Thursday, February 19, 2009

Don't speak for me

Ok...so I'm a little irritated. I received a book from Karen by Jenny McCarthy(by the way, thank you Karen.. :) ) I generally like Jenny McCarthy, I have even recommended her pregnancy books to many people. They are funny, light and dont hold back all the crap that comes with pregnancy. I felt like after reading Belly Laughs I was much more prepaired for the grossness of pregnancy. It wasnt sugar coated like many books. She tells you all-hemmeroids, sweating and weight gain...she doesnt hold back. So it was nice to get a real view on it. Anyway...most people know her son is Autistic. She has been lobbying about vaccines for awhile now and have writen 2 books about her expierence. Well...once I got Gage's diagnosis I thought "I'm going to read those books of hers, I liked the other ones". I was just too cheap to buy them :) Karen was nice enough to think of me when she saw one for sale and asked if I wanted it, which I really appreciated. Acutally....let me give you a little background first before I continue...

Ok...there are MANY people out there that are convinced that vaccines are what causes Autism. period. That is the only thing that could possibly be the answer. Now...I am not one of those people. I dont deny the fact that it could have very well been the trigger for many children, hell I'm not a scientist how would I know all that dna crap? I personally feel that Autism is genetic and is triggered by something in the childrens environment. Weither that trigger is vaccines, diet, a mitochondrial disorder(which is the case in one very public law suit), dyes in the childs food, preservatives...I dont really know. There are so many things now that are added to EVERYTHING we use/eat/touch that I dont really know. I just feel that there are so many things pointing to genetics. I mean come on, there are quite a few families out there that have more than 1 Autistic child...there are families that ALL the children are Autistic...some other families have only 1 child but have Autistic relatives(which is my newly discovered case...I found out a relative is on the spectrum). I also think that medical advances and awareness have really brought an insite it all. Who knows how long Autism has truly been around. It could have been around longer than anything else, but we never knew the signs or were able to diagnosis it. Maybe thats why it is so prevalent now...we actually know what it is. Either way I dont feel that anyone will truly know what it is or what causes it..thats just the nature of the beast. Hopefully sone day we will...

Ok..now to continue with my story....ok..Jenny McCarthy is really a crusaider for green vaccines...which is not a bad thing, putting anything foreign in our childrens bodies is always scary. But...I started reading the book..first the forward by some doctor. In it she contradicts herself a few times..but I just ignored that. I was reading it to hear Jenny's take and to possibly get some insite on the issue myself or to hear about how she says she "cured" her son(more on that in a second). I though well...anything that could possibly improve Gage's life, I'm for it. Well...I read a few paragraphs and started to get a little annoyed but I continued because I had had a bad day anyway so I thought it was nothing. Well...1 1/2 chapters late the book was on the floor. I seriously got upset. Here is why...she says in the book how mother's of Autistic children know that vaccines caused Autism, mothers of Autistic children believe this, say that, think this...well I was mad. I thought to myself..dont speak for me. Just because you think this, doesnt mean ALL mothers of kids on the spectrum think that way. How dare you speak for me! Theres another part where she says something like the mothers know why this or that. Well...no, this mother doesnt. I have no idea why my beautiful little boy has something that makes everyday more difficult for him than other children. Do I want something to blame, a defintive answer..or course! I could love to have something to say that, that right there is what Gage got Autism from and then squash it under my foot. Will that ever happen, I doubt it. I'm not saying that that is what they are doing, clinging to vaccines as an answer. They aren't. I believe in some cases, like I said, vaccines can trigger Autism..but not in all cases. There has to be some underlying factor...otherwise we would all be Autistic.

Now here is the other thing that bothered me. There are many things people say you can do to "cure" your child's Autism.Well...I dont buy it. There is no one size fits all cure. What works for you child, may not work for mine. There are diet changes, vitamins, supplements, therapies and biomedical interventions that people do. The diet is basically a gluten-free/caesin-free diet. I was actually thinking about this for Gage, but then thought he really has such a small list of things he eats that it isnt worth it. I dont want my child to starve because he wont eat potato bread..and I refuse to force him. It does work for many children, but I refuse to take anything away from Gage that he loves...and he certaintly loves his grilled cheese, sausage funyons. Of course my little guy knows the box/shape/texture/smell/ taste of those specific foods...if I try to change the brand, he wont eat it. I cant fool him at all. Vitamins and supplements I'm actually looking into, theres nothing wrong with those, vitamins are good for everyone. Who couldnt use a little more energy from some B12, I know I could. I just need to research what supplements and vitamins are suggested. Now...the biomed thing..this I am not comfortable with and here is why. What they do is chelation. Basically it is though that because of the vaccines there is excess heavy metals in the kids bodies and you need to get those toxins out to "fix" you kid. Well...chelation is VERY dangerous. It could kill an adult. You are basically putting horrible things in your body to strip it of those metals. I have heard about it doing wonderful things for kids..but I have also heard of it killing people. That is NOT something I am willing to risk. I dont care if 99 people live doing it...its that 1 that didnt that concerns me. I just dont like the fact of people saying they cured their child. Autism is a lifelong thing...maybe you can improve the underlying issues and therefore improve the child..but they will not go from Autistic to neurotypical. There is no magic potion. If there was...people would be buying case loads of it.

Now...with that said...I have been thinking alot about it. After reading what I did read of the book(now, I am going to finish it..I'll give it the change..you never know) and that Holland artice...I decided this much...

If there ever was a "cure" I dont want it. I dont need it. Gage is who he is and what he is. He is funny, beautiful, caring, loving, smart, goofy and has an awesome personality. Why in the world would I want to take the chance of that going away? I couldnt take the chance of "fixing" him and taking away the part of Gage that makes him, him. Maybe is isnt developing typically as far as his speech and social cues...but with everything else he has his strengths. He is VERY strong. He plays, laughs, obsessed over certain tv shows, cuddles, picks his nose, farts, poops, pees just like any other typical kid his age. What is normal anyway? Am I normal? Are you? Saying normal is really just wrong. To steal from his speech therapist... saying normal is like generalizing everyone. That could me that normal means everyone is 5'5", 150 lbs, has brown eyes and hair and is right handed. Well...so that person that is 5'2", 100 lbs with red hair and freckles isnt normal? What about that person that is 6'0", 220, blonde hair and green eyes with a bid mole? Are they weird? Who is qualified to judge this? Not anyone I know, thats for sure. As far as I am concerned Gage is more "normal" than MANY other kids I know. Gage is by far the most loving child I know...I know friends with kids that have to force a hug and kiss out of their children. I dont even ask..he just comes over and plants one on me because he wants to show that affection. Why would I ever want to change that? The way I see it, I have a good thing going and am really lucky to have the child I have, Autism and all. I have finally embraced the situation and am glad I have. Of course I have grieved..and at times still get a little "woe is me" moment...but any parent that have children with any type of difficulty would too. I feel like I would be greatful to have another child remotly like Gage, Autistic or not. Its amazing, he is actually better behaved that alot of kids that aren't on the spectrum. You would think the opposite is most cases. Either way, Gage is amazing and I am lucky to have the little booger.

Tuesday, February 17, 2009

Holland?

I found this...and it makes alot of sence to me so I thought I would share. I know alot of people disagree with it...but I like it, so deal with it. :)

-Barbie




Welcome to Holland


I am often asked to describe the experience of raising a child with
a disability – to try to help people who have not shared that unique
experience to understand it, to imagine how it would feel. It's like
this…




When you're going to have a baby, it's like planning a fabulous
vacation trip – to Italy. You buy a bunch of guidebooks and make your
wonderful plans. The Coliseum, the Michelangelo David, the gondolas in
Venice. You may learn some handy phrases in Italian. It's all very
exciting.




After months of eager anticipation, the day finally arrives. You
pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes in and says, "Welcome to Holland."




"Holland?!" you say. "What do you mean, Holland?" I signed up
for Italy! I'm supposed to be in Italy. All my life I've dreamed of
going to Italy.




But there's been a change in the flight plan. They've landed in Holland and there you must stay.




The important thing is that they haven't taken you to some
horrible, disgusting, filthy place, full of pestilence, famine and
disease. It's just a different place.




So you must go out and buy a new guidebook. And you must learn a
whole new language. And you will meet a whole new group of people you
would never have met.




It's just a different place. It's slower paced than Italy, less
flashy than Italy. But after you've been there for a while and you
catch your breath, you look around, and you begin to notice that
Holland has windmills, Holland has tulips, Holland even has Rembrandts.





But everyone you know is busy coming and going from Italy, and
they're all bragging about what a wonderful time they had there. And
for the rest of your life you will say, "Yes, that's where I was
supposed to go. That's what I had planned."




The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.




But if you spend your life mourning the fact that you didn't get
to Italy, you may never be free to enjoy the very special, the very
lovely things about Holland.





Written by Emily Perl Kingsley