World Autism Awareness Day...

is April 2nd if you didn't know.  I wouldn't know if I didn't have an Autistic son myself, but it was this month last year when our little world changed.  Last year in April is when Sam quit talking.  It's also when he quit looking at people and started the moaning and quit playing with toys and and and...  I could go on forever. 

It all finally hit me seeing him around other people at Dylan's birthday party.  He wasn't just shy or being stubborn; something was tragically wrong with him.  I wish it didn't happen.  I wish I knew why it happened.  I wish I could freeze time to have the other version of my Sammy back.  It still feels like I have had a child taken away from me, like I've lost him.  I'm being honest, but don't get me wrong; I still love him to pieces and believe in him.  I don't want pity and I hope everyone else can and will take Sam for what he is, what he can aspire to be, and see how sweet and awesome he really is.

I swear this boy is like the real-life Caillou, he'll never grow a full head of hair. Ha!

I try not to be down about it.  I don't let his Autism consume my every living moment and thought.  I think more to making all of our lives as normal and happy as possible instead.  I'm not in denial by no means.  Therapies and diets won't completely fix my Sam, but slowly will alleviate some of his issues.  He's not going to be "normal" and I'm getting to the point where I'm okay with that, because, well, I have to be.  I celebrate all the little things he has progressed to do.  Life is going to continue to go on.  I choose to be as positive and optimistic as possible.

I miss this. Holding him on my lap, no squirming, totally content.

 

Now I'm not Mary Frickin' Sunshine, but I refuse to live my life as a Debbie Downer.  I still have my days and moments.  I don't enjoy scrapbooking anymore for instance.  It outright sucks to document the times when everything was fine and knowing it will never be like that anymore.  It also sucks trying to scrapbook the present, because it just reminds me and starts those negative thoughts.  There's only so much I can do and I'm trying my best everyday to better Sam.  Dwelling over every new study and news article isn't going to change anything for us, except make me more depressed about what I can't change.  Even if Sam gets worse with age, every little thing is gonna be alright, because when you think about it, it really does get to the point where you can accept that it's alright.

It's my mantra.

Now onto actual awareness... I don't tell every person on the street that Sam is Autistic.  Sure, workers in the church nursery know, close friends, and of course my ,family; but I don't feel the need to tell every single person.  I'm not embarrassed.  If he has a meltdown around someone that doesn't know, then oh well.  He starts saying LA LA LA over and over again non-stop, again, oh well.  I do a little trick my Grandma taught me: Just smile and nod - smile and nod.  I don't care what people think of me.  No, really, I don't.  I don't feel it's my job to run around educating everyone about Autism either.  But for the sake of this blog post about awareness; there are some things I wish people did know, things I wish were common knowledge to everyone, like:

• There's a quote somewhere out there that basically says this:  "You've seen one person with Autism, then you've seen ONE person with Autism."  This is true!  That's why it's called the Autism Spectrum.  Every person with Autism has different traits and behaviors.  Some are worse than others. How you have seen one Autistic person behave in a Lifetime movie, is not how ALL Autistic people are like.

• Speaking of movies, Autism does not mean my child will grow up to be like the Rain Man.  

• It also doesn't mean my child will be some prodigy like you have seen on The Discovery Channel that can figure out any math equation, memorize every baseball stat, or can paint an entire city view with one glance.  There's a reason these people are documented on these type shows, because they are unique situations.
  

 

I asked Sam to smile for the camera and this is the huge, cheese grin he gave me!

• Autistic people are capable of having feelings and most do express and show feelings of love.  Sammy can give hugs, smile, and laugh.  Just because an Autistic person isn't looking at you or saying anything, doesn't mean they aren't listening and comprehending.  Lots of Autistic adults go off to college, get married, and raise children of their own just fine.  Maybe not ALL Autistic children will grow up able to be a member of productive society, but it has been done.  Sam is not brain-dead.  With the early intervention we are receiving, I have high hopes for my son.

• Many Autistic people do understand the word "no."  Sam is diagnosed in the moderate to severe range of Autism and understands this.  He may not behave like I would always wish, but he is capable at times when he wants.
  

• I have heard many times said to me, "Oh he's Autistic, he has no fear."  This is not true.  For example:  Sam is a climber, but he does understand he can fall and hurt himself.  If he didn't, he wouldn't teeter on the edge.  He would fall down all the time, every time.  He's a boy!  That's how boys are!  If he hurts his hand on something, he doesn't immediately go and do it again. And sometimes, he does, but he's just "testing the waters" so to say.  He tries to figure out how much he can do before he does hurt himself, but that's a part of learning and his personality. 

Sammy & Cliff - my handsome men

• All Autistic people are NOT alike, in Sam's case he is generally good-natured and not violent.  Just because he's Autistic, it does not mean he is a complete menace unable to be disciplined.  If he is misbehaving and pushing a kid, I want to know so I can try my best to correct this in him.  I don't use his Autistic behaviors as an excuse because I think he's some "special angel" which grants him some pass allowing him to get away with anything.  I know he can be naughty just like any of other kiddo.  Maybe he can't help a lot of things, but it doesn't excuse violence towards others.  But there's also a line of what some think is misbehaving where I see as just fine, like with him opening and closing a cabinet door for an hour.  It's fun to him.  He knows exactly where to stop the door so he won't squish his fingers too.  Yeah, I'm aware it's annoying, but he's not hurting anyone by doing it. 

• Just because I have one Autistic child does not mean all my children will develop Autism.  I think I read that my new baby only has like a 2 - 8% chance of being Autistic.  Yes, I worry that it could happen and I will love him just the same as I do with Sam should that occur, but Brett's not totally destined to be Autistic.

• But the number one thing that I wish people knew is that Autism DOES exist.  I didn't invent it to have an excuse why Sam doesn't talk or acts the way he does.  I don't want to hear things like, "Well Einstein didn't talk til he was 5" or whatever.  Or "Sam's just taking his time."  Or "If you would refuse him things until you forced him, he would do it."  I'm not being lazy and I spend a ton of time with Sammy.  Don't tell me that you think he seems fine after spending some time with him.  I'm not exaggerating for kicks and attention.  Ask yourself, why would I want Autism for my child?  Why would I take him to these doctors and spend all this money and time?  I would LOVE for him to be like other typical children and our ultimate goal is for him to resemble something close to that as possible. 

I sometimes consider making pamphlets to hand to the people unaware of what Autism really is with all these points above, but I've come to realize people don't care unless it affects their life.  It really is easier and allows me to live happier to continue to just smile and nod, smile and nod.

2011!

Happy New Years!

{image from brainz.org}

I always try to make resolutions that are specific and can actually be accomplished.  For 2010, I kept it simple but meaningful and vowed to raise money for the Alzheimer's Association and walk in my Grandpa's name in our county's Memory Walk.  Thank you to all my friends and family that supported me.

For this year, I again want to keep it simple.  I'll have a new baby in tow along with my other 2 rambunctious boys. I'm still not sure if Cliff will be in night classes yet for work either.  Ahhhh!

#1:  Eat at home more!
It's borderline ridiculous how much we spend on take-out and going out to eat.  I completely blame pregnancy for this happening so much lately!  I want to find more recipes we all will like and are fast to make.  I want to find more options for Sammy to eat too since he's on the GFCF diet. 

#2:  More books for the kiddos!
I want to hit up more garage sales and get some new books in the house.  Dylan does Book It! for school and we've hit about 40 or so books and I'm running low on new ones to add to his list that are on his level.  Sammy has also quit eating and destroying books and really loves them.  I have tons for him at the moment, but Dylan's selection is seriously lacking.  If you have any books to recommend in the kindergarten - 1st grade level that boys will love, let me know!

#3:  Be more positive
I'm not a complete grump-a-lump or anything, but I want to feel more peace and happiness.  I figure the only way to feel that way is to act that way, right?  I am pretty sure this year will be tough for me - Dylan going to school, Sammy starting all these therapies for Autism, and then throwing in new Baby Brett to the mix - I don't want to go crazy!  So I'm going to look for the bright side in situations from now on - or at least try!

Happy Birthday Papa

Today would have been your 92nd birthday.  I can't remember how you sounded when you said my name anymore, but do still remember how you would say, "Shit, Billie!", which in a funny way cheers me up for forgetting the latter.

I would steer the tractor sitting on your knee while you would sing and whistle "Zippidy Doo Dah" in my ear. Yup, I still remember that.  You would put barrettes in my hair everyday for school, even though you were missing your right arm.  You could drive a stick, cut a steak, tie a tie - there was nothing you couldn't do.  I can still smell you - Old Spice, onions, fresh cut grass, and gasoline.

There will always be a hole in my heart that no one will fill.  I think to myself it would all be easier if it hadn't felt like you were already taken away from me early due to Alzheimer's.  I wish the greatest man in my life could have really met and given me his blessing when meeting the man I would marry the day I announced I was engaged.  Thank you for always making me feel like a princess, Papa.  You'll always be my Superman.

Thank You Jenny

 

So yeah, this song probably wasn't written in mind in what it means to how I interpret it, but it touches at me.

"We all have a weakness; but some of ours are easy to identify, look me in the eye...
So when weakness turns my ego up; I know you'll count on the me from yesterday if I turn into another. Dig me up from under what is covering, the better part of me..."

For about 3 or 4 months, I've felt something is off with Sammy.  I hate to admit, but I am a cynical person.  I'm not outwardly pessimistic at all, anyone that hangs out with me would probably describe me as a lot of fun to be around. I was a counselor at a camp for special needs kids for 2 1/2 summers.  I had the autistic and ADHD kids in my groups those summers.  I know what autism looks like for sure.  But with Sam, I kept it all inside to myself.  Maybe I didn't want to admit it?  I made up tons of excuses for everything. 

Why does he have no interest in Little People and their playsets like Dylan did?  Sam just thinks that sorta thing is boring I suppose.  He loves trucks, but not to roll them around; he wants to spin the tire and moan at it for an hour.  He is just really super smart and mechanical minded like Cliff is all!  That's why he likes opening and slamming a door for hours - just figuring out how it works.  Oh, that's kinda cute, he's making himself dizzy spinning around in circles.  He's just teething right now, that's why he's not talking so much right now.  He walked early.  Sam is just more focused on moving around to chase his brother instead of talking and playing with toys.  He's independent, that's why he won't sit in my lap for me to read to him.  -- This list of things seriously just goes on and on. --

Then I started to realize the only words he says anymore are "Momma" and "Daddy".  Then that even condensed down to "Ma" and barely any "Da" sounds.  He used to even say Spongebob and kitty cat for goodness sakes.  Why won't he answer to me when I call him?  Why doesn't he point?  Or clap?  Or at least shake his head yes and no?  What has happened?  I took him to the doctor and since he's only 19 months, Sam is "classified" for right now as suspected autism or however they wanna word it.  I don't want this, but it feels good to know I'm not crazy and there really is something going on with my Baby Sam.

I never got "oh woe is me" about all of this, which surprises me actually.  I'm a little offbeat and easy-going, never like those perfectionist Stepford type wives.  If my child gets weird looks for spinning in circles and moaning, I'm the type that would join in with him.  I'm not trying to make this about myself, because it definitely isn't; but this is sort of a little pep-talk I give myself.  God knew I was strong enough to handle this.  I've always been about preserving the child-like spirits in children, catering to their little quirks so they can become their own person.  It may mean I have a rambunctious child - a.k.a. Dylan, my oldest son - but when I hear his imagination and creativity when he tells me the stories he makes, I know all is worth that.  So if Sammy wants to walk around the outside of the yard and pass his hand over the chain-link fence instead of playing on the kiddie slide, I'm okay with that.

Word got around about Sam and tons of well-meaning people were soon calling me and emailing me.  I'm not embarrassed about Sam at all, but it was just something I didn't want to discuss with people that I am just acquaintances with.  And all these people seemed to think autism meant my son wouldn't hug me anymore, be in some sort of catatonic state, and would start confusing symptoms with all sorts of crazy things.  Being the Southern raised girl I am, I smiled and nodded; but oh my goodness, I was done with even listening to any of this anymore.  The tid-bit that would make me roll my eyes the most and I kept hearing was about how Jenny McCarthy cured her child with a diet.  I was at the point that if one more person mentioned Jenny McCarthy and if it wasn't related to MTV, I was going to scream!  Then, that day a family member dropped off her book to me at home.  May I mention it was a family member I barely talk to and found out about Sammy through a chain of 3 people - all which none I had told myself.  But again, I smiled and nodded and the moment the door closed, threw the book across the room.  I got us all ready for church that night and was taking Sam for his first time to Awanas where he would get to play with children his own age.  I stayed with him and that's when all of this really hit me.  Seeing him in comparison of all the other children is when my heart really broke.

I got over myself and read the damn Jenny McCarthy book.  And holy crap, besides the seizures, her child and Sam could have been twins - all the way down to playing with straws and slamming doors for fun.  Then it dawned on me, Sam's speech regression started around the same time I was weaning Sam from his bottle of soy formula to Lactaid to sippie cups of whole milk.  I started the autism diet the next day.  It's been about two weeks now and there are DEFINITE improvements.  I don't care what any news article or doctor wants to tell me, it works.  We had to get rid of his favorite nutrigrain bars and no more spaghettiOs, but it's a lot easier than I had originally thought.  I make up a huge batch of a dinner type food like lasagna or a casserole at the beginning of the week and pop in a portion in the microwave.  Sam is a picky eater and likes eating the same things over and over.  I add the veggies he hates by grating them in to hide them.  Thankfully, he loves fruit and yogurt.  I know these foods that cost more and all the explaining I have to do to family members that want to give him Oreo's and Cheetos is all worth it when I see my husband bust into tears because his son looked him in the eye and said, "Daaaaaaaaaaaddy" with his arms open to him.  He's not looking out of the side of his eyes.  He's cut down on all the stims/tics/obsession type things.  He's recognizing people.  He's saying words again - UP!, Dylan, Martha, Papa, No, Ba-ba.  When he looks at things, it seems as though he's finally looking at them, almost like he had cataracts before and that's been removed now.  There's a lot more, this is just what comes to mind now.  Family members can tell as well, so I know it's not just me imagining things with too much hope.  Everything about him just seems genuine now.  Even if this is the most improvement that results because of the diet, it's still worth it.  And no matter what, I will strive to let my Sammy be Sammy.  I love him. 

The Wends of Texas

I had always been told by my Grandma (on my mother's side) that we are German descendants. Her mother was even able to speak back and forth German and English I've been told.  After some more genealogy research, I've found out that's not entirely true.

First let me tell you, my Grandma is like a character from a movie. Everything is overly-dramatized and stories are acted out with a lot of flair and probably exaggerated.  I know I am just like this and will be worse than she is when I'm an old lady.  The best way I can describe is her is as the mother in "The Glass Menagerie" play. Now don't get me wrong, I love her to death, really I do, but getting some sorta actual, factual info out of her for my family research is pretty hard.  Instead I get anecdotes like about her Aunt Emma having 44 yellow canaries in gilded cages on the back porch, which is pretty interesting, but are you starting to get my point here? 

She led me on to a very good clue for me to research this time.  My entire life I have heard my Grandma go on and on about the Wends of Texas.  She says it in such a dreamy type voice.  She would made it sound like we were born from kings and queens of Germany.  She always made a point to mention there's a book written about The Wends of Texas.  And hey, guess what?  There actually is.  And google and roots.com are full of info with just that little key word.

Do you know how the Mexicans have come into the US over in the Southwest area? They may be Americans; but would identify more so as being Mexican.  (Just go along with it for my analogy.)  This is somewhat how my ancestors were in Germany.  The people related to me were Wendish Sorbian people living in a concentrated area of Germany.  They were from Bautzen in Saxony, Germany (aka Upper Lusatia region).  The Wends from this area are more so of Czech descent.

The Wends immigrated over to Texas on a small boat less than 146 feet long named the Ben Nevis.  There was about 588 people stuffed on this boat where they would stay for about 3 months at sea and another month at dock quarantined for illnesses in 1854.  On my maternal grandma's side, members from her daddy's and mother's side were on this boat.  Grandma's parents are a good 2 generations younger than those on the boat, but still kinda cool to think all the family is from the same town in Germany.

Traditional traditions of The Wends are extravagant egg painting, corn husk dolls, and black wedding dresses. 

Cultural foods include sausage and thin egg noodles.

They would decorate the insides of their churches with images I can only relate to looking like the drawings from fairy tale books.  They enjoyed wood crafts - burning or carving folksy drawings into wood.  I notice a lot of these have a serpent type creature, which I haven't exactly figured out yet.  Some even have children playing with these snake-dragon like things. 

One of their holidays is called The Bird's Wedding which takes place on January 25th.  Children would leave out a little food outside for the birds and in turn receive a small gift or piece of candy. 

The women dressed very colorfully and decked out in dainty lace.  It's all so pretty and colorful. And such a change from now-a-days.

Etsy Fave Item of the Day - Why did the ostrich cross the road?

Probably to get a latte

If you don't know me personally, you should probably know now that I am terrified of birds. Hysterically scared of birds.  Ostriches even more so.  All alien, dino looking and huge.  As a child, an ostrich (or was it an emu?) ate my Keds while I was on a trampoline.  More like trapped on a trampoline, because about 4 or 5 of them surrounded me taunting me.  How does this type stuff always seem to happen to me?

Annnnnyways, even with all that, I love this painting!  I love the street lines with the shadow.  I love the textures on the ostrich.  I can feel the story of this mega-bird.  He knows where he's going, why are you asking?  That's the attitude I get from him at least.  This original painting by revampedart on Etsy is sized at 8x10 and you can view it for sale by clicking here.

Etsy Fave Item of the Day - Ruffle Bag

aka: the only fanny pack you'd catch me wearing

I love ruffles!  The material of this bag is nice too, looks to be corduroy.  You can view this item on Etsy from seller Kinies by clicking here.