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Mother Knows Best

17 Apr

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: http://www.flickr.com/photos/truthout/3901813960/. This picture has a creative commons attribution license.)

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Autism Diagnosis: Blessing, Curse, or Both?

12 Jan

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

13 Oct

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.