Autism Watch: 2007

Posts Tagged ‘meltdown

I was off work today — freebie day from upper management, yayyy! — and decided it was a good day for BB and I to have a lunch date. We’d considered one of a few local venues but with it being rainy, any tourists in town will be inside, crowding those venues. Not a good idea, so we opted for food. I wanted to expand BB’s food interests so I chose a local Asian restaurant, one that serves food from four different countries. Score!

BB chose two different kinds of sushi rolls (both spicy) and was looking forward to trying them with chopsticks. Just as we were served our soup/salad, a trio came in to sit in the booth behind us. Like many people locally, they were very loud. We have yet to figure out why so many people here are loud. It’s almost painful at times, and you find yourself stepping away, appearing rude, while they have no clue they’re talking much louder than they need to be. This trio was giggling at a glass-breaking pitch, and I watched BB begin to shrivel on his bench. Hands tightened up into little balls. Neck shrunk onto his shoulders, veins standing out.

I tried to distract. I joked about the silly names on the menu (as BB told me it was impolite to laugh at others’ food names) and grabbed any item on the table to try to redirect his attention.

No dice.

He wanted me to ask the management for help, so I tried to explain to him that it’s just not done that way, and that people don’t necessarily realize they’re loud. We had quite a conversation about social skills in public places, how management could handle it, how we’d handle it if we were management, and so forth.That worked for a few minutes. Finally, he’d had enough. When it got to the point where he was going to blow if we didn’t leave, we moved to a different booth. We picked up all our stuff and went to the next one over, the furthest available booth.

For about 30 seconds, blessed silence. Ahhhh. Problem was, it wasn’t that we’d moved far enough to not hear them or that they’d seen us and lowered their voices. Instead, they gestured and whispered about how we moved. Then bam-o, they began to talk normally again. Not a blip in their decibel level. The waitress came over and asked us what happened, and we explained. She was nice, acknowledged the sound, but that was it.

Thankfully, food came soon after, so I began to show him how to use chopsticks, what each of the items on his plate was and what to do with it. Yum!

In the end, it was disrupted somewhat but still a good lunch date. BB learned some new things and tried some new things. Success!

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.

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

Then it happened.

Mom, I have a headache.

What level? 6.5.

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

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

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

“Mom, it makes me dopey.”

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

He takes the pill. Cut in four tiny pieces.

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

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

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

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

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

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

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.

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

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

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

I digress.

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

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

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

Can I scream that any louder?

Maybe I’ve been dealing with autism for a long time, or maybe I’m just hanging with the wrong people, but there are days I want to block myself from anything and everything that is autism other than something related directly to my son. Ever feel that way?

What inspired my rant is when a parent I have known forever has an adopted son with autism, and he’s not enjoying ESY. (Extended-school year.) I don’t blame him, is what comes to mind. If he’s that unhappy and throwing tantrums each day, grabbing onto mom as he goes out the door and there’s no real ‘school’ during the summer, maybe staying home with mom is more beneficial. But I don’t say this. I can’t say this to this particular friend, because she is mired so deep in her child’s mild autism that she doesn’t realize that each and every conversation is about her son. His tantrums. His sensory issues with bright lights. His hate for clothing tags and his dislike for food that is square. His obsession with neatening up all the books on her office shelf every day. You know, the same types of things most of us deal with every day, so I can relate. But what I can’t relate to is her incessant negativity. I can’t tell you the last time I’ve heard anything positive about her beautiful red-headed green-eyed boy who, like BB, has a vocabulary that stumps some adults and who can tell you each and every thing about military aircraft. I don’t hear about how he just had photos accepted into a gallery in their town (as dad shared his photos one day with the owner, so his son is the youngest artist on display there ever!) or how his school teacher is cooperative and easy to work with, or how he can dive off the diving board into the pool barely making a splash. If you talked to her for a long while, chances are you wouldn’t hear any of the above unless you talked to her husband too, as I did to learn all the above, but you’d know how he’s still not potty-trained completely and how he doesn’t sleep at night. Oh, and he has an obsession with flicking his nose. (Not picking, flicking it in this odd way that’s completely eccentrically cute though I don’t know how his nose isn’t sore! Thing is, she sees it as one more thing she has to fix, and while I relate, come on, give the kid a break already.)

He’s her son, not mine. I don’t know what it’s like in her house 24/7, and neither of us know what he dealt with the first 18 months of his life before he was hers, so I am here for support but one day, I may just either bite the tip of my tongue off or lose it and ask what good thing he did today since I don’t want to have to call her husband to find out. (And in case you’re worried, she isn’t on the internet so she won’t find my bloggy story. In this day and age, it amazes me that I know three people who still really don’t participate online in any way. No email, no blogging, not even internet research or online bill paying! How does one do that?)

Next time BB’s having a bad day, I know I’ll likely have a lot of venting to do or I’ll share my displeasure in some way, but if I make an entry where I say nothing good about BB, let me know. My son is way more than autism. He’s a musical savant. He can do math far better than me. He knows HTML and designs video games. He’s drawn up a business plan and knows what he wants to be as an adult and how many kids he wants. He makes me laugh with his outrageous questions, and has far more wisdom than many of my peers, and even more than I have some days. When you talk with me, you probably won’t hear about autism unless you bring it up. He’s BB, and BB just happens to have autism. He also happens to be the cutest, most adorable, and most amazing kid I’ve ever met, and that’s what I focus on every single day. Even on the rough days, when I’m exhausted after he goes to sleep, I watch him and am thankful for what a gift he is.

If you’ve been a long-time reader, you know my posts run the gamut of vents about daily life with autism, frustrating school run-ins, interesting (or scary) autism news articles, and opinions about the world of autism. If it’s about autism, it’s in here somewhere. Like any parent of a child on the spectrum, I’m a 24/7 advocate. That said, I still ramp it up during Autism Awareness Month. My house is surrounded by blue lights — not to represent or advocate an organization, but to get the word out on autism. (Believe me, the blue stands out and gets questions.) I carry more autism cards to hand out, I talk about it more in general, and in specific, I suggest other businesses celebrate Autism Awareness Month. I work with anyone available to get the word out, because the more the word is out, the more understood my son will be. The more understood the neighbor’s son will be. The more understood my nephew will be. And the more understood those children we walk past in CostCo, the library and the child melting down at Disneyland will be. And the undiagnosed? Their parents may see the signs earlier. With enough awareness, maybe one day autism will be a thing only pre-existing children/adults have, and it won’t occur anymore. I can hope, right?

Please look around your community and see what events are occurring. For us, we’re taking place in this walk on Saturday. A bit of a drive, but it goes towards Dogs for Autism, and as my son has a service dog, we know that you can’t put a value on it, and every child with autism should have that special opportunity.

Put a ribbon on your blog. This BloggersUnite page is full of resources and has a ribbon and autism awareness badge available.

Write up a blog entry about the month, even if your blog isn’t about autism. Do you know a family with a child with autism? Offer to babysit so the parents can get out for a couple of hours. Have your child set up a play-date for the child — I tell you, that’s one of the best things someone could do for me. Our kids have social issues and are frequently left out of parties and other gatherings. A lot of places ask for financial donations, but there are other ways to make a difference.

I’m off to find some notes about BB to share for my upcoming school training. Wish me luck!

I just realized I didn’t share this with you, this gem, this dentastic visit to the dentist for a filling. It’s an epic story, from start to finish.

Start: I pick him up from school, he’s on a tear and starts to cry within seconds because the teacher reprimanded for something that she’d seen while outside of school on a weekend. (I am biting my tongue from sharing my feelings on that, it would take a whole new blog entry.) I promise him we’ll handle it, put on a calm face and secretly think that this may have seriously messed up our dental appointment.

We make the 25-minute drive in pouring rain, with BB talking to Dad on the phone about the injustices of his day. Dad agrees with me that we need to fix it, but top priority was relaxing him to get through the dentist appointment. Ha. I’ll get right on that.

He gets in the chair. Whew, we’re psyched up and ready to go. Oops, 9-year-old girl across the hallway had a meltdown and had to leave — now she’s back and they are going to finish her work. Dentist leaves our room, chair comes back up straight and out comes the DSi XL to keep him busy. Ten minutes later, dentist is back. BB is nervous. I’ll spare the details, but the dentist’s hand got novocained. It was bitten. The mechanical tray over BB’s lap went flying. BB had to be caught before he fell out of the chair onto the floor. Five of us were in the room. Door was shut. Door was opened. Dentist tried three times before he admitted defeat. I was sent on my merry way with a puffy-faced, red-eyed child apologizing profusely for not being able to stay still in the chair due to having a bad day at school. I did the same, while wondering if indeed we could return. Would their patience be any better next time? Did they really want him to return? Would the dentist wear leather gloves??

Finish: It.was.a.disaster. Dad seems to think he can get him to go back to the same dentist and try once again. Hmmph. I’m not going again. I think we need to try a special needs dentist about an hour away. We’re undecided right now, but we will be making a decision by Monday — the filling has to be done soon, but we have a few days to be sure we don’t put him through anything else unnecessarily.

Special needs dentists are a rare breed, and if you are one, kudos. I’ll try to warn you if my son bites, but I imagine it won’t be your first time. Or at least I hope. I’ve had enough of being the unique situation.


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