Autism Watch: 2007

Posts Tagged ‘skills

One of BB’s most common issues anymore is social skills. As a result, making friends is the most important thing to him…outside of coding new pages in his online building game. (The kid definitely has a career in game design, architecture or web development.) He has talked about it since starting his new school, and before the end of last year, he’d met one boy he really wanted to be friends with. Fast-forward to the new year, after a summer filled with family visits, beach trips and getting to know our new area, and he was still close with the boy. Daily phonecalls got longer and more frequent, and this last Friday, he was invited to spend the night. Hallelujah! Prayers are answered. And better than you expect they will be.

On Saturday evening, we picked up an extremely exhausted but oh-so-happy little man from his friend’s house. They’d spent the day at the beach, and his little pink cheeks were laying down in my car before I could even get in it myself after saying goodbye to the very nice family who took great care of him. Things all went well, and we invited the boy to visit our house this next weekend. By the time he went to bed last night, they’d talked on the phone three or four more times, and another boy had called and talked to him, too!

I still need to work with him a bit on not speaking his mind so much, and being forgiving when things don’t go as he’d prefer every single second, but he’s come such a long way.  Sometimes it feels like we spend more time having to focus on fixing things, it’s that much more wonderful when we get to watch him just be a little boy. And to quote his favorite phrase, “Period.”

Swine flu. It kicks your butt, and that of your entire family. No more than any other flu, and certainly not worth the vaccine, but nonetheless, it not only kicks your butt but it kicks it to the curb four houses down, into the gutter, through the sewer and out into the ocean 67 miles away. Four weeks later and I am still sporting a mild cough.

So there you have reason number one that I’ve not been blogging. My eyes were spinning at the end of the day, as I still worked during my bout (except for one day where even blinking and breathing was painful), and I was caring for Barnacle Boy, who scared us for a couple of days when the fever continued to hover around 103. Both the girls ended up with it, then the husband. Other son ended up with some cough and congestion last week, but that’s as far as it’s gotten. He’s oh so lucky.

I love Christmas. Why do I say that, you wonder? Because I love it more than Halloween..yet Halloween turns out to be this huge busy deal and before you know it, October’s gone and I’m wondering how to spend Veteran’s day with the kids who are out of school, yet I’m not because I have the Monday before off. Halloween this year consisted of two major parties, a few smaller events, and then the Trick or Treat Fest of the year at our house. We have this ginormous maze constructed in the front yard, from the curb I’d previously been kicked to through the yard, the driveway and out the side of the yard to the other street, complete with roaming monsters of the Freddie Krueger and zombie-type, scary movie music, and screaming … adults. A lot of the kids collected candy at the end of the driveway and backed away hoping Freddie didn’t see them.

Yet, I am <quietly> glad Halloween is over. I’m still tired. We went off-roading the weekend before Halloween and had, let’s just say, a little accident. Wear your seatbelts no matter how slow you are going, even if you are driving over a rut in a driveway. (No, that’s not what happened, I am just making a point. Heed my point, really.) Rollbars make nasty, ugly, sore and painful indentations on your eyeballs, eyelids, cheekbones, foreheads and noses. Trust me on this. Once you get the blood out of your clothes (and the off-road vehicle’s seats), you will not want it there again. I’m still sporting a crescent under the eye and eyeshadow is one of those things I have to really, really consider before I apply.

This past weekend was another huge Halloween party, this time adults only. (Unless you count the 20-somethings…my two oldest kids and their friends…who crashed it around 11:30pm just to see why Mom and Dad looked forward to the party all year.) Good thing my costume came with sunglasses to cover most of the bruise. I was Trinity, and husband was Neo. We were simply awesome.

So, how is Barnacle Boy doing after all this? Well, a few days before Halloween, he had to have an emergency baby root canal. (This was the, hmmm, 4th, I think?) He was not happy. Dh met me at the dentist and said he did great in the procedure. I drove him home, with him being the quietest (and creepiest) I’ve ever seen him while awake. He went to school the next day and recuperated impressively fast. Then the week got more and more chaotic during pumpkin hunting, then carving, cookie decorating and guests. Come Monday night, he was DONE. We got through the evening of clean-up and declared yesterday and today guest-free days. The cell phones were turned down and tv choices were BB’s. I even made a mad rush to Target to get Stratego, the game he had to have after playing it the last night of his two-year program he completed last week. (WAY TO GO, DUDE.) He came home from school, opened it, and declared it THE WRONG STRATEGO. (There really is one Stratego though. I know this because I researched it.) Pieces went flying, mad words were said (by him…not me…I stood there in amazement thinking “Don’t ruin The Wrong Stratego, I can return it!”) and an hour later, he was calmly eating an Oreo as we prepared to leave for his parent-teacher conference, where we proudly learned he’s academically more than a grade ahead but in need of more help for social skills, classroom participation and appropriate conversation. Always something, right?

That’s pretty much a uber-fast version of the last month and I know I’ve left things out, but I guess I need something else to blog about on a slow day in the future, yes? I know it will happen, and the fact I’ve admitted that is step 1 in my Blogger Improvement program. Admitting you have a problem is key. I admit it. My name is Dee and I am not the best blogger lately.

But that will change. With autism, there’s always something to whine about, complain about, or just sigh about. And with an awesome beautiful kid, there’s always things to brag about, be proud of, and happily share. I just need to find the time.

I haven’t blogged recently — busy (like everyone else), migraines, dd having seizures, sick kids, and in general, just not sure what to say. I don’t want a blog full of only rants about how bad my neighborhood is, how mean people are, and how tired I am of being afraid to answer my doorbell. Until I had something non-rant like, I decided silence was golden.

But — you knew there was a but coming — I wanted to come out of hiding to add my opinions to the topic-at-large right now. You know the one, the one where we as a community in general are pretending we actually have a right to know, or a right to know better, than what another family should have done or has gone through. You know, that kind of judgment that we absolutely hate to have pronounced on us.

I love the friends I’ve made in the autism community. I’ve learned more from these fellow trenchmates than anywhere else, yet I still feel, and have mentioned before, that sometimes we’re the least tolerant of each other, yet we expect, or demand, that tolerance from anyone outside of the autism community. This seems like an extreme of that, and it’s pretty sad, for lack of fancier adjectives. Sad.

Without repeating everything others have said, my thoughts are this: the Travoltas are humans. They are parents who love their children, except they have money and celebrity. Why does that money or celebrity make them responsible for sharing their personal trials or tribulations? So they didn’t tell the world their child had autism. If that was me, you’d not blink an eye. But throw in money and celebrity, and I should share? Where’s my privacy? Where are  my rights? My child’s rights?

Leave the Travoltas alone. Their child died. He is gone. They are suffering the biggest loss a parent can suffer. Leave them be. They didn’t owe us any facts. No celebrity does — if they do, it’s a bonus and we should be thankful instead of expecting it. In fact, now, I’d expect less celebrities to come forward. Who wants the scrutiny, the judgment, the “you should do xxx and not do xxx” that the Travoltas are seeing now? How dare people hassle them for their choice of medication, or no medication? People, we weren’t there. We aren’t there. They owe us NOTHING. Back the flock off.

There, I said it. And on the other side, I do wonder why autism is seen as something, by Scientology, that cannot be recognized, but I’m not a Scientologist (thank God) nor will I ever be, so I can’t speak further to that. If they find it shameful or fictitious or unmentionable because it may require psychotropic drugs…well, I’ll just leave my thoughts to your imagination in that regard, though I will say, doesn’t God love us all?

On that note, I hope something else happens soon to distract from this situation. There are so many more urgent things to discuss, like my son’s new social skills program, YAY! I say we all talk about that, until something more exciting comes along. Sound good?

I guess there’s no other way to put it politely. I’ve been avoiding the blog. I deal with autism all day every day, in some aspect or another, and lately, when I have a spare minute, the last thing I feel like doing is blogging about it. More autism? No thanks, I’ll pass.

But, I think I’m over it. Or at least for now?

The last few weeks…I don’t want to re-live them, but they’ve taken away a lot of faith that people really do love thy neighbor. Maybe I was naive that they ever really did, but I guess I’d been lucky. I’d had good neighbors and aside from the occasional nosey stranger, going out in public was getting easier. But now? I don’t let my son out in the front yard without constant supervision. Out in public, like at the county fair just last Monday, we had to stay on him like glue, after a couple of random unknowns spoke out of turn. (Who knew an empty marshmallow shooter was dangerous to sleeping iguanas?)

But, onwards and upwards. We’ve packed our garage and our china is boxed. House plans are chosen, and tentative house sale dates chosen. It’s not only a reality now, but it’s an agenda that is going to be daily for quite some time now. On a good note, BB is ready for it. He’s ready for a fresh start, new neighbors that won’t talk crap about him because they have nothing better to do. He won’t be blamed for their inability to control their own children. We’ve learned a lot from this experience, and we’re thankful that we can walk away from the garbage. The small-minded ignorant people can’t leave that behind, no matter where they go. We’ll soon have different family to celebrate holidays with, and while we’re going to miss our close friends, BB is going to have 5+ acres to run around on. Animals to chase. Bugs to corral. Gardening to help me with. Healthier food, because we’re going to fish from our pond and eat our homegrown veggies and fruit. Mom and Dad will have less errands, so the stress will decrease and the overall pace will be more enjoyable.

In the meantime, school is doing well. He visits the nurse’s office often — ‘burning fingers,’ ‘sore legs,’ or ‘too hot.’ But the staff sees him for what he is: a sweet little guy who likes to talk and is entertaining but just needs to vent and get things out of his system. Like us, they’ve learned it’s better to give him ten minutes of time or he’ll whine and be unhappy for 30. Ten minutes of attention, even five in a pinch, make all the difference. He starts a new social skills program in a couple of weeks, at school (once a week) and we’re also working on using Rick Lavoie’s recommended approach towards dealing with his behavioral and discipline issues. It was recommended at his weekly therapy and we really like it. The DVD is called “When the Chips are Down.” It’s old (think late-80s-ish?) but the process is timeless.

So, there you have it. More personal viewpoints on daily life with autism and less of the general perspective. We’ll see what tomorrow brings!

How do you teach your kid that yes, other kids are mean? How do you even begin to acknowledge to yourself that yes, other kids are meaner than you can imagine?

I know, in the scheme of things, focusing on this is weird. But, when it’s a daily issue in your house, a daily facet of your child’s autism, it’s got to be a focus. I can’t ignore it. I can’t teach my child how to work on social issues when the only opportunities he has are negative ones. I can’t tell him that yes, the world is basically good, just seek it out, when sometimes your own faith in people is shot.

Don’t assume this is our only problem — it’s just the one that I’m fired up about so much because lately, it’s worse than it used to be, through no fault of our own, and because it’s something that we can’t control. We can arrange BB’s schedule for optimal success, we can provide proper food for the best nutrition and chance that BB will eat it. We can work with his school to be sure his seat, his homework amount, and the environment, all work together for his own good. We can turn on our air and keep the house cool enough, cut his pancakes before putting on the syrup, and make sure his blanket is washed so it’s soft. But I can’t stop the neighbor kid from telling the only other kid in the neighborhood who Nasty Witch hasn’t gotten to, that they should hide from BB. That they should push him down and tease him. That it upsets him if they call him Stupid. I can’t stop my son from being upset when his friend pushes him down because the other kids says to, or from being hurt at bein called stupid. It’s the uncontrollable factors, the things that are caused by others peoples’ ignorance or refusal to even care, that can negate all the other good you’ve experienced. We adults can blow it off…mostly…but kids? Not so much.

So today,  BB’s friend from school a couple of years ago is over here to play with him. We invited him over and we are so glad he was available and wanted to come. I’ve mentioned him before, how cool both he and his family are. They’re outside now, on the slip and slide. Oh wait, they’ve unplugged it (and put it away? who are these kids??) and now have the backyard hose going down the slide on the playset. Can you say mess? And cost? But I won’t stop them for a million dollars. They are smiling, having a blast, and being creative. Who can fault that??

These last couple of months have been a busy time. It’s summer, and whoever said ‘lazy days of summer’ didn’t have young children. There’s always something going on, even when there isn’t. We’ve had some negatives — having to increase his meds a bit instead of decreasing them, social events that don’t work out, plans that go awry — but it’s been overwhelmingly positive. See, as the parent of an autistic child, I’ve learned to appreciate things in a different light. When my oldest (now almost 21) was this age (8.5), she was diving off the diving board. I was so impressed, so proud, even if it occurred mainly at our pool at home. Look at my daughter! So exciting! She can dive!

But with a child with autism? The ‘normal’ achievements don’t necessarily occur at the normal aka socially acceptable time, and our goals are a bit different. Some moms want their children to win spelling bees. Mine would fidget and dance and tic all through a contest on stage, but he can outspell and out-vocabulary (my made-up word, deal) most kids years older than him. Thing is, he will tell the kids that and then not understand why neither they nor their parents like that, and tell me “but mom, I was just saying the truth.” Years ago, we put Barnacle Boy in swim classes, with disastrous results. Mommy and Me classes became Mommy and Daddy and Big Sister and Me, and the other moms weren’t quite sure how to react to the three-year-old, the oldest in the class, who cried every time he got wet and refused to go underwater without a huge tantrum. (And, if I were to be completely honest, neither did Mom or Dad or big sister. BB hadn’t yet been diagnosed, and we were just starting to get an inkling that things were more off than what could be attributed to him being a premie after a tenuous pregnancy.) Each summer, even after the diagnosis, we tried swim classes. Moms and Dads (and grandparents and aunts and uncle, none of which my child has ever had come to anything like that) are cheering their kids on for laying on the kickboard or jumping in the pool while staring at mine for licking everything and everyone and refusing to put his head in the water. Some days, he wouldn’t even get in the water. When he did? We cheered like he’d just won a Nascar race, with people staring like we were fools. And we could care less about their stares.

Yep, autism makes you appreciate their accomplishments so much more than other kids. And I can say that as the mom of three other children, too. I cheered them on, was proud and celebrated but this is different. When my son overcomes something that’s more than just a normal challenge, my heart almost hurts because I get so excited. It’s hard to understand or explain unless you’ve been there.

This summer was a summer of changes. First, we took a trip to South/North Carolina, then decided to buy property there. Property bought, now we’re planning a permanent move. Pretty big change, moving from SoCal to the Carolinas, but BB is so excited and wants to go now. (So do I, but that’s a whole different story.) He told me, “Mom, I want to move right away. Everyone here is mean to me, except for xxx, and I have only one friend. I am tired of it. I want a new place to start again.” Who can argue with that? True words of wisdom.

We also made the final decision to change churches. We use to love our church family, but as time went on, the feeling of “shouldn’t ‘family’ be more than this?” continued to grow. BB was never invited to any social events, at least one parent was telling others about how difficult ds is, we were left out of things because of ds, and he wasn’t getting the social interaction that was a big draw in the first place. It got to the point where BB was constantly asking us to stay home, and the one friend that did play with him invited him over less and less. (Social interaction, imo, needs to be reciprocated.) Other parents pointed at him, talked, or whispered, about him, and a few took it upon themselves to discipline him, even if we were right there in the room. Autism is vastly misunderstood, so each year, we gave a lesson during teacher training, and we made a notebook, plans which the pastor approved of. Yet some of the volunteers couldn’t tolerate him, and others disregarded what we wrote entirely. Acceptance and the love that’s supposed to be shown to fellow humans, by Christians, waned. I guess it’s okay, he’s just a kid…not.

And there were good changes, the achievements we are so happy about. One was that ds can almost swim! He can do small spurts across the pool, and last night, at a friend’s pool, I taught him how to blow air through his nose so he didn’t have to plug his nose and swim with one arm. Woohooo!!

Another huge deal was a surprise to us. A week ago yesterday, he learned to RIDE HIS BIKE…without training wheels!

Next up on the agenda? Tying shoes so the new tie vans we bought him a couple of weeks ago can officially be his new school shoes. And he can do it, I have no doubt. Never underestimate a child just because they can’t communicate like society says he should, or because he has meltdowns that make the Grand Canyon look like a a divot on a golf course.

He starts school on Monday. New teacher, new room. Same aide at least. More changes, and there’s a lot of unknowns. He worries about having friends, and so do I. He worries about people picking on him. So do I. I also worry about how long before the first time the school calls because he doesn’t feel right, or if another parent will not be able to stand him and therefore tell the teacher. But, it’s temporary. We’ll be, hopefully, moving within a few months, likely after the holidays. The loss of our best neighbors, the nastiness of another neighbor and the overcrowded, overtaxed and underbudgeted state is on our nerves. (That and the fact you can’t even merge onto the freeway from the onramp without having to shove some uncooperative person out of the way or drive on the shoulder, but I digress.) We have no church family, which isn’t a huge change as we didn’t have much support there anyway, and we aren’t jumping in to join a new church with a pending move. The move will bring BB closer to his cousins, one his same age/sex, and he’ll get to roam our five-plus acres with dogs, wildlife and trees to climb. I really think a slower pace is going to make a world of difference.

As I write, BB’s at his friend’s house. Bless his mom and dad, truly. Ds does well there, but I think a lot of it has to do with them not being stressed-out people who can’t deal with him. They don’t sweat the little things and he doesn’t feel under pressure. And their sons? Wonderful kids, not to mention adorable. They are one of the few friends we will miss. BB is spending the night!! His first overnight, and I’m probably almost as excited as he is. (And my house is actually quiet enough for me to find time to blog, something that doesn’t happen as much as I’d like it to.)

Dh is cross-country right now, working two weeks in a city so small, he’s got one restaurant within 15 miles of his hotel. To his utter delight (I don’t use that word often, but it really fits in this instance), he drove a bit further and found a Cracker Barrel, a favorite restaurant that’s not available here in CA. Not so great for someone who eats really healthily daily and just dropped 25 pounds, but he’ll at least be able to use the hotel gym and vary his choices. He misses BB so much but thanks to Bluetooth technology, my latest favoritest thing, I can take a lot of photos on my cell and bleep them to my laptop and email them to him. We also use texting way more than Dh ever thought he would. Instead of the “what in the world do people have to text about all day long?” I used to hear, now I hear little commentary all day long that cuts through the physical distance.

Think happy thoughts that BB makes it through the sleepover without any issues. He has a tendency to sleepwalk or have night terrors at times, like his brain won’t shut down entirely while he’s asleep. But, they don’t happen every single night, and he was up and around last night, so I think tonight will be fine.

I’m off to enjoy the quiet evening. I can stay up late and work on my list of “Things I’d Do When I Get Free Time” and look forward to seeing BB in the morning.

My little guy’s last couple of weeks have been rough. Not sure why — it started before the aborted camp attempt, and it was after school was out, by a couple of weeks, so we can’t figure out what’s up. He’s just more edgy, more easily irritated, and he yells a lot more. A lot. So, I shouldn’t be surprised that today was no different.

Before I go further, let me just say I’m getting over a nasty case of the stomach flu that I thought was going to kill me. The kind where someone’s stabbing your stomach back up through your throat and out your mouth with about 30 sharp spears. The kind that leaves you dry but still nauseated, exhausted but unable to sleep, with joint aches and pains that should only come with a three-story fall. (Not that I know what that feels like, but I can guess now that I’ve had this flu.) It started after ingesting a yummy dinner of chicken tortilla soup that seven of us — I feel the need to specify that only three of us got sick, and not all right away, so no, it wasn’t food poisoning. (I made the soup, so you can see why I’d want to specify that.) A few hours later, I was down for the count. I’m still not feeling myself, and I’m sure it’s affecting my mood.

That said, I let ds play outside today while I sprawled on the couch. I can hear him playing with the kids, but wasn’t prepared for when he ran in screaming, sobbing, red-faced. “She yelled at me!” Initially, I wanted to go have it out with “she,” but reason kicked in..that and my husband reminding me that the little guy has his own perception of reality and we needed to get the story from someone else first. In the end, we learned that the situation was handled with less harshness than he saw, and was nowhere near as bad as he understood it to be. But, that’s the problem, in a nutshell.

For one thing, I can’t expect other people to know my son has different ways of seeing things, that he takes things literally, that for him, it’s ALL A BIG DEAL. Others don’t necessarily know how to handle him, or that he even needs any special handling at all. And I can’t go around telling everyone — it’s not like I can put him in a t-shirt that says “I Have Autism,” but yet we put him out there and expect him to learn how to deal…when in reality, few people let him be around their kids long enough to learn, whether or not we tell them. In this particular case from today, he’s still able to play with the kids, but then we have the second issue: how to get him to understand? He’s abrupt and says what he’s thinking and feeling, he can’t always communicate his feelings appropriately or gently enough, and he doesn’t understand give and take. It’s all just so difficult and leaves me feeling, again, like I can’t do enough.

So what do you do? How do you let them out in a world they’re not prepared for, or that’s not prepared for them?


Enter your email address to follow this blog and receive notifications of new posts by email.

Join 36 other followers

Twitter Updates