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.

New Diagnoses and Grief

Grief is a normal, natural reaction to getting a new diagnosis. I recently wrote about my own reactions to a new, unexpected diagnosis over at Teddy’s blog.

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Recently, my kiddo’s picked up a fair number of new diagnoses. Three were not surprises, one was. Sort of…

And I’m full on going through the five stages of grief over this.

And it’s ok.

I think, too many times, special needs and/or medical needs parents feel like the process we go through when we get a new diagnosis is weird or unacceptable or weak. But it isn’t.

It’s grief.

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Read the rest of this article over at Teddy Bear’s Journey.

Somebody Asked…What are the benefits of a two piece diapering system?

At Wallypop, we primarily make – and champion – fitted diapers with covers. Somebody recently asked us about the benefits of a two piece diapering system over something like pockets or fitteds.

There are so many.

What is a two-piece diapering system?

Let’s start by defining a two piece system. A two piece diapering system consists of either a fitted diaper plus a cover, or a prefolded diaper plus a cover. The absorbent part and the waterproof part are completely separate.

Customization

Since the absorbent part and the waterproof part are completely separate, you can easily adapt your diapering system to fit your needs. Do you need super absorbency and breathability, and prefer natural fibers? Use an extra absorbent fitted diaper with a wool cover. Need something super trim? Pair a trim fitted with a thin PUL cover. Is your child a super wetter? Nothing beats the overnight pee-a-thon like a fitted plus fleece cover.

Fit

Two piece diapering systems typically are sized – just as Wallypop’s Perfect Size diapers. This allows a superior fit over one-size diapers, and reduces leaking issues.

Cost

Believe it or not, two piece diapering systems are actually usually LESS expensive than pocket diaper systems or all in one systems. First, covers can be worn several times before they need to be washed, so you don’t need to change both pieces every time. Second, they just simply cost less, generally speaking. Woot!

Reuse

As mentioned above, you need to own fewer things overall, because you don’t need to change the cover every time you change the diaper. Make your cloth diapering even greener!

Absorbency

A two piece system can easily be made more absorbent to suit your needs. Pockets and All in Ones can be hard to stuff with enough absorbency, but it’s easy to increase the absorbency of a fitted diapering system – either purchase more absorbent fitteds (we make extra absorbent fitteds especially for those heavy overnight pee-ers), or simply add doublers – the cover will still fit snugly over the diaper without gaping around the legs, as can happen with pockets and all in ones.

Drying Time

Because they are a two-piece system, fitteds with covers tend to dry faster than all in one diapers.

Natural Fibers

Fitted diapers are made with all natural fibers, and if you prefer to use 100% natural fibers, you can use wool covers.

Easier to Wash with Less Stink

Two piece diapering systems tend to be easier to wash and experience less stink as a result. All natural fiber fitteds don’t require any special treatment in the laundry, and most covers can simply be washed and set out to dry. (Wool covers DO require special treatment!)

There you have it! If you’ve never tried a two-piece diapering system, we’d encourage you to give it a try. Wallypop fitteds and covers are an affordable way to diaper your baby!

Simplify Your Life as a Special Needs or Medical Parent

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

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

So the first step to simplifying your life is…

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

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

Separate the Necessary from the Feels Necessary.

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

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

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

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

Eliminate, Streamline, and Delegate

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

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

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

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

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

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

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

Make your Necessary items Easier

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

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

Keep a To Do List

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

Say No

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

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

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

Take A Break

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

Get Organized

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

Essentials Only During Crisis

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

Take Advantage of Slow Times

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

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

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