Category Archives: parenting

the smell of collard greens and sickness: 38 today

24 Friday Mar 2017

Posted by in kids, marriage, my awesome husband, parenting, PTSD, Sin, Uncategorized

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Today was the kind of day you question this whole having-5-kids thing. It’s my birthday and I’ve spent it tending 3 sick kids and taking another one to the psychiatrist. We’re talking wall to wall puke and diarrhea. Kids whining and crying. Wailing and gnashing of teeth. And always, always, the cry from all directions: Mom!

That said, 38 is a good birthday. The sun is shining. My husband surprised me with some beautiful flowers (even more a surprise because I ran into him at the store as he was buying them-he thought it ruined the whole thing but I found it more of a unique thrill). Granted, the 16 month old knocked the flowers and the 2 quarts of water they were in on the floor, but still. Clean up efforts of the spill were difficult secondary to every single rag in the house being in the wash, dirty or currently used as a puke reservoir. But still.

I spent my 28th birthday in the midst of my five month long trauma. So, Hell. I spent my 28th birthday in Hell. The great thing about trauma is that it makes puke and diarrhea look pretty damn good.

I took my sick babies for a walk in the double stroller today around our neighborhood on the river. I ate Thai food and vegan cheese cake with a very nice raspberry sauce, made by my hubs. I drank some wine and even convinced my teetolaller hubs to join me. My kids all made me cards (ten minutes before the party once forced to by the hubs) that were very sweet. My hubs spent the day, when not reducing raspberry sauce or walking our daughter to the dollar store for more pink balloons, working on the medical practice we are opening. The best present ever.

And  I got one other very important gift: time to write this.  Luxury living at its finest. I do not know how I could have made it to 38 without writing. It was my escape as an outcast Aspergery tween, was my voice against oppression in high school and beyond, won me scholarships and fellowships that made me feel like maybe I really did belong in academia, inspired lyrics that gave me the drive and the confidence to sing in a punk band in front of hundreds of people despite being completely terrified, got me published in a legit medical journal at a time when I struggled with feeling like I was a *real* doctor. Most importantly, writing got me through the weeks and months directly after Jeremy was arrested. Through the second trauma of my medical school shaming me and trying to ruin my career. And it preserved my memories. A true privilege few trauma survivors have.

This blog helped me recover from my PTSD. It helps me still. The core of PTSD is shame. The only way to battle shame is to speak your truth. More specifically, to have someone hear your truth. And not walk away. It is a small little blog with a small group of followers, and I am grateful for each and every one of you. You are a precious gift to me on this my 38th birthday.

It surprises me how I begin to write these entries with a problem and think to myself “Why are you dwelling on this problem with no solution? Cut the pity party.” And I start to write and by the time I am done, I have found an unexpected solution or a new way of looking at it, or have found a path to accepting it as it is. It makes me wonder if anyone can recover from PTSD without creating something. Trauma is the opposite of creation. It is destruction. It is the Fall in the Garden, the closing of the gate. What is it that Eve suffered for the Fall? Pain in childbirth. Pain in creation. But she did not lose the ability to create new life.

There is a certain pain to my writing now that wasn’t there when I was younger. Before my trauma. Before I had my first little boy and was told he was sick at 6 days old (and on the 7th day God rested. I cried the deepest cry I ever have while God rested. He and I are still hashing that one out). Before. But there is still this gift of the ability to create, as God does. And there is a healing in it. And a connection. Maybe not to God so much, but to other people, other survivors–not just of trauma, but all the sad things we live– to time, tradition, cyclical history. And a connection of ideas, of the points of my life, of the people who’ve passed in and out of it. Maybe, just maybe, if I keep writing, it will all make sense. The connections will be drawn, the pattern will show itself. There will be an answer.

I made a big batch of smoky vegan collard greens today for lunch. I made a lovely kale strawberry smoothie for breakfast. I took my medication. I exercised. The day was still utter chaos. I was still pretty damn grumpy for most of it. But I still ate my greens. I did not resolve my ongoing spiritual struggle over the nature of God (he can’t be all loving and  all powerful, so he mustn’t be all powerful so… where the hell does that leave us?)  But I still ate my greens. I was a highly imperfect mother and wife. But I still ate my greens. I was lonely for a lot of reasons. But I still ate my greens.

And so, the house came to smell of sickness and collard greens on this my 38th birthday. But it was 74 and breezy and so we opened the windows and doors and aired the place out. Took the baby out in the yard barefoot. Walked down to the public dock and watched the water. Hung pink streamers and balloons and had a little party. Watched a cheezy terrorist movie starring Morgan Freeman with my husband with the volume down and made up our own dialogue (lip reading did reveal Mr. Freeman called one of the characters “son” as I predicted he would). Spilled some wine on the couch and laughed about it.

We aired the place out because, as I realized shortly before my 29th birthday, I am not in prison. I am alive and I am free. This is not a cell without windows. The sun is not kept from us. And I am not alone. I am eating my greens and cleaning up the messes as they come. The stuff of life. 38 years alive. Booyah.

The World is Coming to an End

27 Sunday Nov 2016

Posted by in kids, love, marriage, my awesome husband, parenting

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My husband is a filmmaker and he made our wedding video. I am blessed like that. He edited it, picked out the music and even hired an animator to make an animated version of the highlights of our relationship. Impressively, he did this while broke and during a really painful separation I had instigated. #MaritalSaint.

We watch it from time to time and we had been meaning to sit and watch it again for the past few months now. Our daughter Lena loves weddings and kept asking when we would watch it. We finally carved out some time to watch it last week. As Lena sat oohing and ahhing over my pretty dress and the “beauuuutyful flowas,” I found myself crying. Which was odd. You see, I am not a crier. I mainly cry when

  1. flooded with pregnancy hormones
  2. when extremely exhausted or
  3. when extremely depressed and heading into a panic attack. When it feels I am falling into the blackness and my world is coming to an end.

I cried several times during the video despite not wanting to do so in front of my sweet, very empathetic Lena. Unlike my boys, she notices any time I am sad or angry. Sometimes she notices before I do. #HighFunctioningAutism. And unlike the boys, I can never lie my way out of it.

I cried as we watched my father give me away and when my nieces walked down the aisle as little flower girls. My wedding was really the last time I saw my sisters and my nieces. I have since then physically seen them a few times, but it was a hollow, awkward exercise. It only served to remind me of what I’d lost.

I watched my two nieces in their pretty little dresses walking down the aisle. The older one was 6 1/2 and the younger one 4 1/2. Smiling and sweet. At the reception the younger one danced with abandon and ran around, often times chased by her father trying to get her to do something. She was quick and evaded capture often. As I watched them, I realized they will forever be caught in this age in my mind. They will never age. Forever sweet, spunky little girls.

I saw them for the first time since the wedding (the first time in 5 years, in 60 months, in 1,825 days) this past summer. 11 1/2 and 9 1/2. They were hard to recognize. They looked so much like their mother now. They looked so grown up. They did not talk to me or my boys.

My boys, especially the Axe, had been asking to see them for five years. He never gave up. He couldn’t understand why he wasn’t allowed. I didn’t understand either and couldn’t figure out how to explain it. I told him, my sister is mad at me and doesn’t want to see us. He asked why she was mad and I said, I don’t know. Because I don’t.

Now, they were strangers.

My sister gave her older daughter my name as her middle name. Because I had helped her through her very long, very difficult, downright heroic labor. It meant a lot to me. An overwhelming lot. I wonder now what she tells her when she asks where her name came from, as I often asked my mother when I was a little girl.

I cried because I will always miss them. Because they will forever be little girls in my mind even as they grow. And that is a very sad thing, to never grow up.

I cried too to see my parents. My father giving me away.

“Who gives this woman to be married?”

” I do.”

But they didn’t really give me away. They couldn’t bring themselves to let me go. They couldn’t stand the thought of letting me grow up. I was forever a little girl to them. *Their* little girl. They could let no one take me away. It did not occur to them I was choosing to go away, that no one was taking me. In their mind, I was theirs and now he was taking me to be his. After all, a little girl is not able to make such decisions.

If they’d let me go, I would have. I really did want to marry my husband and have a home of my own. Every time I’d left my home as an adult I always came back. I went away to college but then transferred to the local school and lived with them. Then I met my first husband and moved away with him and got married. But then I divorced him and again lived with them for four years during medical school. Then I met my forever husband and moved away again. If they’d let me go, I would have stayed with him. But they couldn’t and I didn’t. I left him twice. I left him in a sudden, jarring, couldn’t see it coming way. Twice. And each time returned to them. The first time I physically moved back in with them. The second time, only emotionally so.

And a man shall leave his parents and cleave to his wife. No mention of the wife in that one.

My husband would say to me I was too attached to my family and our marriage wasn’t going to work until I grew up and left the nest and learned to put my kids and marriage first. I kept insisting I had and offered up various bits of evidence to support the patently untrue assertion. He was never convinced.

They had made clear while we were dating they didn’t like him. My sisters broke off with me after the wedding. My parents remained and put up a show of liking him. When I left the first time, it was ay my family’s urging and we sat discussing their true feelings about him. When he and I attempted to reconcile shortly after the separation I kept it a secret as I knew they’d be upset. I was right. When they found out from reading text messages on my phone, my mother kicked me out. Me and my three kids. Me with nowhere to go. I remember calling my oldest sister crying uncontrollably, panicking, terrified. Terrified because I had nowhere to go but mostly because when this side of my mother came out, I felt that black hole feeling. That I was being sucked into the abyss. The world was ending.

Our mothers are the source of life. They are supposed to be the safe womb we can always return to in times of distress. Mine was not. It was in times of distress she was most likely to turn from a seemingly sweet cookie baking, nurturing mom to an ugliness words cannot describe. A cold hate would flow from her and destroy me. My world spinning around me, closing in on me, suffocating me into non-existence.  I would go from being a sacrificial devoted mother in her eyes to a crazy, unfit mother who put men before her children. She would threaten to give my ex-husband money to get a lawyer and take my kids away. Crazy. Unfit mother. Woman who puts men before her children. These were the things I feared most. These were the demons that haunted me. Was she right? Is that who I truly was? That doubt, that possibility, was an endless source of shame deep within me.

You never really knew when she would turn. I grew up in a minefield. Trying so hard not to set her off. And always failing.

I remember going back to my bedroom, the room I had slept in all my life, that I had returned to once again, and calling my husband. Speaking in hushed tones and sobs about my mother kicking me out. He couldn’t understand what I was saying. I was terrified for my mother to hear me so I spoke quietly and ended the call quickly. He had no idea what had happened.

My mother soon summoned me to the living room with an offer. She would not kick me and my babies out on condition that:

  1. I send my two boys to live with their father as she did not have the energy for them. My daughter could remain and she would watch her while I completed residency and
  2. I was to cut off contact with my husband. Any time we met for visitation with our daughter, I was to be chaperoned by my father. They didn’t want my manipulative evil husband sucking me back in. After all, I was just a little girl and easily tricked.

I agreed, so scared. I cut off all contact with my husband without even explaining why. They soon rescinded the demand I send my boys to live with their father, but not the second. We met for visitation with my father awkwardly standing with us. My husband brought me gifts, sweet gifts. A CD he’d made me. Sweet, thoughtful gifts and cards. My family rolled their eyes and laughed. How could he think gifts would make up for what a horrible person he was?

In time, I began communicating with my husband again and we decided again to reconcile. This time, I knew I couldn’t let them find out as we prepared, finding a house to live in and meeting as often as we could (he was living 3 1/2 hours away). My parents rarely left the house, but in August there was a family reunion they would be at for a few hours. In those few short hours we packed up my belongings, disassembled my boy’s bunkbeds and moved all of it out to the new house, an hour away, where I was completing residency. I left them a note saying goodbye.

Their little girl had once again been stolen.

In time, I unpacked the dysfunction of my family in therapy. I began slowly to set boundaries and view my family and my childhood for what it was. I realized there was no emotional intimacy. I realized I had been raised to trust no one but the family. I realized how afraid I had been all these years of my mother disowning me, as she had other people in her life. I realized my mother and I were enmeshed and yet not close at all. Not in the ways that matter.

I left my husband again this past summer just as suddenly, just as secretly, just as heartbreakingly. We reconciled again. And my parents said they were fine with it, but began to punish me in subtle unspoken ways. But still I kept them in my life.

The breaking point came a few months later with the dog incident I have explained in previous posts. I found after I broke with them, my marriage was suddenly so much better. My opinion of my husband so much better, my love for him unconditional. I was not expecting this. I came to see all the subtle ways they had undermined our marriage while, on the surface, appearing to be supporting it. How incredibly cruel. To me and to my kids. Crazy. An unfit mother. Projection.

I no longer have my family in my life and so I cried as I watched my father giving me away in my pretty white dress. They say in Catholicism that we are not waiting for the world to end when Christ comes. The world ends many times in our lives. When we get divorced, get a bad diagnosis, lose a loved on. It ended for me when I found out my son was sick at 6 days old, when a guy I’d been in love with broke my heart, when my medical school tried to ruin my career for turning in a child molester. The world ends but a new one begins. It prepares us for death, they say. For it is in dying that we are born again.

My world has come to an end once again as it has before. But this time I can see clearly the new world that has been created in its place. My children growing up healthier and happier than I, my marriage finally solid, my body and mind stronger than they’ve ever been, my connection to God growing.

They couldn’t give me away and so now I have left of my own will. I am not a little girl. I have grown up.

food is not love ( or: Hail keystone party mix, full of carbs…)

12 Saturday Nov 2016

Posted by in kids, love, parenting

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I’m working a lot of days this week. 6 out of 7 days. Which when you work 12-13 hour days, is a lot. For me and for my kids and husband. #UrgentCareLife.

I needed to prepare for this by making freezer meals for both this hellish week and then the week after since I’d have no time to make *those* meals as I normally would the week before. Because I’m working 6 out of 7 days this week. Did I mention I’m working 6 out of 7 days this week? It’s kind of awful.

I was making a new recipe for the freezer. One I had never attempted before: chicken cacciatore. As it was simmering, I thought of my childhood, of my grandmother’s house. She used to make chicken cacciatore. She wasn’t Italian; she was a farm wife whose people had come from Scotland and England like the people of Appalachia tended to have done. She always cooked from scratch. Three meals a day. No sandwiches for lunch. It was boiled potatoes and pork chops and sliced tomatoes and fruit and… Something was always cooking, the scents hanging in the house when you walked in the door. She wasn’t much into baking so when we would walk the mile down the road to her house on hot summer days to go swimming in her pool, she would bring us Keebler Soft Batch chocolate chip cookies as a snack. Something we did not get at home. Something we absolutely loved.

I thought back on the chicken cacciatore she made as I watched mine coming along. I felt my heart warming to think mine was turning out as well as hers. And then I thought, my Grandma never seemed to love me. I mean, I’m just being brutally honest here. It sounds awful, but I come from a dysfunctional family where I just had no emotionally intimate connection with anyone. It astounded me when I grew up and found out how other people felt about their grandparents, the close bond they shared. Not so with me and mine. I had just assumed that’s what a grandchild-grandparent relationship was *supposed* to be like. Turns out I was wrong.

So, why was the chicken and peppers boiling away in our cast iron skillet making me feel all soft and gooey?

I thought back on my grandmother’s chicken cacciatore and my mother’s snickerdoodle cookies. The peanut butter bread my mother made for us with raisins that made a smiley mouth and two mini marshmallows for eyes. The trips to McDonalds with my mom when my sisters were at school, just me and her. I told myself that food was her way of showing love. But it wasn’t. It was the desperate attempt of a little girl to believe her mother loved her in a way she definitely did not. Children are completely dependent on their parents for their very lives. They have to believe in them, in their love. And so I found a way.

What I didn’t realize until that moment in the kitchen next to the hot stove with the chicken cacciatore wafting into my pores, is that it wasn’t love at all. It was just food. And for all these 37 years I’ve been alive, I have comforted myself with food because, to me, it is love. Not a symbol of love, not a sign. It is literally love. When you’re upset, you should be able to go to your mother to be comforted. I never could. But I could eat chocolate. I could pour my sadness out to Little Debbie cakes and my anger into Doritos.

If your parents don’t comfort you when you’re young, you never learn to comfort yourself. Not in a healthy way, anyway.

For me, food has been my answer to sadness, worry, uncertainty, joy, anger, boredom, frustration. It’s been my self care and entertainment. It has been my secret, my rebellion, my hiding place, my distraction.

I remember being 10 years old in 4th grade and we had to all cross the road to the YMCA and take swimming lessons. I felt horrible about my body. I thought my thighs were just massive. I couldn’t stand the thought of being seen in a bathing suit. I’d never been made fun of. But the idea was there because of what I heard discussed at home as well as the messages we get in our culture. I began looking for excuses not to participate. I would forget my clothes on purpose. Say I wasn’t feeling well.

There was a vending machine at the Y that we were forbidden to use (this is in the days before there were vending machines in schools). I used to try to be the first one out of the locker room after class so I could quickly deposit my quarters to get a snack size bag of Keystone Party Mix. A compilation of pretzels, cheese covered tortilla chips, barbecue corn chips and cheese doodles. I would hide it away in my bag and save it for later. I would take it back to my bedroom and eat it in secret.

My parents found out I was missing swimming class and sat me down and asked me why. Was someone picking on me? No, I answered honestly. But I knew I couldn’t tell them why I was really skipping class. An unwritten, unspoken rule of the family. Don’t have negative emotions. Don’t expose your vulnerability or they will pounce. Everything. Is. Fine. And so I said what I was supposed to. Made up some unbelievable excuse which they readily believed. Everything. Is. Fine. After all.

My Keystone Party Mix comforted me. My Keystone Party Mix was the secret I kept from them. It was mine and mine alone. A protective wall. The more they know about you, the more they will hurt you. Reveal as little as possible. Protect yourself.

Hail Keystone Party Mix, full of carbs, … protect us, Mother.

That was the beginning of it. This is the end.

I know I deserve more now. I deserve love. And food is not love. I am finally able to eat healthily and be happy. I am able to comfort myself without turning to cake. I can get angry with my husband and not stop off at McDonald’s on my way to work for a Sausage McMuffin. I can make it through a boring, frustrating day at work without noshing on candy all day. I can stop after a handful of chips or a single brownie, because I am not empty and searching. I hope I am giving this to my children too. The ability to sit with the hardships of life, to turn to people who love and support them, to know they’re worth more.

I do cook for my family because I love them. I work urgent care for them and clean for them and kiss boo boos too. But I do not offer food as a substitute for love and compassion, emotional validation and open, safe, discussions. Sometimes our family *isn’t* fine. Sometimes we’re a wreck. No, like, a flaming tire fire kind of wreck. And that’s okay. It’s life. It is what it is. We all have permission to feel whatever it is we’re feeling at that moment. We’re allowed to have boundaries. I hope they like my cooking and the birthday cakes I make them, but I hope that’s the least of what I mean to them. They deserve more.

 

Better Living Through Science

21 Wednesday Jan 2015

Posted by in autism, doctors, empathy, kids, medicine, parenting, Sin, special needs

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I’ll admit I spend a good amount of time on Facebook. I like to see what politcal/social justice type things my friends from college are up to. I like to post pictures of my kids for distant friends to see. Sometimes I’ll take one of those quizzes: Which Golden Girl are you? (I got Rose, in case you’re wondering. I was really hoping for Dorothy but I guess I haven’t matured to her level of sass and pith quite yet). One thing that dominates my feed is posting from my fellow doctors and nurses bashing parents who don’t vaccinate their kids. And yes, I mean bashing. I don’t mean expressing concern for their children. I don’t mean seeking to find ways to turn the tide of increasing numbers of people not vaccinating their kids. I mean, bitching about them and how they’re screwing up herd immunity for the rest of us because they are bad people who ignore science.

I have issues with this.

Ironically, these people of science are not being scientific at all. The whole argument is that these crazed non-vaccinators are ignoring science. They’re irrational. They’re backwards. They’re stupid. They’re ignorant. The problem with this argument is that the accusers here are ignoring the fact that *they* themselves are not being scientific. Let’s look at the facts:

-By and large, non-vaccinating parents are highly educated with average to above average intelligence. That’s what the research shows us. Most of them have read everything their doctors have read and come to the decision that it’s not compelling evidence to them for one reason or another. So, calling them stupid or irrational simply isn’t accurate.

-Most parents who do not initially vaccinate will vaccinate their children within a few years. The vast majority of patients questioning vaccination cite their doctor as their most trusted source of information. But here’s the rub: the research shows that if their doctor comes at them with the attitude most doctors hold, these parents actually become *more* likey to not vaccinate. What has been shown to work, scientifically, is for physicians to engage in respectful, open minded dialogue with them and not engage in scare tactics etc.

We have an obligation as physcians to pediatric patients of these parents and also to the greater community and society. We’re tossing aside evidence based medicine and compromising both with our attitudes towards these parents.

Why? Basically because this topic makes most doctors really really mad. And we allow really really mad to get in the way of our obligation to these kids. We find it emotionally comfortable to get angry and make it into a moral failing in these parents. Some of it is righteous anger in defense of community health. Some of it is control issues. We don’t like it when patients don’t do what we say. We got into medicine to help people and now they’re not letting us help them. Maybe it makes us sad to see them hurting themselves. Maybe it pisses us off they’re messing up our plan.

I was discussing a law recently with some fellow residents that I read about going into effect recently in a southern state. They were starting to arrest mothers who did illegal drugs while pregnant once the babies were born. Two of us thought it was a terrible law because addiction is a disease and criminalizaing it really wasn’t the answer. Putting a baby’s mother in jail soon after birth is incredibly obviously not good for a baby. Knowing she’ll go to jail if she delivers her addicted baby in the hospital will inevitably lead to some of these mothers delivering their babies at home and not getting proper medical care. They’re certainly going to be more likely to lie to their physicians about what drugs they’ve been doing. The resident in favor of the law was adament that these women must be punished. They’ve harmed their child and they must be punished. The fact that this law was only going to hurt these babies further was not the issue here. Addiction was not a disease, it was a moral failing.

The truth of it is, it is simply easier and more satisfying to write these non-vaccinating parents off as kooks and lost causes. But if you truly believe not vaccinating their children (your patient) puts them at risk, you have a moral obligation to not write them off as a lost cause. You are that child’s advocate. You are a physician practicing evidence based medicine. So act like it.

Parents who are simply questioning vaccinating may or may not know much about it. So, guage how much they know and offer them education in a respectful way. Talk when appropriate and listen when appropriate. Don’t engage in scare tactics. Show them some compassion. This will maximize the chances they will vaccinate today or soon therafter. In case we’re not clear on this: making them sign a release recognizing they’re placing their child’s life at risk by not vaccinating is not productive in this regard.

Some parents are at the point where they are refusing to vaccinate and have probably read up on a lot of what you have to tell them about vaccine safety and efficacy. If you can tell they’re already familiar with the information you have to offer, it’s time for you to sit and listen. Ask them why they don’t want to vaccinate and listen respectfully and compassionately. If they’re open to your responding, then go ahead and respond. If they’re not, then thank them for sharing with you and let them know you truly believe vaccination is the best thing for their child and that you hope the dialogue can be kept open at future visits.

If the above approach chafes your chaps, if it seems just plain wrong, that’s a perfectly valid feeling you’re having; but it certainly isn’t scientific.

Instead of reading self-congratulary after self-congratulatory article on how awful these non-vaccinators are, you’d be better served to read up on why parents make that choice. Better yet, try talking to a few of them. As a mom of a child with autism, I can tell you there are plenty of parents in that community who would be more than willing to talk to you about it. Step back from the moralistc thinking and consider all the psychological and social reasons parents might have to make this socially unpopular choice. What life experiences have they had that have led them down this path?

One thing I try to stress to my interns starting out in residency is that there’s a place for book knowledge but most of what you need to know about being a good doctor comes from experience. Your experience as you go along and learning from the experiences of the doctors teaching you who’ve been at it so much longer than you. If you’ve seen a child suffering from a vaccine preventable disease, you’re most likely eager to share that with your patients. But, you’re better off trying to find out about their experiences affecting this decision. Scientifically speaking.

One common misconception amongst the American public that upsets physicians is the idea that vaccines cause autism. How can so many people believe this stil?! It’s been scientifically disproven! Heck, it’s even been anecdotally disproven in the case of thimerosol. Let’s get rid of the exclamation points and ask that question for real. Why is it that people still believe all vaccines or MMR or vaccines containing thimerosol cause autism? Is it all due to that villain Dr. Wakefiled who published that now discredited study in the Lancet? Has he mesmerized these foolish parents? Or could there be a more logical explanation. Perhaps one explained by medicine?

Let’s set aside the vaccine facts for a minute here and consider some facts that are at the core of every family’s life who has a child on the autism spectrum:

1. Doctors do not know what causes autism
2. They’re pretty sure it’s a genetic predisposition that gets triggered but they don’t know what’s triggering it
3. But they’re pretty sure it must be mulptiple things because they can’t really find any one thing these kids have in common
4. Doctors have no cure for autism
5. Doctors don’t even have a very good treatment for it
6. Most PCP’s don’t know nearly as much about autism as an informed parent. As PCP’s, we’re generalists and it’s not something stressed in med school
7. The rate of autism keeps climbing and the truth of it is, scientifically speaking, we don’t really know why

Can you honestly tell me a parent in this situation would be irrational to question things that are dogma to modern medicine such as vaccines? Modern medicine has failed them. What they need from you is not a lecture or an anecdote of what can happen to unvaccinated kids. Assurance of the rarity of adverse events from vaccines (and yes, there are rare but quite serious effects at times) will not comfort them. They need their trust in medicine restored. And that begins with you, the PCP. I say begins because it is a process that can’t be rushed. You have to sit with them, sit with the uncertainty and anger and helplessness that comes with special needs parenting. You need to show them their child is your patient who you care about. That you see the challenges and the joys of their life. To show them that this isn’t about a battle for control. That you want what’s best for their child. And that you’re open to learning from them. That it really is a dialogue and not a lecture.

Only 1% of parents in Pennsylvania choose not to vaccinate their child, but the lessons we can learn from this issue will make us better doctors in a lot of ways. And better people for that matter.

Listen. Empathize. Validate. Assert. Repeat.

I often tell my kids: it’s okay to get angry. It’s not bad to feel angry. But when we get angry, we have to make good choices of what to do with that anger. I think we could all stand to hear that on a regular basis. So, my fellow physicians: it’s okay to get angry about vaccination. It’s not bad to feel angry. But you need to make good choices.

You’re a physician practicing evidence based medicine. So act like it.

New Year New You! (How Ima Got Her Groove Back)

10 Saturday Jan 2015

Posted by in empathy, kids, love, medicine, my awesome husband, parenting, PTSD, Rape

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I found this idea on Pinterest for keeping a jar where you write down happy/funny things that happen throughout the year and put them in this jar. I believe it advised a big jar (with the assumption being you’ll have lots of good things happening I suppose). You open the jar up at the end of the year and read over all the little happy moments you otherwise might have forgotten. The woman who’d pinned it had written it was a “super cute idea !!!!” and that she was definitely going to try it.

I pitched the idea to Poobah and he liked it (although he didn’t call it super cute or exclaim). So I took the large clear plastic teddy bear shaped animal cracker jar and dumped the animal crackers out into a bag (they’ve been sitting uneaten in the jar for 3 months so why not keep them uneaten in a different container a little longer) and wrote 2015 on the bear’s tummy with a Sharpy.

As I did so, I thought, why only write down the happy times? Why not the bad times too? It was January first and I was heading to work soon. I wasn’t very cheery.

But it wasn’t just working on a holiday that made me think that. I’d been bogged down in PTSD and working crazy hours and stress and financial problems and family discord. Bogged down for a while.

I felt like there wouldn’t be much to put in the jar.

I said goodbye to my husband and kids and headed to the hospital. Holidays can be slow because people put off going to the hospital on a holiday if they can, but it’s been a particularly busy year for hospital medicine because of all the influenza. I expected I’d be fairly busy and hoped it wouldn’t be any worse than that. I hoped no patients crashed. I hoped for some time to think.

Earlier in the day, Poobah and the kids and I had gathered in the living room around our old school fake Christmas tree (the kind that really do look fake and aren’t “pre-lit” and don’t have green concentrated pine scent aroma sticks discretely hung on a strategically chosen back branch) to continue a tradition my sister Nicci and I had started when I was still in high school. Every New Years we make predictions for the upcoming year and then the following year we read over them and see who got the most right. We also talk about things that happened over the past year that were unexpected.

We’d each made three predictions but I wanted some time before I went and started the admissions to write down a few more and think about the year ahead.

I started writing and this is what came out:
I need to move forward. But these next 6 months are going to be exhausting. I’m not sure what to do. I wish it were a simpler tale. I wish I could figure it out.
Where did it begin? Before I was born? If it did, then what?

We all seek to be an individual with self-esteem
There are those who stand in the way
And so we assert to be ourselves in maladaptive ways
Because of the innate drive towards maturity

Malcolm has something special in him. Malcolm could change the world.
He said he wants to be an astronaut so he can change the world.

Mies has this amazingly unique combination of traits.

They’re extraordinary.

Maybe I am too.

And with those four little words, I got my groove back. I didn’t just get my groove back from before Jeremy Noyes traumatized me seven years ago or before my medical school rubbed salt in the spiritual wound and made it stick. I mean I got my groove back from Way back.

It’s a process, of course, but it is set in motion. It is inevitable. The rate limiting step of the reaction has been overcome and the chemical cascade is in full swing.

I’ve spent most of my precious little free time since then wading through shame and heartache, cleaning out every dark corner of the past 35 years. It’s amazing all the things I’ve been ashamed of over the years. It’s amazing how ashamed I still felt now, decades later, simply writing out the words different people have said to me. I’ve done that sort of thing before, sitting and trying to process bad memories. But the difference this time is that I finally believed that I didn’t deserve any of it. I finally believed I’m extraordinary and so deserving of love and safety and joy, it’s ridiculous.

The words lost their power over me. Those people lost their power over me.

There are things I’ve done in my life I’m ashamed of and I sat with those too. Some of them I reminded myself I had no control over (feeling ashamed I “let” myself be raped, for instance), some I decided are just inevitable mistakes of youth, and some I had to forgive myself for. I regret very little as a general rule, but the things I’ve done that have hurt people, really hurt them, I do regret, and I had to forgive myself and let go of the shame.

Another inevitable piece of it is that I am losing the extra weight I have clung to for many years. It’s time to let it go and so I am. I feel hungry but it doesn’t distress me because it’s what’s supposed to be.

I’ve recovered from political amnesia and am reading feminists and progressives and anarachists again. I’m engaging with people about things that matter. I’m throwing a hundred evolving ideas out to my husband on everything our future holds after we graduate this June.

It’s not that I’m becoming a whole new person. It’s that I’m returning to being myself. I’m doing what we are all made to do: becoming more myself and finding what it is I am supposed to be doing to make the world a better place.

I look at my two year old daughter and see she’s there. She’s got her groove on. She knows what she thinks and wants and feels and she lets you know it. She’s engaged with everything and everyone she comes in contact with. She’s alive. She’s in the flow.

I want to do everything I can to keep her there as much as possible. I want to help all my kids find their flow. And anyone else I can. Because that’s what life is. But I see now, it’s not selfish to enjoy having my own groove on. Quite the opposite. Flow begets flow.

And so, the other day, I took a little green slip of paper next to the empty animal cracker jar and I wrote the first memory of 2015: January 1st Ima got her groove back. (our kids call me Ima. I’ll tell you about it some time)

This is for my husband now: My name is Elizabeth Spaar and 2015 is the year I got my groove back

The surprising mathematics of shame

05 Monday Jan 2015

Posted by in christianity, empathy, kids, love, medicine, parenting, PTSD, Rape

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I came home from working a 24 hour shift and thought, I should relax and watch something funny before I head for my nap. I have a tendency not to follow through on such intentions very well. I tend to wind up watching a documentary about something heavy instead. My therapist Dr. O said my main hobby in life seems to be thinking and that has its benefits and its drawbacks. One of the drawbacks being my insomnia largely caused by my unending pondering. So I knew logically that I really should put on something lighthearted to unwind and then go take my nap, but logic rarely dictates what we do in this world and I am no exception.

In my defense, I did go to the Search area of Netflix and begin to type in “Sex and the City.” I can’t be blamed for Netflix suggesting I might enjoy the TED talks on the topic of sex and love.

The first talk was “eh.” It was about parenting taboos I didn’t exactly find earth shaking. Maybe because I entered parenting via the special needs route. I was doing calculus when the parents giving the talk were still learning to count. Not to say their talk didn’t have value. Sesame Street has a lot of value, for instance. But I digress….

The second talk was different. It was by Brene’ Brown, a PhD in social work, and it was titled “The Power of Vulnerability.” She talked about the most basic human need being connection. She said it was the meaning of life. She talked about the thing that keeps us from it too: shame.

She described shame as the fear of being disconnected. Our fear that if people really knew us, they would reject us.

She said something else too: the less you talk about shame, the more you have.

She said the key to happiness in life was vulnerability. Being willing to sit with uncertainty, taking risks worth taking.

She said that the difference between people who feel loved and connected in this life and those who don’t is whether or not you feel worthy of being loved and connected.

She said we numb vulnerability with food and buying stuff and drinking and medication but when we do, we also numb joy and happiness and make ourselves more and more miserable.

She said more in 15 minutes that is worthwhile than I learned in four years of medical school. My husband says I’m exagerating a bit when I say that. I’m prone to exageration, so I guess I’ll rephrase: what she said launched an epiphany for me that will make me a better doctor and a better person.

You see, PTSD is about disconnection and not being able to be vulnerable and numbing and shame. And shame. I’ve been trying to figure a way out of the disconnection and numbing and avoiding vulnerability piece. It didn’t occur to me that the key could be shame. And it didn’t occur to me there might be a simple mathematical solution:

Talk about the shame –> less shame

I always thought it was the other way around. Maybe that’s why therapy hasn’t done a lot for me over the years. Maybe.

So I’m on a mission to talk about my shame. Every last bit of it. Everyone has it except for psychopaths, so there’s no shame in admitting you feel ashamed.

I had a grrl band when I was in college called Dum(b). Don’t ask about the parentheses. I named the band Dumb because we were a grrl band giving voice to women’s and girls voices (dumb used to mean mute in addition to meaning stupid FYI). I used to be an oral historian trying to give voice to marginalized people (thank you Howard Zinn, God rest his soul). But it’s time to look at myself now.

I need to talk about the things I’ve kept silent so long. The things I have tried to stuff down with food, to forget in the rush of infatuation, have tried to bury under a pile of things bought with credit cards. The things that have kept me from being fully present, that have made me afraid to be vulnerable.

These things that keep you from being alive. The opposite of life.

When I look at my children it is so easy to see that they are extraordinary just as they are. So easy to know in my bones they don’t deserve to feel shame. What I have come to realize is that I need to feel that way about myself.

I have spent the past seven years surviving. Surviving for them, because I had to. But survival isn’t life. It’s a holding pattern. I need to live and not just for them. I need to be fully alive again for me too. Because I deserve to be alive and joyful and self-confident and full of plans and hope and possibility.

Possibilty. It’s been so long since life seemed to hold real possibility.

I went to sleep for a few hours last night during a lull in admissions for the first time in so long. I prayed and thanked God for what the Holy Spirit has revealed to me through a TED talk. And then I stopped thinking and went to sleep. Because I deserve it.

But still it falls

30 Tuesday Dec 2014

Posted by in parenting, PTSD

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I haven’t written an entry in a while. I was reading a lot on PTSD–very specifically, testimonies of people who recovered from PTSD– and realized I’m not who I used to be seven years ago. And when I write, it is not really me writing so much as it is my disease. This disease which has infected my body and mind and heart and soul. This disease which has taken away the best of me and hidden it deep beneath its darkness and claws. And why would I want to give this awful disease a blog.

A lot happens in seven years, in any seven years of any given person. And my seven years are no exception. And I have told myself it is these things, these hundreds other things that come into our lives in any seven year period, that have changed me. Not the one thing that has. But it is not these things; it is *the* thing. That one thing. The ordeal, I call it. My trauma.

My husband is getting his house ready to sell, the house he’s had since his son was a baby. And he tells me about the boxes of old cards and letters and pictures he goes through as he packs up a decade and a half of memories. I don’t save those things, I tell him. That’s odd, he comments. I don’t save the boys drawings either, I remind him. (He’s the one who does) You’re right, he says.

They could be gone. Gone at any moment. You shouldn’t get so attached. But I’m not talking about the drawings and letters. I’m talking about my boys. My boys that perp said he’d kill. My boys I thought he’d kill. My boys I placed in God’s hands that day I called the FBI to turn him in.

They were so small. Soldier boy had just turned four. The Ax was two and a half. They still took bottles to bed at night and wore diapers.

I gave them over to God and turned him in because they deserved a mother who does the right thing. Because I had a choice: body or soul. But that’s really not much of a choice, now is it.

Princess is two and change and so was The Ax when the ordeal started. I remember taking them sled riding when it snowed early that winter. It was a snowy winter. It was a snowy lake town we lived in then. I remember riding down the little hill in front of our house and giggling.

I remember the possibility. Life held so much possibility.

Right after the ordeal, right after he went to jail, I spent my weekends going door-to-door campaigning for Obama in rural western Pennsylvania (Pennsyltucky). I walked up and down the streets of Saltsburg getting out the vote. The audacity of hope and all that.

When Soldier boy was born sick, I formed the Pittsburgh chapter of MOB ( mothers opposing Bush) and spent the fall going door to door with him strapped on my back. Little old ladies saying I should be ashamed to have a baby out in the cold and the rain. I thought they didn’t get that what I was doing, what I was giving him, was so much more important than keeping warm and dry at any cost.

But the election of 2012 came and went and I barely noticed. For the first time in my adult life, I didn’t care about the election. Not even a little.

My therapist asks me how I did when my husband went out of town this week and I tell her it was like it usually is. She asks what I did to try to raise my spirits and I tell her I was up late making buckeye balls for the cookie exchange at work and put on old Obama speeches from 2008 on YouTube to listen to to try to perk myself up. She tells me this is not a normal thing, not a typical way a person tries to cheer themselves up. And I remember going door to door after the trauma and I tell her. And I remember going door to door after Soldier boy and I tell her.

There was hope then, right after the ordeal. But somehow it has drained out of me since then. These seven years. I do what must be done. Because it must. I go through all the appropriate motions. Day in and day out. But… The world is infinitely smaller now. Duller too. Flatter. It’s kind of like a book you don’t bother finishing because you can guess the ending.

But therein lies the rub. One of the things I must do is give my kids the life they deserve. I cannot teach them the world is small and flat and dull. Because it’s not and part of me knows that in some small way.

When I was in the midst of my ordeal I found myself in an impossible situation. I told myself, for our children we make the impossible possible. And somehow I got through it and put the bad guy in jail. Now I’m in an impossible situation of another kind.

I am not the same person I was seven years ago and neither are my boys. The snow’s not the same either. But still it falls.

Of Santa Claus and Mama Lions

28 Friday Nov 2014

Posted by in empathy, Evil, kids, love, outrage, parenting, Rape, Sin

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My husband recently informed me my nine year old son no longer believes in Santa. My ten year old with autism still believes. He told me he wants an English policeman costume for Christmas. When I told him that might hard for me to find, he said, don’t worry because Santa can make anything. He said Santa would make it because he doesn’t really believe in elves anymore. I said, so just Santa? He said, well Mrs. Clause too. Obviously. It would be lonely at that cold North Pole without someone to come home to.

My husband and my ex-husband as well don’t really agree with the Santa thing. You shouldn’t lie to your kids, they say. How could they ever trust you once they find out the truth. You lied, you lied! All those years, all those lies! I’ve gotta admit, when they say that my first thought is just, WTF? Are you serious? Then I calm down and formulate a more helpful defense. It’s a little moment of magic we give them for a few years. It’s what childhood is supposed to be. They have the rest of their lives to come to terms with reality. Give them a little piece of magic before the, lets be honest, rather brutal process of growing up begins. They will come across so many lies in their lives told for unkind ends. If we can tell a few to make the brief flash of true childhood a little more magical, I say, do it. I say, it’s not fair for us to impose the world as we see it on them.

There is a truth to Santa. He may not be a man, but he’s the personification of all we feel and hope for them. He is what childhood is. And I hope that’s what we want for them.

I’ve come to realize that protecting childhood is more important to me than almost anything in this world. I don’t mean spoiling kids, I don’t mean coddling them. I mean keeping them safe, giving them room to be themselves, fostering their confidence. When they are young, giving them a time of sweet oblivion from the way of the world. As they get older, leading them into the world as gently and meaningfully as we can. Cradling the fragility of what is true about that childhood innocence intact into the fallen world so they can thrive despite it all and hopefully do some good along the way.

As important as all of this is to me, there is an accompanying … frustration. Yes, we’ll say frustration. We’ll be diplomatic. A frustration with adults who derail this in the less obvious ways. Obviously, there are those who deny kids safety, whether it be sexual, physical, emotional, spiritual. There are those who are not strong enough to let them be themselves. Those who allow their own wounds to keep them from letting them know how wonderfully made they truly are. And frustration is not the word I use for these adults. They are what’s wrong with this world. They are original sin.

The ones I am frustrated with are not the wounded, the evil, the weak. They’re the ones who never really became adults themselves. The ones who do not know the evil this world holds, the suffering, the injustice, the unfairness. Does that sound mean? Bitter? Pessimistic? If so, you may be one of these adults yourself. Before you get all defensive, let’s look at the facts:

1 in 4 girls will be sexually molested in some way
1 in 3 women will be sexually victimized in some way in her life
1 in 4 women will be raped in her lifetime (rape being specifically vaginal or anal penetration)
1 in 6 boys will be sexually molested in some way
That’s in the U.S.

22,000 children die from poverty a day worldwide
28% of children in developing countries are underweight or growth stunted

So, yes, the obliviously priveleged adults of this world frustrate me. They’re safe and warm in their cocoons and the children of the world are outside left on their own. They ignore the safety so many children are denied. They cannot prepare any of the children to make that transition from the innocence of early childhood to the world of trouble and sin we live in. They need to get their asses out here and get to work.

There is a lot of work to do.

I am, above all, a mama lion. For my children and for all the others. Children need milk and play, to learn to fend. They also need a mama willing to rip out the intestines of those who threaten.

Man up, people. Be the mamas they need.

How Natural Childbirth Made Me a Better Special Needs Parent (and a better person in general)

04 Wednesday Jun 2014

Posted by in autism, parenting, special needs

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I decided to do natural childbirth when I was pregnant with my first child back in 2004. It seemed like a no-brainer at the time. Epidurals led to more interventions in labor including c-sections. There was research out at the time showing that the use of epidurals in combination with pitocin in labor might be triggering genes for autism in newborns. Women had been giving birth naturally for hundreds of thousands of years so surely I could too. I read up on the Bradley method and devoured all of midwife Ina May Gaskin’s books. My son’s father and I attended all the classes and developed our birth plan which we shared with our L&D nurses as soon as we arrived at the hospital.

My nurses were less than supportive, offering me an epidural every time they came in to ask me to rate my pain on a scale of zero to ten (I have since then had two more babies with absolutely wonderful nurses, so please don’t take this as a generalization). My obstetrician had instructed the nurses to start me on pitocin over the phone. He was driving home from his call shift early and decided to go with the nurse’s exam instead of coming in himself. I was already in labor but my water had broken several hours earlier and they wanted to reduce my risk of infection by getting my baby out as soon as possible.

I’d wanted to avoid pitocin but there wasn’t much I could say, especially since the ordering physician wasn’t even there. Cross that one off the birth plan. My son’s father and I decided to make the best of it. I wasn’t allowed out of bed because they said intermittent fetal monitoring wasn’t allowed since I was on pitocin (although they did allow me to do intermittent monitoring with the labor of my second child when I was using midwives, so either it was my OB’s policy or a lie of some sort). I moved position within bed as much as I could to promote my son’s descent into my pelvis. Every time I did, Nurse Ratchet would come in all in a huff and readjust my belt monitors gruffly.

And so it went. I delivered my beautiful son naturally and a bit angrily that night shortly before midnight. He came after just three rounds of pushing with the umbilical cord wrapped around his neck three times. There was an ER resident there and I think she might have been the one to actually deliver him, but I wasn’t all that concerned with the details at the time. The hands catching him counted as a detail. They laid his wet little body on my chest and I looked down at him and thought how small he was, and how much a stranger. I’d been talking to him and bonding with him so strongly over the past 9 months in my belly, and now here he was. He didn’t look like the cherubim of a baby I’d imagined him to be all those months. It was a little disorienting. Like talking to someone over email for nine months and then meeting them in person.

I quickly got over these feelings, though, and looked at what a beautiful, perfect little person my son was. We couldn’t believe how complete and detailed he was: he had little fingernails! Little eyebrows! He was so amazing. I loved him so much, in a way I’d never loved before.

We took him home shortly after. He checked out well by the pediatricians at the hospital and then by our pediatrician in the office. He was losing a bit too much weight because he didn’t breastfeed real well, but otherwise things were fine. Then came the moment that divided Before from After. The moment our lives changed forever.

It was Sunday June 13th. My baby was five days old. I was in the nursery when the phone rang. I left the baby with his dad and went to answer it. I expected it to be my mom calling to check up on us. It wasn’t. It was my son’s pediatrician. My stomach sunk. My heart began to beat a little heavier in my chest. Doctors do not call on Sunday afternoons with good news. They do not pull themselves from after-church lunches and pick-up basketball games with their teenaged sons to call and check how your newborn is doing. They only call when it’s bad.

He began asking if my baby was throwing up, had diarrhea, was overly fussy, and a whole lot of other questions. I told him no to all of them. My son was fine. Not the best nurser in the world, but fine. He told me that they’d drawn some blood at the hospital that they do on all the babies to screen for certain conditions and my son’s had shown he had something called galactosemia. Galacto-what-ia? He gave me a brief rundown. It was a metabolic disorder where eating certain things, like dairy, hurt him. I needed to stop breastfeeding immediately and put him on soy formula. But what about the benefits of breastfeeding, I asked him. He said I absolutely needed to stop feeding my son milk now. I could pump the breast milk and freeze it for now until all the confirmatory tests came back. I was to take him to see the medical genetics physician first thing in the morning. A specialist seeing us first thing in the morning on less than a day’s notice? This could not be good. This had to be very bad.

When we went to see the specialist the next day, they caught something on their exam the other doctors hadn’t. My son had a small head. It had nothing to do with the galactosemia. This was another medical problem altogether. Over the next year months he received more diagnoses. All of them seemingly unrelated. His first developmental delay manifested itself at twelve months. The autism diagnosis didn’t come until he was four. We didn’t know the extent of the visual issues (he is legally blind) for sure until he was five.

I’m not sure which of his many diagnoses was the toughest to find out about. You would think it might be the first one, or the one that would most affect his life, the most disabling one. But I think the hardest ones were the ones that came just after those first two we found out about that day at medical genetics. It seemed like every time I took him to the doctor, he got a new diagnosis. All these doctors talking about all these things wrong with my baby. Couldn’t they see he was perfect? It was an unrelenting, seemingly never ending process. It wore me down.

After the shock and the drama of the initial diagnosis came the day-to-day work of raising a special needs child. Doctor appointments, regular blood work, therapy sessions (physical therapy, occupational therapy, speech therapy, vision therapy….), IEP meetings, finding adaptive material, figuring out how to get him toys that clearly say they’re for much younger kids on the box without upsetting him. And then there’s the emotional work of coming up with new dreams, reigning in the worry of potential challenges yet to come, and accepting and embracing your unexpected life (over and over again).

I have handled these challenges with grace at times, and other times, not so much. But I have weathered the storm thus far, ten years in, and I can tell you there are certain things I went through before it all began that have helped me through the bad times and helped me to enjoy the good times even more. One of those experiences was his entry into this world pain medicine free.

One of the things I learned heading into my natural labor was to think of the contractions as ocean waves. I shouldn’t resist them, shouldn’t tense up and fight them. I should relax my body and let them wash over me. Easier said than done. I know there are those who’d disagree, but for me, contractions are damn painful. I know intellectually it’s the body’s way of opening up the cervix so your baby can come out, but it feels like I’m in a vice grip. Relaxing and accepting the worst pain of your life is not necessarily a natural response. What can make it even harder, is laboring in an environment where people are constantly offering you pain medications and telling you you’re better off with them. One analogy people offer is that if you were shot, you’d use pain medication, so why go through pain for childbirth when there are readily available pain medications? My thought on that one has always been: because getting shot and bringing a baby into the world are really just so similar? No major differences there at all.

Natural childbirth prepared me for the journey of special needs parenting in several ways. Listed in no particular order:

1.It Made Me a Little Fearless
Natural childbirth was the hardest thing I’d ever done up to that point in my life. It was physically and psychologically demanding. I was more tired than I’d ever been afterward. They say that’s why they call it labor, because it’s hard work. Corny but true. Our culture isn’t supportive of natural childbirth and an awful lot of OB’s aren’t either. Just making the decision to do it can require some fearlessness in itself. Having to stick with that decision with people resisting it while you’re laboring, being stretched to your physical and psychological limits, is pretty hardcore (I say this as a doctor whose watched laboring women do this, not as a toot-my-own-horn statement). You need to be a little fearless when you’re rasing a special needs child too. The fear of your unknown future, of doctors you must stand up to at times. You have to set the fear aside for you child, so you do.

2.It Helped Me to Learn to Accept
Coming to terms with your child having special needs is a grieving process, and one that doesn’t stop after the initial stages you go through with diagnosis pass. You continue to grieve as the years go on, with all the day-to-day challenges of each new stage of your child’s development (and your own). What is essential in this process is acceptance. You have to accept your situation before you can begin to process it and do what needs to be done to make the best life for your child and the rest of your family. Fighting it is as useless as fighting labor pains. The best thing to do is force yourself to relax and accept it. I know forcing yourself to relax sounds counter-intuitive, but faced with the pain of those contractions, I learned how to do it pretty quickly.

3.It Showed Me I Could Do Anything When it was for My Child
I remember clearly holding my week old newborn son as I sat in the nursery glider and crying, begging God not to take him from me. At that point, my son’s doctors thought he might have a chromosomal disorder but they wouldn’t say which one. I began looking up chromosomal disorders on the internet (I wasn’t a doctor yet so I took to Google) and found several of them that carried an average life expectancy of two or three years. I was terrified he might die young, so I bargained with God. If you let him live, God, I will do anything. I will walk through hell for him. I will go through the pain of childbirth for eternity, if you will just spare him. And I meant it. Since then, when I go through something difficult, something really difficult, something I feel like I simply cannot do because it seems genuinely impossible, I think of that moment. I think of that promise. It’s ten years later and he’s still here. I owe him my all, even the impossible at times. Knowing I got through something as hard as labor for him, and that I was willing to do it again, keeps me motivated.

4.It Showed Me Sometimes We Have to Fight for our Children
Special needs parenting, especially of kids with autism, involves a lot of fighting. You head into it naïve. You think everyone must want what’s right for a special needs kid. You think, even if they don’t, they’ll follow the laws set up to protect the rights of people with disabilities. You’re wrong. Very wrong. You quickly find out one of the main jobs you have as an advocate for your child is putting on your armor and going into battle for him. I once fought a certain insurance company for two years to get them to comply with the law in Pennsylvania that requires them to pay for the formula of infants with galactosemia. They had an attorney blocking me. I didn’t get them to pay for it until my attorney sister got the Governor’s office involved. The fights with the school districts are fairly universal. My son (unfortunately) has moved a lot in his ten years. He’s been in five different school districts and not-a-one gave him the accommodations he needed without me fighting them for it. Fighting the OB’s and nurses and court of public opinion in order to bring him into this world as safely as possible with a natural birth got me ready for that. I was fighting for him right from the start. Before the start really.

5. It Showed Me What Love Could DoIn the end, the most important thing I took from natural childbirth was seeing just how deep my love for my son was, even before I’d met him. It hurt, yes, but only for a time. From that hurt came the entry into the world of one of the most amazing human beings ever to live (in my opinion, anyway). We risk a lot when we decide to bring a child into this world of ours. Miscarriage, infertility, stillbirth, crash c-sections. And the risk, of course, of having a child with special needs. If we face it all with love, though, we see this is the stuff of life. We’re so afraid of pain in our society, both physical and emotional, we do desperate things to avoid it. We abort babies whose genetic testing doesn’t yield perfect results. We schedule labor inductions and pre-order our epidural to make labor convenient and pain and stress free. We wait to have children until we are in the perfect financial and professional situation. We delude ourselves into thinking we have control over things that, ultimately, we don’t. We attempt to escape this pain we fear so much, but in doing so, we become less human. We weren’t put here to live the easiest life possible. We were put here, quite simply, to love one another. When you are the parent of a special needs child, you are given the gift of being reminded of this truth on a daily basis. I got a head start when I found that love in the pains of labor.

Natural childbirth is intense and so is life, if you do it right. I have to believe an experience that half the world has been having since the beginning of time must have value to it, despite what our society says. I don’t believe we’re meant to spend our lives hiding from things that seem hard. That includes parenting special kids. And I don’t believe you’ll ever know the intensity of love and joy I have known if you don’t do the same. Don’t sell yourself short. Life is waiting for you.

Mom, I’m Dooone!– The things no one can prepare you for when you have a child with autism

26 Monday May 2014

Posted by in parenting, special needs

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As I put the finishing touches on my son Mies’s tenth birthday cake, the same army themed cake I’d made at his request for the past three years, I heard a muffled, “Mom, I’m doooone,” coming from the bathroom. Mies was ready for me to come wipe his butt.

Mies has been potty trained since he was five, but, now ten, is still unable to clean himself up and has frequent accidents. It’s one of those things none of the books on autism prepare you for.

It limits the opportunities open to Mies and the activities we as a family can engage in. It is an ever-present topic at IEP meetings. Mies’s teachers insist on barraging the poor kid with “social stories” about stopping what you’re playing and asking to use the restroom politely and appropriately, but that’s not really the issue with Mies.

The sensory issues children with autism have don’t stop at the bathroom door. Some can’t stand the smells and feelings involved and refuse to be any more part of it than they have to be. Some, as in Mies’s case, simply aren’t mentally connected enough to their bodies to feel its cues before it’s too late. Most of the time he does, but even an occasional miss at age ten is a problem.

We’ve managed to cut down on the pants wetting by watching for the scootching around of the pee pee dance and telling him to go, even though he insists he doesn’t have to. It’s not as easy to prevent the other accidents.

I notice he’s not embarrassed the way I would have been at his age, but it makes him sad because he’s afraid we’ll be mad. Mies falls apart any time he thinks he might be in trouble, crying with a look of such pure, wounded disappointment in himself on his face, it breaks my heart every time. No one tells you about that either. He’s truly the sweetest, most sensitive soul I’ve ever meet.

They tell you about the meltdowns, but not how they will get harder to take as the years go by, not easier. It’s not possible to get used to your child becoming completely overwhelmed by the feelings he cannot name, going into screaming, crying, thrashing fits over the most insignificant things. You take him somewhere where he will be safe and where the other kids will be at least somewhat removed from the noise and the stress of it. You listen to the screams and his kicking the wall as you try to keep busy. You try not to lose a little piece of your heart each time, but you never quite succeed at it.

No one can convince you, when your child is first diagnosed, that it will ever get easier, ever hurt less. How can the loss of the dreams you held for him ever be okay? And yet, you grieve, the wound stops stinging with every bump, just as the parents on the message boards said it would. That is, most of the time. Just as you’ve gotten used to the healing, to the wounds turned to scars, you find out there will always be bad days. Just less of them. You still have days when you cry, when it feels like no time has passed at all since that moment that changed your life, when before was divided from after.

You sit through speech therapy sessions, wondering if he will ever speak, trying to picture what it would be like if he never did. Maybe you pray that doesn’t happen. Then, one day, for some of us, it happens. He speaks his first word. And you feel joy of such intensity, relief, gratitude. You feel sadness and heartache too, and the guilt that follows. Always the guilt lurking somewhere.

You will never feel you’ve done enough, no matter how many battles you fight for him over IEPs. You grow patience that would shame the saints, but there is always more you could do. You will never be that mother in the Lifetime movie, so determined to save her child, she does. No one tells you this guilt and helplessness will be the undercurrent of your life now. Or if they do, you don’t remember anymore with all there is to keep in your mind now.

The books you read can only tell you so much because they are about autism. They are not about your perfect child, beautiful in his whole. The doctors you ask your questions of don’t take the time to look in his eyes and see the holy in him.

I wash my hands (twice, for good measure) and return to piping the green icing onto Mies’s cake to look like grass for the little toy soldiers to hunker down in. He runs around making the machine gun noises only he can, fighting his ongoing, never-ending solitary battle against the Germans. But he’s not really fighting alone. I am there with him.