Tuesday, 24 January 2012

My daughter

“Mom”, my daughter gasps. Even through the phone I can tell she's crying hysterically. “They won't let me go to school today, they say I'm at risk!”

“Why would they say that?” I ask as calmly as I can.

“Because I told them I was going to skip and buy a sharp knife from Dollarama and cut myself,” her words gush like water breaking free from a dam. My heart sinks. They found a knife in her room last week. Her room is currently empty, except for her bed and a few safe items she finds calming. Her forearms have so many cuts covering them it's hard to find bare skin.

“But I've changed my mind and now they won't believe me,” she protests. “I'm not suicidal. Why won't they believe me?”

“Hon,” I reply, “You told me you were going to kill yourself last night. You told them that too.”

“I lied. I didn't want to kill myself. And the last time I did was ages ago. Why won't they believe me?”

I can't state the obvious. They don't believe her because she's saying she lied. And “ages ago” was two days ago. My timer goes off.

“Hon, I'm at work and my break's over. I have to go on the floor again. Can I call you after work?”

“Whatever,” she mutters back, “It doesn't matter. I've got nothing to live for and I won't be alive for much longer anyways.”

I end the call, after assuring daughter I love her (and hoping she believes me), then go find a manager and see if I can stay off the floor for a few more minutes while I call to see how daughter's doing.

I call the office where she's staying and am assured that she's under constant supervision and they have both the police and an ambulance on call in case daughter needs to go to the hospital. I know how that will end already. Daughter stayed at the hospital for a week in the spring and hated it. She'll tell the police and ambulance attendants that she really isn't suicidal, it was all a big misunderstanding. Then, after they leave, she'll tell me how she lied to them because she's not going to the hospital again. She can't go there again. She's already talking about slicing up her stomach and thighs instead so her arms will heal and the staff will get off her back.

That night she worries about going to school the next day. She wants to go but is scared she won't be able to handle being around all the kids. It's too much stress and she doesn't think she can deal with it right now. She's scared she'll get angry. Luckily she has a safety plan at school and I'm able to remind her of it.

“Try,” I urge her, “but only do what you can handle. If it's too much stress, go to the resource room and catch up on some of the work you've missed. Or go to the school library.” She assures me she'll try.

I call her cellphone the next evening and she answers with a cheerful, “Hi Mom” then continues on to detail the silly things her friends did in the cafeteria that day and what her boyfriend texted her earlier. Her voice is light and lively as she skips through her day to day activities. I wonder what she's going to be like tomorrow.

Daughter was born on a sunny summer afternoon, sixteen years ago, big and healthy after a perfectly normal pregnancy and delivery. We settled into nursing well and we went home expecting no issues.

She was colicky and was usually fine, as long as I was holding her. I developed very good upper arm strength toting her around almost constantly. It became frustrating after a while as she wouldn't go to anyone except me, not even her father. I had the occasional break. When she was screaming with colic and no one could settle her, then her Dad would walk down the street with her and buy a coffee. This gave me 15 minutes of quiet. And sometimes I'd hand her over and walk next door to a friend's house for tea. Most times she'd still be crying for me when I came back.

By the time she was a year old she was okay with her father but still nervous around most other people. When it was just us in the home, she'd laugh and giggle and run around playing. But if a neighbour showed up at the door she'd stop and stare solemnly until they left. This prompted one neighbour to inform me that my infant daughter was depressed, as she didn't think that baby had smiled once in her entire life. She'd certainly never seen it. I pointed out several pictures of daughter grinning. The neighbour shrugged. Maybe daughter smiled sometimes but it just wasn't normal.

When daughter was three years old I was more concerned. Her shyness hadn't gotten any better. She was terrified of all men, except for her father. Even her grandfather, whom she saw weekly. She wouldn't say a word to anyone outside immediate family. Not our neighbours, not the grocery clerk, not our family doctor. People would say “hi” to her and she's stare back at them unblinking. This prompted quite a few people to praise me for stranger-proofing her. Meanwhile I'd been trying my hardest to get her to respond to people outside family. There were a few breakthroughs, she started speaking to a neighbour and she smiled at the grocery clerk. Then she turned four and school started.

The initial meeting between the teacher and daughter was a disaster. Daughter wouldn't say a word to her, just stared. I did some research online and came up with selective mutism. Just as I was about to make an appointment to see the family doctor for a referral, her teacher came to me with a big grin on her face. Daughter had come up to her after class and announced that she realized she was going to have to speak to teacher and was going to talk to her from now on. Within days she'd extended that to all the teachers and, by Christmas, she was on stage at the Christmas Concert, speaking into the microphone and asking her fellow students and parents to “always wear a hat so that your brain won't freeze”.

Kindergarten was a breeze for daughter. She made several friends and both years the teacher assured me she could have moved up a grade by Christmas because she'd already learned everything she needed to know. She was proud about her budding reading skills, loved to draw, and enjoyed counting everything in sight. By grade two she'd decided she was going to be a “mreen biolagist” so she “cood swom with orcas and blue whals”. Spelling has never been her strong point but we knew what she meant. She was obviously bright and she could do it. If she still wanted to be a marine biologist when she graduated from high school, nothing would stop her.

There were some concerns. Daughter did not like change and had a temper. I can remember her screaming outside the grocery store because I hadn't told her ahead of time that we'd need to pick up milk on the way home. And she had some issues with peers. She spent all summer playing at the park with a local girl. One day the girl walked up to daughter in the school yard and said “hi [daughter's name]”. Daughter just stared at her until the girl walked away. She didn't remember the girl. Why would she say “hi” to a stranger? Then came another social lesson. If a kid comes up and knows your name, chances are you know them so say “hi” back.

As the kids got older and expected a bit more in the way of social skills, daughter began spending increasingly more time on her own. Something was obviously going on but I had no idea what it was.

Then son started his testing for autism and I had a bunch of questions to answer. As I went through the checklists I found that an equal number of them resembled my daughter. The questions that didn't match my son, often matched my daughter. It was like they'd divided the autism checklist between the two of them. I said to the doctor that I'd be bringing daughter in for testing the following year. He thought I was joking.

The next year brought more heart ache. Daughter's last friend pulled her aside and told her not to speak to her anymore. She wanted to make new friends and being daughter's friend was holding her back. I cringed later when the kids were getting awards at school and daughter's former friend went on stage to get an award for tolerance and being such a great friend to fellow students, for not letting peer pressure get in the way of standing up for friends.

Other kids, who had been friendly, were now avoiding her in the hope they wouldn't get teased. The testing started, and the psychologist noted that daughter was spending lunch and recess walking around the yard, totally by herself. Even during gym she hung around at the edges away from the children.

I was left speechless when daughter got accused of writing something nasty on the bathroom wall. The principal informed me that they knew it was daughter because four girls (all of whom were friends and had been actively teasing daughter) came up to her and told her that daughter had done the writing. It didn't matter that we didn't own a marker that colour or that the writing only vaguely matched daughter's hand writing. Why on earth would four girls make up a story like that? I wondered if that principal had been home-schooled on some remote farm or something. How could she not know what grade 7 girls were like? The girls then accused daughter of smoking in the bathroom and the same song and dance occurred. The principal began seeing me as one of *those* parents.

At the same time, daughter was having issues with her father. He didn't see the kids very often at the best of times, often disappearing for months at a time. But this time she'd refused to see him for a visit shortly before a half-year disappearance. Even though it wasn't the reason he'd disappeared, it wasn't even the last visit before the disappearance, daughter firmly blamed herself. If she'd gone to that visit, instead of having a sleepover and helping out at a garage sale, her Dad would still be there. She became terrified I'd disappear. Waking me up at midnight crying because she was scared I was gone and hanging around outside our bathroom just in case I flushed myself away or tried to escape through the ceiling fan. I talked to the school social worker regarding counselling and was told that daughter and I had a close relationship and talking to me was all the counselling she needed. Flattering but I was still worried and went to a local organization for help. The organization had us meet with a psychiatrist. I'd been under the impression that the friendly lady I'd talked to on the phone was going to meet with us and had passed that information along to daughter. She was left speechless when faced with a blunt, harsh looking man. The psychiatrist glanced at us as we walked in the room then announced, “She is depressed.”

I was taken aback by that pronouncement, especially since it had been made without us even speaking to him, and commented that daughter had been laughing and joking around in the waiting room, plus she was very shy and often scared of men.

He bristled, “I am a psychiatrist and I know these things.”

I decided not to argue and let the introductions begin. A few minutes later daughter had neither looked at or spoken to the doctor. I let him know that she was being tested for Aspergers.

“She doesn't have that!” he snapped. Still I bit my tongue. He decided on art therapy for daughter to help deal with issues around her father and suggested a parenting group for me in order to help deal with teen issues. I was told that once I took the parenting group for me, more help would be available for daughter.

The group held nothing for me. The parents in the group were dealing with teens robbing stores, smashing furniture, setting fires,and punching holes in the walls. I was dealing with a girl who slammed her door occasionally and screamed. I held out until I found out that they were not only still insisting daughter could not have Aspergers but were using her counselling sessions to explain to her, in detail, why. Even once the school psychologist confirmed the diagnosis and even after they'd received a copy of his report, they still insisted on telling daughter she'd been misdiagnosed. After all, their psychiatrist, who had only ever seen daughter for 20 minutes and never spoke to her, didn't feel she had *that*.

That was not what the counselling sessions were for so I pulled her out of the organization. The school had said I could deal with daughter, maybe that was the best option. Besides, since her Dad had reappeared, daughter was no longer worried I was going to disappear while she was sleeping or while I was in the bathroom.

Grade 8 started and I found it harder and harder to get daughter out to school. If she went on time she had nothing to do but stand outside with all the other kids under minimal supervision. She'd much rather show up late when the school yard and hallways were empty. Within weeks I was called into the office.

The principal sat behind her desk. “We're concerned about your daughter's chronic lateness,” she announced in serious tones. “What are you going to do about it?”

“I'm worried too,” I confided. “Daughter's been scared to come to school on time. She says the kids are teasing her and pushing her around in the school yard and shoving her into lockers when she's in the hall. She's scared to go to school. What can we do to make her feel more safe?”

With that her whole tone changed. She relaxed, then said flippantly, “Well you know [daughter's name]. She's just late, that's her personality, there's nothing we can do about that.”

I looked into moving daughter to another school but daughter refused. By this time she'd made a couple of friends and wanted to stick it out for the rest of the year. Despite many sick days due to a nervous stomach and almost daily lateness, the principal never called me back in for a discussion. And daughter passed all her classes, moving on to high school in the fall. I ran into the principal at an event the following year and took the time to inform her on how well daughter was doing in high school. Daughter had made all new friends, was never late, and rarely absent. Plus she had dreams of becoming a child psychologist so she could help other kids through rough patches. The principal quickly moved on to talk to someone else.

The following fall, daughter went on a family trip with her father. He was already finding the kids' transition into teenagers baffling. He had no idea how to treat them and fell back on what worked when they were small. Plus this was a formal family event with lots of people watching and he wanted to show them what a good father he was and how good his kids were. Her outfit was treated like a call to war. And he certainly didn't appreciate her wanting reasons for the things he asked them to do.

While he was looking for kids who would look good for his family, daughter was looking for her Dad to love her for who she was and not just what he wanted. It was a recipe for disaster. They came back not speaking to each other. Their father made a point of loudly proclaiming to son, “I love you!” before stomping out without a word to daughter. When daughter started talking I discovered he'd spent the weekend referring to her as “that one”. Comments like “I'd be having a good weekend if it wasn't for that one!” Complete with glaring at her. Within days of the visit, daughter started cutting her arms.

Soon, whenever daughter got upset, she'd find a picture of herself and smash it down the hall. Then she'd grab a shard of glass and lock herself in her room to cut. She validated this with the excuse that it was her own picture, no one really wanted it as no one cared about her. I took her to the hospital for help but daughter wasn't suicidal and self-harm wasn't enough to get help. Thankfully I'd put her on a wait list for a psychiatrist a year and a half earlier and, by December, daughter reached the top of the list. It was like Christmas had come early.

Other than the 20 minute intake appointment several years earlier, neither one of us had ever seen a psychiatrist. I had no idea what to expect. Daughter had just gone on anti-depressants from our family doctor and the psychiatrist increased them slightly. Daughter's moods seemed to cycle so the doctor soon decided she should be on a mood stabilizer as well. Each month we'd think she'd found a good combination, then daughter would have a few bad weeks. Then the psychiatrist changed the medication slightly and we'd go on again. And I watched, panicked and not knowing what to do, as daughter went from saying she'd never kill herself, to saying she'd thought about it but wouldn't seriously try, to thinking maybe it would be a good idea after all... just not right now.

One day, in early May, daughter told me she could not go to school that day as she was thinking even more seriously about suicide. She wanted to go to the hospital. She needed help. Could I please take her? I warned her it was going to be the same as other times. We'd sit in the waiting room for hours before seeing a psychiatrist, who would then tell her she wasn't serious enough to be admitted. Then we'd go home. And, darn it all, I had things to do that day. Things I wouldn't mind putting aside if she was honestly going to get help... things that weren't going to get done while we sat and accomplished nothing. But how do you say no to desperation?

Sure enough, after hours of waiting we were told she wasn't serious enough. People usually don't get admitted unless they've swallowed pills or show up with slashed wrists in an ambulance. I felt like I was kicked in the gut. It didn't matter that she was rapidly becoming suicidal and we all knew it. Everyone was going to sit and wait until she tried to kill herself first. The psychiatrist agreed that her current medication might not be the best choice and changed her back to ones that seemed to work a bit better a few months ago.

Two weeks later, daughter had a psychiatrist appointment. The psychiatrist was furious when we got in the room, demanding to know why we snuck around behind her back to have daughter's medication changed. Why didn't we wait until her appointment? I was baffled. If we were sick between doctor's appointments, and went to the walk-in clinic our family doctor wasn't panicking that he'd been replaced. Why was her psychiatrist convinced we were going against her for searching out emergency help? When I told her daughter was very upset and seemed to be in crisis then, we couldn't wait two weeks, she put her face right up to daughter's and loudly asked how she'd been feeling... how had it been different from her last appointment... why did she decide she couldn't wait... how come she hadn't said anything at the previous appointment (weeks before the hospital visit). Question after question with no space for daughter to answer. Daughter began to cry. Immediately the psychiatrist stepped back eagerly and announced that daughter was very unstable and needed to be admitted right away; her crying was proof of that. I didn't think crying in a situation like that was unusual. But a hospital admission was what we'd been looking for. Daughter was torn, she'd decided during our last trip to the hospital that it wasn't worth it but if it could help... Within hours she was admitted. The psychiatrist informed us that daughter was most definitely bipolar and would be starting lithium.

The next day I called her school and warned them she probably would not be back to school for another week. They agreed to work around the hospital stay and we'd sort out exams later. I got a call from daughter the following morning, she was being discharged. I got to the hospital to find out that the psychiatrist discharged her claiming absolutely nothing was wrong with her and she did not need a psychiatrist. But kept her on the current anti-depressant and mood stabilizer, claiming our family doctor could handle refilling those. Our family doctor was not impressed with that bit of information.

The mood swings were becoming more severe. We had no pictures of daughter on our walls and were running out of glasses. I tried to keep on top of the moods but couldn't figure out what was triggering her. She'd laugh at something one day and rage the next. Sometimes I'd wake up to her screaming in the middle of the night. Then one afternoon I ended up on the phone with 911, requesting immediate help as daughter was locked in her bedroom, looking for a bottle of pills to take so she could kill herself. Soon we were in an ambulance, heading to the hospital, where she stayed for a week.

If I thought the mood swings were bad before, they were a hundred times worse after she was discharged. She'd be up one minute and down the next. I took her brother out for a nature walk, something daughter doesn't enjoy, in the hopes she'd get some quiet time to do her school work. Instead I was informed by her (when we were an hour away) that she knew we'd left her behind because we didn't love her and she'd be dead by the time we got home. Another time I went to the store to pick up a few items and came home to broken glass all over one side of the living room.

Son was withdrawing more and more into autism. Baby talk, hand flapping, echoing everything we said. Meanwhile that irritated daughter, who would lash out at him... which caused him to withdraw even more. I grew scared to leave the two of them alone together. Eventually it became obvious that daughter needed more attention and supervision than a single working Mom could provide.

I wish there was a happy ending I could write here. Instead I'm left feeling baffled, confused, and alone. When a child says “Mommy, my tummy hurts”. I know what to do. A hot water bottle, a bucket, a soft blanket, and a mug of peppermint tea. But what do you do when your child's thoughts are hurting her? Even when my daughter was choking, I was able to help her until she could breath. How do you help them breath when they're wanting to stop? I could calm her down and keep her coughing until her airway cleared. Now I'm left offering platitudes and putting her on multiple year and a half long waiting lists in the hope of finding help before it's too late.

I wonder how things could have been different. From co-sleeping with daughter more to moving to a new town and different schools when the teasing and bullying got worse. I go over the past, looking through albums, assuring myself that, yes, I did hug her... yes, I did read stories. Was it enough? Eventually I come back to realizing, it doesn't matter what I could have done. Wishing won't change the past.

Then I call daughter and listen to how her day went. Hoping for a good day and hoping for many more for her.


  1. Oh. My. I am so stunned. I am so..... Wow.
    I desperately want to say I'm so sorry, but I don't want you to think that I'm sorry for you. Within about two paragraphs, I could have finished writing your blog for you (with some minor changes).
    First, I'll add you and your son and daughter to my prayers.
    Second, I have two daughters.
    Third, my youngest does not have Aspergers, but all of the other conditions you've mentioned. I'm afraid that she is, in fact, depressed, but has been able, thus far to develop personal coping systems to deal with it and refuses to take meds. She's also 19 and through HS and onto bigger and better things. Her symptoms have subsided somewhat and/or she's become better at coping.
    However, I've worked for 15 years with ASD children and have grown to absolutely LOVE all of what and who they are. I've learned so much from my students. I've learned patience. I've learned compromise and teachable moments. I've learned to speak, wait, wait, wait......and wait some more. I've discovered I'm capable to being quiet to allow processing time.
    I want to thank you for sharing your amazing story and opening up your heart. As I said, all I can do is pray. But God is good.

  2. You're a strong woman, and your daughter and son have learned that from you, too. I hope she gets the help she needs, and the diagnosis she needs to get that help. Coming from an Aspie, it is hard, but it does get better.

  3. Always (HUGS). Thank you for sharing your story. My sister went thru a horrendous, awful, scary time when she was younger. It's 6 years past her last time in hospital and she is a healthy, happy and at peace young woman. There is hope. My heart is with you and your dd - who is a beautiful young woman, from everything I have heard you say. I hope she can realize how strong she really is and how valuable she is not only to those close to her and you but also to people far away, like myself.

  4. Thank you for sharing this story with us, Kathleen. It's such a heartbreaking tale, but I see a lot of hope there. Your daughter clearly loves you and trusts you very much to be able to tell you when she feels like hurting herself.

    When I was younger, I didn't have that relationship with my mom. In fact, I was terrified of telling her anything bad in fear of her reaction. She would rant and rave if I even told her I was sick and staying home for a day.

    Like your daughter, I had my share of mental health issues when I was younger. In fact, I'm still recovering from them. I was depressed at a very young age. I have a feeling that this was because I was sexually abused when I was about 5 years old. Though, it only happened once, it was enough to leave lasting scars.

    I was also an outcast at school, no matter how hard I tried to fit in. I was pretty quiet and buried myself in books. I also thought a lot. Still do. I'd think about a huge wide range of subjects - why things work, why they're the ways they are, why I felt so horribly, about how things were easier if I were dead.

    I never cut myself, but I have punched myself, and I would take pins and needles and stick them in my legs. I'd also bite myself when I was very upset. I'll be the first to admit that I do have a bit of an anger problem, but that's getting better. It's something I have to work on regularly.

    I want to tell your daughter that things do get better. They're still one hell of a struggle, because life just sucks sometimes, but K-HS is probably going to be the toughest. Adults look at kids as sweet and innocent, but that is so far from the truth that it's ridiculous. Kids are nasty, mean, and they'll push you until you're about to break. (At least some are). There are the nice ones, but you have to really look for them.

    Anyway, please tell your daughter that there are people out there like her. That are surviving. People like me that didn't have the easiest childhood, or even adulthood. And, tell her that if she ever wants to drop me a line, I'll be there. I can be a sounding board if she needs one.


  5. Kathleen--what courage you have to take the time and effort to write this all out for the world. You're a wonderful mom, and I know firsthand how hard it is when you're doing everything you should and it just doesn't seem to work. I was also a very depressed teen, and although not quite self-injurous (I don't like pain!), I liked to create my own misery and often chose reckless behaviour even when I knew better. I never talked to my mom since she had so much to deal with already--my little brother had major issues and my dad had his heart attack and quad bypass...I was supposed to be the "good" one. Ha Ha!
    I do want to ask, or suggest, that she gets a good blood panel done. She sounds like she might be B12 deficient, as well as Omega 3 and Vit D. And since you're vegetarian, B12 is especially critical. While I doubt supplementing with B12 would "cure" her, it can make a huge difference. I also wonder if you've tried being gluten free with either of your kids? Some kids who tend towards violence are also allergic to corn, which includes corn syrup which is in everything these days. And lastly, many people see great results by being (very) low carb. I'm not anywhere near that low of low carb, but my mood swings have lessened considerably! I also see this in my youngest who has mood swings and gets physical--she needs a low carb diet, as well, I notice when we've run out of Omega 3 supplements because both her and her brother (who was suspected of ASD when litle, and does have SPD and anxiety issues) act differrently.
    High school is a really really rough time. It does get better. Hang in there.