Tag Archives | treatments

A Road Map for Autism

By on September 13, 2012 in Autism, Parenting

From the first moment a child is diagnosed with autism, parents find themselves catapulted into a chaotic world of therapies, alternative treatments, and doctor appointments. We are left to fend for ourselves as snake oil salesmen try to take advantage, book authors offer conflicting points of view, and everyone from the family physician to Great Aunt Hilda offer their opinions on our children and our parenting. Sometimes these opinions are informed, and many times they are not. We often exhaust ourselves running through what feels like a rat maze, in search of answers or at least some advice that actually helps. We develop our own opinions, fend off curious strangers in the grocery store, and probably find ourselves engaged, on several occasions, in World War III via internet message boards.

 

All of this happens because we don’t have definitive proof of anything. What causes autism? What is the best method of treatment? Which therapies work, and which ones are a waste of time and money? What path do we take when there are so many options, none of which have a clear end point? All of these questions remain a mystery. As scientists work to unravel the causes and possible treatments for autism, we parents are scrambling to find our own answers. There is this sense of fear pervading every choice we make: Am I doing enough? Is this the right choice? Is this even working? What if I don’t do it, and I find out later this is the best treatment? What if I miss a crucial window of development?

 

This may be the most difficult part of raising our children. The fact that we don’t have a clear course of action laid out for us means we are often confused, overwhelmed, and fearful of doing the wrong thing or not enough of the right thing.

 

On the other hand, it can be a blessing in disguise. It’s a bit like taking a trip without a roadmap. Yes, it can be stressful and we may feel lost at times. But we also end up exploring down side roads we may never have noticed otherwise. We see and experience things off the beaten path, and make discoveries of our own. Along the way we find what works for our children and adopt those strategies. Through trial and error, we also learn what does not work, and we are free to discard those treatments and move on.

 

In the world of raising children with autism, no two paths are alike. For my family, I found that enrolling my sons in an intensive, autism-only preschool had a huge impact on their development. They learned, from professionals specifically trained in autism interventions, how to communicate well enough to convey their basic needs. They learned how to sit still (mostly), pay attention, and work independently when required. All of these skills served them well when they were later mainstreamed into regular elementary school classrooms. Now that they are capable of mainstreaming in their school environments, they are learning more speech and social skills from their typically-developing peers.

 

I also moved the family to a tiny mountain town with a small public school system. There are only about 15 to 20 kids in each grade, and my sons are recognized and understood when we are out and about in the community. I found that this lifestyle led to an absence of bullying, and a lot of understanding and inclusion. We also immersed ourselves in the natural beauty of our surroundings, with plenty of hiking, swimming and other outdoor time, which has helped their sensory systems regulate. I didn’t read about this in a book. It was just something I felt, intuitively, that they needed. And it worked.

 

Other families are taking completely different approaches. They mainstream in preschool, or they don’t mainstream later. They live in bustling cities with access to everything they can imagine. Their children attend huge schools with hundreds, or even thousands, of other kids. Their paths are different, but they are finding what works for them as well.

 

Maybe there is a lesson we can take from this. The treatments for autism are as diverse as our children, and there is no set formula that will always work for every kid. The most important strategies aren’t found in books or on websites, but are innate qualities we can all embrace in ourselves. Follow your intuition. Listen to your child. When something works, keep doing it even if you feel silly. If it doesn’t work, discard it and move on. Respect your doctor’s opinion, but also realize they don’t have all the answers yet. And whatever you do, don’t worry about what Great Aunt Hilda thinks. The best advocate for your child is you.

 

So get in the driver’s seat, buckle up, and get ready for an adventure. There is no road map for autism, so you’re going to take some crazy side roads and wacky wrong turns. Sometimes you may find yourself alone on the road, and at other times you may ride in a caravan. You probably won’t take quite the same path as anyone else, but the path you do find will be the right one for your child.

 

 

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This person thinks that disabled people have no right to refuse a cure or treatment

By on July 14, 2012 in Autism

Imagine you’re talking to a group of people about disabilities. One person says to you that disabled people should be force fed what ever cure or treatment is available so that their hard earned tax dollars are no longer burdened by having to support those people.

What would you say?

“No moral right to refuse a cure”

While in a heated discussion on a blogs comments, two people exchanged opinions where one person, nicknamed “taxpayer” replied with this:

M@”Does focusing on access barriers rather than cure make a wheelchair user less of a stakeholder in discussions re physical disability?”

From my taxpayer perspective the answer is No, they don’t have a right to be there. No one has the right to refuse a cure or a treatment that would make them less needy of state-sponsored services.

I would much rather see my tax dollars going towards a CURE, I would rather be paying to ERADICATE autism than paying for your wheelchair access barrier and many millions of wheelchairs to come.

So yes, unless a disabled person is financially and physically independent they do not have moral right to refuse a cure or treatment. And they especially don’t have any right to sit on a panel that was created to COMBAT that disability.

Sorry, I’m not going to link to their blog so you will either have to find it yourself to get full context (does context really matter for a statement like this?) or just take it for what it is.

money vs moralsTo paraphrase, and I don’t think I’m far off here, is that this hard working taxpayer feels that their valuable dollars are going to people who would rather keep needing more tax dollars than be cured and stop costing the system money.

From a strictly greedy, selfish, inhuman and egotistical point of view, this reasoning is actually quite understandable.

Still though, it doesn’t explain the “moral” part, does it? What does money have to do with morals? What does saving a buck have to do with morals?

Allow me to paraphrase once again, keeping morals in mind, just so that I can make better sense of this: “You and/or your child should not be allowed your basic rights nor have freedom of choice as it interferes with my wallet.”

Morals? All I see is irony.

How to respond? Let me count the ways!

So I got to thinking about how I’d respond to this person. I know from past experience that any response, no matter how articulate, compassionate, informative or insightful would basically fall on deaf ears. Excuse the disability pun. And the irony. Again.

I decided to do away with responding from my heart. I figure that this person would actually require one to be able to understand, much less relate to, my thoughts on the subject.

Instead, I figured it would make far more sense to appeal to their tragedy. They are obviously very hurt by this.

So here is my response to Mr or Mrs Taxpayer.

Dear “Taxpayer”,

My child was born with a disability and our entire lives are affected by it. There’s going to be some struggles just about every step of the way and yet we never get down or negative about it because we just love him so very much.

But please, tell me about how burdened you are by paying the same taxes I am. That must be devastating for you. Is there anything I can do to help? I hate to see you suffer so.

Sincerely,
A taxpayer too, but with a heart.

I would love to hear your responses to this person. What would you tell them if you could say just one thing to this person?

For more on this:
The disabled don’t have a moral right to refuse a cure or treatment?
You have no voice

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Should You Really Try Every Autism Treatment Until You Find What Works?

By on August 20, 2010 in Autism

I have pretty much always told people to just try stuff until they find what works, whether it’s a diet, a medication, a therapy, an oxygen tank or even DAN. Some are far more extreme than others, some are fairly simple to do at home… no matter how different they may be, some work and others don’t.

I’ve always told people that there is not a single treatment out there that works for 100% of people and so what works for almost everyone may not actually work for you. Then again, something that seems far fetched and doesn’t get results for many may just be the key treatment you’re looking for.

However, over the last few years of researching and learning about what all is actually out there, I’ve learned to change my tune a bit… my suggestion to ‘try everything’ comes with a very bold disclaimer now: “Use common sense!!!”

Just because I say to try everything, that doesn’t mean that I want you try something that is not safe. You have to use your best judgment, which is to say, do your homework yourself.

Even if 10,000 moms (or dads in my case) out there all tell you that they swear by something, that doesn’t mean that it’s safe, much less that it works.

Lately, in the news, you may have read about the OSR#1 drug which was recently pulled off of shelves. The Autism News reported back in January about it, in an article called “OSR#1: Industrial chemical or autism treatment?”

If that doesn’t raise alarm bells, I don’t know what will. There were never any certifications or approval labels given to this drug because quite simply, it was not safe. It was finally pulled off the shelves in July, 2010. Yet, thousands upon thousands of parents not only used it but endorsed it to other parents.

Another medication that many parents have tried, and again, endorsed, is Lupron. You may have heard of it, but probably not… a well known science blog wrote about it in an article called “Why not just castrate them? The Geiers’ “Lupron protocol” metastasizes”.

This drug effectively castrates your child, cutting off hormone production in an attempt to mellow them out… much like fixing a cat gets them to stop acting so wild.

Did all of those parents do their homework on these drugs before hand? Granted, hindsight is helpful… in that there likely wasn’t as much information in the beginning but still, if you did your homework as you should, you’d at least have seen the warning signs.

And no matter how much you trust or distrust your doctors, you should be asking about these things before putting them into yours or your children’s system.

There’s a lot at work when it comes for wanting the best for our children… our own passion, our mission, our cause, community endorsement, community support, people with “doctor” before their name that simply wish to make money…. in the end, we absolutely and unquestionably can not ever let these things make us sacrifice our own common sense.

I want to ensure that my son, Cameron, grows up as healthy and happy as possible just as much as the next person but setting aside my common sense and taking big risks on the unknown is not the way to get him there.

Whether it’s a mom, a friend, a veteran ‘expert’ or even someone with a P.H.D… no matter how much you trust someone, no matter how much you really want to believe… do your own homework first, and use common sense.

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Money Problems – Research or Treatments?

By on June 29, 2010 in Autism

It seems that money is more limited for Autism than it is for other things such as Cancer and Aids, and rightly so really, since they cause death and Autism does not… but limited money means having to make hard choices.

Autism Speaks came under fire when their *then chairman suggested that they stop funding repeated research into vaccines over and over again and turn the money towards other areas of research.

That’s all well and good for finding a prevention in the future but I think most of us parents would agree that we’d love to see more money funnelled towards the programs and organizations that actually help us right now. My son was diagnosed at 2.5 years old and was immediately put on a waiting list…. a 3 year waiting list! That’s simply unacceptable as he’d be older than 5 before receiving his first bit of helpful therapy.

Furthermore, he’d be put into school before 5 and would be in a class with 28 other ‘normal’ children with a teacher that wouldn’t be able to help him, and no aids neither. I don’t have to be a psychic to know that this would be catastrophic to his development and to his future.

My wife and I had to take it upon ourselves to find better services elsewhere, to sell our house, to pick up and move as quickly as we could to ensure that he had the help he needed.

Now, admittedly, this gives me a rather narrow view of it and a pretty biased opinion of where the money really should be spent…. what benefits my son will always be my top priority but my logical side also tells me that research is paramount to ending this sort of thing happening to parents and their children in the future.

So my question to you is, where do you think the money should be spent if we have to choose one over the other?

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