October 28, 2012
There are times when I realize that my oldest knows too much.
Like the other day when Howie was bouncing off the walls after school and Gerry asked me if he had had a good day at school. When I answered “Yes” he replied with “I could tell. He held it together all day at school and is letting it go now at home where it’s safe.”
And then there was tonight.
I was working on dinner. We had just received the call that school was cancelled for tomorrow due to the hurricane.
Gerry was on the couch about to start a game on the Playstation. Howie was rocking back and forth in his beloved green chair right next to the TV.
The verbal stimming had started. For Howie, this is his “silly words”. He yells out a string of nonsense words while he sits in the chair.
For the sensory avoiders in our house (my husband, Gerry and myself), the sounds are our trigger.
I’ve worked hard with Howie to remind him that he can make his silly words but he needs to either do it quietly or in another room if someone is trying to watch a show or play a game.
Many times, this scene ends with Gerry yelling at Howie to stop. Conflicting sensory overloads.
Gerry started. “Hey Howie!”
I braced myself.
“Hey Howie. I’m about to start my game. If you have silly words, can you let them all out now before I start a new level?”
“Okay,” came the answer. Followed by a thirty second long string of loud sounds and words.
“Thank you.” And Gerry started his game.
I still didn’t move.
About five minutes in, Howie looked at Gerry and said “Wait! I have more.”
Gerry paused his game. Howie let another string of sounds and words out. Then stopped.
Gerry turned to Howie. “Thank you for warning me. I appreciate it.”
He glanced over at me.
I mouthed “Thank you.”
And game playing started again.
I know I ask a lot of Gerry. And a lot of what I ask is conflicting and confusing. I ask him to understand his brother and tolerate his behaviors, yet I reprimand him when he steps into the role of parent. I want him to know why his brothers do what they do, but then ask him to do things that go against his own sensory sensitivities.
My kid takes on more than he should and yet I need him to.
Tonight, he showed acceptance and understanding. And in the most loving way possible.
My boys in pink. For breast cancer awareness day at school. Gerry told Howie that his tie was “awesome”. I think they both are pretty cool kids.
“Not enough love and understanding
We could use some love to ease these troubled times
Not enough love and understanding
Why, oh why?
We need some understandin’
We need a little more love
Some love and understandin‘” – Love and Understanding by Cher
October 26, 2012
Posted by akbutler under My Three Sons
, sensory processing disorder
| Tags: autism
, Hurricane Sandy
, sensory breaks
, Sensory Processing Disorder
, weather changes
|  Comments
E-mail I sent to Howie’s teachers this morning:
Just wanted to give you a heads up with Howie and the upcoming hurricane. Howie is very sensitive to big changes in barometric pressure. I am as well but while it manifests itself in the form of a headache for me for Howie it causes big behavior changes. His vestibular system gets rocked when the pressure drops. I know it sounds weird, but we’ve seen it several times, including the last hurricane and that summer when the tornadoes rolled through western MA. It’s usually about 24-48 hours before the actual weather event comes in.
With this upcoming hurricane, I just read that the pressure will drop incredibly low. Based on the track of the storm, Sunday is more likely to be Howie’s harder day, but he could start feeling it as soon as today and into Monday. If you see extra stimming, or he seems out of whack, it’s probably that.
Hopefully we won’t be hit too hard! At least it’s not snow!
These are the types of e-mails I write lately.
The news today is full of reports of a “Frankenstorm” as Hurricane Sandy heads towards the east coast. Forecasters are calling for an incredible drop in barometric pressure as it hits land sometime late Monday and into Tuesday.
And so I write e-mails about meteorology and storm tracking and sensory processing disorder.
I know that for some people this connection makes no sense. As in “really? The weather affects your kid’s behavior? Come on. Weather changes were something that made old people complain about their aches and pains, but it’s not really real. “
It’s just an excuse for his bad behavior.
I’ve been at this long enough with my kid to tell you. It’s real.
I get headaches and neck aches right before a storm comes through. When Hurricane Irene passed near us last summer, it felt like someone was standing on my head.
I can verbalize it. I can explain what is happening and why. And people understand it.
My son can’t explain it why all of a sudden he needs to run laps or crash into things or spin in circles and stim. His reactions to the same trigger look like behavior problems.
It sounds like hooey to someone who doesn’t live it. But I’ve tracked it. Storms, moon phase changes, illness…all these things affect my son’s sensory system.
They probably affect all of our sensory systems. But most people have learned to cope with how we’re feeling. A few extra Tylenol. Or a nap.
Howie is still learning what makes him more regulated. He knows what activities make him feel better but he has yet to figure out the trigger or how to do it most “appropriately” for the setting.
I’m not making excuses for how he’s acting. If he’s being unsafe or not able to be in the classroom then he needs to be removed, redirected and helped. Unacceptable behavior is still unacceptable behavior.
I will however be proactive in helping those around him understand what is a sensory response versus what is a behavior so he doesn’t get into trouble for something he can’t control.
So that maybe he gets an extra sensory break during the day. Or two visits to the OT room versus just one. Or just a well trained eye on him looking for signs of discomfort and dysregulation.
And hopefully we can teach him why he’s feeling the way he does so that next time, he has the tools he needs to cope and feel better.
So I send e-mails warning of Hurricane Howie as Hurricane Sandy approaches.
At home, we’re stocking up on Stonyfield yogurts, fruit leather and flameless candles and padding the house with pillows and bean bag chairs for safe crashing.
Getting ready to weather any storm that comes our way.
Got our umbrellas ready
“Squalls out on the gulf stream,
Big storms coming soon.
I passed out in my hammock,
God, I slept way past noon.
Stood up and tried to focus,
I hoped I wouldn’t have to look far.
I knew I could use a Bloody Mary,
So I stumbled next door to the bar.” – Trying To Reason With Hurricane Season by Jimmy Buffett
October 16, 2012
I wrote today’s SPD Blogger Network post on three hours sleep.
We play sensory detective a lot in our house. Last night was no exception.
Come read Don’t Speak over at the SPDBN and let me know what you think is going on in our home.
Here’s a hint. It has something to do with this:
ah…hunger. Or not.
October 10, 2012
I have a million and one things jumbling around in my head.
I want to write about them all. But I can’t seem to get them out. They are stilted fragments of mixed up blog posts stuck in all different parts of my brain.
So I needed something good. Something short. Something that made me smile.
Yesterday in Howie’s backpack, this came home:
“I used my fingers”
There are so many things I love about this. Here’s a few:
1) He answered the question.
2) He answered it very literally. Because that’s him. How did you count them? I used my fingers. Of course.
3) His teacher did NOT mark it wrong. Because it’s not wrong. Was it the answer she expected? Nope. Is it right? Yup. This is what good teaching is. His teacher GETS him. She could have said that wasn’t correct. Instead, she prompted him with another question about it to help him get to the next level. It takes me back to my friend Stimey’s post Not Even Wrong. Good – GREAT – teachers respect how our kids think, give them credit for that, and then work with them to see it from another perspective.
4) I love how he spelled out “yoosd”. Phonetically it’s perfect. And another example to me of how tough our language is to learn – especially for literal, rule minded, pattern loving thinkers. Of which I have three in my house.
5) Howie’s handwriting. It’s better than my husband’s. This kid struggled with holding a pencil from the start. You’ve come a long way, baby.
6) My kid is doing math. And he’s writing. And he’s getting the concepts and generalizing them.
Ask me if I thought this would be possible for first grade…on second thought…don’t.
There are so many ups and downs on this parenting rollercoaster. So many times my heart breaks a little for my kid when I watch how hard he struggles just to be comfortable in his own skin. So many many sleepless nights for us all.
And then there’s this. The progress that happens in an environment tailored to celebrate the successes of my child and challenge him to think in different ways. The willingness to think outside of the box for my kid to help him think outside of the box.
That’s worth celebrating in a blog post today.
“I built a bridge across the stream my consciousness
It always seems to be a flowin’
But I don’t know which way my brain is goin’
Oh the rhymin’ and the timin’
Keeps the melodies inside me
And they’re comin’
Till I’m running out of air
Are you prepared to take a dive into the deep end of my head
Are you listening to a single word I’ve said
Ha La La La La
Listen closer to the words I say
Ha La La La La
I’m stickin’ to the wordplay” – Wordplay by Jason Mraz