It's Official....

My kids are weird. Michael is actually HOPING to have bloodwork done tomorrow at his growth checkup. When I asked him WHY? he said he wanted to see what his hormone levels are right now. Ok, me thinks he has been privvy to too many medical discussions..LOL! He explains it quite matter of factly to any new person he meets. He has even gotten injections right in front of his friends like it is no big deal. To him, it really is not a big deal. It has just been a part of his life for the past four years now. I am amazed at how "routine" things in his life have become.

I am actually shocked that I got an appointment so soon. Normally when I call them, Dr. M is so booked up that it takes a month or more to get in. That is what I was expecting, but in my mind I was thinking how nice it would be if we got in tomorrow. A few seconds later, I was asked "Is tomorrow ok?". My jaw dropped! "YES! Tomorrow IS GREAT!" Not sure how long it will take. We might have to do another bone-age X-ray "I LOVE X-rays" Michael told me, and they might need to draw blood. I know for a fact that we will need to renew his meds-and that could take a while. Dr M is always happy to see Michael and see how well he is doing. He has been seeing him since he was 18mos old. I trust him more than any other Dr-and Michael has seen him more than his primary Dr(whom I can't even tell you the name of-cause we always see Dr M!)

Nick is also having a good day today with Stephanie. I hear lots of "YAYS" and "GOOD JOBS!" I also hear Nick laughing. He has gone quite a while without a break now-which is wonderful. We changed up his program yesterday to incorporate more items at a time so he won't get bored. It seems to be working! We have Stephanie until 3pm, an hour break in which he gets lunch, and then Tracy comes from 4pm-7pm. A packed day for Nick-but it is doing him a world of good. He stays connected with us for most of the day, and that is necessary. He is getting a tremendous amount of help and it is making a difference. Why is it that the kids who need help so much have a hard time getting it?? Why is there such a huge amount of "red tape" that has to be gone through before we can get ONE aide for him in class? Why is it such a fight?? It is not just us who have to fight. EVERY parent who has a child with autism must put up an enormous fight for services. What about when that autistic child becomes an Adult? Eventually, Nick will grow up. He will still most likely need help. We HOPE that he doesn't; but he likely will need some sort of help. I can only hope that the future brings more services for autistic adults-as they are the forgotten ones right now.

Before Kids...

It was much easier to keep track of things. Let me explain a little bit. We have a little monster who shall remain nameless; who likes to swipe items from all over the house in which to toss up to the ceiling fan. That usually throws the item behind the TV..which is sort of a "No Mans Land". No one goes behind there. You could go back there and discover items that you have not seen in months. For example, hubby was looking for his sandals a few minutes ago. Nick was in his chair eating yogurt and just laughing. He was not saying a word. Mike went all over the house looking for his shoes. One of my questions actually was "Did you check the toilet?" Yes, that happens when you have a child who likes to flush things. His answer was "He has not thrown anything in the toilet for a while now."

As the search continued, "After all, I JUST saw them earlier today! Where could they have gone...MISTER?!", Nick continued to laugh as he ate his yogurt. After checking the entire house, Mike moved the TV. There we found Michael's shirt, one of my CROCS, Mike's sandals, his hat, and a pillow. Today we also found one of Nick's pajama shirts in the trash. Sometimes when he cleans up, he really cleans up! We have found socks, dish towels, pants, and several pairs of shoes behind that TV. Little Mister is quick, and takes full advantage if you are busy and not watching him every second. Don't let his autism fool you. Somedays I am convinced it is just a farse and he has duped all of us!!

We Are Home

It is nice to go on vacation, but it is also nice to come back home. After the last week of being in the trailer, the boys were glad to have their space back! And I believe they were very happy to get out of the car. Brothers are not always nice, and these two sure had their share of smacking and annoying each other. To be fair they really do egg each other on. NO and STOP have become very clear words in Nick's vocabulary-and very loud ones.

What we learned is that if we are going to live in an RV and travel when I retire, then we are going to need a bigger RV. One where we can all have some space to ourselves. Someone was always underfoot in the trailer. Although I do love it as much as I complain about it. We had some very good days and nights in that little camper. But it was nice not to be woken up by a coke bottle being hurled in your direction this morning.

The first thing Nicholas did when he stepped in the door was go and get his favorite toys from his room. He drug out his keyboard and his little CD player. He also did a little hop/skipping dance as he had space to move and walk around. Today I have to do some laundry, and get some items from the grocery store. I also have to start thinking about school shopping for both boys. The summer is passing by quickly and these lazy days are about over. I love the extra time with Michael. Last night we were curled up on the bed watching TV after 10pm. Maybe today I will also go and get a little pool to play in since it is pretty warm out. Or, maybe we can schedule a trip to the movies or to the zoo this week. Those are always nice times. Anywho, I promise to load up some new pics once I get the new laptop all set up.

Better Days!!

Mommy got a NEW lap top for one!! YAY! It is a HP TouchSmart PC with a built in web cam. It has all the bells and whistles. Out with "Old Bessy", and in with new junior. It will be much easier to lug this one around the globe-and it has all of it's keys!! Another huge bonus. Some of you might remember THIS POST. In which case, no further words need to be spoken or written..LOL.
This week Nick got over his fear/anxiety over getting in the pool! He had a great time and for once he only had a tantrum when we had to LEAVE. We only recieved one ignorant comment. When one lady found out he was autistic, she commented that he looked like everyone else did. Not sure what she expected him to look like; but maybe we changed her views just slightly. Maybe she will now think twice about commenting to the parents whose child is having a meltdown in a store, or tends to just barge in after someone opens the door after we knock. Yes, he looks just like any other kid on the outside-that is why you can never judge based on appearence. Anyway, Michael made some friends here and so did I. We will be sad to leave them tomorrow, but it will be nice to get home again. I will upload some new pics when we get home and get settled in again. Lord knows that is going to be disrupting enough.

More Changes=More Meltdowns

These days the slightest change can send Nick into a full blown meltdown. If a toy is moved, if me or Mike step out of the room(I cannot even go to the bathroom), or even just out of the car-he completely loses it. We are talking total shutdown,screaming,screeching,clawing,drop to the floor, and our personal favorites;smacking and throwing. This also happens every time he gets a bath. He has become afraid of most things that deal with water. He also hates trucks, big RV's, and busses. Yesterday Mike was outside lowering our awning on the trailer and Nick was outside with him. I was in the trailer doing something and suddenly Mike comes in and shouts "You need to go get Nick right now." "Where is he?" I asked. "He took off that way when a big truck came by". Just then I heard Nick screaming at the top of his lungs about two camp sites over. I called after him, and he did respond by making his way back to the trailer. He slowly began to calm down as time went on and regained his composure further by a nice long sit around the campfire.

It just totally sucks. He has made so much progress, but no one sees that outside of the people that know him. Everyone else sees the kid who screams in the pool, screams in the bath tub, hits himself and shouts when upset, or worse; hits an unknowing passer by. He knows our "turf" at home and is familiar with all the places we go-so he rarely gets this bad. But in an unfamiliar store, he lets loose and looks like that "typical bratty child" that everyone says needs a good spanking. The heart break comes in waves. It is difficult to see kids his age and younger speaking circles around Nick, trying to engage him, or staring at him because he is acting strange. His actual diagnosis we can handle. Just the fall out from it really sucks. I don't know if it will be better a year or two from now, I certainly hope so. The vacation really has gone well considering all of this. It is just that it becomes so blatantly obvious that we still have so much work ahead of us, and that Nick is so far behind. Will he ever catch up? Or even go as far as to be able to work through his autism? There are just still too many questions concerning his overall development that we just don't know.

What We've Been up to.....

Relaxing

Swimming




Going Horseback Riding

Eating Ice Cream

Visiting a Petting Zoo

Only A Few Meltdowns...

We spent much of the day outside today. Going on nice long walks throughout the park trails and we even made it down to the river. Earlier this morning we went to the pool and that is where Nick had his first meltdown. He is wary of the water-so he screamed every time we got him in the pool. At one point he was actually doing pretty good holding on to daddy; then he got splashed on by another kid and that was the end of it. All other attempts to get him in the water were met with screaming. Nick did have a bit of fun just playing on the steps in the shallow end-so it was not a total wash out. Michael and I had fun playing games under water. We came back around noon and had lunch and a nap. Apparently Nick did not like mommy taking a nap and Mike said there were a few objects hurled in my direction. We got up and then went into Leavenworth to do some sightseeing. Since it was hot out, we splurged and had some ice cream. Mike had White Chocolate, Michael had Lemon, and I had Triple Chocolate Birthday Cake. All of them were oh so good. I might go for the White Chocolate if we go there again. Nick of course wanted none of it. Oh well-he was with us and that is all that matters. He had fun playing with the little colored ice cream spoons that they gave him. We walked around letting Nick decide which shops to go in. The only one that was picked out for him was the shop full of Christmas trees and decorations. The trees were all decorated and lit up-so he absolutely loved it. Lots of flapping in that store..LOL! I am hoping that Nick really likes these little trips. I know the changes are rough for him-which could be the reason for some of his meltdowns; but I hope that he has fun. It seems like he does. Just walking around with him doing his "silly talk" makes us smile because we KNOW then that he is having fun. I am just wondering what memories he will have from these experiences. And if he will ever be able to share them with us. I do think time to be just a kid is beneficial for him. Just as it is for Michael. We have no set schedules out here. No place we have to be. We have just done whatever came to mind. Come to think of it, Nick has coped wonderfully with all the changes. What we think of as relaxing with no schedule, Nick is anxious because he cannot predict what happens next. Even with all that, I am hoping that he is having a good time.

We went for a long walk tonight. It is peaceful. You can hear the river flowing below us, and the crackling of camp fires. I love the smell of the burning wood. Watching the embers float up in the sky as the fire crackles. Watching my boys get mesmerized by the flames. It is just so much darned fun! I just bathed Nick(he was dirty as anything with all the running around and climbing we did) and put him down in his bunk. He is once again PASSED OUT. I am enjoying these days-they won't last long at all!

VACATION!!!

We are enjoying a whole week with no appointments or therapies and getting some much needed relaxation!

The boys love the camper and for them this is the ultimate summer vacation. We are spending 5 days at a KOA campground and the boys have just loved it. Last night we made a fire in the fire pit and roasted marshmallows. We sat around the campfire and told some funny stories that we remembered, and just had a good time. Nick liked the fire and looked so cute sitting in his little lawn chair watching it. We took a nice long walk and listened to Nick jabbering and laughing the whole way. They both had fun on the nice big playground, and for once, Nick looked like any other kid out there. He did not perseverate on the spinny wheel like he used to. He slid down slides, and a major accomplishment was when he climbed up the rungs all by himself! Each time he ran by us he had a big ole grin on his face. He was having a ball. He had such a good time that when it was time for bed, he passed out in 5 minutes!! That has NEVER happened!! This morning we all spent some time in the pool and did a little basking in the sun. Will have some pictures up soon. Today we plan on getting in a little tourist action(Bavarian town we have never visited before), and maybe another campfire. They also have plenty of stuff to do here at the KOA for the kids-so we might check that out as well. Have a great day everyone!!

Loving Every Bit of This....

I am sitting here at the dinner table watching Mike chase Nick around the house. Nick is laughing and screeching with glee as daddy chases him, grabs him, and hugs him. Nick is blowing off some steam after 6 hours of ABA. He is making much faster progress with the increase in hours. He is also starting to pull a bit of mischief with his therapists. When Ana wanted him to draw on the paper, he took the crayon and slyly chucked it under the table-all the while looking at her and smiling. We have just enough time for dinner, bed, and we do it all over again tomorrow. It has taken a little time to get used to having a house full of people 5 days a week. At first I had no idea of what I was supposed to do while they worked with Nick. I have sat in a couple of times to help and to see how things were going, and talked with each of them when Nick had a "Break". Now I have gotten to like having them here. I talked with all of them yesterday (we had all 3 over at once for a sort of pow-wow) regarding potty training. We discussed adding some more things to work on since he was finishing his other programs pretty quickly now. Today he had a good day. He is working on letter sounds, basic writing skills, requesting what he wants, counting, and ABC's. We are going to add some self help skills such as dressing himself and brushing his teeth. Dinner time is now pretty much stim filled-as he is overloaded from 5-6 hours of working. It is sometimes difficult to hear him lash out while working-but I know it is going to be good for him, and he is only doing it because he is being kept from retreating into his world for the time being. It is so rewarding when I hear him count and speak up for something, or being able to follow directions and making more social eye contact. That is when I know it is working!

Today was also a milestone for Michael. I took him down to get his very own ID card. He also cashed his first check using his new ID card. I am loving every single day of being home with them. A few days ago Michael and I went to see the movie Ice Age 3-D. We also want to see the new Transformers movie. We are planning to go camping next week up near Leavenworth. Should be fun for the boys to get away for a little bit. I am looking forward to it as well.

Busy Saturday....

I heard through one of Nick's therapists on Friday that there was an autism walk yesterday. She said that they would have a booth there, jump castles, and some free small toys for the kids. Sounded like some fun could be had. I asked Michael if he wanted to go, and he said yes. I was looking forward to getting in some much needed bonding time with both of them.

Everything was going along great. We got up at 7:45 and both boys devoured two waffles each. We got dressed and did all the necessary primping. We were out the door and on our way to get some gas and some snacks/drinks during our walk. I should have known the following would happen. I stopped the car, turned it off, and got out of my seatbelt. Nick quickly did the same, and I had to tell him to stay in the car. This did not go over well. Then Michael told him NO for some reason, and screaming chaos ensued. I told Nick it was ok, and that he could get out when we went to the store. He seemed a bit happier in the store. Feeling good about myself for handling that, I was lulled into a false sense of greatness.

We found our way to the Walk and got everyone and everything out of the car. This was the first year I did not bring a stroller for Nick. I figured he is big enough to walk; and his feet drag on the ground in strollers anyway. Here is what absolutely DID NOT happen, as my *perfect* child is most certainly NOT capable of this.
Nick surely DID NOT have a meltdown of epic proportions upon trying to register. He most certainly DID NOT throw himself to the ground and scream bloody murder. And of course he DID NOT continue his meltdown all the way back to the car. Me being the *perfect* parent that I am, positively DID NOT take him to Fred Meyer in search of any stroller I could find. Upon our quest through the aisles, I DID NOT *bribe* him into calming down by handing him a stretchy,squishy toy for him to twirl. I also DID NOT happen to find the only store I have ever known that had NO strollers. We also DID NOT buy that over-priced emergency stimmy toy before we left. Of course not. After all, those parenting "experts" would agree that is not the thing to do.

By the time we got back to the Walk, people were already walking, so we just joined in at the back. It was a nice walk through all sorts of trails. Nick was having such a great time humming, running, stomping, and singing "Dewy,Dewy,Dock!" the whole way. He loved waving his hands through the bushes as we walked, and at one point nearly became part of the shrubbery as he stomped and pranced his way down the trails. He seems the happiest surrounded by nature.

Busy Schedule

Here is what Nick's therapy schedule looks like for this month:
Today: Ms Tracy 4pm-7pm
Fridays: Ms Tracy 12pm-2:30pm, Ms Diane 4pm-7pm
Mondays: Ms Stephanie 12pm-3pm, Ms Diane 4pm-7pm
Tuesdays: Ms Stephanie 12pm-3pm, Ms Tracy 4pm-7pm
Wednesdays: Ms Tracy 12pm-2:30pm, Ms Stephanie 3:30pm-6pm
Thursdays: Ms Stephanie 12pm-3pm, Ms Tracy 4pm-7pm

Give or take a few hours; that is around 30 hours per week! Since I have been home; I have been able to see how he has progressed. He is following directions!! His receptive language has skyrocketed. He responds to his name, imitates me, and actually smiled at me when I walked into his room this morning! He can do a lot for himself now-he gets in and out of the car by himself, goes to myself and daddy to say goodbye (before I left we had to physically walk with him to do this; not any more) He is just getting more functional every day. These are the moments that we have struggled to get. He is following directions so easily now, that you can almost forget that this was such a struggle. He may be a few years behind his peers, but hopefully we can narrow the gap as time goes on.

Home Sweet Home!

I am finally sending an update from HOME!! Gotta go now. Have lots to do today before Nick's therapist comes.

Jack Black scores BIG with me!!

Almost home....

The reason for such few updates my blogger friends; is that I have been deployed overseas for the last few months. I have been getting updates regarding Nick and Michael through telephone calls, and, while it is great to talk to them, it is not the same as being there. That being said, Nick and I did talk on the phone for about 20 minutes a few days ago! Most of it was in Nick's own language, but the boy had something to tell his mama! We also spent a long time copying each other's noises. Pure joy. I Love my little guys and cannot wait to get home to them again!! Soon. Very soon my loves.

Shop at Wal-Mart!

While outside with his therapist today, Nick exclaimed "Save money, life is easier, shop at Wal-mart!" He also sang a refrain from a song he heard on the radio, and he has also memorized songs from Guitar Hero. But, Shop at Wal-mart peeps! Nick says so.

Time For Change!

Thought the old blog could use a face lift!

Babysteps....

I called home a few days ago because I got an e-mail that said "Call me, before I forget what Nick did!" So I called home to find out what was going on. "Nick is going pee on the potty by himself during the day!" Mike said as he was rudely woken up by the phone. "He brought me a diaper and said 'diaper on'". We still have to teach him how to go poo on the potty, and eventually get him to wear underwear; but like everything else with Nick, it takes stages. I have happened on a neat site recently. You can click HERE to take a look at it. She is an autism mom who makes learning items for autistic kids and adults. Some of her stuff looks really neat!! Her button is on the side of my blog.

Score one for Daddy!!!

I talked with Mike yesterday after school and we were discussing the aide situation. Check out my awesome hubby: He went down to the school and put up a fight with the administration there. He took Nick's progress report; you know, the one that says he has made no progress? And went to battle to get Nick his aide! It worked! So, now they have to arrange another IEP meeting, and the aide has to come to that-then they will be able to have the aide come in the school with him!! YAY!! It is only for two days a week right now, but it is better than nothing. They are still thinking he will be back at his old school next year, as the class isn't for him. I mean, there are special needs children there, but they are all higher functioning than Nick. It just frustrates me that we were forced to move our kids from a good school to this one-only to have him move back next year.

Now, we also got on the subject of what his teachers say that he cannot do. They say he cannot identify his letters. This astounds us as he HAS identified them in the past in front of one of his teachers, and can identify any letter at home. He can also name colors, and shapes. Now, he has also been at school for three years. I wonder if they ever think that he is getting somewhat bored?? I mean, he was naming letters when he was four years old. He was also counting before three. I have seen him get bored with material before; he gets a look of "OMG REALLY??" and stares out the window. I remember that because I was reading to him a little kiddie book at the time. He just glazed over. I went and got one of Michael's big books of science facts and showed pictures of the solar system. You know that kid turned right around and became interested in all the new pictures and words. Hmmm, maybe Nick likes science...but they don't teach that in pre-school.

I always love to hear about what people don't think Nick knows. He shows us every day that he gets it. Why did Nick look right at me when one of his evaluators was commenting about Mental Retardation?? He honestly looked at me as if to say "I am not MR." Why does he remember tunes that he has not heard for months? How can he remember where exactly he put something earlier in the day, and go right to that spot hours later to retrieve it? Why does he look at me with a mischievious grin and twinkles in his eyes when he knows he is doing something naughty? What is it like for him to be thinking all these things and not able to get them out? How would people treat us when we don't talk for a while? Would they act as if we have no mind or that we are somehow less than human? Seems to me that is how people who cannot talk get treated. It is a huge mistake. One that, thanks to Nick and kids/adults like him, I know that I will not make again.

Stupid School System!!

So we have found home tutors for Nick that our insurance pays for. They were even willing to go to Nick's school to be an aide for him. Wonderful idea, right?? Yes, in a perfect world it would have been just that. We were so close. Nick's teachers were all on board with it, since they recognize that it would help him a great deal. Well, apparently the school board did not agree and has said NO to Nick having an aide. I am BEYOND frustrated right now. I went directly to PISSED OFF. Do not pass go, Do not collect $200. We got his progress report-and once again, no progress was made. According to the piece of paper, Nick can't even identify his letters. Which is BullCrap!! Needless to say, this might have been the last straw. We need to move. We are getting nowhere, and Nick is getting nowhere.

They were SOOOOO Little!!!

Hey...You back there?!
Michael around 18 mos old

Big Brother

Just wanted to give a HUGE Shout out to my oldest son Michael. It was his TENTH birthday yesterday!! I can't believe my oldest 'baby' is TEN already!! He is not looking like a little 'kid' anymore; he is growing tall and filling out. Where did the time go?? It was also his best friends birthday yesterday!! HAPPY TENTH BIRTHDAY GUYS!!!

I also want to say that Michael is a wonderful big brother to Nick. It's not easy having a special needs brother, but Michael is a champ. He has reminded me many times to tell Nick's teachers that he is just across the hall, and they can come get him if Nick needs him. Of course, I have yet to really do this as I want Michael to have his own life outside of his brother, but he has always put the offer out. It has been that way since the start. I remember Nick was just a day or two old and the nurse came by our hospital room to do a heel prick on him. Of course little man screamed at the stick, Michael turned around and shot the poor nurse a look of death. He was always trying to make Nick comfortable--we have a picture of Nick sleeping in his carseat surrounded by stuffed animals. 5yr old Michael thought he would be more content with lots of soft things. We still have an outfit that Michael picked out for him when he was newborn. It is a lovely white little jumper with a Peter Rabbit design on it. Peter Rabbit was Michael's fave story book character at the time. Nick has stood at the door waiting for Michael to come home from school saying "Michael come here!" When Michael and his friends are playing Guitar Hero, Nick gets out his little guitar and plays in his own way with them. They have shared a room for 5years. No matter how much Michael wanted his own room, two days later we would find them sharing a room again. To see the both of them so attached warms my heart and my spirit. HAPPY BIRTHDAY to a wonderful boy, who I am sure will become a great MAN someday!

Yoko????

Yes, apparently now Yoko Ono has jumped on the autism bandwagon. Go HERE to read the article published by the BBC. Not sure how I totally feel about this. I mean on one hand it is great that she is supporting the cause, but, Yoko Ono?? Why not someone who is more affiliated with autism?? How about someone who has first hand knowledge?? There was one quote in the article that bugged me.

Once the solution for autism is discovered, we will see the sky shimmering in its original beauty, with no holes.

Well, I see my son in his original beauty WITH autism. He has no "holes". And no, to this date, Nick is not what people call "high functioning", and I still believe he is wonderful.

I know I am not the only person who thinks that once the solution for autism is found, the world will be at an injustice. Kids like Nick are not wanted by the general public. They are not part of that "Perfect family vision". Imagine how many fetuses will be aborted when the parents hear the words "Your baby will be autistic". I admit, autism is no easy thing to deal with sometimes. But what I have found is that a little humor can go a long way. In a way, autism is freeing. I mean, who has not wondered how far an object will fly if it gets hit with the ceiling fan? We know. Socks can fly across the room, so can hats. Shoes, on the other hand, tend to just hit with a "THWACK" and then land about two feet further. I mean really. Us "social people" have not given the world much when you think about it. Possibly because we are too busy yapping our mouths rather than trying to create things. We worry too much what people will think of us if we don't. I dare everyone to, just for one day, do whatever pops into your heads at the moment. Whether it be dancing on your tip toes, jumping up and down in the store, running just to feel the breeze on your face, or gazing at a ceiling fan(and just for some real fun, throw a sock at the ceiling fan!). Get in touch with your inner autistic, and tell me if it's a bad thing.

How do You Handle that Awkward Silence....

of when you first tell people you have an autistic child?? You know, you are talking to either a friend or a co worker and it comes up. Or, when talking casually to a first time mom about things like vaccines. There is an awkward silence between conversation when I tell them "My son is autistic". It is the same pause when you tell people someone in your family has died. They don't know how to react. Well, let me tell you. All you have to do is ask the normal questions. You know, all the ones you stop asking when I bring up the "autism" word. He really is wonderful, and I will be the first to tell you so. You don't have to pity us as his parents, or him as the child. Understanding that he is first a 5yr old little boy is paramount. I like to fill that awkward silence with pointing out that he is just a wonderfully, unique little man. I will shout it out to the world if you let me. I will also shout out how wonderful my oldest son is....you know, the one who has to take shots everynight to grow. Don't feel sorry for him either. He does not feel sorry for himself. If anything, he has learned a most valuable lesson very early in life. "We are all the same, even though we are different". Sure, there are days when he does not feel like getting a shot; pleading "can we please skip tonight?? I am tired!" But, more often than not, he is ready when you say so.

So, don't go silent on me when I bring up my kids' diagnosis. To me, that is part of what makes them the unique and wonderful little people they are. They are not defined by it. And you know what? That awkward silence is not going to prevent me from talking about my kids. I am not going to hide them from anyone or the fact that they have some differences. No, life has not gone as I had planned, but I was never really the one in charge of that anyway. If anything, I will shout louder because of the negative thoughts associated with autism. Kind of like saying "Look at this kid. He smiles, he cries, he likes to go places, he likes toys, he likes music and bright colors, just like any other 5yr old! And he has autism." Yeah our days are filled with therapists and evaluations, and other things that most parents don't have to do. But, I would rather be doing this stuff than not have him at all. So, no, I would not trade my life as it is, because that would be saying there is something wrong with my life now.

So, how do YOU handle that awkward silence?? I really want to know.

Happy Easter!

Hope everyone had a nice holiday. For me however, it was just another day. I completed my first writing assignment in my psych. class. A fitting article about Savantism. I was happy to get an A on it! I find out tomorrow what I scored on our first test. I think I did pretty well, but we will see.

The boys seem to be doing well. I talked to them a couple nights ago. The evaluation team came to our house last week and met our sweet Nicholas. They are now trying to match him up with a therapist. Mike and I both said the same qualities: Young, a bubbly personality, and someone who gets in his face. He seems to respond very well to those types of people. The more expressive the person, the more he is apt to pay attention.

He is speaking his mind more and more, which we are absolutely thrilled about. Mike told me they were parking the car in the driveway and Mike said "Seatbelt off" as he turned the car off. Nick responded back with a "shut up". Of course, Michael immediately burst out laughing at the fact that his 5yr old brother had just told off his daddy. He is doing better in school as well. The new program he is in has said that they will send his therapist to school with him twice a week for more one-on-one time. He will also probably be transferred back to Evergreen next year. The school is getting better, but they still are not equipped to handle him full time. He is going to need an aide for kindergarten. No question about it. We are excited though about the progress he has made, and the new services he will now be getting. Other than that, not much else to report.

Have a great day everyone! Thanks for thinking of us!

The Lord knew what I needed today; he must have. See, right now, I am away from my little guys on a long work related trip, so I cannot see them everyday. I went to work this morning and I happen to have a TV in my office. I turned it on, and went about my daily business. A few minutes later, I hear a very familiar song coming from the TV. The song "Iko Iko". 'It couldn't be' I thought. I turned around in time to see the title "RAINMAN" come on the screen. I nearly jumped for joy, and I also gave an appreciative glance upward towards the sky. Someone knew I needed this. I needed to see a piece of my 'bubby' on TV. I watched the movie through laughter and tears. A few things stood out that I had forgotten about. Like near the end when Tom Cruise is in the room with the lawyer and Dr. trying to get custody of Raymond. The Dr. goes on to describe Raymond in the familiar clinical language that I have come to despise. I cheered when Tom Cruise was yelling "He's so much more than that". My thoughts exactly. I find it very hard to tolerate when Dr's describe Nick as just a bunch of "symptoms" and put all their efforts in reporting the things he CAN'T do, or see everything he does as just a bunch of "Self Stimulatory Behavior" Grrr! Hey, don't NORMAL kids jump on couches too??! Nick is a PERSON. So are all the other Autistics, Little People, Paraplegics, people with Cerebral Palsy, and other differently abled people. Treat them like the human beings they are. Don't treat them as a bunch of "symptoms". Ok, I am getting off the soapbox now.

Anyway, my fave part of the movie came at the end of the custody hearing. When Charlie and Raymond put their forheads together and connect as brothers. I got a little misty eyed thinking about my two boys. No matter what, they are brothers. And a big "HA" to all the doctors who say that autistics are not capable of developing relationships. That is a big misconception. I know it. For a fact. I live it. Nick knows love. He knows he likes to feel loved. When I come home from work, he follows me around. He may not run up and give me a big hug and kiss-that's not his style exactly. But he will follow me into every room and is quite happy enough to be in the same room as I am. I notice him playing in the corners, and do my best to acknowledge him with either a HI Nicholas, a tickle, or rubbing his hair as he stands next to me. That's his way. And it is perfectly fine. He loves his older brother too. He does not like to see Michael upset-and has a unmistakeable look of concern on his face. Don't tell me he is not capable of these things. Everyone wants to be loved and accepted. People just have to pay attention to the subtle cues. If you look, they are there. I promise you.

I got a wonderful e-mail from Nick's teacher today as well! Apparently he is doing excellent in class! She was saying that he is now the 'Calendar helper' and is saying everything she asks him to. She told me that he was eating his applesauce with a spoon with no help!! This is a kid who would not even eat at school in Sept. Much less, sitting with other kids while doing it! Mike has taken him off all of his supplements and even the Rice Milk. So far, he said he has had nothing bad to report. He has told me that he does not want to do the supplements anymore, because he "Likes Nick the way he is right now". Which, is still very much autistic but doing wonderfully. I don't feel like I wasted anything...we had to at least try some stuff, and he did have some real issues. He may well have them again in the future, and we will work with them. But, for right now, he is doing great! I will have great happiness in knowing that.

He's IN!!

Got some wonderful news yesterday!! Nicholas got into the Autism Demonstration Project! He is officially "Done" with the University of Washington as of the 31st of March, and we will now be able to begin therapy at home with him. The autism demo. project is going to evaluate him of course, in April, and they will see how much he will qualify for. But, this now gives us the leeway to hire people to come into our house and do things with him. Plus, it is going to up his hours every month. We also got him enrolled for respite care. Basically, it will be there to give us a break, and we now have someone qualified to watch him if we need it. That way, Mike can go to appointments without having to drag Nick around(i.e. the dentist and other not so friendly places) or he can take Michael to a movie or something. It gives him a little more freedom.

As for me, I have finally gotten off my butt again and registered for school. I am taking a psychology class, and a german class. Slowly inching my way towards my degree.

Rainman....

That was the movie the guys at work put in this morning. For them, it is simply a movie to watch. They don't give much thought to Dustin Hoffman's character, other than to wonder how can "Rainman" do the complex calculations in seconds. This is the movie character that comes to everyone's mind when you say "Autism". The comparison offends some people in the autism world, because, you see, the Real Rainman; Kim Peek, does not actually have autism. He has what is called Agenesis of the Corpus Collosum Also, very few autistics actually possess the savant skills that are depicted in the movie. I however, do not mind Nick being compared to "Rainman". Why? Honestly, the way that "Rainman" carries himself-with his hands close to his body, head tilted slightly and looking at the sky, his gentle and innocent nature, remind me of Nick. It is exactly the same body posture. I found myself wanting to watch it so that I could soak up a part of Nick. My Nick. My little boy who stood in the middle of a soccer field, looking up to the heavens in smiling glee, completely oblivious to the swarm of a team of 7 yr olds headed right for him. The whole team parted and went on each side of Nick as he just stood there, laughing at the sky. I laugh at Rainman's little oddities, and find myself getting very upset at Cruise's character for being so impatient and harsh with Raymond. Others watch the movie and simply turn it off when it is over. It is finished for them as soon as the closing credits roll. The movie is not finished for us. The credits are not going to roll and then it will all be over. Most people only have an hour and a half watching someone they presume to be autistic. We have a lifetime. The general public does not see what all goes into living with this 24/7. If you'd like to see another autistic character that is more true to life, try watching the movie "What's Eating Gilbert Grape". Gilbert's brother, Arnie; was autistic. Arnie also reminded me of Nick. The echoing language that Arnie does, and some of his mannerisms are like Nick's. I also find myself loving Arnie. The movie "Mozart and the Whale" is another good one. Josh Hartnett's character is obsessed with numbers. Like Nick, he also plants himself in front of the microwave to watch the numbers. But, the general public will associate Nick with the movie "Rainman". They will ask me what his special talent is; and I will say "He can make my heart smile". That's not such a bad thing.

My Amazing Nick!

Nick WANTS to talk. How do I know? Because he TOLD daddy...that's how. Nick came up to Mike the other day and said straight out:

"Daddy; Nicholas(he was saying Mike's response), I WANNA TALK!" My little man. Proving to the rest of the world, that he IS aware of things and he does have thoughts about them. Not surprising to us as we have known this for quite some time. But to the rest of the world, just one thing to say. Just because someone cannot talk, it does not mean that they are not intelligent! To quote William Stillman: ALWAYS ASSUME INTELLECT.

Busy Days....

We have had some busy days here at our house. Last week was mostly a blur. Nick had his usual ABA therapy on Tuesday afternoon, and then that evening we were meeting with a potential home therapist. Nick seemed to like her. He was playing his usual game of chase and being a little bugger. He managed to throw one of our phones in the toilet as well. Still not quite sure if it works or not. Don't fear, we still have another phone. He also managed to pull off one of those decorative type kitchen drawers. You know, the ones that look like drawers, but don't move. Yeah, he pulled it off. Not sure how the heck he did it as it was fairly tough to put back on. One of those things where he does not know his own strength. Anyway, the home therapist will start on Tuesday barring any complications. We also had Nick's IEP meeting on Wednesday. I went in and observed him in his classroom on Tuesday afternoon before we went to ABA. I really got to talk with his teachers and was able to find out how he is doing. The main area of concern was his increase in meltdowns. I suggested that they try and give him stickers or some tape for him to feel with his fingers. He likes the sticky feel to it, and that calms him down a lot at home too-although we rarely have to resort to that because he will go to his room and escape the chaos. But in school, he can't do that-so it led to some pretty decent meltdowns. Just as we were talking about stickers, Nick was starting to get revved up at the door. One of his teachers asked "Nick, do you want a sticker?" He turned right around, regained some composure on his way to the teacher, and said quietly "I want sticker". They were completely shocked! It worked like a charm. I was able to walk him away from the door, and get him to sit at the table with the other kids-with no meltdown. After that, they were completely on board with the sticker thing. His IEP meeting was the next day, and it went fairly well. The school is really trying to suit him and his needs. I asked if he would have an aide for kindergarten next year and they said that would be determined at a later date. We should also find out if he can qualify for year-round school at the end of the school year. That would be wonderful if he does. Other than that, things have calmed down a little this weekend. So far. That could change though!

My Little Man is Growing Up......

Yes, I know it is inevitable and that these things happen; but with Nick every milestone is cause for celebration. This morning, he got on the bus by himself. I walked him as far as the edge of the carport-he did the rest by himself. Last year he was still having trouble going up those big steps; not now. He held onto the rail, and put one foot in front of the other, it took him only seconds to climb all the way up. He glanced back to me only as he was at the top and being escorted to his seat. He gets such a thrill when he does something himself. He gets so proud of himself. The other day he took his own shirt off and both of us were just beaming with pride. In his own time. I just have to remember that. He is making progress. Such good progress that even Mike said that he has so much hope for Nick. Much more than he did before. Of course we always had hope for him; but it was hard to keep that hope when Nick just seemed so disconnected. It was hard when he could not understand simple direction; to know just how much was able to get in. Now we know that everything is getting in. He may not be able to tell us with speaking so much, but his eyes say it all. When he looks at us with that big ole smile, he is saying more than words could describe. It's amazing really. For someone that does not talk can say so much with a simple look. He spent the whole morning drawing on his aquadoodle today. Not just lines, but patterns. He drew big circles, small circles, squiggly lines, and straight lines. We have not erased his latest wall art, because he likes to go around and trace them with his finger. It seems to be soothing to him. Yes, at first I was rather dismayed by his latest doodling. In a funny way it kind of grew on me the longer we left it up. I looked around our bedroom the other night and noticed his art had progressed from just lines, to letters. We have a big fancy "D" on the wall between the closets. Other places we can see M's, I's, and C's. What was even better was that nothing was left un-touched. Nick had colored a line or two on every piece of furniture that was there. He likes to view what he has created. He is actually the only one of my kids who has liked to color with such a vengeance. Mere coloring on paper does not satisfy this need that he has. Wonder if Michaelangelo's mom ever experienced this?!

Being "Nooooonie"

That was Nick's choice of word to shout out at the soccer field today. We asked each other "What does 'Noonie' mean?" We were perplexed. He would do his happy dance and shout "Noooonie! Nooonie!" We want to understand our little man, and sometimes that means getting down and 'stimmy' with him. Last night before bed we spent about an hour mimicking Nick. I don't know who had more fun....us, or him. Nick laughed hysterically when I would jump and flap and say what he had said. He would then spurt out another 'word' and jump-then I would follow suit. I can imagine how silly we all looked; but we had a great time. Daddy got in on it too, and then the fun really started. Nick and Mike ran around the living room slapping different objects. Each time Mike would say the name of it loud and clear like "TABLE!" and Nick would jump up and down, then run to something else. We have found that Nick DOES like to be social-just that his way is different. When Michael has a friend over, Nick is usually hanging around them in some fashion. He will play in the bedroom beside them-doing his own thing, but still being 'with' them. Today at the end of the soccer game, he was part of the "bridge" that all the parents do. He ran under them (although he stopped midway to just savor the moment with a boisterous belly laugh-and held up the line of kids running through) and enjoyed every bit of it. He does watch what they do, and in his own time, even imitates them. You just have to understand that his ways are just different. He enjoys the same things that most kids do. All he just wants is to be accepted for who and what he is.

Birthday Pics....

Cake #2. The cake that I spent the wee hours decorating!

Behold The Power of the Wand!


Singing Happy Birthday! Nevermind the "stoned" look on his face..LOL.

WooHoo!!!

Only four words in this post need to be said: Nick is feeding himself!

Birthday Party Re-cap

Yesterday was Nick's 5th birthday party and I think it was the best yet. He did not eat cake, but that is no big deal. Heck, Michael does not even eat a whole piece of cake that much.

Of course I was running around like a mad person the whole day prior to the party. Could someone please tell me WHY the toilet has to break 10 minutes before our guests arrive?? It all started when I went in the boys' bathroom to clean it, since our guests would be using it. I looked on the counter and noticed a toothbrush was missing. Oh no. I then looked back in the toilet and noticed that someone had left a little "floatie" in there. I yell at Michael "Why can't you remember to flush the toilet?" Michael then replies "I DID! The toilet won't flush!" What do I do? Why I try to flush the toilet. He's right, it won't flush. I spend a few minutes trying to plunge the toilet-for what I don't know. No one can say the last whereabouts of the missing toothbrush, and Nick is laughing like a maniac. I can only assume that the missing toothbrush and the clogged toilet are no coincidence. A few deleted words later, we shut the water off to the boys' toilet, and scramble to clean our toilet in the bedroom. It gets cleaned and Michael and I are off to pick up our guests at the front gate.

Our friend Susan arrives with her two boys. Michael and her oldest son take off playing Guitar Hero in the living room. For a while, all four boys are in the living room. Nick and her youngest son are watching the older two. That leaves Susan and I with time to catch up on life. We talked for a little while and let the kids run around doing whatever,and then it was time for presents. I got Nick to sit on the couch. He was excited at the mere mention of "toys" and followed me around to wherever they might be. Plopped him down on the couch and plopped a present in his lap. I showed him how to do this thing we call "unwrapping" and he caught on in no time. This year he realized that there were colorful and interesting items hidden in boxes covered by the paper-so he was tearing all the paper off. And if you know Nick-he tore every. piece. of. paper off. Every single toy was a smash hit. After getting overstimulated with toys, the sugar high was next. All the kiddos were ushered into our very small dining room and treated to Cake #2(which turned out great. I will post a pic later). Nick even liked the singing part. He seemed to realize that this was all for him. And he liked it! He immediately made a go for the cake. Fingers were digging into frosting, and whole hands were smearing. I tried to get him to taste it, but he did not want to. After three hours it was all over, and we all just lounged around the rest of the evening. It was a wonderful afternoon and Nick LOVES all his toys. Especially his Little Einstein Conductor Wand. He has carried that around all day.

And the toilet still won't flush. But who cares? We will just call to have it fixed this week.

Busy Day!!

We have had a busy day today. The boys woke up around 7am, and between 7-8:30 or so we had numerous visits to our bedroom. Nick flashed lights off and on, climbed on our bed, and visited our bathroom. After realizing that sleeping in would be pointless; I got out of bed and started getting on with the day. It was going to be a busy one after all. First on the list was breakfast. Both of them had two waffles and I grabbed a bowl of goldfish crackers. After that, it was time to get everyone dressed to go to Michael's soccer game. It seems to be the one thing that is going right with Michael, so we let him play. This year, Nick is old enough to play on the little teams, but, he isn't. I see all the little boys who are about his age playing now and I find myself getting sad all over again. It comes in waves, and makes itself known at every major milestone that other kids his age are hitting, but we are still stuck in this autism place. As I watched the other little kids play my mind drifted to those "What if?" thoughts. I saw one little boy on the sidelines trailing Mike, and for a moment I wished that was Nick. Life would be so much easier for him, and for us. I am brought back to reality when Mike sits in the passenger seat and says "Seatbelt Off!" to Nick; who promptly unbuckles himself from his carseat. Now, he only unbuckles when told. Last year he had a habit of unbuckling when we were on the highway. Minutes later he has climbed into the passenger seat and has begun playing with all the buttons in the car. He sits back down in the seat and I catch a glimpse of him. Hands are flailing, fingers are flipping, and he is blissfully happy. This is our normal.

After the game, I drop Nick and Mike off at the house. I am taking Michael with me to help pick out all the birthday presents and decorations. This is fun; and this year I could care less what I have to buy for Nick. I found items that would be fun for him and they were even age appropriate! A first! We got him an Aguadoodle Mat-which he absolutely LOVES. Nick has a love of drawing now-so we want to indulge him in it. It makes him giddy with excitement, and so far it is saving our walls. The pen will only mark on the mat. We also bought a Little Einsteins piano, and a conductor wand that lights up and does stuff when he waves it. He also got a pair of toy binoculars, some color wonder finger paints, and a Leap Frog Learn to read thing that hooks up to the TV. (That might help him to learn more words, and it has pictures of the words on the TV...like KITE would show a kite on the TV).

And do you all know that I started this post around 6pm and it is now 10:38pm??!! Why? You might ask? Well, let me tell you what happened. I was baking Nick's cake and all was well until I realized it was too big for my cookie sheet. I then cut it to fit and started to make the icing. The icing came out too sweet, so I started using the store bought stuff. Only to realize that I did not have enough to cover the cake I made, and it was tearing the cake up. Unhappy with the way things were turning out (I can be a bit of a perfectionist) I had to run to the store and buy new cake mix and icing. Came home. Cleared out the old cake and cleaned the dishes so I could start the new cake. New cake is now in the oven. I still have to decorate it and wrap presents. Maybe I will get to sleep in tomorrow?? One can only wish right?

The Results are in.....

And they are just as we expected. Overall Nick scored in the toddler range and is significantly delayed in all areas. If he stays significantly delayed for the next year or two, they will need to rule out mental retardation. Mike and I both feel that Nick is not retarded. But, since he is nonverbal for the most part, they cannot accurately test his IQ. We discussed a lot of topics, but the main one was his school. Now, suddenly Nick is becoming volatile and having tantrums. He is having problems with transitions at school-something he very rarely has issues with at home. Mike was called the other day in fact. Nick was screaming and crying in the background, and his teacher was saying she did not think the bus driver would take him home. Nick LOVES to ride the bus. It is the best part of his day, and to take that away from him just broke our heart. One now has to wonder WHY is he throwing all these tantrums suddenly? And why the hell do they not write this stuff down in his notebook??!! We have received NO communication from this school other than these two times. No thoughts as to what has possibly brought on all these tantrums! All I can say is that since starting at this school; both kids have gone downhill fast. Is it just a coincidence? The Dr has readily agreed to provide Nicks' teachers with info on autism, and will offer them the chance to come to the University and learn from the therapists there. Mike took like 10 business cards to hand out to the teachers and principle of the school. Will they take up the offer? Time will only tell. The school is just not ready for kids like Nick and it is heartbreaking to see him come off the bus with a face red and teary from crying at school. Something is going very wrong; and we will find out next Wed. His future at this school may be short.

Evaluation Day.....

Ok, as I said in the previous post, Nick has been undergoing some evaluations last week and today was the last eval. before the parent conference. They are evaluating him to see where his functioning is and that will determine if he can continue to get services at UW. After seeing so much progress in him this year, I was crushed when he did not "perform" at his best. Simple tasks like matching spoons, identifying car, and imitating just did not happen without my intervention. Nick was bouncing all over the place and could not focus on anything for more than 5 seconds. He does so much better at home, which kind of gives a false sense of progress. It may as well have been his very first evaluation-if you grade it by that then he has not made any significant progress in nearly 3 years. But, I KNOW he has...it is all so frustrating! After an hour of watching him throw blocks, repeat non-sense words, and play with his hands, it was all over and I was heartbroken. We will see what the report says, but I suspect his functioning is still around the toddler level. Days like this are very hard.

Once Bitten......

Ok, I have been really trying to get a "warm fuzzy" about Nick's new school placement since it happened in November. I was thisclose to being there, and then I briefly chatted with one of his teachers today when I picked him up for his eval. at UW.
"Nick has not had a good couple of days" she informed me.
"Oh?" This was news to me; since we bought a small notebook for the teachers to write in everyday(at their request actually) and it has not been seen for weeks.
"He bit the other teacher, and head butted her the other day."
"He BIT her??!!" "What happened??!"
She then proceeded to tell me that each day they require all the kids to sit in a circle on the floor and do "calendar time". I have no idea of what "calendar time" consists of, but apparently Nick was wanting to play with a toy rather than do this. So, his teacher goes and takes the toy from him. Now, in November when he started here, we showed his teacher how to speak to Nick and he will reluctantly hand over what it is you are asking for-minimal protest, and a very controlled Nick. He gets rightfully upset when you just yank it from him. Nick likes order; he likes to feel like everything is under control. Don't we all? Anyway, Nick bit her and headbutted her, and he has been throwing tantrums when transitioning from one thing to the next. He does not do this at home. In fact, he barely does this when out in public. Nick is not a biter. He has never bitten anything other than his own lip before. He must have lost all control of himself in order to do this-which is not a normal thing for him. Now, I am afraid that the teachers will see him differently and act somewhat cold against him. This is not normal for him. He went to Evergreen for two years and he never bit anyone. His teachers all loved him and he thrived. Also, the number of kids in his class has grown from 5 to 9 since November. That is 9 kids-and today there was 4 adults who were also in the class. That is 13 people in a room-all afternoon. It could very well be too much for him. It just seems like they really don't know how to handle him. He is in a room with 12 other people bustling about,expecting things from him, and he goes in to overload. He has no escape. No quiet room he can go to for a few minutes of reprieve. We have an IEP meeting next week and I plan on discussing some of these things. Nick just needs an understanding teacher and he will be ok-I just feel like he will sink at this rate.

On the verge of a breakthrough?

Could it be?? Could it be that Nick is starting to make some real progress in the area of cognitive development? What he did today was a huge leap...no wait....it was a slam dunk!

I came home today and Nick was playing in the front closet with the light on. When he heard me he came out. He was not saying anything, but he was hitting his head with his hand. I thought at first he was frustrated with something, because that is when he usually does this. But, instead of being mad at something, he grabbed my hand and made me hit his head. I can't say HOW, but for some reason I immediately thought of a headache.

I kneeled down to his level and asked "Nick, do you have a headache?" He said nothing, instead he began looking for a place to bang his head. I instantly distracted him by taking his hand and saying, "Ok, let's go get something to fix it."
"Fix it" he understands, and begins to follow me. I find some Children's Motrin and gave him the recommended doseage.

He is still quiet for the next few minutes. Ten minutes or so pass, and Nick is not so quiet anymore. He is screeching with happiness and playing beside me while I clean up the kitchen. Mike notices the drastic change and says "Wow, he must be feeling much better now!" Mike then proceeds to tell me another amazing event that happened today.

He told Nick to pick up all the pillows and put them on the couch. Which, he has normally needed a little help with staying on task and maybe some guidance. Not this day. Nick did it. With no prompts. Words cannot describe how proud I am of my baby boy! My Little Man...Doing the best he can! Today was a good day.

I count this as Imitation....what about you?

This is what transpired as I saw Nick run past me in the kitchen with the dish sponge in hand. Well, he did see me do this ALL DAY with his crayon capers.

Mischievous Nicholas

Oh yes ladies and gents; Nicholas has been very full of himself lately. I have been on crayon patrol most of the day. We keep his crayons very high on the top shelf in the playroom; but that does not deter our little mister. What does he do? Why he pulls up a chair of course and stands on it. His grubby little hands latch on to the oversize crayons, and Nick marks his way down the hallway. Yesterday he managed to open the window in the livingroom and peek his head out. Today he managed to hang one of his bed sheets out the window; last week he had thrown a bucket full of toys into the bush below his bedroom window. Can't say I was all that surprised, given his love of watching things drop. I actually chuckled quite a bit at the image of a blonde haired little boy throwing toys out the window and laughing hysterically as they fell to the bush below. Must have been quite the sight.

How Much is Enough?

I still struggle with this thought. Are we doing enough? Should we fill in his weekend with more hours of therapy, or let him have that time *free*? How much biomed is enough? Should we spike everything he consumes with supplements, do we give him shots of B12 to possibly get some more improvement? What about Nick himself? What would he want? How much improvement do we need to see in him before we can truly say, We are happy? What does Nick think of all this? Does he think that he will never be enough for us? I certainly hope not. I am not trying to start a debate over different therapies-we certainly have seen big gains with doing some biomed, as well as traditional therapies. I know I want the best for Nick. I want him to be the highest functioning that he is capable of, and I am not about to stop any of his programs. But something in me also thinks that he needs to just BE sometimes. He needs time to be his own person-just like we all do. And if being his own person means that he likes to spin toys, and talk non-sense for a little while, why can't that be OK too? He has tons of moments throughout the day where he is looking at us, following directions, following points, imitating, and saying things appropriately. We have spent such a long time trying to make him a part of our world,that we sometimes miss the beauty of his world.One day last week, the tables were reversed.

We were in the boys' bedroom playing around on the floor. Nick came over and kneeled at my side. He then took both of his hands and put them on my cheeks. He proceeded to move my head side-to-side like he does. He was trying to show me something. He wanted me to be a part of his world-he let me in. He enjoyed every second of it-and looked directly at me with a smile from ear-to-ear. For a brief moment, I was in Nick's world.

Word!!

Nick has learned the meaning of the word "No"-and he is using it quite frequently I might add.
"Nick, give me toy"
"No!"
"Nick, give me remote"
"No!"
And the kicker is: Nick is now telling Michael No. He especially does this when Michael tries to take something away. Then it is a 'Noooooo!' sound.

Nick also told our friend "K" to "Give me kisses" when she left.

A Bit of Comfort...

Today is a day to be marked on the calendar; and fortunately it will be because I am sharing it with the blogosphere!

Nicholas sought me out for comfort today for the first time ever. Usually what happens is Nick starts crying somwewhere in the house, and it is up to us to hunt him down and console him. It has been this way since he was born. He never came to us when he was hurt or upset.

Tonight, my baby boy needed reassurance and he came to me for it. Something so simple; but yet a monumental breakthrough. I was in the kitchen and Nick was in the living room. Something did not go his way, and he got upset. The sliding door to the kitchen opened, and my little man walked through and put his head on my shoulder, still crying. I enveloped him in my arms and talked softly to him. A few minutes of cuddles later, he was satisfied and back on his way. Tonight, we moved another mountain in this struggle.

Hakuna Matata!!

We have had quite an eventful week. Our friend "K" is in town visiting and taking care of some last minute things before moving to Texas. I took Michael with me to pick her up from the airport on Tuesday evening. The boys took to her immediately. We brought her back to the house and got her settled in Nick's little work room for the time being. Nick and Michael have loved having an extra person around to play with. She is so good with the boys. We hated to have her leave us, but people tend to move on with their lives as they need to. The boys have accompanied Mike her hither and yon as she runs errands. Yesterday they had to take her car to the dealership for some minor repairs, and as they were talking to the service guy, Nick managed to get behind the counter and turn off all the lights. Everyone else had a look of confusion on their face, Mike and "K" realized in a few seconds and shouted "Nick!". We get those looks quite often-and it is the same result, we know who the culprit is. He can be "very,very sneaky!!"

I had to get them new toothbrushes,because throwing them in the toilet is a sure fire way to get new ones....or rather, Nick throwing them in the toilet. Along with the new toothbrushes, I also bought locks for our toilets and installed them immediately. No worries. I got two of them that sing a tune as you brush. Nick's sings "Hakuna Matata" from "The Lion King". At first he was not sure what to make of this, but now he loves it and laughs the entire time he is brushing!!

"K" brought the boys a big bag of souvenirs from Thailand, and Nick has taken to one of the T-shirts she brought. He was carrying it around most of the morning on Wed. Mike asked him if he wanted the shirt on. Nick said "Shirt on." Well, when Mike put the shirt on him, he realized he could not carry it around anymore and then exclaimed "Nooooo! Shirt OFF!" Poor K was also getting barraged with Nick wanting her to "FIX IT" when one of his toys was not lighting up. The poor girl was clueless as Nick shoved his rhino flashlight at her; until it was explained that all she had to do was turn it on and he would be happy. Nick has surprised us with taking this change rather well. We had to take the top bunk down in order for her to have a bed to sleep in, and he has adjusted with little problems. Change has always been easier for him when he is at his own house. There are a lot of "knowns" around here...and it is the "unknowns" in the rest of the world that are unsettling to him. It was an experience schlepping this kid across the country and staying at a different hotel every night ;)

The List..

My list of things to do today somehow keeps growing. Just as it does on most weekends.
Our morning routine on the weekends goes something like this: I wake up(sometime after the boys do of course) and sneak into the shower while no one appears to be "needy" of anything. I get dressed and venture out into the abiss of the livingroom; which by now has all the pillows on the floor, maybe some clothing,and of course toys. I give Nick a sippy cup and that will usually last him until I get the dishes done and make breakfast.
Breakfast is two waffles with syrup. If we are out of waffles, then our day is already off to a bad start. Nick loves waffles. Pancakes are a suitable substitute, but anything else is met with uncertainty and whininess. I also fix breakfast for Michael. Sometimes he wants waffles too, sometimes cereal, sometimes just bacon will do.
Then we hang around the house for a couple of hours. I am trying to catch up on laundry-so the washer is usually running all weekend. Depending on the weather, I take one of the boys on any errands I might have just to spend a little time with each of them.
Today I need to do a few things. More laundry. Go to the grocery store. Go to Safeway-they have bigger containers of Rice Milk, and lunch size containers. Clean our bedroom, clean the toilets, and straighten up the house a little. I might take little Mr Sunshine with me, he likes to go places and seems to have fun no matter how mundane the task is.

The dreaded Cold.....

UGH! I hate it when Nick gets a cold. Not just because my baby is sick, but because he gets snot ALL over him....literally. He wakes up with it all crusted to his face,hands,shirt,hair,etc. It is quite literally "here,there,and everywhere!" Then comes the sneezing. Rocket propelled goop goes all over-it is really quite an experience. Not so much a pleasant one either. Here's to snotless days very soon.

Headbanger's Ball.....

We have a new hole in our wall courtesy of Nick. Saturday morning we saw a part of Nick that we thought had passed. Headbanging. Nothing seemed to go right for him on Saturday morning, and he spent much of the morning being crabby and pissed about things. I can only take so much crabbiness before I bust, and after about two hours of crying/whining/general unhappiness; I sent him to his room. He spent a little time in there "cooling off", while I relished a few minutes without any screaming of any sort. After our manic morning, we had quite a lovely afternoon. I took my little bud to Wal-Mart, and the outing seemed to be just what he wanted. That boy loves to go bye-bye. You say the words and he is standing at the door like a racehorse waiting at the gate. When you open it you had best better be ready to run after him!

As we walked from the parking lot, I looked down to see Nick in true bliss. It was raining out,but that did not matter to him. He was looking up into the heavens, smile from ear to ear, letting the rain fall on his face. I must admit, part of me was jealous-he was enjoying that with every fiber of his being-something most of us are not privvy to because it would be deemed we were "strange".

Sunday was a better day for us. Although Nick did bang his head once. We can kind of track how much he has grown by the height of all the dents in our walls. The previous dents are about 4-5 inches lower than the current ones. =)

Monday we finally got the package we had been waiting for. I got two bottles of the KidsChelate from www.evenbetternow.com and gave him a dose in his juice cup. I crossed my fingers that he would drink the juice, and he did! I was so happy! We have tried some supplements this way only to have him throw the cup to the floor after one sip. The only thing I have noticed so far is an increase in farting. Not sure what that is about yet. LOL!

Patience.......

I am sorry to say that this is not something I have had a whole lot of the past couple days. It does not help me any that it has been raining constantly for what seems like forever. Nick has been trying some new foods; which is a good thing. BUT, he is not really into swallowing them. So, what does he do you might ask?? He hoardes it in his mouth. It makes what should be a 15 minute meal into a 45 minute long ordeal. [[sigh]] Then, once he is out of his chair, I still have to watch him because I have caught him dumping the contents of his mouth onto the livingroom floor. [[Grrrrr!]]

His OT was supposed to start today; but was cancelled due to the therapist having to teach a class or go to a class or something like that. I was too annoyed to really pay attention.

Right now I am trying to hold my sanity together and make it to their bedtime. Which, from the looks of it, will be promptly at 8pm!

Nick's Favorite Toy

Who knew a play microwave would be such a BIG HIT?? This is the Cadillac of play microwaves though. Not only does it have working buttons, but a timer, a table that turns inside, and lights that come on just like the real thing! It even beeps when the "food" is done! Needless to say, lots of items around the house get "nuked" in this contraption-the phone,pens,my hat, socks, and whatever else Nick can jam in there. We have already had to replace batteries four times since Christmas. But, who could not love this face??

By the way, the REAL microwave is JUST as fascinating to him!

Diaper Dilemma...

I came across a bit of a dilemma today at the grocery store. Earlier last week I had gone to Safeway(not our usual store)and bought a big pack of Huggies Overnights. These are wonderful diapers for Nick as they hold up overnight, and it was truly nice to have a week where I did not have to change sheets. Anyway, I went to our usual store today to stock up on some items since school is starting again tomorrow(maybe....as I left the house this afternoon it started snowing and has not stopped). One of the items we needed was diapers. I looked for the big pack of Huggies...none to be found. They had the Overnights, but only 27 in a pack. UGH. If we use those all the time we would be buying more in just 2-3 days(some get sent to school). But, if I buy our usual big pack of Luvs and use those at night, we are back to changing sheets at least twice a week. I do not like doing more laundry than I have to. I finally decided to get both. Yes, it was expensive, but it is either a few extra dollars, or an extra load of laundry?? Hmmmm. Hopefully this year we can get Nick potty trained! Maybe I will start doing my shopping in both stores??

New Year...New Things A Happenin'

Nick starts his Occupational Therapy on the 7th-we have been waiting for this for 11 months!! I still cannot believe it took that long! Yesterday I ordered some chelation drops for children and a hair test to determine if he has heavy metals in his system. We have such a difference in him after the clay baths, that we wanted to see if it will get even better after he gets the drops. He is still very much autistic, but I have read that heavy metals can also affect digestion-and Nick has lots of issues there. I am still waiting a response from his doctor about the comprehensive digestion stool analysis-maybe looking further into his digestive system will lead us to more clues about him. As for Nick, well, he is still just our Nick.. :) People still think he is adorable when he goes up to them and plays "hide and seek" from mommy or daddy in the stores.

Wednesday night we did not do much. I went over to the neighbor's for a while and chatted with them-Mike stayed home with the boys. I came back home and spent the last few minutes of 2008 with them. Nick went to bed at his normal time-no sense in having a super cranky 4yr old the next day with everyone else who was tired.

Thursday I went to Safeway and bought more rice milk for Nick since we had run out. I also found some gluten free/lactose free Pedia Sure. Nick loves the regular stuff, and I had not noticed if it was gluten free/lactose free before, so I bought it. He had some of the regular stuff last week, and he also had some pretty narly diarrhea a couple of times-so maybe that was the cause. If so, then I know the poor kid really cannot handle milk. Lactose intolerant maybe??

Friday we took down all our Christmas stuff! I was ready to see it go. Now things are back to normal, and we can get on with 2009. We went and bought some storage cabinets for all the gaming crap that we have(i.e. controllers, games, and the other crap that seems to accumulate with that stuff). We also bought a dresser for Nick! It's only been almost FIVE YEARS since he graced us with his presence-I guess he is here to stay..LOL! Nick was having fun walking beside the cart. I rarely ever let him do this when I am out alone with him; he likes to run and it makes things very difficult. It is almost to the point where he will need one of those leash thingies-he is just getting too tall for the baskets. It is hard to get him in and out of them because his legs are so long. But, when we are all out together, we usually let him walk. After we got all the stuff, we headed to Quizno's for dinner. They are familiar with us there and know Nick. He was enjoying every minute of this and was "silly-talking" the whole time. There really is no other way to describe it-it is Nick's own made up jargon that he does when he is happy. He had two pieces of the Quizno's tape and was in heaven. It felt like we were a normal family. We were eating in peace, and Michael was astonishing us by eating all the hot peppers he could tolerate! We all had a great time!

HAPPY NEW YEAR!!

2009 already??!! Where on earth does the time go? I just have a couple of "resolutions"

1. Get more melatonin We ran out last night. I was scraping the bottom of the bottle to get the few drops that remained. Nick continues to wake up in the middle of the night laughing uncontrollably. At least for now, he stays in his room.

2. Get more rice milk Hopefully we can find an open grocery store to get more of this milk.

3. Stop getting toys that speak Spanish Nick got one of those for Christmas. It speaks both English and Spanish. Right now I am listening to "Old Macdonald" in Spanish. Nick barely speaks English-all we need is for him to learn Spanish and start talking to us. I have a feeling he will though. It sounds a lot like his own made up silly-talk that he uses on a daily basis(he says what sounds like "ehnurlygurd")

4. Try to understand Nick more I am talking about inside and out. I want to find out what is going on with his digestive tract, have him tested for heavy metals, and some allergy testing. Even though these things likely did not "cause" him to be autistic, they certainly are not helping him any. Especially his digestive problems. If we can just find out the cause of that problem, it will be a great year. Poor kid is plagued by mushy,loose, or runny stools 90% of the time-something is going on.


As for what "causes" autism-we may never narrow it down to one thing. I think that Nick was autistic from birth. He may have started out seemingly "normal", but on the inside things were already going awry. It is possible that he was never able to tolerate certain things in our environment; and on the surface it initially started as a bad case of eczema. I have since read that eczema originates in the gut. So, that was one thing. Nick also seemed to me like a very "floppy" baby. I could not put my finger on it exactly, but he was not sturdy like Michael was, despite him being bigger. Maybe his body was never able to excrete things like heavy metals-then he gets vaccines; which his already sensitive system just could not handle very well. I think ALL of these combined play a part. Why not? We are a society that has become filled with people who have allergies, irritable bowel syndrome, anxiety, depression, etc. Someone has to wonder if things in our environment are getting to such a toxic point that our bodies cannot handle it? These are just some of the areas my mind wanders to occasionally. I believe all these things could be a factor in this whole autism mystery. But, what do I know? I am just a mother to an autistic child who has been LIVING this disorder for almost five years.



TV. I am sorry, but if TV caused autism, then Nick would be perfectly fine. In fact, Michael would be the one with Classic Autism if that were the case. TV does not cause autism. End. Of. Story. More on autism myths later.

Little Brother vs. Big Brother

This morning started out very serene; much like the winter landscape photo on the post below. The boys woke at 8am and wandered out to the living room. I was still fast asleep until around 8:30 when I hopped in the shower. Then it was on to the job of opening up all the presents. Nick left that up to us-all he wanted to do was play with the stuff once it was out. I think he was a little too overwhelmed-but he handled it beautifully(aka...no meltdowns)Since things have quieted down, seems Nick is silently taking stock of the goods. He has been wandering over to Big Brother's pile of goodies and giving them the eye. He has even started the "sneak attack" approach. A certain forbidden item has caught his eye and when Big Brother is not looking, Nick does a quick snatch and runs to a part of the house out of view. Once the two meet however, it's "game on". Michael snatches back, Nick once again waits til Michael is distracted and the game continues. I could watch this for hours...it is like a game of chess...with Nick silently plotting his next move.

Happy Holidays!

Hope everyone is having a wonderful holiday! This time of year always tends to make me a little sad. For the simple reason of just autism. There are two times of the year that really do this to me: Christmas, and Nick's Birthday. Don't get me wrong, we still celebrate and have loads of fun, but it becomes blaringly obvious that we are still so far behind. I know I should be extremely thankful for all that I do have; but dang it, I just wish Nick could enjoy things like the rest of us-if only for just a day. He DOES enjoy things, I shouldn't say that he doesn't, but, one day I would like to hear from him how much he wants to bake some cookies,or, he wants hot chocolate after sledding-simple things like that.

We have had a few tantrums since school has been out. Poor kid, he got thrown into a family who likes to do things on a whim sometimes,and it rocks his little world. Yesterday he got mad because he had to stop riding on the sled and get in the car. He screamed all the way to the store. Today he was flying off the handle for most of the morning-the smallest things would upset him. His schedule is all flipped around, and we are doing things we don't normally do because it is Christmas.

By the way, Nick loves to go sledding. We found out the other day when I took both the boys out in the snow. We have had about a week full of winter storms, and there is about 6-8" of snow on the ground. Nick LOVES to walk in it, put his hands in it(of course, he discovers it is wet and then promptly wipes his hands on my sweater with such a look of distress that I have to laugh) and let it fall on his face. We are supposed to get 1-2" tonight, and another 1-2" on Christmas Eve. We are even supposed to get some on Christmas morning; so I am super excited. This will be the boys' first "White Christmas". We don't have much planned for the big day itself. Open presents, play with our new toys, and enjoy the day. For one day I plan to just enjoy the day and not think about anything but my three men. Happy Holidays Everyone!

It's Beginning to look a lot Like Christmas....

Michael and I took a walk down the street, and I thought the tree was pretty.

The side of the house. I-5 is right on the other side of that cement wall.

Michael. Nick was standing in the doorway inside the house. He does not care too much for the snow.

Looking down our street from the driveway.

Our snowman was getting weighed down with the real stuff!
This was our first snowfall of the season.