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Autism Diaries: On This Day…

February 2, 2016 By
the autism boy

The Autism Boy

Thirteen years ago I was pregnant. The pregnancy was so new that nobody knew about it apart from me. I remember lying in bed hugging this secret close to me, this secret that I was sharing with no one but the baby growing inside me. I was terrified that my husband and I would experience a repeat of the loss we had been through just a few months previously. Stay with me, I silently begged the baby.

Twelve years ago I was a new mom. I spent time lying on a blanket with my months-old babe, holding his tiny hand in mine. I would look at his little fingers, at the curve of his cheek, and the fluttery eyelashes – and I would marvel at how something so small could be so perfect. I felt as if the future was a blank slate, just waiting to be written by this brand new human being.

Eleven years ago, I was a parent who had recently lost a parent. I held my one-year-old son, feeling immense gratitude that he had spent some time in his grandfather’s arms. I was afraid: when I lost my father, I lost a bit of my security. I somehow became more of an adult, and I wasn’t sure that I was ready for that.

Ten years ago, my little family had gained a new member. As I cared for my newborn baby, I worried about his older brother. I knew that something was not right, but the doctor said, “Wait. Give it some time.” When your instincts say one thing and your doctor says another, you have to decide which one to listen to. I listened to the wrong voice and waited.

Nine years ago, we had finally gotten the doctor to listen, and our firstborn son was on the waiting list for a developmental assessment. We didn’t need an assessment to know that something was wrong, but we were hopeful that whatever it was, it could be fixed. While we waited, we took our son to speech therapy and celebrated every single word that he uttered.

Eight years ago, my husband and I were trying to settle into our roles as autism parents. The initial shock of the diagnosis had worn off, and we were working our way through the labyrinth of government funding and services. At the same time, we were adjusting our dreams and goals to fit the new reality of autism.

Seven years ago, our autism boy was about to start his ABA therapy. It was a world that was completely unknown to us, a form of intervention that works for some kids but not others. Would it work for our boy? We had no way of knowing. A further assessment put him on the severe end of the autism spectrum, but we were urged not to lose hope.

Six years ago, we were one year into the ABA therapy, and we had seen our son make phenomenal progress. His vocabulary had exploded and we were starting to see the emergence of some amazing qualities. A follow-up assessment showed that he had made 23 months’ worth of gains in a 12-month period. Hope sprang eternal.

Five years ago, the boy was slowly, slowly being phased out of ABA therapy and into full-time school. We worried about whether the cessation of therapy would stall the progress we had seen him make. We were advised to expect a temporary plateau followed by slow but steady progress. Anything could happen, we were told. A full decade of school remained. A lot can happen in ten years. I held onto my rose-coloured glasses.

Four years ago, I suffered a devastating loss when my beloved aunt died in a freak accident. For the first time since the death of my father, I had to go away without my family. Leaving my husband and boys was excruciating, but I knew that I was needed on the other side of the world. The autism boy coped well with this big upheaval, helped enormously by his incredible little brother.

Three years ago, my stubborn optimism started to give way to realism. Yes, my son had many capabilities. He was doing well in his special ed program, and he was able to do things by himself, like get dressed and use the bathroom. He had come a long way since the days of his diagnosis. But there was still a lot that he couldn’t do. For the first time, I started to realize that in all probability, my boy would never attain complete independence.

Two years ago, we had to fight for our boy. The special ed programming at his school did not continue beyond Grade 6, and the placement he was slated for filled us with the horrors. The classroom – indeed, the entire school – was overcrowded and staffed with well-meaning but overwhelmed teachers. As I walked the hallways during my one and only visit, I detected an aura of barely contained hysteria. We were not going to risk the years of progress we had seen. And so, with my son’s principal by our side, we started a long series of meetings with the school board. And once again, we waited.

One year ago, the principal of my son’s school called with the news that the battle had been won. A special ed program for Grade 7 and 8 kids was being brought into his school – a school where the general student body forms a protective and loving wall around the special ed kids. I cried with joy, not only for my son, who was getting another two years in this amazing environment, but for all of the kids whose paths we had had a part in altering for the better.

Today, my son is in Grade 7, in his first year of the newly implemented program. He is doing well and continuing to make progress. I am happy with where he is, but I am afraid of where he is going. Because unlike the day of his diagnosis, when we had years of time ahead of us, we are now very close to the future we talked about then.

One year from now, the boy will be months away from finally leaving the security of the only school he has ever known. We do not know where he will be going for high school – that chapter of the story is starting to be written now. In the next few months – a full year ahead of when this would happen for typical kids – we will be starting to visit high schools, interview principals, look at special ed programs.

This year, next year, and for the rest of our lives, we will continue to do the best thing for our autism boy, to give him the opportunities he needs to reach his full potential – whatever that potential turns out to be.

This is an original post by Kirsten Doyle. Photo credit to the author.

Filed Under: Assessment, autism, Autism Diagnosis, Education, School, Special Education Tagged With: , , , , , , , , , , , , , , ,
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His Brother’s Keeper

January 25, 2015 By

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It is a cold snowy afternoon, and the boys have just finished doing their homework. George – eleven years old now and as tall as me – is sitting on the couch trying not to cry. I am on the floor with my back up against the couch, holding his foot in my lap. I start ministering to his sore toe as gently as I can, knowing that no matter how hard I try, it’s going to hurt.

For the last couple of weeks, George has been plagued by an ingrown toenail. He was at the doctor earlier in the week – a feat in itself for this boy with autism who finds doctors to be mysterious and scary – and I am carefully following the care-and-cleaning instructions that I have been given.

He tries so hard to be brave as I clean and bathe his toe, but he cannot help getting distressed. As he cries out in pain, James suddenly appears in front of us. James – nine years old and full of energy – is just in from throwing snow in the back yard. His gaze moves from his brother on the couch to me on the floor surrounded by First Aid supplies.

“I want to do it,” he says.

“You want to do what?” I ask, not understanding.

“George’s toe,” he says. “I want to do it. George is my brother. I’m the one who gets to take care of him.”

I regard my son, blown away yet again by how much love and compassion is within him. I think about the practicalities of him dressing George’s toe and how I have already been kicked several times during these First Aid sessions. I don’t want James to get hurt.

But my Spidey-sense is telling me to listen to James. I switch places with him, and following my instructions, he calmly takes care of George’s toe. George is still crying but he is visibly less distressed. Maybe James’s small, light fingers are gentler than mine. Or maybe George is responding to the love of his brother.

James uses a little bit too much of the antiseptic lotion, and the dressing and bandage are a little haphazardly applied. But none of that matters next to the waves of kindness that are radiating from James.

With the job done, James gently kisses the newly applied bandage and gets onto the couch.

“You’re my George,” he says, wrapping his arms around his brother.

This is an original post by Kirsten Doyle. Photo credit to the author.

Filed Under: Brothers, Children, Love Tagged With: , , , , , ,
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Diagnosis Day: 8 Things I Wish Someone Had Told Me

April 12, 2013 By

SAMSUNG

Do you ever look back on a particular day in your life and wish things had gone differently? If only you’d said this thing, or if only you’d done that thing. We all know, of course, that those “if only” scenarios don’t do us one whit of good in terms of the outcome, but that doesn’t mean we’re not allowed to think of them. Sometimes we can use those lessons in the future, and sometimes we can help other people going through similar things.

One of the most pivotal days in the life of an autism parent is the day of their child’s diagnosis. When I look back on that day, I remember shock, tears, and a sense that a giant constrictor had wrapped itself around me and was squeezing me so tightly around the chest that I could barely breathe.

Realistically, there’s no way to completely cushion a blow like this. But maybe – just maybe – there are some things that would make it easier to bear. Here are the things I wish I had known when I got the diagnosis.

1. The doctor does not have a crystal ball. Any dire predictions that he makes for your child’s future are not set in concrete.

2. If you Google too much too soon, you can drown under the weight of the information overload.

3. Your child is first and foremost a child. Don’t let your child become the diagnosis, the whole diagnosis and nothing but the diagnosis.

4. You may feel as if your reality has shattered, but all that’s happened is that your reality has changed. You have to give yourself the space and time to get used to your new view.

5. Now more than ever, you need to nurture your relationship with your partner.

6. Apply for all the funding and services you can, even if you think odds are stacked against you. There’s always the chance that something will stick.

7. Don’t be afraid to cry. Even if it’s in front of the kids. It’s OK for them to know that you’re human.

8. Know that you can do the whole special needs parenting thing. You may not feel that way in the beginning, but you will. You don’t have to know all the answers – because let’s face it, none of us ever does – just know that you will be the parent your child needs you to be.

 

Filed Under: Autism Diagnosis, Health Activist Writers Month Challenge Tagged With: , , , , , , ,
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A Letter To Autism

April 6, 2013 By

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Dear Autism,

Although we were only formally introduced to one another six years ago, we have really known each other for longer than that. I didn’t realize it at the time, but you came into my life 9 years, 7 months and 4 days ago, on the day of my son’s birth.

You were there throughout his infancy, staying up with me during the late-night feedings and diaper changes, looking over my shoulder as I tried to figure out what was making him cry, and watching as I tentatively navigated those uncertain months of new motherhood.

You were there during his toddler years, and it was then that you really started to make your presence more obvious. You guided those tiny little hands of his as he repeatedly spun the wheels of toy cars without actually playing with them. You got him interested in that piece of string that he spent hours and hours examining. You choked his language skills and made sure he wouldn’t be interested in playing with other kids.

I didn’t know your name yet, but I knew you were there. I felt as if you wanted my beautiful boy all to yourself. You didn’t even want to share him with me. I hated you and felt threatened by you.

On the day the doctor told me your name, I cried. The doctor said that you would have control of my son forever, that he would never be able to achieve anything because of you. Hearing that broke my heart.

When I was done crying, I made a decision. I was not going to let you win. I was not going to let you ruin my son’s chances to have the best life possible. I knew that I would not be able to get rid of you, though. So we were going to have to learn to live with each other, you and I. Maybe we would even have to become friends.

And so, instead of trying to beat you down, I tried to find ways to work with you. You weren’t going to let my son learn in the ways that other kids learn, so I found people who would teach him in ways that you would like. You weren’t going to make it easy for him to talk, so I had to start at grass-roots level and show him ways to communicate in your presence, in ways that you would allow. You didn’t want him to enjoy playing with other kids his age, so me and my family became his playmates, teaching him how to play without letting you take the fun out of it.

As we have gone through all of this together, you and I, I have made the most astounding discovery. There are actually things about you that I like. You have accelerated the development of whatever part of my son’s brain is responsible for math. In blocking those quote-unquote “normal” ways of thinking, you have opened up his mind to thinking in ways that are unique and incredible. You have given him the ability to single-mindedly focus on a task until it is done just the way he wants it. Because of you, my son is determined and hard-working, and does not believe in giving up.

Best of all, you have touched my beautiful child with his own special brand of magic. He has an innocence and pureness of spirit that makes him light up the space around him. Because you make him think in such a unique way, he has a quirky sense of humour that brightens up the lives of those who are near him. He has a fierce love for me, for his dad, and for his little brother.

You have given me a special gift as well. You have taught me how to appreciate the little things. Every word, every sentence, every little baby-step of progress is a cause for celebration. I have learned how to be happy in the most adverse circumstances.

I cannot go far enough to say that I like you, Autism. But without a doubt, there are things that I respect about you, and while you have made my life so hard and heartbreaking in many ways, you have enriched it in other ways.

I have come to terms with the fact that you will always be there, and I think by now you know that I’m not going anywhere, and I am not letting you get the better of my son. I like to think that for the most part, we can peacefully coexist. There are undoubtedly days when you win, and there always will be.

But you will never stop my son, because he is unstoppable, and because he has a family who will fight for him tooth and nail, every step of the way.

Yours truly,

George’s Warrior Mom

(Photo credit: Kirsten Doyle)

Filed Under: autism, Health Activist Writers Month Challenge, parenting Tagged With: , , , , , , , , , , , ,
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Five Early Signs of Autism: My Family’s Experience

November 8, 2012 By

My boy at the Autism Centre family day

When I tell people that my son has autism, the first question many of them ask is, “How did you know there was something wrong? What made you get him assessed?” Many people asking this question are having concerns about their own children, weighing up the idea of taking them to a pediatrician.

It would be so easy to point worried parents to websites listing early childhood development checklists and signs of autism, but that would only help a small number of people. The trouble with autism is that it is so individualised. It manifests in so many different ways. You get the kids who can’t string two words together but can rebuild a computer in two minutes flat. And you get the kids who are fully verbal but never learn to look both ways before crossing the street.

Here, I share my experiences with my son. Some parents will read these and nod along knowingly, identifying with every point. Others will wear a perplexed expression and say, “My child doesn’t do that.”

So, how did I know something was wrong?

1. Lack of speech or any other meaningful communication. By the time he was two, George was not talking. He had about thirty words in his vocabulary, but he was using fewer than ten of them in the right context. They were used as single words only, always for the purposes of requesting. Juice. Milk. Chee’s (Cheerios). He also did not have any kind of repertoire of meaningful gestures. He couldn’t point, and if he wanted something he did not know the word for, he would take my hand and move it in direction of the object he wanted.

2. No desire to play with other kids. When other kids his age were starting to play collaboratively with each other, George was still in parallel play mode. He did not object to the presence of other kids as long as he had the space to sit on his own and do his own thing. He did not see other people as potential playmates, but as functional beings: if he needed help to manipulate an object or separate stubborn Lego blocks, he would seek out an adult and shove the object into their hands. That was the extent of his interaction.

3. Not using toys for their intended purpose. Unlike some parents who say that their kids “became” autistic at a certain age, or after a certain event, I had a feeling fairly early on that there was something not quite right with George. One day, when he was at the age when babies are just learning to sit unsupported, I put him in the middle of the floor and propped him up with a nursing pillow. I surrounded him with all kinds of toys, just to see if he would respond to anything. There were stuffed animals, Lego’s of various sizes, fabric books, and a variety of planes, trains and automobiles. There was all kinds of stuff. He didn’t care for any of it. His attention wasn’t caught by the brightly coloured balls, and he didn’t make any attempt to grab at or swat any of the dangly things I tried to entice him with. He pushed a big red button on a train, and then grabbed a piece of string that was caught on my shirt and spent the next half-hour staring at it from different angles.

4. Prone to sensory overload. As a toddler, George hated going to the store. He would tolerate the grocery store for short amounts of time, but by the time I was at the checkout, he was usually having a meltdown of epic proportions. In those days before the autism diagnosis entered my orbit, I couldn’t understand what he was making such a fuss about. The only way for me to stop those meltdowns was by taking him out of the store. Looking back, I now realize that he was simply overwhelmed by everything that goes on in a store: fluorescent lights, lots of people, lots of displays, lots of sounds. Wal-Mart in particular set him off. Something about the checkout area sent him into a state of absolute panic.

5. Instinct. Ahhhh, there’s nothing quite like a mother’s gut feel. I have no idea if there is any science behind it, but mothers have this uncanny ability to just know there is something wrong with their child even though all looks fine and dandy to the outside world. This is why I always tell mothers that if they have a feeling something might be amiss with their child’s developmental progress, they should park themselves in their doctor’s office and insist on a referral for an assessment. There are doctors who will tell you to wait, that the range of development is broad, that boys reach milestones later than girls. Don’t listen to that guff. Don’t take no for answer. If you have to tell your doctor that you will sit in his office gathering dust until he gives you a referral, so be it. Listen to your instinct and don’t let anyone talk you into acting against it. I made that mistake and to this day, I bitterly regret the year of early intervention that my son missed as a result.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Autism Diagnosis, Developmental Delay, Early signs Tagged With: , , , , , , , , ,
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Emerging Into The World Of Books

May 30, 2012 By

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

My younger son James was just over a year old when his big brother George was diagnosed with autism. As we adjusted to our new reality and tried to figure out what we were supposed to do for George, we anxiously – almost obsessively – watched James for signs of a delay. We scoured developmental checklists and asked George’s speech therapist how James’ speech should be progressing.

Thanks to our family doctor’s initial refusal to give us a referral, George’s diagnosis came a full year after it should have. Every time I thought about the year of missed interventions, I felt sick. I did not want history to repeat itself: if James had autism or anything else, I wanted to know about it right away.

Fairly early on, it became apparent that we didn’t have anything to worry about, at least from an autism point of view. James’ speech development was slightly ahead of the curve. He hit the “terrible twos” right on target, and his interactive play skills showed up right when they should have.

When James started going to school, it felt kind of strange to just install him in a regular classroom instead of having to go to special ed review meetings and haggle over the wording in IEP’s (Individual Education Plans).

School was not without its challenges for James, though. In Ontario, the age cutoffs run on the calendar year. Children start Junior Kindergarten the year they turn four, whether they celebrate their birthdays in January or December.

James, being a Christmas Day baby, was very young when he started school. He was almost four months shy of his fourth birthday, by far the youngest and smallest kid in his class. He had not developed the coping skills that most of his classmates had, and for the first few weeks he cried almost every day.

The Kindergarten teacher was a kindly man who took James under his wing during that initial period of adjustment. He made sure the other kids weren’t too rough with him, and found imaginative ways to help James not only adapt to school, but to enjoy it. James adored the teacher, and by Halloween of that year, he looked forward to going to school every day.

Along with a number of his classmates, James suffered a setback when the teacher unexpectedly died just before Christmas of that year. He didn’t even really know what death meant, and he seemed to take it a bit personally that the teacher had “left” him.

But James is as resilient as the next kid, and he bounced back. By the time he reached the beginning of Grade 1 he was on track again.

Or was he?

Shortly after James started Grade 1, I noticed that his reading did not seem up to scratch. It’s not like I was expecting the kid to read War and Peace, but he was not mastering even the most basic of words. He was almost six and could do little beyond identifying the letters of the alphabet, whereas George had been reading fluently by the time he was four and probably would be able to read War and Peace.

James’ inability to read was not for lack of trying. The poor child tried gallantly to make sense of the strings of letters. I started wondering if he had dyslexia, like his dad. If this was the case, I wanted to know right away, knowing that early intervention would be the key to success.

I spoke to James’ teacher, who confirmed that he was reading below grade level.

“Let’s see where he’s at by the end of this school year,” she advised.

Immediately, I balked, remembering how George’s autism diagnosis had been delayed because of a doctor who said something very similar. I told the teacher why I was reluctant to procrastinate, and she was quick to reassure me.

“Trust me,” she said gently. “Many first-graders don’t really get reading until close to the end of the school year. And remember, if James had been born just a week later, he’d only be in Kindergarten right now.”

Where every fibre of my being had known that our family doctor was wrong about George, something told me to have faith in James’ teacher. And so I waited.

Within weeks of that conversation, James was starting to make progress – not in giant leaps, but in baby-steps. He was reading simple familiar words. It was highly encouraging, although he still got frustrated when he couldn’t figure out the longer words.

One day about two weeks ago, James’ teacher excitedly pulled my husband to one side when he picked James up from school.

“James flew through his spelling test today and he got them all right! I think something may have clicked!”

James himself was glowing from his accomplishment. All of a sudden, he had the confidence to really try to read. He started spelling words like Wednesday and vegetable. He developed a sudden interest in making words with George’s alphabetic fridge magnets (much to George’s chagrin).

James is still reading slightly below grade level, but it is increasingly likely that he will catch up by the time school lets out for the summer. His teacher was right on the money.

And I get to celebrate the accomplishments of not just one child, but two.

I feel like the luckiest, proudest mom on the planet.

(Photo credit: http://www.flickr.com/photos/bagelmouse/4700001481. This picture has a creative commons attribution license.)

Filed Under: 2012 Wordcount Blogathon, autism, Children, Dyslexia, Education, Progress, Reading, School, Special Needs Tagged With: , , , , , , , , , ,
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Mother Knows Best

April 17, 2012 By

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.)

Filed Under: autism, Autism Diagnosis, Autism Services, Doctor, Health Activist Writers Month Challenge, IBI, WEGO Health Tagged With: , , , , , , , ,
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Taking Care Of Mom: A Story Of Survival

March 29, 2012 By

I don’t usually take calls on my cell phone during meetings, least of all calls from numbers that I do not recognize.

Answer the phone, said a little voice in my head. It was the same little voice that has guided me many times in the past, the little voice that I always listen to, because when I don’t, I regret it.

I excused myself from the meeting and answered the phone.

To my surprise, it was the lady at the pharmacy down the road from my parents’ house. My mother had come in to the pharmacy to fill a prescription, and while she was there she had started complaining of abdominal pain. Could I please come and get her and take her to a doctor right away?

Bear in mind that this happened in a country that did not have 9-1-1. I was definitely a better and faster bet than the local ambulance service.

I made the fifteen-minute drive to the pharmacy in about eight minutes, only to find that my mother was not there.

“I’m sorry,” said the lady at the pharmacy. “We couldn’t wait. Your mother really needed to see the doctor immediately, so Michael drove her.”

I didn’t know who Michael was, but that was the least of my worries. I thanked the lady and drove to the doctor’s office. I was ushered into the consulting room immediately, and Michael – who turned out to be a kindly delivery man – was free to leave.

My mother was lying on the examination table writhing in pain. Her body was burning up with an ever-climbing fever and her face was the colour of paper. The doctor, who I had known for years and who had always, up until this moment, been completely unflappable, was trying everything she could. Although she was displaying an admirable calmness, I could see undercurrents of desperation.

An ambulance had been summonsed. It arrived and ferried my mother off to the hospital, with me following in my car.

At some point during all of this chaos I got in touch with my dad and my brother, who were out of town on separate business trips. While I took care of admission paperwork at the hospital, they were trying to get themselves onto last-minute flights home.

With the admin taken care of, all I could do was wait. I discovered that hospital waiting areas are every bit as bleak and depressing as movies make them out to be. After what felt like hours, the doctor came out to see me. The bad news was that my mother had an infection so severe that her kidneys were failing. The good news was that the fever was under control and the pain was being managed. I was allowed to go in to see my mother. She looked dreadful, but with the pain and fever taken care of, she was at least able to talk a little.

She was very afraid – and who wouldn’t be? I was terrified myself but trying hard not to show it. The doctor came back into the room and gave my mother some milky-looking medicine. She sipped the cloudy colloid as I gave her assurances that she was OK, she would be OK, the doctors were taking care of her.

I’m not sure when my dad and brother arrived. All I know is that at some point, they faded into the hustle and bustle as people entered and left the room, trying to get my mother’s body to work the way it was supposed to.

This story has a good ending. My mother recovered and thankfully she is in good health.

On some dreaded day – hopefully a long way in the future – I will lose my mom, because no-one lives forever.

But I am eternally grateful to whatever powers prevail that that day, Mom stayed with us.

For the IndieInk Writing Challenge this week, Cedar challenged me with “She sips the cloudy colloid. ” and I challenged Leo with “Tell a story that makes a lot of use of contrasts, like light/dark, big/small etc.”

Filed Under: Emergency, family, hospital, Illness, Indie Ink Writing Challenge, Medical, Mother Tagged With: , , , , , ,
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A Letter Of Thanks

October 13, 2011 By

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.

Filed Under: Doctor, Indie Ink Writing Challenge, Pregnancy, Pregnancy Loss Tagged With: , , , ,
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Out Of The Darkness: Overcoming Post-Partum Depression

July 4, 2011 By

This post was a hard one to write, even though the events described happened several years ago. It took me a number of days to get this all down, and it has taken another few days to actually decide whether or not to publish it. My hope in publishing this is that it will make a difference to somebody. Maybe you’re a new mom who is going through post-partum depression. Or perhaps you know a new mom who seems to be retreating into herself. If your life is touched in any way by post-partum depression, know that there are things that can be done. Talk to your friends and family, seek help from medical professionals. And whatever you do, don’t lose hope.

My younger son James was born at a tumultuous time in my life. I had lost my dad to cancer a year previously, and me and my husband were going through some challenging times in our life together. At around that time, we were also starting to realize that there was something wrong with George and we had started to experience the frustration of wrangling a referral out of our family doctor.

I sometimes wonder, when I look back, whether all of these factors led to the post-partum depression I went through. Or perhaps it would have happened anyway. This is an illness that can strike the most unlikely of victims.

I knew within a couple of days after giving birth that the utter bleakness I was feeling was more than a case of “baby blues”. What I had experienced with George two years previously – the mild sadness, the anxiety, the tendency to be emotionally weird – that was baby blues. What I was going through now was completely different.

On New Years Eve that year, when James was six days old, I was sitting in front of the TV nursing my newborn while I watched CNN coverage of festivities around the world. At about five to midnight, Gerard brought me a cup of tea, and as he set it down beside me, he asked in surprise, “Why are you crying?”

I was just as surprised as he was. I had not even noticed the floods of tears rolling silently down my cheeks.

Even though I was filled with this feeling of terrifying – emptiness – I did not initially label what I was experiencing with any name. The first time I thought of the term post-partum depression in relation to myself, James was about two months old. A replay of an old Oprah episode was on – the episode where Tom Cruise spouted forth about how there was no such thing as post-partum depression, and how all new moms could solve all of their problems by eating right and exercising.

What an idiot, I remember thinking. This thought was followed by the sudden light-bulb moment in which I realized that I was suffering from post-partum depression.

There was a good news and a bad news aspect to this discovery.

The good news was that I now had a name for what I was going through. I had something to Google, and sure enough, on every checklist I found, I was able to put checkmarks beside all but one or two of the signs and symptoms. I had a basis for research, and I felt some validation that I wasn’t simply going mad.

The bad news was that I too far down the path of post-partum depression to be able to actually do anything about it. Talking to someone – my doctor, my friends, or even my husband – would have taken energy. And that was something that I had in very short supply. Just getting through the day was an accomplishment. Once I had attended to the basic needs of my kids – feeding, diapering, bathing, dressing – there was nothing left over. No reserves of energy whatsoever.

And because I didn’t do anything about it, my illness got steadily worse and worse. I didn’t talk to anyone about it, and no-one recognized the signs. My friends and family saw me retreating further and further into myself, but they did not know why. They saw that the kids were obviously being taken care of, so they didn’t realize that there was anything to be concerned about.

Even when my depression was at its very worst, I was not suicidal in the sense of wanting to actively go out and kill myself (again, that would have taken energy that I just didn’t have), and I was never in danger of harming the kids. Their health, safety and happiness were my top priorities – my only priorities.

I did start to think about dying, though. I fantasized about what it would be like to die in a car accident, or to have a sudden heart attack, or to be shot during a bank robbery. I thought about being on a plane that had a bomb on it. What if I had some undiagnosed condition, and simply went to sleep one night and didn’t wake up?

My depression went untreated for over a year, and by then I honestly thought that I was lost forever. Right after George was diagosed with autism, I went to see my family doctor, who had received a copy of the diagnostic report. I was seeing the doctor about something unrelated – an old ankle injury was acting up – but he immediately picked up that there was something seriously wrong.

My doctor, who had been absolutely dismal at detecting signs of early developmental delay in George, was able to tell right away that I was going through a major depression. He put me on medication and insisted on seeing me once a week until I was out of the woods.

The pills were both good and bad for me. The bad part was that they made me feel angry. While I was taking them, I was mad at everyone and everything. Back then, I didn’t even have running as a stress coping mechanism, so the anger just sat there and frightened the living daylights out of me.

The good thing, though, was that the pills helped with the depression. I started feeling some energy again – even though the energy itself was negative, it was a start. Negative energy was better than the absolute empiness and desolation that I had been feeling for so long now.

And so gradually, I started finding my way back. With time, I rekindled my relationship with my husband, and I discovered the true joy of parenting. I went back to work and started to find my own identity again. I started running. Little buds of hope started to grow within me.

I found my way out of the darkness, and into love and light.

Filed Under: Help, Illness, Medical, parenting, Post-Partum Depression Tagged With: , , , , , , , , , , , , , , , , ,
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