Busy Schedule

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

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

Home Sweet Home!

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

Jack Black scores BIG with me!!

Almost home....

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

Shop at Wal-Mart!

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

Time For Change!

Thought the old blog could use a face lift!

Babysteps....

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

Score one for Daddy!!!

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

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

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

Stupid School System!!

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

They were SOOOOO Little!!!

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

Big Brother

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

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

Yoko????

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

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

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

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

How do You Handle that Awkward Silence....

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

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

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

Happy Easter!

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

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

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

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

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

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

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

He's IN!!

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

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

Rainman....

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

My Amazing Nick!

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

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

Busy Days....

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

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

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