Saturday, May 31, 2008

Today was a wedding day

I went to a shower today then on the way home watched a beautiful bride walking up the steps of the church. It occurred to me that Sam may never be well enough to get married. I run that risk with all the children I know. You never really know what life brings, anything to could happen to anyone of my children. It's all a crap shoot really. regardless of the possibility I still can picture my boys as adults.








I can see Tyler in all of his Asperger's wonder being a brilliant scientist. I don't know that i see him getting married. I think he may be a priest and personally I think that is fantastic. I don't doubt that Tyler will be great as an adult.



AJ maybe little. In fact he may even qualify someday as being a little person. There really is no way to know. Doctors estimate his final height to fall between 4'6" and 4'11". If anyone can handle being so little it is AJ. That kid ROCKS. He plays baseball, basketball, and soccer. He is fantastic at pretty much everything he tries. He is smart and funny and lovable. He will end up marrying some 6 foot tall blond model with DD boobs and a PhD. I can see it.






Nate is so little. he is such a sweet loving happy kid. he is one of those people that makes you feel special with just a smile. Fantastically silly and wonderfully opinionated even at one year old.









And then there is a Sammy. i have no idea what he will be able to do. Will he be able to go to college? Will he ever have a meaningful relationship (considering he barely even attaches to me)? Will he be able to hold a job and keep his temper under control?It occurred to me with every weeding moment I went through that there are no guarantees that any of my boys will get married, have jobs,have lives much beyond this moment. But Sammy is the only one I cannot picture myself dancing with at his wedding. the only one I can't see learning to drive. the only one I can't see ever moving beyond super heroes and poop. he is the only child that I really doubt the future of. I want to be positive but how do I get there from here?











Friday, May 30, 2008

pondering...

kelly had said the other day that one of the pictures she took was like "autism let sammy out" I keep thinking about that. she is right. it was that one moment for just a split second I saw him. the sam I thought he was before. So i wonder if I can see him even for a second does that stand to reason that i can get him out from behind the autism at some point? just a thought

we are doing a three day test with sam. it involves poop and little tiny tubes YUCK. one more day to go and I can send the samples off to the lab. maybe then we can figure out what is going on with his stomach and whether we need to reevaluate

Wednesday, May 28, 2008

silence of the sam

Autism is such a funny thing. Our babies with this mysterious world look so normal. heartbreakingly normal to everyone around us. they don't have a certain look or feature that denote the handicap. They just seem normal. We as parents are the ones who get the looks the stares and the eye rolls. Our babies look normal, its the parents that look as though they have a problem.we get the looks from people who wonder why we can't control our child. they wonder why he screams every time a car goes by. They wonder why he greets strangers by growling barking or even better by licking them. Why he walks up to strangers and tells them what flavor poop they are. So our babies look normal. normal to everyone but us. we sit and apologize for every misstep every infraction on another persons space every single time.we count the times they stim on innaproprate things.we watch their diets,there sleep,their behaviors.It never ends. we have to watch their interests grow into obsessions that rival Monk each and every time. sometimes bordering on life threatening. like the time Sammy became obsessed with white rocks. darting into the street to gather and rub every single white rock anywhere. even leaving the house...alone
my baby my SAM is silent. he can talk but he can't tell me how he feels. he can't have a conversation with me. he has to learn to say i love you. and even that can be hollow.
but once in a while i catch a fleeting glimpse of the boy trapped inside. every so often autism lets Sammy out and i get minute glimpses into his heart and soul. i can see him in there and i plan to fight for him

photo by kellingsen photography

Monday, May 26, 2008

half anniversary

in just a few more days it will be the half anniversary of D day. the day the doctors put a name to the theif that stole my son.

I miss the sammy I thought he was and sometimes I don't particularly care for the sammy he is. we love him. I adore him. but somedays it is So very hard to like him.

I know he can't help it he gets into everything. the other day he got into my mascara. cuttest freeking thing ever his whole face was covered with mascara and he was so proud of himself. he smiled until someone laughed and then he got sad. did he know they were laughing at him? I think so. that my dear is a breakthrough.

Sunday, May 25, 2008

went to savers

Didn't find the jars I was looking for. I found one but it was chipped along the top. i think I may just buy a yogurt maker and do it that way. my flour order came in today and that makes me happy. Once I make the yogurt then I can start making yummy deserts. I am going to try a pumpernickle bread recipe tomorrow with the hazelnut flour.

sammy loves animals. elephants especially so I have decorated his room in jungle prints. I found a great giraffe stuffie and a leapord stuffie which he is now in love with.



. i bought a tea ball since I have to learn to not drink my coffee with cream so I figure I will just switch to tea which I prefer black anyway.
I got nate a cool toy for his birthday too.
I found a dehydrator so now I can make SCD legal fruit roll ups and beef jerky. I wonder what else I can make with it. should be fun!
anyone know how to use one??

Saturday, May 24, 2008

doubt anyone reads this yet

But I figured I would ask.

I am working on the menue for the next two weeks. I need ideas. No pasta,potatoes, or bread. no grains. cheese is ok,as are all the vegetables and all the fruits. most beans are ok as long as they are soaked for 24 hours prior to being cooked. I need desert ideas too. since we are all dessert people. I need to start buying honey wholesale. It is the only sweetner that we can use. :(
I need to find a few good farmers markets for my produce until my garden comes in a little better.


on a side note. I am sad. I love baking breads and cakes. I love the feeling of kneeding breads with my hands. I use to make a kick ass oatmeal loaf and a great basil focacia. those are out now.
I find myself over eating bread because I know we wont have in after next week. I have been binging on it constantly and it is making my stomach sick ... yet I can't stop. I know how sammy must feel. though his understanding is considerably more limited it is still sad. it all goes back to "food IS love" shame on me I thought I was past that.

Thursday, May 22, 2008

making yogurt

I am going to go to savers and see if i can find glass jars
a 40 watt lightbulb and a hard sided foam box...

Wednesday, May 21, 2008

flour

I just spent 80+ dollars on 4 units of hazelnut flower and 2 units of almond flour.
lots of money. not for the faint of heart. I think once I can feel what the flour feels like then I can try to make my own.


I need to go to savers and salvation army and find glass food jars kind of like these.



if anyone sees any drop me a line

my sam I am

videosammy saw the movie Evan Almighty. freeking hysterical! great movie. so now he "does the dance" he seems so "normal" in this video until I tell him I love him. I swear my only goal right now is to get him to tell me he loves me without me having to fight for it every single time. right now i say i love you and he says "thanks" that is as good as it gets

praying does wonders

http://www.kingarthurflour.com/

found it!

this is proving harder than I thought

I can't seem to find nut flour other than almond. i want almond but i also want cashew flour and coconut flour. I can find some of it but not all of it.

i am having a hard time figuring out what the heck to cook for my family. there is no simple stuff on this diet. nothing quick. Ughhh

morning one

I need a plan of attack!
must

* find somewhere to order nut flour in bulk
* clean out cabinets
* make SCD chicken soup
* plan meals for two weeks
* grocery shop for SCD
* breath
* pray

No starch allowed

After visiting with a specialist for my son we have decided to try the specific carb diet. You see my son has autism, correction 2 of my sons haveautism we have decided to go ahead and try the Specific Carb Diet. more info can be found here
http://www.breakingtheviciouscycle.org/index.html and herehttp://www.breakingtheviciouscycle.info/index.htm
You see we saw the specialist for sam

he is three years old. he is amazing and smart, loves spiderman and superman and smells like mustard a lot. He also has autism.Our family is on a mission to help him. to get him back from this.
Why do i say get him back? you see it wasn't always this way. he use to seem ok but somewhere at some point things changed and we lost touch with him. I want him back.
the appointment was for sam, however after talking to the dr I think I am putting the entire family on it. We all have digestion issues and it's a healthy way to eat.
so we can't have starches as of June 1st. Fruit veggies and meats are ok. nuts and beans are too.
I have started this journal to document our journey as we delve into the SCD and hopefully recovery for all of us