post

Making Peace With A Tough Choice

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

When I went for my six-week postpartum checkup after George was born, my OBGYN raised the question of whether my husband and I were going to have more children. We stared at each other in a perplexed kind of way, shrugged our shoulders and said, “I dunno.”

It was a question that we had honestly given no thought to. George had been an extremely welcome surprise, but he had been a surprise nonetheless. Family planning hadn’t exactly been a key feature in our lives.

When we did talk about it – this topic that we had simply never thought to discuss – we discovered that both of us had always envisaged life with three children. This was good. I thought it was a positive sign that I was with a man who wanted the same number of children as me.

When we decided to try for Baby Number Two, I got very serious about it. I downloaded those free online calendars that tell you what the best dates are to – well, you know. I was going to chart my cycles and keep track of my temperature to tell when I was ovulating.

As it happened, I didn’t need any of that stuff. Just six weeks after we decided we were officially trying to conceive, we got a big fat plus sign on the pregnancy test. Several months after that, James came barreling his way into the world like a cannonball.

Two down, one to go.

By the time we were ready to try for Baby Number Three, though, things had gotten complicated. James was almost two, and George, who was four, had been diagnosed with autism. We were recalibrating our lives after discovering that we were special needs parents, and I was still trying to find my way out of the terrible darkness of postpartum depression.

What if our third child had autism? Would it be fair for us, knowing that we weren’t going to be around forever, to leave James with the responsibility of having two siblings with special needs?

We were so conflicted about whether or not to have another child that we went to see a geneticist. The DNA testing did not confirm a genetic link to autism, but it did not rule it out either. The geneticist turned to the very detailed questionnaires that we had completed. Based on my own developmental history, which was almost identical to George’s, it seemed not only possible but likely that I was on the spectrum myself.

The geneticist advised that in spite of the inconclusive DNA test results, there was reason to believe that George’s autism might be genetically based. We were looking at a 12-15% probability that any other child we had would have autism.

This created a problem. My husband and I found ourselves on opposite sides of the fence. He was very concerned about the 15% probability. I, on the other hand, tried to focus on the other percentage: the 85% probability that the child we had would not have autism.

We flip-flopped back and forth for several months, torturing ourselves with possibilities and what-ifs. We were torn between doing what was right for the kids we already had, and doing what both of us had always wanted. We really could have done with a crystal ball at around that time.

In the end, it was more than George’s autism that made the decision for us. I was already at an age where there’s a higher risk of having a baby with Downs Syndrome. I was finally starting to see a pinprick of light at the end of the postpartum depression tunnel. We had just successfully potty-trained James, and I wasn’t sure that I wanted to start a new two-year cycle of diapering.

Most importantly, I realized that I didn’t need more children. The two that I had were absolutely perfect. When I came home from work at the end of each day and hugged them, I felt complete. I did not feel that there was piece missing – a piece that would be filled by another child.

When I am sitting on the floor in my living room, with one kid on my lap and the other jumping on my back, I know that we made the right choice. I know that my family is whole.

Have you had to wrestle with the question of whether to have more children? What was the deciding factor for you?

(Photo credit: http://www.flickr.com/photos/joehowell/2282930348/. This picture has a creative commons attribution license.)

post

Why Autism?

“Why do you think he has autism?”

This question is posed to me quite a lot by friends and strangers alike, people who for the most part intend no malice, but are genuinely curious about the origins of George’s autism.

That they are asking the question at all is something that I see as a positive sign. It tells me that increasingly, people are wanting to be educated about autism instead of blindly believing every tidbit of information – right or wrong – that is thrown their way.

Over the years, I have done research on a variety of theories.

Was it vaccines? No, I don’t believe it was. Deep down, I knew from the time George was a tiny baby that he was not on the trajectory of “typical” development. I don’t buy into the dietary theory either, for the same reason. George was exclusively breast-fed for four months, and by then I was seeing some little signs that something was not quite right.

No, whatever happened within George’s brain to result in his autism, it was a done deal by the time he came out of the womb.

Even with that knowledge, the title of Primary Cause is wide open. I have read a couple of recent studies suggesting that environmental factors in utero could have more of an effect than previously believed. As if moms of children with autism didn’t have enough guilt on their shoulders already. But that is neither here nor there.

When I was expecting George, I did everything that was considered by pregnancy gurus to be “right”. I ate lots of leafy greens and took my prenatal vitamins every day. I ate lean protein and avoided foods with a high fat content. Accustomed to eggs “over easy”, I ensured that my eggs were fully cooked, and I did not touch deli meat or anything else that could be a potential listeria risk. I did not touch a drop of alcohol, I stayed away from places where I might be exposed to second-hand smoke, and my body pretty much bullied me (through the magic of the laughably known “morning sickness”) into kicking caffeine to the kerb. I went to all of my OB/GYN appointments and followed the advice of my doctor. I did not take so much as a headache pill through my entire pregnancy. The only tablets going into my mouth were vitamins and Tums.

I don’t think I could have created a better environment for my baby if you had paid me a million bucks. Of course, there is the possibility that fifty years from now, someone will prove that some obscure enzyme in, say, oranges, has been linked to autism. But I think it is safe to say that the prenatal environment is an unlikely candidate for the cause of George’s autism.

Leaving aside other environmental factors like air pollution, there are two other possibilities: genetics, or the circumstances surrounding the birth itself. Or maybe a combination of the two.

When I was a child, I was developmentally delayed. I didn’t talk until I was five, and I had some motor skill delays. My body was physically capable of doing anything my peers could do, but the communication between my brain and my muscles was out of synch. It was clear – especially in the early years – that I had some kind of learning disability, although I was never formally diagnosed with anything. As I navigated my way through childhood and adolescence, I was able to compensate for my learning difficulties by simply thinking in a different way and leveraging areas that I was strong in. But as my academic performance got better and better, my social awkwardness and anxiety among people became more and more apparent.

To this day, I suffer from social anxiety, although in general, I have found ways to adapt and mask it so that people don’t really notice. I’m not so much a stickler for routine, but once plans are made I get very uncomfortable – almost panicky and kind of, well, spectrummy – if they are changed. Although I am now fully verbal – sometimes, downright talkative – there are times, usually when I’m stressed – when I lose the ability to communicate through speech. It’s as if the words get lost somewhere between my brain and my mouth.

Am I on the autism spectrum? I don’t know. I have never been for screening, and frankly, I don’t really see the point. But if I were to learn that I have Aspergers, I would not a bit surprised. When I look at the way George has evolved through his early childhood, and the way he is at this point in his life, I do see a lot of parallels with my own early years. So, genetics? It’s a strong possibility.

The other possibility is that something happened to George’s brain while he was being born. For the most part, my labour was pretty standard. Everything happened more or less when the Medicals said it would. When I was in the thick of contractions, I heard someone use the word “textbook”. When the time came to push, though, the going suddenly got a lot tougher. Even though the baby was perfectly positioned for birth, no matter how hard I pushed, nothing budged. The Medicals kept telling me to push harder, push harder, but I just couldn’t do it. After what felt like an eternity but was probably only a couple of minutes, the Medicals gave me an episiotomy (if you don’t know what that is, look it up, because I ain’t describing it here). Once that was done, I gave one more almighty push, and an eternal second later, I was rewarded by the sound of a baby crying.

Here’s the thing, though. While I was pushing to no avail, the baby’s heartbeat – usually in a range of 130-150 beats per minute – dipped to below 40 beats per minute. Only for a couple of seconds, mind. Like a momentary blip in the radar. But could those couple of seconds have been enough to alter the wiring in my baby’s brain?

In the end, I suppose it doesn’t really matter. George has autism, and knowing the cause with crystal clarity would not change that.

No matter what the cause, George has autism, and I love every inch of him for who he is.

(Photo credit: http://www.flickr.com/photos/macbeck/4146730230/)

post

Spectrum Musings

Sometimes I wonder if George got his autism from me.

I don’t say that with any sense of guilt. If he did get it from me, I don’t feel bad about it. After all, I can hardly be held responsible for my genetic composition. It’s not as if I had any control over what DNA I landed up with.

I wonder about this question, though, from a purely scientific, curious point of view. Because although I’ve never been screened for it, it would not surprise me one bit if I were to learn that I am on the autism spectrum.

When I was a baby, I cried. I know, that sounds like a ridiculous statement. Of course I cried. That’s what babies do. In my case, however, I couldn’t be soothed. My poor Mom would change me, feed me, rock me, try to get me to sleep. No matter what she did, I cried relentlessly, for hours at a time, for no apparent medical reason. Mom surmised that maybe I was reacting to a feeling of  rejection after my birth mother had given me up for adoption.

Adoptions in those days were closed, and no information was exchanged between the birth mother and the adoptive parents. My Mom knew nothing about where I had come from. She told me in later years that she just assumed there was some factor she did not know about that was causing all this angst in me.

When I was a very young child, it became apparent that I had notable developmental delays. I was a very late talker, and did not show signs of functional speech until the age of five. It took me a lot longer than my peers to learn how to read (although it must be said, once I did learn, it was like a floodgate had opened, and I read everything I could get my hands on).

At the same time, I had issues with motor skills. I was uncoordinated, and stubbed my toes a lot. I did not have the strength to hold a pen, and I didn’t even know, until some species of therapist did some testing on me, that I was left-handed. My hand-eye coordinatin was nowhere and I had to be taught it while other kids seemed to just pick up on it naturally.

There are certain sensory things that I find hard to handle. Flickering lights (although, to be fair, that would probably drive most people batty). The textures of certain foods. Clothing labels have the ability to make me want to chew off my own arm in frustration. When Gerard has the TV on too loud, I actually want to scream. Hearing too many sounds from too many different sources (TV, dishwasher, telephone, whatever) invokes a feeling of intense anxiety.

When I’m stressed I rock back and forth. I find it calming, I find that it can sometimes stop the stressful feeling from escalating.

One of the most telling factors in my musings, however, is my social awkwardness. I have had this problem throughout my life. As I get more comfortable with specific people, my social ineptness becomes less apparent, and I work hard to hide overcome it in my day-to-day life.

Social gatherings can be excruciating for me. High school was just torture – I so badly wanted to fit in, but I couldn’t be social enough and my attempts came across as awkward and embarrassing. The only person at school who I felt completely comfortable with was my friend Jenny, who remains my best friend to this day.

There are certain social situations that make me feel even more uncomfortable: conflict, meeting new people, situations where I unexpectedly have to make small talk, anything to do with telephones.

Gerard has remarked several times that I seem to have a special connection with George. When he is having a meltdown, I seem to have the ability to just know what to do, to know what he needs. It can take a long time to calm him down, but in most cases, I can just know – without explaining how I know – how he needs to be spoken to, held, comforted, soothed.

And I wonder why this is.

Is it a normal motherly instinct?

Or do I, in some ways, inhabit the same world George does?

(Photo credit: http://www.flickr.com/photos/53416677@N08/4972850923)