Tuesday, May 31, 2011
The Hubs: No one knows why some people have it, and then some people don't have it.
Audrey: Not even scientists?
The Hubs: Nope.
Audrey: Maybe that's what I can do when I grow up. I can figure out why, and help them.
Monday, May 30, 2011
This time JT chose to go down the aisles... and he had a particular one in mind. I was just following, when I realized where he was going.
Suddenly we're standing in front of a wall of diapers.
"Look! It's MY diapers!" JT said.
"Nope, you don't wear diapers. You wear underwear!"
"Nope. It's JTmy's diapers! See?" (pointing to a brand we had bought at one point).
I had to lead him away from his old friends, it was like a long farewell between them. No issues leaving (thank God), but since then he's been toying with the diaper idea... after getting out of the tub he informed me, "Need diapie shirt." When I reminded him we wear underwear, he said, "Nope. Wear diapie!" Then he told me mommy, daddy and sissy wear diapies, too (shhhh, don't tell Audrey, she would be FURIOUS that he would say such a thing ;) ).
Good thing he knows it's just a joke. No way another diaper is coming into this house unless it's on another kiddo's bottom!
Saturday, May 28, 2011
She asked where he was going, I told her.
Then she asked if he was going into the 'severely disabled class' (remember that Wake County schools segregate disabilities, so that would be the kids that need major modifications in curriculum and a separate classroom).
I said no, that he was going into CCK, that his teacher decided he didn't need curriculum modifications, since he had mastered a lot of the K curriculum as of right now.
"Really?!?!?!" was her response.
Granted, she hasn't spent a lot of time with JT. But still...
So because JT won't speak on command, and he has some odd mannerisms, it's shocking that he's intelligent?
Last night I was thinking about this. It goes WAY past the autism community. I'm sure parents of kids in wheelchairs, with any learning disability, with speech impediments, etc ALL understand completely what I'm saying.
For all the people out there with disabilities, please go one step further than "Don't judge a book by it's cover."
ALWAYS ASSUME INTELLIGENCE.
If you want to see a perfect example of why, please see Carly Fleischmann. She had no communication until the age of 11, when she typed the words 'hurt' and 'help' on the computer - astonishing everyone. They had *no idea* Carly was capable. Take a minute to watch the videos. Carly is clearly a very intelligent young lady, who was assumed to be mentally impaired.
From Carly on The Talk:
Carly (through computer): It's hard to be autistic because no one understands me. People just look at me and assume that I am dumb because I can't talk or act differently than them.
Again, I implore you:
ALWAYS ASSUME INTELLIGENCE.
That person who is physically disabled, the person who is mute, the person who can't act like you... show some respect. They are people who are just as likely to be intelligent as the rest of us.
Friday, May 27, 2011
That means we have to leave behind the best teacher and aides ever, and head to a new place where we hope our luck with teachers and aides continues.
He'll be at Reedy Creek Elementary in the CCK program.
Here's the Reedy Creek Elementary webpage.
Wednesday, May 25, 2011
Happy anniversary to my husband :)
9 years ago, I married my best friend in our backyard, with a 'best dog' and 'cat of honor'.
Since then, we've been through a lot. Several moves, two kiddos, job changes, autism... It hasn't always been easy, but it has made us stronger.
I love him even more today than I did 9 years ago.
He is my soul mate, and still my best friend.
Monday, May 23, 2011
It was his first time peeing there - yes, he's been potty trained for a few months, and had held it all day every day until Friday.
Not sure if he'll make a habit of it, but good to know if he's gotta go, he'll go potty there :)
Wednesday, May 18, 2011
I love this.
The Starfish Story
adapted from The Star Thrower
by Loren Eiseley (1907 - 1977)
Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.
One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.
As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.
He came closer still and called out "Good morning! May I ask what it is that you are doing?"
The young man paused, looked up, and replied "Throwing starfish into the ocean."
"I must ask, then, why are you throwing starfish into the ocean?" asked the somewhat startled wise man.
To this, the young man replied, "The sun is up and the tide is going out. If I don't throw them in, they'll die."
Upon hearing this, the wise man commented, "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"
At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, "It made a difference for that one."
Tuesday, May 17, 2011
Monday, May 16, 2011
Oh man, people tend to feel really strongly about this, even though it's not their kid and they don't have a clue what life with autism entails.
Reactions from those people have ranged from "Why would you consider meds?" (because of ASD related behaviors...) to "You know, you should make sure you have tried everything else first..."
I've spent the last 3 years avoiding them.
We've done ABA. We've had BIP's (behavior intervention plans). We have tried *everything*.
And you know... anyone who's met my son will tell you, he's doing amazing. He's a phenomenal little kid. He's sweet, smart, ornery and probably the funniest human being alive.
But these mood switches... wowza. He's like a freaking light switch, happy to furious in 1.25 milliseconds. He's mostly just into screeching, but occasionally we'll see him revert to clearing tables in a very dramatic fashion, or (this makes me cringe) even trying to swat his friends.
It has improved dramatically. He used to be uncontrollably aggressive. He is not anymore.
I see this as a sign that our interventions were very good - he learned to control what he could, and he tries so hard. But I think there comes a point when you have to say, "He needs help, and I can't give it to him." I'm having to accept that doesn't make me inadequate as a mother, that there may be things beyond therapies that I have to consider.
I put it off this long because I never, ever wanted to consider meds because they would make *my* life easier. I can deal with JT. I can deal with his explosiveness, his meltdowns, his 'flips'. It has come to the point, though, that those involved with him in the educational/therapy arena have noted that his behavior is the only thing holding him back from mainstreaming.
How sad would it be if my pride as a mother got in the way of his academic and social life?
The truth is, I asked around - his therapists, etc - to see what they thought... hoping they would say, "No, Kate. He's doing so great, he'll just grow out of this, too! No worries!" Instead, they felt the same way... "He's grown so much, but it appears he needs a little more help." They said that they felt medication would probably be a huge benefit for JT.
I just hate that the moment a parent suggests medication might help, they're demonized. I love my son. I want the best life for him.
Until the 'magic pill' comes along, I will combine therapies with whatever we decide with a doctor would best help JT.
I caught this quote today on an affirmation card, and it really hit home:
"What other people think of me is none of my business."
I need to post that card on my fridge, and use it as my mantra.
Saturday, May 14, 2011
It was at an indoor playground - with real playground sets and a bouncy house and a giant inflatable slide.
JT held my hand, going from the pieces of equipment. He played with me.
There were a few times he saw his sister, happily playing with her friend, and he tried to grab her hand. She wriggled free and ran off.
I almost cried, and my heart broke so fast that it took my breath away.
But I couldn't intervene.
Audrey loves JT. She really does. She plays with him all the time when it's just them. But it's not fair to expect her to drop everything and play with him. Kids her age don't do that - her friend wasn't playing with his little sister.
Yet I knew, as I watched his little face show disappointment and sadness, that it hurt him that he wasn't the center of her universe then. He ran around alone the whole time.
And then came the ending, 1.5 hours in, when I could tell JT was done. So Audrey had to get up, during the pizza (and before the cake) and leave. She cried. She insisted 'It's not fair.'.
Somehow, I am more brokenhearted after a birthday party that went better than any party we'd been to than the disasters we've experienced before.
It's one of those "FA" days that has me drained and broken, for both my babies. I agree with Audrey. It's not fair.
I loved reading the stories of my friends, and some of mine brought
I love it... Not just because we're in there... Not just because Val
is the most awesome person ever. I think it is a good read, and makes
people on this journey feel less alone.
Wednesday, May 11, 2011
Tuesday, May 10, 2011
Anyway, my dad found out, and (being the awesome papa he is!!!) he got one for JT! He ordered the bigger one, so JT will be able to use it for a really long time :)
It came today, and oh my gosh is JT on cloud 9.
He's been playing in it/laying in it/watching tv in it/reading in it all evening.
Here's where it is now :)
Monday, May 9, 2011
Yet I still have to stay on my toes.
I think many times, people unfamiliar with IEP's or special education assume that a good IEP means JT will automatically be set in school. He'll do great, the end. But that's not true at all.
A good IEP does not guarantee success. It provides him with the supports to do his best.
A good IEP does guarantee that pass or fail, JT will do it himself. He will, however, not fail because I didn't prepare for the IEP. He will not fail because of a teacher who is a poor fit. He will not fail because of anything but lack of ability on his part.
The same as any other kid, I just want him to do their best. Sink or swim, I will be proud. But I want it to be him - not anyone else.
So before he sets foot in a classroom, I know he will have that chance.
A good IEP requires work. If you're lucky like I was, it doesn't take much fight - but we're willing to do that, too. You have to prepare regardless.
I believe my son WILL succeed. I believe he's going to do great things. And his IEP will make sure he has the best chance to do it.
Thursday, May 5, 2011
JT is suddenly on edge, the past two days having 'episodes' at school. By episodes, I mean meltdowns or tantrums. Of course, the two are *completely* different, but strange that they crop up together. Traveling friends I suppose.
Then this morning, he was in a fantastic mood... suddenly flipping into a meltdown mess, completely inconsolable and irate.
These don't last a long time - maybe 5-10 min - and he's having 1 a day. But I'm still freaking out. There's always that panic... what if we stay here?
These behavioral backslides are common here... part of the autism 'dance'.
We move forward, then cha-cha back in an area, just to move forward again at some point. Always moving, sometimes forward, others backward, and sometimes things just shift left or right. But we're always moving.
I'm praying we figure out why Mr. JT is upset soon. Is it his sleep issues? The visitors last week? His allergic reaction to their dog he had then? Transition to new things? Growth spurt? Getting sick? I checked, no full moon to blame it on this time, so that's out...
Most likely we'll never know. The dance changes right as you start to figure out the steps.
I've never liked dancing much. I was a runner - point A to point B in the shortest amount of time = WIN! Dancing was a whole lot of steps just to get to an end... seemed like a lot of energy to burn to get to point B.
Yet here I am, dancing every day.
My feet are tired.
Wednesday, May 4, 2011
"There's a good chance he'll never talk," the diagnostic team informed me with sad eyes, in March of 2008.
-At 3 years 3 days old, JT proved them wrong.
"I doubt he'll ever potty train," I lamented frequently to my husband.
- At 5 years 4 months old, JT started using the potty, and never looked back.
Other 'never's' that turned out to be false:
- be able to go shopping with me.
- behave at school.
- care what I say.
- want to be around us.
- want friends.
- pedal a bike.
- have a favorite anything.
I suppose the single most important thing this journey has taught me is never say never.
Perhaps I should take these words to heart (from one of my favorite childhood movies, no less!):
From An American Tail Movie Soundtrack:
Never Say Never
"Never say never,what ever you do
Never say never,my friend
(But I real...)
If you be that,your dream will come true.
They will come true in the end.
Keep up your courage,don't ever despair
Take heart and then count to ten
Hope for the best
Work for the rest and never say never again."
"Never say never,whatever you do
Never say never to me
If you be,if you come shining through
That's how it's gonna be
Remember to look on the bright side
Until then never say never again."
Wiser words have never been spoken by a pigeon. Hat's off to you, Henri. :)
Tuesday, May 3, 2011
Tonight at bedtime I was trying to adjust the volume on his television. I accidentally hit the tv/video (input) button, switching Spongebob off.
I said, "Oh no, I screwed up!"
From his bed, JT huffed, "NO MOMMY!!! SCREW IT DOWN!!!"
That is, technically, the opposite of screwing it up :)
I thought about last year, The Hubs videoing Audrey's K graduation because I had to pick up JT and stay at home with him. There was no way he would have remotely behaved there. In fact, every 'celebration' of Audrey's we had to alternate last year so that one of us could go and one could be with JT.
Then I realized, this year is different. JT is doing a lot that he couldn't last year. We can go places, and he's fine.
I decided this year, he would go.
Fast forward to yesterday.
Audrey: Mom, we're working on a big project at school.
Me: Really? Your project for the end of year celebration?
Audrey: Yep. It's all about the most special person to us.
Me: That's a pretty cool project...
Audrey: Guess who I chose?
Audrey: I chose JTmy. It's all about him.
Of course, I was so excited - what an amazingly sweet moment... She loves, loves, loves her brother.
Then I got to tell her JT gets to come this year to her celebration. She was unbelievably happy. She's excited to present her special person project, to show him off to her friends, she's excited just because he gets to be there.
This qualifies as one of the most special moments in my life. My son can finally attend his sister's ceremony, and how fitting that her presentation was in his honor.
As far as the day of, The Hubs will have the camera, and I will be sobbing into tissues. But instead of crying because we missed another event, this time, I can cry happy tears.
Monday, May 2, 2011
It's not just that no one understands autism - it's that, literally, leaving your house is a nightmare.
JT would freak out anywhere we went. Grocery stores. Restaurants. Doctors offices.
We're talking, full-on meltdown, screaming, kicking, biting, fight-or-flight mode type stuff. Long gone, inconsolable stuff. People staring at you and whispering stuff. People outright saying things about my parenting, about how awful my son was (yes, I had, on more than one occasion, people out loud refer to my son as 'bad' or worse).
It broke me eventually.
It was hard enough getting him out, let alone braving the people who were so cruel.
Lately, though, a shift in JT - a HUGE shift - made me get back up and try again.
JT is awesome, that's what.
He goes shopping with me, no fits. He goes to the zoo, no fits. He goes to restaurants, no fits.
Not perfect behavior, but oh my goodness MANAGEABLE.
We can go out - as a family! - and have a great time.
I've signed up for those cute little Lowe's and Home Depot classes. We're planning family weekends.
I've never known what it feels like to do family things and just enjoy them... It's fantastic.
We all had SO much fun - it's a beautiful zoo, the animals have tons of space, and it wasn't too hot or busy that it was uncomfortable.
Some funnies and cool stuff:
JT caught a giant black ant. He named it 'my ant' (haha!!!) and carried it around all day. He eventually killed it (not on purpose), and was pretty sad 'mine ant dead'. He keeps telling us 'Ant at home, byebye mine ant.' and other funny things.
While looking at a lemur exhibit, JT found frogs. He was crouched on a bridge looking down on the other side, and started saying frogs and ribbit. It was really funny, he attracted a giant crowd of kids who apparently also felt that frogs were way cooler than ring-tailed lemurs!
He picked out a hat in the gift shop - as in, had to have it - and put it on the counter to pay when we were leaving. It was really cool to see him get that we had to pay, he would get it back, and then he could have it.
Also, about 1/3 of the way down, there's a pic of JT standing in front of a plexiglass money donation stand. He was saying "MY MONEY" and "Mr. Krabs' money" and then just "Money money money!!!" The kids coming in were cracking up!
A little after that, there's a pic of JT and Audrey climbing on one of those silver binocular pay-to-view things... JT was convinced that it was a robot. The eyeholes do look like eyes, and the center flat part looked like a nose. Too funny...
Here are a ton of pics... Check out the ones of JT with his ant (his hands clasped). He is one happy kid with his friend 'My ant' :)
Picasa pics: NC Zoo 5/1/11.