Archives for November 2012

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Giving Away My Birthday

November 29, 2012 By

My 40th birthday

During the weeks leading up to my 40th birthday, I had a bit of a freak-out. It was the first year that I was really bothered by the idea of getting older. I has this sense of life having passed me by, and I started to regret wasted time, lost opportunities and mis-spent youth.

As it happened, turning 40 worked out really well for me. A few days after my birthday that year, I officially became a Canadian citizen. Approximately five minutes later, my now-husband got down on one knee and proposed to me, right there in front of the citizenship judge and about 100 fellow new Canadians. I went on to have one of the best years of my life – albeit one fraught with the stress of wedding planning.

With all of that excitement behind me, I am now at an age where my birthdays aren’t really a big deal. All they do, along with the increasing number of grey hairs on my head, is remind me that I’m getting older. So I am quite happy to give my birthday away to someone who can make the most of it.

This Saturday, that’s exactly what I’ll be doing.

My younger son James was born on Christmas Day, and in some ways that’s a bit of a rough deal, and we have to work very hard to make sure his birthday gets the recognition it deserves. We have his birthday parties a couple of weeks before Christmas, before everyone is sick to teeth of going to parties. This Saturday happened to be the best day for it this year, and by happy coincidence, that happens to be my birthday.

Someone asked me if I didn’t mind giving up my birthday to host a children’s party. My answer is that although I’m giving away my birthday, I am celebrating it in the best way possible, giving my boy the birthday party he deserves.

I cannot wait. It’s going to be the best birthday ever.

(Photo credit: Gerard Doyle)

 

Filed Under: Birthday, Celebration, Children, National Health Blog Post Month, party Tagged With: , , , , ,
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Autism: The Good, The Bad And The Ugly

November 28, 2012 By

When my firstborn son was first diagnosed with autism five years ago, the force of it all was like a kick in the head. I honestly did not know how I was going to live the rest of my life as an autism parent, especially with the doom-and-gloom picture that was presented to us by the diagnosing doctor.

But life has an uncanny way of continuing, no matter what. We adapt and survive, and sometimes we even manage to see the positives in a situation that is, by most people’s standards, less than ideal.

The Good

* Every moment of accomplishment is a cause for celebration. I have a true appreciation for what most people think are “the little things”.

* My son can problem-solve rings around the rest of us. His thinking is at times very effective while also being wayyyyy out of the box. It offers a whole new perspective on life.

* My two boys have a healthy amount of sibling rivalry going on, but they also have a great deal of love for each other. My younger son’s empathy and kindness toward his brother that has to be seen to be believed. It makes me well up with tears every time.

* Let’s face it, many kids with autism are computer geeks. And it’s very handy having a built-in computer geek.

* I believe that having a child with autism makes me a better and more patient parent.

* Kids with autism can have funny, quirky senses of humour that take you where you least expect to go.

* Hugs from kids with autism can be the absolute best.

The Bad

* When my child is trying with all his might to express something and doesn’t know how to, the look of frustration and desperation in his eyes is heartbreaking.

* Sometimes my younger son tells me that he wishes his brother didn’t have autism. There are no words to describe how that feels.

* Autism is unbelievably, phenomenally exhausting, and that’s just for me. I cannot imagine what it must sometimes be like for my son.

* There is a lot of frustration involved in advocating for my child in the school system. The vast majority of teachers are genuinely good and caring people who mean well, but a lot of them just don’t get it.

* I worry about my son’s future every single day. Will he ever be able to brush his teeth and take a shower independently? Will he ever learn to look both ways before crossing the street? Will he be bullied in high school? Will he be given the same opportunities as other kids? Will he be OK when, someday, I am no longer here?

The Ugly

* There are holes in the drywall from all the headbanging incidents. They are not pretty.

* We are frequently the targets of people who stare and say rude things. They are not pretty either.

* As much as I think that autism has made me a better parent, I am only human, and sometimes I lose it. Big-time. I slam things and scream like a banshee.

* Sometimes, I have to battle my son’s autism and my depression at the same time, and it’s such a battle. I teeter on the edge of these big black pits of despair, and it is absolutely terrifying.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Brothers, Children, family, National Health Blog Post Month, parenting, WEGO Health Tagged With: , , , , , , , , ,
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We Cannot Fix the World with a Band-Aid

November 27, 2012 By

Sometimes, when I watch the news and prowl around on news sites, I worry about the world my children are growing up in. I mean, they are happy and for the most part, healthy. And as much as I can see the wealth of opportunity out there for them, the fact is that as I write this, there are bitter conflicts going on in various parts of the world. We see people dying, economies tumbling, bombs and rockets destroying cities.

I don’t even have to look at other countries to see troubling things. All I have to do is look out of my own back window.

Today I am featured on World Moms Blog, talking about a senseless act of violence that happened in my neighbourhood and some of the challenges faced by the youth in our society. They are challenges that we cannot fix with a Band-Aid.

Check out my post, and while you’re there, please browse around and read some of the other great posts.

 

Filed Under: National Health Blog Post Month, World, World Moms Blog, Youth Tagged With: , , ,
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First, Do No Harm

November 26, 2012 By

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.)

Filed Under: Doctor, National Health Blog Post Month, WEGO Health Tagged With: , , , , ,
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What a Difference a Year Makes

November 25, 2012 By

My son doesn’t do lineups very well, and therefore we tend to avoid them wherever possible. Some would argue – completely within the realms of reason – that lining up is an essential life skill that we should expose him to more than we do. But like most parents of special needs kids, my husband and I already have enough on our plate without seeking out something to add to it.

Every year, though, we get the perfect opportunity to help him practice the skill of lining up, at the annual children’s Christmas party put on by my employers. It takes place at an indoor amusement park, and the day includes unlimited rides, gifts for the kids, and a picture with Santa. Bearing in mind that I work for a company that has 5000 employees at Head Office alone, the children’s Christmas party gets a little crowded.

Which means lineups everywhere, especially at Santa’s hangout spot.

In our first year at the Christmas party, we almost skipped the Santa picture because the line was so long, and as much as we want George to practice the skill, we have to be reasonable about it. But James would have been so disappointed to miss Santa. We didn’t want George to have a meltdown that could give him permanent negative associations with this place, but we also didn’t want James to miss out on a typical childhood experience.

In the end, we didn’t have to choose. The volunteers were more than happy to let us skip the lineup and go straight to Santa, and they have done this for us ever since. This small but very significant act of kindness is something that makes this day truly special for us.

We still have to line up for the rides, and in years gone by this has created a bit of a problem for George, but the lineups have moved just fast enough to avoid any potential explosions.

Yesterday we had the best children’s Christmas party ever. As always, we were allowed to skip the Santa line and for the first time, everyone was looking directly at the camera for the picture. Our first stop after Santa was the train ride, and from there we went around the whole place and the kids went on every single ride. There were lineups at all of them, and in some cases the wait was quite lengthy.

But George showed a kind of maturity we have not seen before, and he coped remarkably well with the crowds and the waiting. The only time he showed any kind of anxiety was during the wait for the bumper cars, which made even me feel claustrophobic.

We all had a fantastic time, made even better by the new signs of growth in George.

Sometimes time really does make a difference.

 

Filed Under: autism, Christmas, Lineups, National Health Blog Post Month, Santa Claus, WEGO Health Tagged With: , , , , , ,
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I Don’t Have a Sweet Tooth But…

November 24, 2012 By

I am not really a desserts person. I have the odd sugar craving, of course, and I am well aware that women need a certain amount of chocolate to help them through that time of the month, but in general, I don’t have too much difficulty when it comes to bypassing cakes and puddings and other sweet things.

Until I see cheesecake.

When I see cheesecake, all sense of reason completely disappears. It is the one sweet treat that I absolutely cannot resist. And since I’m on this new healthy eating Body for Life thing, that’s a bit of a problem. Cheesecake doesn’t really jive with a healthy nutrition plan.

Or does it?

Since I started the Body for Life program three weeks ago, I’ve been on the prowl for healthy recipes, and I actually found one for strawberry cheesecake, easily adaptable to be any kind of cheesecake.

A cheesecake that can be part of a healthy eating plan? What could be better?

I adapted the recipe a little and made the cheesecake, and I was very surprised at how well it turned out. I got onto Facebook and boasted extensively about the cheesecake, and now people are asking for the recipe. I cannot post the original recipe, but here is my version:

Ingredients:

Crust

1 cup graham cracker crumbs

1/4 cup oat bran

1/8 cup fat-free cream cheese

1/3 cup water

Cheesecake

2 cups low fat cottage cheese

1/3 package powdered instant pudding, any flavour, depending on what you feel like

1/3 cup fat-free cream cheese

If you’re feeling fruity, a few strawberries or a banana

Instructions

Soften the cream cheese for the crust in the microwave, and then mix all crust ingredients together. Coat a 9″ pie pan with non-stick cooking spray and then press the crust into the bottom and sides of the pan. The crust kept sticking to my hands while I was trying to work with it until I put a tiny bit of cooking spray onto my hands.

Put the cream cheese for the cheesecake into a blender along with the cottage cheese, and blend until the mixture is smooth and creamy. Gradually blend in the instant pudding mix, tasting as you go. If you’re adding fruit, slice it up and blend it in gradually, again tasting as you go.

If you want to add a bit of protein, blend a bit of vanilla-flavoured protein powder into the cheesecake mix. Be careful, though. Protein powders can be immensely overpowering if you’re not used to them, so if in doubt, skip the protein powder or use just a little bit.

Pour the mixture into your crusted pan. Throw the whole lot into the fridge, and it should be ready to eat in an hour or so.

Final word: this cheesecake goes really well with a glass of Merlot.

(Photo credit: gravel72. This picture has a creative commons attribution license.)

Filed Under: Cheesecake, National Health Blog Post Month, Recipe, WEGO Health Tagged With: , , ,
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Santa and Autism: A Special Brand of Magic

November 23, 2012 By

This morning I was faced with a minor dilemma, brought on by the fact that it was Pajamas and Stuffed Toy day at my son’s school. If it had been my younger son – the one who doesn’t have autism – it wouldn’t have been a problem. But since this is my older son we’re talking about, I had to make a choice. Do I encourage him to take part even though the idea of wearing pajamas instead of clothes to school could make him feel seriously disoriented and possibly distressed? Or do I let him just wear clothes even though that would mean yet another thing that sets him apart from the typical kids in his school?

See? Dilemma.

As an autism parent, I constantly have to make tradeoffs of this nature on behalf of my child. On the one hand, I want him to have as many “typical kid” experiences as possible, but on the other hand, I don’t want to cause him to be upset.

It always come down to the idea of choosing my battles, and by now I know that I should only pick the battles that really matter. And let’s face it – wearing pajamas to school does not exactly count as an essential life skill, especially when he’s part of a class of special ed kids who probably wouldn’t be into the whole pajama thing either.

And so I decided to let him exercise his preference in the only way he knows how. I would dress him in a clean pair of pajamas and then see what happened. And what happened was that he promptly crawled back into bed. It was only when he realized that he was actually going to school that he started to resist the pajamas idea. Within seconds the pajamas were coming off and George was rummaging around for clothes to wear.

Surprisingly, though, he did want to take a stuffed toy. I say “surprisingly” because George has never really been into stuffed toys. This is a kid who sleeps with about a dozen Mr. Potato Heads and a pineapple. But not only did he want a stuffed toy today, he wanted two. In an intriguing fusion of holidays, he selected an Easter bunny and a stuffed Santa.

I was sure he’d lose interest in the whole thing by the time the school bus showed up, but he went off to school with Santa and the bunny, and by all accounts he had a great day.

Friday is always Show & Tell day in George’s classroom, and from time to time we send him in with something and his teacher gets him to “participate”. In a dramatic break with tradition today, he independently – independently! –  joined the Show & Tell circle and proudly showed off his Santa.

This moment of progress proves to me that although Santa is not real, he is capable of producing magic.

(Photo credit: Kirsten Doyle)

 

Filed Under: autism, Choices, Easter Bunny, National Health Blog Post Month, Pajamas, parenting, Santa Claus, School, WEGO Health Tagged With: , , , , , ,
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Vaccines and Autism: Where Do I Stand?

November 22, 2012 By

In yesterday’s blog post, I made a remark about the fact that I do not believe there is a link between vaccines and autism. One of my readers took me to task (very nicely and respectfully, it has to be said) for making blanket statements that could potentially alienate part of the autism community that I try so hard to reach.

I did clarify what I meant with the person concerned, and it all ended on a good note, but the incident made me think that this is a topic I should cover here on my blog.

The subject of vaccines is a very touchy one for autism parents on both sides of the debate, and it’s one that can create a lot of division. Each camp accuses people in the other camp of being disrespectful toward them and their views, and of trying to shove their opinions down everyone else’s throat. It’s really kind of sad, because at the end of day all of us are autism parents who are doing the best we can for our kids. Instead of being a united community working together, we sometimes find ourselves divided into these factions that argue with each other.

This debate is like any other. There are those who are almost fanatical about their opinions and won’t even consider any other possibilities. And there are those – like the person who contacted me yesterday – who want their opinions to be respected but can peacefully coexist and have meaningful dialogue with those who think otherwise.

Until now, I have avoided being too vocal about my own stance on this whole issue. I am an introvert by nature, and I dislike rocking the boat. I don’t want to hurt anyone’s feelings or make people mad at me. So when it comes to controversial topics, my usual approach is to be as quiet as possible.

As an advocate for my child, though, I sometimes have to go well beyond my comfort zone. So I will step out of my zone for a moment to make the following statement: I do not believe that vaccines are responsible for the autism epidemic.

I am not trying to say that it is not possible for vaccines to cause damage to a child. I’m not suggesting it would never happen, and I would never presume to tell another parent what did and did not cause their child’s autism. I’m also not saying that vaccines don’t come with their risks.

I am simply saying that I don’t think the dramatic rise in autism over the last 20 years can be blamed on vaccines.

Proponents of both arguments could produce pages and pages of research in support of their views. To me, the salient information can be summed up as follows:

* The research that sparked this whole debate, done by one Andrew Wakefield of the United Kingdom, has been widely discredited for a number of reasons – two of which are that the research was inherently flawed and that there were issues relating to conflict of interest.

* After Wakefield’s paper was published, areas in several countries reported a dramatic drop in the use of the MMR vaccine. All of these places saw a sharp rise in measles and mumps, but there was no change to the rate at which kids were being diagnosed with autism.

* When the rate of vaccinations in these areas started to increase again, there was no change to the rate at which kids were being diagnosed with autism.

* The leaps made in the sequencing of the human genome have opened all kinds of doors to genetics research, and there an increasing body of evidence linking autism to genetics.

Having said all of this, I want to state the following:

* I believe (and bear with me here – I am not a scientist) that in some children, vaccines can interact with genetics or with other environmental factors to result in an outcome of autism.

* Whether or not you believe in the vaccine-autism link, vaccines are a form of medical treatment, and it’s up to everyone to do their homework, just as they would for anything else, and then decide whether vaccines are the right choice for their kids.

I am not trying to change anyone’s mind with this post. I am simply stating my views that are naturally tinted with my own experience (namely, that my child came out of the womb with autism), and I fully respect that other people have had different experiences that lead to them having different opinions.

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

Filed Under: autism, National Health Blog Post Month, Vaccines, WEGO Health Tagged With: , , , , , , ,
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Autism: A Question of Toothpaste

November 21, 2012 By

Any autism parent will tell you that autism can be really time-consuming. Apart from the time spent at assessments and IEP meetings, we have to devote precious minutes to stuff like clearing up autism-related messes, dealing with meltdowns, and having arguments with people who think we’re terrible mothers because we believe the vaccine-autism theory is a load of guff and choose to keep our kids’ vaccinations up to date.

One of the biggest uses of our time is that used for teaching our kids how to do stuff that comes naturally to typically developing kids. I have told the story of how I worked with George for up to an hour a day for eleven months, just to teach him how to point. Make no mistake – the day he pointed independently for the first time made all of those hours totally worthwhile and I still well up like a leaky tap just thinking about it, but there’s no getting away from the fact that it took an enormous amount of time.

At the Geneva Centre for Autism symposium that I recently attended, presenter Peter Gerhard said something that made me stop and think. We’re so focused on teaching stuff to our kids that we don’t always stop to think about whether it’s really a necessary skill. Therefore we may, in some instances, be inadvertently wasting time that could be better spent elsewhere.

Gerhard suggests that when we’re deciding on what to teach our kids, we ask ourselves the following question:

If my child does not learn this skill, will someone else have to do it for him?

For example, I am trying to teach George to brush his teeth independently, and it is proving to be extremely difficult. Where my six-year-old just runs to the bathroom and brushes his teeth when he’s told to, George still needs hand-on-hand assistance and a great deal of coaxing.

But if I don’t help George with his tooth-brushing, his teeth will just never get brushed. Anyone would agree that this is an essential skill for George to learn. If he doesn’t brush his teeth, someone else will have to do it for him.

However, there is a step within the tooth-brushing task that I am rethinking, and that is the kind of toothpaste I use. It’s a brand of kids’ toothpaste that comes in a small squeeze-bottle rather than a tube. The thing is, you have to squeeze the bottle fairly hard to get anything out of it. The toothpaste was recommended to me by an O.T. ages ago, because squeezing the bottle would help strengthen George’s hands and thus contribute to his fine motor skills.

On the face of it, that seems like a pretty sound recommendation. The only trouble is that George hates the toothpaste itself. This in itself is not a problem. In fact, George’s dislike for toothpaste is a key element that I count on, because it motivates him to spit it out at the appropriate time instead of swallowing it. George learned how to spit because of the dreaded toothpaste.

The need to spend time squeezing the bottle creates a sense of frustration and dread for George, because he has to work so hard just to get a toothbrush full of yucky goo shoved into his mouth.

That’s not the greatest motivation, is it? And it’s probably one reason that George resists tooth-brushing time every single night.

If George doesn’t learn how to squeeze toothpaste out of a ridiculously hard-to-squeeze bottle, will someone have to do it for him?

I’m thinking probably not. George can just choose from the multitude of normal toothpastes in the grocery store and get his fine motor practice elsewhere, perhaps by doing a task he actually likes.

I will always spend a lot of time working with George, because he’s my child and I want what’s best for him, and because the moments of accomplishment make it so worthwhile.

But I will also try and really evaluate whether I am working with him on the stuff that he actually needs.

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

Filed Under: autism, Skills, Teaching, Time Tagged With: , , , , , , ,
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Guest Post: If I Look so Healthy, Why do I Feel so Rotten?

November 19, 2012 By

I met Simona Rinfreschi through the World Moms Blog community, and it quickly became apparent that we had a lot in common. We share many character traits and have had similar life experiences, and there is a good possibility that our paths crossed over twenty years ago when we both attended the same university, majoring in the same subject. As I’ve gotten to know Simona, she has shared with me some of her medical challenges, and she has graciously agreed to write a guest post for me today.

Isn’t it dreadful that, recently, I found myself praying that they would find something wrong with me?
I can see you shaking your heads.  Why on earth would you want an abnormal blood test result?  In my case, it’s simply because I’ve been battling severe pain and fatigue for 8 years already and so far nobody has really been able to help me!
My symptoms, combined with an absence of positive test results,has led to a diagnosis of Fibromyalgia. The medical dictionary definition of Fibromyalgia is:  ” a neurosensory disorder characterized by widespread muscle pain, joint stiffness, and fatigue. The condition is chronic (ongoing), but pain comes and goes and moves about the body. The disorder is often misdiagnosed or unrecognized and is often complicated by mood and anxiety disorders.”
I’ve encountered two main types of medical professionals so far, those who think that Fibromyalgia doesn’t really exist and is a psychosomatic manifestation of my clinical depression,
(Definition of psychosomatic:
1. Of or relating to a disorder having physical symptoms but originating from mental or emotional causes.
2. Relating to or concerned with the influence of the mind on the body, and the body on the mind, especially with respect to disease)
and those who are happy to have given me a “diagnosis” even if they have no clue how to help me!
I actually find myself getting angry when they tell me I’m depressed, because I’m actually not depressed right now!  I did go through severe episodes of clinical depression as a teen and young woman, as well as post-partum depression following the birth of my son.  That’s how I know that this pain and fatigue is not caused by depression! I can remember quite clearly how I felt when I was depressed and I don’t feel at all like that now!
Ironically, psychologically, I’ve never been better!  Around 3 years ago I was hospitalised for 4 weeks in a psychiatric hospital. There I learnt how to get out of the pit of depression once and for all!
In the last 8 years I have spent a small fortune on medicines, blood &  other diagnostic tests, alternative therapies, supplements and consultations with a wide array of “specialists” including 2 psychiatrists, all to no avail!
I now find myself with a dilemma.  Do I simply accept that I have to live with this pain and fatigue for the rest of my life, or do I keep fighting and searching for a way to feel better?
Depending on the kind of day I’m having, I’m either willing to keep searching or I tell myself that it is what it is, and leave it at that!
So, this is how I’m dealing with my Fibromyalgia at the moment:
  •  I’ve come off most of my chronic meds (under medical supervision) because (since they weren’t really helping) I thought I’d save myself some money!
  • I’ve sent my medical records to yet another doctor for review, because it is possible to have Fibromyalgia and something else too!
  • I focus every day on all the things that I am grateful for
  • I do my best to listen to my body and eat what I feel I need to, rest whenever I can etc.
  • Ensure I have a good laugh at least a couple of times a day (luckily I have an amazing family & friends with a great sense of humour to help me with that!)
Like everything else in life, the diagnosis of a chronic disease or disorder per se isn’t what counts.  What counts is how you choose to live with it.  I know a couple of Fibromyalgia sufferers who don’t work at all and who are all “woe is me”.  I’d rather laugh …  and have my friends and family laugh right along with me!
Do you suffer from a disease or disorder which makes you appear perfectly healthy even though you’re not?  How do you deal with the fact that you get accused of being “lazy” or “faking” it because people can’t see the pain you’re in?
This is an original guest post by Mamma Simona (a regular contributor to World Moms Blog) who is the proud mom of two terrific teens.  She also shares her Cape Town home with a super supportive husband, 2 cats and 2 dogs. For more of Simona’s most intimate and candid thoughts,  feel free to check out her alter ego, Phoenix, at  www.blogbythephoenix.com
(Photo credit: Simona Rinfreschi)
Filed Under: Guest Posts, health, Illness, Mystery Illness, National Health Blog Post Month, Simona Rinfreschi, WEGO Health Tagged With: , , , , ,
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