Autism Watch: 2007

Posts Tagged ‘book

Honestly, sort of discouraged by the giveaway results.

I tweeted, I blogged, I social media’d it to death and got a lot of new followers on the blog and Twitter, but to be in the giveaway, you needed to post TO the blog entry. I tried to be realllly clear about it in the instructions so I’m not sure what happened.

Don’t get me wrong — I’m super-excited about new followers and I’m not going to take it personally 😉 — but comments would have been really cool! Now I can only award one prize to the one person who commented!

On a good note, I will hold another giveaway with the other copy of the book, once I’ve had a week or so to figure out how to do it more successfully. The books (The Autism Revolution, by Dr. Martha Herbert) were supplied to me by Harvard Health Books and I want to do them right. If you are dealing with autism, from Asperger’s to severe autism, this book is illuminating and worth the read.

Stay tuned, I’ll announce that next week, and in the meantime, back to blogging about autism. (And maybe a brief blog about how plantar fasciitis is negatively impacting my fitness, my patience AND my wallet! Begone, PF, you are cramping my style…literally!)

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If you entered the book giveaway, remember you need to respond to my blog post to enter — if you followed my blog AND/OR followed me on Twitter (autismwatch2007) you need to respond to that post to let me know that too! (Options 2 & 3 in the giveaway directions)

Winners will be chosen from those who post to that entry.   http://bit.ly/KSXgwV   I got a whole bunch of new followers in the last couple of days (sweeeeet!) but if you’re following for the giveaway, respond to the giveaway post so you can be included, thanks!!

 

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.

 

I was recently lent this book by someone in the education field, someone who I was really pleased to meet and am very thankful for, and I’ve only known her a couple of days. She lent me this book within minutes of meeting me, a Southern sense of generosity I am quickly growing to love and appreciate, and hoping to emulate.  Not only am I excited because I haven’t had a good book to read in months (due to the move) but I love Jodi Picoult books, and this book is right down my alley of interest because its focus is on a family dealing with Aspergers, a mild form of autism. (Though I hate to use the word “mild,” because even the mildest of autism labels on a bad day can be devastating.)

Since the move, my back has been acting up — I guess herniated and bulging discs tend to not improve when you sit in a car driving for ten hours a day — and I’ve had to take pain meds for my migraines twice. Not a great track record for being here less than two weeks, and I hate to look like a wimp to people who haven’t been around me 24/7 for long. I’m also plain out tired much more frequently than normal. (I had high hopes of staying up till 10pm at least, get things done, just hang out with my husband, blog, you know, all that romantic stuff. Ha.) A book is the perfect thing to add in when I’m not as agile as I’d like to be and I’m tired, though I hate to be tired. It wastes my time. Then again, maybe it’s a sign to chill out, slow down, and enjoy what’s happening right now, this process of starting over, to remember it, to live it, and to enjoy it. To be philosophical when I’m normally not, by remembering life isn’t just about achieving your goals, but the steps you take to get there.

While I’m only about ten pages into the book, I am sucked in. Jodi does an amazing job of portraying real-life Aspergers/autism — she gets it. She thanks a large group of people for helping her, and I thank them for sharing their very personal details, but I also thank Jodi moreso for wording it in a way that’s believable and will help the general public understand what we go through. The meltdowns in public for tiny things. The stares that burn you despite years of practice ignoring them. The need for routine and the critical effort we parents put forward to focus on the big issues and let the little ones slide as necessary. Within the first two pages of text, I found so many of the little things that we deal with daily, put in print where I could read to my husband and say “WOW. Someone GETS it. Now others will GET it.”

I have to admit to some guilt when I read a chapter from the brother’s perspective. I’ve always felt my other children get short shrift at times, but what do you do? You have only two arms and can only be in one place at a time. When one child’s huddled on the floor shrieking, you can’t lift him up and throw him into a car, buckle him in, and safely drive to a DMV driver’s license appointment. You want to listen to your other child and give them the time they need and deserve, but you’re mentally drained from forcing your ASD child to go to school. You feel guilty that you can’t do it all, but you feel guilty for thinking anything that even slightly, and only to yourself, implies that you would begrudge your ASD child every ounce of energy needed to improve or even just get by. Guilt, it’s all around if you let it in.

I hope to read some from Jacob’s perspective soon. The autistic mind fascinates me, and any little bit of understanding I can gain will only benefit us, even if I don’t like what I hear. I am thankful I am not going this alone, as the mom in “House Rules” is, but I am impressed with her outlook and her realistic struggle to do it all, and do it all right, while accepting that she can’t.

I hope to dive in and read another 100 pages or so this evening, though I don’t want to be rude and hide in the bedroom again, as I’ve had to do a few times for either a backache or a headache. Me, the runner, avid exercise enthusiast, wannabe personal trainer and health nut, dealing with health issues when I least have the time for them. There’s work, my son, my other kids, my husband, the animals, and so many other things I want to do — we gardened (planted potatoes, a variety of peppers, beans, etc.), we swung at some golf balls, we talk, and we just plain out live. In California, we ran from one thing to another, only really kicking back to watched Tivo’d shows together, a Nascar race, or visit friends. Then there were the innumerable errands to Target, Kohl’s, Gamestop, and of course, Starbucks. Relaxing and ‘living’ occurred between all the ‘have to’ events. Strangely enough, I don’t miss any of that. I have replaced the extra expenditures with a cup of coffee enjoyed while watching BB chase his dog around the backyard. I have replaced the need for more clothes by wearing the same tank top twice in 10 days — gasp! It’s possible! Only the family sees me anyway, and there’s a strange joy in saving money. Who knew. (And having an unemployed husband will also make that easier…though that’s not for long. He’s having a really hard time not working, he’s the kind who can’t sit still and must be productive and active all day, every day, but he’s enjoying handling school issues and dropoffs/pickups. He found he enjoys mowing and tilling a garden, and bringing me another cup of coffee. And I’m enjoying having him around more.)

To the family of Nadia, the little girl with autism who was recently found after being missing for 4-5 days, God bless you. We breathed a sigh of relief when we heard you were safe and surrounded by those who love you. May your family and you get the privacy you need to recoup. Another miracle occurred, and she’s home.

First, today is World Autism Awareness Day. I wish there was a way to roll the word ‘advocacy’ in there, but a website url can only be so long and be remembered. Bumper stickers only so big. Headlines only hold so many characters. Check it out at: http://www.worldautismawarenessday.org. It isn’t the end-all, be-all for autism, but I’ll take it. If it gets just one more person to learn about autism, that’s a success in my eyes.

So much going on lately. No, no major illnesses, traumas, situations, just a lot of stuff. Just a ton of stuff. I bought a new car; I figured driving an 8-seater SUV we bought when we had all the kids younger with us regularly no longer was necessary now that I’m driving just a couple around. I also hated parking The Tank on regular errands, and my dh either took pity on me or got tired of hearing about it, so he decided the time was now. I got my ‘dream car’ for all intents and purposes and in today’s economy, got one heck of a deal that makes it completely affordable all the way around. (And to fill a tank on $35 — who knew you could do that??) Getting the alarm/bluetooth installed took FOREVER to get resolved, but the dealership was spot-on solid about customer satisfaction, so thumbs up to them despite me having lost almost a week of my life that I’ll never get back.  We also went camping and half of us ended up with the stomach bug. Work got busier, and the cockatiel noisier. (You’ll see why that matters later, I promise. I may be weird but I usually make sense.) And there’s ds.

The last few weeks, something’s been off. He’s had a lot of headaches over the last six weeks, resulting in the need for a panel of blood tests and an MRI. (Or as he keeps calling it, an “MRD.”) He’s been tic’ing a lot, this gulpy breathing tic that bothers me more than it should, way more than it bothers him. His temperament is completely unpredictable; he’ll be great one minute, inordinately angry the next, and crying a few minutes later. Then there’s the lips. And that’s where the problems get worse.

With the headaches/migraines, ds has had a hard time finishing a full day of school without a visit to the nurse. We try to get him to stay the whole day, but if his head hurts, he can’t. Yet, if I keep bringing him home, he’s got too many absences. We’re waiting on our follow-up neuro. appt., but that’s not for two more weeks. There’s no way to get him in there sooner, and even that will require him to miss some school time.

Attendance at school is not as important as we’re led to believe. As a past homeschooler, this I know for sure. I may not know everything about autism, but I know that autistic kids interpret stress and other things they can’t identify in ways we don’t understand. A headache could be anxiety from having to sit still too long while waiting for other kids to finish their work, a problem he tells me about frequently. (He chose to up his RSP time to help with that.) A tummy ache, that could be stress from trying to get along while the buzz of the fluorescents and the breathing of the bumping child next to him distracts him. We all get these things, but as non-autistic people, we find ways to get by. Our kids? Not so much. These are things not easily remedied in a school setting, but if we bring them home, not only are we showing them they can get out of an unpleasant situation and skip learning proper coping skills, but we have the dreaded lengthy list of absences.

So it puts the parent in a difficult situation. Unwinnable. You can’t necessarily make their illness go away while they’re at school, but if you bring them home, where they will feel better, then you have a whole different problem. What to do?

I’m giving my son a pep talk every morning. “Don’t go to the nurse’s office unless you are completely sick and can’t stay.” I don’t want the poor thing struggling through a day with a migrained, but where do you draw the line? How do you know? And how do you improve communication skills so the real problem shows through and isn’t masked in some aching body part?

Lately, he’s complaining about his ‘friends’ at school again. I say the word ‘friends’ lightly, because, in my opinion, friends invite each other to their birthday celebrations. Friends don’t ignore you when you call their name, and I’m not sure if it’s even called ignoring when the kid looks directly at your child and then keeps going. Friends don’t play right in front of you and pretend you aren’t there. I feel sorry for today’s kids in sort of a big picture notentirelymybusiness kind of way. (And if this doesn’t apply to you, disregard.) Kids won’t necessarily have manners, compassion and know how to treat a friend if they’re not taught. This is where parents come in. It’s not the school’s responsibility. (But, I would expect teachers to address it when they’re seeing it.) Parents need to teach their children how to not treat someone else badly just because they’re different. Not to ignore someone who calls their name. To be nice to someone when that person’s not harming them. How is a kid supposed to learn if mom tugs the little girl’s hand away as fast as possible when your child says hello? How is a kid supposed to learn if mom says “stop!” to her own child (and worse, yours) when they are playing nicely, for no other reason than she doesn’t want her perfectly neurotypical child playing with your non-infectious ‘different’ kid.

See, here’s where I differ from a lot of people. I haven’t shared my son’s diagnosis with the classroom and students at large. I don’t feel I should have to, nor do I feel it’s in his best interest. I’ve considered it. (Well, “we,” as in dh and I, but I’m the blogger, so I’m going to talk about me. It really is all about me.) But, the judgmental attitude I experience with some parents wouldn’t magically disappear. Many parents would just change from “you poor kid, you don’t have to subject yourself to playing with the different little boy” to “you poor kid, I won’t force you to play with the kid who can’t control himself.” Yeah, I have a bad attitude…today. Or often? Hard to say, but I am still wondering how my son is supposed to fit in, or learn to fit in, with other kids his age when few give him a chance? We expose him to as many groups of kids his age (and older/younger) as we can, but his differences make him stand out, and few people want to take responsibility for having to deal with it voluntarily. So, he’s been invited to two birthday parties in the whole last year, and two friends have him over. And I know, we are more blessed than many by having those two friends. Thing is, my son’s not that much of a handful. He is a handful, yes, but there are times when he just needs to be a regular little boy. But, I digress. See? So much to say, so little time..and room.

It’s after 1pm my time, and no call from the school yet. He has an awards ceremony in an hour, and I will be there in the front row, or I’ll have to show someone else out of my reserved (ha) seat. He’s getting two awards. I can’t wait to see the smile on his face! People often underestimate the importance of praising a job well-done. They don’t realize that so many autistic kids want to do well, they want to be a part, to be accepted, and to be proud of what they’re doing. They’re proud of it, so they don’t see why others aren’t. My son will float for getting awards. Such power in saying “good job.” Such positive motivation to say “I like the way you xxx” instead of saying “Why did you xxx.” If only we could teach everyone that.

So what did you do for World Autism Awareness Day? There’s still plenty of daylight ahead, so what’s your plans for the rest of the day? My respite nurse has a sick child, so I won’t be using my respite tonight, which scratches out my plans, but on the other hand, I’m going to take my little guy to Borders to buy Jenny McCarthy’s newest book, Healing and Preventing Autism, and we’ll hit up Seattle’s Best while in there. (Grab her book if you can! She and Dr. Jerry Kartzinel did an amazing piece on GMA this week, despite all GMA’s “experts” refuing what they said. The proof is in our kids though.) Then we’ll come home, make some pizza, and snuggle as the clouds and rain rolls in. Works for me!


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