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.

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