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Health Activist Writers Month Challenge

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Happy April Fools Day! This day means two things. First, we all get to play pranks on our families and co-workers. And second, it is the first day of the Health Activist Writers Month Challenge. This is a fancy way of saying that for the month of April, you will be seeing one blog post from me every day, as I try to raise awareness for the causes that matter to me. I participated in this challenge last year – miraculously, without missing a single day, and I had such a lot of fun with it that signing up again this year was not even a question.

Why am I doing this? With everything that I already have on my plate – full-time job, commute from hell, finances for the husband’s business, school, running, parenting, and a million other things – how can I commit to writing a blog post every single day? I mean, that’s a lot of effort.

I do it because I love it, and because I am passionate about the causes I write about. I have a genuine desire to make a difference through the stories I tell. I want parents whose kids have just been diagnosed with autism to know that everything will be OK. Sure, the definition of “OK” might change, but there is always hope. I want people to know that the kid they saw having a meltdown in Wal-Mart wasn’t being a spoiled brat. He was simply having immense difficulty processing all of the sensory inputs that were going on. I want other moms in my position – moms who are juggling a lot of stuff including bouts of mental illness – that it can be done, and that they should take some time out to take care of themselves.

Sometimes I simply want people to celebrate my kids’ accomplishments with me, or I want them to share my outrage at something, well, outrageous, or I just want them to have a bit of a laugh.

Yes, it’s a time commitment, but it’s one that I am more than happy to make. Because sharing a little slice of my life through this blog is my passion.

I am excited to be taking part in this challenge, and I am excited to read the awesome posts that my fellow health activists will put up.

You too can sign up for this challenge. Just visit info.wegohealth.com/hawmc and fill in your information!

What are the health concerns you care about the most?

 

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Autism: The Good, The Bad And The Ugly

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)

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First, Do No Harm

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

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

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

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

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

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

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

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

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

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

What advice would you give to a new doctor?

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

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What a Difference a Year Makes

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.

 

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I Don’t Have a Sweet Tooth But…

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.)

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Santa and Autism: A Special Brand of Magic

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)

 

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Vaccines and Autism: Where Do I Stand?

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.)

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Guest Post: If I Look so Healthy, Why do I Feel so Rotten?

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)
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George and the Big Wide World

Today’s prompt in the National Health Blog Post Month challenge is to write a post inspired by a picture or a video.

“Peep And The Big Wide World” by George

One of George’s favourite shows is a charming little cartoon called Peep And The Big Wide World. It’s about a chicken (Peep), a robin (Chirp) and a duck (Quack) who are best of friends and make all kinds of discoveries about the world. It is entertaining – even to an old fogie like me – but it is also educational.

In one of the episodes, Chirp and Quack find that they have been inadvertently joined together by a rope, so wherever one goes, the other has to go. This presents a conflict, because Chirp wants to sit in a tree, and Quack wants to float in his pond. They resolve the problem by taking turns to pick the activities of the day.

When George first started tying dressing gown cords around people’s ankles, I didn’t immediately make the connection. It was only when he tied one end of the cord to my ankle and the other end to his own ankle that I realized that he was role playing the scene in the show.

For a kid with autism, this is huge. I mean, HUGE. Pretend play is a fairly complex skill, and because it is socially based, it is one that autistics tend to have quite a lot of trouble with.

And so I encouraged this play and made attempts to expand on it. Before long, George was playing “turtle” by crawling around with his T-shirt pulled down over his knees, and he was being a dog, crawling around going “Arf!” It was a lot of fun witnessing this evolution in George’s play skills.

What really got me excited was the picture he drew. Up until this point, I didn’t think his fine motor skills were good enough for him to draw an actual picture. And here he was, coming up with a clear representation of the scene from Peep. This is the first real picture George drew.

This is all such a massive leap for George. It shows a new level of social awareness, it shows imagination, and it shows intent.

The best part is how proud George was of his picture. As well he should be.

(Photo of George’s artwork taken by Kirsten Doyle)

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Teen Series Part 5: Teenage Life

Over the last month or so, we have heard from three teenagers about how they think, what their dreams are, and what they want us “old” people to know about them. I am wrapping up the series the same way I started it: with South African teen Alex Zeeman. Today, she gives us a candid view of life as a teenager. Here are her words, uncut and unedited.

People think that the life of a teenager is easy, that we have no worries or, that we care not what the world thinks of us, that we’re unscathed by the world around us ……..

But the truth is that we, you, me and all the teens in the world feel, think and care what the world thinks of us.

Sure you get the rebels, people pleasers, the nerds, geeks and freaks, the jocks, athletes and bullies you get the popular and even little miss OR mister perfects …… people think that teen life is the PINICLE, the ABSOLUTE best stage in a humans life ……

But they forget, they forget what it was like to be mocked, bullied and ridiculed just because you had a higher IQ than those around you or what it was like to have no say in the way your life progressed or even what it was like to be everyone’s favorite, some may think that being popular is easy, sure for some it is, some thrive in the adoration of others …..

But to me, I personally think that “POPULARITY” is just too much hassle. Why you ask well, the answer is simple you always have to watch what you say you must walk this way, and wear that …… to be “PERFECT” to me means to basically be a robot, the way people look at you, talk to you and even interact with you dictates the way you look, act, speak, walk and even think ….. I mean teenage life is hard enough as it is why burden your-self with the added responsibility of being everybodys  favorite or by lashing out at people who just want to help you ….. There is too much in life that we have to worry about …. WHY ………

If every one tells us that we are kids, do we worry about what we’re going to be studying in 3, 4, 5 years we’re young but we act like were 40 ….. If we’re kids we should act like it we should have FUN, we should laugh and cry and do STUPID, STUPID things with our friends because the role of a child, of a teen is TO BE STUPID!!!!!

So if you want to be 20 when your 16 then act it, wear the shortest skirts you can find, sleep around with whomever looks at you the right way but DON’T get mad at the world when your decisions get you hurt, don’t lash out when you find yourself in a dark, dark hole with no escape because if you want to act older, then you should be able to face the problems, worries and stress of an older life ……..

Teens should be teens.

We are not children but neither are we adults so we either think like a child and so are usually categorized as such or we think like an adult and are categorized as such …… But we NEVER think as a teen you shouldn’t worry about the future ‘cause that’s what parents are for …. You shouldn’t worry about the past ‘because that’s what the dead are for ….. You shouldn’t even worry about the present ‘cause then you’ll never LIVE!!!!!

So think about what I wrote comment about it, and spread it ‘because it might not help you but maybe it’ll help someone else…….

Sincerely yours
A.E.Zeeman

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