WunderSkool Here We Come!

Jake has been accepted into the program at WunderSkool! I know it may not truly be a panacea, but today it feels that way, and darn it, I am gonna take that feeling and savor it for at least a few days. We already have the transition meeting arranged.

and... there might be room for Lucy at the local awesome day school... what to call it? Maybe Woodstock? They will call me in the morning.

and...I found sweatpants at leTarget for Jake for to use as pajamas at camp.. he leaves *tomorrow* He is very excited.

and... no one is sick at my house

Howz 'bout in celebration y'all forward an email to every person you know and get them to sign that petition we've got going!

Ask Mrs. Obama to help form an Autism Corps. Please sign the petition http://tr.im/sa3y and while you're at it, join the Facebook group! http://tr.im/sbWD

Have a great day.... I am!

A is for Apple

Jake ate an apple. Really. All by himself. Not chopped up, not pre-speared on a fork. He ate an apple.  He ate the apple pictured below on the right. 

  

Bite by bite he picked up the apple, took a nibble then set it down on the counter. Then he picked it up again, chose the next bite and took that one too. I started to cry. 

I told him I was really proud of him. Lucy, not really understanding the great accomplishment, but loathe to miss an opportunity to be a part of a good time, ran up and said "Good job. Jake loves apples!" 

Jake has never been able to do this before. Well, if we did let him have his own apple he would eat indiscriminately, core, stem, seeds, whichever. This time I watched him choose the next bite. 

Sorry to be obsessing over this seemingly small task but add it to this little list:

• new skill: Jake can pull the covers over himself as he lies in bed. 
  
• After grabbing the hair of a little girl on the play structure on Thursday (as she raced by him). I said "Jake! LET GO!" and he unclenched his fist, her shiny hair then slid past his palm and it looked more like the hello he was trying for and less like an attack.
• new skill: After being unbuckled, Jake walks off the bus without assistance and grabs my hand at the door.
• Jake tried to tickle his sister tonight after she tickled him. He touched her stomach, instead of a random grab for whatever part he could find. 
• Jake sat and listened to the entire story "The Giving Tree" when I just read it to him tonight.

It has been a pretty rough month...maybe even six weeks. Colds and migraines and general fussiness, and now, once again it feels like we have some small but significant gains in the aftermath. 

I will need to remind myself the next time I am in those dark hours, that this light feels so very good.

Evan Kamida (July 30, 2000 – July 24, 2008)

My heart goes out to Vicki Forman and her family. She is a remarkable woman, and her loss is unimaginable.

If you feel moved to do so, in lieu of flowers, please send contributions to:
The Pediatric Epilepsy Fund at UCLA
Division of Pediatric Neurology
Mattel Children’s Hospital at UCLA
David Geffen School of Medicine at UCLA
22-474 MDCC
10833 Le Conte Avenue
Los Angeles, CA 90095-1752

or online http://www.vickiforman.com/?p=1011

As the women in my family have often said

"There but for the Grace of God, go I."

Wishing you fortitude Vicki.

So Are The Days of Our Lives

I received a birthday gift from Bridquet that was so thoughtful... so full of thought and effort that it may be up there with the most precious gifts I have ever been given.

On the right-hand side of this blog there is a little note, that has been on there since I started writing... something about the fact that for 15 minutes of each day I think that we are not going to make it... it is all too much, and I am no good at this job, and I am overwhelmed, and my body aches, and Jake is never going to be independent. I am not trying hard enough, and I have nothing more to give to my children and my marriage. I have lost myself. I am failing my special-needs child. I am not using the gifts God has given me. I have no faith. I am tired and there is nothing to serve my family for dinner. My house is a mess. My vocabulary is weak. My hair is thinning and has split ends. I never sing anymore and I am too quick to judge others. I have no patience. I am lost and it is all hopeless.
...and then minute sixteen comes and we are all going to be okay. Really okay. All of the previous moments are nearly erased (save for the aching back)...and we just move forward. We do our best; praying for great things and planning for the realities of our life. I am the strongest woman in the world, and possibly the luckiest.

Well Bridquet bought me a quarter-of-an-hourglass. It is beautiful and looks very much like the photo here. What is even more meaningful are the words she spoke to me..and I am paraphrasing.

For those 15 minutes it is like you are in the hourglass. Trapped and struggling, slipping bit by bit with nothing to grab on to, nothing to stand on. You are stumbling and falling and nearly buried alive. It feels like you will never get the right side up again.

and here is the part that was so kind

You are the sixteenth minute. You land upon the top of those grains of sand and you are grounded and standing tall and everything is under control. You are the sixteenth minute for your family. You are what makes it so it will all be okay again.

The Stein is Sometimes Half Full.

It was Oktober Fest in Tahoe this weekend. Each year we go with my sister and her husband and now there are four children who tag along. It is very hard to push strollers and wheelchairs over pine needles, but the sausages are good, we all love sauerkraut and the beer selection is just lovely.

So last year, and the year before we just bought the giant mugs. .It is one of those deals where if you pay a little bit more you get the souvenir mug and all of your refills are more beer for much less money. It is the way to go if you are going to have more than one beer. Which we may or may not have done in the past. I am guessing we had more than one in years past.

This is the first year that I actually stood in line and thought about my purchase. I wanted to buy four mugs. I wanted to think that we were going to stay and hear the ooompa band and the yodeling competition and have several beers each and relax in the crisp air, soaking up September sun. I wanted to be optimistic. I want to be those people.

The reality is that the chances of any one of the adults finishing even one beer without needing to deal with a kid-related crisis is pretty slim. Jaster and Demanda have "twins" (the boys are 7 weeks apart from two different wombs) and we have our independent sprite Lucy and our unpredictable elf Jake. We are not the kind of crew that gets to sit still, be patient or relax.

So I compromised. We bought two mugs and two cups. I feel like this every day. In nearly every decision I make. I want to think that I can take my two children to the park, a park with no gates...uhm no. I want to think that the kids and I can stop in and get some milk at the grocery store and have it take only ten minutes. I want to go to the movies, go on vacations and go out to dinner with my children.

I struggle to find the balance; sometimes the optimist wins and I buy four souvenir mugs...sometimes we drink out of paper cups.