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!


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!

Surviving a Road Trip with your ADHD Child

I can think of few things I like to do LESS than go on a long road trip with my child, who has severe combined ADHD. But we’ve been working on our technique for a few years now and, thanks to frequent long-distance medical appointments, have had so very many opportunities to get this figured out. Here’s what’s worked for our family. If you have any other tips, leave them in the comments!!


You need to time your drive strategically. Will your child sleep in the car? Drive when they’re likely to sleep. Does your child take medication that wears off? Try to drive while the meds are in effect. Will your child absolutely not sleep in the car, ever ever? Don’t drive when they need to be sleeping. Since my ADHDer tends to launch out of bed, full of energy, regardless of time of day, we tend to prefer to start our road trips fairly early in the day. We are freshest – and most able to cope with hyperactivity – early on, so starting BEFORE his first dose of medication is usually a winning strategy for us. If at all possible, we prefer to try to arrive at our destination as the meds start wearing off.


Obviously, movement breaks are essential. Your family’s needs will vary, but we find that stopping every two hours works well. We get out and use the restroom, of course, but we also run around a little. We instigate a game of tag or follow the leader, or if the rest stop has a small playground, we get him using some of the equipment. Sometimes we pack a few outside toys (a ball, a frisbee, etc) and get those out for a few minutes. This is good for EVERYONE, not just those with ADHD!

Even if your child resists the idea of running around, they need to. Everyone needs to. Just do it.

Visualize the passing of time

While my other kids were able to conceptualize time to a certain extent, my ADHDer really cannot. Since he has a variety of diagnoses, we’ve not been too sure what causes this, but in talking to other people with ADHD, and other parents of kids with ADHD, it seems that this is a common theme. When I tell him we have 5 hours until our destination, and then he asks again in four minutes and I tell him it’s still 5 hours, he’s genuinely surprised by this. He’s not asking to annoy me. He’s not being a pest. He actually, literally feels like it might’ve been a significant amount of time because it FEELS like it has been.

As much as possible in his life, we try to make time more concrete and visible. We use a visual timer, for example. So, in the car, we try to use this same strategy. The visual timer doesn’t work that well, since ours only goes to 60 minutes, but our car’s GPS has a display that includes the estimated amount of time remaining in the trip. I almost always use the GPS for trips, even if I don’t need it, simply so he can LOOK at the numbers on the screen and see them counting down. (If I’m really honest, it’s not just him that needs to see those numbers counting down sometimes, lol. When we drive from Iowa to Utah, the grownups like seeing it, too.)

As we get closer, I use a timer app on his tablet or on my phone – it’s like a digital version of the visual timer, but can go for longer than an hour – and set it to about 10 minutes longer than the current GPS estimate. (Because I’d rather get there sooner than the timer.)

These things don’t totally eliminate the almost constant conversation about how far we are, but it does really help – he can SEE time moving, and he can somewhat answer his own questions. To encourage this, we also tend to direct many of his questions back to him. “How far are we from home?”  “Well, what does the timer say?”

Car Prizes

One of my kids’ favorite road trip things is the Car Prize. I started this about three years ago on a long trip. I decide in advance about how often the car prizes will come out. Every stop? Every other stop? Between stops? And then announce it in advance. “Alright, if everyone can keep it under control for another half hour, it’ll be car prize time!!”  (Use your own discretion here – there was a time when announcing this in advance would’ve just resulted in a total breakdown as the combination of excitement, a surprise, and the frustration of the car ride got to be too much.)

The car prizes serve two functions. One, they are something to look forward to that’s more immediate than arriving at your destination. Car trips are boring. This is something fun.  Two, they give the child something to do that’s new. I don’t buy boring toys if I can help it. I buy things that will take up some of the time, or that will provide some needed sensory input. The year my ADHDer was pinching everyone all the time because he needed that input, the car prizes were mostly just a TON of sensory type toys – playdough in a balloon, squishy toys, wax sticks – things that gave him that input he was seeking.

Car Prize ideas: mixed bags of cheap prizes like they sell for Halloween, or for doctor’s offices, etc.  Target Dollar Spot things when they go on clearance. DIY toys like playdough in a balloon. Fun edible treats if your kids eat orally. Wax sticks or reusable clings that can be used on the windows. Scented markers, or one of those pens with four ink colors in it. I also usually spring for a few more expensive prizes (I mean, like in the $3 range). I’ve found good prizes at party supply stores, craft stores, superstores, dollar stores, Amazon, etc. I am usually constantly keeping an eye out for cheap, fun, small things, especially after major holidays.

Note: some kids with ADHD and/or anxiety cannot handle knowing there is a surprise. My kiddo is getting better about this – and copes with car prizes fine because this is our routine. You’ll need to use your own judgement here. The goal is to make the ride EASIER for everyone, not harder, so if knowing there’s a prize coming up will mean your kid will just nag you to death about when does he get another prize, you’ll need to figure out how to make this work for you. (For example, for many things, my child can handle waiting, but he can’t handle not knowing what it is. For our most recent trip, I actually took him with me to pick out prizes. He knew what was in the bag, but not what he’d be getting each time. This is a compromise that works well for him. This is also what we do for birthdays and Christmas – he knows what the gifts are going to be in advance.)

End Prize

We ALWAYS have a prize for the end. And it’s usually not a physical prize, but it is something to look forward to. “When we get there and settled in, we can go to the pool!” if we’re staying at a hotel. Or “When we get there, we can go to Walmart!” (OK, because to my ADHDer, Walmart is basically heaven on earth. That child loves Walmart.) “When we get there, you can play with your cousins!” Choose something doable that your child likes – or choose something you need to do anyway that you can put a fun spin on. Getting groceries and picking out a fun snack, for example. Or, is there a playground nearby your destination that you can visit? Again, we’re mainly looking for something the child can look forward to.

This end prize, like the car prizes, is NOT a reward for good behavior. It cannot be taken away. It is a fact. It is going to happen, whether you feel the child deserves it or not.

I’m going to put a note here about visiting family. If you’re driving to visit family, DO NOT feel you have to skip this end prize because of judgy family. Your child’s needs are more important than Aunt Bertha’s. She’s an adult. She can cope if you decide that your child’s end prize is a half hour at the park down the street. Consider warning Aunt Bertha in advance. “Hey, Aunt Bertha! We’re so excited to see you! When we get there, we’re going to stop at your place really fast to unload the car and then we’re going to head out to the playground for a bit. Little Timmy is going to need to get out some of his little boy energy after so long in the car. Then we’ll come back and stick around.”

Strategic Food

Assuming your child eats orally, you can use food strategically during road trips. It starts with awareness of what your child will eat and how food affects your child. Don’t pack snacks that are going to set your child off. BUT you can pack treats (treat: something they love to eat that won’t negatively affect behavior) to use a car prizes. The key to making this work is to keep it a secret. I tend to save the food stuff for when we’re hitting one of those “everyone’s so irritated from being in the stupid car forever” phases. “Hey, look what I found! There’s just ONE for each person, but I have granola bars!!!” or whatever. Even though my kid isn’t really oral eating, he does have foods he likes to nibble at, and he get just as excited over, for example, a snack pack of Fudge Stripes as the other kids.


Kids (and adults) with ADHD tend to love novelty. When we know we have a long trip coming up, I start hoarding new things. That DVD we planned to buy anyway? I buy it in secret, hide it, and keep it stashed until our trip. Ta Da! It’s like a present, but not really because we planned to buy it anyway. I also usually try to find a few free apps for his tablet that he’s never seen before, maybe download a few new movies from Movies Anywhere. It’s not new stuff I bought – it doesn’t cost me any more money than I would have spent anyway – but it’s new TO HIM.


Even when – especially when – your child doesn’t seem to “deserve” your praise, he or she NEEDS it. And considering that kids with ADHD tend to hear FAR more negative messages than positive ones, kids with ADHD need it even more. Find things to praise throughout your trip. On our recent trip, I thanked my child for not hitting his siblings, for example. (I phrased it as “thank you for keeping your hands to yourself.”) Sometimes when things seem to be heating up a little, we thank him for being so patient so far, and emphasize that we know it’s getting boring, but in x time, we’ll be stopping again to get out.  You can almost always find something to praise.

Physical Space

If you can swing it, seat your ADHD child away from other kids. If your ADHDer is at all like mine, when he starts to get bored, he looks for ways to create excitement. An easy way to create excitement in the car is to start a fight with siblings. “ho, hum, I’m bored,” his subconscious mind says. “What can I do to spice things up? ooo, hit your brother! do it! hit him!! He’ll yell and then he’ll tattle and then mom and dad will get all angry face and there’ll be a lot of yelling and THAT will be exciting. Do it, Do it, Do it!!” Except this all happens in a flash with my son being none the wiser. He doesn’t know why he does it. Before he can blink, he hits his brother, and his brain gets that boost it was looking for, as the fallout from that creates some excitement. One trip, we bought a large piece of foam board and stuck it between the carseat that held my ADHD son and the booster that held my three-years-older daughter. That helped a lot. Since then, if at all possible, we move one of the kids to the third row in our SUV and seat the other two on either end of the middle row, with a cooler in between them. The other kids are close enough to talk or play together, but not close enough that he can hit them if the mood strikes.


I find I need to work on my own patience a LOT. Deep breaths. Consciously relaxing my muscles. Reminding myself that he’s not being naughty on purpose. Reminding myself that he doesn’t understand how time works at all. Reminding myself that he’s struggling, too.

Hopefully, this gives you some ideas on how to survive a long road trip with your child who has ADHD! I know following these strategies has made a huge difference for our family.

Talking to your team about a blenderized diet

*I am not a doctor. I am not providing medical advice.*

You’ve done some reading, you’ve looked at formula ingredients lists, maybe you’ve talked to others who feed real food through a feeding tube, or maybe you’ve just realized that you’re human (or your tubie is a human) and there’s no medical reason you/they can’t eat food like all the other humans….

Image by silviarita from Pixabay

Now what?

Now it’s time to talk to your medical team. While some who feed real food do so without letting their medical team know, I personally believe it’s always best to keep your providers informed. However, the experiences of those who’ve made the switch to real food are so widely varied. Sometimes their medical providers are entirely on board from the start. Sometimes medical providers need a little convincing, but they’re willing to be tacitly supportive, if not actively supportive. And sometimes they’re just entirely resistant to the idea.

We’ve got your back, whatever happens. Keep reading for suggestions on how to start the conversation with your medical team, as well as some ideas on how to handle the response from your providers – whatever that response is.

My purpose here isn’t to talk you into a blended diet, or to provide you with research or factual information on the benefits of blended diets. I feel like Crunchy Tubie Mama does an excellent job of making the case for blended diets and providing tons of facts and research – I couldn’t even begin to duplicate that. Go check out her website, and consider joining the Blenderized RN group on Facebook.

Before You Even Think About Talking to Your Team

Do the research. Is it safe for you or your tubie to be fed food? Does your or your tubie’s condition have dietary restrictions? Do you know anybody with your or your tubie’s condition who eats orally? Does your hospital/your nutritionist, in fact, have patients with your or your tubie’s condition who eat orally?

How much do you know about nutrition? Do take some time to familiarize yourself with the basics of nutrition – even if you’ve been feeding oral eaters for your whole life. Get a sense of how many calories you need, how much protein/carbs/fat and where you might get those nutritents from, read up on how to ensure you consume a varied enough diet to make sure you’re getting sufficient quantities of the micronutriets, etc.

But while you’re doing all that, also consider that few American humans eat 100% of the RDAs of every nutrient every day. Some days, we oral eaters consume a LOT of Vitamin C, and other days not so much. Some days, we get enough calcium, some days we don’t. A little variety is pretty normal. Is it IDEAL? I don’t know. But I do know it’s TYPICAL.

Starting the Conversation

Don’t ask, tell. You’re not asking for permission. You’re informing your providers that you’ve made a decision and you’re letting them know. But you’re being very polite about it.

“I’ve been reading about using a blended whole foods diet with a feeding tube, and I plan to start doing that.” (If this feels too aggressive for you, you can go with a variation such as “and I’d like to start that,” but be careful not to say anything that at all sounds like you’re asking for their permission. You’re not.

From there, you can ask for their support and help. “Are there any specific dietary guidelines I should follow?”  or “I have a pretty good idea how I’m going to start, but if you have any suggestions, I’d definitely take them into consideration.”  (Notice the tone here – you’re taking what they have to say as advice, but you’re the one in charge. Notice that I didn’t type “Do you have suggestions on how I should start?” Important aside: be sure to have done enough reading by this point that you’re telling the truth when you say that you have a good idea how to get started.)

You’ll probably want to know what your calorie goal is, if you don’t already, and if there are any restrictions or requirements for your diet. (You can research this for yourself ahead of time – the internet is your friend here. How many calories would a typical person of your age, size, and weight goals consume? Do you have a medical condition that might impact this? Does your diagnosis have a Foundation of some sort, and does that Foundation have information on good dietary choices? For example, my kiddo is a kidney transplant recipient, and the National Kidney Foundation is a great source of information about nutrition specific to kidney disease.)

A good question to ask of your medical providers is “what would you recommend for oral eaters?” Remember, you’re going to be feeding the same diet you (or your tubie) would be eating if you (or they) were doing it by mouth – so you can follow the same advice they would give those eating with their mouths.

You could ask how many patients they have feeding a whole foods diet. “How many other patients in this clinic are using a blended diet, that you’re aware of?”

Above all – stay positive and upbeat here. You’re excited. You’re happy. You’re enthusiastic. You’re not going to let any nay-saying discourage you.

Bonus hot tip. Don’t use the word “internet” or, especially, “Facebook,” unless your provider is supportive right out of the gate. These words too often cause providers to assume you got your information from Uncle Bobs Info N Stuff dot com.

Push Back Against the Ignorant Advice and Concerns

On this specific subject, it’s like providers lose their minds sometimes. You might hear “a blended diet sounds great, but we’re too worried about clogs for that to be a viable option.” With a quality blender and the right technique – and sometimes using a strainer – clogs are rarely a problem. Assess this concern for your own situation. If you have a button, for example, and you DO clog it up to the point that it can’t be fixed, it’s a simple matter to swap it out at home. This is not a big deal. (And bear in mind that MOST clogs can be avoided or fixed.)

Another one is “oh, that sounds great, but your feeding tube is just too small for this to work.” Yes, this might be a valid concern, but chances are it isn’t. Most people over the age of 1 have a tube that’s big enough to handle real foods.

Or how about “a blended diet is too risky from a bacteria standpoint – formula is sterile.” Yes, formula is sterile until the jar’s opened, then it’s just like everything else. Are you using sterile feeding tube supplies (the feeding pump sets are not sterile)? Likely not. You’re using CLEAN supplies. If there are people with your diagnosis eating food orally, sterility likely isn’t a legitimate concern. Reassure doctors that you’ve cooked food before, you know basic food safety rules, and you’ll always always use an ice pack if you’re going to have your feed out for longer than an hour. (And then actually do all that, there’s no reason to give yourself food poisoning and then look like an idiot in front of your doctors.) (We’ve got some awesome products to help you out with this – insulated feeding pump bag covers, insulated syringe totes, etc.) If it would help your providers feel better, they can go over food safety with you.

If your Provider is on Board

That’s great! Ask them for resources. Ask them for guidelines on nutrients. They could hook you up with prepackaged blended foods (Nourish or Real Food Blends). They can help.

If your Provider needs Convincing or is Reluctant

You can approach this a few different ways. You can just get started and let them come along for the ride. Or you could try to talk them into being supportive. I personally tend to go path of least resistance on many things, and in this case I personally would just go ahead and let them come along for the ride, but if you want to bring in research, or ingredient lists, or maybe compare the nutrient info of their recommended formula against the USDA’s recommendations… go for it. Note, I’d try to avoid committing to following any specific recipe. A commitment to START with their recipe, fine. But don’t back yourself into a corner on this one. I’ve seen so many hospital-provided blended diet recipes, and it’s difficult to believe they were written by people with college degrees related to food. Don’t lock yourself into using these formula-duplicates.

If your Provider is Completely Against the Idea

This is tricky. I cannot tell you what to do, but you still have options. I decided, for us, to just do it anyway. I told them I was going to start giving real foods, let the subject go, started giving my child bits of baby food, and then let them know a few months down the road how it was going. I 100% knew that food was safe for my child, and I knew the dietary restrictions that went along with his condition. Another option is to find new providers. If you have other providers available – even if you have to drive a bit more – this might be better in the long run. I certainly don’t think any doctor who won’t support me in something like wanting to feed real food instead of chemicals, sugar, and oil is really worth my time or my money. We faced a bit of a battle at first with our providers, but they came around pretty quickly once we got started. We would not still be with them if they hadn’t.

Please note, I do not ever advocate LYING to your providers. About anything.

Does your Provider Have a Valid Point?

Some people truly are not candidates for using real food. FEW people, but it’s not outside the realm of possibility. If your doctor seems to truly believe real food isn’t an option for you, you need to evaluate what they’re telling you. Be sure to get a clear answer about WHY you can’t have real food. If it’s due to your diagnosis, are there others with your diagnosis who eat real food (with their mouths)? What would they recommend if you were oral eating?

This is definitely something that requires a second opinion. Ask other blended diet users (not your doctor) to recommend blended diet friendly doctors in your vicinity, and make an appointment for a second opinion before making any final decisions.

HOPEFULLY at this point, your providers are at least tolerant of your blended diet ways, and you’re well on your way to experiencing the joy of blending up just plain ol’ food for your feeding tube! Enjoy!

Reducing Interruptions with ADHD

Everyone knows that having children means dealing with interruptions. But ADHD kids can take interrupting to a whole new level! Try this technique to reduce (or even eliminate?) interruptions. Though I titled this post “Reducing Interruptions with ADHD,” this is actually an excellent technique for ANY child – certainly not just the ADHDers in the world.

First, I’m going to describe the technique, then I’ll walk you through implementation.

We’re going to teach your child to get your attention unobtrusively and without talking. Whenever they want your attention, and you’re talking to someone else, they’re going to put their hand on your hand (or shoulder, or arm – you can pick a body part). To acknowledge that you know they want your attention, you’ll use your other hand to cover their hand. They will wait patiently until you can reasonably wrap up your conversation.

It sounds so simple and I also know you’re sitting there thinking, “yeah, sure, right, lady.” Stay with me here. It’s all in the implementation.

A child rests his hand on a man's hand.

Before you start. Before Step 1. You have to decide this is really a thing you want to fix. You have to want it bad enough to stick with it longer than you stick with your New Year’s resolutions. You have to want it bad enough to stay positive about it for months. Maybe months and months. You have to recognize that this is HARD.

Step 1. Explain to the child what the expectation is. “Hey, kiddo, we’re going to work on a new skill. When you want my attention and I’m talking, instead of just starting to talk, you’re going to put your hand on my hand. I’ll put my hand over yours so you know that I know you want to talk to me. Then you’ll wait very patiently and very quietly. When it’s your turn to talk, I’ll let you know.”

Step 2. Be positive and confident. “I’m sure you’ll do GREAT!!”

Step 3. Break the task into achievable pieces and Establish a reward. Most ADHDers respond well to external rewards – they don’t work so great on intrinsic or internal rewards. We use a home currency for reward purposes, and it works really well! For my kiddo, when we first started this, we rewarded for remembering to touch my hand at any point. Once he was doing that well, we changed so we only rewarded if he remembered without any reminders and without FIRST starting to interrupt. Now we’re working on the waiting patiently part, so we reward only for achieving BOTH remembering to touch my hand without interrupting AND remembering to wait quietly. “It might be hard to remember at first, BUT you’ll earn TWO fuzzies for every time you remember to touch my hand when you want my attention!”

Step 4. Help. A lot. Have low expectations. Expect this to take a while. We worked for a few months on just remembering to touch my hand. He’d stroll in and start jabbering at me and I’d just look whoever I was talking to direct in the face, pointedly NOT looking at Mr Interrupting, and I’d shove my hand in his direction. Sometimes I’d reach over for his hand and PLACE it on my hand. Yes, I still rewarded this.

Step 5. Train YOURSELF. Oh. My. Gosh. How many times did I forget he was supposed to touch my hand, and I just immediately stopped whatever conversation I was having in order to address him? Wow. Habits are hard to break.

Step 6. Be consistent but be Kind!! This is a learning process and it’s also establishing a new habit. New habits take a while to become…well, to be come habitual. Do NOT expect overnight success. My kiddo also has learning difficulties, so it’s hard to make a comparison to other kids, but we’ve been working on this for a year, and we’re still working on the idea that “waiting patiently and quietly” does not mean “waiting while narrating your experience out loud.” (He narrates his life a lot – so while he’s waiting, he says “I’m waiting. I’m waiting. I’m still waiting. This is taking ages and ages.” I’m not sure that his internal dialogue works quite the same way as most people’s, and that may play a role here in making this step particularly difficult for him. He also narrates many other aspects of his life.) If your kiddo forgets – when your kiddo forgets – you respond with a kind and gentle reminder. Not with discouragement or exasperation. Don’t make this yet another thing he/she gets in trouble for. Try for ONLY positive feedback, and gentle reminders. NO negative feedback.

Step 7. Slowly back off on the rewards. With Fuzzies, our home currency, we review what earns a fuzzy on a regular basis. Things that have become habits, he “graduates” from. “You’re doing such a great job on this!! I think you graduated!! You’re like an expert on X now! Yay!” Since we only reward a small handful of things at a time – the things we really want to focus our energy on – this allows us to move out the old things and make room for new things.

Step 8. Even after your kid has “graduated” from working on this, be ready for backsliding, for reminders, and to possibly add it back to the “actively working on” list. That’s just life. Even non ADHD adults do this – you forget a thing once, and then you forget it again, and before you know it, you haven’t been to the gym in a year, right? You kid’s just a person, too. He or she will forget from time to time.