This is more of a record post...to look back and see the things he was doing. It was one of those days where he did alot of things that impressed me.
But the day started out...not so great. You see, there's a seasonal change taking place and that means new articles of clothing. So in our house, that means a fight to get his jacket on. I carried him out to the van flailing and screaming. Thank god the neighbours know us well enough to not think anything of it. He would rip out chunks of my hair and shout "ALLDONE! BYE BYE JA-ETT!" And cried until we got to school. Once the horrific jacket was removed from his body - he was absolutely fine. So I told them to take him outside in the playground without the jacket if they needed to. And of course - they needed to. No biggie.

So he had a great morning at school. My Dad came by for a visit after we got back from preschool. It took Cuy awhile to come down to see Granda, but once he did he was a showoff. He sang songs and he did some dancing for us (Cuyler...not Granda!!) and he did the hearty, big bellied "Noooooooobody!" laugh. (It's from a local commercial - we say "Noooooooooooobody!" and he laughs his frikkin head off!)

After dinner we went outside. Cuy took my hand and we walked up and down the sidewalk and he was singing. It took me a second to figure it out but he was singing - and doing the hand signals - to Wheels on the Bus, but he was singing "The driver on the bus says move on back, move on back, move back......."
Then Sean had them out playing road hockey (okay, driveway hockey). He took Seans hand and said "house". Sean let him and and he ran into me and said "Change bum."
"Change bum?" I asked
Then he grabbed my hand and pulled me to the stairs and said "Bath!" Okay, it's bathtime!
After bath he said "Buss tee" And he let me brush his teeth - properly! Probably the cleanest they've ever been!

I think it's funny that the only body part that he can really indentify is his weiner. He was grabbing it in the tub and I asked "What's that?"
"Peeeenis!" Typical guy.
And this afternoon he did something which I thought was amazing. He was on the couch and he looked at me and said "Tooo!"
"Toooo? Are you 2?" I asked him.
"Toooo! Tooooo!" he repeated.
He came over and sat on my lap and I could then smell it.
He farted.
And only the mother of a child with ASD can understand my elation at the fact that he acknowledged that he tooted. Everytime he passes wind I say "You tooted!" Well this time he got it. He realized that he tooted and he told me. It just showed that he's aware of what his body is doing, which is huge.
And bedtime. I love bedtime. I lie in his bed with him and read a story of his choosing. It's either Franklin Plays Hockey or Elmo Says Achoo. Tonight was Elmo. i love when he picks Elmo because t's such a short book. So I read it and hand it to him when I'm done. He then shoves me out of his bed and says "Byeee! Night night"
I say "Night night"
He says "Seeyoo inna mownee" (See you in the morning!) I love it!


Temporary comment section here

This is the face of autism
I think it's a different face than what it used to be.

This is an issue that has been on mind alot since the diagnosis. And it was at the forefront today.
Sean's boss's mother passed away and we went to the visitation this afternoon. What I had felt all along was proven today.
As we sat in the pew after we paid our respects and visited with the family, I noticed something. People react and respond to us the same way they do to people at funerals. "I'm so sorry...how are you doing?" "My condolences...how are you guys holding up?"
Someone actually did that - offered their condolences. I said to him "Cuyler didn't die. He was given a diagnosis that will get him the help he needs to succeed." Now, in this guys defence, he volunteers with autistic adults. Who were diagnosed 25 - 30 years ago. Back when an autism diagnosis meant a grim future, with no hope of being a successful and productive member of society. Back when the most popular and only real option was to institutionalize.
Those just are not options today. Does this child fit that description?

Like I said in previous posts, I couldn't be prouder to be his Mum. I proudly display my "autism awareness" ribbon on my van and I wear my Floortime bracelet every day. I like and appreciate when people ask questions about his autism - and more importantly - about Cuyler.
I don't blame people for not really knowing how to react or respond. And ya - sometimes it is tough having a child with autism. And sometimes I'm sad and scared. But that's more for sad and scared for me. Cuyler doesn't worry about his future. I do.
Now we make an effort to live our life day by day and if we can go to bed at night and know that he laughed and smiled more than he was angry and frustrated - then it was a good day.
I have run into 2 different parents whose children I worked with before I had kids - both children had autism. On each occasion, when I told them about Cuylers dx, the mothers faces dropped and were horrified. One of them began to well up and I had to convince her that things were "good" and that we were really REALLY ok!
So look at his face and into his eyes...and don't tell me your sorry or offer your condolences.

I know it's hard to know what to say. But life is good. He is good. He is happy (most of the time) and healthy and his prognosis is really good. We have a ways to go - but we'll get there. Our physiotherapist said "You'll get out of him, what you put into him." So we're giving it all we've got.

It's been suggested to me to provide something for comments since my blog comments are disabled.

I'm just going to post quickly about what a great day we had.
We were at the in-laws for Denise and Oma's (Seans sister and Grandma) birthday. It was a bit of a family reunion as well. There was a TON of people there - and he did great.

He played and he laughed and he danced and bounced. And I think that everyone that looked at him - smiled because of him. I was so proud and impressed by his ability to manage so well in a very busy environment.
I only wish that Seans cousins lived closer. They are these amazing kids (12, 15 & 18). The 15 y/o just meshed with Cuyler. For a few minutes, we all just sat and watched him grab Josh's hand and pull him around, jump on him, look up at him and smile.
I would sooo use my respite money to hire that boy to come and work with Cuyler!! But they're too far away.
Our one issue was with the birthday cake. Until he went gluten and casein free, he never bothered with cake. But now - he WANTS cake whenever there's one around. So he saw the cake come out, we sang (and so did he "Oppy Booday too ooo!" - music to our ears) then he dumped his hand into the cake and took a mouthful of icing. Yikes. So we folded and gave him a popsicle. Which really is no better for his tummy than the gluten and casein are (sugar feeds the yeast). But he was about to have a meltdown and we wanted to avoid that - we're such suckers. It was so heartbreaking, him sitting on the grass crying his eyes out wailing "Oppy Booday!!" (that's how he refers to cake...very rarely he'll say cake)
I was so proud that he is my son. I wouldn't want him any other way. He just brings joy to people. It was nice that people were asking alot of questions about his autism. I like to educate people and let them know that autism isn't a bad thing and that he is doing great and has a load of potential to meet.

Cam was so beat when we got home. Those big boys could not keep up with him. They'd ask for a time out, and he'd say no. "There's no such thing as time outs!"
He was a gem too! So funny and charming to everyone. We got alot of compliments on how smart, clever, fun and just plain good he is.

Gosh...I'm just so proud to be their Mom.

Pics tomorrow.

Wow...well, the stupidest thing made my blog all wacky.
A few posts ago I put a line of asterisks across as a divider because I was adding a paragraph that I wanted separated.
Well that line of asterisks threw the entire template out of order.
And I figured it out. After an argument with Sean (brought on by my Irish temper) and 2 hours of determination...I was gonna stay up all night if I had too.
Okay - whoever you are that just left a comment - it just popped up this second! Thanks.
Back to business...
Cuyler is now off gluten, casein, yeast and sugar. The yeast and sugar have been since yesterday. And I must say - he's been a trooper. You take me off sugar - I take your eyes out. He's been quieter than usual and more sleepy (had 2 ten minutes snoozes today), but he's been off his night time schedule. Our reason for this new change is to see if we can get a firm, formed poop out of him. He has not had one since May.
He hasn't had a Mah-a-ko ("popsicle" in Cuy speak) in 2 days. That's a first. That and fruit leathers....those were the 2 things he had once everyday. I can't believe he's not asked for either. I spoke to Cam about it and he understands that Cuyler can't have popsicles anymore, so he only asks for his when Cuyler is not around. Things like his make me grateful for Cam and really reinforces that we had him first for a reason. He's such a great big brother.

I am very happy to report that we had a great speech appt on Thursday and I DON'T GO BACK!!! She will start to consult at the preschool, so that saves me 1 out of town drive! The OT is also going to start consulting at the preschool. I really think that things are going to totally ease up now that they are both settled into their schools. And what a relief for Sean. He has been to EVERY appointment we've had with Cuy and all of Cam kindergarten visits. And has lately gotten some flack for it at work. I think he's looking forward to an entire month without an appointment. I know I am.
I am very proud of Sean for becoming the Dad he has. There is absolutely no way I could have gotten thru the last 3 year without him. He puts me and the kids first, as much as I goad him about coming home early every day from work - it's all because I want to hang out with him.

It's late and I should be sleeping.

**yawn**

UPDATE - comments are disabled for a few days.

I was supposed to go see my Dad this morning...but at 10:30, Cuyler decided to go to sleep.
He must be making up for the night before last when he was up until 1am for no apparent reason. He went down great last night...took his usual poop and woke up before 6:30 this morning. So I think he's just catching up on his sleep. We'll go see Granda after lunch.

So the poops are still nasty and I think we are going to try and remove yeast and sugar from his diet. I think it's impossible to do. But I also thought that about gluten and casein. And he's been off of those since May...well, except for the cheeseburger he ate yesterday. I'm surprised he didn't have a complete meltdown after ingesting cheese and a bun. But I popped some digestive enzymes into him as soon as I could. Who knows if that helped. But he did okay.

These are the things that I am referring to when I say that I never expected this to be my life. I never thought I'd have a kid on one of those whacked out, quacked out diets. I am reading book after book on autsim or dietary interventions. I am constantly looking online for different, more useful info on the diet.
I have a binder that is nearing the "full" mark with all of the various reports we have from various sources, programs and services he's been in. The first one is dated March 23 2003. The most recent I put in yesterday. As I put it in, I thought "I have nothing like this for Cam" Then I wondered what I would be doing if we didn't have a child with autism.

Would I be working? Maybe.
Would my life be easier? Definately.
Would it be better? Doubt it.

I was on a message board and there was a discussion about it. The discussion was sort of about changing the affected person to fit into the world. And there is a mom on the board who has aspergers. Her children are fine. Her perspective is so very different from mine. Hers as a person with aspergers. Mine as the mother of a child with asd...do I want to change him? No. I want to change his life. By making it an easier world to live in.
It's almost like me wanting to scratch the freckles off of Cams nose. So people won't make fun of him. His freckles are part of who he is. That's like Cuyler and the asd. He wouldn't be who he is without it the dx. He's a pretty neat kid. And he's so much fun. So would life be easier without his autism - yes. Would it be better - I very much doubt it.
On some level, I am grateful for his diagnosis. Cuyler has made Sean and I better and more capable parents, he has given Cam an awareness about people that not many 4 yr olds have. And we would not have this wonderful, unique dynamic to our family that not many people I know have.
Plus...if he weren't autistic, he would probably know that he wasn't a real magician. It's more fun thinking you are!

It is moments like this one and days like today where I can't stand my child...I hate my life and I hate autism.
He has been pissy all morning. I have tried to stay calm for him and for Cam. But I'm about to snap and it's only 10:24am.
He has cried for "juicebox" for an hour. And he wants nothing I offer and I have tried to offer everything remotely related to "juice box".
He has ripped out 3 handfuls of my hair. Smacked me in the face a few times and launched a toy into my face. My cheek is throbbing now.
And I am trying to stay calm - when all I want to do his smack him back. Rip his hair out. Throw the toy back at him.
So much for a fun day with the boys. I wanted to take them swimming, but today is one of those days where I am leery of leaving the house with him. How will he behave and how will people react to his behaviour?
I have come to accept that people who don't know us judge my parenting based on his behaviour. They think he's just a brat who needs a good smack. To those people I just say "fuck you"...live my life for 1 day.
But it's just physically and mentally exhausting dealing with him on these off days.

So I decided to come and post while I am heated.
A) I wanted to give myself a snapshot of my emotions during a high anxiety moment
and
B) I needed to give myself a time-out

Just give me the strength to make it til 5.

My guys! Cam's fairly computer literate for being just 4. Cuyler loves to watch him. And there is a plethora of safe, fun kid sites out there to occupy them for the time it takes to prep a meal.
I'm posting early today and it's weird. Usually the boys are in bed when I do this. However, the Emmy's are on and anyone who knows me well, knows I'm a tv whore and loves award night.
I hear Sean struggling to get dinner ready. Cuy just threw something and now he's screaming. For me.
I'll let Sean deal with it - I do it 5 nights a week.

We took the kids to the fall fair yesterday and had a great day! Sean returned to the beer tent last night and was feeling a bit delicate this morning.

I started reading the book "Unraveling the Mystery of Autism and Pervasive Developmental Disorder" by Karyn Seroussi. I can't put it down. She is the mother of a boy recovered (I HATE that word) from autism. She talks alot about the diet and the unconventional approach to autism. The approach your dr won't tell you about, but the one that seems to work.
It's like an underground society of families affected by autism who are using the biomed/diet treatments. We have all met with success on some level. Some have even recovered their children from the disorder...
I think it's alot easier in the States. They have the DAN! protocol (Defeat Autism Now!) and there are actual DAN! dr's who do this full time. But not here. Not yet.
And even still, in the States, it's pretty unconventional.

Most of the time, I just go about our life, his diet/supplements, his therapies and don't worry about anything else (like informing people). And other times, I'm simply infuriated that there are SOOOOOO many families finding success with this approach and still, we are told by the dr's "Don't bother" "Just reintroduce dairy and wheat"
And we are the ones who have to say "NO. This is working for us. We will continue with or without your support" We are the ones researching and networking and finding out the info that no one will give us, but rather we have to get. We are the data. Our children are the results. WHY WON'T ANYONE LOOK???
LISTEN TO US!!!!
Please.

And it's funny. There is a part in the book where she says she even wondered "Is he even really autistic?"
Sean and I do that alot. And - please - it's not denial. Hope perhaps...even confusion, maybe.
We are not denying anything about our situation with Cuy. But he has so many strong skills. And he is not the classic regressive autism. He did not develop normally, then start to regress and lose skills. He did not change after his vaccines. He was always a tad behind. His gap just kept increasing. Until it became significant.
And for Gods sakes!! I want somebody to delve a little deeper into his birth. Sean and I will never dismiss that as a potential reason for where we are. We just cannot.

It's like a conveyer belt when your dealing with the medical profession.
"Hi there...you've got autism, please turn to the left for ABA."
"Thank you for joining us, please stand over with the others for ABA."
"Autism? Right over there for ABA."

Yes, our children are all very alike. But they are all so VERY different from one another. Perhaps the unconventional will be the norm one day and parents won't have to sift and search for more info like we do. That everything that's out there will be an option.
I'm just grateful that we came across it when we did. Nice and early.

I just read and re-read this (as I hate spelling errors) and as I was reading it...it hit me. This is our life. I never EVER would have imagined my life like it is. I hate it and I love it all at the same time. I hate because everything we do is difficult and different from our friends and family. And they will never really "get it" or understand our life.
I love it because we see things that others don't. We see life through different eyes and with a different perspective. For that I am grateful.

Is it just me or does this little boy still have SO MUCH baby in him? I look at him all the time and think he's still has that babyness to him. It's the cheeks and the full lips, I think. I personally don't think he looks like he's about to turn 3 (gulp!) Maybe he'll be like his Mummy and always look younger than he really is. Aside from the fact that he's built like a brick shithouse (gets that from his daddy, Cam gets his littleness from me) he's still my baby boy. Always will be (although I refer to both of them as "baby boy")
The mohawk is gone, as the picture shows. And I know I'm biased, but is he just not the cutest thing EVER??? Cam was a pretty baby. A beautiful baby, with fine features and the gorgeous red hair. Cuy just so FREAKIN CUTE!! The big brown eyes, the cheeks, gorgeous lips and his buzz cut. Like I said - I'm biased. There is only 1 "cutest baby in the world" and every mother has it.

Well...I just packed Cams lunch for tomorrow. Big day. First full day of school. I can't believe he'll be gone from 9am til 3:40pm. That's a long day for a 4 yr old. I'm sure he'll be fine, I just hope he gets enough to eat. I find that all day long all I hear from him is "I'm still hungry" "I'm STILL hungry" "I'm STILL hungry". Hopefully he'll be occupied enough to not want to eat all day.

I am drawing a blank right now and have absolutely nothing to say. I will count that as a blessing. Meaning it was a good day.
Kids were happy + Daddy was happy = Mummy was happy
Can't ask for more.

The hawk is being removed tomorrow. It got mixed reviews. It looks really cute when it's all spikey and sticking up, but it doesn't stay that way and it just looks kinda silly to me. So Sean will buzz it away tomorrow - we wanted to give him 1 day in between without trauma. Which is all haircutting is to Cuyler - trauma.

We had Cuy's case conference this morning with all of his team members. I called it just for my own peace of mind and clarity. I needed to physically see who was with us and hear what they were doing. And I needed them to see each other and hear each other. And for all of them to hear Sean an I speak about our boy and our hopes and expectations for his future.
We had his occupational therapist, his developmental consultant, the supervisor for Community Living, the supervisor of the childcare centre, the resource consultant, the speech path and the community intervention worker.

I thought I could get thru it without crying. But I couldn't. Everybody introduced themselves and their role. Then we were asked to speak a little bit about Cuy and what he is all about. I had to get Sean to because I welled up and knew I couldn't without crying. I am just so passionate about my boys and get so emotional when I have to talk about Cuyler in particular. Sean did a great job of telling them what an amazing little boy he is and what we hope for him. I was able to interject here and there to re-iterate the points that we wanted to make ie: we will not allow his diagnosis to define him or put a ceiling on his abilities or our expectations. We expect him to be treated as any typical child - that's why he's integrated.

Then they went around and spoke of the goals we've worked on thus far and what will come in the future. We are transitioning from the Parent Infant Program to Intergration Services, so I wanted them to give and get feedback to make the transition as smooth as possible. I think it went well and I feel very positive about the whole thing. We got what I wanted to get accomplished.

Then I cried again when Debbie was leaving - she's our developmental consultant and has been with us since Cuy was a wee baby. She and the OT (who will stay on with us). Debbie is an extraordinary woman, who is smart and so supportive. I am so sad to have to leave her. We have bonded with her as a family and even Cam will miss her. She was so wonderful to all of us.

I wonder when I'll stop crying. I think I cry once a day. And it's not all sad crying. It's my way of getting all the toxic shit out of me. I often cry when I think of how great Cuy is doing - tears of relief. The release of tension and stress manifests itself in the form of tears and a good cry.
I think I am just so incredibly raw right now - emotionally stripped down to the bone as far as my emotions are concerned. And I am totally fine with that. I enjoy a good cry. And I find that on the days where I have the bad cries - the scared out of my wits, sobbing sad cries, those are the nights when I sleep the best. Like I've emptied all my energy reserves and my body totally shuts down. I love those sleeps. I guess a payoff for the hellish days I sometimes have. I imagine it's all part of my process. There is no set pattern or method to my process of grieving. I'm happy and blessed that I've got what I've got and then I'm resentful and pissed off and hate the world and my life. And there is no rhyme reason to it. Just any given day, one or the other hits. And I don't like to call it grieving. I'll call it coping from now on.

But today is all that matters and today was a good day. We are feeling pretty damn good about our future.

WOW! Last night my honey and I went to the U2 concert! We got home soo freakin late and my Mom didn't even get mad!
That's how I felt. Like we were 2 kids in love, having a night on the town.
No worries.
No kids.
No autism.
God it was fanastic! It really was.
And it's true - we got home at 1am and my Mum didn't seem to care...sweet!
It was such am amazing night. We had so much fun and I am way more in love with U2 (hmm...is that possible??) - they put on such a great show!!
We met up with Corrine and Mark at Big Daddys Crab Shack for some eats before the concert. The weather could NOT have been better and we had a nice dinner on the patio. As we were walking to the arena, we passed Roy Thompson Hall and saw Jann Carl from Entertainment Tonight there for the Toronto Film fest.


We had just missed Keanu Reeves. And we were going to miss Charlize Theron, Gwyneth Paltrow and Anthony Hopkins - they were coming later when we were to be at the concert.
Cuba Gooding Jr, Kate Hudson, Ray Liotta and Daniel Lanois were at the concert. I figured there were probably even more celebs there because of the Film Fest.
On our way out after the show, we saw Alan Cummings. And the judge from Canadian Idol - I don't know his name.

Hmmm...interesting...no mention of my kids yet...THAT'S why last night was so great. I wasn't a Mom last night - just a chic who loves U2 and was blessed to hear them live for 2.5 hours! And that's all I'm blogging today - just good, fun stuff. The good feeling is still there and I want it to stay for as long as it can.


Ohhhh, and one other thing. Cuyler got a haircut. Daddy gave it to him. Let's hope that he doesn't get confused for Maddox.

Happy Friday!
Well - great news all around today!
First off - drop off at preschool was a piece of cake. He walked away fom me and went to play. Not tears...nothing. He participates and uses his language. Still parallel playing beside the kids, as opposed to with them - but heck - it's only day 3!!!!!!!!

And Cuyler qualified for PAS - which stands for Preschool Autism Service. This service provides IBI - which stands for Intensive Behaviour Intervention. It is an amazing program, but only children who score moderate to severe on the spectrum qualify.
Funny enough - even though he qualified (which means he scored moderate to severe) - this was our most significant and best appointment yet. It was a follow up to the eval they did a few weeks ago. The woman we spoke to was like our autism angel. Her name is Aruna and she is a clinical psychologist/psychometrist. She was a beautiful East Indian woman with a beauiful voice. Everything that she said was like music to our ears. She said every single thing we needed to hear...that we've been longing for someone to tell us. And don't think the tears didn't flow - they did - again. It was such a relief and just the push we need to plug on. Today we were filled with a hope and optimism for Cuy that I don't think we had felt yet.


He will be a conversational speaker. He will learn and most likely be able to catch up to his peers. She believes that everything will be more difficult for him to acquire - but he is capable of learning. She said that he will most likely be indistinguishable from his peers, but will probably have difficulties socially.
She said that not many children come through this early and that if he was evaluated next year, he would not have qualified. She said that all the areas he scored low in (uhhh...ALL of them!) he will improve in over time.
Honestly - I cannot describe how Sean and I felt as we left. We just held each others hand and smiled at each other...we didn't need to say anything because we knew what the other was feeling and thinking. We have always been optimistic that Cuyler will do well. But for a professional to tell us what she did was just so refreshing and gave us a whole new drive to pull the best out of him. It will be alot of hard work on our part and those who work with him...but I'm confident that our team is dedicated to Cuylers success.

Life is good.

Today was a GREAT day!
It was raining when we got up and was bummed that I couldn't walk to school with Cam...we'd have to drive...ah well.
I dropped Cuyler off at school and he only cried a little bit. And it was not the "Don't leave me!!" cry that he gave on Tuesday. It was more like "...I guess your leaving now..." cry.
And I peeked into his classroom as I left and he was sitting on the floor playing. What a good boy!
He had a great morning too. He sat in circle for the entire time. He coloured. He sang songs...ate most of his lunch. I was so happy!
And he was just so pleasant all day. He did alot of singing. Just random songs...but he was singing. He's got such a sweet little songbird voice when he sings.
He seemed to be verbalizing again - which was a relief from his screaming of the past few days. It's just so nice he hears words.
And Cam. My big boy Cam going to kindergarten today. I am going to brag now - so be aware.
She asked us to wait in the hall and fill out a form while she stayed in the classroom with him to get to know him a bit. He was asked to print his name if he could (uhhh ya!! since like - last year!!). She asked him a bunch of questions and had activities set up to test his skills.
When she invited us back in - she was very impressed with him and said "He's more than ready! He is really ahead of the game." Which we knew. Why do I feel weird talking about how smart my kid is? He is sofa king smart!!!! Everything he does, he's good at - baseball, hockey, swimming, printing, he's even pre-reading! And he's clever and funny and witty and just an all around great kid.
See! Told you I'd be bragging!!

There's Cam fast asleep dreaming of his first day at kindergarten tomorrow. It's not really his first day...it's just a 20 minute meeting with his teacher. But enough for it to be a big deal for him. This was our last day of him being all mine. Now I have to share him and he's going to be a part of the public school system. I am so excited for him, yet sad that it has come upon us so quickly.
And Cuyler goes for him 2nd day of preschool tomorrow. His first day went great! He was off and on - but like I have said previously - I don't think he's 100%. See the pic? He crashed in my bed this aft...and woke up and proceeded to scream for an hour. Now it's just after 9pm and he's still awake.
His nose is kinda runny, but not...more like...boogery. And he feels warm, but has no temp. On my paranoid days I always freak privately that it's cancer or something. I think once your world has been shook to it's core with devastating news, you just don't ever feel safe from anything.
I will be the first to admit that our eating habits have been lax the past few days. We've had people coming and going and the boys have had more sugar than usual. So hopefully we'll get into a real good groove when they're both settled into school.

This Friday Sean and I go back to see the psychologist and get the results from his last evaluation and find out whether he qualifies for the ABA. If he does qualify, he'll remain on the list and hopefully get called within the next 18-24 months for the therapy.
If he doesn't qualify then he'll be removed from the list. I posted before about how I was neutral about the results and didn't care either way. I was wrong. I want him to qualify. Not that I want him to not be making progress - but I really want him to get the service. Especially lately. I just feel like we've hit a funk and the progress has slowed and the tantrums are edging their way back...I've just had a rough few days with him.

I keep reading this for encouragement:

A meeting was held quite far from earth,
"It's time again for another birth".
Said the angels to the Lord above,
"This special child will need much love".

His progress may seem very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away.
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent.
We want his life to be content.
Please Lord, find the parents who,
Will do this special job for you.

They will not realize right away,
The leading role their asked to play.
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given,
In caring for this gift from heaven.
Their precious charge, so meek and mild,
Is Heaven's very special child.


I sometimes think that these little ditty's romanticize having a special needs child and make the parents such very special people. But honestly...during his shit-fit this afternoon I thought, man...there must have been a mix up at the "special child distribution desk" up there. There was a point about 30 minutes into his screaming that I just didn't want him, or his autism or this life that I've got now. It just sucked!!! For a brief moment I thought "The only thing keeping me around is Cam." He sat on the porch and chatted with me as I put myself on a much needed, preventative time-out.
And I am constantly amazed at how my emotions can go from pure rage to pure joy. And all it takes is for one of my boys to smile at me and look into my eyes.
It's amazing the power your children have over you as an emotional being...buggers!

No photo's. I'm posting from the laptop. And I'm in a bad mood.
I'm sure I'm pms'ing and I sure it hope hurries up and f's off. I was so so so hating my life today. We don't think Cuy's been feeling 100% lately. He's been cranky and just looking so...autistic lately. He's still as cute as a button - but I haven't been feeling great about his progress for the past week.

Sean's not been himself either. Which, for me, is the worst thing that can happen. I can't even describe how he is when he's "off"...there is just something about him that's not...oh I don't know...he's just very somber and quiet.
And I mean "off" to the point where is friends are asking what's wrong with him. I feel alone in all the shit when he's like this. It happens VERY rarely. And I have to not think about how it affects me. I have to let him go through his emotions and understand that he's stressed too.
We have no money. We have a special needs child. Those 2 are huge stressors. Add to it the fact that I feel I have no goals in my life. No direction.
I have no problem putting my kids first. Especially when it comes to Cuy and his stuff. But there is the non-mom part of me (YES - we all have that part) who is pissed off that I can't get my hair cut, or can't go shopping on a Saturday afternoon. I want to get up in the morning, shower, dress nice and feel like someone needs me to be there as a productive member of a team...and pay me money. When I'm home with my kids - epecially Cuyler - I feel like I do nothing but talk to myself. Then there are the days where I don't do anything with him, because he'd sit and drive a car back and forth for 2 hours...and i don't feel like doing his therapy...then I think what a shitty mother I am for leaving him to do that.
But the thought of working outside the house and not being a stay-at-home-mom is so terrifying to me...not ready for that.

Why the fuck do we have an autistic kid????
We have friends who will never know the things we go through. They will never know.
I have MANY friends who have 2 healthy, happy NORMAL kids. I wonder alot what that must be like. It must be really nice. I bet it is.

***SIGH***
Luckily enough my bowels have kept themselves at bay with all of my stress. Those who know me, know they tend to go a bit awry when I'm stressed. And I've been stressed.
Cuyler goes to school tomorrow. I can't even type it without tears in my eyes. My baby boy being left there. I think "What are we doing to him?" Even though we've had him on the wait list since LAST January and prayed that a spot would open up for him. Now it's here...and I'm terrified...won't be able to sleep tonight (and I think I'm being a tad dramatic).
I made his lunch already...chicken nuggets. His Franklin lunch bag is packed. He's ready to go...but am I ready to send him? Sean will be with me to dry my tears as we walk out the door. Cam will be there too. He's excited to get some Mummy time tomorrow morning. I'm excited about that too.
Cam's such a good kid. A great kid. He was playing with a couple of kids (a boy and a girl) today who are about 9mos older than him. They were just mean most of the day (as usual)...little buggers...Cam has a heart of gold and he just doesn't get it when they're teasing and being mean. Cam would be the first one to invite anyone into his play. These kids were building forts for the purpose of excluding him "Let's build a fort and not let Cam in" and then Cam would offer to friggin help build it. Or they'd pretend to make signs that said "No Cam's allowed" They'd take up all the space in the fort and say there was no room for him (when there so clearly was). It broke my heart, but I just let him deal with it. Mommy can't fight his battles and I wanted to see how he would handle himself. He would get angry and cry and run home. Then run right back!!!!! I think he just thought they'd eventually be nice.
It just doesn't occur to him to be mean or exclude or tease...I never want him to lose that.

I will finish now...I could go on all night. If you read this - please think of Cuyler and send some

~*~*~*~*I love my new school!~*~*~*~* vibes to him.


These are for Josh:
~*~*~*I love my new school~*~*~*~*I love my new school~*~*~*~*I love my new school~*~*~*~*
Good luck Joshie! Good luck Corrine!

SIX MORE DAYS TIL U2!!!!!

The highlight of Cuy's day (I guess that's why the image posted twice??? damn thing) was when we went to the little toddler area of the zoo and he was able to run around. He had a blast boucning on the leap pads...or are they lilypads?
Anyways - he was so funny "Bow-see Bow-see! Umpeee umpeee"" Translation: bouncing bouncing! jumping jumping!

Aside from Cuylers limited enjoyment of the zoo (we'll go straight to the toddler zoo next year!), this was my ALL time favourite part of the day. These are just a few of the amazing pics I took of the polar bears. They seemed to be really crushing on Cam and I. They kept coming right up to the window and looking directly at us. I must admit - I was a little bit scared the first few times they came up to the window. Those guys are freakin HUGE.
(FYI - if you click on the pictures, they open up a bit bigger in their own window and I posted more pics prior to this post...scroll down)

Well...it wasn't an awful day. But it wasn't a great day either. Rather it was really stressful for Cuyler. He wasn't happy most of the time and I predicted him well. "Alldone!" "Bybye ahfant" Bybye hippo" "Bybye gi-ger" NO interest whatsoever in any of the animals. It was just such a huge new environment with tons of huge creatures to see. From his perspective, I wouldn't have wanted to be there either. We didn't get into any pavillions really - the noise and crowds did him in. So we walked and wandered. Had a nice lunch and played at the water park before coming home. He didn't mind the water park too much and did some running around.
The trip to the zoo started off pretty shitty for me. We came up to the gates and came upon a group of young adults who were mentally disabled. One was obviously autistic. I started to cry. Not sobbing or anything...just shed a few tears. I just do not want that. I don't want that life for my baby boy. People looking at him thinking "Thank God he's not mine" or the teenagers "What a bunch of retards!" I felt sick to my stomach.
I've been wondering lately how long I'll cry for what we didn't get. I don't do it all the time, but I do have my moments of sheer terror at what's ahead of us. Disappointment at what we're not doing. The older he gets the more fearful I become. I just wonder when our life will just "be". Where I won't think about autism for 1 day...or 1 hour for that matter. Where it won't be at the forefront of my day. Wondering what more we can do for him. Then I see people like the young adults today, who were born 20 years ago and whose parents were told to institutionalize them. Who had never heard of GFCF or biomed or ABA or FloorTime. I wonder how different those lives could have been. Because that WAS somebody's 2yr old baby boy. He is still somebody's boy.
We watched a show on autism yesterday (Jane Pauly - she's awful). There was a dr who mentioned that autistic people generally don't go on to live productive lives in society. Sean and I were like "Fuck that!" If that's how you feel, then thats what will happen. If anything, seeing those young men today and watching that stupid show yesterday gave me that much more resolve to plug on with our boy and bring out his very best.
I should say, in the shows defence, that it did reinforce over and over early intervention. And I got pissed off thinking about how I was bringing up autism when he was 10 months old and EVERYBODY said "Oh...he's fine...it's too young...blah blah blah" It was like they (everybody) decided to worry when THEY were concerned - not me. So people - pleeeeeease - listen to the mothers! They know! And even if you think they are being paranoid - let them be. Worst case scenario is they worried for nothing. On the other hand - if they are right with their instinct - they're that much further ahead by getting it early.

A bright light to end on: Cam and I went to look for shoes for school (found nada, zippo, zilch!) and I promised him an ice cream after. He decided we should go to McDonalds so he could play at the Playland after his cone. As we were sitting there at the table having an ice cream he says out of nowhere "This is great, huh Mommy!?"
"What is?" I asked
"This! Our special fun time!"

Where did this kid come from? He's is the sweetest soul I know and always says the perfect 4 yr old thing on the days I need it.
We really are blessed with the boys we've been given.

Today at the zoo. The pic of Sean and the boys has a zebra at the top. The little mountain sheep (aoudad) was also known as "Little Friend of Mine" - that's what Cam said he wanted to name that one, because it was friendly. The kangaroos were pretty neat except for the ginormous ballsack on the male. Luckily his leg was in the way and saved the picture from being obscene. The elephants were out and not as stinky as they usually are.