Tuesday Tools: Flylady

I don’t feel well today. My allergies are terrible and I have cramps. I want to curl up and watch all remaining episodes of Unbreakable Kimmie Schmidt. 

But I won’t. In fact, it’s been a decently productive day. And it’s all thanks to today’s Tuesday Tool. 

FlyLady.net

I found Fly Lady about a decade ago when a friend and I were looking for lists of everyday cleaning tasks. We had decided it was time for us to learn how to take care of a house like grown-ups. We’re both Moms now, and both still very much works in progress. But anything I’ve learned, I’ve learned from Fly Lady. 

One reason her system works for me is because she acknowledges that for some of us, difficulty with housekeeping is related to mental health. I need to look at things in baby steps. I need a ton of do-overs a day. 

Last week my focus was on decluttering my schedule. This week, I’m sharing how I am decluttering my home/ physical space. Sloooooooowly. And it all comes down to Fly Lady. 

What are some tips you have for decluttering your space?

Tuesday Tools

Ok two things. First, it’s Wednesday. I had this great idea for a weekly feature called Tuesday Tools. I would let readers know about some of the tools I’ve found while taking our family from Total Chaos to…. well… usually less chaos. It’s a work in progress. 

But then there was a link I wanted to use that wasn’t ready. And do you know what Patty said to me? (Patty Perfectionist. She lives in my brain and makes things difficult.) She said “now you have to wait until next Tuesday.”

Really, Patty?

Well guess what. Wednesdays are Anti-Procrastion Days with Fly Lady. (More about her on another Tuesday. Or Wednesday. Whatever.) So the fact that the very first Tuesday Tools was posted on Wednesday is fine and STILL FITS THE THEME BECAUSE IT IS ANTI-PROCRASTINATION DAY AND I AM A WORK IN PROGRESS SO SHUT IT, PATTY. 

Second. I am not an expert at this chaos-busting. But I am a super open person who is currently going through it. So if you are looking here for expert advice- I recommend you look to Fly Lady instead. But if you want someone who will talk about what this feels like  going through it right now and who will share some of what I’ve learned… I’m you’re girl. 

On to the tools. 

This week I’m writing about decluttering my schedule, and there are two apps that honestly rule my life. I am so super picky about planners I can’t even tell you. And these two do everything I need. 

1. Cozi

I’ve been using this app since the profile picture we use was current. 


My daughter just turned 8, so you do the math. 

Cozi is a family app that has helps keep everyone on the same page. Over the past several years it has stopped several arguments before they could start. 

Person 1: I have a meeting tonight at 6.

Person 2: YOU DO???

Person 1: I put it on Cozi. 

Person 2: [Silence]

{Scene}

With the Cozi app, we can plan who will be where and when. We can have shared grocery lists and to-dos. We can plan meals with the amazing meal-planning functioning. (Seriously, you guys. You just plug in the link to a recipe and it breaks down the steps and the ingredients and then you can add it to your menu and your grocery list and HOW DOES IT DO THAT? Magic.) 

It’s all incredibly user friendly, and it’s free. I highly recommend it. Here are a few pics of the app at work. 


Cozi has a partnership with Fly Lady, which is how I first learned about it. 

Ok that’s the third time I’ve mentioned Fly Lady. There will be multiple blogs dedicated to how Fly Lady has influenced my life when it comes to battling chaos. This is not one of them. But you are probably curious now. So you can check her out here

I don’t have any affiliation with Cozi. I wasn’t paid to write a review or anything. I just really love this app. 

2. Stridepost

I just discovered this app a few months ago.  It turns out, that’s because it just came out a few months ago. It has helped my daughter in so many ways. While I don’t have an affiliation with them, either, I did write a guest blog for them today, simply because their product means that much to me. It has honestly changed the way my family functions as we learn to deal with my daughter’s anxiety. I’ll post some pics below. But to get a deeper idea of the impact it has made, please read my post on their site: 

Living Room Forts, And A Million Other Tiny Decisions

I don’t want to overstate it. But if you have a child, this app will help you. Here’s what it looks like in action:


And those are our tools for today. Wednesday. Not Tuesday. But Wednesday Tools has no ring to it. 

What are some tools you have found to help manage chaos?

Project April, Part 1

I’ve been whining a lot.

Ok maybe not. But it feels that way. Since we launched our gofundme campaign a little over a month ago, I’ve spent a lot of time explaining why we need help.

And it has felt like whining.

The truth is that in the past year or so, we have had our world turned upside-down.  But now, it is beginning to settle a bit. Granted, it has settled squarely in the upside-down position. But our lives are becoming more predictable, and we are starting to understand our “new normal.”

This is where the real work begins. Our lifestyle is not working for us. Not legistically, not emotionally, not financially. So we have started to make we changes, and we invite you to watch as we implement them. Today’s video is “before.” This is what I was trying to make work. And we just kept ending up with a mess in our home and a withdrawn bank account. As you’ll see, the lifestyle itself would probably work for most families. But. That’s why they call them special needs. 

Here’s Project April, Episode 1.

This is part of a series of blogs chronicling what it’s like living with a child with Mood Dysregulation Disorder. A gofundme campaign was established to help us cover some expenses incurred over the past year. If you are interested in learning more about our story, please follow our Facebook page. 

It’s why they’re called “Special Needs”

This is part four of a series about raising a child with mental illness. For more about our story, you can go to our Facebook page.

I’m writing this from our living room floor. My daughter’s head is in my lap. We started trying to wake her over two hours ago. School is 45 minutes away, and started 30 minutes ago. She hasn’t been there since Friday. It is now Wednesday.

I have no idea why this kid is so tired. She goes to bed early and has even had a few mid- day naps.
Maybe it’s the moon. Maybe it’s the time change. Maybe it’s the fact that even though she is not quite 8, she is starting the early stages of puberty.

Whatever the reason, I cannot wake her. And if you have a neurotypical child, that is probably hard for you to understand. You probably want to help by giving me all kinds of advice.

“So then wake her up!”

“She needs to go to bed earlier!”

“Have you tried melatonin?”

“Have you tried natural alarm clocks? How about a salt lamp?”

“Splash some cold water on her!”

“Tired or not, going to school is not a choice!”
Look. When you put your stuff on the internet like my family has decided to do, you get unsolicited advice. We knew this going in. We decided that since our story might help others, we would put it out there anyway, and just deal with the advice. And I know people mean well. I know they want to help. (For the most part. I do believe there are people out there who want to point out how they live their lives because if only we did what they did, we wouldn’t have these problems. I understand the safety and security they must find in that. But we’ll put those people aside for now.)

To the people who are just bursting with the desire to give advice. To help. Please listen.

You are not helping.

You are, in fact, making it worse.

As a mother to a child with special needs, I already spend my days wracked with guilt and worry and feelings of inadequacy. When you offer advice, you say “here is a thing that might work for you!”

I hear “here is another thing that you are not doing properly or do not have the time/ money/ energy/ emotional resources to do.”

You say “I could fix this.”

And I hear “because you are failing.”

And of course this is not what you mean. Of course this is my own stuff. I know that. But this unsolicited advice gives me one more demon to fight every day.

There are some exceptions to this, naturally. We have lots of experts (teachers, doctors, therapists) in our lives who know our situation well and give us advice all the time. We have friends who have been in our home and who see our lives first hand. They sometimes offer suggestions. Family advice is always welcome, even when misguided or just flat wrong, because family. I’ve also gotten messages from people I know who are doctors and nurses and mental health professionals. And from other parents who have children with similar struggles. All of these people have some level of knowledge and understanding. And even though their advice might still knock me down for a bit because that’s my own stuff, it is still welcome.

But for the others. The people who don’t understand what we’re going through. Who don’t understand how it has gotten so hard that we have asked for help while we make long-term plans and changes. Who don’t get why we need a gofundme campaign right now. Who don’t get why we can’t keep our home clean. And who feel the need to suggest that we need a different kind of help than what we have asked for. I get it. But please stop.

And I say this not just for my family, but on behalf of all of the people who have reached out to us privately to tell us they are going through the same thing. If you have someone in your life who is raising a child with special needs, there are things you can do to help. And there are things that are less helpful  

Let’s take a look.

Helpful

I brought you this meal!

Less helpful

Have you considered eating in this very complicated way that takes hours and hours of planning and prepping every week?

Helpful

It’s a beautiful day! Let’s go for a walk.

Less helpful

You need to take better care of yourself.

Helpful

I’m coming over to clean your kitchen.

Less helpful

Let’s have a play date! Your place?

This is in no way meant to suggest that all families with children who have special needs are looking for help. I am hopeful that as we learn more about our daughter’s condition and adjust our lives to what she needs, we won’t need this kind of help either. But in the meantime, please trust that we know what we need.

A Day With The Wolf

This is the third installment in a series about raising a child with anxiety and depression. For more on our story, follow us on Facebook. If you are so led, you can also check out our gofundme campaign.

This is an actual, real-life day. As reported in Facebook statuses. 

8:00 AM Lily wakes up. We all slept on the fold-out bed in the living room last night because we were having a Star Wars movie night. She likes to keep people physically close to her. She woke up happily petting her dog. I have her the letter that our laundry angel left last night. She read the first half, but had me read the second half. She immediately grabbed a card, some markers, and some stickers. She wrote the salutation and the closing, and dictated the rest to me. It reminded me how smart she is, as the form of her letter was so appropriate. We told her people are signing up to help us, and that we were going to try to have it be less stressful at home in the future. 

8:15 AM While folding up the bed, Ryan’s hand slipped and he knocked over a glass of water. The glass broke. Lily immediately began screaming and thrashing on the bed. We couldn’t even make out what she was saying (this is very common) but she was devastated that the glass had been broken. Ryan and I both sprang into “ready” mode- looking for things she might throw, waiting to see if we would need to restrain her. This one passed easily though. She settled down, and her nose started to bleed. (Another very common occurrence. She works herself into nose bleeds a few times a week.) 

8:35 AM Lily asks if she can take a bath. Her body is far more advanced than her emotions, so hygiene is a tough one for her. We took her to Bath and Body works yesterday so bathing would be special. This is her second bath in 15 hours. 😉 Her nose is still bleeding a bit, but this is the only indication that she had an episode. 

10:05 AM Lily set her clothes out for church last night, took a bath this morning, then got herself dressed. However. It is not time to leave yet. (I just got out of the shower.) Therefore, she is “not going.” The “I’m not going” dance happened any time she knows we are going somewhere ever. She’ll go of course. But only after 20 minutes of I’m Not Going. 

10:10 AM Lily follows me into the bathroom and steps on the scale. 

Me: Looks just about right!

Lily: I’m scared. I don’t wanna be fat. 

Me: You’re not fat. You are growing though. 

Lily: I’m getting heavier. 

Me: Well that’s because you’re growing. But if you want, we can make sure we’re moving a lot and eating healthy foods. 

Her meds make her STARVING. All the time. Fortunately she is good about eating a variety of healthy foods. (She had a cucumber in her hand during this conversation.) But the combination of her meds and early puberty have led to significant weight gain. The doctors know about it. It’s not a problem. But it makes her sad. And having parents who weigh 250 COMBINED does not help matters. 
10:15 AM Lily asks if it’s time to go. It is not. She tells me again that she is not going, and starts banging her head on the wall. She then runs into her bedroom and slams the door over and over. Ryan tries to stop her and she lunges at him. She goes into her room screaming, and comes out a minute later as if nothing has happened. 

10:25 Lily settles down to play Minecraft with Ryan. I find out there is another church service at 5:00, so we all decide to go then. Another angel arrives to help with dishes. She also has breakfast. 

2:30 PM Ryan had a meeting and I had a lesson, so Lily rode with Ryan in the car. She was well-behaved and came home happy. She’s now calmly watching YouTube videos about Minecraft while waiting for someone to be available to play with her in about an hour. She’s hanging in there just fine, but I am waiting for the other shoe to drop. 

2:55 PM Since an angel came to help with the kitchen, we have a clean place. One clean place. I’m having some soup, and Lily is playing with her wolves. This is pretty common- she will hang out in the cleanest place. (Don’t we all?) It reminds me how important this is. Her mood right now is awesome. 


4:50 PM Lily had been playing Minecraft for about an hour with another of our angel friends online. We gave her a 15- minute warning that we were leaving for church. When it was time to go she happily said good-bye, put her shoes on, and skipped to the car. She does really well when she knows exactly what to expect. Off to church! 

5:15 PM Lily wore a special cowboy hat to church. Some of the jewels broke off. She ran out of the building screaming. We can’t chase her too closely, but Ryan and I both went outside to make sure she was safe. She screamed at us and stamped her feet that she was going home. After two or three minutes, she came back inside. Within another minute she was dancing with a friend. 

6:00 PM I connected with another Mom of a Special Needs Child. These connections are important. 

6:30 PM Lily was having a great time at church and really did not want to leave. She started whining that she was bored (we were literally STILL THERE) and whined on and off until we got home. She had a brief screaming session once she realized she really wasn’t playing Minecraft anymore today. 

7:00 PM Lily asked to take another bath. This kid will really not stink tomorrow. Ryan and I met while she was in the tub. A few schedule conflicts to work out, which is not easy since we both need to work as much as possible, and there are only a few people with the skills to babysit Lily. 

7:30 PM bathed, medicated, and in her pajamas, she cuddled up with Daddy for a bedtime story. She then asked if she could sleep on the couch. It’s such a balance, knowing that she should be in her own space, but also knowing that weekends can be tough for her and she wants to be near us. We decided not to fight this battle, so we let her curl up with a blanket on the couch while I work on lesson plans next to her. 

8:20 PM Snoring 

One of the skills Lily learned at the hospital was how to go to sleep. She literally did not know how to settle down her brain and body before. Now, (with the help of her meds which make her a bit sleepy) she can cuddle up and be snoring within a few minutes. She likes to sleep to relaxing classical music, which makes Music Teacher Mommy’s heart happy. 

#ADayWithTheWolf Wrap-Up

We had 6 mini explosions today. One caused a nose bleed, one had her banging her head on the wall, one sent her running out of the church building into the parking lot. 

In summary, this was a very easy day. 

Nothing got broken (except the glass, but that was Ryan’s fault….) and no one was injured. 

We made it to all of the activities we were supposed to attend. 

We didn’t wonder if we would have to call 911.

We had a very easy bedtime.

And most of all, we spent the day as a family, enjoying each other’ company. 

Today was a good day.

But wait. There’s more. 

Lily and I made this video at 2 AM. 

She did not to school the next morning. 


Argues With Wolves

This page has been quiet a long time.

We’ve been dealing with a wolf. And we kept that wolf hidden for a while. But the wolf got too big, too noisy, too strong to deal with on our own.

So slowly, quietly,  meekly at first, I asked for help.

The help I have received has given me the strength to keep fighting the wolf. There is still fighting to be done. But I know we’ll come through.

This week (or longer, if there’s more to say) I’m ready to share our journey here. 

  
I spend most of my days so exhausted it is literally difficult to breathe.

It’s getting hard to turn my head. The tension is so bad I’m just in pain all the time.

Last year at this time I was training for a half-marathon and eating with intention to fuel my body. But I haven’t been able to work out for months. I’ve lost weight, I’ve lost strength, I’ve lost energy.

Even during the rare moments when I can forget about the illness, it’s there in the back of my mind. Shoulders weighed down. Tears forming.

I’m not sick.

But my child is.

My daughter’s disease has always been lurking. But over the past year it has gone from something that is probably there, to something that has taken over our lives. My husband and I wake up in the morning without knowing what the day will bring. Will we be able to get to work? Will she be able to attend school? Will this be one of the days when she ends up in the hospital again?

I’ve heard all about the toll being a caretaker to someone ill can have on a person. (Does it count as being a “caretaker” when it’s your own child? Isn’t that just being Mommy?) But I have also watched communities gather around families in crisis. I’ve seen fundraisers and meal trains organized. In fact, I’ve organized them. So I always assumed that if, God forbid, the time ever came, we could reach out to our community.

But we haven’t.

And the community isn’t to blame. We haven’t reached out. We haven’t told many people that we can’t even keep up with our rent and other bills because of all of the missed work. That my husband actually lost his job because he “just didn’t seem to be available lately.” That I worry every day the same thing will happen to me. That we both lie awake at night wondering what to do. That we do our best to put on a heave face but we can’t hide it from our daughter all the time. That she talks about it at school. That she’s worried that we’re worried.

We haven’t shared how frustrating it is to have her doctors tell us that the cleaner the house is, the healthier she’ll be. But that we don’t have the time or energy to clean or do laundry on a regular basis because of how all-encompassing her disease is. And that the mess sets in as guilt. Which leads to depression.

We haven’t shared the depth of our struggles for the most ridiculous reason.

My daughter’s illness is not a physical one, but a mental one.

And what difference should that make? I mean honestly. And yet.

There have been times- several times- when we’ve publicly shared what is happening with her. And then it is privately suggested to us that we don’t share too much. Maybe people shouldn’t know that about her.

When she returned to school after a long hospitalization, her teachers had told the other students that she just wasn’t feeling well. They suggested we leave it at that.

But she doesn’t want to leave it at that.

My seven-year-old, who can explain the function of the cerebral cortex and its effect on her behavior, who describes her disease as an angry wolf, and who is quite literally the most loving, empathetic person I have ever met, does not feel any shame. She doesn’t know what stigma is. When asked, she tells people, “I get really mad and sad. And sometimes I need help with that.”

So today, I am learning from my daughter.

I am the mother of a kid who sometimes gets sad and mad.

And sometimes I need help with that.

There are days- like today- when it feels like too much. But parents don’t get to give up.

Nevertheless, she persisted — Amiright?

So I stop. And I breathe. And I make lists. What is a “Have to do?” What is a “want to do?”

And I think about the victories we’ve seen. Like her newfound love of learning at her school.

And I let myself enjoy my work.

And if it’s still too much, I ask for help. And that’s okay.

Note: A version of this article appeared at Pregame Magazine on March 1. Since its original posting, many members of our community have reached out with offers to help. You can continue to follow our story here, and on our Facebook page: Lily And Her Angry Wolf.

A gofundme campaign has also  been established for our family. We are so grateful for all of your support.

The Typical Child

Sometimes I wonder what it might be like to have a “typical” child. A child who lines up with the norms and follows the rules. I wonder how it would feel to post smug memes about how misbehaved children are always the parents’ fault. Always. And to read parenting books and have them work and then pat myself on the back because look at what a great job I’m doing! I wonder what it would feel like to visit school for a PTA event and not feel like “that mom.” The one who can’t control her kid. I’ve fantasized about going places like the grocery store or Target or the zoo or the amusement park or the pool or a gas station without feeling like it could all fall apart any second. I’ve heard there are parents who send their children to school and don’t jump every time the phone rings because what is it this time? Has she thrown something? Hit someone? Or does she just need her Mommy because her separation anxiety is so very real. Why wouldn’t it be when her first Mommy really did leave? And I think about the Moms who have never seen that look in their child’s eyes. The one of sheer terror as she cries “I can’t breathe” in the middle of a panic attack, and nothing I say or do can convince her that she is ok.

I wonder what it must feel like to have a typical child and see mine in the throes of a meltdown. To think “if only those parents knew how to say no,” and be certain I had done everything right. To never have to wonder if maybe she ingested food dye without us knowing. Or if she is experiencing something really emotionally significant. Or if this is residual effects of the drugs she had to fight out of her system when she first entered the world. Or if maybe she’s just 7 and having a bad day. There must be great comfort in applying blanket rules and policies to all children without stopping to consider whether that’s fair or effective or even safe.

I have often wondered what it would be like to have a child who is typical. One who doesn’t experience emotions with such self-awareness and express them with such eloquence that she makes me question things I had never considered. A little girl who isn’t so deeply empathetic. A child who hasn’t drawn people to her with a mysterious charisma her entire life. A child who isn’t so passionate about life, and already in love with the theatre. A child who doesn’t have  a way of knowing when people- and animals- need help, often even knowing exactly how to help. I wonder how it would be to raise someone who doesn’t make friends everywhere she goes. Someone who doesn’t make an impression at every restaurant, every store, every party- not because of her behavioral struggles, but because of her heart.

I have often wondered what it must be like to have a “typical” child. And how much love and magic I would have missed.

Previous Older Entries

%d bloggers like this: