Autism Watch: 2007

Posts Tagged ‘health

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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We’ve heard that news alert a few times the last few days.

<queue the Talking Heads> “Hold tight, we’re in for nasty weather.”

Scary on one hand, tiring on the other. I think I may have preferred my California earthquakes! I want to take it seriously…I do…but I must admit that I don’t run around shutting my windows and loading the tub with supplies. (I do however, keep the ‘panic room’ stocked in the event we should have to go in there during any disaster, so we’d just have to grab our cells and the dogs..and of course, at least one laptop in the event we can keep internet access. Yes, we’re geeks.)

On the other hand, BB is prepared. Very much so. I didn’t want to tell him about the alert on Monday of this week. He was happily playing and I didn’t <yet> see the need to worry him. The choice was taken away though by yet another EAS — emergency alert system — broadcast. I know they save lives, but they are so loud, they not only get your attention but they startle a sound-sensitive child and send him straight into packing mode.

I hear rumbling, moving, scraping..crashing..”Uhm, BB, what are you doing?”

“I’m packing, Mom!”

“Packing?”

“Yes, if the tornado really hits here, I need to be prepared. I want to be cautious. I have things that are very important to me so I want them accessible in case this tornado is real this time. Better to be prepared, Mom!”

Well, he told me! I let him go on with it, and by that time, I was shutting windows and putting the dogs out for a quick potty before those black clouds were entirely overhead. I peeked in on the panic room and saw what he had packed.

His plush Pokemon collection. (“Mom, it’s irreplaceable, you know!!”)

A change of clothes.

A waterproof jacket.

His favorite pillow and the blanket his oldest sister made him.

His DSi and case.

A pile of art supplies so he could draw pictures.

And my favorite of his piles? His entire Diary of a Wimpy Kid book set! It’s not like it’s fine literature, but it is funny and I credit it with getting BB to sit down and read a book FOR FUN and ask for more. For that, I will be forever grateful.

When we move, now I know I need to be sure those books are accessible and treated with the utmost respect they deserve. And if we ever do have to evacuate or hide in the panic room, you can bet they will go with us.

Gotta go…more rumbling. Might need to save the battery again 😉

Back when BB was newly diagnosed, our social lives took a major hit. At the time, we didn’t care — we were too worried, too overwhelmed, overextended and exhausted. It got better as years went by, with us having a smaller, more focused group of friends and a new idea of what was ‘fun.’ Our priorities shifted and we adapted to the new way of life.

Now that BB is older, we can leave him with an older sibling sometimes. We don’t do it often, but it’s nice to know that there’s the option if something’s a big enough of an occasion, so we’ve got the ‘time out as a couple’ problem covered.

The other problem though, perhaps the bigger issue, is getting the day-to-day, run of the mill, routine errands and outings covered.

Today, BB had a homeschool event. Since we live in a small town, we take advantage of being ‘out in the big city’ to get things done. I had a list in my purse of things I needed to do: another shot at the podiatrist office, Petsmart shopping, a certain candy mold at Michael’s, prescriptions at the drugstore, book dropoff and pick-up at the library, and the gas station. I dreaded the list, so I could totally get that BB would, too, but what choice is there?

As we drove home, halfway through the list (as a few things were here in town), I was thankful I’d been able to accomplish as much as I had on top of the science class, but worrying if I’d be able to finish the rest. They were non-negotiable: books were due, car needed gas, and the prescriptions had been sitting at the pharmacy for days. Each one should have been just a few minutes, but a few minutes here, a few there, and before you know it, you have a kid so anxious and overwrought, you wished you’d scrapped the very idea of taking him along.

Luckily…or maybe because I reminded him that I didn’t push him to stop and have lunch with me so he needed to do this for me and so I wouldn’t have to go back out later…he did fine. Now, fine is relative. It’s “fine” if you think him leaving my car window down and locking it (?) while I was waiting for the pharmacy to fix one of the prescriptions to find me in the store is “fine.” It’s “fine” if you think him yelling at me to hurry while putting gas in the beast is “fine,” and it’s “fine” if I don’t mind him telling me “You know, you could have just dropped your books in the slot and not gone inside.” (Yes, that would have partially worked, but what about the book I had on order? Another autism book, though he didn’t know that part.)

Let’s just say it was successful in that I got my errands done and he didn’t have a meltdown. It was neither fun nor relaxing, and by the time I walked in the door…dogs jumping at me and mail falling out of my hands…I was beat. I piled the purchases, the bags, the purse, the receipts all over the counter as I calmed the Yorkie. Got BB settled in his room. Grabbed a beer…no, not really, but I may have wanted to. Maybe. All the while, I’m feeling slightly resentful that I didn’t get to pick up a decent lunch and that I again had to head home, hermit-style, because BB wouldn’t acquiesce to head into the deli for a sandwich.

I contemplated the resentment as I was balancing the checkbook from the day’s expenses. Maybe not the best time to have a serious thought discussion going on, but I realized that though I’d saved $20 and not endured a miserable lunch out in public, worrying that he wasn’t behaving, I was still having to craft the time around him a lot. Some things are vastly better, and this area is, too, but there’s still a ways to go.

Add ‘Handles social outings with ease’ to my list. Or at least with a semblance of tolerance? How do you do it? How do you meld your acknowledgement that pushing your child too far isn’t fair to him with your need to get out of the house?

 

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.

 

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?

Okay, not really…autism doesn’t really go on vacation, does it?

In reality, I was simply busy and tired of writing about my daily life and finding something that would be of interest to anyone else, emphasis on that last part. I had no witty stories, no clever anecdotes or no epic tales to tell. And very little time.

Not only did the Yorkie require major surgery the week of Thanksgiving, but then my son’s service dog tore his ACL the week before Christmas. Ka-ching. It’s such a turn of events when the service dog requires us to service him, but it was an honor. He’s such a devoted loving animal, it hurt to see the pain in his eyes and the frustration on his face when he couldn’t get up and around. We don’t kennel him, so restraining an 85 pound animal was no easy feat. Thankfully, the Yorkie survived and is doing wonderful; we’re still working on dissolving the stones in the remaining kidney and hoping to avoid one more surgery to take them out, but she’s happy, healthy and a hairy ball of energy who will kiss you to death. I think she knows what she went through and is thankful to be through it all. Big guy is up and around, limping some but trying to be normal; we still have to stop him from his infamous “Charlie Spin,” but soon he’ll be completely back to normal and have a cool scar to share stories about with his doggy friends.

The holidays were good. Too quiet for me, we’re used to hustle and bustle, and having no friends or interested family in this small town made for a different kind of Christmas, but it’s temporary. It’s only a matter of time before we move back to the big city. Now we just have to find realtor #3, someone reliable who really depends on sales for some income. Who knew that would be so hard to find?

BB is having an off day. Didn’t want to sleep in his room last night, he was sad so she slept in ours. I think the last couple of weeks caught up to him. Spending the night at a friend’s house (a little boy remarkably like him, with wonderful parents), going to the movies, long trips to the vet 2.5 hours away, shopping, bright lights, loud noises, weather change, having friends here, it was all a lot and still, I took him to see We Bought a Zoo last night. Boom, it crashed down … and it didn’t help that I let him drink Dr. Pepper and eat Nerds. Don’t judge me, he’s a kid, I threw caution to the wind and let him be ‘normal’ and while later it caught up to him, he had a fun visit to the movies with me and even volunteered to go shoe shopping after! (What’s a trip to the mall without a visit to shoe stores?? Mamas, give me a ‘heck yeah!’) During quiet parts of the movie, I could him hear tic’ing, this odd breathing noise he makes that qualified him as Tourette’s, though we don’t use the term. (Nor do we use the term ‘autism’ around him, but more on his conversation with me in another entry.)

I hope you all had good holidays and are enjoying a relatively calm and relaxing new year. Onwards and upwards!


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