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!

.

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

Advertisements

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.

—–

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.

19 Feeding Tube Hacks to Make Your Life Easier!

Are you new to tubie life and overwhelmed? Maybe you’re a long-time feeding tube user, but looking for some new ideas? These essential feeding tube hacks will make life with a feeding tube just that much easier!

Some are specifically for pump feeding, some are specifically for bolus feeding. And – we’re working on a future list JUST for blenderized diet hacks!!

1. Modify the bag

If you use an Infinity pump, you can turn your feeding set (the bag) into a gravity set with this hack. (A gravity bag allows you to feed using just gravity, no pump.) This modification also allows you to more easily feed a blended or thicker diet through the pump with fewer alarms and clogs. Look at the cartridge part of your feeding set (the hard plastic part with the blue). One of the blue tubes has a picture of a drop of water on it. Pull that off. Underneath, you’ll see what’s in the picture. See the part I circled? It’s like a little knob? Cut, snip, or break that part off. (I prefer to just bend it back and forth until it breaks off.) Reassemble the cartridge. Voila. WARNING: If you’re feeding a liquid, it will now run straight through the tubing with nothing to stop it.

2. Snap front sleepers

If you have a little Tubie, quit buying expensive modified clothing, and quit cutting holes in your baby’s clothes! Just buy some regular, off the shelf, snap-front sleepers or one-piece outfits. They are made by Carter’s, Kushies, Burt’s Bees, and I found a variety of other brands on Zulily and Amazon just now. These can be harder to find in larger sizes, but Carter’s makes snap front bodysuits up to 24M, and they also make little rompers (short sleeves/shorts). Burt’s Bees one piece long sleeve/long pants outfits seem to go to either 18 or 24 months, as well. Much past 2T, it’s hard to find one-piece outfits at all, but overalls allow easy access while still keeping the button or PEG covered.

3. For nighttime, route the tube up the pants leg.

Got a slightly bigger Tubie? Many parents find it’s best to route the feeding tube up the child’s pants leg at night and position the pump either near their middles or near their feet. It not only keeps the tube away from their neck at night, but helps keep things less tangled as they roll around.

4. Make any backpack into a Tubie Backpack

You can use Cord Clips to attach your feeding set (either on its own, or inside an insulated cover) to any backpack. We find we have fewer alarms if we then set the Infinity pump on the side opposite where the tubing goes in and out, and then route the tubing out the backpack where the zipper opening is. No special, expensive backpacks necessary. Use whatever you have onhand, or buy a normal backpack!

5. Get a longer hang time with an insulated bag cover.

Insulated covers for your feeding sets allow you to have a longer safe hang time. Add an ice pack, and most of the time, you can safely hang a feed all night without having to refill – or carry a feed all day at a safe temperature without having to refill. These really make tubie life just so much easier.

6. Prep and label meds and feeds

If you feed bolus via pump, you can prefill the bag (or multiple bags for the day if you have the supplies) and label it with the time the feed is to be given using a Sharpie. We always store our feeds in glass jars (even back when he was on all breastmilk) and label the jar with a Sharpie. Sharpie washes right off glass jars with a scrubbie. (In the case of breastmilk, I labeled with date pumped, volume, and whether it was fresh or defrosted.) If you have liquid meds to be given at different times, check with your pharmacy, but many meds can safely be pre-filled in syringes. Find some containers, label them with either the time the meds are to be given, or with the name of the meds – whatever works best for you.

Some meds may need to be kept in the dark – in this case, cover your cup with a dark container. Some meds need to be kept in the fridge. I didn’t take a picture, but I have a set of labeled cups in the fridge, too. And some meds cannot be pre-filled in syringes. For those meds, I find it works easiest for me to put an empty syringe in the cup, then add a note to the cup, in the form of another label with the medication name. Then at med-time, both the note and the empty syringe remind me to draw up that med, and having the empty syringe right there with the other pre-dosed meds means I don’t have to take the extra step of reaching over to the empty syringes box. Which doesn’t sound like a particular hardship, but I prefer to cut out extra steps whenever possible!

PS, I keep my cups on top of our dorm fridge, which sits on the top shelf of some baker’s shelves in the bedroom. They’re at the top of my reach, and safely out of reach of the kids. Because it’s so high, I a) literally never see the top of that fridge, which is how I never realized it’s kind of dirty  b) toss empty syringes into the “dirty syringe” bin there behind the cups, evidently spattering bits of medications across the wall directly behind the bin, and across the top of the fridge. I guess you might want to avoid this by PLACING your used syringes into your Dirty Syringes bin, instead of throwing them like you’re on the all-star basketball team.

7. Dirty Syringes Bin

If you can at all avoid it, don’t wash (medication) syringes every day. (Wash food syringes every day!!) If you’re new to liquid medications, it might take you a while to build up a large enough stash of syringes to wash weekly. I personally just bought a pack of each size of syringes that we use regularly from a medical supply store (actually it was a vet supply store, but they’re the exact same syringes humans use) so I have a gajillion of them, but you can build up a stash just with what the pharmacy gives you (always ask for extras!) Put your used syringes into a Dirty Syringes Bin, and wash either weekly or when you run out of any particular size of syringe and need more.

Caution: keep a watchful eye the first several times you do this. We have found a few medications that even just that bit left in the tip of the syringe would get really gross sitting around for a week. Syringes with those meds need to be rinsed out same day. Most of the time, though, a good soak in hot soapy water loosens up any sticky meds, and a few good swishes of soapy water and then a good rinse clears out any leftover meds, even if they’ve sat around for a week. I really hate washing syringes, but having a whole bin means I can kind of get into a zone with it.

8. Give syringes a longer life with nail polish

Syringes tend to have one of two problems. Either the rubber tip stops functioning/gets stuck/breaks, or the numbers wear off. Cover those numbers with clear nail polish, and you’ll give your syringes a much longer lifespan – and you’ll dose your medications more safely over time!

9. Tote prefilled syringes with insulated ease

Do you feed Bolus feeds? One way to make that easier when out and about is to prefill your syringes, and then carry them in an insulated case. This avoids having to fill syringes away from home, which can get messy and inconvenient, and it’s faster, too!

10. Getting supplies you didn’t even know existed

When you’re inpatient, if you see the hospital using supplies you don’t get at home but seem super helpful, you can do two things, neither of which involve stealing. First, ask them if you may take whatever it is. If it’s disposable, chances are they’ll say yes. We’ve never had a hospital turn us down when we asked to save something noninfectuous that they were going to throw away. Second, ask for the REF number. Then ask your supply company if you can get some. Using the REF number helps your DME find the right part.

11. Command Hooks

Command hooks are so very very handy if you use feeding sets with your tube. You can stick one almost anywhere you might want to hang a bag. Some people use Command hooks next to the bed, put the feeding set and the pump in a backpack, and hang the backpack from the hook for overnight. Some people – including us – use Command hooks in other places around the house. For example, we almost always do a feed while doing school (we homeschool) so I stuck a hook next to my tubie’s spot at the table. You can hang just the feeding set and place your pump on a nearby flat surface, or you can put the feed plus pump into a backpack and hang the backpack.

12. Carabiners

Carabiners are the other magic way to hang a feed. We use carabiners (or Velcro ties) to hang feeds in the car (from the carseat, from the headrest, from the grab bar above the door), in places where a Command hook won’t fit (backs of chairs), and from the stroller.

13. Prime the Infinity without a pump

One thing about the Infinity pump – it primes SO SLOWLY. Prime faster with a manual prime – before you load the cartridge in the pump, find the blue part with the water drop on it. Push it inward as shown in the picture. Hold the bag up in the air. Voila. Instant priming.

14. Clean your extensions easily

First, if you do continuous feeds, flush the tube regularly. I think the recommendation is to flush with water every 4 hours. This will help with food/formula build-up in the extension. If you bolus, you should already be flushing after feeds.

The easiest way to clean extensions is to fill a container with warm soapy water, attach a syringe to the extension, and pull, push, pull, push a few times, then rinse. I like to follow up with a good, strong squirt of water to the part where the syringe connects.

If that isn’t cutting it, use vinegar, then soapy water, then a rinse. Still not clean? Fill the extension with vinegar and let it sit for a bit.

Many people swear by squeezing the clamp but not quite shutting it all the way and pulling it up and down the length of the extension – it provides enough friction to get those stuck-on bits. You can also get extra long pipe cleaners, but you might find that using the cleaning brushes they sell for hydration backs that backpackers and other use is both easier and faster.

I need to add that the addition of EnFit makes cleaning extensions a bit more challenging. EnFit manufacturers recommend cleaning the moat areas with either a toothbrush or a specially designed EnFit brush, because you need another thing to keep track of. We haven’t switched to EnFit, so I don’t have any direct experience with this.

15. Cap 60 mL syringes with old extensions

Do you use 60 mL syringes for bolus feeds or flushes, but your syringes don’t come with caps? (First, how is this even a thing? Shouldn’t all syringes come with caps. Tubies need to go places, too!) Use old extensions. Just clamp and cut off the extra. Throw some superglue in there if you need to feel extra secure.

16. Use your phone alarms

Having trouble with missing feeds or medication times? Get yourself a dedicated alarm app just for tubie things if you like, or just use whatever app you use for your other alarms. Pick a dedicated alert tone JUST for feeds and meds (or one for feeds and one for meds, which is what I do). Then set an alarm for every medication time and every feed time. And DO NOT clear the alarm until you’ve started the feed or administered the medications.

17. Know your extension

Top – Y-port Right-Angle extension. The top end has a Y-port (one for feeds, one for meds – or if you’re using Enfit extensions, both ports are identical) and the end that connects to the button is a right angle. This is a narrow-gauge tube. This is what most supply companies send you by default, but you do have other options.

Middle – Bolus Feed Right-Angle extension. The top end has a bolus feed opening (or for EnFit, it just has one Enfit port) and the end that connects to the button is a right angle. This is also a narrow-gauge tube. This is my personal favorite for pump feeds. I use the Yport for medications, and then switch to the Bolus right angle for pump feeds. There’s no medication port to pop open.

Bottom – Bolus Feed Straight extension. The top end has a bolus feed opening (or the one EnFit port) and the end that connects to the button is straight. This is a wider-gauge tube. This is my favorite for syringe feeds. It makes pushing SO MUCH EASIER than trying to use the tiny right angle tubes, in my opinion.

18. Keep those connections secure and covered


Med ports can pop open. Curious little fingers can pry them open. Adults with dementia or other neurological concerns can absentmindedly – or purposefully – pull the tubes from the extensions, or pop open the med port. You can tape things together and tape the extra ports closed, depending on your situation. You can also purchase connector covers (they’re available in several styles – I like our own style, obviously, but there IS a variety of styles available – including hard plastic ones) that snap around the connections to keep them padded, safe from fingers, and safe from accidentally bumping open.

19. You don’t have to hang the Infinity bag

Though I’ve given numerous tips for hanging feeding pump bags – you actually don’t have to hang the Infinity bag. After you’ve added your feed, prime out all the extra air (hold the bag upside down and prime the tubing using the pump – this will go faster if you squeeze out as much extra air as you can when you put the cap on the bag), then lay the bag on any available flat surface. Infinity doesn’t need gravity like the Kangaroo bags do, so you can lay them down instead of hanging.

 

 

 

 

Simple Meal Planning for Special Needs (or other busy) Families

It’s 5:30. You’re tired. The kids are tired. They are whiny and difficult. You’re totally out of ideas for dinner.

Sound familiar?

This is the nightly or almost nightly routine for many, many families. But it doesn’t have to be!

I am not here to tell you WHAT to cook. I don’t have recipes for Green Veggies Your Kids Will Love. But I do have a handful of tips to help busy moms with meal planning so you don’t keep finding yourself in the kitchen at 5:30 trying to figure out what to make for dinner using leftover spaghetti and some eggs while your kids destroy the house and whine…

I am a huge proponent of planning ahead. Why?

  1. Saves time. You only have to think about what you’re making for dinner (and breakfast, lunch, and /or snacks as relevant) one time for the week, month, season, whatever, instead of doing it every night. This means searching for internet recipes, digging through your recipe cards, etc., once.
  2. No thinking when you’re tired. I check the menu in the morning to confirm when I need to start dinner, set an alarm in my phone to remind me, and then at dinnertime, I just make whatever the schedule says.

I personally plan out meals 1-3 months at a time, and there’s no reason you can’t do this, as well. But I actually recommend starting slow. Try to plan all of next week to start. Do that a few times before you do two weeks. Then try a month. Two months. And so on.

So how do you plan that far ahead? Read on, my tired friends!

  1. Let go of the idea that you need infinite variety in your meals. You do need variety in what you eat. But nobody’s going to die of malnutrition if you eat the same meal more than once in a month. Let go of this idea that you’re failing at parenting if you don’t serve your family unique dishes every meal.
  2. Let go of the idea that you can’t know what you’re going to be in the mood for in advance. Well, actually, we’re letting go of the idea that it matters what you’re in the mood for. First, you can always make a last-minute change (more on that later), but saving yourself stress trumps cooking exactly what you’re craving at that moment.
  3. Honesty. You’ve got to be really honest with yourself to make meal planning work. Didn’t know you were signing up for soul-searching, did you?

And now for the practical how-tos.

Plan to plan.
The first step is to decide how you’re going to record these planned-ahead meals. On a paper calendar? In a notebook? Electronically? Whatever works for you. I use a spreadsheet I made myself that has space for Breakfast, Lunch, Snack, Dinner, and Groceries for one week per page. I print them out and stick them to the fridge. For the sake of simplicity, I’m going to use the phrase “meal planning sheet” here to refer to “however you decided would work best for you to record your planned meals.”

Check your Calendar.
Get out your personal calendar. Mark down onto your meal planning sheet anything that might impact any of the meals you intend to plan. Appointments, school breaks, out of town guests, clinic days, therapy, whatever. At my house, pretty much everything might impact my meal plans, so I tend to basically copy my personal calendar onto my meal planning sheets, using abbreviations. The purpose isn’t to use the meal planning sheets as a calendar, but rather to remember the other things happening in my life as I plan out meals.
I think this is one of the primary steps that most people leave out. Your daily schedule really does impact your meal planning – don’t skip this.

Greatest Hits Recipes
Grab (either physically or mentally) your list of sure-fire hits and mostly sure-fire hits. Meals you have tried that most people ate more or less willingly, and that use ingredients you either commonly have or can easily get.

Take a Minute to Honestly Consider Yourself
Be honest about your ability and willingness to cook. I don’t mean whether you’re a good cook, though obviously you should only pick meals and recipes within your skill set unless you love cooking and learning new things at 6:00 at night with your kids being terrorists.
I mean subjective ability and willingness. For example, after long clinic days, my ability to actually cook is near zero. I’m just wiped out. I plan take-out on those days. Days when we have five local appointments, all spaced just far enough apart to mean that we’re spending the whole day entering and exiting the house impact my willingness to cook much – I plan really easy meals for those days. Grilled cheese with tomato soup, for example. You may notice that certain days of the week are harder for you – I can’t ever seem to cook much on Thursdays, for example. I don’t know why. Our Thursday schedule is usually pretty easy. I’m just kind of over it for the week on Thursday. I have to plan easy things for Thursdays.
This is the other place I think people tend to run into trouble. There’s no shame in admitting “hey, this day looks like it’s going to be a humdinger. I can’t manage more than cereal for dinner.” It’s fine.

Honestly Consider your Family
I talk more about picky eaters below, but on days when you know everyone’s going to be worn out and not at their best, probably don’t plan to serve something that you’re not sure they’ll like, or try something new. The days when everyone’s going to be extra tired and cranky are days for meals you know will go over well.

Use your Kitchen Appliances
Plan to use your kitchen appliances strategically. On days that are busy in the late afternoon but less so in the morning, plan a crock pot meal, for example.
Another way to use your kitchen appliances strategically is to group the use of infrequently-used appliances. If you don’t use the food processor much, but you have one recipe you LOVE that uses a food processor, plan another meal or two for that week that also use the food processor – if you have to haul that thing out of wherever you store it, may as well get some good use out of it while it’s out.

Don’t be afraid to repeat.
For many of our meal plans at our house, we more or less repeat every 4 weeks for a few cycles. All summer, we usually have grilled sandwiches with salad weekly. People do Taco Tuesday every week. I know a family that has soup every Wednesday. Repetition is fine. You’re not trying to win any international cooking prizes here.

Mix in Some New Recipes.
I like to go through my meal planning sheets once, sprinkling in the tried-and-true recipes as I go. Then I go back and fill in with new things that I find either in cookbooks or online.

Get Some Help.
Your spouse or older kids can take over cooking either regularly or occasionally. My oldest is a teenager now and is responsible for dinner one night every week. My husband takes weekends, and sometimes I also assign him other nights during the week. (My husband is a great cook, but even if your spouse isn’t that great, they likely know how to make basic, easy things – or can be taught. Sometimes this needs to be a whole conversation that starts with “Hey, I’m just exhausted. I’ve noticed I’m more exhausted on days when we have long clinic appointments. I just really cannot cook on those days, I walk in the door ready to drop. I need you to take over for me those nights. Do you want to plan what you’ll make or do you want me to find something for you?”

Plan Ahead for Groceries
Leave space in your meal planning sheets for groceries. As you decide what you’re going to make, write down every ingredient that isn’t one of your household staples. (Like, I don’t write down flour, because we always have flour. But I do write down Onions, even though we almost always have onions, because sometimes we run out.) When you’re preparing the grocery list for the week, just look at your meal planning sheet, compare the ingredients you need to the ingredients you already have on hand, and write down anything you don’t have.

Plan B Meals
Have a handful of “we always have the ingredients, we mostly all like it, and it’s really easy to make” meals in mind. For our family, it’s spaghetti with sauce (we literally always have these things) and egg sandwiches/rollups (we have chickens so we always have eggs). Even with the very best planning, you’re going to have the occasional day where you look at the planned meal and think “oh, gross.” or “ugh, I do not feel like making that at ALL.” Then you can fall back on your plan B meals.

Stick With Your Plans
Don’t give in to the temptation to cook your fallback meals very often. The key to successful meal planning is to stick with your plan. And it’ll get better the more you do it. Not only because it becomes a habit, but also because you’ll get better at planning. (It took me months to realize that I never followed my plan on Thursdays, for example. Then I was able to start planning easier things on Thursdays.)

Picky Eaters
You might be saying to yourself. “Well, that’s fine for you, but I’ve got a picky eater, I can’t plan ahead.” I’m not here to tell you how to run your house. I’ll just tell you what works at our house. At our house, I have a kid who’ll eat most things without complaint (not always with enthusiasm, but usually without much protest), a kid who would strongly prefer to eat just a handful of things over and over, and then a non oral eating kid. The kid who doesn’t like new things, we have a rule. She MUST clear her plate of what we put on it without whining, delay tactics, etc. We put usually very small amounts of everything we have, minus a few things we know are going to be hard nos. The amount of food varies with how likely we think it is the things will be eaten. After that, she may fix herself something else to eat as long as it has protein, or she may wait patiently until someone is available to make her an alternate food. Some meals, we just go ahead and make something we KNOW she’ll eat and have it ready. I stopped trying to cater our meals to her limits, because I got bored of eating only food she’ll eat. She doesn’t have the oral aversions and sensory issues that our friends with autism sometimes have, I’m not trying to pretend this is that. But this is how we handle it with her. When Teddy was eating more foods orally than he is now, I would make him a small plate every meal with just his food on it. I have zero problems with making separate meals for people, as long as those separate meals are easy and fast.

Brilliant Ways to Use A Visual Timer with Your Child

Visual timers are a GREAT tool to use with children, whether special needs or not. We’ve actually owned a Time Timer ™ since my oldest was a toddler and it’s one of my very favorite parenting tools.

Typically developing little kids, and developmentally delayed older kids, struggle with understanding time. It’s very non-concrete and kids just aren’t developmentally ready to tackle abstract things like time. And yet time is such a big part of our lives. The visual timer helps kids to SEE time, which helps them to learn how time works, and which also helps them (and you) navigate their day a little more smoothly.

Timer options

There are several options out there for visual timers. In my experience, a 60 minute timer works best in a wide variety of situations. I love the Time Timer ™. It’s rugged, it’s easy to put back together (yes, lol), it has a clear display, and it’s easy for kids to set themselves as they gain skill. There are other options for physical timers, as well. I advise staying away from oven timers and the like – they tend to have a very unpleasant ring.

I also have a few visual timer apps on my phone, one is called OK Timer and the other is just called Visual Timer (both android, I have no idea if they’re available for Apple). And we have a one-minute timer of the colored-liquid-in-clear-plastic variety.

Using the Timer

I’m not going to pretend to know the best way to parent your child. I can tell you that with my three kids, I’ve had two who needed the rule to be that when the timer went off, it was time to do whatever they were to do when the timer went off. I’ve had one who sincerely needed another five minutes after the timer went off. We just set the timer for  5 minutes less than we really wanted, then let him set it for another 5.

I’ve had two kids who just generally cooperated with the timer. And one kid who needed rewards to cooperate with the timer.

I’ve had two who really came to rely on the timer to measure progress through the day, keep track of time on tasks or until events, etc., and one who really didn’t care for the timer and only used it for “you can do this for x minutes” or “you have to do this for x minutes” occasions.

So, do what works for you and for your kid.

Brilliant Ways to Use A Visual Timer

Transitions

Moving from a preferred activity to a nonpreferred activity, such as stopping playing with toys and taking a bath, or turning off the TV (set the timer to coincide with the end of the show) and coming to eat dinner.

Ending an Activity, like turning off the iPad, turning off the TV, getting out of the bath.

Starting an Activity, like homework, a bath, getting dressed, taking medications.

How Long Until…

The timer comes in really handy for those times your kid knows something is going to happen in the near future, but they can’t quite hang on to the idea of exactly how far in the near future. Once it gets to be less than an hour, set the timer and refer your child back to the timer. They can actually watch the minutes passing.

How long until we get in the car? How long until my friend comes over? How long until dinner? How long until bedtime?

Independent Play

I’m working on a future post about teaching independent play to children, but a visual timer can really help with this. You start out by getting your child involved in an activity he or she enjoys and can do without help. Bring in the timer, set it for a short period (2-5 minutes). Explain that you need to step away quick but you’ll be right back. He or she needs to stay in the room and play, but you’ll be back before the timer goes off. Step away, wait, come back, and praise the child for playing by him or herself before rejoining the play. Repeat, slowly increasing the minutes on the timer.

Travel

We use the timer in the car to help manage the “are we there” and “how much longer” issues. Currently, I can set the timer for an hour, and then set it for additional time and that goes OK, but that was tricky for a while, and we just would wait to set the timer until we were about an hour out from making a stop. We tend to stop every hour and a half when everyone’s awake, and having the timer REALLY helps with the repetitive questions.

Waiting

Waiting is SO HARD when you don’t have a good sense of time. The timer helps with at least two waiting-related issues.

Learning to wait. When the child asks for help with a non-urgent task, let him or her know that you can’t help right then, but you can help in 2 minutes. Set the timer. (Eventually, you can work on waiting patiently, but don’t expect that to happen right off.)

Managing anxious feelings when waiting. Waiting for a favorite TV show. Waiting for a parent to get home. Waiting for a snack to cook. Waiting is just hard, but using the timer lets the child see the time passing and makes waiting a bit more manageable, because it doesn’t seem like it’s going to last for eternity.

Completing an Activity

Kids tend to rush through nonpreferred activities. For one of mine, it’s the bath. He hates the bath, so his baths tend to consist of squatting in the water, then bouncing back out and declaring himself clean. Ummmm….no. So we use the timer. You have to sit all the way down, and you have to stay in there for 5 minutes and then I’ll come in and help you wash. (Note: he hates it in the sense that he’d just rather be doing something else. He doesn’t hate it in the sense that it really genuinely bothers him. I wouldn’t force him to stay in for five minutes if it was an actual issue.)

A timer is good for tooth brushing, too. (I prefer the liquid minute timer for this.) We also use it for hair brushing, for daily chores (your bedroom will take at least ten minutes to clean. I don’t want to see you until this goes off), etc.

Calming

When we’re headed toward a sensory overload or a meltdown, we can grab the timer and the kid, and do some calming activities until the timer beeps. I don’t know about other kids, but MY kid with tends to think that he only needs to barely take one deep breath before he’s ready to go back to whatever he was doing. Using a timer helps in several ways – first, it actually gives him something to focus on that’s relaxing (we use the liquid minute timer and flip it 5 times), and second, it helps him know there is a definite end to the “time in.” He WILL get to go back to playing. Since he knows the break won’t be forever, he’s usually more cooperative with doing a few calming activities like rocking, deep breaths, massage, etc.

Taking Turns

Taking turns can be really hard. The timer helps. Not only does it keep the turns strictly fair, but it also helps the person whose turn it is NOT to see that their waiting will not be forever.

 

I hope this gives you some ideas on how to incorporate a visual timer into your daily life. My regular kids have really liked the visual timer throughout their day when they were younger. With Teddy, who has developmental delays and special needs, we use the timer almost constantly during the day. We’ve had times we’ve had several timers going, even. Once you start using a visual timer, you’ll start seeing all the ways it can help your child’s day go just a bit smoother.