How do You Handle that Awkward Silence....

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

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

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

Happy Easter!

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

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

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

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

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

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

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

He's IN!!

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

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

Rainman....

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

My Amazing Nick!

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

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

Busy Days....

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

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

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

Being "Nooooonie"

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

Birthday Pics....

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

Behold The Power of the Wand!


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

WooHoo!!!

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

Birthday Party Re-cap

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

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

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

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

Busy Day!!

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

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

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

The Results are in.....

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

Evaluation Day.....

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

Once Bitten......

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

On the verge of a breakthrough?

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

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

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

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

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

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

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

Mischievous Nicholas

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

How Much is Enough?

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

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

Word!!

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

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

A Bit of Comfort...

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

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

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

Hakuna Matata!!

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

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

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

The List..

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

The dreaded Cold.....

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

Headbanger's Ball.....

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

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

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

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

Patience.......

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

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

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

Nick's Favorite Toy

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

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

Diaper Dilemma...

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

New Year...New Things A Happenin'

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

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

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

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

HAPPY NEW YEAR!!

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

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

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

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

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


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



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

Little Brother vs. Big Brother

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

Happy Holidays!

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

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

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

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

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

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

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

Looking down our street from the driveway.

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

Deck the Halls.....& our house!

Here are some pics of the house and our tree. I decided to take some before the rest of the lights went out..LOL! We lost one string during yesterdays storm.

Taking the boys to Target; and remembering why I shop online in December!

Today I had to take Michael to Target so that he could pick out a birthday present for his friends' party this evening. Temperatures were hovering in the upper 30's, so it was time to break out the heavy duty coats. We said our goodbyes to daddy; and were off. During the 15 minute ride there Nick manages to take off the brand new shoes that we bought him last week. We have yet to find a pair of shoes that he cannot wrangle out of. Not even the lace-up high tops. They might buy us a few more minutes at most;but they too come off. He has also managed to take off his socks, and his jacket. A regular Houdini this one is! We get to Target, and I spend the first few minutes outside putting clothing back on my four yr old. Today I am very thankful it is not raining!

We walk in and the store is chaos with all the holiday shoppers. I give it 20 minutes before we are on the verge of meltdown. I opted for a carry basket instead of a cart and told Michael to get it for me. Hoping against hope that this was not a decision I would regret. We had barely made it to the toy aisle when things started to fall apart. Michael accidentally hit Nick in the head with the basket; and Nick was wailing.
"He should watch where he is going! It is not my fault!" as I console Nick, who is carrying on like he has lost a limb. "Say you're Sorry!" I tell Michael. "Tell him to watch where he is going!" he retorts back. "Say you are sorry or you are not going to the birthday party!". He forces his lips to say "Sorry". We continue on with our journey-trying to think of what the kid would like. Michael is a few steps ahead, I am back with Nick who is poking at all the bright packages with his pointer finger. In my head at this very second I am thinking this classifies as a "point" of some sort(and no, I don't care what all the experts say right now, after TWO YEARS this is as close to a point as we have gotten; let me have this one.) Nick finds one of his very favorite needle toys-and I have to be the bad guy to say "All done" and take it away. You can imagine what comes next. Total loss of control. Fortunately, through the years, I do not get as flustered as I used to. Afterall, I have endured years worth of countless meltdowns-nothing shocks this momma anymore. After a few minutes, Nick regains composure(maybe realizing the fact that we are not about to leave?) and finds an Elmo doll to comfort him the rest of the way. Fine. Whatever. Works. We find our items, and we are even carrying home some birthday ribbon(don't ask, it was cheaper than the Elmo doll ok?) We made it home in one piece, and we accomplished our goal. It was a successful day!

Brrrrrr!

It is finally starting to feel like Christmas around here. We have had rather warm temperatures for the past few weeks now, and I was wondering when it would start getting cold. Well, we got our answer: This weekend. We are also going to get snow to go along with those lowering temperatures. This week was pretty nice and stress free. Last Sunday we spent the day putting up our Christmas tree and lights up on the house. Unfortunately, the wind and rain today blew out our icicle lights, so they are no longer lighting up. Not sure what happened, as all the connections still looked good; but oh well. We still have the other lights that we put up, and the yard decorations. I had the day off work, and I was able to catch up on the laundry and grocery shop before the weather crap really hits the fan. Nick had his usual appointment at UW this afternoon. Today was the first day that it was an hour and a half long. He did fine the first hour, but by the time the extra 30 min was up he was ready to go. He was stimming quite a bit, and not used to the longer sessions. I am getting sick of waiting for his OT to start. I was told last Feb that it would only be "4 months" to wait, now, here we are nearly 1 year later and no OT. I have called this place numerous times recently, only to get brushed off. Needless to say, we are looking elsewhere. Makes me so sick because I feel like we just wasted all this time WAITING; only to be let down AGAIN. Today, Nick's therapist at UW gave us some info for some FREE OT-to start in Feb. FREE is for ME! She gave us the paperwork to fill out, and the best thing is; we do not need a Doctor referral!! I also called up the special ed tutor today, and she starts next Thursday. Things are going to get better-I just have to tell myself that. We think he is finally ready to start potty training-we are going to concentrate on that when school is out for the holiday break. Wish us luck!! I will post pictures of snow when we start to get some this weekend.

Happiness is......

..Coming home after a long day at work and finding two boys sleeping peacefully
..Putting a tank full of gas in the Jeep and having it cost only $30 (that alone made me very happy! Last summer it was costing anywhere from $70-$80 bucks for that sucker!)
..Having the dishes done (the boys did them in the afternoon..much to my amazement)
..Having two containers of Take the Cake ice-cream in the freezer(currently everyones fave, that's the reason for the TWO containers)
..Being home before 7pm!(yeah for eight hour shifts!!)
..Having a happy,smiley, silly talking Nicholas all evening(I could just squeeze the livin' daylights out of him when he is like this..it is uber cute!)
..Seeing my two very energetic and noisy offspring chase each other around the house laughing as hard as they can
..Kissing each of their cheeks as they go to sleep
..Looking at the back of my little boy's head(his two swirly cowlicks are just too darned cute)
..This silly face
..And this innocent face

Are you Tired?

"I'm not tired, are you tired?" was what I got from Nick for the first hour I was home. Every time I would answer him, it would spur him into going another round of "I'm not tired, are you tired?" Today at work, I got to talk on the phone to Nick before he went to school. Much of his conversation was scripted; whereas he would repeat what was said to him by daddy, but we still had a conversation...Nick style. Yesterday I came home to 4 small picture frames lined up on the floor in the hallway. What was even better was that the pictures were lined up right underneath the frames. We have come to love these sorts of things created by little man-when you see it, you know that he was there and he left something how he saw fit. All we did until it was bedtime was just walk over it-including Nick. We appreciate his contributions to our home-however odd they may seem to others. Now, we have to go help Nick take the dishcloth off the ceiling fan...

Finally Friday.....

With the refridgerator as his canvas; he created his own masterpiece this morning. He has been the grumpy artist all day as well. He was getting tired of being in the house all day just as I was, so I took him with me to Safeway to pick up two toothbrushes. You know, to replace the ones he so eloquently dunked in the toilet. They are electronic ones too, so we will see how that goes. Maybe he will like it better and let me spend more than 5 seconds on each side. He enjoyed the chance to go "Bye Bye" with mommy. He ran to the couch so I could put his shoes and jacket on, and then stood patiently by the door while I got ready. The whole way there he was gleefully chatting to himself in the backseat. It was wonderful to hear him go on like that. When he does that, I know he is happy. Michael had been getting on his nerves all day long it seemed. Nick was getting in the way a lot, and Michael would tell him "NO", then Nick would fling himself to the floor and start crying. This went on all day long. One of those days where I am happy to put them to bed at night!

A week to be Thankful; and a few phone calls

The week started off with a phone call from Nick's developmental Dr. I was not home at the time, so Mike answered the phone. We all know how guys are when they are supposed to take messages...Mike could not remember which doctor called back. Luckily, I had also e-mailed this doctor, and he wrote me back. I had told him about Nick having mushy and runny stools again, and how it had been going on for a week and we had gone through a period of normal stools after modifying his diet some. He asked if Nick had seen the GI doctor at Madigan yet(yes), and proceeded to tell me that unless he has pure diarrhea, mushy is still considered normal. How can we go from weeks of formed BM's, followed by weeks of mush and it be normal?? If he were sick I could understand. But he's not sick. I just want to know what is going on internally with my boy! I have not e-mailed him back yet, as I had other things going on the past couple of days that needed attention as well, but what do you all think of this?? Any comments would be greatly appreciated!

Also, we got a call back from his neurologist Monday. She wants to see him again in December. She thinks it is probably nothing to worry about as well. After all, don't a lot of kids have 15-20 spasms in a 2 hour period?? I am beginning to think everyone thinks I am making stuff up. She talked to Mike and he said he had not noticed anything. Of course! Nick is at home, and not in a stressful-chaotic-environment. From what I have read about seizures(and I have done ALOT of reading the past week) is that they can cause muscle spasms, and can happen in periods of high stress or excitement(a new school routine would fall into that category..don't ya think??) Anyway, his therapist at UW saw these episodes as well, and she mentioned that maybe he could see their neuro. I asked her today while we were there and she said that she would check into it.

I sat down with her today before we started his session and we discussed upcoming goals we would like to see reached. We want to revisit the whole potty training thing-but not the way we did it before. We discussed more about "trip-training"...where we take him to the bathroom every hour or so and have him sit on the toilet for a few minutes. We will see if the school will move their classroom to one that has a bathroom before we attempt this-because the school needs to be involved in this whole process. We are seeing positive changes in Nick as well. He is really trying to communicate with us on a new level. He is wanting things, and when he cannot reach them, he comes to get us, and looks specifically in a certain direction and will say things like "I want toy" or something of the like. He is able to follow a point and get things for us, and he even will help put away the groceries.He is able to undress himself and get in to the tub, his receptive language has just exploded this year and he is understanding nearly everything we say now.

Tomorrow is Thanksgiving and that means it is a day to be thankful for what we have. I am thankful that my children are healthy.
I am thankful that we have not dealt with any major side effects of Michael's meds
I am thankful to have a wonderful hubby who has been by my side through thick and thin.
I am thankful for my family-who have supported us throughout this journey.
I am thankful to have a few really awesome friends. I give a shout out to my "peeps" Dana, Cristina,Kristine,Susan, and Elyssa-you all are wonderful!!
I am thankful that Nick has not flushed the remote down the toilet,although numerous submersions have deemed in in-operable.
I am more thankful that the cable company is giving us a new remote for FREE
Hope you all have a wonderful Thanksgiving and enjoy the time with your families!

Back to Neurology we go

Good thing I did go to Nick's class today. He had about 20 more of those twitching and jerking episodes. I think the teachers noticed, but were not really comfortable yet to say anything. I am going to go again tomorrow and see if I can get a video of him doing it. None of the other kids were having these sort of spasms and it seemed to happen in the high-stress environment vs. being at home. So, I will be calling his neurologist again tomorrow.

Don't Mess with a Special Needs Mom!

Ok, here is what has been going on for the past few weeks. I got a call a few weeks ago saying that Nick would have to transfer schools. The reason I was told this was because there were too many special needs kids from our neighborhood going to this particular school and they were going to set-up a class for them at a school closer to us. I had already dealt with this school before when Michael went there-so despite being told that it was a "great school", I knew otherwise. Needless to say, the transfer was forced upon us, and we were to start there on the 17th. That gave the school TWO WEEKS to prepare for a special needs class. TWO WEEKS.

Fast forward to last Friday when all of us mothers met with our kids teachers and had a chance to see the classroom. The room itself was not made for these kids. There was no theraputic equipment such as a big bouncy ball or swings. Fine. Ok, we can deal with that. I asked if there was going to be a registered nurse at the school-I was told no. Wait a minute. "My daughter has seizures!" one of the moms exclaimed. No nurse-just one of those "health clinicians"-someone to basically put a band aid on a scraped knee. Strike one for the school. There is no bathroom connected to the classroom-our kids must be escorted down the hall, and use the school bathroom. No problem for typical kids. But, our kids are not typical are they? The trip to the bathroom has a greater chance of resulting in soiled clothes-not to mention the fact that Nicholas himself cannot tolerate public restrooms(which we are working on, but it has been a slow process). Plus, our kids like to be independent just like other kids, and having an escort to the bathroom just makes them stand out even more. Strike two. The school is not fenced in and is next to a major road. Our kids will not be able to participate in recess. Which they were doing at the other school-participating with the typical kids. My son won't have recess. "What's the big deal?" you might ask? Well, my kid deserves recess just like the other kids. Nicholas is more like typical kids than he is different. He likes to slide, and swing, and climb around just as they do. So, due to this little oversight by the school, him and his classmates are cooped up in the classroom the whole time and have no opportunity to mix with other kids their age. Not to mention that the school does not seem to have a plan once these kids get past pre-school. I have joined with the other moms and we are wanting to meet with this principle so we can discuss these things in depth with him.

I am angry. No one gave much thought into this at all. They uprooted these kids from a school they loved and was prepared for them, and put them in a school that was not. No thought was given to these children at all. No thought beyond "we'll just shove them in a room with toys and attempt to teach them". Why would they think any more of Special Needs kids? At the meeting, it was also said that the teachers would escort our kids to the classroom upon being dropped off. Great. Why is it that when one mom dropped off her child this week, that the teacher that was there just let him wander off?? Another mom had to step in and guide him to his class. Mike and I have some major issues with this school not being the least bit educated on autism-which is a major problem if you have a so-called Special Needs program don't ya think?? I am going to Nick's class today to observe what goes on, and hopefully us moms can get with this principle very soon.

A Picture is Worth 1,000 Words

This is what happened to my lap top while I was at Wal-Mart

Please help me to find the humor in this?! Calgon, I am BEGGING you to take me away. Far, far, far away.

Genetic Testing?

The neurologist called yesterday afternoon to give us the results of his EEG. He does not have seizures, but she did go on to say that he certainly does "shake quite a bit". She thought that we should have some genetic testing done-but that we could wait until after the holidays. She said the new test they have out cost like $1400.00
We have not done any of this type of testing yet on Nick because I questioned whether or not it would really matter? It would not change the way he is, so why bother? I used to think that, anyway. Now, I am rethinking that decision. We need to know more. I don't know what the tests will reveal, but if it could possibly help him more, then we are all for it. I want to know why he can do things so easily one week, then the next week he can barely do them at all. Two weeks ago, he could not identify any of the items that we had been working on for so long. Today, he identified those items, plus a couple more. It is the same sort of dance all year. He will have a good run of it for a few weeks, then, suddenly,it will be gone for a couple weeks and we have to gain these skills back. It is a frustrating process. We know that he knows these things, but he has trouble breaking through his stims. You have to physically hold his hands still, and hold his body to stop it-and then you can see him "come back". I wish we could get those under control so he can focus better.

It is too soon whether or not I can honestly say that the clay baths are helping. I do know that he has been quite irritable since the last bath Wednesday night; but he has also been more connected. We will see if he continues this, or starts regressing in a couple of weeks. I know it does something because I put my hand in the tub to swish the water around for a few minutes, and about an hour later I felt queesy and very tired(which were listed as side effects).

Well, I need to get Nick off to bed, and make Michael something to eat. Good night fellow bloggers!

Lots Happening Last Week

Boy was it a busy week! Thursday I went and did my work out in the morning since the afternoon would be busy. We did a spin session on a stationary bike, and do those ever kick your butt! After that, I went and did a review with my fitness manager for the end of the month.

Then, it was time to get a little housework in before Nick got home from school. Not very much happened with that, but it sounded good didn't it? At 12:30 we had an appointment for his EEG, and we are running late as always. I did not want him to go on an empty stomach, so I insisted on feeding him before we leave. And if any of you know Nick, you know it takes FOREVER for him to chew anything. I mean, he chews noodles like 45 times! We get to Ft. Lewis, and what do ya know? I get pulled over for a random vehicle inspection. Why today? Thank goodness they said Nick could stay in the car while they checked it out. We get done with that, drive to the hospital, find a parking spot(a miracle in itself) and check in. A few minutes late. They hook the leads to Nick's head, and we are under way with the test. He was pretty good during the test, due to the fact that I had also gone out that morning and bought him some little toys to keep him busy. We are now waiting on the results from the neurologist.

Friday was spent working on Nick's halloween costume, along with therapy. Here are a few pictures from Halloween!


Nick going trick-or-treating

Enjoying his costume!

Making the costume. Four strands of battery operated Christmas lights.

The whole family got involved.

We are keeping the costume for next year, and might add some things to it. Everyone commented on it! They all that it was very neat, and the kids who saw him were going "OOOOOOHHH WOW! That is COOL!"

Snapshot Sunday

Taken yesterday after our "family run". All the boys went with me to do some interval training at the track. Michael and I each did about 90 sit-ups and push-ups, as well as running 2 miles of intervals. Nick, followed behind us with Daddy and did about 3/4 of a mile himself! Maybe he will be a track and field type of guy?!

From Babyfood To Roast Beef

This time last year it was impossible to get Nick to eat ANY table food. He would not even let you get near him with anything that he deemed "No Go"; which was basically everything. I was at the end of my rope, and since doctors could not give us any advice, I turned to our speech therapist.

Nick never explored anything with his mouth as a baby. Turns out that this is a necessary milestone when it comes to eating. He was also opposed to messing around with food with his hands; which is also a necessary evil when it comes to eating. At the same time babies are making a mess with their food, they are developing their mouth for the task of chewing. Also, Nick did not give two craps for what we were eating. In other words, along with not developing the skills needed for chewing things with texture, he also did not care that he was eating different food than we were. ALL these things combined,plus his autism-made it very difficult for us to introduce new foods. We spent the early part of this year with just ONE piece of cereal. After weeks of "playing" with it,he finally put it in his mouth and ate it! In my mind, we had just climbed Mt. Everest.

It seems impossible to think that less than a year later, babyfood is a thing of the past. Nick's faves are now things like waffles,pancakes, hot-dogs, Mac-n-cheese, and fruit cups. Last night he ate roast beef-and enjoyed it. We still face lots of issues regarding food-it takes him forever to chew anything; and new foods can be a challenge to get him to try, but he DOES it. YAY Nicholas! Way to go my sweet "bubby".

Baby Steps....

That is the name of the game for Nick. We take baby steps towards progress. Big goals are broken down into numerous smaller goals. A few months ago, we had to lead him by the hand in order for him to go find his cup so I could fill it. We would lead him to it, bend him over, and with hand-over-hand prompting he would pick it up and we would lead him by the hand to the kitchen counter. That was a few months ago. It takes painstaking repetition and sometimes he would fuss about doing it, but the payoff came this week. He told me he wanted milk, I told him to go get his cup. He went into the livingroom(I am still in the kitchen) and came back with cup in hand and said "Look!" I don't think I could have had a bigger smile on my face. My boy brought me his cup. On his own. It was glorious. He did so many new things in the last few days. He now will do the hand movements to "Twinkle, twinkle,little star", and other songs, and he asked his first question yesterday! He asked "Where's daddy?" after Mike had walked out of the bedroom. My jaw hit the floor, and we immediately started playing "Where's daddy?" and went to find him. I get so excited when we can see measurable improvement. Cognitively he is maturing, and it is like a lightbulb has been turned on. I gave him a bath yesterday and he saw his reflection in the drain. He looked at it intently and then said "HI Nicholas!" We could never really be sure if he recognized himself in things like mirrors,etc. But now I know he does, and to me, that is a huge step cognitively. It was a great week,and we are hoping to see even more progress next week!

A Costume for Nick

Sorry I have not posted in so long! Life has just been going along pretty quietly here. Nick's headbanging resurfaced for a short time, but he lost interest in it rather quickly this time, either that or Michael just has not pissed him off too badly!LOL! We have an appointment with the Neurology clinic tomorrow, and honestly, I am not sure what I am going to tell them. I have not noticed any major jerks lately, but he did have some smaller ones during therapy last week. Not sure if his therapist noticed or not, but I did. When things like this happen and then seemingly go away-I start to wonder if I am just a neurotic mother. I know there may be nothing we could do about them, but I guess I just need confirmation of sorts that I am not losing my mind. And, I want to know what is possibly going on with my little boy!

Fall has definitely arrived. The trees are quickly turning bright reds,yellows, and browns and losing their leaves. We are getting ready for Halloween. Michael is going to be a ninja again, and Nick, well, we are making him a rather unique costume this year. I tried to find a costume for him, but nothing jumped out at me. He is not interested in super heroes, or other characters. Sure we could dress him up in some costume that we would deem "acceptable or appropriate". But, what would HE want? We had to think. When your child's objects of affection are things like microwaves,ceiling fans, and light switches, you have to be creative. The idea quickly came to light...literally. Nick loves colorful lights. Why not dress him in something we KNOW he would love! So, I went out with a different costume in mind. I found a black hooded costume robe that is his size, some multi-colored battery operated decorative lights in the Christmas section, and some fabric glue to glue them on. We also thought we could attach things like pinwheels, and other small toys that Nick likes. Now, that would be a costume that says Nick all over it! Maybe next year we can find a way to hook up his own light switch to his lights! I will post pictures when I get it all done.

Walking with Nicholas

It was a brilliant fall day outside today, so Nick and I took a walk down to the playground. He was so happy to get out of the house that he was flapping and running the whole way! He loved watching his shadow on the pavement and I loved watching him become so animated. His whole body was enjoying the moment, and I managed to catch some good pictures.






This was seriously one happy child! Hands were flailing and the air at the park was filled with Nick's happy bantering. It was a lovely afternoon!