Too tired to function..

It's been a busy week, well its always busy it seems..but this one was particularly busy. Gage had is usual sessions, Speech Therapy, Special Instruction and OT. So my days are usually full from that alone because the first two come 4 times a week and OT is twice. They want to bump him up to 5 times a week for the first two. I dont know if we are going to do it or not yet..as it is there are no days off. I tried to get a day off but with scheduling conflicts it didnt happen. I know Gage needs the therapy and it is helping alot..but 5 times a week! The poor kid can never have a play date or just go anywhere. I feel so guilty that I never bring Gage anywhere. He needs socialization with other kids his age so badly. A typical day goes like this:

Wake up anywhere from 8:30-9:00 (unless its Friday, they he wakes up at 7:45)
Krystal(SI teacher) comes from 9:30-10:15
Breakfast(if he doesnt eat when Krystal is here)
Usually play/watch Little Einsteins for a little bit so he has some down time after therapy
Get changed/dressed..if I'm feeling froggy he gets a morning bath
Maribeth(OT) comes from 12-12:45
Tony(speech) comes depending on the day around 1-2
Lunch is fit in between therapy
Nap (this kid naps from like 1:30/2:00 until sometimes almost 5!)(if he doesnt get his "full" nap there is hell to pay)
After nap usually he wakes up, plays a little more
Dinner
A little more playtime
Bed


When I can, which isnt always I fit in times to go here and there..but not usually. Now writing this down it seems like I have more time than I think to do things..but it never follows how I put it down here. In between all of that I have to find time to clean, get myself ready, laundry(which always gets forgotten), plus whatever for the day.

It gets tiring..I can only imagine how Gage feels. I dont think we can do 5 times a week. I want Gage to gave a day to sleep in. I usually cant get him to sleep before 10:30pm..I know, thats late..and with such a long nap it would explain it. Without that nap though, Gage is miserable..and when baby isnt happy, NO one is happy. Plus..sometimes I sneak one with him :) I have woken him up early from his naps, but it takes him almost 45 minutes just to wake up if I wake him up early. So, it really defeats the purpose.

I feel like we both need one day to make appointments, play dates, sleep in, just whatever we want to do that day. The weekends are too hard because nothing is open(like business stuff/doctors) so that doesnt work..Plus sometimes he has sessions on Saturdays.

Oh the good side though, therapy is going really well for Gage. I think he is thriving. Just in the past month he is doing alot more. Just the other day he asked me "Why?". It was adorable. He is getting goofier by the day, which those of you that know Gage know he was already pretty goofy. He has been particularly attached to me this past week. It makes me wonder how he will be when I go to visit Brittany in Long Island in April. I'll be gone from the 9th-13th. It'll be odd to be away, but I think I need the vacation. I never go anywhere or do anything. I cant with Gage's schedule. Everyday his schedule is different..the example I gave is just an average Monday. Tuesday-Friday are all different. I cant wait to go to Chinatown! Purses here I come!!! :)

Gage has his 6 month evaluation on friday. This eval. is for Early Intervention..they see how he is doing and if his services get bumped up or taken away. I already know he is eligible to get bumped up..but I want to know what they think of his progress. In April we go down to Albany to get evaluated again by the pediatric psychologist(or whatever she is) to see how he is progressing. This is the doctor that first diagnosed him. Shes a little odd to say the least, she doesnt hold her tongue for anyone. Very to the point and blunt. Luckily I havent had a run in with her yet..she hasnt been rude...yet. I have heard stories though. I really am interested to see what she says about him. Of course I am sure she doesnt take into consideration that he is 2 1/2, she is a stranger and we drove over 2 hours to go see her. Because you know a 2 hour car ride wont make a kid cranky at all...note the sarcasm. I think no matter what though, Justin, me, Gage's therapist and family see the changes in him. We know he is progressing and thats what matters.

Oh! I almost forgot! So yesterday was busy, busy, busy! Gage had a doctors appointment after his special instruction session..so I busted butt to get us ready and there for 10:40. Gage is getting tested for certain food allergies. Hes getting tested for allergies to milk, wheat and he is getting a test for Celiac. I carry the gene for Celiac so he could inherit it from me(lucky Gage). Now I know alot of stomach problems seem to go hand in hand with Autism(or so I have been told) but I have enough issues with stomach problems that it could be genetic too. So I am seeing what is going on before I do anything. He is getting ALOT of gas problems and I hate to see him in pain anymore. Plus his skin is so dry, the doctor said its eczema but he also said milk allergy can cause that. Of course I wont be bringing him to get is blood drawn, that will be Justin's job. There is NO way I could do that. I could cry and because I used to draw blood myself, I would be really annoyed if things were not done just right with my little man. So its best for all involved that I wait in the car and then come swooping in for the hugs and kisses.

So thats all really for now. I am working on cleaning this house and getting it organized..its going to take forever. Mostly because I am working at turtle(I like Turtles!) speed but also because I am fitting in organizing and cleaning where I can during the day.

I dont have all my pictures set here yet..but here is one from St. Patricks Day..

Just a quick post....

I figure while I'm sitting here watching The Princess Bride(Inconceivable!) I'll write up a little update.

Today was pretty blah, avoided housework, played with Gage..just the usual. I wanted to just write to let everyone know how well Gage is doing. He is imitating more and more each day, he's really trying to use his words. Just today he wanted to get out of his highchair and while signing "down" he actually said it. Yesterday Gage, Justin and I went to K-Mart to get a few of these baskets they have for sale there and Justin went to the bathroom. So Gage and I were walking around the baby section, getting bored so I was talking to Gage and asking him where Daddy is. I asked him a few times and at one point I said "Gage, where Daddy go?" and Gage responded as clear as can be "Don't know". Needless to say I was speechless, he's never said that before. I honestly think that his different therapies and Justin and I not catering to him as much are really helping. He just in these last few months have been thriving, he may not be as advanced according to his IEP, but seeing him in person it is a HUGE improvement. He still has a bit to go, but I think with more socialization, constant stimulation, therapy sessions and his determination that he will just keep doing better. Of course I already think he is perfect...but a little more speech cant hurt :)

Justin and I were talking last night and we were both thinking the same thing. If you look at Gage and watch him you wouldnt think he was on the spectrum. I've heard that from alot of people and just the other day I was told the same thing during a playdate with Jack and Danielle. It got me thinking more and more, so I was talking to him and its odd. There are so many things that fit and so many that dont. I know not all children on the spectrum are the same and every case is so varied, but there is just so much that doesnt fit. I dont want to say that I think the diagnosis is wrong, but I'm almost thinking we should get another one just to satisfy the questions. I mean, yes, Gage's speech is lagging..but I've been told by MANY people that they have/know kids that havent spoken unil they were 4 years old. His eye contact can vary, but what shy kid looks strangers in the eye the first time they see them? Gage spins, well so dont I, so dont alot of kids. Gage doesnt do it constantly, if he has a toy that has a propeller for example, he will spin it off and on. He will also fly it and just carry it too. Gage does seek pressure, he is a very sensory orientated kid, I wont deny that at all. The kid loves to be on his head, he's a little acrobat for sure. He has the tendency to stim when he is very excited/happy or overstimulated/tired. He doesnt do it very often though. Now, I know reading that you might think "Well there you go Barbie, you just said if for yourself. He has alot of the signs." True, like I said, he does..but here are somethings that I have been told are not typical for kids on the spectrum.

Gage is VERY affectionate, like he will kiss strangers. He has always been like this. If I tell him to kiss Bob the janitor, chances are he will. Of course he can be picky about that. He tends to only kiss the cute guys and girls(thats my boy!). He seeks attention and loves to be tickled, held, played with. He is very gentle and caring. If someone on a cartoon is sad or sad music is playing he will get emotional and sometimes cry. He is very sensitive. He doesnt care about routine, he does well with or without one. If he misses a nap, he is usually alright. Most kids thrive on a routine, so you can use that as something that only kids on the spectrum need. He is very animated and goofy..again with the seeking attention. He will just do some of the silliest things to make you laugh. I swear he does it on purpose.

I dont know what to think about it really, it fits but it doesnt. My mind is going back and forth over it. Gage to me, seems to have more sensory things than anything. I'm not a doctor though, so who knows.

I suppose I'll just go back to watching Princess Bride and contemplate all of this in the morning.

So...here we go..

Alright, this is my first actual blog site. Yes, I have old posts on here..but thats because I wanted to add those so when I did new ones people would have a little insite on what was going on before. I wasnt really a very constant blogger but I think now that I dont work I just might be. Not that I think anyone is going to be reading these anyway. They are more for me and so I can look back, see how far Gage and I have come. Just reposting what I have I realized I pretty quickly went from devastation to acceptance. Its odd really. So..incase you havent noticed I am horrible with punctuation and I have no intention on getting any better..hehe. I use my little pauses.....<--- like that one, constantly. So you might want to get used to it or you'll go nuts with this blog. I know I posed old blogs but let me just give you a little more info. Oh, by the way...I type alot of the times like I am talking to someone so the "you" I mention is whoever...its just easier for me to type my thoughts like that, like a conversation. Again, I am far from an english major.

Anyway..here is a little back story on me, Gage and everything else for those of you that dont know it already.

Lets start with me:

Barbie-
I'm 27, I finally dont work anymore..I stay with Gage all day, which can be enough work sometimes. I love all things photography, cooking, baking and anything artsy really. I am a Guitar Hero enthusiast(and I might say I kick some booty), I am completely random(you'll learn that soon), I'm overly sensitive, a junk food junkie, love kids(especially little fat ones), I am extremley picky with foods(textures, smells), I VERY rarely eat beef(it makes me gag a little bit and even when its in, say a taco..I scrape all the meat out), I think that garlic makes everything taste better, love Amaretto mudslides and have been with the same person since 11th grade. Oh...and it seems like I am ALWAYS sick.

Justin-
He's my old man(hehe), 27(but older than me..haha) and Gage's De(thats how he says daddy). He is an EMT extraordinaire and loves all things medical. He also is a Red Sox fan(back off Yankee fans), one heck of an air guitarist, can make a mean steak(I suppose, I dont eat that poop) and has a freakishly large big toe(he'd hate that I put that on here..hehe)

Now..most importantly...

Gage-
Gage Michael O'Neil(hence the nickname Oatmeal) was born on August 10, 2006. He is my gentle giant. He is only 2 1/2 right now but is over 3ft tall. He has beautiful big green/brown eyes and a giggle that is to die for. He has my crooked little toe and Justin's big toe, the poor kid will never be a foot model. Gage loves bananas, funyons and chocolate milk. His new obsession is Little Einsteins, he brings a rocket with him everywhere we go. Gage loves to dance, listen to us sing songs from different cartoons, hug and kiss and of course stand on his head. He is truly a little monkey. He is just amazing to watch everyday.

Gage was diagnosed with PDD-NOS but it's odd really. He does show alot of the typical symptoms. He stims, spins, has some issues with social interaction, has certain sensory issues and his speech is not where it should be for his age...but in some ways he is so different that those typical symptoms. He is VERY loving, with almost anyone really. He loves to kiss and hug. He give eye contact with alot of people, but is timid(like alot of kids) around strangers. He is very gentle and caring. He like attention, rough housing and being tickled. He is quite the goof ball.

I could go on and on about him...but you'll learn more as I go. Besides I dont want to make this a 14 page blog all about how awesome Gage is..because I could!

Oh..on a random note..I think its funny that spell check wanted to change funyons to bunyons...hehe.

Gage and Daddy rocking out some Guitar Hero

Being goofy around the house
Mr. Sunburst
His soon to be album cover
Therapy with Tony and Krystal

Walk it out...walk it out...

Here is the walk that is going on in town. Gage's speech therapist helped to create it. I'll be taking the photos for the event :) Come stop by, walk, donate...every little bit helps! Show your support!


The 2009 Autism Awareness Walk

2009 Autism Awareness Walk
Benefiting Nexus

When: Sunday, April 19th, 2009
Where: PARC Oval Plattsburgh, NY
Time: 10:00am - Registration & Activities
11:00am - Walk Begins

www.autismawarenesswalk.org/

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.