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!