go places – even if it’s just back to the waiting room – on their own while you and the kid the appointment’s for stay in the “doctor room.”

12. Your child is a child. Your child’s doctor chose pediatrics.

Your child is a child. They’re going to act like a child. They’re not going to sit quietly and wait while you and the doctor talk, especially after a long car trip. Even if they’re being pretty good, they still make noise. Play is often noisy. They aren’t going to always cooperate with everything the doctor wants to do, either. And it’s fine. Your child’s doctors chose pediatrics. Everyone they see all day is a child. Are some children more cooperative and better behaved than yours? Yep. But so what? Any pediatrician who judges you or your child based on behavior during long, stressful days isn’t probably worth your time. But most peds doctors are pretty accustomed to talking over background noise, to getting down on the floor to address a child, to coaxing cooperation from a reluctant child. Your kid’s a kid. It’s ok.

13. Exercise between appointments

Sometimes, we find that clinics want us to wait in the doctor room for the next doctor, rather than go back to the waiting room. I don’t mind this – I’d rather not have to pack up all our stuff again – but those rooms are SO SMALL and SO PLAIN. They often don’t have windows. Even I get a little stir-crazy. We have never felt an obligation to actually remain in the room, as long as we can SEE our room at all times. Our new Children’s hospital has hallways that are quite deserted most of the time, since staff use back hallways, so I let my kiddo go run wind sprints between appointments. “Run as fast as you can to that chair and then turn around and run back!” or “hop like a bunny until you get to the star on the floor, then turn around and walk like a bird back to me!” Before they remodeled, the hallways were much busier, so we didn’t run, but we did still stretch our legs and walk up and down the hallways. As long as you keep an eye on the door to your room so you can run back when you see someone headed in, this SHOULD be ok. Nobody’s ever said anything to us about our wandering habits, anyway.

14. Find fun things to look at or do between appointments

We do bring between-appointment activities (usually it’s Go Fish cards right now because he’s totally into Go Fish), but we also enjoy exploring and finding interesting things to look at around the hospital, and we also usually seek out the things there are to do at the hospital. Does your hospital have a playground or a playroom? A patient library? Activities? Artwork on the walls? Statues to look at and pose with? New hallways to wander down? Find a map, ask the people who work there, or just wander around a little and see what you can find. One day at Children’s in Cincinnati, we took a picture with as many statues as we could find, for example. One day, I had him pick an elevator and then pick a number, and we got off on that floor and explored, lol. Consider asking other parents for their tips on things to do at your hospital – we discovered, through much wandering, a little cubby in a not-busy waiting room with an Xbox, for example, and that’s where we spent an hour one day.

Young Boy standing next to a Purple Caterpillar Statue

15. Plan a post-clinic reward

Is there a playground nearby? A fun park? A children’s museum or zoo (if you have the energy for something like this after a clinic day)? Is there an inexpensive treat your child likes (like McDonald’s ice cream or a fountain drink from a gas station)? Whatever your kid would enjoy and find rewarding, plan to do it after a long day in clinic. It isn’t a reward for good behavior. It isn’t a bribe. It’s a “we just have to get through x more appointments and then we can (whatever)!” The treat is a given. It cannot be taken away for “bad” behavior. It’s simply a way to recognize that they – and you – made it through the day – whoo hoo!

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Judgemental Family Members (or friends): How to Deal

Most of us have them. Certain members of our family or certain friends who don’t believe our children have the diagnoses they have. Or they don’t believe those diagnoses even exist. Or they are certain your child could be fixed with the right parenting – parenting that you’re obviously NOT doing. Or they downplay the difficult realities of your child’s life. Maybe they think babywearing is ridiculous, or homeschooling will ruin your children. Maybe they restrain themselves to nonverbal judginess – snorts, scoffs, eyerolls. Maybe they even undermine you directly to your child.

In short, they’re a real joy to be around.

Every family is different. Every situation is different. I’m not here to give you a step by step, sure-fire way to fix your judgy family members and friends. What I can do is offer you some tips that have worked for us and that have worked for others I know. The goal here isn’t to win, it isn’t to score points. It’s to at least attempt to win the person over, to get them on your team, or to at least get them to shut their mouths. Try one, try them all, and share what worked for you in the comments!

A woman with dark hair looks very mean and disapproving

First, Do They Know What’s Going On?

You can’t expect understanding if you haven’t been upfront with your child’s struggles. Don’t just tell family and friends that your child has ADHD, or your child has autism, or your child has heart failure. Too many people don’t know what those terms actually mean – and, worse, they think they do.

You’ll want to name the diagnosis (or diagnoses), explain how it/they impact your child, and give an action step or two.

“Johnny has combined type ADHD. Contrary to what many people believe, this means that his brain is actually UNDER stimulated. His brain subconsciously seeks stimulation that more typical brains get from normal body chemicals. What this looks like to us is sometimes what appears to be naughty behavior – but is often just seeking stimulation or input. You can actually watch it happening if you’re observant sometimes – after a period of quiet, his brain starts seeking stimulation. It knows from past experience that hitting a sibling gives it LOTS of exciting stimulation. Then Johnny’s much lowered ability to stop and think – his impulsiveness – means that there’s no pause between the thought entering his head and his body doing it. BAM. And his brain’s happy because the sibling has yelled and mom’s mad and there’s so much EXCITEMENT going on. It isn’t caused by poor discipline – it’s actually an imbalance of brain chemicals and structural differences in the way the brain works. It’s really quite fascinating. Johnny’s working with a therapist to strengthen his skills in managing his behavior, and you can help, too, by stepping in with a calm voice when you start to notice he’s getting too squirreley. Often, he just needs a change of pace to get himself back under control.”

“Elizabeth has a primary immunodeficiency called NK Cell Dysfunction. This means her body’s NK cells – part of her immune system – don’t work very well. NK Cells help your body fight viruses – her body just doesn’t do this very well, which is why she’s often sick. When she’s sick, she has to miss school, and it’s hard to keep up with her peers, even though she’s very smart, because she misses so much school. You can help by being sure to let us know if you’re sick when we’ve planned to get together.”

This is an important first step. You’re never going to get the buy-in if your family doesn’t know what’s going on.

“Well,” you might think. “It’s really none of their business.” And yes, I agree to some extent. There are a few things we’ve decided are just not anyone else’s business – either forever, or for right now. But then I can’t expect others to be understanding about the effects of those things, because they don’t know. For example, if my child must take medication that makes him ragey, but I don’t tell anyone, I can’t be surprised when they respond to him like he’s just being a really naughty child. Because they don’t know what’s going on.

Second, do you have a safe place to vent?

Most of the time, people can handle tense situations so much easier if they have a sympathetic ear to complain to. Find that person. Use them. Preferably not in front of your kids.

The Techniques

Ignore it

The simplest way to deal with judginess is to just ignore it. Like, really really ignore it. That eyeroll you noticed when you brought food for your kid that they can/will eat? Pretend you didn’t see it. The not-very-quiet comment about your child’s behavior made to another family member? Pretend you didn’t hear it. Ignore, ignore, ignore. I find it’s helpful to repeat to myself “don’t engage, don’t engage, don’t engage.” Just don’t see the things. Don’t hear the things. I like this for situations that are short-term with people I don’t see often, or for a situation where it wouldn’t be appropriate to address the issue. It lets me save my energy for things that actually matter, and keeps whatever event I’m at pleasant. It’s often not really worth the energy to address judginess from people or situations that you won’t encounter very often, and it isn’t often worth the unpleasantness to have it out with Aunt Martha in the middle of a funeral.

“You don’t say”

This strategy involves, not exactly ignoring entirely, but MOSTLY ignoring. This works best with people who want to give you advice, tell you what you’re doing wrong, etc., but who you don’t see often enough to really worry about, or for situations where you just don’t want to actually confront the person for whatever reason. Let them say whatever they’re going to say. At the earliest polite opportunity, say something polite but dismissive. “Huh, you don’t say.” Then walk away, start talking to someone else, or change the subject. “If you let him get hungry enough, he’ll eat. Children don’t let themselves starve.” “Oh, ok. Hey, have you read Ted Chiang’s latest book?” If they persist, you can try simply letting them go on for as long as they will with no encouragement from you. (Be polite, but don’t engage with head nodding, eye contact, or verbalizations.) When they finally stop, go back to Plan A: Dismiss+move on. “We’ll have to think about that. Oh! That reminds me, I wanted to ask Aunt Barb about her cats.” This is also called the “pass the bean dip” technique. “I think your child just needs firmer discipline.” “oh, ok. Hey, could you pass the bean dip?”

Humor or Light Sarcasm

I used to do this with breastfeeding. “How long are you going to keep nursing that baby?” “Well, we figure if he takes classes at the local college, he can come home between classes for a snack…” Depending on the reaction, plan to wrap this one up like You Don’t Say – change the subject or find something else to do and somewhere else to be. We’re still mostly practicing avoidance here.

“Have you tried ?” “No, but we did try waving a dead chicken over him. Didn’t work. Oh, looks like I’m needed in the kitchen!”

If you can’t think of anything humorous to say, sometimes it works to just pretend that whatever the other person said was funny. “Kids won’t let themselves starve.” “ha! That’s a good one!” or “haha! Yeah, that’s what we thought, too. hahahhaha.” Walk away.

Eliminate the Middleman

Don’t allow other family members to tattle to you. I’ve taken the stance that I don’t actually care what is said behind my back. I have a decent idea of what is said, and I just can’t bring myself to care. I really only care about what’s said to or in front of me or my children. Therefore, I don’t allow others to gossip to me about what they heard Aunt Judy said to Cousin Bob last week. I only care if I heard it directly from Aunt Judy. You may feel differently here, but I just don’t think anyone’s best interests are served when we run on gossip.

A man and a woman talk sitting in chairs

Educate Informally

Correct incorrect assumptions or statements made by the person in question, casually and gently, as they come up. “Kids won’t let themselves starve!” “You are right, most kids won’t, that’s true. But for some kids, the wiring that connects their body’s ‘I’m hungry’ messages with their brain’s ‘need to eat’ messages just isn’t working right. In Little Janey’s case, (whatever). So she uses a feeding tube until her brain can sort that out – we’re so glad we have that available as an option for her, so she can grow healthy and strong! Thanks for your interest in her feeding tube! I can show you how it works the next time I get ready to feed her if you want to watch.”

Try to work in a positive thing to say at the start and the end. Start by affirming that they’re actually RIGHT, or at least partially so, or by complimenting their excellent observation skills, or by using words like “interesting.” “That’s interesting that you say that.” End with another compliment, or by thanking them for the conversation, or by thanking them for their understanding, or for listening, or for accepting what you told them – even if they didn’t really.

And, if possible, invite them to be part of your experience. I’ll show you how tube feeding works. I have an excellent link that gives you a bit of an idea of what it’s like to experience the world with a sensory processing disorder. There’s an event next week at the library called “Experiencing Dyslexia” that you might be interested in. Do you want to come along with us to his next dialysis appointment so you can see how it works?

Again, the goal isn’t to get in a good zinger. Those are fine if we’re talking about a stranger in the grocery store who you’ll never see again, but this strategy is for people who you see regularly. The goal is to maintain the relationship and get them on board with you, rather than fighting you. You’re playing the long game.

Educate More Formally, Part A

So what if you have a person who you see often, you wish to maintain a relationship with, you’ve told them the situation, you’ve done some informal education along the way, and they still make judgy comments?

Enter into a conversation. In this case, you’re being a bit more active – rather than waiting for the other person to say something to you, you’re bringing it up. Either because you overheard a comment, you saw the eyeroll, or you just saw an opening.

Use your “I” statements that you learned about in middle school. (or was that just me?) “I noticed you have frequently commented on Mikey’s behavior when we’re at mom’s house. You might remember he has autism. In Mikey, that often manifests itself in an inability to roll with the punches or deal with rules or expectations that suddenly change. For example, earlier to night, he had been looking forward to playing baseball after lunch – and that had been the plan. But then after lunch, everyone decided to watch a movie instead. Most kids his age can just roll with that, but he cannot. His brain isn’t made that way. I know it can be difficult to understand when you don’t have a kid with autism, but it isn’t poor behavior – it’s him trying to deal with a world that’s very hard for him to navigate. Usually, it helps to (whatever). I’m not asking everyone to change to suit him – it’s perfectly fine that everyone’s watching a movie instead. But it would be ideal if we could all just give Mikey the time and space he needs to deal with his frustration (or whatever).”

Educate More Formally, Part B

This can be used in conjunction with the above Part A, or on its own. Simply put, send or bring the person some educational information. Sometimes people won’t believe you, for whatever reason. Anything you say is dismissed. But sometimes they’ll believe doctors, researchers, or the staff of Good Morning America.

But don’t just fire off an email, “Hey, you need to read this.” Enter into a conversation. Either stick it onto the end of the conversation above (“I have some excellent resources that might help you understand. I’ll email you one and I’d love it if you could read it.”) or start a whole new, shorter conversation (in person or via electronics). “You might remember that Matilda has hypotonia. In the event you’ve forgotten what this means for Matilda, I’m attaching a short article about what hypotonia is and how it impacts kids – I’d love it if you could read it as a refresher. Thanks!”

Then, follow up. Next time you see them, ask if they had a chance to read the information and if they have any questions. Ask nicely, not like you’re challenging them. “Hey, have you had a chance to read that article? I’d love to answer any questions you have.”

Ask for Understanding

Here’s where we start to get a little more blunt. At this point, you’re no longer trying for buy-in. You’ve given up on that. You’re just trying to stop the comments.

Use your sandwich technique (start and end with compliments or something positive). Say something positive, name the thing that you want changed, ask for their help or understanding, end with something positive.

“Aunt Jan, I can tell how much you care about my Janie, and I love that you love her so much! I know that you think that the feeding tube is a mistake and we should just force her to eat with her mouth. I have explained to you why that isn’t an option and why it wasn’t successful in the past. This is not a decision that’s up for discussion. This is now an off-limits topic. If you want to learn more or ask legitimate questions about feeding tubes, I’m always open to that conversation, but I will not entertain criticism on this topic any longer. I value our friendship and I love spending time with you, let’s not spoil it by arguing over this same topic every time, OK?”

“Mom. It’s obvious how much you care for my kids. And I know that our decision to homeschool them really bothers you.

Draw and Enforce Boundaries

We’re still going for polite. We’re still trying to maintain the relationship. But we’re getting serious. You need to explicitly name the unacceptable behavior and name the consequence for the behavior. Yes, yes, just like you would if you were talking to your children.

“The last time we spoke about this, I asked if you could please stop criticizing our choice to use medications to help Max with his ADHD. Yet you continue to bring it up. This is not acceptable. It must stop. If you can’t restrain yourself from criticizing our parenting choices in the future, we’ll need to reduce the amount of time we spend together.”

But it cannot end there. If the person respects the boundary, consider whether it would be appropriate to offer a thank you. Maybe after a few visits where the named behavior doesn’t occur, you might text them after and just say, “hey, thanks for following through on not bringing up x. I really appreciate not having to feel defensive every time we’re together.”

But what if they don’t? Do not establish a boundary you’re not prepared to enforce. If they do the named behavior, you do the named consequence. You’ll need to thoughtfully consider the person and the situation to determine exactly how to follow through, but maybe you get up and leave in the middle of a gathering as soon as the named behavior occurs. Maybe you grin and bear it, but turn down the next event and explain why. But you cannot just ignore it. Just like with children, if you name a consequence and do not follow it, it’s harder to be taken seriously the next time.

Reduce Contact

Of course, you can just reduce contact without all of the above bluntness. Maybe bluntness isn’t your thing, or maybe you have reasons to believe all the bluntness in the world won’t help. Just simply start seeing the person less. Show up for gatherings less often. Don’t initiate phone calls or texts. Unfriend or unfollow the person on Facebook and change your settings so they no longer see your updates. Take whatever steps you can on the other social media places that all you young’uns are using these days.

End the Relationship

I put this one last because it’s the most extreme, but shouldn’t be eliminated. Especially if the person in question is undermining you to your kids, ending the relationship is a step that deserves consideration. And it should be done, if possible, in a way that doesn’t pull the whole family into drama. The disagreement is between you and the one other person – everyone else doesn’t need to know the details. However, be warned that if you decide to stop talking to Grandma, probably many, many others in your family are suddenly going to make it their business.

Practice Makes Comfortable

I personally find that practicing potential responses to potential things people might say helps me to feel more comfortable going in to any event, and helps things go more smoothly during the event. It helps me keep my responses upbeat, positive, and less flying-by-the-seat-of-my-pants. You can practice with someone else, or you can just practice in your head.

Analyze Your Own Situation

Now that you’ve read through the list of potential ways to handle the situation, you need to decide what might work best for you. Before you can do this, you first need to analyze your situation. Think about the family member(s) or friend(s) that led you to this post. What is your relationship with them? What you do WANT your relationship to be? Is what you want realistic?

If the person is someone you don’t see often and you don’t have deep feelings about, ignoring it is probably the best choice.

If the person is someone you see often and you wish to maintain the relationship, you’ll need to decide what you think will work best with that individual person that still maintains a good – but honest – relationship.

But it is also a good idea to really, honestly consider if what you wish for a relationship with the person is actually realistic. Sometimes we want to have a “normal” parent, for example, instead of the parent we actually have. (We want a parent who is loving and supportive of our choices, rather than one who reacts as though we are still small children, for example, or who has more typical reactions to situations instead of extreme reactions that come from their own past trauma.) Look honestly at the person you’re reading this post for – are you being realistic about the type of person they are and the type of relationship you can have? If not, the FIRST step to managing the relationship and dealing with the judgementalism is to change your expectations of the relationship. I’m going to very sincerely suggest that it might help to get a therapist on board if you suspect that your expectations for a relationship with a close family member may not be realistic for that person.

So, I hope these ideas are helpful. Got something that’s worked well for you? Let us know in the comments!

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.

Simplify Your Life as a Special Needs or Medical Parent

Life as a parent to a medical or special needs kiddo can sometimes feel overwhelming! You’ve got regular parenting things to do. Regular adulting things to do. And then you’ve got a whole additional career as a nurse/doctor/therapist/care provider for your kiddo. And, of course, the ever-present need to do some self care, which everyone agrees is important but nobody seems to want to actually help make happen. Right?

The fact of the matter is that we’re all humans. Humans have a limited supply of time and energy. A disproportionate amount of our time and energy as parents to medically complex or special needs kiddos goes to our medically complex or special needs kiddo, leaving a smaller-than-most-people’s amount left for all the other things, particularly the regular adulting type things.

So the first step to simplifying your life is…

Recognize that you have to be purposeful about how to spend your time and energy.

I remember back before I had a medically complex child. I could just willy nilly decide to completely rearrange our closets. Or whatever. But these days, I just don’t have that same amount of energy, because I spend a large chunk of energy on keeping another human alive, and being interrupted constantly by the various urgent needs of the human I’m trying to keep alive. (I am trying to keep ALL my kids alive, obviously, it’s just that one of them needs a bit more parental involvement!) I have to be purposeful about how I spend my time and energy, if I want to be sure to have enough for the important things – not just the keeping-the-child-alive things, but the being-a-fun-mom things and the being-present-for-the-other-kids things.

Separate the Necessary from the Feels Necessary.

Think through the things you do or think about regularly. Which ones are REALLY necessary? Which just feel necessary? Only you know which task goes in which pile, but it’s too easy fall into the trap of categorizing not really necessary things as “necessary” because they FEEL necessary. Doing my kiddo’s meds is necessary. Vacuuming the rug is not (usually) necessary.

One way to help you sort your “things” is to ask yourself “what are the consequences if this doesn’t get done?” If I don’t pay my bills, I have to pay late fees, or I have my water and electricity shut off. Paying bills is necessary. If I don’t dust the mantle, I have dust on the mantle. Not necessary. If I don’t cook dinner for one night, our family will survive. People will find something to eat. If I never cook again, our family will have poor nutrition and perhaps start losing weight. Cooking is not necessary, but ensuring everyone eats healthy food IS necessary. If I don’t mop the floor, I have a dirty floor. Mopping the floor is not necessary. (But when my son was immediately post transplant on high doses of immune suppression and rolling around on the floor licking things, vacuuming the rug and mopping the floor was a lot more necessary.)

I want to note, there’s a category of “not necessary” things that are things that bring you joy. I have a friend who loves baking bread from scratch. It isn’t necessary, but she enjoys it. These “not necessary” things should, in moderation, be considered to be just below the “necessary” things in importance. They’re important to your mental health.

Do the necessary things first. Do the not necessary but I love them things next. Do the not necessary things if you have leftover time and energy.

Eliminate, Streamline, and Delegate

Thinking still about all your “things,” what can you eliminate entirely? What can you streamline? What can you delegate?

Are there things on that “not necessary” list that can be eliminated? Your spouse’s workplace’s annual picnic that always stresses you out, for example? This year, just don’t go. Make up an excuse if you need to. Making the bed? Not necessary. Eliminate it, unless having a neatly made bed brings you enough joy to be worth the time and energy investment.

What can you streamline? Laundry? If your family has enough clothes to make it a week, consider only doing laundry every week. At our house, we wash laundry one day a week – my ten year old actually does this. It’s several loads, but it’s not so much that it can’t get done in one day. Then the next day, I fold it all. It takes an hour or two, but I set aside the time, put on a movie, and get it done. This is a much more efficient use of time and energy, compared to carrying laundry down and up the stairs daily, having to fold daily, having to walk to all the bedrooms daily, etc. (And, to be really honest, folding could be eliminated, as well. Plenty of families just dig clean laundry out of a laundry basket without any long term damage!)

Paying bills can usually be streamlined. First, as every bill comes in, we check the due date, and then put the bill into a folder marked BILLS that lives in the kitchen. We’ve shuffled due dates around over the years so I only have to sit down to pay bills once a month, unless the odd, unexpected, due-before-the-next-time-you’ll-pay-bills bill pops in. I have Pay Bills as a recurring event on my to do list, it pops in every month, and this is literally the ONLY time I think about bills. I only have to log in to the bank website once a month. I only have to sit down with that folder once a month. I only have to THINK about bills once a month. In reality, if you aren’t as much of a control freak as I am, you could streamline this further by just having all your bills – or as many as possible – auto-pay.

Really, any task that is regular and ongoing can usually be done a bit more efficiently by doing it in larger chunks – but you need to decide for yourself which way is easier – not just physically, but mentally. We don’t have a dishwasher, so we hand wash dishes. This would be more efficient if we let them build up for a few days… but seeing dirty dishes stacked in the kitchen makes me feel gloomy, so we wash dishes daily.

And finally, what can you delegate? I’ve had a handful of things over the years that I’ve just had to sit my husband down and say, “ok, look. I can’t do this thing any more. I need you to do it.” Washing dishes, for example. It used to be my job and then my daily task list with our medical kid just got too long, and now it’s his job.

I also highly recommend having older kids, lol. As my other kids have gotten older, they’ve taken over a LOT of my tasks for me, for which they are paid an allowance. It’s definitely convenient!

Make your Necessary items Easier

This requires some out of the box thinking sometimes. I have to get my oil changed, but I don’t have to be present for that to happen. I can use a facility that comes to me, or I can use a facility that will come get my car.

I have to feed my family, but I don’t have to cook every meal from scratch. I can do take-out, I can do meal kits, I can buy pre-cut vegetables, I can buy healthy meals that are half prepared from the grocery store. My community also has several options for services that allow you to purchase full, made from scratch meals.

Keep a To Do List

Make a list of all those “feels necessary” things that you were unable to eliminate or delegate. See, we’re not going to just not do them. Obviously, you can’t go forever without mopping. We’re just not going to worry about them quite as often, and we’re not going to waste energy thinking about them. Write them down. Make a list. Post the list somewhere. Every day (or week, whatever works for you), take 15 minutes and work your way through the list. Set a timer. When the timer dings, you’re done. Next day (or week), start where you left off. See – those things will get done. But they don’t need to take up your mental energy any more.

Say No

It’s OK to say no. Even to your own kids. Sometimes kid activities fall into “feels necessary” but they aren’t really necessary. You don’t have to let your kids sign up for tons of activities. One activity per child is plenty, unless one of them drives and can drive the others. If you’re the only driver, you have to take an honest look at yourself and your schedule and decide if you have the stamina.

What about extra family commitments? Aunt Bertha’s going to be in town and the whole family wants to plan a weekend full of activities!! It’s OK to say no. Or to say yes, but only for an hour.

What about literally everything else? Say no. Next time you’re asked if you’d like to serve on x group, or commit to joining y activity on an ongoing basis, just say no, unless you’ve really thoughtfully considered it and decided you do have the time and energy. It’s OK to say no.

Take A Break

If you’re feeling really snowed under, it’s OK to take a break from things, instead of fully saying no. Tell your book club you won’t be there for a few months, but you’ll be back in October. Tell your child’s therapists that you need a break for a month or two. Reschedule flexible appointments like eye exams. Sometimes taking a month (or more) long break from the daily grind is just what you need!

Get Organized

I feel like this piece of advice is almost worthless. Those of you who are naturally organized are already organized and those of you who aren’t, aren’t likely to become so. There are countless books, blogs, etc., about getting organized if you’re interested. Having a good system set up for records, for appointments, for medical supplies, etc., saves you time in the long run, and also helps you avoid mental clutter. If you always keep necessary paperwork in the same spot, you don’t have to waste mental energy stressing about where you put whatever piece of necessary paperwork you suddenly need.

Essentials Only During Crisis

During a crisis, pare down to only the essentials. Put off everything that isn’t vital. Afraid you’ll forget something entirely if you don’t handle it right then? Get yourself a file folder. Put everything in it, and write yourself a list on the outside. If it’s something with a deadline, write that in your calendar. Then you can stop thinking about it.

Take Advantage of Slow Times

BY RESTING FIRST! This is something I almost never do, but that doesn’t make it bad advice. When you have a slow period – things with your kiddo are going smooth, no new crises, etc. – REST FIRST.

When you’re all rested up, that’s when you can play catch-up on all the things you neglected during a crisis. Go find that folder where you stashed all the things, and start dealing with them!

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I hope these tips will help you find some peace by simplifying your life a little. Take what you can use, leave the rest.

14 Tips for Exclusive Pumping

This is a reprint/update of an article I wrote on Teddy’s blog several years ago. I hope it has useful tips for those of you who pump part-time, as well, though I have no personal experience with that.

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I am not an expert. I’m not a Lactation Consultant (though I have found most LC’s to be less than super helpful about the practicalities of exclusive pumping). I’m just a mom who’s been there/done that.

Let’s get something out of the way. Exclusive pumping sucks. It sucks in a unique way. But it’s also giving your child something that is absolutely irreplacable. And, you’re awesome.

Most of this information is stuff I found elsewhere, or stuff that was told to me by others, most notably Megan from All That Hath Life and Breath and Sarah C. This is a random collection of information.

1. Pump overnight. Personally, I had to pump at least once, preferably twice, overnight. Prolactin levels are evidently higher overnight, plus not having those long stretches without emptying my breasts helped keep my supply up. Women who are not constantly tottering on the edge of not having enough milk can probably drop one or even all overnight sessions.

2. Cycle a bit if you have unproductive pumping sessions. If I didn’t get a certain minimum amount during the 3 or 4 AM session, and if my breasts still felt full but nothing more was coming out, I would stop after 30 minutes, sleep for another 30 minutes, and pump again for another 30 minutes. If I needed to, I did it again again.

3. Hand express after pumping to get the rest of the milk out. This was a game changer for me. I could sometimes get as much as 30-50 ml more by hand expressing.

4. Keep records. My detailed records were my best friend. Not everyone has to keep a spreadsheet and make charts with their pumping data, but it would be useful to most people to track when they pumped, how long they pumped, and how much they got. Over the course of a week or two, you can start to notice trends.

My pumping log.

5. Massage your breasts. Massage and compress while pumping, take a break while pumping to massage, and massage before pumping.

6. Pump in the car! I mean, you’re just sitting there anyway, right? I used to hook myself up to the pump before pulling out of our driveway on our weekly drives to the hospital 2 hours away, then once we hit the long boring stretch of highway, I’d turn the pump on. If this is distracting to you, don’t do it, but as I actively tried to keep my mind occupied with anything OTHER THAN pumping, it was perfect.

7. Zone out. Or, as Sarah C says, watch your head space. Don’t look at the bottles, think about how much you’re getting, etc. Sleep if you can. Watch NetFlix, knit. I sometimes read to my kids, or we did some schoolwork. I sat on the bed and played with Teddy. ANYTHING except think about pumping. All the advice you read for Pumping At Work moms is to picture your baby, picture milk flowing, picture water fountains, think about your baby nursing, etc. But most of the EP moms I’ve talked to say that this does NOT work for them. Thinking of my baby, my milk, etc., just triggered deep emotions of sadness over the fact that I was not nursing him, and that didn’t lead to easy let-downs.

8. Try longer sessions. LCs consistently suggest that pumping sessions should only last 20 minutes. As you get accustomed to pumping, you can bump that up and get multiple let-downs. I was a one-let-down-per-session girl when I was just pumping 20 minutes at a time. If I pumped for 50-60 minutes, I usually got 3-4. And my breasts did NOT protest and move to a new state like I thought they might.

9. Get a good pump. Hospital grade. Rent one first if you want, then do the math on renting vs buying. I did not rent one, I just bought what I had used in the NICU because I already knew I liked it, and it was cheaper, over the course of a year, to buy. (With new laws since I was EPing, insurance might have to cover a breastpump, but I’m not sure they have to cover a hospital grade pump. Those Medala Pump N Styles are great for the part time pumper who also has a nursing baby to keep her supply up, but you don’t have that. Exclusive pumpers generally speaking *need* a hospital grade pump.)

This is at the hospital, but it’s my hospital grade pump.

10. Donor milk. If keeping your baby on breastmilk is important to you and you’re struggling, find some lactating friends and see if they’ll pump a bit for you.

11. Embrace the weird nipple shape. It is somewhat normal for your nipples to look swollen and misshapen after you pump. It doesn’t happen to everyone, evidently, but don’t be alarmed at how your boobs look when you take the pump off. They will go back to normal. Eventually. (And I’m talking, a few years after I stopped pumping, I stopped thinking my boobs looked all weird. It was totally worth it, though.)


Yes, I measured breastmilk with my 4 cup measuring cup.

 

Increasing Supply:

12. Power pumping or cycling. I personally had the most success with MANUAL means of increasing my supply. Pumping more often, pumping longer, power pumping (10 on/10 off for an hour), pumping 10 minutes every 30-60 minutes around the clock for a day or two, etc. When I started having low supply, I STARTED addressing the problem by pumping every hour during the day and making sure to be diligent about getting up at night. I did NOT get discouraged when those pumping sessions don’t yield much milk – they were merely putting in an order.

13. Supplement. Then I added in supplements. Teas never did much for me, even fresh herb teas, but some people do find they make a difference. Placenta pills (from my placenta) were useful. Fresh fenugreek (buy the seed and crush it and put it in capsules). Brewer’s Yeast (same thing – put it in capsules). Goat’s Rue, Milk Thistle.

14. Beer, Oatmeal, and Ice Cream. Most people I know swear by a nightly IPA for good supply. Eating oatmeal and ice cream may or may not help, but they can’t hurt. Lactation cookies (recipes are all over the internet) are tasty and at least something fun to eat while you’re pumping…

I just couldn’t resist including this picture of that little baby foot kicking the pump horns. Which hurt, by the way.

 

And a bonus tip:

15. Make your pumping space comfortable. You’re to be spending a lot of time there. I stole a rocker recliner from another room. I kept books and knitting and a phone charger there. I bought myself a DVD player with Wifi so I could watch movies or Netflix. I kept a water bottle in the fridge. (OK, not everyone will have a mini fridge near their pumping station, but I had one in there for breastmilk storage, to store pump parts between pumping sessions (ooo, hot tip #16 – wash pump parts daily, store in fridge between sessions), and to store Teddy’s meds and other medical things.