Mom’s Voice

Posted on November 20, 2015 by simpleijustdo

Got a text this morning from The Boy’s TA: “He’s having a rough morning and wondered if he could call you. Are you available?” I said sure and within a few minutes, was talking to him on the phone.

It was a weird night and morning. We had flash flooding last night so I had to leave my car at Grammy’s which meant The Man had to drive me back this morning to retrieve my car. And then he had to drive The Boy to school which had a two-hour delay. Obviously enough to trigger a rough morning, although he seemed in good spirits before school.

“I should’ve just gone to Grammy’s with you this morning. I’m not feeling too good.”

“Not feeling good, like with your emotions or your body?”

“My body.”

“Well you kind of have a shorter day today, and I do too. So try to stick it out and I will meet you at Grammy’s after school, ok?”

“Ok.”

His TA said he was much more responsive after the phone call and had started getting his things together to go to class. For some reason he seems to just need to hear my voice sometimes to reassure those anxieties that are keeping him from doing what needs to be done. We have meds now, that are as-needed (we haven’t needed them yet) for this type of thing. But I’m happy that talking to me seems to do the trick for now. Sometimes I just need to talk to my mom too.

Yet Another Schedule Change

Posted on October 27, 2015 by simpleijustdo

It seems that several times a year since The Boy has been in middle school, there has been a sudden inexplicable schedule change. Sometimes it’s the same teacher, same class, but he has been moved to a different hour. Sometimes, the teacher changes, and sometimes, everything changes at once.

I’m not sure why the school thinks this is appropriate, especially for students who are in the special education program, and whose anxiety is triggered by any small amount of change, let alone massive schedule changes. And the changes in this instance affect only special education students in seventh and eighth grade – the very populations for whom you should be striving for continuity!

The principal was explaining to me when we met that there were few on staff who could “get through” to The Boy, explaining that his TA was excellent, and was the only one who could do this consistently. It seems counter-intuitive then, to remove a teacher from his schedule entirely, one with whom he has built a relationship, when up until now she has taught him math and social skills. How does a child form relationships with adults when he doesn’t know how long he will see them on a regular basis?

It may seem small in the whole scheme of things, but moves like this make me question if the decision makers know anything at all about students with special needs, and especially those with autism.

New, New, New

Posted on September 9, 2015 by simpleijustdo

I’ve written recently about how many changes The Boy is handling at school (and at home) and how well he is doing with all of it. His school schedule has been sorted, relatively, and his TA is growing into her role as the point of contact at the school.

I, too, have been handling some big change. I left my job and got a new one, and even though it presents new challenges due to being a little less than full time, I think it quite possibly saved my sanity. I look forward to going to work again, and learning new tasks with a new crew of people who are not constantly gossiping, backstabbing, and sabotaging. Even though I work with people much younger than me now, the maturity level is infinitely higher than the workplace I left.

We also closed on the sale of our house and moved into our temporary home while we build on our lot. The house was left fairly dirty, and the walls were a goldenrod color (seriously??), so we had to clean and paint before unpacking completely, and I was about ready to tear my hair out, but it’s been about a week, and we are finally settling in. I love being on this side of town, and we are so close to The Boy’s school, that The Man is now taking him in the morning, alleviating some of our morning anxieties. The Boy loves it because he gets to sleep in later (ha!).

And everything kind of happened at once. Autism families recognize this as having great potential for disaster, but (knock on wood) we are all adjusting quite well, and much that is positive has come from this round of changes. I guess change is inevitable, but sometimes we get scared. Life is too short to be miserable and afraid, though, and taking risks can result in positive things. It’s good to be reminded of that.

Being “On Call”

Posted on June 16, 2015 by simpleijustdo

I’ve seen reports from studies that indicate that those of us who parent a child on the spectrum often suffer from similar symptoms as those with Post Traumatic Stress Disorder, and does anyone really wonder why? We are in a constant state of alert, listening and watching for any signs of anxiety and stress that are in a state of escalation. As some of my fellow bloggers have written, we know our kiddos littlest sounds and know every bit of that language.

We were at the convenience store the other day, and we stop so often that the woman behind the counter, who really means well and tries to understand, takes it as a personal accomplishment if she can get The Boy to say hello. He happened to begin stimming and galloping toward the door, and she said, “Oh no! What’s wrong!” I calmly explained that that was his “happy noise,” and we finished our purchase and left. I realized that most people wouldn’t know that. Most people also wouldn’t know that the “errr” that has bit of an edge to it and comes quickly after a question is asked is a sign of irritation and disagreement that could escalate, or that pounding either on the floor or any hard surface often is a precursor to pacing, at the very least, and a meltdown in the worst of times.

Listening, watching, and being “on call” for these little noises and behaviors 24 hours a day, 7 days a week can be exhausting, and why I so appreciate our weekly date night. For one night, I can stop listening and just relax.

It’s also another reason my current job just isn’t working for me. Even though I don’t get paid much, I am expected to answer texts, emails and phone calls even when I am not at work. Do I have to? No, but the expectation is there (and believe me, I’d be in the dog house at work for quite awhile if I just ignored it), which means I can’t even have a weekend where I’m not jumping at every notification from my phone.

A big reason I left teaching was because it took too much from me, and I didn’t have enough left for The Boy when I got home. Now, it seems I have jumped right from the frying pan into the fire. I’d love to only have The Boy to be concerned with, and not other people’s ridiculous concerns about lunchmeat and plastic leis. The Boys crises I have come to expect, know, and understand. Anyone else’s seem assinine in comparison, and it’s that that is getting old.

Escalating the Situation at 30,000 Feet

Posted on May 13, 2015 by simpleijustdo

If autism is on your radar, you are now aware of the recent forced deplaning of a family of a girl with autism by a United Airlines flight crew.

From the reports I have heard, including the mother’s own statements, it didn’t need to go down like that. The way it was handled increased the stigma of those on the spectrum, and created fear where there wasn’t any previously.

I think Mom, already in high-anxiety-panic mode, and trying to avert a meltdown tried to get some help, and used a poorly phrased warning to encourage the unhelpful and apparently untrained flight staff to be proactive. Unfortunately, it may have sounded like a threat, and anyone who flies with any regularity knows that any possible threats are “handled” immediately, with questions only asked after the fact.

And let’s not even go there about her being unprepared. Autism moms are not machines, and there are times when we are caught unawares by our kiddos. It seems that she did the best she could with what she had at hand. And asked for some warmed up rice.

I think the flight staff who is trained in how to de-escalate situations utterly failed in this instance. Maybe Mom came off as “that” mom, the demanding one, and they responded with what many of us in the service industry do when customers start to get snippy and demanding. We slip into, “I’m sorry. That’s our policy,” because we can, and we take a secret glee in being unable to help someone who is so clearly trying to abuse the system. But they failed to recognize that this was not an unhappy and demanding customer, this was a mom making a plea for the sake of her daughter and the comfort of the other passengers. They failed to listen when she said her daughter was autistic. They failed to do their jobs and do what they could to diffuse the situation.

They brought her the rice and probably immediately went to the captain, reporting a threatening passenger because they could, and because that would teach her to be demanding and make threats on a plane.

And the captain, trusting his staff, made the call.

But even he failed to do his job and investigate any further before making that call.

The flight staff failed all of their customers. They failed to listen, they failed to be compassionate human beings, they failed to diffuse the situation. But more than that, they violated this young person’s rights.

So my personal take is that yes, this flight crew needs training about passengers with special needs, as well as training in disability rights. (Many flight crews do – I can tell you stories about the many, many flights I’ve taken with The Boy by myself.) But they also need to go back to square one and be retrained about their primary job in that airplane – de-escalating any potential situation.

Some Rough Days

Posted on April 30, 2015 by simpleijustdo

The Boy has been having some rough days at school this week. Lots of talk about people being absent from school, and students who have “left” school and may never come back. None of it is true, but he has emotional reactions to these “events” and we are left to try to figure out what is at the heart of it. Add that to lots of perseveration on his favorite topics, and anyone can see he’s anxious about something.

His teacher emailed me the other day commenting that he seems to let one small correction bother him, and then add real infractions to ensure he gets “punished” or sent home, or some judgement that seems worthy in his mind. I let her know that this is a common occurrence at home, as well. Yesterday, I could tell she was frustrated because her email started with “Another bad morning today…” at 10:07am. Rather than respond, I let it ride. She’s young, and doesn’t seem to have the patience the job requires all the time. Maybe she just needed to vent. I wanted to remind her of Rule Number 1: Behavior = Communication, but I didn’t. People don’t like it when you tell them how to do their jobs.

And sometimes he’s just crabby… Kiddos on the spectrum are allowed to have emotions, too.

I’m not sure what’s going on with The Boy, but he seemed much happier yesterday afternoon than he has been in about a week. I hope that whatever has triggered this latest round of rough days has resolved itself, but only time will tell. The Boy and I did talk yesterday evening, and I got the sense that we had turned a corner.

Sometimes we figure it out, and sometimes we let it ride and walk on eggshells for a bit. As our very favorite teacher always used to say, “Tomorrow’s another day.”

Book Club Discussion: The Reason I Jump, “Never-Ending Summer” Part II

Posted on March 18, 2015 by simpleijustdo

I’m continuing the discussion here today because The Reason I Jump is an important book. Naoki Hagashida, at age 13, answered questions about autism from his viewpoint, and while his experiences are not the same as probably anyone else’s on the spectrum, hi reason s thoughts provide insight, and provoke thought, neither of which can be bad for those of us who desperately want a glimpse into the minds of our children.

Question 32 asks about what those with autism see first when they look at something. Naoki reinforces what I have heard in many places, that those on the spectrum see the trees first, and then the forest; the details before the whole. He also says they tend to “drown” in the particularly striking characteristics of those parts, and it tends to be harder to see anything else. If someone you love is on the spectrum, you will have, no doubt, experienced the attention to detail. The Boy is always drawing my attention to some small part that I never would have noticed without his help.

Question 33 asks about appropriate clothing, and why this can be a struggle for those in the spectrum. Naoki says they know and understand why we wear the things we wear, but that they “forget” what is appropriate, and how to make themselves more comfortable. He also explains that those who choose to wear the same thing each day (we have had our battles with this, for sure!) feel like their clothes are an “extension of our bodies,” and a guard against changing situations.

Question 34 asks about perception of time. Naoki says, “the fact that we can’t actually feel it makes us nervous,” and this makes perfect sense to me. Timers help many on the spectrum have a sense of passing time, especially those that are visual in nature. And because the future is uncertain, it is a cause for a great deal of anxiety. This is one of those answers in this book that just “clicked” for me, a true “A-ha!” moment.

Again, this book is a source of inspiration and wonder for me, and may be the closest I’ll ever get to reading The Boy’s own mind. Not every person on the spectrum is the same, but these answers are food for a great deal of thought, and foster greater understanding and patience between me and my son. I highly recommend this book.

Behavior Analysis for Dummies

Posted on February 18, 2015 by simpleijustdo

I opened yesterday’s post with a series of oft-asked questions of parents of kiddos on the spectrum, the biggest of which I suspect is “Why in the hell is he doing that?”

There’s a lot of guilt one feels as a parent to a kiddo on the spectrum. After the meltdown, or public incident, or whatever the negative behavior that just occurred was, we often think, “Was that my fault? Did I do something wrong that caused that?” While feelings of guilt are rarely productive (although feelings are feelings and we can’t control them, really), this questions is a good starting point for a little behavior analysis.

You see, most autism parents already do this naturally, but may not know it had a name.

When your kiddo starts to have a problem at school, the IEP team may suggest a functional behavior assessment. This is where someone (probably with a lot of credentials) will come in to observe your child over several days, and collect data about his/her schedule and routines, and more specifically, exactly what happens before the negative behavior occurs. The reason they do this is to figure out the “trigger” for the negative behavior, so that we can better understand what the child is attempting to communicate through the negative behavior, and then plan strategies to avoid or minimize the trigger so that the negative behavior decreases, or plan strategies for how the kiddo can cope with a trigger that cannot be reduced or avoided.

Let’s say I get a phone call that The Boy is repeatedly attempting to escape from science class (yep, this happened in real life). A functional behavior assessment would serve to identify if this is occurring at a consistent time, and what the cause might be – is it another child with lots of body spray sitting next to him? Is it the brightness or noise of the projector that is turned on next to his seat at the beginning of class each day? Does he have to pee? Does he have anxiety about being late to his next class? Does he feel like he is missing something important elsewhere in the building? Is he frustrated because he doesn’t understand the material? Is there too much handwriting so he is falling behind? Through observation, they can determine what the constant variable is whenever he escapes, and then come up with a plan (move the projector, move his seat, allow him to use a study buddy or word processor to take notes, have a talk with the teacher of his next class about being welcoming and not marking him late, or allow him to use the restroom when he needs to, rather than at passing time). Strategies often include the use of motivators and rewards, as well, to give your kiddo positive reinforcement to keep up the good work. For instance, if The Boy uses the strategy put in place, and stopped escaping from science, he could earn some extra iPad time in social skills class.

You see, we autism parents often do the same thing at home. It’s how I know to expect some hyperactivity after we have Goldfish, especially the multicolored kind – I discovered that through careful observation of my own. The triggers for negative behavior I mentioned yesterday came from careful observation of my own, as well.

So if you are ever ready to throw your hands up and scream “WHY??”, take a deep breath, grab a notebook, and start observing. You already do this fancy thing called Behavior Analysis, and no one knows your kid better than you. You are no “dummy”. It may take days, weeks, or months, but you’ll get to the bottom of it. You got this. 😉

We Are Destroying Our Children

Posted on December 18, 2014 by simpleijustdo

On the news last night, they featured a music program in a California school system that was funded by a grant because there wasn’t any money in the school budget for it. This is not new, this happens all the time, but while watching this program I began to cry. Not like, “Oh, that’s so sweet, and isn’t that great for those kids.” No, this was different. These tears were more like, “This is completely and utterly unacceptable that our schools cannot afford arts programs.”

Do you know where the money is going? It’s going to Pearson, and companies like Pearson who charge for their testing programs, for their test prep materials, even for their “professional development” programs – “experts” that they have chosen to send to schools willing to pay enough for the wisdom on… you guessed it, how to get the kids to pass the test. How to teach more, faster. How to determine what not to teach, so that you can teach the really important stuff – you know, the stuff that’s on the test. How to get kindergartners to sit still long enough to take a standardized test. Test taking strategies to teach to the kids to increase their odds of getting a correct answer… on the test.

Let me be clear – testing is not education. But our kids and our teachers spend so much time on testing, there is very little time left for actual teaching and learning.

And in the meantime, we wonder why the rates of kids with anxiety have gone through the roof. We wonder why kids are so mean to each other. We wonder why our kids get addicted to video games, and their phones, and technology in general. And I hate to say it, but in ten years or so, we’re going to be shocked at the rise in suicides and mental health issues in our youth.

They don’t know how to play anymore because they don’t have time. They don’t have hobbies anymore because they don’t have time. They don’t find joy in music or art because it’s not in their school day anymore, and you guessed it – they don’t have time after school.

They have hours – HOURS! of homework. Even in Kindergarten. They have shortened recess because the class didn’t get everything done. They have silent lunch periods where they have to sit boy-girl, boy-girl so that they do not socialize and cause “trouble.” They are not allowed to have a real vacation – some teacher will assign a project, because kids will just get bored over break, right? Why not use that time to get some more standards in?

I cried at that news story out of sheer rage and helplessness. I left education in large part because it was heading in a very wrong direction, and it is only accelerating toward that really bad place. And it will have devastating, crippling effects on this generation of school kids that can only “socialize” and escape via technology.

What do we do? I do what I can. When my kid’s teacher assigns homework over break, I tell him it may not get done, and I might tell a little white lie about why. My kid deserves a break, and he will get it if I have anything to say about it. When a school in my district enacts these stupid policies about recess and lunch (and yes, those are real policies in place in an elementary school in my district), I will write letters to principals, superintendents, and school boards. And I will speak loudly to anyone who will listen about testing, and what it is doing to our kids and our educational system.

I do what I can. It may not be much, but it’s better than crying at the TV.

Planners Who Need Planners

Posted on September 16, 2014 by simpleijustdo

I succumbed.

A co-worker introduced me to the Erin Condren Life Planner in July. Suddenly I remembered my undergrad days when a planner was my lifeblood. I couldn’t function without it, and if someone had ever taken it or I had misplaced it, my world would come to a screeching halt. As I read reviews and watched the plethora of YouTube posts (it seemed everyone who had ever purchased one had also either done a blog post or a video with a 20-minute “walkthrough”), I suffered from sticker shock, but also a growing need to have one. How had I gone so long without a planner? I asked myself over and over again. I had never quite gotten the hang of the digital organization I so wanted to make work: Evernote, SpringPad, even Notes and Reminders on the iPhone just hadn’t quite cut it. And I thought about the nights where I can’t sleep because my mind is racing with to-dos and ideas, notes and projects, blog posts and emails I need to write. When those nights pop up, the only, ONLY way to calm my fevered brain is to get up with a pen and a pad of paper and just write everything down. Good old pen to paper.

I could get my money managed more effectively, and keep track of expenses, I thought.

I could organize my blogging calendar, I thought.

I could have all of The Boy’s school and Autism Society events in one place, I thought.

I could even put events for work in there so I always know what’s going on and when, I thought.

I could include a daily to-do list, I thought.

I could keep our evenings on track between homework and other household chores, I thought.

In the end, I convinced myself to bite the bullet, and give it a shot. In the whole scheme of things, if it didn’t work, the cost was not that prohibitive. I ordered my planner and waited about 4 weeks for it to arrive.

When it came, I wasn’t sure what to do with it, and again, watched videos and read blog posts on the most effective way to use the planner. Come to find out, most people’s posts were about how pretty they could make the thing with washi tape and stickers, without any real substance on how to use it. So I turned to the notes section and made a list of all the things I wanted to keep track of, and began to form my own ideas of just how I would keep track of all of the stuff I mentioned above.

It’s been about two weeks, and it is being used, multiple times a day. Not only do I plan, but I record expenses (usually first on a sticky note, and if I have time later, with the “proper” label that I have devised), and other things that have happened.

But the biggest A-Ha of all is that by having everything recorded, I don’t remind myself six times a day about that one thing I want to remember. I have a go-to spot for important papers. I know where stuff is. And all of these things allow me to 1) relax more, and 2) be more creative. I have time to think about (and jot down) ideas for blog posts, and even outline my dreams and plans for my own nonprofit which I hope to start someday.

So I guess this is my own obligatory Erin Condren Life Planner blog post. And I’m not trying to sell you on anything – it’s not for everyone. But I am glad that I have gone back to paper, because it’s actually allowing my mind to unburden itself of all the small stuff so I have more time to think about the big stuff.