Have a Happy & Safe Halloween!

Here's a few photos of our pumpkins and our carving/painting party. It was the first time that Bean had ever painted.

He was really concentrating. So cute!

I didn't know Abby knew how to draw/paint smiley faces until *BAM*

there was a smiley face on her pumpkin. What a fun surprise!

Her teachers say she loves to draw at school and when they have free-time, that's usually what she chooses to do. She comes from a long line of artists, so I shouldn't be surprised.

I've Been Thinking...

I do a lot of thinking. Maybe too much sometimes. It keeps me awake at night. But what I've been thinking about lately has got me reevaluating why I keep this blog. It all started with that poor little "balloon boy" and the supposed hoax orchestrated by his father. Then I started thinking about that show on TLC, Toddlers & Tiara's and that got me thinking about the whole OctoMom thing. Maybe not the most seamless stream of thought, but I'm not a professional.

What do I have in common with these people? Not much, really. Other than that we all have children and we all put our kids on display. I like to think that I'm not in the same category as these people. I'm not fake-crying on the news about my not-missing-so-much-as-hiding poor, exploited kid. I'm not making Abby get a spray tan and her teeth whitened so she can earn that big sparkly crown. I'm not giving birth to 8 kids (THANK GOD) and then talking about it all over tv with enormous, collagen injected lips. But I am writing a blog about and posting pictures of my daughter on the Web. Is it any better?

Sure I tell myself that it's my way of raising awareness about the Autism epidemic. I make efforts to keep our specific location a secret, but I know that it's not hard to figure out our general vicinity. I use caution when I choose the photos I post, not wanting to show anything too specific to our home or town. Am I exploiting my daughter? Writing this blog has been so therapeutic for me. Not only does it allow me to share our story, but I work through some of my least proud parenting moments and then am able to reflect and find the good in each experience we have.

And the most wonderful part of writing this blog is all the great feedback I get from all of you! I've made a wonderful blogger friend who I seem to have a lot in common with. And I'm increasingly blessed by the comments I get from parents of "typical" kids, because I'm reminded that parenting is the most challenging blessing we've ever been bestowed whether our kids are "special needs" or not. And all of these things are good and noble, but when I'm really honest with myself... I write this blog for me. I hope that it helps other people, but at it's root, it's all about me. So why isn't it filled with photos of myself? Am I exploiting my child for my own personal gain no matter how noble my intentions? I don't know.


So today... I'm posting a photo of myself. This is me and while I write about my daughter, Abby the Gentle Giant, this blog is all about me, me, me and my quest to be the best mom I can be. Should I be writing a blog about it?

Maybe I should only post photos like this zoomy accident of both Abby and I.

1 in 91

National Children's Health Survey Report Finds

Autism Prevalence Now 1 in 91
Monday, October 5, 2009
By: Carin Yavorcik

Autism Society Calls for Answers to Crisis Now

A national report released today in the journal Pediatrics reveals that 1 percent of U.S. children ages 3-17 have an autism spectrum disorder, an estimated prevalence of one in every 91 children. This is a dramatic increase from the one in 150 prevalence rates currently reported.

“This national study charts a dramatic rise in the prevalence of autism in the United States and we applaud this administration’s recognition that autism is an urgent public health priority,” said Autism Society President and CEO Lee Grossman. “But families today are asking: how high must these prevalence rates rise before the nation responds? Significant resources must be directed toward screening and diagnosis, affordable interventions that treat the whole person and comprehensive education plans to foster lifelong skill development so that people with autism will have the ability to work and live independently.”

The report, entitled “Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US,” published in today’s issue of Pediatrics, was conducted by the Department of Health and Human Services National Survey of Children’s Health, using data from the Centers for Disease Control and Prevention. The report was conducted via a telephone survey of over 78,000 parents, and determined a point prevalence of 110 per 10,000 respondents, roughly 1 percent of the population of children in the United States.

On a constituent call to discuss the report, the CDC reported that its initial analysis of the Autism and Developmental Delay Monitoring project data, due out later this fall, confirm the 1 percent figure. This report will also contain more data on age of diagnosis, groups affected, and access to interventions.

The increasing numbers have long-term economic costs to the country, as autism is a chronic medical condition affecting people across the lifespan. “Lifespan services, particularly for adults, are typically inadequate and inappropriate,” Grossman stated. “This new data should be a call to action to the government to improve and increase services and supports first.”

The Autism Society has been working with Congress on several key bills, which have stalled. “The information in this new report highlights the pressing need for additional services, support and treatments for families affected by autism spectrum disorders,” said Senator Dick Durbin (D-IL). “My bill, the Autism Treatment Acceleration Act, will help children and adults with autism gain better access to coordinated services, improve training for professionals treating these disorders, and will relieve the financial burden on the millions of families struggling with this disability.”

This bill, if funded, would provide funding for applied research into effective interventions, the first ever demonstration grants on adult services, create an adult prevalence study, and fund family support and information networks.

“Autism affects millions of American families, and the cost of diagnosis, early intervention, and treatment imposes a heavy burden on most of them,” said Congressman Mike Doyle (D-PA), co-chair of the Congressional Autism Caucus. “This legislation, the Autism Treatment Acceleration Act of 2009, would improve the dissemination of information between autism researchers and service providers, improve training for professionals treating autism spectrum disorders, and mandate that health insurers cover the diagnosis and treatment of autism spectrum disorders. Enactment of this legislation would do a lot to help millions of American families.”

“The increase in the reported prevalence of autism across the nation testifies to the urgency of executing a comprehensive strategy in response to this public health emergency,” said Congressman Chris Smith (R-NJ), co-chair of the Congressional Autism Caucus. “For its part, Congress must ensure robust funding to support aggressive programs of research, education, and services. Furthermore, Congress needs to enact additional legislation, such as the Autism Treatment Acceleration Act of 2009, that will establish the infrastructure and mechanisms for delivering appropriate services across the lifespan to individuals with autism and their families. We must look to maximize the reach and impact of our investments and activities by closely coordinating government efforts with those of national advocacy organizations, such as the Autism Society.”

(click the title to take you directly to the article)

The Symphony- Take One

We are music fans in this house. All types of music.

From Tchaikovsky to Tori Amos.
From Miles Davis to Metallica.
From Bocelli to Radiohead and so on.

We love it all.

Abby goes to sleep each night listening to They Might Be Giants' Here Come the 1-2-3's. God forbid something ever happen to that cd. The earth might implode. But that obsession is for another blog posting.

Once while playing with Play-doh and listening to the Opera music station that is part of our cable package, Abby suddenly stopped during a particularly melancholy part of the song to listen. Her breath caught and her eyes welled up with tears as the music crescendoed (is that a word?). She was overcome with the emotion of the song. (Does she speak Italian?) She took a deep breath and then proceded with her Play-doh sculpture. When I remembered to tell her Dad about it a couple of days later, he said she'd done almost the exact thing one day while playing with blocks and listening to Classical music. This shouldn't surprise me. Classical music makes me cry, too. It's just sooo beautiful! It makes my heart feels like it's going to explode.




We were recently gifted (thank you, D & M) season tickets to our local symphony and when Ab's dad was going to be out of town for the first concert of the season, we thought we'd try to take Abby to see the show, Beethoven's Ninth. Now we knew this was a risky venture. I prepared myself to leave early and prepared Abby by telling her,

"The music is going to be loud, but we have your ear plugs and you can hold your hands over your ears if you want to."

"It's going to be dark, but it's just like the movies and you will have your blankie snuggle and Mama will be sitting right beside you. You can sit on my lap if you'd like."

We bought her a new dress and new tights, which she adorably calls "pants socks". We got all dressed up and loaded into the car. As we were walking toward the Frauenthal Theater, I pointed out the lights on the building and Abby put a little more spring into her step. As we got into line, all the old ladies "ooohed" and "awwwwed" at my cute little girl. Men gave us skeptical looks, but smiled anyway and Abby exclaimed, "This is so exciting!" My heart melted.

We made our way to our seats and sat down. I tried preparing her by whispering everything that was about to happen into her ear. The lights dimmed and the concert master, Jenny Walvoord, entered the stage. Abby sat up straight and clapped enthusiastically with the rest of the audience. "The conductor will come out next.", I whispered. And when Scott Speck made his entrance, she clapped again. She looked so grown up and excited!

The lights went dark. I felt Abby get nervous beside me. I gave her her blankie and a snack and kept my hand on her knee to let her know I was there. Then the music started. And Abby panicked. It was so loud and the sound resonated deep in our bodies. It was more than she could handle. She was in the early stage of a full-blown meltdown. We hurried quickly out of the theatre and into the hallway. I tried to convince her to listen to the music in the hallway and then try again at the intermission, but she was having none of it.

"The symphony is scary!" she told me.

Oh my. Well I hope she doesn't feel that way when we try again next year or the year after. I thought she'd make it through at least a few songs, but oh well. I'd prepared myself for it. On the way home she said, "Thank you for driving me in the car to the sympony, Mama." I think she just enjoyed getting all dressed up and going to the symphony, even if we didn't stay for the show. It was worth it for me. And apparently it was for her, too. And besides... she loves her new "pants socks".

School and Some Small Miracles

Sorry it's been so long since my last post. I really need to just schedule time to do this. Abby started school a week and a half ago. She is going in the afternoons this year and that has been a bit of an adjustment for us. She gets antsy waiting for the bus and I feel like it's near impossible to make plans for the rest of our day, because smack dab in the middle of it all, I have to be home to get her on the bus and then 3 hours later, be home to meet her off of the bus. I've already had to make 2 emergency calls. One to my father-in-law, "Can you hurry to our house (20 min away) to get Ab off the bus?" and one to the bus depot, "Can you switch up your route today and drop Abby off ten minutes later?" I was stuck in road construction which is EVERYWHERE right now. Ugh! I'm sure they just LOVE me. The frazzled mom, still in her pjs at 1 pm, helping her kid onto the bus. Or I'm running behind (as usual) and making everyone else work around it. Will I ever get it together?! I keep trying.


Well enough about me. Abby is doing great in school. She comes home happy each day. I really like her teachers and thankfully, so does Abby. She talks about them at home quite often. She likes to say that she is going to go on a picnic with them and then list what foods she'll take. I mentioned in my last quick post that she's been babbling talking a lot lately. Most of the time it's AMAZING, but often it's the same story over and over and over again. Like the picnic. There are only so many times in a 2 hour span that I'd like to have that conversation, but if Ab's stuck in that storyline, we talk about it for two hours. At least.


We did have a communication exchange the other night that blew my mind! We were in their bedroom and I was about to change Bean's poopy diaper, when Abby said, "NO! It stinks! Better change it in the kitchen." Now for someone with typical kids, this isn't a big deal. It's a logical request (except that we don't change diapers in the kitchen normally). But for those of us who have been dying for some sort of communication from our children for a long time now, this is AMAZING!!!

She 1) expressed her opposition to the situation with words and without screaming, then she 2) expressed why she was opposed and then she 3) suggested a solution to the problem. I was thrilled! Now that is communication, Baby! And of course, Bean and I went into another room to change his diaper. YES! There appears to be a light at the end of this tunnel.

This last picture is of Abby's little brother, Bean, on Ab's first day of school. He was so upset. There was nothing I could do to make him happy that day. This photo was taken after I'd tried EVERYTHING and finally resorted to giving him his pacifier, blankie and put on a movie for him. He was so mad at me, I'm guessing he missed his sister, that he refused to come out of the doorway. He could see a sliver of the tv and this was as close as he would come to the living room... and me.

Very Quickly

Super short post for the time being. I'm hoping to find time to sit down and tell you more this evening or tomorrow.

Abby is chattering NON-STOP today! NON-STOP! Is she even taking time to breathe? It's amazing and I'm so thankful for her words, but seriously... wow! Breathe, Abby, breathe!

A Little Light Reading

Abby often checks the mail with me. Well one day last month sometime, she checked it on a day when I got my weekly TIME magazine. She promptly grabbed the mag, ran for a lawn chair in the back yard and "read" the entire magazine. She was so engrossed that I had to grab the camera and document the moment.

(reading about the mortgage crisis)

She often chooses to listen to the news over music on the radio. And if she is trying to butter me up, she'll ask, "Wanna watch the news, Mama?" She can identify & name Barack Obama and Hillary Clinton, whom she calls "Hillry Chicken." I wonder if our Secretary of State would find that as cute as I do. And for the record, I always correct her pronunciation.

Propping my Chin Up

I'm feeling a little discouraged today, but I'm really trying to not let it get me down. Abby has made such progress in so many areas and yet I've noticed a little regression in others. I may have mentioned before that she is talking so much more this Summer. It's truly amazing. Just a few minutes ago, she suggested I turn off the lamp since the overhead light was on, because "it's too very shiny in Abby's eyes." And there are times that I can't keep up with her chattering. I really do love it!


I posted a while back about how Abby would let me do some pretty intricate hair styles. I also mentioned that maybe we would go get her hair cut for her 4th birthday. Well the best ideas often do not come to pass. Sometime this summer (I've blocked out the exact month and day) as I was getting Abby dressed and doing her hair, I discovered that she had gotten some tree sap in her hair the day before. It was a HUGE glob and there was just no getting it out. (Since this time, I've re-discovered the miracle of Goo-Gone) So I was forced to cut her hair. This freaked me out, which in turn freaked Abby out. Her hair cut turned out cute, which is nothing shy of a miracle, but now I can barely brush her hair without a scream fest and much anxiety on her part. Gone are the days of pretty braids and relaxing mother-daughter hair styling sessions. I have faith that they will return, but "when?" is the question.

We also made the mistake of introducing flash lights to bedtime. We thought it would be fun, but little did we know the chaos that would ensue. Abby has never been afraid of the dark. And yet with the introduction of flashlights to the routine, suddenly she wants two lamps, two nightlights, her flashlight, her GloWorm and her Moon Light. After all that, we may as well turn on the overhead light. We obliged some of this behavior for a while. Turning off each light one-by-one over the first 20 minutes of bed-time, eventually leaving only her nightlights and flash lights. But then she'd fall asleep with her flashlight on and if we forgot to sneak in and turn it off, it would run out of batteries. Then we'd wake up at 3-4:30 AM to Abby SCREAMING her head off, because her flashlight was out of batteries. And the screaming would only stop once the batteries were replaced. Well... I've had enough of that! All flashlights have been removed from the situation. No more flashlights at bedtime. Last night was the first night without them and it went well. Fingers crossed that the quiet nights continue.

The scream-fests that Abby is famous for had really subsided. It was so nice & encouraging. Now we've had to experience quite a few this last week or so. We had one first thing this morning actually, because I wasn't ready for bright over head lighting at 7:30 AM (it's too very shiny in Mama's eyes... haha!) and only had the lamp on in the family room. She FREAKED OUT because she wanted all of the lights on. I sent her back to bed and told her she could get up when she was ready to interact with the family without screaming. What a great way to start the day. Ugh!

So I am propping my chin up and carrying on. What else can I do?

Milestone

We have reached 25 followers! Yay! A little Milestone for us at The Gentle Giant. Thank you and welcome to Gloria who rounds us out nicely. I'm so thankful to all of you who read about our adventures. This is so therapeutic for me.

Let's see... what can I share today. Abby has been reading an old book of mine from when I was a kid over and over and over again. It's a book about Donald Duck taking his nephews (Huey, Dewey & Louie) camping. So her dad mentioned that maybe we would go camping in our backyard this week. I am going camping in Washington State at the end of the month and we should probably get out our much neglected gear anyway to check things out. Well now Ab is obsessed. She can't stop talking about the "purple tent". It goes something like this...

"Abby, would you like a drink?"
"I want my Daddy... blah, blah, blah... purple tent."

The blah, blah, blah is the rambling parts that I still have a hard time deciphering. Abby's language skills have really blossomed this Summer. She is still using echolalia a lot, but more and more it is accompanied by her own original thoughts and words. If we can decipher what she is saying.

One of the great ironies in being Abby is that her volume levels are completely askew. When she is frustrated or angry, she can emit a scream that will make your blood curdle and your ear drums crawl farther into your head, begging for relief. And yet when she is blessing you with the oh-so-sweet-and-elusive conversation, she speaks so softly and quietly, that you often have to be right next to her to hear it. If only I could wiggle my nose ala Samantha on Bewitched and swap these two volume levels. While I'm sure I would eventually find myself annoyed by having to listen to her talk at blood curdling level, I would LOVE to have her screams of frustration and anger at a barely audible, newborn kitten level. If only for a week. It would be lovely.

Another topic she is talking about lately is school. She is soooo excited to go back. I'm excited for her, too. She absolutely thrived the last 6 months of the school year. I'm so excited to see the changes that will surely take place this next year.

Wearing her brother's sunglasses while taking a walk on the boardwalk. She is wearing a pair of "binoculars" around her neck that I made for her using empty toilet paper rolls, a couple of index cards, curling ribbon and tape. She uses them to go bird watching. LOL! The striped belt is one of hers that she carried around for a few days. She would twirl it and dance like a gymnast during a floor excercise with ribbons.

Geography

Quick post today due to the fact that I have a long to-do list and while it does include,
*Lay on the couch and watch a movie,
it does not include, *Blog.
But I just had to share another of Abby's milestones that
blew my mind a little bit.

We went to the post office today and the clerk gave the kids a couple of stickers. One of them happened to be of a globe with the continent of Africa emphasized. I handed the sticker to Abby without an explanation or saying anything about it at all.

Later, as I was making lunch, Abby called my attention to the sticker. I asked her what it was and she said it was "the world" then added "It's Anafrica." When I corrected her by asking, "Is it Antarctica?", because that's what I thought she was trying to say, she answered,
"No, it's Africa."

Clear as a BELL!

Wow! She can identify the continent of Africa. Without even seeing it in context with the rest of the globe. She just knows its shape. Amazing! It is days like today that give me so much hope for the future.