Autism Watch: 2007

Posts Tagged ‘play

Sharing a link for him, thanks for reading!

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To me, it’s always such a remarkable coincidence that when my son shows up on the front yard of any of the kids in the neighborhood, they suddenly have to go inside for dinner…go clean their room…go dig up the bodies in the backyard. Okay, so that last one was an embellishment but you get my drift.

Note to parents who don’t want their little preciouses to learn compassion and how to play with someone different: come up with some new reasons. Open your child’s mind as well as your own. Bigotry comes in all shapes and sizes, and you’re perpetuating it.

Now that I’ve gotten that off my chest — within five minutes of yet another miraculous Emptying of the Neighborhood — I feel better, and I can go on with my excitement over another great day of being with BB. I worked a half-day — Fridays are frequently half-days during the summer where I work, yayyyy! – and then we hit up the local Brunswick alley, where I must have seemed like the biggest ignoramoose ever seen. How much is a game? Oh, per person? Shoes cost too? How do I reset the pins? Bumper guards, yeah, can we have them, too? Do we each throw the ball twice per turn, or do we go back and forth? Yes, I am a Bowling Virgin. But, thanks to wonderful lane-neighbors (who are nicer than some of my real neighbors, ha) we muddled through set-up and played three games. We also experienced bowling alley pizza and then finished up with a rowsing game of air hockey.

BB at the Bowling Alley

BB at the Bowling Alley

It was a blast! $27 poorer, we left to make a quick trip to Trader Joe’s (had to get some wine for our Mexican food-themed Nascar race party on Sunday) and then to the post office to mail a friend something. He did great on both errands! Well, great may be an exaggeration, but he didn’t get mad, and that works. He’d never been to the post office before, and he really doesn’t care if he never goes again. (One guy in front of us hadn’t been around for delivery and took quite a while to complain about it..over and over despite a long line of waiting people.) But, still, he did it, I got all my errands completed, and we came home where he could decompress while I caught up on stuff, checked in at work, and made crabcakes (homemade) for dinner. In another 1.5 hours, we’re off (or maybe just me — I’ve been bribed with a Roadhouse Tea) to pick up dh from the airport. He gets to help me further plan Sunday’s party, though he can’t attend. But, it was his idea, so he’s not off the hook that easy.

Enjoy your weekend, and if you’re hiding your child in your house until mine goes away, shame on you. He’s autistic, not stupid.

Do you? Or don’t you?

And in case I’m not clear, I mean forcing your child to engage in certain social events or activities.

My son was in our church’s Christmas program last night. To say he participated under duress is an understatement. We forced him. He didn’t want to stand and sing, or even pretend to, and he didn’t want to say any lines. Problem was, I did.

I know, you’re thinking “why.” Ten minutes after we arrived last night, I was wondering why, too.

My thoughts were/are that we have to not give up on him in any way, and that we always need to try and provide the same activities neurotypical kids have. If we never make him do things he’s uncomfortable with, will he ever be able to do those things? Of course, there are limitations to where you’d test this theory, but we felt safe with this one. At this point, if I had to decide on next year’s play already, I’d probably say no.

Ds doesn’t take direction well. He wants things his way. He wants routine, sameness, and control. Being in a group activity means he’s going to have to take direction, and he did. Well, he had adults giving needed direction, but I’m not sure he really ‘took’ it. He flashed daggers, shoved away from the group, shoved through the group, argued with a couple kids, and may have told one adult he wanted to kill him. (Thank God, that guy had both a sense of humor and a lot of compassion…and he knew about ds.) He didn’t even make it through the final dress rehearsal/practice. Two minutes before showtime, dh and I were summoned. Ds had another issue with another kid, and it led to a total meltdown. It took dh 20 minutes or so in a quiet room before he was ready to go on-stage, and none too soon — his lines were due in about two minutes. I got him on stage, minus his cap, and he happily said his lines. Total transformation.

Not so fast.

As soon as his lines were done, he started shadowing the child standing in front of him. Every time the boy would move, so would ds. Soon, another adult close by quietly reminded him to stop, which was fine — ds needed to hear that he can’t ruin someone else’s performance and that he’s part of a group — but ds shut down. He moped, dragged, and moved away. It was heartbreaking. I was already nauseaous, it’s painful to watch, and this just made it worse. Then, miraculously, the play was over. Good to go, right?

Ha.

The kids all went to a back room to take off their costumes. Candy was handed out, but when ds didn’t get a ‘big’ candy like the ‘big’ kids (“But I AM big!”) he threw what he was given. That resulted in hysterical crying, and dh carrying him out. We understood his upset and wanted him away from everyone before it got worse, for others and for him. We know he doesn’t want to be seen this way, he hates the stares and whispers, and I hate it as well. So many people came up to us to tell us how good he did, how he at least said his lines, etc. True, true…but nonetheless, it took me a bit to decide if I could eat dinner or not.

I looked through the photos later, and saw his sullen, angry glances. Sure, he may have learned something from this, but how many lessons does it take? How many times do we have to try this? And how often before people start thinking ‘enough, already!’ At what point do the lessons my son learns and the importance/fairness of him participating becomes unfair to others? Or do we continue to ignore that aspect as long as he’s not hurting anyone else? Luckily, the only visible issues last night were not during the show, except for those last few minutes.

I’m really relieved it’s over with. I love children’s performances. I love helping — the laughing, the funny mistakes, the whole organization of it all. But, the stress of trying to get him to go along with the plans? Not priceless.

At least today is the first day of the official Christmas vacation for him, two and a half weeks of him around here, and I’m THRILLED. And no, that’s not sarcasm. He thrives on one-on-one attention, and I had kids so I could be around them. What better time of year than Christmas. Speaking of which, time to go. I need to dig out my gingerbread cookie dough recipe and get that mixed and refrigerated. Tomorrow’s cooking decorating day.

Yep, another one of those entries, the kind where I share an incident where my son overcame a difficulty but my heart still breaks for him. No tissues necessary.

Waiting at the gate, he’s late coming out. I see the little girl he has issues with walk around the corner sniffing. Finally, I find him sitting on a bench talking to his teacher. That in itself is an ‘oh no, what happened now?’ moment, but do you ever have times where you look at your child and you are so overwhelmed by love and a bit of fear for him, and this overwhelming need to grab this beautiful little miracle and run away to an island? This is one of those moments.

He’s sitting next to his teacher, who is patiently explaining how to better handle something. He’s looking in her direction..at her shoulder or somewhere in a distance, as he’s nodding in response. His eye-contact is nil. He’s wearing a polar fleece ear-warmer on his hand, upside down. (Someone gave it to me.) He’s flapping his fingers, and he’s wearing his ‘weighted’ shoes (aka heavier shoes that don’t quite qualify as casual shoes or dress shoes or boots and are definitely not sneakers), tapping a foot up and down. He looked SO. DARN. CUTE. It was like someone was pulling out my lungs, I wanted to just hug him and never let go. This stupid autism, how dare it mess with the ability for my child to just be a child?

After a little more talking, where I learn he’s not in trouble nor did he cause any, I also learn that the teacher’s working on a way to resolve these issues between two kids that entirely rub each other the wrong way. I try to get ds’s attention, but at most I get a glance to where I’m standing, no higher than waist-high. No pretty eyes for me either, and I live for those pretty eyes. I can see my little boy shrinking inside himself, and my heart just contracts. Does this ever get easier?

Social skills are so undervalued in society. People think that being a loner is okay if the child wants, but what if the child doesn’t want it? What if the child wants to make friends but just doesn’t know how? What if he can’t pick up on the nuances and subtle body language, facial expressions or even sighs?

This morning, I took him to school in the midst of gale-force winds. (Did I mention that winds usually make him anxious?) He sees a little girl he likes (“Just friend-like, Mom, not girlfriend-like, but she wants to marry me still.”) and asks if she wants to play with him. He doesn’t really look at her, just talks in her direction and has this little smile on his face, almost as if he’s trying not to smile and is afraid she’ll say no. She says “Hmmm, what about recess and lunch but not now?” He comments back that he just wants to play with her whenever “if you want to, though.” She agrees, and out comes the rest of the smile, though he was really trying to hide it. Again, my heart just ripped some more. This precious little boy so wants friends, so wants to play and so wants to not have the anger issues that he does. And I so want that for him. I only wish I knew how to achieve it. The island won’t help, I know, but at least he can’t get his feelings hurt there.

And it was going so well…

Once upon a time, it was a quiet afternoon. Dh was at Costco, and my daughters were reading, napping, just hanging out in their room. Older ds was at his friend’s house.

Then…

BAM.

High-pitched screaming. Banging. Yelling. More banging.

Peace. Tranquility. Quiet. Gone.

Ds quickly made his way downstairs and it escalated. He went into a rage like I’ve not seen him do in weeks. Don’t get me wrong, he gets mad still and has his meltdowns and tantrums, but this was worse than any in a while. It took a while to get him into the crying stage, beyond the screaming stage, through the throwing everything he could grab stage, beyond self-injurious stage, and completely past the hurting mommy stage. At one point, he lunged me from beyond and jumpd on my back and head like a crazy monkey from a bad, b-grade movie. It took older dd to get him off my back, with me prying his hands out of my hair. My glasses made it out unscathed, because I’m good at ducking but mainly because I tossed them off in the 4-seconds dd held him after she got him off my back. And no marks!

He’s out front playing football with dh, after a while of self-constructed O.T. spinning on the swing out back. He’s not going to be on the computer again until Wednesday — that’s a computer exile because the reason for his meltdown was that the computer had some issue in the midst of him playing it.

Life is good.

Long story short, apparently ds was playing with a little girl who took the game further, without his knowledge, and told a group of boys, her friends, boys my son did not know, and told them to ‘chase the bad guy,’ with my son being the ‘bad guy,’ and to ‘put him in jail,’ jail being the bathroom. Ds still doesn’t understand it, doesn’t know how it went from playing to that, or any relation between the two, and the little girl got mad at him because she was called to the principal’s office to explain.

So, while I’m very thankful it wasn’t a true bullying experience, I do have to get my son to understand that sometimes more goes on than meets the eye.

In speaking with admin, I was again impressed. They took it seriously, acted immediately, and handled it immediately. The kids were all told that touching is wrong, no matter what kind, pushing/shoving into a bathroom, or pushing/shoving, period, is wrong, and that the minute someone says ‘no,’ and infers they don’t want to play, they need to be let go. (In this case, they should have let him go when he yelled ‘no’ because he never realized it was a ‘game.’) Ds was encouraged to continue to seek help if necessary, and they stressed that he was not in trouble, he did the right thing by seeking help and telling admin. I don’t want him seen as the boy who cried wolf, and she assured me this wasn’t the case, because she did need to know that the boys, particularly so many, were not following playground guidelines and respect towards classmates.

So…PHEW. Not nearly as bad as it initially sounded. It’s amazing what one piece of the puzzle can do — everything he told me was true, everything, except the missing piece of the puzzle that explained the why, which was that they listened to the girl and chased him as part of the game.

I’m glad it’s a weekend. 😉

And to everyone who wrote me or posted — THANK YOU. It’s so wonderful knowing there’s such a caring group out there, people who understand. My best to you for a good weekend.

On the heels of my rant about how rude people can be, my son came home after experiencing it from a different perspective…again.

It’s no surprise that my son has a hard time with friends. Social skills are a huge part of any autism spectrum disorder. It’s a misnomer that all autistic kids don’t want friends — many do, they just don’t know how to go about it, and my son is one of them. He wants friends, desperately, though he does want them on his terms, something we’re trying to work on. (Honey, sometimes you have to play what your friends want. You can’t always talk about Pokemon. You aren’t always in charge. And so on.) He’s learning slowly how to fit in and join an activity, but it’s a vicious circle. I teach him on the assumption that other kids are going to be nice, when one yesterday told him he wasn’t as cool as another kid, so they left with the ‘cool’ kid, and another one held up his fist in a threat if ds played with them. Maybe this behavior’s allowed at their house, or maybe the parents don’t know, but it’s so hard to teach a kid social skills when their role models aren’t so hot.

So while he’s laying around wrapped in his blankie, home sick today with a lot of congestion, I’m wondering how to help him and what tomorrow will be like. He’s got what he calls “The Master Plan.” He’s going to be ‘cool,’ and kids will like him and leave the kids from yesterday to play with him. For his sake, I really hope it works. (I was just glad we moved on from the point where he wanted to hold his fist up in return, but he does realize that it’s an aggressive response that could get him in trouble so I think we’ll be okay. He’s SO afraid of having to pull a card, especially if he has to go to the bathroom outside of recess/lunch, so I had to let him know that his IEP, or “the meeting Mommy and Daddy have with the principal” says that he can go potty if he needs to, though he’s still supposed to try to use other accepted times as much as is possible. I think that’s preferred for everyone over him having an accident and needing to be walked to the nurse and miss class time for a clothing change, along with the teasing that he’d be at risk for.)

When school first started, social issues were at the top of my List of Worries. (Is it just me, or do we not all have one when our kids are in school?) I worried that he’d not find friends to play with him, and that, like last year, there’d be numerous birthday parties but few invitations. (I’ll save you my rant on how often he’s left out…for now, at least. I’ll probably rant on it at a later date.) I just hoped we’d not have the copious amounts of tears. It breaks my heart, and like we sat last night with him on my lap, I want to protect him every single day. The fact that this is something that’s not tangible and is harder to ‘fix,’ I’m concerned. I think he’s anxious about it all, and I know stress makes his behaviors worse. And the tantrums, anger and yelling have been much worse these last two weeks.

Until the IEP, I’m going to be working on my goals and needs for school, things I want written in the IEP, and possibly have a pre-IEP meeting just for a “this is my son and this is what he does” introduction. (Personally, I think those should be mandatory when a special needs child is placed in inclusion, but who am I.) I hate to be “that mom,” you know, the mom that the teacher sees, wonders if she’s been noticed, and if she hasn’t, wants to turn and hide. But, I can’t send my son off every day wondering if he’s going to be a mess that evening from school-induced stress or social issues that have him convinced he’s entirely unhappy.

In the end, it keeps rolling through my mind that it shouldn’t be this hard to be a kid. What comes more natural than just wanting to play and having friends. Autism is just wrong, and it’s a rare thing that I get mad at it, but right now, I am. Autism steals away some of the normal childhood fun. Sometimes I have to remind myself that just because I think he should do something doesn’t mean he should; if he’s happy not doing it, great. But when he wants to do something, and can’t because nasty autistm-related issues get in the way, it’s just wrong. It really shouldn’t be hard to be a kid.


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