Autism Watch: 2007

Posts Tagged ‘school

I opened up my blog page, thought about the title, and then realized, why am I thinking on this? I’m definitely over-thinking this. So I decided to cut to the chase: this entry is about school and autism. Voila, the name of the entry.

First, the disclaimer: I’m tired and lacking creativity.

I slept well last night. Went to bed at 11:30 after watching the two-hour finale of Masterchef (yay for Jennifer!) and I passed out as soon as the TV was off, but 5:30am comes early. My mornings consist of getting BB ready for school, signing in to work, working, taking him to school, and working until I pick him up. Then I work another 30-45 minutes or so. I’m used to that, but when you’re dealing with your school every single day, and dealing with your child venting about school the rest of the time, it’s tiring. It sucks your creativity like a Dyson picks up dog hair. Sorry, BB’s service lab sheds like you wouldn’t believe so it’s an analogy all too in-my-face.

Moving on…these last couple of weeks have been the proverbial rollercoaster. We have a great day and things look good. The next day blows big chunks and he doesn’t ever want to go again, once the anxiety-induced migraine goes away and he’s willing to talk as opposed to crying and yelling. Fun stuff.

IEPs are good things to have. Nice handy legal documents that explain how things should work and give people guidelines. But much like a restraining order and a persistent abusive ex, it’s only a piece of paper that totally depends on people to follow it.

One teacher/administrator who doesn’t feel the accommodations are right, doesn’t want to do the accommodations, or just has assumptions about your child and the diagnosis can blow the whole thing.

Long story short, that’s where we are right now. We’ve got a wonderful team around us, albeit a busy one, and we have one person in particular who gets BB. And one person who doesn’t…and doesn’t seem like she wants to.

BB is burned out. I’m burned out. Dh is burned out. We’re at the crossroads of: This is Your Last Chance to Make it Work Road and Homeschooling Highway. Not a place I wanted to be but then again, I never wanted to be a part of the autism club either.

BB is happy tonight. He is positive towards tomorrow, so I will be, too. It can be a hard thing to tell yourself: think positive, don’t let the last two weeks of hassles get you down, shrug it off and have faith. But I’m trying. Trying hard, and letting BB lead the way. He teaches me more than anyone I’ve ever known.

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.

It’s day 4, and we almost didn’t make it to school this morning. After yesterday’s headache, he was ‘off’ all night. Edgy, easily irritated and seemed unable to focus on one thing for too long. At bed time, we had a major meltdown on our hands. Apparently his service dog hasn’t slept well the last two nights and it’s keeping BB up at night. I knew about this, but I didn’t know it was to the point of near hysteria that he’d have a third night like this and keep BB up again. After 15 minutes of him yelling and crying, hitting himself and us having to stop him and try to talk him down, he decided to listen to some of our suggestions for keeping his dog happy at night, thereby allowing him to sleep.

It took a while, but with some furniture rearranging, we moved the carpet over to one side and angled BB’s bed so that the service doing, who we’ll call “C,” was only able to roam one side of the room, and with the carpet there, BB wouldn’t be able to hear his nails on the hardwood floor. C’s bed was over there, and BB could still be near him without the noise. We then watched Dragon Ball Z Kai together (not the world’s best show, but he loves it) and he went to sleep, 30 minutes later than normal, but it was barely dark out. He insists on being in bed no later than 8:30, some nights as early as 8:20, so I was worried this would upset his sleeping pattern but he seemed fine.

Fast forward to 6:15am, when I wake him for school, and I hear him moaning as I walk down the hall. He said he’d woken up about 30 minutes prior with a ‘super bad’ headache. I get him a pain reliever immediately, massage his head, offer him water, and do all I can to get him to be willing to go to school. That’s where I felt like a really bad mom, because I don’t want to leave my bed when I have a migraine, yet the schools out here have the world’s most ridiculous policy for attendance. It doesn’t conform with the state’s policy, so we’ve pushed it a bit as the state allows for 10 days of unexcused absences, and four that you have a doctor’s note for, which is fair — I really do believe kids need to get to school and it’s important to make rules — but what’s not fair is that our school starts threatening truancy at day four and makes you attend an attendance meeting. You quote disability laws and they state that we have to have a document on file. Uhm, I think the IEP and medical diagnosis of autism and migraines should suffice, yes? But no, we have to have a note each year on file and even then, they want to make sure we’re ‘being truthful’ and not taking advantage of that. So you end up taking your child to a doctor for a mild cold that’s given them a temp of 100, not enough for a doctor to do anything more than write a note that you were there and enough for you to pay the bill and expose your child and yourself to even worse illnesses.

I digress.

I finally got him up and moving this morning and got him out the door..a few minutes late and with him being oh so slow that it was really hard not pushing him to move faster. After all, tardies count against the 10! We have to weigh the balance between being a mom not making your sick child go somewhere that he’ll only be in pain, and the school hassling you. I partially think it’s the area — we’re ex-homeschoolers and we believe that while schools are important, they’re run by humans and parents have the utmost choice, and people locally tend to believe what school staff says without question. I also think that I’m just burned out on years of expectations that are unfair. He’s sick, he shouldn’t be at school where it’s only going to make him worse. If school is making him this anxious, it’s not up to me to just continuing to increase his medication, but to them to find out what they can do to decrease the anxiety.

So I sit and wait for them to call and give me an update. I’ve already spoken with the nurse first thing, but it’s up to the teacher to let him go to the office if his head hurts, and if she doesn’t let him..well, I’ll be there in the office first thing, but that won’t fix the day for him. For him, when he has a problem with something once, he’s put off from ever trying it again. Let’s just say that the day that It’s a Small World at Disneyland broke and we were ‘trapped’ for 15 minutes, five years ago, assured that we’ll never ride it again. I liked that ride.

For those of you dealing with anxiety, what do you do? BB’s headaches were far less frequent over the summer, in the environment without bright lights, too much noise and stress. Now that he’s back at school, we can see him getting stressed and anxious, and we feel the headaches are a side-effect. We want to try something to help — biomedical is the first goal, followed by medication but only if absolutely necessary. How do you handle autism and anxiety? Where do you see it cause the most problems?

Yesterday, my husband talked to someone who said “Oh, and tell <our daughter> hi from us!”

Last week, someone said “And how’s <our daughter> doing? And xxx and xxx?” (XXX would be our older kids.)

Family isn’t immune — “Can <our daughter> come to the beach with us?”

We answer their sentence, then say “And BB is doing great…” I sometimes add “Thanks for asking!”

Apparently it’s not an acceptable answer — I’m supposed to just ignore the fact that they ignore him. My “Thanks for asking” comment is usually met with silence.

It’s like autism makes my son the invisible boy until we bring him up.

I realize that sometimes people don’t know what to say. You want to be careful not to say the wrong thing, so you opt not to say anything. But if you recognize yourself as doing this — I think we all have situations where we are at a loss for words — at least say “How’s <BB> doing?” You don’t have to specify, you just need to ask how he/she is doing. It means everything to us when our child is seen as just as good as everyone else’s child. Because he is. We all like to think our kids are the cutest, the sweetest, the smartest, the best..problem is, we all think that way, and a smart parent will realize that.

Autism doesn’t mean my son is dumb. In fact, quite the contrary, he’s incredibly gifted and working at an academic level years beyond his age.

Autism doesn’t mean my son is unaware of what’s going on around him. He’s surprisingly adept at listening to conversations while still focusing on writing HTML for a game he’s designing. He can hear a song once, while playing a game, and repeat it note for note, word for word, weeks later, without ever hearing it again.

Autism doesn’t mean my son is unable to do something outside of his scope of interest. Just like any other child, he’s got a lot of abilities but chooses what he wants to do. In fact, he’s probably more in tune with his interests and abilities than people without autism.

Autism doesn’t affect his hearing. He can still hear you when you let your child get away with calling him a name or when you whisper “It’s okay, go do your thing, BB will be fine on his own.” Again.

Autism doesn’t render him incapable of comprehending your speech. He knows what your words mean. He knows what it means when you say “I’m not going to keep coming to visit you if you don’t hug me.”

(Something I want to point out: that won’t make BB or any other child with autism want to hug you.)

Just because you don’t understand a child with autism or you don’t want to understand a child with autism doesn’t give you the right to be mean. Because that’s what it is: being mean. Ignoring a child for behavior he can’t control is like refusing to help push a wheelchair uphill when the person is a paraplegic, and who would do that?

Next time you deal with a family with a child with autism, ask about the child. Even if you have to fake it, ask. And if you have to fake it, maybe it’s time to re-examine why you feel that way — why does it bug you so much to acknowledge that this family is dealing with a child with special needs? Do you have to agree with everything someone does to like them? No, so why is a child with autism-related behaviors any different? Maybe it’s time to stop letting your personal feelings get in the way and just be the friend, the Godmother, the cousin, the aunt, the grandfather. That means loving the child for whomever he is and overlooking the rest, even if you don’t agree with the way the mom and dad parent him. Love him and respect him, just like you would any other child.

It really is that simple.

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?

 

It’s a party, lemme tell ya.

Ha. Anyone who has a child with autism can smell my sarcasm a mile away, yes? What’s that, ten miles? Why yes, of course. It’s pretty powerful sarcasm.

Barnacle Boy (who is still my Barnacle Boy, btw, even at ten — he wants to see me first thing in the morning, cuddle, be near me and runs up and kisses/hugs me sporadically) is obsessed with computer games. He writes code, scripts games and is planning on being a computer hacker for the government someday so he can help catch the bad guys. Computers are his thing, and he definitely has the aptitude..and the attitude, as he’s not so much for social skills in a lot of ways and he’s got a lot of interest in being self-employed as well as the creativity and ingenuity to invent amazing things. He’s fascinating to listen to, can have a wonderful (one-sided) conversation and he’s got such a sense of humor interlaced with the vocabulary of a well-bred adult. He’s also very routine-oriented and likes things a certain way, which makes showing our house as we sell very…interesting. But he’s going with the flow.

Anyway, BB has his routines, and they are to play computer games much of the day during the summer. With the heat index regularly over 100, it’s not horrible, because he can’t really play outside for more than a few minutes at a time, other than swimming, and he does a lot of that. (But we even have to be careful there, he had another bout of swimmer’s ear last month.) As summer goes on, he’s beating a lot of the games and tiring of some of the things the newer players do. I try to teach him that those players could be much younger than him, and that not everyone has the same level of skill but that’s a hard thing to teach. So what do I hear a lot?

Every mom’s nightmare: “Mom, I’m bored!”

I can do like I do with the rest of the kids and threaten him with chores, but that buys me only a couple of minutes. Other kids scatter like roaches in the light, but he stops for a couple of minutes, thinks, and then again says he’s bored. I have pulled out movies, made cookie dough for him to shape, bought art supplies, you name it…so what did I resort to today? Buying more online game subscriptions. Cancelling two others. It’s a revolving door. So I’m set until school starts in a couple of weeks, right? Ha. It took four hours before I heard “Sigh. I’m going to sign off for a bit, I’m tired of this game.”

Out comes $8 and his sister to take him to McD’s for shakes. Forty-five minutes, and $7.40 later, they are home. Shouldn’t $7.40 buy more than 45 minutes of non-boredom??

I am trying to get him into new things, but that’s a lot harder than it sounds. He’s got the world’s greatest treehouse, with a new sling chair installed, but it’s too hot. He’s got this awesome rip-rider..too hot. Wii? Played all the games. Board games? No, only Stratego..and then he kicks my butt. Every.Single.Time.

I love having him home for summer and I don’t really think it’s long enough, but maybe year-round school suits his needs. We’ve already found out his teacher, and next week, I need to meet with her so he can get a chance to be familiar with his class before the first day, and I can be sure she’s familiar with BB and his needs. It’s in the IEP, but you know how that goes.

Stay out of the heat and if you are below 75 when you go to sleep, hush…

Recently, I had a discussion with someone about how my advocacy style was so different from hers. She’s gung-ho about telling everyone she meets about autism, blogs about it frequently and does it without the protection of anonymity, and most conversations end up including autism to some extent. Me, on the other hand, I don’t mention it so much. Not only does my husband not care for it when I tell a random stranger, even for the purposes of perhaps helping one more person understand our kids, but I am tired of getting the ‘huh? uhm, yeah, okay’ response. I blog with anonymity, referring to my beautiful son as Barnacle Boy, a childhood nickname due to his attachment to me (still) and don’t want him ever reading this when he grows up. I also don’t want the people that I run into to feel like they aren’t going to be open with me for fear of showing up in my blog someday. (I know people who’ve found themselves the subject of a negative blog entry or comment, and being the social outcasts we autism moms already frequently are, why up the number of people who don’t know how to talk to us?) I also try to not include autism in every conversation — let’s face it, after almost seven years of a diagnosis, my friends know what life is like, they understand when I’ve had a bad day, and I only need a few words to convey what’s really going on. Saying “school called again” with a sigh is enough. Or just saying “it’s been a long day” suffices. They get it.

I think a lot of it has to do with the fact I’m not immersed in treatment 24/7 right now. I used to be. I had to be. My BB would bang his head on the floor in pain and/or anger and frustration, and he’d pull out his eyelashes. He’d bite himself, and us, tags and normal clothing textures made it hard for him to get dressed — and stay that way — and crying babies would throw him into a tailspin. His communication skills were off, he had no eye-contact, and the random stranger touch freaked him out. And then there’s the running away, the sensory issues, the other behavioral issues, and the social skill deficits. In many, many ways, there’s been vast improvement. Most people would look at him now and wonder why we’re so worried. But those would be people who didn’t see where we’ve been. They didn’t see us with bitemarks and bags around our eyes from lack of sleep or worry. They didn’t have to sit with us through a blood test to check his blood sugar level that was too high during last month’s physical (which was a wreck itself, because he hates being touched by strangers and of course, the doctor wants him to be almost completely undressed and that doesn’t fly with BB) nor go with us to the dentist, which was only two months ago that we had to switch because he bit the guy and caused him to novocaine his own hand.

But we know. And that’s why I continue to advocate, but in my own way. I focus on educating those that have direct interaction with BB, or those that ask me because they want to know more or know another family dealing with autism. I still throw out info to the random stranger sporadically, but I figure that unless there’s a reason, I don’t need to necessarily give them our story when I don’t know what they’re dealing with at home. Years ago, a woman felt the need to chastise me in public for telling my kids, while I was writing a check in a crowded store, to quiet down.  “You are so blessed to have them, you should remember that.” Uhm, okay? “Yes, I am blessed, I know that because of fertility issues that required a lot of fight to get my family size to where it is today, which isn’t your business anymore than telling me to not tell them to quiet down. Thanks and have a nice day!” Moral of that story? You never know what that other person already has dealt with, or is dealing with, so pick and choose who you give the autism story to. My feelings are that advocacy is most successful when used judiciously. Sometimes we are advocating for ourselves — it makes us feel better, but just makes the other person feel worse, and it is no longer advocacy.

My goal is to advocate for my son in a way that helps him, and the autism population at large, but without constant intrusion or sounding like a broken record. I have three other children, a full-time job, and a husband. I only have so much time and energy to go around, and for my sanity, I need to move on to other topics. My friends need me to move onto other topics. They need my listening ear, and to do that properly, I need to be able to focus on them; the time will come when I need them, again, and the friendships I’ve kept while on this autism rollercoaster are more valuable to me than I can possibly ever convey to them. The few strong solid friends who I will call friends forever are worth more to me than the many that I lost because they couldn’t understand why I couldn’t get through a five-minute phonecall without hearing BB cry or get upset in the background; they couldn’t deal with my being unable to go out to their house without BB having a meltdown or they’d get freaked out when he’d hide under a table; they couldn’t risk their child having to witness mine crying because he was again left out of a game or because I wouldn’t let the other kids call him names; mainly, they refused to understand autism and my son’s odd professorial-type of vocabulary fooled them into thinking he was just a brat and we were bad parents, with the fact that we had three other children, all older, who weren’t ‘brats.’ The list goes on, and there are times I wish I could really give those people a trip through time to show them what life was like, what we’ve been through, and most of all, what my amazing brilliant son has gone through, and how far he has come.

Our children are the epitomy of courage. They don’t give up. They are examples and should be seen as the brave people they are and that’s where I want to focus my advocacy efforts for now. I don’t want to raise money to go in some administrator’s pocket or tell me what gene my son has that’s not right, nor tell me some other reason why it’s my fault he has autism. Sure, I want to know the reason so we can prevent other families from going through this, but I also think money rarely goes to the families who need it the most — those dealing with it now. One-income, two-income, ‘rich,’ poor, it doesn’t matter. It’s too hard to get help, and as a result, we learn to do it ourselves, and that’s advocating for our child in a way no one else can do anyway. So even when we’re not publicly advocating, we’re privately advocating, and that’s enough for me.

 


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