Archive | May, 2013

Burned by summer? Read on

Summer…it turns me upside down
Summer, summer, summer
It’s like a merry-go-round.

Just like the Cars sang, the merry-go-round that is the calendar is about to turn to Summer.

School ends next week. It’s even getting warm in my northern Michigan town, finally. I can’t deny it any longer.MerryGoRound

Summer’s tough for many families with a child on the spectrum as the spine of the structure of their lives–the school day—vanishes. Our last one was miserable. Long, unstructured days provoked my son’s easily-aroused anxiety, which sent his behavior spiraling down. Lacking that six-hour school day break, my husband and I were more stressed, to the point where I sometimes fled to the garage to scream obscenities as a release. Frequent disruptions cropped up—for vacations, therapists taking vacations, guests visiting—compounding anxiety and stress and misbehavior. To top it off, we didn’t have air conditioning.

Notice the past tense of that paragraph, though. This summer, I am vowing, will be better. One huge reason: We enter it poised for the payoff that led us to choose a Montessori school for our son two years ago. Next year, he’ll return to the same classroom. No transition will loom over Summer 2013.

In hindsight, we believe anxiety over an ill-suited new teacher contributed significantly to last summer’s trials hell. Well-founded anxiety, as it turned out, since we had to request a new classroom assignment three weeks into the school year. He’s thrived in the second class ever since. An encouraging sign: Christmas break, which I had dreaded, wound up going fairly smoothly.

We’ve also lined up more structure, in the form of an ABA therapist who will work in our home three days a week. Michigan passed autism insurance reform last year, making this more affordable. Clearing all the hoops with insurance meant starting back in November. But we did it.

One more thing. My vow is better. Not perfect. I’m not deluding myself about the reality of the summer merry-go-round. But the garage is still there. We don’t have air conditioning, but we got a ceiling fan. When I feel our world start to spin out of control, I can lift my face to its cooling breeze and remember summer, too, shall pass.

How are you preparing for summer?

Comments { 1 }

Eat more than 3 foods? Never in a million years. Eat more than 3 video game controllers? No problem!

So my son has developed a new habit/stim/quirk/etc and that is chewing stuff. In the winter, he chewed his coat and his hat and his gloves. Since those were replaced with.. uhmm… nothing, it’s warm… he’s now taken to chewing other random odd things. Most notably, video game remotes.

It started with those rubber grippy things on the Wii remotes. I easily solved that problem, I removed the rubber grippy things. Wait, that’s not what they’re called? Well, what ever. You know what I’m talking about.

I thought, ever so foolishly of me, that the Xbox remotes would be pretty safe since they’re really quite solid and hard. I mean, he wouldn’t chew on those right? Wrong.

xbox chew toy

xbox chew toy

So yeah, now I have 2 rubber grippy things that are trashed (just the edges are nibbled on really but you just can not hold them in your hand with those edges like that) and I also now have 2 Xbox remotes that look like what you see in the photo (click for full size).

Yes, I have other stuff for him to chew, but does that stop him? No, it just gives him other stuff to chew.

If it’s not his nails, it’s random threads from clothing and if it’s not that, it’s my appliances.

Is this an autism thing? I don’t know. I’d like to think not. I mean, kids do these things sometimes.

Still though, not every child does. And that makes it one of those things that I can write about. Not to shame him or make him feel bad when he’s older and possibly reading this (Hi Cameron!!), but just as something for other parents to read and go “I totally know how frustrating that is!”

And hey, who knows, maybe one day Cameron will have a child and that child will eat his rubber grippy things. Or… new age polymer type stuff. What ever those new fangled toys kids will be playing with then.

If that happens and he tells me about it, I’ll refer him to this post. (Hi again Cameron!!)

Comments { 5 }

When did ‘different’ become wrong? or Acceptance is not a one way street


There’s something about you that’s different

I couldn’t decide on which title I liked better so I just went ahead and used both.

There seems to be a divide growing between certain autistics and certain parents. Not all. Just certain ones. My fear is that divide is growing.

I cringe when I see people talk about how they don’t understand how “the camps” can’t work together. For me, I don’t understand how there can be “camps” at all. Yes, autistics are different from parents and children are different from adults but really, aren’t we all different anyway? Autistics are different from other autistics and parents are different from other parents.

In the camp of differences, we all belong together.

So it hurts me when I see people share their experiences and opinions and get attacked for it. Now, don’t get me wrong. If someone tells me the green grass is orange, I’ll be pretty quick to say “no it isn’t.” But really, do I need to? Is it a requirement of mine to correct them? Or worse, am I bound by some law that says I have to attack them for what a horrible person they are for believing it’s orange?

What if it turns out that the person has a condition, such as color blindness, that truly does make the grass look orange to them? Are they still wrong? Is their perception wrong? Do I proclaim them wrong because their brain interprets things differently than what mine and my friends brains do?

A parent is going to have a different perspective than their own child. That just has to be. I mean that whether the child has autism or not. If a parent shared a child’s perspective and was only interested in appeasing that child’s wants, then the child would have totally chocolate dinner every night, a water park in their bathroom and video games would replace school.

When I hear about a parent that “leashes” their child while out, or fences off their backyard or school yard, I find that it almost always accompanies people that don’t just share their own opinion that a parent shouldn’t do that, they outright attack that person’s intelligence, age, education, parenting skills, rationality, mental stability and oh so much more. People are vicious. They never once consider that person or their child’s past. Does the child have a history of dashing off? Into traffic? Is the child incapable of staying close by for some reason? Is the parent incapable of reaching their child should something happen? Perhaps they have a medical condition of their own such as bad knee or back?
The point is, maybe they just are way too overbearing… or maybe they have a very good reason for keeping their child safe in the way that they know how.

When I hear about an autistic that tries to share their experiences in just how hard life can be sometimes, I find that it almost always accompanies people that hate them for being negative when others are trying so very hard to make autism out to be a positive thing. Or conversely, there are those that hate autistics that share their successes and triumphs only because they’ve been trying so hard to paint autism as a very dark and debilitating thing. They don’t take the time to understand how hard it is to share these things or how hard the journey was to overcome the obstacles they did… they simply attack for not representing their own situation or for “giving people a false impression” simply because it does not reflect their own situation.

Everyone is different. Everyone’s perspectives are different. Everyone’s experiences are different. And for anyone, autistic, parent, child, etc to request/demand acceptance from others, they must be willing to do the same.

Instead of condemning a parent for protecting their child from the evils of a chocolate dinner, accept that they are different from you. Before you condemn an autistic for making the world think that not all autistics are like you or your child, accept that they are just different from you.

I am different. And I am proud. And quite frankly, I don’t care if you accept that about me or not. But know that I understand just how different you are. And I accept that too. You won’t parent how I parent. You won’t “be” as I will “be”. You won’t see the orange that I see.

If someone says something that I disagree with, that doesn’t make them wrong. It makes them different. And even if I do feel they’re wrong, it’s not my job nor my duty to attack them for it.

Different is not wrong. Acceptance is not a one way street.

Let’s accept the differences in those that we demand acceptance from for our differences.

Comments { 11 }

Laying the blame

blameThere is so much blame going around, I seem to find it everywhere.

There are parents that blame vaccines or the environment or doctors for their child’s autism. There are some autistics blaming their autism for their inability to succeed. There are some parents blaming autistics for giving people a false impression to people of their child and then there are autistics blaming parents for giving people a false impression of autistics in general.

The worst is when I see advocates (you know, the people who actively try to reach as many people as they can and even influence people in some way) that blame each other for something or another. Especially when someone actively goes out of their way to either visit someone in their home (their blog or place they advocate) and attack them there or to write on their own about those other people.

I’ve written several times about how division in the autism community saddens me and I’ve felt that it’s far too depressing and, quite frankly, pointless to continue writing about. It would seem that there will always be division, so wishing for it to change just isn’t going to make it so.

I’ve grown a lot since I started writing though. I mean, I still believe now, as I did then, that people should not be fighting and should work together instead. However, now I realize that wishing for something isn’t going to accomplish anything. Even some positive words, a moment of enlightenment, won’t change anything.

What I have found, what I believe, is that the root of the problem is blame. We’ve become so frustrated with our own situations that we need to find someone or something to blame.

We can’t work together and we can never come together as a community until we can learn to stop blaming each other.

I’ve come to realize that blaming someone for saying or being a way that I don’t agree with is no way to resolve a situation. Blaming them for affecting my life or anyone else’s life is no way to bring about peace and unity.

The best that I can do… the best that I can be… is to focus on me. Improve my message, make my message a message worth hearing. Make what I have to say, better and more worthwhile than the message that I disagree with.

The best way I can bring about positivity is to let go of my own negativity and stop laying blame. If someone is wrong or is doing something wrong, they’ll have to live with that and it’s consequences whether I say anything or not. And if I do play the blame game, I myself will have to live with that and it’s consequences too.

If you can’t climb the stairs, don’t blame the stair maker. Find another way. If you can’t see the words on a page, don’t blame the author. Find another way. If therapy isn’t going your way, don’t blame the therapist. Find another way. If your finances aren’t going your way, don’t blame your job. Find another way.

Focus on you and how you can be the best that you can be. Over come the obstacle, don’t focus on who’s to blame for the obstacle.

There is zero success in blame. Your success will come from realizing there is no blame, there are only challenges to better yourself by.

Comments { 5 }

Minecraft and Autism – Putting the two together in video

My children love Minecraft. It’s a “sandbox” kind of game, meaning that what you do in it is entirely up to you. You can build, adventure, fight… what ever! As I always do, to better relate and help my boys, I started playing it myself. I do this with all games that they play. I feel it’s important.

Lately, I started recording myself playing Minecraft as I was requested to show what I was working on and to create tutorials on how to make some things.

So I decided that I am going to make an effort to combine Minecraft with what I do in the autism community and that is… share.

In this video, I head out from my base and just start walking. All the while, I talk about who I am, what I do and most importantly, why.

Comments { 1 }