Friday, April 27, 2007

Madame Vice President



Welp, she won. She jumped in the truck tonight and said "I win". She's pretty excited. They sent some of the posters home and they made me tear up. It's just SO cool the way they accept her. God, if her life would only stay this way.

The brothers are up to their old tricks and so joins the tee-ballers too. Dang - just seems to be a cloudy day in Mr's life. What is it about older siblings??? What a pain in the butt they are to us younger ones. :-)

Wednesday, April 25, 2007

S, sometimes your brain is too small.

This is what J said this morning. He was trying to explain something technical (bickering) and S was letting him know that she wasn't going to hear it. It was funny. Also, during b-fast we had WLS on (as usual) and as we were finishing up S heard "S, from Plainfield, you're on WLS, good morning." S looks up and says "that not me". :-)

IEP yesterday. Looks VERY good. Going to have Ms Carla again and the same aides. I'm kind of excited. S is doing VERY well. I do wish all things could stay the same - I so love Mrs Susan. As long as the next teacher has a sense of humor. S wore her "I am the *I* in IEP" shirt. They all loved it.

J's b-day coming up. Think we're going to do the Chuck E Cheese thing again. It's just so easy. Or maybe we could do a park. I'm not sure now. Have to get a hold of Aunt J and see what her take on it is. Aunt L has put in her two cents. Ends up she knows Coach Chris and his wife. We hung out at tee-ball the other night. That's too funny because Chris had originally caught my eye because of how good he is with the kids. He's really a nice guy and his wife is SO cute and funny. I'm so glad L was there - I had almost written them off as part of the "cliche".

J asked this morning about the score of the game. He was very grown up about it. (they got beat - by a lot). His response was "it's all about having fun." :-)
Gotta love that kid.

Sunday, April 22, 2007

Amazing

Several things tonight:
We recently traveled down to McClean IL (2 hour trip south) to meet Gma and Gpa and deliver S to them. She stayed with them for the week of Spring Break. As we were going from the bathroom into the McDonalds there we were approached by two girls who said "Hi, S". I was stunned - how many of us could travel 2 hours away from our home and have someone know us at age 9!!!! It was too funny.
Tee-ball parade this Sat. Had a GREAT time - over 700 kids. It kicked off at 8:30 am and at 10:30 we were walking to our car. I heard someone say they were done at 11 - this means that 700 kids plus parents and coaches walked about a mile in a parade - then every child got a single picture taken - posed with a bat - and then a team picture!!!! *I* think that's pretty darned cool!!! I personally have trouble getting two children to take a bath.
Autism awareness at church today - B and I got up and spoke. I think the first service was real good the second - I kind of lost my spark. SO many people came up to us afterwards (we were in charge of refreshments) and talked to us about Autistics that they knew. I can't get over how many spec ed teachers we have in church - but it makes sense. I'd like to see the stats about Spec Ed teachers and Christianity link. I don't think it possible to teach special needs and not believe in God. :-)
It's been a LONG but short weekend. SO much packed into it - I'm SO not ready for work tomorrow and poor S had to be talked into wearing "sweats" (elastic waist pants - leggins) because Mom didn't get laundry done this weekend. uggh. Plus she needs a hair cut - which I promised I'd do tomorrow before J's game. And they say it just gets worse from here. Lord, give me strength.

Saturday, April 14, 2007

Someone named Mr. Alex posted this on the Yahoo Q&A site as an answer to
someone who asked what autism is. I can't confirm if this is indeed
someone who is on the autism spectrum or a knowledgeable person
describing characteristics "in character." However it is a good
introduction to families who are still trying to understand all the
sensory behaviors of their children.

From Mr. Alex -- I am a child with autism. I am not "autistic." My
autism is one aspect of my total character. It does not define me as a
person. Are you a person with thoughts, feelings and many talents, or
are you just fat (overweight), myopic (wear glasses) or klutzy
(uncoordinated, not good at sports)?

My sensory perceptions are disordered. This means the ordinary sights,
sounds, smells, tastes and touches of everyday life that you may not
even notice can be downright painful for me. The very environment in
which I have to live often seems hostile. I may appear withdrawn or
belligerent to you, but I am really just trying to defend myself. A
"simple" trip to the grocery store may be hell for me. My hearing may be
hyperacute. Dozens of people are talking at once. The loudspeaker booms
today's special. Muzak whines from the sound system. Cash registers beep
and cough. A coffee grinder is chugging. The meat cutter screeches,
babies wail, carts creak, the fluorescent lighting hums. My brain can't
filter all the input, and I'm in overload! My sense of smell may be
highly sensitive. The fish at the meat counter isn't quite fresh, the
guy standing next to us hasn't showered today, the deli is handing out
sausage samples, the baby in line ahead of us has a poopy diaper,
they're mopping up pickles on Aisle 3 with ammonia. ... I can't sort it
all out, I'm too nauseous.

Because I am visually oriented, this may be my first sense to become
overstimulated. The fluorescent light is too bright. It makes the room
pulsate and hurts my eyes. Sometimes the pulsating light bounces off
everything and distorts what I am seeing. The space seems to be
constantly changing. There's glare from windows, moving fans on the
ceiling, so many bodies in constant motion, too many items for me to be
able to focus - and I may compensate with tunnel vision. All this
affects my vestibular sense, and now I can't even tell where my body is
in space. I may stumble, bump into things, or simply lay down to try and
regroup.

Please remember to distinguish between won't (I choose not to) and can't
(I'm not able to). Receptive and expressive language are both difficult
for me. It isn't that I don't listen to instructions. It's that I can't
understand you. When you call to me from across the room, this is what I
hear: "*&^%$#@, Billy. #$%^*&^%$&*" Instead, come speak directly to me
in plain words: "Please put your book in your desk, Billy. It's time to
go to lunch." This tells me what you want me to do and what is going to
happen next. Now it's much easier for me to comply.

I am a concrete thinker. I interpret language literally. It's very
confusing for me when you say, "Hold your horses, cowboy!" when what you
really mean is "Please stop running." Don't tell me something is a
"piece of cake" when there is no dessert in sight and what you really
mean is, "This will be easy for you to do." When you say, "It's pouring
cats and dogs," I see pets coming out of a pitcher. Please just tell me,
"It's raining very hard." Idioms, puns, nuances, double entendres and
sarcasm are lost on me.

Be patient with my limited vocabulary. It's hard for me to tell you what
I need when I don't know the words to describe my feelings. I may be
hungry, frustrated, frightened or confused, but right now those words
are beyond my ability to express. Be alert for body language,
withdrawal, agitation, or other signs that something is wrong.

There's a flip side to this: I may sound like a little professor or a
movie star, rattling off words or whole scripts well beyond my
developmental age. These are messages I have memorized from the world
around me to compensate for my language deficits, because I know I am
expected to respond when spoken to. They may come from books, television
or the speech of other people. It's called echolalia. I don't
necessarily understand the context or the terminology I'm using, I just
know it gets me off the hook for coming up with a reply.

Because language is so difficult for me, I am very visually oriented.
Show me how to do something rather than just telling me. And please be
prepared to show me many times. Lots of patient repetition helps me
learn.

A visual schedule is extremely helpful as I move through my day. Like
your day planner, it relieves me of the stress of having to remember
what comes next, makes for smooth transitions between activities, and
helps me manage my time and meet your expectations.

Focus and build on what I can do rather than what I can't do. Like any
other human, I can't learn in an environment where I'm constantly made
to feel that I'm not good enough or that I need fixing. Trying anything
new when I am almost sure to be met with criticism, however
constructive, becomes something to be avoided. Look for my strengths and
you'll find them. There's more than one right way to do most things.

Help me with social interactions. It may look like I don't want to play
with the other kids on the playground, but sometimes it's just that I
simply don't know how to start a conversation or enter a play situation.
If you can encourage other children to invite me to join them at
kickball or shooting baskets, I may be delighted to be included.

Try to identify what triggers my meltdowns. This is termed "the
antecedent." Meltdowns, blowups, tantrums or whatever you want to call
them are even more horrid for me than they are for you. They occur
because one or more of my senses has gone into overload. If you can
figure out why my meltdowns occur, they can be prevented.

f you are a family member, please love me unconditionally. Banish
thoughts such as, "If he would just ..." and "Why can't she ... ?" You
didn't fulfill every last expectation your parents had for you, and you
wouldn't like being constantly reminded of it. I didn't choose to have
autism. Remember that it's happening to me, not you. Without your
support, my chances of successful, self-reliant adulthood are slim. With
your support and guidance, the possibilities are broader than you might
think. I promise you I'm worth it.

It all comes down to three words: Patience. Patience. Patience.

Work to view my autism as a different ability rather than a disability.
Look past what you may see as limitations and see the gifts autism has
given me. I may not be good at eye contact or conversation, but have you
noticed I don't lie, cheat at games, tattle on my classmates, or pass
judgment on other people?

You are my foundation. Think through some of those societal rules, and
if they don't make sense for me, let them go. Be my advocate, be my
friend, and we'll see just how far I can go.

I probably won't be the next Michael Jordan, but with my attention to
fine detail and capacity for extraordinary focus, I might be the next
Einstein. Or Mozart. Or Van Gogh.

They had autism too.

*********************************************************************************
I love this - SO very to the point. I may print this out and keep some copies of it for people. I think it explains pretty well how S should be handled and the definitions of autism.

Refrigerator Moms

Oh My Goodness!!!! They went through such HELL!!!! I can't believe how society totally bought into what Dr B said about Autism being the Mom's fault. Like life isn't hard enough!!! We owe these women a huge debt!!! And the treatment that the "professionals" prescribed!!!! Isolation??? It's amazing what society can deem "correct". It's as if there was no thought process at all. I admire all these refrigerator Mom's. They certainly had nerves of steel and a determination that I must aspire to. And even after we've come through it all - they have a sense of humor about it - a sense of forgiveness. I only hope I can be a "refrigerator Mom".

Sunday, April 08, 2007

This Is the Best Day of My Life

Says J. That was the statement made after we got into the car after church. And the reason - "It's Easter and I got a balloon." Well, shouldn't we all have that outlook. :-)

We took S to Gma and Gpas yesterday. I love her so much - but dang - it's SO nice to have a break. Church without scene, breakfast at church without problems, no one demanding things. It was NICE.

We colored eggs today - yesterday was just total break. I slept almost all day. New week starts tomorrow complete with ball practice and all the other stuff - so we get the house together, get some laundry done and plan in advance as much as possible. But it's still nice to have a break.

Friday, April 06, 2007

WHEN will it be Spring?????

When you simply witness your feelings instead of reacting to them, you allow your life to unfold naturally, and you open a doorway to greater sympathy and understanding. Most important, you develop your capacity to *be free* in an often challenging and turbulent world.


Ain't THAT a mouth full. This is SO my goal. I always pray - Lord, put your hand on my shoulder and one over my mouth. How many times have I said "shut up, shut up why can't you just SHUT UP?' After having had a bad convo with someone. The person I look up to most on this subject - E - has SUCH a nice way of just being silent and actually THINKING before responding. I don't engage my brain - just my heart before I speak. I think I need to find a more balanced way of handling things.

Well, I'm off to write up an article about Autism. Wish me luck.

Tuesday, April 03, 2007

Since you asked...

A couple of people I've talked to recently hadn't heard of the "Welcome to Holland" story -- So here ya go.....

Welcome To Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this.....

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. the Coliseum, The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!!! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around....and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy....and they're all bragging about what a wonderful time they had there. and for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away....because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things....about Holland.
***********************************************************************

There's a couple of things that I don't like about this - 1. why should she have to help others understand her life? 2. you will NEVER understand this life - until you have a special needs child. It's just not possible. AND one more thing - the guide books to Holland - are written in German. :-) NO ONE knows how to get around in this world of special needs - it's ALL trail and error - baptism by fire, baby.

Monday, April 02, 2007

Autism Awareness

April is here again. The month set aside to educate people on what I LIVE. Sometimes it gets a little old. No one gets it until they live it. But there I am being cynical. :-/

Get this - my little autistic informs me this morning that she has to wear her Bear's shirt tomorrow - because Mr. Mike said so - when I asked why she said because the bear is coming. What bear? Stanley. Stanley - you mean STALEY?? Yes. I look it up on the web and sure enough Staley is coming to JS tomorrow.

I had rec'd a paper from school about an assembly in the morning on Tues and if I wanted to bring J (he has afternoon school) but all I saw on it was that it was about physical fitness - blah, blah, blah - I swear it didn't say that STALEY was coming. So now, I need to beg off tomorrow. :-) I mean - Staley - this is serious stuff. :-)

On a different note - Friday they both go to Ms K's. J says this morning (after hearing this) I'll tell Ms K (and in a voice like - I'll let her know of the impending doom). It was funny.

So Bbk has proclaimed April to be Autism Awareness month. I got to meet Kimberly from ISA - she is so nice and extremely knowledgeable about all the government stuff going on. I don't know - it taxes my brain - plus I'm SO distrusting of EVERYONE in government. But it was really nice. Both her and B did a very nice job.