Category 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. 

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.

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.