More Outrage....

It is sad that in today's world, people still find a way to blame autism on the parents. According to this guy, if you just tell Nick to stop acting like an "idiot" then everything would be fine. That Autism today is like Asthma years ago...everyone has it so they can get more money. HUH?? More money??? Is that what he thinks we get??!! What is even worse, is that this guy broadcast this show all over the country. I can't even think of the words to type how I feel right now. I feel like he might as well have called Nick an "idiot" or "moron" right to his face. People who know nothing about autism should keep their mouths shut. We have enough to deal with without people secretly "blaming" our "bad" parenting. These kids are NOT "idiots". Why he would even say this about children in the first place?

This just makes it that much harder for the public to see past the myths of autism. Here is the article that I am talking about:

http://mediamatters.org/items/200807170005?f=h_top

On the July 16 edition of his nationally syndicated radio show, Michael Savage claimed that autism is "[a] fraud, a racket." Savage went on to say, "I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is. What do you mean they scream and they're silent? They don't have a father around to tell them, 'Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot.' " Savage concluded, "[I]f I behaved like a fool, my father called me a fool. And he said to me, 'Don't behave like a fool.' The worst thing he said -- 'Don't behave like a fool. Don't be anybody's dummy. Don't sound like an idiot. Don't act like a girl. Don't cry.' That's what I was raised with. That's what you should raise your children with. Stop with the sensitivity training. You're turning your son into a girl, and you're turning your nation into a nation of losers and beaten men. That's why we have the politicians we have."

Savage also stated: "[W]hy was there an asthma epidemic amongst minority children? Because I'll tell you why: The children got extra welfare if they were disabled, and they got extra help in school. It was a money racket. Everyone went in and was told [fake cough], 'When the nurse looks at you, you go [fake cough], "I don't know, the dust got me." ' See, everyone had asthma from the minority community."

Talk Radio Network, which syndicates The Savage Nation, claims that Savage is heard on more than 350 radio stations. The Savage Nation reaches at least 8.25 million listeners each week, according to Talkers Magazine, making it one of the most listened-to talk radio shows in the nation, behind only The Rush Limbaugh Show and The Sean Hannity Show.

From the July 16 edition of Talk Radio Network's The Savage Nation:

SAVAGE: Now, you want me to tell you my opinion on autism, since I'm not talking about autism? A fraud, a racket. For a long while, we were hearing that every minority child had asthma. Why did they sudden -- why was there an asthma epidemic amongst minority children? Because I'll tell you why: The children got extra welfare if they were disabled, and they got extra help in school. It was a money racket. Everyone went in and was told [fake cough], "When the nurse looks at you, you go [fake cough], 'I don't know, the dust got me.' " See, everyone had asthma from the minority community. That was number one.

Now, the illness du jour is autism. You know what autism is? I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is.

What do you mean they scream and they're silent? They don't have a father around to tell them, "Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot."

Autism -- everybody has an illness. If I behaved like a fool, my father called me a fool. And he said to me, "Don't behave like a fool." The worst thing he said -- "Don't behave like a fool. Don't be anybody's dummy. Don't sound like an idiot. Don't act like a girl. Don't cry." That's what I was raised with. That's what you should raise your children with. Stop with the sensitivity training. You're turning your son into a girl, and you're turning your nation into a nation of losers and beaten men. That's why we have the politicians we have.



Mr. Savage should have listened to his father.

Here is the LINK to sign a petition to FIRE Mr. Savage

The Dread of Soccer Season.......

It is soccer season again, and I find myself having mixed emotions. I love watching Michael play and practice, but it can be a painful reminder of how our lives are so much different. When you see a child younger than yours who is able to play a simple card game with his mom, or one who tries in vain to interact with Nick...but instead he walks away still spinning the blades from a long lost toy helicopter, completely ignoring all attempts to get his attention. Do their parents even realize what they have? Do they take for granted that they hear "Mom" a hundred times a day? Or that their child can tell them a story, or even tell on their brother/sister? Do they realize how I long to hear those things from Nick? That just even pointing to his nose takes weeks of repetition and numerous rewards. Don't get me wrong, I realize that we could have it so much worse, but it pains us to see how far behind our little man is.

"Nick is nearly five, but he babbles like a 15 month old" I said to Mike today. "But he IS babbling." he replied positively. That seems to be how things are with us. When I get down in one of my moods, he points out the positive things. I do the same when he gets down. Thank goodness we never seem to have these episodes at the same time..LOL!

Nick has a way of making me laugh at all the right times. Just as I finished typing this post, Nick grabbed Michael's juice box and finished it off! The best thing was HE DRANK FROM A STRAW and did not spill a drop!! Nick, you made mommy laugh tonight. Thank you sweet boy!

Chaos Returns....

Yep, I am back home again that's for sure. Chaos is just a normal part of my life. It started at 6:30 a.m. This is what time the little men in my life get up to get ready for school. It is a flurry of getting boys dressed, fed, teeth brushed, shoes and for now, light jackets on and backpacks ready. They were all shined up today with matching jackets from New Zealand, and their red backpacks. The bus arrived at just after 7am and I walked with them to meet the bus driver. It has been a different driver each year; and I am already missing the one we had last year. He was an older,grandfatherly like gentleman who always greeted us with a warm smile and a jolly "Good morning Nicholas!! How are you today??!" Maybe our new driver will eventually do that, but we are still getting to know each other. Michael sits with Nick in the morning,which they both really seem to like. There is a mountain of school paperwork that I need to fill out...eventually. Don't have the energy to do it right now. We had therapy at UW today and Nick did awesome! He pointed to his nose, clapped, bounced, and did puzzles. He must be learning songs in school again-he came home humming "Ole My Darling Clementine". He has a wonderful memory for music. He has become very animated over the last few months. He makes eye contact, loves looking at faces, and seems to be coming into his own. That is my little man. Right now he is enjoying throwing a Spongebob ball up in the air(a suitable replacement for his love of dropping things) and happily chattering away as it hits the floor. And yes, we are letting him throw small balls in the house-it is much better than him throwing remotes, telephones, batteries, and anything else he can get to...all for the simple pleasure of the sound it makes as it hits whatever is in it's path. It also has the plus of being something that looks like normal play! A few seconds ago he did manage to get a hold of the phone and hide it in the kitchen cabinet-Oy Vey!

Home Sweet Home

Just wanted to let you all know that I made it home this evening. I missed my little "bubby", and of course my big boys too. The first thing Nick did when he saw me was try to take my hat off, and put his hands on my face. He smiled with his whole body. I said hi to him, and he said hi right back. We got home and handed out the souvenirs. I had originally bought two stuffed animals for Michael since he likes them so much, but Nick took an immediate liking to the stuffed Kiwi bird so I now suppose that is his. Sometimes you just don't know what he likes until you try. He carried that around all evening. When you push on it's side it makes a sound like the Kiwi (the bird of New Zealand in case you were wondering). Nick would set it down and bang on it to get it to make noise. We even caught him imitating the birds noises. That ought to be a real hoot at school...I can just imagine him tweetering and clucking all around the place!LOL! Good thing his teachers have a sense of humor! Even with all the misgivings about therapies and the school district, I have to say that I really love his teachers. They always focus on the things he CAN do, and they really see his personality. My little man. When I talk to Mrs. R, his head teacher, she raves about Nick and how far he has come since starting the program. He thrives on lively, bubbly, spirited people who don't just see the diagnosis he has. Afterall, he is a little boy first and foremost. More people need to focus on the PERSON, not the AUTISM.

Almost home!!

Tomorrow I will be getting back home to my three wonderful boys! I got to talk to each of them today and it was so good to hear all their voices! I even had a conversation with Nick..bless his little heart. He was coached by daddy on what to say. It went something like this:

(with dad in the background telling Nick to say "Hi mommy")
Nick: Hi Mommy
Me: Hi Nicholas!
Nick: Hi Nicholas!
Me: How are you?
(Mike in the background: say I am Fine)
Nick then proceeds to speak some happy little jargon that I cannot understand; but find adorable anyway. He is using his happy voice, and whatever he is telling me is exciting to him.
Me: Really??! WOW! I Love you!
Nick: I sorry
Me: What are you sorry about Nick?
He makes a disgruntled sound, and this I know is the end of our conversation. I tell him I love him, and he says Bye Bye.

Goodbye sweet boys! I will see you tomorrow!!

Feeling a bit defeated today..

You ever have one of those days?? I am having one today. All last week Nick had been doing great with his labeling of "car,spoon,cup,and ball". He got them right every time. Anyway, we went to therapy today and I told her all the wonderful things he had done since last session. Do ya think he did them this session?? NO WAY! He was fine the first few minutes, then, sometime during the alphabet puzzle, he just lost it. He had a hard time even completing the shape sorter; which is normally very easy for him. After that, he wanted nothing to do with anything and proceeded to lay on the trampoline and cry and stim. We could not even touch him. I felt so helpless because I could not soothe my own son. I had no idea of why he was acting that way either. He was fine in the waiting room!

After that ordeal, I came home to find my hubby standing outside reading a flier that had come in the mail. It was from the DDD advertising all of their "great" programs for children & adults with disabilities. Hubby proceeded to call them. Basically, from what we were told, that Nick is on another freaking waiting list-that he just got on it in June-they only take 100 kids per YEAR-and the ones who are deemed "emergencies" automatically go ahead of him. Somedays I just don't get it. WHY is it so hard to get help?? Time for me to get back into school so I can become part of the solution to this problem. I ended up taking the summer off. My original intent was to just take one semester off, but since I am going away for two weeks on the 30th, I am waiting until I get back to enroll.

Yes, you read that right. I am going out of town for two weeks. I leave on Saturday. Leaving all the guys at home by themselves is daunting to say the least. I have full faith that Mike can handle things though. For me, it will be two weeks of not thinking about autism. Although it is work related, I am going to try and relax somewhat. I might end up taking the lap top with me, so that I can e-mail and post pictures. NOt sure though. If I don't get on again before I leave, I wish everyone a safe Labor day and I will see you all in Sept!

Just a few minutes.....

I just got back from my run and I am savoring the last few minutes I can of absolute piece and quiet. Just a few more minutes is all I need to mentally prepare myself for the day. My "To-Do" list is always present, it never seems to get any smaller. Trying not to think and just BE right now.

More Random Thoughts...

I have been thinking about changing the name of the blog. I just feel like it has grown away from being just a "day in our life". I have reached a point of total acceptance of autism. I don't like some parts of it, but I accept it none-the-less. For the first year and a half or so I devoted any amount of spare time I could to researching treatments and supplements on the internet. This became my passion-it more or less took over my life. Now, we are at a place with Nick that we are comfortable with. For right now. You see, with autism, things seem to change on you just when you think you have everything figured out. Phases come and go just like with any other kid. Now, we are getting into the "I'm being naughty and I know it" phase. Nick loves to twirl things in his hands, and then crash them to the floor. He crashes everything to the floor nowadays..which can make for deafening noise in the kitchen. He especially likes how things go crash in there. But, with each passing phase, I find myself missing some of the things he used to do. I simply loved his Happy Dance. He stopped doing it quite some time ago, and I catch myself watching videos of this "long lost" stim with a huge smile on my face. I LOVE the stim he does now though. It is so endearing and unique to Nicholas. He comes right up to my face and puts his hands on my cheeks. There is nothing better than this "hug" from Nick.

Monday was a good day. I went to PT in the morning, and the boys decided to sleep in until around 9am. I went in when I heard the first stirrings of activity, and was greeted at the door with an exuberent Nicholas. He had been busy arranging the room as he saw fit, which included taking all his diapers out and lining them up on the floor in the middle of the room. He also had moved the air hockey table and his small dresser. He greeted me with "Close the window pwease". Yes, Nicholas, the window will stay closed because it is going to rain today. "It's gonna RAINNNN!" Yes, my lovely boy, it sure is. Sometimes, a little rain is just what we need.

Letting my thoughts out...

Today at work, the guys and I were sharing stories from our childhoods. Stories that included siblings and the trouble, and fun times had with them. Then it hit me almost like a ton of bricks...Michael likely won't have such stories of him and Nicholas. They have a relationship of course, they are still brothers. However; theirs is a drastically different relationship than most. I found myself getting extremely sad by this fact, and just for once, wished that we had a third child. I did not wish for Nick to be something he is not, but instead, a third child. Maybe that one would have been "normal", and then Michael could share stories with his co-workers? He mentioned in passing this week that he wished Nick was not autistic. He loves his brother immensly, but dealing with Nick and his "issues" can be very hard, even for us.

I know that Nick is only four years old now, and that a lot can change in the next 14or so years. We have to face some hard realities. Nick may never be able to live by himself, may never speak much better than he does now, may never do a lot of things. I don't think about this every day of course, otherwise it could be very depressing, but every now again these thoughts creep into my mind. These are the "what if's?" we face. Michael is patient, loving, caring, and has put up with more than his share some days. He has been dragged to numerous therapy sessions, had to leave events because they were too noisy for Nick, put up with Nick rearranging the bedroom in the middle of the night, and he has done it all without question. He is such a trooper. Some days I just wish he did not have to be.

Another hurdle overcome as a family!

We have been slowly getting used to our life without Maggi. A week after she passed, we received a card from the vet's office that had a lock of her fur and her paw print. A lovely reminder of a wonderful friend. I found myself getting choked up again as I once again touched her fur; which was wrapped in a little pink bow and taped to the card. We have missed seeing her in the back yard, but I know she is in a better place.

I have been trying to contact the doctor so that Nick can get another eval. His twitching movements have not gone away. One day last week when I was feeding him I saw his eyes start to flutter from side to side. He certainly was not moving them on his own in that manner and you could not get his attention during this time. When I did call the Dr; I got the receptionist who told me that a spot would not be available until Sept. I told her that he has been having these twitching episodes, and she then took a message for the Dr to call me. Other than these episodes, he is doing beautifully. He has become fascinated with the letters of the alphabet. He will spend countless hours lining them up, carrying them, standing at the fridge and saying what they are. During therapy Tuesday he persisted in grouping them on the mini trampoline and admiring them. He knows them all on sight, and even will say their sounds. He is simply mesmerized by them, and will protest if anyone tries to thwart his "organization".

Last weekend a neighbor told me about a drive in movie theater in Auburn. I looked it up online, and was excited about finally being able to see a movie with the whole family! Since Nick cannot tolerate the noise level in a regular theater, we have not been able to see a movie with all four of us. It was worth a shot, and MUCH cheaper than the theater we normally go to. We also got to see two movies for the price of one!! SCORE!! We piled in the Jeep, and the four of us spent a night at a drive-in. It was a great experience and it was nice to see a movie with my hubby! The boys ended up falling asleep during the first movie; afterall, it did not start until after 9pm, and our boys are on bedtime schedules. Their little bodies could just not make it past 10pm! We will find a way to have as normal life as can be with autism. It will not stop any of us!

Goodbye Maggi...

We will miss you!

Maggi earned her wings and went to heaven on July 25th at 2pm. She had come down with a uterine infection and was not able to eat or drink anything because she would just throw it up. We took her to the vet, and they said her kidneys were failing, she was severely dehydrated, and she would need emergency surgery to remove her uterus. She was so unstable, that they could not guarantee she would live through the procedure, and even if she did, she would likely have lasting kidney damage. Her body was in shock and her breathing was very difficult. We let her go gracefully to play with the angels. We kissed her and petted her all the way to heaven and told her how much we loved her. Nick has a way of saying poignant things at the right times, and this was no exception. Before Maggi took her last breath, Nick came over and put both his hands on her back/tummy. He did not play in her fur like he always did; but placed his hands on her and said "Belly" three times. He then went to lay on the little couch and said "Time to go night night". He just has a way about him that I have never seen before.

What Now??!

Yes, I know, I have neglected you; my blogger friends-but, I swear there is a good reason. Last Sunday, as I was preparing dinner, Nicholas was laying in his favorite spot underneath the fan. I looked at him and then I noticed something was strange. His head was shaking, and not in his normal way either..but it seemed like little jerks and then it was gone. Monday came and the head issue was long forgotten. He had a diaper with some diarrhea in it first thing in the morning-but again, nothing serious, as it was the only one he had. We are in therapy when the twitches and jerks come back. This time, they affect his whole body. They last maybe a second or so, but they kept coming. He did that like 10 times during the session. It was so bad that his therapist stopped the session a few minutes early and was very concerned about this new development. I got home and told Mike about the twitches. He had not seen them, so at the time, he did not think too much of it. That evening, when I was napping, Mike noticed that Nick's legs were twitching. At first he thought Nick was "dancing" on the floor, but then he realized that the rest of him was completely still. (Which, if you have seen Nick, you know that this is very unusual movement for him). I called his Dr the very next day, and was told to record every time this happens and all the details leading up to it, and what happens during it. She wants to see him sometime in August, but will see him sooner if he gets worse. He went most of the week without another episode, but had another on Saturday night as I was getting him dressed for bed. He was leaning on the bed, and again, his whole body jerked. I am hoping that the Dr will put in a referral for neurology and we can "see" what is going on. If she does not automatically put one in, I will request it. They are jerky, and come on too suddenly to be "normal". I think in the back of our heads we KNOW what these are, I just don't want them to get any worse. He is doing beautifully otherwise. He is using words, making requests, and trying to really connect with people. He has made some huge leaps in a rather short time. He is starting to not like having dirty diapers, and came to me a few days ago saying "Nicholas, diaper". Yesterday he was whining because he thought he had "Poo-Poo" in his diaper and he does not like that. Maybe he will be potty trained by five??!!

America's Got Talent.....

Not sure how many of you all out there in blogland have heard about this extraordinary young man. He is 9yrs old and was diagnosed with autism when he was two. He would sing in the bus on his way to school and back. This was news to his parents because he did not speak at all. I could not watch this without tearing up. He is such a sweetie and I cannot wait to watch it this week to see how he does!

GO DAVID!! We are rooting for you!!!

Vacation...part 2

It has been an interesting vacation to say the least! Wednesday started with daddy calling the dealership at 8am to see what the heck was going on with our Jeep. The guy was getting fed up with all of our calls,but daddy did not care. He just wanted to get this whole thing fixed so we could enjoy our vacation! The repairman told him that he was several days behind on fixing cars, and he did not know when he could get to ours. Needless to say, this distressed everyone; especially mommy. We needed a car to get home with, since staying another week would be too much money. With all this stress going around I was getting rather un-hinged sometimes. Luckily, our friends understood, and did not take any of my outbursts personally. Mommy and daddy decided it might be best to upgrade our old Jeep;so we ended up trading in our old Jeep for a new(er) one. This newer one has all the luxuries! Anyway, we got the car thing settled, and then on Thursday we headed off to Silverwood Theme Park!!

We were excited about this day. My brother was especially excited since he was getting to ride the roller coasters for the very first time. All of us went on the first ride; which was some log splasher thing. I personally think they could have done without all of the employees talking over loud speakers...they were not using their inside voices! I tried not to come unglued; and I think I did pretty well. We all sat in this log thingie and went for a nice quiet ride..until we got to this big drop! We plunged down and that was the worst bath I ever took..no matter what daddy tried to say! I was scared for a bit, but I tried not to let mommy see, I was brave. After a few more rides, it was time to hit the water park. YEAH BABY, YEAH! That was MY domain!! We sunned ourselves, played in the lazy river, and ruled the toddler attractions! I was thoroughly over stimulated!! Mommy thought I would sleep easily that night; but she was wrong! I just could not settle down and she had to give me some of my sleepy vitamins.

The next day was the 4th of July; and we really did not do too much. We cooked out hamburgers(they smelled really good, so good in fact, that I never want to eat them, just smell them) and then went to meet up with our friends at their house. We went to Riverfront park to watch the sky light up. It was most fantastic!! If you love lights like I do; then you should see these lights!!! After you get used to the loud BOOM they make, it really is very neat!!! After the loud lights, we went back to the parking lot and waited for traffic to die down before heading home. I was introduced to "E" and "N"'s grandfather; who had a strange car that kept beeping. I tried my best to find out what it was so that I could fix it, but the dang thing would not stop beeping no matter how hard I banged on the seat. I never did find out what everyone was laughing about? I think that car is messed up and I tried to tell everyone that it was not funny; but they kept on laughing anyway. Maybe I missed something?? Nah, that car is totally busted!! Why else would it beep everytime I banged the seat?? Any mechanics reading this??

Today we just hung out again and relaxed. We are heading back home on Monday, and no; it's not funny!

The Vacation Saga Begins....

We started our little journey yesterday just after 11 am. All went smoothe with the road trip, and we were all looking forward to an uneventful vacation. I somehow got stuck on the phrase "It's not funny" for about 20 miles. Everyone was laughing at what they thought was just a random phrase I was saying. I kept repeating "It's not funny" over and over again. We got to our friends' house and stopped to chat for a while before heading to find a campsite. Daddy turned the car off, and we all got out. A little while later, daddy went to start the car again, and all it did was "click,click". I mean, I tried to tell them "It's not funny", but did they listen to me?? Of course not. So, we had to get help from the neighbors to get the trailer off the car, and hitch it to one of their trucks. So, mommy and all us kids stayed with our friends and played while daddy rode with the neighbor guy to the campsite. We went to Wal-mart to get some necessities to last us until we could get situated with everything and collect our thoughts about the car thing. After a LONG day, we all made it to bed around midnight.

We woke up today and started working the car problem. Mommy called our friends so they could come and get us, and see what we could do to fix our problem. Daddy went to start the car again to humor himself, but the car just made the same clicking noise. Daddy called around to a couple of mechanic places and to the Jeep dealership, as well as scheduled a tow truck guy to come pick up our car. Mommy made a phone call to see if we could get a temporary loan to fix the car and pay for the tow truck costs, and possibly a rental car. She still wanted us to be able to do some fun stuff on our vacation,instead of just be able to fix the darned car. So, the tow truck guy arrives and we all go out to meet him. He tells daddy to try and start the car again, so daddy does. What do you think happens next?? The car starts! We quickly pile in to two cars, and follow our friends to the dealership. By the time we get there, their service dept. is closed, and so is the rental car places. Stranded. At the dealership. We figure out a way to get 8 of us back to the house, with leaving the Jeep at the dealership. After "T" dropped off his wife and kids plus my brother back at their house, he came back so that mommy,daddy, and I could go to the airport to get a rental car. This was fun for me...a big windstorm came and I was cracking up because the wind was spinning my pinwheel SOOOOOO fast!!! This was the funnest part of the day by far!!! Long story short, we got a rental car for a couple of days until ours can be fixed. After that, we went back to the house and all pigged out on pizza. Except for me; I don't care much for pizza. Too messy. Now, we are back in the trailer, getting ready for bed. It was another long day, but overall, better than yesterday. Stay tuned..more to follow!!

1 Week of Enzymes

They seem to be helping! Along with the rice milk. Today was the first day that I can remember that Nick had solid poo all day long. He is also not pooping as much as he was before. He was pooping sometimes four times a day; somedays he had a poop in every diaper. Mike is even convinced that enzymes seem to be helping him. Nick has also tried some new foods this week. He has now added ham and hot dogs to his growing list. Feeding himself is still a challenge that we are working on, but he has made progress in that area as well. Talking is more or less on his own terms. We have heard him say things like "oopsie" when he drops things, and he sings a new song now. It is a different version of the "clean up" song...Nick will sing "Line up, Line up". Today he did that while arranging drink cannisters in a square pattern on the coffee table. He has also taken a renewed interest in his fridge magnet ABC toy. "BEEEEE!" he will shout as he puts in the letter B and the song starts.

We are all excited about our upcoming vacation. We are going to visit our friends in Spokane beginning July 1st and will be doing lots of fun summer activities. One of those will be a trip to Silverwood theme park. We are all looking forward to some fun time together as a family. Doing "normal" family things.

Day #2 of Enzymes

Yesterday I went once again to Super Supplements to see what they had for kids. I was looking for something to aid in digestion. Something HAS to give with Nick's mushy poo. He has had problems with poo for as long as I can remember. It is never consistent-he normally goes numerous times a day, and one of those might be solid-the rest are mush. Not to mention he had started doing his little "humping" of the floor again. The Gastro tells me it is "normal", but I don't think so. Call me crazy...but you can't tell me that pooping mush daily is "normal". So, I am on the search to find things that can help ease our tummy troubles. I found KIDS DIGEST in a powder form. It is supposed to help enhance digestion and absorbtion-just what we need over here! He gets one little scoop full(and the scoop IS little) mixed in with juice once a day. So far, so good. He seems to be tolerating it well, and drinks all of his juice. I am just looking for something to help my poor bubby's tummy!

Hi there!

Mommy has not had a chance to update in a while. I have been doing all kinds of stuff too! Daddy and I invented our own little game and we just love to play!! We chase each other and he pats me on my behind and says "Butt!". Sometimes we even get my big bro in on it. One day last week while mommy was at work; daddy came up to me and said "Hi Nick!" and I called right back at him "Hi Butt!". Mommy says I am getting a sense of humor on me; but honestly he DOES say "Butt" all the time-so that must be his name??

I am also learning to feed myself. It is kind of tricky, but I think I am getting it. It is hard because I get so excited about learning a new skill that I tend to "Tense up" and then do lots of flapping. That's ok though, cause Mommy and Daddy (AKA BUTT) taught me a new phrase to tell myself when I get like this. I say "Hands Down" to my hands. 'Cause when they get to flapping, they have a mind of their own!

Last Thursday night my brother decided that he would get sick. It was pretty "hairy" here for a while. He was saying that his chest hurt when he breathed, and he had a headache and cough. Mommy thought she might have to take him to the hospital, but after a little medicine and some rest; he was feeling much better. I think he ate something at school that bugged his tummy. I felt bad for him-he was feeling so ill that he could not even play with me! He just layed on the couch the whole evening until he went to bed! He is feeling MUCH better now though! Well, I am gonna go for now-I just turned on the ceiling fan and I simply love to watch that spin! Have a great day everyone!!

Petition to Fire Ms. Portillo!

Okay all you out there in blogland, time to make a difference! Here is an online petition to FIRE that awful teacher in Florida from my previous post! Let's keep this going...
Just click on the word "FIRE"

Perfection...

It was around 7pm and Nick had fallen asleep on the floor under the ceiling fan. This is his most favorite place to be. He relaxes himself while watching the hypnotic spinning of the fan. He is at total peace with himself and the world. He often falls asleep under the fan in this manner. I went over to him and layed down next to his sleeping body. I took his "Nicholasness" all in. His long curly eyelashes, his button nose, his fine blonde hair, and his smell. His oh so sweet smell. Most four year olds have lost that "baby" smell-but Nick still has it. I lay beside him and kiss him gently on the forehead and on his cheek. He is simply PERFECT.

Sweet Alex Barton; the Five year old who was voted out of his class by his hideous teacher, you are PERFECT just the way you are! You have so many people who will stand with you and your family! The whole WORLD is in your corner little man!

Beyond Words...

I don't know if any of you out there in blogland have heard of this story yet, but it is simply disgusting and a prime example of ignorance. A teacher in FLORIDA had a 5yr old boy who is in the process of being diagnosed with high functioning autism (HFA or Asperger's Syndrome), stand in his classroom and be "voted out" by his classmates! FIVE YEARS OLD!! Read on in the article and you will hear how most people view kids like Nick. They are viewed as "disgusting", "disruptive", "violent", the list goes on. This is what we have to deal with. This is an outrage! It is 2008 people..why are these children being taught how to "hate" anyone who is different? This little boy has been traumatized in a way that NO FIVE YEAR old should! Autism is not "Disgusting". I cannot type right now...I am too furious and heartbroken.

It's Potty TIME!

It's me Nick here! Just wanted to give a shout out to all the mommies in blogland-"Happy Mother's Day". Us kids would be nowhere without the mommies. So, all you kids and babies out there, give your mommies some kisses! I don't know about your mommies, but my mommy is just a gem. I am serious when I say that the woman does it all. She is so busy with my daddy,brother, and I that she hardly has any time to spin or twirl anything! That's just so much fun to do!! I think she should also just take time to watch the microwave-all those numbers, not to mention it spins on the inside. Pure satisfaction if you ask me. I ALWAYS have time to watch the microwave!!

See? Anyway, this same wonderful mommy is planning to ambush me tomorrow! She is planning an all-out war on my beloved dipeys(a.k.a. Diapers for all you grown folks) This CAN'T be!! She is wanting to get rid of these things and get me to wear UNDERWEAR!! BLECH! My brother wears these, and I must say, I think they are boring! I am so going against the grain on this one. I let her win the food battle, but that is where I draw the line! But then again, all the food tastes so good..especially cake! You all have got to try that one...you won't regret it! It's kinda weird, but it tastes soooo good! Maybe I will give this underwear thing a try; but that does not mean I have to like it! Well, I better get going before mommy catches me on her computer. Then I will really be in trouble!

In the Trenches with Potty Training...

We had an appointment with the psychologist yesterday morning to discuss potty training Nick. To put it simply: It is not going to be easy. We are prepared to start intensively this weekend. She advised us to "set-up camp" outside the bathroom. Section off that part of the house, and put some toys, and a naked Nick as well as each of us from the time he wakes up; til the time he goes to bed. We purchased some strong reinforcers from Target. Since he does not care too much about any type of sweet rewards, we went for the material ones! We have started him already on a potty schedule. We have the schedule posted on the wall outside the bathroom and write down every time he sits on the potty and every time he goes. It is not going to be pretty this weekend; but if we get it done, that is one more major hurdle we have crossed. He is doing good on his supplements. Yesterday he came out of his room and said "Hi" to daddy as he passed by him. Today before he left for school he replied "I love you too" when Mike said "I love you!" He did not care for the vitamin supplements in his milk, so I have switched to putting them in his juice. That seems to be fine with him, and he drinks it right up. Other than that,not too much else to report. I have posted a video of Nick doing what he does best. He LOVES to spin our phones. If it ever becomes an Olympic event, he should take the Gold medal!

Pleasantville

No, we did not move! But that is where we have seemingly resided with Nicholas the last few days. The last few days have brought some amazing results.

Monday: He had his ABA therapy at UW. We have been working since last summer to get Nick to imitate on a regular basis throughout sessions. He NEVER did it. I mean, he would do it once or maybe twice, but that was it. Monday, I kid you not, he did EVERYTHING she did..with very little prompting, in fact, it was almost none at all. She said the session was a huge success!

Tuesday: I can't count how many times he came to me and said "I want cup"; he is very good at that now. Did I mention he looked at me every time I called his name and stopped spinning objects?

Today: Another huge success. He went with me to get my haircut. Now, I dread taking him on these appts. because he has nortoriously hated the hair salons. This time however, he thought it was hilarious. He was looking at everyone around him, smiling at himself in the mirror, laughing at me when my hair was funny looking. Michael is having to constantly say "Nick! Get out of_____, or Leave _____ alone!" This morning, every time MIchael was out of his sight, he cried. Mike found them this morning sitting in their room together. He asked why Michael had not come out, and Michael said "Every time I left, Nick cried. So I stayed here."

We know that he will always be autistic-that much we accept. We are not trying to "cure" him. We just want him to get better sleep, and be healthier. If that makes him function a little better, then it is a plus.

Sunday Ramblings

Some things are just better lined up.
I have changed up the blog a little bit. I thought it was time for something new. Well, it is going on Day 3 of Melatonin, and all I can say is, WOW! Nick has slept two nights in a row!! HOORAY! We started him back on 1Tsp. of Cod Liver Oil as well. He is doing much better. Today Mike was playing around with a thing of breath freshner and wanted to show Nick how he could get it to spin on his fingers. Nick saw it and suddenly said "BAM!". We were a bit confused until I noticed that Mike's hand was in the shape of a gun. I have no idea of where he could have seen or heard a gun before, (maybe from Michael and his friends playing), but something connected with him and he put it together.
He has also been coming up to me a lot more and saying "I want cup". I mean, not even stopping to think about what to say..just saying it so easily. Not just saying it, but looking right at me when he says this! Michael has even said "Nick is so much HAPPIER now!" Amazing what real sleep will do!

2:41 a.m.

And Nick is still asleep. So far, so good.

In our quest to find natural ways to help Nick, we came across this:

It is basically vitamins. Click here for the link. For those who do not know, ASD stands for Autism Spectrum Disorder. I don't know if it will help him or not, but it is worth a try. The paragraphs below summarize the product.
Many children with Autism Spectrum Disorders (ASD) have multiple vitamin and mineral deficiencies. Our ASD Vitamin/Mineral Powder is specifically formulated to help counteract these deficiencies.

Several other companies also offer vitamin and mineral supplements. However, these supplements have many disadvantages. Some of these supplements are sold in a liquid dosage form. The problem with liquid supplements is that many vitamins and minerals are not stable in a liquid for more than a couple of hours or days. As a consequence, the patient may not receive the correct therapeutic levels from a liquid supplement. Also, to keep costs down, most supplements are made from inexpensive forms of the vitamins and minerals. In many people, these inexpensive forms are poorly absorbed and some can encourage yeast overgrowth.

Another problem is that many supplements are designed for the general population. These supplements do not fully meet the unique nutritional needs of a patient with Autism Spectrum Disorder. Lastly, and perhaps most importantly, none of the supplements we have tried taste very good. As most every parent of a child with ASD knows, it is not easy to get a child to take a bad tasting supplement. When we set out to formulate our ASD Vitamin/Mineral PowderT, we made sure to avoid all of these common problems.

Because Lee Silsby's ASD Vitamin/Mineral PowderT is added to a liquid immediately before serving, the vitamins and minerals have no chance to degrade. In addition, we use only the best forms of the vitamins and minerals available, and our formulation was designed in conjunction with several DAN! practitioners specifically to meet the needs of the ASD patient.

Lastly, through more than a decade of flavoring children's medications, we have developed the ability to make almost any medication palatable. Our expertise in flavoring medications insures that our ASD Vitamin/Mineral PowderT tastes great. It is available in citrus flavor or unflavored to meet the requirements of the Specific Carbohydrate Diet. Our formulation is free of gluten, casein, soy, sugar, artificial flavors, artificial dyes, and preservatives.




Each dose of ASD Vitamin/Mineral Powder™ contains:Click here to hide ingredients...

Chromium (as Chromium Aspartate) 200mcg elemental Chromium
Selenium (as L-selenomethionine) 200mcg elemental Selenium
Molybdenum (as Molybdenum Glycinate) 150mcg elemental Molybdenum
Zinc (as Zinc Amino Acid Chelate) 30mg elemental Zinc
Magnesium (as Magnesium Glycinate) 100mg elemental Magnesium
Calcium (as Calcium Citrate) 420mg elemental Calcium
Vitamin B-1 (as Thiamine HCl) 10mg
Vitamin B-2 (as Riboflavin-5-Phosphate) 15mg
Niacin (as Niacinamide) 40mg
Vitamin B-6 (as Pyridoxal-5-Phosphate) 25mg
Biotin 150mcg
Pantothenic Acid (as Calcium Pantothenate) 100mg
Folinic Acid 800mcg
Vitamin A (as Vitamin A Acetate) 5000 IU
Vitamin C (as Sodium Ascorbate) 500mg
Vitamin D 200 IU
Vitamin E (as Vitamin E Succinate, natural) 200 IU

We got a call from the psychologist today, and we have an appt. set up for Friday at 9am. We got his stool sample results. Everything was normal.

Melatonin

Today I took Nick back to see Dr F. We had a lengthy discussion on how Nick is progressing. The words "Classic Autism" were thrown into the conversation. Basically it means that if Dr. Leo Kanner himself had seen Nick back in the 1940's; he would have diagnosed him with autism. Classic Autism is on the severe end of the spectrum, and comes with such things as Mental Retardation. I, for one, do NOT think Nick is mentally retarded. We will not give up on therapies of any sort. We will NOT give up on Nicholas. He wants to be seen and heard. I knew in the back of my mind that he fit more of the classic autism than anything else, but just hearing a doctor say it was very different. But, Doctors don't know everything. The brain is still very much a mystery, and autism is even more of a mystery. They don't know our Nick!

That being said; we did have some issues that need to be resolved. We started Nick on Melatonin tonight. Melatonin is a natural hormone produced by the body to regulate sleep cycles. Kids with autism often do not produce enough of this hormone; and that leads to erratic sleep. Nick would spend sometimes 2 hours in bed stimming off toys, light switches(we had to unscrew all the light bulbs in their room-he figured out the switch cover and would constantly turn the lights off and on)or anything else he could find. Then, once he did fall asleep, he would not stay asleep. You can imagine how much a sleep deprived brain could function-not very well. It affects the short-term memory; so he is essentially having to re-learn everything from day to day. We are hoping the Melatonin makes recouperative sleep a possibility for Nick. This has been going on for a while, and we decided it was time to pursue options. We started him on 1mg tonight, and Dr F said we could go up to 6mg if needed. Wish us luck! Wish us SLEEP!!

Another thing we did was give Dr F a stool sample. NIck is still plagued about 1-2 times a week with mushy poo's. We want to make sure he is not having troubles digesting his food. We should know the results in a week or so. We also put in a referral for a visit with a psychologist. They are supposedly going to help us potty-train Nick. We shall see! It would be wonderful if he were to be out of diapers by summer!

Other than that; not much else is going on. I am also starting him back on Cod Liver Oil. Fish oils are very good for the brain-so we hope to see ANY improvement.

Word Full Wednesday

I am sitting here absolutely stunned at my four year old. He spends much of his days barely uttering a couple of sentences at most, and we spend much of the day trying to get him to talk. It is always a question of just how much information is making its way in, as he has a hard time getting it out (I hope that makes sense??) So, it is always a nice surprise to hear words coming from his mouth.

He is sitting here playing with his Fridge magnet toy and repeating every word it says. Then, he came up gleefully shouting "Cuppiieee, Cuppppieee, CUP! I want cup!" I think it is going to be a good day today!!

Nick TV

Make video montages at www.OneTrueMedia.com

Frustrated....very frustrated....

A couple of days ago I called Nicks' doctor to see if we could get a referral for a doctor in Portland to treat Nick. This Doctor came highly recommended by another mom and we were starting to get excited about doing some new treatments with Nick. We were going to do some of the biomed stuff. We just wanted to see if Nick would improve. We were not looking for some "miracle cure", but just improvement. Well, his Doctor just called me back this morning saying they would not cover anything like what we were looking for. They will cover the basic therapies like OT,ST, and ABA (which he is getting), but that's it. WE will have to cover anything outside of that. Just an initial visit to this Dr would cost $800. Excuse me while I bang my own head against a wall...

HAPPY EASTER!!

Nick here!!! Sorry we have not updated in a while; but mommy has been super busy. She started at a new shop and they have been changing her schedule all around. She never knows when she goes to work one day whether her schedule will change the next. I really like the one she is on now though. She can get me and my brother off to school every morning, and pick us up. She also gets to take me to all my therapies--which both of us really love. Her lunch time is right around our bed time; so she comes home and says "goodnight" to us as well! During her off-time(which there is not much of as you all know) she is going to school, trying to see if I can go to Little Gym(she says it would be good for me),taking me to UW and Speech, and doing stuff together at home too! Whew...boy am I tired just from thinking of all that! I did some new things this week: I identified spoon,bus,and ball on my flashcards. I am learning animal sounds(I like to MOO like a cow, and oink like a pig) and I really like shapes. I surprised everyone at UW by blurting out "triangle" when I saw one!

We are having a quiet Easter at home; which is just what I like. Too much noise makes me crazy. I got a book and a stuffed ducky in my basket. I might even try some of this stuff that they call chocolate. I don't know about that stuff; but I really like the plastic,purple colored wrapper my brother's basket came in!

Autism video

Does This Look Like "suffering"?

People read articles and watch TV shows where they always tell you that the individual "suffers" from autism. Yes, most people who are not on the spectrum or somehow involved otherwise, would say that this wording is appropriate. But let us reconsider what we think of in terms of "suffering" here. I realize that many individuals in the past and present DO suffer-but is it from their hands or the hands of others? Those institutionalized in years past would clearly fit the description of "suffering", but what would their lives have been like had they had the proper intervention and kept at home? That is not the face of autism today my friends. The word "suffering" is attached to autism not by auties themselves; but by us so called "neuro-typicals". We cannot fathom being happy or complete any other way-just the way most autistic people cannot fathom being any different. When I look at Nick, I do not see someone who is "suffering". Some might say "Well, he can't talk-so how do you know?" No, he CAN talk-just not always verbally. Look at his smile; he can laugh-and does so quite a bit. When he has fun-he jibber jabbers non stop in his happy tone of voice. For the most part Nick is like any other 4 yr old- He loves playing games like chase and peek-a-boo He likes waffles and yogurt He likes applejuice-and will even tell you "I want juice" He loves bathtime He runs the other way when it is time for bed He likes going to the park He loves-yes, he is autistic AND shows affection. He lives in a home where he is loved, he is happy, healthy, and is very much a treasured member of our family. So please, save the word "Suffering" for those who are truly doing so. Nick, as well as most people on the spectrum, do not think they are "Suffering" in any way.

Weger Look-alike Meter

MyHeritage: Look-alike Meter - Geneology - Pedigree

Weger Look-alike Meter

MyHeritage: Look-alike Meter - Geneology - Family search

Party Time!!

I ended up staying up until midnight on Saturday getting everything ready for the party. I baked the cake and let it sit overnight before I decorated it. It came out pretty good I think. So good in fact, that Nick actually ATE some of it! That was a very exciting moment-I think the last time he ate cake was at his second birthday. The only time he got a little fussy was when it was time to gather up all the kids to sing happy birthday to him. The noise level was too much, but he got through it and had some fun. Here are some pics:

The cake

The party room

Not too sure about this whole singing thing...

TOO LOUD! And did I mention there is a strange round thing in front of me??!

Hey, this cake stuff actually tastes pretty good!

I think I like this Birthday Thing!

Today I went through Nick's therapy room and got rid of some stuff. I organized it again(it had kind of gone amuck with things put in all kinds of places) and made room for the new items. Nick managed to dismantle the closet doors so they are laying beside the closet now. I am trying to air out the house as well due to it being 50 degrees outside and it was stuffy in here from months of cold and rain. The problem is that Nick really loves windows and screens(he has punched two screens out almost completely) so I have to really watch him when the windows are open. Michael is out playing with his two friends, and I am just listening to the TV right now. Not too much going on. Just relaxing after the weekend.

A Party for Nicholas

We are having Nick's 4th birthday party tomorrow. Birthdays are bitter sweet for Nick. We are amazed at how far he has come along in the last year-he has accomplished 90% of his goals on his IEP, we have begun potty training, and he has started eating more table foods. These simple milestones however remind us of how far he still has to go. I went shopping today to get decorations and presents. We are having a few kids over, a couple of whom are Nick's age or close to it. Nick still does not get birthdays quite yet. I keep his parties small so that he does not get too overwhelmed-but it will probably happen anyway. It is hard buying for Nick. At least, buying for him when I know everyone will see what he gets. The toys he likes are made for infants. I would have bought him all the light up toys I could; but I am conscious of what others might think, even though they know he is autistic. So, I wandered through the aisles and carefully chose things that a normal kid would get, and things we could use to work with Nick. Mr Potato Head's Vegetable Buddies, a game where you have to stack plastic food to make a sandwich, a tub finger painting set, and for pure fun, a Bouncing Tigger. It is not often that we have "outsiders" in our little world. Our house looks like a war zone with the dents and gaping holes in the walls, we have latches on the closets to prevent Nick from obsessively opening/shutting them, the light bulbs in their room have been unscrewed and there is a switch cover on the switch. All these things help us to lead as normal a family life as possible. People just really have no idea of what goes on behind the scenes at casa de Weger.

We are doing the party in a Shrek theme. Oddly enough, Shrek is the one character that Nick actually liked when we went to Universal Studios. Nick had a Shrek doll that talked when he was smaller, and he always smiled when the phrase "Eat,Stink, and be scary" came up. He LOVED Shrek. Since I could not find a Shrek cake, I am going to attempt to make one myself. I bought a normal yellow cake and white frosting and I am going to try and draw Shrek's face on the cake. I will post a picture of how it comes out. Wish me Luck!!

OT Appt and other stuff

Today we had Nick's Occupational Therapy evaluation. He performed rather well, and she got to see a lot of the things that Nick does. He colored with a crayon; which is a big improvement, completed a puzzle, and put some blocks on a string. (Although he also had to have the string STRAIGHT on the table, and liked spinning the little blocks) Then we went into another room and the abrupt change in schedule made him very fussy for a minute; but was easily coaxed out of the room. He REALLY liked the swing they had hanging from the ceiling. He got on that and completed another puzzle while swinging. She would do "1..2..3..Go!" with the pieces as he swung by her and drop them on the swing for him to reach. Nick really took a liking to her-she was very animated, and he responds very well to that. We should find out soon when he will start OT there.

Nick has had some ups and downs this week. Items that are now on his list of "good to eat" are:
Toast, Veggie Dip Puffs, mashed potatoes, and various kinds of cereal. We are not doing so much of the Gluten Free diet anymore. His digestion problems have seemingly gone away. We still do not give him milk though.

That is the "up" side. The "down" side has been his sleep again. He is going through another period of waking up at night..or should I say; early morning. He has figured out how to open his door even through the child locks. I found him in the hallway again this weekend at 3am with all the lights on. He has not been falling asleep until 10pm most nights this week. We have resorted to putting the baby gate up in the doorway to prevent him from getting out when we are all sleeping. No rest for the weary!

A Breakthrough week!!

Everyone is finally over all the colds, and we have had some wonderful progress with Nick. Wait, it is not just progress, it was a BREAKTHROUGH! After 3 weeks of touching, mashing, and getting the cereal closer to his mouth, we were overjoyed to catch this on video



He also learned to drink through a straw in therapy and has been doing that well now for a couple of weeks. Today was the first time I actually went out and bought cereal for Michael AND Nick. I also bought Nick some juice boxes so he can get more practice with a straw. We got a call from Mary Bridge Hospital where he will have his Occupational therapy. We have an evaluation with them on Feb 6th. We are also thinking of getting him back on their Speech therapy list. I took him off of it when he was accepted at the center he goes to now. Well, he seems bored with the current therapist, and spends most of the time just sitting there looking into space while she sings songs. I have been trying to find time to work with him a bit, and we have had lots of fun using the toys he got for Christmas. He has taken a huge interest in Michael. He will sit by him, lay next to him on the couch, watch tv with him, etc. It is nice to see Nick initiating some play with Michael as well. All in all, we are doing well. We hope to meet up with our friends from Spokane tomorrow and skate with them for a little bit. It has been a busy weekend.

Time for an update!!

Nick and I spent the first part of 2008 with a nasty cold. Of course, these illnesses always seem to set us back a few days with him and it takes him quite a while to feel like himself again. I am happy to say that we used more Motrin than Tylenol this time and avoided the chaos that happened with his last cold. He is just now starting to eat again, and with him feeling bad we put a halt to the home programs we had started. He just felt too badly to do anything but sleep..as you can see from the pic.

Now that things have settled down both at home and at work,I am getting his programs back on track again. One thing we have a a little success with is getting him to pee on the potty. He will now sit readily on his little potty while I am getting his bath ready. The whole time he is sitting there I reinterate what he is supposed to do..."Time to go pee-pee on the potty", or "Sit and go pee-pee on the potty". He has done it three times so far and we could not be happier. We continue with this, and hopefully will get him out of diapers by the time he is five.

Another thing we are working on with him is imitation. Kids with autism have to be taught how to do this, and when you think about it, imitation is how kids learn. Today I put a plastic giraffe on the table and moved it with my hand. After each time I said "You do it". It took a few times of prompting him, but after that he was doing it all on his own. We also played with our food, Mr. Potato Head, and clapped.
I keep track of everything in a notebook, and write down all our goals and when they have been mastered. Nick has also started to sit with Michael and watch TV with him. I need to structure and tweek our home program just a bit and come up with all kinds of things to work with him on. It is an ongoing process. Nick is such a joy, and his unusual way of thinking comes out in so many funny ways. This morning he noticed that Michael was not here, and began to sing "Go get Michael...go get Michael". He loves coming up behind Michael and squeezing him..almost like a hug. Here is what is going on in our living room right now:


I always love it when they act like normal brothers. So much of our lives is abnormal, but we do get a little glimpse every now and then.

Happy New Year!

We have started 2008 a little under the weather. I went to get Michael up this morning for school, and Nick was awake. Great. He needs to get ready for therapy anyway. I bent over and stroked his head. He was burning up. He had been congested a little bit in the morning yesterday but nothing out of the norm. Today, he was running a fever(102 after tylenol)and was pretty lethargic. He did not even want anything to eat-all he wanted to do was go to bed. Michael really wanted to ride his bike to school, but it was raining out and in the 30's so I told him "No way, I am taking you". He was a little miffed, but got over it.

Now, on to Nick. He slept for most of the morning. We did take him to his Speech therapy, and although he did not perform up to par(mostly just sat there), it gave me a chance to have a good conversation with his therapist regarding his eating. We have to start all over from scratch. This means going back to infant days. Nick has to learn to play with his food. Normal developing kids do this by mouthing anything they can put in their mouths. Nick never did that. The only thing I remember going into his mouth were his hands-he never put anything from the floor in his mouth, or explored textures in this manner. He has trouble touching anything that is mushy or slimy...we have to force him to touch food on his tray. It is going to be a slow process. We are starting with GF/CF cereal. I have to put a few on his tray, and we go through drills of touching them. Now we are working on picking them up. Eventually, we will get them closer and closer to his mouth. The hands and mouth are somehow connected in this way. He must first explore food with his hands, and we were told that his mouth will naturally be the next step. She said she has treated kids like this for many years, and is now working with a 13 yr old who still has issues with texture. So, this will be a long and tough road. As you can imagine, we not only have to deal with texture issues, but also with a kid who resists changes in his routine. Nick is so sensitive that he cannot see or hear me making any changes to his food-if it so much as smells different, is funny looking, has things dangling from the spoon, if it has a spec of something unfamiliar-he won't eat it. If there is a bowl of something unwanted on the table-he won't eat. I had to hide the food processor from his sight in the high chair because he refused to eat anything and kept staring at it and whining.

I called about his OT today, and they should be getting back with me with another evaluation date. We will be starting our own exercises in the meantime. Mostly putting deep pressure on his hands and getting them used to sensory input. We are also revving up our home program. Lots to accomplish in 2008! Here are some of our goals:
Get Nick eating more tablefoods
Start Potty Training
Identify more body parts
More speaking and requesting what he wants.

We have a lot of work to do!

Christmas Vacation

Both the boys are on their break and it is nice to have them both home. I did the last of the Christmas shopping today and I had some time to myself. Most of the parents there did not even have to think about their kids interacting with them, took it for granted that their toddlers were able to eat food off their plates, and a trip to the bathroom was no effort at all;and possibly even a little annoying. These things are made so difficult for Nick. Not that he seems to mind, but as he is getting older the gap seems to get wider between him and a normal 3yr old.

Lots of good things have happened over the last year though. Big steps forward. He has become more mischeivious-which despite being somewhat irritating at times, is quite a good thing as far as development. His head banging seems to be in a lull for now-which is a godsend. He started his second year in preschool, and seems to be moving right along with the goals that were set at our last IEP meeting. We started him on the GF/CF diet after visiting a nutritionist, a feeding clinic, AND a gastro-all who said there was either "Nothing to worry about" or "He is too severe for us"..regarding his poop and eating issues. The diet has seemed to really help with his poopies, and his SLP gave us ideas on how to introduce foods to him SLOWLY. We bought some gluten free cereal, and I put some in a baggie and smash it with a hammer to break it into bits. I then mixed it with the rice milk and low and behold, he ate some of it!!

We finally got the referral from his Dr for his Occupational therapy. We will start that whole process after the new year. It will mean another evaluation, more paperwork, but hopefully it will go quickly and we can press on with more services for him.

In the meantime; we are enjoying our time off from school and filling or days with playing, shopping, watching Christmas movies, and baking cookies for Santa. We wish everyone a Merry Christmas and a Happy New Year! Hug your little ones and enjoy this time with your families. See you all in 2008!!

Christmas Slideshow

Fantasy Lights

We took the boys to see the Christmas lights they have in Spanaway Park last Sunday. It was just what Nick LOVED. All those blinking, and colorful lights. He simply was in heaven-we could hear squeals and giggles of pure delight coming from the back seat. He was just so happy. He has completely gotten over his cold, and is back to his joyous old self. Including waking up at 3am, turning on the bedroom light and spinning his favorite toy....much to the dismay of his sleepy family. He goes through periods like this where he is up at 3-4am just doing whatever. I have heard tons of out and out laughter coming out of his dark bedroom-which begs the question...who or what is he laughing at?? It seems that this is a world that only Nick inhabits, and us "outsiders" are excluded. All I know is the air must be pretty funny at night. His glorious laughter is simply wonderful-even at 4am.

Nick has also made some progress in his self-help skills. He can now pull up his pants(he still needs help; as he only pulls the front),can pull his shirt over his head to get it off or on, and Mike has even taught him to open the fridge and get his milk out upon request. We are still in search for a home therapist, but we have a couple of leads that sound promising. His Dr also called me back today saying he put in a referral for an Occupational therapist. This will help Nick with his toe-walking,ear flicking, and all the other "inappropriate" stims he does. He is going to the speech clinic in University Place now every Wed. His schedule is pretty packed on his "day off" from pre-school. He has to be at UW for ABA therapy at 8:30am, that lasts one hour, after that, it is off to speech therapy for another 30min; by that time, it is almost time to pick up Michael from school. I have no idea of where we will fit in the OT, but we will. Other than that, not much else is going on. Here are some photos from last weekend.

Thanksgiving update

Our whole house has been sick with a cold for the last week, and poor Nick was just miserable. He missed school all of last week, and missed his Wednesday therapy. We do have some good news to share though. He will be starting speech therapy on the
28th. That will also be on Wednesdays after his UW sessions. We also have a tentative interview/meeting with a therapist who comes to our house set up for Sunday. I have been on the phone with a couple people this week regarding getting this therapy paid for by Uncle Sam. It is through the respite care program and a couple other branches are willing to pay for 40 hours a month. But, the one that I am in will only pay for 20 hours a month, and will only cover up to $10 an hour. So, it will more or less fall on us to cover the majority of the private therapy. I left a message with Nick's doctor on Tuesday, but I have not heard from him yet. No surprise there.

Other than that, nothing new to report. He really has been just battling this darned cold all week. His sleep has been all jacked up, and so has his eating. He is getting back to normal-but it takes him time.

Progress Report is in....

Today we got a report on Nick's progress with his I.E.P. in preschool. I will explain the "grading":

A 1 means: Not applicable
A 2 means: No progress made
A 3 means: Little progress made
A 4 means: Progress made;goal not yet achieved
A 5 means: Do not anticipate meeting this goal
A 6 means: Goal met

Here is his progress report from the school:

1. Nicholas will experiment with cause and effect when playing with 80% success for 2 consecutive data days. (4) (stayed same since last year)
2. Nicholas will independently nest four containers, or stack rings or blocks of graduated sizes with 100% success for 2 consecutive data days. (6-Goal met) (up from 4 last year)
3. Nicholas will demonstrate appropriate use of toys that have different properties on 3/4 opportunities w/ no more than 2 prompts. (4-same as last year; but he is interacting more as opposed to spinning)
4. Nicholas will shift attention from one object or activity to another with a)no more than 2 prompts by Oct 07 b) with 0-1 prompt by Feb 08. (6-Goal met)
5. Nicholas will play comfortably and appropriately in a small group with minimal prompts at 80% success for 2 consecutive data days. (6-Goal met. Up from a 4 last year)
6. Nicholas will follow classroom routine with no more than 2 adult prompts at 80% success for 2 consecutive data days. (4..same as last year; but more active this year)
7. Nicholas will indicate his wants and needs through gestures,signs,pictures,or verbal response on 3/4 opportunities with no more than 2 prompts (3...up from 2 last year)
8. Nicholas will express appropriate affection for peers and /or adults with no more than 2 prompts at 80% success for 2 consecutive data days. (4..smiles and laughs! Up from a 3 last year)
9. Nicholas will respond appropriately to social contact made by familiar adults with no more than 2 prompts at 100% success for 2 consecutive data days. (4..responding to name!)
10. Nicholas will appropriately express various positive and negative feelings with minimal prompts at an 80% success for 2 consecutive data days. (3...up from a 2 last year)
11. Nicholas will sit during circle time, small group time or other appropriate times for a minimum of 5 minutes or until the activity is completed; wait to be excused or ask appropriately to leave the activity with 80% success for 2 consecutive data days. (6-goal met)
12. Nicholas will choose a desired toy/activity using pictures,signs,or verbal request from a field of 4. (4+ on that)
13. Nicholas will imitate mouth movements/vocalizations/words by Feb 08. (4+)
14. Nicholas will identify an object/picture from a field of 3 by Feb 08. (4+)

Overall, he is doing far better than last year. On another note, our in-home therapist is not able to drive to our house-so we were back to square 1 by Monday. I asked someone in our autism group if they knew of anyone; and I got the names of three people. I will call them this weekend and set up a time for interview. This expense will be out of our own pocket-as our insurance does not cover private sessions. It will be roughly $25 an hour (4 hrs a week in home; or $400 a month). Mike and I discussed in length our finances to cover this. There is no way we can do without this therapy. Nick is making so much progress with the therapy and diet, I truly believe he will be high functioning-but he can't get there without help. We have cut down our cable to $50 a month, and doing some strict grocery shopping, and basically doing without anything we don't NEED. It's for Nick. We talked for more than an hour about all this. Mike has rarely spoken of "God", but he did this week. He said that God has a plan. We don't know what yet, but he does have a plan. It was kind of nice to hear those words come from him for a change. Usually it is me saying that.

As for Nick; that kid has an amazing memory. It might even be a photographic one. We can put a toy up, go out of the house for a few hours, and as soon as we get in he is making a bee-line for the toy. He remembers where it should be, and if it was moved while he was gone, he will look under every nook and cranny, and then take us to all the places he knows we hide things. I came home yesterday and found that he had placed his toys in an oval pattern on the floor of the "therapy" room. Blocks were in a line,things were stood up, and some things managed to get "clumped". (I.E. groups of 3 plastic fish)One of his teachers greeted him by patting him on the back the other day...Nick replied "No Hitting" to her. He has informed me on two occasions that he was "all done" eating. Our boy is starting to speak his mind...and what an interesting mind it is!

New Slide Show

Nick's World

I was able to get some video of him this morning doing some of the things that he does. The first video captures his "machine" voice. He will do this with just about anything, but mostly body parts (i.e. his arm), and geometric shaped objects like the picture frame he has.

In the second video you see him spinning one of his favorite toys. He also incorporated the picture frame in this sort of "play". It seems that he is looking at the reflection cast by the spinning toy in the picture frame. The round object on the table is a mint case that he has peeled off the stickers.

Some of his ramblings make words. As you can hear in the third video, he says what sounds like "Got milk". Another obsession he has started lately is the need to carry around a towel,blanket, or any other item of clothing. He also likes to stand things up.

Good News!!

Nick has made very good progress with requesting things this week! His therapist at UW is amazed at all he is doing! He can now follow one-step commands like "clean-up", "sit-down", "get down" etc. All of this has taken LOTS of practice; but he is now getting it. We work with him every day on simple things like greeting people (saying HI, BYE, Good Night,etc), and making him request things like Cup, cracker,etc. Things are connecting. Today I picked up some BK because I had school tonight and did not feel like cooking. Nick stood beside me and acted like he wanted a french fry. I gave him one (I know, a big No-No while GF/CF-but he did not eat it anyway) and said "french fry". He took it, smelled it, rolled it on his face, got it to the lips, then was done. Well, he came up to me, looked at me, and said "french fry". I was so happy and shocked that I gave him another one and lots of praise! We have also practiced a bed time routine of saying "Good night" before going to bed. I told him one night "Nick, go say goodnight to daddy". He went down the hallway, found daddy in the living room on the couch and stood beside him. He needed a little prompting with speaking, but he did it! He now says "Good night, I love you" on his own.

We also found a therapist to work with him at home. She was recommended by our therapist at UW. She has worked with many autistic kids and she was looking for more hours, so she asked our therapist if she knew of anyone. Well, 'C' e-mailed me today at work asking if we were interested. OF COURSE! She will be coming Tuesdays and Thursdays from 11am-1pm. I still have not recieved the report from the speech clinic, so I am not sure of how much he will get there; but I am just glad that things seem to be falling into place. We have had a good week over here. Ending with a couple of pictures of Nick just being himself.



He loves to watch things spin in the microwave :)
Also a current obsession with him is to carry around a blanket,towel,or sheet wherever he goes. This is his favorite sheet in the pics.

My Little Ducky

This Halloween was the best yet with Nick. He still does not get the idea of getting candy(much less EATING the candy) by going house to house dressed up in a silly costume, but he lets us do it every year. This year he walked the entire way instead of being strapped in his stroller, and I even took him up to a few houses so that he can participate. I tried to get him to say "Trick or treat", but all he could muster was a stare and a quiet "Tank U" (thank you) after some prompting. One house had a fog machine and lots of decorations outside. Nick stood at the edge of the sidewalk and exclaimed "WOW". He was a little hesitant to go through the fog, but he did it. It will be a while before he grasps the whole concept, but we are making baby steps.

Nick has been completely CF (no milk or dairy products) for a little over a week now, and he is adjusting very well to the rice milk. Thursday his school decided to give him regular milk despite me providing a thermos with his milk in his back pack every day. He had very bad diarrhea three times after that. I will have to write another note to his teacher directing them not to give him milk. We have noticed some good changes in Nick since starting the diet. Last night he did something he has NEVER done before. He went up to a kid with a flash light and said "My turn". He did this about 3-4 times and just kept following the poor boy. We were so happy that he actually initiated contact with another person; that it was all Mike and I could talk about after the boys left!

Friday we had an evaluation done on his speech through a local speech and hearing clinic. Nick was completing puzzles and playing with the toys and generally having fun. He would repeat words that the therapist said, and when putting puzzles together he would exclaim to himself "Good Job!". At one point he was so eager to respond with something; but just did not know exactly what to say; so he said "Goodnight, I love you" to the therapist!! He made great eye contact with her a few times while we were there and even touched her face. We should hear from them soon regarding how many hours he will get there. The clinic also works on food texture problems as well. I am so excited that we are finally going to recieve help for this!! We have been to a few doctors who said that he was beyond their services to help!! He WILL eat table food. Eventually.

GF/CF

This is the diet that we are now trying with Nick. It is Gluten Free/Casein Free, and a lot of autie kids are on it. One reason might be that gluten and casein are responsible for improperly broken-down dietary peptides-part of the opiod theory of autism-or that the immune system dysregulation causes an abnormal immune response, whereby the body reacts to these and attacks itself. So, we are going to give this a try. In the past week or so, we have noticed a slight improvement with him. Nick is more verbal. One thing that we have Nick on is Cod Liver Oil (CLO). Some research shows that CLO has a positive effect in raising attention levels.

We are just trying these right now. If it goes well(which it has so far) then we will look into making it more permanent. We have seen some changes in him and that is what keeps us going. He is initiating more contact with us, using more words, and has had fewer tantrums.

I just want my little man to feel better. If this helps, then that is great. I am not searching for a "magical cure" for his autism. In a lot of ways, his autism is beautiful. The way he goes about singing, humming, and his gentle personality are all a part of who he is. He is simply Nick.