Autism Watch: 2007

Archive for the ‘Parenting’ 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!)

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?

 

Yesterday was BB’s six month dental exam and cleaning. I’m not sure who dreads them more — him or me? Hmmm, me. Yes, definitely me. I have to drive him down there, almost 1.5 hours in one direction, then all the way home in awful tourist and end of the work day traffic.

If you’ve been reading my blog for a while, you know dentist appointments and BB haven’t always gotten along. So what changed? Finding a new dentist. It may be work, it may take a long time, you may have to pay a little out-of-pocket by going out-of-network on your insurance plan, or you may have to drive a long time, but it’s worth it.

BB used to be afraid of the dentist. Hated it. Now? “When are we leaving, Mom?”

However, it’s still not always good. For some reason, he gets anxious about it and he’s kind of a boogar by the time we get there. You know, the kind of boogar where the other parents in the waiting room look up from their magazines and try to surreptitiously check out what the mouthy kid looks like or if the mom looks abashed. (If you looked, yes, I was abashed. Very much so.) The mouthy kid looked cute, comfy with his bandanna around his neck (should he need to become incognito, you know) and bored, playing with the stress ball in his hand.

It continues in the dentist’s chair. I answer questions about his dental history and habits while he’s being worked on, and he starts to squirm. More and more, in irritation at my responses. Finally, when he gets a clear chance to talk, “Mom, you don’t know what you’re talking about. You’re not in my mouth. Let me tell her.”

Sigh.

My sweet boy disappeared halfway through the drive to the dentist and only started to re-appear about two hours ago. It only got worse from there, though he did cooperate for the rest of the exam, the cleaning (minus the fluoride, thank you very much) and the x-rays. By the time we were 30 minutes from home, he wanted a new family, he didn’t like me and I was NOT his mom anymore.

Who knew?

It was a long night, made worse by the fact that I’d postponed an appointment to the podiatrist for my plantar fasciitis and my foot was killing me. The husband made dinner, and I sat with ice on my foot. Exhausted. Totally drained from his behavior and the rush-rush-rush of the entire day.

Today, he didn’t get better until I finally sat him down and told him he could not yell at me anymore. I sat there, with him unhappy at my presence, explaining why I wasn’t going to allow him to yell at me, or anyone else, anymore. And as for the constant complaining? Three per day. Period. No more. You complain a fourth time and the computer gets taken away. Same consequence if I have to remind you more than once not to yell at me.

I realize it’s an issue of control. He wants his room to look a certain way so when I move the water bottles or turn the nightlight off, I’m changing the way he wants it. When I tell him it’s school at 10am today instead of 10:30am, he doesn’t have control and it’s a change. I get it, really, but that doesn’t make it okay. It’s not an excuse to yell and be mean. So we talked about it, and beginning next week, after we’ve had a couple of uninterrupted days to reinforce the new rules, we’re starting a behavior program that I hope will address his anger and control issues.

I have hope. I just know it won’t be easy. He’s smart and he recognizes that he’s being mean…it’s just after the fact. Tonight, he stuck a note on the door saying he was sorry. Cute, but not enough. It did, however, open the door for him acknowledging that he needs to find some better ways to cope. He actually googled it, he said. I believe it, google is a big tool for him, and he uses it as a springboard for further research and study. If he’s interested, get out of the way, he will do it thoroughly.

Tomorrow we have a homeschool event…same place that “The Issue” happened a few weeks ago. I told him we’d ignore her and it wouldn’t change anything. He won’t let me sit next to him in the class, so maybe he’ll sit in back with me. Not sure. I want him to learn from it, but not be afraid or let her intimidate him. He doesn’t need to stop asking questions, he just needs to be mindful of how he does it. If he does it wrong, I will address it, as always. We’ll see how it goes. If nothing else, I’m super-proud of him that he’s not letting her possible attendance influence him going again. Way to go, BB.

 

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.

When BB was diagnosed, we were warned to be careful and keep an eye on him every single second. Ha, like we didn’t know that already. Kids with autism are frequently runners, escape artists, little people who can get away from you in the blink of an eye. They also often display an abnormally low level of – or no — fear. We parents could be running after them, yelling about the dangers they are closing in on, and they don’t bat an eye. We, however, have a permanent twitch in ours.

In keeping with that fear, water doesn’t scare them. A large, heartbreaking number of children with autism drown each year. I heard that and immediately signed BB up for swimming lessons. We didn’t have a pool, just a spa, but my best friend does. We wanted him to be able to swim with our friends and know what to do if he got too close to water anywhere else. Little did I know, this was an area where BB was anomaly. Read on…

We got to the pool early that first day. I don’t know if he had any clue what he was in for, other than me having told him that I’d signed him up for a Mommy & Me swim class. The reaction to that was pretty typical for the time — no real reaction other than to share his unhappiness with having to leave the house. Getting him in the pool, backpack in hand, was no easy feat. He was still having, ahem, potty issues so I had to be sure he was in the appropriate under-attire, and he was weird about shoes, seams and going anywhere without a shirt on. (That didn’t stop him from stripping if he was having a public meltdown, but that wasn’t the only thing during those years that didn’t make sense.) He made sure that I knew, along with the neighborhood, that he was not into this class. That should have been my warning.

He was curious by the time we arrived at the rec center five minutes later. He was cooperative, if hesitant, about going to check out this pool. Then he saw it. WHAM-O. Interest kicked in. “Don’t run by the pool!” So what do I do? Run by the pool to catch him. Yes, thank you, I know the rules, you can stop staring now, he’s not deliberately ignoring me..

We settle our stuff down on the lounge chairs and wait for the class to start. I was counting minutes to have it start soon, as he seemed interested. Finally, the teacher calls us over. Five other moms climb into the pool with their smiley children…all younger than BB. (Bear in mind, we were within the required age-range.) Darn, I even know one of them. I begin to climb in and what? Huh? What’s that awful sound?

BB, screaming that he didn’t want to get into the pool.

Several minutes later, he’s in the pool. Splashing. Kicking. Unhappy. The teacher’s fine, and the only mom who seems impatient is, of course, the one I know. My neighbor. My next-door-neighbor, a woman who liked to talk. (I’ve since moved.) About people. I am trying to show BB how good the water feels, how it’s like his bath, how he can splash Mama in the face. Slowly, I win him over. The teacher continued onwards with her lesson, thankfully, taking the attention off of us..which was good given that the momentary break was brief as the teacher began having us interact with our child and the water with specific steps that we needed to mimic.

It didn’t take her long to realize that we weren’t going to ace the class and that she might just have to talk a little louder. The 30 minutes went v e r y slow and I was mentally exhausted. BB was physically AND mentally exhausted. Yet I was not to be deterred. We went back every week, sometimes with Dad in the pool with me. The teacher didn’t care, and a couple of other dads did it, since there was no rule on which parent was in the pool. Reinforcements. I’d like to say it got better, but it didn’t really. However, we ‘graduated.’

I signed him up the next year for a level up. The first step was to practice jumping in the water. Uhm, no. He would not do it and the teacher had to have him handed in to her, much to BB’s unhappiness. Once he was in the water, we were not allowed to interact, and the assistant helped BB in our place. It was during this time that we learned that different children aren’t always welcome in public events. We already knew that a melting-down child wasn’t acceptable in Target (and a list of other places) and that people would literally step over a runner who lay on the floor humming, but this was the first class where I couldn’t be with him, aside from his special day class. I’ll never forget the mom who sat down in the parents’ area and said “Did you see that kid? He won’t even jump in! What were his parents thinking putting him in this class?”

She was the first person I ever took one of what we jokingly refer to as The Card. I carry cards in my purse to educate others on autism. I’ve had to use a few throughout the years, gentle ones that explain what autism is and that he’s not trying to be a pain. But this one? It was a little abrupt and stated, in short, that we are trying our best so please don’t interfere…and by the way, your comments are kinda rude.

You should see what she said a few weeks later when his licking phase kicked in.

Fast-forward to now, where he’s 11 and loves to swim. He loves when we go to the beach. You’ll find him in our pool daily when it’s warm enough, and when it’s not, he’s wishing it was. No fear whatsoever, and he’s quite the swimmer. The water calms him. The activity tires him out. For a kid that doesn’t sleep without Melatonin, this is a big deal.

Today he’s been waiting for his big sister to come home. Such patience! He’s had his trunks on for a while and his toys at the ready. The splash when he jumps in always makes me smile. I wish I could look forward to thinks with such excitement and anticipation. He’s come a long way, baby.

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?

I opened up my blog page, thought about the title, and then realized, why am I thinking on this? I’m definitely over-thinking this. So I decided to cut to the chase: this entry is about school and autism. Voila, the name of the entry.

First, the disclaimer: I’m tired and lacking creativity.

I slept well last night. Went to bed at 11:30 after watching the two-hour finale of Masterchef (yay for Jennifer!) and I passed out as soon as the TV was off, but 5:30am comes early. My mornings consist of getting BB ready for school, signing in to work, working, taking him to school, and working until I pick him up. Then I work another 30-45 minutes or so. I’m used to that, but when you’re dealing with your school every single day, and dealing with your child venting about school the rest of the time, it’s tiring. It sucks your creativity like a Dyson picks up dog hair. Sorry, BB’s service lab sheds like you wouldn’t believe so it’s an analogy all too in-my-face.

Moving on…these last couple of weeks have been the proverbial rollercoaster. We have a great day and things look good. The next day blows big chunks and he doesn’t ever want to go again, once the anxiety-induced migraine goes away and he’s willing to talk as opposed to crying and yelling. Fun stuff.

IEPs are good things to have. Nice handy legal documents that explain how things should work and give people guidelines. But much like a restraining order and a persistent abusive ex, it’s only a piece of paper that totally depends on people to follow it.

One teacher/administrator who doesn’t feel the accommodations are right, doesn’t want to do the accommodations, or just has assumptions about your child and the diagnosis can blow the whole thing.

Long story short, that’s where we are right now. We’ve got a wonderful team around us, albeit a busy one, and we have one person in particular who gets BB. And one person who doesn’t…and doesn’t seem like she wants to.

BB is burned out. I’m burned out. Dh is burned out. We’re at the crossroads of: This is Your Last Chance to Make it Work Road and Homeschooling Highway. Not a place I wanted to be but then again, I never wanted to be a part of the autism club either.

BB is happy tonight. He is positive towards tomorrow, so I will be, too. It can be a hard thing to tell yourself: think positive, don’t let the last two weeks of hassles get you down, shrug it off and have faith. But I’m trying. Trying hard, and letting BB lead the way. He teaches me more than anyone I’ve ever known.

BB has a new friend. Well, not entirely new — they met each other a year ago in organized sports we’d signed him up for and they’ve seen each other at school here and there, but it has ramped up a lot in the last few weeks as they’ve seen each other for various events, mainly BB’s friend taking him somewhere. Today, we invited his friend over to spend the day, and wow, is it better than Disneyland and the zoo and a computer game store all wrapped into one.

BB has some social skills. Now, that doesn’t mean they’re good social skills, but he’s trying. He plays well for a while, taking the lead, and when he doesn’t get his way anymore or he’s just overwhelmed, he heads back inside to play on his computer. Alone. He wants to have his friend, so after I remind him that leaving him alone out back won’t generate return visits, he heads back out. After a sigh. But I think I made a dent.

His friend is being picked up any minute now, and it’s probably just about time. BB’s mood is wearing thin, the kind of thin where we almost are at a loss and don’t mind if he finds that spending some time in front of his tv watching his DVR’d episodes of Dragon Ball Z and Pokemon is what he wants to do next…for an hour or so. It’s the kind of thin where we’re afraid he’ll offend someone by his impatience or he’ll be rude under the guise of being ‘honest.’ Still working on that one.

Our next step is probably Cognitive Behavioral Therapy, in addition to more advanced social skills training and behavioral therapy at school. And for me? Other parents to talk to, those who can understand what we deal with daily and talk to me without judgment. Oh boy, do I need that…

Monday’s looming large now, and with that comes an early morning. 6am rise and shine and at school by 7:15 in time for his new ‘job’ helping the school on a special project. Just like any parent of a school-aged child, there’s the regular routine, and there’s the feeling of not looking forward to the next five days of rushed mornings, packing lunches, signing notebooks and listening to him vent the entire ride home each day about every.little.thing that occurred. (Who needs a tape recorder when you have BB? I get the perfect play-by-play minus the video, except his explanation is pretty detailed and I can usually envision his stories.) It’s only 6:22pm and I’m already tired just thinking of it. Or maybe that’s just the twitch in my right eye coming back.

As our kids grow, in some ways things improve. In some ways, things get worse. When I can’t hold him and restrain him enough at 75 pounds, what happens at 85? Years ago, I went to a parent support group not long after BB was diagnosed. What I expected was everyone talking about their experiences and people nodding and then going on to the next person. What I needed was being able to hear other moms of kids BB’s age talk about their situations and confirm we weren’t on our own or that we weren’t the only ones who had to make nothing but dairy-free pancakes cut in perfect squares with 3.5 tbsp of maple syrup in order to prevent a pre-school meltdown. What I got was a room full of people all dealing with spectrum kids from severe to mild, sharing their stories while others commiserated, laughed or gave advice. Sounds great, right? It was, until we got 1/4 of the way around the room and reached the parents with kids in high school. Their stories were scary. I was so busy getting through one day at a time that the future hadn’t occurred to me, so when I heard more and more parents talk about how things were just getting worse, how their child wouldn’t get into the car for school (or get out when they did manage to cajole him into getting in) or how their child yelled and they had to call the police to stop a rage, I was devastated. The cookie I ate was boiling in my acidic stomach as my eye twitched a little faster. I think I stopped breathing for a several seconds too long, and I wanted to run to the bathroom, the foyer, the car, anything to get away, except I was in one of the seats that allowed for no escape without disruption. So I sucked it up and let my mind boggle and ‘go there’ while I listened and realized that it was all just beginning.

So many things are better since that day. I have a boy that’s often indistinguishable from his peers for a while, unless you look close, and he’s no longer hurting himself…often. But that doesn’t mean I don’t worry about the future. I know the mantra is to not worry beyond today, as each day brings its own worries, and to let go and let God, but that’s a work in progress. I too am a lot better since that day, but I’m still Mom, and I still have to remind myself that worrying doesn’t help, action does. Each day, more action to attain more improvement, and the end goal? Happiness for BB. And not just on days we visit Disneyland with the coveted passes I’ll be buying within the week we move back, but all days.

Sometimes, when things are good, we can go days without really thinking about it. The word “autism” doesn’t even enter my head on a level where I have to focus on it, because so many days, that’s just how BB is. I don’t see him as autistic or see his odd behaviors or problems as autism, it’s just BB. But some days, it hits you. Bam, the kick in the stomach that reminds you: my son has a disability.

Autism.

It hits you hard and you almost have to remind yourself to take a breath, because you hadn’t thought about it that way in a while. Maybe it’s just me – maybe I compartmentalize and some might say that’s a bad thing. Some might say “Well, how bad can he be if you are able to forget,” so let me clarify — it’s not that I forget, it’s just that I see him as his own person, just the way he is, and I’m so used to his eccentricities, his sensory problems, his OCD behaviors and the meltdowns that I don’t focus on him being a child with autism. I just see him as a child who needs my love and attention in some different ways.

Yesterday was one of those days. On the heels of last week, when BB refused to go into the school in the morning, and he was a stressed, anxiety-ridden little boy who visibly shook when we mentioned school over the weekend, I didn’t figure yesterday morning would go easily, but I also didn’t expect it to go like it did.

Long story as short as possible, we went to school, with the homework the assistant principal had given him, basically a list of all the things that bothered him, things he wanted to discuss and have fixed. It was a well-written list, big words, proper grammar and spelling, but it still wasn’t pretty. He was candid, almost brutal, in his explanation. He doesn’t like it when someone touches him unasked, so he didn’t hesitate to name names of those who didn’t abide by this rule. (But I have to say, if you have a child with autism in your class, you should also know enough to not just touch them unbidden, so I didn’t feel sorry for those whose names were listed. If you haven’t taken time to learn about autism, knowing you have a child with it in your class, you aren’t being fair to yourself or the student.)

BB handed the list to the AP, and turns to head back to the car. Uhm, no, baby, you have to go into the building. All heck broke loose from there. Reminding him, as quietly as possible, that he wants to be seen like everyone else, so falling to the ground and trying to run away will make him stand out didn’t work. Four staff/administrators later, we were still there. Cars had all gone, and this was when it was a blessing that I have no friends here and neither does he. (Small towns? Not always friendly to newcomers beyond the hello, how are you. And if you’re different? The stares and actual “wow, I’ve never seen someone like you before” comments abound. My daughter’s blue streaks in her hair for Autism Awareness month? Mouths would drop open.) Because of our lack of attachment to anyone here, we were just another group of people on the sidewalk thankfully.

However, when we were still there 45 minutes later, BB in the car after us having given up, my stomach was in knots. My left arm had no feeling, as I’d used it mostly to hold him to me rather than running away. The AP doesn’t believe in dragging children into class, nor do I. If he’s going to be miserable outside, what happens inside? Is it fair to him, and if it escalates, we put him into the position where he could get even more in trouble. So back to the car he went.

This afternoon, we have an emergency IEP. Plans for what to do to make him willing to at least go to school for a modified schedule, for social purposes mainly, will be formulated. We’ll be discussing things that will motivate him to go into school, even if it’s computer-based projects or helping someone out. Then we need to work on friends. How to get him to make friends without the adult intrusion he doesn’t want?

Then we get to discuss ABA and social skills services. We aren’t signing anything that doesn’t include both in writing. Now that they’ve seen the good, the bad, and the ugly, they are aware that a lot goes on behind the surface. They realize that while he may look ‘normal’ quite often, there’s a whole new world in his brain. His thoughts and feelings aren’t obvious, but they matter, and we have to not only help him adapt, but we need to teach him to adapt, and make some adaptations for him as well. Medication is a consideration, but if the problem is mostly happening at school, I’m hesitant to biochemically change his behaviors and/or personality when there’s other options to approach first.

Think happy thoughts for us. Not only is our house not sold yet — four weeks and not one showing — which makes me discouraged and sad, being stuck in a place where we have no friends and don’t want to live anymore (for new readers, we’ve only lived here about 14 mths and we have no close family here either) but now our son is showing signs of major regression and I’m just seconds away from developing a tic again in my eye. It’s not about me, and I don’t want to make it about me, but we could really use a break. BB needs help, and he needs love and acceptance. We can shower him with love, but I can’t buy him the acceptance and the help relies on others.

I hate saying “my son has a disability” but yesterday’s issues really drove it home. Whatever else is going on in our life (such as planning a move that we’d hoped to still make this year) can’t be the focus. BB has to be the focus. Kind of a kick in the pants, and maybe we needed it.


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