Undercover Minority

It's amazing how far being cute will get you.

Often when I mention EJ's autism to someone, I get a response like, "Oh! I couldn't tell..." (in addition to all the "so sorry's" and the scrunched pity-brows). I usually put on a smile, while silent E says, "Tell me, what is an autistic kid supposed to look like?"

There is no such thing as better. Just different.

Guess who?

I transferred the pictures from my camera's card to the computer the other day. It mysteriously took forever! Why?


I found about a hundred of these:



with this at about number 96:

EJ has discovered the camera.

The Most Beautiful Sound In The World

Obby.

that's me :)

ASD GF/CF MSGAF WTF

Nothing makes you feel important like an acronym. (read: sarcasm)

I usually cringe at acronyms these days, because in the autism world an acronym usually masks yet another complex concept that I'll need to integrate into my existence.

Take the GF/CF MSGAF diet. That all means: gluten free/casein free, monosodium glutamate and aspartame free diet.

Here's the theory in the extremely simplified mE-version: gluten, casein, and msg all break down in the body into a protein that the autism brain misreads as morphine. (Aspartame is just evil and shouldn't be in anyone's diet.) Eliminating the offending foods from the diet will eventually detoxify the body and eliminate the addiction in the brain.

Rather than list the foods EJ cannot have on this diet (who has time for that?) I'll list what he can have:
meat
fruit
veggies

Considering EJ's diet consisted of only 7 foods prior to this, he is down to basically apples only.

Oh, and marshmallows.

Sound of Silence

It was quiet. Too quiet.

I ran to check on EJ. He's perfectly fine, watching his favorite Sesame DVD.

With the sound off.

Hmm. I watch this for a while, and some things start to click: he's pointing to the words that flash on the screen. He understands that the letters are forming words. He is trying to say the words (he has this DVD memorized).

He was having sensory overload, and wanted to concentrate.

Every little decision opens him up just a little more.

Tricky Fishy

At 3 am, I was awakened by a hauntingly familiar sound: EJ was awake.

It has been over 2 weeks of the dairy-free diet, and he's slept through every night. I was practically in tears when I said to my husband "I just don't understand. Maybe it's not the dairy at all."

"Something must have....." he froze. "Cheddar Goldfish. I checked his school snack today for chocolate, but forgot about the Cheddar Goldfish."

If I hadn't been delirious with tired, I might have done a happy dance. The diet is working!!

Up next: GF/CF. this stuff ain't for lightweights.

Don't judge a book by its bureaucratically dysfunctional cover

If you are the parent of an autistic child in NJ, the good news is that the state has implemented a preschool program specifically for autistic children. The bad news is that it's implemented by the state.

It took 4 months before we finally had a meeting with the child study team. There were about 10 people in attendance (who are these people?) and at times I practically had to stand on the table in order to get a question answered. They didn't even let us see the classroom. I was hopeful when the director said "We want to get him in here as soon as possible"- but as soon as possible in state-speak turns out to mean 6 weeks. I walked out of there with serious bad-bellies. Is my son going to be preschooled at the DMV?

A week later we had the classroom visit.

We sat in the corner and watched these little miracle kids singing and talking about the weather, and it just made me well up with emotion. The classroom setup was great- 3 teachers and 3 kids (EJ would be number 4). The teachers seemed super nice and eager to help the kids to grow, not simply function. The teachers gave us tons of info on how they derive their curriculum and I feel confident that they would tailor Elijah's days to what would be best for him. I left feeling lifted and positive, and really looking forward to when EJ can finally start.

I love pleasant surprises :)

Guilty Momscience

I wonder what the statistics are on how many autistic kids never had a 3rd birthday party.

got Ricemilk?

We are on week 1 of the non-dairy diet. There's nothing like an experiment without a control group. Is his sleep getting better, or am I just wishful thinking?

I am shocked to see how many ways dairy products can sneak their way into a person's life. Luckily, the transition from M&Ms to Gummy Bears has gone smoothly.

A world apart

When I first felt ready to open a book on autism, I combed through the medical and child-rearing sections at the local bookseller. I found 2 books.

How could that be?

Weeks later, when I was wandering around looking for horse books, I stumbled upon a crowded end shelf: "Special Needs". It was shoved somewhere in between school workbooks and dog training.

I got up on my tiptoes, so as to see across the abyss to the books on cancer and pregnancy and terrible twos.

So that's how it is.


I did buy Jenny McCarthy's book Louder than Words. Good stuff. bring kleenex.

A horse, of course

my stubborn Dilly

I've been working with Dylan since the spring, and I have to say I just love this guy. Life is good.

The other day, I took a break from chores to walk over and give him a good morning scratch. He greeted me, mouthed around my hand, and proceeded to take a good bite.

ouch.

I went back to work, trying to massage that finger out. It had already been practically broken that morning by Elijah, who was trying to pull my finger toward some cookies on a shelf. What was Dylan playing at? He knew my finger wasn't a goody- his sense of smell is great. I looked over at him, standing in front of the gate that goes out to the fields.

standing in front of the gate that goes out to the fields . . .

!

the messages are loud and clear. we just need to be open to receiving them.

The Great Link

As soon as Elijah crossed over the dunes and saw the ocean for the first time, he ran to the water's edge and raised his arms up over his head. It's me, Elijah. I'm home.

Some things are bigger than our understanding, but can still fill us up with love.

Locutus

photo courtesy of EGI.com

We sailed through about 36 minutes of the dense array EEG at the neurologist yesterday. Not bad, considering 21 is minimum and 41 is ideal. The baby may look like it's been assimilated, but this dense array method beats the previous one (which involved scraping the outer layer of skin off the head). Ahh, technology. We just slipped on the net and sat and watched the IMAX Greatest Places dvd... until the strobe light segment of the test. That's when EJ decided it was time to go.

39 and a half Winks

I like sleep.

I decided that at 4:30 this morning.

Not only do I like sleep, I am heartbroken to finally understand that my sleep schedule is really no longer my own. If EJ decides 4 am is a good time to wake up and play, I'm up.

Sleep when your baby does. it's really ok.

Contact

Contact is one of my favorite movies. Jodie Foster, Matthew McConaughey, Carl Sagan... good stuff.

One of the pivotal moments in the movie is when the solution to a puzzle reveals itself only when viewed in 3 dimensions. silly humans.

I feel like every day new perspectives are emerging in me about myself and EJ. New dimensions reveal themselves. We are starting to get through to eachother, and I feel like he's willing to give a little.

He really is just like you and me. He just has different priorities.

The Alligator King

One, two, three, four, five, six, seven.
Said the Alligator King to his seven sons I'm feelin' mighty down. Whichever of you can cheer me up will get to wear my crown.

And so it goes. and goes. I've listened to the "Alligator King" for 20 minutes now, different segments of the song looping countless times, fast forwarded and rewound again like a complex solution to a combination lock... the lock on the door into my son's world.

I watch him, his fists tightened with excitement, tiptoeing closer to the TV and then back away again. And then, finally, he receives the secret signal from the King... he skips ahead.

Take a breath. Take a breath. Stop and smell, sniff a sniff, take a breath.

I give my son about an hour of Old School Sesame Street (or IMAX Deep Sea or...) in the evenings. He has free reign on the controls, which he figured out how to work an hour after we plugged the new tv in. I struggle with this. Is this good? He loves it, and seems engaged. I feel like it's ok, but I doubt myself. Some experts and know-betters think this a bad idea. But I hear him later, as he points to our tower of blocks

da, do, dee, da, da, da, sada.

trust yourself. know your kid. Take a breath.
It's all good.

For Elijah

and for me.