Autism Watch: 2007

Posts Tagged ‘social

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.”

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So I’ve been gone a while. Took a break. No real reason other than living and breathing autism 24/7 was too much. I would turn on Facebook and see an overwhelming number of status updates about autism: articles, stories, news, etc. It was all I saw on some pages. That’s nothing bad about those people — but it’s just more than I could do. We’re in the midst of this move and BB is having issues at school. Keeping on top of all that was enough…or more than enough. Neighbor issues with little guy, meanies out and about, and I just wanted to move on.

The holidays were good. We had a lot of gatherings, and I also was fortunate enough to be able to fly out to the Carolinas to help my sister-in-law after her surgery. I was gone nine days — I was having a “can you really do this without me??” moment…or several…but it’s husband’s sister, and he really wanted me to go, in a non-pushy kind of way. “You’ll like this. You can bond. You need the break. You can help while having fun.” And in one of those “man, I hate to acknowledge it, but…” moments, he was right. I did like it. We did bond. I did need the break. I think I helped, and I know I had fun. It reaffirmed my feelings about moving out there, and it allowed me the opportunity to just live out there — driving my niece to school, shopping, getting gas, and working. (I worked all but one day of that time. Saving my days off for the move.) I got to know my niece and nephew much better (I miss them!), I checked out the local places to shop and found that the Wal-Marts of the south are nothing like the hellholes crowded whiny employee dirty buildings I’ve experienced out here. I learned how to put gas in a car, even if it was an old-timey nozzle that we actually had to TOUCH, and I enjoyed working while looking out at trees that were changing color, with nature making its beautiful sounds. Gorgeous. Just driving to school in the mornings, I loved seeing the Christmas decorations all over. They do it right there! None of this political-correctedness of SoCal, where saying “Merry Christmas” can earn you a nasty look. In fact, I came back and challenged anyone to hassle me when I said it, loudly and often. Not a single challenge! I felt better, ahhh.

Anyway, I returned a few days before Christmas and jumped full-bore into celebration mode. I’d finished shopping and was able to just spend the time with the family and friends. Cookie-baking, Christmas light tours, fun dinners, open-houses, all that stuff and more. Little guy did wonderful at the holidays and only had a few meltdowns. He’s working harder to be aware and we’re working harder to not flip-flop on how we handle him. We did a lot of fun things while on vacation — like cleaning out BB’s desk, decluttering the rest of the kitchen cabinets, putting away Christmas gifts — and also threw in a New Year’s Eve bash. And by bash, I mean bash. So many items were bashed in the trash can at the end of the night..everyone left happy and safe, and quite a few slept here. We get to leave California on a high note!

And on that note, the For Sale sign is in the front yard. The realtor is assured the house will sell quick. Phew. We also experienced an amazing blessing that words can’t quite convey. Several months ago, a dog trainer for service dogs visited our therapy group. We listened to his talk with much interest, but that interest turned into disappointment the next morning when we learned just how expensive they are. We don’t begrudge the cost — the dogs are beautiful and take a lot of time/equipment to train — but it was money we didn’t have. Then stepped in a woman with a huge heart and a  beautiful soul. She donated a dog to BB, a trained dog. Therapy and service-trained, he is so darn cute. BB is thrilled, but learning how to handle him while handling himself. It goes hand-in-hand, as the dog is a calming device. He’s cuddly, loving and a re-direct when BB’s upset. And, just for fun, we threw in a Yorkie; we’ve never had house dogs, and now we have two. We don’t mess around!

I don’t normally whine about my health, or at least I try not to, but I got the MRI results for my back: two herniated discs, and two bulging discs. Then, just for fun, I had to get an ultrasound on Christmas eve because they found a lesion on my kidney. Great. It’s really cut into my running time, which has kept me feeling healthy, but I managed to get back on the horse today and run a 5k in under 31 minutes. We’ll see how I feel tomorrow.

School’s back in session tomorrow, and BB is nervous and anxious. He is concerned that his one friend there won’t be allowed to play with him anymore; we tried to invite him over the holidays, twice, but each time he was busy “all week long.” Then he’d show up playing at another boy’s house in the neighborhood. Two moms get together, one blabs and a little boy with a disability pays the price for others’ ignorance. At least we’re moving soon!

It’s time for Family Movie Night now. Another Scooby-Doo movie is on tap. I’m ready to fall asleep after a late-night yesterday — BB’s friend celebrated his birthday, and BB was his guest for the night. Wahoooooo! He did wonderful, not a single problem, and we went out to lunch, shopping, dinner, and saw Avatar. Amazing movie, though I did doze for about five minutes early on until the pace picked up. Then I was glued. Go see it. Just plan your potty breaks well and settle in for the long-haul with shoes that haven’t caused blisters. Taking off boots during the movie, with people walkin back and forth to the snack bar and bathroom, is not something you want to have to do. Trust me.

Happy new year!

This last week, we finally decided what to do for BB’s birthday. He had grand plans, but with an impending cross-country move, we’re watching our budget. We also aren’t sure he’ll have enough kids come to make a pizza-parlor/game type of party, so we decided to go back to our standby, a cool bouncer in the front yard with food of his choice and a sundae bar for dessert, along with cake. The theme is Army, and I’ve got all kinds of decoration/game ideas, though with his temperament, I may have to back out of the Nerf gun/marshmallow shooter ideas for fear of someone flipping out with a bullet or marshmallow in the eye.

But, to the point…I sent invitations to the entire class on Wednesday. All 20+ kids, and asked for RSVP. (I know that RSVPs aren’t foolproof, but it’ll at least give us an idea if kids are coming and how much food to buy.)

Chirp. Chirp. That’s the crickets as we wait for the phone to ring.

I know there’s a major holiday in a few days, but if I’d waited to send out invitations after Thanksgiving break, we probably wouldn’t have given them enough time.

I know people are busy, but I still can’t help but worry….what do I do if he has few to no kids? (Okay, wait, I know he’s got one coming at least.)

This is an issue a child shouldn’t have, worrying if he’s going to have birthday party guests to celebrate with.

I have to stop worrying and just keep planning. Camouflage decorations, little Army men all over the yard, and face painting to match the theme. No goodie bags of cheesy toys and candy no one wants, but some homemade cookies in some Army-ish shape I have yet to decide upon. Maybe some game prizes, not sure yet.

How does everyone else handle birthday issues?

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??


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