Happy Easter!
08 Apr 2012 1 Comment
in Uncategorized Tags: holiday fun, sweet memories
This picture is two years old, but it is one of my favorite shots of The Boy at Easter. He looks so sweet, with his hand on the bunny, and just amazed to be next to a bunny of that size. He also looks so small on that bench, with his legs sticking straight out.
I hope that you and your family are enjoying a wonderful Easter.
Godzilla vs. Rodan
07 Apr 2012 Leave a Comment
in Uncategorized Tags: autism, out in public
Well it was a battle of epic proportions today at the Stride Rite outlet store. The Boy and I stopped off to pick up a new pair of shoes for him. He was in a mood today and was very, very loud. He was slapping on the bench, playing drums and was very vocal. There was another little boy there who I think probably was also on the spectrum (what are the chances of that happening? Oh yeah, 1 in 88.). Unfortunately, unlike The Boy, he apparently wasn’t a sensory seeker and The Boy was clearly annoying him. I tried to shush The Boy, but wasn’t having much luck. The poor little guy was putting his fingers in his ears and wincing. Now The Boy was loud, but he wasn’t that bad. Anyway, The Boy and I found his shoes and got in line to leave as quickly as possible. As luck would have it, the woman in front of us in line couldn’t find her driver’s license so we had to wait…and wait. The Boy got louder and louder. Who should be behind us in line, but the other little boy. Finally he had had enough. “Your son is TOO LOUD!”, he told me.
The sad thing was that the person who could understand his issues the most was the one who was causing them. I tried to connect with the mom, but she had 3 kids with her and didn’t want to talk. Sorry, little guy, wherever you are.
At least it wasn’t the F-bomb
06 Apr 2012 Leave a Comment
in Uncategorized Tags: autism, mother of the year, warning! foul language
You need to know two things: first, The Boy’s Dad has the foulest mouth of anyone that I have ever known. Well, maybe that is stretching it a little. So I will qualify that statement and say that, with the exception of Ray “Bones” Barboni, Dennis Farina’s character in Get Shorty, The Boy’s Dad drops the F-bomb more frequently than anyone I know. In fact, I think that he says it so much that he isn’t even aware that he is saying it anyone. He says it so much that…well, you get the picture. I must admit that my own language could use some cleaning up, but I am a rank amateur in comparison.
The second thing that you need to know is that the parking lot that holds our family’s two primary shopping spots (Trader Joe’s and Whole Foods) is woefully inadequate for the number of customers that these two stores attract. Throw in a Peet’s coffee and you can imagine the traffic maze that presents itself every Saturday morning. And, as a working mom, that is usually the day that The Boy and I make our way there to stock up for the week. Things can get pretty tense; I have personally witnessed a confrontation over a parking spot that nearly came to blows. It’s a war zone.
So, it is with this background and setting that I tell you the following story.
A couple of weeks ago, The Boy and I were driving through the parking lot, looking for a space, and out of nowhere, a car shoots right in front of me, cutting me off, and stealing my spot. I had to slam on my brakes to avoid hitting it, and without thinking I exclaimed, “You Asshole!!” In the backseat, my little sponge, the guy who can barely say his own name, the one who rarely shows any interest in what’s going on in the front seat of the car, states clearly and sweetly, “Akshole!” Then he laughs. Then he says it again, “Akshole, Akshole!”
That’s right, after years of admonishing The Boy’s dad to watch his language in front of The Boy, I am the one who teaches The Boy his first swear word. Wow, I feel like an akshole.
Blue Light Special
02 Apr 2012 Leave a Comment
in Uncategorized Tags: 1 in 88, autism, light it up blue
Our porch light is blue, casting its light down our walkway. My husband pronounces it “eerie”, but I take comfort in its glow. An ancient Chinese legend speaks of a red thread that connects all of us throughout our lives. We, my family and many others, are connected by a blue thread – the thread of autism – and the light on our porch illuminates the change in the fabric of our lives that this thread has woven.
Four years ago my husband and I were given the news that our son was severely hard of hearing and that he would eventually become deaf. We looked at the CT scan and the doctor pointed out the tiny malformation in his inner ears that would cause this deterioration; each ear had a little hole that was smaller than a pinhead, but still larger than normal. As hard as that was to understand, it was a million times easier than the autism diagnosis that came almost a year later. A tiny little hole is tangible. It shows up on scans. Autism is as mysterious and confusing as the puzzle piece that is its symbol. Autism sneaks up on you when you realize that your once thriving 2 year old is no longer hitting any of his developmental targets. It hits you in the gut when you see your friend’s child, who is 2 years younger than yours, doing things that your boy can’t. It keeps you awake at night, from worry or because your child hasn’t slept a full night in forever. But autism doesn’t come with its own little identifiable hole. So you wonder. Was it something that happened during the pregnancy? Was it the immunizations? Was it something environmental? Is it genetic? But most of all, what you wonder is, “What can I do to help my boy?”
Last week the CDC released a study that reported that the incidence of autism in now estimated at 1 in 88; the number is even more staggering for boys; it is 1 in 54. Think about that for a moment: nearly 2% of boys born in 2000 (yes, that is how old the numbers in the most recent report are) fall somewhere on the autism spectrum. This is an increase of 78% in 6 years. And I’m sorry to tell you that the argument “the definition of autism has changed and that’s why the numbers are larger” doesn’t work any longer. The methodology used for this current study is the same as was used for the 2009 report which had a prevalence finding of 1 in 110. The increase is real and the implications are frightening.
At 1 in 88, we now have over 1 million children directly affected by autism. More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined. Yet despite this fact, funding for autism research lags well behind these diseases. According to numbers obtained on the Autism Speaks website, autism is nearly 6 times more prevalent that juvenile diabetes and 3.5 times more prevalent for pediatric AIDS, yet funding for research for these diseases are double and quintuple the amount funded for autism research, respectively. The federal autism research budget is the same now as it was in 2007. That means we are spending less for every case of autism now than we were five years ago. The federal budget has increased by a trillion dollars since 2007, rising from $2.8 trillion annually to $3.8 trillion. That means we are making proportionally less effort on autism now than 5 years ago.
Like the red thread in the Chinese tale, the blue thread of autism connects us all. It is estimated that autism costs the United States $126 billion per year. I have seen predictions that in ten years this number could increase to approximately $200 to $400 billion. It’s unsustainable. We can’t afford to do nothing. Please join me in urging Congress and the President to take this epidemic seriously and devote the funds necessary to unlock the puzzle. April 2 is Worldwide Autism Awareness Day, but the truth is that everyday is Autism Awareness Day and it is past time for action.
Wow, just wow!
26 Oct 2011 Leave a Comment
in Uncategorized Tags: autism, mom needs a kleenex, success!
Water is the only drink for a wise man. -Henry David Thoreau
There are so many things that autism takes away, it is sometimes hard to remember that the selfish bitch gives back once in a while. Today was one of those days.
I came home from work and there was a cup of water on the coffee table. The nanny told me that The Boy had been working on drinking from it. “He’s getting better,” she said. “He drank 1/3 of a cup and barely spilled at all.” I thanked her and The Boy and I walked her to the door.
It had been a long day, and by the time I got back to the family room, cups of water were the furthest things from my mind. But not from my boy’s. He looked at me and walked over to the coffee table. With a shy smile on his face, he lifted the cup to his lips and drank from it, without spilling a drop. I stared at him. “WOW!” I said. “M-wow!” he agreed. I refilled the cup. He drank. After every sip he would look at me and wait for my “Wow!” Then he would reply with his “M-wow. ” Finally, the liquid level fell too low and he spilled, trying to get the last drops. “Oh No!” he exclaimed, but not really upset. “That’s right, baby: ‘Oh no!’ But you’re ok, and you did a great job.” Blinking back tears, I changed his shirt and we went upstairs to get ready for bed.
He wanted to show me what he could do.
He did it!
He responded appropriately.
Take that, autism, you miserly biddy. What you can never understand is that the fact that these moments are so rare is what makes them infinitely more precious.
Four Little Words
17 Oct 2011 Leave a Comment
in Uncategorized Tags: autism, chocolate, talking
Sometimes miracles happen in the strangest places and under the strangest circumstances.
One happened yesterday.
The Boy is getting more and more vocal, but he isn’t doing what anyone would call “talking.” He will repeat a sentence, one word at a time, imitating: “I” “Aye” “want” “wha” “milk” “milk” “please” “peas”. He also sings along with parts of some of the songs on Sesame Street or Jack’s Big Music Show. He loves to announce “uh oh” when something falls. But mostly it is like pulling teeth to get him to talk and he doesn’t really seem that interested in the idea.
We were shopping yesterday and I picked up some chocolate (tomorrow is The Boy’s birthday and chocolate cupcakes are on the menu) and put it in the cart. Immediately The Boy starts signing “chocolate.” Well, he was being very good, and he did ask nicely, and his birthday is coming up, so why not? I went down the aisle where the chocolate bars are and opened one up and gave him a square. Down the hatch it went, with only a smudge on his cheek to prove it was ever there. Immediately, he signs for more. “Use your words.” I prompt. “I” “Aye” “want” “wha” “more”“mmmmOR” “chocolate” “chocklate”. Ok, one more piece. Gone as quickly as the first one; the face is getting a little more smudgy, but he looks so cute. Again, he signs for more. “No, baby”, I say, “that’s enough for now.”
And then it happened.
He didn’t cry or point or continue signing. He LOOKED ME IN THE EYES and SAID, “Aye wha mmmmOR chocklate.”
He got the rest of the bar.
Lawrence Kasdan has some explaining to do
24 Sep 2011 Leave a Comment
in Uncategorized Tags: autism, bath, reality check, stress
I blame it on the fact that The Big Chill is one of my favorite movies. It has a great cast, a fantastic soundtrack, and a good story. I saw it when I was in college and I thought that my life might turn out to be like Glenn Close’s (minus the dead friend, of course). I would marry Kevin Kline, who was not only successful, but also kind and funny, and I would have such a wonderful life and a generous spirit that I would loan him out as stud to my best friend.
But one of the most endearing moments in the movie has to be the scene where Kevin Kline is giving his son (a young Jon Kasdan, son of Lawrence) a bath, while they sing Joy To the World. That was going to be part of my fantasy life too: joyous bath times filled with bubbles and song. Alas, here I am 30 years later: no Kevin (sorry honey) and no big house with a football field-size lawn. I have lost touch with most of my college friends, and bath time is the most stressful time of the day.
I have just finished giving The Boy a bath and now I want a drink. The singing, of course, is out of the question, since The Boy is deaf in the bathtub (can’t wait for the Advanced Bionics upgrade to the waterproof cochlear implant processors). But that’s OK; singing is overrated. What I can’t stand is the constant struggle that takes place. The Boy wants to stim in the tub, which means he wants to sit up on his knees, arch his back and neck almost double and twist from side to side. As you can image, not a safe thing to do, and not something that I can allow. So, he tries to get up, I have to maneuver him back in a sitting position. Rinse and repeat, over and over, until I get tired of it and pull the plug. Don’t forget, he can’t hear me, so it’s a manual process to return him to a sitting position. By the time the bath is done, I am exhausted and he is far from relaxed and ready for bed.
A happy bath time: just one more thing that autism has taken from us. Hmm, I wonder if I can also blame autism for the fact that Kevin Kline married Phoebe Cates instead of me…
