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.

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

27 is old...in dog years

So...it's official. I have been 27 for 11 days now. No, I know that its not old old, but still...it's just that much closer to 30, which is just that much closer to death. Morbid, yes...but true..and for someone terriified of all things death, it's scary. My birthday was pretty uneventful. I was in my pajamas all day, Gage had his different therapies, I finally got dressed long enough to go to dinner...then back in the pj's and watched a movie. Wow am I exciting or what? I know..it's hard to take it all in. I was ok with unevenful though, I have no energy for evenful. Thank you to everyone that called me or sent me a message wishing me a happy birthday :) I'll hit you guys up on yours, promise.
So, a little news...I offically have a wedding to do on August 29th. So thats exciting. I just need to buy a new lens and second flash for my other camera. I still havent advertised or anything so I dont expect alot of business. I prefer right now to just get my feet wet and do it casually. That is until I can build a stronger wedding portfolio. I just need to find a second shooter now. I need someone I can trust and that would take pictures the same way I would. I finally have a price list all set up for wedding and portraits, and I think I finally have an idea of how I want to shoot weddings. I mean, I had a idea before but never having done one before Sara's it was an intresting expierence. I learned what I needed to have, what I didnt and what I needed to do ahead of time. As well as what it actually costs me, the time involved and that fun stuff. I'm still a big softy though, lol. I say I'm staying for 5 hours...but I stay longer. I know its because I'm doing things for people I know. I need to stop that. I also need to buy background so I can do more than on location portraits. I need a Mac too. So if anyone has a space Mac..think of your old pal Barbie .
On to some Gage news. Gage is doing great! I have been out of work since November with him because of my surgery. Since then I have been able to give him more routine and a kind of set schedule. Plus I have been working with him alot with his sign language and other things the therapist are doing with him. I am glad to say that he is now speaking alot more. He is still not up to a 2 y/o level, but he wont be for some time. On Christmas day, he said his name! I even was able to catch it on tape. That was the best Christmas present ever. I started tearing up instantly. He is also saying alot more. Gage can now say nana(banana), MAAAAA(that would be his way of calling me), Dah ee(daddy), yeah, no, no way, hi, coral(from finding nemo), mack(from cars), Dory (from nemo), naaah, nie (nice), bababa(bad bad bad), go, away (yes, he likes to put those to together), momo (nemo) and a few others here and there. It may not seem like alot for a 2 1/2 year old, but when you go from saying almost nothing at all except for some babbles it's huge. He even has put a two words together a few times. He told his speech therapist to "go way" when he was coming in the door. I though it was hilarious, luckly so didnt his therapist. Gage is doing really well with his sign language too. He can now sign "all done" and "more" we are working on "want". Thats a tough one for him though. He is getting better with his sensory issues too. He will now let me brush his teeth and says "Ahhhh" and opens his mouth in the process, bathing is better..sometimes the hair washing can still be a struggle, but over all its going well. I seriously think that he is doing better because he has consistancy. It makes me think "Do I want to go back to work?" I'm just so glad he is progressing. not regressing. It makes me hopeful that Gage will be speaking more and more. It would be great to have a conversation with him, even if it was as simple as "Want eat". I would be happy as can be for him to tell me what he wants. I decided to try potty training soon. I'm going to start keeping track of his pee's and get him a potty. He may not be able to verbalize much but I know he is smart, and could understand what is going on. I have no doubt about that. He is one smart cookie.
I suppose I should go now, Gage is napping. I really should to laundry..I hate it, but we dont have much left to wear, lol. So off to fold and sort I go.

Random things at 4 am

So, it is 4:40 am...You may be asking yourself "Why in the heck is she still awake" well...lately I've been having a little insomnia and just cant get myself to fall asleep at a normal time. This time though, I stayed up to finish some laundry for Justin so he would have some work clothes. I know, I'm so darn sweet. Well, there was that and just for some reason I couldnt get my mind to stop working. I finally decided I was tired and tried to go to bed around 2. I layed in bed for what seemed like 10 minutes and heard random noises. Of course, I starting really listening and imaging someone is downstairs and then my mind starts really going. Then I hear a few thumps. I layed there a little longer and decided I better go check on Gage. Maybe he rolled off his bed. So, I get up and check on him. Sure enough it was him, he didnt fall off but was laying there with the pillow over his head and his blanket a little too over his face for my liking. Maybe I'm a little too afraid of suffocation. So, I took the pillow, which he fought for, but I won. He was asleep while fighting... or so I thought. I look down after my pillow victory to see a little devilish grin looking back up at me. So I figure I'll lay with him and get him back to sleep....well that didnt work. He woke up around 3 and after about an hour of him rolling around, petting my head and saying hi over and over to me we came downstairs. So now we're watching The Backyardigans and hes happy as can be. I'm actually so tired that I'm not even tired anymore. Sitting here though got me thinking, well I actually was thinking this when I was lying in bed, but whatever.
I was thinking about one of my last blogs, the one about Gage. I know I'm not angry now. I actually wasnt really angry for long. I allowed myself to be mad and "greve" for about 2 days-if that. I realized that I didnt lose anything. Gage is still Gage, he is no different than he ever was. I dont know any other Gage, so I'm not losing what he might not be or anything like that. I'm actually learning more about who Gage is and understanding him alot better than I ever could have without this diagnosis. What I mean is, autism doesnt define him, but learning about it helps alot to know why he does some of the things he does. It has helped me gain more patence and understanding of other peoples kids too. I realize that some of Gage's things are just plain ol' 2 year old things and some are not. His little fits because he found a Christmas present and he cant have it now or because he cant get his way...well thats the 2 year old talking. The kicking and crying because my mother left the room...again, the 2 year old. When he's in the car and starts laughing and making the funnest face ever, then starts moving his arms up in down...that would be the autism. It's called stimming, and boy does Gage ever stim. Its not a bad thing, its a soothing thing for him. Ever see when Gage gets "excited" and makes his little squeals and moves his arms like hes just the most excited boy ever? Thats him stimming. I think its adorable and if it soothes him, let him go for it. Of course Gage has his bad days. In compairison to some, they are nothing. He rarely has tantrums, is very loving-I get about 100 kisses and hugs a day just because, he has one great sense of humor and likes to be a little turd, and loves to hang out. The only real chalenges each day are his speech and his diet.
Gage is a very fussy eater and its hard to get him to eat much more than hot dogs, sausage, chicken(only breaded, he wont touch anything else), granola bars, cereal bars, peanut butter sandwiches, cereal and funyons. It makes for a limited meal menu thats for sure. I'm always worried hes not getting enough to eat, or enough nutrients. I need to find a way to sneak what he is missing in the foods he will eat. He used to eat pasta but now he wont touch it. I think its a texture thing. He wont use utensils, well maybe not wont-but maybe cant. I think he could but he doesnt. So any food that is wet, he wont eat because he doesnt like to touch it.
It's still a little sad to think that he used to say different things and has now lost them. He goes through phases where he will say one thing all the time, and then its gone. He used to say Ma and De(mom and dad), bye, no, Pablo(a backyardigan) and a few other things, but now it is few and far between. Occationaly he will let out a few things like ball, nana(banana), go-go-go, momo(nemo), roral(his way of saying Coral, again from Nemo-when he loses his wife) but it depends. Its so hard to unlock his words. You can tell he so badly wants to speak but just cant figure out how. I truly believe he knows the words but its almost like they are in a locked box and he doesnt have the key to open it.
He really loves music and art. Which of course suits me just fine. He loves to color and listen to any kind of music. The only thing that sucks...he doesnt like purple. Can you believe that?!? I guess he didnt get that gene..lol. His occupational therapist tried to give him a purple crayon and he screamed until she gave him a different color. Once she did then everything was fine. He wanted a blue crayon....little turd.
Of course I would just love one day for Gage to come out with a clear sentence, or even better yet to be undiagnosed...but we'll see what happens. I am getting sick of people who dont understand and just say well maybe he will snap out of it. Its not like that people! Its not like I can just turn an autism switch off and on. If I could dont you think it would be glued in the off position? Luckly we have all been lucky enough to be surrounded by people that are understanding and not treating him any differently. Everyone treats him just as Gage, nothing more, nothing less. I will say that I am so glad that Gage is diagnosed with the most mild form and doesnt really show any signs of anything more extreme.
He recieves so many services right now though that its hard to do much of anything. Usually 2-3 visits each day, just about every day. I wish we had more time to go and do things. It kind of makes me feel like I'm denying him fun things because we're always busy with other things. I feel like I should be bringing him to Mc Donalds to play at the play land, Santa's workshop, playgroups, outside to play in the snow...or just to do something. Other times I just feel like a bad mom because I'm so tired that when we could do something I just dont want to leave. Having the cast hasnt helped either. I feel like I should be talking to him more, playing more..just interacting more with him. I am just so drained that I feel like its not enough. I feel like I need to be doing my own therapy when the therapists are here...I know that that is more than alot do, but it doesnt seem like I'm doing what I need to do. I dont know.
I do know that is is 5:30 and this is VERY long...so I should stop now...The Backyardigans are done and now we are watching Oobi....fun times

Venting session...just a warning

So, this is for me to vent...I already typed it once and it deleted...so now I'm REALLY ready to vent...
Just a warning...I very well may offend some of you...so just know you were warned.
So, here we go...Ok so some of you may know that Gage has been receiving Early Intervention services for about 8 months now. He gets speech therapy, special instruction and occupational therapy.They have helped alot. Gage actually is signing "more" for when he wants something and is learning others. He is also starting to speak alot more. He still is not speaking like an average 2 year old, be hes talking. On the suggestion of his therapists we took Gage to a developmental evaluation in Albany. Justin and I both had an idea of what the specialist would say, because we have been doing tons of research on all types of speech delays and sensory issues. We of course were just hoping for the best, like anyone would. Suprisingly the specialist was able to diagnosis him that day. She has seen TONS of kids, so she knows what shes doing. We weren't really prepaired for the answer..even though we expected it.
Gage was diagnosed with Autism Spectrum Disorder. It is also called PDD-NOS. Which is a fancy medical way of saying, "Yes, your son is autistic but we dont not the severity yet, so here...use this fancy term until we can figure it out". Now like I said, Justin and I expected it because we have done alot of research on stuff but we were in no way prepaired for it. I mean he does have some traits, not all. He does spin wheels, has poor eye contact, has non-purposeful play and when around others, likes to observe them rather than play in most cases. Then again though, he loves to cuddle, is very affectionate , very active, and will interact with people sometimes-depends on the person.
Now...here is where the offending starts, so you might want to stop reading...
I am angry...very angry
Now, logically I know it could be MUCH, MUCH worse...but no parent wants their child to have a hard booger let alone autism. I dont mean at all that we have it harder than anyone. It could of course be much worse, Gage could be disabled physically, or who knows what else. I would never say that we are so horribly worse off, because the fact of the matter is we arnt. We have a happy, loving little boy that has pretty good health. Still though...I am so angry that such a happy, loving, innocent, darn good looking, good natured, curious little boy has to have this. What in the heck did he do to deserve it? Not a thing! Why is it that some cracked up hooker can have perfectly "normal" babies that she doesnt even care about, she just wants her goverment money. She can have 15 kids that she doesnt give a crap about, she just wants her surplus cheese and check and those poor kids are healthy. Then Gage, who has parents that want him more than anything has this happen. I know, I know...this could be why it happend, because we would actually put in the effort for Gage where as Crack Momma wouldnt, but still...how fair is that?
Now, I dont mean any offence to those of you that pray, or believe in some sort of relgion...believe what you want to believe and I hope it helps you...I have been told a few times "Oh, you should pray, that will help" Well...no disrespect to those of you that do, but you know what I say to that? Bullcrap and a big HELL NO! I have no belief in any higher power...any tiny bit that I had in me is gone. Maybe I'm too cynical, and this is why I warned you in the beginning of this blog. If there is some higher power up there, some god then why did this happen? Why pray, its already been done. If there is some god up there then this wouldnt have happend to an innocent, loving child. I know some say "Oh there is a plan for everyone, blah blah blah" well...tell me, is this "plan" include the possiblity that Gage may never live up to his potental? He may never go to his own prom, be a football all-star, date a hot cheerleader and give me gorgeous grandbabies? Is that the plan? Or is the plan that Gage may never say his wants and needs, he may never say "Mommy, I love you". Is that the plan, is that fair? I dont think so, not fair at all. So your plan can bite my pale butt. I think this god needs to get better instructions for this "plan" because is seems to be that some of the blueprints are missing. Again, I dont mean any offence to those of you that believe, if you have faith great for you, I just have none. I have lost it all. No offence to the crack mommas out there too...get all the money you can, keep pumping out those kids. I just know what its not right, someone so wonderful should have do deal with this. I mean, look at Gage...seriouslly, look at him. Hes adorable, I know it, you know it...I dont mean to sound cocky, but you cant look at him and not think hes adorable. Is that why this has happend? He is so darn cute that something on the inside had to give? Well...I'd rather take an imperfection...give the kid a wart or something! Live his brain alone! Why does such a little guy have to have such a mysterious disorder? It isnt fair and I'm angry.
Now, maybe it is too soon to think things, but I cant help it. The fact is, Gage is too young to know where on the spectrum he falls. The specialist did say that he is very intelligent. She is hopeful that is could be a very mild case. She did say he was on the milder sided of the spectrum. She also said that because we started services so young and because he is so smart that is could become Asbergers of Gage could even outgrow it all together. Of course thats what were are hoping for, but the opposite could happen too. He could decline and go on the other side of the spectrum. Thats the scarry part, we dont know. Justin and I have read alot on it, and soon will be trying a special diet that is thought to help autisic children. It is a gluten-free/casesin-free diet. I have read on it, and it seems do-able. Even it if isnt, its for Gage and we're going to help him however we can.
So, for now we are just working with Gage and trying to improve his vocabulary and social skills. I just dont want anyone to treat him differently. I think I would have to beat someone that did. He is still Gage. Still playful, funny cute as can be Gage. I dont want him labeled, he doesnt deserve the judgement that comes with it.
Sorry if I did offend with any of my god rant, but its just how I feel right now. I dont want sympathy, I dont think Gage needs pity. I just felt the need to vent a little. He would love some play dates-the socialization would be good for him, and me too...so let me know. I personally would love a play date...even if there wernt any kids there :o)