Autism Watch: 2007

Archive for May 2009

I like to think I stay on top of the autism community news pretty well. Sometimes I skim through articles, and sometimes, well, I have an autistic child, I don’t necessarily have the time to read something due to caring for him and the chaos that can surround us. But, overall, I really try to keep abreast of the research, the advances, and the injustices. There’s always some new research, quite often fluff stuff that doesn’t really help us, there’s an advance or exciting treatment opportunity now and then, but the category I see growing the most is in the injustices. Most days I read them, shake my head, and wonder what’s wrong in the world, but today, it hit me — maybe we’re our own worst enemy.

I’m a person who believes in fairness. If someone slams the door in my face, I might just say “Thanks!” loud enough for them to hear me. If I hold the door open for someone and they walk through, ignoring me, I might say “You’re welcome.” And if someone yells at my child, I usually will say something akin to “Mind your own business, tend to your own children, this one’s mine.” If service is bad enough to leave or not return, I’ll tell management. And so on. But, I do temper my actions with the thought of “is it really worth it?” first. Manners, yes, always worth it. We use to be a society that cared more about each other, if nothing else, we were more polite. But now, it’s all about me. And me. No, me!  Customer service, if I never plan on going back anyway because it’s too far or not my kind of food, nah, why bother. If I have  my children with me and it’s only going to waste time complaining about wasted time, I’ll pass. So I don’t go off whole-hog in a mood to correct the injustices. I very definitely pick and choose my battles.

So why don’t we as a community do that? I’m not saying my way is best, but honestly, if we want to appear credible, why aren’t we saving our time and energy for the big guns?  There are plenty of them to choose from. If I boycotted every place that I received glares from staff for my noisy son, laying on the floor screaming, I’d have nowhere left to go. Sad but true. It’s human nature. People will stare. Now, if they continue to stare, or say something, that’s a different story, but sometimes I think we expect too much of people. We expect everyone from teen baggers in the grocery store to first-time moms of newborns to the substitute mailman and our childless neighbors to understand our children, know they are special needs from the get-go, and go out of their way to help us. We expect them to somehow magically absorb understanding that removes any annoyance, and if they don’t, we call them ignorant, even if they’ve never had the opportunity or reason to learn. We don’t just expect compassion, which everybody ought to have, but let’s face it — we don’t know what’s going on in others’ lives. We want them to be nice and helpful to us, but are we giving any time at all to the fact that their lives may be in a shambles right now too? Maybe the teen bagger has an autistic brother and the job is a break for him. It’s likely the first-time mom is tired, depleted of everything because it all goes to the baby and she’s never had any experience with autistic kids because her friends are all young first-time moms. Maybe the substitute mailman is single and childless and normally delivers in a retirement community all day. And, the childless neighbors, or even empty-nesters, don’t get out much with people with children, are elderly and didn’t grow up in the face of rising autism diagnoses, or the husband is dying of cancer but they are too private to talk about it. In some peoples’ day, sharing personal issues wasn’t the norm. Lots of things out there that we just don’t know, and quite frankly, I don’t see us taking the time to care about — which, uhm, isn’t that the same thing we presume they’re doing to us?

So before I get up in arms today because Dairy Queen ‘froze out’ autistic students by asking them to leave (read the story here: Dairy Queen Freezes Out Autistic Students) I’m going to assume that just like most media stories, there’s more to it. Maybe the Dairy Queen management didn’t like having their front sidewalk blocked by a bunch of noisy kids scattering lunch items. There’s a really good possibility it had nothing to do with them being autistic or even special needs — as you so often see people say “You don’t ‘look’ autistic. There’s no autistic ‘look,’ they are beautiful normal looking children.” (That comes back to bite us, doesn’t it?) It’s likely he was frustrated with a mess/noisy crowd outside his door and simply didn’t want to deal with it. Is it right? Heck no, he’s an ice cream store, he should deal with kids, expect kids to be noisy, but I’m not going to boycott Dairy Queen or call the media to say autism discrimination. Pick your battles. Don’t you want more time with your children anyway?

I hear a lot about how particular groups of people are looked at negatively because they’re always upset about something. Do we want to be those people? I don’t. I want to be the people crusading for what’s right and fair for our children, but just like any other mom. I want to bear in mind that I’ve got a lot of years ahead of me, and I’m sure there will be legitimate battles to fight. I’m going to save my energy for them, and hope that I’m not looked at as wacky because too many people choose to fight every little injustice. Let’s face it — life’s full of injustices. Life’s not fair. (Would autism be around if life was fair?) Let’s save our strength for the bigger things, and not be people flying off the handle at everything we hear, particularly those things that don’t affect us. And don’t flame me with — “but it could be  you next time.” True, it could be. I flew into Raleigh-Durham airport within days of the incident where the autistic child was kicked off the flight, and I flew the same airlines, so I know the “but it could be you.” If it happens to me, and it’s legit, I will address it, as the school director/principal of the autistic kids that visited Dairy Queen did. Let’s let that suffice instead of boycotting the chain, running up our phone bill with calls, and stressing ourselves over making sure everyone knows what the store did…or didn’t do. But be sure you know what you’re addressing, and look at where it fits in the big picture. Your child probably needs you, stress-free, more.

When I picked up ds aka Barnacle Boy from school, he walked out of the gate, in his “I feel naked in this” Tony Hawk tank top and shorts, sporting a face that said he was upset but didn’t want it to be immediately obvious, only slightly obvious. On the brisk walk to the car (which happened to be down the road and across the street…long story that maybe I’ll convey later) he explained how upset he was with this particular girl in his class. Let me preface that by saying the girl does bully him, it’s been reported, and it’s being handled. Yet, looks like she’s either really sneaky, getting away with it somehow around his aide’s increased supervision, or he’s exaggerating. Hard to say.

Anyway…we get to the car, and on the one-minute drive home, his speech is coming faster and faster. We make it home, and he continues. I warn him that he’s dangerously close to his five-minute limit on complaints about a specific topic, and he continues, taking every possible second to get it out of his system. Then, BOOM. It hit the fan. Just as dh walks in the door after picking up my car (my new car, mind you, which needed a new windshield already) and the bank (we’re attempting an out-of-state move, so property has been chosen but needs to be bought)  to hear ds explode in anger. It escalated to self-injurious behavior and overall, it was a good hour to calm him down.

And, it was out of the blue. He’s been better lately, at least in terms of this type of meltdown. He still gets upset, but social/control issues have taken top billing lately. His headaches virtually disappeared when he was out of school and on vacation, but he had one yesterday and is reporting one now.

He’s still not okay, but dh has it under control. He just sat with him while he did his one homework assignment, and we gave him some pain reliever. So why am I blogging right now? I’m completely and totally unnecessary at this moment, other than getting dinner finished. And I’m okay with that. I do Meltdown Control, referred to as “MC” in the future, every day until he gets home. Fortunately, he’s home early, able to pick up BB from school, and be here the rest of the night with him. They look pretty darn cute cuddling on the couch, and I’m darn happy to let them stay that way. MC is exhausting.

Last week we headed back east…to the south, specifically. Rural south. Family is there, and so is almost everything I love about rural life, to the point of considering a move. Again. This time, we are really trying to make it happen. More on that later.

We flew. Just four of us this time. Got on a plane from our local airport, had a layover in Atlanta, and took a hopper from there. A turbulent hopper. Little guy was getting claustrophobic and had issues with the bumpiness. Did I say it was turbulent? We apparently flew over and around those tornadoes that were hitting Alabama last week, but I’m not sure how far around we went, we went up and down more than either of the kids liked. Or me, for that matter. I like to fly. Love it. But I could do without the nausea bad weather can bring on.

The flights, otherwise, were without incident. Both flights there and back they allowed us to pre-board. Only one gate agent told us to get in line with the Zone 1 people, but we got in line up front and there were no hassles, crowds or anything other form of flight-induced torture. I know we got a few looks when we got in line after the announcements about needing to pre-board for small children, wheelchair or other assistance. My little guy isn’t ‘small’ in the eyes of most, though he is still a small 8 year old. We just smiled and continued onwards. The only issue that got a bit hairy was when the baby whoneverstoppedcryingtheentireflight bugged his ears. After a while, he had a hard time. Said baby was two rows behind us and mom didn’t appear to be doing a whole lot other than bouncing him in his seat. (Note to moms with small babies: flying is fine. I did it myself, it’s a necessary evil, and you have every right to be on the plane that we do. But, try. There were 8 other babies on the flight whose moms were a little more, let’s say, energetic about trying to stop the crying. Standing up during non-turbulent sections can work. Something more than “shhhh” and rocking, please.) Ds was laying across dh’s lap, hands shoved in his ears, dh trying to block the sounds. Blessedly, he made it through the flight, only to have every slow person in the world in front of us during deplaning. (Note to travellers: get your luggage settled before it’s your turn to go up the aisle. It’s not time to rearrange your bag, brush your hair, dial your cellphone or chit-chat. Get. Off. The. Plane.) Ds was then really claustrophobic and jumping in the aisle to get fresh air. One aisle let us out in front of them. Thank you. Even that helped.

But, we arrived home in one piece, everyone happy, tired and missing the south.

Flying with autistic kids can be rough. This isn’t our first time, so we had quite a bag of tricks, literally and figuratively. It may not be perfect, and they may make some noise, but what amazed me the most is that people feel guilty about staring at or complaining about a crying baby with an apathetic mom though they don’t hesitate to turn and stare at a young child squirming in his seat saying he can’t breathe and may throw up. Even though the baby cried the whole flight and the young child squirmed 10 minutes. People, get a grip.

I will fly again. Same airline even. (Delta, your attendants were great!) I just may take better earphones for him next time.

Now that we’re back to reality, and we all know reality can bite, we have the emergency IEP this afternoon. I’ve got no less than 30 pages of documentation to take about social issues, studies, programs, research, experiences, you name it. No, I don’t expect them to read it during the meeting but it will be reference material for me to back up our requests, and they can read it after. I typically don’t sign IEP paperwork during the meeting itself. Dh and I will be there at 3pm sharp, ready to move to the next level. These morning panic attacks and afternoon hysterics have got to stop. And I’m not blaming ds — he’s doing the best with what he’s been given. We don’t throw small kids in the ocean and say “swim, darn it, and quit splashing me.” So, why do we expect a kid to be thrown into a sea of socialness without the proper training/skills? Not happening for this little guy anymore. And I feel bad I let it happen this long.

I’ll update after the IEP. Maybe I’ll even get back to blogging more frequently. I do have high hopes. I also have a full-time job and a litany of appointments over the next few weeks as my younger dd graduates from confirmation and 8th grade. (Think dental filling, dress fitting, orthodontist consult, vision exams for her and I, amongst others.) I have so much to say, and so little time lately. (Notice I didn’t say “so much to say lately?” I always have a lot to say.)

And I’ll talk about the possible move. The whys and the hows and the whens. If it’s supposed to happen, it’ll happen, without too many difficult hoops, so we’ll see. I do know it’s a better lifestyle for ds. I just have to be sure it’s right for the rest of us, too. Leaving California and this housing market makes it hard to come back too easily.

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