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.

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. 


Papa Wolf

This is the second installment in a series about raising a child with anxiet 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 Ryan’s story, told in his own words.

  

Long Saga (I mean LONG)….

As many of you know, Mindy, Lily and I have had a tough year, and a REALLY tough past few months. The other day, Mindy was talking and sharing with our friend Sylvia. Sylvia has been working with her husband to create a non-profit company to market and help with various causes, and she asked if she could set up a page for Lily to bring attention to the issues families face dealing with mental health illnesses. I thought that was a great idea. She also wanted to do a “gofundme” campaign for us. This I was pretty adamantly against. For a number of reasons. First and foremost, although we had a bad couple of months, everyone has struggles. I know so many people with “real” problems. Serious physical health issues; sudden loss of loved ones; tragic accidents etc. etc. THESE are the people than need a campaign…not us. Secondly, we are not completely blameless in our situation. There have been times we have spent money we should have saved, there have been times we have opted for chilling out on the couch or going to the beach and letting the housework get behind, we weren’t exactly “responsible” and “on top of” things…even before we adopted Lily.

People lose their jobs everyday. People have to deal with difficult situations every day. What makes us so special to ask for help when so many others have it just as bad or worse? THEN, a friend reminded me that “just because other people have problems, doesn’t mean that yours aren’t real” and “even if you haven’t lived your life perfectly, it doesn’t mean that the situation with Lily the past year hasn’t put a tremendous overwhelming stress on your life”. SO….I reluctantly said “OK. You can post the campaign”. I awoke this morning and saw it, and was overwhelmed by the support that has been given in just a few short hours. I also felt a peace and relief that has been eluding me for months. I felt like things just might turn out OK. All of this aside, I want to share exactly what has happened with Lily and our lives of late. It is a long story, but I think that if people are giving so freely, they should know why we are where we are. So here goes:

Living with Lily, a child Emotional Dysregulation Disorder:

Anybody who knows Lily know she is a pretty awesome kid. She is funny. She is smart. She is goofy, and she is just about the most empathetic girl I have ever met. She understands in depth things that most 7 year olds don’t. She is a passionate kid, and it is wonderful….except when it is not. You see facebook posts of her big smile, and hear stories of her big adventures, but what many don’t see is her unbelievable behavior outburst. This is a girl that at 7 years old, is 4’-10” tall, and 113 lbs, and when she melts down, that big body has a tantrum that is worse than anything you have seen from your 2 year old. She screams, she hits, she throws things, she runs. To put it bluntly…the girl will completely lose her shit. The worse part is, although there are certain triggers we can prepare and be ready for, we honestly never know when it is going to happen, and the obsessions change daily. We live on edge 95% of the time. If she goes to a friends, we have to be within a few minutes away just-in-case. “Drop off” Birthday parties are not a thing in our world. There is no having a teenager babysit her for $10 an hour so we can go get stuff done. Other than a small handful of situations, either Mindy or I have had to make sure we are available to come to the rescue in a moments notice. When we are at home, we never know when something will set the meltdown in motion and we have another expensive phone smashed, or another plate of food thrown against the wall, or we will have to physically restrain her by holding her arms and legs while she screams and bites down on my arm until she hyperventilates and breaks down in tears and says she wants to just “kill herself for being such a bad kid”. Even in “calm” times (which is usually), the stress is always there. When will it happen next. What happens when she is older and she really hurts herself or somebody else? 

Also always there, is the guilt and denial. “If only I could get a more regimented routine set up she would be fixed”…”If only we could get the house in order she would calm down”…”Maybe we need a different reward system”, or “stricter consequences for when she acts out”…that might be the problem. 

Lily goes to a special school that is specifically designed for kids with emotional issues. The teachers and therapists there are specifically trained to work with these type of issues. She has been there for a couple of months, and they are still working to figure out what works for her. 

Lily, Mindy and I have been part of ICAAPS, which is an intensive family therapy program for 6 months. This program is specifically designed to help families dealing with emotional disorders. Our therapist said that Lily’s is one of the top 5 severe cases she has seen in her years of doing this. Even with every professional saying we are doing everything right, I still feel like, if I could just do a better job of “adulting”, my girl would be her regular/cheerful self, and the meltdowns would stop. 

Mental diseases are often looked at this way, and it is tough to accept the fact that this is a REAL thing. Just like diabetes, or cancer, or a broken bone…her Emotional Dysregulation IS a disease. The part of the brain that regulates mood was destroyed in-utero by the cocaine that her birth mother used daily. Not only does she indeed have this, but she has it bad. It is exhausting to deal with under the best circumstances. We have not had the best circumstances.

The start of the mess:

We noticed the excessive breakdowns early, but when she was 2 or 3, we thought it was just her big personality that made Lily’s tantrums seem big. As she started in school, slowly the problem was being exposed. Lily has always had more struggles in school than the typical kid. As the work got more structured, her emotional reactions to stress got worse, and it culminated into the meltdown of all meltdowns in 1st grade. She completely lost her mind, and ultimately destroyed her classroom. We were called in and I was in complete shock. Think of all the stuff in a 1st grade classroom, and then picture ALL of it thrown about. Every crayon, every paper, every poster. Chairs thrown, desks overturned. You literally could not see an inch of bare floor in a room that holds 20 kids. This was the moment that we realized it was a deeper issue than temper tantrums. This was the moment where we discovered she needed intense help. 

As the year went on, she was removed from the classroom. Lily is a VERY social girl, and thrives at being a good friend. When she was removed from the social element of school, she started refusing to go, and eventually she was reduced to a 9-12 school day, if she went at all. 

Meanwhile, I was working as a Senior Designer for a local firm. My job was set up so I had charge of my schedule and my clients. Since I had much more schedule flexibility than Mindy, I was the one who ultimately took Lily to school and picked her up at noon (or when they called earlier because she couldn’t make it through the morning). Also, since Mindy was only an inch taller than Lily, I was the only one that could manage her at home if she had a meltdown. Mindy was simply overpowered. So I found myself squeezing what work I could get done between 9-12, and often couldn’t go back to catch up in the evenings. I was either exhausted, or needed to stay to help with the meltdowns (this was before intervention from professionals). 

I missed more and more office time, and although I was able to keep my clients well taken care of, I didn’t stay on top of the office management stuff I was supposed to do. I ended up being asked to leave because “The arrangement wasn’t working anymore”. I understood, and wasn’t surprised, but it was a blow nonetheless. 

I was actually very optimistic. I had a handful of clients willing to stay with me, so I started my own little firm to help on the income front, and was able to truly make my own schedule. It was going pretty well. We made it through the summer to the start of 2nd grade, and there were some new IEP plans to help Lily succeed. We were enrolled in ICAAPS (the therapy program mentioned earlier) and we were ready to face the new year. Then…October happened. It was the beginning of the series of events that ultimately is getting Lily to the right type of help, but also the events that landed us in a deep dark hole and in need of this campaign. Everything was building slowly, but the crash came quickly, and we just couldn’t react and correct our course quickly enough. Taking a cue from Lily, who has no shame in telling her story, I am going to lay out exactly what has happened since October. 

Monday, October 24

Until now, there are probably only 8 people who know this, but on Monday 24th, I was arrested. Like…real-deal arrested. It was a crazy series events stemming from a traffic ticket that I thought was taken care of in 2010, but it wasn’t. Once I found out the issue, I was working on getting it resolved, but in the chaos of our personal stuff…I missed a court date. I didn’t realize it until it was too late. I knew that I had to get it all taken care of before April (I have to renew my driver’s license in April), but apparently it was more urgent than that. Apparently missing court for a traffic violation in Connecticut is a VERY big deal. The police showed up at our house with a warrant at 10pm, handcuffed me, and took me to the station. Bail was set at $1500 which we didn’t have. It was already 11pm, and Mindy just got Lily to sleep, so I decided just to stay the night in jail and go to court the next morning. Greenwich jail is very nice, and the cops and I were getting along great. Everything was resolved the next day, but it was still a pretty crazy experience getting handcuffed and taken away…and Lily saw the whole thing. The cops were fantastic, and waited to put the handcuffs on until we were outside…but still.

Tuesday, October 25

I went to court after spending the day in the holding cell, and showed the judge my paid receipt for the ticket, and the charges were dropped (although I have to do a few hours of volunteer work for the “failure to appear” charge). Mindy and Lily picked me up and we laughed about how daddy is a criminal (sense of humor is a key defense mechanism in the Smith house)

Friday, October 28 (4 days later)

Mindy and I were driving to Target when a car pulled directly in front of us…. BAM! Our old little car, that was going to be paid off in 2 months, was totalled. Mindy hurt her arm in the accident and had to go to the hospital. Thankfully it was just badly bruised from the airbag. Lily was at school and we were about 2 hours late from her normal pick up time. When we got there in an uber, she was pretty scared and upset about the accident. 

It was a bad week for her emotionally between having her dad go in the police car, and both parents getting in a car accident. Not the best circumstances for a girl that can’t handle stress well. AND…now we needed a new car, which again, we could not afford.

Monday, October 31

HALLOWEEN! 

We made it through the weekend, and had some great family time and Lily was feeling better about the stress from earlier. She had “let go and moved on”. It was halloween!!! Other than Christmas, Lily’s favorite holiday is halloween. She starts talking about her costume in June. She was SO excited to go to school, because it was the day of the halloween parade. She got to dress up with all of her classmates and she was ecstatic. 

Lily was still on her shortened school day, but her IEP team said if she had a good morning, we could bring her back in the afternoon for the parade with her classmates. Only she DIDN’T have a great morning. She had a lot of stress the week prior, and a lot of excitement about the upcoming parade, and something upset her in the AM and she ran out of the building. The school said she broke the rules, so she couldn’t come do the parade with her classmates… 

(don’t get me started on this…a girl with extreme anxiety who had some terrible events happen, and some overwhelming excitement on the horizon wasn’t perfect the morning of halloween??? So you give her, what in her mind, is a punishment worse than death? Really?) 

ANYWAY…Lily was CRUSHED. It was beyond any disappointment she has ever experienced. She had to miss the halloween parade she has been waiting for since JUNE! 

She actually recovered, and went trick-or-treating with her friends that evening. It was a hard day for all of us, so she wanted to go stay with the one babysitter that we feel 100% comfortable with. We also needed a break from all of the emotion so we said “ok….off to Miss Debbie’s.”

Tuesday, Nov 1

We picked Lily up from Miss Debbie’s in the morning and drove her to school. She was pretty happy. We pulled in, and the memories of the prior day came flushing back. She REFUSED to get out of the car. Some staff came out to try and help. She was hitting and kicking both me and Mindy. She was kicking the dashboard of the car (a rental car…because of the accident), and had completely lost it. The staff could see the exhaustion and despair on our faces, and suggested it was time to take her to “Kids in Crisis”. It is a facility in Greenwich designed to help with kids having severe emotional distress. It offers a therapeutic environment for the kids, and gives the parents a small break. We took her. She moved in. She liked it.

The next few days were good, but a bit emotional and weird. It was nice to be able to clean up the house a little, and relax a little, knowing Lily was in good care and just 2 minutes away. The facility staff took her to school in the mornings, and worked on emotional coping skills in the afternoon. There was playtime and crafts, and we would stop by every day and take her out for a snack or a playdate. It was a break we all needed.

Tuesday, Nov 8th

School was closed for election day, so Mindy and I went to visit Lily, and started to make plans for her to return home. She was doing really well, and we figured a week was plenty of time for her to reset, and for us to breath and put things back in order from the previous week’s chaos. We had breakfast with her, talked a little, and then went to vote. 

We got home, and the phone rang. Lily had a meltdown after we left. The ambulance was called. By the time the ambulance came, she had calmed down, but the guilt that always follows her meltdown was in full force. She told the paramedic that she “just wants to kill herself”. Even though she is 7, and has never ACTUALLY hurt herself, the paramedic decided to take her to the hospital. 

Mindy and I met the ambulance at the hospital, and spent the day, night, and next morning talking with psychiatrists, doctors, social workers, etc. Everyone recommended that she needs more intense treatment. We agreed, and our Wednesday was occupied getting her admitted to Four Winds Psychiatric hospital. 

RECAP

In two weeks time, I was arrested, totalled my car, and had my daughter admitted to a psychiatric hospital. All of this happened just a short time after losing the job that essentially was our main source of income. I was mentally and physically done. Here I was trying to start my own business, and I had nothing left to give. I should have been networking, and keeping on top of my clients projects and moving them along quickly so they were excited and did more work. Instead I was sitting in my messy Living Room with Mindy, silently watching Netflix and wondering “WTF just happened to us”. 

Lily was in the hospital for nearly a month. We drove 60 miles round trip each day visiting her. Mindy was working some, but our focus was on Lily, and not our mounting financial troubles. We turned a blind eye to the inevitable. She came home for Thanksgiving, but then got sent back 2 weeks later. It was good in that is resulted in her being approved for the new school, but was one of the darkest times of our lives emotionally. 

2017

So now we are on a path. It is a good path. We have better tools for Lily and a better handle on what needs to happen next. She is by no means out of the woods, and we still struggle daily with meltdowns, but we at least now know what we are dealing with. The biggest problem to come from our 3 month disaster, is that we had severe financial damage, and we waited too long to try and deal with that. Lily needs structure, and we can’t offer that when we are frantically trying to take every job, and work every spare hour to recoup our losses and financial missteps. Mindy is working ALL of the time. She leaves for the city to teach at 7am, gets home at 3pm and then heads out to teach piano locally. She finally gets home at 7 or 8 pm to spend a little time with Lily and put her to bed. 

For my typical day..I drive an hour each way in the morning to take Lily to her new school, and then have from 10am-3pm to work with my small clients. I try to do a little marketing for new clients, and I also search and apply for any steady job that pays enough for an income AND to cover child care needs that would be required if I was working full time. At 3:00, Lily gets home so my focus is on her until Mindy returns at 7. Once Lily is asleep, I will drive for Uber if I have enough energy to drive safely. 

We have had a lot of help from close friends, family, and my parents…but they can only do so much. We have essentially stopped the bleeding, but we have a LOT to recover from. When we are both working around the clock to make any dollar possible, and still find ourselves not quite covering our basic expenses, it adds to the stress, which adds to the meltdowns, which adds to the mess, which adds to the exhaustion, etc. etc. etc. It is a cycle I have grown accustomed to, but it is not sustainable. The stress has become almost unbearable. 

I was against this campaign because I didn’t think we needed help. I didn’t think we deserved the help. When I saw the page this morning…the supportive comments, the donations, and the offers with household matters, I felt an amazing sense of relief. I DO need this. Yes, we could continue to fight through on our own, but why not accept help when it is offered? Regardless of bad choices in the past, and regardless of what was avoidable and what was unavoidable, I came to realize that we could in fact use this help to get back on track. This campaign for me, is a gift of being able to focus on not only Lily, but moving forward with a new plan. It is a way to continue our work towards recovery, without the added stress of what bills are going to get neglected, or when they are going to turn our phones off, or our internet off, or our power off. It is a gift of a fresh start and fresh eyes to move forward. If you helped us before this campaign, I thank you. If you already donated, I thank you. If you are planning on donating, I thank you. If you are broke and offering to help out in other ways, I thank you. If all you can do is share the page, or offer a prayer, I thank you. 

We still have a ways to go, and we will undoubtedly have many more battles ahead, but thanks to Sylvia, and all of the people who have supported us (you know who you are), I have hope.

Ryan

A note from Mindy: this post originally appeared on our facebook page at the beginning of March. Ryan- and the whole Smith Family- suffered one more blow when we lost his Dad, Tom, on March 15 to cancer. Ryan could use some prayers. If that’s your thing, send ’em on up.

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.

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