Autism Watch: 2007

Archive for the ‘Autism News’ Category

Lately I shared with you how much I enjoyed the new book, The Autism Revolution, by Dr. Martha Herbert. This book is truly a whole-body approach on helping your child, in layman’s terms, with resources and realistic recommendations. If I had my way, every doctor, therapist or teacher would read this and use it to help their patients and parents. It is *that* good.

Courtesy of Harvard Health Publications and Dr. Martha Herbert, I have two copies of it to give away!

To win the book giveaway, you can do one (or more!) of the following three things — each thing counts as one entry, max of 3 per person.

1) Respond to this entry with a brief answer to the following question: what area are you working on with your child? (Such as: anger issues, verbal skills, potty-training, eating problems, stomach pain, behavioral, etc…)

2) Follow me on Twitter (@autismwatch2007) and come back and respond here to let me know your Twitter name and that you’re following me.

3) Follow my blog and post to let me know that you did!

Thanks for playing! 😉  (And this book is so worth the time it takes to enter!)

I’ll close out this giveaway on  Sunday, May 20 at 9pm EST and randomly choose two winners. I’ll then email you for your mailing info, so keep an eye on your mail. (I’ll also announce the winners here!)

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Get ready for a book giveaway! Check back over the next couple of days for details on how you can win your own copy of “The Autism Revolution,” by Martha Herbert, courtesy of Harvard Health Publications! (I’m giving away two copies!!)

(I’m away at the moment but will be getting this up on my blog and my Twitter as soon as I’m back fully — and safely, major storms going on right now — on my laptop.)

Look for me on Twitter at Autismwatch2007 and come back to enter in the giveaway!

I live in a small town. A four -stoplight kind of town. (Wow, I never saw that coming given that I’m from the busy ‘burbs of California.) Our library means well, the staff is nice and they have some great offerings, but as far as books, it doesn’t house the new stuff. (Unless it’s a book on the south or a fictional southern-based drama, but I digress…) To get something new, I have to utilize their intra-library loan system and sometimes get on a wait list.

Last week, I was uber-surprised that a) the county library system had the new book I was looking for, and b) that there was no wait list.

I didn’t expect for a new book on autism to make it onto their shelves, in an area where the word often gets you the “hmmm, I think you just need to spank him” response. I should not have been surprised at all though that there was no wait list. That was the California part of my brain, where I am used to there being a lot of people who research autism, acknowledge autism, and read the latest and greatest books on it. Sigh, I’m digressing again.

Here’s the book I’m talking about: The Autism Revolution   Check it out.

One week later, I’m two-thirds done and I have learned SO much, but more importantly, I’m stuck on “Someone gets it!!! Finally!”

Dr. Martha Herbert gets it. She not only gets it, but she puts it out there in an awesome book so the rest of us can get it, too. I want to hug her. (If I ever am lucky enough to go to a conference, I want to at least tell you the major thanks I am feeling. I did meet her about five-six years ago, but I highly doubt she’d remember me.)

I want to give this book to every doctor and teacher I know. (The cynical part of me thinks most teachers wouldn’t read it. After the years of hassles and hardships at schools, I don’t know if BB will ever go back to a public school. In an ideal situation, he’ll be attending a magnet school for computer skills, a perfect world for both of us.)  This book breaks down, in no uncertain terms, how autism is a whole-body issue. The brain and body work together. If one is affected, the other will be affected. Someone gets it! Finally!!

It also highlights what so many of us parents have seen but not so many doctors acknowledge: autism, in a high percentage of kids, includes a list of medical issues that are frequently treated as ‘just a coincidence,’ unrelated to autism, yet so many of our kids experience. When BB was young, he was a medical puzzle. Chronic diarrhea. Years later, encopresis and constipation. Skin rashes. Frequent ear infections. Swollen lymph nodes. Reflux. Food intolerances. The list goes on. The first 15 pages alone of this book sucked me in, and I had my husband sitting down to read it. (And this is a guy who doesn’t want to sit and read books — he’ll be the first to tell you, read this book.)

I’m not done yet, but I’ve already made a trek to the health food sites and ordered B-6, magnesium and more probiotics. DHA (fish oil) is next, but I’m a big believer of one new thing at a time, so if there’s any difference — positive or negative — you know what to attribute it to. Someone gets it! Finally!!

Get a hold of this book and take notes. It’s well-worth your time to read a book that will prove invaluable.

 

Autism, ADHD Share Genetic Similarities: Good article by Fox News.com and the title gives you a big clue what it’s about 😉     I saw this one in a news feed earlier today, so I googled it and found it’s referenced in quite a few blogs, so you may have already read it. That search then made me realize, I haven’t done a news entry lately, so here you go.

Autistic Maple Grove Boy Wins Battle for Treatment Coverage: a StarTribune article that’s inspiring to see as it’s a success story, but my first thought was “Why are we as a community still having to fight for this??”

Progress slow but sure in fight against autism: The Inquirer and Mirror writes a piece that makes me say “Really?” Where is this hope at the end of the tunnel? My son already has autism. We already get zip for help from any foundation or organization that all these funds raised go to, and because I work, we don’t qualify yet we can’t afford all the therapies out-of-pocket. I don’t want my son “cured.” I just want him happy and learn to regulate, and that won’t happen without services that the average person can’t get.

Missing Middletown Teen Reunites With His Family: Killingworth-Durham-Middlefield Patch article (whew, way too long of a name there). Feel good piece, as too often, these missing kids are found too late. SO nice to hear of a positive ending! For those who think Asperger’s and/or ‘high-functioning autism’ isn’t so bad, ahem, it’s still autism. Speech doesn’t necessarily cure much.

Autism Makes Multi-Tasking Difficult: ThirdAge.com article. To whoever did that research and came up with earth-shattering news? Thanks, Captain Obvious.

That’s it for today. IEP now set for next Tuesday…can we make it the remaining 3 days??

Over the years, I’ve noticed how the autism community doesn’t always work together to help itself. It’s only my opinion — I’m just one of hundreds of thousands of moms with an opinion — but I can’t help but think there are probably a lot of people out there who would agree.

When my son was first diagnosed, I immediately joined several autism communities, online and off. Some I stayed with, some I didn’t; some were helpful, some were depressing; some were inclusive, others were cliques. In other words, just like the rest of the world, these groups represented the bad and the good parts of society and families. I took it with a grain of salt, and learned quickly that simply having a disabled child didn’t unite us as much as I thought it would.

We all come from different walks of life, and different perspectives. Some of us are drowning in autism research, others have moved beyond that. Neither is wrong, they are just different stages of dealing with having an autistic child. Some of us work outside the home, others are stay-at-home moms. Some of us have other children, some have other special-needs children, some of us have an only child. Some are married, some are single. Some are fully following biomedical treatments, and others follow whatever their doctors say. Some vaccinate, others selectively vaccinate, others don’t vaccinate at all. The group is diverse, and as a result of that, a huge pool of invaluable knowledge.

Now if only we could work together to use all that knowledge.

Instead, I see us judging each other. (I know, I know, I’ve written about it before, but as Autism Awareness Month comes up, with April 1st being Light It Up Blue day, via Autism Speaks, and April 2 being International Autism Awareness Day, I’m seeing more and more commentary coming up that just doesn’t seem in keeping with the ‘let’s help each other, we all have a kid with autism’ credo that people like to tell you they follow…but don’t always do.) Maybe I’m doing it too just by writing about it, but if we keep sweeping it under the rug, it will never go away.

I’m not a follower of any particular autism group. All of them have their downfalls, and some are worse than others. All of them also have their advantages and good points, even if they never touch the majority of those affected by autism. While I don’t fully agree with any of them, I’m a big believer in ‘any autism awareness is better than none.’ If it takes lighting my business storefront up with blue to get people to learn about autism, or to get people who know what blue means to think about autism, I’m going to do it. In fact, I’m going to dye some hair blue for the month — talk about getting attention, it’ll stand out a lot more than the puzzle piece keychain or vaccine t-shirt I wear the rest of the year.

Years ago, I needed some serious help in regards to an autism-related situation. The main group I’d been involved in basically put their hands up and wished me luck. Since then, I’ve seen them give money/services to others in the same situation while others, like me, get by with referrals from strangers online. Help isn’t readily available, but is given to those they choose, which seems more like a popularity contest or a ‘how biomedical orpro-vaccine are you? -based decision. I was twice refused inclusion in an article about autistic children because we weren’t biomedical ‘enough.’ To me, that a child that is improving with just a couple of biomedical treatments should be shouted to the world; shouldn’t we be telling people you don’t have to buy HBOT machines or mortgage your house again just to see some help? Instead, we have to be whole-hog or no one knows who we are. What a disservice to those with autism and to the message that autism can be improved.

I’ve talked to quite a few moms (and dads) the last couple of years who have gone radio silent — they disappear from lists, conversations, and support group meetings. When I inquire how they are, I hear that they’re just tired of the whole deal. Tired of the same few families being chosen to represent everyone else. Tired of the judgment they get for not being GFCF, or for letting their child get a vaccination. They’re tired of hearing what they’re doing wrong or being treated as though they’re stupid for letting their child take a prescription medication. Tired of being ignored or of not being part of the ‘in crowd’ because of a decision they’ve made that isn’t the party line. Some of these people desperately still need the support, and others were wonderful, giving members of our community who have much to offer by way of information and support. As a result of the negatives, we lose these people, and the opportunities they bring with them, because we can’t respect others’ opinions, feelings and choices. And to take it a step further, some people do more damage by trying to make their point, showing the world our lack of unity in a common cause, and time is wasted proving someone else ‘wrong’ or taking time/energy away from the positive that both sides could be doing.

I’m really hoping we can go into Autism Awareness Month together, and just be glad for the fact we have an awareness month. I personally tire of it not being as important/popular as other months. I know it’s not a fatal illness, per se, though the wandering children or those with seizures, their parents will say it is a fatal illness and they’d be correct. With the sheer numbers of those of us affected, it should be everywhere. So I’m going to do my part. If putting blue light bulbs up all over my yard gets people asking me why, then I’ll do it. Our neighbors know we have a reason, so they’ll ask. They see orange and black at Halloween, red and green at Christmas, so I’m glad to use a different color or it won’t get attention. My hair’s black, so I have to dye it an extreme color to get it noticed – blue works! Maybe I could get spray though and do puzzle pieces…. 😉

Be kind to one another. If someone doesn’t agree with you, it’s okay to disagree — just like I disagreed with my friend who told me that because her daughters were fine after shots must mean that shots are fine. But disagree respectfully. Remember the other people may have reasons for doing what they do, reasons you aren’t privy to, shouldn’t be privy to, or simply won’t understand because you don’t live in their house. And sometimes, sadly, they don’t want to understand, but it’s not your call. Assume nothing — and don’t judge. People learn a lot more from each other when information is presented politely, gently, and respectfully, not as though you’re a naughty child who just can’t stop licking an icy flagpole.

 

The cause of autism is constantly being researched — part of me is glad, but part of me thinks they’re not spending enough time on what is already known, that vaccines and other toxins are contributing in some form. Still, I’m interested in reading about how “Autism Linked to Low Birth Weight, Preterm Birth” is being studied. Two out of my four kids were pre-term, one 5.5 weeks, and my autistic son was 3.5 weeks early. Neither is significantly pre-term in today’s age where 24 weekers live, but I wonder if it’s not more to do with the meds/vaccines assaulting their little bodies rather than just the birth weight/prematurity.

No updates on the Alex Barton case other than that the teacher was ‘reassigned.’ Who knows what that means. IMO, she should be placed on unpaid leave, or released entirely, but maybe ‘reassigned’ means she was given some filing job, hopefully at a lot less pay than her teaching position paid.

Autism: Searching for a Cause is a wonderful non-biased piece about the necessity of finding a cause, with rates what they are today. Worth a read, no matter what side of the vaccine/autism fence you fall on.

Does your autistic child like to use the computer? Great article here, short one, worth the read: The Associated Press: Grandfather builds web browser for autistic boy.

And my favorite news? Well, it’s not new, but since it’s about to occur tomorrow, read up: Green Our Vaccines rally. (I wish I’d been able to order this t-shirt. I SO want one. Know where I can still find one? I can’t make it to the rally myself, but I’ll be in DC in a few weeks…traveling from my little guy is not only difficult and hard on the family, taking him with me and then doing it again in a few weeks is completely not possible…oh, and I left him for 4 days last month already. Hard to do!) If they have to do this again, I will make it a mission to be there. I just hope this rally is televised on CNN. Visit the site at the link I shared. They aren’t anti-vaccine — they are SAFE vaccine. Our current vaccines are not safe. Formaldehyde and anti-freeze don’t belong in our childrens’ bodies, and too many at once could negate the positives of vaccination. Please read up on it without assuming we’re anti-vaccines. There IS a difference.

 

Has St. Joseph’s catholic church in Bertha, Minn. read that part of the bible? “Let the little children come to me, and do not hinder them..” Anyone at St. Joseph’s familiar with this bible verse? Or the Catholic credo that you are supposed to come to mass? Oh, I get it — more mandates by humans, “Go to church, just not MY church.”

It’s a sad day in the autism community, or any community, when you can be kicked out of church for a disability. I thought that was illegal? Maybe I don’t know my ADA regulations well enough, or maybe the church doesn’t, but so far, they appear to be getting away with it.

A church is place people go to help grow their faith. Sure, we can read our bibles at home but we can’t minister to ourselves the way a priest/pastor can. This family, just like everyone else and maybe moreso, deserves the comfort and ministry of a church, yet they are being denied it because their son’s severe autism behaviors are just too much for the church to handle. One blog I read said that the boy, a 13 year old boy but still a child, has urinary incontinence. It also said that he ran out of church so quickly one day that he knocked an elderly person over. (Wow, maybe no children should be allowed in church then — I see neurotypical children barreling into people left and right every Sunday.) I also read somewhere that the boy flails his arms and legs, and this was deemed dangerous, and that he spits, though the family supposedly said that part isn’t true. In the end, I don’t know the real story — I don’t know what he does, and what he doesn’t do, but I can clearly see what the church didn’t do, and that’s help this family. Maybe they really did offer a different place in church for him to hear the sermon, maybe not, and maybe the place they offered was unsatisfactory. Who knows. But in the end, a church got a restraining order to keep a severely disabled 13 year old boy out. Does that not give everyone pause? If not, it should!

Discriminating is illegal. Sure, keeping other parishioners safe is definitely a job of the church but there has to be a middle ground here. I have so many thoughts on this, I can’t cover them all without rambling but I want to know why major autism groups aren’t behind this family. Where is the ACLU or a famous attorney when it comes to a disabled white boy? Where is the press, and why aren’t they up in arms? Why aren’t all of us?

I know, truly, that there is another side to this story. But I also know that even in the most accepting of churches, in the kindliest of congregations, even a ‘high functioning’ autistic child can not always be treated as he should. And these are children we’re talking about, children of families who are using their faith to get through a tribulation. Needy families. Disabled people. Shutting doors to them can’t be how churches are supposed to act. I don’t know what else to say, but I hope that this church and those who complained about the boy are ashamed of themselves.


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