Tag Archives: autism

13 years

03 Wednesday May 2017

Posted by in autism, doctors, kids, love, medicine, PTSD, Rape, special needs, Uncategorized

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I am sitting here reading immunology. Cytokine storm, interleukin-1, natural killer cells. I am doing the thing I have been doing for almost 13 years now. I am trying to fix my babies.

Autism and PANS and Lyme and on and on. Their immune systems have betrayed them. They are attacking their own brains. I must stop the marauding hordes. I must. I’m their mother, after all.

I decided to become a doctor almost 13 years ago. Soldier Boy was a few months old. He’d already had more medical tests and seen more specialists than most of us will see our whole lives. Diagnosis after diagnosis. The idiot doctors couldn’t see he was perfect.

He was perfect. He is perfect. But, he’s not. His body betrays him.

I decided to become a doctor for a lot of reasons. Some noble and some not so much. One of the reasons I became a doctor was because I wanted to fix my son. I wanted to save my perfect baby from the many sicknesses he’d been born with.

I had his little brother while I was studying to apply to medical school. He was different. He was not sick. No tests, no specialists. He never even got a cold or had a fever. Ever.

Then, when he was 3 1/2 he stopped eating and began threatening to kill us and… you can read about it here. He got PANS.

Doctors have been no help. I am now finally a doctor all these years later. Almost 13. And now it is my job to figure things out, to help them, to fix them, to save them.

And so I am sitting up, exhausted, reading through immunology slides trying to understand the autoimmune nature of autism. Trying to understand the things I can do for Lyme triggered PANS that has been going on for eight years.

Innate immune system, cellular immunity, microglial activation, …

As I sit looking at the diagrams of these various immune processes, they are familiar to me. You learn so much in medical school they say it’s like drinking from a fire hydrant. You retain the things you use in whatever specialty you wind up in. But I am finding now the things you haven’t thought of in 10 years come back quickly when you need them.

Ten years ago I sat studying Immunology in my living room in Erie. Its a very clear memory. Sitting in the large overstuffed brown arm chair next to the end table with the touch lamp. The same end table I’d placed our Little People manger scene on at Christmas time. We lost baby Jesus and I replaced him with a Matchbox car because… because little boys. The chair was in front of the big bay window where my boys would climb up excitedly when the garbage truck came by.

I remember so clearly sitting there reading my Immunology book the night before the exam. I was behind on studying and I was excited it was clicking. I think I will do well on this test, I thought.

I was behind on my studying because of The Ordeal. Because of Jeremy. I failed the exam the next day.

Amazingly, the unit after that, Neuroanatomy, I rocked. It was considered the hardest course of first year. I was being actively traumatized by a sociopathic sadist, and I somehow managed to kick some ass. I’d gone from scared to pissed off at that point. I’d decided I was going to find a way to turn him in no matter what. Once I got to that place in my head, focusing on studying wasn’t a problem. I’m very good at compartmentalizing my mind when it’s required

But Immunology, I failed. And so I had to remediate it that summer. Immunology and Pharmacology. He did too. I saw him there. It was in those two weeks of remediation that I turned him in. I passed the remediation exam. And then went and turned him in. I was busy.

For so many years this trauma has been at the center of the story I tell of myself. Not so much to other people but to myself. For years it made me believe I was worthless. And then I entered recovery and I became defined as a survivor. Each step closer to becoming an attending physician was marked with a “screw you Sylvia” (Sylvia being the head of my med school who slut shamed me and tried to kick me out) and a “you’re in jail, Jeremy but look at me”.

I had come to accept this. But now, it isn’t true anymore. It isn’t the biggest part of my story.

Being a doctor was always about my boys. And now it is again. They’re the reason I fought to stay in med school when Sylvia was trying to force me out, heaping degradation on me. They’re the reason I stayed up til 2 in the morning studying organic chem long before I ever met Jeremy Noyes. They’re the reason I have started my own practice now. The thing I have been dreaming of for almost 13 years.

In some respects, it is easier to have rape and torture at the center of your story than to have your sick babies there. What mother wouldn’t rather endure suffering herself than to see her babies suffer? But we are not put on Earth to choose the easy path.

I named this blog I’ll Sleep When I’m Dead when I was in residency working 90 hour weeks, 36 hour shifts. But the truth is, for doctors, the sleepless nights and exhaustion pretty much end when graduation day comes and attending life begins. For autism moms, there is no graduation. There is no finish line. We really will wait our whole lives for a sound sleep.

I went into medical school to become a different kind of doctor than the ones my son had. Condescending, close minded, clueless. I went undercover. Deep cover. And I unavoidably lost my way. Drank the Kool-Aid because there really is no other way to make it out alive.

But I’m on the other side now and I remember who I was. I am an autism mom who became a doctor. I am an autism mom. I am an autism mom who knows immunology and pharmacology and neuroanatomy. I am an autism mom who gave her soul and body and mind and heart for her medical degree. And I have it. And *that* is the story of me. Jeremy and Sylvia were mere diversions.

I am going to help my children and my patients. I am going to speak out and challenge all they do that is wrong. I am going to sleep very little. Because that’s what autism moms do.

Good night. I have some reading to do. 

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.

2016 was-boop!-a little-boop!- stressful boop boop!

19 Monday Dec 2016

Posted by in autism, christianity, love, special needs

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2016 was a helluva whaddayagonnado kinda year. Bernie rose and then had the election stolen from him by corporate Democrats. Trump won, ushering in an age of all out fascism. Brock Turner got a slap on the wrist for rape. Various police got absolutely nothing for murdering people of color. Aleppo. Standing rock protestors getting limbs ripped off for peacefully protesting. Global warming it is now unavoidably obvious is going to kill us all off pretty soon.

On a more personal front (hey, stick with me here. this post will take a positive turn soon. I swear), my autistic legally blind son got horribly bullied in our school district. My other son’s anxiety reached an all time high and his tics escalated to a whole new dimension. My marriage disintegrated, culminating in separation. I had a post-pregnancy hormonally induced mental health episode. My cousin died from mental health problems. A dear kind friend died from overdose. I found out some other beautiful friends from high school are on heroin (and therefore, will die soon enough. opiates are what they are). I broke off with my family. Is that enough, people? You want more? Oh yeah, our four year old still isn’t potty trained…

But here’s the thing:

Millions of people voted for, donated to, fought for a Jewish democratic socialist who demanded universal health care, maternity leave,  a $15 minimum wage and a kinder approach to Palestine. If you’d told me in 2015 that would happen, I’d have told you that you were nuts. And even though Bernie didn’t win, he’s still out there fighting like hell. And people listen.

For the first time ever, we actually talked about rape and the disgustingly low conviction rates and sentence lengths, as a nation. Some people even said “rape”. Do you realize how huge that is? (Most of the headlines still used euphemistic bullshit and called it “sex” but, hey, it’s movement).

Indigenous activists and their allies won. Won. The people who have endured the most, who have had the most stolen from them, who have suffered the most violence, in this nation won.  Did you expect that? I didn’t. They worked and sacrificed and prayed and endured and… won.

Pennsylvania (my home state) legalized medical marijuana despite the ill informed Pennsylvania medical society opposing it. I did not expect this. It’s huge.

My legally blind son with autism started at a new school (not in our district) where he is thriving. He went to an amazing therapeutic summer camp. He’s made more progress at his new school than he’s made in the past few years combined.

My son with anxiety got a great psychiatrist and got comfortable at his school and is doing a ton better. (and he doesn’t make his “boop” tic unless things are really stressful now. Boop!)

My most recent episode combined with other events from this year caused me to truly shift the way I approach my mental health. I’m now committed to doing every single little thing I need to do to keep myself healthy. No matter what. I’m working through issues I thought were un-workable. I’m feeling more optimistic than I have since I was five. About myself, my kids, my marriage.

I worked through my lack of enthusiasm for Catholicism and have started a whole new kind of Catholicism in our home. I’m reconnecting with the mystical.

My son sang beautifully in his school musical. I had one of the happiest days of my life taking my daughter to the Nutcracker. My son with autism can now get his head wet in the pool without melting down (after 8 weeks of twice daily swim classes at his awesome therapeutic summer camp). My baby turned one and still has the chubbiest most delectable thighs you’ve ever seen. He calls me Mama and loves the water like a fish.

I prescribed suboxone to a lot of patients who hopefully will not die from opiates as a result. I started at a new urgent care where I actually have time to talk to my patients. I had a paper on intimate partner violence published in American Family Physician and got invited to speak at some medical education events.

I’m not going to sugar coat things. I’ve got nothing to say to you about Trump or this country’s refusal to face the racist police violence plaguing us. Global warming’s not looking good either. But, as Howard Zinn said, pessimism is illogical. Amazing things you didn’t see coming happen all the time. Look how many in 2016 alone? And, as my old pastor used to say, God is good all the time. All the time, God is good.

Happy holidays, everyone. Here’s to finding out what 2017 holds for us.

I have slept in the bed with evil

09 Wednesday Nov 2016

Posted by in autism, Evil, PTSD, Rape, Sin

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I am wearing all black today. I am in mourning. I am not going to make a joke about my goth days in high school. I am not going to compare the title of this post to that awful made-for-TV movie from the nineties starring Tori Spelling, “Mother May I Sleep with Danger.” This is no joke. This is not a nightmare we will wake up from tomorrow, a bipolar fugue we will not remember when it ends and we find ourselves far from home. It may be the 1930s.

I do not use the word evil lightly. A lot of people have referred to Hillary Clinton as evil in this election cycle. I am as big a critic of Bill Clinton’s policy and Hillary’s record on free trade, her foreign policy, and her “super predator” comments as anyone. But she’s hardly evil.

For four months, I slept in the bed of a man who can rightly be called evil. A man who loved raping and torturing little girls above all else, who admired Hitler, who raped me again and again and again and threatened to kill my children. A man who disturbed even the seasoned federal judge and the FBI agent who were involved in his case. He was a medical student on his way to becoming a doctor. Nobody suspected. None of us even knew such evil existed as it all came out, certainly not that our fellow medical student possessed the evil.

Trauma changes you. It changes your relationship with yourself, with your family and friends, with God, with the world itself and every person you encounter day by day. They say the fundamental experience of trauma is the feeling you have been abandoned. By the people you love, by the ones who were supposed to protect you, and by God himself.

My Ordeal changed me in so many ways but one of the worst was the knowledge of just what evil exists in our world. Evil I did not know existed. And I had not lived a sheltered life to that point. I was not naïve. And yet I was. My fear now is that we as a country are being naïve. Despite our very violent history.

We cannot underestimate the possibilities of this new world. We cannot afford to be naïve. I do not know what will happen but I know it could be very, very bad.

A few years ago we were at a festival at a place called City Island in Harrisburg. Our three sons went off on their own while my husband and Princess (still a baby) and I stayed and chatted with some friends. Eventually two of our sons came back, but not the third. Our legally blind, autistic son was not with them. They told us they’d had some kind of fight with him and decided to leave him. They were too young to know not to do this. Too naive.

My husband and I split up to cover the island looking for him. And as I looked in booths and the dense woods that framed the island, pushing Princess in the stroller, terror went through my body. My mind went to Jeremy. To the people he talked to on the internet who also loved raping and torturing children. Who sent him images of their horrific acts, recorded in stills and movies. The ones presented at trial that took any remaining innocence from anyone in that courtroom. I cried as I looked. I pictured what might happen to him. Things that are worse and more common than we allow ourselves to believe. I didn’t want to scare Princess, but I could not hold back the tears. My husband found him and I ran up to him, shaking and crying and finding it hard to bring the oxygen into my lungs.

I do not know how so many people at Penn State stood by while little boys were raped and did little or nothing. I will never comprehend that. The coaches, the janitor, Mike McQuery whatever the hell he was. I could have been killed. My children could have been killed. I laid down my body. I laid down my mind. I lost seven years of my life to PTSD. So did my children and husband, lost seven years of me being truly present in our lives. I have no regrets and never have. Not for a second. But I know the men of Penn State are much more common than people like me. And this election confirms it.

Evil can flourish, slowly, insidiously. I see friends who loved Bernie so much now so glad they voted Trump. I can see the mainstream Republicans now falling in line or being eliminated (we’re assured by Trump’s people the are making “a list” of “his enemies”). I can see the inevitable persecution of journalists and violent crackdown on peaceful protests. Hate crimes and sexual assault rates rising (if you don’t believe me, look at what happened in the aftermath of Brexit). Muslims forced to wear badges identifying them (yes, Trump said this).

You think I exaggerate. You think this couldn’t be the 1930s. And I hope you’re right. But I know in my bones you probably aren’t.

God bless and protect the Union.

 

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.

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

26 Monday May 2014

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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.