Just Sleep

Little Bug's quality of sleep has sucked more so than usual recently. The way I explain it to people is that, as far as sleeping through the night goes, we still have a baby- a very big and mobile baby, but a baby none the less. He wants to be cuddled and soothed and rocked. He wants to be close to you so he can twirl your hair. He wakes up crying. It is exhausting.

I wish there was something we could do. We are trying the weighted blanket, and while it helps him sleep deeper when he uses it, he often takes it off. It seems like he can only tolerate it for a couple hours at a time and then wants it off. He is still sleep talking and crawling. Not quite sure what to do about that- I guess, there really isn't a whole lot we can do.

We heard from his OT yesterday. She had faxed his treatment plan to our pediatrician's office twice, but didn't receive a response. When I called his office, we were told they didn't get anything and that he goes on vacation for two weeks as of Friday. So DN and Little Bug are going to to pick it up and take it to his office.

Hopefully, once we get that rolling, we can address his sleep issues. We are really reluctant to do any medicinal interventions, so we are hoping that we can help him in other ways. Till then, we will continue to be zombies- formerly known as his parents.

Ee Ee Yumpy Shark!

Little Bug said his first sentence last night since his regression in both sign and speech. His last sentence was at 11 months- I DID IT! He has lost a lot of language since then- he tested at 9 months of development for both receptive and expressive speech. But, he has made a ton of progress.

One thing that has helped his progress is his obsessions. Although he doesn't have a lot of language, he talks about them constantly. The first thing out of his mouth in the morning and the last thing before he goes to sleep is SHARKS! He also loves fish and trains. They work for us as we can make them incentives. So much so that we have thought of making him a shirt that says- WILL WORK FOR FISH. Last night, we were watching a Discovery Channel special about the sharks off of South Africa that jump during predations against fur seals. The shark got the seal and Little Bug yelled- Ee ee Yummpy Shark!!!!! Which, when translated, means Eat, eat jumping shark! He signed while saying it.

Another development we had yesterday was colors. We know he knows his colors- he can match them, etc. but getting him to name them or point to a specific color has never happened due to his language delay. He was 4 for 5 last night on matching! He also demonstrated quite a few new signs:

Red
Green
Orange
Walk
Shark

New Words:
Yump- Jump
Ru- Red

Yes We Can

Hello, Chicago.

If there is anyone out there who still doubts that America is a place where all things are possible, who still wonders if the dream of our founders is alive in our time, who still questions the power of our democracy, tonight is your answer.

It's the answer told by lines that stretched around schools and churches in numbers this nation has never seen, by people who waited three hours and four hours, many for the first time in their lives, because they believed that this time must be different, that their voices could be that difference.

It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Hispanic, Asian, Native American, gay, straight, disabled and not disabled. Americans who sent a message to the world that we have never been just a collection of individuals or a collection of red states and blue states.

We are, and always will be, the United States of America.

It's the answer that led those who've been told for so long by so many to be cynical and fearful and doubtful about what we can achieve to put their hands on the arc of history and bend it once more toward the hope of a better day.

It's been a long time coming, but tonight, because of what we did on this date in this election at this defining moment change has come to America.

A little bit earlier this evening, I received an extraordinarily gracious call from Sen. McCain.
Sen. McCain fought long and hard in this campaign. And he's fought even longer and harder for the country that he loves. He has endured sacrifices for America that most of us cannot begin to imagine. We are better off for the service rendered by this brave and selfless leader.

I congratulate him; I congratulate Gov. Palin for all that they've achieved. And I look forward to working with them to renew this nation's promise in the months ahead.

I want to thank my partner in this journey, a man who campaigned from his heart, and spoke for the men and women he grew up with on the streets of Scranton and rode with on the train home to Delaware, the vice president-elect of the United States, Joe Biden.

And I would not be standing here tonight without the unyielding support of my best friend for the last 16 years the rock of our family, the love of my life, the nation's next first lady Michelle Obama.

Sasha and Malia I love you both more than you can imagine. And you have earned the new puppy that's coming with us to the new White House.

And while she's no longer with us, I know my grandmother's watching, along with the family that made me who I am. I miss them tonight. I know that my debt to them is beyond measure.
To my sister Maya, my sister Alma, all my other brothers and sisters, thank you so much for all the support that you've given me. I am grateful to them.

And to my campaign manager, David Plouffe, the unsung hero of this campaign, who built the best -- the best political campaign, I think, in the history of the United States of America.
To my chief strategist David Axelrod who's been a partner with me every step of the way.
To the best campaign team ever assembled in the history of politics you made this happen, and I am forever grateful for what you've sacrificed to get it done.

But above all, I will never forget who this victory truly belongs to. It belongs to you. It belongs to you.

I was never the likeliest candidate for this office. We didn't start with much money or many endorsements. Our campaign was not hatched in the halls of Washington. It began in the backyards of Des Moines and the living rooms of Concord and the front porches of Charleston. It was built by working men and women who dug into what little savings they had to give $5 and $10 and $20 to the cause.

It grew strength from the young people who rejected the myth of their generation's apathy who left their homes and their families for jobs that offered little pay and less sleep.
It drew strength from the not-so-young people who braved the bitter cold and scorching heat to knock on doors of perfect strangers, and from the millions of Americans who volunteered and organized and proved that more than two centuries later a government of the people, by the people, and for the people has not perished from the Earth.

This is your victory.

And I know you didn't do this just to win an election. And I know you didn't do it for me.
You did it because you understand the enormity of the task that lies ahead. For even as we celebrate tonight, we know the challenges that tomorrow will bring are the greatest of our lifetime -- two wars, a planet in peril, the worst financial crisis in a century.

Even as we stand here tonight, we know there are brave Americans waking up in the deserts of Iraq and the mountains of Afghanistan to risk their lives for us.

There are mothers and fathers who will lie awake after the children fall asleep and wonder how they'll make the mortgage or pay their doctors' bills or save enough for their child's college education.

There's new energy to harness, new jobs to be created, new schools to build, and threats to meet, alliances to repair.

The road ahead will be long. Our climb will be steep. We may not get there in one year or even in one term. But, America, I have never been more hopeful than I am tonight that we will get there.

I promise you, we as a people will get there.

There will be setbacks and false starts. There are many who won't agree with every decision or policy I make as president. And we know the government can't solve every problem.

But I will always be honest with you about the challenges we face. I will listen to you, especially when we disagree. And, above all, I will ask you to join in the work of remaking this nation, the only way it's been done in America for 221 years -- block by block, brick by brick, calloused hand by calloused hand.

What began 21 months ago in the depths of winter cannot end on this autumn night.
This victory alone is not the change we seek. It is only the chance for us to make that change. And that cannot happen if we go back to the way things were.

It can't happen without you, without a new spirit of service, a new spirit of sacrifice.

So let us summon a new spirit of patriotism, of responsibility, where each of us resolves to pitch in and work harder and look after not only ourselves but each other.

Let us remember that, if this financial crisis taught us anything, it's that we cannot have a thriving Wall Street while Main Street suffers.

In this country, we rise or fall as one nation, as one people. Let's resist the temptation to fall back on the same partisanship and pettiness and immaturity that has poisoned our politics for so long.
Let's remember that it was a man from this state who first carried the banner of the Republican Party to the White House, a party founded on the values of self-reliance and individual liberty and national unity.

Those are values that we all share. And while the Democratic Party has won a great victory tonight, we do so with a measure of humility and determination to heal the divides that have held back our progress.

As Lincoln said to a nation far more divided than ours, we are not enemies but friends. Though passion may have strained, it must not break our bonds of affection.

And to those Americans whose support I have yet to earn, I may not have won your vote tonight, but I hear your voices. I need your help. And I will be your president, too.
And to all those watching tonight from beyond our shores, from parliaments and palaces, to those who are huddled around radios in the forgotten corners of the world, our stories are singular, but our destiny is shared, and a new dawn of American leadership is at hand.
To those -- to those who would tear the world down: We will defeat you. To those who seek peace and security: We support you. And to all those who have wondered if America's beacon still burns as bright: Tonight we proved once more that the true strength of our nation comes not from the might of our arms or the scale of our wealth, but from the enduring power of our ideals: democracy, liberty, opportunity and unyielding hope.

That's the true genius of America: that America can change. Our union can be perfected. What we've already achieved gives us hope for what we can and must achieve tomorrow.

This election had many firsts and many stories that will be told for generations. But one that's on my mind tonight's about a woman who cast her ballot in Atlanta. She's a lot like the millions of others who stood in line to make their voice heard in this election except for one thing: Ann Nixon Cooper is 106 years old.

She was born just a generation past slavery; a time when there were no cars on the road or planes in the sky; when someone like her couldn't vote for two reasons -- because she was a woman and because of the color of her skin.

And tonight, I think about all that she's seen throughout her century in America -- the heartache and the hope; the struggle and the progress; the times we were told that we can't, and the people who pressed on with that American creed: Yes we can.

At a time when women's voices were silenced and their hopes dismissed, she lived to see them stand up and speak out and reach for the ballot. Yes we can.

When there was despair in the dust bowl and depression across the land, she saw a nation conquer fear itself with a New Deal, new jobs, a new sense of common purpose. Yes we can.
When the bombs fell on our harbor and tyranny threatened the world, she was there to witness a generation rise to greatness and a democracy was saved. Yes we can.

She was there for the buses in Montgomery, the hoses in Birmingham, a bridge in Selma, and a preacher from Atlanta who told a people that "We Shall Overcome." Yes we can.

A man touched down on the moon, a wall came down in Berlin, a world was connected by our own science and imagination.

And this year, in this election, she touched her finger to a screen, and cast her vote, because after 106 years in America, through the best of times and the darkest of hours, she knows how America can change.

Yes we can.

America, we have come so far. We have seen so much. But there is so much more to do. So tonight, let us ask ourselves -- if our children should live to see the next century; if my daughters should be so lucky to live as long as Ann Nixon Cooper, what change will they see? What progress will we have made?

This is our chance to answer that call. This is our moment.

This is our time, to put our people back to work and open doors of opportunity for our kids; to restore prosperity and promote the cause of peace; to reclaim the American dream and reaffirm that fundamental truth, that, out of many, we are one; that while we breathe, we hope. And where we are met with cynicism and doubts and those who tell us that we can't, we will respond with that timeless creed that sums up the spirit of a people: Yes, we can.

Thank you. God bless you. And may God bless the United States of America

Weekend Review

Halloween was interesting- it was like herding cats. I will have to post pictures. Little Bug had an okay time. He really liked the candy aspect of it. He readily signed CANDY PLEASE at every store. He did not like the costume aspect- he cried and cried and cried over his costume. Once he saw other kids in theirs, he became distracted, but was unhappy with it until that point. He also had a hard time with the process of trick or treating. We went to the Proctor District and you stand in a HUGE line as trick or treat. This meant that there was someone bumping him or touching him or getting to close and he would get upset. He did pretty well with handling it and only bit himself a few times.

He had therapy yesterday and it went okay. He is starting to exhibit the behaviors that he has at home at therapy. This is going to sound mean, but it is good to see for two reasons. One, this confirms my suspicion that we aren’t bad parents. Two, this allows us to address the issues, rather than simply reporting them and getting ideas. His aggression is getting worse- he bit me a couple of times, Frank got hurt, he bit himself, and hit his therapist in the face, so we are to begin ABC charts- antecedent, behavior, consequence- to see if we can’t nail down what the behavior means and give him a better way of expressing it.

This brings me to my last thought- the holidays. They are fast approaching. They make me nervous. I am concerned for Little Bug and how he will do with DN’s family. I am also concerned with how Little Bug’s cousins will fare as he gets aggressive during play. DN and I had some conversations around this and came up with a strategy. No more than 3 hours at DN’s parent’s house. There will be extra people- including kids there- and it will be stressful for everyone. We will leave when Little Bug is ready to leave if it is before the 3 hour mark. If he gets aggressive or is having a hard time, we will go. We are also going to bring special food for Little Bug as you never know what he will eat. It’s not that he passionately loves things and then one day hates them. It’s more that he is random about what he will eat and we have to make several dinners.

“… a broken model of someone else’s perfection”

This was stated by Amanda Baggs as she reflected on ASD therapy as a person with Autism. Please watch this video- it is the first I have found that includes people with ASD and their families that don’t dismiss a person, but embrace diversity.

http://www.cbc.ca/national/blog/special_feature/positively_autistic/positively_autistic.html

A cure?

I received an email today asking me if I wanted to cure Little Bug and giving many pointers on how to recover him. First of all, this is a deeply personal decision that each family needs to make for themselves and not something to be casually offered. We are not talking about going to get a coffee or out to lunch, we are talking about treatments that could be dangerous. You need to consider both the pros and cons and decide what is best for *your* family. Once you know that, who cares what other people think- do what you know in your heart is best.

To answer the email, no, we do not want to *cure* Little Bug. Why, you ask- because there isn’t anything wrong with him. Yes, he has difficulties. Yes, he may never do certain things. Yes, he gets frustrated. But he is happy too. All you have to do is see his smile or hear his laugh to know that he is happy and that he knows he is loved. You can see that he is making progress *every day*. Just because it isn’t on the same pace as everyone else, doesn’t make it invalid- just different.

In general terms, I personally do not believe in curing. I believe in helping people achieve their highest potential. I believe that there is room in this world for diversity. Do I believe that it is easy to be different? No. From my personal experience as a gay transsexual man- its not.
If you want perspective on this, go ask the source. Read about people like Dr. Temple Grandin or Jason “J-Mac” McEliwain.

For a dose of hope and perspective, read The Game of My Life. Or watch this video:

(it’s the 8th item down on the list)
http://video.google.com/videosearch?hl=en&q=j%20mac%20basketball&um=1&ie=UTF-8&sa=N&tab=wv#

Words by mail

Little Bug’s words were delivered yesterday by USPS- which is great because he was getting of the old Signing Time’s we had. We had a pretty good night last night- he wasn’t completely better from the stomach virus he had, but he was in a better mood and seemed more active.

One of his favorite things at school is circle time, and more specifically, the shake it song:
You shake, and you shake, and you shake and you stop! Shh!
You shake, and you shake, and you shake and you stop! Shh!
YOU SHAAAAAAAAAKE ANND YOOUU STOP! Shh!

He now does the song by himself- no words but motions. He will sit in the back of the care and go through it, shaking his hands in the air, stopping and shaking some more. Last night, we were able to transition this to a new action- jumping. I was so proud of his ability to accept that change. I was waiting for it to be difficult, but he loved it and kept signing AGAIN. We have some new words to add to our list. I am currently sorting out the 10 he had before therapy and the rest. I am also sorting his signs into the ones he had before therapy and the ones after. It’s a bit of a monster, but it will let us accurately measure his progress. We also need to begin keeping track of which are UNPROMPTED and which are PROMPTED. For progress, they differentiate those two- as the goal is to get him not only *more* words, but *unprompted* meaningful speech- like he used to have. He used to say two word phrases and sometimes even sentences- I DID IT! We’ll get there. Little Bug will do what Little Bug will do when Little Bug is ready to do that. (For those of you who don’t watch signing time, it is from a song called Shine- about waiting and hoping for development) I need to remember this and not worry so much.

New Words:
Open
Stop
Paw (Potty)
Sit
Down
Be- big
Baby

New Signs:
Big
Blue
Colors
Red
Draw
Sit
Jump
Swim
Open
Come