Autism Watch: 2007

Archive for the ‘Health’ 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.

 

I left for a while. Okay, a long while. Things were busy. Things were *mostly* good. We began homeschooling and BB is thriving. We took a trip. Dogs are doing well.

Truth is, I ran out of things to say. Re-hashing my day with BB was losing its appeal. As he does better, which is what we hoped and prayed for, there were less autism-related issues to share. I also got tired of using my blog as a place to re-live irritations by sharing in the hopes that a) others could relate and maybe shed some insight on what to do, and b) maybe the irritations would stop happening.

Ha.

So I’m back. BB is still much better, and each day, we see more and more of him coming out. He amazes me with his humor and just yesterday, a computer animation he put on YouTube surpassed 9,000,000 views. For reals. He’s got a bright future ahead.

I’m still going to share the good and the bad..and unfortunately, in addition to the good, I have some bad.

Some days, when I’m out and about, I run into people who impress me and inspire me. I see kindness in strange places. But sometimes, I see ugliness. I see close-mindedness and “This is my way, so it’s the right way. The end.” I try to remember that not everyone is this way, but when you’re already tired, stressed, or just plain burned out, it’s easy to let the bad outweigh the good, even temporarily.

Last week, I took my son to a long-awaited night at a museum event. We spent the night, along with a slew of other kids that he didn’t know, except one. He was oh.so.excited. They had a presentation and he asked a lot of questions. He likes to clarify rules — maybe it’s irritating to some, but I don’t know, I’d rather he get the clarification he needs rather than just wonder and break a rule, which would have far worse consequences. He also likes to punctuate rules with “Wow. Okay.” or “What?” It’s not disruptive, it’s not over the top, it’s just a far cry from the kid who wouldn’t go to a public event or speak up if he did. I’ll take this BB over the BB of several years ago. If I’d been next to him, I’d have nudged him, but to make a scene by ‘excuse me..excuse me..excuse me..’ to walk up the only aisle, in the middle of the seats, to get to him and tell him to hush? Humiliation and more disruption. I was in the back, where parents usually sit, again, trying to do the right thing.

In comes one of those women, you know, the kind who has perfect children that would never speak out. The prodigies. The kids who can break rules in other ways, and we’re supposed to overlook them.  The kind of woman who sits with all the kids rather than with the adults, oblivious to the fact she’s blocking the view of kids sitting behind her, the kind who thinks the event is solely for her kids and the other kids are just in the way. Come on, we’ve all seen them. Maybe some of us don’t care about their existence, and maybe some agree with that kind of behavior, but I don’t. My child is just that: my child. If I’m there, I will guide. I will discipline. I will nudge. I am in charge, other than the teacher. If you don’t care about their existence, maybe it’s because they’ve never poked your child on the shoulder to say “Stop interrupting!” or because you are easily irritated when others’ kids do something you find misbehaving so you speak up. (If you’re one who speaks up to strangers’ children, here’s a thought: mind your beeswax. If it’s not your house or you’re not the teacher, restrain yourself. If you can’t control your behavior and reactions, don’t expect your children, or others’ kids, to control theirs either.)

This put a big damper on the event. It took me two hours to calm him down. He was angry. He doesn’t like to be touched by strangers, and in my opinion, he has a right to feeling that way. Yes, ideally, he’d be able to better handle it but right now, I have bigger fish to fry. The fact that I got him to an overnight event is a big deal! I can’t downplay that, or let anything else do it either. And I was angry. All the work I’d done was about to get flushed away, all because someone else was irritated by something small and not necessarily even legit. She got to go hang out with her friends and smiling kids, and I was left with an angry child unable to enjoy the cool stuff all around him, a kid who spent the rest of the night trying to block out the sounds because the overstimulation (both physically and emotionally) had him super-sensitive to sound.

No, I didn’t approach her. Should I have? Yes..but to do so would have meant I would have had to dredge it back up in front of him, and that wouldn’t have done any good. Instead, I suggested that we have some type of awareness program as a co-op offering, and that was shot down because, well, it’s acceptable to tell others’ kids to shut up, and if I want people to not do it, or not touch him, he should wear a shirt announcing it. (Okay, so I’m exaggerating a little bit with the shirt bit but the gist is the same.) The response was that I should pre-emptively tell everyone, talk to the leader, and somehow foresee anything that *might* happen and cover it with a list of Do’s and Don’ts.  I’m still amazed that I should know that someone might butt in my business and touch him and/or tell him to be quiet. I mean, really? Maybe I’m naive and people do that all the time…but keep in mind, my son was a stranger to this woman. He was familiar with this outing as we’d gone to many daytime classes there, and he felt comfortable. There goes that! Now I am supposed to sit with him..and by the way, let’s not forget that the teacher isn’t in charge, any parent around has the right to step in, duh! What was I thinking?

/rant off

We experienced a problem, fixed it on our end and tried to advocate so that we didn’t experience it again in the future nor did anyone else. But advocacy is often unwelcome. People don’t necessarily want to hear it. They want us to not bother their perfect worlds or to come out in public where we can teach our kids what they need to do. People don’t want to be inconvenienced. Opening your mind or being willing to show tolerance — which is pushed all over the place in this political campaign, to everyone except the disabled — is not something everyone’s going to do, regardless of how hard we tried.

I will admit, I cried last night. Frustration that I tried and was rebuffed so ‘sorry, too bad.’ Sad that these people walk around, head held high, completely ignorant of the people around them. Upset that instead of making the situation better, who knows if people will single him out now in the future. And if I find a parent went to the venue management? Possible legal involvement. I don’t mess around. Invisible disabilities are discriminated against on a daily basis, and I’m at a loss as to how to change that. Oh, wait, I was told to start a support group. Uhm, yeah, great, where a bunch of us can sit around and talk about how we’ve all been rebuffed? We can come up with all these perfect plans we want, but in reality, they each rely on the rest of the world showing compassion. If we can’t even rely on people to mind their own business or be nice, how can we place bets on compassion? I won’t let it happen to my child again though. No, I won’t go around telling everyone ahead of time — he’s entitled to his privacy and BB’s now at the point where he wants no one to know. I told him that means he has to be on his best behavior, and he’s trying. We’ve also worked with him on responding properly when someone corrects him and/or touches him. There will not be a repeat occurrence.

I’m not of the belief that children collectively belong to a community, or that their feelings/thoughts are any less important than ours. I get that things happen, and that in groups, he very well may be disciplined again by a, ahem, well-meaning adult, but it had better be someone that knows him and has implied permission..not someone whom he just happens to be sitting near for the first time.

Onwards and upwards, I hope?

That’s what BB used to scream at me any time I used the word “sorry.” For anything. It didn’t matter if I told him I was sorry that his toast was too dark (aka had a tinge of color other than white) or if I said I was sorry that he still had to do homework. “Sorry” was unacceptable.

So I won’t try to use it here. Even though I am. Sorry, that is.

Sorry I haven’t blogged in a month. Sorry that I’ve been sporadic lately. Sorry that I’ve been a much better blogger when my son was worse and I had less time than I do now.

Sorry.

In the last few weeks, we:

— continued homeschooling. Score!

— had to make a mad dash (aka 2.5 hour drive) to a critical care animal hospital when our pampered Yorkie was labeled ‘life-threatening’ and she needed special care

— had an open house, showed the house a few times, and lowered the price (everyone loves the house, not the price…)

— took a two-day trip that included 16 hours of driving within the 41 hours from leaving our house until we returned

— made some friends in our new locale

— started soccer and won two out of the first three games! (another S C O R E !!)

And then there was work. Crazy. Busy. But still a job I believe in.

BB has had his days. I made him drive back/forth with me to the doggy hospital a couple of times. 2.5 hours in a car, one way, with an unhappy verbal autistic child is not my idea of a fun drive, but what do you do? There are days he doesn’t want to do his schoolwork, but he rises above it (most times?) and does an amazing job with all of his assignments. In particular, he loves mythology (and volunteers to read it) and science experiment. He’s not big into ‘crafting’ so I have to choose my hands-on (scissors, glue, crayons) projects carefully. But, he is big on telling me about everything he learns. He can give the best running narrative on a topic that you’ve ever heard, complete with his own little autistic spin. Fascinating.

Me, I’ve been working (did I say that already?), still keeping the house in tip top shape for showings, and trying to ‘live’ as though we were just living here and not moving across country any minute. I’m working on my business more, including business management, graphic design, Javascript and PHP (I know how to par-tay!), as well as the meat of it all, cupcakes. Instead of just focusing on good cupcakes, I’ve been focusing on healthy good cupcakes. Gluten-free. Casein-free. Lower sugar. Lower fat. Good additives. Yet, throughout all of that: delicious. Last week, I made pumpkin-butterscotch cupcakes (with a homemade mix of cream cheese frosting and buttercream frosting that has everyone raving and asking for the spoon and a place to hide) and you wouldn’t know it, but they were good for you. Yes, really. Cupcakes that didn’t make you sorry you ate breakfast, cupcakes that didn’t make you re-think eating dinner so you wouldn’t go over your calorie count. And those cupcakes are just the beginning. The goal is a revolution of items that fill a need — your sweet tooth, the thing that almost everyone has, and some people in a bigger way than others — while fulfilling a want, a way to cut your calories, your excess carbs, and your sugar and fat contents. Yum.

Stay tuned.

And my apologies for my absence. I had a lot of good reasons, I promise.

BB woke up this morning in an awesome mood. He woke up before me, in fact, and woke me up. (Not something I view as his best choice of the day, as I was having a really cool dream about traveling…) He was being uber-sweet, turning on my coffee pot, and he even got me a big coffee mug and the creamer. Ahhh, life is good. A relaxing morning, a promising day at work, schoolwork planned and prepped, good coffee and a happy BB.

Then it happened.

Mom, I have a headache.

What level? 6.5.

I give him an ibuprofen and get him settled on his bed with a movie.

Thirty minutes later, it’s 7.5. He decides he wants to forego the next prescription in his migraine arsenal, so I let him be in charge.

Thirty minutes later, it’s still 7.5. Sorry, BB hon, you need to think about the pill.

“Mom, it makes me dopey.”

Yes, son, I realize that, but dopey or pain, out of the two, isn’t dopey better?

He takes the pill. Cut in four tiny pieces.

He snoozles a little, watches more tv, and two hours later, he’s out of the room, bored.

Then what I call a depression cycle rolls in. He sobs, he cries, he’s bored, this day is bad, it’s awful, it stinks, it’s not a good day.

Bud, I’m right there with you. Not only do you feel like crap, but there’s a work issue that’s out of my hands. Sometimes, being a manager means you have to make or take part in decisions that are difficult. Things that have nothing to do with you personally but are part of the job; in management, decisions are made that are in the best interest of the company, and they’re not always pretty. I guess it’s human nature to shoot the messenger, but it can really make you wonder sometimes why people don’t understand that or want to make you out to be the bad guy when you’re not operating in a vacuum. I’d like to be all-powerful, in charge of all the things I can do each day without getting approval, different from now, but then again? Maybe not. Oh well, it’s a job and I’m fortunate. This job allows me to help my family and be home with BB, and he desperately needs it.

So what do I do? I turn off my work machine. I get out the popcorn maker and get BB settled on the couch. Turn on On Demand, rent Rio, and laugh together. Perfect medicine for both of us.

Autism has brought me extremely close to my son. It’s not something I’d ask for — my other kids obviously can’t get the same amount of attention, and it’s not fair and I hate it daily — but you take what you’re given and you move forward with it. I can’t afford to let a bad day at work get me down, and it’s a three-day weekend, time for a lot of prayer, relaxation, hanging with the kids and time with my best friend, my husband.

Migraines, stay away, we’re done with you here for a while. Give the kid a break, okay?

It’s day 4, and we almost didn’t make it to school this morning. After yesterday’s headache, he was ‘off’ all night. Edgy, easily irritated and seemed unable to focus on one thing for too long. At bed time, we had a major meltdown on our hands. Apparently his service dog hasn’t slept well the last two nights and it’s keeping BB up at night. I knew about this, but I didn’t know it was to the point of near hysteria that he’d have a third night like this and keep BB up again. After 15 minutes of him yelling and crying, hitting himself and us having to stop him and try to talk him down, he decided to listen to some of our suggestions for keeping his dog happy at night, thereby allowing him to sleep.

It took a while, but with some furniture rearranging, we moved the carpet over to one side and angled BB’s bed so that the service doing, who we’ll call “C,” was only able to roam one side of the room, and with the carpet there, BB wouldn’t be able to hear his nails on the hardwood floor. C’s bed was over there, and BB could still be near him without the noise. We then watched Dragon Ball Z Kai together (not the world’s best show, but he loves it) and he went to sleep, 30 minutes later than normal, but it was barely dark out. He insists on being in bed no later than 8:30, some nights as early as 8:20, so I was worried this would upset his sleeping pattern but he seemed fine.

Fast forward to 6:15am, when I wake him for school, and I hear him moaning as I walk down the hall. He said he’d woken up about 30 minutes prior with a ‘super bad’ headache. I get him a pain reliever immediately, massage his head, offer him water, and do all I can to get him to be willing to go to school. That’s where I felt like a really bad mom, because I don’t want to leave my bed when I have a migraine, yet the schools out here have the world’s most ridiculous policy for attendance. It doesn’t conform with the state’s policy, so we’ve pushed it a bit as the state allows for 10 days of unexcused absences, and four that you have a doctor’s note for, which is fair — I really do believe kids need to get to school and it’s important to make rules — but what’s not fair is that our school starts threatening truancy at day four and makes you attend an attendance meeting. You quote disability laws and they state that we have to have a document on file. Uhm, I think the IEP and medical diagnosis of autism and migraines should suffice, yes? But no, we have to have a note each year on file and even then, they want to make sure we’re ‘being truthful’ and not taking advantage of that. So you end up taking your child to a doctor for a mild cold that’s given them a temp of 100, not enough for a doctor to do anything more than write a note that you were there and enough for you to pay the bill and expose your child and yourself to even worse illnesses.

I digress.

I finally got him up and moving this morning and got him out the door..a few minutes late and with him being oh so slow that it was really hard not pushing him to move faster. After all, tardies count against the 10! We have to weigh the balance between being a mom not making your sick child go somewhere that he’ll only be in pain, and the school hassling you. I partially think it’s the area — we’re ex-homeschoolers and we believe that while schools are important, they’re run by humans and parents have the utmost choice, and people locally tend to believe what school staff says without question. I also think that I’m just burned out on years of expectations that are unfair. He’s sick, he shouldn’t be at school where it’s only going to make him worse. If school is making him this anxious, it’s not up to me to just continuing to increase his medication, but to them to find out what they can do to decrease the anxiety.

So I sit and wait for them to call and give me an update. I’ve already spoken with the nurse first thing, but it’s up to the teacher to let him go to the office if his head hurts, and if she doesn’t let him..well, I’ll be there in the office first thing, but that won’t fix the day for him. For him, when he has a problem with something once, he’s put off from ever trying it again. Let’s just say that the day that It’s a Small World at Disneyland broke and we were ‘trapped’ for 15 minutes, five years ago, assured that we’ll never ride it again. I liked that ride.

For those of you dealing with anxiety, what do you do? BB’s headaches were far less frequent over the summer, in the environment without bright lights, too much noise and stress. Now that he’s back at school, we can see him getting stressed and anxious, and we feel the headaches are a side-effect. We want to try something to help — biomedical is the first goal, followed by medication but only if absolutely necessary. How do you handle autism and anxiety? Where do you see it cause the most problems?


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