Autism Watch: 2007

Posts Tagged ‘teacher

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.

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It’s 8:19am. I haven’t received a call yet. I know it’s early, but I have hopes that his first day is problem-free. I dropped him off at 7:14, fifteen minutes before he has to be in there, but early enough for breakfast if he wants an extra snack before the day starts. He ate his normal homemade chocolate chip waffle before we left and usually eats the breakfast there at school too (which they deliver to every class for every student) but said he wasn’t hungry today for school breakfast, so I think there were some nerves.

BB likes to wear Mardi Gras beads. Everywhere. A few around his neck, a couple around his wrists, and sometimes, even around his ankles. (Two weeks ago at his ped appointment, another child saw him and laughed out loud. Mom looked, smiled, but said nothing to her boy who was obviously laughing at another child. Nice, eh?) Today he wore them again, minus the ones on his ankles. I hope his teachers leave him be and he’s not teased. He is his own person, and I love that he has his own style and is comfortable with himself; I just wish others were comfortable with his differences and learn to handle their responses better. I see the problem as being with them, not BB, and I wish teachers taught students more frequently to be glad for the variety in people, and to appreciate those unique qualities rather than mock them.

I have high hopes things will go well. He is in the gifted program, and that means a lot of changing classrooms. I took him in last week to see those rooms that were new, so he could transition better, but I also don’t know that the teachers were aware that he even had an IEP and that I was there solely to talk to him about him in detail, not so we could not have to attend Open House. (I hate Open Houses. There, I said it. Every parent wants to talk to the teacher, you all walk around the crowded room in tiny steps and the parents who know each other stand and talk, which means that it’s one more opportunity for us to be ignored as we know no one, and those that we do know don’t really have much of an interest in doing more — small town life is not easy to get involved with if you don’t have active family here or weren’t raised here.) The main reason we went to meet them was for him to have uninterrupted time to get to know his teacher(s) a bit, to scope out his location, to make a seat request if we weren’t happy with the existing one (because of his eyes and because of his space issues, and because some teachers find that isolating him makes their life easier) and to advise them of a few things that would make his and their life easier. So much for that, the ten minutes we got allowed basically no time for that, and didn’t even confirm for us that they’d seen he even has an IEP. For all we know, they aren’t even aware he has autism. The asst. principal used to handle this type of thing, as well as classroom assignment, but he was moved. Not sure if any ball was dropped, but time will tell. Until then, I don’t want to worry.

Yesterday, he decompressed from being gone all day Saturday at the birthday party. He had SO much fun and wasn’t a problem at all, and we’re thrilled. Onwards and upwards, right?

 

From school issues, that is, to be specific.

We love the school system here — some odd rules (like their interpretation of the NCLB act, which causes some serious attendance issues) but the educations the kids are getting are above what they were getting in California. People don’t sweat the small stuff, and the classes are small enough, as is the total school population, to allow for personalized help and admin that gets to know each kid.

But…and you knew a but was coming…I don’t know of a child with autism who doesn’t face some type of school issue, so I guess our bliss had to end sometime. And last week, it did.

It began with BB sharing stories on his daily ride home about small occurrences at school that weren’t handled like he thought they should be. We tried to talk him through them all, and give him tips on handling them, including not making a big deal out of everything. Then came the big day. Awards day.

Let me preface a bit: I hate awards day. Awards in theory are nice, but I can’t think of a ceremony that actually went by without an issue in all BB’s years of school. See, every school BB’s ever gone to has a Student of the Month or some other award that is basically a popularity contest where the class votes, or the teacher chooses. Even in a small class, there aren’t enough months in the school year to ensure all children get it, so you have children left out every year. And then you have some, like my little autistic sweetheart, who has never once gotten it so years go by without him getting it. Nor does he get the ‘good citizen’ type of award. By virtue of his disability alone, he’s already off the list for consideration. You can’t get that award if you suffer space issues at your desk or talk too loud because you, well, just talk too loud, or because the noise gets to your ears so you have to cover them from time to time. He picks up on it, he knows it, he’s tracking it and now he’s truly bothered by it, so I dread when they go to hand out those awards and his face falls. Again.

This year, first awards ceremony of the year, and of course he doesn’t get perfect attendance. He doesn’t get the great kid or good citizen. Sigh. Then honor roll comes around, an award he’s gotten every single opportunity, and he’s very proud of it. I get my camera ready (after all, by this point, I was sitting there for an hour solely to see him get this) and his name wasn’t called. They end the ceremony, and I have a child quickly melting down. His fists are balled up, and he’s rubbing one eye so hard it’s red all over that side of his face. He’s shaking. He’s pissed. No other way to put it. And I was quickly following, but because I’m not autistic, I was able to control my upset and focus on calming him. I leave a very unhappy child and get to the car before I lose it when on the phone with the husband, who is equally pissed. Great, three pissed people and no resolution, so I march back in. Have a talk with the principal. Cry a little, get embarrassed but realize that at least he sees how very important this is to us. Leave with the knowledge he’s on top of the situation, he’s working with the nurse (where my son’s now lying down with a headache) and I head home to wait for the phonecall he promises…and it comes not too long after. It was relieving, but what we did learn is that his grade had dropped in one topic and no one told us. Wow, gotta love that great communication that should have taken place. Another situation where they really don’t get how important this is to him, and how extremely proud he is of this longstanding award.

He comes home later, with another upsetting but too long to write about story that happened. The husband stepped in this time, and as of this morning, I think we’ve gotten that resolved, but it’s going to take a lot of close watching by us to be sure that he really isn’t pulled away in a corner at a lone desk or disbelieved again, allowing someone to bully him only because the other person doesn’t have autism so she wouldn’t lie. Sigh. Again. I was ready to just homeschool that afternoon, but I know that for now, it’s still not a good idea.

Just another day, right? We’re off-track now for a few weeks, and he’s really enjoying the relaxing and sleeping in. Problem is, he won’t sleep until way late at night, and he’s up on/off throughout the night. He actually even asked to nap yesterday, after we took a field trip to celebrate my birthday, but he opted not to do it in the end. I need to get that straightened out or he’s going to have a tough time after he gets back to school!

So it’s not cryin’ in his beer, but it was pretty sad to see nonetheless. And it was actually his dad’s coat.

As I shared earlier this week, daddy’s on a business trip out-of-state. I wasn’t sure how much BB thought about it, but last night, at bath time, he saw daddy’s Nascar jacket hanging in his closet. I thought he was kidding when he grabbed it and stuck his head inside, but within two seconds, I realized how very seriously sad he was. The sobs were soaking the jacket and I had to pull him away for a mommy cuddle, and a promise that he could email daddy when he was out of the tub. Twenty minutes later, he was writing daddy the cutest little (or not so little) email you’ve ever seen. I know it made dh’s morning to see when he woke up today, three hours ahead of us. When he called BB to talk to him this evening, BB hesitated for a sec, then when he realized it was really him, the DADDY!! was probably heard all the way in PA even without the phone. Too cute and worlds apart from where he was when daddy was traveling a couple of years ago, or even last year.

Today he had a good day. He was a bit mouthy and controlling, but that’s easy compared to some things we’ve dealt with. We made cookies, had a really good dinner of salmon and leftover knish, and then settled down to watch an episode of  The Othersiders. If you haven’t watched this show, beware — it’s a kid show, done by teens, but is pretty creepy! But, it was a good excuse to cuddle. BB made us a ‘bed’ of pillows and blankies on the couch, and he ate some chocolate while we held our breaths to see what the investigators found. (Is it bad to say I was glad when the show was over? Did I mention it was creepy?) Now we’re snuggled watching All Dogs Go To Heaven 2 on Video on Demand, a favorite benefit of our new-ish U-verse TV provider. (Dare I say we’re entirely thrilled we can finally record on any/all TVs instead of just the ‘brain’ unit downstairs?) He’s playing DS, and I’m on the laptop, so I’m not sure how much we’re watching, but we’re enjoying co-existing. He smells like vanilla sugar, courtesy of the Bath & Body Works shower gel I let him use in his epsom salts bath, and I’m thoroughly enjoying this nighttime routine.

Tomorrow morning, we meet The Teacher. I’ve heard only good things about her, so I have high hopes it will go well. I’m hoping to give her the Top 20 Things About BB list, verbally, inside the 20 minutes we have. One per minute, I guess.

Friday’s Mommy and Me day — I have half-day Fridays (but a spacebar that isn’t working completely) — so we are going bowling. First time together, first time for me in many years, and first time for him at all. It’s just him and I and our $1.29 per game coupon…and I don’t know how to score. Are bowling lanes automated yet??

Enjoy what’s left of your summer before school starts. Ours went way too quick.

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.

Wow. Autistic children are being kicked out of church, restaurants, school, airplanes, and now the Girl Scouts? Girl Scouts Reject Girl With Autism (ABC News)      ADA anyone? I could share my feelings on how everything else in the world is protected, down to protecting me from harassment if I choose a blue tube of toothpaste over a green one, but discriminating against invisible disabilities is fair game and legal….but I’ll spare you and myself. After all, tomorrow is Thanksgiving, and I’m grateful that our kids are still allowed to go to the dentist and doctor’s office, no one’s been kicked out of there yet, right?

UNC Autism Study Expanded  (Orange MyNC)   I’m all for studies that don’t try to blame someone but rather look into something that helps for early intervention.

How to Prepare Students With Autism to Succeed in College    Good advice, though honestly, the thought of planning for college right now seems difficult. I just want him to be successful in the second grade.

Autistic Boy Hopes to Get Missing Parrot Back  I realize this isn’t ‘news’ in the same sense the above links are, but someone out there, have a heart. Give the kid his parrot back. 

Florida Teacher Who Let Students Kick Autistic Child Out of Class Suspended   Can you say “it’s about time?”

And more on the above: Mom Claims Teacher Abused Boy  I don’t even know what to say.

Lots of stories out there too about new programs, new schools….my selfish Thanksgiving wish? That something will open up in my black hole of autism schools in Southern California, a school that’s affordable and close enough for my little guy to attend. We can always hope, right?

I picked up ds early from school to head to his regularly scheduled neurologist appointment. As we pull onto the carpool lane of the freeway, he begins to tell me a story that made me want to turn around and head back to the school…except I couldn’t, a neuro appt in a land far, far away awaited.

As close as I can understand, a group of ’20’ (maybe exaggerated in his head? maybe not?) kids put their hands over his eyes, covered his mouth so he couldn’t yell, and grabbed his arms, pulling him into the bathroom. He yelled to his friends, yet they did nothing. (He only has a few friends he plays with repeatedly, mainly one anymore, so this doesn’t surprise me.) He pulled away long enough to ask why he was there, and to let him leave, and they said “No, you’re in jail.” He breaks away again, gets out, and they try to re-catch him. He runs outside to the playground area, just running anywhere to get away, and two friends see him. Now, it must look fun, because they joined in to help him get away. They almost had him again, but when he ran far enough and his little friends were persistent, they left him alone. On a bad note, he doesn’t know who any of the kids are but one. On a good note, he doesn’t know who any of the kids are but one — which means they at least aren’t from his class.

Tonight is Back to School night. We will be setting up an appointment to meet with Admin in the morning. When he said “they took me into the bathroom,” I had to find a calm, discreet way to ask him where they touched him. I had to ask him if they ever used his name, to see if it appeared random. And I had to ask if he told anyone. He did, a playground proctor, and her words, per ds? “Poor kid.” Period. Nothing else was done.

But something else will be done. My son was dragged into a bathroom with strangers, against his will. Big deal or no, depending on who you are and how you look at it, he was taken somewhere against his will, people touched him, and he has no way of knowing if they’ll do it again. And no one did anything?

Mom’s unleashed. Admin will step in, I’m sure, we are blessed with a good team who truly care about ds, but he’s only in second grade. And I never heard of a group bullying incident like this.

I’ll update tonight, or tomorrow, depending on when I have anything to update with. Think happy thoughts.


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