This is adapted from something I posted June 18, 2010: Autistic Pride Day. I’m bringing it over here because I’m thinking that if you or a loved one is newly diagnosed with Asperger Syndrome, you might not want to hear any more doom and gloom. You can find plenty of that in the many wonderful, helpful, but somewhat depressing textbooky tomes that are available at your local library. Asperger is challenging, yes. But it is also kind of awesome.
Autistic Pride Day. I know what you’re thinking: Didn’t I just see a bunch of copied-and-pasted status updates on Facebook about that a few months ago? Nope. That was World Autistic Awareness Day, which is April 2 every year. World Autistic Awareness Day is about letting you know that autism exists. Autistic Pride Day is about letting you, the neuro-typical person (or “NT” to us hipsters) know that autism can be kind of awesome.
There is a whole world of autistic pride and politics that I’m just learning about. (The most helpful piece of advice I can give you is that getting worked up about the politics of autism does not help the newly-diagnosed person one bit.) Autistic Pride Day is promoted by Aspies for Freedom, an organization that pushes not just for autism awareness, but awareness that autism has both advantages and disadvantages.
Let me just say this: I’m pretty sure the people at Aspies for Freedom are talking about people with fairly high-functioning Asperger’s Syndrome. If you’re the mom of a severely autistic child who’s still nonverbal at age 6 and never smiles at you, you’re probably ready to tell the nice people at Aspies for Freedom that neurodiversity can suck it.
Little Dude is more along the lines of the high-functioning Asperger’s. And I can certainly say there are distinct advantages and disadvantages to our situation.
In the spirit of Autistic Pride Day, here is my Top Ten List of Asperger Syndrome Advantages and Disadvantages.
Disadvantage #10 Little Dude eats the same thing, every day.
Advantage #10 Meal-planning is a snap.
Disadvantage #9 All Legos, all the time.
Advantage #9 May grow up to be the next Frank Lloyd Wright.
Disadvantage #8 Obsessive-compulsive behavior means we can’t leave the room unless the television and the power strip are turned off.
Advantage #8 Asperger’s Syndrome is the new “green.”
Disadvantage #7 Makes odd, surprising noises.
Advantage #7 Maybe other kids will think he’s beat-boxing.
Disadvantage #6 Despite having advanced vocabulary, Little Dude’s speech is sometimes very unclear.
Advantage #6 Woman behind me in check-out line doesn’t realize Little Dude is talking about testicles.
Disadvantage #5 Does not make eye contact with friendly pediatric nurse.
Advantage #5 Does not make eye contact with anyone at Walmart.
Disadvantage #4 “Motor-planning deficit” means he struggles to take off his own shoes.
Advantage #4 “Unusually intense, narrow area of interest” means he can beat adults at Wii Lego Star Wars.
Disadvantage #3 Talks incessantly about Legos, Star Wars, and Lego Star Wars.
Advantage #3 No longer talking about Dora.
Disadvantage #2 Sometimes says insensitive or inappropriate things.
Advantage #2 These things are hilarious.
Disadvantage #1Random muttonheads Concerned strangers ask me if I think he’ll be ready to potty-train sometime soon, why is he flapping his hands, and oh, you mean he’s like Rain Man?
My mom was 14 when she had my sister. Together, they struggled through life and became best friends. When my mother was 23, she met my father, 22 years her senior. After a whirlwind courtship, they married and divorced six months later when he announced that he was going back to his first wife.
A few weeks later she found out she was pregnant with me. She told no one that she was pregnant. She starved herself so that she didn’t gain weight. I was born full-term weighing a whopping 4 lbs 12 oz.
I don’t have many memories from childhood, except for being by myself. Starting in kindergarten, I walked home alone, where I stayed, alone, until my mom came home around 7 pm. What I do remember is being sad, lonely, and ANGRY. I had no idea who my father was, my mother was never around, and my sister resented me for being born and taking away her best friend.
The first time I tried to kill myself, I was only eight years old. I wrapped a phone cord around my neck until I passed out. My mom found me when it was time for dinner, but she never said anything. A teacher told a school counselor about the bruising on my neck and I was called into the office. I laid it all out. I told her about how sad I was because no one wanted me and I knew it would be better for everyone if I just wasn’t around.
That’s when I started therapy.
After a couple of months in therapy, my mom stopped taking me as the appointments greatly interfered with her work schedule. I got sad again. I learned that pricking myself with needles felt really really good! I would carry safety pins and sewing needles with me at all times. I got into sports, made a few friends and got to spend more and more time away from my house. I managed my depression, by myself, and kept my “pricking” private.
But just as things were turning around for me, my mom decided to move to Pennsylvania to be with some guy I’d never met before.
I was 11 and she moved me across the country to an alien nation. I was more alone than ever. Stranger in a strange land. People made fun of me for my “Texan accent.” I listened to classic rock and everyone there listened to Hip-hop. It was so hard.
I finally managed to make a couple of new friends but the depression grew worse. My safety pins no longer did the trick. I needed something else. I discovered cutting. It felt even better than pricking, and the euphoria lasted far longer. Unfortunately, it was harder to hide. The school nurse saw my cuts and called my mom who then had me committed to a psych ward.
I was 12.
After my release things got even worse. My mom’s new boyfriend was drinking more than ever and he started getting physical with me. In a 6 month period, he broke four of my bones, and fractured two ribs. The school nurse called the authorities. After an “investigation” it was dropped, because I was a “clumsy” child and hurt myself. I started cutting again, this time on my legs, because it was harder to see that way.
From 1998-2000, I tried four more times to kill myself. Finally one of my friends’ mothers (after seeing bruises from my mom’s boyfriend) marched into my house and packed me a bag. She told my mom that until she was ready to be a real mom, I’d be staying with them.
I lived with them for three months. During that time, they paid for my therapy and my medications. She took me shopping and we had girl time. I wasn’t so alone anymore! Then they moved… Her husband’s company was relocated to Florida, and of course I couldn’t go.
My mom finally got her shit together and we moved into a small cottage. She still worked all the time, and I was alone. I did drugs, primarily heroin. I became angry and defiant. I was expelled from three different schools. My cutting got worse.
I was diagnosed with Borderline Personality Disorder.
I met my first husband when I was fifteen and a few months before my seventeenth birthday I found out I was pregnant. By that time I was on a LOT of heavy duty meds. I was drugged constantly, either by pills prescribed to me, or the drugs that I chose to take. I quit everything, cold turkey. No more anti-psychotics, antidepressants, pot, heroin, cocaine, not even a cigarette.
My daughter gave me a reason to live. She saved me.
It’s hard for me now (nine years later) to wear shorts or short sleeved shirts, because my scars are still very visible. My kids haven’t really asked me about them yet, but I’m preparing for the day. I don’t know how to tell them about what I went through. I do know that I can tell them that they have saved me, in so many ways.
I can’t say that I haven’t been through some rough patches. And honestly cutting and suicide still weigh on my mind, but I fight the good battle every day and I will continue to do so. Borderline Personality Disorder doesn’t just go away, so the only thing I can do is work on myself every day. But coming here, and seeing what EVERY ONE OF US goes through, gives me hope.
Every amazing person that posts on this site is my hero, THANK YOU.
Thank you for giving the misfits a place to lay our weary heads.
Living with depression is no small feat. Getting out of bed is hard – so hard- some days.
This is her story:
I am one of those people that has to make a decision everyday; I make the decision to keep trying. Keep trying to live. To improve. To get out of bed.
You may think I’m over-dramatizing, but as a person with chronic depression, a person without medical insurance, a person with a daughter who has special needs, a person without a job or an income, sometimes getting out of bed is a victory.
Sometimes I’m able to accomplish one or two things while I’m up, those are the good days.
Other days, once I’m out of bed, it’s a battle not to get immediately right back in. Sometimes, I start thinking about suicide. On those days, I have to remind myself of my decision to live. Sometimes, I have to tell myself to wait for tomorrow to decide anything. And when I do that, I know that I have to decide to live again tomorrow.
Some days are a little lighter. I can breathe and accomplish something and I might even be able to laugh. Those days give me a sense of hope. And sometimes that little dash of hope is all I need to sustain me through the darker times that lie ahead.
But, I know, as long as I keep making the decision to live – I will at least be here another day.
(ed note: keep on fighting the good fight. Much, much love to you, Prankster)
My father is a terrible person. I’ve written my story before and I’m sure you will absolutely agree with that statement. What he did changed my life forever.
I’m in therapy right now. I started in April, three months after I was given the diagnosis of postpartum depression. I started anti-depressants right away, but I was too scared to go to therapy. I didn’t want to see what would come out.
But I went. And last month, something happened that I wasn’t expecting.
Anger. Lots of it. So much anger.
Towards my mother.
I didn’t know where this came from. I know it isn’t her fault that my father did what he did. She had no idea. How could she? It was actually because of her that it stopped.
So where is this anger coming from?
It could be from the talks we had after everything came out. She told me never to tell anyone about what happened, especially any boy I was dating. If they knew what happened, they wouldn’t like me any more. Boys don’t like to date, as she put it, “damaged goods.”
It could be the times we talked about marriage. She told me she took marriage vows seriously. In sickness and health. She believed my father was very sick, which is why he did what he did. If she’d had her way, she would have stayed married to him. The only way she would have left him was if he ever hurt us kids. But, like I said in the previous post, I guess what I went through didn’t count as being “hurt.”
It could be all the guilt she would make me feel any time I did ANYTHING with my father. I’ve never wanted a full father-daughter relationship with him, but it wouldn’t be so bad if we had SOME relationship. But anytime I talked to him on the phone or had lunch or dinner with him or invited him to anything, I would get a guilt trip.
It could be the fact that depression is bullshit. In high school, I was very depressed. She told me to knock it off and get over it, This family doesn’t turn to drugs to help us.” Enter extreme guilt when I started taking Lexapro for my postpartum depression.
It could be the fact that she uses me as her personal therapist. I’ve heard everything about her current marriage; the ups, downs, and (lack of) sex life. And when I tell her I don’t want to hear these things? “When my mother was alive, she and I were best friends and I always hoped that I could be best friends with my daughters. Sorry for wanting to confide in my best friend. I guess I’ll just have to go back to living in silence.”
It could be the fact that she told me several times that if it hadn’t been for my sisters and I, she would have killed herself a long time ago. She even “jokes” about committing suicide. But she masks it by saying she doesn’t want to take pills or anything. She wants to kill herself with chocolate. That way no one will know she’s trying to actually kill herself.
I wonder where this anger towards her is coming from?
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
I instinctively checked the monitors as I approached my daughter who was sprawled out, getting a sunbath underneath the warmer. Her stats were picture perfect, I noticed, breathing a little more easily, and I made my way slowly to her bedside where she was sleeping peacefully.
I slogged my soggy bottom from the wheelchair onto the rocker that had been shoved into her tiny NICU room; barely even a room, more like a broom closet. She was sandwiched in between two misbehaving (“misbehaving” means that their alarms were constantly blaring) babies who I could hear misbehaving.
Most of the NICU, I noted as I was wheeled past, was full of Feeders and Growers. That’s NICU slang for babies that were, for whatever reason, finishing their gestation outside of the womb. It”s always evoked a pleasant picture of a garden of freshly hatched babies. A Baby Garden.
Of the other babies that I could see cooking away merrily in their incubators, Amelia was the biggest, fattest, and likely the only full- term baby there.
According to her room placement, though, she was the most ill.
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
My ass firmly planted now onto the chair (I’d had a traumatic vaginal birth mere hours before), I held Amelia’s lone sock as a talisman, hoping it would ward off the Bad News. I was preparing to nurse my daughter again, just waiting for our nurse to come and help me sort through the tangle of wires my daughter was attached to.
It was hard to believe only thirty or so minutes had passed since we’d heard “there’s something sinister on your daughter’s CT scan.”
Our–Amelia’s–nurse walked in and introduced herself to The Daver and I. I was openly weeping, holding onto Mimi’s sock and my iPhone – where the Pranksters live!- as a life preserver. The Daver was pale(r) and stalwart.
I handed off the box of Kleenex that had been pressed onto my lap as we left Mother/Baby and my daughter was brought back to me, hooked up to so many wires that she looked like an electrical outlet. The nurse stood there, kindly talking to us, but not revealing anything.
We still had no idea what was wrong with our daughter. A diagnosis would take weeks. Her life, as far as we knew, hung in the balance.
I begged the nurse to have the house neonatologist visit my daughter as the pediatric neurosurgeon was busily operating on someone’s head somewhere other than the NICU. It’s probably good I didn’t know where he was or I’d have stalked him down and dragged him to my daughter for a diagnosis.
The neonatologist – the one I’d met a lifetime ago in the delivery room, the guy who was always drinking a bottle of something – he came over to Amelia’s “room” and he told us that there was a “bright spot” on Amelia’s CT Scan. He didn’t mean diamonds.
I had no fucking clue what that meant and he didn’t follow it up with much, although I did see his lips move, I couldn’t understand his words.
After the doctor left, the nurse came back in to ask if we’d wanted to see the chaplain; rather to have Amelia meet the chaplain. A thousand times yes.
She was amazing. Just. Incredible. For the next year, it was her words, her warmth and compassion that I kept coming back to. She blessed my daughter. My daughter was blessed.
And she is so, so blessed.
We sat there in the NICU; just the three of us. I couldn’t tell you how long we just sat. Time in the ICU is timeless. 4 AM and 4PM are the same.
Soon enough, I had to go upstairs to change my undergarments and ready myself to see my boys. My sister-in-law was bringing my sons to visit, and I had to put on my Poker Face. Given the raw, chapped and bleeding state of my cheeks, was going to be damn near impossible.
Back in my room, I saw that I’d gotten some flowers and a basket from two of my Pranksters and it made me cry. Then again, I think the package of Saltines that had been ruthlessly thrown on the floor the night before might have made me cry. I wasn’t in a Good Place.
Alex and Ben came in a bit after I’d gotten cleaned up. I held Alex very, very close as Ben showed me some pictures he’d colored of Amelia. Ben knew his sister was sick but Alex (only 22 months old) had no idea what a “sister” was, let alone what being “sick” meant. I held them and faked normal until I got the call from the NICU. Time to nurse the baby.
Talk about being torn.
I cried as I said goodbye to my youngest son–my eldest just wanted to get home and I couldn’t find fault with that–and he cried and yowled “Mooommmmyyy” as he was led away to the elevators that would dump him back into the outside world.
By myself for the first time, I tearfully found my way back to the Secret Place, The Land of Tears. Never have I felt so sick to my stomach in my life. People stared sympathetically as I wept in the elevator, leaning against the walls for support.
I begged God to let her live, even if she was retarded and her IQ was 43 and had to live at home for the rest of her life, just please let my baby girl live. I didn’t care what was wrong with her so long as she made it out alive. I begged God to take me instead. I’d had 28 wonderful years on the planet already, and she was less than 24 hours old. Certainly, I’d give my life to save her in a moment.
Hear my prayer, hear my prayer, hear my prayer. Please God, hear my prayer.
After scrubbing the top 50 layers of skin from my arm and signing a reasonable facsimile of my name, I wobbled to her bedside. There she was, my girl. Perfect stats, thrashing about her isolette, pissed as hell and looking for something to eat.
In the brief time I’d been gone we’d gotten a new nurse.
When she came in to assess my daughter and saw me crying as I nursed my girl, for the first time in a day, someone asked me what was wrong. I explained that I didn’t know if my daughter would live or die. I told her that no one had told us what could be wrong with her, what that bump COULD be, why she was in the NICU, nothing.
She looked pretty aghast that we’d been told nothing, and for the first time, someone tried to reassure us. I remember leaving the NICU several hours later slightly less burdened.
That night, we ordered a pizza and tried to relax in my somber room. We tried to let go of some of The Fear. I didn’t feel much like celebrating anything, so no balloons, no stuffed animals, no signs that I had just given birth decorated my room. I could have been on any floor, in any room in the hospital.
The nurse brought me my Ambien and the NICU called to tell me that they would bring my daughter up to nurse every 2 hours (the NICU runs like clockwork. It’s no wonder that new parents struggle to care for their NICU graduate when they get home). I turned on the sound machine to blast white noise over The Daver’s snores, and waited, trying to fall asleep.
Unsurprisingly to no one, I couldn’t get anywhere close to sleep that night. This made the tally of nights without sleep 3.
I was about to lose it.
Somewhere around 4 AM, after someone had barged into my room to empty the wastebasket, waking me from the lightest of light sleep, I panicked. I’d sent Dave down to the NICU to sit with our daughter in the vain hope that having him at her side would set my mind free.
I was alone. The panic that had been a constant dull buzzing had morphed into something much more sinister and I knew what was about to happen.
Frantically, I paged the nurses station because I knew I needed help. I explained as carefully as I could that I was about to have a panic attack and that I needed my nurse NOW. My nurse came in, I don’t remember what she did, but she didn’t want to call my doctors because they would be rounding in a couple of hours and I could ask for something for my anxiety then.
Fucking bitch.
She told me to “relax” and then left.
I tried to “relax” which was as useful as punching myself in the face with a hammer. It didn’t work. I put a call back into the nurses station, begging; pleading with them to call my doctor. I begged for help.
My last rational thought was to quickly inventory anything in the room with any sort of calming properties. The best I could come up with was a bottle of Scope.
I didn’t end up drinking it, but I did call the NICU and beg Dave to come back up. A nurse passing by my room took pity on me and called my doctor, who prescribed me an Ativan. A swarm of people all happened to come into my room at the same time: a partner in my OB practice who looked terrified by me but discharged me anyway, a nurse with that beautiful pill, a tech to get my vitals, and my husband.
It sounds, in retelling this, that they were all there to help, but it wasn’t really like that. Dave and the nurse were trying to calm me down, but the tech, the doctor and whomever was washing the floor were doing their jobs. With spectacularly bad timing.
Ativan on board now, I was trying to gulp some calming breaths and stave off the panic. They’d turned off the lights, and covered my still-swollen body with fresh sheets, cleaned off the bedside table and turned on the white noise machine.
Finally, I began to relax and beat the panic away, if only slightly. Dave held my hand and told me over and over and over again that my daughter was just fine, she was perfect, she was wonderful, she’d done great overnight, she was beautiful, she was going to be just fine. It was soothing to hear, but what would have been MORE soothing? Having her bassinet next to my bed where it belonged instead of three floors below.
Then (dun, dun, DUN), the absolute worst person to show up did.
Lactation services.
Lactation Services showed up, because they say they’ll come by every day you’re in the hospital with a new baby, and they do. It’s awesome for people who need help because breastfeeding is nowhere NEAR as easy as it looks on those weird Lamaze videos.
(also: why are people in the Lamaze videos always naked?)
But I didn’t need help. And when she showed up and saw me shaking in bed, being held by my husband while the nurse clucked around me like a mother hen, lights off, white noise blaring, she should have excused herself. This is not a debate about breast and bottle feeding, this is about decency. But no, she didn’t get the hint.
No.
She introduced herself perkily and asked me how breastfeeding was going, and through clenched teeth, I answered that it was fine. Kinder than the situation warranted.
I expected this to be enough for her, but no, she followed that up with, “Do you have any concerns about breastfeeding?” Wrong question, dipshit. Time, place, all that.
“You know what?” I snarled, “I’m MUCH MORE concerned that my baby is going to die than if I have proper latch, okay?”
Again, she could have gracefully bid be farewell. But no. She kept on keeping on.
“Well, what about your concerns with BREASTFEEDING?” She asked, just not getting it.
I responded with, “Look, if she’s dead, I’m not going to give a FUCK about colostrum, okay? Please!”
I began to sob heavily again. It was the very real truth that my daughter could die. We all knew it. Nursing her wasn’t going to help an encephalocele.
Dave told her to get the fuck out of our room.
Finally, with a DO NOT DISTURB sign on my door, I slept for a few hours.
I awoke when The Daver bounded in and announced, “the neurosurgeon ordered an MRI! And he’s really nice! And not concerned! He thinks it’s an encephalocele! It’s a piece of brain or something that’s herniated out! We can go home after the MRI! And follow up with the results next week! Oh, I wish you’d met him. He was so, so nice.”
And just like that, we went from critical to discharged in less than 36 hours.
I’ve battled depression since I was a teen. I didn’t know what it was until late into my twenties. I just felt as if something was wrong with me or like I was a bad person.
I’ve been on medication for the last year. It was working. Working really well. My mood had greatly improved. I was no longer hearing a baby cry random times of the day. My anxiety had lessened. But the last couple of months it’s stopped working. I thought I was just in a funk. It happens from time to time. When I’m in a funk, I feel down and I lose all interest in housework, my kids, my husband, and my life in general. The one thing that keeps me going is school. I love going to school. I love doing the homework. It gives me purpose.
I started to feel down this summer.
I don’t have any friends. People say “you must have some friends,” but the truth is: I haven’t had a friend in over 10 years. When I met my husband it was wonderful. He was my friend and that was all I needed. Truthfully, I think I need more friends. I need someone to connect with. Someone to talk to besides him. I hate this feeling of being alone. I know my anxiety keeps me from talking to people and I need to work on it.
I was in therapy the first seven months that I was taking my medication. My counselor thought I was doing wonderfully. I wanted to be doing wonderfully. But the truth is, I was still having anxiety. Anxiety about leaving the house. About meeting new people. About about being a good enough parent or spouse.
I’m back to the dark place. I’m having thoughts of suicide again. Sometimes, I think sometimes everyone would be better off without me. I’ll think of how easy it would be to wreck my car while I’m driving to school so everyone would just think it was an accident.
I know I need to change my meds again. I need to call and set an appointment up. But I have anxiety about that, too. I don’t want to admit I am a failure. That once again I am not okay. And I worry, what if they don’t believe me?What if I am just overreacting?
What if I get in to see the doctor and I don’t have enough courage to say what I’ve said here?
(ed note: why don’t you bring this post in with you if you’re afraid you can’t talk about it? Any doctor will take you seriously.
Much, much love. Please remember that suicide is never, ever the answer. The Dark Place is a place that many of us have been before. There is hope.
If you are seriously considering suicide, this is the phone number for the National Suicide Prevention Hotline:
1-800-273-8255
Please know that you are loved. And you are never alone.)
