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/