Autism Watch: 2007

Posts Tagged ‘IEP

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?

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…

There’s no better title. Those things together are giving me grey hairs this week and last. But hopefully, we’re on the path to resolution.

In short, the school’s discipline plan, their focus on negative reinforcements and their approach to my son overall are just not working. We were left at a total loss, with no clue what to do next short of calling an IEP meeting, and we didn’t want to do that until we had a realist, reasonable and fair plan in place, and that’s going to take some effort.

So I called in a specialist. She’s an angel, and she gets it. She gets my son. She knows her stuff.

To talk to someone about my son and have them listen, to have them nod, to truly understand, to not interrupt me, and to not defend the teachers=priceless.

I don’t know the whole plan yet, but training is occurring this week, for everyone involved with my son, and a volunteer stepped forward to take a lead role with a unique position. (I need to hug him when I see him.)

My husband told me last week, see, some days are awful and you feel angry and frustrated, but if you hang tight, things will work out.

Things got worse the two days after he said that, so I wasn’t convinced, but today, I am definitely feeling more confident that we can work things out in a way that gives me son the proper supports and accommodations without too many hardships for anyone else.

We know we’ll have an IEP in a few weeks, but that gives us some time to get things in place and have better goals in mind, as well as restroom usage accommodations, and a daily communication log, as we’re frequently out of the loop until things get bad, or until BB tells us. Not a good place to be when you walk into an IEP and hear a bunch of bad things and feel totally caught off guard.

I’ve taken a lot of Excedrin the last week.

 

Home?

Yes, but it needs to really kick some butt at school.

What a week. The next time someone tells me “you’re so lucky your child is verbal,” I may have to say “yes, I’ll remember that next time I’m in the office dealing with yet another punishment for his verbal behavior.”

Folks, high-functioning autism, mild autism, Asperger’s, whatever you want to call it, is no picnic. It’s not a party. Not a cakewalk. Definitely not easy street. De-de-definitely not. (Sorry, the Rainman movie came to mind.) It’s autism, but on a level where they’re given enough independence to get in trouble and where their words can be used against. It’s autism, with its meltdowns, self-injurious behavior, lack of friends and social skills, obsessions, repetitive behaviors, lack of proper communication, sensory processing disorder, and other behavior issues. Just because he speaks and can attend a regular class doesn’t mean the autism is any less ‘real’ than any other severity of autism. He still struggles daily to handle himself and get through the day. He isn’t being controlling to be sneaky or be a brat, but instead, it’s to have his environment be comfortable and the restricted, routine way that makes him most comfortable.

Despite all that, daily, our kids are lost. They fall through the cracks but there’s those with ‘real’ disabilities to deal with. They appear normal, whatever that word means, to those who aren’t educated specifically in the autism spectrum, with focus on the word spectrum. Their ‘normal’ appearance is so misleading that others forget and try to fit them in the same mold as the neurotypical kids are in, and then they complain because the results aren’t what they think they should be.

Try to put a square peg in a round hole, and you may be able to hammer it in, but it will look awkward. It won’t all fit and it will stand out. It may crack and there will be gaps. So just because you get it in there doesn’t mean you were successful in anything other than forcing something that wasn’t supposed to happen. That’s my son, forced into the role of a round peg when he’s definitely a square peg. Is a square peg wrong? Not at all, but if you continually tell someone they need to behave differently than they are, they start to wonder why, and they start to feel badly about themselves. Then you can add self-esteem and confidence issues to the list of pre-existing problems caused by the autism — but these issues are caused by ignorance and not the autism directly.

My goal now is to increase autism awareness so that my son is happy. I want every child with autism to be happy, but I need to start with my own. Awareness month here is a big deal. We are putting out 12 blue light bulbs tonight so our yard is rimmed in blue. I’m dying some of my hair blue tonight — really, a bright dark metallic blue. Awareness ribbons, magnets and pins will be visible and I’ll be continuing to ask random businesses, and strangers, what they’re doing to further awareness, while explaining autism to everyone I can. But I am focusing on high-functioning autism, the children that don’t fit the mold, those that are misunderstood, and those that are falling in the cracks because few know what to do. My goal is to decrease the number of people who don’t know what to do with my son.

My son is my light, my joy, and a blessing to our lives. He is funny, smart, wise beyond his years, and thinks outside of the box. He has a mind for computers and logic that amaze me, and a memory that puts most to shame. His stories are so entertaining, and his lack of a verbal filter means he keeps us on our toes and gets adults thinking outside of the box too. Not a single person who has given him the chance to talk can say that he didn’t impact them. I hear throughout the years, from everyone who has worked with him or talked to him more than a minute or two (which isn’t nearly enough, because if you are uncomfortable around different people, you tend to not give him the chance he deserves, which is seriously your loss) that they love him and they want more time with him. People get him, if they open their minds and allow it to happen. Stop putting kids in a mold, see them for what they are, and accept them. Your lives will improve, you will learn more, and my son will face less discrimination. Win-win.

I’m off to go get the light bulbs ready and see if there’s a blue snack I can send to my son’s class tomorrow. He won’t know the significance of it, but adults might and if nothing else, how many snacks are blue? It’ll be yet another different exposure, and that’s never bad.


Enter your email address to follow this blog and receive notifications of new posts by email.

Join 36 other followers

Twitter Updates