Friday, October 30, 2015

Our New Normal

Our new normal at school is to not expect the normal.

Today was Evan's school Halloween celebration, which includes a costume parade and classroom party. The kids go outside and parade past all the parents...this went terribly for Evan last year, so I was not surprised that he did not want to participate this year. Instead he stayed inside (without a costume on) and, thanks to the genius idea of his Aide, he tallied different types of costumes that he saw as the kids all paraded past him.

Here was his tally:

The classroom party had more parents that I had expected, but Evan seemed to be doing fine though I was in charge of the game area, so I wasn't paying close attention to him. While I was with a group of children, Evan came up to me and said, "XXXX is SO RUDE".

Oh, boy. Seriously?! XXXX's mother is standing right there, and I don't know her so I can only guess at what she is thinking right now.

I was totally taken aback and should have reacted differently. I think I said something about that not being nice, and then the SpEd teacher quickly jumped in and said, "but sometimes he is very nice" and redirected Evan to a different activity.

When Evan's group made their way to the games, I was sure to pull him aside and tell him that what he did wasn't appropriate and that it is o.k. for him to feel that way but he needs to tell me quietly and privately, and that he needs to apologize to XXXX because he probably hurt his feelings.

Then, I was sure to catch the mother on our way out after the party to let her know that Evan's actions were not appropriate or o.k. with me and that I have spoken with him, and will also speak to the school since I wasn't pleased with how the SpEd teacher dealt with the situation either. I  also apologized myself to XXXX.

This is not going to be the last time this happens. It's also not the first. Just two last week we were at my niece's band competition and as we walked to the field there was a man in front of us smoking. We all thought it was gross, but Evan yelled, "DUDE, YOU ARE GOING TO DIE". So, yeah....

This is the first time I witnessed this sort of interaction with a peer, however. And, here is how the negative assumptions about autism start. This is when my parenting skills get questioned. I'm not blind to this, but it bothers me greatly and scares me even worse. Not for me, but for Evan.

On the bright side, I was totally distracted enough to not be sad that Evan was the only one inside while all the other kids paraded past proud parents. Sorry, I've got no parade pics to share people, but I can tell you that the most popular costume was 'Other'.


Sunday, October 25, 2015

A Sensory Nightmare: Great Wolf Lodge

Need I say more than the title implies? Probably not :)

Our mistake this morning was not making Evan put on his headphones while he spent an hour at the arcade. It ended up with him like this:

He didn't stay like this too long, but long enough for me to take the girls out to the water park until Evan and Jayme were ready to join us. Even then, Evan spent a few minutes on my lap getting some deep pressure before he was ready to change and go in the water.

We started having Evan wear headphones around the time he was 3 or 4. At first, we had to put them on him before he got overwhelmed, or he would fight them being put on his head. Over the years, he has gotten to the point where he will initiate wearing them on his own, but he still doesn't always recognize when he needs them. For those not familiar with this strategy, I'll just say that for Evan, who is very sensitive to noise (not always loud, by the way), he is able to tolerate much more activity when he is wearing his headphones and is less prone to meltdowns. This has been significant enough for us to insist that he wear them at school, and we have no less than 3 pair floating around our lives for easy access. Jayme and I are often surprised that this strategy is not used more with kids that have autism, but it is our firm belief that as long as he is comfortable wearing them than everyone else should be too, and we encourage people to ask him about them because he'll give you a very honest answer about why he wears them.

Anyhow, when we arrived at the indoor water park yesterday, it was he who initiated wearing them in the water. I was surprised, actually, but he insisted that he wanted them on (and have you been in an indoor water park? I wish I had headphones too). So, we spent our hours yesterday and today in and out of the water like this:

This turned the heads of more than one child and adult and led to what I hope was a productive conversation between a child and his mother in the hot tub, but I saw two kids covering their ears today that also probably wished they had headphones on. Evan did great, and without a doubt, these headphones made this resort accessible to him. I would argue that he tolerated the lights and noise better than his parents because he was sad to leave and wants to go back for his birthday, and Jayme and I are just like Dude, really?!


Sunday, October 18, 2015

Evan Wants A New Life

Evan is really struggling with all of his therapy...the concept of it, that is. He is starting to understand that no one else he knows has to always "do work". He'll ask if anyone is coming over to the house, and when I answer yes he'll start crying and say things like:

I want a new life!

I want a new life without therapy!

I don't like this life!

These statements are very hard for us all to hear and just pierce my heart. If your child's soccer coach told you that practice was mandatory 5 days a week for 3 hours each day, you'd probably think they were crazy. Yet, that is what we ask of Evan, and trust me on this - therapy is not nearly as fun as soccer.

So, when do we stop? Why don't we stop? When do we say that skills he has are enough? Good questions. We don't know. What we know for certain, based on research and our own experience, is that in order to maximize his skills in hopes of him attaining independence as an adult requires intensive intervention now. Try explaining that to a 6 year old.

We were driving to speech therapy yesterday and he cried to me:

I want my old life back!

          - the one where you'd bang your head every day until your nose bled? Sounds lovely.

When is my last day of therapy?

          - 2026? Or, maybe never?

While I was waiting for Evan to finish his session yesterday, I was reading a blog on The Mighty about a Dad's struggle to get his son to take his chemo medicine every night. Now, that is tough. While I worry about Evan's mental health in the future (kids with autism are three times more likely to commit suicide in their teens so, yes I worry about this now because somehow as we pummel him with therapy we have to also convince him that though his brain is different, it's not bad and that we love him just the way he is, even though we are trying to change the way he is), this is no life or death battle. A little perspective taking during these times is always good for me, and while my heart will still hurt when Evan cries to me that he doesn't like his life, well...if that is the extent of our problems, then we are truly blessed.

Wednesday, October 14, 2015

The Story of Stimming

"The term "stimming" is short for self-stimulatory behavior, sometimes also called "stereotypic" behavior. In a person with autism, stimming usually refers to specific behaviors such as flapping, rocking, spinning, or repetition of words or phrases."

"...people with autism stim to help themselves to manage anxiety, fear, anger, and other negative emotions."

Like with most things with autism, there is a socially accepted preconception (by the neurotypical community)  about what stimming looks like. Hand flapping is usually the first thing to come to mind. Evan doesn't do that.

But, shhh...listen...

...and you'll hear Evan stimming.

For several years Evan has been doing what I call tongue clicking; it pretty much sounds like what you think it would sound like. It's never consistent, and crops up now and again, and it's something that we've been keeping an eye on.

During the second week of school in September, Evan started clearing his throat obsessively. At first I thought he was getting a cold, and he did a full week later, but the throat clearing never went away. Then, he started making a verbal noise in the back of his throat, sometimes with the throat clearing and sometimes without. Then, his tongue clicking increased.

It is to the point where this morning as I was getting him dressed, he was being so noisy and all the sounds were going and I was thinking, agh - it's a cacophony trifecta!! (O.k, so I'm a bit of a nerd, but I was trying not to laugh out loud - lest I cry instead - and this was truly what was running through my mind).

Now I've got to worry if I should be worried about this, and I think that probably a call to the neurologist wouldn't hurt. There is nothing you can do, though, unless you try to extinguish the behavior with ABA or medicate to reduce anxiety, neither of which I'm ready to do yet. But, so the change in behavior is noted in his medical record, I will make the call.

Here is what I've been noticing, however...when I snuggle Evan and give him pressure, when he sniffs my neck to breath in my scent, when I hold him in the morning....


...there is silence.

Saturday, October 10, 2015

Sometimes The School Gets Things Right

I've been school bashing a bit recently, so I wanted to share something positive. I also hope it serves to let others know just how much the school can work on if you know to seek out certain services.

Evan is extremely rigid and like many kids with autism, he will only eat certain foods. Now, I'll stop your inner voices right there...he is my third child and my middle one is an extremely picky eater (as in, I consider her lunch choices to be varied because every day I make her a different shape of pasta), but this is different. Autism adds another layer of complexity to picky eating which is hard to explain unless you live it, but an example of this might be the day Evan didn't eat any solid food until 4pm (liquid only), or the fact that popcorn has served as his breakfast food more days than I can count. We are luckier than many in that he will eat a wide variety of food, but only on his terms.

At school, Evan orders the bagel lunch every day. Every. Day. I can still hear the doubters...that fact on it's face may not seem totally unusual, as lots of kids eat the same thing every day. The problem here is that we run the risk of establishing a behavior that we cannot extinguish. Evan once had a therapist whose adult cousin has autism, and he ate  McDonald's every day for lunch. Every. Day.

The other problem is that Evan doesn't have the flexibility to make another choice, and this is really where the danger comes in. One day last year the school ran out of cream cheese, and so Evan didn't eat.

After Evan had such a bad summer program at school, his eating issues became elevated by the school BCBA (in what I feel is a 'cover my butt' move, but I'll take it). Though we had different priorities, hers being that Evan be more flexible with lunch box packing at home, mine being that he be more flexible with lunch buying at school, ultimately I got to choose what we worked on first because I'm his mother.

So, after ironing out his lunch buddy program (which is back on track, minus the girls participation for the time being), the school began his new behavior program this past week. First, he was shown a social story about buying pizza with his bagel; there was lots of planning that went into this, and I'll spare you the details, but it was a program that I was comfortable with and felt like he wouldn't be denied food if he chose not to eat the pizza.

Don't you know, I got an email after lunch yesterday telling me how great Evan did and he ate almost the whole piece of pizza and wants to order it again next week. Success!! (O.k, I never thought I would consider the act of ordering school pizza a success, but oh - how times have changed for me).

We've got a lot more work to do with this plan as we are essentially going to be trying out all of the school lunches that I think he would eat, like chicken nuggets, for example. In this instance, however, I've got the school understanding how a behavior that can look so normal on it's face can be so detrimental and rigid. The school is responsible for educating our kids every second that they are in the building and lunch is no exception...hats off to Evan's team for making this lesson go so smoothly.