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.

Dear Black People: I Believe You

I am a white girl. I mean that in every sense of the word. 

Yes, I am a Caucasian female. But I’m also a “white girl.” I grew up as a cheerleader in Ohio. I met my husband in our college marching band. We moved to a small town where he was active in the Elk’s Club and I taught music. I go to Starbucks multiple times a day, and my hair is currently in pigtails. I love the fall and its pumpkin-flavored everything. 

So when my husband and I adopted a baby with brown skin and kinky hair, we assumed race wouldn’t matter. Because all you need is love. And if we all just treat everyone equally, race won’t matter any more. Our daughter can grow up color-blind, right?

Over the last seven years we’ve learned how wrong we were. And it’s hard to be wrong. I want to assume everything is fine and that this is the age of equality. We have a Black President, right? This is a more comfortable place to live. Assuming that if we all treat each other with equality, everything will be ok. 

But if we look at racism as something that exists “out there,” we excuse ourselves from taking any responsibility. White people, it’s time for us to step up. 

Let me repeat that. 

It is time for US to step up. 

We teach our children that if a friend is being bullied at school, they should say something. They should believe the friend, and they should do what they can to help. We do not teach our children to tell the victim she should simply stop making such a fuss. We do not teach them to ask the friend what she may have done to deserve the bullying. We do not teach them to convince the friend that her problems do not actually exist. We teach them to look the friend in the eye and say “I believe you. This is wrong. How can I help?”

White people- our friends are hurting. They are being bullied. And it is time for US to step up. 

We need to set our white fragility aside. 

WOAH WOAH WOAH DID THIS CHIC JUST CALL ME FRAGILE? You don’t know me. You don’t know my life. 

Look. I get it. I didn’t want to hear it either. But the fact that the phrase “white fragility” makes people edgy is PROOF THAT IT EXISTS

Trust me for a minute. I know you don’t know me. But I seem trustworthy, right?

What if I told you that I have seen my daughter disciplined at school far more harshly than her white peers?

What if I told you that my friends from church- leaders in the church- have been stopped, all over the country, for Walking Or Driving While Black? Like, on the regular. 

What if I told you they’re hurting? Would you believe me?

Here’s the thing. Trust is a choice. Believing someone is a choice

What if we start with “I believe you. I don’t understand it. It doesn’t make sense to me. But I believe you. Help me understand. Tell me how to help.”

No more shutting down the conversation by trying to prove them wrong. Just listening. 

The past few weeks have shown my husband and I that we need to speak out and share what we’re learning. We’re hosting a series of talks on the Thoroughly Modern Mommy Facebook page. We were live last Thursday at 9:30 PM, and we’ll be live again this week at the same time. We’d love to have you join us. 

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.

Wild Thing, I Think I Love You: Why my daughter can wear her natural hair however she wants

This is my daughter.

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She is not-quite five years old. She has a bold, confident, larger-than-life personality. She sings loudly in public. She dances with strangers. She makes friends everywhere she goes.

And she chooses to wear her hair in a way that reflects that.

And this is a problem for people.

Lily’s hair has been an issue for a long time. In fact, it has already been the subject of this blog. Twice. I’ve spoken about it in national media.

It’s a whole thing.

What I don’t understand is why it’s THE thing.

I did an interview with a radio host in Atlanta a few months ago. We had such a nice chat about transracial adoption. It seemed like I had really gotten through to her. (She opened the interview asking why white women adopting black babies was a trend.) And then. The very last thing she said before signing off, leaving me no time to respond, was “but those white women who don’t know how to take care of their daughters’; hair. That just makes me crazy.”

That is what you take away from learning about my family?

Before I go on. If you are new to this blog (hi!) please click the links above where I have talked about Lily’s hair issues before. I don’t want to repeat myself. But there is stuff in there you need to know. Really. Please.

I’ll wait.

(Jeopardy theme song)

Welcome back!

So as you can see, this is not a new issue. And it is exhausting.

Imagine my frustration, then, when someone who is on the fringe of Lily’s life asked me yesterday what “we” are doing about her hair. He is concerned that kids in kindergarten may make fun of her. (Heaven forbid a kid getting made fun of in kindergarten.) He had lots of advice. None of it was new information to me.

Immediately on the defense, I felt the need to go into everything I’ve explained above. I eventually brought Lily into the conversation because she was within earshot and I didn’t want her to overhear people she cares about talking about her like she’s not there.

And then he told her, “Do you know how pretty you would be if you let Mommy take care of your hair?”

And I saw red.

True, he tried to back-pedal a bit, saying that of course she was already pretty, she just would be even prettier…. And it would really bring out certain features… And she would be so pretty…

I got her out of there after an offer for him to go with her to the barber (I kind of want to take him up on it, for entertainment value. But I won’t put her through that.)

Shortly after I got home, I vented on Facebook. Because Moms don’ have afternoon coffee around the kitchen table any more. We have Facebook.

And yikes.

68 comments later and I realized how high emotions run with this topic. Almost all of the comments were supportive in the beginning. Then someone I hardly know told me the teacher was right, and white women need to understand how to take care of black hair. I won’t go into detail because it got really out of hand. I was so SO thankful to have so many friends stand up for my family. (Many of these friends are not white.) It went on for quite a while, and eventually she went back and deleted all of her comments. I am still getting messages of support from friends this morning.

So.

Here are some things I need the world to know.

1. My daughter is not pretty. She is gorgeous. She is stunning. She stops people on the street because they can’t getter over her charisma.

2. She calls her hairstyle “Lily Hair.” She chooses to wear it that way. Just like she chooses to wear princess dresses and sunglasses.

3. I believe she will outgrow the drama surrounding her hair. Just like she outgrew needing to poop in a diaper until she was 4 1/2. (“But WHY won’t she poop on the potty?” people wanted to know. “Have you asked a doctor about it? What about kindergarten?” I felt pretty strongly that she wouldn’t be pooping in diapers in college. One day she decided to be done with it. So she was. And never used a diaper again.) I feel strongly- as a Mom who knows her kid- that this will be the case with her hair. She is one of those kids who needs to decide things for herself.

4. I teach at a special needs school. I am around children with all kinds of special needs every day. Lily does not have very much in common with my students. There is a chance she could have sensory issues. I am looking into it. It would explain a lot. But she is bright. And she is passionate. And she is stubborn. (See “pooping in diapers.”) Given that, if there are issues she doesn’t outgrow, I would be the first person (Dad would be second) to say “let’s talk with someone about this.” Not only am I a teacher, I am someone who suffers from mental illness.

If there is an issue here, we will seek help.

5. I am not interested in teaching her that she needs to wear her hair a certain way so that the kids in kindergarten don’t make fun of her, nor so mommy and daddy don’t get judged by strangers. This is not the sense of self I have chosen to help her develop.

Now that all of that is out of the way.

Why on Earth does anyone care?

Seriously.

I mean, SERIOUSLY seriously.

It is hair. She likes it this way. It is a choice. She is a crazy kid. Her hair fits her personality.

WHO CARES????

I have been told it needs to be moisturized every day.

Yep. Just getting her hair wet in the bathtub is a two-man process. Getting any sort of product into her hair (wet or dry) is a wrestling match. LITERAL wrestling. Sometimes we don’t have it in us.

I have been told multiple times that it will lock and we’ll have to cut it all off in order to do anything with it.

Yep. Fully aware. This even feels likely to me.

And when that day comes, she will rock her super-short Afro just like she rocks her craziness now.

We have standards. She must be clean. She must be fully clothed when she leaves the house. She must eat healthy foods.

But this is hair. She is a small child. There are more important things in life.

Like friends.

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And ice cream.

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And helping.

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And the animals at the zoo.

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If you see these pictures and your takeaway is hair, I humbly suggest that it is your world lens that is out of focus. Not hers.

Throwback Thursday: Lily’s Challenge 2011

One of the coolest things about meeting Lily’s Birthmom when Lily was 6 weeks old was finding out why she chose us. It was when she saw the picture of Ryan building a set for my theatre company, Momentum Rep. (Momentum Rep fans, let me briefly take this opportunity to assure you that we are just on a restructuring hiatus. Hoping to return this summer!) Lily’s Birthmother wanted Lily to have an artistic upbringing.

Done.

By 18 months, Lily had been to two Broadway shows and I don’t know how many rehearsals. She was a Broadway Baby. And I was a bored Stay-At-Home Mom. So together (OK mostly me) we created “Lily’s Challenge.” I took pictures of Lily doing iconic things from musicals. (Or doing something that was a literal representation of a title, song, etc.) It caught on. And we’ve done it every year since.

This year, I’ll be hosting Lily’s Challenge here on Thoroughly Modern Mommy rather than the Momentum Rep site. So each Thursday leading up to February (the official month of Lily’s Challenge) I’ll be posting highlights from each year. Do you know what these pictures are? Leave your guesses in the comments. I’ll post the answers tomorrow 🙂

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Edit: the answers have now been posted in the comments! I also changed the title of this blog because, silly Mommy, Lily was 9 months old in February of 2010. These are the pics from 2011 😛

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