The Formula

Posted on November 18, 2014 by simpleijustdo

More and more, this school year, I am wondering what the heck The Boy is communicating through all of this behavior. My sweet little boy is refusing to do work, refusing to go to class, refusing to go to school… like someone has flipped a switch. When we experience a negative behavior (i.e. when all hell breaks loose), after the initial shock (Who is that demon child and where did he put my son?), I am left to figure. Autism parents are familiar with this. Determine the trigger and try to eliminate or decrease it so you can better manage the fallout, and predict when it might happen again. Except when you cannot for the life of you figure out the trigger. Could it be puberty? That magical ingredient that changes body chemistry and is our current prime suspect? Is it medication that needs tweaking? Is it a virus, which always makes The Boy’s behavior completely wonky? Is it someone at school making fun of him? Is it a teacher? Is it..? Is it..? We are trying to take this thing and try to determine its formula, its ingredients. And it’s a difficult, difficult thing.

Who are you and what have you done with The Boy??

Shared here at Mama Moments Mondays – check it out!

Helpless and Dumb

Posted on November 5, 2014 by simpleijustdo

Whenever I was sick as a child, my mom would say, “I hate it when you’re sick,” and I never truly understood the depth of that until I had my own child. Today, I looked at The Boy and said, “I hate it when you’re upset,” and burst into tears. “Why are you crying, Mom?” he asked.

I cry because I’m helpless and I know nothing. I had to come and pick you up at school today because you wouldn’t go to class, and then tried to escape school. I don’t know why. No one does, and when we ask you, you start talking about your bus driver from last year, and how he must have retired because he doesn’t come to pick you up anymore. You talk about not going back to school until next week, or returning to that other middle school you went to for a quarter last year until I screamed enough to get you into a better one, the one you go to now.

I cry because I don’t understand your motivations, and I just want to make it better and easier for you. Can we clarify the bus rules for you? Let’s make a checklist so you don’t forget your band binder again. How can I make it better? And I get no answer.

I cry because you are my only son, and I can’t see past this very day for you. I hope I can get you on the bus tomorrow, but I don’t know if you will go. I don’t know what will happen then. I don’t even know if I will be able to return to work later today, if you will be able to calm down, if we will be able to come up with a reasonable plan to get you back to school and going to class.

I cry because there are no answers. All of us autism parents just throw stuff onto the wall to see if it sticks every damn day. Some of it sticks, and a whole hell of a lot of it doesn’t and you go back to the drawing board. If I had a dollar for every time I said or thought “I don’t know what to do…”

All I can do is rely on experience, try, try, try, and hope, hope, hope. But in the meantime, I hate it when he’s upset. 😦

A First: Saying No to an Obsession

Posted on August 6, 2014 by simpleijustdo

Obsessions are a part of autism. And most of the time they are at least benign (like Sonic the Hedgehog), if not something we parents wish to encourage towards a future career (like computers). Usually, we tolerate the obsession until we ourselves become experts, learning about every type of car dome headlight that is made on the planet. Sometimes we have to limit the time we talk about cats for our very sanity.

But I have never before had to say no to an obsession.

Several years ago, The Boy had an obsession with toilets. He went through a period where he learned just about every brand of toilet, and would watch YouTube videos of toilets flushing all day if we let him (and yes, there are lots and lots of YouTube videos about toilets, if you didn’t know). And after awhile, as most obsessions do, it petered out, replaced by something else.

And after his visit to his dad’s this spring, The Boy’s obsession with toilets resurfaced, as obsessions sometimes do (especially after infrequent visits with his dad). But this time, he graduated to an obsessive (almost compulsive) desire to experience real live toilets. He would spend hours in the toilet aisle at Lowe’s (if we let him), and at the Habitat for Humanity ReStore. He began to take his iPad into the bathrooms at home and at Grammy’s to videotape them flushing. And then he began to take his iPad into public restrooms, when empty, to videotape them, as well.

He seemed to understand that it was not OK to make videos when other people were in the restroom, but that necessitated our waiting until the coast was clear, which was not always easy. And then the obsession intensified so that he would need to see and/or video every toilet at every stop we made in a day (and if you’ve read the blog at all, you may remember that The Man stops in quite a few convenience stores in a day to refill his diet coke or to pee, the only vice he has).

And then a few weekends ago, we spent $50 to take a ferry ride to a nearby National Park site (The Boy’s idea so he could “visit” the toilets there), which resulted in a meltdown and another ferry ride back within the hour. I didn’t even get to the beach.

I began to plan a reduced amount of time where he would be allowed to do this, which I knew would be painful.

And then we had another incident this past weekend. And we had to just say no more. No more videotaping of toilets in public restrooms. We were in the car a couple of hours from home, so he couldn’t run away, and couldn’t really rage too much. He is a better listener and communicator in the car. He wasn’t happy, and I wasn’t comfortable with the complete elimination, knowing it would be a very difficult transition for him. But he seemed to accept it by the time we arrived home. “I can take pictures with my invisible camera and save them to the cloud,” he said. “Or you could take them with the camera in your mind and just remember them,” I offered. He seemed to like that.

The Man and I were cautiously hopeful.

The next day, the Boy expected to be able to go videotape some bathroom again, and again I told him we weren’t going to do that anymore. He still didn’t like it.

“I guess I’m not interested in that anymore,” he said angrily. And my heart broke a little.

I know his interests are a part of him, and by saying “no more” it is hurting him. But he is a big kid now, taller than me, and people out there are not as patient with tweens as they are with the cute little ones. I just don’t trust that someone won’t call the cops on him for being creepy. We have explained that to The Boy in the simplest terms, and I hope he is starting to understand, but there’s really no way to know.

So far, it hasn’t been a daily battle, but I think it will be tougher on the weekends, when we are out and about. I know we need to try to “replace” this obsession with a new one, too, but that is much easier said than done. So this will be a struggle for us, and we’ll just have to see how it plays out. It’s a first for all of us, and no fun for any of us.

Behavior Really Is Communication

Posted on July 22, 2014 by simpleijustdo

Behavior is Communication. This was one of the tenets of autism I learned early on. I remember sitting in a workshop with my then-husband, who really just didn’t get it, and this was the key piece I walked away with – I already knew it, but the workshop had reinforced it, and I had hoped my then-husband would have an a-ha! moment, but it never came.

The ex has now cancelled on The Boy for his week of visitation next month, and I broke it to The Boy late last week. He had equated this planned trip to his dad’s to the escape plan of the tank fish in Finding Nemo, and would talk about how he was looking forward to seeing whether or not the escape plan would work.

Well it didn’t.

And at first, The Boy seemed OK. “I guess the escape plan didn’t work. I guess we’re stuck in the tank,” he would say. I knew he didn’t really feel like he was stuck here with us, but that the plan fell through.

As the weekend wore on, and we began to witness more teenager-y behavior (refusal to do things we asked, etc.), it took my mom pointing out to me that this behavior was probably coming from the cancellation of plans. And I had a Doh! moment. I should know better, because of that basic rule, BEHAVIOR = COMMUNICATION.

Of course, that explains why he was being such a jerkface this weekend!

It’s still a sore subject, but figuring it out has helped The Man and me gain a little perspective, and retain a little more compassion for him right now. Sometimes it’s hard to be compassionate to someone who is being a jerkface, but The Boy is still just a kid, and a kid who has been cancelled on again by his dad.

“I knew this escape plan wasn’t going to work. Do you remember me telling you that before?”

😦

He’s Baaaack…

Posted on March 18, 2014 by simpleijustdo

I have a sneaking suspicion that the ex and his girlfriend broke up, because he’s decided to remember he has a son of his own. He texted me in the middle of the week, saying he was sorry he was behind on child support, but that he’s been laid off, and would make a payment by the end of the week, oh, and he’s definitely a go for Easter, and could he call Thursday?

Sure, I replied.

Thursday evening rolled around, and another text that said he was still at work, and could he call Friday instead.

Sure, I replied.

He called while we were out to dinner, and I missed it, so I called him back before he could get to The Boy and start making promises that I would have to deal with when they were broken.

He laid out his plans for picking up The Boy for Easter Break, and didn’t ask for too much travel on our end. He went on to talk about us bringing The Boy to Florida in May, because he has a friend who works at Discovery Cove, and could get us in free to every park in Orlando. He suggested The Man and I come, too, and hang out with them for a couple of days if we wanted…

I told him I’d check the school calendar.

When he finally called to talk to The Boy on Saturday, I told him he could talk about Easter Break, but not to mention the other plans until they were more firm.

The unfortunate reality is that even positive contact with his dad has an impact on The Boy. We are now bracing ourselves and warning his teachers, who have never experienced The Boy post-visit-to-dad’s.

And it has already begun. The slightest up-tick in defiance and rigidity, the constant fear of being left behind… All of the old emotions (and negative behaviors) return with a phone call and a promise.

The ex will never understand his own power.

Triggers and Blowups

Posted on November 20, 2013 by simpleijustdo

Last night, The Boy and I sat down to do some social studies homework (it never ends), and like most on the spectrum, he has a hard time with the whole concept of homework: School stuff should be done at school, and home is home. It’s a struggle, but as long as I break up our sessions, reward him, and don’t ask him to do too much at once, he does what I ask, and we are relatively successful. Usually.

At first, I couldn’t even find the answers to the fill in the blank questions. It took a fair amount of digging in the textbook, something at which my boy is not so good. Nor is he patient. “How long is this going to take?” he kept asking.Knowing the assignment was four pages and that this is his last week at his current school, I was overly optimistic about how much we could get done. If the assignment hadn’t been so challenging, we probably wouldn’t have had a problem. But we did.

He began playing with a chip clip on the table, and when I needed him to read from the text to find an answer, he was distracted. I asked him to put it down until we finished five answers, and he refused. I tried to take it away, and all hell broke loose. Screaming, swearing, breathing heavily, skin becoming mottled, and near tears, The Boy was all of a sudden not The Boy.

He became preoccupied with the “swear” which wasn’t really a swear, but he knew he had crossed the line, and was now punishing himself, saying he had to apologize to everyone he had ever sworn in front of, and was throwing quarters across the room (a family joke about owing someone a quarter every time they let a swear word slip in front of him)… I had to get him calm enough to figure out what had triggered this, and get him off the idea that I was mad about the swear word. It was a challenge.

After about a half hour, making him sit with me on the couch, practicing deep breaths together, I was able to get him calm enough for me to understand that the homework was just too much. I told him we would cut it down to one page tonight, which turned out to be 3/4 of a page, but I was amazed that we were able to get anything done after a blowup like this. Progress? Maybe.

As he gets older, his triggers change, and what these blowups (pre-cursors to meltdowns in our case) look like change, as well. I won’t ever stop learning about my kid, oftentimes after the fact. It seems that as long as we concentrate on why the blowup happened, and take the focus off of consequences for “poor” behavior, I am able to learn so much more, and he is able to recover much more easily. Usually.

On Yelling

Posted on October 15, 2013 by simpleijustdo

I follow a few autism-related facebook pages, and on several, the administrators post anonymous questions from followers so that others may offer advice. There was one such posting this morning from a clearly frustrated mother who found herself yelling at her son, and feeling unable to handle his behavior.

Sometimes I yell at myself – ★ spunkinator

I’ve been there, my family has been there, the ex has been there, and The Man has been there. We have all yelled at The Boy for one reason or another. Luckily, there is that voice inside of us that immediately tells us that it was unnecessary and the incorrect thing to do, and we tend to go back, make amends and start over. I think the person who posted the question has that sense of remorse, otherwise she wouldn’t have posted. And I think every person touched by autism can understand her feeling of helplessness.

What has helped me (and this is not to say that I don’t yell anymore, but it’s pretty rare), has been to really try to see the world as The Boy sees it, understand the frustrations he is dealing with, and remember that behavior is communication for our ASD kids. If he starts to fuss about something, or refusing to do something, I immediately try to put myself in his place and review what is really bothering him – many times it’s something sensory, some change to the routine, no physical activity, or the fact that he hasn’t had any time to revel in his obsessions lately. It’s not necessarily whatever he is verbalizing.

And reading books and blogs written by people on the spectrum can provide great insight and spectacular “A-Ha!” moments. It’s amazing how differently you can see your child sometimes after reading something that just clicks.

I think a lot of people get hung up on never quite understanding, and they develop their own sense of what these kids should be. “He should know better.” But I don’t dwell on the “shoulds” – I just keep analyzing my own kid, and his communication, either verbal or behavior, to try to understand him as he is.

Routines, Item Attachment, and Flare-ups

Posted on October 10, 2013 by simpleijustdo

We almost didn’t make it to school this morning.

The Boy had forgotten his (fake) glasses at Grammy’s house last evening, and wanting to head off a last minute meltdown, I told him as soon as he woke up. I told him we could get them later that day, and that would be alright wouldn’t it?… I breathed a sigh of relief when he said OK, but it was premature.

Once he was dressed, and it was time to go, he announced that he wasn’t going to school because he couldn’t go without his glasses.

I cajoled, made deals (and a few threats of consequences), and was finally able to get him out the door, a half-hour late. He wore a pair of reading glasses instead, and I went to Grammy’s, picked up his (fake) glasses, and took them to school for him.

It’s still frustrating, and there are always those moments of indecision – Do I let him stay home? Do I let him come with me to Grammy’s to pick them up? Or do I stick to my guns? What is the goal here? Today, I think I made the right choice. I don’t always, but no one is perfect.

I’m also starting to realize that for whatever reason, the glasses offer comfort to him, and that when he has a “flare-up” like this, it is a form of self-advocacy. He is telling me that he is not as comfortable going to school without them. And one of the best things I ever learned about autism is this: Behavior is communication.

Don’t Live in Fear of the Meltdown

Posted on August 15, 2013 by simpleijustdo

I write this with the disclaimer that it is addressed to myself, as well as everyone else living with autism in their household. I am painfully aware that this is an area of challenge for me, and I write this post with the hope that I will refer to it often to remind myself not to succumb…

We bristle when people tell us that our children are “just spoiled,” and rightfully so. The ex was convinced that my “coddling” of The Boy was his true diagnosis, not autism, and that if we just ~~spanked~~ disciplined him more, he would behave “better”. This post is not to suggest that any of us are too lenient on our children. No one knows our children better than we do, with the exception of the team of people that most of us have, the therapists, teachers and caregivers that help us raise our special, special children.

However…

We also pick our battles. And you have to. If he chooses a pink shirt and orange shorts that are way too small, we may just have to go with it because at least it’s not the pajamas he has worn for the past six days. Refuses to eat vegetables? That’s OK for now, because pizza is better than a diet of ice cubes…

But…

Especially as a single mom, I fell into a bit of complacency. The anticipation of a meltdown would influence my decisions too much to the point that I was bending farther than I should. And it wasn’t until I started dating The Man that this was pointed out to me. At first I was furious, thinking he was telling me how to raise my son. But he wasn’t. He was just pointing out that The Boy really didn’t need to sneak that giant sucker into his room to eat right before dinner, and that it really was my job to call him on it.

Oh… Yeah… I’m the adult. (Duh!)

And I have found that if I am consistent about calling him out on little stuff, he is less likely to get really agitated by it. Last night, The Boy’s iPad time limit (instituted until he “pays back” his half of the repair bill) ran out, and he started to raise his voice when I insisted on taking it from the room. It looked like he was going to blow it, but after some (albeit loud) whining, he accepted it without much further ado.

My suggestions are to avoid complacency and shoot for consistency. All kids crave some structure. The more consistently we provide it, I think the fewer big meltdowns occur from being called on what is actually poor behavior. That’s my theory, anyway.

Now if I can just remember this 24-7…

The Classification of “Meltdown”

Posted on May 8, 2013 by simpleijustdo

Rainbow pencil (Photo credit: @Doug88888)

There is clearly a difference between a tantrum and a meltdown. Tantrums are thrown for effect, while meltdowns are thrown because the ability to communicate something has evaporated, and tolerance levels have been exceeded in some way. But I have noticed my own language lately, in describing behaviors as a “meltdown”, when they aren’t really. With The Boy, I tend to classify all of the behaviors leading up to a meltdown as “having a meltdown”, so that others who do not have living-with experience with autism will understand. Many, many times, we are able to avert the big blowout. In fact, they have been fairly rare, at least in public. But the behaviors beforehand are no picnic either, and require me to be firing on all engines, brain clicking along, coming up with solutions, ideas, and decisions at lightning speed, much like a battlefield medic. It’s really a crisis for both of us.

Wouldn’t it be great if there was some universal way of describing this “ramping up” of anxiety pre-meltdown? Wouldn’t it be great if that became part of the autism awareness and acceptance vernacular? Like one of those smiley face charts at the doctor’s office that they use to help you decide how much pain you are in, so that you can describe it to them accurately?

“Boss, I’m going to be a few minutes late to work, we are at a level orange on the meltdown scale right now, and hope to have the situation back down to a yellow shortly.”

“Honey, I think we need to find our way to an exit. This looks like a green heading into yellow territory.”

“Hello, Mrs. Vandenberg, I just wanted to let you know that we had a pretty rough morning, and got up to hot pink because his favorite shirt wasn’t out of the dryer in time for school.”

Of course, the application would probably vary from person to person, but it would provide a little more information than just, “he’s having a meltdown”.

What’s your opinion? Let us know in the comments