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.

Recently, our school told us that BB was behaving oddly. Blurting out silly answers, being goofy and appearing to try these new tactics in order to fit in. I attended a class with him and watched, and sure enough, he was not being the BB I know from home. On the way home, after he vented on how he was missing his computer time, I asked him why he felt he needed to do that. A sad discussion followed.

Mom, I do it because, well, remember back home in CA? I was picked on there. Teased. Laughed at. No one did anything. People laughed at my hats and my glasses and I learned that the only way to not get teased was to not be myself. So now that I’m here, I’m going to be what doesn’t get me laughed at.

Sniff.

I understood, but assured him that it was fine to be himself. Wear what you want. Have your own style. Speak like BB, not ‘the cool kid.’ It seemed to work.

Fast-forward to yesterday. He’d decided to wear a cape to school, one from a local gaming place where you get in costume. Kids his age are in there all the time, wearing the cape. I realized it was a stretch, a risk, and that someone might tease, but I assured him that if he was going to do it, be prepared to ignore it. (And to realize that most kids who laugh at it probably do so because they’ve not been there and some wish they did. Let’s be real, these are kids we’re talking about and I know adults that have teased me about my obsession with Nascar and then reveal to me later they just wish they could attend as often as we did.)

Anyway, I picked him up amongst a flurry of phonecalls from various school staff. Yes, the kids laughed at his cape. No, they weren’t stopped. Yes, he was embarrassed. No, it wasn’t against dress code. Yes, they band-aided the problem by making him put it away instead of using it as an educational opportunity. The day got worse from there, and ended with him getting kicked in a private place by an unhappy classmate at the end of the day. Had that been BB, we’d have received a phonecall and it would have been taken uber-seriously; the nurse was very involved, and really good about it all, but I’d best get confirmation that the child was dealt with. They’re all over BB about ‘dress code violation’ and every other little thing, I expect them to be fair. They appear to be, but I still want proof. I’m still mom, after all.

So was being true to himself successful? Not in this case, sad as it may be. However, kids and adults have to learn that you are judged by your attire, right or wrong. If I went shopping today in my Aeropostale Christmas jammy pants and a knee-length purple tiger print hoody (both of which I own, btw, don’t hate) I’d get some stares, too. Some immature adults would probably audibly snicker. (I live in the south, where holey clothes and white t-shirts with no bra are acceptable, but there’s still a level at which you’ll get laughed at…it’s just a level that’s impossible to explain unless you lived here. I do promise you though, I do not leave the house in anywhere an outfit such as anything described above.) He does need to realize that there are some things you just need to watch out for, but it’s a hard thing to teach an autistic child that you can be yourself, have your true personality, but immaterial things like clothing and hats will be judged. And quite honestly, not sure I get it either, with all the “beauty’s on the inside” garbage that’s spewed all over the airwaves and magazines with thin beautiful people on the covers yet judgment happens 24/7 everywhere. For a literal child, it’s a minefield to navigate.

He’s at school today. Didn’t want to go, he was embarrassed yesterday and unhappy that he had to take off his favorite shirt for the class photo (still haven’t gotten an answer as to why a plaid flannel shirt on a cold day was unacceptable) but I’m hoping he has a better day. Sometimes people just need to lay off. Focus on the important things. Don’t nitpick. If he’s already been asked to remove a cape, drop it, let it be done. Don’t haul him into an office for more of a reason, especially a questionable one, and if he has to go to the bathroom during reading, let the poor kid go. You can’t fight every battle, and if all your battles are tiny ones, the real, true big issues are going to be lost because you can’t get through.

There are days that homeschooling is more and more appealing. Do I want to do it? No, but ridiculous attendance laws forcing a medically disabled child (he also has migraines) to go to school despite having a doctor’s note saying he is on medication and has this diagnosis, are harassment at best. Spending so much time daily trying to fix problems created by going to school, I could teach him in that time. Again, do I want to? No. Is it a last-resort? Definitely, but I’m not going to count it out if we can’t find a way for him to be happy while still being productively educated. I like his teacher, and I like his school, but school isn’t life, it’s just one part of it, and if school puts him in a bad mood, everything and everyone around him is affected.

Next blog entry I’ll update on the neurology appointment. New prescriptions, new headache diary and a list of things to avoid until a foll0w-up appointment to see if it works. Wish us luck.

I had an IEP yesterday afternoon. Lately, these IEPs have been pretty standard — we know what’s going to be discussed, we laugh a little, we agree on further services, sign the attendance sheet, and leave with the IEP paperwork to review once more together, at home, before we sign. Pretty simple, especially given that our school is up-front and offers services without hassle. Dh couldn’t go with me, and I wasn’ t worried; I figured I’d be in/out in less than an hour and we’d go on as usual.

Just when you least expect it….wham, the punch to the stomach.

First, the teacher came in to meet me early. I like the teacher, she’s good for him, and I trust her, so when she laid out several issues he’d had yesterday, I believed her. Then she started talking about Tuesday…then Monday. Then another teacher came in and added to it. Then the special ed. director/teacher concurred as she’d seen it. They were very nice about it all, and their approach was fine. It was just that the information, the surprise of it, was a bit…overwhelming?

I know my son has social and behavioral issues. I love him to pieces, and we work daily to fix things and help him improve and learn how to be independent and function in the world, but when you hear there are more issues, or things are worse, it’s still difficult to hear. That’s when I got butterflies and started to do the smile and nod. It wasn’t a ‘how funny!’ smile, but a ‘yes, I’m listening, thanks for sharing’ kind of smile. The kind of smile that signifies I’m holding together just fine, and am rolling with the punches. Inside, I’m sighing and wondering what the heck just happened.

The questions came, and I didn’t have any good answers: had there been a recent medication change? (No, he’s on no meds.) Had there been a dietary change? (No, we eat primarily homemade healthy food, same as always.) Had we noticed any change? (Yes, we’d noticed a few weeks ago that he was more active, his attention span was shorter and he was having more mood swings and control issues.)

While I already knew he was hyperactive — ADHD often goes hand-in-hand with autism — and I knew he had social issues, to hear that he’s now acting out in order to fit in, that he’s trying harder to manipulate situations in an attempt to control his environment (not necessarily to be devious), and that he’s showing lack of focus, lots of fidgeting and difficulty getting and staying on task, well, it was a lot to hear.

New and increased services are in place, and we’re working with the school to be sure we’re consistent and employing the same tactics and strategies at home. Bigger picture, we’re revamping his diet, which is a real challenge as he already eats pretty darn healthy. We’re working on solving his intestinal issue, trying another round of anti-yeast protocol, and seeing what we can do to decrease his level of activity as well as eliminate his headaches…all without medication.

Not sure where to start, but away we goooooooooooo………..

My son’s got autism. He is extremely smart, is verbal and can speak clearly, and is in a regular education class, but he also can’t tolerate certain textures in his foods, doesn’t like eye contact, flaps his fingers, can’t deal with loud sounds or sudden changes in his schedule, lacks social skills, has personal space issues and a strong need for sameness and repetition, as well as difficulty monitoring his moods and anger, can’t stand tags in his clothes or seams in his socks, has to have everything a certain way or he could flip out, and sensory issues ebb and flow. Yet, because he can speak and is so smart, the autism isn’t the first thing you see, or even the second. As a result, some people that don’t live with us — those that haven’t seen him lick everything in sight, flip light switches on/off, line up chairs in waiting rooms, drop to the ground and strip, run away with no fear, meltdown from rage that fades into apathy — don’t get our concerns. They don’t understand why we push so hard for services in school, why we keep things on an even keel no matter what else, or why we treat him any different. Well, uhm, he is different, and the reason you can’t always tell it at first glance is because of all that we’ve done for all these years.

There was a couple of years early on that we barely left the house, and if we did, it was rarely as a family, so few people aside from our closest and most supportive friends saw the ordeals. We could show videos of the worst of the worst, pictures of the vacant stare, or reports from the nine diagnosing doctors and double-digit therapists and other professionals who worked with him. But why should we have to?

What do you do when you run into people who insist on him just being like everyone else, as though better discipline or a spanking or taking away privileges/possessions could just fix it? What do you do with those people who feel like you just need to have it pointed out that he’s not ‘that bad,’ or that if you just throw him out there and let him learn, he’ll do just fine.

Or do we really need to do anything at all? Is it their problem, or something we need to work on?

What are your thoughts?


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