Confessions Of A Pro-Vaccine Autism Mom


Today I took George to the doctor to get his shots. I was very nervous about this prospect: George used to have a terrible fear of doctors, and would always sit in the waiting room literally quivering with anxiety until it was his turn. Fortunately he’s a healthy child and hasn’t needed the services of a doctor for a couple of years, so I curious to see what his reaction would be like today.

When we walked into the waiting room, he sat down and calmly started playing with a toy. He didn’t flinch at the sights and smells typical of a doctor’s waiting room. We didn’t wait for long before we were called into the doctor’s inner sanctum. There, too, George was remarkably laid back as the doctor looked him over.

His composure fell apart somewhat when it was time for the needles, but as soon as they were done and the Band-Aids applied, all he needed was a couple of minutes of hugging, and then he was fine.

Ah, yes. The needles.

As an autism parent who keeps her kids vaccines up to date, I sometimes feel like a minority voice. Or perhaps it’s just that the anti-vaccine people tend to be more vocal than those on my side of the fence. But this is not intended to be a post about who’s right and who’s wrong. Everyone has their own journey, and their own reasons for the choices they make.

My position – speaking only for myself – is that vaccines cannot be blamed for the autism epidemic. You can show me a thousand statistics proving that I’m wrong, and I can show you a thousand statistics proving that I’m right. I do not dispute that some people have bad experiences with vaccines. But I do not believe that anyone has made a convincing enough case to generalize those incidents to the population as a whole.

I know with absolute certainty that George came out of the womb with autism. When I look back over his babyhood, I remember many thoughts of doubt going through my mind.

He should be swatting at toys by now, but he stares right through them.

Shouldn’t he be interested in the texture of these fabric books?

At what age are babies supposed to sit? Crawl? Walk?

Why is he ignoring me when I call his name?

I knew early on that something was going on. Vaccines had nothing to do with it.

Still, there are people who are critical of my choice to vaccinate. Deciding to vaccinate my younger son was like walking through a minefield.

“You are vaccinating your younger child, even though your older child has autism? Really?

From the way some folks talked, you would have thought I was ripping out my child’s fingernails one by one.

My kids’ vaccinations have always gone without incident. There are generally a few tears that are forgotten by the time we are getting back into the car, and there may be an evening of crankiness. Someone might sleep badly. By the following day, everyone is pretty much back to the way they were.

My name is Kirsten, and I willingly vaccinate my child with autism.

(Photo credit:Daniel Paquet.This picture has a creative commons attribution license.)


First, Do No Harm

Today I chose a bonus prompt in the National Health Blog Post Month challenge: offer advice to new doctors and nurses.

Congratulations! You have made it through medical school in one piece and you have taken a version of the Hippocratic Oath, in which you promised to do no harm.

As you hammer a nail into the wall of your office to hold your shiny new certificate, I have some words of advice for you, based on my own encounters with medical professionals over the years.

* Most of us have encountered doctors who think their medical degrees make them instantly superior to anyone else. They are the ones who are arrogant and condescending, and do not take into account that their patients are human beings with feelings. Don’t be one of those doctors.

* Most of your patients recognize the value of medication where appropriate, but please don’t over-medicate. Antibiotics are fine, but not every time someone sneezes.

* Just because my kid is energetic, that doesn’t mean he has ADHD. It just means he’s a kid. Don’t tell me I should medicate my kid for being a kid.

* If a mom tells you she’s concerned about her child’s development, don’t give her the run-around. Don’t make her fight for a referral, and don’t tell her to wait. That waiting can be costly to a child who could do very well with early intervention.

* Be gentle when handing down a child’s diagnosis to his or her parents. Remember that the parents’ lives are about to be changed by what you tell them. And remember that what the parent of a newly diagnosed child needs more than anything else is hope.

* Don’t keep your patients waiting. If someone makes an appointment for ten in the morning, they don’t want to wait until noon before you see them. Double and triple booking your patients tells them that you have no respect for their time.

* If you see people who seem wary and distrustful, don’t take it personally. It’s just that there are many “bad” doctors out there and some of us have been burned. If you treat your patients with kindness and respect, you will earn their trust.

What advice would you give to a new doctor?

(Photo credit: mrsdkrebs. This picture has a creative commons attribution license.)


New Autism Diagnosis? 5 Tips for Parents

It’s a scene that many parents are all too familiar with. You’re sitting in a doctor’s office and you’ve just received news that your child has autism. You did know, of course, that something was wrong – after all, that’s why you had your child assessed – but you’ve been in a weird twilight zone of denial, in which you have managed to convince yourself that this thing that’s wrong with your child is just temporary, that it’s nothing a bit of speech therapy or O.T. won’t cure. And now, here’s this doctor telling you that your child will be living with autism for the rest of his or her life.

You can barely listen as the doctor goes on about how your child’s trajectory through life will be atypical, delayed, and fraught with challenges. You are too stunned to pay attention to anything but the hopes and dreams you had for your family crashing all around you.

How do you cope? How do parents find out that their child has a lifelong developmental disability – one that will in all likelihood necessitate some level of permanent care – and then go on to live some kind of a normal life?

Tip #1 – Remember that the doctor does not have a crystal ball

The doctor can’t just say to you, “Your kid has autism. See ya!” He has to talk to you about therapies, strategies, next steps – and that inevitably involves talk about how he sees your child’s future. But the thing is, many doctors tend to be a bit pessimistic, and they will give you the worst case scenario.

When we were getting my own child’s diagnosis five years ago, the doctor could not have painted a bleaker picture of the future if he had tried. We heard all about the stuff my son would never achieve, experiences he would never have, things he would never be able to do, the intensive level of care he would need for the rest of his life.

The doctor was not trying to be mean. He wasn’t trying to be negative. He was just presenting what he saw to be the reality. He had no way of knowing that in the first year of IBI therapy, this kid would make 23 months worth of gains. He did not know about the mathematical aptitude or unique problem-solving skills, and he could not predict that given the right educational environment, my child would be able to soar.

Anything the doctor tells you about your child’s future is just a guess – an educated guess, but a guess nonetheless. Don’t let bleak predictions make you give up hope.  Your child needs for you to believe in his or her potential, and to be frank, if you have a bit of faith, it will do your own spirit the world of good.

Tip #2 – Watch out for information overload

Human beings are curious by nature, especially when it comes to the wellbeing of their offspring. I would venture to say that most parents, on receiving their child’s autism diagnosis, go home and make a beeline for the computer so they can Google “autism”. I know I did.

The Internet can be pure crap, though. A Google search for “autism” yields over 76 million results. If we very generously assume that 10% of the information on the Internet is completely solid and scientifically proven and not the subject of any debate or controversy, that leaves you with seven million pages of “good” information.

It is a daunting task, trying to filter out the seven million pieces of “good” information from all the junk. It can make the most hardy of souls feel like they’re drowning.

Information is all well and good, but it has to be consumed in manageable doses, especially in the beginning. The diagnosing doctor will give you fact sheets and other information. That is all you need in those initial days while you are trying to adjust to this new reality.

Tip #3 – Get your name onto waiting lists and find out about funding

Your doctor will probably give you the names and phone numbers of local services, like speech therapy, O.T. , and autism intervention services. If he doesn’t, call him back and ask. Then call and enroll for the services. Some areas will have one central place that organizes all of the services; in other places it is more fragmented. No matter which way it works, it is better to start services as early as you can, and unless you live in some kind of Utopia, the places you call are bound to have waiting lists.

At the same time, find out about funding. If you live in a country with socialized health care, as I do, then many of the services for your child could be covered by the government. You may be entitled to disability tax credits and funding for respite care or specialized equipment. Your local autism foundation should have information about the available funding, and they may even have experts who will help you fill in the forms.

Tip #4 – Don’t let autism define your child

This may seem self-evident, but in the wake of receiving the blow of an autism diagnosis, it is hard to think of anything else. Parents of newly diagnosed kids often go through a kind of grieving process as they come to terms with the loss of what they thought their “reality” was. You may find your heart breaking every time you look at your child.

But remember that the diagnosis itself has not changed anything. Your child is still the same person he or she was yesterday, or last week, or last month. Your kid may have autism, but he or she is first and foremost a little kid, with those little quirks and personality traits that guarantee uniqueness.

Autism will always be a part of who your child is, but it is far from being the full picture.

Tip #5 – Take care of yourself and your relationships

When I saw my family doctor shortly after my son’s diagnosis, he gave me a startling statistic: about 80% of couples who are parents of kids with special needs or chronic illnesses split up within two years of diagnosis. It is easy to be on the outside looking in, and say that parents should draw strength from one another, but the truth is that something like this puts a huge strain on many relationships.

The thing is, each parent is thinking about autism, and how they can help their child. This becomes the singular focus consuming both of them, so much so that neither of them has room for anything else. And so they neglect themselves, and they neglect each other. It’s not their fault – they are just putting their child’s needs ahead of their own.

Do we not deserve to be happy, though? Yes, parenting our kids is the most important job we’ll ever have, but we are also individuals in our own right, and if we neglect ourselves and the relationships with the people we care about, we will drown.

So make sure you take time to be with your partner, just because. Spend time with your other children. Nurture your friendships, and most of all, take time out for yourself.

And don’t feel guilty about taking care of yourself. You deserve it.

(Photo credit: Kirsten Doyle)


An Anniversary of Loss

Ten years ago today, I lost my first baby during the second trimester of pregnancy. Looking back, it’s remarkable that the pregnancy got as far as it did, having been fraught with problems from the very start.

The doctor I had at the time was absolutely dreadful. When I told her that I was having problems, she said I was being paranoid. She said that first trimester bleeding was “normal” and resolutely refused to refer me for an ultrasound. I tried to point out that every hit I got on Google disagreed with her, and she proceeded to make me feel like an idiot for having researched my symptoms.

What did I know, right? She was the doctor, and she made it very clear that she was the one with the knowledge.

Her attitude only got more arrogant and patronizing after my husband and I took matters into our own hands and went to the emergency room, where an immediate ultrasound was ordered. There was the baby, with a heartbeat and everything. The growth wasn’t what it should have been, but that did not deter the doctor. Apparently I was so stupid that I did not even know when my last period had been.

Not that I’m bitter or anything. I mean, the doctor had the worst bedside manner in the history of doctors, but it’s unlikely that better treatment would have changed the outcome. I was devastated when I lost my baby, but to be honest, I wasn’t all that surprised. No part of me had expected that this pregnancy would go to term.

The doctor could have helped prepare me, though. Perhaps if she had just been honest about what was almost inevitable, if she had told me where to go for support, the aftermath would have been easier to bear.

Or maybe it wouldn’t have.

Yes, it probably wouldn’t have.

I’m still mad at her though, after all these years. No-one deserves to be treated the way she treated me.

I always feel conflicted on this anniversary.

On the one hand, there is sadness, a feeling of loss, and a “what if” kind of wondering.

But on the other hand, if that baby had lived, I wouldn’t have George. And I just cannot imagine life without George.

Sometimes I wonder if perhaps the whole chain of events happened for a reason, that all along it was leading up to the arrival of this beautiful boy who had been waiting in the wings the whole time, just waiting for his moment to be born.

My baby took a piece of me with her when she died. But she gave me so much more by paving the way for George’s arrival.



Mother Knows Best

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 17 – Learned the hard way: What’s a lesson you learned the hard way? Write about it for 15 today.

I first started having doubts about our family doctor when he kept telling us that there was nothing that could be done about my husband’s sciatica. It was a very disappointing thing to hear: although not a life-threatening condition, sciatica had been giving my husband a whole new kind of agony for a couple of years, and now we were hearing that he would have to live with it for the rest of his life.

It seemed improbable.  What about physiotherapy, or if we were really pressed, surgery? What about a simple MRI scan or a referral to a specialist?

But my husband’s family had been seeing this doctor for years, and they seemed to have complete faith in him. My husband was resistant to my suggestions to see another doctor.

A few months later, when I was hugely pregnant, I took my older son to the same doctor for his two-year check-up. All of the vital signs looked good. George was in healthy percentiles for both height and weight and he was not showing any signs of illness.

With the main purpose of the visit accomplished, I said to the doctor, “George isn’t talking.”

Indeed, George wasn’t talking. The only words that he used in a contextually appropriate way were milk, juice and jump. Like all new parents, I had practically memorized the developmental checklists, and I knew that George should be doing far more at this age.

The doctor asked a few questions, and then agreed that George did indeed seem to be delayed in his speech.

“But,” said the doctor, “The range of normal development is so broad, particularly where boys are concerned. I will give you some speech exercises to do with him at home, and we will see where we are in a year’s time.”

Every instinct I had was telling me that the doctor was wrong, that waiting was not the thing to do. I knew, had known on some level since George was an infant, that there was something wrong.

Instead of trusting my instincts, I listened to the doctor. I did the speech exercises with George, hoped against hope that he would simply open his mouth and talk one day, and then felt extremely guilty when he didn’t improve. Had I not done the speech exercises right? If I had spent more time on it would I have seen results?

At George’s three-year check-up I finally got a referral for a developmental assessment. When the autism diagnosis came in, all I could think of was how the doctor had told us to wait, and worse, how I had listened to a man I already had reservations about.

I thought about the year that George had lost because of this. The year of speech therapy and other autism-related interventions.

The guilt just about killed me.

And I swore that I would never, ever go against my “mother’s intuition” again.

(Photo credit: This picture has a creative commons attribution license.)


Autism Diagnosis: Blessing, Curse, or Both?

Receiving my older son’s autism diagnosis four and a half years ago was both a blessing and a curse. On the one hand, this diagnosis meant that there was something wrong with my son. I had known this for a long time, of course, but having it told to me officially meant that I could no longer hide behind the cloak of denial. I had to face the fact that my child had a developmental disability that would, in all likelihood, affect him for the rest of his life.

On the other hand, though, having the diagnosis meant that we could now get our son the help that he needed. Instead of having a vague sense that there was “something wrong”, we had a name for his condition. We had something to Google, we learned what services to seek, and we entered the labyrinthine world of special needs funding. Although we were devastated, having the diagnosis did make us feel a little more empowered.

About two years later, I stumbled upon an Internet support group for parents of children with autism. This group was not designed to diagnose, or debate, or judge. It’s primary purpose was – indeed, is – to give parents a safe place to talk about the daily challenges of autism, to vent about whatever was bugging them, and to freely utter the phrase, “Autism is bullshit” without having someone jump down their throat.

This group has turned out to be an invaluable resource for me. I have made friends there. I have been able to give and receive advice. I have come to appreciate that in the autism world, there are children both better off and worse off than my son. I have been allowed to express hope and despair, I have been able to laugh and cry.

And I have been able to learn. Through the experiences of other people, I have been able to develop some strategies to help myself, my son and my family. I have come to have a better understanding of what role my younger (neurotypical) son can play in his brother’s life. I have realized that even the strongest of marriages can be strained by the presence of special needs, and I have learned some ways to deal with that. I have learned about how different things are in the United States vs. Canada where autism services are concerned.

I have learned about the difficulties some parents experience, first when it comes to getting a diagnosis for their children, and secondly, when it comes to getting and retaining services. And just this week, I have learned that all of this may be about to change under the new DSM-V diagnostic criteria. Whether it changes for the better or for the worse is an opinion still up for grabs.

Tomorrow: how will the autism diagnosis change, and what does it mean?


A Letter Of Thanks

Dear Doctor P.,

Hootie And The Blowfish were playing on the radio when the baby growing in my belly died. I could tell from the cramp that tore through my body, from the sudden spike in my body temperature that left me reeling, and from the change in energy that comes from a soul winging its way to another world.

My baby girl, gone before she could be born.

For ten weeks you had brushed me off and dismissed my concerns.

“Women bleed during pregnancy all the time,”  you told me.

In the beginning I listened to you. You seemed so composed and your explanations made sense. You were immaculately put together, with your tailored suits and your perfect hair and your flawlessly applied crimson lipstick. You looked every inch the professional. Anyone looking at you would have had no doubt that you were competent in a cold, calculated kind of way.

I may have felt intimidated by you, but I had no reason to doubt you.

I didn’t even doubt you when, ten days after the bleeding had started, you continued to tell me that nothing was wrong.

Although I believed you, I hated you. I want to make that absolutely clear. I hated your air of superiority and your utter lack of compassion. I hated the way you told my husband – even though I was sitting right beside him – that I was “acting in a paranoid and unstable manner.”  I hated the way you ordered me not to do research on the Internet, as if I somehow didn’t have the right to the knowledge. I hated it when you insisted that an ultrasound would not be helpful, that it could in fact harm my baby.

I despised you and everything you said with an intensity that was almost poisonous.

And yet, I respected you. Somehow, despite everything, you were credible. You made me believe, with medical jargon that was beyond my realm and yet somehow logical, that it was OK for me to be bleeding from Week 8 until Week 18 of my pregnancy. When you finally deigned, in your God-like way, to allow me to have an ultrasound, you effortlessly explained away the too-slow growth and the irregular fetal heartbeat. You even succeeded in convincing me that I was crazy to think my baby was dying.

As I lay there on my kitchen floor that day, doubled over with pain and the beginnings of grief, with Hootie and his gang mockingly blaring out, “It’s gonna be a bright, bright sunshiny day,” I couldn’t help wondering what the doctor would say now.

When I walked into your office and told you about my dead baby, were you still going to somehow convince me that everything was OK? Were you going to say, “Oh, don’t worry, it’s perfectly normal for women to lose their babies after ten weeks of untreated complications?”

I want to thank you, Doctor P. Whether or not you contributed to the loss of my baby, and to the unbearable heartbreak that my husband and I endured, I am truly grateful to you. You opened my eyes, you see. You taught me not to trust the professionals I turn to for help, to question everything I hear, and to view life through shades of scepticism.

Thank you, Doctor P., for making me grow up.

This week’s Indie Ink Challenge came from Kelly Garriott Waite, who gave me this prompt: Take a person – in your fiction or your life–whom you despise. Now write a piece–a letter, a scene, whatever – showing love, admiration, or respect for that person.
I challenged Diane with the prompt: Tell the story of a telemarketing call that takes a very surprising turn.