How Do I Deal With All The Other Parents?

How do I deal with Typical parents?

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

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

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

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

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

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

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

 

This Feeling is OK

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

 

What is a Typical Parent?

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

 

What is the real problem?

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

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

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

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

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

 

What we’re feeling

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

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

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

This might be a difficult exercise.

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

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

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

 

So what do we do?

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

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

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

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

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

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

 

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

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Helping Families who have a Kid in the Hospital

This is a reprint of an article I wrote a while back for Teddy’s blog. Do you have a friend facing an unexpected (or planned) hospital stay with a child? Wondering what you can do to help them? Or are YOU facing a hospital stay with your child, and feeling too overwhelmed to come up with something to suggest when others ask how they can help you?

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

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

2. Gift Cards
– Places that deliver food to the hospital
– Hospital system food (many hospitals have in-room meal delivery for parents and these meals can usually be purchased FOR parents in the hospital cafeteria)
– Places not owned by hospital but within the hospital (coffee shop, book store)
– Gas Stations
– Hospital hair salon
– Other hospital services that are “extras” like that (UIHC has massage stations, for example)

3. Company. Just bring yourself.

4. Unexpected surprises. Of any sort.

5. Treats for the child.
– A fun hospital gown
– Books
– Craft or activity kits
– A new movie or game
– If appropriate, bringing your kids for a visit, with maybe a board game or group-play video game

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

7. Texts or email just to check in.

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

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

10. Offering to hang out with the child so the parent can run to the store, go for a walk, go outside, go somewhere and cry, whatever. Bring a game or activity to do with the child.

11. Help at Home
– Pet Care
– Promises to shovel snow if needed, or mow grass if needed. (in our case, Randy can obviously do these things himself when I’m in with Teddy, but he also has to work full time and be a single parent and he also wants to come visit us on the weekends and it’s just plain NICER for him to not have to worry about these things.)
– Meals for parent/siblings at home
– Light housekeeping
– Ferrying mail, clothes, etc. between home and hospital
– Helping with other kids (taking them to lessons or classes, taking to/picking up from school, taking on fun field trips, providing before/after school care, etc.)

12. Mini bottles of liquor. Which are of course forbidden in hospitals, and aren’t appropriate for everyone, but I’ve had days when an amaretto and coke would have been a nice way to finish out the evening. Obviously, you need to use good judgement here.

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

14 Tips for Exclusive Pumping

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

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

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

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

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

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

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

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

My pumping log.

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

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

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

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

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

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

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

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


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

 

Increasing Supply:

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

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

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

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

 

And a bonus tip:

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

11 Ways to Survive a Long Hospital Stay With Your Child

Long hospital stays are so challenging. The stress, the poor sleep, being cooped up, dealing with the medical things, and trying to help your child as much as you can. There’s no privacy. And most of us fall into habits that don’t help our mental well being – sitting around, eating junk, drinking too much coffee, stress eating, whatever your coping mechanisms are.

Here’s a list of eleven things I’ve found make a HUGE difference during those long stays.

  1. Drink. No, I don’t mean alcohol (though I sometimes think hospitals should have bars that only take tokens, and parents can earn the tokens through doing good deeds like not being grumpy with the residents). I mean keep yourself hydrated! Drink water, yes. But you also need to get yourself some fun drinks. Like flavored water? Stick some drink flavorings in your hospital suitcase. Like pop? Pack it, but don’t over-do it. Like Coffee? If you’re going to be there for a long time, bring your favorite coffee things – whether that’s your Keurig, your French press, or your favorite creamer. I’m not encouraging over-indulgence here. But I find that treating myself to my personal favorite – raspberry flavored tea – every now and again really does put a bit of a bounce back in my step.
  2. Healthy Food. Especially if you’re a stress eater! Your hospital cafeteria might not have great food, but I bet it has a salad bar and I bet they serve at least semi decent veggies. Ours has great veggies and a nice salad bar, and I make it a point to stock up whenever I can. I also have my husband bring me frozen single-serve veggie dishes when he visits on weekends. Not only is this keeping my body functioning better than it would on junk food, but it actually gives me a mental boost, as well. Not because I love salad so much, but because I feel good knowing I’m eating healthy things. And my body has come to associate Hospital with Vegetables. I actually eat more veggies when we’re inpatient than I do at home. Which is weird. But it’s good for me! And good for you, too.  Some hospitals even have arrangements with local farmers and food co-ops to make fresh veggies available to families. Take advantage if your hospital does this!
  3. Treats. Yes, to go along with all those vegetables you’re going to be eating… bring or get small portions of treats. I have a few of those single serve microwave brownie cups in my hospital suitcase, and I also pack hot chocolate mix. And I know where to get scotcharoos. And as long as I don’t get carried away, these sugary treats ALSO provide a mental boost, because there’s nothing like letting yourself have something that just plain tastes sinful at the end of a long, stressful, and either very boring or very unpleasantly exciting hospital day.
  4. Things Unique To Your Hospital. Most larger hospitals have SOMETHING available to families. A gym membership? Get Child Life to hang with your kid while you check it out. Massages? I used to get a massage during every surgery. They often joked that they couldn’t make much headway on my tension. But it still felt nice. Find out what your hospital has on offer, and take advantage.
  5. Exercise. Yes. Exercise. What can you do in a hospital? If you can leave the room, go for a walk. (If your child can join you, so much the better.) If you can’t, there are YouTube exercise videos, YouTube yoga videos, etc. You can do pushups, situps, squats, calf raises, tricep pushups, etc. in the room. (Oh no! What if someone walks in?!? It’ll be OK. If you’ve been there for a while already, I’m willing to bet that someone walking in on you doing a pushup isn’t the worst thing that’s happened, and you exercising is going to be FAR FROM the strangest thing the hospital folks have seen.) You could even jog in place, or figure out a small circuit in the room. I used to have a stretchy band in my hospital suitcase for some resistance exercises before it got lost. Look up Office Exercises for some other ideas. (or I have a Pinterest board with ideas!)
  6. Electronics. Yes, embrace the electronics. For you, for your child. Your kid’s likely sitting in bed most of the time. YAWN. It’s ok to put aside your ideals about electronics use and let them use a tablet for a while. Truly, this is how Teddy learned his letters and numbers. Yep. The iPod I let him use during hospital stays.
  7. Social Media. There’s nothing quite so isolating as being in the hospital with your child. Especially if you’re on isolation, lol, or in the ICU. Many parents live a distance away from their child’s hospital, making it hard for friends or family to visit, and even if you live in town, many people don’t or can’t have visitors. Use social media to stay in touch with the outside world. Even if it’s hard. I know, believe me, how hard it is to be sitting in the hospital with a gravely ill child and read on Facebook someone freaking out because their perfectly regular kid has a perfectly regular fever, or GI virus, or is getting a tooth. Stay off Facebook if you need to, but try to stay in touch via private messaging or text to your inner circle.
  8. Go Outside. If at all possible, go outside. Even in bad weather. Even if all you do is stand under an awning for five minutes. Go outside. Take a few deep breaths. Do some stretches, or that thing where you tighten and relax your muscle groups for a minute. It isn’t good for humans to be indoors all the time.
  9. Child Life. Get to know them. Get to know what they can do for you and your child. Use them. They can hook you up with toys, activities, art supplies, iPads usually, gaming systems, sometimes music therapy, sometimes therapy animals. Child Life is your friend.
  10. Spiritual Services. If you are religious, talking to the hospital chaplain, even if that person is a stranger, can be really helpful in re-setting your mental state. During one hospital stay, a long distance friend whose dad was a pastor in the are we were staying had her dad come and visit us for a while. I sat and chatted with him for an hour or so, and it was really very nice. Just…. soothing.
  11. Scream and Cry. Most hospitals will have a place you can do this. Embarrassed about it? Take a pillow and find a distant bathroom or meeting room. But there’s no reason to be embarrassed. Nurses will understand, and if you ask them for a safe place to go cry loudly and maybe yell nonsense for a minute, they’ll know where you can go. Sometimes you just need it, and you can’t usually do this in the room with your child.

All About…Cord Clips

Our Cord Clips have been one of our best sellers since we introduced them a few years ago. These simple little doo dads are surprisingly handy – and not just for special needs!

First, the highlights.

  • They’re made with fabric. Four layers of fabric, to be specific. This makes them so much more sturdy and longer lasting than clips made from ribbon.
  • They have two sets of snaps, making them far more versatile than clips with just one snap. There are so many different positions you can use these things in! More on that in a minute.
  • The clip is strong but easy to open. Just press up on the lever. The teeth are non-damaging.

Now, the uses:

With feeding tubes and oxygen tubing, to reduce pulling, to manage excess tubing, or to keep tubing positioned.

With ventilator or CPAP circuits.

With dialysis tubes.
OK, I ritually sacrificed all of our dialysis supplies when Teddy got his transplant, so I don’t have any pictures, but the clips can be used to keep the tubing positioned. If you are on dialysis and want a free cord clip in exchange for high quality pictures if you using it… let me know.

To hold 60 mL syringes in place, whether for gravity feeding or for venting.

To hold a feeding pump bag in place, with or without an insulated cover.

To hold charging cords in the car and keep that mess a bit more tidy!

How do you use YOUR cord clips? Share a picture on any social media account (well… Facebook, Instagram, Twitter, or Pinterest) and tag Wallypop (@wallypopia on Insta and Pinterest, @wallypop on Twitter) or share on your blog and pingback to this post. June 30, we’ll put all the tags and pings and whatnot in a hat and draw two to get a free cord clip! (US only unless you want to pay for Priority shipping)

Don’t own a Cord Clip yet? You can buy them here: http://lemondrops.wallypop.net/cordclip.html