19 May, 2009

Can't Tell the Tale Much better

It really did go down pretty much like this: I've copied this from Sage's blog
because it was even funnier to me reading my life through someone else's eyes. I am so grateful to have her as my friend and sometimes scribe.

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"Mothering a Naked Two Year Old"

Went to visit my girlfriend on this sweltering day. I was greeted by her exuberant and naked nearly 3 year old daughter. Naked is fine with me-it's hot and I would consider joining her if I wasn't on my way back to work.
We all had lunch and hung out.
Later during my visit my friend's voice rang out in that parental I-am-irritated-with-you tone.

NO
That is not okay
Stop that
Do not put cookies in your vagina
Do you hear me
Say it back to me, "Cookies do not go in my vagina"
Okay
Good
Throw that cookie out

Amazingly enough-our conversation picked right up where we had been. Having had toddlers and special needs kids we are unflappable.

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Thank you Sage for making me laugh so hard I cried. Squid and Seymour thot it rather funny too.

15 May, 2009

Gwendomama Fund: Make a Real Difference for a Real Person

I posted a little something about Gwendomama previously, but am asking again for this community to rally around her.

Gwendomama is a really neat woman. I have enjoyed the hospitality of her home, the rigor of her conversation and the warmth of her friendship. She has a candor that is unforgettable, and a laugh that can fill a lot of empty. She is a supporter to many of us who struggle to raise special needs children, and has been a buoy and a light for many other families who, as she has, had their characters forged by the unimaginable loss of a child.

Last month, this strong, self-sufficient woman became a victim, and is now struggling to gather monies to pay her and her children's immediate needs: food, rent, utility bills.

Please forward, share, upload, download, whatever it is you do to harness the power of our connectivity. It doesn't take a lot from any single one, just a little bit from all. We are quite a force when we want to be.

Thank you for supporting Gwendomama and her children. Thank you.

Click on the widget to contribute:

14 May, 2009

06 May, 2009

p.s. the meeting went well

Hi there Team-

I just wanted to take a moment to say thank you.

I'm not sure if you noticed that I got a little teary-eyed half way through our meeting today. Not only is my son making noticeable progress in an area that will be life changing for him and our family, but I looked around the table and saw a group of people who genuinely care about my child, and are using their years of experience to help my child communicate his needs.

This is a hard life. Most days are more difficult than my little heart ever imagined child rearing would be, and I want to sincerely thank each of you for helping Jake learn and grow. As parents of special needs children, we often feel diminished, sidelined, and generally not taken care of, and today I got to feel hope, and a sense of well-being I almost didn't recognize.

Thank you. Thank you-

jennyalice

05 May, 2009

My Big Fat Amygdala

After reading this article I will be looking back at Jake's MRIs to see if there are any notes about his amygdala. I know there are some comments in there about his ventricles.

In other news we started Jake on l-dopa today. We will test his blood for Segawa's in a few weeks when he is under for his dental work and we can get a blood draw easily, but in the mean time we decided to try the Levodopa just to see if it works, given that it is fairly benign. Wouldn't that be great if it improved his motor skills?

It was crazy to see this video and watch these otherwise "typical kids" walk just like Jake

Gait dystonia from sweney on Vimeo.



At Sage's suggestion we also bought a little TV table/laptop stand to use in the bathroom. We will make a board to attach to it that has favorite toys in an attempt to get him to sit still long enough to use the toilet. He has no patience whatsoever when it comes to sitting there and waiting for something to happen. We'll try it.

Jake had a terrific time at camp last weekend. They played Capture the Flag and Jake was the star player, ensuring that his team won. Apparently the flag was attached to a bowl that was awesome for spinning, so he pretty much got a hold of it, and managed to keep it away from all of the other children. Who says these stim behaviors are anti-social?
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