Updates and Upcoming

SPRING IS MY FAVORITE SEASONIt’s almost the end of February, which means it’s almost spring, which means, it’s almost IEP season. And at our next IEP meeting, I have to let the school know what we’ve decided about The Boy’s future – college or no. I’ve since found that isn’t technically accurate, but it may as well be, with all of the extra work The Boy would have to do just to get into college.

Before that time I would like to meet with the high school band director. I sat with The Boy on Tuesday night as his band warmed up for a pre-contest performance, and listened to him play. And that boy can play. I would absolutely hate for him to have to give it up. I also absolutely hate that this district has decided that they can dictate a child’s program and undermine this little thing called an Individualized Education Program

A friend and I have long wanted to meet with the director of special education, and I also think it’s high time we do that, to discuss how high school works here, and how it violates children’s rights. I may also mention a certain band director who has thankfully moved on from my child’s life, but is still negatively affecting those of other kiddos on the spectrum – another friend of mine had to pull her son out of his class because he was being yelled at, as in verbally abused. That’s four kids that I personally know on the spectrum who have been bullied by this guy, that he has attempted to force out of the program, and someone at the district level needs to know.

Before I do all of that, I will have to respond to The Boy’s current educators and see if I can help them connect the dots to try to make it through this school year. I intend to do this without calling another IEP meeting, but via email and a simple suggestion to contact the autism specialist if they are struggling with implementing strategies, and understanding how to help him meet IEP goals.

I sometimes wish I didn’t have to work so that I could have the time to properly manage all of this. And then I think, if I didn’t have to work, I would probably homeschool at this point, and wouldn’t have to!

I Can’t Fix This

“He must have neglected to turn it in.”

This is what The Boy’s language arts special education teacher told me when I let her know I had sent in the reading log for last week. She also said she doesn’t like to go into his backpack because it would be invading his privacy.

While I understand the sentiment, it smacks of ineptitude. That would be like a physical therapist ignoring your issue with your elbow because they didn’t want to ask you to expose it.

She went on to say that he is not completing work in class, which is an IEP goal, because he is spending too much time drawing. His TA (yes, his TA) came up with an incentive program for this, but the teacher claims that because the TA isn’t in her room for her classes, The Boy does not want to participate. And it’s hard because she’s got all the other kids in there.

Well, I’m sorry. Darn it, life is hard, and sometimes you just have to do your job. You can hope and wish and pray that your student with autism will suddenly find his missing executive functioning skills under a desk in the corner, but most people work on them instead. Because that’s what they get paid to do, and that’s what they’re in it for.

Could I call another IEP meeting? Sure. Would it do any good? I think you can cure this as much as you can cure autism itself. I think this is a response email, possibly cc’d to the TA who is the only freaking one at the school with a clue, and maybe we can muddle through the rest of 8th grade.

I hate that my son’s education has come to this. But there are only so many times you can bang your head against a wall. This particular issue is the teacher’s and not The Boy’s. And it’s not my job to fix it.

BANG HEAD HERE

How I Know

The Boy is what I call not-quite-verbal. He can speak, had years of speech therapy which started with teaching him basic words like “running” and “ball” with flash cards. He enjoys words a great deal, and finds puns and double entendres highly entertaining. One of his obsessions is “ugly sounds” in the band class, and when I remind him that reading The Hunger Games is on our schedule for the evening, he says, “Reed!” back to me, with a perfect imitation of the sound of a reed instrument squeaking. He then explains the joke, that “reed” r-e-e-d is not the same as “read” r-e-a-d, and which one did I mean? Haha.

But ask him what he did in school today? Crickets. Not a peep. Ask him where his field trip is on Friday? Not a word. It’s not as if he doesn’t know. He just cannot form the words. And due to his verbosity at school about his favorite topics, those who know little about him or about autism assume a lot.

Sometimes, they can't tell us what hurts. We just have to notice.He also will never tell me he is experiencing pain, which worries this mama. In fourteen years, The Boy has never once complained of a headache, but he’s probably had one. And he definitely will not tell me if his dad’s absence and lack of communication is causing him pain, either. I have always told The Boy that he can call his dad anytime he likes. He has never taken me up on the offer. He has difficulty talking to him on the phone on the rare occasions that his dad calls him because he has difficulty creating conversation, and his dad doesn’t understand the types of questions to ask.

But I can still tell. When getting dressed, he will switch from the t-shirt I chose to the Steelers t-shirt for the day (his dad is a Steelers fan and got him the shirt one Christmas). He will ask me random questions about what his dad’s cats are doing. Little things that let me know that he’s thinking about and missing his dad.

It’s a different type of listening. More of a “noticing,” but it’s a huge skill set we autism parents develop. We use it to notice the ways our kiddos self-advocate and self-calm, so we can help them replicate the strategy if it works. We use it to notice a budding new interest that we can encourage.We use it, as in this case, to notice when they might be feeling a bit low or lonely and need some extra cuddles and attention. Basic parenting, sure, but supercharged.

Get Out of the Way

As The Boy gets older, I fret about what he should be able to do, what he should learn so he can live as independently as possible. The Man and I know that he will be living with us for quite awhile (and to be truthful, I haven’t even considered him moving out to another, more independent situation yet), but we do a lot for him, and we need to stop.

When The Boy was little, he went to a lady’s house for daycare, and she was amazing. She was one of the kindest people I’ve ever met, and the lessons she taught him as a toddler still stick today. I will often find his socks in his shoes, as he was taught to do there at her house.I forget, sometimes, that I can teach those lessons that need to be taught, and they will stick because he is more of a sponge than I give him credit for.

It's not just laundryA couple of years ago, in an attempt to get him to do some chores, I tried to teach him how to fold and put away laundry. I still have him put it away for me (sometimes), but I do most of the folding. The other day, he happened to come into the living room the evening I was folding, and for some reason, The Man had turned Spongebob on – a rare occurrence. The Boy plopped on the couch, and I started handing him socks to match up. He not only matched them up, but balled them up the way I had taught him to do it. No prompting, nothing. He just did it, and with no complaint.

I must, must, must remember to get out of my own way, and provide him with these opportunities to practice and learn, and even allow him to help me a little. He just keeps getting older, darn him, and if I just let go a little, he will surprise me. I just know it.

Ask Them to Put It In Writing

Our local chapter of the Autism Society has a regular monthly “Friends and Fun” party at the rec center of a local church where kiddos on the spectrum and their siblings can come and celebrate their birthdays with other kiddos in a non-judgmental setting. We set up some games like Twister, and there are ping pong tables, and then there are also some more structured games, but no one is forced to play, only encouraged. There are snacks, cupcakes, balloons, and even presents for the birthday kids. For kiddos who attend and are not celebrating a birthday, it’s a chance to get some social interaction on their own terms.

It’s also an opportunity for autism parents to meet and vent about issues their having, seek comfort from those who understand, and even advice. This past weekend, I struck up a conversation with a mom who I have come to respect because of her knowledge of special education law, and her commiseration with the state of our school district when it comes to autism awareness. Over the past couple of months, I have been sharing with her what I’ve found out about the transition to high school, and she is eager to hear because her son is about two years behind The Boy.

I told her that it seems like we have two choices, and that the IEP will not be the driving force behind The Boy’s education, as it should be. I told her that I’m not sure how far I would get fighting the system as it is without involving lawyers and spending money I don’t have.

She shared a tip that worked for her, and I thought I would share it with you, as well.

When her son transitioned from primary to elementary school, they attempted to put him in the resource room for the entire day, even though he had had success at the primary school with the proper supports. She knew he could handle general ed classes with continued support and that the school was making this decision based on staffing. She simply told them to put their rationale for their decision in writing. Quickly, the school changed their tune, and her son was placed in general ed classes with supports.

Why?

Because when they put something in writing, they have to be able to defend it legally and they couldn’t. This tip is brilliant. It may not work as well for big issues, but for the smaller ones, it most definitely will, especially when you are dealing with personnel who are not all that familiar with the law, but know enough that putting things in writing could potentially come back to bite them in the ass.

Add this tip to your bag of tricks and pass it on. It’s simple, but potentially powerful.

ed law 101

My Valentine to Those Who Get It

I’m so grateful for staff who get it.

Let’s face it. People don’t go into special education for the money. Whether a teacher, a TA, even a special education administrator… they all go into it for the right reasons. At least I hope so, and intuition and experience tell me this must be true. But just like any profession, there are those who are just naturally meant to do it, and there are those who lack some skills and somehow never pick them up.

As a parent of someone with an IEP, I’ve encountered all kinds of educators, and luckily almost all of them had their hearts in the right place. That I can work with. And I’ve learned to work with those who call in a panic because they don’t know what to do, or those who call because my son has a temperature… of 99 degrees. Or those who send me multiple emails, giving me the play-by-play of the meltdown they are trying to handle at school, all with the undertone of please-come-pick-him-up…

My Valentine to Those Who Get ItBut I am especially grateful for those that just do it, as if they were put on this planet for that express purpose. They do it with compassion and insight, with fortitude and humor. The one who, in the midst of a less than stellar day, emails me to let me know that even then, she notices improvement. The one who, after a string of days of heartbreaking behavior, simply says, “Tomorrow will be a better day,” and I know she believes it. The one who always texts me after the meltdown to let me know it’s all ok.

This is my valentine to you folks. The ones who make me a better parent, and make my child a better human being for having been cared for by you. Words cannot express how much I love you all. Keep on rockin’ your natural talents and making the Earth a better place to live. ‚̧

The Two Hour Delay

You might be an autism parent if...The effects of a two hour delay last all day longOur school year has been riddled with two hour delays. And although my recent posts have been fairly centered on my (adverse) reaction to these, they do negatively affect The Boy, as well. As always, if he can expect it, and be prepped for it, the result is mitigated. But if it comes as a surprise, and is combined with other students being absent, teachers being late… It’s not very pretty, and this was the case this past Monday.

I understand why the district does it. They try very hard to avoid cancelling school because there is no such thing as a make up day in the South. They could very easily build in some days, as this is the second year in a row that we have had a dearth of these routine-upsetters, but that would take forethought and planning… and I digress. The problem is that our district encompasses many long miles of coastline, the east end of which is very susceptible to flooding during heavy rains. There is basically one road going in and out of town, and there is one very small school there. But if those sixteen kids can’t go to school, then the rest of the district has to close too. Even if there’s a chance they may not be able to make it, or the wind will be too strong, or there just may be water over the road… I am exaggerating, but only slightly.

The district needs to take a hard look at their policies. Two hour delays may not seem like much, but it only takes three to add up to a full day of instruction lost. Couple that with the detrimental effect on kids like The Boy (and neurotypical parents like me), and we are starting to have a serious problem.

Monday evening, The Boy asked when the next two hour delay would be. That’s not something I can predict, considering the last two were for no apparent reason. At that time, I pulled up my Weather Channel app, which said no chance of rain until next Tuesday. Now, as weather forecasts are wont to do, this Friday looks like rain and a chance of snow in the AM. If that forecast remains, you can bet there will be a delay. And now our job is to prep for that possibility…

Rigidity Again, but Better

A few weeks ago, I wrote about having my own sort of meltdown when we had a two-hour delay for school for no apparent reason. I resolved at that time not to get stuck again, and the next time this happened, I would stick to my normal routine of getting up at 6am to get myself ready.

It happened again yesterday morning, and I think the fact that the delay was utterly ridiculous added fuel to my fire. But that is another blog post… I did what I had resolved to do, and woke up at 6am, got myself ready. I still had a little bit of a time crunch – I’m really not sure how – but the process of getting everyone ready was much smoother.

BETTERMORNINGSAt one point, I was putting together The Boy’s lunch, and The Man stood in the kitchen, a little warily, I suppose, and asked if there was anything he could do. I told him no. And I realized I needed to have a yes answer to that question. I need to allow him to help me when it gets down to it. I was a single mom for so long that I get into that mode sometimes, that I-am-fierce-I-can-do-it-all-on-my-own-and-no-one-can-stop-me mode. But I’m not all on my own. And it’s OK to ask for help. It might take a little training for everyone involved, but it would be better for everyone involved if everything didn’t fall on me in the morning.

And another big part of that is that The Boy can do some, too. So much of what I do for him is just routine left over from when he was eight years old. Now he is fourteen, and much more capable of handling responsibilities. I need to step back and let him.

So, I guess it’s time for a morning training plan. I’ll get that on my list of things to do, and I’ll get back to you and let you know how it goes. ūüėČ

A Couple Ways to save for next Christmas

This year, we didn’t have a whole lotta extra funds for gifts, and I thought I’d let you in on a secret – I got a couple of gifts for free this year.

How?

  Two apps. The first is the Walmart Savings Catcher. If you go to Walmart with any regularity, there’s no reason not to use this app. It is quite simple: You scan your receipt when you’re done shopping. If the app finds that a competitor has a cheaper price on pretty much anything on your receipt, it will credit you with the difference. Most of the time, it’s 50 cents on the whole bill, but every once in awhile, it’ll be a couple of bucks. And over a year, that adds up. You can redeem for a gift certificate whenever you’re ready, or use it towards your grocery bill or anything you buy in the store. Easy peasy.

The second is Shopkick. This one works in various stores, and will notify you when you are near a participating store if you let it. The stores I get credit for are mostly Walmart and Best Buy (because we do not have many of the others in our area), but there are many more stores for which you can get credit, so you should check it out. Again, you get “kicks” just for visiting the store sometimes, and if you have some time to kill, you can get kicks for scanning certain items. When you are ready (and have enough kicks to be eligible), you can redeem them for gift cards, movie tickets, gasoline… lots of different things! Some are a pretty good deal, others are not, but you’re getting something for doing something you would do anyway, so in my book, anything is a good deal. I actually got two gifts (one from restaurant.com for $100, and one from GameStop for $25) from this app this year, but I think I’ve been accumulating kicks for longer than I’ve been using the Walmart app.

In any case, I got three free gifts for zero dollars, and it helped a bunch. If you’re the type to plan ahead, check out these apps now, and you just might be able to save some cash next year. (I’m not affiliated with either of these apps, just glad I was able to save by using them.)

Presumption of Competence

Hands down, the biggest lesson I have learned since moving my son to another school, another school district, another state has been that one should never presume competence with anyone who deals with your child.

¬†Unfortunately, classroom teachers know very little about IEPs and special education law.¬† It just isn’t required of them in teacher prep programming, and if it is, there’s very little of substance that is taught. Many times, when a teacher is in your child’s IEP meeting, they are following the lead of the special education teacher and the administrators. If they do any modifying of assignments, or make any accommodations for your child, it’s usually under the direction of a special education teacher (and many don’t do it at all, and leave this entirely to the special education teachers and even the TAs). This is not the case with all general education classroom teachers by any means, but if you presume competence about special education matters, you will most likely be unhappily surprised.

The same can be said of administrators. Those that know about special education law are in a shocking minority. I worked for and received a degree in school administration, and only a portion of our one law class covered special education law. Administrators rely heavily on their special education teachers to know the law, as well.

Why is this important? When you head into that IEP room, you are relying on the expertise of one person, your child’s special education teacher, to ensure that what is happening that day is legal, and that you’re child’s rights are being met. And if that person isn’t quite up to snuff? Then what?

It is imperative that you learn about what should be happening in that IEP meeting, in your child’s classrooms, in that whole district. Get your hands on anything from Wrightslaw and read it until you know it. Otherwise, your IEP meeting could be “run” by and administrator who wants to reduce your child’s social skills time, and have the TA take him out into the school to practice unlearned skills because that’s what she thinks should happen. (true story…)

With the proper knowledge behind you, you can respond, “But that’s not how this works. That’s not how any of this works.”