To the Woman at the Pool

An open letter to the stranger who approached me in the locker room as I was restraining my 8-year-old, who outweighs me by 15 pounds:

I know how we must have looked. 

My daughter had been on edge all day. It’s why we took her to this public pool in the first place. We knew she had to get some physical energy out, and hoped it would be enough to shake out whatever was making her feel so uneasy. 

And it had sort of worked. She had been basically placated. Pretty much having fun. She got upset at one point because- you know what? I don’t even remember. Her triggers are often random. She ripped my sunglasses off of my head and snapped them in her hand. Maybe you saw that. I know the people next to us did. They probably wondered why I didn’t scream or grab her by the ear or even spank her. Why instead my reaction was “well, at least it was just cheap sunglasses.”

So when you saw us in the locker room, maybe it was the second time you saw me struggling. I don’t think you were there for the first part, when she was trying to explain how she wanted me to do her hair, go frustrated, and therefore started pushing me. I don’t think you were around as I wrapped my arms around hers from behind, interlocking my fingers, and telling her “you are being unsafe. I cannot let go until you are safe again.” I don’t think you were one of the first people who walked by. I saw many look, and skirt around us. Maybe you heard me repeating my line. “You are being unsafe. I cannot let go until you are safe again.” Maybe that’s how you knew?

But wherever you came from, and whoever you are, and however you knew. 

Thank you. 

Thank you for getting in front of us, making eye contact with me, and asking, “are you OK?”

And once I told you I was, thank you for getting down on my daughter’s level and looking her in the eyes. 

Thank you for speaking so calmly to her. Telling her “you have had a good day. I know you have. And you are going to be ok.” You didn’t chastise her. You didn’t judge her. You just told her she was going to be ok. 

Thank you for handling the people who walked by for me. The ones who asked if everything was alright. You told them “this child has some issues and occasionally has episodes. She is having one now. This is her caregiver, and she has it under control.” How did you know that? And how did you know that explaining that and even more importantly understanding it was exactly what I I needed?

Because of your actions, my daughter was better within a minute or two. Often, being restrained sends her into a panic attack. But this time, she laid with her head on my chest, cried for a minute, and pulled herself together. And I pulled myself together. Because a stranger was there to take care of both of us. 

You left so quickly that I didn’t get to thank you, or ask you why you knew what to do, or even get your name. So I’ll just put it out into the universe that you were in the right place at the right time. And you did exactly the right thing. And it made all the difference for my daughter and I. 

This is part of a series about living with someone with emotional special needs. If you’d like to help our family, or learn more about our story, you can check out our gofundme page. 

Body Clutter

I was lying on the floor, and I realized- I felt relaxed. It was a strange feeling. I hadn’t felt that way in close to a year. But there it was. Soft muscles. Clear mind. 
It reminded me of another moment of self-awareness I had recently. One that had to do with strength. I felt strong. That felt different. I knew I had felt strong before. But it had been so long it seemed new. 
Both of these moments came during hot yoga classes. They were my first real work-outs in months. And they were bringing me back to who I was before the chaos began. 
And yet. Another feeling followed. Guilt. 
I shouldn’t be spending all this time and money on feeling relaxed and strong when there are so many things to do at home. 
I did my best to say hello to that feeling, and then ask it to go away. I know it is important to take care of myself. I know I need to be healthy- physically and emotionally- to take care of my family. But it takes mental work. Especially when our house is (still) such a mess and our bank account is (still) so low. 
I will keep fighting my brain on this. Because I know that self-care is as important as any other element in taking care of my family. And because I know that a healthy Mama is a more effective Mama. 
There are other benefits, of course. I look back over pictures from the past 8 years, and the difference is clear. I don’t need to see the date on the pic to know whether I was healthy or unhealthy when it was taken. Sure, there’s a weight difference. (Something that was not part of my life until I hit about 37 and then BAM.) But I can also see the difference in my posture and the look in my eyes. 
The past year has been the most difficult of my life. I have gone from eating well and working out several times a week and running long distances, to eating whatever is fast and convenient and hurting when I get out of bed because of the tension and stress. As we heal and recover and declutter our lives, it is time for me to declutter my body. 

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?

Confessions of a High Achiever 

I have a confession to make. For those who know me personally, it’s one that will shock you. And I’m probably breaking some kind of Alpha Mom Code by saying it. But I cannot pretend any longer. 

I hate being busy. 

We all talk about how busy we are. And honestly, I am the queen of busy. Look at me! I can be a freelance performing arts teacher and blogger while advocating for my child’s special needs, all while keeping up a social life! Wheeeeeee!!!!

When I was in the first grade, I remember telling my teacher (quite proudly!) that I had an activity after school every single day. 

In high school I won the top service award for my senior class. This was just code for This Girl Is Crazy Busy. 

My freshman year of college I was a cheerleader for women’s basketball. I would cheer for the women, run into the bathroom to change, and play in the pep band for the men. This only stopped because the schedules changed and they stopped being double headers. 

It’s been part of my personality my whole life. So it makes sense that by February of this year I was teaching 20 classes a week during the school day, 15 piano lessons a week in the afternoons, and ending my week teaching 2-hour classes at homeless shelters. All while getting my daughter settled in a new school. 

It was a decent amount of money. And everyone wanted me to teach for them. 

And I was miserable. 

If I wasn’t literally standing in front of students teaching, I could hardly have a conversation without crying. I was grumpy and snapped at my family. We didn’t have clean laundry or groceries and we were constantly eating at restaurants because I had no energy to deal. Most of the house looked like this. 


Now, a lot of this was out of necessity. A series of events led to me being the primary breadwinner of the family. My husband was working like crazy, but new businesses don’t provide immediately. 

But a lot of it was beyond that. Being busy had become my lifestyle, and my habit, and quite frankly, a bit of a bragging right. People want me! Hooray! Look at how many people want me!

But I knew something had to change. We were told over and over by therapists that we needed absolute consistency for our daughter to manage her anxiety. And I couldn’t do it. For a while, I was hard on myself. I blamed my own mental illness on my inability to provide consistency. I just couldn’t give enough. I couldn’t do enough. I couldn’t BE enough. 

Then, a friend offered to start a gofundme campaign for our family. The money we raised allowed me to say no to working like a crazy person. (Still working! Just not like a crazy person.) And the answer to our chaos seemed clear. 

In order to declutter our lives, I would need to declutter my schedule. 

Right now, I am sitting at the kitchen table. There are healthy snacks here, and I am sharing them with my husband, who has space to work. We just had a calm discussion about transportation for the afternoon. (Complicated, when we only have one car, I teach piano lessons in students’ homes, and our daughter has therapy every day until 6…) I know what is happening for the week. I know what we’re eating  and when I’ll do laundry and how much money we have and what bills are coming up. And this is very different indeed. 

Over the past month, I have decluttered my schedule. Our lives are still very much works in progress. But for the next few weeks I’ll share what we’ve done. Maybe we can all declutter together!

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.

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