Autism Watch: 2007

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?

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!

In a perfect world, our children would go without nothing. They’d get every treatment and/or service they need, and we’d not have to pay anymore for it than anyone else with a disability or medical concern, regardless of income. However, as we all know, treatment for autism is still considered ‘experimental’ in many forums, other than ABA, and services are most readily available for those with unlimited bank accounts. For the rest of us? We hope and pray that someone will provide something, anything, and we become the world’s biggest advocates in order to make that happen.

Being an advocate can make an introvert a public speaker. It can give a shy person who doesn’t like to talk to strangers an eloquent speaking ability. It will make a low-key, laidback “go with the flow” mom get on the phone each day and push, in a way she never has before, for answers, and she won’t settle for anything but the right kind of answer.

This is good, right? Well, yes — because if we don’t advocate for our kids, no one will. But, there is a reasonable limit and no matter how desperate we are, I think we need to realize when we’ve reached it.

Today in a group I belong to, someone asked what kind of help they can get on vacation: could they require the hotel to provide a chemical-free room? Could they require the hotel restaurant to provide a nut-free environment? Could they require the state to find a place to find services for their child while on vacation, as in speech and O.T.? And my favorite, could they require the state to provide respite so the parents could go out alone.

You could have heard a pin drop.

No one answered.

There was a couple of coughs and throat-clearing sounds, but no eye contact with the woman who asked the question. It was clearly a mix of “I am at a loss for words” and “I can’t speak for fear I’ll say something I can’t take back.”

In the end, a calm person spoke up and said “Good luck with that. You’re on vacation, something most of us would give our right arm to take, so if it was me, I’d probably be super-glad I could take vacation and sacrifice the week of services.”

Other responses popped in my head: “It’s vacation, no one’s making you take it, why should the state be liable for anything? If you don’t want to miss out, don’t go.” But I didn’t answer.

Somehow, the conversation quickly changed to “Vacation? Cool! Where are you going?”  At first, I was relieved, ahh, re-direction, now she’s changed the subject, no one has to address it, and it was done so politely, she can’t take offense. Then as I thought more about it — and got irritated at her question — I realized that the goal of at least one other parent was to say exactly what I’d been thinking: vacation, an optional thing you don’t have to take, enjoy it, let your kid be a kid while you’re out, and if you don’t get a night out alone, oh well, it’s vacation!!

Then surprisingly, two  moms started making suggestions — call this number, ask this place, etc. There was obvious discomfort that we’d gotten back to the topic. Some people were “mutter mutter, I wish I could afford a vacation,” which was totally off-topic, and others were “Why are we helping her with this when we’re talking about VACATION? We’ve got people here who can’t figure out how they’re going to get through the next day because their child is still in diapers at 14 and the self-injurious behaviors make it so they can’t leave the house to run to the store, much less go on vacation.”

I stayed quiet. I knew no good could come of my contribution then, but I’ll share it here because the more I think about it, the more I think I did a disservice by not speaking up. Sure, it may have been seen as “tsk tsk! She deserves a vacation like everyone else!” but come on, let’s be realistic — no one ‘deserves’ vacation. Yes, everyone deserves to be able to relax, but a vacation is indeed a luxury. The state is not required to jump through hoops to keep your child’s services at three days a week if you voluntarily choose to leave the state; nor are they required to provide you a babysitter so you can go out at night.

Before I had BB, I took vacations. We have three other children, and as BB is six years younger than the youngest of the sibs, we always had children along with us. We didn’t get a night out away from them — a hotel babysitter, IF available, was cost-prohibitive. Plus, we were already on vacation, did I really need to have that added luxury? Nah, I’ve got a lot of years ahead of me to come back and do things I can’ t do with kids along.

This is where I think our requests take a nasty turn. We are definitely in the right when we request things that keep autism services on par with the rest of the medical-needs community; however, when we want MORE than others get, when we see ourselves as more deserving or require things that make life easy instead of just being necessary, we are not only taking money from an already too-small pool, but we are becoming one of those parents, the kind that make people say mean things and it makes it harder for the reasonable requests to be granted.

Flashback to a couple of years ago, when I spoke about a friend of mine complaining that she had to take her son to school each morning. “I have to get dressed!” Wow, poor you. So she made a huge stink and got the local district to bus her child to school each morning to the school she insisted he go to, even though there were many schools closer. Not only was her son on a bus for 40 minutes, but she negotiated it that on days she decided to get dressed and drive him, she’d get paid for every mile. Wow. On one hand, kudos, you must be a heck of a negotiator and the school is a pushover; if they agreed to that, then it’s their problem. On the other hand though? Come on, you are responsible for some normal parenting things and if you choose to move so far away from the school, why is it the school’s problem?

Those are the parents that give others a bad name. I want to be seen as an advocate, not a ball-busting bitch. I want to come to the negotiation table with people who aren’t defensive just knowing they have to meet with yet another parent; I’ve had them tell me before, on our first meeting, “Thank you for being reasonable. We do the best we can, and while it’s not always enough, we appreciate that you’re not yelling at us.” It always amazes me, because I don’t leave that room until my son gets what he needs — but it’s about him, not me, and I think sometimes we forget that. Parents of kids with cancer, heart problems, CP, etc., they don’t get free babysitters, zero co-pays and no deductibles; they have to drive their kids and if they go on vacation, they choose it around appointments or they don’t go. Why are we any different?

“But my son has special needs!” It’s not a weapon, and it shouldn’t be used like one.

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