Autism Watch: 2007

Posts Tagged ‘news

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!)

Seems like you can’t turn on the news anymore without seeing something about bullying, and more and more, it’s teenagers who not only bully, but advertise it on YouTube, Facebook or other social mediums. It’s bad enough they’re doing it, but they’re proud of it and want others to see it.

The Dr. Phil show today was about four teen girls who beat up a 12-year-old girl (who already had a shunt in her brain, which apparently at least two of the girls were aware of) and video’d it, then put on YouTube. I won’t get into any further details as I don’t want to get anything wrong (you can find it at Dr. Phil’s website) but I will say it was very disturbing to watch, and not just the video but the reactions/responses of others towards what the girls all did.

As a country, we’re aware — the Bully Project movie is playing and many schools hold anti-bullying campaigns. Commercials stress that you need to stop bullying people for their race, their lifestyle, their orientation, but I would love to see them include the disabled. I go back and forth about whether or not we should even focus on the “who” of bullying — no one should be bullied, but with the increase of suicides related to internet bullying, I am aware that we have a long way to go so I’m on the fence. However, bullying is bullying, and bullying is wrong, no matter who the recipient.

We were coming home from the beach yesterday and BB mentioned, out of the blue, how he felt he’d been bullied by a past teacher. It was an interesting comment and his choice of words inspired a long conversation about what bullying was and whether or not he had actually experienced it. We didn’t feel the situation was bullying, but given that bullying comes in all shapes and forms, is bullying in the eye of the receiver? If he felt bullied, was he?

In his case, his IEP was being ignored and some teachers were trying to get him to just stop the irritating behavior so as to get on with the rest of the class and day rather than trying to help him learn better behavior. One example: finding out why he was tapping his foot didn’t matter; instead, he was told to stop tapping and when it didn’t work, he was moved to a corner desk. Alone and singled out, still with the need to tap his foot as the sensory issue wasn’t addressed, and it turned into anxiety and upset. Another: a classmate was allowed to pick on him for his facial tic because “that’s what kids do.”

Was that bullying? Or just lack of education in how to handle it?

We’ve decided that it is unlikely BB will return to a regular public school, in the format that lives now. Instead, we’re going to be looking for something more form-fitting, perhaps a techology-geared magnet school or program. It’s not necessarily because of bullying, though it sure does play into the decision somewhat. BB will need to learn to deal with the bad behaviors in the world. He’ll need to learn to control his reaction and respond appropriately, and/or walk away. We wouldn’t be doing him right if we just pulled him away from it all and didn’t prepare him regardless; he’s going to be out in the world, be it now or next year or in seven years when he graduates, and he’ll run into other bad behaviors displayed by fellow college students or co-workers, or just people waiting in line with him at the bank.

Until he gets old enough to be more independent, we will continue to work with him. Last week, after the homeschool event situation, we gave him some tools on how to handle it if it recurs. “Please don’t touch me.” Talk to a teacher. Seek a safe adult. We want him to realize that even if someone else is being mean, it’s no excuse for him to respond in kind. He can’t control their behaviors, but he can control his own. He is also worthy of respect and doesn’t need to put up with bullying or meanness from anyone. He may be just a child, but children should be respected, too. Bullying sends the message that you’re not being respected, and no one needs to tolerate that.Parents need to model the behaviors they want their children to emulate, so we as adults need to think about it as we’re out in public. Do we honk our horns at slow cars? Do we berate an employee providing customer service to us when things don’t go as we want? Do we fight fair? Do we make fun of people? And to add a new level to it all — do we go to Facebook or Twitter to tell the world about all of our problems? Do we share so much online that our kids think it’s normal for them to as well? Do we bash our husband, our employer or whine about every little twinge or ache? It may not seem to relate but when kids see us use social media to seek attention or antagonize, it rubs off. How many times have our kids said “Well, Mary did it too…” Do we want them to say “But Mom did it too…”

I know it’s not as cut and dried as that, but you have to start somewhere. I don’t want any of my kids to ever be the victim of online harassment or attacks, but prevention is a multi-pronged approach, and even then, not a guarantee of success. It starts with our behaviors, and continues with us watching theirs, addressing things as they come up and listening to their concerns. BB showed me that we may not see something as bullying, but if they perceive it as bullying, it needs to be addressed. Maybe that means just us explaining to them that it’s not bullying, or maybe it’s a red flag that yes, we need to step in.

It’s sad that bullying is such a problem anymore, but one person at a time, we can decrease it. Bullying the disabled — or anyone — happens every single day. We worry about 1-in-88 having autism — and we should worry about it — but like autism, we don’t know the cause or cure for bullying yet and until we do, we need to tackle it before the numbers are even higher.

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??

Two weeks ago, I took my son in for his yearly well-child checkup. (I still want to keep referring to it as a well-baby check-up. I am in denial that he’s now ten.) I got the dreaded news that he failed his eye test. Actually, I figured it out as he was attempting to guess what letters he was seeing and my jaw kept dropping further and further as I saw how bad it was. How did I not notice this sooner?

Fast forward to yesterday, when we went to pick up his glasses. He’s so.darn.cute. He chose his own glasses, and I was super-thankful he chose a pair that was not far out of the range of what our eye insurance covered. (Does it ever really cover frames 100%? Everywhere we go, the frames are always priced outside of what the insurance coverage is.) For his first pair, I didn’t want to break the bank in case he broke the frames. It’s a habit to get into, being careful with them, removing them when you need to, remembering where you put them, and putting them in the case. Cleaning, all that stuff. I was concerned but he has, like he usually does with challenges, risen to the occasion. He loves his glasses, says life is now in HD, and is thrilled that he can see nature so clearly. That’s my barnacle boy.

I took a business trip this week, and was away for two days. I missed him all the time, but let’s face it, a break is a good thing at times, for all moms and all kids. (And if you say it’s not…I think you’re not being honest or you’ve never had a break and relished the uninterrupted time to ponder the little things in life that slide by in the rush that is parenting. Trust me on this, as a mom of four, time away is good for you AND for them.) I shared photos on my FB page, and was glad when one inspired a friend of many years ago to respond because I’d traveled to a place she’s always wanted to go.

I didn’t know it, but my friend works online now and is enjoying being able to work at home as opposed to heading to an office each day. For years, she tells me now, she didn’t realize that working from home was/is a job like any other, with supervisors to report to, accountability, and deadlines. Now though? She gets it in spades. She was a journalist for a local paper when I met her, and now manages a small staff of writers for an online publication, and while she loves it, she’s found she’s struggling with parts of it as she adapts. She had to miss a child’s performance. Having to say “Not now, I’m working” makes her feel selfish. Then she was asked to release a writer, and it was her first time. I virtually held her hand as she dealt with the guilt and the fallout in the last three days, and felt for her. Been there, done that, and it’s awful. Of course, the writer was unhappy and blamed her, though like in any company, my friend didn’t make this decision on her own and was just the messenger. It’s not a fun place to be, because she can’t really do anything about it nor say anything as she is contractually obligated to direct them as she’s been told to direct them, and to zip her lip otherwise — she of course can’t even tell me details — and she’s still talking about how she hates to be the bad guy. I felt her pain, because when you aren’t seen in person, it’s easy to be misunderstood when in reality, you’re doing your job, even the hard parts no one likes. It’s something learned in our years dealing with autism. I may not like what I hear in an IEP or from a teacher, but people are usually doing what they’re told so getting ticked at them, and then holding onto that anger and bitterness takes away energy from focusing on your child; I tried to remind her of this while giving her the much-needed hug, so she hopefully was able to take it for what it was, understand the writer’s feelings, right or wrong, and move on while hoping the writer did too. (If you’re wondering how that ended up, the writer blasted her on FB and now wonders why she’s having a hard time getting another gig. It’s sad all the way around. So much negativity, sort of like in high school when someone steals your boyfriend and you vow to never talk to them again, and you tell others bad stuff about them, true or not, and then you grow up and realize that life’s not all black and white and maybe you weren’t a good girlfriend anyway.)

I think we’ve been able to upgrade our friendship based on a new shared thing in our lives: working from home while managing an autistic child. See, she too has an autistic son, and while he’s a couple of years younger than BB, we met when our kids were in a social event but had little else in common. Now we can support each other through not only autism-related issues, but the different world that you live in when you work at home full-time and don’t have the same type of day-to-day life you do when you’re in an office and I don’t have any other physically-close friends who work at home. We wouldn’t have met without the autism connection, and while I’m sure both of us would rather not have that, the reality is that we do and because of it, we’ve been able to make new friendships that add so much more to our lives in other ways. It hasn’t been long since we reconnected, but I think it’s going to be a lifelong relationship. Life works in mysterious ways.

Autism may not feel like it initially, or even years later, but it’s expanded my eyesight. I see much more than I used to. My life is expanded, not limited. I lost friends during the early years of diagnosis, but I have gained many more as time goes on. My son’s eyesight is expanding now too, and we all see clearer.

Recently, I had a discussion with someone about how my advocacy style was so different from hers. She’s gung-ho about telling everyone she meets about autism, blogs about it frequently and does it without the protection of anonymity, and most conversations end up including autism to some extent. Me, on the other hand, I don’t mention it so much. Not only does my husband not care for it when I tell a random stranger, even for the purposes of perhaps helping one more person understand our kids, but I am tired of getting the ‘huh? uhm, yeah, okay’ response. I blog with anonymity, referring to my beautiful son as Barnacle Boy, a childhood nickname due to his attachment to me (still) and don’t want him ever reading this when he grows up. I also don’t want the people that I run into to feel like they aren’t going to be open with me for fear of showing up in my blog someday. (I know people who’ve found themselves the subject of a negative blog entry or comment, and being the social outcasts we autism moms already frequently are, why up the number of people who don’t know how to talk to us?) I also try to not include autism in every conversation — let’s face it, after almost seven years of a diagnosis, my friends know what life is like, they understand when I’ve had a bad day, and I only need a few words to convey what’s really going on. Saying “school called again” with a sigh is enough. Or just saying “it’s been a long day” suffices. They get it.

I think a lot of it has to do with the fact I’m not immersed in treatment 24/7 right now. I used to be. I had to be. My BB would bang his head on the floor in pain and/or anger and frustration, and he’d pull out his eyelashes. He’d bite himself, and us, tags and normal clothing textures made it hard for him to get dressed — and stay that way — and crying babies would throw him into a tailspin. His communication skills were off, he had no eye-contact, and the random stranger touch freaked him out. And then there’s the running away, the sensory issues, the other behavioral issues, and the social skill deficits. In many, many ways, there’s been vast improvement. Most people would look at him now and wonder why we’re so worried. But those would be people who didn’t see where we’ve been. They didn’t see us with bitemarks and bags around our eyes from lack of sleep or worry. They didn’t have to sit with us through a blood test to check his blood sugar level that was too high during last month’s physical (which was a wreck itself, because he hates being touched by strangers and of course, the doctor wants him to be almost completely undressed and that doesn’t fly with BB) nor go with us to the dentist, which was only two months ago that we had to switch because he bit the guy and caused him to novocaine his own hand.

But we know. And that’s why I continue to advocate, but in my own way. I focus on educating those that have direct interaction with BB, or those that ask me because they want to know more or know another family dealing with autism. I still throw out info to the random stranger sporadically, but I figure that unless there’s a reason, I don’t need to necessarily give them our story when I don’t know what they’re dealing with at home. Years ago, a woman felt the need to chastise me in public for telling my kids, while I was writing a check in a crowded store, to quiet down.  “You are so blessed to have them, you should remember that.” Uhm, okay? “Yes, I am blessed, I know that because of fertility issues that required a lot of fight to get my family size to where it is today, which isn’t your business anymore than telling me to not tell them to quiet down. Thanks and have a nice day!” Moral of that story? You never know what that other person already has dealt with, or is dealing with, so pick and choose who you give the autism story to. My feelings are that advocacy is most successful when used judiciously. Sometimes we are advocating for ourselves — it makes us feel better, but just makes the other person feel worse, and it is no longer advocacy.

My goal is to advocate for my son in a way that helps him, and the autism population at large, but without constant intrusion or sounding like a broken record. I have three other children, a full-time job, and a husband. I only have so much time and energy to go around, and for my sanity, I need to move on to other topics. My friends need me to move onto other topics. They need my listening ear, and to do that properly, I need to be able to focus on them; the time will come when I need them, again, and the friendships I’ve kept while on this autism rollercoaster are more valuable to me than I can possibly ever convey to them. The few strong solid friends who I will call friends forever are worth more to me than the many that I lost because they couldn’t understand why I couldn’t get through a five-minute phonecall without hearing BB cry or get upset in the background; they couldn’t deal with my being unable to go out to their house without BB having a meltdown or they’d get freaked out when he’d hide under a table; they couldn’t risk their child having to witness mine crying because he was again left out of a game or because I wouldn’t let the other kids call him names; mainly, they refused to understand autism and my son’s odd professorial-type of vocabulary fooled them into thinking he was just a brat and we were bad parents, with the fact that we had three other children, all older, who weren’t ‘brats.’ The list goes on, and there are times I wish I could really give those people a trip through time to show them what life was like, what we’ve been through, and most of all, what my amazing brilliant son has gone through, and how far he has come.

Our children are the epitomy of courage. They don’t give up. They are examples and should be seen as the brave people they are and that’s where I want to focus my advocacy efforts for now. I don’t want to raise money to go in some administrator’s pocket or tell me what gene my son has that’s not right, nor tell me some other reason why it’s my fault he has autism. Sure, I want to know the reason so we can prevent other families from going through this, but I also think money rarely goes to the families who need it the most — those dealing with it now. One-income, two-income, ‘rich,’ poor, it doesn’t matter. It’s too hard to get help, and as a result, we learn to do it ourselves, and that’s advocating for our child in a way no one else can do anyway. So even when we’re not publicly advocating, we’re privately advocating, and that’s enough for me.

 

If you’ve been a long-time reader, you know my posts run the gamut of vents about daily life with autism, frustrating school run-ins, interesting (or scary) autism news articles, and opinions about the world of autism. If it’s about autism, it’s in here somewhere. Like any parent of a child on the spectrum, I’m a 24/7 advocate. That said, I still ramp it up during Autism Awareness Month. My house is surrounded by blue lights — not to represent or advocate an organization, but to get the word out on autism. (Believe me, the blue stands out and gets questions.) I carry more autism cards to hand out, I talk about it more in general, and in specific, I suggest other businesses celebrate Autism Awareness Month. I work with anyone available to get the word out, because the more the word is out, the more understood my son will be. The more understood the neighbor’s son will be. The more understood my nephew will be. And the more understood those children we walk past in CostCo, the library and the child melting down at Disneyland will be. And the undiagnosed? Their parents may see the signs earlier. With enough awareness, maybe one day autism will be a thing only pre-existing children/adults have, and it won’t occur anymore. I can hope, right?

Please look around your community and see what events are occurring. For us, we’re taking place in this walk on Saturday. A bit of a drive, but it goes towards Dogs for Autism, and as my son has a service dog, we know that you can’t put a value on it, and every child with autism should have that special opportunity.

Put a ribbon on your blog. This BloggersUnite page is full of resources and has a ribbon and autism awareness badge available.

Write up a blog entry about the month, even if your blog isn’t about autism. Do you know a family with a child with autism? Offer to babysit so the parents can get out for a couple of hours. Have your child set up a play-date for the child — I tell you, that’s one of the best things someone could do for me. Our kids have social issues and are frequently left out of parties and other gatherings. A lot of places ask for financial donations, but there are other ways to make a difference.

I’m off to find some notes about BB to share for my upcoming school training. Wish me luck!


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