That's just life

As gratified as I was by the response to the last post, indignation at the woman's comment wasn't really my intent. I was really just jotting down my thoughts on the zoo experience and how it must feel to my little guy. I wanted to remember the struggles he deals with, for those moments when I'm not feeling so patient, so willing to carry his growing body. (And yes, Beth, I most definitely felt that "workout" the next day!) Forcing myself to see the zoo through his eyes and senses made me realize what an overwhelming place it can be. Talk about a constant influx of stimulation!

But you all reacted to what the woman said. How she passive-aggressively told me I was babying my big boy. Funny though. While I certainly was annoyed by her comment at the time and knew not to bother explaining my actions to her, those feelings of annoyance didn't stick. Not really.

And it's not that I disagree with you all. She was way out of line. And I would never even think to say something like that to a parent. But, you see, that type of experience just isn't that rare. I'm sure any of the special needs parents that read here could easily share a story of unrequested opinions and advice. Or recount episodes of glares, pointed looks, and angry body language. There ought to be a slogan in the Autism community about the gateway to Hell being deep in the bowels of any grocery store.

Autism is an invisible disease. You can't look at a kid and know he's Autistic. But many have behavior problems that are oh-so-apparent. George is a screamer. Not so much as he used to be. Every word added to his vocabulary is one less scream. But still, the tantrums happen. And, to those who don't know him, they look like a bratty little boy not getting his way. And his mom giving in to his needs, letting him "win". And sometimes, instead of screaming, he needs to cuddle with his mommy. And for the sake of his sister, who still has an hour's worth of animals she's excited to see, his mommy is willing to carry him for that hour.

I don't know where I'm going with this. Just that, I'm used to the comments and looks. I don't like them, but I understand how he appears. And as much as I would like this to be a perfect world where people don't judge and maybe consider that something they can't see is in effect. Well, that's just not the real world, is it? I do wonder why some people feel it's okay to share those judgements, though, I can't imagine why they think they would be appreciated, valued, or listened to.

But seriously, does this look like a brat to you?

My baby

Three hours spent at the zoo.
The last hour spent with George in my arms.
A (well meaning, I'm sure) lady standing beside us, watching me shift his weight.
"How old is your son?" she asks.
At my answer (five), she addresses him in a fake, super-saccharine voice, "you're such a big boy, much too big for your mommy to carry."
Um, thanks but no thanks.
"He's fine", I answer, and walk away.

There are things you can't see, things you don't know.
No, he wasn't tired. When in an open area, he quickly scampered down and ran free.
But the zoo is a crowded place.
Full of nooks and crannies and people.
Look here! See that! What is it? What sound does it make?
Demands on his processing skills, assaults on his sensory perception.
Quite simply, after a couple of hours, he was full.
Overloaded even.
He found it difficult to focus on and enjoy the remaining animals, though they were some he had wanted to see.
A quick glance, a response of "yeah", and then his head returned to burrow in my neck, hands tucked between us.

So yes, I carried my five year old big boy for an hour.
And I loved every minute.

Even at almost 1,000 pounds, little boys need help from their mommas.

TV's not so bad

As long as you're busy making robots while you're watching Robots.

George has always echoed and acted out scenes from the videos he watches. But I've noticed lately that he wants physical props. So, we pull out the Lego airplane when he's watching his airplane documentaries; play with the wind up submarine in the bathtub after watching boat documentaries; and this morning, we made several robots out of Tinkertoys while watching Robots. So much creativity going on around here lately, I love it!

Note to grandparents wondering what to get George for his birthday: We need more Tinkertoys!

So much of my time is spent researching, advocating, and trying out new teaching/learning methods for George. Being sure that his IEP covers certain aids that will help him succeed in the classroom. Finding teachers and therapists willing to work with him one-on-one and getting feedback from them on the methods that work best. By law, educators have to help him be successful and put into place additional supports towards that goal.

But what about my "typical" child. I work with her at home on her homework, and in the classroom during her independent writing period. She's a smart girl. Recently she's begun working with a TAG pull-out program. But she's struggling. Some of it is the stress she puts on herself to achieve, some of it is the distraction of a busy classroom, and some of it is due to a more challenging program. And I feel bad. Because, you see, I went to the principal of her school and mentioned that she was bored with the textbook work. And our principal is a great one. Within a couple of weeks, a teacher was hired part-time to create and teach the pull-out program. And I'm grateful, but worried that I'm pushing my girl too hard.

I know she can do the work, but what wouldn't I give to create an Individualized Education Plan for her? That one-on-one instruction that helps George achieve, well, it sure would help Emma, too. And the extra time he's given when being tested (granted, pre-school testing is minimal), Emma could use it to gather her thoughts better. The headphones and blocked sight lines that help remove George's distractions, my easily distracted girl could REALLY use something like that.

It's a strange conundrum. Those of us with special needs kids work so HARD to be sure that they have every single support that they need. But our neuro-typical kids often need them, too. But because they're neuro-typical, they don't get them. Sometimes the fight for equal education isn't equal at all.

Emma has expressed interest in learning cursive handwriting. So I purchased a workbook, and this summer, we'll spend time working on it together. I'm hoping that over the course of the summer, I'll get a better grasp of her learning style. Because I am her support, her one-on-one, her therapist and teacher.

Easter cuteness

Between my daughter's outfit and my son's chocolate-stuffed cheeks, it was almost a cuteness overload!

Yesterday:

Click on photo group to go to the entire Flickr set

First horseback riding lessons.
Real cowboy (and cowgirl) boots.
Instructors and volunteers who know how to work with special needs kids.
Instructors and volunteers who understand that siblings are pretty special, too.
Saying, "Whoa".
Kicking with boot heels and making clicking noises.
Learning to trust a horse.
"Steering" it around obstacles.
Trotting!
Trying something new.
LOVING it!
Looking forward to the next lesson!

Band-Aids fix everything, words & kisses are better

When George was younger, he went through a aggressive phase that was usually directed at Emma or me. Poor Emma had her hair pulled (completely out of her head usually) many times and we both were hit when he didn't want us close. Most often, this happened in the middle of too much stimulation and frustration. His verbal skills were very minimal and communication between us all was difficult. The one action that appeared to be very deliberate and that (luckily) was most often directed only at me, was scratching. Using his very sharp fingernails he would find a bare arm, occasionally a cheek or neck, and very purposefully dig a long scratch into my skin. Not a fun phase, I assure you.

He hasn't done anything like that in a long time. His school has taught him excellent coping and calming skills, and just having words available has relieved much of the pressure inside his head. By no means have the tantrums gone away completely, but they are non-violent and there is virtually no un-prevoked aggression. (Emma's no angel either, make no mistake.)

Today, he became very frustrated with me for daring to tell him that he had his zip-up sweatshirt on upside down and might have trouble zipping it. I know, what was I thinking? At one point, as I was stopping his flailing hands, I saw the lead up to a scratch. Strangely enough, it was fascinating to watch the process. His finger pointed and curved, and I watched his eyes looking at me and the war going on behind them. He knew what he was about to do and knew it was wrong, but was going to try it out. And I let him (drawing away slightly to minimize the damage). With quick but careful movements he swiped at me, scratching the surface of my neck. I didn't yell, but opened my eyes wide and gasped loudly at him. Immediately he stopped, pulled away, started crying and repeating the words, "I'm sorry, Mommy" over and over as he petted my neck gently.

I wish I could get into that brain of his. I watched it work today. I watched it struggle. Which part of the decision making process broke down and regressed? How does it feel to watch your body do something your brain knows is wrong?

As he began to calm down, he pulled me to the band-aid drawer to help "fix" me. I assured him that a kiss would be enough to heal the wound. And his sweet little boy kiss most definitely did fix my pain. I wish my kiss could do the same for his.

Confetti!

I'm spending a lot of time lately going through old IEP/IFSP paperwork (the goals set by myself, George's teachers & therapists, and the school district), preparing for next year. I came across one from about a year and a half ago. George's Autism therapist gave us all kinds of exercises to do that would help strengthen his hand muscles.

To work on his fine motor skills.

To teach him how to use scissors.

I think he's got that skill down pat. Luckily his gross motor skills are doing great, he can help me run the vacuum this afternoon.

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Find out more information about Autism and ways to support the amazing Autistic members of your community. April is Autism Awareness month, and today is World Autism Awareness Day. Here are some sites and blogs where you can get information:

Autism(at)Change(dot)org
Autism Society of Oregon
Teen Autism
Spectrum Siblings